Life With Liam

Milestones

2010-08-25T20:52:00.000-07:00

It is inevitable. Whenever Liam and I are out and about together, there is a high probability that he will utter the dreaded words “go potty?!” He says it with a sort of desperate tone in his voice, as though he has been holding it and is now about to burst. One may wonder why the dread at hearing these words. Well, Liam is 9 ½ now and it is beginning to feel a bit odd to take him into the women’s restroom with me. Honestly, I don’t really care that much right now. If we get any strange looks I take solace in knowing that if someone spent even one minute with him they would understand. However, I know that time is ticking and it won’t be long before it is absolutely not an option.
A couple of years ago, I mentioned (well, more like pleaded) with Gary to start working on Liam using a public bathroom on his own. Gary didn’t understand why I felt the need for this. In fact, I recall him saying something like “you would leave him all alone in a public bathroom?” “Yes, I would. I can’t go in the men’s room and he is getting too old to go into the women’s.” Gary has always been a little overprotective of the kids and is constantly fearful that someone is going to steal them. I explained to him that I let Claire use the restroom by herself all the time because I have to stay out in the store with Liam. “I can’t leave Liam alone in a store if she has to go and, you know what, she is fine!” I think he was a little miffed at me for this as he muttered something about her being too young. Well, two years have passed since this conversation and not much has happened with public bathroom training 101. I think the reasons for this are simple. Gary is rarely shopping with both kids by himself and he can accompany Liam in the men’s room. Consequently, it just doesn’t come up for him as a problem.
Recently, I was with Liam at Fred Meyer, a large grocery store chain that also sells clothing, electronics, furniture, well…just about anything you might need. Liam and I were just about to check out when he informs me of the urgency to go potty. In the past if I encouraged Liam to use the men’s restroom he would emphatically refuse. “No! Mommy come too” he would say with panic in his voice. He would pull my hand trying to drag me in there with him. Ultimately, I would give up and take him into the women’s. In fact, in the past, Liam was actually terrified of almost all public restrooms. He would ask to go, but once we got there, he would panic and refuse to go. If I knew he really needed to go I would just pull his pants down and plop him on the toilet, holding him there until he went. Nowadays, he seems to have a love for the public potty with all the toilets to flush, automatic paper towel dispensers and the like. So, on this one day at Fred Meyer I decided to try for the men’s room again. I opened the door and said “go in.” Of course Liam said “no!” “Go on buddy, you’ll be okay. Mommy will be right here waiting for you.” To my surprise, in he went. I was so shocked! No fight, no panic, no pulling on my arm. Then it hit me…what if he doesn’t come out? I really didn’t think he would go in, so I didn’t set any expectations at the onset or have a well thought out plan. I couldn’t hear anything going on in there at first. I wondered if he would even go. Then a dad and his two boys went in. After a bit I started to hear some toilet’s flushing. Then some more, and some more. Hmmm, is that Liam or just the dad and his kids. Out came the dad and his kids. The dad says to me “he’s still in there,” seeming to know that Liam was mine and I was wondering. “Thanks.” I thought about asking if he would go get him, but I wanted to see what would happen if I gave it some more time. I could hear the toilet’s flushing again. Now I knew it was Liam having a heyday in there. I opened the door and peeked in “Liam, come on out buddy.” I don’t think he could hear me with all the flushing going on. Fortunately, another man came by and said “do you have a youngster in there?” “Yes I do!” “What’s his name? I’ll get him” he said as though it was the most normal thing on the planet to have a boy not leave the bathroom. Perhaps it is, I really wouldn’t know. Thankfully, this man went in and ushered him out without incident. Liam ran up to me and grabbed my hand. Ewww was all I could think. What must he have touched in there? I rinsed his hands off in the drinking fountain outside the bathroom; at least it felt like I was doing something to decontaminate his hands. Despite all of this, I felt an overwhelming sense of joy and pride! Liam had actually parted with me to use the restroom in a public place, all by himself. I’m pretty sure he actually went, and he did come out with his pants pulled up, which was a huge relief! I called Gary on his cell and told him, I just had to share the good news with someone that would get how huge this was. Gary was happy and not at all mad that I had let Liam out of my sight for a few minutes and allowed a perfect stranger to apprehend him. I felt pretty high all day and was eager to share my story with anyone that would listen.
One of the people I had the occasion to share my story with was one of my coworkers who has an adult son with Autism. I knew that she would get it, as she can appreciate all of the milestones we track in our kids that aren’t on any developmental chart. She was congratulatory, of course, but then went on to tell me about all the public potty related milestones to come. The airport bathroom, truck stop bathroom (where her son actually locked himself in and then couldn’t figure out how to unlock the door), and on and on. My joy started to dissipate a bit with the realization of what lay ahead. I was under the mistaken impression that once I figured out how to get him to go in, do his business, and come out, we would be done. How naive of me! She did give me one very important pearl of wisdom – hand sanitizer! How perfectly simple, why hadn’t I thought of that?
Just like everything else, moving forward for Liam is measured in baby steps. I have to not let the long road ahead interfere with the accomplishment of today. I really am proud of him and he has to start somewhere, even if that somewhere is just letting go of needing Mommy by his side and walking into a bathroom all by himself for the first time.

Liam's NACD program

2010-05-31T21:18:00.000-07:00

In response to the many folks who have inquired about NACD (National Association for Child Development), wondering "what is it exactly?", I decided to do a video blog to try and demonstrate a bit of what this organization has to offer. We began working with NACD for Liam this past October. I became interested in this approach after reading a book titled "The Brain That Changes Itself" by Norman Doidge, which is about the plasticity of the brain and, more specifically, how neuro scientists discovered that the brain is plastic at any age. I then went on to read "What to do About Your Brain Injured Child" by Glenn Doman, which chronicles the story of how Mr. Doman pioneered interventions to help severely brain injured children by directly treating the brain using the knowledge and understanding of brain development and principals of brain plasticity. These books, along with my google research and hearing from other families utilizing this approach, got me inspired to seek out neurodevelopment therapy for Liam. We settled on NACD, which is headquartered in Utah, but comes to Seattle every three months to do evaluations on their clients in this region of the country, because they seemed like a very well rounded program that could offer us guidance in all areas of Liam's development and need. I also liked their price structure, which is basically paying dues each month, but this money goes toward re-evaluation every three months and unlimited support in between. I've been kind of pioneering my own program for Liam, based on various principals of specific therapies, for a long time and really liked the idea of having an organization giving me specific activities, techniques, and goals. I also liked that we would get an updated evaluation and new program every three months. That all sounded great to me!

NACD provides neurodevelopmental evaluations and individual programs that consist of several activities parents run at home. The activities are eclectic and are chosen to target specific areas of the brain that need input to bring about change for higher neurological functioning. A neurodevelopmental evaluation basically assesses the person's level of functioning in the areas of visual, auditory, tactile, mobility, language, and manual competence. It looks to determine at when stage of brain development in each of these 6 areas is the person functioning from lowest (medula and cord) to highest (sophisticated cortex). For many people with brain injuries, development is scattered across these areas and even within them. It's my understanding that a program such as NACD seeks to offer targeted intervention at the lowest brain level that shows incomplete development. This helps to bring about a more organized and efficient brain that is capable of learning easily. After the neurodelvelopmental evaluation, NACD emails a very detailed program of specific activities to be run with Liam daily. Many of these activities are run more than once per day. NACD identifies a frequency and duration for each activity. To bring about permanent change in the brain, it needs specific input with a specific frequency and duration, provided over time with good intensity (motivation on the part of the child). Random input usually will not get the job done. We also have a few activities targeting academics and, as Liam advances in his development, NACD can offer more academic programs for Liam.

Our program has over two dozen activities to do with Liam, with most activities being run two times per day. While the duration for each activity is usually quite short, 1-2 minutes, it usually takes the bulk of Liam's school day to complete. We do have one activity with a duration of 20 times per day, which is a real killer! The most difficult thing for us is keeping Liam's motivation up. Certainly, if his mind is not in it, we might as well be doing nothing. We don't always achieve good motivation and we aren't always able to get all the activities completed, but that is to be expected. We, and Liam, do the best we can. I've made some video of some of Liam's activities to help show what it looks like. Most of these are a couple of months old, as I haven't gotten around to putting this together until now. However, it will give you a reasonable idea of what we are up to each day and, if you are a parent interested in exploring this type of intervention for your child, I hope it helps to demystify it a bit.

Click here to view the activities with descriptions on youtube.

Blades of Ambiguity

2010-05-18T15:21:00.000-07:00

I never really gave ice skating much thought. Where I grew up I didn’t know anyone who ice skated. We had no rink and the winters weren’t cold enough to freeze any bodies of water. But in Portland we have malls with indoor ice rinks that run all year long. We take the kids to the mall quite frequently. We all go for different reasons; Angie goes for the shopping, Claire goes for the candy and gumballs, Liam goes to ride the escalator or elevator, and I go for the live piano music in Nordstrom….actually I just go because everyone else is going. But as we have gone to the mall all these years Claire started noticing the ice skaters there, so we would often stop and watch the skaters and both kids were really into it. Claire got really interested in wanting to try it. We kept saying that we would try it and if she liked it she could take lessons…we said that for over a year and never got around to it. Angie is the only one who had ever skated before and I was sure that if I got out there it wouldn’t be pretty. So we just kept putting it off.
This last New Year my sister was in town and Angie had my sister’s two girls at our house with Liam and Claire while I was at work. Angie called me and said “When you get home from work, I am going to take the girls Ice skating and you can hang out with Liam.”
“Sounds good.” I said.
“Oh wait…” She said.
“What?”
“Liam just heard me say that and now he thinks he’s going. He’s jumping around saying ‘skating Skating!’”.
“He’s not gonna want to skate is he?”
“I don’t know he’s pretty excited.”
“Well we’ll figure it out when I get home.” I said trying to think of a more enticing activity for Liam.

When I got home Angie told me that Liam was running around practicing skating jumps and leaps and wouldn’t stop talking about skating. So we decided to all go to the ice rink and if Liam still wanted to skate we would put skates on him. We predicted that once he got them on and wouldn’t be able to walk very well he would want them off and I would just take him to ride the escalators until the girls were done.

We put the skates on him and he sprang right up and started walking straight to the ice. He wasn’t even wobbly. We couldn’t believe it. We had to stop him until everyone was ready. That also meant that I had to get some skates on, but I figured that once Liam got on the ice and realized it was slippery, he would want to get off and go ride escalators. I put my skates on and walked in them without wobbling. I always envisioned my ankles snapping in half as soon as I walked in ice skates, but I was surprisingly stable…and tall.
So, we were all ready to hit the ice. Angie and our two nieces were the only ones who had ever skated before so Liam would go with Angie, and Claire could be with her cousins and I was on my own. Liam got out on the ice with Angie and, to our shock, was not only thoroughly enjoying it but he stayed upright. He did hold tightly to Angie but he wasn’t slipping and his feet were firmly under him, and best of all, he was giggling with enjoyment the whole time. I followed behind Angie and Liam and was doing better than I thought I would. I stayed up and kept up and it was a lot easier than I thought it would be…I was extremely graceful…in my own mind…where it counts.

We all skated for about an hour and had a great time. It was a wonderful surprise to realize that Liam could skate and enjoy it so much. We felt like we had found a great new activity that we all could do together. Afterwards Liam kept bringing it up and would ask to go skating every day. I was also anxious to get back out there too. Over the Winter break we went skating three times and each time we had a blast. Liam was actually better than Claire at that point but both kids were having fun. I, too, was really liking this new activity and getting better as Angie skated figure eights around me.

And then the Zamboni made its first appearance on the ice. If you’re picturing a large baked pasta dish sliding across the ice I must explain that a Zamboni is a big machine that comes out on the ice between skating and smoothes the ice out. Liam loves any kind of big machine so for him to discover that not only does he like skating, but he also gets to see another huge machine while he is there, really sealed the skating deal for him. From then on all we heard from him for days was “Skaning? Zambowing? Yep yep gonna go skaning. See the Zambowing.”

School started again for Claire and since Liam was home schooled and I was newly unemployed at the time, Angie and I would take him during the day. It was really special for him to have us both skating with him and he was loving it. We bought him a little toy Zamboni that he played with all the time until he broke It, as expected, and then he played with it some more. We were so excited about Liam’s enthusiasm that we got a little overly enthusiastic about Liam and skating ourselves.

We asked Claire if she wanted to take lessons. Of course she said yes. We also decided to put Liam in lessons. We figured since he really liked it he could get used to lessons as he has gotten used to many other group activities he has done in the community. We knew it could be a little rough for him (and the instructor) at first but he would adapt. We continued to go skating about once a week and signed the kids up for lessons that would start shortly.

When it came time for lessons we went in with great anticipation and hope that Liam would really like the group atmosphere and enjoy getting better at skating. We talked to the instructor about his deficits with language and some comprehension. She seemed a little concerned but willing to work with him. Angie put her skates on just in case she needed to go out there with him. When the class started we sent Liam out to the ice with the instructor. That was our first mistake. Liam did not understand why he wasn’t just going skating with us as he had been doing. He went out there but immediately dropped to his knees and began crying. We let the instructor try to get him back up and work with him but it only made him more anxious and he just cried harder saying “No? No?” Angie went out there. Liam was relieved to see her and he calmed down a little bit. Angie tried to get him going with the class telling him she would stay with him, but it was too late. Liam just wanted her to take him away from the class and off the ice. He was fine the rest of the time just watching Claire and the other kids in the class. After the class was free skate time and Liam was, for the first time, hesitant to skate. Immediately I was thinking to myself “Did we push it too hard? Were we too overzealous about the skating? Did we ruin it for Liam? How much water does a Zamboni hold?” We didn’t want Liam to leave that time with a bad taste in his mouth so we took him out on the ice anyway despite his minor protests. He actually did go out and he skated but not with the same delight he had prior to the lesson. I think he didn’t trust that we were not going to try to drop him with some stranger in a class. We would go around once with him and he would say “Off? Watch?” Meaning he just wanted to watch the other skaters and not skate himself.

Angie and I talked about what we should do and decided we would take him skating again between then and the next class just to see if he was still liking it and if it went well we would try the class the next week but Angie would go out there with him from the beginning and stay with him. He was fine when we took him skating again but seemed to be starting developing a little anxiety around it. He wanted to get off the ice frequently and would continuously ask for the Zamboni. I didn’t have my Zamboni license or else I would have gotten it for him. We tried the class again with the new plan but Liam just wouldn’t have it. He immediately threw a fit and wanted off the ice. The class wasn’t for him. Liam was communicating the best he could that he just wanted to skate his own way and just couldn’t see why we had to push it beyond that. And we realized he was right. The whole skating thing should just follow what’s natural for Liam and there was no point sucking the joy out of it by pushing him. We were just so surprised and delighted at his initial ability and enthusiasm that we really wanted him to ride that confidence to a new level. Claire stayed in the class and loved it. We had already paid for Liam so I took the remainder of his classes (before you go picturing a 45 year old man in a class with 6 to 10 year olds, I was able to transfer Liam’s lessons to an adult class).

The whole skating thing got a little shaky for a while. Liam talked about skating and Zambonies all the time. Claire had class every Wednesday night and we would all go and we would all skate afterward. Angie would sometimes take Liam during the day when she was home schooling him. But Liam was getting a little obsessed with skating. Actually he liked talking about skating more than actually skating at this point. He would constantly ask to go but whenever we would go he mostly didn’t want to skate. He would go around once and then want off the ice and he continually asked for the Zamboni. This became a sort of pattern and it was starting get on our nerves and it was starting to seem like skating was not healthy for him at this point. We decided to keep him away from skating for a while and see if he would calm down. Angie and I would take turns taking Claire on Wednesdays and Liam would stay home.

After a few weeks Liam stopped talking about skating. We tried to not talk about it in front of him too much. We were still determined that this could be a family activity and we didn’t want to take Liam away from it forever. We just felt he needed a break from it to regroup. We decided to take him again and see how he did. We approached it much more matter-of-factly and I think this helped Liam. If he wanted to just watch that was fine and if he wanted to skate that was fine too. He wanted to skate. He was back to enjoying it and smiling again while skating. The anxiety was not gone but much more manageable. He was happy to stay on the ice and was not asking to get off the whole time. He still wanted to see the Zamboni run and would bring it up frequently but if it didn’t come out he was OK with that.

So that’s where we are with skating now. Angie skates like a pro, Claire is advancing in her class and still loves it, I continue to develop my sweet moves mainly because I’m too old to get embarrassed any more, and Liam just does what he does, making it as clear as he can that life is too short not to enjoy it on your own terms.

Liamese

2010-05-05T21:29:00.000-07:00

Liam has come a long way with his speech. He used to not be able to form complete words. For example his word for “dog” was “da” and his word for “bubble” was “ba”. He can say those and a multitude of other words clearly now with no problem. However he can still be pretty hard to understand when you are not around him all the time. Even Angie and I have to ask Claire to translate for us occasionally. So I got to thinking it might be helpful to put together a little ”Liam to English” dictionary to help rectify some of what he is saying with what he is meaning. I hope those who encounter Liam find it useful.

Skaning: Skating, let’s go now.

Zambowing: Zamboni (almost as cool as an auger).

Want some piece?: May I have a piece of gluten free bread please?

Jimjax: Gymnastics (old style)

Naxtix: Gymnastics (new style)

Gudunuh!: Godammit! (Not sure where he learned that)

Ehvay: Elevator (could ride it all day)

Escaway: Escalator (wonders why we can’t have one in our house)

Baze on?: Will you please help me put my roller blades on so I can skate through the house?

It’s poop in there: I see some dog poop on the ground.

Frubie?: Can I please listen to the “Free To Be You And Me” CD (for the bazillionth time)?

Tolstoy: Toy store, or the movie “Toy Story”

Toucha pwena: I know I’m not supposed to touch the printer but I really want to. I’ll try my best not to, but I can’t promise anything.

Chester sit: Sit Chester (generally repeated even if Chester is sitting)

Stwabee: Strawberry (favorite fruit)

Honey poe: Home Depot

‘Vie store: Movie store

Go the store? Go the park? Go skaning?: I’m bored

Go the store? Go the park? Go skaning (with hitting)?: I’m bored and hungry

Stows?: May I please listen to The Rolling Stones?

Dave: Any friend of mine that comes over

Pay: Computer (as in “please ‘pay’ for the computer I’m about to break”)

Seeve up?: I want to play the game where you pull your sleeve up and I rub my face on your arm.

Spinko?: Can we play in the sprinkler even though it’s February?

Chawka muk: Chocolate almond milk (new favorite drink)

Smoomie: Smoothie (old favorite drink)

Pasta tin tin tin: Pasta (not sure what tin tin tin means)

Churchy: Turkey (I guess he assumes it’s been dipped in holy water)

Koont: Anything from Ikea (see past blog entry titled “Sunday”)

Cash Cash: Cash Cab (one of his favorite TV shows. No idea why he likes it)

Jobs: Dirty Jobs (Another favorite show. Easy to know why he likes this one…)

Sowie: Cereal

It’s gonna go fast!: I’m excited

It’s gonna go fast (with hand flapping): I’m too excited

Ah voo: I love you

A Family Divided

2010-04-30T08:04:00.000-07:00

Claire had a Maypole festival at her school during which all of the grades performed dances and songs from various countries. Whenever there are events such as this I always feel a little stressed. I want to be there for Claire, but I also have to figure out what to do with Liam and how to rearrange my day as I teach Liam in the morning and work outside the home in the afternoon. It feels like a juggling act. It would be so much easier if both of the kids were in school and I just had to clear a couple of hours from work.
I decided to swap shifts with one of Liam’s home therapists and have her teach Liam in the morning so that I could go to work in the morning. I planned to take Liam to the festival with me in the afternoon. I knew it was risky. Sometimes he likes these things and sometimes they are tough for him to tolerate. None the less, reality is I have to work, Liam is not in school, and we have limited options for full-day childcare for him. I’d take him and hope for the best. Not going was definitely not an option. Claire was dancing and singing around the house, so proud of her little dance and excited to have me watch her performance with the other first graders.
I bought her a new white dress and some shoes for the event. I could tell she felt special and I wanted to help create a positive memory of this time in her life. On the day of the event she said to me “you’re coming, right?” “I wouldn’t miss it for the world honey.”
I picked Liam up at 1 p.m. from home as planned. He had had a great day and was super happy. He had eaten well too, which is very critical for his mood. He seemed super excited to go to Claire’s school and talked about it in the car the whole way there. I tried to explain to him that we were going to a performance and what that meant. I don’t know that it registered or what he was envisioning. We arrived at the event, which had been planned for outdoors, but was moved indoors due to on and off again hail and rain. I was glad that it was not being held outside because it was cold and wet, but felt a little twinge of worry that it would be harder for Liam in an indoor location. Liam entered the event with excitement and seemed very happy to be there. I sat with him on the floor at the front of the stage area so that he could easily see the performances. Claire and her classmates were sitting just a little ways away from us. Claire and I caught eyes and she smiled and waved. Her face lit up. I blew her a kiss and pointed her out to Liam. All seemed well so far.
It took a while for all of the students to enter and Liam started to get a bit restless. Just as the even t was being introduced, Liam got up and ran out into the stage area toward Claire. I grabbed him and sat him at the edge of her classmates as it seemed like he just wanted to be with the kids. This appeased him for a while. Fortunately Claire’s grade performed first. It was super cute and Liam was clapping and smiling throughout. After their performance, everyone applauded (which was very loud) and this startled him a bit. This was the beginning of a downward spiral. He vacillated between enjoying watching the children, smiling, dancing, and clapping in applause, to saying “go home, go to the store, go to Target?” and lightly smacking me. This is his little way of saying I don’t want to be here. I decided to move him to the back of the room where there was more space and he could be further removed from the loud applause. This worked for a while but it became clearer and clearer that he was not going to last. He started to screech and holler a bit, which I know means if I don’t take action and get him out of there he will start to all out scream. His smacking turned into more or less hitting and then he kicked me. Okay, we’re out of here.
I realize it’s not the best to take him out on the heels of misbehavior. I should have done it when he was verbalizing his desire to leave, albeit in his little code of “go home, go to the store, go to Target?” The problem is that I didn’t want to leave. This was for Claire. I knew it was important to here that I was there. My heart felt broken, divided… on one hand needing to do what is right for Liam, on the other what is right for Claire. I should have found a way to not have to bring him. It doesn’t seem fair though. There are lots of siblings there. Why can’t Claire have her family there too? Why should I always have to exclude Liam? I just want to be normal. It feels like we’re the only family there that’s always divided – we’re “that” family – the one causing a scene, or that can’t show up, or has to leave early. Sometimes it all works out, but most of the time we have to divide and conquer. One parent there with Claire, the other home with Liam. On the times that we risk it and bring Liam, there is always this worry in the back of our mind, it’s hard to relax. When he handles it and has a good time, there is no greater high. It feels like one step toward a family united – toward normalcy. When it doesn’t work out – well, that’s a whole different story.
After we left the festival, I took Liam to Fred Meyer, a grocery store near Claire’s school, because they have an escalator, toys, and, of course, food. For Liam it’s the perfect place to kill some time on a rainy day before having to head back to the school to pick Claire up for the day. Liam got happier once he was out of the school. I did the right thing by him. I started to cry though, imagining my little girl sitting in her pretty white dress thinking her mom and brother were there. I wandered around Fred Meyer with Liam who was happily exploring toys and riding the escalator, tears in my eyes feeling just plain sad. I just wish we could be normal for once. That everything wasn’t so hard. Do I lie to Claire and act like we were there the whole time? Do I tell her the truth? Do I avoid saying anything and hope that it doesn’t come up? Would she know anyway if the festival ended early and the children were dismissed to their parents, only her parent wasn’t there? I guess we will cross that bridge when we come to it.
It’s in these times that the reality of Liam’s disability just hits me over the head. The room was filled with parents and toddlers and kindergarteners, all of whom seemed to have no trouble at all tolerating this event. Sure, most of the younger kids were wandering around or playing, not really paying any attention to the show, yet they were happy to do it. They weren’t bothered by the noise or confused about what was happening. Liam functions higher than a toddler. All the same, he just can’t handle a random, unpredictable event, and especially one that is intermittently loud. Will this ever change? Will there be a day that we can all participate in these events together? I can’t bear the thought of excluding him all of the time but I also can’t, and won’t, dismiss Claire and her world. I try to make the best decisions with what we have to work with. I hope they will both understand that one day. I wonder what Claire thinks about all of this or how she will internalize her family life. Will she really understand how important she is to me even though I can’t always live up to my promises? Will she come to understand how divided I feel in trying to meet both her needs and the needs of Liam? Will I get to enjoy the little events that mark both of these children’s childhoods without feeling divided?
My goal for today is to refocus my mind, to remember watching my little girl singing and dancing around a maypole, her brother at my side, clapping, and smiling, and let the rest of it go. That was a precious moment, the reason we were there, and a memory I think we will all carry with us as family united.

Reflections on a Year Gone By…

2010-01-22T20:57:00.000-08:00

Well, it has been some time since my last blog. It’s hard to believe how much time has gone by. It seems like there is so much less time in the Fall and Winter months. Days are short and everything feels compressed. Lately I’ve been thinking about the past year and reflecting on all of the changes in Liam and all of the things we have been able to provide him over this past year. This led me to thinking about all of the love and support and generosity we have received this year, which has allowed us to pursue so many interventions and reach so many goals. It’s been such an amazing feeling to know there are so many people out there who know about Liam, care about Liam, and are rooting for him. It makes me feel like we are truly part of a community and has lessened the feelings of isolation I’ve lived with over the years. So thank you for caring and thank you for your support, generosity and love.

Now that it is a new year, I’ve felt a pull to get back to writing and sharing. I wanted to reflect on the accomplishments we’ve made this year. It is so easy to lose sight of the steps forward and goals met. I’d like to begin documenting these milestones – to look back on when feeling low, to remember where we once were, and to update everyone on Liam’s progress.

