I have a story to tell, but first, for the sake of my friends that live outside of Florida, I will explain our system in the shortest way possible. Florida has a Medicaid Waiver for Developmental Disabilities. This waiver includes very strict definitions of the following disorders: autism, cerebral palsy, Down syndrome, intellectual disabilities, Prader-Willi, and spina bifida. This Waiver system is overseen by the Agency for Persons with Disabilities (APD). According to their web site, “the Agency supports Persons with Developmental Disabilities in Living, Learning and Working in their communities”. Remember that phrase, as you will soon realize it is actually kind of funny, but you haven’t heard enough yet.
When our children that qualify for the Waiver, in the case of autism, are diagnosed with Autistic Disorder by a psychiatrist or a psychologist, AND have reached their 3rd birthday, they get to go on “THE LIST”. You won’t hear about getting on “THE LIST” unless you find a group of parents to tell you about “THE LIST”, therefore many children get on “THE LIST” much later. We were lucky…I met the right people who told me to get on “THE LIST” and did when Austin was 3 ½. Silly me, I took him to a neurologist who diagnosed him with Autistic Disorder, oops. I needed to get in with the ONE Psychiatrist in my county to get the diagnosis that they would accept. So, February 13, 2003, we began “WAITING”.
Another lucky break came in May 2007 when “THE LIST” actually moved! (It was the last time it moved at all, other than in cases of CRISIS, which comes next). Austin was now ON THE WAIVER! We were so excited, we called everyone we knew! He was finally going to get help…wait a minute, what? You can’t find a BCBA (Board Certified Behavior Analyst) in my area? No help until a full assessment is done? What? We had one BCBA assigned, he never showed up, he stopped being a provider, then we got another for a few months, but after driving three hours to see Austin for three hours per month, he decided to stop coming here.
I nagged our Support Coordinator, yet another oxymoron here in this case anyway, as she provided me some phone numbers and I attempted to coordinate his care. As time went on, Austin became bigger, and his behaviors became more challenging. He had a certain pitch that he would hit that would cause his little brother Adam to dive underneath my desk to hide from the hits that were to come. It was not a fun time.
Finally, Austin’s little brother brought home plastic armor from the Dollar Store, not to be a knight as I first thought, but so that the hits from his brother wouldn’t hurt so much. THAT was the moment that I picked up the phone and CALLED TALLAHASSEE! Actually, not just Tallahassee, I called the Governor’s office. It was a whirlwind for the next two weeks of BCBA’s coming in and evaluating Austin, paperwork flying, a new Support Coordinator, and finally ABA! A lot of ABA, and you can read about that at the start of my blog series. Sorry for some repetition, but I wanted you to understand where we were, how we got here, and how much crazier this story can get from here.
But, I digress. Our children live 24/7 (yes, government, agencies, leaders, school officials… THEY TRULY DO). He also had a school environment from the time he was three. I fought constantly with the school district, trying to get him help, telling them he was brilliant, he just couldn’t talk. He needed Applied Behavior Analysis, ABA, and he needed it right away. Our school district could not “dictate methodology”, they believed in an “eclectic approach”. I actually fell for that, and then spent years leading up to now, with him on Hospital/Homebound with Behavior Assistants trained in ABA helping to fill his head with the knowledge that he didn’t receive in the first seven years of schooling. He was in 4th grade and moved into a General Education school in a self-contained classroom with a team that could not have been better if I had picked them myself. There are a few stories I wrote before about them that you can refer to.
The culmination of his three years in this amazing place was Austin taking our state exam, the FCAT, start to finish with no modifications, only accommodations. He came home to tell me it was “FUN” and “EASY”. He didn’t even have a single tantrum. He was amazing!
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| 5th Grade graduation, next to his "peers" |
The grades for the tests came back. And unfortunately, the grade he was given failing grades for the subject matter. Those grades belong to his district for not teaching him those first seven years! Austin deserved a PERFECT SCORE, because not only did he take it, he did it like he had been doing this his whole life!
So, given the fact that Austin is now out of fifth grade, and had to move on to sixth, he is a much bigger boy with much more severe behaviors mainly due to his side and the dreaded “TEENAGE YEARS”. Homebound seemed to be the only answer to meet his needs with the ABA that has proven to be the key to teaching him, and yet the ability to handle his behavior without disrupting a class or endangering classmates. That catches you up to how we got here…
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| And, next to his Principal and Vice-principal! |
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