Back on the medical front, Liam continued to struggle with weight gain, frequent illness, strabismus, and now had developed severe diarrhea. He would have diarrhea after anything he ate (which wasn’t much) and it often contained mucous and undigested food. It was foul. It could happen anywhere, anytime and we always had to carry extra clothing with us because it could explode out the top and legs of his diaper, making a huge, disgusting mess. We had switched from seeing the nurse practitioner to the pediatrician who had last consulted on Liam’s ridge at 9 months, as we believed that he recognized the problem and perhaps was more knowledgeable. He was the first doctor to bring up the possibility of Liam having an inborn error of metabolism. This meant that Liam’s body might not be able to properly break down and utilize food, resulting in him not making or absorbing vital nutrients. The doctor ran some tests. He told me they would be looking at Liam’s amino acids. “Amino what’s?” I said. He went on to talk some gobbeldygook about amino acids being proteins that are the building blocks of life. I still had no idea what he meant but was fully supportive of more testing. The results came back not quite normal, but not specifically indicative of any known metabolic disorder. Of course this was the case. Another anomaly. Great.
At meal times, if Liam ate anything, he would often end up staring off into space. Well, not space exactly. It seemed as if he was staring at something very specific, just something that we could not see. He would stare very intently and laugh and laugh. We would hold our hand up in front of his eyes and he would reach up and push our hand out of the way or look around it, staring fixedly at this unknown thing. We used to say, “Liam sees angles.” We thought this was cute. He was so quiet and serious as an older baby and, with this behavior, we tried to find some meaning in it – he was a little Buddha, a spiritual being. After I began my education in autism I came to understand that this behavior was more likely an indication that Liam was hallucinating. It is theorized that some children with autism have an inability to properly digest the proteins in wheat (gluten) and dairy (casein). The proteins are only broken down partially and become similar in chemical structure to morphine. I also learned how chronic infections such as ear infections are common in these same children with autism and that, due to these infections and subsequent overuse of antibiotics, these children develop yeast infections and an overgrowth of bad (not beneficial) bacteria. The antibiotics not only kill off the offending bacteria responsible for the infection, but also the beneficial good bacteria and this results in an imbalance of the gut flora so essential for healthy digestion and overall gut health. The improperly digested proteins in combination with the bacteria and yeast overgrowth can damage the intestinal lining making it porous. A healthy intestinal track only allows certain essential nutrients to enter the blood stream, keeping everything else in the intestines. When the intestines become damaged, things that should not enter the blood stream can leak out. This is known as “leaky gut syndrome.” In the case of improperly digested gluten and casein, as it is similar in structure to morphine which can permeate the blood brain barrier, so too do these proteins, which is why Liam would hallucinate after eating. Reading about this was a shock. This behavior that I found to be cute, spiritual like, was actually a serious problem and something that could be hurting Liam’s brain. It certainly was not helping Liam to connect with the real world or pay attention to things that are relevant. No wonder he could stare at the lines created by repetitively opening and closing doors and drawers with such focus and glee for hours, he was tripping. With Liam’s failure to thrive, extremely limited (almost non-existent) diet, and failing health, we had no qualms about trying the Gluten Free Casein Free (GFCF) diet. I couldn’t implement it fast enough. Within three days of no dairy products, Liam was suddenly free of his respiratory illness. No more coughing, runny nose, elevated temperatures, or ear infections (ear infections did return at age 4 – more on that later). It was amazing. Gluten takes longer (about 3 months) to get out of your system. With the removal of gluten we did see an end to the baby Buddha behavior and he seemed more “with-it.” He has remained GFCF ever since.
We began seeing a naturopathic physician who was well known in the community for utilizing the DAN! Protocol with autistic children. She helped us navigate further treatments for Liam such as vitamin and mineral and fatty acid supplementation, all aimed at restoring the imbalances in his body and helping to repair his damaged gut. We found a super supportive nutritionist who formulated a GFCF formula replacement for Liam that was a combination of fortified rice milk, gluten free rice protein powder, brown rice syrup, and flax oil. We would mix up a big batch of this for Liam every day and to our amazement he would gulp it down. Unbelievable. Liam still wasn’t eating solid food well so we mixed up a big bowl of rice cereal with pureed meat, vegetables, and fruit and threw in all of his supplements (vitamins, minerals, cod liver oil, etc.), gave it a whirl, and fed it to him with a spoon. We called it glop. Liam loved glop. It makes me chuckle to think back to those days and how Gary and I would ask one another “Did you give Liam his glop yet?” We didn’t want to overdose him on supplements by accidentally giving it to him twice. Liam did enjoy gluten free waffles. Gary invented the “waffle pizza” which was ground meats and veggies mixed with dairy free butter substitute and spread on a waffle. If we cut the waffle pizza up in pieces and presented it to Liam “spread” side down, he would eat it without objection. It always seemed strange to me how Liam would eat these things happily but Popsicles, juice, Cheerios, pasta, bananas, candy were responded to as if they were poison. We got really creative over time it became sort of an obsession for me and I spent many hours in the kitchen whipping up various ways to sneak calories into Liam. We were happy to finally have some support and to finally get some nutrition into him. He made it back onto the weight chart, only to the tenth percentile, but he was on it and that was confirmation that we were on the right track.
