Who Is It That Needs Saving?

In a recent blog entry I wrote about feeling a need to “save” Liam from autism. Feeling that autism would steal his soul and needing to combat this with every fiber of my being. As I wrote the words “save him” I felt a strong urge to erase them. I kept the words because they were true for the time in which I was writing about. In the early years of discovering that Liam had autism and trying to help him, I did feel that I was trying to save him. Today, I feel quite different. I don’t feel that Liam needs saving from anything. I see him as a complete and whole being who definitely has a beautiful and captivating soul. I have been contemplating why I felt that way back in the beginning and why I no longer see things quite the same. All that I can come up with is that autism was a new concept to me. Neither Gary nor I have relatives with a developmental disability. Both of us have actually lived quite “fortunate” lives in that neither of us has known any real type of hardship. We both come from intact families with healthy parents and siblings. Grandparents have lived to older ages. I grew up with strong relationships with my extended family and always knew there were large numbers of people who cared about me and would be there to help me if needed. Gary and I also grew up in financially stable homes and have never really had to struggle beyond the typical difficulties of the teenage years. Autism coming into my life was a complete unknown – something I had never really thought about and something of which I had very little real knowledge. I felt like autism had happened to Liam and I wanted it to go away – to know it was not welcome in this house. I was afraid of it because I didn’t know what to expect. I had no idea what Liam would be like and I had a lot of fear that Liam would be lost to me. The idea of a child who may never speak was a completely foreign concept to me at the time and it terrified me.

I believed with every fiber of my being that I could save Liam from this fate. I could not visualize Liam at an older age with autism. It was just something I could not picture. It’s funny to think about that because there has really been no time in Liam’s life that I have not felt anything but completely bonded to him. I have always felt a strong connection to Liam and I believe I have always understood him, just as much as I understand Claire. Sure, there are times I wish Liam could tell me if he feels sick or is sad or something, but there are lots of times when I wish I knew how Claire felt about something too. Even though she can speak fluently, I don’t always know how she is feeling either because she chooses not to tell me or she can’t explain it in words.

I used to think that it was easy to bond with Liam and know him fully because he was a baby, less complicated than he would one day be. I also felt that it was easier for me to feel more at ease with his autism because as a very young child it was much easier to protect him, to keep him from getting hurt or experience unhappiness. Most of the times when my grief would get the best of me were thinking about what would Liam experience at age 5, age 8 or older. What would it be like to have a son, a child I love fiercely, potentially not have a “friend” or play sports, or have classmates to invite to a birthday party? Grief and fear was very rarely triggered by something I was experiencing in the moment with Liam. Even today, most of my fear, anxiety, and sadness is about the future, the unknown. What will happen to him if we don’t get his volatility under control? What will it be like when he realizes that he is “different?” How will having a disabled brother affect Claire? Will there be a time when she rejects Liam (at least around her friends)? What if he never accomplishes the things I think he can?

Now that we are at age 8, I realize that Liam is really okay. He is a happy child with a full life and he has lots of people that care about him and love him just as he is. He has lots of interests and I don’t think that he feels much unhappiness about his life at all. No, he doesn’t really have what others would think of as “friends.” Claire is his best and really only true friend. He’s never had a play-date that wasn’t arranged by me and facilitated by a therapist or myself. His best birthday parties have had only adults and his sister as guests. He doesn’t get invited to many birthday parties and when he does get invited to one we usually don’t send him because he gets obsessed about opening the presents and is usually pretty agitated throughout. When we have attempted a party, he usually has to be taken home early. It’s odd to be living through things that used to cause me sleepless nights or hit me over the head with unbelievable grief and realize that the fear was much worse than reality. Reality is really often quite pleasant and enjoyable.

With each passing milestone I feel my acceptance for Liam, all parts of him, growing and deepening. He is my beloved son, a human being with gifts and talents and humor and complicated emotions, and weaknesses. There are times that getting through the day with him is tough, mostly because of his moodiness, but nothing ever changes the way I feel about him or my belief in him. I still worry about him. I can’t help but worry about his future. However, now that I have 8 years of daily experience living with a child with a severe disability my fear is less. I still can’t picture Liam at age 12 or 16 or 20. I can’t picture Claire at those ages either for that matter. I don’t know what they will be like. I don’t know what difficulties and triumphs will come into their lives. I do know that we can handle what comes our way. I do know that giving to both of these children what I feel is right in the moment is all that I can do. This life truly belongs to each of them, I am just here to guide them and support them and protect them as I can. How they persevere through the hardships of life is largely up to them. How they choose to accept themselves is really their choice. Accepting them for who they are, no matter what, is my choice.

I continue to have infinite belief that Liam can accomplish anything he wants. I continue to seek out any avenue of intervention that I believe will not cause him harm or discomfort and that I believe offers something to his growth and development. I view it as something he needs me to do to give him the best chance at a happy and fulfilled life. I don’t know what choices he would make for himself. If he could tell me what he wanted, would his daily life look different? I see it as my job to do what I think is best for him and then look to his response to determine when it is time for a change. I feel that I have helped to bring Liam to a point in his development that he can handle many of the things life requires and has to offer – vacations with his family, playing with his sister and other children, running errands, holidays, etc. I have helped bring him to a point where he enjoys talking and works to expand his own communication skills. Today he is observant of his environment, socially motivated to learn, engaged and open to life. I now see my role as letting go of needing to protect him so much. To trust in him, that he will bring good things into his life. To believe that others will love him and see his beauty and believe in him just as I do. Of course not all people will, but that is human nature. I have to work on letting go of that, not letting it hurt me so much, and not fearing, should Liam be treated unfairly, that he can’t handle it. In letting Liam out into the big, sometimes scary world, I believe that I am allowing other people, people just like my former self, who have no experience with disability and who may fear it, to know this beautiful person – to see that there is nothing to fear, he’s just like you or me. Perhaps if I had had the opportunity to meet a “Liam” in my childhood, I would have never felt the need to save him.

Thinking about all of this has begged the question “Who is it that needs saving?” Having Liam has actually saved me from a life of mediocrity. Yes, there have been tough times, times of extreme anguish, grief, loneliness, fear, poverty, anger. My former life was probably more comfy. Discomfort and stretching the boundaries of my beliefs, attitude, and scope of the world around me has given me a sense of strength that I would not have if it were not for Liam. All of my adult life I have struggled to find my true passion. I have wondered about my purpose. I didn’t choose autism, I feel that it chose me, and because of that I have a greater passion than I have ever known.