For starters, thanks to all of the generous donations we have received, we were able to bring a Son-Rise Instructor to our home for two days of training. That was a major goal accomplished and filled me with a lot of motivation and greater conviction. With the support of our amazing team, I was encouraged to recruit volunteers for our Son-Rise program. I couldn’t believe the response we received and, as a result, we were blessed with many volunteers to help keep Liam engaged in a full time program. Having volunteers also brought something really special to our program – something that is hard to put into words. Knowing that these people were here to help Liam, to learn and grow as individuals was inspiring. So, thank you Laura, Devon, Nina and Jessica for helping to recruit and train volunteers and a big thanks to Sarah, MoniQue, Soly, and Jessica for many hours spent in the playroom loving and playing with Liam.

Much of the time I feel like I quickly grow used to Liam’s accomplishments, which then become his new baseline of functioning. When I look back and really think about how he’s grown over the past year, it’s really quite remarkable! One childhood rite of passage that Liam accomplished this year was learning to ride a bike without training wheels. This was something that I so wanted for Liam but feared was out of his reach. He just didn’t have the strength and ability to balance – plus, he really didn’t care about losing the training wheels. I heard about a bike camp for special needs kids that comes to Portland for one week in the summer. http://www.losethetrainingwheels.org/
This camp uses specially designed bikes to help kids with a variety of disabilities learn how to balance on two wheelers and is successful in getting a high percentage of kids riding in one weeks time. I signed Liam up but the camp was already full. Fortunately, Liam was the first kid on the waiting list and, as luck would have it, he made it into the camp! It was actually a pretty rocky week for Liam – he was irritable and melting down a lot and then on day three of the camp had a very short grand mal seizure in the morning. He ended up making it to camp that day despite his seizure and actually had the best day of the whole week – go figure. Liam was supported by a team of 4 led by Richard, a teacher at a local elementary school, and three young boys (middle/high school aged). They were so patient and wonderful with Liam. It was a pretty amazing group of people. Despite Liam’s emotional issues, he made it on to a two-wheeler by the end of the week. He wasn’t riding independently very well, but he was doing it. The camp put a push stick on the back of his bike so that we could give him a little support while riding at home and his training wheels were a thing of the past. I took him to the track every day to practice riding his bike and in a very short time Liam was riding independently! He still needs to work on starting and stopping – but he is riding and loving it!

Thinking about growth over the past year brings me to just how much Liam has grown! He gained 5 pounds this year and grew over 3 inches. This is unprecedented growth for him. He is now 52 pounds and (at last measure) 51”. My guess is that he is actually a little taller than that because he’s grown out of all of his pants. We attribute much of his growth this year to starting him on methyl B12 shots. We were able to get back to seeing a DAN! Doctor this year and found a very autism DAN! Friendly pediatrician. As a result, we have been able to implement more biomedical interventions and B12 has been one of the most helpful things we have done. Not only has Liam grown much more than any other year in his whole life, he is stronger and sturdier than every before. We’ve seen lots of good improvements in his gross motor skills and overall confidence in his body.

In addition to Liam’s motor skills and growth, we have also seen gradual improvements in Liam’s language skills since starting B12. I’m sure that some of these gains can also be attributed to his therapy program, but some of the gains are things that have just come out of the blue and are things that you just can’t teach him to say. For example, Liam will say things like “that was fun” or “I like going fast.” He’ll comment about things that he sees “That’s a big car.” He has started asking “wh” questions. The complexity of his sentences has really grown and he uses more words and all parts of speech. His speech has become clearer and it is much easier for him to imitate speech when asked. I remember when I started training our volunteers about a year ago they struggled to understand about 60% of his speech. Today, it is rare to experience someone who can’t understand most of what he says. He still has lots of articulation errors but, despite that, people usually understand him without any translation from me. Liam has also been using language in new ways, ways that seem so normal for a child but definitely not normal for him. The other day Liam and Claire were in the basement playing together and I called down to them to come up for dinner. I hollered “Liam!” to which he responded “what?” “Come up for dinner.” “Okay!” This may seem small, but this was new for him. He even used the same tone and inflection that Claire would use. He gets our attention to tell us about things that interest him and for some reason he loves to point out babies and boys to us. He’ll say “mommy, that’s a boy.” It cracks me up.

Liam has also been able to take part in a lot of recreational classes in our community. This year he has continued with gymnastics and has also enjoyed two different dance classes, a circus arts/trapeze class, and has just started a class called “fun fit kids” that allows Liam to play interactively with other kids twice per week. I’ve grown much more confident in entering Liam into new classes. He has shown the ability to enter new classes without issue and is participating in his classes with little to no support. It’s just great to see him have the opportunity play with his peers and thrive in these settings.

This past holiday season Liam really seemed to get holidays – especially Christmas. He was so excited for Christmas and all of the rituals we have shared over the years. It was so much fun to see his excitement and joy about decorating the tree, hanging up the stockings, etc. He began talking about Halloween (another favorite holiday of his) when school started and talking about Christmas the day Halloween was over. Everyday Liam would say, “go to the pumpkin patch…cut the pumpkin… ride a tractor… get a costume… go trick-or-treating.” He talked about these things and asked about these things over and over with glee in his voice. Then it was “get the tree…put the lights on…get the stockings (which he called the disgustings - that took us a while to figure out)…Santa’s gonna come…open the presents.” Now we are on to his birthday. Liam has enjoyed these holidays for several years, but it was his anticipation and ability to verbalize about it that was new. It was such a wonderful holiday season to finally get to see Liam anticipate Santa coming on Christmas Eve with all the wonder and joy of childhood.

This past year I was introduced by our Son-Rise Instructor to a book titled “The Brain that Changes Itself.” This book is all about the history and science behind the concept of brain plasticity. It is fascinating in that it explores how neuroscientists have discovered that the brain is plastic at any age and capable of miraculous change with specific input. Naturally, the younger one is and the less brain damage one has the easier it is to bring about change but, contrary to previous beliefs, the brain can recover lost function at any age. This book inspired me to seek out new interventions for Liam and led me to neurodevelopmental therapy. We decided to connect with NACD (National Academy for Child Development) to add this type of therapy to Liam’s home therapy program. Prior to our initial evaluation in September I read several books about the history of neurodevelopmental therapy for children with brain damage and tried to learn all that I could. One of the things I learned was that running is an extremely beneficial activity for brain development. So, Liam and I started running together. We began in July and, to my surprise, he just loves running! We often go to a track at a local park and Liam runs with me for a mile (sometimes longer) and then rides his bike while I get in a few more laps. Being out on the track with Liam has been such a positive experience. Out there he gets lots of kudos from perfect strangers who cheer him on and call him “track star” and “marathon boy.” Out there, his disability seemed invisible. Liam and I are still running and going strong. He asks to run every day and most days we have lots of fun. He particularly likes to run when it is pouring down rain. Of course he jumps in every puddle and comes home soaking wet and cold, but happy and content. Running has improved his gait tremendously as well. I feel like I see his brain becoming more organized right before my eyes.

We’ve been at our neurodevelopmental program for 3 months now and just had his three- month re-evaluation. It’s pretty intense and takes up a lot of his time, but he still has adequate time in the play-room and gets to participate in his classes. Getting started was a little bumpy as Liam had to adjust to change in his daily schedule but he quickly accepted the changes and seems to like his new program, which we call “school.” We have already seen some nice changes in his functioning, especially in his motor skills. We are excited to see where this new venture takes us. I guess it is nice to know that there are always new and exciting things to try in our quest to help Liam realize his potential.

Liam will turn 9 years old on February 3rd, which is so hard to believe. We’ve had our ups and downs and I’m sure we will continue to be on a bumpy ride. We look forward to seeing what gains Liam will make in this 9th year of his life. It will be fun to look back over this entry one year from now and remember where we were one year ago! Happy New Year!

Who Is It That Needs Saving?

2009-09-20T08:50:00.001-07:00

In a recent blog entry I wrote about feeling a need to “save” Liam from autism. Feeling that autism would steal his soul and needing to combat this with every fiber of my being. As I wrote the words “save him” I felt a strong urge to erase them. I kept the words because they were true for the time in which I was writing about. In the early years of discovering that Liam had autism and trying to help him, I did feel that I was trying to save him. Today, I feel quite different. I don’t feel that Liam needs saving from anything. I see him as a complete and whole being who definitely has a beautiful and captivating soul. I have been contemplating why I felt that way back in the beginning and why I no longer see things quite the same. All that I can come up with is that autism was a new concept to me. Neither Gary nor I have relatives with a developmental disability. Both of us have actually lived quite “fortunate” lives in that neither of us has known any real type of hardship. We both come from intact families with healthy parents and siblings. Grandparents have lived to older ages. I grew up with strong relationships with my extended family and always knew there were large numbers of people who cared about me and would be there to help me if needed. Gary and I also grew up in financially stable homes and have never really had to struggle beyond the typical difficulties of the teenage years. Autism coming into my life was a complete unknown – something I had never really thought about and something of which I had very little real knowledge. I felt like autism had happened to Liam and I wanted it to go away – to know it was not welcome in this house. I was afraid of it because I didn’t know what to expect. I had no idea what Liam would be like and I had a lot of fear that Liam would be lost to me. The idea of a child who may never speak was a completely foreign concept to me at the time and it terrified me.

I believed with every fiber of my being that I could save Liam from this fate. I could not visualize Liam at an older age with autism. It was just something I could not picture. It’s funny to think about that because there has really been no time in Liam’s life that I have not felt anything but completely bonded to him. I have always felt a strong connection to Liam and I believe I have always understood him, just as much as I understand Claire. Sure, there are times I wish Liam could tell me if he feels sick or is sad or something, but there are lots of times when I wish I knew how Claire felt about something too. Even though she can speak fluently, I don’t always know how she is feeling either because she chooses not to tell me or she can’t explain it in words.

I used to think that it was easy to bond with Liam and know him fully because he was a baby, less complicated than he would one day be. I also felt that it was easier for me to feel more at ease with his autism because as a very young child it was much easier to protect him, to keep him from getting hurt or experience unhappiness. Most of the times when my grief would get the best of me were thinking about what would Liam experience at age 5, age 8 or older. What would it be like to have a son, a child I love fiercely, potentially not have a “friend” or play sports, or have classmates to invite to a birthday party? Grief and fear was very rarely triggered by something I was experiencing in the moment with Liam. Even today, most of my fear, anxiety, and sadness is about the future, the unknown. What will happen to him if we don’t get his volatility under control? What will it be like when he realizes that he is “different?” How will having a disabled brother affect Claire? Will there be a time when she rejects Liam (at least around her friends)? What if he never accomplishes the things I think he can?

Now that we are at age 8, I realize that Liam is really okay. He is a happy child with a full life and he has lots of people that care about him and love him just as he is. He has lots of interests and I don’t think that he feels much unhappiness about his life at all. No, he doesn’t really have what others would think of as “friends.” Claire is his best and really only true friend. He’s never had a play-date that wasn’t arranged by me and facilitated by a therapist or myself. His best birthday parties have had only adults and his sister as guests. He doesn’t get invited to many birthday parties and when he does get invited to one we usually don’t send him because he gets obsessed about opening the presents and is usually pretty agitated throughout. When we have attempted a party, he usually has to be taken home early. It’s odd to be living through things that used to cause me sleepless nights or hit me over the head with unbelievable grief and realize that the fear was much worse than reality. Reality is really often quite pleasant and enjoyable.

With each passing milestone I feel my acceptance for Liam, all parts of him, growing and deepening. He is my beloved son, a human being with gifts and talents and humor and complicated emotions, and weaknesses. There are times that getting through the day with him is tough, mostly because of his moodiness, but nothing ever changes the way I feel about him or my belief in him. I still worry about him. I can’t help but worry about his future. However, now that I have 8 years of daily experience living with a child with a severe disability my fear is less. I still can’t picture Liam at age 12 or 16 or 20. I can’t picture Claire at those ages either for that matter. I don’t know what they will be like. I don’t know what difficulties and triumphs will come into their lives. I do know that we can handle what comes our way. I do know that giving to both of these children what I feel is right in the moment is all that I can do. This life truly belongs to each of them, I am just here to guide them and support them and protect them as I can. How they persevere through the hardships of life is largely up to them. How they choose to accept themselves is really their choice. Accepting them for who they are, no matter what, is my choice.

I continue to have infinite belief that Liam can accomplish anything he wants. I continue to seek out any avenue of intervention that I believe will not cause him harm or discomfort and that I believe offers something to his growth and development. I view it as something he needs me to do to give him the best chance at a happy and fulfilled life. I don’t know what choices he would make for himself. If he could tell me what he wanted, would his daily life look different? I see it as my job to do what I think is best for him and then look to his response to determine when it is time for a change. I feel that I have helped to bring Liam to a point in his development that he can handle many of the things life requires and has to offer – vacations with his family, playing with his sister and other children, running errands, holidays, etc. I have helped bring him to a point where he enjoys talking and works to expand his own communication skills. Today he is observant of his environment, socially motivated to learn, engaged and open to life. I now see my role as letting go of needing to protect him so much. To trust in him, that he will bring good things into his life. To believe that others will love him and see his beauty and believe in him just as I do. Of course not all people will, but that is human nature. I have to work on letting go of that, not letting it hurt me so much, and not fearing, should Liam be treated unfairly, that he can’t handle it. In letting Liam out into the big, sometimes scary world, I believe that I am allowing other people, people just like my former self, who have no experience with disability and who may fear it, to know this beautiful person – to see that there is nothing to fear, he’s just like you or me. Perhaps if I had had the opportunity to meet a “Liam” in my childhood, I would have never felt the need to save him.

Thinking about all of this has begged the question “Who is it that needs saving?” Having Liam has actually saved me from a life of mediocrity. Yes, there have been tough times, times of extreme anguish, grief, loneliness, fear, poverty, anger. My former life was probably more comfy. Discomfort and stretching the boundaries of my beliefs, attitude, and scope of the world around me has given me a sense of strength that I would not have if it were not for Liam. All of my adult life I have struggled to find my true passion. I have wondered about my purpose. I didn’t choose autism, I feel that it chose me, and because of that I have a greater passion than I have ever known.

Parents want one simple thing for their children, happiness. Expecting parents commonly say, “I just hope for a healthy baby.” Why? The very idea of a baby with an illness or disability evokes fear that your child’s life will be something other than happy. When something comes into your life that you feel threatens your child’s potential happiness it causes you to reevaluate how you live your life and what is important to you. Suddenly, things that seemed so important disappear. For me, this meant not really caring about how my house looked, or if I had a cute haircut or stylish clothing. I don’t mean to belittle the importance and value of caring for yourself and wanting nice things, but when it comes right down to it, I would gladly give up anything to have the ability to do for Liam what I believe is in his best interest. We have had to give up lots of things. Even though I earned a masters degree, it was easy for me to put my career on the back burner because Liam needed me to be home. Gary and I have enjoyed renovating old homes as a hobby and, pre-Liam, we spent a lot of time fantasizing about our future “forever house.” It’s been easy to let go of wanting in this way, Liam’s needs are more important, more invigorating. Now our idea of a good future home is one that is simple, needs little maintenance, far away from a busy street, and cheap. Early on in trying to provide for Liam’s needs Gary and I had to sell almost all of our furniture to afford treatments for him. We held a garage sale and felt like we hit the jackpot when we made over $700. Easy. I didn’t care about parting with objects and living sparsely – less to take care of, to occupy my mind. Almost in an instant, our priorities changed and my joy came from feeling like I was taking control of what felt like an out of control situation. There have also been decisions that have been hard, but necessary. In the past we had to limit our holiday celebrations to small gatherings, usually held at our home, because Liam could not handle long days with no structure and lots of sitting around visiting. He needed his routine and lots of 1:1 time. I like sitting around, eating, drinking, and visiting with family, but with Liam melting down and/or worrying about when he would next melt down, holidays as usual were not fun for us or for Liam. Playing “creative finances” each month to try and make ends meet is a stress, but I also recognize that even though the way we are raising Liam taps our resources greatly, this is our choice and we are happy with it. Having autism come into our lives has forced us to live in the present. To make choices and decisions that work for us in the moment and to let go of worrying about the future or what others might think. It is kind a kind of freedom that I didn’t know before. I think I may have looked upon someone living their life the way we live today with a sense of sadness or pity, wishing that things were easier or that they had more. I now look at it as being really in touch with your values and living your life in accordance.

My concept of a “good life” has broadened. I believe that Liam can have a good life even if he were to stay exactly as he is today. This would depend upon my attitude and definition of a “good life.” If I limit my idea of this to a more conventional definition, I would probably feel pretty pessimistic and fearful. What comes of Liam is not in my control but my attitude about him is. It’s really all I have control over. I struggle with my attitude every day. It’s hard not to want more when your child is faced with a pervasive disorder. It’s hard to conceive of a happy or good life for Liam as a teenager or adult because we have not experienced that phase of life, it is foreign to me. I have experienced growing with this child through lots of phases of life and I know that each phase has been hard but also wonderful. Why should that not hold true into the future? So, today, my attitude is that anything is possible because the value of Liam’s future is in the eye of the beholder. I can choose to live in the moment, making decisions that work for him and for our family even if these decisions are hard and involve sacrifice. I can let go of old dreams to make way for new dreams. I can choose to be happy and strive for a great life even in the face of hardship. I can hold acceptance for Liam exactly as he is forever while also having eternal belief in his capabilities. I don’t have to choose between these two ideas. I can no longer fear autism. It is for all of these things that I can truly say that I am the one who has been saved and I owe this to my son.

Movie Review

2009-09-16T22:25:00.000-07:00

Over Labor Day we took the kids to a movie. This is a rare event because we don’t always know how Liam is going to handle the theatre experience. The results have been mixed in the past depending on what the movie is and what kind of day he is having and what he has eaten, etc. But since we went to this movie I thought I would review it.

The movie we went to see was Up, the latest Pixar film. It was playing at a theatre that is part of a community center in a renovated elementary school that has bars and a restaurant and overnight rooms and a soaking pool and banquet rooms and one gym that is still a gym and another gym that was converted into a theatre, but instead of theatre chairs it had rows of sofas and comfy chairs and the best part is that you can drink beer and eat pizza while watching the movie. So, going into it I knew I was going to like this movie.

We went on Sunday before Labor Day and the movie started at 5:30. I was figuring we would get there at around 4:30 but didn’t account for Angie’s “getting ready” time so we didn’t really get there until 5:00 and it was already crowded. I was starting to not like this movie because the lines were long and it was filling up fast. Sure enough they sold out before we got through the line. Liam was already starting to have some trouble tolerating the wait in line and we were bracing ourselves for a meltdown as we told the kids we weren’t going to see the movie today. To our surprise, Claire was the one to lose it. She couldn’t understand why we couldn’t see the movie and began crying and didn’t want to leave. This of course always starts Liam on the same path but we decided to go to the restaurant and eat dinner. For Liam much of the time all you have to say is “fries” and he’s OK if he’s not too hungry to begin with. If he’s too hungry then waiting for the fries can be painful as he repeatedly smacks the table or knocks over saltshakers while saying, “Fries? Fries?” over and over. So, although I wasn’t enjoying the movie at this point, we successfully distracted both kids with dinner out and a promise to come back earlier the next day to see the movie.

The next day we came earlier and got through the line pretty quickly. We had pizza, popcorn, soda, and beer and we staked out a couch all to ourselves that had a table in front of it. So far so good. Liam sat on the aisle side by Angie. Claire was in the middle and I was on the other end. When we take Liam to movies it’s always good to have an exit strategy. We decided that if he needed to leave it was my turn to take him. He was already restless but so far I was enjoying the movie because Claire was easy to sit by and I had a beer in my hand. We just had to wait for the movie to start to see how Liam would do.

When Liam is restless or bored in a theatre or restaurant the first thing he starts saying is “Potty? Go potty? Wanna go potty?” And of course this time was no different. I had to take him knowing that this was just the first of many trips to the bathroom. In the bathroom Liam will stand at the urinal and flush several times before he’s even done and then walk to any other toilet with his pants around his ankles flushing as many times as he can before I am freed up enough to stop him. It’s hard to get him focused in a public restroom because there is so much to play with. He loves turning the faucet on and off and if there is an electric paper towel dispenser it is hard to get him away from that. All in all Liam is not very eco-friendly with the amount of water and paper that is wasted in public restrooms.

We got back to the couch and I settled back in with my beer. I took one sip and there it was again, “Potty? Wanna go Potty?”
“You just went Liam.” I said.
“What if he has to go poop?” Angie said. I knew she was going to say that.
So back we went and this time I just sat him on the toilet because I knew he wasn’t going to do it himself. At home he is fine by himself but like I said a public restroom is just too distracting. He sat there and started unrolling the toilet paper until I stopped him and he said, “All done?”

Back to the couch and the movie was starting. Oh, and I grabbed another beer on the way back even though I was barely started with my first one. I just knew I was going to need it.

So, Up is about an old man who is alone and is living by himself in an old house surrounded by development and he refuses to leave when developers want his property. The old man is voiced by Lou Grant from The Mary Tyler Moore Show. Lou Grant gets this idea to tie a bunch of balloons to his house and…
“Potty? Go Potty?”
“Come on…”
“Make sure you sit him on the toilet this time.” Said Angie.
“I did last time. He didn’t go. Come on Liam.”
“Yeah go potty.”

We went. Still nothing.

We came back and the movie was really getting interesting. There was a lot of dialogue and those parts were hard for Liam. If he wasn’t into what was happening on the screen he would kick the couch in front of us or smack his hands on the table or flop around or try to slide down to the floor. But there were exciting parts too and that is where Liam would start to get into it. The house floats up and away and there is a little kid that stows away on Lou Grant’s house and they end up in this weird land and get chased by a pack of dogs that are trained by this old explorer that lives in this land and…
“Potty?”
“Yeeees….”
This time we had success so I knew that I could say no to any more potty requests from here on out. I was really enjoying the movie and I didn’t want to be interrupted any more. Claire was also liking it and so was Angie. I was pretty sure Liam wasn’t going to make it through.

We got back to the couch and I was a little lost but still liking the movie. Lou Grant was having to match wits with the old explorer that turns out to be evil…
“Potty?”
“Nope.”
“Potty? Potty?!” Liam was starting to get louder.
“Liam, you don’t need to go.”
Liam started smacking the table again and it was becoming apparent that this was just going to escalate if I didn’t take him out of there. I won’t spoil the end of the movie for you because I don’t know how it ends.
“Come on Liam.”

We left the theatre and walked down the hall past the restroom.
“Potty?”
“No Liam.”
“No Potty.”
We left the building and got in the car. I figured we would drive around a little. I had to go to the bank anyway so we could kill time until the movie was out.
“Movie?” Said Liam
“Are you serious?” He was just not interested in the movie and now he wanted to go back in. I thought about it for about two seconds and said, “No let’s get some fries.”
“Fries.”
We drove to the bank first and that was a mistake because Liam had it in his mind that we were getting fries and did not anticipate any other stops before that. He started screaming and hitting and kicking the back of the seat in front of him.
“We are going to get fries buddy. We just have to stop here first.”
“Fries?!”
“Yes, we will okay?”
“Fries.” He was calming down a little but still unstable.

I finished at the bank and we were on our way to Burgerville for fries.
“Fries? Fries?!”
“Yes Liam We are getting fries.”
“Aw man…” He must have been hungrier than I thought because he was just really agitated.
We got to the drive through and I ordered the fries. There were a few cars ahead of us so it was taking longer than Liam’s liking. He was hitting and kicking the seat again and screaming, “Fries?!…Aw man!”
We got the fries and I knew once he ate them he would start to calm down but I didn’t dare give him the whole bag because I knew in the state he was in he would just throw them or dump them on the floor. I gave him one fry and he ate it. I started driving back toward the theatre. I gave him another fry and he threw it my head. I gave him another one and he ate it. He did pretty well for the most part but about every fifth fry was pinging me in the back of the head. He was a pretty good shot.

By the time we got back, the fries were gone and Liam was over his meltdown. We pulled into the parking lot and Liam said, “Movie?”
“Yep.” I said thinking that it was probably over by now. And even if it wasn’t I knew Liam wouldn’t sit through the rest of it. I was hoping I timed it right. We went back in the building and walked down the hall toward the theatre and there were Angie and Claire coming out. I did time it right.

So overall I give the whole movie experience two out of five stars but I’m thinking that score will go up as soon as I am able to rent it and sit in my basement with a beer watching it by myself. I’m really looking forward to that.

Glut 1 Deficiency - Could it be? Part 5

2009-09-11T21:41:00.000-07:00

We went on working with our naturopath, early intervention services, and developing a home therapy program for Liam, intervening in any way we could. We hired a young woman named Katie, who was one of Liam’s day care providers, to be a “nannypist,” someone who would act as both a nanny and a therapist. Katie proved to be a wonderful addition to our lives. She was so dedicated to Liam. She read all of the books that I suggested and was just as driven to learn about autism and help Liam as I was. She was one of the only people in my life that I could really talk “on par” with about Liam, for she really understood what and why we were doing what we were doing. I trusted her implicitly and Liam adored her. We hired an ABA consultant who helped us develop an ABA home program. I began to work part time and Katie watched Liam and worked with him on the days that I was at work. Katie and I developed an eclectic program that we rotated throughout the day, including various interventions such as ABA, Floortime, and sensory integration. Most of our programming was pretty grass roots with Katie and I reading about how to do these therapies and just diving in, doing the best that we could. We couldn’t afford much in the way of consultation and, at the time, only had twice monthly meetings with our ABA consultant. I know that, should we have been able to afford more guidance and should I have understood Liam’s needs and the difference between all of these various interventions, our program could have been much stronger and more effective. Hindsight is always 20/20 and I know that. Despite this, I felt good about what we were doing and Liam definitely benefited.

