Sunday, May 3, 2009

Our story part 10: Bitty's diagnosis

We started Bitty in speech therapy, but it was evident that he needed more than that to address some of his issues. I got back in touch with Early Intervention to schedule an evaluation. In addition to speech therapy (which he was already doing), they recommended occupational therapy and special needs instruction. We outlined our goals for Bitty in what I thought of as a "baby IEP."

The EI team also referred us to a child psychologist for a full evaluation and official diagnosis. I went through the M-CHAT (Modified Checklist for Autism in Toddlers) at home and found that Bitty had 11 of the 23 red flags for autism, plus 2 borderline, and he had all of the ones identified as "critical." (Note: the questionnaire isn’t a diagnostic tool, but is intended to help determine whether further assessment is needed). We had to wait a couple of months for the evaluation with the psychologist, but in the meantime we found providers and got his therapy going. He had therapy four days a week.

Meanwhile, Bearhug and Cuddlebug were in Kindergarten at the time and were both doing really well. They were in an autism resource program (the same one they are still in today) and it was working really well for them. They were each in a regular ed classroom (different classes) most of the day, with resource teachers in and out of the classroom throughout the day, and pull-out to the special ed classroom for specific activities (like writing or test-taking), speech, and as needed for sensory breaks. The program also incorporates social skills training which has been really beneficial.

School was out for the summer when I took Bitty in for his evaluation with the psychologist. I had to go in with him because he refused to go back by himself. They did a number of tests (or attempted to, Bitty wasn’t particularly cooperative). Then we went to another room where the psychologist asked me a series of questions and observed Bitty playing, and toward the end told me that Bitty had autism. I had fully expected to hear that, so I was a bit surprised at the grief I felt on actually hearing the words. It hit me like a ton of bricks, and I had a hard time concentrating on anything he said after that.

It was really hard not to feel despair with Little Bitty’s diagnosis. Unlike the situation with our twins, where we had been searching for answers for a long time, Bitty had had no issues until just a few months prior.

It was easier to accept Cuddlebug and Bearhug’s diagnosis because it didn’t involve accepting a change in them. They had always been autistic, and they were the same boys at the time of their diagnosis that they had always been. In Bitty’s case, it was different. Of course the diagnosis itself didn’t change who he was, but HE had changed. He hadn’t always been autistic. His behavior, the way he responded to us and others (or didn’t), was quite different at age 2 than for the first 15 months of his life. That was the part that was hard to accept. On some level, I think I was still hoping that I was just being paranoid, or that he was somehow just imitating his brothers (I know, that one was kind of an irrational stretch... after all, how could he be "imitating" things they had done before he was born? And how does one "imitate" being unresponsive like that? Especially when he no longer imitated anything except in rare instances with some serious prompting).

The diagnosis was simply confirming what I already knew in my heart. I guess I wasn’t quite ready to know for sure, but there it was. On the bright side, I could quit worrying and wondering and start focusing on moving forward. It confirmed that we were on the right track with his therapies.

I think one thing that really helped me hold onto a positive outlook was that by that point in time, we had seen Bearhug and Cuddlebug come a long way since their diagnosis. I knew that every child is different and that Bitty may or may not experience the same kind of progress at the same rate, but we were starting him in therapy a full year younger than Cuddlebug and Bearhug had started, and seeing their success so far gave me hope.

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Stacey on May 4, 2009 at 1:31 AM said...

It's a moment that most of us parents will never forget. Your family has a great attitude and I am happy to have found you to follow.

K on May 4, 2009 at 11:49 AM said...

Last year I was looking at some old videos of R and I just choked up
At 1 he compltetely knew what the main even in the room was ( mom taking his picture ) he had perfect following the gaze
I think regression is a real torment - I hoentsly would have moved onin my acceptance journey MUCH faster if I did not have the regression
Of course thought the reality is that our kids are making TONS of progress and there is much to be grateful for

Julie on May 4, 2009 at 5:15 PM said...

Thank you for sharing his story. I didn't know this about Bitty. (Catching up, here...) I know what you mean about pretty much knowing he has Autism, but it hurts so much to hear it officially. A therapist told me Daniel was "on the Spectrum" when he was about 2 1/2...but he was 3 1/2 before we got an official diagnosis. I had a year to prepare myself...but, it sure hit hard.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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