Solving Liam’s gastrointestinal issues proved to be much more difficult. No matter what we did, Liam would still have explosive diarrhea, often multiple times per day. Changing his diaper was always a major chore and, in retrospect, we should have bought stock in baby wipes because we sure went through them like wildfire. We requested that Liam’s pediatrician test his antibodies to gluten to rule out the possibility of Celiac Disease which can produce the symptoms that Liam was experiencing. I didn’t really feel that Liam had Celiac because the treatment was removing gluten from the diet, which we had already done, and Liam still had major diarrhea. The test results were interesting, but not likely suggestive of Celiac. I won’t get too technical by explaining the difference between IGG and IGA antibodies, but this test showed that Liam’s body was producing sky high IGG antibodies to gluten, which is not normal. His IGA antibodies were low (normal). In Celiac, it is usually the IGA antibodies that are elevated. Nonetheless, we were referred to a gastroenterologist for further evaluation. We were not able to get an appointment with this specialist for six months, so we had to wait. Finally, the big day arrived. We were so hoping to get some help for Liam, some kind of treatment for his diarrhea and poor growth.
This appointment was a major disaster and the beginning of a deepening understanding of the stigma that surrounds children with autism and their parents within the medical community, especially when it comes to the concept that “leaky gut syndrome” and the speculation swirling around childhood immunizations, in particular MMR, may be implicated in this condition. Being unaware of how we might be viewed, I openly shared with her our observations, theories and interventions thus far. In response to our story, her demeanor suggested that she was judging us to be parents who were being “taken” by vulturous charlatans who preyed upon desperate parents seeking help for their un-helpable children by offering unsubstantiated theories and treatment. She didn’t really seem curious about Liam or our experiences. In addition to consistently calling him by the wrong name, referring to him as a “she”, and talking about another patient with one of the nurses in front of us (major HIPPA violation) she had already made up her mind that there was no reason to do any testing and that we should put Liam back on gluten. She did say that if we wanted to test him for Celiac we would need to put him back on gluten for three months and then do a colonoscopy to test for Celiac. She couldn’t really say if she felt there was a chance he did have Celiac (which would be important to know). I did know that I wasn’t about to put Liam back on gluten because he was doing so much better off of it – he was actually eating, had gained some weight, was no longer hallucinating at mealtime. Part of me was a little mad that we weren’t seen in a timelier manner because at the time we were referred to this specialist we had just taken Liam off of gluten. We could have done the test for Celiac at that point rather than risking feeding him gluten again. I didn’t trust this doctors interest in Liam anyway, and I certainly wasn’t going to go back to a gluten containing diet under her suggestion. I may have been more persuaded if I felt that she was interested in Liam’s case and truly wanting to partner with us to help our son. She also bluntly stated “Well, if his height to weight ration gets any worse we’ll have to tube feed him.” “Tube feed him! Why?” I didn’t understand her willingness to stick a tube down his nose but resistance to actually investigating the source of his diarrhea. No way was I going to jump to tube feeding as an intervention, not until all of my efforts to understand what was wrong and remedy the underlying problem had failed. Her final “recommendation” was to enter Liam into her research study for failure to thrive. This study was looking at the hunger center in the brain and how it may or may not be implicated in failure to thrive. She admitted that there would be little or no benefit to Liam himself by being part of this study, but that his contribution may add to medicine’s understanding of failure to thrive. Being part of this study meant hospitalizing Liam 3 times throughout the year for several days. No thank you. I felt that Liam was hungry and that his poor growth and diarrhea was much better explained by the autism literature than something to do with hunger. I certainly wasn’t going to put Liam through any evaluations and separations from home for this woman and her interests. We left, never to return and I’ve never regretted our decision.
To be continued
Monday, August 24, 2009
Tuesday, August 18, 2009
Diggers And Toast
I wake up at about 5:15 every morning on workdays. I like to capture at least a little morning time to myself, so the trick is to get up before Liam wakes up. It usually doesn’t happen. Liam can be in a deep sleep but he seems to have this extra sense. No matter how quietly I get up and no matter how seemingly dead to the world he is, he springs right up with one thing and one thing only on his mind:
Diggers.
