What about more therapy?

Today I was asked again; "What about more therapy?"

It is always accompanied by a plea in a parent's eyes. So much behind the question that remains unspoken behind the words. Sometimes there is an extra edge behind them. I met this little boy and his mother today. They had lovely support, Grandma and Grandpa had moved close to help, but it is never enough to calm the guilt and the drive, the frustration and the futility. He is a beautiful little boy, with a diagnosis that required not one, not two and not even three hyphens but four. I think that had I been his mother I would have said "He has Vegemite Syndrome" or some other easy title. I think that if a diagnosis can't be pronounced by a parent without medical background, it should be renamed.

But I digress. He was beautiful. But he had that look that you recognise after a while. He didn't really look you in the eye, but would if helped. He was floppy but could still walk and climb. He didn't speak at all. Then there was Mum. She loves him so much. She talked of the 'therapy' time they spend each day and how she has trouble 'engaging' him now. She wanted more ideas, more interaction from him and more time. She wants him to be 'better' so badly, because she loves him and hates seeing him hurting. Then the big question "What about more therapy"

I see a child, a family, that just need to take the stress level down. I see a child that no amount of therapy is going to 'fix' and who loved to play with me, and who never knew that it was working him hard too. I see the tears in Mum's eyes as she asks about therapy. It is so hard to remind her that she is strong and that she has been the one that has been able to strengthen him. It is so hard to convince her that she is brave enough to continue. It is harder still to convince her to try to forgive herself. To not wake at night thinking about the things that she should have done that day, or the therapy she had missed. The internet talks so much about the window of treatment for early intervention and this Mum had assumed that at the 4th birthday the window slammed shut and from there on that was where it all ended. I almost spilled her tears by just assuring her that the window doesn't slam. I tell funny stories about learning things as an adult and the tears recede a little more. I hope that her stress level went with it.

I wish that I could find the pill that helped all the little kids out there. The kids with diagnoses longer than there own names and the ones without a diagnosis. I wish it was just about more therapy. I wish that I could stop the relentless decline in function and the tears in parents eyes. I just wish that it was as easy as the question about therapy. All I can do is love all those kids out there and hurt for their parents.