I think those outside the special needs community are fortunate enough to have a different, less jaded, view of the medical community than insiders do. I was talking to a young lady the other day who simply couldn’t understand why we just didn’t get Caden more therapy if that’s what he needed. You know, pick up the phone, make an appointment, submit it to insurance, and be on our merry way. Are you on the floor yet? I almost fell off my chair in hysterical laughter over the absurdity of how simple and logical and full of common sense that all sounds until the sobering realization hit me that it really should be that simple.
In reality, as many of you know, many research proven “common” therapies like speech, occupational therapy, and physical therapy among a host of others are either not covered by insurance or the number of visits is severely limited. Then there’s the reality that the number of service providers is disproportionate to those needing services and that even if you can find a service provider, without insurance coverage most of us simply can’t afford to pay the therapies out of pocket. So my astute conversational partner asked the next question: why don’t we get disability for Caden—surely that would take care of the financial aspects. Again I almost fell off my chair in hysterical laughter until I realized how simple and logical and full of common sense that does sound and sobering reality once again hit that it really should be that simple.
In reality, Caden was determined by the state to be disabled, which means he qualifies for disability insurance. We applied and were accepted, but we both have a full time job, which means that we are required to pay a monthly premium for Caden’s disability insurance. That makes total and complete sense to me, and I wouldn’t expect anything less. Then we got our premium quote, which was nowhere near our financial means and all of a sudden that was not a realistic solution either.
So where does this leave a special needs parent? Really you have 2 choices: you can give up on the services that you desperately know that your child needs in order to be successful in life or you can adopt a dumpster diving approach.
According to Wikipedia, dumpster diving is “the practice of sifting through commercial or residential trash to find items that have been discarded by their owners, but that may be useful to the dumpster diver.” So essentially you go digging and digging and digging in hopes of finding something that you need. Granted there aren’t many services in the literal trash, but the concept still applies as I find myself sifting through a lot of garbage in the newspaper, on community bulletin boards, and internet searches to see if anyone is looking for “research participants” or “volunteers” to help somebody with some project with the byproduct being that my child gets a few hours of free and much needed therapy.
Dumpster diving isn’t an exact art. Sometimes you find something that looks promising, maybe a Tiffany gift box, but when you open it you find out that it’s just an empty box. Often times “research participants” or “volunteers” are asked for money, or invasive/painful tests, or other requirements that simply don’t make the free therapy worth it to us or our situation. But other times that Tiffany gift box has the actual jewel inside and your day has been made. We’ve found a couple of jewels in the last month. First we found a university department that holds an occupational play therapy lab each spring as a practicum for their students under the strict guidance of licensed faculty/occupational therapists. Caden was accepted into the play lab and for 8 weeks he will receive an hour per week of free occupational therapy! Then we found a college student mentoring program that offers students who want to work with special needs individuals a chance to get experience by volunteering, again under the strict supervision of licensed faculty/staff to spend 2 hours per week for 8 weeks with a special needs child working on physical activities (physical therapy) and one-on-one relationships (social therapy).
Yes it took hours and hours and hours of sifting through the trash to find these services but wow what a find—24 precious hours of free and appropriate therapy that Caden needs. Now I realize that at the end of these 8 weeks we are back to square one which is why I’m back in the trash again—dumpster diving isn’t probably going to yield any long term solutions but it’s the small victories that keep us going and keep us searching.
And if this blog hasn’t inspired you to keep searching for answers or given you a glimpse of hope for the day at least I’ve given you trash to think about—hey maybe you’ll even think about me and my blog the next time you walk past a trash can or dumpster…………and really what more can a blog author hope for than being memorable J