I made the mistake once of showing him some You Tube videos of construction equipment and now it has become an obsession. He can sit and watch diggers, bulldozers, cranes, dump trucks, etc. for as long as we let him. And if we don’t let him, it sounds something like this: “Diggers? Diggers? Diggers? Diggers? I want diggers. Diggers? Diggers? Diggers? Hot dog? I want diggers. Diggers? Diggers? Diggers? Diggers? Diggers? Diggers?”
“Oh, you want diggers.”
“Yeah.”
So when Liam throws this digger mantra at his pre-coffee dad, what starts as an extreme annoyance quickly becomes an opportunity to grab a little “me” time as I pull out the laptop and get him set up with the You Tube diggers. Once he is in front of his diggers with an eager grin on his face I can grab at least one cup of coffee before my day starts.
The other thing that is important for Liam in the morning is that he eats fairly soon after he wakes up. If we wait too long to feed him, even if he doesn’t act hungry, he can get extremely agitated. If he is wanting his diggers he will not eat, but if he is watching his diggers he will gladly eat while he’s watching. I usually make him some gluten free toast (his system can’t tolerate wheat or dairy) with peanut butter and jelly on it. This is how we start the day; Liam watching his diggers eating peanut butter and jelly toast and me slowly waking up with my coffee to the sound of working diggers on You Tube, delighted giggles, and incoherent comments about diggers digging.
As much as this makes for an easier morning, there are a few drawbacks. Liam can’t keep his hands off the computer while he is watching and he just starts pushing buttons that mess up the computer in ways I don’t understand, so I sometimes have to spend some time trying to undo whatever it is he just did while he is screaming “DIGGERS?!” repeatedly in my ear. It is hard to disengage him from the digger videos but usually with a little advanced warning such as “One more and then all done.” We can get on with our day. There is always peanut butter and jelly on my keyboard.
After coffee I can usually grab a quick shower and get ready to walk Chester while Liam is still watching diggers and eating. The next big task is getting Angie up so I can get the dog out the door. She is not a good getter upper. This I don’t understand. I always tell her “It’s like taking off a band aid. Do it quick and painless and once you’re up it’s great.” She clearly does not see the wisdom in my method as she makes the process as slow and painful as possible.
So walking Chester is another way of grabbing a little more of the morning for myself. In the winter it is still dark when I’m out and it is a really weird but strangely satisfying feeling to be out and about at this time.
I get about 30 minutes of dog walking and then I come back to my favorite scene: The computer is off, Angie is on the couch trying to drink coffee with Liam, jelly faced, snuggled up against her giggling softly, putting her hands on his face, and loving every minute of this precious snuggle time with his mommy. It is clear that mommy time far outweighs any draw the diggers may have had just minutes ago. Although Liam will follow me around the house all day wanting to do whatever I’m doing, I do not have the kind of snuggle appeal that Angie has. She can sit still with him and he can sit still with her and they can enjoy each other that way. If it’s Liam and me he always wants to be doing something active with me (if the diggers aren’t on), not sitting still. I don’t mind this for the most part. I like that he sees us differently. It is just more evidence that he is distinctively engaged with the world and understands the different nature of different relationships, whether the relationship is with Mommy, Daddy, Claire, Chester, or diggers.
Diggers.
I made the mistake once of showing him some You Tube videos of construction equipment and now it has become an obsession. He can sit and watch diggers, bulldozers, cranes, dump trucks, etc. for as long as we let him. And if we don’t let him, it sounds something like this: “Diggers? Diggers? Diggers? Diggers? I want diggers. Diggers? Diggers? Diggers? Hot dog? I want diggers. Diggers? Diggers? Diggers? Diggers? Diggers? Diggers?”
“Oh, you want diggers.”
“Yeah.”
So when Liam throws this digger mantra at his pre-coffee dad, what starts as an extreme annoyance quickly becomes an opportunity to grab a little “me” time as I pull out the laptop and get him set up with the You Tube diggers. Once he is in front of his diggers with an eager grin on his face I can grab at least one cup of coffee before my day starts.
The other thing that is important for Liam in the morning is that he eats fairly soon after he wakes up. If we wait too long to feed him, even if he doesn’t act hungry, he can get extremely agitated. If he is wanting his diggers he will not eat, but if he is watching his diggers he will gladly eat while he’s watching. I usually make him some gluten free toast (his system can’t tolerate wheat or dairy) with peanut butter and jelly on it. This is how we start the day; Liam watching his diggers eating peanut butter and jelly toast and me slowly waking up with my coffee to the sound of working diggers on You Tube, delighted giggles, and incoherent comments about diggers digging.
