What is inclusion and why does it matter?

Inclusion.  It’s a word that is stressed by parents of special needs often.  It’s simple.  Inclusion is the act of including.  Inclusion means feeling part of something larger than yourself and feeling like you belong.  It’s a feeling, we all take for granted, but if we never had that sense of belonging, it would make a seriously detrimental impact on our lives.

Inclusion isn’t about finding a one-size fits all for each child. Some children go to schools solely dedicated to work with children on the spectrum. Some children on the spectrum are able to go to every single class that their typical peers do.   My child is in a self-contained classroom but is included within his public school.  He goes along on field trips and attends “specials” with his typical peers.  His typical peers know him, he isn’t just a child behind a door somewhere.  They are sometimes his biggest cheerleaders.  Sometimes the public school has exceeded my expectations:

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Like the time where Brian was given this certificate by his fourth grade teacher at the completion of the school year.
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Or this time, when his fourth grade peers independently covered their classroom whiteboard with their sentiments.

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And when other classrooms, not even Brian’s classroom, all made signs to come cheer him on at the Special Olympics.

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And when his peers lined up to give him high fives after he finished a race at the Special Olympics Track Meet.

Inclusion doesn’t just benefit my child.  It benefits the “typicals” as well.  It makes them compassionate human beings.  It opens their eyes and helps them embrace differences in humans.  By including my child, it helps them understand the worth of each and every human being.

When inclusion works, my heart swells until it feels like it can no longer be contained within my own chest.  When it works, nothing else in the world matters except for that moment in time when my child is included.

When it doesn’t work, it hurts.

I put in for PTO on the last day of school last year.  There was an assembly and  a slideshow that I wanted to attend.  It was a special last day, as the boys’ school would actually no longer be existing after that day, as the district reformatted the schools.  The assembly started with the fifth grade class leading everyone in the Pledge of Allegiance.  Every single fifth grader stood up in a line, all looking so proud to be able to lead the last Pledge that their middle school would ever do.  Every single fifth grader, except for my own.  Mine was sitting in the bleachers, watching.  My child who, no matter how much time he spends in the self-contained classroom, is a fifth grader.  My child who frequently recites the Pledge and knows every single word.  No one had thought to invite him to recite it as well.

Later, I attended an hour-long fifth-grade slideshow where there were exactly three pictures of my child.  Three, that were added as an after-thought.  I know it was an after-thought, because I had contacted the school about the slideshow and asked if Brian was included and if I should come.  And then was told the teachers scrounged around for some photos.

I left my boys’ last day at their school, blinking back tears.  Part of me was telling me to stop being silly.  It was just a slideshow and a pledge.  But a bigger part of me, was seeing that the inclusion we felt in elementary school was slowly slipping away in middle school.  I left the school that day feeling like it was broadcast to not only me but to his peers and to the other parents and most importantly to HIM, that Brian didn’t belong.  His actual program was the best it ever was and while focusing on that, we had lost the picture of inclusion that meant so much to me.

I didn’t actually put up a huge stink.  Which is very unlike me.  Honestly, sometimes I’m just tired of being “that parent”.  I decided to just let it go and focus on the summer ahead of us.  When fall approached, we’d start all over again.

And what a summer it has been!

First, Brian was made into an honorary construction team member by Lane Construction.  What a ride that was.  Brian was noticed and he was made a member of something!

Then we got off a wait list for Specialized Section 28 services, after waiting 26 months!  And Brian has been enjoying our community with his workers.  Going to stores, visiting parks, even joining the local Teen Center.  He is being included in his community.

Team Lane/Brian spreading Autism Awareness!

Team Lane-Brian spreading Autism Awareness!

A couple weeks ago, Lane Construction once again contacted us and asked to do a fundraiser in Brian’s name for our one of favorite local autism organizations.  Once again, they brought autism to the community discussion.   We were able to make an event that was all-inclusive and welcoming.  We had a ton of families who have a child on the spectrum attend and I believe it really opened the eyes to community members to just how many local families are touched by autism.

And then soon after, I was asked to speak at Aldermere Farm’s Member Appreciation Event about Brian’s time spent at their after-school club.  Their after-school club where they included Brian.

My speech focused on inclusion and what it could mean for children like Brian.  I ended the speech with something like this:

“Inclusion, is often a word many parents of children with special needs, repeat over and over as we seek what we believe is best for our children.  We want them to be involved in the little things that others take for granted despite any limitations they may have, because despite those limitations, they also have a lot to offer in helping opening up minds and hearts.  I’ve thanked this farm many times, but it will never be enough.  So one more time, thank you Aldermere Farms, for opening your doors and your hearts to our Brian and allowing him to be included”.

I’m not sure inclusion will ever be a steady path for my little man, it will always have it’s bumps and it’s twists in the road.  I’ll always have to be thinking outside of the box and reminding people what it means to families like ours.  It’ll always be at the forefront, because I need the world to be more compassionate and welcoming, and not just for today.  Not just for the cute little children on the spectrum but for the adults on the spectrum, that our struggling to figure out how they belong in our community.  Inclusion matters.  Inclusion recognizes and honors the fundamental value of each and every single person.  Inclusion is therefore, one of the foundational stones we should be building our society upon.  And will once again, be one of my main talking points as we begin a new school year.

Strength lies in differences, not in similarities.

 

Heather Nelson

About Heather Nelson

Heather resides in Rockland where she is busy juggling life as a newlywed, a mom to two boys (one of which who has autism), a part time job in direct sales, and a full-time job as a pediatric occupational therapy assistant. She has a love for live music, karaoke, and cheering on the underdogs.