Information for parents of disabled children

Monday, March 14, 2011

How do you say it?

Subject: Quinn, a boy with autism, and the lin...Image via WikipediaIn a couple weeks, I'm due to meet with the Indiana Superintendent of Schools, Dr. Tony Bennett. This week, I'm agonizing over how I'll say it. How do I convey what it's like to watch a school go downhill? How do I explain that it's not about the idea that school is the cure, but whether my son is valued as a person? How do I tell him about the human cost of bad schools in Indiana?

What if it's all about the bottom line?

Here's the saddest question floating around in my mind this morning; What if he doesn't care? It's been our family's experience that this is the biggest obstacle between our children and education. People don't always care, and, yes, sometimes they care about Darrel even less. After all, what will he be when he grows up? Autistic.

RISE Special Services may have individuals who care and work and strive, but the organization as a whole doesn't have the mission. It's lost in the pressure to cut costs and "include" because it's cheaper. True supported inclusion is expensive as any advocate or professional will tell you. It requires trained staff and equipment to make sure kids have what they need to be successful in Inclusion programs. Unfortunately, that's not the only problem RISE has.

Where do we go from here?

Last year at RISE Learning Center, the school that should be the training hub, I sat in a classroom of non-verbal students and found they never worked on reading. No one worked on communication systems of any kind, and there was little accountability on the part of the administration. That teacher is elsewhere now, but the "culture" that led to the oversight remains.

My son's IEP marks the first time in the history of RLC that an autism program has been implemented in its walls. You read that right, but I'll wait to let you look at that sentence again. . . .  Yes, my son's STAR program marks the first time in 30 years of serving students most severely affected by Autism that a program for autism has been implemented. NO staff in the school are trained in ABA at all, and the school hires out for that service at great cost.

How do you reform hearts?

Those are the problems, or at least, a few of them. How do you make someone care about your child if they don't? That's not to say he doesn't. Maybe, Tony Bennett is the one in a hundred. Maybe, I'll walk in there and see a man committed to fair implementation who is outraged at the years of lost opportunities.  Maybe, or maybe not. It's possible it will be just like it always has been when I leave.

My husband is out building a bridge this morning. The kids are off to Perry schools in the city, and I'm sitting here agonizing over education and how to change it. It seems odd. When we realized D would be different, that our lives would be different, I don't think I truly understood what it meant. I thought it meant we would grieve for the life D won't have, move on to struggle through the one we have and rejoice at the small victories each day like every other family with disability.

In addition to those things, I find myself in a crusade to reform a school for all the children who have become so special to our family, classmates and friends. How do I get people to sign up for the mission into which we were drafted? What can I say that will make them look twice at what we're doing, right and wrong? If we don't value the most vulnerable children in our society, how on earth can I make this argument effectively? It all hinges on where our hearts are.

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