As much as this makes for an easier morning, there are a few drawbacks. Liam can’t keep his hands off the computer while he is watching and he just starts pushing buttons that mess up the computer in ways I don’t understand, so I sometimes have to spend some time trying to undo whatever it is he just did while he is screaming “DIGGERS?!” repeatedly in my ear. It is hard to disengage him from the digger videos but usually with a little advanced warning such as “One more and then all done.” We can get on with our day. There is always peanut butter and jelly on my keyboard.
After coffee I can usually grab a quick shower and get ready to walk Chester while Liam is still watching diggers and eating. The next big task is getting Angie up so I can get the dog out the door. She is not a good getter upper. This I don’t understand. I always tell her “It’s like taking off a band aid. Do it quick and painless and once you’re up it’s great.” She clearly does not see the wisdom in my method as she makes the process as slow and painful as possible.
So walking Chester is another way of grabbing a little more of the morning for myself. In the winter it is still dark when I’m out and it is a really weird but strangely satisfying feeling to be out and about at this time.
I get about 30 minutes of dog walking and then I come back to my favorite scene: The computer is off, Angie is on the couch trying to drink coffee with Liam, jelly faced, snuggled up against her giggling softly, putting her hands on his face, and loving every minute of this precious snuggle time with his mommy. It is clear that mommy time far outweighs any draw the diggers may have had just minutes ago. Although Liam will follow me around the house all day wanting to do whatever I’m doing, I do not have the kind of snuggle appeal that Angie has. She can sit still with him and he can sit still with her and they can enjoy each other that way. If it’s Liam and me he always wants to be doing something active with me (if the diggers aren’t on), not sitting still. I don’t mind this for the most part. I like that he sees us differently. It is just more evidence that he is distinctively engaged with the world and understands the different nature of different relationships, whether the relationship is with Mommy, Daddy, Claire, Chester, or diggers.
Tuesday, July 14, 2009
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.
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.
Saturday, July 11, 2009
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 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.
Sunday, July 5, 2009
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
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
Tuesday, June 30, 2009
The Nature of Things
Liam is completely unencumbered by thoughts of what other people might think about him. This fact offers him a special kind of freedom that most of us don’t get to enjoy. He acts how he wants when he wants, and there is no social norm that is going to get in his way. If he wants to start dancing in the middle of a restaurant because he likes the music, he will do it until we make him sit down. He will stand up on his chair, he will shriek loudly if he is mad or swipe a basket of french fries off the table, he will crawl under the table, he will let out a giant whoop when he’s excited and he will hit a complete stranger if they happen to be in the way when he is mad. He will stop these behaviors, not because he is making a spectacle of himself and he is suddenly feeling self conscious, but because we tell him to.
So, due to the fact that social norms are not on Liam’s radar, it makes for an interesting study in the old nature vs. nurture debate. The things Liam is into are not a product of his environment. The only thing that influences his likes and dislikes is his own perception of them.
Liam is a boy who loves trucks, tools, pink, construction equipment, trains, fire trucks, girl clothes, playing in water, pumpkins, fires, Popsicles, cooking, baking, riding his bike, the beach, dirt, sand, wearing his sister’s pink light up shoes, escalators, and elevators.
These are mostly boy things and Liam seems to be naturally drawn toward the masculine. But he is equally unapologetic about his affinity for feminine things. Liam takes a circus arts class and one day he chose to wear Claire’s pink satin shorts and her pink Ugg boots to the class. Laura, his therapist let him (and, I suspect, encouraged him to) wear these items because he just really wanted to. I picked him up from this class and when I got there is when I saw what he had on. Laura and I joked around about it, but most important of all, Liam was just so proud of what he was wearing. In his mind he wasn’t making a statement or bucking a trend. He just saw something he felt was novel and interesting to him and he felt special wearing it without any perception that pink is a girl color. Liam and I walked hand in hand from the studio down a busy Portland street to the car. At first I didn’t even realize that he was turning peoples’ heads but when I saw that people were staring at him, I surprised myself by not being self-conscious. In fact it was at that moment that I realized that Liam was helping me not care what anybody else thinks, just like he doesn’t care. I was proud of him (and a little proud of me).
Liam loves other kids and is always interested in what they are doing. He is not socially adept, partly because his lacking language skills hold him back and partly because he is just really unaware of the subtleties of human interaction. At a playground if Liam sees a group of kids playing basketball and he gets interested in it, he will just run into the middle of the game as if to say “Here I am. Can I play?” Even though he doesn’t have the slightest idea of how to play basketball. Interestingly, the other kids are usually too puzzled by this to be hostile toward him.