Parents want one simple thing for their children, happiness. Expecting parents commonly say, “I just hope for a healthy baby.” Why? The very idea of a baby with an illness or disability evokes fear that your child’s life will be something other than happy. When something comes into your life that you feel threatens your child’s potential happiness it causes you to reevaluate how you live your life and what is important to you. Suddenly, things that seemed so important disappear. For me, this meant not really caring about how my house looked, or if I had a cute haircut or stylish clothing. I don’t mean to belittle the importance and value of caring for yourself and wanting nice things, but when it comes right down to it, I would gladly give up anything to have the ability to do for Liam what I believe is in his best interest. We have had to give up lots of things. Even though I earned a masters degree, it was easy for me to put my career on the back burner because Liam needed me to be home. Gary and I have enjoyed renovating old homes as a hobby and, pre-Liam, we spent a lot of time fantasizing about our future “forever house.” It’s been easy to let go of wanting in this way, Liam’s needs are more important, more invigorating. Now our idea of a good future home is one that is simple, needs little maintenance, far away from a busy street, and cheap. Early on in trying to provide for Liam’s needs Gary and I had to sell almost all of our furniture to afford treatments for him. We held a garage sale and felt like we hit the jackpot when we made over $700. Easy. I didn’t care about parting with objects and living sparsely – less to take care of, to occupy my mind. Almost in an instant, our priorities changed and my joy came from feeling like I was taking control of what felt like an out of control situation. There have also been decisions that have been hard, but necessary. In the past we had to limit our holiday celebrations to small gatherings, usually held at our home, because Liam could not handle long days with no structure and lots of sitting around visiting. He needed his routine and lots of 1:1 time. I like sitting around, eating, drinking, and visiting with family, but with Liam melting down and/or worrying about when he would next melt down, holidays as usual were not fun for us or for Liam. Playing “creative finances” each month to try and make ends meet is a stress, but I also recognize that even though the way we are raising Liam taps our resources greatly, this is our choice and we are happy with it. Having autism come into our lives has forced us to live in the present. To make choices and decisions that work for us in the moment and to let go of worrying about the future or what others might think. It is kind a kind of freedom that I didn’t know before. I think I may have looked upon someone living their life the way we live today with a sense of sadness or pity, wishing that things were easier or that they had more. I now look at it as being really in touch with your values and living your life in accordance.

My concept of a “good life” has broadened. I believe that Liam can have a good life even if he were to stay exactly as he is today. This would depend upon my attitude and definition of a “good life.” If I limit my idea of this to a more conventional definition, I would probably feel pretty pessimistic and fearful. What comes of Liam is not in my control but my attitude about him is. It’s really all I have control over. I struggle with my attitude every day. It’s hard not to want more when your child is faced with a pervasive disorder. It’s hard to conceive of a happy or good life for Liam as a teenager or adult because we have not experienced that phase of life, it is foreign to me. I have experienced growing with this child through lots of phases of life and I know that each phase has been hard but also wonderful. Why should that not hold true into the future? So, today, my attitude is that anything is possible because the value of Liam’s future is in the eye of the beholder. I can choose to live in the moment, making decisions that work for him and for our family even if these decisions are hard and involve sacrifice. I can let go of old dreams to make way for new dreams. I can choose to be happy and strive for a great life even in the face of hardship. I can hold acceptance for Liam exactly as he is forever while also having eternal belief in his capabilities. I don’t have to choose between these two ideas. I can no longer fear autism. It is for all of these things that I can truly say that I am the one who has been saved and I owe this to my son.

Movie Review

Over Labor Day we took the kids to a movie. This is a rare event because we don’t always know how Liam is going to handle the theatre experience. The results have been mixed in the past depending on what the movie is and what kind of day he is having and what he has eaten, etc. But since we went to this movie I thought I would review it.

The movie we went to see was Up, the latest Pixar film. It was playing at a theatre that is part of a community center in a renovated elementary school that has bars and a restaurant and overnight rooms and a soaking pool and banquet rooms and one gym that is still a gym and another gym that was converted into a theatre, but instead of theatre chairs it had rows of sofas and comfy chairs and the best part is that you can drink beer and eat pizza while watching the movie. So, going into it I knew I was going to like this movie.

We went on Sunday before Labor Day and the movie started at 5:30. I was figuring we would get there at around 4:30 but didn’t account for Angie’s “getting ready” time so we didn’t really get there until 5:00 and it was already crowded. I was starting to not like this movie because the lines were long and it was filling up fast. Sure enough they sold out before we got through the line. Liam was already starting to have some trouble tolerating the wait in line and we were bracing ourselves for a meltdown as we told the kids we weren’t going to see the movie today. To our surprise, Claire was the one to lose it. She couldn’t understand why we couldn’t see the movie and began crying and didn’t want to leave. This of course always starts Liam on the same path but we decided to go to the restaurant and eat dinner. For Liam much of the time all you have to say is “fries” and he’s OK if he’s not too hungry to begin with. If he’s too hungry then waiting for the fries can be painful as he repeatedly smacks the table or knocks over saltshakers while saying, “Fries? Fries?” over and over. So, although I wasn’t enjoying the movie at this point, we successfully distracted both kids with dinner out and a promise to come back earlier the next day to see the movie.

The next day we came earlier and got through the line pretty quickly. We had pizza, popcorn, soda, and beer and we staked out a couch all to ourselves that had a table in front of it. So far so good. Liam sat on the aisle side by Angie. Claire was in the middle and I was on the other end. When we take Liam to movies it’s always good to have an exit strategy. We decided that if he needed to leave it was my turn to take him. He was already restless but so far I was enjoying the movie because Claire was easy to sit by and I had a beer in my hand. We just had to wait for the movie to start to see how Liam would do.

When Liam is restless or bored in a theatre or restaurant the first thing he starts saying is “Potty? Go potty? Wanna go potty?” And of course this time was no different. I had to take him knowing that this was just the first of many trips to the bathroom. In the bathroom Liam will stand at the urinal and flush several times before he’s even done and then walk to any other toilet with his pants around his ankles flushing as many times as he can before I am freed up enough to stop him. It’s hard to get him focused in a public restroom because there is so much to play with. He loves turning the faucet on and off and if there is an electric paper towel dispenser it is hard to get him away from that. All in all Liam is not very eco-friendly with the amount of water and paper that is wasted in public restrooms.

We got back to the couch and I settled back in with my beer. I took one sip and there it was again, “Potty? Wanna go Potty?”
“You just went Liam.” I said.
“What if he has to go poop?” Angie said. I knew she was going to say that.
So back we went and this time I just sat him on the toilet because I knew he wasn’t going to do it himself. At home he is fine by himself but like I said a public restroom is just too distracting. He sat there and started unrolling the toilet paper until I stopped him and he said, “All done?”

Back to the couch and the movie was starting. Oh, and I grabbed another beer on the way back even though I was barely started with my first one. I just knew I was going to need it.

So, Up is about an old man who is alone and is living by himself in an old house surrounded by development and he refuses to leave when developers want his property. The old man is voiced by Lou Grant from The Mary Tyler Moore Show. Lou Grant gets this idea to tie a bunch of balloons to his house and…
“Potty? Go Potty?”
“Come on…”
“Make sure you sit him on the toilet this time.” Said Angie.
“I did last time. He didn’t go. Come on Liam.”
“Yeah go potty.”

