Tuesday, November 22, 2005

THE OTHER EPIDEMIC

Lately, it seems I’ve been talking a lot with other parents about school issues. Every parent of an autistic child in a public school knows the frustration of trying to get appropriate services for their child. Every school system in the nation that accepts federal funding is obligated to provide those services under the Individuals with Disabilities Educational Act (“IDEA”). Getting an agreement on what is “appropriate,” however, can sometimes seem as likely as the New Orleans Saints making it to the Super Bowl.

Recently, I wrote of a relatively positive experience in dealing with our local school system. For the first time, the movers and shakers in the system (as opposed to the principal and teachers who have supported us for awhile now) met with my wife and me, and actually seemed interested in cultivating a partnership to provide my son with the best possible opportunity to advance.

I remain cautiously optimistic about this year, but progress is agonizingly slow. Our son is getting more attention on the basic services the school is used to providing (i.e., a little speech therapy and a little sensory integration). The more intensive therapies autistic kids need are still absent, but there are definite signs that we might start seeing them. All in all, our experience is a little better than it was last year. Sadly, that little bit better beats the experience many other parents across the country are reporting.

Why do most school systems do such a bad job teaching autistic kids? In part, it’s money. Delivering the intensive therapies our children need costs money, and many systems are already stretching every dollar (although many waste more than they stretch). In recent years it has just been easier for schools to deliver minimal services and see which children can improve on their own. Those who can’t find their own way wind up in segregated classes where they won’t distract the typical kids. Special autism classes fill a real need for kids that aren’t ready for an inclusive setting, but too many systems use them as a final destination.

It would be interesting to see how many kids could successfully stay in inclusive settings if they received the therapies they need on an individual basis. For some children, that means ABA, Greenspan for others, Verbal Behavior for some, and RDI for others. Instead, most schools cling to a one-size-fits-all philosophy, and they institute one-size-fits-few programs that incorporates very little from any of the above-listed programs.

Tina Giovanni writes a terrific blog called Autism 911. Tina is a teacher with years of experience working with autistic children, and she brings a unique perspective to the discussion. Recently, she used a very descriptive phrase for the attitude of too many school systems: “the epidemic of denial.”

It’s too true. As long as schools can deny there’s a problem of immense proportions, they can redirect their resources in other directions they may feel will reap greater rewards. In the meantime, our kids don’t get what they need to learn to function independently.

I’m still not sure how serious our local school system is about being partners in our son’s development. We’re determined that he will stay in an inclusive setting, and that he will progress both academically and socially. Although the change in attitude by the system has not been as complete as we would like, there has been enough movement that I am willing to assume that the administration is acting in good faith. And isn’t that ironic? A school system that has its resources stretched because of Hurricane Katrina is finding a way to bend and stretch a little more, while other systems across the nation are still finding ways to deny.

5 Comments:

Blogger Kev said...

Its exactly the same over here Wade.

Bottom line for education authorities is that SEN = £££ and its a cost they're loth to take up unless they absolutely have to, or in an increasing amount of cases - forced to by law.

Interestingly I was speaking to a friend who's son is a near - genius and they had experiences that mirrored ours - LEA's just don't want to know about any child that differs from the state-approved average. That says something sad about Western society.

11/22/05, 5:27 AM  
Blogger Eileen said...

I think that some of the school districts are starting to get Autism a little more, but not fast enough. They are always still behind. For example in our district, the OT's "think" that they are providing sensory integration, but they really aren't getting it all. They will put a weighted vest on a child, start a brushing program, give some joint compressions and call this sensory integration. This is what they did with Andrew at first until I had to explain
that "brushing is not for all autistic children". Brushing was not for Andrew.

The only way things are going to change is for parents to come together in each and every school district to make the change. I have told you before about the parent group in my school district IMPACT (Improving Middletown's Program For Autistic Children Together). The important word in this is "together". I have been amazed at how respected and accepted this group is by the district and child study team. It is because of the positive way the group has approached the changes they feel are necessary. They have fund raisers to help support the programs and hold presentations/workshops to keep educating the staff and parents. There is still much needed change that I can see as we are just beginning this journey with our district, but I am confident that these changes will happen. The goal is to make them happen sooner than later.

11/22/05, 9:44 AM  
Blogger Kristina Chew said...

SSS are one bottom line, but also test scores courtesy of NCLB legislation. Parents do wish to be partners with districts as you described yourself; it does help if it is a two-way street.
Thank you!

11/22/05, 3:32 PM  
Blogger Wade Rankin said...

That's a terrific point Kristina. There's an irrational fear by some administrators that the "special" kids will drag down test scores and keep their schools from getting recognition. We see this in individual schools as well as systems. Despite any other frustrations we might have, my wife and I feel truly blessed that the principal of our son's school is more interested in the kids than in plaques on her office wall. Her dedication is all too rare.

11/22/05, 3:44 PM  
Blogger Anne said...

It's hard when you bring in an autism spectrum diagnosis for your child with pedantic speech who can write affectionate notes to his mom, and who is so highly intelligent that he brings the school's standardized test results up. Some teachers find the idea that your child is autistic to be "laughable," and believe that he is not succeeding because he is lazy, noncompliant, and chooses not to do his work, and that he has melt-downs because he is spoiled. Anyway, that's my experience.

You would think that by now, years later, people would be more knowledgeable about autism, but they are not.

I liked hearing about the IMPACT program. My experience is that working with school personnel, and supporting them with information and encouragement, is very helpful in most cases. You will always find a few teachers, however, who will be unable to get their minds around the idea of the autism spectrum and find "laughable" the idea that your child really needs help.

11/23/05, 9:37 PM  

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