Katie had some long days with Liam and we decided to enroll him in a gymnastics class and began taking him to the pool and the park to break up the day and allow them to get out of the house. One day I came home to find Katie feeling a little blue. “It’s just so hard to see Liam with all of these other little kids and to realize all of the things they can do compared to him” Katie said through tears. It was hard to hear these words from her – feelings and thoughts that I lived with, spoken out loud. It was hard for me to comfort her because I was fighting hard to conceal my deepest feelings about Liam. I still felt that in some way if I spoke these feelings out loud I was somehow betraying him. In that moment I also felt closeness to Katie that I don’t think I felt with anyone else in my life at that time; someone who loved Liam like a mother, someone who felt and was willing to speak about the pain I lived with each day. Katie and I also shared some joyous moments that I don’t think anyone but us could have really understood. We both knew Liam intimately. We knew things about him that no one else could possibly know. When Liam was about three years of age I pushed his early intervention team to evaluate him for Apraxia, a motor-based speech disorder. I had done a lot of reading about Apraxia and felt that Liam demonstrated many of the symptoms. In particular, Liam really couldn’t repeat anything we said. He would try, his mouth would move but nothing or the wrong thing would come out. He was really much better at self-generated speech. At times, words and sometimes whole phrases would pop out of his little mouth. I was stunned one day to hear this little child say, “dive da cah” as he pushed a little car around. This from a child who never even said mama or dada had just said a whole phrase that was appropriate to what he was doing. We never heard that phrase again. I tried to get it out of him, but nothing. On another occasion, Liam said, “More bubbles” when Katie was blowing bubbles with him. We stood and looked at one another shocked. We were working on him saying “buh.” Just as before though, we couldn’t get him to do it again. In fact, it would be many years before I would hear Liam actually put two words together. Katie and I shared these little victories together as well as the pain of not being able to get there again with Liam. Other symptoms of Apraxia that Liam showed were not having a consistent word for something. For example, for the word “open” Liam would sometimes say “Oh,” other times it would be “Oh-pah,” and yet at other times it would be “Oh-pah-pah.” It was maddening. He also dropped the endings of words and could not say a lot of vowel sounds. He couldn’t stick his tongue out in imitation or move his mouth, or any part of his body for that matter, on command. So on this day when Liam was three, Katie and I were there for his long awaited Apraxia evaluation. In my inexperience and naiveté I thought that if Liam were deemed Apraxic we would somehow get some type of speech therapy that would change the struggle we were in to help him learn to talk. I had mixed emotions about this evaluation. I hadn’t been too impressed with the speech therapists that had been working with Liam largely because he wasn’t making any progress and they didn’t seem to have an explanation for this or a plan. Some of them could not even get him to cooperate and participate in the session. I was desperate to help him develop verbal communication and I was angry, maybe unfairly at times, that no one seemed to have a strategy or plan for how we were going to get Liam talking. To my elation, the speech therapist that came to do this evaluation was amazing. She got Liam to sit in a chair, imitate her, and move his tongue. He made more speech sounds in that hour than I think I had heard come out of him over the past month. She also got him to lick a dumb-dumb sucker. Now if you can imagine two grown women (Katie and I) clutching one another, holding our breath while watching all of this. We were both thinking “oh there is no way Liam is going to lick that sucker.” Liam wouldn’t touch candy and believe me I had tried to get him to lick a sucker. I was thinking, “This woman doesn’t know what she’s up against with Liam. Most kids will work for a sucker but not this one.” To our great surprise there he was LOVING this sucker and working hard to move his tongue up, down, side to side, in and out. Katie and I were quietly jumping up and down cheering “Oh my gosh! I can’t believe he’s doing it! Way to go Liam.” We didn’t want to distract him and end this magical moment, but we were bursting inside. We were in total awe of this woman and what she had accomplished with Liam on that day. We were celebrating Liam big time and my belief that he could learn to talk was reaffirmed. We just needed the right therapist and the right therapy. I can honestly say that Katie is one of the few people in my life that I have shared this kind of simple, somewhat strange, joy with. It truly takes a special person and unusual circumstances to get that excited about a child eating a sucker.
Liam was tentatively diagnosed with Apraxia from this evaluation, but it really didn’t change anything about his actual speech therapy. I fought the school system and paraded him around to one private speech therapist after another until finally giving up and home schooling him at age 5 under the guidance of Emily, an amazing savior who brought Verbal Behavior into our lives, which was the first intervention that really worked for Liam’s speech development and gave him his voice.

Katie stayed with us until Liam was 3 ½. She left with her husband to travel around South America and then spent the next several years teaching English in China. As the days approached before her departure, I tried hard not to think about life without her. I couldn’t comprehend losing this person, she had at times been my life line, my confidant, my supporter and someone I trusted to carry out my almost fanatical desire to help him when I could not be there myself. When she left I suffered a blow. I felt like I had lost my right arm. I was lonely and felt isolated. I missed her deeply. How could I do this without her? Liam had lost his friend. What was he thinking about where this special friend had gone? After two weeks of crying and feeling sorry for myself, I dusted myself off and got back to work. Liam needed me to be strong and we would survive. We were off to new adventures, new special people that would grace our lives with their presence and bring new gifts in ways that I could not have anticipated.

Throughout these early years I felt that I was running a race against autism with the prize being Liam’s soul. I knew that I could be a fierce opponent if I set my mind to it … but there was one little problem. I was a mere mortal who got weary from time to time and needed to sleep and eat and work. Autism was a savage beast that needed no rest. I found it hard to rest. I stayed up reading until 2 am every night, researched by Google during the day whenever I had a free moment, and spent endless hours trying to play with Liam on the floor. I felt that I had to make up for the hours that I slept or took a shower or ate, otherwise Autism would win I would lose my child forever. There was no way I was going to let that happen, not to my baby. When I was home, no matter what I was doing, I was constantly observing Liam. If he began to engage in self-stimulatory behavior such as spinning a bowl, opening a door or drawer repetitively, or sticking his fingers in a register vent for all of eternity, I would get down on the floor and join him. There we would sit, Mommy and Liam side by side in the kitchen opening and closing drawers together. At some point Liam would notice me or my drawer and would briefly shift his attention to what I was doing. A connection! There it was. He noticed me. I would smile and tickle him “yeah little one, here I am buddy. It’s mommy.” Now that I had his attention, what could I do to keep it going, to make what I bring to the drawer more interesting? I would begin to open and close my drawer faster and faster, making silly sound effects. Sometimes he would ignore me and go back to opening and closing his drawer, but other times he would imitate me or just giggle and watch. The best times of all were when he would look up at me and smile so as to say “hi!” In those moments I felt like I was on top of the world. Liam was playing with ME! This was our version of patty-cake, albeit a little unorthodox, but we were interacting; I was playing with my distant little child. I viewed what I was doing as changing the way his brain was getting wired. I felt that I needed to get in there and make these activities social, interactive and to not let any opportunity go by if I was going to be successful at wiring his brain to be interested in the outside world. I knew that his behavior held some meaning to him (at the time I didn’t quite know what that meaning was) but I felt that if I didn’t intervene, it would never hold a meaning that he could share with others. It was hard for me to relax, socialize, to think about anything else. Time was of the essence and if I slacked off autism would pull ahead and I could lose him forever. That was not going to happen on my watch.

I was feeling optimistic. These interventions seemed to be working. Liam was beginning to comprehend some words and simple directions. He knew his name. He was starting to use some gestures to communicate. He was eating and growing better than he had been during his first year of life. There was still something that bothered me that stayed in the pit of my stomach and yearned for an answer. What had happened to my child? It seemed like all of the medical problems, “anomalies” if you will, could not truly be separate, unrelated conditions. I had never met another child with autism that had trigonocephaly and failure to thrive and strabismus. Many children on the spectrum had intestinal problems, ear infections, and seemingly weak immune systems. Those things seemed to be common, but Liam’s constellations of medical problems seemed unique to him. I had this deep intuition that Liam’s problems were related, that they added up to some known medical condition, and if we could just find out what it was, maybe, just maybe we could help him even more. Maybe we could save him. One day at work I had some free time and punched into Google “trigonocephaly and autism.” To my shock and horror up popped some hits. “Mild Trigonocephaly: Is it an Autistic Head Shape?” and “Trignoncephaly Associated with Symptoms.” There were a handful of articles on pubmed, a reputable site for medical journal articles. I was only able to read the abstracts as I didn’t have access to the full articles, but these abstracts described other children with mild trignocephaly who had language delays, motor problems, hypotonia, strabismus, hyperactivite, behavior problems, cognitive deficits, autistic features, and on and on. While they didn’t reference anything about failure to thrive or diarrhea, they otherwise described what we were experiencing with Liam developmentally. The articles described this head shape as a subset of autism and stated that there were known genetic defects responsible for this head shape. I felt sick. I couldn’t breath. I sat there motionless, in disbelief. I read the absracts over and over. My heart sank. Tears were coming and I couldn’t stop them. How could this be? We saw the geneticist and the neurosurgeon. We got the CAT scan. We were told, “mild forms of trigonocephaly were not known to be associated with developmental delays” that Liam’s development was not a result of this head shape. Here I was reading the exact opposite. There were other children just like Liam who also had mild trigonocephaly. Once again I could not understand how I, a mere first time mother, could find this information and no one else seemed to know about it. Once again I was mad at myself for not plugging both trigonocephaly and autism into Google earlier. How stupid could I be!

A Japanese doctor who began investigating children with autistic features, developmental delay and mild forms of trigonocephaly first published the articles in Japanese. This doctor had done spect scans to look at the blood flow in affected children’s brains and found reduced blood flow to the frontal lobes. He also did skull x-rays that showed raised intracranial pressure due to the narrowing of the forehead which puts pressure on the brain. He had performed surgery to release the closed suture in a handful of kids and these kids were showing some improvements. Liam was already two years of age at this time. Was it too late for him? Should he have this surgery? Would I want to put him through that? How could I not? I was overwhelmed with emotion. I quickly printed off all of the abstracts and drafted a quick letter urging his pediatrician to help us explore this issue. I faxed it that same day to every doctor we had ever seen. Our pediatrician did respond saying that it was “interesting” and “if we wanted he could refer us back to the neurosurgeon.” Hell yes we are going back to the neurosurgeon! I want an appointment ASAP! We got in quickly but the neurosurgeon said that this was new information to him, that “things are different in Japan.” He could repeat the CAT scan and we could see a different neurosurgeon in the craniofacial disorders clinic to follow-up because he was no longer going to be seeing craniofacial patients. He maintained that he would not operate on Liam. I don’t really remember what all he was saying because I was still feeling numb and uncertain of what I was wanting. What I heard was “blah, blah, blah, can’t help you. Blah, blah, blah, not interested.” We were on to a second opinion. I was not too interested in seeing another neurosurgeon in the same practice. What was the likelihood that this person would go against the first neurosurgeons recommendations, or lack there of? We were going to find someone from some other clinic and get his or her opinion.

We traveled to Seattle a few months later to see a reportedly well-known craniofacial specialist at Seattle Children’s Hospital to gain a second opinion. In advance I had sent him Liam’s medical records, the journal abstracts from pub med, and Liam’s CAT scan films. I waited in anticipation for this appointment, partly nervous that it would end like all the others, partly excited that this could be a turning point for Liam and for us. My hopes were once again dashed as he too said, “blah blah blah, can’t help you. Blah, blah, blah, not interested.” Again I don’t really remember what all he said, other than something about it being interesting, not his experience, and that there are no long term studies on the outcome of operating on a child with mild trigonocephaly and developmental problems to determine if the potential benefit outweighed the risk. We went home somewhat deflated, but somewhat relieved because it would be hard to decide to put Liam through such an invasive surgery. I was still mad, mostly at the situation. I knew that Liam’s trigonocephaly was related to his problems. In my mind there was no way it could not be related. It just pissed me off to realize that there was nothing I cold do about it, no clear path, and no previously charted course. I dropped it for the time being and went back to focusing on the things I felt I could do, the things that seemed to be working.

To be continued.

Manly Men

2009-09-03T22:12:00.000-07:00

It was two weeks before Christmas 2008. Liam was seven, Claire was five, and Angie and I were…well that’s not important. We were approaching the weekend and gearing up to get a Christmas tree. Although I like Christmas, I have a hard time with things like shopping, and decorating, and baking, and wrapping, and all the stuff that we are supposed to be as excited about as the kids are. The one thing I do like is getting the Christmas tree. I used to not like to get the Christmas tree because we used to just go out and buy one from a lot. The last time we went to get a lot tree was about four years before. I remember Angie and I at the lot with Liam and Claire all bundled up. Liam was four and Claire was two. We spent about an hour there looking at all the trees to find the perfect one. When I say we, I mean Angie. I basically stopped caring what tree we got after the first three times I was chastised for my suggestions:
“How ‘bout that one?”
“No, that’s a dog dressed up like a Christmas tree.”
I found out very quickly that I have no taste in Christmas trees so I would just silently tag along with the kids while Angie selected the absolute best tree in the northwest.
I would just say to myself, “This would only take five minutes if I were here by myself.”
Then I would answer, “Yes but do you really want to be accused of Ruining Christmas by picking the wrong tree? Remember, you used to decorate your overgrown philodendron for Christmas back when you had your own place.”
“Yes, my own place…(sigh)…but your right. I need to just smile and nod.”

So after Angie selected the perfect tree we took it up to the tree lady, and the tree lady said, “Eighty five dollars please.”
“Ha, funny” I said.
The tree lady didn’t laugh. She just stared at me.
“Oh really?” I said. “Eighty five dollars?”
“Yes sir. It’s a real beauty.”
“Yes I know. We live in the northwest. We’re surrounded by them. I could just go out and hit one with my car and drag it home and it wouldn’t cost me anything… if you don’t count car damage repair.”
“Well, sir you are welcome to do that.”
“I think I will. Come on Honey.”
As we were leaving Angie said, “So, what’s your plan here?”
“We’ll go to a U cut place tomorrow and cut one ourselves. The tree lady doesn’t have to know we didn’t run it over.”
“Are there U cut places around here?”
“They’re all over. I think there is one on Sauvie Island. It’s gotta be cheaper than eighty-five bucks. That’s just ridiculous.”

So I looked it up when we got home and sure enough there was a U cut farm on Sauvie Island. We had been going there for years to hike, buy produce, and get pumpkins for Halloween. The kids loved it and so did we. I don’t know why we never thought of it before.

We drove to the U cut farm the next day. They give you a tree saw and a cart and let you loose on the unsuspecting trees. Liam loved it. He wanted to carry the saw and I let him until it was clear that he wanted to saw everything in his path; every tree, the cart, his shoe, a squirrel. I figured I had better hold the saw until Angie found the perfect tree. We didn’t really mind it taking so long because we all just loved being out there walking through the trees and getting into the whole experience. When Angie finally did choose the tree she wanted, I cut it down with Liam “helping” me hand over hand with the saw. He helped me load it into the cart with great glee. We took it back to the tree lady who bundled it for us and charged us forty-five dollars; forty-five dollars for the tree and the experience. This is the first year I started to really get into Christmas, and we did the U cut tree ever since.

So, back to Christmas of 2008. Two weeks before Christmas and we were ready to get it going when Angie got a call from a family member in Indiana. Her Grandpa was really sick and not expected to be around much longer. We decided that Angie would go out to Indiana to see her grandpa for the last time, and since he had never met Claire, Angie would take Claire with her. The timing was bad but it was what it was. It took a day to get our minds wrapped around it but we figured they would go for five days and be back in time for Christmas.
“I guess that means Liam and I will have to get the tree by ourselves.” I said.
“Oh.” I could tell what she was thinking.
“I know.” I said. “You think we’ll get a crappy tree.”
“Um…yeah.”
“Well you know what? You’re right. I know there is no chance of Liam and I picking the tree you would pick, but you’re gonna love it anyway because we picked it out.”
She let out a big sigh. “Yeah. I know I will…but just try, OK?”
“Of course.”

We took Angie and Claire to the airport and Liam and I started driving back to the house.
“You know what this means buddy?” I said to Liam in the back seat.
“We are on our own, man.”
“Own.”
“Just two manly men hangin’ out for five days.”
“Man.”
“We can do whatever we want. We can hang out in our boxers…”
“Boxers.”
“We can get movies from the movie store…”
“’vie store.”
“And on Saturday you and I get to go get a Christmas tree.”
“Kismas tree! Yeah. Kismas tree!”
“You want to get a Christmas tree?”
“Yeah! Kismas tree!”
“OK then, we’ll go on Saturday.”
This was Thursday so all I heard for the next two days was “Kismas tree? Kismas tree?” accompanied by two of the biggest brown eyes looking straight at mine. Liam has big eyes anyway, but when he really wants something he has an uncanny ability to make them twice as big and twice as irresistible.

We made the best of our time together as manly men. We reinstituted the pants optional policy I had in my single days and rented manly movies like Thomas The Tank Engine and The Brave Little Toaster. We ate chips on the couch and drank single malt scotch and smoked Dominican cigars…well it was really apple juice and gluten free pretzel sticks but it felt manly. All the while I was deflecting Liam’s intermittent requests to go get the “kismas tree” until Saturday.

Saturday came around and when Liam and I woke up the outside world was covered in snow. Not only that, but more snow was falling from the sky at a very rapid rate. I won’t say it never snows in Portland but we rarely get snowstorms like this and never at Christmas time. It usually just rains for Christmas. Liam knew this was Christmas tree day because I had made that clear the day before after every time he said “kismas tree.” He was very excited to go and I was having serious doubts about driving anywhere. The Jeep wasn’t running and all we had was our little Saturn Wagon to venture out in. I wouldn’t have been too worried if I could drive the Jeep, because it had four wheel drive, but the Saturn only had front wheel drive. Looking out the window, I saw no cars on the road.
“Kismas tree?” Liam said with the same intensely big eyes and an excited grin on his face.
“Buddy, I don’t know if we can go. Look at the snow outside.”
“Snow…kismas tree?” Still excited.
I knew if I explained it to him it would take a while for him to understand and then he would probably throw a fit but I also knew he would get over it, but looking into those eyes and looking at how excited he was, I was starting to get as equally disappointed as I knew he would be. I started to think; “Is it that bad? I know there are no other cars out there but people in Portland panic and the city shuts down for even a little bit of snow. Most people don’t know how to drive in snow but I do. Visibility is pretty low but if I just go slow and steady, take my time it should be fine.”
I know this was a bad decision but I didn’t have a bad feeling about it when I said to Liam “OK buddy, let’s get ready to go.”
Liam lit up like a kismas tree and we went to get on all of our gear. We put on our boots, gloves, hats, scarves (Liam chose one of Claire’s manly pink scarves), and coats. We stepped out on the porch into the snowstorm and quickly stepped back inside. It was colder than we thought so we put some pants on, and we were on our way.

We got in the car and as I pulled out into the crunching snow with Liam chanting “Kismas tree. Kismas tree” Between giggles, I was envisioning the newspaper headlines: “Manly man and son trapped in snow covered car for three days surviving off accumulation of French fries and raisins thrown on the car floor by resourceful son months before.” I went slow and easy squinting my eyes thinking that it was helping me see through the accelerating snowflakes. It usually took about fifteen minutes to get to Sauvie Island but I was going so slow that I think it took about an hour. There were literally no cars on the road except us. Liam was clearly not worried in his kismas tree nirvana. I told myself I wasn’t worried and I mostly believed me. We worked our way over the bridge and up the country road to where the tree farm was. When we got there, there was nobody there. There was a sign though. Liam and I had to get out of the car to go read it. It said, “Tree farm closed. Going out of business.” We just stood there in the pounding silent snow, cold and silent…standing…staring…cold…
“How could they go out of business?” I thought. “It’s Christmas.”
“Kismas tree.” Said Liam.
“No kismas tree, buddy…it’s closed.”
“Closed.”
“Yep, closed.”
“Kismas tree?”
“Let’s get back in the car.”
“Kismas tree?” His voice was beginning to have a telltale pre meltdown quiver.
“Liam, I will find you a Christmas tree today, OK? We just have to look a little more.”
“Look.” I think something about the snow helped him stay calm. He surprisingly accepted what I had t say and went back to his “kismas tree” chant.

I started to drive us back along the silent, snow covered road wondering where I was going to find a Christmas tree. As I drove past the farm we always go to for produce in season, and for pumpkins in the fall, I could barely make out through the ever-increasing snowflakes, rows of green. The farm would usually shut down after the fall harvest but there was definitely activity there and those were trees in the parking lot. I pulled in and Liam and I got out of the car. The tree lady greeted us warmly and seemed happy to see us.
“Did you guys drive all the way out here from the city?” She smiled.
“Yes we did.” I said in my most manly voice.
“Wow you guys are brave.”
“Yes we are.”
“I haven’t seen many people out and about today. It’s a crazy snow storm but I love it.”
“Yeah it’s fun but maybe not the best idea to be driving out in it right now.”
“Oh, you’re fine. Can I get you some hot cider?”
“Want some cider Liam?”
“Ci…” Said Liam.
“Yeah hot cider. Want some?”
“Yeah”
“I guess two ciders then.”
“I’ll be right back”
While she got our ciders, Liam and I went over to look at the trees. They were already cut of course. They were lot trees but at this point we just needed a tree and I was betting they wouldn’t be eight five dollars.
“Here’s your ciders.” The tree lady said still smiling as she handed us each our cups.
I took a sip of mine and Liam poured his out into the snow.
“Liam come on.” I said. “I’m sorry he um…”
“Oh that’s OK.” She said. “He got what he wanted out of it.”
Liam giggled and watched the steam rise as the cider melted the snow.
“…You’re the coolest tree lady ever.” I said.
“You’re still gonna pay for it of course.”
“Of course.”
“Well should we look at some trees since you came all this way?”
We started looking at the trees that were half covered in snow and were getting colder by the minute; at least I was. Liam doesn’t always seem effected by cold and he has a pretty high pain threshold. I really didn’t want to stay too long picking out a tree but I didn’t want Angie to be completely disappointed in whatever tree we got. Then I got a brilliant idea. If I let Liam pick the tree all by himself there was no way she could be disappointed if she knew he chose it.
“Liam, which Christmas tree do you like?”
“That one?”
“No, that’s a dog dressed up like a Christmas tree.” I did learn something over the years.
“That one.” He said pointing to a decent sized tree.
“We’ll take that one.” I said to the tree lady. “How much is it?”
“That one’s forty five dollars.”
“That’s a good price. Same as the U cuts”
“That’s because they were all grown on the island.”

We paid for the tree and tied it to the roof of the car and finished just before my fingers were about to fall off.
“Have a safe trip home.” She said warmly.
“Thanks a lot tree lady.” I said as I finished securing Liam in his seat.

We inched our way along the road just as we had on the way there. The snow never let up and it took another hour to get home. Liam was all happy babbling and giggles the whole way.

When we got home we pulled the tree into the house and set it in the stand. Liam had to be right on in it with me from “helping” carry it in the house to “lifting” it into the stand and helping turn the screws on the stand. When we were done we had a pretty decent tree mostly straight in the stand emitting the Christmas tree smell.
“Deck?” Said Liam.
“Oh no buddy, we have to wait for mommy to decorate it. We would definitely screw that up.”
“Screw.”
“How about we build a fire?”
“Fire! Yeah!” Liam loves fire. Probably a little too much but it really makes him happy when we have a fire in the fireplace.
“How about some popcorn too?”
“Yes.”

So we sat in front of the fire in our boxers eating popcorn reflecting on our adventure.
“I’d say it was a pretty manly day, huh buddy?”
“Man.”

Glut 1 Deficiency - Could it be? Part 4

2009-08-24T20:42:00.000-07:00

Back on the medical front, Liam continued to struggle with weight gain, frequent illness, strabismus, and now had developed severe diarrhea. He would have diarrhea after anything he ate (which wasn’t much) and it often contained mucous and undigested food. It was foul. It could happen anywhere, anytime and we always had to carry extra clothing with us because it could explode out the top and legs of his diaper, making a huge, disgusting mess. We had switched from seeing the nurse practitioner to the pediatrician who had last consulted on Liam’s ridge at 9 months, as we believed that he recognized the problem and perhaps was more knowledgeable. He was the first doctor to bring up the possibility of Liam having an inborn error of metabolism. This meant that Liam’s body might not be able to properly break down and utilize food, resulting in him not making or absorbing vital nutrients. The doctor ran some tests. He told me they would be looking at Liam’s amino acids. “Amino what’s?” I said. He went on to talk some gobbeldygook about amino acids being proteins that are the building blocks of life. I still had no idea what he meant but was fully supportive of more testing. The results came back not quite normal, but not specifically indicative of any known metabolic disorder. Of course this was the case. Another anomaly. Great.

At meal times, if Liam ate anything, he would often end up staring off into space. Well, not space exactly. It seemed as if he was staring at something very specific, just something that we could not see. He would stare very intently and laugh and laugh. We would hold our hand up in front of his eyes and he would reach up and push our hand out of the way or look around it, staring fixedly at this unknown thing. We used to say, “Liam sees angles.” We thought this was cute. He was so quiet and serious as an older baby and, with this behavior, we tried to find some meaning in it – he was a little Buddha, a spiritual being. After I began my education in autism I came to understand that this behavior was more likely an indication that Liam was hallucinating. It is theorized that some children with autism have an inability to properly digest the proteins in wheat (gluten) and dairy (casein). The proteins are only broken down partially and become similar in chemical structure to morphine. I also learned how chronic infections such as ear infections are common in these same children with autism and that, due to these infections and subsequent overuse of antibiotics, these children develop yeast infections and an overgrowth of bad (not beneficial) bacteria. The antibiotics not only kill off the offending bacteria responsible for the infection, but also the beneficial good bacteria and this results in an imbalance of the gut flora so essential for healthy digestion and overall gut health. The improperly digested proteins in combination with the bacteria and yeast overgrowth can damage the intestinal lining making it porous. A healthy intestinal track only allows certain essential nutrients to enter the blood stream, keeping everything else in the intestines. When the intestines become damaged, things that should not enter the blood stream can leak out. This is known as “leaky gut syndrome.” In the case of improperly digested gluten and casein, as it is similar in structure to morphine which can permeate the blood brain barrier, so too do these proteins, which is why Liam would hallucinate after eating. Reading about this was a shock. This behavior that I found to be cute, spiritual like, was actually a serious problem and something that could be hurting Liam’s brain. It certainly was not helping Liam to connect with the real world or pay attention to things that are relevant. No wonder he could stare at the lines created by repetitively opening and closing doors and drawers with such focus and glee for hours, he was tripping. With Liam’s failure to thrive, extremely limited (almost non-existent) diet, and failing health, we had no qualms about trying the Gluten Free Casein Free (GFCF) diet. I couldn’t implement it fast enough. Within three days of no dairy products, Liam was suddenly free of his respiratory illness. No more coughing, runny nose, elevated temperatures, or ear infections (ear infections did return at age 4 – more on that later). It was amazing. Gluten takes longer (about 3 months) to get out of your system. With the removal of gluten we did see an end to the baby Buddha behavior and he seemed more “with-it.” He has remained GFCF ever since.

