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Tuesday, April 2, 2013

well there goes the neighborhood, and the ABA

Jonathan is doing well, maybe too well. His progress has put us at a "classic" Autism crossroads. This crossroads is one I had serious doubts we'd ever reach so believe you me I'm a bit stunned/elated/devastated to be here. We are being weaned off from services. This is the new Autism crossroads, doing well enough to be weaned, terrified to be without support.

Jonathan's hours at his last ABA insurance approval period in December were cut. Of course I argued for more hours but in all reality I knew he didn't have the behaviors to justify the hours. Jonathan is losing his Autistic behaviors. His ABA at this point is centered around intraverbals, fluency and other ABLLS skills unrelated to education (for insurance purposes they cannot teach educational skills that is the educational systems burden and trust me that is a blog for another day). His "behaviors" or lack thereof are tracked via data during his therapy sessions.

Jonathan's therapy team uses a testing system called the ABLLS .
imagine this, with the majority of the boxes filled in :)
The ABLLS is essentially a list of skills covering ages zero to eight. Jonathan is seven and has nearly mastered all the categories' his therapist can ethically cover in therapy. One of his therapists that I truly trust has told me she thinks he will masters the remaining skills by the time he turns eight. Jonathan also isn't terribly behind his NT peers as far as school work. Jonathan at 7 is doing Kindergarten work. Since he was a fall baby that means he's only a year behind. Next school year they agreed to retain him. He'll get another shot at learning those first grade skills. This will put him back a year but he'll be on skill level and his teacher and I have agreed to keep him on a regular diploma.

To change his statistics (screaming, behaviors etc.) with therapy I decided we should start doing in home therapy. When you change the setting of his therapy to a more chaotic distracting arena his behaviors tend to flare. Also this way I can learn how to do the therapy with him and he can replicate successful skills better in a classroom environment (which in a way is like our home, distracting, noisy and not one on one unlike the church he was doing therapy at). 
these two therapy environments.

There is a pretty drastic performance difference between

One of his newer more blunt therapists said to me, "ultimately the parents are the therapists. Even if you are doing it right seventy-five percent of the time that is still seventy-five of the time vs. zero percent of the time." I've always been afraid of doing it wrong and making his behaviors WORSE, which frankly when we started ABA was a terrifying prospect. I've always done everything I could to support the therapy team. I've always read to him, taken him out in public and tried my very best to follow their advice. After all ABA is a resource not to be wasted. We are thankful for our services and want to get as much out of it as possible for Jonathan.

Well now things are different, it's time for me to learn. I don't know why the therapist's advice stuck this time, why I got it this time. I've heard that phrase a thousand times, "the parent is the real therapist." I used to hate that saying, it felt like a brush off. It was the catch phrase of a million different agencies designed to cut cost by cutting therapy ours. Our circumstances are different now obviously. I now have a fuller understanding of ABA after having seen many, many, many hours of it. Maybe it is that I'm less afraid, maybes it is that we found an ABA company and therapy team willing to invest in us and we shall invest in them in return.

Our next ABA renewal will cover maintenance therapy and parental teaching. It will begin in August (of this year). I always knew ABA couldn't last forever, supposedly our insurance plan only covers three years of ABA maximum and we are coming up on our second year this summer. Its a bit strange, somehow I feel success has crept on us a bit too soon for my liking .

These very measurable goals speak to the depth of his recovery. BUTTTTT I worry. Jonathan just isn't verbose. He still doesn't talk or act like an NT child. He struggles for words when asked direct questions and defectively talks about his current obsession (right now it is bugs and reptiles) when
I don't want to count to twenty today, so what is a Goliath Bullfrog?
asked things he doesn't want to answer or cannot answer. His struggle for words is written all over his face. His younger brother is a talker and I unfairly compare them, not out of the desire to change him but to give him his best possible chance at an independent life. To a degree that fate is determined here and now, with this talk about his diploma talk, with his inclusion classroom. It still amazes me that children are given up on at any age, let alone when they haven't made it out of elementary school but it is painfully common.

So again, that reiterates my point, this is dilemma we are happy to be in but nervous about. I guess like anything else in our lives, we'll see. This may mean putting midwifery school off for another year but we've fought this hard for so long. As always like DH says we will make it work for Jonathan.

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