We went. Still nothing.

We came back and the movie was really getting interesting. There was a lot of dialogue and those parts were hard for Liam. If he wasn’t into what was happening on the screen he would kick the couch in front of us or smack his hands on the table or flop around or try to slide down to the floor. But there were exciting parts too and that is where Liam would start to get into it. The house floats up and away and there is a little kid that stows away on Lou Grant’s house and they end up in this weird land and get chased by a pack of dogs that are trained by this old explorer that lives in this land and…
“Potty?”
“Yeeees….”
This time we had success so I knew that I could say no to any more potty requests from here on out. I was really enjoying the movie and I didn’t want to be interrupted any more. Claire was also liking it and so was Angie. I was pretty sure Liam wasn’t going to make it through.

We got back to the couch and I was a little lost but still liking the movie. Lou Grant was having to match wits with the old explorer that turns out to be evil…
“Potty?”
“Nope.”
“Potty? Potty?!” Liam was starting to get louder.
“Liam, you don’t need to go.”
Liam started smacking the table again and it was becoming apparent that this was just going to escalate if I didn’t take him out of there. I won’t spoil the end of the movie for you because I don’t know how it ends.
“Come on Liam.”

We left the theatre and walked down the hall past the restroom.
“Potty?”
“No Liam.”
“No Potty.”
We left the building and got in the car. I figured we would drive around a little. I had to go to the bank anyway so we could kill time until the movie was out.
“Movie?” Said Liam
“Are you serious?” He was just not interested in the movie and now he wanted to go back in. I thought about it for about two seconds and said, “No let’s get some fries.”
“Fries.”
We drove to the bank first and that was a mistake because Liam had it in his mind that we were getting fries and did not anticipate any other stops before that. He started screaming and hitting and kicking the back of the seat in front of him.
“We are going to get fries buddy. We just have to stop here first.”
“Fries?!”
“Yes, we will okay?”
“Fries.” He was calming down a little but still unstable.

I finished at the bank and we were on our way to Burgerville for fries.
“Fries? Fries?!”
“Yes Liam We are getting fries.”
“Aw man…” He must have been hungrier than I thought because he was just really agitated.
We got to the drive through and I ordered the fries. There were a few cars ahead of us so it was taking longer than Liam’s liking. He was hitting and kicking the seat again and screaming, “Fries?!…Aw man!”
We got the fries and I knew once he ate them he would start to calm down but I didn’t dare give him the whole bag because I knew in the state he was in he would just throw them or dump them on the floor. I gave him one fry and he ate it. I started driving back toward the theatre. I gave him another fry and he threw it my head. I gave him another one and he ate it. He did pretty well for the most part but about every fifth fry was pinging me in the back of the head. He was a pretty good shot.

By the time we got back, the fries were gone and Liam was over his meltdown. We pulled into the parking lot and Liam said, “Movie?”
“Yep.” I said thinking that it was probably over by now. And even if it wasn’t I knew Liam wouldn’t sit through the rest of it. I was hoping I timed it right. We went back in the building and walked down the hall toward the theatre and there were Angie and Claire coming out. I did time it right.

So overall I give the whole movie experience two out of five stars but I’m thinking that score will go up as soon as I am able to rent it and sit in my basement with a beer watching it by myself. I’m really looking forward to that.

Glut 1 Deficiency - Could it be? Part 5

We went on working with our naturopath, early intervention services, and developing a home therapy program for Liam, intervening in any way we could. We hired a young woman named Katie, who was one of Liam’s day care providers, to be a “nannypist,” someone who would act as both a nanny and a therapist. Katie proved to be a wonderful addition to our lives. She was so dedicated to Liam. She read all of the books that I suggested and was just as driven to learn about autism and help Liam as I was. She was one of the only people in my life that I could really talk “on par” with about Liam, for she really understood what and why we were doing what we were doing. I trusted her implicitly and Liam adored her. We hired an ABA consultant who helped us develop an ABA home program. I began to work part time and Katie watched Liam and worked with him on the days that I was at work. Katie and I developed an eclectic program that we rotated throughout the day, including various interventions such as ABA, Floortime, and sensory integration. Most of our programming was pretty grass roots with Katie and I reading about how to do these therapies and just diving in, doing the best that we could. We couldn’t afford much in the way of consultation and, at the time, only had twice monthly meetings with our ABA consultant. I know that, should we have been able to afford more guidance and should I have understood Liam’s needs and the difference between all of these various interventions, our program could have been much stronger and more effective. Hindsight is always 20/20 and I know that. Despite this, I felt good about what we were doing and Liam definitely benefited.

Katie had some long days with Liam and we decided to enroll him in a gymnastics class and began taking him to the pool and the park to break up the day and allow them to get out of the house. One day I came home to find Katie feeling a little blue. “It’s just so hard to see Liam with all of these other little kids and to realize all of the things they can do compared to him” Katie said through tears. It was hard to hear these words from her – feelings and thoughts that I lived with, spoken out loud. It was hard for me to comfort her because I was fighting hard to conceal my deepest feelings about Liam. I still felt that in some way if I spoke these feelings out loud I was somehow betraying him. In that moment I also felt closeness to Katie that I don’t think I felt with anyone else in my life at that time; someone who loved Liam like a mother, someone who felt and was willing to speak about the pain I lived with each day. Katie and I also shared some joyous moments that I don’t think anyone but us could have really understood. We both knew Liam intimately. We knew things about him that no one else could possibly know. When Liam was about three years of age I pushed his early intervention team to evaluate him for Apraxia, a motor-based speech disorder. I had done a lot of reading about Apraxia and felt that Liam demonstrated many of the symptoms. In particular, Liam really couldn’t repeat anything we said. He would try, his mouth would move but nothing or the wrong thing would come out. He was really much better at self-generated speech. At times, words and sometimes whole phrases would pop out of his little mouth. I was stunned one day to hear this little child say, “dive da cah” as he pushed a little car around. This from a child who never even said mama or dada had just said a whole phrase that was appropriate to what he was doing. We never heard that phrase again. I tried to get it out of him, but nothing. On another occasion, Liam said, “More bubbles” when Katie was blowing bubbles with him. We stood and looked at one another shocked. We were working on him saying “buh.” Just as before though, we couldn’t get him to do it again. In fact, it would be many years before I would hear Liam actually put two words together. Katie and I shared these little victories together as well as the pain of not being able to get there again with Liam. Other symptoms of Apraxia that Liam showed were not having a consistent word for something. For example, for the word “open” Liam would sometimes say “Oh,” other times it would be “Oh-pah,” and yet at other times it would be “Oh-pah-pah.” It was maddening. He also dropped the endings of words and could not say a lot of vowel sounds. He couldn’t stick his tongue out in imitation or move his mouth, or any part of his body for that matter, on command. So on this day when Liam was three, Katie and I were there for his long awaited Apraxia evaluation. In my inexperience and naiveté I thought that if Liam were deemed Apraxic we would somehow get some type of speech therapy that would change the struggle we were in to help him learn to talk. I had mixed emotions about this evaluation. I hadn’t been too impressed with the speech therapists that had been working with Liam largely because he wasn’t making any progress and they didn’t seem to have an explanation for this or a plan. Some of them could not even get him to cooperate and participate in the session. I was desperate to help him develop verbal communication and I was angry, maybe unfairly at times, that no one seemed to have a strategy or plan for how we were going to get Liam talking. To my elation, the speech therapist that came to do this evaluation was amazing. She got Liam to sit in a chair, imitate her, and move his tongue. He made more speech sounds in that hour than I think I had heard come out of him over the past month. She also got him to lick a dumb-dumb sucker. Now if you can imagine two grown women (Katie and I) clutching one another, holding our breath while watching all of this. We were both thinking “oh there is no way Liam is going to lick that sucker.” Liam wouldn’t touch candy and believe me I had tried to get him to lick a sucker. I was thinking, “This woman doesn’t know what she’s up against with Liam. Most kids will work for a sucker but not this one.” To our great surprise there he was LOVING this sucker and working hard to move his tongue up, down, side to side, in and out. Katie and I were quietly jumping up and down cheering “Oh my gosh! I can’t believe he’s doing it! Way to go Liam.” We didn’t want to distract him and end this magical moment, but we were bursting inside. We were in total awe of this woman and what she had accomplished with Liam on that day. We were celebrating Liam big time and my belief that he could learn to talk was reaffirmed. We just needed the right therapist and the right therapy. I can honestly say that Katie is one of the few people in my life that I have shared this kind of simple, somewhat strange, joy with. It truly takes a special person and unusual circumstances to get that excited about a child eating a sucker.
Liam was tentatively diagnosed with Apraxia from this evaluation, but it really didn’t change anything about his actual speech therapy. I fought the school system and paraded him around to one private speech therapist after another until finally giving up and home schooling him at age 5 under the guidance of Emily, an amazing savior who brought Verbal Behavior into our lives, which was the first intervention that really worked for Liam’s speech development and gave him his voice.