We all went to a potluck at Claire’s school for her last day of kindergarten. There were kindergarteners all around who were all more socially advanced than Liam. He was having a good time on the playground with the other kids, climbing trees and playing in the dirt. Then he noticed a group of older kids, first grade boys in another area of the playground. He grabbed my hand and started pulling me toward them saying “Friends? Friends?” I suddenly became aware that he was aware that this was more of a peer group for him. He is the one who decided this. No one had ever taught him to play with kids his own age and gender. I said “You can go over there if you want.” He walked over to the group of boys and started talking. I stood back and watched. When Liam talks, most people can’t really understand him. He says words and sentences but it doesn’t come out as normal speech. The boys looked at him puzzled at first and tried to ask him some questions but it was quickly clear to them that Liam was a little different and had some challenges, and they were cautiously curious about him. This was cut short as the boys were called to line up to go back in to class. To the boys’ amusement, Liam fell right in line with them. I went over to get him. “Time to say goodbye to your friends, buddy.” I said.
“Bye friends.” Said Liam.
So Liam’s lack of awareness of social norms got me to thinking, “Is this a deficit or a gift?” He clearly has limits in how he can interact with people, but these limits allow him to make his presence and desires known in ways that may be intimidating for most people. If I were to go to a party where I didn’t know anyone but had a strong desire to interact with the people there, I couldn’t just interject myself right into the middle of a conversation (at least not before several beers). I would try more subtle, learned, socially acceptable ways. Since Liam doesn’t have those filters, he can just insert himself into a situation without anticipating rejection. He just assumes that everyone wants to play with him. If he doesn’t get a desired response from someone, he will move on. He doesn’t take it personally and it doesn’t deter him from trying again another time. There are people who have embraced him and others who could not deal with him. For us it would be a gamble, but for Liam there is no ego attached to it.
This has also made me wonder about Liam’s future. We had a Sonrise program instructor come for a few days to do some training with us for Liam’s program. Her name was Suzanne and she was a very warm, open person. After the training I was driving her to the airport and we got o talking. I said, “You know, I really worry about Liam’s future.”
“In what way?” She said.
“Well, there is a chance that he may always have the challenges he has now, I hope not and I think not, but if he does, he is the perfect victim and we won’t always be there to protect him.”
“I would challenge you not to think that way. It’s dangerous.”
I thought, “What? Isn’t it more dangerous not to be realistic?” “What do you mean?” I said.
“All thoughts actually have energy. If you keep negative thoughts, that energy can make those negative thoughts come true. The same is true with positive thoughts. When you think of Liam you have to realize that he has already shown that he is perfectly capable of taking care of himself.”
“I’m not sure I follow.”
“Look at the people Liam has brought into his life. He has known what he needed from the day he was born, from before he was born, and he has you and Angie and Claire and all these wonderful people in his life here to help him. Do you think that was an accident? I believe that Liam will always bring the people into his life that he needs whether he is disabled or not. We all do when we are open to it. Liam couldn’t be more open to it.”
I still think of those words any time I am feeling anxiety about Liam’s future and it really helps set my mind at ease. It also makes me think about human nature in general and how ironic it is that it is human nature to progress, and invent, and innovate, and expand our societies to the point where we create artificial barriers to the very nature that compels us to create them. Liam’s disengagement from those barriers is the thing that makes him free to be a human in purest form. It’s not always easy for him or for us, but I have to envy him just a little.
So, due to the fact that social norms are not on Liam’s radar, it makes for an interesting study in the old nature vs. nurture debate. The things Liam is into are not a product of his environment. The only thing that influences his likes and dislikes is his own perception of them.
Liam is a boy who loves trucks, tools, pink, construction equipment, trains, fire trucks, girl clothes, playing in water, pumpkins, fires, Popsicles, cooking, baking, riding his bike, the beach, dirt, sand, wearing his sister’s pink light up shoes, escalators, and elevators.
These are mostly boy things and Liam seems to be naturally drawn toward the masculine. But he is equally unapologetic about his affinity for feminine things. Liam takes a circus arts class and one day he chose to wear Claire’s pink satin shorts and her pink Ugg boots to the class. Laura, his therapist let him (and, I suspect, encouraged him to) wear these items because he just really wanted to. I picked him up from this class and when I got there is when I saw what he had on. Laura and I joked around about it, but most important of all, Liam was just so proud of what he was wearing. In his mind he wasn’t making a statement or bucking a trend. He just saw something he felt was novel and interesting to him and he felt special wearing it without any perception that pink is a girl color. Liam and I walked hand in hand from the studio down a busy Portland street to the car. At first I didn’t even realize that he was turning peoples’ heads but when I saw that people were staring at him, I surprised myself by not being self-conscious. In fact it was at that moment that I realized that Liam was helping me not care what anybody else thinks, just like he doesn’t care. I was proud of him (and a little proud of me).
