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.

To be continued.