Katie stayed with us until Liam was 3 ½. She left with her husband to travel around South America and then spent the next several years teaching English in China. As the days approached before her departure, I tried hard not to think about life without her. I couldn’t comprehend losing this person, she had at times been my life line, my confidant, my supporter and someone I trusted to carry out my almost fanatical desire to help him when I could not be there myself. When she left I suffered a blow. I felt like I had lost my right arm. I was lonely and felt isolated. I missed her deeply. How could I do this without her? Liam had lost his friend. What was he thinking about where this special friend had gone? After two weeks of crying and feeling sorry for myself, I dusted myself off and got back to work. Liam needed me to be strong and we would survive. We were off to new adventures, new special people that would grace our lives with their presence and bring new gifts in ways that I could not have anticipated.

Throughout these early years I felt that I was running a race against autism with the prize being Liam’s soul. I knew that I could be a fierce opponent if I set my mind to it … but there was one little problem. I was a mere mortal who got weary from time to time and needed to sleep and eat and work. Autism was a savage beast that needed no rest. I found it hard to rest. I stayed up reading until 2 am every night, researched by Google during the day whenever I had a free moment, and spent endless hours trying to play with Liam on the floor. I felt that I had to make up for the hours that I slept or took a shower or ate, otherwise Autism would win I would lose my child forever. There was no way I was going to let that happen, not to my baby. When I was home, no matter what I was doing, I was constantly observing Liam. If he began to engage in self-stimulatory behavior such as spinning a bowl, opening a door or drawer repetitively, or sticking his fingers in a register vent for all of eternity, I would get down on the floor and join him. There we would sit, Mommy and Liam side by side in the kitchen opening and closing drawers together. At some point Liam would notice me or my drawer and would briefly shift his attention to what I was doing. A connection! There it was. He noticed me. I would smile and tickle him “yeah little one, here I am buddy. It’s mommy.” Now that I had his attention, what could I do to keep it going, to make what I bring to the drawer more interesting? I would begin to open and close my drawer faster and faster, making silly sound effects. Sometimes he would ignore me and go back to opening and closing his drawer, but other times he would imitate me or just giggle and watch. The best times of all were when he would look up at me and smile so as to say “hi!” In those moments I felt like I was on top of the world. Liam was playing with ME! This was our version of patty-cake, albeit a little unorthodox, but we were interacting; I was playing with my distant little child. I viewed what I was doing as changing the way his brain was getting wired. I felt that I needed to get in there and make these activities social, interactive and to not let any opportunity go by if I was going to be successful at wiring his brain to be interested in the outside world. I knew that his behavior held some meaning to him (at the time I didn’t quite know what that meaning was) but I felt that if I didn’t intervene, it would never hold a meaning that he could share with others. It was hard for me to relax, socialize, to think about anything else. Time was of the essence and if I slacked off autism would pull ahead and I could lose him forever. That was not going to happen on my watch.

I was feeling optimistic. These interventions seemed to be working. Liam was beginning to comprehend some words and simple directions. He knew his name. He was starting to use some gestures to communicate. He was eating and growing better than he had been during his first year of life. There was still something that bothered me that stayed in the pit of my stomach and yearned for an answer. What had happened to my child? It seemed like all of the medical problems, “anomalies” if you will, could not truly be separate, unrelated conditions. I had never met another child with autism that had trigonocephaly and failure to thrive and strabismus. Many children on the spectrum had intestinal problems, ear infections, and seemingly weak immune systems. Those things seemed to be common, but Liam’s constellations of medical problems seemed unique to him. I had this deep intuition that Liam’s problems were related, that they added up to some known medical condition, and if we could just find out what it was, maybe, just maybe we could help him even more. Maybe we could save him. One day at work I had some free time and punched into Google “trigonocephaly and autism.” To my shock and horror up popped some hits. “Mild Trigonocephaly: Is it an Autistic Head Shape?” and “Trignoncephaly Associated with Symptoms.” There were a handful of articles on pubmed, a reputable site for medical journal articles. I was only able to read the abstracts as I didn’t have access to the full articles, but these abstracts described other children with mild trignocephaly who had language delays, motor problems, hypotonia, strabismus, hyperactivite, behavior problems, cognitive deficits, autistic features, and on and on. While they didn’t reference anything about failure to thrive or diarrhea, they otherwise described what we were experiencing with Liam developmentally. The articles described this head shape as a subset of autism and stated that there were known genetic defects responsible for this head shape. I felt sick. I couldn’t breath. I sat there motionless, in disbelief. I read the absracts over and over. My heart sank. Tears were coming and I couldn’t stop them. How could this be? We saw the geneticist and the neurosurgeon. We got the CAT scan. We were told, “mild forms of trigonocephaly were not known to be associated with developmental delays” that Liam’s development was not a result of this head shape. Here I was reading the exact opposite. There were other children just like Liam who also had mild trigonocephaly. Once again I could not understand how I, a mere first time mother, could find this information and no one else seemed to know about it. Once again I was mad at myself for not plugging both trigonocephaly and autism into Google earlier. How stupid could I be!

