Sunday, June 22, 2008

Autism Adventure: Part II

After our Kindermusik disaster, I pressed our pediatrician further with our concerns. And he continued to dismiss our concerns with assurances that Ryne was fine, and it was too early to be worried about anything. This went on for the next six months until we moved to 45 minutes away to the blue house. We found a doctor closer to our new home, and he seemed much more receptive to addressing our concerns. The problem was that he didn't really seem to know how to go about doing that.

Our new doctor suggested we have an evaluation done at the children's hospital, but when we tried to do that we ran into insurance problems. So he instead sent us to individual specialists. The first was a behavior specialist who didn't seem to offer anything useful. She seemed annoyed that Ryne was climbing all over her office, but said it was too early to diagnosis ADHD. Ironically, she said he didn't have autism. I remember thinking, "Whew! Not exactly sure what autism is, but glad he doesn't have it!" She suggested we get his hearing tested.

The hearing tests didn't reveal any problems either, but they were also having a hard time doing the testing because Ryne was not very responsive or cooperative. So they suggested we go to the speech and hearing clinic at the children's hospital. Based on our previous experience in trying to get an appointment there, we figured that would be another closed door. But, go figure, we discovered that even though the hospital would not take our insurance for a full developmental evaluation (which would include a speech and hearing evaluation), they would accept our insurance for just the speech and hearing. The earliest appointment we could get was three months out, but it still seemed like the best option.

During the time we were waiting for his appointment, I read a book titled, The Out-of-Sync Child. I had actually bought the book over a year earlier because a mom I met was telling me about her daughter's extreme sensory issues. After listening to her, I thought Anna might have some sensory issues as well. But life got busy and I never read the book. One day I saw it on the bookshelf and wondered if it might give me some insight into Ryne's behavior. I didn't even get through the first chapter before I realized I had hit the jackpot! This book was describing Ryne in perfect detail. I was so relieved to have a name for what we were dealing with: Sensory Processing Disorder. The only problem is that the book never mentioned speech delay as part of sensory processing, so I was still puzzled as to how that fit in.

Finally, the day of our appointment with the speech and language pathologist arrived. Ryne was now 2 1/2 years old. I think she knew within the first five minutes that Ryne had autism, but she was not allowed to say that. Nevertheless, the evaluation was very revealing and helpful. Most of Ryne's language skills were in the 12-15 month range. Pragmatics were at a 6-9 month level. He had 15 words in his expressive vocabulary, almost half of them being the names of his trains or other words related to trains. Even with 15 words though, he was rarely speaking. And he was still going through the pattern of losing language.

The speech pathologist then recommended we call our Regional Center right away for a full evaluation. This was a free service provided through the Department of Mental Health. We were able to schedule an appointment for just three weeks out. If our doctor had sent us there in the first place, we could have had a diagnosis six months earlier. Five minutes into the appointment the psychologist said without any hesitation Ryne had autism. He explained very clearly all the characteristics of autism. He diagnosed Ryne with moderate to severe autism, explaining this was not necessarily due to the severity of Ryne's autism, but rather because Ryne displayed so many of the characteristics of autism.

It was a very calm experience. No tears. No grief. Just relief. Relief that we finally had the full picture, that it all made sense, and most importantly we could start doing something to help Ryne. A lot of people had been praying for us through this process, so I'm sure that's why we didn't fall apart that day. We had a real sense of God's peace and control.

Surprisingly, the psychologist mentioned we should look into a gluten/casein free diet and gave us the names of a couple of doctors that could help us in that area. Many parents of newly diagnosed kids go months before hearing anything about biomedical interventions (or at least they did back then).

So now we had a game plan: Ryne would receive speech therapy twice a week, occupational therapy twice a week, and something called special instruction (and to this day I'm not really sure what that was supposed to accomplish!). All these services would be provided for free in our home until his third birthday. We were very pleased and encouraged. I headed to the book store and bought a stack of books on autism.

Our autism adventure had officially begun.

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