Sunday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New Developments

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

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

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

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

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

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

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

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

Liam From His Grandpa's Perspective

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

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

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

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

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



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

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

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

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

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

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

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

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

Phil Paquin, Liam’s Grandpapa