inclusion or connectedness

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a typical photo of my not-so-typical teenager

Aaron is heading to high school in September.  This transition has caused me a great amount of personal grief – some of which is because of my anxiety around the switch of schools, but mostly because he is moving from a model of inclusion to a model of special ed classes.  We have fought hard to have him included in his community school setting for the past 11 years.   This has been exhausting work, but don’t think I haven’t noticed the erosion of inclusion over the years, starting in grade 3, when he spent most of his time in the principal’s office (this was an exceptionally bad year which culminated in a change of schools), to more and more time spent in resource rooms, with other kids with ‘funding,’ with Educational Assistants, and gravitating to hanging out with considerably younger kids at recess time. His peers pretty much left him behind in the dust, and while I can (and have) railed about this in the past, this is his – and my – reality.  Despite my constant pleas to provide adapted curriculum, delivered in the regular classroom, teachers struggled with figuring out ways to include Aaron as he got older and his gap with the grade’s curriculum widened.

How I wish that all teachers were educated to be special ed teachers so they had the toolkit to teach all kinds of kids – disability or not.  How I wish their classroom sizes were smaller and they had more prep time to adapt lesson plans for kids needing extra support.  This is not the case in British Columbia (nor Alberta, in my experience).  It is what it is.

Today I visited the special ed program in his new high school.  I arrived right after lunch, and it happened to be the students’ mindfulness time, called MindUP.  This involved a few minutes of listening to some beautiful classical music, followed by a guided meditation led by one of the Educational Assistants.  I stood with my eyes closed at the back of the class, basking in the peace.  A small epiphany floated by in my clear head.

What if my past discomfort with having Aaron in a special education class was due to my own discomfort with kids of differing abilities?   What if I had been dismissive of other kids with disabilities, as so many other parents of typically-developing kids are of Aaron himself?  What if I thought he should be in a ‘regular’ classroom to force him to act as ‘non-disabled’ as possible?  This awareness hit me like a sack of bricks, my eyes stung with tears and I hung my head in shame.

My past year working at a children’s hospital that cares for and serves children with disabilities has been a gift to me.  There, I have met many awesome families who have super children with different kinds of disabilities.  It has been an honour to be welcomed into their lives.  In getting to know kids who have CP, Autism, rare syndromes, and brain injuries, I have confronted my own values and feelings about kids with things going on other than Down syndrome.  This has been both humbling and hard.

I’ve realized that one of my trepidations about having Aaron in a special education class has been related to my own fear of the other children.  This ignorance comes from exactly the same place as so many families in Aaron’s schools over the years who have shunned him and our family.  (In our experience, the more educated and socio-economically well off the family, the deeper the shunning has been).  But I, too, have fell into this trap of stereotypical thinking.  Shame on me.

Today, after the meditation in the class, I opened my eyes and saw a group of diverse young people, all making their way in the world.  Some communicated with methods other than speaking, others used mobility devices to help them get around, and other kids had figured out ways to deal with our overstimulated sensory world through rocking or talking to themselves.  But of course they are all kids too, just like Aaron (who can be challenging to understand and who likes to hum and talk to himself in third person).

I am thankful for my workplace that has blessed me with the ability to reflect on my own values.  Last week, I met with a very wise mom, who shared with me – what if high school is really not about curriculum, but it is about Aaron feeling confident?  What if it isn’t a matter inclusion or segregation; it is a matter of connectedness?

The older I get, the more I realize I don’t know.  Bring on high school, in whatever form it is offered.  It has taken me a long time, but I am ready to put my own blustering ego aside to support my boy to finally find somewhere he truly belongs.

2 thoughts on “inclusion or connectedness

  1. nancybergen says:

    Oh Sue, you have totally got it right. Confidence is truly what my daughter has found in being in the resource room at her high school. She is making her own way and I have been so blessed by the people that we have met or connected with on this journey. However I see everyday how many people just don’t know how to “be” around those that live with special needs. There is nothing to fear…. we just need to show care and be curious about them just as we would be with any other individual.

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