Liam loves other kids and is always interested in what they are doing. He is not socially adept, partly because his lacking language skills hold him back and partly because he is just really unaware of the subtleties of human interaction. At a playground if Liam sees a group of kids playing basketball and he gets interested in it, he will just run into the middle of the game as if to say “Here I am. Can I play?” Even though he doesn’t have the slightest idea of how to play basketball. Interestingly, the other kids are usually too puzzled by this to be hostile toward him.
We all went to a potluck at Claire’s school for her last day of kindergarten. There were kindergarteners all around who were all more socially advanced than Liam. He was having a good time on the playground with the other kids, climbing trees and playing in the dirt. Then he noticed a group of older kids, first grade boys in another area of the playground. He grabbed my hand and started pulling me toward them saying “Friends? Friends?” I suddenly became aware that he was aware that this was more of a peer group for him. He is the one who decided this. No one had ever taught him to play with kids his own age and gender. I said “You can go over there if you want.” He walked over to the group of boys and started talking. I stood back and watched. When Liam talks, most people can’t really understand him. He says words and sentences but it doesn’t come out as normal speech. The boys looked at him puzzled at first and tried to ask him some questions but it was quickly clear to them that Liam was a little different and had some challenges, and they were cautiously curious about him. This was cut short as the boys were called to line up to go back in to class. To the boys’ amusement, Liam fell right in line with them. I went over to get him. “Time to say goodbye to your friends, buddy.” I said.
“Bye friends.” Said Liam.
So Liam’s lack of awareness of social norms got me to thinking, “Is this a deficit or a gift?” He clearly has limits in how he can interact with people, but these limits allow him to make his presence and desires known in ways that may be intimidating for most people. If I were to go to a party where I didn’t know anyone but had a strong desire to interact with the people there, I couldn’t just interject myself right into the middle of a conversation (at least not before several beers). I would try more subtle, learned, socially acceptable ways. Since Liam doesn’t have those filters, he can just insert himself into a situation without anticipating rejection. He just assumes that everyone wants to play with him. If he doesn’t get a desired response from someone, he will move on. He doesn’t take it personally and it doesn’t deter him from trying again another time. There are people who have embraced him and others who could not deal with him. For us it would be a gamble, but for Liam there is no ego attached to it.
This has also made me wonder about Liam’s future. We had a Sonrise program instructor come for a few days to do some training with us for Liam’s program. Her name was Suzanne and she was a very warm, open person. After the training I was driving her to the airport and we got o talking. I said, “You know, I really worry about Liam’s future.”
“In what way?” She said.
“Well, there is a chance that he may always have the challenges he has now, I hope not and I think not, but if he does, he is the perfect victim and we won’t always be there to protect him.”
“I would challenge you not to think that way. It’s dangerous.”
I thought, “What? Isn’t it more dangerous not to be realistic?” “What do you mean?” I said.
“All thoughts actually have energy. If you keep negative thoughts, that energy can make those negative thoughts come true. The same is true with positive thoughts. When you think of Liam you have to realize that he has already shown that he is perfectly capable of taking care of himself.”
“I’m not sure I follow.”
“Look at the people Liam has brought into his life. He has known what he needed from the day he was born, from before he was born, and he has you and Angie and Claire and all these wonderful people in his life here to help him. Do you think that was an accident? I believe that Liam will always bring the people into his life that he needs whether he is disabled or not. We all do when we are open to it. Liam couldn’t be more open to it.”
I still think of those words any time I am feeling anxiety about Liam’s future and it really helps set my mind at ease. It also makes me think about human nature in general and how ironic it is that it is human nature to progress, and invent, and innovate, and expand our societies to the point where we create artificial barriers to the very nature that compels us to create them. Liam’s disengagement from those barriers is the thing that makes him free to be a human in purest form. It’s not always easy for him or for us, but I have to envy him just a little.
