The Idiot Quarterback

Every once in a while someone will come up to me when I’m pushing Ike around in his chair. Sometimes they work with kids with similar disabilities so they just want to say hi, Sometimes it’s parents who have children in similar situations and are looking for common ground, sometimes it’s little kids asking what’s wrong with Ike and why is he in a chair, and sometimes, like the guy who stopped me this weekend, it's new parents looking for answers as to how he and his wife can better cope, dealing with their newly diagnosed disabled child.

All new parents of special needs kids, and that included me, want to believe that there is this secret underground healthcare society where, if they could just find the hidden entrance, they would enter a new world of help and support. A place where maybe, just maybe, a higher level of overall care would be available. One that doesn't exist for most people – to those people with the more “normal” kids.

When you have a newborn child who has the label “special needs” or “disabled”, you want to believe that there will appear someone much more qualified than yourself, who will, if not take charge of your child’s well being, then at least work to coordinate the ongoing overall care of your child so that you can sleep soundly knowing that everything that can be done, is being done.

I could see in this man's eyes, that he had started to get a sinking feeling that maybe this wasn’t actually going to happen, and that the person hired to fill the newly created position of “Overall Healthcare Co-coordinator of the new Special-Needs-Child Division” was actuality going to be a soundly unqualified non-applicant: Himself. I say soundly unqualified because anyone who’s ever had a newborn child could hardly be called qualified for even mundane tasks like driving or making dinner. Anyone who’s ever had a two-month-old child knows how impossible it is to even get a little bit of sleep, much less get two doctors across town to talk to each other about treatment options of another doctors diagnosis of your child’s rare medical condition.

His mother, who was standing a few feet behind him, said “It’s like you’re the new quarterback and you don’t even know how to play football”

He had already been out on the web and looked up his daughter’s diagnosis, which is always more terrifying and worse sounding than the reality. There is a tendency for information out here to be long on World Wide Pity Party point of view and short on real day-to-day information. Let’s just say that there aren’t a lot of web pages that deal with the resounding success of their child’s treatment.

To make matters worse, whatever real information you’re able to get in regards to treatment options, will be countered by the fact that there are doctors who will actually resent your newly acquired knowledge. When you speak up on behalf of your child, this is called “Advocating for your child”; a sensitive social workers phrase that some in the medical profession will spit from their mouths with the same distain that a Neo-Con spits out the word “liberal”.

I gave him my email address and told him to write me. There were a ton of things I wanted to explain and knew that standing in a parking lot was not the best place to convey all of the information I wanted to give him, but I’m worried that he won’t. Most people, especially new parents, don’t always want to hear that.

So I've decided to ask my good friend Mini, who helped me with these web pages, help me put something together as a parent resource. Maybe something that is both a little medical philosophy mixed with a little fact – something that has a message area for people to post questions and links to organizations that might be helpful.

Or maybe it’ll just be a small place I can bitch about all the medical world crap that I feel needs to be bitched about. A place I can put a voice to all the frustrations Sweetie and I deal with on a week-in week-out basis.