Saturday, May 04, 2013
These folks need our help.
These camps fill up so fast, you have to plan your day around the registration opening- and hope they open not one minute early, or you're wait listed. Like us.
Why are they so popular? Because they make a difference. A huge difference. An oh-my-God-my-kid-has-to-have-this difference. For us, it was a breath my Joey desperately needs from his anxiety and depression, from the frustrations of just trying to be himself in a world that, despite our best efforts, simply does not accept him for who he is. A world that seems deliberately designed to thwart and frustrate him.
Why are they so important? Because they do this:
See that relaxed, smiling boy? We hadn't seen him in a while.
The program is entirely volunteer, and entirely free. That's right- free. They are serving families already overwhelmed with costs of therapy and care, therapies and interventions that medical insurance often sees as "not medically necessary" (because apparently being able to do things like speak, move, and interact are not medically necessary- what?) or "experimental" (translate= the insurance company hasn't updated their library of studies done in years, and are perfectly willing to completely ignore the progress and improvements your kid has made with an intervention) and the schools are too overwhelmed to offer. Even small accommodations can cost money. We've just had to put up a new gate to our yard because Joey figured out how to climb over the old one- that's $700 just so we can let him play in the back yard. Our house has double-key locks, we had to install them. We may have to install a security system just to keep Joey safe. We've been waitlisted for Project Lifesaver since August; we've had two major bolts since then (when he was gone for more than 20 minutes and we had to bring in others to help search for him, and he was found more than a quarter mile away) and several smaller escapes since that August incident. To get one ourselves? About $150 for a device, plus a monthly service fee. And even the best of these devices - downright cheap compared to the ones used by the police and Project Lifesaver- is a gamble for whether or not it will work properly. Compared to other families we see, we get off fairly inexpensively, too. We just do OT/social skills group and speech/language, plus these smaller interventions. We had to pay out-of-pocket for a round of vision therapy (that was AWESOME). But we're not on special diets or doing horse therapy or art therapy or music therapy or having to get a service dog. Joey doesn't have any attendants at home (except me and JoeyAndyDad and Grandma). We don't get respite care. All of those things cost money- a lot of money.
And no, there aren't huge studies to say this program makes everything all better, or any long-term improvements. But I can tell you, it makes the world a better place- even if it is just for half an hour, for one boy. A Joey-Boy.