Thursday, June 25, 2009
Glut 1 deficiency-Could it be? Part 3
During the first weeks after Liam’s 12-month vaccinations, he would just sit and stare for hours. I started to notice that he would not look at me. He would actually avoid eye contact. “How could this be? When did this start? Did I just not notice this before?” He had no stranger anxiety. He didn’t seem to notice when I dropped him off at day care. He didn’t notice when I returned. It’s like I didn’t exist. I was drowning in sorrow. I couldn’t reach my precious little boy. Now I was really worried that he had autism. I didn’t really know anything about autism, except from “Rain Man.” I also remembered this little boy I once worked with who had PDD, NOS. I didn’t know what that was at the time, but I knew it had something to do with autism. This child was odd. He didn’t have friends. He was dreamy and in his own world. He would rock and pull his hair. He talked funny. He was pale and thin and sickly. He could get aggressive. I had a soft spot in my heart for him. “Was this autism? Would this be Liam? Was this why I suspected autism in Liam? Was I just paranoid because there was so much media attention paid to autism?” I went to the special needs parenting section at Barnes and Noble with the idea of reading about autism. I was so worried someone would see me and think that I had a child with autism. I felt like I had a spotlight on me. I pulled a book from the shelves, opened it up, read one sentence. “That doesn’t sound anything like Liam. Whew, thank goodness. Liam doesn’t have autism.” I went back home but deep inside I knew that one sentence from one book was not very convincing. Over time, I worked up the courage to really start investigating. I even got brave enough to take a stack of books to the café and hunker down for a night of research. I turned all of the books over and stacked them on top of one another so no one could see the titles. I felt like I was betraying Liam to have the thoughts that I had. I didn’t want any attention from anyone about this topic. I didn’t want to talk about it. I couldn’t even bring myself to speak the word out loud. I remember one evening during my Barnes and Noble research a “nosey” mom noticed what I was reading and said so casually “do you have I child with autism? I do. He’s six.” How dare she. How could she just say that out loud in front of everyone! “No” I said. I’m sure I gave off a very strong vibe saying, “Leave me alone,” and she did.
I read books about dietary intervention and how children with autism had gastrointestinal problems, eczema, food allergies, food cravings, and on and on and on. I didn’t find anything about failure to thrive, trigonocephaly, or gross motor delays. Most of my reading indicated that children with autism develop motor skills on time, sometimes early. They were supposed to be colicky and not like physical contact. None of this seemed to describe Liam. He was snuggly and quiet. I’ve since learned that there is a type of child with autism who is described as the “too easy baby,” who is just not quite as connected and drifts off little by little, who does lag behind in motor skills. But the craniosynostosis and growth problems, that seemed unique to Liam. I read one book in particular called “The Special Needs Child” by Stanley Greenspan, a well know child psychiatrist that changed my life forever. This book described all sorts of things that indicate autism in very young children, things that may get overlooked until a child is older and really stands out from his peers. All of these things described Liam to a T. He didn’t indicate his wants with any form of communication. He didn’t point, didn’t gesture. He didn’t play reciprocal games like patty-cake or peek-a-boo. He didn’t wave bye-bye. He didn’t imitate or pantomime things he saw me doing. He never checked in with me. If we went to the pediatrician’s office he would crawl away from me to explore the little cube that every office has with all the wooden beads you can push around on wires. He loved that thing. He never looked back at me to see if I was there, if I was watching. I could have left and he wouldn’t have cared. All around me I started to notice other babies doing these things. There was a baby at day care standing at the mirror pretending to brush his hair. Another one was pretending to talk on the phone. They seemed so advanced. When I would enter the day care all the babies would come over to me and say “hi”. They would grin and look up at me like “aren’t I cute?” Where was Liam? Sitting in the middle of the room fixated on some random aspect of an object like the fold in a tumbling matt that was laid out on the floor. He didn’t notice that I had entered the room. I would watch a friend of mine who has a son six weeks older than Liam playing with her child. I remember this one day when they were playing a peek-a-boo game. He would grin and look at her and laugh over and over and over again. I thought to myself “That’s the problem! I don’t play with Liam. I just need to start doing that.” I went on a playing crusade, trying to engage Liam in these games. “Liam, where’s Mommy…where’s Mommy…” Nothing. No response. I blamed myself. “I don’t even know how to play with a child. I didn’t teach him these vital skills. I must have neglected him somehow.” But part of me knew that you’d have to lock a kid in the closet to deprive their development to the point that they would be content to sit and show no interest in their parent. I certainly had never locked Liam in a closet. I loved him more than anything. It was all so devastating. So confusing.
Liam started his early intervention services at about 13 months. He and I met weekly with a group of other babies and their moms or dads along with a group of specialists. I didn’t really see the purpose of this; Liam wasn’t getting much 1:1 attention. I would play with him and there was a little circle time where we would sing and play musical instruments. It didn’t seem like anything I wasn’t already doing at home really, other than the part about being with a group of people. Liam didn’t seem to care about the other kids; a group didn’t seem relevant for him. I didn’t know where this would go, or if there was more specific help coming. I was getting anxious that time was slipping away and Liam was feeling out of reach.
