Wednesday, August 10, 2011

“Therapy Traffic-Controller”

This is the week we have been waiting for. In-home ABA therapy started this week. (ABA stands for Applied Behavior Analysis). We tried it in Virginia, our friends and family will remember. It helped Lilli more than anything else. But it was expensive. It costs thousands of dollars. And for anyone who does not know much about this, there are many, many parents of kids with autism who scrape up every dime and take out loans to get this therapy.

ABA therapy is what the doctor recommended to us 3 years ago, when Lilli was diagnosed at the age of four: "30 or more hours a week of ABA therapy." And no, it is not covered by insurance. Now ask yourself how come a doctor recommends a therapy that is so difficult to get, but has such great results? Why isn't this ABA therapy widely available to kids with autism? A mystery and a problem. I discovered it is even a "taboo" term in some public schools. They do not want to pay for it, I guess. (Shhh! Don't talk about it and maybe the parents will never find out about it!) But here in South Carolina, you can get it for free through a waiver. You fill out a ton of paperwork and get on a waiting list for a few years. And now, here we are at the top of the list. WOW!! I am so excited about it. It took a few years but we finally got it. Lilli will get the therapy until she is ten. Then she ages out of the waiver program.

This is definitely a life change for me. I need a new job title. I will morph from a "stay at home mom" into something more. There is a list of people that will be coming into our home every week to work with Lilli from 9am to 5pm. A lead therapist. A line therapist. A homebound teacher from the school district. Occasionally, the supervisor for the therapists. And of course the new nurse, who I started training today. And occasionally, her supervisor. I feel like a…traffic controller of some kind with all of them and the three kids. Josh, Mr. Social get in the middle of everything, is a tough one but he does still nap. Chloe must be so confused. I have to keep telling her that these people are here to work with Lilli, not to watch her "Nutcracker Show" or "Disney Show" or whatever show she is putting on. She runs back in her room and puts on her prettiest dress up princess outfit and tries to get their attention by dancing around and talking about Disney World. I have to keep Chloe and Josh occupied and away from the therapists. By the time Josh goes down for a nap at noon I am sweating. It's only been three days and already I have eaten less and I am mentally exhausted from the additional multi-tasking. You would think I would be getting a break while other people are working with my daughter. Mmmm… not really.

I have so much hope for the coming weeks and months. We have goals set for Lilli. We have great technology provided to us from the school district. We have a crazy, 9 to 5 schedule of people working with Lilli every day. We are digging in and we are getting ready to see how this will help Lilli.

I will just need a little more coffee and some protein bars, that's all.

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