A Japanese doctor who began investigating children with autistic features, developmental delay and mild forms of trigonocephaly first published the articles in Japanese. This doctor had done spect scans to look at the blood flow in affected children’s brains and found reduced blood flow to the frontal lobes. He also did skull x-rays that showed raised intracranial pressure due to the narrowing of the forehead which puts pressure on the brain. He had performed surgery to release the closed suture in a handful of kids and these kids were showing some improvements. Liam was already two years of age at this time. Was it too late for him? Should he have this surgery? Would I want to put him through that? How could I not? I was overwhelmed with emotion. I quickly printed off all of the abstracts and drafted a quick letter urging his pediatrician to help us explore this issue. I faxed it that same day to every doctor we had ever seen. Our pediatrician did respond saying that it was “interesting” and “if we wanted he could refer us back to the neurosurgeon.” Hell yes we are going back to the neurosurgeon! I want an appointment ASAP! We got in quickly but the neurosurgeon said that this was new information to him, that “things are different in Japan.” He could repeat the CAT scan and we could see a different neurosurgeon in the craniofacial disorders clinic to follow-up because he was no longer going to be seeing craniofacial patients. He maintained that he would not operate on Liam. I don’t really remember what all he was saying because I was still feeling numb and uncertain of what I was wanting. What I heard was “blah, blah, blah, can’t help you. Blah, blah, blah, not interested.” We were on to a second opinion. I was not too interested in seeing another neurosurgeon in the same practice. What was the likelihood that this person would go against the first neurosurgeons recommendations, or lack there of? We were going to find someone from some other clinic and get his or her opinion.

We traveled to Seattle a few months later to see a reportedly well-known craniofacial specialist at Seattle Children’s Hospital to gain a second opinion. In advance I had sent him Liam’s medical records, the journal abstracts from pub med, and Liam’s CAT scan films. I waited in anticipation for this appointment, partly nervous that it would end like all the others, partly excited that this could be a turning point for Liam and for us. My hopes were once again dashed as he too said, “blah blah blah, can’t help you. Blah, blah, blah, not interested.” Again I don’t really remember what all he said, other than something about it being interesting, not his experience, and that there are no long term studies on the outcome of operating on a child with mild trigonocephaly and developmental problems to determine if the potential benefit outweighed the risk. We went home somewhat deflated, but somewhat relieved because it would be hard to decide to put Liam through such an invasive surgery. I was still mad, mostly at the situation. I knew that Liam’s trigonocephaly was related to his problems. In my mind there was no way it could not be related. It just pissed me off to realize that there was nothing I cold do about it, no clear path, and no previously charted course. I dropped it for the time being and went back to focusing on the things I felt I could do, the things that seemed to be working.

To be continued.

Manly Men

It was two weeks before Christmas 2008. Liam was seven, Claire was five, and Angie and I were…well that’s not important. We were approaching the weekend and gearing up to get a Christmas tree. Although I like Christmas, I have a hard time with things like shopping, and decorating, and baking, and wrapping, and all the stuff that we are supposed to be as excited about as the kids are. The one thing I do like is getting the Christmas tree. I used to not like to get the Christmas tree because we used to just go out and buy one from a lot. The last time we went to get a lot tree was about four years before. I remember Angie and I at the lot with Liam and Claire all bundled up. Liam was four and Claire was two. We spent about an hour there looking at all the trees to find the perfect one. When I say we, I mean Angie. I basically stopped caring what tree we got after the first three times I was chastised for my suggestions:
“How ‘bout that one?”
“No, that’s a dog dressed up like a Christmas tree.”
I found out very quickly that I have no taste in Christmas trees so I would just silently tag along with the kids while Angie selected the absolute best tree in the northwest.
I would just say to myself, “This would only take five minutes if I were here by myself.”
Then I would answer, “Yes but do you really want to be accused of Ruining Christmas by picking the wrong tree? Remember, you used to decorate your overgrown philodendron for Christmas back when you had your own place.”
“Yes, my own place…(sigh)…but your right. I need to just smile and nod.”

So after Angie selected the perfect tree we took it up to the tree lady, and the tree lady said, “Eighty five dollars please.”
“Ha, funny” I said.
The tree lady didn’t laugh. She just stared at me.
“Oh really?” I said. “Eighty five dollars?”
“Yes sir. It’s a real beauty.”
“Yes I know. We live in the northwest. We’re surrounded by them. I could just go out and hit one with my car and drag it home and it wouldn’t cost me anything… if you don’t count car damage repair.”
“Well, sir you are welcome to do that.”
“I think I will. Come on Honey.”
As we were leaving Angie said, “So, what’s your plan here?”
“We’ll go to a U cut place tomorrow and cut one ourselves. The tree lady doesn’t have to know we didn’t run it over.”
“Are there U cut places around here?”
“They’re all over. I think there is one on Sauvie Island. It’s gotta be cheaper than eighty-five bucks. That’s just ridiculous.”

So I looked it up when we got home and sure enough there was a U cut farm on Sauvie Island. We had been going there for years to hike, buy produce, and get pumpkins for Halloween. The kids loved it and so did we. I don’t know why we never thought of it before.

We drove to the U cut farm the next day. They give you a tree saw and a cart and let you loose on the unsuspecting trees. Liam loved it. He wanted to carry the saw and I let him until it was clear that he wanted to saw everything in his path; every tree, the cart, his shoe, a squirrel. I figured I had better hold the saw until Angie found the perfect tree. We didn’t really mind it taking so long because we all just loved being out there walking through the trees and getting into the whole experience. When Angie finally did choose the tree she wanted, I cut it down with Liam “helping” me hand over hand with the saw. He helped me load it into the cart with great glee. We took it back to the tree lady who bundled it for us and charged us forty-five dollars; forty-five dollars for the tree and the experience. This is the first year I started to really get into Christmas, and we did the U cut tree ever since.

So, back to Christmas of 2008. Two weeks before Christmas and we were ready to get it going when Angie got a call from a family member in Indiana. Her Grandpa was really sick and not expected to be around much longer. We decided that Angie would go out to Indiana to see her grandpa for the last time, and since he had never met Claire, Angie would take Claire with her. The timing was bad but it was what it was. It took a day to get our minds wrapped around it but we figured they would go for five days and be back in time for Christmas.
“I guess that means Liam and I will have to get the tree by ourselves.” I said.
“Oh.” I could tell what she was thinking.
“I know.” I said. “You think we’ll get a crappy tree.”
“Um…yeah.”
“Well you know what? You’re right. I know there is no chance of Liam and I picking the tree you would pick, but you’re gonna love it anyway because we picked it out.”
She let out a big sigh. “Yeah. I know I will…but just try, OK?”
“Of course.”

