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…).

PBS Autism Now

I finally got around to watching all the episodes on the internet. Lately I haven't been able to watch any evening TV show with any regularity, so this task has remained on my Franklin Planner's task list dutifully for the past few weeks.

Nicely done, PBS. I appreciated the honesty. I appreciated seeing no "recovered" kids. I appreciated the acknowledgement that we are at the tip of the iceberg of people with autism needing services. I appreciated the experts saying that yes, we know a lot more than we did, but there is still a ton that we don't know. I appreciated that they said that there is no one cause of autism. And I appreciated that there were no simple solutions offered, because those of us in the thick of it would confirm that nothing about diagnosing, researching, treating, and living with autism is simple.

One episode dealt with the lack of services for individuals with autism once they are over the age of 21. I will admit that while I am in a very positive place with our boy right now, this subject looms large and imposing. It's not even so much after 21 that worries me…it is what happens when Rob & I are gone. I say that I need to live to be about 120 years old, because I want T to have a full life, and if he lives to be 80 then I need to live to be 112 years old. I need to outlive him by just one day. That is the only way I will know that he's safe, that he's taken care of. We've put things in place – all the wills & Letters of Intent – but I still worry. And in this age of federal & state budget & service cuts, who can reassure me that he will have any services whatsoever?

My fear is that the numbers of people with autism will completely overwhelm the systems that are in place, and they will be seen as an impossible burden on society. If I spend too much time thinking about it, my heart actually goes into palpitations. So, I try to concentrate on today, tomorrow, and next week - maybe even next month. I know we need to have a vision for him, and it needs to be much more refined and honed than "I just want him to live as independently as possible and have a meaningful day and be a productive member of society…" No, it's going to have to be more than that. Because more and more, I'm beginning to believe there won't be anything for him. I am not usually pessimistic, but I think being overly optimistic at this point won't serve him well. We'll need to plan on having no help. And that way, if there are services in place, then it will be a pleasant surprise.

Communities are popping up here & there that are created for adults with developmental disabilities. They provide living space, work opportunities and supervision in an environment that caters to their needs. It has occurred to me that this sort of a place could be an option for our son. Those who advocate for inclusion are resistant to these communities, and I get that. But while I understand and support inclusion, I don't always believe that it works out best for absolutely everyone with developmental disabilities.

It's hard to look that far forward, especially when I've just tucked my little guy into bed…my little but growing guy that still requests "Goodnight Moon" and loves Baby Einstein, even though he turns 10 this summer.

I started this post writing my reaction to the PBS Autism Now series, and see where it took me? Well, the series got me thinking. These future issues are the ones that lay heavy on my heart, but it is a burden I carry without regret. This growing boy continues to amaze and inspire me, and Rob & I have done a pretty darn good job of putting our heads together and deciding what to do next – so far. I can't control the future that far out, but judging from how well T is doing, I do have faith that we will figure it out.

Insurance

We are really, really, really lucky to have health insurance that covers T's ABA full time. I always hold my breath when the EOBs arrive, despite several years now of invoices reimbursed. Only occasionally is there a bump in the road, and today brought a bump. For no apparent reason, insurance has decided that it will only reimburse partially. "Charge exceeds the allowable amount for this service" and "Charge exceeds fee schedule/maximum allowable or contracted/legislated fee arrangement." Odd, because nothing has changed from the previous invoices. Hourly fee structure changed back in March, and this is for an April invoice. Other March invoices, since the fee schedule change, have been reimbursed.

Sigh. Here's to hoping that it was just a data entry error.