Monday, August 2, 2010

Therapy burnout

Alex has been in some sort of therapy since he was 6 months old. It started with PT for torticollis as an infant. He then began speech therapy at 18 months in his at-home early intervention program. I had no idea then just HOW LONG therapy would last. I was so naive, I really thought he would start talking and he would be fine. I had concerns but he was so loving, he smiled, he met his other milestones and I did not lay awake at night worrying. If anything, I thought maybe his IQ was a bit low and that was something that did not upset me terribly.

Here we are a few weeks shy of his 7th birthday and he is still in therapy. He receives OT and speech therapy. Over the years he has also had social skills group and RDI, but both of these were discontinued although we still follow the principles of RDI in our everyday life. However, we do not have the time or money to do EVERYTHING. And in case you are wondering, no, insurance does not cover these therapies. OT was covered for a while but only for a certain number of visits. I guess if you are not "better" in 30 visits, you are SOL.

Lately, I notice Alex resisting therapy. He does NOT want to go! I really can't blame him. Just how long is it supposed to go on? Forever? Because that is likely how long he will have problems with language and sensory processing - forever. Will I be dragging him to OT when he is 12? 15? 20? God, I hope not!!

I am waiting for some sort of "sign" that it is time to end therapy. I don't know what that sign is. Maybe the therapist saying enough is enough, maybe some dramatic breakthrough in language development or sensory processing, maybe a teacher saying "there is nothing wrong with him", maybe a sudden slew of new friends....SOMETHING! I think it is more likely I will need to listen to Alex himself. He is already making it clear he is tired of therapy.

What keeps me going back?? Fear, plain and simple. Fear that he will miss out on some new breakthrough or that stopping will be harmful in some way. Fear that his development will slow down or even stop if we end therapy. In short, he has been in therapy so long, I can't imagine him not going, not working, not being tested regularly, not having these therapists be part of his life.

I have spoken to the speech therapist about some updated testing on his expressive and receptive language "just to see where we are." I also would like to have testing done on his pragmatic speech. Perhaps these results will help me make a decision. The speech therapist is also going to work with him on his very ADHD-like impulsive questioning of strangers: he will ask people things like "Have you ever been to jail?" (of a grungy looking guy at the mall), "Why is your name on your shirt?" (of the janitor at school), "How old are you?" (of a very old man at the grocery store) "What is wrong with your legs?" (of a woman in a wheelchair). He does not go on and on about topics as described of children with Asperger's, but I think that might be preferable to the sometimes embarrassing questions he asks of complete strangers. If the speech therapist is willing to work on this then we can't quit yet....right?

I am full of self-doubt, not wanting to make the wrong decisions when it comes to my children's welfare. I can't help wondering if on this subject, Alex is far wiser than me...