We took Angie and Claire to the airport and Liam and I started driving back to the house.
“You know what this means buddy?” I said to Liam in the back seat.
“We are on our own, man.”
“Own.”
“Just two manly men hangin’ out for five days.”
“Man.”
“We can do whatever we want. We can hang out in our boxers…”
“Boxers.”
“We can get movies from the movie store…”
“’vie store.”
“And on Saturday you and I get to go get a Christmas tree.”
“Kismas tree! Yeah. Kismas tree!”
“You want to get a Christmas tree?”
“Yeah! Kismas tree!”
“OK then, we’ll go on Saturday.”
This was Thursday so all I heard for the next two days was “Kismas tree? Kismas tree?” accompanied by two of the biggest brown eyes looking straight at mine. Liam has big eyes anyway, but when he really wants something he has an uncanny ability to make them twice as big and twice as irresistible.

We made the best of our time together as manly men. We reinstituted the pants optional policy I had in my single days and rented manly movies like Thomas The Tank Engine and The Brave Little Toaster. We ate chips on the couch and drank single malt scotch and smoked Dominican cigars…well it was really apple juice and gluten free pretzel sticks but it felt manly. All the while I was deflecting Liam’s intermittent requests to go get the “kismas tree” until Saturday.

Saturday came around and when Liam and I woke up the outside world was covered in snow. Not only that, but more snow was falling from the sky at a very rapid rate. I won’t say it never snows in Portland but we rarely get snowstorms like this and never at Christmas time. It usually just rains for Christmas. Liam knew this was Christmas tree day because I had made that clear the day before after every time he said “kismas tree.” He was very excited to go and I was having serious doubts about driving anywhere. The Jeep wasn’t running and all we had was our little Saturn Wagon to venture out in. I wouldn’t have been too worried if I could drive the Jeep, because it had four wheel drive, but the Saturn only had front wheel drive. Looking out the window, I saw no cars on the road.
“Kismas tree?” Liam said with the same intensely big eyes and an excited grin on his face.
“Buddy, I don’t know if we can go. Look at the snow outside.”
“Snow…kismas tree?” Still excited.
I knew if I explained it to him it would take a while for him to understand and then he would probably throw a fit but I also knew he would get over it, but looking into those eyes and looking at how excited he was, I was starting to get as equally disappointed as I knew he would be. I started to think; “Is it that bad? I know there are no other cars out there but people in Portland panic and the city shuts down for even a little bit of snow. Most people don’t know how to drive in snow but I do. Visibility is pretty low but if I just go slow and steady, take my time it should be fine.”
I know this was a bad decision but I didn’t have a bad feeling about it when I said to Liam “OK buddy, let’s get ready to go.”
Liam lit up like a kismas tree and we went to get on all of our gear. We put on our boots, gloves, hats, scarves (Liam chose one of Claire’s manly pink scarves), and coats. We stepped out on the porch into the snowstorm and quickly stepped back inside. It was colder than we thought so we put some pants on, and we were on our way.

We got in the car and as I pulled out into the crunching snow with Liam chanting “Kismas tree. Kismas tree” Between giggles, I was envisioning the newspaper headlines: “Manly man and son trapped in snow covered car for three days surviving off accumulation of French fries and raisins thrown on the car floor by resourceful son months before.” I went slow and easy squinting my eyes thinking that it was helping me see through the accelerating snowflakes. It usually took about fifteen minutes to get to Sauvie Island but I was going so slow that I think it took about an hour. There were literally no cars on the road except us. Liam was clearly not worried in his kismas tree nirvana. I told myself I wasn’t worried and I mostly believed me. We worked our way over the bridge and up the country road to where the tree farm was. When we got there, there was nobody there. There was a sign though. Liam and I had to get out of the car to go read it. It said, “Tree farm closed. Going out of business.” We just stood there in the pounding silent snow, cold and silent…standing…staring…cold…
“How could they go out of business?” I thought. “It’s Christmas.”
“Kismas tree.” Said Liam.
“No kismas tree, buddy…it’s closed.”
“Closed.”
“Yep, closed.”
“Kismas tree?”
“Let’s get back in the car.”
“Kismas tree?” His voice was beginning to have a telltale pre meltdown quiver.
“Liam, I will find you a Christmas tree today, OK? We just have to look a little more.”
“Look.” I think something about the snow helped him stay calm. He surprisingly accepted what I had t say and went back to his “kismas tree” chant.

I started to drive us back along the silent, snow covered road wondering where I was going to find a Christmas tree. As I drove past the farm we always go to for produce in season, and for pumpkins in the fall, I could barely make out through the ever-increasing snowflakes, rows of green. The farm would usually shut down after the fall harvest but there was definitely activity there and those were trees in the parking lot. I pulled in and Liam and I got out of the car. The tree lady greeted us warmly and seemed happy to see us.
“Did you guys drive all the way out here from the city?” She smiled.
“Yes we did.” I said in my most manly voice.
“Wow you guys are brave.”
“Yes we are.”
“I haven’t seen many people out and about today. It’s a crazy snow storm but I love it.”
“Yeah it’s fun but maybe not the best idea to be driving out in it right now.”
“Oh, you’re fine. Can I get you some hot cider?”
“Want some cider Liam?”
“Ci…” Said Liam.
“Yeah hot cider. Want some?”
“Yeah”
“I guess two ciders then.”
“I’ll be right back”
While she got our ciders, Liam and I went over to look at the trees. They were already cut of course. They were lot trees but at this point we just needed a tree and I was betting they wouldn’t be eight five dollars.
“Here’s your ciders.” The tree lady said still smiling as she handed us each our cups.
I took a sip of mine and Liam poured his out into the snow.
“Liam come on.” I said. “I’m sorry he um…”
“Oh that’s OK.” She said. “He got what he wanted out of it.”
Liam giggled and watched the steam rise as the cider melted the snow.
“…You’re the coolest tree lady ever.” I said.
“You’re still gonna pay for it of course.”
“Of course.”
“Well should we look at some trees since you came all this way?”
We started looking at the trees that were half covered in snow and were getting colder by the minute; at least I was. Liam doesn’t always seem effected by cold and he has a pretty high pain threshold. I really didn’t want to stay too long picking out a tree but I didn’t want Angie to be completely disappointed in whatever tree we got. Then I got a brilliant idea. If I let Liam pick the tree all by himself there was no way she could be disappointed if she knew he chose it.
“Liam, which Christmas tree do you like?”
“That one?”
“No, that’s a dog dressed up like a Christmas tree.” I did learn something over the years.
“That one.” He said pointing to a decent sized tree.
“We’ll take that one.” I said to the tree lady. “How much is it?”
“That one’s forty five dollars.”
“That’s a good price. Same as the U cuts”
“That’s because they were all grown on the island.”

