Friday, May 22, 2009
Alas, our dreams ... at least for now... are dashed.
But that is ok. Instead, we were referred to a speech-language pathologist who used to work for the State many years ago, and now owns a private agency in the Cities. According to the Important Person at the Department of Health, she is one of the leading experts in our area on toddlers with significant speech delays, and has very extensive experience with apraxia. Since so many people have been hinting at that, but no one has been able to definitively say that is what is going on, it has been eating at my craw. So, we decided to go for it and see what she had to say.
The eval was TWO HOURS. Actually, to be honest, it was the best eval we have had. She asked all the right questions, made great observations about Jonathan... even keying into some of his more subtle skills and abilities... and listened to both him and me. It was great.
And her opinion? Well, that is complicated.
She does indeed believe that at least a large part of Jonathan's issues are about motor planning. She explained that motor planning issues (like apraxia or dyspraxia) are not like the issues that adults have after a stroke. There isn't just one area that is damaged necessarily. On an MRI, the brain may look totally normal. But the way the different areas of the brain "talk" to each other is disrupted. In other words, these issues are often the result of discoordination of the areas of the brain responsible for speech and motor movements. Getting these areas to work in consort is where the difficulty lies. Because of this discoordination, the child does not interact with speech and language the same way as other children. Frustration ensues, and it can either manifest as shutting down, disconnecting, or acting out. Often these kids also exhibit poor motor coordination in other areas. They may be slow to sit, to walk, clumsy, or resistant to doing certain motor tasks. Much like my boy.
However, she also offered that he may also have some underlying receptive and expressive language issues in conjunction with these motor planning issues. Since apraxia... pure apraxia... is quite rare and difficult to diagnose, she was quite clear that his story is undoubtedly not done yet. But she was firm in that his therapy needs to be very focused on his imitation skills and getting him consistently making sounds, especially on request. She promised a detailed write-up with very specific suggestions for treatment, and asked us to stay in touch and call if we have any questions.
She was also quite clear that... while the "spectrum" could certainly still be in the mix.... she felt that much of what she was seeing from him really pointed to his language delays. She was firm in saying that unless there was a dramatic change in his behavior.... greater social withdrawl or sensory issues... that a specific autism evaluation might not buy us much but a "label". And since we already have services, and will continue to have services given the extent of his language delay, there is no need to impose any other label on him. Useless, actually.
It was one of the best evals that we have had. I am not sure she told me anything more than what I already suspected, but I do feel like she really understood Jonathan and was able to articulate his needs. It will take me a while to digest what this might mean...
I was... am... impressed.