Yesterday, we started a full-time ABA program with my son, Austin. His BCBA, Lauren, came to the house and started training his new Behavior Assistants, Miss Brynn and Miss Nicole. When it came time for Lauren to leave, the girls stayed for an extra two hours. Within five minutes of Lauren walking out the door, Austin started "testing" the girls. He slammed his head into the wall in our hallway. On a whim, I posted it on my Facebook page, to let people see the reality of what happens when ABA is started much later than any Physician would order. Well, I received so many comments and requests to keep people informed regarding how Austin is doing, that the idea for this blog was born. Welcome to our Journey, now let me take you back and give you an abbreviated version of our first seven years living with Autism.
Our 4th child, and first son, Austin was diagnosed with Moderately-severe Autism on May 11, 2002 at 11:29am. Sorry, but the date and exact time are burned into my memory. I was four months pregnant with our fifth child, also a boy. We jumped on this whirlwind after that of specialists, therapists, you name it. They were telling me he needed at least 25 hours per week of Behavior Therapy, and also Speech, Occupational Therapy, etc. It was a crazy time. i started trying to make appointments, and soon discovered that the insurance I had through the Hospital that I worked at (as a Critical Care Nurse) would not cover his therapy BECAUSE he had Autism!
I was shocked! I even asked if he was 95 years old, in a nursing home, with dementia and he had a stroke, would they cover it? I was told, "Of course", I replied, "But my almost 3 year old son doesn't need to talk?" They actually told me that it wasn't rehabilitation because he never had the ability to speak (also not true, as he regressed at 18 months). The clincher, the "kind" woman on the phone also added, "Besides, it's proven that these kids just don't do that well!" BIG MISTAKE...I WAS LIVID and my brain was whirling a mile a minute to find a way to help my son.
I learned that Florida Kidcare would cover his Speech and OT, so I dropped my insurance for 6 months (I also had to drop my hours at work so that I was part time, or I wouldn't qualify for Kidcare). Needless to say, this started a financial drain on our family, but we had to try everything we could for Austin!
I applied for SSI for him, and was told that he wouldn't qualify because we made too much money. I had heard that Medicaid comes with SSI, and falsely heard that Medicaid would pay for Behavior Therapy. My husband and I did the math, and what it came down to was I had a job making about $30,000 a year at that point, and the amount of Therapy Austin needed was about $125,000, so we did what we had to...I quit my job, pulled the baby out of daycare, and got SSI and Medicaid for Austin. That's when I found out, NO, they don't cover Behavior Therapy for Autism, however if one of my other kids started acting up, it would be covered. My blood started to boil, but I am a fighter, so I started fighting!
By this time, Austin was in the school system. GREAT, another fight on my hands! So, I began to learn everything I could about IEP's (Individualized Education Plans), and IDEA (Individuals with Disabilities Education Act).
Fast forward to the present...Austin has never been able to get Behavior Therapy, we just couldn't afford it. He is now almost 10. He is 4'8" and 108 pounds. He is very self-injurious (sometimes punching himself more than 100 times a day), aggressive (mostly toward his little brother, Adam), and can put his head through the wall when angry.
The final straw that got us to the point of having Emergency Intensive ABA services was when Adam, age 7, went to the Dollar Store. He came home with Armor, and I thouoght, how cute, he wants to be a knight. He corrected me, he bought the armor so that it wouldn't hurt when Austin hit him. That was it! I HAD HAD ENOUGH!
I picked up the phone, called the Agency for Person's with Disabilities Director and told him exactly how we were living, and that I was desperate, and his department did NOTHING to help us! The ball started rolling then, and after a flurry of phone calls between Tallahassee, here, and our ABA Provider, we arrived here. He is approved for 4 hours per day of ABA after school, and 8 hours of ABA on every non-school day including weekends!
As I said, we started our journey yesterday. The picture shows where we are right now. Let's hope today is a bit better...
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