Wednesday, June 9, 2010

Hurry up and wait...

Does anyone else get frustrated when you finally get a diagnosis or an evaluation with recommendations and then all falls silent. You finally get yourself up on that big horse ready to gallop, and everyone else seems to have put their horses away in the barn.  What is up with that? 

I know my boy needs more occupational therapy. The expert team of medical professionals that evaluated him know that he needs more occupational therapy. But still we wait. Waiting to hear if our insurance actually pays for the therapy or just the evaluation. Seems only logical that if you are willing to cover an evaluation to see what a child needs, that you would then cover the needed services that are indicated by the very professionals who are in your network. Wouldn't it? Or am I just daydreaming about what should be rather than what is in the world of medical insurance these days? 

I've read the books (all but one) recommended to me by the occupational therapist who did the evaluation but I can't get us in to see her for the work. They clearly tell you that a sensory diet is a good thing, but that you should work with a professional to get it just right for your child's particular needs. 

And so with Summer break upon us, we are waiting... for the genetics referral, for the occupational therapy answers and scheduling, for the ear, nose, throat and orthodontist visits (scheduled for August). I'd really like to move forward but I can't do it all alone.

In some bizarre way, it seems it would be easier if we did have anxiety issues since mental health parity is now the law of the land. Or maybe that is just another belief to which I'm silly enough to cling.  Being the parent of a kid with SPD is a lot of waiting and trying and waiting some more and trying where you can to move the entire process forward to get things done for your child. Maybe it is time for me to try communicating with the OT by email again... maybe we can come up with some sensory diet items to start sooner than the therapy itself. I'm not very good at waiting!


  1. I think you are doing a wonderful job being a mama tiger (or grizzly, as Sarah P. says) in getting help for your children. My nephew has pretty serious spd issues too and went through therapy. He's 12, and each year he adds a new food or two to his menu, and still has clothing issues. After his diagnosis we came to realize that my daughter, a "Picky Eater," probably has the same diagnosis, to a degree. She's nineteen now and functions just fine, living on mostly carbs and chicken fingers. Hang in there, hang in there, it will get better. And thanks for sharing! - Val

  2. I feel for you and the wait. I don't know why it seemed relatively easy for us to go from our pediatrician recommending a speech evaluation, to getting one, to getting regular ST. The folks at the therapy place called our insurance, got the ok, and scheduled us right away for visits. It should not be more difficult that that! From there, having a really great ST whose daughter has SPD, it was she that picked up on my son's SPD and we got him into and OT eval, and regular OT sessions. My heart goes out to you.

  3. Thanks Val for your positive thoughts. I am amazed that you could get insurance Mariner2mother to cover speech therapy... we have a great potential speech therapist but they won't even deal with our insurance company cause they never pay since they say it isn't medically necessary. I'm really worried that is the problem -- what is holding us up -- on the occupational therapy as well. I really want new insurance. Not a fan of United Healthcare at all.

  4. United Healthcare says that speech therapy is not medically necessary- I wonder if you can prove otherwise to them. I have Uniform Medical Plan (through WA state).

  5. Well we won't have United Healthcare much longer as the recession has destroyed my husband's start up company job... so we shall see what is next.