good inclusion

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I read the Globe and Mail article today with the rather misleading headline: Are Inclusive Classrooms Failing Students?  (I’d edit this headline to say people are failing students, not inclusive classrooms).

I feel deeply for the families who shared their stories for the piece.  I’ve been one of those families.

We can blame the system but the system is made up of people.  Never forget that.

My son is 15 years old and in Grade 10.  He has Down syndrome.  His story of inclusion is a rocky one, especially in the elementary school years.  His experience from grade 1 – 3 was so bad – and included torment by boys in his classroom that went wholly unaddressed by the principal – I think because the main perpetrator was the son of a prominent lawyer and doctor – that we sold our house and moved across the city to get him into a more welcoming school where we knew he’d be safe.

It was then we realized that each school is different and each year is different, depending on the mix of other kids, families, principals, teachers, Educational Assistants and school districts.  If even one of those factors is misaligned, inclusion is so precarious that the whole house of cards comes tumbling down.

I don’t want to dwell on the bad inclusion.  I want to offer hope to families who have loved ones with disabilities.  It can get better.

Now Aaron is in his third year of high school.  He attends all regular classes – classes that he himself chose – including two academic classes.  He does not balk at going to school now.  As far as I can surmise, he’s happy and importantly, he’s learning and growing.

His first year of high school was a tough transition.  He tested the teachers and it took them some time to get to know him.  But then one unusual thing happened.

In November that year, the special education teachers asked me if I wanted to speak to the school’s Professional Development Day about what inclusion means to our family.  This was my last big talk before I was diagnosed with breast cancer.  Believe me, I took this talk very seriously, as I had a sense about how seminal it was.  I prepared extensively  – interviewing many other families about what they wanted me to share.  I talked to Aaron at length about what was important to him.  (I wrote about what I said here).   It was the most important presentation of my life.

This was because I had a chance to share family stories with the teachers – almost 100 of them – about what mattered to families like mine.  On the day of the talk, I was a sweating nervous wreck.  Thankfully, the audience listened graciously, about what was important to Aaron and to other families who had children with disabilities.  I also spoke about how inclusion benefits the other kids, and how disability is part of diversity just like race and gender orientation.

The teachers’ openness to listening to family stories was everything.

I have been ‘that’ mom for years.  But after the teachers heard my stories, something shifted.  Maybe I was was no longer the difficult ‘special needs’ mom.  Maybe I was someone like them, a person who had something unexpected occur in their life – in my case, I happened to have a child born with a disability.  I was firm in my assertion that my kid had a right to an education just like any other kid.  I was clear that Aaron wasn’t just a problem – he was in fact someone worthy of love and belonging, just like anyone else.

I’ll never know if my talk made a difference.  I don’t think I am the best speaker in the world or that I imparted great wisdom.  But I did tell my story, and shared elements of other family stories, and the teachers did listen.  I do believe this helped Aaron be understood and accepted, even a little bit.  At Aaron’s high school, I have a strong sense that the leadership and teachers believe in Aaron.  That’s so crucial.

I’m writing this post as our little family of three is in the middle of a sleepy vacation.  Today we were in a surfing store.  I noticed the owner watching Aaron intently.  Finally he said, “I have a son with Down syndrome too.  He’s three.”  We talked for a few minutes about how his son was doing and also about how hard life is sometimes.

As I was going out the door, I turned to him and said, “Ah, but it is the most important things in life that are hard.”  He paused and nodded.  We smiled at each other, our secret shared.

The most important things in life are hard.

For the families struggling, I want to say that things are hard because they are important.  I agree that it isn’t fair and it isn’t right.  But also I know you can do hard things.  Keep speaking up.  Keep sharing your stories.

For the educators, please make the space to listen to family stories.  I promise you it can make all the difference in many people’s worlds, including your own.

One thought on “good inclusion

  1. Katharina Staub says:

    Thank for sharing your story Sue. I often ask myself if I’m doing enough, if I’m open minded enough to support all of my students in their learning and growth. How are the families managing? Sometimes they’re not.
    Is it tiring? Is it demanding ? Does it require planning, trying out new things and trying again?
    Yes, to all of the above . But it is so worth it. We cannot give up on our kids, our students .
    I think we , educators and systems, do fail kids and their families sometimes. We must prioritize as that lonely fight of families with children who have additional needs, is a hard battle. Love katharina a

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