Special Needs – Is Your Community Meeting Them?

My 17-year-old daughter’s friend held a screening of And Then Came John at our local library last night, so I thought it would be a great opportunity to spend some quality time with my eldest and watch this 80’s era (although it looked more 70’s) Down syndrome documentary.  Just so you know, the only place I could find this movie on-line wants $175 for this 36-minute movie.  I definitely recommend watching it, but you may want to try lending it from a lending library or possibly even your public library could get their hands on it for you.

This is the story of John McGough’s 26th birthday party and all the days and years that made up those 26 years.  John’s mother was counseled by doctors, family members and friends at his birth to give him up, institutionalize him.  It’s simply what was done with most children with Down syndrome at that time.  She bucked the system, brought him home, fought, as many people are still doing today, to have full inclusion in the schools, loved him, supported him, and things seemed to be rocking along all the way through high school.

And then the bottom dropped out.

With all the focus on full inclusion in the schools, John and his family had been spoiled by a system that embraced him with open arms, while the community outside of the school system was still far behind the times as far as giving people with special needs a voice or a place among them.  John left school and experienced “real life” in the city of L.A. as lonely and without opportunities to share his wonderful self with the world around him (outside of his family).

Enter a move to Mendocino, California where John would continue life with his mother and stepfather, but his life changed dramatically.  Mendocino was a small town that not only fully included John but embraced him.  And Then Came John takes us through John’s experiences in his job, playing drums with a band (and he is an amazing drummer), his own art show (again, amazing!), singing in the church choir, caring for his grandmother – the same grandmother who had earlier in his life insisted he should be institutionalized, exercise class, and the list goes on.  John and the people who know him best articulate all the wonderful that is John.

We finally wind up at his 26th birthday party where he shares with the entire Mendocino community how he feels about them.

This is not so much a film about a person as it is about the power of community in the life of a person with special needs.  Whether the power results in positive change or negative, we cannot ignore the strength of the power of community.

While all the empowerment and advocacy that goes on in the public schools has done great things and won many an opportunity, these days for many children with special needs, the best times of their life, the height of opportunities for inclusion, ends as they age out of the public school system.  Then many of them must make a decision with their families that no person should be required to make.  They must choose to stay home with the family that loves them the most or go to live in a sheltered community with lots of opportunities for recreation, relationship and possibly education with other people with special needs, but little connection to the larger community around them.

Not much inclusion there.

John’s story is the exception.  His world opens up at the beckoning of the people in Mendocino.

It got me thinking.  There are so many people passionate about full inclusion of children with special needs; teachers, parents, churches.  Where do they all go after these children graduate?  I mean, don’t you see many more kids with special needs in a P.E. class than you do an adult with special needs in a gym?  Don’t you see many more kids with special needs in Sunday school than you see adults with special needs in a Bible study, choir, or even church?  Many more kids with special needs on T-ball teams than you see adults with special needs on sports teams.

Why is that?  Perhaps it’s too much to ask for a group of adults to accommodate another adult with special needs.  I mean, it can be inconvenient and time-consuming to communicate and bridge the gap of understanding that often comes with including a person with intellectual disabilities.

But we ask our public school kids and their teachers to do it, don’t we?

They manage.

Hmm.  Well, sports teams – allowing someone with an intellectual disability or other special need on a team may kind of nix the competitive edge that is so important in sports, again it’s probably too much to ask.

We ask our kids to do it.

They manage.

Why?  Why do we ask our kids and the public school system to accommodate children with special needs, to include them “in the least restrictive environment”?

Because it’s the right thing to do.

Are we asking our kids to do more for children with special needs than we ourselves are willing to do for adults with special needs?  Can someone please tell me at what age people with special needs no longer need to be included?  At what age does the obligation for full inclusion stop?

As much as I wonder if full inclusion is over-used in the public school system, the moral truth behind it reflects integrity.  I’m just wondering where that integrity goes once that person with special needs ages out of public school.

Have a story about a community changing lives through its treatment of adults with special needs?  I’d love to hear them.   So far I’ve read about some great special needs communities, educational opportunities for college-aged kids with special needs, art and exercise classes for adults with special needs.  What have you seen?  How about stories of full inclusion of people with special needs within the general community?

For those of you working with adults with disabilities, institutionalized or private, what can people in the community do better to be fully inclusive?

Give me a little hope for Noah who someday will age out of our little homeschool and will need a community to embrace him, even after he’s lost that adorable little Down syndrome boy look.  I guess I just am hoping that community will be the same community that saw him take his first steps, say his first words, recite his first scripture, and ride his first horse.

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2 thoughts on “Special Needs – Is Your Community Meeting Them?”

  1. I wish I had an answer. In a perfect world…alas, we’re not a perfect world.
    Joanne (Sal’s daughter) understood that she had limitations. She was able to get a job with Kellogg in their reproduction department. She must have been able to learn how to operate the equipment. How well accepted she was by her co-workers, I don’t know, but I never heard her complain. She’s now a widow and understands she cannot live alone. Haven’t spoken to her recently, so I don’t know what decision was made.

    1. I go round and round with these issues. I just feel sad when I think of Noah as an adult. I think I’ll look back and wish I hadn’t worried so much, but it’s hard to think of the time when I won’t be able to meet all his needs. It’s so much different than thinking of when my other kids will grow and venture out. Sigh. Nutcracker tomorrow. Can’t wait! DSACT is so awesome.

      Love ya,
      Alyson

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