Draped in black polyester dresses, millions of high school students will cross a soccer field later this month to collect their diplomas from the neighborhood school exit slip that has dominated their lives for 15 years. It’s also kind of a finish line for tearful parents who believe they’ve completed the nearly two-decade job of raising a quality human being. It is a time of pride, triumph and butterflies over the future.
My husband and I will be two of those crying parents of a high school graduate in a few weeks. We are more than proud of our boy, Ian. But our pride is mixed with some irritation and resentment as students with disabilities like my son don’t always feel included in this month of celebrations and graduation rituals. They often remain on the fringes of school life, even during this particular period.
My son Ian has autism, a disability that affects social skills, so he didn’t have a partner or group of friends to join him at prom earlier this month. Instead, his older brother, Jonah, took a day off from his summer job to escort Ian to the prom. While schools can be slow to find a place for families like mine, sometimes a good-humored older brother can make a difference.
From an early age, siblings of children with disabilities often need to support their parents in their babysitting responsibilities and watch their siblings struggle to complete chores that children without disabilities might find effortless. Teens who enjoy conformity may be embarrassed by the behavior and appearance of their siblings. Ian’s version of autism is relatively mild, but his tailor-made therapies and activities sometimes took so long that I had less energy for Jonah.
At the same time, these relationships can offer powerful gifts to these siblings. They are able to learn to appreciate the beauty of differences and neurodiversity. Jonah told me that his relationship with his brother changed the way he saw the world and, according to him, made him kinder and more patient.
“I can empathize with a lot of different people,” he said. “I don’t judge people too quickly based on their behavior.
When he was in high school, I suggested that Jonah write his college admissions essay about his experiences with a disabled brother. He refused. Jonah said he didn’t want to feel pressured to say anything negative about Ian because his brother was just a source of positivity in his life.
“I just like the guy,” he said.
About a month ago, when I asked if he would accompany Ian to the ball, Jonah quickly said yes. The afternoon before the big day, we picked up matching charcoal gray suits and scarlet bow ties from the local tuxedo rental store. Jonah styled Ian’s hair with goop and tied his cufflinks. As I took the obligatory photos on the front lawn, Jonah showed his red-haired brother catalog-style poses for the camera.
During the evening, Jonah texted me with updates on how Ian melted onto the dance floor and chatted with his classmates. When they got home I asked Ian how it went. Not the type to move, he just said: “Great!” He had a big smile on his face, so I knew it was a special night. Jonah said he also had fun that night because it was so nice to watch Ian have fun. Both children congratulated the truck of empanadas that the school had brought for the event.
Proud of the two boys, I shared a prom photo the next day with my small group of friends and Twitter followers, writing, “When my autistic child didn’t have any friends or girlfriends to join him at the ball, his older brother took a day off and left with him. Two awesome kids.
Shortly after posting this tweet, we drove up to upstate New York to go camping for the weekend. With spotty internet access at the campsite, my phone didn’t activate until we went into town for dinner. My jaw dropped when I saw the responses to the prom photo. Ten thousand people from various walks of life and political affiliations had liked and retweeted the photo of my children. They told me about their brothers and sisters or children disabled, while others simply Free congratulations. Some answered with pictures of their own disabled children with their siblings at the ball.
Out there in the woods, surrounded by tall trees and ticks, I felt the embrace of other caregivers, families and kind people everywhere. And that support came at the right time.
I won the lottery with my two boys, but sometimes parenting a child with a disability can be quite exhausting. With graduation just around the corner, I can’t help but reflect on our history in public education, including those difficult years when we fought with school administrators over how to properly educate my son. While its teachers have always been kind and well-meaning, special education is underfunded, and intelligent children with autism can be particularly difficult to fit into public schools. Some of these wounds from our school struggles never fully healed.
While [my son’s] teachers have always been kind and well-meaning, special education is underfunded, and intelligent children with autism can be particularly difficult to integrate into public schools. Some of these wounds from our school struggles never fully healed.
These sensitivities are exacerbated now as we deal with graduation rituals and parties that are often inaccessible to children with disabilities and focus on honoring children in AP classes and college sports. There is no reward for children who are kind or who overcome obstacles. When Ian left the hospital last spring after a three-day stay to recover from a dangerous reaction to epilepsy medications, he insisted on going to school the next day with his mouth still grotesquely swollen. There should be some recognition for that.
Supporting strangers on the internet has helped me make peace with the past, so that I can face our next challenges with more optimism and hope.
In a few weeks we will attend the graduation ceremony. We will be giving very strong encouragement to children like Ian – hard working children who are often not celebrated in the same way as their peers. I had already made a mental note to bring my big handbag stuffed with tissues that day.
After graduation we will get down to business trying to find a way in the world for a smart kid with different social skills. There are not so many options for adults with disabilities, although colleges are starting to provide new opportunities for these students. Despite the fact that 80% of autistic adults are unemployed or underemployed, even those who have graduated from college, we hope Ian can overcome obstacles with his crazy tech skills.
Jonah won’t be able to help his brother get through his next hurdles a skills training program, community college and a job but for one night at least he was helped to give him the chance to dance at his prom, like everyone else. the other children.
Laura McKenna is a writer from New Jersey specializing in parenting and education. A PhD student and former professor of political science, she is currently working on a book called “Different, Not Broken: How to Make the World Safe for Disabled People and Their Families”. His articles, essays and opinion pieces have appeared in The Atlantic, HuffPost, USA Today, The 74, Edutopia and more. Subscribe to her newsletter, check out her personal blog or follow her on Twitter at @ Laura11d.
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