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.

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.

Glut 1 deficiency-Could it be? Part 2

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

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

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

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

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

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

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

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

To be continued




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





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




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




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

The Professionals

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

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

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

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

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

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

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

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

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

Damn you China.

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

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

Damn you Texas.

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

Damn you Dr. Willis.

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

Glut 1 deficiency-Could it be? Part 1

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

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

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

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

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

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

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

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

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

To be continued.




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




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




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




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

Liam And Claire

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

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

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

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

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

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

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

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

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

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

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

The Magic of a Puzzle

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

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

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

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

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

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

Store Trip

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

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

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

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

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

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

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

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

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

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

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