Reading “The Special Needs Child” was a devastating blow because I knew that my fears about Liam were correct. It was also inspiring because it was the first time I had ever heard that Autism could be treated, that some children could recover fully and lead normal lives. I’d never heard that before. I thought of autism as a death sentence, permanent, a lost child forever that would never know me, a child that I would never really know. Even though this book confirmed my suspicions about Liam, it also gave me a reason to speak up and start accessing help. Time was of the essence. Early and intensive treatment was key. I read all sorts of books about various treatments for autism and got started right away making a plan to get these services for him. I read about Applied Behavioral Analysis (ABA) and how this was the only “researched based” intervention for autism. I read a study from UCLA by someone named Lovaas who conducted a research study showing that nearly 50% of children who received 40 hours per week of ABA recovered and all children improved. “The Special Needs Child” talked about an intervention called “Floor Time” which it touted was essential for recovery too. It differed from ABA, which worked on specific skills through repetitive drills, in that it focused on the relationship with the child through child-centered play. I also read about dietary intervention, specifically a diet that eliminates gluten (found in wheat, barley, oats and rye) and dairy called the GFCF (gluten free, casein free) diet. I learned about DAN! Doctors and the DAN! Protocol. This was a group of doctors, some of whom have a child with autism, who specifically treat children with autism for their underlying medical conditions that are thought to be contributory to the development of this disorder. I never knew about any of these things. I was excited. Liam was only 13 months old. Most children don’t get identified until much later. We had that on our side and I wasn’t going to waste any more time. We would get all of this help for him and “save” him from autism. I called his early intervention case manger. I requested we meet to talk about Liam. She came to our house and I just flat out said, “Do you think Liam has autism?” She was surprised as, in her experience, it is usually the specialist who first raises this concern to the parent and the parent who typically needs a little convincing. I didn’t care, I wasn’t going to waste Liam’s time with services that seemed would never really help him. He needed help fast and now. “Yes, we have wondered about that” she replied. We agreed to do an autism evaluation to see if he was eligible for autism specific services. She was a great case manager and worked to make this evaluation happen fast. I really appreciated that.
Liam did qualify for autism services. I was happy. I knew in my heart that something was wrong and now we were going to get some real help. We met as a group to develop his service plan. The early intervention team for our area proposed 8 hours of 1:1 intervention in their autism program, two hours per day four days per week during the school year. “What! 8 hours per week! The research says 40 hours. Is there any research to support that 8 hours will accomplish anything?” In everything that I had read so far, intensive intervention was emphasized over and over. Children with autism do not learn by existing in this world, by observing others. They need specific intervention during almost all of their waking hours to help their brain make new, relevant connections. Liam seemed so internal, like he didn’t notice anything going on around him. I started to notice that the only things he really paid attention to were things that spun and lit up. He would stare at fans and put a flashlight right up to his eyeball. One time we were at a store and there was one of those flashing lighted signs. Liam was fixated on this. As we walked under it he almost flipped out of my arms to keep staring at it. He also repeatedly opened and closed doors. He seemed fascinated by the lines things like doors and drawers created and would cock his head and look at these lines with his peripheral vision and would laugh and giggle. This was his source of entertainment and enjoyment. He could do these things all day. He was wiring his brain for random, weird things that seemed to me to hold no purpose. He would need some serious 1:1 intervention to counteract all of this and to help him begin to take note of the “more important” things in life. Eight hours per week would not do, that was a drop in the bucket. I also counted all of the days that school was in session. This totaled less than 50% of the entire year. Unacceptable! Nonetheless, we were stuck with 8 hours. The early intervention program was not going to authorize more, this was standard and all they could do with their budgetary restrictions. They implied that I should be happy; it’s more than children with other types of disabilities receive (or so they said). I knew we could not afford to hire an attorney, which seemed the only route to possibly getting something closer to research based intervention, so I consented to this plan. We would just have to find the help elsewhere.
Our insurance company did not offer rehab services (PT, OT, Speech) for children with autism. Autism was an excluded condition! Rehab services were reserved for children who had “lost function due to medical illness or injury.” I guess they see these children as more helpable. The most infuriating thing to me at the time was, around this same time, there was a lot of media attention paid to a set a conjoined twins who were joined at the head. I think these children were from India, but were receiving medical treatment here in the United States. After surgery to separate them, the twins received something like 8 hours of rehab services a day from a team of people in the hospital. These children were maybe two years of age (you probably remember the story) and they could not walk or play, etc. They seemed more disabled than Liam. Now, I’m not saying that they didn’t deserve this treatment, but did they deserve it any more than a child with autism? I was realizing for the first time the level of discrimination that exists toward people with neurologically based disabilities. I had never realized, or probably thought about, that before. There was no insurance coverage for ABA or Floor Time, or any autism related treatment. We were on our own.
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