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This Is What Community Inclusion Looks Like for My Son With Down Syndrome

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My 14-year-old son, Elijah, has Down syndrome, but it does not define him. He has a unique perspective on life and I learn from him every day. He is the most caring and emotionally intuitive person I know, and his intelligence in these areas far exceeds my own. He is full of humor with a wit that cracks me up. His exuberance for life is infectious, and I find myself often repeating his catch phrase: “Best day ever!”

For him, each new day with all the ups and downs is the best day ever. And there have been plenty of challenges. He has faced and persevered through medical ordeals that would have laid me low. He sometimes struggles to communicate verbally, but he is persistent and can usually find a way to get his point across. He is delayed academically and struggles with reading and math, but he keeps trying. He gets frustrated that he can’t do all of the things his brothers and peers can do.

We have always had to fight for more inclusion in school. The default for disabled students in his school district is a self-contained classroom. As his typical peers advance academically, it gets harder and harder. He wouldn’t get much out of sitting in on an algebra class when he is still struggling to count to 20. Perhaps with a one-on-one para-educator he could participate, but they are not staffed for this kind of accommodation. So we insist he does participate whenever possible — in elective classes like art and woodshop, in the lunchroom and in physical education. But he is all too aware he is separate. Not because of his peers, they are incredibly kind to him, but because of the systems that are in place.

There are probably other school districts and private schools that do a better job with inclusion, but we wouldn’t trade his community of peers for anything.

Our town is rich with extra-curricular activities for him. He absolutely loves Special Olympics and competes in basketball, track and field, bowling and swimming. It instills a sense of pride and independence that is invaluable. He has all of his ribbons and trophies displayed and beams when he shows them off. The coaches and volunteers are always very supportive and go out of their way to make sure all the kids have a great time. If you are ever feeling disappointed in humanity, I highly recommend attending a Special Olympic event and your faith might be restored. It is the antithesis of the hyper-competitive dog-eat-dog world we live in.

We also have great services, like the Montana Independent Living Project, where he can attend events like dances and bingo nights, or learn independent living skills. All of these activities are great for him, and the organizers are good people, but there is still an inescapable separateness.

Last year we stumbled upon a children’s theater troupe. They were putting out a casting call for a play called, “Same Difference,” which was billed as promoting disability awareness. Elijah has always fancied himself an actor, starring in many a production in our living room, so I convinced him to audition. He was very nervous and self-conscious of his language skills, but gradually warmed up.

I was happy to see the cast was a mix of typical and disabled kids and adults, and they were all very supportive of each other. There were older kids with Down syndrome who were excellent role models, and other kids with a wide range of abilities and roles to suit. The play itself was entertaining and thought provoking. It touched on many pertinent issues, like bullying and inclusion, and also more nuanced issues like disabled people’s right to self-determination. It turned out to be the perfect introduction to theater for him, and he has really blossomed in subsequent productions.

In his next play, he was given a perfect role, one with a manageable line he could deliver, where he could really shine as an actor. You could visibly see his confidence and skills grow with each performance and he was so happy to have friends, family and teachers in the audience. The directors were mindful of his limitations, but always pushed him to do better and never made him feel separate. His fellow actors were always supportive and helpful, even when it required real effort. They always included him in the workings of the play, as well as the shenanigans in the dressing room. Later that year at a banquet, he received an award for his role and I’ve never seen him so proud. He stayed after the end to shake hands with all of his adoring fans.

As he transitioned into high school, he didn’t miss a step, in no small part because he already had a group of friends, his theater troupe, who knew him by name and high-fived him in the halls.

As I write this, he is in their production of Lion King Jr., a children’s version of the Broadway play. Once again, the director cast him in a perfect role, one without lines that would trip him up, but challenging enough to keep him engaged and growing. He enjoys the choreography and surprises me with his attention to detail. He has many entrances and exits and props to keep track of, and there is always someone there to help him when he needs it.

Teenage years can be so hard, with or without disabilities, but to have a group of accepting peers can make all the difference.

This is what real inclusion looks like. Elijah never feels separate, he is just another member of the cast. I honestly can’t tell if the directors have intentionally made the effort to be inclusive or if they are just the kind of quality human beings who just are inclusive. Actually, it’s obviously intentional, but they don’t let it appear as an effort. That kind of compassion is contagious and they have established an atmosphere of inclusion, not just for the visibly disabled like my son, but for everyone regardless of abilities or socioeconomics or age or background. Once that sort of environment is established, it is self-reinforcing.

Our lives are enriched by a diverse community and we can all learn from and enjoy each other.

A heartfelt thank you to The Orphan Girl Children’s Theater in Butte Montana, and to the educators out there making inclusion a priority. I believe you are improving all of our lives.

Originally published: April 23, 2018
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