Draped in black polyester robes, millions of high school seniors will march across a football field later this month to collect their diplomas ― the exit slip from the neighborhood school that dominated their lives for 15 years. It’s also a finish line of sorts for the tearful parents who believe that they completed the nearly two-decade-long job of raising a quality human being. It’s a time of pride, triumph and butterflies about the future.
My husband and I will be two of those tearful parents of a high school graduate in a couple of weeks. We are beyond proud of our boy, Ian. But our pride is mingled with some irritation and resentment because students with disabilities like my son do not always feel included in this month of graduation parties and rituals. They often remain on the outskirts of school life, even during this special time.
My son Ian is on the autism spectrum, a disability that affects social skills, so he did not have a partner or group of friends to join him at prom earlier this month. Instead, his older brother, Jonah, took the day off from his summer job to escort Ian to the prom. While schools may be slow to find a place for families like mine, sometimes a good-natured big brother can make a difference.
From a young age, siblings of kids with disabilities often need to support their parents with caretaking responsibilities and watch their brothers and sisters struggle to complete tasks that nondisabled kids might find effortless. Conformity-loving teens can be embarrassed by their siblings’ behavior and appearance. Ian’s version of autism is relatively light, but his therapies and tailored activities were sometimes so time-consuming that I had less energy for Jonah.
At the same time, these relationships can provide powerful gifts for these siblings. They are able to learn to appreciate the beauty in differences and neurodiversity. Jonah told me that his relationship with his brother has changed the way he sees the world and, he believes, made him kinder and more patient.
“I can empathize with lots of different people,” he said. “I don’t judge people too quickly based on their behavior.”
Back when he was in high school, I suggested that Jonah write his college admissions essay about his experiences having a brother with a disability. He refused. Jonah said he didn’t want to feel pressured to say anything negative about Ian because his brother was only a source of positivity in his life.
“I just like the dude,” he said.
About a month ago, when I asked if he would accompany Ian to prom, Jonah promptly said yes. The afternoon before the big day, we picked up matching charcoal gray suits and scarlet bow ties from the local tuxedo rental shop. Jonah styled Ian’s hair with goop and attached his cuff links. As I took the obligatory photos on the front lawn, Jonah showed his red-headed brother some men’s catalog-style poses for the camera.
During the evening, Jonah texted me with updates about how Ian blended in on the dance floor and chatted with classmates. When they came home, I asked Ian how it went. Not one to emote, he simply said, “Great!” He had a huge smile on his face, so I knew it was a special night. Jonah said he also had fun that night because it was so enjoyable watching Ian have a good time. Both kids gave the empanada truck the school had brought in for the event a big thumbs up.
Proud of both boys, I shared a prom picture the next day with my small group of friends and followers on Twitter, writing, “When my kid with autism didn’t have friends or a girlfriend to join him at the prom, his big brother took the day off work and went with him. Two awesome kids.”
Shortly after I posted that tweet, we drove to upstate New York to go camping for the weekend. With spotty internet access at the campsite, my phone only came to life when we drove into town for dinner. My jaw dropped when I saw the responses to the prom photo. Ten thousand people from a variety of backgrounds and political affiliations had liked and retweeted the picture of my kids. They told me about their siblings or children with disabilities, while others simply offered congratulations. Some replied with pictures of their own disabled children with their siblings at prom.
Out there in the woods, surrounded by some tall trees and ticks, I felt the embrace of other caregivers, families and kind people everywhere. And that support came at just the right time.
I won the lottery with my two boys, but sometimes being a parent to a disabled child can be rather exhausting. With graduation around the corner, I can’t help but reflect on our history in public education, including those tough years when we wrangled with school administrators to properly educate my son. While his teachers were always kind and well-meaning, special education is underfunded, and smart kids with autism can be particularly difficult to integrate into public schools. Some of those wounds from our school struggles never fully healed.
“While [my son's] teachers were always kind and well-meaning, special education is underfunded, and smart kids with autism can be particularly difficult to integrate into public schools. Some of those wounds from our school struggles never fully healed.”
Those sensitivities are exacerbated now as we deal with graduation rituals and parties that are often inaccessible to kids with disabilities and focus on honoring kids in AP classes and varsity sports. There’s no award for the kids 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 medicine, he insisted on going to school the next day with his mouth still grotesquely puffed out. There should be some recognition for that.
The support of strangers on the internet helped me make peace with the past, so I can tackle our next challenges with greater optimism and hope.
In a couple of weeks, we’ll attend graduation day. We’ll cheer extra hard for kids like Ian — kids who are hardworking and often don’t get celebrated in the same ways their peers do. I already made a mental note to bring my big purse that day stuffed full with tissues.
After graduation, we’ll get to work trying to find a path in the world for a smart kid with different social skills. There aren’t as many options for adults with disabilities, though colleges are beginning to offer new opportunities for these students. Despite the fact that 80% of adults with autism are unemployed or underemployed, even those who graduate from college, we’re hopeful that Ian can beat the odds with his mad tech skills.
Jonah won’t be able to help his brother through his next hurdles ― a job training program, community college and employment ― but for one night at least, he helped give him the chance to dance at his prom, just like every other kid.
Laura McKenna is a writer from New Jersey specializing in parenting and education. A PhD and former political science professor, she’s currently working on a book, “Different, Not Broken: How to Make the World Safe for Disabled People and Their Families.” Her articles, essays and opinion pieces have been featured 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.