We paid for the tree and tied it to the roof of the car and finished just before my fingers were about to fall off.
“Have a safe trip home.” She said warmly.
“Thanks a lot tree lady.” I said as I finished securing Liam in his seat.

We inched our way along the road just as we had on the way there. The snow never let up and it took another hour to get home. Liam was all happy babbling and giggles the whole way.

When we got home we pulled the tree into the house and set it in the stand. Liam had to be right on in it with me from “helping” carry it in the house to “lifting” it into the stand and helping turn the screws on the stand. When we were done we had a pretty decent tree mostly straight in the stand emitting the Christmas tree smell.
“Deck?” Said Liam.
“Oh no buddy, we have to wait for mommy to decorate it. We would definitely screw that up.”
“Screw.”
“How about we build a fire?”
“Fire! Yeah!” Liam loves fire. Probably a little too much but it really makes him happy when we have a fire in the fireplace.
“How about some popcorn too?”
“Yes.”

So we sat in front of the fire in our boxers eating popcorn reflecting on our adventure.
“I’d say it was a pretty manly day, huh buddy?”
“Man.”

Glut 1 Deficiency - Could it be? Part 4

Back on the medical front, Liam continued to struggle with weight gain, frequent illness, strabismus, and now had developed severe diarrhea. He would have diarrhea after anything he ate (which wasn’t much) and it often contained mucous and undigested food. It was foul. It could happen anywhere, anytime and we always had to carry extra clothing with us because it could explode out the top and legs of his diaper, making a huge, disgusting mess. We had switched from seeing the nurse practitioner to the pediatrician who had last consulted on Liam’s ridge at 9 months, as we believed that he recognized the problem and perhaps was more knowledgeable. He was the first doctor to bring up the possibility of Liam having an inborn error of metabolism. This meant that Liam’s body might not be able to properly break down and utilize food, resulting in him not making or absorbing vital nutrients. The doctor ran some tests. He told me they would be looking at Liam’s amino acids. “Amino what’s?” I said. He went on to talk some gobbeldygook about amino acids being proteins that are the building blocks of life. I still had no idea what he meant but was fully supportive of more testing. The results came back not quite normal, but not specifically indicative of any known metabolic disorder. Of course this was the case. Another anomaly. Great.

At meal times, if Liam ate anything, he would often end up staring off into space. Well, not space exactly. It seemed as if he was staring at something very specific, just something that we could not see. He would stare very intently and laugh and laugh. We would hold our hand up in front of his eyes and he would reach up and push our hand out of the way or look around it, staring fixedly at this unknown thing. We used to say, “Liam sees angles.” We thought this was cute. He was so quiet and serious as an older baby and, with this behavior, we tried to find some meaning in it – he was a little Buddha, a spiritual being. After I began my education in autism I came to understand that this behavior was more likely an indication that Liam was hallucinating. It is theorized that some children with autism have an inability to properly digest the proteins in wheat (gluten) and dairy (casein). The proteins are only broken down partially and become similar in chemical structure to morphine. I also learned how chronic infections such as ear infections are common in these same children with autism and that, due to these infections and subsequent overuse of antibiotics, these children develop yeast infections and an overgrowth of bad (not beneficial) bacteria. The antibiotics not only kill off the offending bacteria responsible for the infection, but also the beneficial good bacteria and this results in an imbalance of the gut flora so essential for healthy digestion and overall gut health. The improperly digested proteins in combination with the bacteria and yeast overgrowth can damage the intestinal lining making it porous. A healthy intestinal track only allows certain essential nutrients to enter the blood stream, keeping everything else in the intestines. When the intestines become damaged, things that should not enter the blood stream can leak out. This is known as “leaky gut syndrome.” In the case of improperly digested gluten and casein, as it is similar in structure to morphine which can permeate the blood brain barrier, so too do these proteins, which is why Liam would hallucinate after eating. Reading about this was a shock. This behavior that I found to be cute, spiritual like, was actually a serious problem and something that could be hurting Liam’s brain. It certainly was not helping Liam to connect with the real world or pay attention to things that are relevant. No wonder he could stare at the lines created by repetitively opening and closing doors and drawers with such focus and glee for hours, he was tripping. With Liam’s failure to thrive, extremely limited (almost non-existent) diet, and failing health, we had no qualms about trying the Gluten Free Casein Free (GFCF) diet. I couldn’t implement it fast enough. Within three days of no dairy products, Liam was suddenly free of his respiratory illness. No more coughing, runny nose, elevated temperatures, or ear infections (ear infections did return at age 4 – more on that later). It was amazing. Gluten takes longer (about 3 months) to get out of your system. With the removal of gluten we did see an end to the baby Buddha behavior and he seemed more “with-it.” He has remained GFCF ever since.

We began seeing a naturopathic physician who was well known in the community for utilizing the DAN! Protocol with autistic children. She helped us navigate further treatments for Liam such as vitamin and mineral and fatty acid supplementation, all aimed at restoring the imbalances in his body and helping to repair his damaged gut. We found a super supportive nutritionist who formulated a GFCF formula replacement for Liam that was a combination of fortified rice milk, gluten free rice protein powder, brown rice syrup, and flax oil. We would mix up a big batch of this for Liam every day and to our amazement he would gulp it down. Unbelievable. Liam still wasn’t eating solid food well so we mixed up a big bowl of rice cereal with pureed meat, vegetables, and fruit and threw in all of his supplements (vitamins, minerals, cod liver oil, etc.), gave it a whirl, and fed it to him with a spoon. We called it glop. Liam loved glop. It makes me chuckle to think back to those days and how Gary and I would ask one another “Did you give Liam his glop yet?” We didn’t want to overdose him on supplements by accidentally giving it to him twice. Liam did enjoy gluten free waffles. Gary invented the “waffle pizza” which was ground meats and veggies mixed with dairy free butter substitute and spread on a waffle. If we cut the waffle pizza up in pieces and presented it to Liam “spread” side down, he would eat it without objection. It always seemed strange to me how Liam would eat these things happily but Popsicles, juice, Cheerios, pasta, bananas, candy were responded to as if they were poison. We got really creative over time it became sort of an obsession for me and I spent many hours in the kitchen whipping up various ways to sneak calories into Liam. We were happy to finally have some support and to finally get some nutrition into him. He made it back onto the weight chart, only to the tenth percentile, but he was on it and that was confirmation that we were on the right track.

Solving Liam’s gastrointestinal issues proved to be much more difficult. No matter what we did, Liam would still have explosive diarrhea, often multiple times per day. Changing his diaper was always a major chore and, in retrospect, we should have bought stock in baby wipes because we sure went through them like wildfire. We requested that Liam’s pediatrician test his antibodies to gluten to rule out the possibility of Celiac Disease which can produce the symptoms that Liam was experiencing. I didn’t really feel that Liam had Celiac because the treatment was removing gluten from the diet, which we had already done, and Liam still had major diarrhea. The test results were interesting, but not likely suggestive of Celiac. I won’t get too technical by explaining the difference between IGG and IGA antibodies, but this test showed that Liam’s body was producing sky high IGG antibodies to gluten, which is not normal. His IGA antibodies were low (normal). In Celiac, it is usually the IGA antibodies that are elevated. Nonetheless, we were referred to a gastroenterologist for further evaluation. We were not able to get an appointment with this specialist for six months, so we had to wait. Finally, the big day arrived. We were so hoping to get some help for Liam, some kind of treatment for his diarrhea and poor growth.

