Friday, October 22, 2010

Why Every Decision I Make Matters

Lisa Brandolo Johnson
www.grembe.com

I recently read about researchers who suspect that children with autism have a different chemical fingerprint in their urine than neurotypical children. While the researchers' claims are questionable, a urine test for autism would save me so much emotional anguish. It isn't that I really think my son was misdiagnosed and that he is on the spectrum -- but it would just be a final answer. A yes or no test would be objective, it would remove the human element of error. It would be concrete.

I am a parent of a child who, according to the Autism Diagnosis Observation Scale (ADOS), is classified as non-PDD.  This is good news, right?  This means all of his delays can go away, right? His clinical diagnoses of developmental delays, behavioral disturbance, and anxiety related to sensory issues?

Without a test for autism, I am left wondering what it means for my child to score a five on the ADOS when a score of eight puts him on the autism spectrum. Wondering what it even means to have enough questions about a child that the test is even done in the first place.

At the time of his testing, the ADOS score just told me that he did not have autism. That I just needed to be patient. That I needed to focus on all the gains he had made in the past few months and just chalk up his symptoms to some type of developmental blip. That I just had to accept he had some type of serious reaction to the birth of his baby brother, and to the fact that his Dad who had worked from home now worked outside of the home. That all of these things happened when he turned two.

What this type of ADOS score did not give me: any information about what I could expect for his future. Or any preparation for how hard I would have to work to get him support.

Because you know what an ADOS score of five means? It means the door slammed shut for getting services at school. It means we spent our time, money, and energy on private evaluations by occupational therapists, speech language pathologists, school psychologists, and mediation. It means I lost the battle to compel the school to provide my son with the services he needed. The only option I had left was to get a lawyer and sue my school district. I did not want to do that. By the time the lawsuit ended, it would be close to the time my son could enter the integrated preschool as a typical peer.

I decided to just wait. The waiting was not easy. I can tell you that, at the time, I felt like a freight train was running loose inside my body. I needed to focus on something positive, something other than the fact that my son scored five on the ADOS and if he had scored eight he would have been on th autism spectrum. My husband was a software developer and iPhone enthusiast, so I said "Let's make an app for the iPhone." The iPhone seemed like such a great platform for the visual supports, storyboards, and "maps" that helped Graham so much. We created -- and I focused -- on iCommunicate, the app I thought should exist. An app that could help my son, and children like him. An app that was discreet, that I could always have with me.

As I waited, there were turning points for Graham. His developmental specialist  was the one who started using visuals to support his sessions, and the occupational therapist (OT) recommended I use storyboards to help prepare his for transitions such as leaving the house.  We started drawing stick figures with arrows to explain to him that we were going to the playground or beach or wherever.  The visual supports and storyboards really seemed to help him: when he could see what was going to happen, it lessened his anxiety.

The OT also suggested designating a "safe" spot for him to retreat to, because he had been trying to bolt at every event or social gathering we attended, to get away from the activity. He seemed to appreciate the safe spot, whether it was a tent he could go into alone, or a camp chair placed away from the group. 

Another action that seemed to help significantly was to just cut back, way back, on what I tried to get him to do. At his one year Early Intervention (EI) evaluation I remember breathlessly showing the EI specialist all I had planned for the Fall: Monday we would go to the library, Thursday we had music class, on and on. I just thought I had to keep trying, I just needed to give him more practice. I probably seemed crazed. I hadn't slept much in those nine months, with a brand new baby in the house and a child I seemed to be losing, who had a bald spot on his head from pulling and twirling his hair from what we perceived as stress.

The EI specialist said, "you know, you don't have to do all that, you have been trying for the past nine months, and everybody is really stressed out." Graham's evaluation indicated that his social and emotional progress was tanking and he had made no gains in his receptive language -- he was 32 months old and scored at an 18 month social and emotional level.

When that specialist gave me "permission" to just stop, that is exactly what I did. I pretty much stayed home for three months. I just stopped pushing Graham to do things he did not want to do. If it wasn't a positive social interaction for him, he didn't have to do it.  Of course there were some social events we were obligated to attend, like Thanksgiving, but there we gave him his map, prepared him as best we could, and when he wanted to retreat to the upstairs, I let him.

I accepted him. I followed his lead. And it seemed to work. He went from getting worse and worse, to slowly emerging.

So today, almost two years later, I can check off a lot of boxes:
  • He attends birthday parties successfully - check
  • He did well at an integrated preschool - check
  • He is making friends - check
And then there are a few things I can't completely check off yet:
  • He can have a completely successful outing in a brand new loud environment - can't check it off yet
  • He does well in a new group of kids where an adult isn't directing the activity - I can't check that off yet, either
When the last school year ended, I had to decide what to do for this school year. Should I keep him where he is, in the integrated preschool with four teachers and ten kids, where he has made great gains and his confidence has improved? I struggled a lot with the decision. Why shake his world up? He was making great gains. He even started playing T-Ball in the Spring.  But he did not get much free play time at the integrated preschool. It was a seamless, predictable, teacher-led program. It was just what he needed the year before, but I felt he didn't have enough free play time, which is where he needed more support. I also wanted things to be a little less predictable. He needed to learn to roll with things, just a little.

On the other hand, I was very nervous about putting him in a situation where he wouldn't be successful. And I did not feel the weight of my belief -- that every decision matters -- until I did sign him up for that new preschool. The preschool where there are more kids and fewer teachers.  The preschool where the kids probably never spent a season at home because the outside world and socializing with others was just too much for them. But he did well, he was happy, though I was very nervous.

I still feel that pressure of making all the right choices for him. I still wonder about the choices I made two years ago with the help of professionals. If I didn't start supporting him with visuals and not forcing him to be in situations that were obviously stressful for him, would we be in a different place? I'll never know. Right now, I'm savoring that I took the leap and changed his school and so far, so good.

Why do I need to even ask questions like these?  I have to ask it because I still don't have concrete answers for why my son has an ADOS score of five,  why he's improving, or why he still needs support. I have to ask it because no one can tell me what it really means for his future that he was diagnosed with developmental delays, behavioral disturbance, and anxiety state related to sensory issues.  I have to ask it because I feel like every decision matters, even if I don't know what the results of that decision will be, or how it will affect his development. I have to ask because I have to try, have to ensure that all of those boxes get checked off. 

That is why a urine test for autism sounds so good.  Then I could check that box off, at least.