We began seeing a naturopathic physician who was well known in the community for utilizing the DAN! Protocol with autistic children. She helped us navigate further treatments for Liam such as vitamin and mineral and fatty acid supplementation, all aimed at restoring the imbalances in his body and helping to repair his damaged gut. We found a super supportive nutritionist who formulated a GFCF formula replacement for Liam that was a combination of fortified rice milk, gluten free rice protein powder, brown rice syrup, and flax oil. We would mix up a big batch of this for Liam every day and to our amazement he would gulp it down. Unbelievable. Liam still wasn’t eating solid food well so we mixed up a big bowl of rice cereal with pureed meat, vegetables, and fruit and threw in all of his supplements (vitamins, minerals, cod liver oil, etc.), gave it a whirl, and fed it to him with a spoon. We called it glop. Liam loved glop. It makes me chuckle to think back to those days and how Gary and I would ask one another “Did you give Liam his glop yet?” We didn’t want to overdose him on supplements by accidentally giving it to him twice. Liam did enjoy gluten free waffles. Gary invented the “waffle pizza” which was ground meats and veggies mixed with dairy free butter substitute and spread on a waffle. If we cut the waffle pizza up in pieces and presented it to Liam “spread” side down, he would eat it without objection. It always seemed strange to me how Liam would eat these things happily but Popsicles, juice, Cheerios, pasta, bananas, candy were responded to as if they were poison. We got really creative over time it became sort of an obsession for me and I spent many hours in the kitchen whipping up various ways to sneak calories into Liam. We were happy to finally have some support and to finally get some nutrition into him. He made it back onto the weight chart, only to the tenth percentile, but he was on it and that was confirmation that we were on the right track.

Solving Liam’s gastrointestinal issues proved to be much more difficult. No matter what we did, Liam would still have explosive diarrhea, often multiple times per day. Changing his diaper was always a major chore and, in retrospect, we should have bought stock in baby wipes because we sure went through them like wildfire. We requested that Liam’s pediatrician test his antibodies to gluten to rule out the possibility of Celiac Disease which can produce the symptoms that Liam was experiencing. I didn’t really feel that Liam had Celiac because the treatment was removing gluten from the diet, which we had already done, and Liam still had major diarrhea. The test results were interesting, but not likely suggestive of Celiac. I won’t get too technical by explaining the difference between IGG and IGA antibodies, but this test showed that Liam’s body was producing sky high IGG antibodies to gluten, which is not normal. His IGA antibodies were low (normal). In Celiac, it is usually the IGA antibodies that are elevated. Nonetheless, we were referred to a gastroenterologist for further evaluation. We were not able to get an appointment with this specialist for six months, so we had to wait. Finally, the big day arrived. We were so hoping to get some help for Liam, some kind of treatment for his diarrhea and poor growth.

This appointment was a major disaster and the beginning of a deepening understanding of the stigma that surrounds children with autism and their parents within the medical community, especially when it comes to the concept that “leaky gut syndrome” and the speculation swirling around childhood immunizations, in particular MMR, may be implicated in this condition. Being unaware of how we might be viewed, I openly shared with her our observations, theories and interventions thus far. In response to our story, her demeanor suggested that she was judging us to be parents who were being “taken” by vulturous charlatans who preyed upon desperate parents seeking help for their un-helpable children by offering unsubstantiated theories and treatment. She didn’t really seem curious about Liam or our experiences. In addition to consistently calling him by the wrong name, referring to him as a “she”, and talking about another patient with one of the nurses in front of us (major HIPPA violation) she had already made up her mind that there was no reason to do any testing and that we should put Liam back on gluten. She did say that if we wanted to test him for Celiac we would need to put him back on gluten for three months and then do a colonoscopy to test for Celiac. She couldn’t really say if she felt there was a chance he did have Celiac (which would be important to know). I did know that I wasn’t about to put Liam back on gluten because he was doing so much better off of it – he was actually eating, had gained some weight, was no longer hallucinating at mealtime. Part of me was a little mad that we weren’t seen in a timelier manner because at the time we were referred to this specialist we had just taken Liam off of gluten. We could have done the test for Celiac at that point rather than risking feeding him gluten again. I didn’t trust this doctors interest in Liam anyway, and I certainly wasn’t going to go back to a gluten containing diet under her suggestion. I may have been more persuaded if I felt that she was interested in Liam’s case and truly wanting to partner with us to help our son. She also bluntly stated “Well, if his height to weight ration gets any worse we’ll have to tube feed him.” “Tube feed him! Why?” I didn’t understand her willingness to stick a tube down his nose but resistance to actually investigating the source of his diarrhea. No way was I going to jump to tube feeding as an intervention, not until all of my efforts to understand what was wrong and remedy the underlying problem had failed. Her final “recommendation” was to enter Liam into her research study for failure to thrive. This study was looking at the hunger center in the brain and how it may or may not be implicated in failure to thrive. She admitted that there would be little or no benefit to Liam himself by being part of this study, but that his contribution may add to medicine’s understanding of failure to thrive. Being part of this study meant hospitalizing Liam 3 times throughout the year for several days. No thank you. I felt that Liam was hungry and that his poor growth and diarrhea was much better explained by the autism literature than something to do with hunger. I certainly wasn’t going to put Liam through any evaluations and separations from home for this woman and her interests. We left, never to return and I’ve never regretted our decision.

To be continued

Diggers And Toast

2009-08-18T21:53:00.001-07:00

I wake up at about 5:15 every morning on workdays. I like to capture at least a little morning time to myself, so the trick is to get up before Liam wakes up. It usually doesn’t happen. Liam can be in a deep sleep but he seems to have this extra sense. No matter how quietly I get up and no matter how seemingly dead to the world he is, he springs right up with one thing and one thing only on his mind:

Diggers.

I made the mistake once of showing him some You Tube videos of construction equipment and now it has become an obsession. He can sit and watch diggers, bulldozers, cranes, dump trucks, etc. for as long as we let him. And if we don’t let him, it sounds something like this: “Diggers? Diggers? Diggers? Diggers? I want diggers. Diggers? Diggers? Diggers? Hot dog? I want diggers. Diggers? Diggers? Diggers? Diggers? Diggers? Diggers?”
“Oh, you want diggers.”
“Yeah.”

So when Liam throws this digger mantra at his pre-coffee dad, what starts as an extreme annoyance quickly becomes an opportunity to grab a little “me” time as I pull out the laptop and get him set up with the You Tube diggers. Once he is in front of his diggers with an eager grin on his face I can grab at least one cup of coffee before my day starts.

The other thing that is important for Liam in the morning is that he eats fairly soon after he wakes up. If we wait too long to feed him, even if he doesn’t act hungry, he can get extremely agitated. If he is wanting his diggers he will not eat, but if he is watching his diggers he will gladly eat while he’s watching. I usually make him some gluten free toast (his system can’t tolerate wheat or dairy) with peanut butter and jelly on it. This is how we start the day; Liam watching his diggers eating peanut butter and jelly toast and me slowly waking up with my coffee to the sound of working diggers on You Tube, delighted giggles, and incoherent comments about diggers digging.

As much as this makes for an easier morning, there are a few drawbacks. Liam can’t keep his hands off the computer while he is watching and he just starts pushing buttons that mess up the computer in ways I don’t understand, so I sometimes have to spend some time trying to undo whatever it is he just did while he is screaming “DIGGERS?!” repeatedly in my ear. It is hard to disengage him from the digger videos but usually with a little advanced warning such as “One more and then all done.” We can get on with our day. There is always peanut butter and jelly on my keyboard.

After coffee I can usually grab a quick shower and get ready to walk Chester while Liam is still watching diggers and eating. The next big task is getting Angie up so I can get the dog out the door. She is not a good getter upper. This I don’t understand. I always tell her “It’s like taking off a band aid. Do it quick and painless and once you’re up it’s great.” She clearly does not see the wisdom in my method as she makes the process as slow and painful as possible.

So walking Chester is another way of grabbing a little more of the morning for myself. In the winter it is still dark when I’m out and it is a really weird but strangely satisfying feeling to be out and about at this time.

I get about 30 minutes of dog walking and then I come back to my favorite scene: The computer is off, Angie is on the couch trying to drink coffee with Liam, jelly faced, snuggled up against her giggling softly, putting her hands on his face, and loving every minute of this precious snuggle time with his mommy. It is clear that mommy time far outweighs any draw the diggers may have had just minutes ago. Although Liam will follow me around the house all day wanting to do whatever I’m doing, I do not have the kind of snuggle appeal that Angie has. She can sit still with him and he can sit still with her and they can enjoy each other that way. If it’s Liam and me he always wants to be doing something active with me (if the diggers aren’t on), not sitting still. I don’t mind this for the most part. I like that he sees us differently. It is just more evidence that he is distinctively engaged with the world and understands the different nature of different relationships, whether the relationship is with Mommy, Daddy, Claire, Chester, or diggers.

Sunday

2009-07-14T22:08:00.000-07:00

I wanted to write about a recent Sunday we had as a family because it was pretty emblematic of a typical weekend day with Liam.

Sunday is my one sleep in day per week. I get to sleep until 8:00. Angie and I trade off weekend days and Sunday is my day. Yay! On this Sunday I got up as usual at 8:00. Claire was down in the basement/TV room watching TV and squeezing every last ounce out of morning TV viewing since Saturday and Sunday are usually the only days she is allowed to watch TV. Liam was in the living room with Angie snuggling on the couch and playing tickle games.

Although I am pretty much a morning person, I am still pretty useless until I have some coffee. I like to just sit and drink one cup without being hassled or even talked to, but I usually have to settle for either Liam or Chester all up in my morning space while I try to get caffeine rolling through my bloodstream. This morning it was Chester sticking his nose in my lap and begging to be petted…then Liam who decided he wanted to stop playing with Mommy and come over to me with a sense of urgency and say repeatedly, “Wanna go to the farm? Go to the farm?” I tried to ignore him but then he would just grab my face in both of his hands, aim his big brown eyes into my blurry brown eyes, and repeat it louder, “Go to the farm? Wanna got to the farm?” And then carefully rephrase, “I wanna go to the farm.” And smile intently waiting for my response.
“Okay, maybe we can do that.” I said. “But first I need to wake up, and drink some coffee.”
“Go to the farm?”
“After…”
“Coffee.”
“That’s right. After coffee. Now why isn’t there any music on? You want to listen to music?”
“Yeah.”
“What do you want to hear?”
“Abba.”
“What?”
“Abba.”
I was a little blown away. We hadn’t (or I should say Angie hadn’t) listened to Abba in many months. I couldn’t believe he pulled that out of his memory. So I put it on.

When Liam is in a decent mood and there is good music on with a beat, he likes to dance, and he’s pretty good at it. He has many odd dance moves but we realized after watching him so many times that he has perfect rhythm. He really doesn’t miss a beat even though he will stop and start and stop and start and twist and move his body in many odd directions. Abba proved to be good dancing music for Liam.

The caffeine was starting to kick in and I was beginning to perk up a little. Angie decided that if we were going to the farm she’d better take a shower. What? It really doesn’t matter what we do. Angie has to take a shower before leaving the house. If we were going pig wrestling she would have to shower first. I, on the other hand, will go the whole weekend without showering if I can get away with it. In fact I think “pants optional” is a great policy for any day. I think Liam would agree since he is always taking his pants off.

Well, I knew that if she was showering that we had a couple hours to kill, and if Liam got bored and/or anxious to go, it could be a rough morning. The Abba cd was almost done and I knew I was going to have to step it up a notch music wise for Liam. In a flash of brilliance it came to me…AC/DC. I thought, “What a great way to get Liam all pumped up for his day?” I blew the dust off of my old AC/DC box set and cranked it up. Liam immediately got a big grin on his face and actually started head banging like he was a heavy metal pro. No one taught him this. His moves were instinctual and in sync with the driving base and three chord progressions. We danced and head banged together until Angie got out of the shower. “Are you ready yet?” I said knowing we still had about an hour to fill.

I got Liam dressed and I ate breakfast and began the process of prying Claire away from the TV and urged Liam to eat more food to help keep him regulated and keep his mood stable. Then I got Claire fed and dressed and got both kids’ teeth brushed and hair combed and faces cleaned. I got myself dressed and ready. I packed extra food for Liam. I got all the dog stuff together. The timing was good on this day because just when we were ready to go, Angie was ready. We were out the door and we loaded the kids and the dog in the Jeep and headed for the farm.

The farm is on Sauvie Island, which is a completely rural island just north of Portland where the Willamette and Columbia rivers meet. The island is a wildlife preserve and agricultural haven with many farms of different kinds, walking trails, and lakes. It is beautiful and we go there as often as we can. It was Angie’s and my special place before we had kids and now it was our family’s special place. To us going to the farm means taking the dog with us and going for a walk first on a wetland trail on the island where the dog and the kids can run free and then we go to the farm afterward. Whenever we’re on that trail, I feel like all is right with the world.

We got to the trail and began the walk like usual. Claire would keep stopping to look at a bug or an interesting leaf, and Liam would want to press on with all of us together, getting anxious at anyone lagging behind. Chester would run ahead out of sight and eventually come running back. Angie and I would talk about how to try and make our lives easier while being reminded that coming to this place can really help set our minds at ease.

We walked for bout 30 minutes before Liam started saying, “Go home? Go to the park? Go to the farm?” This is somewhat typical for Liam as an indicator that he is beginning to ramp up into an agitated state. It is as if he suddenly gets bored with what he is doing and doesn’t really know what he wants to do. For whatever reason he just suddenly can’t enjoy the moment he was so thoroughly enjoying a minute ago. This is also a clue that he will need some food in him really soon or it will just escalate. Our plan was to go to the farm and buy lunch there. They had hot dogs and barbeque and produce. We also brought some snacks for Liam but they were back at the car. We started to walk back to the car and sure enough Liam started to get more and more agitated. He started letting out loud sharp shrieks, and growls. It’s hard to describe but he becomes really primal at times. He growls and roars and screams and hits and throws things. He was doing all of this on the way back to the Jeep. By the time we got there he was out of control and was throwing gravel from the parking lot. We would have put him in his car seat but we knew he would hit Claire who sits right beside him. We got Claire and Chester in the Jeep and Angie sat in the gravel in front of the car holding Liam and trying to feed him a banana while trying to sooth him. This took about ten minutes and Liam ate the banana and calmed down enough to go into his car seat. He was clearly still agitated and kept hitting the back of Angie’s seat all the way to the farm. We thought about just going home but decided that he wasn’t going to dictate our day and it wasn’t fair to Claire who loves the farm. Liam loves the farm too when he’s not out of his head.

We got to the farm and decided to get lunch first to get some food into Liam (we were hungry too). We found an open picnic table on the edge of the eating area. I sat with Liam while Angie and Claire went to order some hot dogs. Liam was really starting to escalate again. I had part of a peanut butter and jelly sandwich on gluten free bread I was trying to feed him. He ate little bites between trying to smack it out of my hand or throw berries at people or swiping things off of the table. I was very apologetic but people seemed to be understanding. I think farm people are cooler than store people. Liam escalated to the point where I had to sit him in my lap facing away from me and wrap my arms around him to keep him from hitting and throwing. He was a little like a wild animal at this point. He was growling and shrieking and trying to kick or hit me. I kept feeding him bites of the peanut butter and jelly sandwich knowing that it would help him when it got into his system. People were doing their best to ignore the scene.

It was taking a long time to get the food and I was feeling like just sitting there restraining Liam was not helping. Then I saw someone with a little red wagon and I remembered that they had a bunch of these wagons at the farm and that Liam always liked riding in them. I said to Liam “Wanna go in a wagon buddy?”
Liam stopped squirming and struggling for a second.
I said it again, “Want to go in a wagon?”
“Wagon.”
“Yeah?”
“Yeah.”
I think the sandwich was starting to help at this point and he was a little calmer with the prospect of a wagon ride to focus on.
“Let’s go find a wagon.” We got up and went to the front of the farm store where the wagons always were. THERE WERE NO WAGONS THERE! “Where are they?” I said calmly knowing that Liam could explode at any minute. I looked around and saw only the one wagon with a kid in it being pulled by his mother. There were usually about fifteen wagons at this farm. I didn’t see any more. I thought about offering the mother a hundred dollars for the wagon, but then realized what a ridiculous idea that was because I didn’t have a hundred dollars.
“Wagon?” Said Liam. He had a telltale quiver in his voice indicating that I needed to think of something fast.
“Hey Liam, you wanna go see the chickens?” I knew he always like to check out the chickens.
“Chickens.” Said Liam. He was still not happy and barely holding it together but hopefully I could distract him long enough for Angie to come with the food.

We went behind the big barn toward where the chickens were when Liam said, “Wagon.”
“There are no wagons buddy.” I said. Then I realized he was pointing to a big pile of wagons stacked up in back of the barn. They were all in various states of disrepair, but he saw them and I knew this wasn’t going to go well if he didn’t get a wagon ride now. I made sure no one was watching, went over to the wagon pile and pulled one off the top. It looked okay so I brought it over to Liam. He got a big grin on his face and said, “Wagon!” jumping up and down a couple times.
“Get in buddy.” I said with a sense of relief that he was finally turning a corner mood wise. Liam got in and I began to pull him around. There was dramatic and rhythmic “clunk…clunk…clunk.” I turned around and noticed that one of the back wheels was half gone. But it didn’t seem to bother Liam; in fact, every time it went “clunk” it made him giggle. If he was happy, I was happy. I pulled him around the farm while Angie and Claire waited for the food: People looking over to see what that clunking noise was, Liam giggling, and me pretending like there was nothing wrong with the wagon. We finally got the hotdogs and ate them at the picnic table. Everybody was full and happy again.

We decided to go home and drop off Chester because we had to go to Ikea to get a rug for the living room and a new slipcover for our cheap Ikea couch. Angie’s sister and her family were coming the next day from New Hampshire and our current slipcover was trashed. That was not only our second slipcover, but also our second WHITE slipcover. You would think we would have learned our lesson with white the first time around with two kids (one being Liam who is always covered in something) and a dog, but Angie insisted that white was the way to go because you can take it off and bleach it. My logic was, "why would you want to take the slipcover off every week?" It was not easy, and I calculated that if I charged myself labor at, say, fifty five bucks an hour (I don’t come cheap), that’s an hour minimum per week, project that over a year and we are $2860 into this $350 couch. That’s just not good economics. So I was willing to get another slipcover as long as it wasn’t white.

I believe that the Ikea store was designed by an evil genius. First of all there is only one escalator; fine with Liam, but it only goes up and you can only ride it once as you enter the store; not fine with Liam. Then when you get up to the top you are immediately deposited into a rat maze of really cheap stuff that you must have. You cannot escape until you are able to master the maze and empty your wallet of all but enough to buy your whining kids a bag of Swedish fish candy on the way out. Pure genius!

The strategy was to try to get Liam through the store to the elevator on the other side. Once I found the elevator I bought some time riding it up and down with Liam while Angie and Claire meandered through the store at a leisurely pace. Liam and I spent most of our time on the elevator. We would go down (there were only two floors), and the door would open. At one point a polite older lady gestured to us and said, “Go ahead.”
“Oh no. We’re staying on.” I said.
“Up?” Liam said grinning.
Then the lady looked at us puzzled.
“…We’re going all the way.” I said. “…See where this baby takes us.”
“Up.” Said Liam still grinning.
The lady gave me a confused nod and a smile as she exited.

We found a good cheap rug that would really tie the room together and headed to the warehouse section, which was where they keep the furniture and slip covers. We looked through the slipcovers and they had a new color of which we were previously unaware, DIRT BROWN! That’s the color Liam was most of the time! Finally a slipcover that made sense. The only way it could have been any better is if they had peanut butter and jelly color. Angie pointed out that brown was more expensive than white.
“Yes but think of the money we save on labor.” I said.
“What?”
“Never mind. This one makes sense. Let’s get it.”

So we went home with the new rug and new brown slipcover. I got the rug out of the back of the Jeep and Liam had to help me carry it in so he grabbed an end believing he was bearing some of the weight. As we were carrying it in the house Liam said, “It’s a koont.”
“A what?” I said.
“It’s a koont.”
“Okay.”
Then we went back for the slipcover. Liam had to help me carry that too and once again he said, “It’s a koont.”
“This is a koont too? I said.
“Yeah.”
I don’t know where Liam found that word but I guessed that a koont is anything that comes from Ikea.

We spent the rest of the day getting the house cleaned and ready for Angie’s sister’s visit. We vacuumed and mopped; two activities that really capture Liam’s fascination. Just like escalators and lawn mowing, he can’t get enough of those tasks. We put down the rug and put the new brown slipcover on the couch. I rubbed Liam against it…nothing. It worked perfectly. We gave the kids a bath, read them a story and put them to bed.

Angie and I kicked back on the new koont with a beer. Overall it was a pretty good day.

New Developments

2009-07-11T20:48:00.000-07:00

I thought I’d take a break from the thread of my last few posts and zoom forward to present as we’ve been having some difficult times this past month which may be moving us forward to understanding Liam’s medical issues and HOPEFULLY bringing us closer to some help! I started retelling Liam’s story to lay the foundation for what we are going through now and for what is possibly on the horizon for Liam. I’ve kind of gotten lost in revisiting his past. It’s amazing how when you’ve been through some trauma and trying times, looking back is almost like being there again. I thought I had forgotten much of it. It is clearly still with me and something that I want to document for myself, for Liam and Claire, and for others in that it may be helpful to someone else walking this journey.

Liam has always been somewhat of a moody child. He can go through periods of incredible frustration, agitation, and all out rages, followed by periods of calm and absolute joy. In the bad times it’s really bad and hard to remember that he isn’t always like this. In the good times, it’s hard to image it was ever so bad. We’re in one of the bad times right now, maybe even one of the worst of all bad times.

Liam had been doing so great for so long. Not to say that he doesn’t sometimes throw a whopping tantrum or get obsessive about something and drive you absolutely bonkers. Overall, however, he had been much calmer, able to handle things that historically frustrated him and he’s been far less volatile. Then, kind of out of no where, a raging, angry child emerged and it is as if we have been catapulted back a few years when he was totally out of control much of the time; Hitting all of the time, throwing things around the house, screaming and crying, flopping on the ground and refusing to get up (even if we were in the middle of a parking lot). He is also off his rocker, totally silly with ADHD symptoms through the roof. So he’s either pissed off and raging or giggling, laughing, and being a total spaz.

At some point (which I will detail more in a future post) we discovered that his needing to eat brought on a lot of the rages. We were under the impression that he had hypoglycemia and, given his poor executive function, the feelings of agitation and anger that are normally experienced in times of low blood sugar were magnified in him. We were encouraged by his then pediatrician to feed him frequently to combat this problem, and this seemed to help. I also think that moving to a Son-Rise program brought on relief as well as Liam cannot tolerate a lot of adult directed teaching. Ever since then, we have been living are lives around keeping this child fed. At present, I keep a food log daily and everyone that works with him keeps track of what is offered to him and what percentage of all food he consumes. This has been so helpful in making sense of his behavior and helpful in informing the team as to when they really need to encourage food to avoid a total meltdown. It is especially useful for Gary and I in that we can look back and see what he ate, when he last ate, to try and keep him in check in the evening.

We don’t know what is truly contributing to this change in Liam, but we have some ideas worth investigating. Definitely something has got to change. Just prior to the onset of Liam’s changed behavior he had a prolonged illness with a bad runny nose, cough, and low-grade temperatures. He also became ketotic (meaning that he was burning fat or muscle for energy instead of sugar) despite eating sufficient calories. This is something that periodically happens to him. Another anomaly? Another clue? It depends on whom you ask. Once he recovered from the ketosis, the raging set in big time (may be unrelated – who knows). Then one morning a few weeks ago, out of the blue, Liam had a 15 second grand mal seizure in the morning. That was pretty scary and upsetting. He’s had one other seizure that was much longer and much scarier at the age of 4 (more to come on that also in a future post). He’s been tested and tested and has always had normal EEG’s; No explanation for his 2 seizures - another one of Liam’s strange and un-diagnosable issues. It’s hard for me to imagine that his having a seizure doesn’t have anything to do with his current behavior but, again, we are left without answers.

I recently emailed a friend of mine who also has an 8-year old boy with autism inquiring about something she posted on a Yahoo group that was helpful to her son for similar issues. She is also a Son-Rise mom and gave me such great inspiration to not look at this as a negative, but rather something that can bring us closer to solving Liam’s issues. She recently had her son’s adrenal functioning tested and it turns out he was in fight or flight overdrive. Supplementing hydrocortisol has brought about night and day change for them – awesome! I know nothing about this but turned to my trusted Google academy for information. I was also intrigued about this because both of our son’s have been diagnosed with hypothyroid. We recently learned of this in Liam and we also recently learned that he has high cholesterol, which is crazy as he is 47 pounds at 8 years of age and eats the healthiest diet of any child I know. In my Google research I have found some very interesting things about thyroid and adrenal function, cholesterol, glucose and fat metabolism, and behavioral and developmental symptoms that we experience in Liam including rages. Woo-hoo! I never thought I’d cheer about my child having these serious issues, but it truly feels like maybe we can arrive at some understanding – which brings intervention – that may help Liam with his mood. There is much more to the story and to possible underlying conditions that may be revealed to us over the next few months as we go through a metabolic work up that has been recommended by a doctor from the OHSU metabolic clinic. For now, I remain hopeful that difficult times bring new information and more symptoms can bring greater interest on the part of the medical community to solve these issues!

I try to remember during these tough times that Liam is doing the best that he can and I really do feel for him. It just can’t feel good to be so angry and out of control. He’s ordinarily mostly a sweet and fun child. I need to hang on to the image of the “good” Liam, which is really tough when he’s smacking and head butting you and throwing car seats and shoes around the house, screaming, crying, and growling. The hardest thing for me though is feeling that Liam’s mood is so limiting for him. He is capable of participating in so many of life’s experiences and can get so much out of being engaged with other kids and in his community. His need to maintain a strict eating schedule and the tornado that ensues if he doesn’t prevents him from being able to really take part in so many things. He has really been benefiting from being around children more as he seems to learn so much from them and is so motivated to challenge himself when in a social environment. We’ve wanted to find more social experiences for him where he can be part of a group and play with a consistent group of children. He was recently invited to participate in Claire’s summer camp program two half-days per week, which is such a great opportunity for him to be around kids and play. Things had been going pretty well and he’d been enjoying himself. This week, however, he didn’t want to eat before going to camp and ended up having a total melt down when required to wait in line for a lengthy period of time (for him) prior to going to the park. He ended up hitting Claire and then hitting another child. He was taken outside to calm down but instead continued raging and ended up running into the street in front of a car! That was not a fun phone call to get.

