Last Thursday was Adam’s transitional IEP (Individualized Education
Program) to determine what type of school program he can move into next school year. Adam’s first five years of life have been a roller coaster ride to say the least, but through the lows he has always risen to the challenges in front of him both physically and mentally and come out better for them.
Without revealing the full details of how the IEP meeting went (mainly because we’re hoping things change), it was not even close to what we wanted, hoped and dreamed for Adam as he approaches his 5th birthday and should be moving into kindergarten.
We sat in shock after being told at the end of a 90+ minute “team” meeting that our son wasn’t “qualified” to enter kindergarten (with or without an aide). Numerous evaluations had been conducted, and documented, by professionals, some of whom Adam knows better than others, with results that were lower (how well does ANY 4-year-old test?) than his actual abilities.
Example: He tested as knowing four letters of the alphabet.
Truth: He knows the entire alphabet and practices it every day. However, the “documented” result was that he only knows four letters. It was even acknowledged at the table that the test results are skewed because they are administered out of the student’s routine. But it is still in writing.
It was results like this plus many others that were ultimately used as ammunition against our dream for Adam, which is to be fully included is a regular kindergarten classroom, which we know he can do.
Why did we begin Physical Therapy, Occupational Therapy, Speech Therapy, Fine Motor Skills and every other beneficial therapy for Adam at three-months of age (as soon as he was home from the hospital)? It was to prepare him for THAT meeting! That first meeting! His first shot at typical integration into a classroom with his peers. His neighborhood school where he can see kids from down the street walking in the same halls as him.
We’ve had friends say “just move to another district,” “Novato is notorious for this,” and on and on. But the fact is we can’t move. It isn’t financially doable. We WON’T move. We are aware of Adam’s right to be included in the kindergarten classroom. We know it will be a challenge for him. There will be ups and downs. Who doesn’t have those?
Last year I began a film series called “Uplifting Down” (www.upliftingdown.com) while at the National Down Syndrome Congress Conference in Phoenix, Arizona. There were 38 individuals and families interviewed over three days about their experiences with Down syndrome. By sitting there with those people as they shared their journeys I made a commitment to them that I would use their stories to help educate and enlighten people around the world about the amazing potential in people with Down syndrome.
A few months later I (and three friends) traveled to Nigeria to continue the Uplifting Down documentary. I stood in front of a room of more than 100 parents over there and stressed the importance of accepting their children, and educating their children, and if they do so others will follow! That film is now being shown around the world on the International Film Festival circuit. The United Nations hosted a screening of it on World Down Syndrome Day (March 21) in Lagos, Nigeria.
There is NO WAY I can accept a path for Adam that I believe is lesser than his abilities can take him. If I do that I might as well stop filming. I’d be a hypocrite standing in front of people telling them to stand up for their children when I’m not even doing it myself. Plus Adam’s face is even on the poster!
So where do we stand now?
- We visit the program that was offered to us (Special Day Class) because that’s only fair, right?
- We wait for the “official” offer to come, which was already typed into the packet stamped “draft” before the meeting even started.
- We counter offer?
- We decide whether to go into debt in lawyers fees just to get what we know Adam is entitled to in the first place?
I like Option Five:
- We hope that somehow the offer changes soon and we start planning for kindergarten!
It’s a terrible experience having to sit and “plot” your next steps. Researching law, Ed code, commiserating with people who have already walked down this same path. Was I fooling myself for believing our journey was going to be easier than all of the ones I’d heard before? I guess so, at least for now.
Time will tell.