What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

 
 

They Won’t Cooperate, So What Do We Do?

Adversarial relationship with the professionalsI’ve just received an email announcement regarding an attorney’s presentation for families who want to convince their school districts to provide services for their disabled kids.

 The email has its due share of acronyms that may not mean much to people outside the fray (IEP, IDEA, FAPE, OAH), but the message is pretty clear. Despite whatever the law says, and despite whatever ideals educators may have had when they entered the profession, nothing is fair. Essentially, the attorney will tell parents:

  • How to plead the case for individualized services for their child
  • To remember that, under the law, they are in theory “equal members of the team”
  • How to break through the perception of the “crazy parent”

I used to go through those battles. Two or three times, in wrestling with Joseph’s school, I hired advocates–career educators who knew the lingo and knew how to pounce when the teachers and therapists representing the school tipped their hand. Despite a generally pleasant veneer, it was always an adversarial situation. Obviously, things have not improved.

Given the fact that money is tighter now than at any time in memory, how could things have improved? Fighting the system doesn’t come naturally to most of us. It certainly did not come naturally to me. Of course, seeking help for our kids leads a lot of people outside their comfort zone. But although we do have to seek that help, I can’t avoid wondering whether some avenues are worth the trouble.

Public money for things like individualized ABA programs just isn’t there, if it ever was. Families who insist on it are routinely blamed for their “sense of entitlement” – and generally end up with nothing anyway.

Am I wrong? I say that based on everything I’ve experienced and observed over many years, but somebody please do tell me I’m wrong.

What I like best about Rob Rummel-Hudson’s memoir is his depiction of duking it out with his daughter’s school in hopes of getting an assistive technology device that would help her communicate. In the end, the family raised money via their website and bought the thing themselves. It’s a beautiful victory. Not the end of their struggles, mind you, but the kind of step forward that everyone loves to see.

So, as I’ve suggested before, I like the idea of finding alternative ways of getting what you want. By this point in my life it comes naturally. But again, alternatives are no sure thing, either. Rob’s most recent blog post tells the story of someone who apparently tried to emulate his online appeal for funds but who left the participants with a suspicion of having been duped. Such stories can only hurt future legitimate efforts, in the same way that fraudulent memoirs undermine the perception of those seeking to tell the truth.

I don’t know what the families attending that presentation ought to do. But like the school districts we all have finite resources (I’m talking about time, energy, and spirit as well as money). Governments seldom manage what they have with any wisdom, which is a big part of the reason behind what’s going on in the news today. In comparison, families can reach the end of their ropes a lot sooner, and with more finality. Choose your battles wisely.