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Several weeks ago I asked readers and friends and readers who are friends to share stories of inclusion — what works, what doesn’t work. I got a wide range of answers with some repeating themes, and today I’d like to share them with you. I left names out on purpose, since not everyone is an oversharer like me. Thank you for sharing your experiences — it meant a lot to me to read about them, and I bet it will mean a lot to others. Later this week I’ll share some thoughts about Sophie’s first year of high school.

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It was not my son’s first choice (marching band was but we quickly realized that would not work for a variety of reasons)…so we tentatively asked about Army JROTC and everyone said “Yes” and it was the best decision in retrospect, curriculum already designed for peer support and inclusion as well as real leadership opportunities that my son craved. It gave him a group of true friends at the sporting events (JROTC worked every event), weekend fundraising car washes (I may have engaged in a bit of bribery — always having him be the kid who showed up with the ice cold sodas and pizzas), and all the special events, military balls, veterans parades, etc.

He is almost 27 and still friends with many he served with. I should note that I had no prior military background and my son’s dad is a Buddhist, so this definitely was NOT our first choice. Sign language as his foreign language was a great choice as well as the honors classes in English and history.

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I feel like I don’t have a positive example to offer. Kids are nice to mine (an eighth grader with Down syndrome), all high fives on the way out of school. But watching him dance on the outside of a dance circle made me want to vomit. The circle shifted and enclosed several different kids at various times throughout the night, but not my kid. He danced the whole time, all by himself. He said, “I danced like Kevin Bacon, Mom.”

I was thinking, “Ya at the beginning of the movie, when he was a total outsider.” Seven hundred friends on Instagram but not one invite to anything (birthday thing, jump place thing, after school yogurt) in 3 years. I dread the promo dance, grad field trip to Big Surf, and endless promo party pics that he will either be on the sidelines or not invited to.

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When my son (who is now in college and has epilepsy) was a junior there was a girl with a wheelchair who ate lunch every day in the nurse’s office. When I noticed I asked Brennan about her and her solo lunch (he went to the nurse’s office every lunch for meds). Brennan didn’t know why the girl ate alone like that (and he wasn’t going to eat with her because he had a girlfriend to make out with). I was angry at the school for letting this go on all year. The good (sorta) news is that the next year she didn’t eat alone anymore. I think a relative started school there that I saw her with regularly. I wanted my son to fix it. I wished there was something I could do. I was mad that no staff seemed to fix it somehow. I don’t know what the parents knew. At least you know and can ask for some help.

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My daughter (a high school student with Down syndrome) is boy crazy and obsessive. Stalking is a good way to describe it. She calls me “Caleb” and pretends I am this kid she likes. She literally greets me, “Hi Caleb.” It’s exhausting. She also has crushes on a few pop stars and a typical student in her theater class. I remind her not to say, “He is my boyfriend” in that class so that she doesn’t embarrass him.

I think she is lonely. She’s an introvert, so school is where she is around people, and none of her classes are very good. I only have her go a half day. She won’t be able to graduate technically because she won’t have enough credits, but I honestly don’t care. I hope better things are coming. I can’t wait til summer.

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My typically developing daughter has struggled to make friends in high school. I have no help to offer. I seem to remember that high school sucked even when I attended.

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Until my son (now an adult, he has Down syndrome) became the “assistant” to the baseball team high school was horrible. But in the spring of freshman year the coach invited him to be the team assistant and my son was finally a part of a group and had a sense of belonging. He was the only student with DS or anything other than a learning disability mostly-included in his high school. And there was a “severely handicapped special day class” on campus. THAT class left campus…on Fridays—when there were pep rallies, assemblies and fun opportunities to be socially included on campus. Such a disservice to the students.

But I digress. My son had no peers with DS in his classes—and the typical peers included him in when he showed up but never had one call and invite him to go with them.

….We created “Cool Club” in high school. Twelve friends with a variety of disabilities—each family planned an activity one weekend every 12 weeks for the group to do together. That gave Sean the social circle he needed outside of school.

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My daughter (an adult with intellectual disabilities), was very happy in high school and often talked about all of her friends. But none of these friends called or asked her to do things with them. And when my daughter asked them, it was seldom acknowledged. (She did have one special needs friend and they did things together.) For graduation, though, two of the most popular kids asked my daughter to walk with them. I have no delusion that this was a generous offer on their part, but still — it made my heart happy.

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It will be ten years this June that my daughter (she has Down syndrome) graduated. She is still madly in love with one of her teachers. Still surfs the web to find any and all pictures of him and snaps them on her phone. She still believes he is going to divorce his wife and marry her. This week a teacher at the same school who is a customer at our shop came in. She knows the whole story. She was one of the females that helped him understand that he had to stay away from my daughter. Like avoid her at all cost. Being take the really long path around the building when classes changed so she wouldn’t see him.

This week when the woman asked how my daughter was doing I said great although she is still pining for Mr. K thinking he is going to divorce his wife. In all seriousness she said…”He did.” Oh lordy lordy lordy I can’t let that slip out to my daughter. But now I feel like I’m withholding information. It’s never easy. I don’t think there are any right ways or wrong ways. Sometimes we just need to let life happen.

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So high school ended last May, my daughter (who has Down syndrome) graduated with her class, fully included, or was she? Senior year was her most inclusive year, educationally. She loved her time in the chorus, teacher was great, loved having her there, students were kind and accepting, but no one invited her anywhere outside of school. She loved drama, had parts in all the musicals, teacher was skit-zo, sometimes saying she enjoyed my daughter, other times complaining her head off!! I was hugely involved in drama, food, costumes, chaperone….My daughter was better behaved than half the typical kids.

She ended up leaving lunch early (and had speech at that time) because she just couldn’t get the social piece. She took kids’ food and pushed and fooled around (just like she saw everyone else doing, except she didn’t have the same relationships). Her married sister took her to homecoming and proms, she wasn’t interested in sports. Academically she did great, gen ed classes with support facilitation (ESE teacher push in). Hundreds of acquaintances, no friends.

Fun story: She got to hug the cute guy in drama, hold hands, he was so sweet to her. I said to one of the girls that my daughter had such a crush on him. She said, we all do, wish he was that nice to me!! To my daughter, it was a very real relationship. Perception.

So, I’m rambling…. My daughter loved high school and was ready to graduate and move on…. What more do we want for our kids?

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Tags: Filed under: Uncategorized by Amysilverman

One Response to “This is What Inclusion in High School Looks Like, and It’s Not Always Pretty. But Once in a While It’s Pretty Awesome.”

  1. I really enjoyed hearing these firsthand experiences from parents regarding inclusion, but did not love the use of the term ‘skit-zo’ being used casually to refer to the drama teacher in one of the submissions. In order to receive respect, we must also be respectful of others.

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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