Saturday, March 5, 2011
Lu's Progress and IEP Battles
So with all of this progress on the feeding and recovery front, we decided it was time to try to take Lu back to school. Especially since her ABA trained one-on-one aide was scheduled to leave Feb 28th and we needed to get a new person in place. Our preference would have been to get one of the home-based tutors into the classroom with Lu because they all have a good and long behavioral history with Lu and they are all well trained and well aware of the new medical issues. I would also feel so much safer leaving her with them than with a new stranger who she is not used to. But none of the tutors had Mon, Tues and Wed afternoons free. We thought about one of the tutors doing Mon and Wed and me doing Tues, but both the teacher and Dr. G didn't think this was the best idea. It took us ages to get her used to me dropping her off every day. Me staying every other day could really confuse her. Then the school said they had someone they wanted to hire. I was impatient to get someone in place so they could shadow the current aide and get trained by Dr. G who very awesomely agreed to fly out almost immediately to do the training. The school assured me this new person was really great, had experience, was great with kids and they would send her resume. I had some misgivings, mainly about a completely new person knowing how to safely handle Lu's flop on the floor tantrums without injuring the new button. And about toileting since she still isn't independent in the bathroom. Potty training has been really tough (especially with all of her GI issues) and throwing a stranger in there could be a big problem. And I was worried about a new person being able to get Lu to comply with doing meaningful and worthwhile work in the classroom.
I got the feeling several times as we went through all of this that some of the people involved were a bit baffled about us kicking up such a fuss about who her aide is and how well trained they are for the last three months of a preschool class, but the thing they don't understand is that right now Lu is in a developmental window of opportunity that will pass and will never be open to us again. Numerous peer reviewed and reproducible studies have shown that the lifetime trajectory for kids who are able to attain real functional speech before the age 5 is vastly different than for kids who don't. The kids who talk by 5, those end up being the ones who are often called 'recover' and who are able to go to school and learn and have many more options for their future lives. So every day, every hour right now counts. And that is why we have pushed in all our chips on this ABA program, on finding the right aides for her, on trying to give her every tool possible to help her gain skills and make progress. That's why we are fighting so hard for our baby.