We have two important medical appointments for him next week that we are anxiously awaiting and hoping like heck that something can be done to restore Liam at least to his former functioning. We’ll keep you posted.

Liam From His Grandpa's Perspective

2009-07-05T08:25:00.000-07:00

When Gary and Angie told Susan and me they were pregnant we were thrilled for them. They were excited at the prospect of having their first child and for the adventure of creating their own family.

When Liam was born he had some characteristics that were different but because he was a new infant we weren’t too concerned. As time went by Gary and Angie kept us informed about what the doctors were saying regarding the ridge on Liam’s forehead and other atypical behaviors and diet concerns. We live in Grants Pass and Gary and Angie live in Portland so we didn’t see Liam very often. When Liam was finally diagnosed as having autism Susan and I were upset and very concerned about the prospects for Liam and the family. We knew Liam had problems we just didn’t know what…so now we knew.

We had just a smattering of information about autism. Through Angie we learned how uninformed the medical community is about autism or how poor the communication is between the various medical disciplines that work with autism. Autism is a huge problem in the U.S. There is no definitive plan to address autism or the societal problems associated with the disease. It appears most of the cause and cure research results in conjecture conclusions. What is especially disturbing to Susan and me is that schools and the medical community are not communicating and sharing ideas. Indeed schools and the medical community aren’t sharing information between themselves. In fact, in some cases Gary and Angie were told, in essence, Liam has autism…get over it.

Susan and I watched a few TV programs on autism. Gary and Angie told us what they were doing for Liam. They told us what the schools and doctors were saying. They informed us of the options available to them. We became more educated about autism but we were still novices.

Angie felt frustrated because she knew in her heart there was more out there for Liam. She was and is determined to educate herself as much as she can. Angie took Liam to a highly regarded physician on the east coast for tests and diagnosis plus she read everything she could get her hands on. Consequently, Angie, in my opinion, is one of the most well informed people in the U.S. on autism. She didn’t accept the “Liam has autism…get over it” concept. She informed Gary of her opinions and findings. Together they set a course for Liam. They hired therapists to work with Liam at home five days a week. They built a special playroom/classroom in their basement for Liam and Claire. Both of them worked with Liam every day as parents and therapists. They take Liam to the store, restaurants, parks, bicycling, to their friends’ homes and other places to keep him exposed to the real world. Their efforts resulted in huge improvement in many areas. Liam can read simple sentences, he can now speak clearly in short sentences, and he listens to some extent when people talk to him. He used to melt down just getting a hair cut or to sudden loud noises; not anymore.

At times Liam likes to crawl up in Susan’s or my lap and snuggle. Other times he doesn’t acknowledge we’re in the room. Liam still has melt downs when he doesn’t get his way (typical of many kids that age) and his attention span is very limited (typical of many kids that age).

When Liam was about two Gary and Angie announced they had a surprise visit from the stork. Of course they were worried as was the family. All the thoughts of having another child with autism plus the additional financial burden and divided attention away from Liam could pose even more problems. As it turned out Claire was born a beautiful typical child. She is a blessing to Gary, Angie and Liam. Claire loves Liam, follows him around, plays with him and “turns him in” when he gets in trouble. Claire is probably our last grandchild.

About a year ago Gary and Angie bought a dog for Liam and Claire. Chester is a saint. He lets the kids pull his tail, pull his hair, pull his ears, push him, and other such kids stuff. From Chester’s standpoint he must think the kids are fun but annoying.

The Paquin and Coffee families have contributed to Liam’s needs in all sorts of ways. I think Gary and Angie know both families stand ready to help where they can.

Susan’s and my knowledge about autism is still limited mostly to what Gary and Angie tell us. We want to know more, especially about what progress the medical community and schools are making in their respective professions and how they are sharing information. Our biggest concern is Liam’s future. What is going to be available to keep his progress moving? What will Gary and Angie have for options as Liam becomes an adult? Susan is a worrier…she worries about everything especially if it pertains to our family. I’m more pragmatic. I am really concerned but I don’t tend to worry about things I can do nothing about.

I applaud Angie for her research, her stubbornness with the “experts”, her decisiveness, her determination to get Liam all he needs and her ability to juggle a job and still be a great mom, wife, and teacher. I admire Gary for his skills as a dad, his incredible patience with Liam, and his ability to be the breadwinner, husband, and family rock.

As a grandfather, I firmly believe God wanted Liam born for a reason. He placed Liam in the absolutely best family possible. Liam is a beautiful child and fabulous grandchild. Liam’s destiny is wrapped around a purpose only God knows. But, I’ll tell you what, whatever his destiny, Liam has the spirit and personality to be great at whatever he does.
Liam’s very existence is meant to influence, educate, humble, and show to all people he meets that he has a higher calling. Liam is not handicapped, disabled, or autistic. He has autism but more importantly he is a special province in this world that is not available to the “normal child”

With his parents’ amazing role in his life and the support of the Paquins and Coffees it’s going to be an interesting journey. I couldn’t be more proud of my son and my daughter-in-law.

Phil Paquin, Liam’s Grandpapa

The Nature of Things

2009-06-30T06:51:00.001-07:00

Liam is completely unencumbered by thoughts of what other people might think about him. This fact offers him a special kind of freedom that most of us don’t get to enjoy. He acts how he wants when he wants, and there is no social norm that is going to get in his way. If he wants to start dancing in the middle of a restaurant because he likes the music, he will do it until we make him sit down. He will stand up on his chair, he will shriek loudly if he is mad or swipe a basket of french fries off the table, he will crawl under the table, he will let out a giant whoop when he’s excited and he will hit a complete stranger if they happen to be in the way when he is mad. He will stop these behaviors, not because he is making a spectacle of himself and he is suddenly feeling self conscious, but because we tell him to.

So, due to the fact that social norms are not on Liam’s radar, it makes for an interesting study in the old nature vs. nurture debate. The things Liam is into are not a product of his environment. The only thing that influences his likes and dislikes is his own perception of them.

Liam is a boy who loves trucks, tools, pink, construction equipment, trains, fire trucks, girl clothes, playing in water, pumpkins, fires, Popsicles, cooking, baking, riding his bike, the beach, dirt, sand, wearing his sister’s pink light up shoes, escalators, and elevators.

These are mostly boy things and Liam seems to be naturally drawn toward the masculine. But he is equally unapologetic about his affinity for feminine things. Liam takes a circus arts class and one day he chose to wear Claire’s pink satin shorts and her pink Ugg boots to the class. Laura, his therapist let him (and, I suspect, encouraged him to) wear these items because he just really wanted to. I picked him up from this class and when I got there is when I saw what he had on. Laura and I joked around about it, but most important of all, Liam was just so proud of what he was wearing. In his mind he wasn’t making a statement or bucking a trend. He just saw something he felt was novel and interesting to him and he felt special wearing it without any perception that pink is a girl color. Liam and I walked hand in hand from the studio down a busy Portland street to the car. At first I didn’t even realize that he was turning peoples’ heads but when I saw that people were staring at him, I surprised myself by not being self-conscious. In fact it was at that moment that I realized that Liam was helping me not care what anybody else thinks, just like he doesn’t care. I was proud of him (and a little proud of me).

Liam loves other kids and is always interested in what they are doing. He is not socially adept, partly because his lacking language skills hold him back and partly because he is just really unaware of the subtleties of human interaction. At a playground if Liam sees a group of kids playing basketball and he gets interested in it, he will just run into the middle of the game as if to say “Here I am. Can I play?” Even though he doesn’t have the slightest idea of how to play basketball. Interestingly, the other kids are usually too puzzled by this to be hostile toward him.

We all went to a potluck at Claire’s school for her last day of kindergarten. There were kindergarteners all around who were all more socially advanced than Liam. He was having a good time on the playground with the other kids, climbing trees and playing in the dirt. Then he noticed a group of older kids, first grade boys in another area of the playground. He grabbed my hand and started pulling me toward them saying “Friends? Friends?” I suddenly became aware that he was aware that this was more of a peer group for him. He is the one who decided this. No one had ever taught him to play with kids his own age and gender. I said “You can go over there if you want.” He walked over to the group of boys and started talking. I stood back and watched. When Liam talks, most people can’t really understand him. He says words and sentences but it doesn’t come out as normal speech. The boys looked at him puzzled at first and tried to ask him some questions but it was quickly clear to them that Liam was a little different and had some challenges, and they were cautiously curious about him. This was cut short as the boys were called to line up to go back in to class. To the boys’ amusement, Liam fell right in line with them. I went over to get him. “Time to say goodbye to your friends, buddy.” I said.
“Bye friends.” Said Liam.

So Liam’s lack of awareness of social norms got me to thinking, “Is this a deficit or a gift?” He clearly has limits in how he can interact with people, but these limits allow him to make his presence and desires known in ways that may be intimidating for most people. If I were to go to a party where I didn’t know anyone but had a strong desire to interact with the people there, I couldn’t just interject myself right into the middle of a conversation (at least not before several beers). I would try more subtle, learned, socially acceptable ways. Since Liam doesn’t have those filters, he can just insert himself into a situation without anticipating rejection. He just assumes that everyone wants to play with him. If he doesn’t get a desired response from someone, he will move on. He doesn’t take it personally and it doesn’t deter him from trying again another time. There are people who have embraced him and others who could not deal with him. For us it would be a gamble, but for Liam there is no ego attached to it.

This has also made me wonder about Liam’s future. We had a Sonrise program instructor come for a few days to do some training with us for Liam’s program. Her name was Suzanne and she was a very warm, open person. After the training I was driving her to the airport and we got o talking. I said, “You know, I really worry about Liam’s future.”
“In what way?” She said.
“Well, there is a chance that he may always have the challenges he has now, I hope not and I think not, but if he does, he is the perfect victim and we won’t always be there to protect him.”
“I would challenge you not to think that way. It’s dangerous.”
I thought, “What? Isn’t it more dangerous not to be realistic?” “What do you mean?” I said.
“All thoughts actually have energy. If you keep negative thoughts, that energy can make those negative thoughts come true. The same is true with positive thoughts. When you think of Liam you have to realize that he has already shown that he is perfectly capable of taking care of himself.”
“I’m not sure I follow.”
“Look at the people Liam has brought into his life. He has known what he needed from the day he was born, from before he was born, and he has you and Angie and Claire and all these wonderful people in his life here to help him. Do you think that was an accident? I believe that Liam will always bring the people into his life that he needs whether he is disabled or not. We all do when we are open to it. Liam couldn’t be more open to it.”

I still think of those words any time I am feeling anxiety about Liam’s future and it really helps set my mind at ease. It also makes me think about human nature in general and how ironic it is that it is human nature to progress, and invent, and innovate, and expand our societies to the point where we create artificial barriers to the very nature that compels us to create them. Liam’s disengagement from those barriers is the thing that makes him free to be a human in purest form. It’s not always easy for him or for us, but I have to envy him just a little.

Glut 1 deficiency-Could it be? Part 3

2009-06-25T20:37:00.001-07:00

During the first weeks after Liam’s 12-month vaccinations, he would just sit and stare for hours. I started to notice that he would not look at me. He would actually avoid eye contact. “How could this be? When did this start? Did I just not notice this before?” He had no stranger anxiety. He didn’t seem to notice when I dropped him off at day care. He didn’t notice when I returned. It’s like I didn’t exist. I was drowning in sorrow. I couldn’t reach my precious little boy. Now I was really worried that he had autism. I didn’t really know anything about autism, except from “Rain Man.” I also remembered this little boy I once worked with who had PDD, NOS. I didn’t know what that was at the time, but I knew it had something to do with autism. This child was odd. He didn’t have friends. He was dreamy and in his own world. He would rock and pull his hair. He talked funny. He was pale and thin and sickly. He could get aggressive. I had a soft spot in my heart for him. “Was this autism? Would this be Liam? Was this why I suspected autism in Liam? Was I just paranoid because there was so much media attention paid to autism?” I went to the special needs parenting section at Barnes and Noble with the idea of reading about autism. I was so worried someone would see me and think that I had a child with autism. I felt like I had a spotlight on me. I pulled a book from the shelves, opened it up, read one sentence. “That doesn’t sound anything like Liam. Whew, thank goodness. Liam doesn’t have autism.” I went back home but deep inside I knew that one sentence from one book was not very convincing. Over time, I worked up the courage to really start investigating. I even got brave enough to take a stack of books to the café and hunker down for a night of research. I turned all of the books over and stacked them on top of one another so no one could see the titles. I felt like I was betraying Liam to have the thoughts that I had. I didn’t want any attention from anyone about this topic. I didn’t want to talk about it. I couldn’t even bring myself to speak the word out loud. I remember one evening during my Barnes and Noble research a “nosey” mom noticed what I was reading and said so casually “do you have I child with autism? I do. He’s six.” How dare she. How could she just say that out loud in front of everyone! “No” I said. I’m sure I gave off a very strong vibe saying, “Leave me alone,” and she did.

I read books about dietary intervention and how children with autism had gastrointestinal problems, eczema, food allergies, food cravings, and on and on and on. I didn’t find anything about failure to thrive, trigonocephaly, or gross motor delays. Most of my reading indicated that children with autism develop motor skills on time, sometimes early. They were supposed to be colicky and not like physical contact. None of this seemed to describe Liam. He was snuggly and quiet. I’ve since learned that there is a type of child with autism who is described as the “too easy baby,” who is just not quite as connected and drifts off little by little, who does lag behind in motor skills. But the craniosynostosis and growth problems, that seemed unique to Liam. I read one book in particular called “The Special Needs Child” by Stanley Greenspan, a well know child psychiatrist that changed my life forever. This book described all sorts of things that indicate autism in very young children, things that may get overlooked until a child is older and really stands out from his peers. All of these things described Liam to a T. He didn’t indicate his wants with any form of communication. He didn’t point, didn’t gesture. He didn’t play reciprocal games like patty-cake or peek-a-boo. He didn’t wave bye-bye. He didn’t imitate or pantomime things he saw me doing. He never checked in with me. If we went to the pediatrician’s office he would crawl away from me to explore the little cube that every office has with all the wooden beads you can push around on wires. He loved that thing. He never looked back at me to see if I was there, if I was watching. I could have left and he wouldn’t have cared. All around me I started to notice other babies doing these things. There was a baby at day care standing at the mirror pretending to brush his hair. Another one was pretending to talk on the phone. They seemed so advanced. When I would enter the day care all the babies would come over to me and say “hi”. They would grin and look up at me like “aren’t I cute?” Where was Liam? Sitting in the middle of the room fixated on some random aspect of an object like the fold in a tumbling matt that was laid out on the floor. He didn’t notice that I had entered the room. I would watch a friend of mine who has a son six weeks older than Liam playing with her child. I remember this one day when they were playing a peek-a-boo game. He would grin and look at her and laugh over and over and over again. I thought to myself “That’s the problem! I don’t play with Liam. I just need to start doing that.” I went on a playing crusade, trying to engage Liam in these games. “Liam, where’s Mommy…where’s Mommy…” Nothing. No response. I blamed myself. “I don’t even know how to play with a child. I didn’t teach him these vital skills. I must have neglected him somehow.” But part of me knew that you’d have to lock a kid in the closet to deprive their development to the point that they would be content to sit and show no interest in their parent. I certainly had never locked Liam in a closet. I loved him more than anything. It was all so devastating. So confusing.

Liam started his early intervention services at about 13 months. He and I met weekly with a group of other babies and their moms or dads along with a group of specialists. I didn’t really see the purpose of this; Liam wasn’t getting much 1:1 attention. I would play with him and there was a little circle time where we would sing and play musical instruments. It didn’t seem like anything I wasn’t already doing at home really, other than the part about being with a group of people. Liam didn’t seem to care about the other kids; a group didn’t seem relevant for him. I didn’t know where this would go, or if there was more specific help coming. I was getting anxious that time was slipping away and Liam was feeling out of reach.

Reading “The Special Needs Child” was a devastating blow because I knew that my fears about Liam were correct. It was also inspiring because it was the first time I had ever heard that Autism could be treated, that some children could recover fully and lead normal lives. I’d never heard that before. I thought of autism as a death sentence, permanent, a lost child forever that would never know me, a child that I would never really know. Even though this book confirmed my suspicions about Liam, it also gave me a reason to speak up and start accessing help. Time was of the essence. Early and intensive treatment was key. I read all sorts of books about various treatments for autism and got started right away making a plan to get these services for him. I read about Applied Behavioral Analysis (ABA) and how this was the only “researched based” intervention for autism. I read a study from UCLA by someone named Lovaas who conducted a research study showing that nearly 50% of children who received 40 hours per week of ABA recovered and all children improved. “The Special Needs Child” talked about an intervention called “Floor Time” which it touted was essential for recovery too. It differed from ABA, which worked on specific skills through repetitive drills, in that it focused on the relationship with the child through child-centered play. I also read about dietary intervention, specifically a diet that eliminates gluten (found in wheat, barley, oats and rye) and dairy called the GFCF (gluten free, casein free) diet. I learned about DAN! Doctors and the DAN! Protocol. This was a group of doctors, some of whom have a child with autism, who specifically treat children with autism for their underlying medical conditions that are thought to be contributory to the development of this disorder. I never knew about any of these things. I was excited. Liam was only 13 months old. Most children don’t get identified until much later. We had that on our side and I wasn’t going to waste any more time. We would get all of this help for him and “save” him from autism. I called his early intervention case manger. I requested we meet to talk about Liam. She came to our house and I just flat out said, “Do you think Liam has autism?” She was surprised as, in her experience, it is usually the specialist who first raises this concern to the parent and the parent who typically needs a little convincing. I didn’t care, I wasn’t going to waste Liam’s time with services that seemed would never really help him. He needed help fast and now. “Yes, we have wondered about that” she replied. We agreed to do an autism evaluation to see if he was eligible for autism specific services. She was a great case manager and worked to make this evaluation happen fast. I really appreciated that.

Liam did qualify for autism services. I was happy. I knew in my heart that something was wrong and now we were going to get some real help. We met as a group to develop his service plan. The early intervention team for our area proposed 8 hours of 1:1 intervention in their autism program, two hours per day four days per week during the school year. “What! 8 hours per week! The research says 40 hours. Is there any research to support that 8 hours will accomplish anything?” In everything that I had read so far, intensive intervention was emphasized over and over. Children with autism do not learn by existing in this world, by observing others. They need specific intervention during almost all of their waking hours to help their brain make new, relevant connections. Liam seemed so internal, like he didn’t notice anything going on around him. I started to notice that the only things he really paid attention to were things that spun and lit up. He would stare at fans and put a flashlight right up to his eyeball. One time we were at a store and there was one of those flashing lighted signs. Liam was fixated on this. As we walked under it he almost flipped out of my arms to keep staring at it. He also repeatedly opened and closed doors. He seemed fascinated by the lines things like doors and drawers created and would cock his head and look at these lines with his peripheral vision and would laugh and giggle. This was his source of entertainment and enjoyment. He could do these things all day. He was wiring his brain for random, weird things that seemed to me to hold no purpose. He would need some serious 1:1 intervention to counteract all of this and to help him begin to take note of the “more important” things in life. Eight hours per week would not do, that was a drop in the bucket. I also counted all of the days that school was in session. This totaled less than 50% of the entire year. Unacceptable! Nonetheless, we were stuck with 8 hours. The early intervention program was not going to authorize more, this was standard and all they could do with their budgetary restrictions. They implied that I should be happy; it’s more than children with other types of disabilities receive (or so they said). I knew we could not afford to hire an attorney, which seemed the only route to possibly getting something closer to research based intervention, so I consented to this plan. We would just have to find the help elsewhere.

Our insurance company did not offer rehab services (PT, OT, Speech) for children with autism. Autism was an excluded condition! Rehab services were reserved for children who had “lost function due to medical illness or injury.” I guess they see these children as more helpable. The most infuriating thing to me at the time was, around this same time, there was a lot of media attention paid to a set a conjoined twins who were joined at the head. I think these children were from India, but were receiving medical treatment here in the United States. After surgery to separate them, the twins received something like 8 hours of rehab services a day from a team of people in the hospital. These children were maybe two years of age (you probably remember the story) and they could not walk or play, etc. They seemed more disabled than Liam. Now, I’m not saying that they didn’t deserve this treatment, but did they deserve it any more than a child with autism? I was realizing for the first time the level of discrimination that exists toward people with neurologically based disabilities. I had never realized, or probably thought about, that before. There was no insurance coverage for ABA or Floor Time, or any autism related treatment. We were on our own.

To be continued.

Glut 1 deficiency-Could it be? Part 2

2009-06-16T21:04:00.000-07:00

About a week after Liam’s 9-month appointment, I received a written referral in the mail that had instructions for our appointment with a neurosurgeon. I noticed that on this referral the stated reason was “trigonocephaly.” I had never heard this word before. I thought there was no identified, specific problem, just a host of ambiguous symptoms that needed the weigh-in of some specialists. I immediately Googled “trigonocephaly” and to my shock up popped a picture of Liam’s head. There were pictures and diagrams of babies’ heads with “the ridge” that we had been wondering about for so many months. I read that trigononcephaly, also known as metopic synostosis, is a type of cranial facial disorder (craniosynostosis) that is often part of a genetic syndrome. Trigonocephaly is an uncommon form of craniosynostosis. It basically means “triangle shaped” head because the early closure of this part of the skull often results in the baby’s head having a wedge or triangular shape. When a baby is born, its skull is basically made up of different parts that are not connected. This allows for the dramatic brain growth that occurs in the first years of life. When a part of the baby’s skull is fused too early it can cause pressure on the brain and skull deformity. The various forms of craniosynostosis can be mild to severe and if not treated with surgery can cause permanent brain damage and facial deformity. The metopic suture runs from the top of the head down the forehead toward the nose. This suture usually fuses by 12 months of age. I studied the various genetic disorders that often have trigonocephaly as a feature. There were so many medical terms used to describe facial features and associated problems in connection with these disorders that I had to write these words down and look them up. Then, I would study pictures of Liam to see if he had these things. I was obsessed. I was angry. I was particularly angry that no one identified the cause of his ridge at an earlier age. Once I had the word it was easy to find out information. Didn’t all of these doctors know about this? Couldn’t they have Googled it too? Usually babies who need surgery to open up the metopic suture undergo a craniotomy in the first few months of age. If Liam needed surgery, was the damage already done? Was it too late? By the time Liam saw the neurosurgeon he was already 10 months old. I was angry that the doctors did not tell us about trigonocephaly when they suspected it and I had to find out about it on a piece of paper. This was an awakening for me, no more sitting back telling myself not to worry when my gut was screaming that something was wrong. I would make certain that any professional working with Liam understood fully that I was a part of the team, that knowledge is power – it enables me to advocate for Liam, to know what questions to ask, to form my own opinion. Even if there is uncertainty or the news is bad, I wanted to know about it up front – no surprise referrals in the mail! I was a mom on a mission.

In all of my Google research, I realized that Liam really did not have features of these known genetic disorders. Most of them sounded pretty severe and the children had obvious deformities. There was one thing, however, that I did notice in Liam that I had not seen before – strabismus (crossed eyes). When I first read this word strabismus, I had no idea what it meant. I looked it up and thought “well that isn’t something that Liam has.” Nonetheless, I still went about my examination of his photographs and noticed that his eyes were not quite straight. I observed him in person and realized that his eyes did not seem to focus on an object or my face together. One eye would kind of drift off a little. It was subtle, but it was there. We were off to yet another specialist, the pediatric opthamologist. Our initial visit was unsettling as she diagnosed him with pseudo-strabismus, a condition where the eyes appear to turn inward due to having a flat bridge of the nose or epicanthal folds (skin that folds over the corner of the eyes). The opthomologist was certain that this was the case with Liam and uttered those now irritating words “we’ll keep an eye on it.” I read a lot about strabismus and how to detect it and I felt certain that this was something that was happening to Liam. I also read that strabismus is commonly associated with all forms of metopic synostosis as the fused skull restricts blood flow and sometimes brain growth in the frontal lobe and puts pressure on some part of the brain that affects vision. Unfortunately there was nothing I could do but wait until the condition worsened and it became obvious to everyone that he in fact had strabismus.

Over the course of several months Liam’s eyes turned inward and he became severely cross-eyed. This was so painful to me. My beautiful child was not going to be seen as beautiful by strangers. People stared. Children asked their parents “are my eyes crossed like that baby’s?” I overheard two women at the pool refer to him as “creepy.” We had no photos of him with straight eyes. Taking pictures was a reminder of the pain he may face growing up with “crazy eyes.” We went back to the opthamologist. She recommended that we use eye drops to dilate his stronger eye, making vision in that eye blurry, which would force his brain to use his weaker eye. Once the brain turns off the weaker eye, a child can lose sight in that eye permanently if it is not treated. The goal of treatment was to try and increase strength in both eyes and then Liam would have eye muscle surgery to align his eyes. He would most likely never truly use both eyes together, which would deprive him of depth perception. The surgery would be largely cosmetic and, in Liam’s case, he would probably require more than one surgery to keep his eyes straight. Strabismus can occur for a couple of different reasons and, unfortunately, in Liam’s case it was neurologically based. This means that his brain cannot integrate the two images taken in through the eyes and consequently shuts the weaker eye off to avoid seeing double. This was viewed as an unchanging situation and, while aligning his eyes through eye muscle surgery would help, it would not likely alter his brain’s ability to integrate two images into one and the problem would return.

Liam also began pediatric physical therapy following his nine-month check up to work on his motor skills. We met with the physical therapist weekly and she would teach us exercises to help Liam develop a variety of gross motor skills including unassisted sitting, low kneeling and tall kneeling (did you know that was a skill?), pulling himself to a standing position, “army” crawling and eventually crawling on all fours, cruising, and finally walking. We worked with him several times a day at home doing these exercises. Liam mastered sitting at 10 months, crawling at 12 months, and walking at 18 months. All later than average but still within the very outskirts of “normal.” To us this was not normal. We did not know of one other healthy child that didn’t walk until 18 months. It seemed like all of the babies we knew around his age were cruising past him, leaving him behind.

