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.
Wednesday, August 25, 2010
Monday, May 31, 2010
Liam's NACD program
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.
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.
Tuesday, May 18, 2010
Blades of Ambiguity
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.
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.
Wednesday, May 5, 2010
Liamese
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
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
Friday, April 30, 2010
A Family Divided
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.
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.
Friday, January 22, 2010
Reflections on a Year Gone By…
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!
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!
Sunday, September 20, 2009
Who Is It That Needs Saving?
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.
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.
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