So much Hope!

I just sat here and watched the opening remarks from the Advancing the Futures for Adults with Autism Congressional briefing from November 13, 2010. Part two is taking place right now in DC. I found the tears rolling as I watched and heard the passion and drive of the many individuals in Washington and across the country. They are being proactive. They are going to try to prepare for the tidal wave of young adults with Autism that we all know are coming. The system is overwhelmed already, with little to no services for the adults that are already out there. I have always been terrified about where we will be when Austin is an adult. Today, I feel more hope.

We, as a community, and as a country have been hamsters on a wheel, running, scrambling to handle the sharp increase in the incidence of Autism, a disability that my Nursing Textbook said is RARE, just about 15 years ago. Strange, isn't it? From RARE to EVERYWHERE in a a decade and a half. That doesn't happen often! I am so glad that this crisis is finally being openly discussed. We have spoken of it often over the years as the numbers were rising, and the CDC was still counting. I am so proud to be surrounded by parents, siblings, legislators, providers, physicians,friends, and self-advocates joining in the discussion BEFORE the inevitable happens.

I remember back when Austin was first diagnosed. I was talking with a friend that has a son on the Spectrum who is now 18. He was about Austin's age at the time. She kept telling me about the crisis coming as these children were growing up. I remember telling her, I had to deal with the crisis that was happening right now...no early intervention unless you could pay out of pocket, the lack of awareness, the lack of a sense of urgency as the numbers continued to rise. No, I had plenty of time to think about Austin as an adult, I had to survive the here and now. My best friend, Tammie and I used to talk about it casually, joking in the manner that only we can. We each had the same plan for the boys in adulthood. WE COULDN'T DIE! We decided to revisit that plan when we had time. How naive...

Time...was far more fleeting than we knew. The years flew by as we did battle. We worked to grow a walk and increase awareness, along with friends from everywhere across the country. We worked hard with our Autism Community here in Florida to right a horrible wrong, and pass an insurance mandate to get some kids that Intensive Early Intervention while they were young. The whole time we thought it was too late for our boys, but we had to do something. As most people know from reading here, it is NEVER TOO LATE. Austin is doing great, with the interventions he SHOULD have had when he was little. He isn't little anymore, he is 5 feet tall and weighs 134 pounds, and he isn't 11 yet! We deal with horrible behavior, but he is learning, he is progressing, and we have great hopes and dreams for him again.The people in our district are buzzing about his miraculous progress!

Hopefully, the groundwork being laid today in DC and across the country will move fast enough. Hopefully the legislators that were asked by their constituents to attend this Town Hall meeting to learn more about the coming crisis listened. If all falls into place as it should, the supports that Austin and Matthew will need will be there in time. At the time when we can no longer pretend that "I CAN'T DIE" is actually a plan.

You see, Austin's BCBA believes strongly that he will always need his Behavior Assistant because of the severity of behaviors he learned to communicate with as he went untreated. He LEARNED that if I want the teacher and I hit myself, she comes. If she doesn't come for that, I can hit the kid next to me and she will come. If I don't want to work, I can put my head through a wall or hit my brother, and mom will put me in timeout and give me time to do what I want, and IF I am really lucky, she will be so distracted by life as a mom of 5, working and caring for all of us, she may just completely forget to come back and make me do it, and I can AVOID the whole thing. He may not have been telling us with words, but he was training us with his actions. When we would work harder at school, he would push harder at home. When we would work harder at home, his plan fell apart at school. We are now using a wrap around ABA approach, and he is doing wonderful!

The exciting part of his progress is that his BCBA sees this duo (Austin and his Behavior Assistant) going to Austin's college classes, learning about what HE CHOOSES to learn about, moving on toward the career HE CHOOSES, and eventually sitting in HIS OFFICE as he works and thrives as a contributing member of society.

I know this dream puts a great deal of pressure on the participants today. GOOD. The CDC numbers that were recently announced count children who were born through 1996. Austin was born in 1999, he still has not been included!  THEY ARE COMING! I truly believe we CAN be ready to help them all. The work  and urgency needs to begin TODAY!