Liam was still not eating well and was maybe only 16 pounds at a year old. He was small and frail and in hindsight, not that interactive. He was a snuggly, loving, happy baby and to my recollection made eye contact, had a social smile, and babbled on time. It even seemed as if, for a while, he was learning to say “dada.” At least he was babbling “da, da, da, da, da” all of the time. Around 11-12 months of age, Liam underwent his first multidisciplinary developmental assessment. This was a ½ day’s event and included lots of different specialists from neurologists, speech pathologists, occupational therapists, etc. At the end of this assessment this team of specialists agreed that Liam seemed to be developing within the realm of normal but had a slight motor lag. He was progressing with physical therapy and they felt that he would catch up in time. It was the opinion of the neurologist and geneticists that his trigonocephaly was a minor anomaly that was not contributing to his motor lag. Despite this promising prognosis I still felt worried. My mama gut was telling me there was something really wrong. I felt guilty that I couldn’t accept their words of encouragement and believe that he would be okay. Somehow I knew he would not. I hated myself for thinking about him in that way but I couldn’t convince myself otherwise.

Liam received his 12- month vaccinations, including the MMR shot and Varicella (chicken pox). At this point I had reservations about vaccinating him further. He seemed sick all of the time and weak. I thought I had read that you should avoid vaccinations when a baby has a temperature or respiratory illness. Liam always had these things. The doctor said it would be okay, he was well enough for the shots. I wanted to say no, but I didn’t have the courage. I didn’t really have a scientific reason for saying no. It was just a mama gut thing and probably “media hype” about autism and vaccinations that was causing me fear. I trusted in the knowledge of the pediatrician and felt sure they would not be continuing the MMR shot if it was really contributing to the epidemic of autism…or would they? They had gotten some things wrong up until this point. I was losing faith. I still consented to the shots. I wasn’t ready to stand up to the system. The nurse gave the shots in Liam’s arm instead of his leg. He didn’t tell me he was going to do this. It all happened so fast I couldn’t stop him. Liam’s arms were so scrawny and frail it seemed like the needle would go all the way through. “Why did you give it in his arm?” I said with alarm. “At 12 months babies are starting to walk and we don’t want their leg to be sore and discourage their walking.” “You idiot! My baby just started to crawl. Don’t you know that? I don’t want his arm to be sore and discourage his crawling!” Okay, I didn’t say that but I thought it. I wanted to say it. I was starting to get pissed, everything was going wrong with my child and I had no answers! All of his symptoms were too mild to really sound off alarm bells or lead us to an answer, but severe enough to be obvious to everyone around him that something was wrong.

After Liam’s appointment I drove him back to day care. On the way he fell asleep, it was about 10 in the morning. I told the day care staff that he had had his shots and then fell asleep. He had some Tylenol they could give him if he seemed in pain or developed a fever. I went back to work. A few hours later the day care called. Liam had not yet awoken. They tried to wake him, but he wouldn’t stay away. We agreed to let him sleep and “keep an eye on him.” At 5:00 p.m. I picked him up. He was still sleeping. I took him home. Still sleeping. We tried to wake him, to get him to eat. He would slightly open his eyes but then go back to sleep. He had a slight fever. Later that evening I called the advice nurse and we were sent to the emergency department. Again, no real understanding as to why he would not wake, but it was considered a likely “adverse reaction” to his shots. He was given some fluids because he would not eat and was dehydrated. We took him home again. I was scared. I couldn’t believe it. I was again mad at myself. “How could I have let them give those shots?!” Every fiber of my being was telling me to say “NO!” When would I learn my lesson and stop taking his life so lightly? How could I be screwing up so much? Was I really that bad of a mom? All my life I wanted children. Now that I had one, I was ruining him.

Liam did eventually wake up, but he was not the same. He was drifting away from us before the shots and now he was gone. A couple of weeks after his shots Liam underwent his second developmental assessment through our local early intervention program – basically special education for children birth to five. I had faxed this program the results of his first assessment to see if he would qualify for services. Based upon those results he did not. At his second assessment I remember the evaluators rolling a ball to Liam. He would bat it back to them but would not look at them as he did this. I remember them commenting on this, making note of it. In my mind I heard them saying, “This baby has autism,” that’s what I heard in their comments about his consistent failure to look at them. Of course they did not say this, I was reading between the lines with fear. I so wanted to get up the courage to say something, to ask, “Do you think he could have autism?” But again, I said nothing. I was not ready to speak those words, to hear what they thought. Based upon this evaluation Liam did qualify for services due to delays in gross motor development, communication, and social emotional development. This assessment was done only about a month after his first one. Had he really changed that much since his shots or was the first assessment just woefully inaccurate? I knew in my heart that he did have delays in these areas and I was glad we were going to get some help.

To be continued

In this photo, Liam is around 9-10 months old. If you look closely you can see that his eyes are not perfectly straight, with his eye to the left turning slightly out. This was one of the photos that I examined after first learning about strabismus and trigonocephaly. Photos of him at this age were a little deceiving because he was not always looking right into the camera, so it was hard to determine if his eyes were misaligned or if they just appeared that way due to the angle of his gaze. I learned that one of the best ways to determine if a child has strabismus is to look for the reflection of the flash (the little dot of light). This should be in the exact same spot on each eye. You can see that, in this photo, the reflection is in the center of one eye and slightly to the right in the other.

Here Liam is all dressed up for Halloween at nearly 21 months of age. You can see the dramatic change in his eyes. At this time, we were using the dialating drops to try and force the his brain to use the "turned off" (crossed) eye. Even with his crossed eyes, Liam is still an adorable little guy.

This is Liam at age 2 years. You can see that his eyes continued to worsen over time. This is how many of his photos looked at that age. Heart breaking.

Liam at 16 months getting lots of help from family during a family reunion. Everyone spent tons of time with him practicing walking. By the end of that week Liam took 20 steps by himself. We were so excited. After we returned home and there wasn't a constant barrage of physical therapy, Liam regressed and wasn't able to take unassisted steps until 18 months of age. Just goes to show you more intensive help matters.

The Professionals

2009-06-15T22:01:00.001-07:00

Liam has had many professional people in his life. They are people who have evaluated him, taught him, treated him, judged him, poked him, scanned him, summarized him, loved him, tolerated him, understood him, and misunderstood him. Some have been the best things that have happened to him and some have been a nightmare. My memory for detail is not nearly as good as Angie’s but I will recall to the best of my memory some these people so that Angie can point out where my memory has failed. But, you know, they’re my memories so I will share them.

The first professional we dealt with was Dr Rappaport, Liam’s pediatrician. He was a very nice, gentle and soft-spoken man who never quite looked you in the eye. I don’t think that was because he had anything to hide. I think he was just really shy. I do believe he was a competent doctor but when we first came to him thinking that Liam might have autism, he was very reluctant to address it. He said you could not diagnose autism until age three and that we should just not ignore Liam.
“Ignore him?” I said.
“Yes you want to try to keep him engaged with you.” He said.
I wasn’t quite understanding what he was getting at. Did he think that we were not involved with our son? That’s why we brought it up in the first place, because we were trying to engage him and he wasn’t responding.
Liam was also not eating; at least not very much. It was a real struggle to get him to eat anything. Dr. Rappaport said that we shouldn’t power struggle with him over food and if we just left him alone he would eat and that kids won’t starve themselves. We explained to him that we understood the difference between a power struggle and a real problem. The fact of the matter was that Liam would have starved because if we set food in front of him and walked away he we would not touch it. He was not interested in it no matter what it was. He didn’t even like candy. The only way he would eat is if we spooned it in his mouth for him and he would take it with extreme disinterest, and even then just a few bites before he would refuse. Anyway, I figured that you would have to be engaged with somebody to power struggle with them and, hello, Liam was not engaged. We did not get much help from Dr. Rappaport which should have been our first clue that we would be hard pressed to find a professional that would really help us.

A little later, after Dr. Rappaport believed us (or decided to humor us) about Liam’s eating issues he referred us to a feeding “specialist”. The feeding specialist told us that Liam would eat if we allowed Liam to dip his food into something. Kids like to dip stuff. “Oh great. I thought. “Not only does our kid not eat normally, and not look at us, now he has a dipping disability.” This was the best advice we got from the eating specialist.

We later went to a gastrointerologist at Oregon Health Sciences University who specialized in feeding and failure to thrive issues. She was a very serious and officious older doctor who didn’t seem capable of smiling. I remember her feigning listening to our story about how Liam wouldn’t eat, and everything we have tried, and what a concern it was. She answered with. “Well if he doesn’t start eating, he may have to be admitted and have a feeding tube inserted in his throat.” We were horrified to hear this. He was eating enough to survive with our help, and we failed to see how a feeding tube would teach him to eat.
She continued. “I am conducting an eating study, and I think Cody would be a good candidate for my study.”
“I could’ve sworn we named him Liam.” I said.
“Excuse me?”
“His name is Liam.”
“This chart says Cody.”
“Can’t argue with the chart.”
“I must have grabbed the wrong chart.”
“I guess we’ll think about it.”
“Well please call me if you would like to have Liam in my study.”
“Cody.” I said.
“Excuse me?”
“Nothing.”

Liam had a ridge on his forehead that we needed to have looked at and we were sent to a neurosurgeon and plastic surgeon at Oregon Health Sciences University. Although it seemed clear to us that Liam had Craniosynostosis, a premature suture closure of the skull bones on his forehead, the neurosurgeon seemed to think that it was not associated with his developmental delays. I remember the plastic surgeon saying, “If that ridge bothers you down the road, I can just get up in there and burr it off.”

I was starting to get a little burred off at the cavalier attitude that these doctors had about my son. They all seemed to try to fit Liam into an agenda instead of expressing any real curiosity about Liam’s condition, or conditions. All these seemingly unrelated things could not be happening independently of one another. No one seemed to want to put the pieces together.

Aside from the medical community, there was the school system. Liam was enrolled in early intervention at age sixteen months with an educational diagnosis of autism. He was the youngest and smallest kid there. He was so small that they had to cut the legs off of a table and a chair for him to have place to sit. His first caseworker was a woman named Carlyn. Carlyn was a very empathetic and caring person who really seemed to get Liam, and us, and all of our concerns, and she was willing to address them as best she could. I say, “as best she could” because she was working in a broken system. We really felt like Liam was in a good place with Carlyn at the helm. She was the first “genuine” person who was a professional that we had dealt with up to this point.

At the same time we had recruited a girl named Katie from Liam’s daycare to work with Liam full time at home. We were just learning about autism therapies and Angie and Katie were learning them together. Katie was awesome. She was extremely tied into Liam and a quick study of whatever therapy we were doing. Liam loved Katie and they were literally best friends. Katie worked with Liam for two years and then moved to China.

After Katie, we found Liz who was similar to Katie in her enthusiasm, commitment, and instincts with Liam and was quite effective with him. Liz worked with Liam for about a year and then moved to China.

Damn you China.

At early intervention, Carlyn got transferred to another department and we got another caseworker named Kristen. Kristen was one of those people who had a hard time hearing what we were saying over the sound of her own voice. This did not go well. Everything that came out of her mouth was a confirmation of her complete lack of understanding of Liam and our goals for him. Her mantra was “We just want Liam to be functional in the classroom.” Our Mantra was “We just want Kristen out of our lives.” Kristen became emblematic of everything that was wrong with the public school system as it pertains to Liam and a catalyst for why we are now home schooling him.

Emily came to us as a behavioral therapist and did great work with Liam. She really got us over many humps with Liam’s learning and she became another best friend to him. She was really the first professional therapist who really got it. She worked with Liam for about two years and then moved to Texas.

Damn you Texas.

We also got hooked up with Dr. Willis. He was a developmental pediatrician and a gentle smiling man. We would visit Dr. Willis to discuss what we were doing with Liam and to get his feedback on what we were seeing. Dr. Willis didn’t work directly with Liam but was more of a sounding board for us to help us get some perspective on the situation. Sometimes Liam would go with us and sometimes it was Just Angie and I. Dr. Willis was very helpful for us in that he was a good listener and he validated our path with Liam. We always felt better when we left his office. One time Angie couldn’t make it to an appointment so it was just Dr. Willis and me. I actually got to talk this time (just kidding honey). I remember at the time saying to Dr. Willis that Liam was so tied into Angie, and I felt like he didn’t value me as much in his life. Dr. Willis said, “That is normal. Your time will come. There will come a time when he will want you more than anybody else.”
I said, “Watchu talkin’ ‘bout Dr. Willis?” I didn’t actually say that but I wanted to say that ever since I met Dr. Willis.
Dr. Willis was right. Liam did become really tied into me and really started to gain an interest in my activities. Now he won’t leave me alone.

Damn you Dr. Willis.

Over time we learned to not waste time with people who are not on the same page as us and we really have a great team now. We have some great young enthusiastic people working with Liam every day. They genuinely care about Liam and he is tied into each one of them. We are losing Laura, one of his lead therapists to the Peace Corps… Something about trying to do good things for others and so forth. But we know Liam is always going to have great people in his life. And he wouldn’t have it any other way.

Glut 1 deficiency-Could it be? Part 1

2009-06-14T20:16:00.000-07:00

Liam has had many medical “anomalies,’ little things that aren’t exactly “normal” but don’t quite add up to any identified medical syndrome or problem (not including the broad spectrum of autism). It really started before he was even born. During my 20-week ultrasound it was picked up that he had something called renal pyelectasis. At the time of the ultrasound we were sent home believing that everything seemed normal, “a healthy pregnancy.” A few weeks later while I was at work my OBGYN called asking if we had been told about the “abnormality” on our ultrasound. “Abnormality…no…what do you mean…we were told everything looked good.” My heart sank. I felt sick to my stomach. I couldn’t believe it. She went on to tell me about the renal pyelectasis, which meant something about his kidneys being enlarged and this being a “soft sign” for Down syndrome. I couldn’t breath. How could this be happening? I really had never thought something like this would happen to me, to my baby. I was shook up. We got set up with a neonatologist for a repeat, more sensitive ultrasound. This ultrasound was “normal.” His kidneys were normal size. “Maybe he just had to pee,” they said. “Had to pee! You mean you didn’t think of that before. You didn’t think to tell me of that possibility.” Okay, I had to calm myself. They were being cautious and I appreciated the follow-up and concern. Crisis averted. Move on. Looking back at this first experience of worry about Liam’s well being I wonder if this was a little warm up. An experience to sort of “pave the way” for things to come, to make all of the things that would happen during Liam’s first year of life less of a shock.

The remainder of my pregnancy was “uneventful” as they say. Liam was born three days after his due date a healthy 7lb, 8 oz baby boy. We were elated. He was so beautiful. Ten fingers, ten toes, perfect - no Down syndrome. I did notice this slight raised ridge running from the top of his head straight down his forehead. I wondered, “Is this normal?” No one seemed to be saying anything about it; I must be paranoid. “Stop worrying and enjoy your perfect little boy.” It seemed strange though. I’d never noticed something like that on any other baby’s head. Then I talked myself down again, “baby’s heads are supposed to look funny.” After all, he was just squeezed through a tiny space. Babies’ heads get squished during the birth process. In the hospital I never asked about the ridge. Later on I would wonder why. This was the first of many times that I suspected something wasn’t quite right with Liam, but didn’t ask. I think I don’t ask questions when I’m really not prepared for the answer. After Liam was born, I was so filled with emotion. The feelings of love and protection were so strong. I can’t imagine finding out in that moment that your baby has anything wrong with him, the pain would be unimaginable.

The next day Liam was examined by a pediatrician who gave his stamp of approval, “a healthy little boy.” He didn’t seem to notice the ridge on his forehead either. Again, I didn’t ask. I did note later that on his birth records “mild frontal ridging” was documented. Why didn’t anyone say anything? Did they not know what this was? Was it viewed as no big deal, a meaningless anomaly? I did manage to put it out of my mind for a while, as no one else seemed to notice (or so I thought). But as Liam grew, so did the ridge and it became hard not to notice.

A month or so after Liam was born I started to observe that his skin seemed darker than it had been. It seemed a little yellow. I took him to the doctor and she ran some labs including a liver function test. His bilirubin was normal but his liver enzymes were extremely elevated. I was told that they were equal to that of an alcoholic adult male. “How could that be? What does it mean? He’s just a tiny baby.” I was told that they did not know. “We see this sometimes and it usually resolves. We’ll keep an eye on it and retest in a few months” The reason for his coloring? Breast-milk jaundice. He’d probably have this jaundiced color for some time (turned out to be six months) but it is not dangerous. No correlation to his elevated liver enzymes. At the time I knew nothing about toxic overload or impaired methylation (a major detoxification pathway in our bodies). I didn’t realize that these elevated liver enzymes were possibly a clue that Liam’s body couldn’t efficiently rid itself of toxins and that his liver was likely overloaded. I didn’t know anything about the correlation between impaired detoxification and autism. I didn’t know anything about all of the toxins that exist in our environment, let alone in vaccinations. I didn’t even educate myself. I’m angry with myself every day for the cavalier way I parented Liam – not educating myself on the controversies surrounding such things as vaccinations, fluoride, pesticides, genetically modified organisms and our food supply, etc. I lived in a different world then, one where I was more trusting, less critical…safe.

I started back to work when Liam was about three months old. My plan was to breast feed Liam for at least a full year and to use a breast pump while at work. Unfortunately, I could not produce any milk using this pump. I met with the lactation specialist. She came to our house. I tried visualizing Liam. I looked at pictures of him. Tried to feel him nursing. Nothing. The lactation consultant eventually said “I think you had better start supplementing him with formula.” “Formula! No way. That’s not in my plan!” At the time it felt like I would be poisoning Liam if I gave him formula. It seemed such an irrational thought, after all millions of babies are raised on formula and they do just fine, but I couldn’t shake this fear. I now think of this seeming irrational fear as mother’s intuition and I have learned to listen and trust in my gut feeling. I eventually broke down and bought a can of formula, whipped up a bottle and fed it to him. “There, I did it. He’s fine.” I believed my fear was irrational and Liam would need to eat while I was away from him.

At Liam’s four-month well child check-up the ridge on his forehead started to become something of concern. At the time, Liam was being seen by a pediatric nurse practitioner. She was a kind woman who was attentive and caring. She began poking and pushing, and measuring the ridge “Hmmm…it doesn’t feel like bone.” She brought in a pediatrician from the office to consult. Together they poked and prodded and commented to one another, clearly not sure what it was. They sent us to have it ultrasound. “Seems like soft tissue. Probably nothing to worry about, let’s monitor it and see if it changes over time.” And we did, every check up, another doctor would be called in to consult but still no answer.

After his four-month check-up my worry about his head was coming back. I started examining the paperwork we were sent home with that detailed his check-up. I noticed that Liam had dropped from the 50th percentile to the 10th percentile in weight from his last appointment. I called the nurse practitioner.
“Did you notice his weight? Is that okay?”
“He seems healthy and is developing well. He’s probably just settling out to where he will be. You are slender, he probably will be as well.”
“Okay. Sorry to bother you.”
Liam didn’t seem to be tolerating the formula too well. It made him constipated and he wouldn’t drink very much of it at any one sitting. We tried him on soy formula, but this gave him wicked diarrhea and horrible gas pains. Back to cows milk formula. We mixed it with prune juice and this seemed to help a little. He still seemed to be a healthy, normally developing baby. He met all of his early milestones (not that there are a lot of them) and was just the easiest baby.

By six months of age Liam had started to cough a lot, especially at night. He began to have frequent elevated temperatures and developed his first ear infection (one of many, many, many ear infections). I can’t remember exactly how many times Liam has had a ruptured ear drum, but I think it’s been about five. Liam seemed a little floppy. He couldn’t sit up very well in his high chair and wasn’t starting to sit up unassisted. At first it didn’t seem to be that big of a deal. Babies develop at different rates. Other babies just seemed a little stronger. Liam was kind of content to just hang out in his bouncy seat or swing; he didn’t seem to want to explore the world around him. I chalked it up to personality. As the months passed, Liam still wasn’t progressing in his motor skills. In fact, it seemed like he was losing motor skills. Due to Liam’s chronic cough and temperatures, along with slightly lagging motor skills, the nurse practitioner sent us to Dorenbecher Children’s Hospital for a cystic fibrosis test, called a sweat test. They put heat packs on Liam to make him sweat and then collected the sweat to test it for this genetic disease. I didn’t feel in my gut that Liam had cystic fibrosis, but I was still nervous about the possibility. Fortunately, the test was negative. I was relieved – another crisis averted.

By nine months of age Liam had dropped off the weight chart completely and his height was below the 10th percentile (also quite a drop). He still couldn’t sit up by himself. He was consuming very little formula, even though he seemed hungry. Liam would cry out in hunger and quickly accept about 1 oz of formula, after that, he would refuse to drink any more. He still nursed well, but was starting to bite a lot and once he got some teeth, nursing became too painful and stressful to continue. His 9-month check-up was a real turning point for us. We had yet another pediatrician come in to consult about “the ridge” and now, added to the list of consult worthy items was Liam’s newly diagnosed failure to thrive, hypotonia (low muscle tone), gross motor lag, and chronic upper respiratory infections. This new pediatrician examined Liam and he and the nurse practitioner poked and prodded the ridge. They then excused themselves from the exam room and were gone for what seemed like eternity. When they returned they had several referrals for us including a pediatric geneticist, neurosurgeon, plastic surgeon, and physical therapist. “Why?” I asked. “What’s wrong?” They told me that this was just a precaution, they didn’t know if anything was wrong, but it was time to see some specialists.

To be continued.

Liam and Mommy shortly after he was born. Such a beautiful baby! I was in love.

Liam at a couple months of age after a bath. Such a cutie.

Here Liam is at about 10 weeks. I was dancing and singing for him and he was looking right at me, entertained. You can see his eye gaze and his ability to hold his head up and push his chest up while lying on his tummy. Something that was hard for him to do at eight months.

This photo was taken at Thanksgiving when Liam was nine months old. You can really see the ridge on his forehead in this photo. It was more obvious in person, but once it started to become a more prominent feature even photos could not conceal this growing concern.

Liam And Claire

2009-06-05T22:02:00.001-07:00

When Liam was two years old, we decided to get him a little sister. Actually, we didn’t decide that but it happened anyway. I remember one afternoon Angie coming out of the bathroom with the little stick in her hand saying, “I’m pregnant.” (I didn’t know we kept those things in the house). She was crying and I was speechless. I had no idea she even suspected she was pregnant.

My first thought was “What?”
My second thought was “How?”
My third thought was “How do you think?”
My fourth thought was “Oh.”
“Are you serious?” I said.
“Yes. I knew it.” She said wiping tears from her cheeks.
“This is just what we don’t need right now.” I said. We had always wanted two, maybe three kids but when it was clear that Liam had special needs, all those plans got put on the back burner and all of our energy went into him. We felt we had so much on our plates that we couldn’t possibly give another child the required attention. This just felt like a huge blow and I could not get my mind around it… yet. It just seemed overwhelming to think about another kid in addition to Liam. He needed so much. I didn’t want to take away from that.

It didn’t take long to realize we better get used to the idea of another kid. I had all these anxieties about not being sure if I could love another person as much as I loved Liam, and Angie worried that this one could have special needs too. How would we handle that? Along with the anxieties there was some joy that slowly started creeping in. At two years old Liam was starting to show interest in other kids and was already a little more connected to us and the world since we started really working with him. Maybe a little brother or sister would be a good thing for him. But…wow! Could we handle two kids? Other people can do it. Why should it be hard for us? But the money and the time…it was all going to Liam right now. But another little one would be pretty cool.

Over the next eight or so months we tried to prepare Liam and ourselves for a new addition to our family. Even though Liam really couldn’t understand what was going on, we still talked to him every day about it, thinking that maybe something was sinking in somehow. We slowly warmed up to, and embraced the idea ourselves. We definitely had the space even though the house we were living in was still under renovation (a slow process that continues today). We were both working full time but we planned for Angie to take a leave of absence from her work once the baby was born. Along with his school, we had a pretty good home program going for Liam with a great therapist who spent most of the day with him, and we knew that would continue. It was just a matter of making the necessary adjustments.

During this pregnancy, we were also working on another investment house that we were fixing up. When I say we, I mean that I was working my regular job and working on the house in all my spare time. Angie was supervising the job, or “bossing me around” as I like to call it (just kidding honey), so we definitely had a lot going on as Angie continued to get larger and larger….and larger. She really seemed to get much larger than she did with Liam, partly because in the end she was two weeks late with this one, whereas she was right on time with Liam. Another factor was that Liam was born in February, a cold month, but this one was in August during one of the hottest summers in Portland history. Angie’s feet swelled up to the point where I was convinced that she could propel a car, Flintstone style, with no problem.

We chose to not find out the sex of our kids before they were born. It was just something we agreed on, thinking that we really wanted that last final surprise at the end. We really didn’t care if it was a boy or a girl and weighed the benefits of both genders. A boy would be a great buddy for Liam but a girl would give us the best of both worlds. Our biggest hope was that this would be a healthy, typically developing child. My biggest hope was that both my children would be able to mow the lawn someday, and maybe pull weeds...and wash the cars.

Well, August seventh, two weeks later than the due date, at 10:00 at night Angie went into labor. Why is it always so late at night? That happened with Liam too. I was just getting into bed both times. It really isn’t fair (just kidding honey). This one came really fast compared to Liam. By the time we got to the hospital Angie was having strong contractions, one after another. When we got in the hospital, she went right into the delivery room and out came little Claire (there are more details than that but we all get the picture). The first thing I thought was, “Damn, that was fast.” And then I thought, “Liam has a little sister”.

At first Liam wasn’t really tuned in to this new little person in his life. I can remember one evening when we had Claire on a blanket on the floor and Liam was in a really hyper and silly space and he ran right over the top of her. He had no idea or concept of what he had done. We tried to explain to him what he did and how he really could have hurt the baby but he was in his own silly world at the time and couldn’t hear us.

We began to have fears of having to protect Claire from Liam, but that didn’t last long. Claire soon became a force to be reckoned with. As she grew, she developed a very strong personality and Liam could not help but take notice of her. By age two Claire was bossing Liam (and us) around. The contrast between Claire and Liam was like night and day. Liam struggled to engage with the world and Claire was just out there. We really started to appreciate how Claire forced us out of the bubble we hadn’t previously realized we had made for ourselves. Our focus on Liam had been consuming to the point where we felt we needed to protect him from the world and now we were seeing it differently. We knew Claire had a strong drive to engage with the world and we realized that we all needed to do this together.

