Thursday, December 15, 2011

On IEP Meetings...

In the last few weeks I have participated in multiple special education team meetings. There are four that come to mind specifically. Four different states, four very different children, with four very different disorders. There were so many consistent features in each of these meetings in spite of the fact that the children are so vastly diverse! It led me to wonder what makes a successful school meeting? The team? The parents? The child? Or the advocate? Or that special combination, like a great recipe where it all clicks!
The first thing they had in common was that all the teams had similar participants. Speech and language, physical therapy, occupational therapy, special education, assorted administrators and of course parents who love their children dearly, are invested and WANT to follow through with recommendations. Despite these invested parents, each meeting has one dependable feature, the school team's resistance to understanding the relationship between the brain, medical diagnosis and education. A resistance to recognize, or perhaps it is a very basic lack of understanding, how important brain based intervention is. It should drive every suggestion, idea or input on the IEP.

Each meeting begins with the same fairly typical tension and in some cases overt hostility between the school and the family. And, of course as the outside consultant antagonism
is typically the norm. They assert their expertise, which would make sense because they are doing the job everyday of educating the children. Except that in my case each child I have worked with has had a rare neurogenetic disorder. Sometimes these disorders are as uncommon as 1 in every 100,000 individuals. What further compounds this unique dance between school professionals and parents is that I am considered an expert usually on these rare disorders. I may have cared for several children if not forty or fifty boys and girls with this specific neurogenetic condition.
So here is my challenge... How does one impart important and vital information to school personnel about these rare disorders? Equally important, how does one build a
rapport with the team so that they recognize their own major knowledge gaps with these unique disorders?

Typically, they will listen politely and reply in degrees varying from apathy to overt resentment
that you (the parent) have a medical plan and we (the school) of course are an educational system and that is not educationally relevant!
I began wondering what is educationally relevant? Or more importantly what is not educationally relevant in a child with handicapping condition? Is putting on a coat educationally relevant
if you are 7 years old and cannot do it? Seems like it should be! There are hundreds examples of the term educationally relevant being used as if only reading and writing are important to independence and success.

Or in another case, a first grader, born with a rare disorder that assures reading disabilities. This first grader has significant delays in speech and a major discrepancy between expressive speech
and receptive language skills. Yet, a battle ensues (not a small one) on whether they use a software that encourages phonemic awareness. And, again more importantly why now?

You wonder...

WHY do educators resist the obvious connection between brain and education?

WHY do we split medical diagnosis from educational services?

WHY do most teams say "Oh, that is a medical model" whenever medical information is available?

Most importantly, WHY do we think we can take the BRAIN out of education!

As an optimist, I try educating the educators and public school personnel on the intimate interface between medical disorders and educational success; teaching the importance of targeted treatment and syndrome specific goals that are brain based; and always keeping an eye on the future while I'm grounded in the present and growing from the past goals.