So Frustrated

I am pretty aggravated right now....we have been planning to have Tucker in ABA 10-20 hours per week this summer, to work on lots of things, like waiting, listening, and talking.

It took us a few months to find a consultant that we like, and then it took about 5 weeks for her to do the evaulation. She did that in three phases, one at school, one with Mrs. Joy at therapy, and one at home with Chris, Tucker, and me.  She is the consultant, but the people coming in for the day to day work at home are therapists that follow Amy's directions and take lots of data. Amy had two therapists lined up to work with Tucker, they were already well-trained, so they could start as soon as Tucker was out of school for the summer.  We were so excited, and thought it was too good to be true....well it turns out that it was.

About two weeks ago, we found out that one of the therapists didn't want to work here. She never met us, Amy thinks she just didn't have the availability. These therapists are in high demand, and they make good money, so they can really choose when they want to work and with whom.  So we thought about it, and decided that having one therapist would be good enough, and we would just work with Tucker at night and on weekends.  Well, last week, we got an email, out of the blue, that the other therapist had no availability.... (we have already discussed training family members and hiring them, the data shows that it doesn't work nearly as well...the therapists really need to be all-business and it doesn't work out well when the child already knows them as aunts or friends)

So here we are, two weeks into summer, with no one to work with Tucker.  It may not seem like a big deal, but Tucker has been in many therapies and we are all on board that ABA is our best hope for him to reach his full potential.  It was always out of reach because of the cost, but now we are able to afford some services, and Tucker is about to be on my new LSU health insurance which will cover ABA. I always thought that once we had the funds for ABA, it would be so easy to start a program.  Now I am realizing that we will have to hire brand-new therapists, put them through 6-8 weeks of training with Amy, and then hope that they are good at their jobs and stay on for at least a year....and by then school will be starting, and after school Tucker is really too tired for any ABA therapy....

Facing such hurdles to starting an ABA program due to availability issues just stinks! We had the same issue with finding reliable childcare for the summer. There is one local camp that accepts special needs kids, but we'd have to provide an all-day aide for Tucker as well as paying for the camp.  Plus he needs to be 6 years old for that camp, so maybe next year.  We just want somewhere that is structured, that has therapy, activities, and other kids, but is also safe for Tucker.  Well that literally does not exist in the BR area.  Not that it exists anywhere else, as I have never lived anywhere else.

Right now we are at an "okay" place with Tucker's summer, as he started 3 half-days per week of preschool today, and he was SO excited to go in today. His childcare aide comes in all day on Tuesdays and Thursdays, and drives him to feeding therapy and private swim lessons.  He is doing GREAT with the swim lessons, he goes three days a week-Tues, Thurs, and Fri. Chris took him on Friday and took lots of videos, Tucker is really and truly swimming. Chris and I find that so amazing, as we thought the first two-week session would be a power struggle between him and the swim teacher! There was no telling what odd obsession Tucker could have developed at the pool, but he gets in and really swims. He can swim about 3 feet underwater, which is about 4 strokes maybe.  My goal is for him to be able to keep afloat if he would accidentally fall into some water somewhere. Last summer he had no ability to sense danger, so he would try to walk into a pool at the deep end with no fear.  Now he looks for the steps and likes to be able to touch the bottom of the pool, but we want to be safe and know that he can swim no matter what would happen. We are going back to the beach next week for a four-day vacation, and I hope this time we spend all of our days in the water :) Not in the hotel! ;)

All in all, we are finding that Tucker really needs all-day stimulation to keep him from getting bored, and we were hoping ABA would be that stimulation.  Please pray that our situation all works out, because now that Tucker is 5 years old, we are even more insistent that we help him to be independent and give him the skills to deal with daily life. While it is so tempting to "take a break" from pushing Tucker, I want to look back years from now and know that we did everything we could to help Tucker.  And we all believe that ABA is a big part of that.