As Claire got older and more aware, the bond between her and Liam grew and strengthened. She was the one kid who was around Liam all the time and Liam really started to focus on her. When Claire started to pass Liam developmentally, she really became more of a big sister to Liam and the cool thing was that she really does not see Liam as any different from any other kid. I remember one time Angie mentioning that Liam couldn’t talk very well and Claire said, “Liam can talk” with a puzzled look on her face. She really had no concept that Liam had a different set of struggles. Claire is five now and Liam is eight and the big sister thing has really started to kick in. Claire really takes notice of how we interact with Liam to try to help him along and she follows suit. One night I was listening in at bed time (they sleep in the same room right now because they both want to be together) and Claire was reading a bedtime book to Liam. When I say reading, I mean she was reciting it from memory. But she would stop at certain words and say, “What’s that word Liam?…Good. Good job” In a nurturing teacher voice. When Liam wants to get silly he goes up to Claire and says “Wanna go to the playroom?” with a great big excited grin on his face. They find so many things to do together including annoying the hell out of each other and out of us. Liam has figured a way to push Claire’s buttons by letting out a very high-pitched squeal that can even make Chester go run and hide. He does this with such obnoxious brotherly glee and it drives Claire crazy. After breaking up the conflict and getting things settled down it is hard for us not to be happy about this typical behavior. After all Liam used to not even notice Claire, let alone deliberately annoy her.

Claire is a very social little person but she is always happy just to play with her brother, and Liam is happy to have such a great playmate that fully understands him and sees him for who he is instead of what he can’t do. Claire is such a catalyst for Liam to help him negotiate his increasingly social world. I think back on what I said when we found out Angie was pregnant with Claire “This is just what we don’t need right now”. They say that life doesn’t give you more than you can handle. I believe this and I also believe that just when you think you have more than you can handle, life gives you something to help you handle it. There is no doubt that Claire is what Liam needed but she is also what we needed. She brought us the perspective that we were missing. She is exactly what we needed.

The Magic of a Puzzle

2009-06-03T21:32:00.000-07:00

I had this great experience with Liam the other day that I wanted to share. I think I’m probably more inclined to blog about the trials and tribulations, emotions and fears of raising and loving Liam, but I want to also be sure to share his accomplishments and those moments that I just want to bottle and savor forever. It is nice to have a forum to share these moments, to celebrate with others the little steps forward that inspire me and drive my passion and belief in Liam’s ability to heal.

It was a warm, sunny, breezy day so Liam and I sat outside on the front porch to enjoy the weather. I was still feeling tired from having pneumonia and had about an hour with Liam alone before Gary and Claire would be home from work and school. I brought a box containing four jigsaw puzzles, each one depicting a different type of construction truck, outside with us to occupy Liam during this time, as I wasn’t feeling up to any active play. Liam LOVES these puzzles because he has an absolute obsession with construction trucks. He was giddy and laughing, so happy. I opened the box to find all of the puzzle pieces jumbled up – I usually try to keep things highly organized for him because one of Liam’s significant deficits is executive functioning. He struggles with organization, planning, waiting, and has poor frustration tolerance. If things are not organized for him, it is really hard for him to see a task through. He can either become agitated because the task is too hard or takes too long to sort through everything and find what he needs, or he can become really silly and a bit destructive (throwing the pieces around or tearing them up would be common examples). Ordinarily having four different puzzles all mixed up would be a mini crisis. So, I opened the box and thought “crap, I’m not in the mood for this.” I immediately talked myself through a little attitude adjustment remembering that I can view this as an opportunity to help Liam with his frustration and organization, I just have to model a different perspective. “Oh crap” is not the perspective I want to teach. “We can do this together and it will be fun” would be more helpful. I started to show Liam how to organize the pieces. Each piece has a little shape on the back to help group the pieces for each truck together. “See Liam, we can put all the circles together.” I made a pile for each shape and tried to encourage him to do the same. Now Liam can easily sort and match shapes, but that’s not what he sees as the object of this puzzle. He wanted to get on with assembling that digger. To my surprise, Liam was just whipping through these pieces, quickly glancing at the picture side and knowing immediately if it belongs to the digger puzzle that he has begun to piece together. This is something that I can’t do. Some of the pieces are obvious as to what truck they belong to, but most of them (in my eyes) could be part of any one of the trucks. Liam seemed to know immediately if it belonged or not. I carried on with my sorting, still worried that the lack of organization was going to frustrate him. Liam carried on with assembling his digger puzzle.

In the past, Liam hated puzzles. He was horrible at them. He has not only struggled with organization, but also fine motor skills, and has had a typical autistic trait of not being able to see the forest for the trees. He just didn’t seem to get how to determine where a piece would fit. He didn’t really pay attention to the picture and instead focused on the wrong stimuli, usually the shape of the piece, attempting to fit pieces together by shape only. For example, we could be assembling a puzzle of Thomas the train and he would be trying to put a piece with part of the sun on it with a piece of the track. He wouldn’t use reasoning to see that the sun would go up at the top with the sky and the track would go at the bottom. It’s like the pictures didn’t even exist until the puzzle began to take shape and he would suddenly realize “Hey, there’s Thomas.” Consequently, puzzles have been a real challenge and not something he’d ever ask to do. Over the past few months, I’ve noticed a change. Liam actually has started loving puzzles, asks for them frequently, gets really excited when he gets a new puzzle, and has begun to be able to assemble them with much less help. Even so, I typically have to act as his “surrogate frontal lobe” organizing the pieces for him, helping see where a piece might go, keeping pieces that won’t fit with what’s been put together out of his reach, etc. I’d also have to be super enthusiastic, cheering him on, even if I were doing most of the planning and assembling.

On this particular day, aside from his ability to quickly sort through the pieces and find just what he needed, Liam actually assembled two whole puzzles completely by himself. I was carrying on with my little sorting project and looked up to see that Liam was working this digger puzzle fast and furious to its completion in record time. He then moved on to the mixer puzzle and did the same. He has never put a whole jigsaw puzzle together by himself. To see him complete two puzzles was simply amazing to me. I was beaming. I was cheering him on with the most authentic enthusiasm. “Yeah, buddy, that’s right. That does go there! Look at you go, you’re such a clever little boy.” All my celebrating really didn’t seem to matter to Liam. He didn’t seem to need it. He was in his own little version of heaven; enjoying seeing his beloved trucks emerge, happy as a clam. I could have put puzzles together with him all day. I had an urge to run out to the store and buy every puzzle I could find. I fought that urge, but did buy him one new puzzle the next day when we were at Fred Meyer. I couldn’t help myself.

Ordinarily, I might feel a little sheepish about sharing this moment with others. I’d think to myself “what’s the big deal, it’s just a puzzle that many kids half his age could do,” but that’s not the point. For me, the point is that all of these little steps forward are huge. One of the gifts that Liam has given me is to really appreciate just how intricate and amazing child development is. I really think that, if it weren’t for Liam, all of the little things that need to be mastered to do a simple jigsaw puzzle would truly go unnoticed. With Claire, it seems like she develops at lightening speed. I don’t even see her journey some of the time. I take it for granted. Having Liam has allowed me to marvel in her development because it seems spectacular and effortless. With Liam, his progress can seem so slow at times it’s almost invisible. Each day you put in effort, not sure where it’s going or if it’s doing anything and then one day, boom, he’s doing something that blows your mind. It fills me with so much hope and gives me the strength to persevere, to believe in Liam’s infinite potential. It inspires me to want to go in the playroom each day and play with him. It reaffirms that my job as his mom and teacher is to provide him with opportunities, gentle guidance, to do with him (not test him), and to encourage his confidence and internal motivation for learning.

Taking a child centered approach to learning can feel aimless to me at times because there are fewer clear markers of progress, no boxes to tick off, or drills to complete. I tend to like to be in control and I like for things to be organized, clear and concise. Liam challenges me each day to let go of control and to just be with him, allowing him to take the time that he needs. Liam’s personality and learning style requires this, he’ll fight you all the way if you try and push him when he’s not interested. Seeing that he is learning to organize, stay focused amongst a tiny bit of chaos, notice the relevant stimuli and use reasoning and logic, feels amazing. Seeing the smile on his face and absolute joy in doing a formerly detested activity is priceless. Liam’s mastery over these two puzzles is no less celebratory than when he potty trained, or when Claire learned to write her name. Each little step forward along this journey is a huge victory and makes me believe that anything is possible.

Store Trip

2009-06-02T05:58:00.001-07:00

Liam loves going places. Actually he has to go somewhere, anywhere on a Saturday or Sunday. The weekdays are highly scheduled for Liam, but weekends are different. You can’t just laze around on those days for too long or he will start to melt down. He’s cool for the first couple hours or so but the problem is that he wakes up at about 6:00 so by about 8:00 you better have something planned or life can get unpleasant. It starts out with Liam saying something like “Wanna go to the park? To the park?” and builds from there, “Wanna go to the park? Go to Target? Go to the store? Fred Meyer? Go for a hike?” You can hear it in his voice and see it in his eyes that he is not messing around. What he is really saying is “Look, I have enjoyed eating my gluten free pancakes and watching Thomas The Tank Engine and watching you drink coffee and listening to your morning Paul Simon fest. It’s been a good morning, but if you don’t get me the hell out of this house right now, I can’t promise there won’t be cereal and soy milk all over the kitchen wall.”

This particular Saturday we did have some grocery shopping to do so I agreed to take Liam to Fred Meyer. Liam loves Fred Meyer. Well, he loves this particular Fred Meyer because it has an escalator. He also loves Target for the same reason. Not all Fred Meyers or Targets have escalators. We made the mistake of going to a Target without an escalator once and Liam did not handle that well. It has gotten much better taking Liam out as he’s gotten older but you still have to be ready for anything.

So I said to Liam, “Want to go to the store, buddy?”
“Target?” Said Liam.
“No. Fred Meyer.”
“Fred Meyer.”
“Yeah, do you want to got to Fred Meyer?”
“Go to the park?”
“Well we have to go to Fred Meyer.”
“And then go to the park.”
“I don’t know. We’ll see.”
“We’ll see.”
“Where are your shoes?”
“Shoes.”
I yelled upstairs, “Honey, have you seen Liam’s shoes?”
“I don’t know. Did you look in his cubby?”
“Yes. They are not there!”
“Well I don’t know where else they would be!”
“Well, I’ll look again! I don’t know how I could’ve missed them it’s a very small…found ‘em!”
Incidentally, it was a good thing that it was just Liam and I going. Liam and I can get out the door fast. Angie and Claire are the exact opposite. Claire gets easily distracted just putting her shoes on. Angie also takes forever getting out of the house what with turning off all the lights I left on, and making sure the coffee maker is off, and making sure we have keys, etc. All this waiting is very hard for Liam and when he is ready to go out the door and has to wait for everyone else to get ready he just loses it. He will start screaming, throwing himself to the floor, hitting, and knocking things over. You can’t reason with him. As much as you tell him that we are going and we just have to wait for Claire or Mommy, it doesn’t matter to him. He has to go now!

We were out the door and in the car without incident. Liam really likes being in the car going somewhere he knows. He sometimes has this sort of cheerful babble on the way. It goes something like this: “Gonna go to the store yep escalator trains going through he tunnel go to Fred Meyer ride the escalator okay yep okay go see the train yep over the bridge.” This is like a song for me. He has so many words now and he can put endless sentences together. It has taken a long time for him to get to this point. He still can’t always tell you exactly what’s on his mind but he used to struggle just to say “dog”. I get the feeling when he rambles on like this that he is practicing all his words. I love hearing it.

So, here is how it works at Fred Meyer: The first thing we do is ride the escalator, usually twice. That usually sustains Liam for about three aisles worth of shopping. If he starts asking for the escalator or starts to get agitated we go back to the escalator and repeat as necessary. We don’t have to do this quite so much now that he is a little older, in fact he usually only needs to ride the escalator once now. It used to be much worse.

Another thing that can affect Liam’s behavior is food. He needs to be constantly nourished to keep his blood sugar up. If his blood sugar gets low he can be hard to deal with. This is true of most people but for Liam it is much more intense. He can really lose it. On this day Liam hadn’t eaten since he first got up and I forgot to give him a snack before we left.

He was doing fairly well in the store with the frequent escalator trips but I could tell he was getting more and more agitated. His asking for the escalator became non-stop and had more of a sense of urgency to it. He began trying to knock over soup cans or grabbing bags of rice and trying to throw them. We were almost done shopping but we still had to go through the check out.
“Escalator?!” Said Liam
“Yes.” I said. “One more time on the escalator and then we gotta go, okay?
“Go on the escalator.”
We made one last escalator ride and then headed for the check out.
“Escalator?!”
“We have to check out buddy. We have to pay.”
Liam dropped to his knees and let out a quick loud shriek. He began hitting me.
“Stand up.” I tried to remain calm and neutral. It’s really hard not to care at times like this that people are now looking. I start to wonder what they are thinking. They don’t know Liam has autism. I wonder if they think I have spoiled my kid to where he acts like a brat in public. I wonder if they think I’m a weak parent who can’t discipline his kid. If I put my hands on Liam right now, I wonder if they think I’m an abusive parent. I put those thoughts out of my head because that wouldn’t help Liam right now. I held Liam’s hand and helped him to his feet. He was still hitting me and trying to grab stuff out of the cart to throw. I was thinking that we just had to get through the checkout and get to the car. The checkout lady was trying to make nice comments as she rung me up. I’m sure she was uncomfortable. Liam kept hitting me and periodically shrieking and I was getting more and more agitated. I tried to remind myself that my job is to stay calm.
“Liam, we’re almost done.” I said
“Escalator?!”
“We’re almost done okay?”

We finished paying and headed for the exit. Liam was pulling my arm toward the escalator. “Escalator?!” He said
“No, buddy. We’re all done.”
He started shrieking and hitting me again as we went out the door and into the parking lot. We just needed to make it to the car. Liam was hysterical by this time and I was barely holding it together. He was really pissing me off.
“Stop it, Liam. Knock it off.” He shrieked and hit me all the way to the car.
We got to the car and I got him in his seat. As I buckled him in he continued to hit me and shriek in my ear. I said, “Knock it off, Liam. You sit there.” And slammed the door, probably harder than I should have. I went to the back to put the groceries in the car. Liam was still crying. “Calm down, Liam. Stop it.” As I put the groceries in, I started to notice that he wasn’t just crying. He was trying to say something. I went around to the other side door away from Liam so he couldn’t hit me any more and looked in. He looked at me with big wet pleading eyes and said, “Stuck?”
“What, stuck?” I said
“Stuck?”
I looked down and saw that his fingers were shut in the door. I ran around and opened the door. “Oh buddy.” I said. I looked at his fingers. It turns out they were stuck between the rubber weather strip in the door and the doorjamb so there was no serious damage but I’m sure it still hurt. Liam looked at me with the same big wet eyes with fear and relief. In that moment I thought how he couldn’t tell me what was wrong. He used the only word he could find and said it with such a desperate and pleading tone hoping I would understand. I thought about how I was so mad that I could have just ignored his crying and dismissed it as part of his tantrum and drove all the way home with his hand shut in the door. I really hated myself right then.

I pulled Liam out of his seat and held him in my arms.
“Liam, I am so sorry, buddy.” I said.
He clung hard to me quietly sobbing.
“I’m so sorry….I’m so sorry…I’m sorry.”
“Sorry.” Said Liam as the sobs became softer.
I stood there and held him as he clung to me in the middle of the Fred Meyer parking lot for as long as it took for Liam to stop crying. As he got quieter we held each other tighter as I swayed side to side with him. “It’s okay buddy. I’m sorry. It’s okay.”
“Okay.” Said Liam.
“Are you okay?”
“Okay. Go home.”
“You want to go home?”
“Go home.”

I got him back in his seat and wiped his nose and the tears from his face and we drove home.

At home I made him some lunch. He was tired and so was I but he really needed to eat. He ate most of his lunch. And his demeanor slowly changed. He was calm and together again. I was calm and still sorry.
“Feel better buddy?” I said.
“Better.” Said Liam.
“Do you want more food?”
“Go to the park?”
“Yes. Let’s go to the park.”

2004 Interview

2009-05-29T22:27:00.000-07:00

In 2004 a good friend of mine was in grad school for counseling. She had an assignment to interview someone with unordinary circumstances. I was honored that she chose me. That was five years ago but the thoughts expressed are still poignant today:

Interview with Gary Paquin,
The Father of Liam, a Child with Autism
Megan Wheeler
Northwest Christian College

Interview with Gary Paquin, the Father of Liam, a Child with Autism

Megan Wheeler (hereafter MW): How do you feel about my conducting such an interview with you regarding your feelings about having a child who is not typically developing?

Gary Paquin (hereafter GP): I feel good about it, because I like when people ask me about it.

MW: You like people to ask you about it?

GP: Yes. I can see people wondering and I always wish that they would just ask me about it. I want to tell them, “He has autism.”

MW: That leads into my next question: how you refer to your child’s disability, and how you prefer others to refer to your child’s disability, if indeed ‘disability’ is a term with which you feel comfortable?

GP: That’s a good question. I refer to his disability in the simplest terms that people can understand. So I say that he has autism, but it’s actually more complicated than that. I don’t personally see him as an autistic child. I see him as a child that has something that gets in the way of interacting normally with the world and that potentially can be lifted at some point. I don’t like the term disability, but it is what it is, and I am not all that invested in making politically correct statements about what something is. So that’s what it should be called. One of the distinctions that I do prefer is that people recognize that Liam has autism, rather than calling him autistic. When people refer to him as autistic, it is as if that’s all he is, and that’s not true.

MW: Would you describe Liam for me?

GP: Well, yes, Liam is a wonderful 3 year-old boy, who is full of curiosity and spirit. He’s funny, he’s smart, he’s everything that I would want in a son. He loves books and music. He has even choreographed some of his own dance moves. He knows what he wants, but has a hard time communicating it to others. He tries hard, gets frustrated, but then, with some help, he figures it out and learns new ways to communicate every day. He’s a hard worker. When it comes time to be on task, he gets down to business. At home Liam has a big room full of fun equipment to help him with his motor skills, and he loves playing and being silly in this room. Liam knows all the letters of the alphabet and all his numbers up to 20. Liam has a personality that undeniably bursts through the veil that attempts to hold him back from the world around him. It is easy to tell that he wants so badly to be a part of this world in the same way that you or I do, and he puts the hours in to get there. I believe he will make it. Liam has a lot to offer the world. He really affects the people around him in a positive way. People can't help but love him.

MW: That’s a wonderful description, Gary. Liam does indeed seem to be a very special boy. What is your level of awareness or consciousness about the discrimination or oppression that Liam faces or that you as parents might face?

GP: I don’t feel right now that he’s at a point where socially he’s discriminated against, although educationally we’ve had some struggles with educators viewing him in a certain way, an inaccurate way, and I assume that will always be something that we will struggle with. I think it’s when he gets older, though, that I worry. Kids are cruel. And you think about when he gets to the age to start dating, are girls going to want to go out with him?

MW: Can you tell me a little about those struggles regarding educators, their inaccurate views of Liam?

GP: Well yes. We’ve really had some amazing people who’ve worked with Liam, and these people have been able to recognize that we, as Liam’s parents, we know our child better than anyone, that we have educated ourselves and continue to educate ourselves about autism and the unique ways in which Liam struggles with autism. Unfortunately, however, we’ve also had educators tell us that we need to accept that his word for dog is “da” and that that’s the best he can do, that essentially he is retarded and that we need to lower our expectations as such. What was the second part of the question?

MW: Are you aware of being treated differently than other parents; are you aware of being looked at or people reacting to you differently when you are out at the grocery store or in a restaurant, for example?

GP: Yes, there’s a little bit of that. You can see that people are aware that your kid’s different. He’s acting differently and sometimes you can see that they don’t know what it is, and you want to just say he has autism. But it’s not something that you can really just talk about, so that can be a little frustrating at times, but you get used to it too. A part of you just says, “well, that’s my son, that’s who he is, and if he acts differently then no one should have a problem unless he’s hurting somebody.” So I really just don’t let myself care about what they think.

MW: I would like to ask about your family’s acceptance or lack of acceptance and how that has affected you?

GP: We don’t feel that most of our family members fully embrace what we’re going through, what we’re dealing with, or the interventions that we are using. We get the support, but I don’t think there’s a level of really trying to understand what’s going on and what we’re going through. That’s a generalization. There are some family members who really do get it and who really are supportive. I think that in general most of our family members mean well but really don’t completely get it.

MW: What about your interventions?

GP: Even though what we are doing is research-based and has been proven to be effective, it’s not part of mainstream medicine, so it’s not validated by the mainstream medical community.

MW: How does it feel to be embracing something that isn’t mainstream? Is that new for you?

GP: Not really. I have always been interested and open in one way or another to alternative forms of treatment. I give validity to anything as long as you get results. So, when mainstream medicine doesn’t offer you anything, and you see that there’s a possibility that something else will help, I see no reason not to try it. If you get results, you keep on and, if you don’t, you move on. That’s the way I see it. If you don’t explore all of your options, you’re missing out on some opportunities.

MW: Do you have family members that believe that Liam does not have autism?

GP: I think that they all believe it now, but it took them time. I think that it was probably different for different family members. There was some element, I think, of denial, and there was some element of “oh, they’re just over reacting; every kid’s different, every kid develops differently; so, he’s not crawling yet, but. . . .”

MW: It sounds like it must have been a very difficult time for you and Angie?

GP: Yes. It’s not only that, but it was the time that you need support the most and you’re not getting it, and I think that they think they are giving it to us. But it’s just frustrating, because you think that they are understanding something, and then something comes up and it becomes very clear that they’re not.

MW: When did you first recognize that your child had autism?

GP: Well, it’s hard to pinpoint exactly. I think the first time I thought it in my head was about at age 10 months. The first time either Angie or I spoke about it was when Liam was about 14 months.

MW: So you had the thoughts for a time before you were able to talk about it?

GP: Yes, we had friends who had babies Liam’s age, so we could always kind of compare, and we knew that Liam was developing differently than other babies. When he was a baby, we would hold him up to look at us, and he would do everything he could to avoid looking into our faces. We later found out that there is just too much information there for a baby with autism to process, that looking into our eyes was simply too much stimulation for him. It was really after his first birthday. We had a party for him, and he was just in his own little world. It was after that, right around there, that we first talked about it openly. His birthday’s in February, and the Christmas before that birthday we were getting photos taken for Christmas cards, and I remember that we were trying to get Liam to look at the camera and he wouldn’t look. You know, most kids will just naturally look where your voice is. If I say Claire’s name, she turns her head immediately. So there were things that kept getting more and more prevalent, and then I was the first one that said, “I think maybe he’s autistic.”

MW: What an intense time that must have been for both of you, when you were deciding whether or not to share those thoughts with one another.

GP: Yes, it was a scary thing to say for the first time. Because at the time we knew nothing about autism except for, you know, Rain Man. We had no idea really what we would be dealing with, and, as far as I knew, autism was what it is, that’s what you got. But I’ve found out that it doesn’t have to be what you’ve got. In some cases it does, and in other cases it doesn’t.

MW: What information did you get at that time from your pediatrician?

GP: He just said you really can’t tell anything until age three, and so basically he said just don’t ignore him. That was his advice, just don’t ignore him.

MW: My goodness!

GP: And, you know, I was stupid. I just thought, well, he’s the expert. Well, it turns out that he’s not the expert. The expert is the parent, if the parents choose to be the expert, and that’s what Angie chooses to be. I’m not the expert Angie is for Liam.

MW: But you’re becoming an expert as well.

GP: I really haven’t put the time in to read the books. I’ve read some books, but not nearly the scope of what Angie reads.

MW: In my experience as a preschool teacher, I have seen that it takes a great deal of courage for parents to get to the point where they are able to accept that their child has a delay. It often takes a great deal of persuasion by the teachers in order to support the parents in that acceptance. I have not seen yet a case in which the parent advocated for their child to be recognized as having autism.

GP: Well, in Angie’s mind, she had no choice, and that’s the way it should be, and she was devastated. We both were, but I was kind of more shut down, and she was breaking down and crying all the time, and it was a hard for me. It makes me sound like a bastard, but I just felt, “I can’t deal with this and your feelings too, so just keep it to yourself.”

MW: I think that that’s a classic response that families have when dealing with any kind of grief or loss, because each person is going through his or her own process of acceptance, the grief that each family member feels can affect other families profoundly and people often respond with an innate need to protect themselves from one another’s grief. From what I have seen in my work with families who have had to accept that their child has a disability, there is a process of grief that is involved, a sort of letting go of the ideal child, a process of facing that loss in order fully to accept this very real child.

GP: Yes, we each saw it differently. It was a tragedy for Angie, and it wasn’t for me. For me, it changed our thoughts about his future and our expectations about what his future will be, but I just saw him as my son. I didn’t see it as a tragedy. But that distinction was hard for her. And her feelings were hard for me. We had a really hard time just being with each other, because we weren’t on the same page.

MW: Can you tell me about that process?

GP: Well, I’m not sure how we resolved it. It was partly, I think, having to accept that we were coming from different places, and I think that I could accept it more readily than she could.

MW: You could accept that you were coming from different places?

GP: She just couldn’t understand how I could not see it as a tragedy, and I don’t really know how that resolved itself or if it resolved itself. I mean it’s not an issue anymore,
but. . . .

MW: Why do you think that Angela needed you to join her in viewing it as a tragedy?

GP: I don’t really know why I didn’t view it that way. I think maybe, that . . . maybe, I’m afraid to see it that way. You know, maybe if I acknowledged that it was a tragedy, it would be too hard for me to deal with it. I never thought of that before, before just now. And maybe deep down I did think of it that way, but I didn’t acknowledge it, and that attitude, if it were me alone, would not have helped Liam. Because Angie did see it that way, it motivated her to seek the information, to educate herself, to find out what we could do to support Liam, to find treatments for him. I would not have done that, you know?

MW: What would you have done?

GP: I probably would just have listened to the doctors, because I would have thought, “well, they know what their talking about.” I mean, eventually maybe I would have networked with somebody and thought maybe there’s something that we can do, you know? But I don’t think I would have put the energy into it that she did, to really find every possible answer and resource.

