The Professionals

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

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

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

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

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

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

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

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

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

Damn you China.

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

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

Damn you Texas.

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

Damn you Dr. Willis.

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