This appointment was a major disaster and the beginning of a deepening understanding of the stigma that surrounds children with autism and their parents within the medical community, especially when it comes to the concept that “leaky gut syndrome” and the speculation swirling around childhood immunizations, in particular MMR, may be implicated in this condition. Being unaware of how we might be viewed, I openly shared with her our observations, theories and interventions thus far. In response to our story, her demeanor suggested that she was judging us to be parents who were being “taken” by vulturous charlatans who preyed upon desperate parents seeking help for their un-helpable children by offering unsubstantiated theories and treatment. She didn’t really seem curious about Liam or our experiences. In addition to consistently calling him by the wrong name, referring to him as a “she”, and talking about another patient with one of the nurses in front of us (major HIPPA violation) she had already made up her mind that there was no reason to do any testing and that we should put Liam back on gluten. She did say that if we wanted to test him for Celiac we would need to put him back on gluten for three months and then do a colonoscopy to test for Celiac. She couldn’t really say if she felt there was a chance he did have Celiac (which would be important to know). I did know that I wasn’t about to put Liam back on gluten because he was doing so much better off of it – he was actually eating, had gained some weight, was no longer hallucinating at mealtime. Part of me was a little mad that we weren’t seen in a timelier manner because at the time we were referred to this specialist we had just taken Liam off of gluten. We could have done the test for Celiac at that point rather than risking feeding him gluten again. I didn’t trust this doctors interest in Liam anyway, and I certainly wasn’t going to go back to a gluten containing diet under her suggestion. I may have been more persuaded if I felt that she was interested in Liam’s case and truly wanting to partner with us to help our son. She also bluntly stated “Well, if his height to weight ration gets any worse we’ll have to tube feed him.” “Tube feed him! Why?” I didn’t understand her willingness to stick a tube down his nose but resistance to actually investigating the source of his diarrhea. No way was I going to jump to tube feeding as an intervention, not until all of my efforts to understand what was wrong and remedy the underlying problem had failed. Her final “recommendation” was to enter Liam into her research study for failure to thrive. This study was looking at the hunger center in the brain and how it may or may not be implicated in failure to thrive. She admitted that there would be little or no benefit to Liam himself by being part of this study, but that his contribution may add to medicine’s understanding of failure to thrive. Being part of this study meant hospitalizing Liam 3 times throughout the year for several days. No thank you. I felt that Liam was hungry and that his poor growth and diarrhea was much better explained by the autism literature than something to do with hunger. I certainly wasn’t going to put Liam through any evaluations and separations from home for this woman and her interests. We left, never to return and I’ve never regretted our decision.

To be continued

Diggers And Toast

I wake up at about 5:15 every morning on workdays. I like to capture at least a little morning time to myself, so the trick is to get up before Liam wakes up. It usually doesn’t happen. Liam can be in a deep sleep but he seems to have this extra sense. No matter how quietly I get up and no matter how seemingly dead to the world he is, he springs right up with one thing and one thing only on his mind:

Diggers.

I made the mistake once of showing him some You Tube videos of construction equipment and now it has become an obsession. He can sit and watch diggers, bulldozers, cranes, dump trucks, etc. for as long as we let him. And if we don’t let him, it sounds something like this: “Diggers? Diggers? Diggers? Diggers? I want diggers. Diggers? Diggers? Diggers? Hot dog? I want diggers. Diggers? Diggers? Diggers? Diggers? Diggers? Diggers?”
“Oh, you want diggers.”
“Yeah.”

So when Liam throws this digger mantra at his pre-coffee dad, what starts as an extreme annoyance quickly becomes an opportunity to grab a little “me” time as I pull out the laptop and get him set up with the You Tube diggers. Once he is in front of his diggers with an eager grin on his face I can grab at least one cup of coffee before my day starts.

The other thing that is important for Liam in the morning is that he eats fairly soon after he wakes up. If we wait too long to feed him, even if he doesn’t act hungry, he can get extremely agitated. If he is wanting his diggers he will not eat, but if he is watching his diggers he will gladly eat while he’s watching. I usually make him some gluten free toast (his system can’t tolerate wheat or dairy) with peanut butter and jelly on it. This is how we start the day; Liam watching his diggers eating peanut butter and jelly toast and me slowly waking up with my coffee to the sound of working diggers on You Tube, delighted giggles, and incoherent comments about diggers digging.

As much as this makes for an easier morning, there are a few drawbacks. Liam can’t keep his hands off the computer while he is watching and he just starts pushing buttons that mess up the computer in ways I don’t understand, so I sometimes have to spend some time trying to undo whatever it is he just did while he is screaming “DIGGERS?!” repeatedly in my ear. It is hard to disengage him from the digger videos but usually with a little advanced warning such as “One more and then all done.” We can get on with our day. There is always peanut butter and jelly on my keyboard.

After coffee I can usually grab a quick shower and get ready to walk Chester while Liam is still watching diggers and eating. The next big task is getting Angie up so I can get the dog out the door. She is not a good getter upper. This I don’t understand. I always tell her “It’s like taking off a band aid. Do it quick and painless and once you’re up it’s great.” She clearly does not see the wisdom in my method as she makes the process as slow and painful as possible.

So walking Chester is another way of grabbing a little more of the morning for myself. In the winter it is still dark when I’m out and it is a really weird but strangely satisfying feeling to be out and about at this time.

I get about 30 minutes of dog walking and then I come back to my favorite scene: The computer is off, Angie is on the couch trying to drink coffee with Liam, jelly faced, snuggled up against her giggling softly, putting her hands on his face, and loving every minute of this precious snuggle time with his mommy. It is clear that mommy time far outweighs any draw the diggers may have had just minutes ago. Although Liam will follow me around the house all day wanting to do whatever I’m doing, I do not have the kind of snuggle appeal that Angie has. She can sit still with him and he can sit still with her and they can enjoy each other that way. If it’s Liam and me he always wants to be doing something active with me (if the diggers aren’t on), not sitting still. I don’t mind this for the most part. I like that he sees us differently. It is just more evidence that he is distinctively engaged with the world and understands the different nature of different relationships, whether the relationship is with Mommy, Daddy, Claire, Chester, or diggers.

Sunday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New Developments

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

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

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

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

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

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

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

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

Liam From His Grandpa's Perspective

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

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

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

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

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



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

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

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

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

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

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

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

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

Phil Paquin, Liam’s Grandpapa

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.