MW: Do you think that it changed you in any way to have moved from that point of seeing the doctor as expert to realizing that actually you are the parents and so thus you are the experts?

GP: Yes, I think it has. It’s hard to say how, but I think my view sort of changed in a sense that maybe people need to take more responsibility for their own lives. I mean, I’ve always kind of felt that, but maybe it reaffirmed that it’s my life, my responsibility to my child. I can’t always rely on other people to make the right decisions.

MW: Wow! It can be very difficult to lose that comfort level, the comfort that’s provided in trusting in a larger being, whether it be God, or our parents, or our doctors. It can be scary having to recognize that you are the one that holds that place that takes a great deal of courage.

GP: Yes. You know, what if he had downs syndrome? In some ways it would be a hell of a lot easier, because you know what that is. Autism is so enigmatic and there is nothing concrete about it, whereas downs syndrome is what it is, and everybody knows and accepts that. But I would not change Liam for the world. If I had a choice of having a typically developing kid or Liam, there’s no question.

MW: In a way it seems like the fact that Liam has autism makes your bond with him that much more special.

GP: I think it does, because you know he needs me more.

MW: Have you had much interaction with other parents of children with autism?

GP: I have not, but Angie has. We did go to a group which was for parents who had children on the wheat free dairy free diet, and it was great to feel that support, but we are just so busy right now that it’s hard to follow through. Angie has consulted with other parents online. So there is a little networking that goes on, but not a support group. I do think it would be good for us, though, at some point.

MW: What do you think your greatest challenge will be as far as dealing with discrimination as Liam gets older?

GP: I envision that he will probably get picked on and that would be hard for me. So that’s the biggest thing I worry about. We are gong to put him in private school, but I will always feel more protective of him than of Claire, I think. But you never know, because he could make a full recovery and become capable of taking care of himself, his future is so unknown.

MW: If you could be candid with your family, what would you ask of them?

GP: Man—that’s a can of worms. I have never really been able to articulate what I need from them, because it’s such a gray area. I guess that what I would probably ask them would be to accept that what we are doing is what’s best for Liam and to support us 100%, and to ask us all of these questions that you are asking me, that no one ever asks us. I would want them to try and understand about, not only Liam’s condition, but also how it affects us, about how it affects them, about how it affects everyone. I would want them to be more open about it. Each family member is different in terms of his or her level of support, but I don’t really feel that in general we get listened to. I would like them to be able to make an effort to understand where we are coming from.

MW: As your friend and someone who is in the field of educating young children, what advice would you give me about working with parents of children with autism?

GP: I think that it really depends upon the level of involvement parents choose to have with their child. In interacting with parents like us, my advice is to acknowledge that as parents, our input is valid and important, to acknowledge that we are the experts when it comes to our own child. I think that it’s very important to listen to parents. If they are parents who are putting all of their trust in you, it’s very important to help them understand that they need to become the experts, that it is their job to advocate for their child, that what their child is getting at school is going to be a drop in the bucket, and that the education needs to continue at home. Parents need to understand that their interactions with their child are more important, than anything that they learn at school.

MW: The issue of not being listened to, of not being heard, seems to be an issue that has permeated this entire experience for you. It strikes me that this is a key component of all forms of oppression and discrimination: not being allowed a voice.

GP: Yes! That has been a very hard thing for us.

MW: Are there any other feelings that you would like to share?

GP: Well, I do feel that I haven’t lived up to some of my responsibility by not keeping up with all of the information that Angie has kept up with. If something happened to Angie tomorrow, I would be lost. I mean I would know a lot of things—what to do with him, where to go, and what programs to put together for him, you know—but I would have a hard time.

MW: So what does that feel like?

GP: I feel guilty and sort of impotent in a way, you know, like I can’t keep up with her. And I feel like I’m lazy, because I just let her do it, and I just follow her lead. I mean, we make decisions based upon the information she brings in, so it’s not like her making unilateral decisions. But I trust her completely for information and what she wants to do.

MW: Yes, and you work very hard and put in long hours thus enabling Angie to stay home and be there for both Liam and Claire. I think that it is important for you to come to terms with the fact that each of you has an important way of contributing to the relationship and to the family. And it’s so great for Liam to have both of those parental responses.

GP: Well, yes, I know that that’s true. And, you know, it doesn’t mean that I don’t get sad once in a while. I mean, I wish that he were typically developing. I wish that he didn’t have autism, but you know, why wouldn’t I wish that? Part of that wishing is hoping that it will be, sometime in the future. I do a have a lot of hope for him, but sometimes it hits me that he could struggle his whole life with this and not have the kind of life that any parent would want for his kid…

MW: I was wondering about how that must feel to worry about getting behind knowing what you need to know about how to deal with your own child and to believe that you have to consult books in order to keep up about him? And I guess it just makes me a little sad to see that you seem to undervalue what you bring to your relationship with Liam: your love and acceptance of him as a person and the simplicity and purity of that love. I think that that is a huge contribution to his life.

GP: Well, yes, it is huge, and Angie loves him in that same way. I totally think that my relationship with him is as important as Angie’s is, and we have developed a sort of therapy in how we just play with him. Liam and I have certain things that we do. I say, “Liam do you want to touch the ceiling or do you want to have a raspberry on the cheek.” It starts out as a game and becomes a routine. Through play we make those connections. We have this thing that we call poof toss in which I toss him into a big pillow, he loves that. What ever we do with him it’s always about helping him to learn to make those connections.

MW: I have one last question? How do you feel about having gone through this interview with me? Did you have any concerns about it beforehand or any anxiety? Did any issues and feelings come up for you towards me as I interviewed you?

GP: Actually, it was somewhat cathartic for me to be able to talk about it. The first cool thing for me was having someone take enough interest to sit down and to write out some well thought out questions and try to get an understanding not only of Liam, but also of my thoughts on it, my struggles. I have never had a forum or an opportunity to just talk about it, so it’s been great. I really looked forward to this, and I didn’t have any anxiety at all. I was able to be open and honest about my feelings and what we’ve been through, and like I said it was cathartic.

MW: I really appreciate that. You know when I first read my syllabus for this class and saw this assignment, I thought that I would like to interview you and Angela, but then I just wasn’t sure. I didn’t want you to think that that was my focus on your family. It was really a special thing for me to understand a little about your experiences with being a parent of a child with autism and the struggles you and Angela have had. It has also been very special to see you as a father and the bond that you have with Liam. While I have worked with children who have autism and of course their families, I have never had the opportunity to have such a candid discussion. I feel that it will help me in working with families and that in the future I will very much be aware that it is imperative that I make sure that parents feel heard. I really admire how you and Angela as parents have advocated for your son, Liam and I believe that Liam is a very fortunate little boy to have been born into such a caring and supportive family.

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Love And Acceptance

2009-05-28T21:53:00.001-07:00

One of the ideas that I had for Liam's website was to blog about our experiences in raising a special child. I haven't really gotten around to it, probably b/c I don't know what to say, don't feel I have the time, etc. But Here I am a 1:00 in the morning, recovering from surgery and fighting a fever for three days now, unable to sleep with a million thoughts running through my head. So....no time like the present.
My hope in doing so is that by opening up about what it is really like to raise a child with a severe disability I can be active in sparking change for myself, for Liam, for other families and their special children, maybe for society. My goal is to share with people who have or have not walked this road with a child an open look at what it is really like so that there is more opportunity to develop a deeper understanding of what it means to have a disability or be the caretaker of someone who is disabled.
I consider myself a fairly private person and for most of Liam's life I feel that I have hidden some of my deepest emotions and greatest moments of triumph from everyone. This leaves me feeling alone, disconnected from the world, like a ghost of a person, a shell of my former self. In doing so, I also feel like I hide Liam maybe because I'm fearful of people judging him or me, maybe because I'm just more comfortable in our little bubble. The most important principal of the Son-Rise Program is the idea of total love and acceptance. It is through love and acceptance that change can occur because this is when you feel most comfortable, open, available, rather than frustrated, stressed, pushing, disappointed. I have come to find this principal to be both the most useful and the most difficult to achieve. I think my journey in achieving total love and acceptance for Liam, all parts of him, and for myself, starts with being more honest, open, authentic. So, mostly, blogging about Liam is for myself, but I hope that it will reach others to educate, inspire, and to feel more connected to people who are different. I also hope that perhaps my words will resonate with another parent out there who may experience the same emotional whirlwind as me, in turn helping us to all feel more connected, loved and accepted.
One of my greatest challenges in being Liam's mom is feeling like I vacilate between viewing him as a "normal child" and seeing his significant deficits. In our everyday life, to me, Liam is just Liam, he's my version of "normal." He's my son, I know him so deeply and so fully, that I almost don't see his disability. Cognitively, I know that he is disabled, but I just experience him as totally normal. Then, out of the blue, I will have an experience that shatters this peaceful little place to be and sends me right to reality where I come face to face with the profoundness of his disability. This is a hard fall and it amazes me that I fall every time. For example, I'll have an occasion to spend time with another similarly aged "typical" child and I will see ALL of the things they can do - play team sports, shower themselves, do math - the list goes on and on. Liam still struggles to follow directions that involve distance (go upstairs and get your pajamas), can't converse, can't write his name or brush his teeth. Most of the time, I totally accept these things about him, I also know that in time, he will improve and be able to be more independent - just on his time frame. However, coming out of my bubble causes me panic, grief, and lots of feelings of inadequacy about the choices that I make for him. "Maybe he'd be better off if we put him in school, maybe he'd be doing better if I just tried harder, did more", and on and on and on. The total opposite of love and acceptance. I begin to push him, get agitated with him, and then feel guilty for my behavior, my feelings - it's not his fault and he doesn't need his own mother judging him.
Recently, I had just such an experience, but it was actually the worst type of fall for me. Because Liam has been homeschooled for nearly 3 years and because I got frustrated with trying to work with the school system, Liam lost his eligibility for special education. Not a big deal, he clearly qualifies, but the process of qualifying him is time consuming and less than a pleasant experience. One of the things I want most in life for Liam is for people to see him as I do (at least most of the time). A whole child, a child with a sense of humor and imagination, who is strong-willed and opinionated, who is affectionate and loving, interested in experiences and the world around him...capable. One of the biggest issues I have had with our special education system is the system's seeming inability to see children with disabilities as children first, label second. I know that there are individuals within the system that do see the child first, but as a system as a whole it just doesn't seem set up to do this. For this "evaluation" we had three "specialists" come to our home to observe Liam. Immediately after letting them in the door, all of my past frustration with the school system came flooding back and I began to regret my decision to do this. It's interesting to see three specialists who work with children fail to interact with a child as though they are a child, not a lab rat. There is no greeting, warm-up, play, make the child feel comfortable - engage the child interact with him. It was immediate observations, taking notes on clipboards, trying to "test" him to see what he can do, and commenting about him as though we weren't there. Liam on this day was playful, engaging, immediately greeted the three "ladies" saying "let's go to the playroom" as he guided them by the hand showing them the way. He was all grins and silliness, anticipating that they had come to play with him. Now I view this as awesome. This is a child who used to show absolutely no awareness if his own mother walked into a room. He never greeted people, and was pretty much content to fling string or rip paper while lying on his back staring at the overhead lights. To me he has come so far and is so open to the world - the world of people. In the report that was later written up about their observations, his behavior was viewed as "too boisterous for the occasion." The majority of the report was similar, pathological language for almost everything he did. Now, some of what they had to say was correct and true, but much of it was not yet. I felt like all of their observations of Liam were made through this lens of autism, and that is what informed their opinions about what they saw. They didn't see a child, with no preconceived ideas to guide them, able to see him as a unique individual. That, coupled with their inability to interact with him as a child, leads to inaccurate assessment that is supposed to inform perfect strangers about what his educational needs are. In our experience, most of the time, these broad generalizations have led to the wrong interventions for Liam. I actually really don't care that much about that right now because Liam is not in school and they don't direct his education. What was really hard was sitting through a meeting with several teachers and specialists, none of whom know Liam, and reading through this report that uses the most negative and pathological language to describe nearly everything about him. Sitting in that meeting I immediately felt that huge sense of regret about being there. I felt the sting of tears coming to my eyes and fought hard not to show my fragility. I felt like storming out of the room, and fought that urge too. Instead I listened to what they had to say, new better than to contradict them as this has tended to be viewed as "denial" and doesn't usually result in any meaningful change. Now, there is a part of me that felt hurt by this report because of its pathologizing nature, especially regarding the things that we see as wonderful things about Liam, but there was also part of me that was hurt because some of it was truth. There was that fall from my bubble where I come face to face with reality in a room full of strangers who don't know my child. I instantly feel the sting of how people must view him. At home, Liam is surrounded by people who know him well, love him deeply, and believe in his capability, even knowing that he is significantly disabled. They see him as a whole child and are eager to share and celebrate his successes and problem solve his challenges. In this setting, it feels protective, safe, loving, a place where Liam is loved and accepted for who he is, not what he can or can't do. When his difficulties are revealed to the world, especially when their viewed differently than how we see him, it feels like being stabbed and that fierce mama protection kicks in hard.
Now this experience hit me hard for a while. I had a hard time letting go of it and began to question my decisions for Liam. It challenged my quest to let love and acceptance be the primary guide in our efforts to help Liam develop. It made me wonder "where is Liam's community? Where does he belong? What would he say he wants if he could tell me? Are we forever going to be cloistered in our home where it is safe from judgment - from facing reality? Is that love and acceptance?" I could go on and on. These are the questions that haunt me, that challenge me, because what I want most for Liam is for him to have a place in this world - to be known, loved, accepted. How best to achieve that, or is achieve the right way to look at it?
After several days of wallowing in my self pity and fear for the future, I logged on to the Son-Rise Program groups that I am part of through facebook. There I experienced such honest love and support for parents experiencing the same thing as me. Such inspiration and dedication to these children as whole beings, to us parents fighting for them. I was moved to tears and filled once again with a sense of conviction that striving for true love and acceptance is the most important principal to live by - Liam deserves that, I deserve that, we all do. I don't know if I'm doing everything I can for him, or the right, the best, the most effective intervention - how can one really know that. Most of the time I do know that I am doing my best and that my intentions for him are true and full of passion. I do know that for him to know that he is deeply loved and accepted, even if stopped making gains, is the greatest gift I can give him and give myself as his mother. Now, if I can just hold on to that knowing.
For any of you who made it through this long post, thank you for listening.

Liam And Chester

2009-05-28T21:27:00.000-07:00

On Liam’s 6th birthday we decided, for some reason, that it would be a good idea to get him a dog. We got the idea while we were camping at the coast with a group of friends. Many of the other campers brought their dogs. There were about six dogs and Liam really took an interest in them. He seemed to really want to hang out with them and he would just sort of follow them around…at first. The dogs also seemed to take a shine to Liam and you could almost hear them saying after much discussion “Okay, I guess you’re cool. You can hang with us.” The next thing I remember is this pack of six dogs running down the beach after seagulls with a shirtless grinning Liam right in the middle of them. I immediately had visions of Mowgli or some National Inquirer boy raised by wolves, but Angie and I looked at each other thinking the same thing. Later we discovered that we weren’t thinking the same thing at all because I was thinking, “We should get him a dog”. She was thinking, “I hope he doesn’t hurt those dogs”.

On the way back from camping we talked about how Liam really liked those dogs and maybe it would help him to have a dog. Liam was so over dependant on us to entertain him all the time, it felt like a good idea for him to have a companion that could give him attention when we couldn’t. Maybe he would go out in the back yard without needing to have us out there with him all the time if he had a dog to hang out with. Angie reminded me of when we had a dog before we had kids and how it was a hassle with the mess and the shedding and the mess and the barking and the mess. I remembered all those things but completely chose to ignore them because I have this condition where, once I get an idea stuck in my head, I tend to pursue it beyond all reason.

Angie did agree to look into it and we started researching dogs and autism and found out that there are therapeutic dogs for autistic children and that it is very common for autistic kids to bond with dogs and that it can really help them negotiate the social human world. We also found out that these special highly trained dogs cost around $13,500 and that does not include food or a squeaky toy. We also learned that these dogs are really more geared toward kids who are more shut off from the world than Liam was, and the commitment to this dog is that he goes everywhere with the kid; to school, the grocery store, church, the bingo parlor, Chucky Cheese, etc. and is viewed the same as a seeing eye dog and has to be accepted at all those places and that if we don’t have the dog with Liam at all times then we are bad people for not allowing the dog to fulfill its purpose in life. While we really did admire this kind of commitment from a dog, we just could not reciprocate.

I think Angie thought that was the end of it, but not for me (remember my condition?). I still thought that Liam should have a dog but he didn’t need an expensive super dog. He just needed a good all American mutt to pal around with. Angie acquiesced with two conditions: a reasonable sized dog, and a non-shedding breed. Well I could see I had my work cut out for me to find the perfect breed. I Googled “non-shedding reasonable sized dog” and there it was: the Labradoodle. I am going to say that word only once because it is a stupid name for a breed and totally belies the coolness of the dog. What it is is a half Labrador Retriever and half Poodle. It’s hard to conceive of what this dog looks like until you actually see one. It’s a big shaggy mutt looking dog that is not supposed to shed because it is half Poodle and best of all, it doesn’t look at all like a Poodle. This breed can range in size from forty pounds to about seventy-five pounds. When Angie said “reasonable size” I thought she meant that she didn’t want some little yappy ankle-biting dog. I found out later that’s not what she meant at all. The size range was agreeable because Angie was thinking in the forty pound range and I was thinking in the seventy-five pound range; minor details though because we agreed on the breed.

Liam’s birthday was a few weeks away and we had been searching for a good and reasonably priced Labra…half Lab half Poodle. We discovered that most of them were not reasonably priced and that they were in great demand. So, we realized that what we were really looking for was a trendy designer dog. This was a little disconcerting but it didn’t matter at this point because we, and when I say we, I mean I had already made my mind up. I finally found one that was reasonably priced and looked pretty cool from his picture.

We took Liam and Claire to go look at this puppy without giving away that we were thinking about getting a dog. We made up some story that our “friends” dog had puppies and we just want to go say “hi” to them. This dog was eleven weeks old and already forty pounds; about the same size as Liam. He had a cream colored coat and the start of a full beard hanging off his jowls. He walked right up to Liam and began licking his face (probably because Liam had food on his face. Liam always has food on his face). Liam just started laughing and thoroughly enjoying the tongue bath the dog was giving him. We stayed for about twenty minutes. The kids played with the puppy while Angie and I quietly discussed what to do.
“He’s pretty big for a puppy.” She said
“Yeah but look. He and Liam love each other.” I said.
“But he’s already forty pounds.”
“Well Liam will grow too. Besides, look at them.”
Angie reluctantly agreed that this was the dog for Liam. The owner agreed to hold the dog for us until Liam’s birthday when we would present it to him.

On Liam’s birthday all his friends were there. Liam’s friends at the time were all grownups and they were all the therapists who worked with him. These were the people with which he had true bonds and who completely accepted Liam without judgment and many of whom are still close to Liam today. He was ecstatic to have them all there and understood that this was his special day. I had the dog hidden in the basement while the party was going on up stairs. The plan was for me to bring up the dog at just the right moment and present it to him. But the dog let out one big bark and Liam immediately lit up and let out a great big “Whooooooooohoooo!” and started jumping up and down. He could not contain himself. I brought the dog up and Liam just got louder and more boisterous. He would run up to the dog and put his hands on his back and run away and come back and do it again. I thought the dog was going to freak out but the dog was loving it. He was as excited as Liam and was not at all shied by all the commotion. This lasted about fifteen minutes until Liam was able to contain himself enough to let the dog begin licking gluten free cake off his face.

We named the dog Chester after my late grandfather. Chester fit right in with the kids, especially Liam. I say that because Chester and Liam turned out to be almost exactly alike. They are both constantly getting into things, they are both constantly dirty, they both love to play with and in water, they are both hyperactive, they both chew on almost anything, and they are both constantly under foot. In addition to those traits, Chester is not a non-shedder. In fact he sheds like a son of a bitch…literally. It turns out that the non-shedding trait is not a guarantee with the Labra…Poodle/Lab. Also, Chester grew to be eighty-five pounds; a reasonably sized dog in my book, but as stated earlier, an unreasonable size for any dog in Angie’s book.

So, did we accomplish what we thought with Chester? Mostly. I wouldn’t say Liam and Chester are best buddies although Chester tries pretty hard. He is great with both of the kids and they can do anything to him and he just loves the attention. I would say that Liam and Chester have formed a more subtle bond. I remember one summer afternoon looking out the window and seeing Chester lying on the back lawn with Liam lying on his back using Chester as a pillow while looking up at the sky. That was a perfect picture for me. Another time Liam was really upset and collapsed crying on the kitchen floor and Chester came up to Liam and curled his whole body around him, and it really calmed Liam down. When Liam gets upset sometimes he will hit or throw things. Chester gets hit a lot when this happens and he just stands there and takes it. At first I was thinking “Are you stupid? Why don’t you get out of the way?” but after a while I realized that when Liam is upset Chester is always there or he appears there and Liam hits him and Chester lets him. It doesn’t hurt Chester and it got me thinking that maybe Chester can really sense what Liam needs at the time and if Liam needs to hit something Chester is there for him. Maybe I read too much into it. I do believe Chester would do anything to protect Liam, and Claire, and Angie, and me. I also believe that despite the mess and the destruction and the mess and the hyperactivity and the mess, He is a good boy and he makes our lives far richer…and so does Chester.

"We need Dave"

2009-05-28T21:25:00.000-07:00

My Jeep wouldn't start. "dammit" I thought. "How are we going to do it with one car until I can get it fixed?" I needed my car for work and Angie needed the other one to do whatever it is she does during the day (just kidding honey). We couldn't afford to get the jeep fixed right now. When you have a kid with special needs, the out of pocket expenses force you to live paycheck to paycheck... unless you're Oprah of course. So we decided to see how it would work with one car for a while.

"A while" lasted one day when I said, "screw this. I'll fix it myself." I know a little about fixing cars but it had been a while since I'd been under the hood because "under the hood" usually lead to "under the car" and I hate being under the car, especially in February outside. Well I do have a 3 car garage but to use any one area for a car meant that I would have to rent the largest size dumpster there is and clear out eight years of accumulated garage crap to make room for it. I didn't have that kind of time.

Whenever I have to fix something around the house, be it a vehicle, furnace, drawer, etc., Liam is always right there with me. If he sees the tool belt or hears the words "mow" and "lawn" he immediately realizes that this is the pinnacle of his day. He simply can't get enough of this guy stuff, which makes me so proud that I almost forget that his favorite color is pink.

When I grabbed the tools and opened the hood, Liam climbed up on the bumper to peer in with me. He had a very serious look on his face like he knew exactly what the problem was and how to fix it. If only it were true. "I wonder if it's the starter,” I said.
"Starter." said Liam. Liam is not conversational but he likes to use the words he hears when he can, and "starter" is an easy word for him to say.
"I should call Dave." I said
"Dave" said Liam.

Dave is a good friend of mine whose knowledge of car repair far surpasses mine. After answering a few of Dave's diagnostic questions over the phone, Dave said "You know, I'm just gonna come over there." This is what I was hoping for. Dave only has one tween daughter and a wife who loves him enough to not care what he does with his day (just kidding honey), so he can just pick up and go at a moment's notice...Ahhh freedom; just another word for let's go fix Gary's Jeep.

Dave arrived and in no time he, Liam, and I were putting our heads together. I was holding the socket set, Dave was holding a box end wrench and Liam somehow snuck the hammer from the garage and started whacking the battery with it and saying in a calm and sure voice "starter". By the look on his face it seemed that he was positive this would fix it. I traded Liam a rag for his hammer and he decided that polishing the fender was a better idea.

After Googling symptoms, we had a list of possible interventions. The three of us headed to the auto parts store to buy parts for the three cheapest ways to fix the problem. "Part store" Liam repeated the whole way there. Liam loves auto parts stores, hardware stores, Home Depot, anywhere there are tools or equipment. When we got to the parts store he began to jump around with giddy excitement, whooping and flapping his hands. This always gets looks from passers by that range from puzzled amusement to "What's his problem?" but Liam doesn't care and if he doesn't why should I?

We spent the rest of the day trying the agreed upon fixes and in the end the Jeep still wouldn't start. That meant that tomorrow I would need to try a few other more expensive and labor-intensive interventions. I paid Dave in his usual fee of "drinking some beers with me" thanked him and sent him on his way.

The next morning Liam got me up early. "Fix the truck?" he said.
"Yes, we will fix the truck today." I said
"Dave?"
"No. Just you and me today, buddy."
"Fix the truck."
"Yes, but I need coffee first."
"Coffee"
I was not looking forward to it this day because today involved being under the car. It was cold and wet outside but even if I was spending more money than I wanted to, it was still far less than taking it in to the shop.

Liam and I went back out to the Jeep and opened the hood. We both peered in in a moment of anticipatory silence. Then Liam said, "We need Dave."
"No. We don't need Dave Today." I said.
"We need Dave."
"No buddy, we can do this." I was trying to convince myself as much as Liam.
"Do this." He said.
"That's right man. We can do this."
"Do this."
"Yes, let's do this."
"We need Dave."

The next few excruciatingly frustrating hours were spent with me under the car in impossibly tight positions, bloodying my knuckles, and getting all manner of undercarriage debris in my eyes, while Liam stood on the sidewalk beside the car saying "We need Dave" and "fixing" something else on the Jeep with whatever tool I wasn't using.

In the end, I got the Jeep running again and I did a little victory dance with Liam on the sidewalk saying, "See? We don't need Dave."
"No Dave" Said Liam.

The next day when I came home from work, Liam's therapist asked about what Liam's weekend was like with an amused and concerned look on her face.
"Liam and I fixed the Jeep all weekend." I said.
"Oh" She said. "That might explain why he was saying 'fuck' today."
I don't remember saying that word when I was under the car but I am sure I must have in my frustration zone while I was racking my knuckles and banging my head on the undercarriage.
"And the funny thing is he was using it totally appropriately." She said. "When he dropped his cup or didn't get his way he would just say 'fuck'."
"Well" I said. "I guess that's a good thing right, that he knows how and when to use it. It does come in handy at times."

The next weekend Liam woke me up early again.
"Fix the truck?" He said.
"No buddy, not today. We already fixed it."
"Fuck."