Friday, May 20, 2011

He's writing

A few days ago, T’s ABA consultant came to our house to discuss two things: 1) his upcoming move to the older kids’ center and 2) his new writing skills!

Handwriting has been a long process, and it is still underway. As I watched T write on Wednesday, it occurred to me that I very well may be witnessing the beginning of his being able to communicate with the outside world in a way that may be understood. His Consultant gave him a piece of lined paper and asked him to write his name, which he did. “A little sloppy, but I’ll take it for today”, she said. And sloppy as it may have been, there it was: his first and last name with a space in between, and legible.

Next, she told him that he’d be writing the word “snake”. Letter by letter, she asked “what letter sounds like...?” and then said the sound: “ssss” for S, “nnn” for N, etc. Letter by letter, he repeated it back to her and then wrote it. When he got through all five letters, happy shrieks ensued and lots of tickles – he was SO pleased that he did it!

If that wasn’t enough wonderfulness, she turned over the paper and asked him to write the letter that sounds like “ah”, then “uh” and “eh”. He missed the “eh” at first (wrote A, but when “eh” was repeated, he got it right).

I’m tempted to say something like “MAGIC!!!” “UNBELIEVEABLE!!!” And yet, neither is true. This was not magic. It is the result of the right therapy for him and over 3 years of dedicated, hard work on his part and theirs. So while I watched in wonder, and as I hold those amazing examples of his work in my hands, I stand in awe – and cheer on one amazing kid. I can’t wait to see what he’s going to show is next.

The older kids’ center is one of the first of its kind in the region and perhaps even in the country. It is an ABA clinic designed for the needs of youth with autism ages (approx) 8-18 years old, perhaps even older. As one of the PhDs who consults there has said, “In spite of all that we’ve done and all the good work and therapy that we’ve done, here we are.” Meaning: despite all the intense therapy, this is not a cure. There is no cure. And some kids, as they age, still require direct, small group instruction with supports in place so that “behaviors” don’t interfere with learning. T still requires this, in our opinion. Despite all this work (for which we are eternally grateful) if he works in a small group, he eventually fades back, withdrawing his attention from what is going on so he can flip his fingers or a plastic bracelet. And we have witnessed it ourselves: this beautiful boy fades off, not causing any interruptions or acting out, and he is ignored due to the more demanding needs of the other students. He is, essentially, left behind. Clearly, he is able to learn, and has the right to do so in this most appropriate environment.

I admit to being relieved that his individual program will be more weighted toward academics, with a healthy dose of “life skills”. The older kids’ center does write programs for each kid there, and some kids’ programs are essentially these life skills – and thank goodness that it is available for them. With these writing skills and the thinking that he clearly is doing, he begins a more academic program in two weeks. I am pleased and so happy for him. Long ago, when he was about 2 years old, I was able to give up mentally the cursed developmental charts with their typical age timelines. I threw them out – the age timelines, anyway. Something shifted in my brain, and I was able to be at peace with thinking that those blasted timelines don’t matter for him anymore. All that mattered is that he meets those milestones eventually - in his own time, with the right supports in place. And here we are, and I still believe that. As long as he continues to progress and learn – that is all that matters (well, aside from him being physically healthy, and having his emotional needs met, and knowing that he is loved like crazy…).


Cristin Miller said...

Yes, yes, yes!!! It is so not about the timeline, it's about the learning and the loving and taking things as they come.

Sherry said...

I haven't visited for a long time but I am glad to stop back and read your blog. You are an incredible mom. I'm wondering if the music therapy is still going well. I would enjoy hearing an update on that therapy.