Invisible Disability

My son’s school’s PTO is sponsoring a workshop to promote acceptance, understanding, and awareness of disabilities.  All of the kindergartners and first graders will attend the workshop.  The flyer home requested that volunteers are still needed to staff the various learning centers they will be setting up in the auditorium for the two days that they will be running the workshop.  I was immediately interested in volunteering, and emailed the organizer, requesting that I be assigned to the station for Autism and/or Developmental Disabilities if possible.  It never once crossed my mind that such a station would not exist. But I shortly received an email response thanking me for volunteering, but letting me know that the workshop only has stations for vision, hearing, and physical disabilities.  Apparently this program has been in place for years now, and no one has ever thought to represent Autism and other Developmental, Neurological, and Learning disabilities.  Until me.  Now.  I replied, in part, with the following:

“…I find it very disappointing that Autism and other developmental disabilities are not already a part of this program.  Autism affects 1 in 68, and with the momentum of IDEA pushing for supports that allow our children to be included in the general education environment to as great an extent as possible, children like mine now rub shoulders with children like yours in every classroom in America.  I find it deeply hurtful that at a time when education, understanding, and acceptance is most needed, an established program to promote these very same principles for children with disabilities would choose to exclude such a large population of disabled children whose at times “invisible” disability makes them incredibly vulnerable to bullying and isolation.

Who can I contact to ensure that in future years children like mine will be represented in these workshops?  I would be happy to volunteer my time and energy to help facilitate this.”

In reply the organizer recommended that I put forth a proposal to the PTO at their next board meeting and said they would look forward to my involvement in including Autism and related disabilities in future years’ workshops.

While I’m glad that I have a chance to make a change here, I still have a hard time accepting that no one has spoken up before now about this.  I would also imagine that the PTO did not consult with the SEPAC (Special Education Parent Advisory Committee) when beginning this program because I can’t imagine that the SEPAC would have let this slide given that more than half the parents on it have Autistic children!

It’s 2016.  Our children are no longer secreted away, segregated outside of mainstream society.  Our children are everywhere.  They are in your classrooms, they are in line behind you at the supermarket, they live a few doors down from you, they flap and squeal at the playground, you see them jumping and spinning at the park.  Our children are right here, and more than ever they need the understanding, acceptance, and support of their communities.  I will not let the PTO forget my son next year.  I plan to make some noise, insist that the SEPAC be included in the planning of this event, and hopefully, facilitate a change.  One little lower elementary school at a time, right?

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