Thursday morning I met with our OT and some of the DCBDD staff to talk about what progress Summy and Jack have made with the new model of therapy delivery. David had really wanted to be there, but had to work/stay home with the boys. The meeting went well and it really shocked me to watch the first tapes of the day the boys were evaluated. So much has changed. I shared my fears in the meeting that after the therapy burst ends, the boys will regress. I feel kind of greedy because I feel like with all the progress they have made, I want to do more. Next week they are on break and then we have 2 more weeks left in the burst. I know that when the burst is over, we'll be so busy...both with PT and possible speech evaluations, and also with school starting and getting "back into the swing of things." I also know we'll continue to do the things the boys have been doing in therapy at home. We'll be getting a trampoline, swing installed in our home, weighted vests and tons of other equipment. The boys will have a few more weeks of listening therapy. (6 weeks total) Also, they'll start a weekly muscles and messes class with "Cake" that should help to continue where we've been working. We'll also have evaluations at 3 and 6 months. Soon, they'll begin the intake process with the school district.
I worry though. (Geez, you know me, readers!) Will they regress? What will happen with the school district intake? Will one qualify for services and the other won't? The cost of two kids in private therapy could be enormous. Would our insurance pay?
I know I need to let what happens happen. I feel like I was asleep to what was going on with the boys, and now I've woken up. I feel like I want to go go go and tackle this full force. I know that's what we're doing, I just wish I could do more.
A girl recently posted on my message board about how some parents were taking their children to China to have stem cells injected into their eyes to help counteract a disease they had which would cause their kids to lose their sight. The treatements were not monitored and had little research to back them. Part of me understood the horror, part of me felt deep sadness for these parents, and part of me understood. As a parent, you'll do anything if it gives you hope.
I want to do as much for them now as I can. I want them to be able to have friends, play normally, and be happy kids as they get older and start school. I want them to enjoy the sand in their toes, the wind in their hair, and finger paint. I hope they can.