For years, I’ve been fighting for my 8-year-old son, who is neurodiverse, to be included — in classrooms, playgrounds, birthday parties and beyond. That’s why the appearance and inclusion of Democratic vice presidential nominee Tim Walz’s neurodiverse son in last week’s Democratic National Convention struck me as a watershed moment in disability culture in America. To be clear, my son does not have the same diagnoses as .
The Walz family reports that . My son, John, has , ADHD, and is nonverbal. affects an individual’s spatial-visual processing, not their ability to speak or read.
Individuals with NVLD may struggle with motor coordination and social skills. is a condition that, in my son’s case, means he can only verbalize a handful of words. It also means that he struggles with other forms of communication including using his — an electronic tablet with a library of words that he can use to write sentences.
We spend hours every week trying to add words to his vocabulary. It is painstaking, but we can’t give up. My son’s condition also means that he struggles to understand social norms, socialize with his peers, and look out for his own safety.
John could not have done what Gus Walz did at the DNC. It is beyond his capabilities to tolerate hours of speeches in an arena of thousands of cheering people and then stand up to call out “That’s my dad!” with joyful pride. I don’t know if John will ever be able to develop capabilities to navigate life with the level of functionality that Gus Walz displays.
That’s not what’s important to me. What’s important is that Gus is , and his family didn’t try to hide it. In fact, they proudly featured him front and center.
When we first enrolled in our local school district and notified them of John’s diagnosis, he was immediately routed out of the general education track into a class for children with varying levels of disability. This meant not going to the school two blocks from our house, but another one five miles away — which also meant an hourlong commute during Los Angeles rush-hour traffic. Since kindergarten, we entered school through a side gate around the corner from the main entrance, out of view of the neurotypical children and parents.
Sure, the side door was closer to their classroom, but sometimes I felt like it was intentional that we were out of view: I saw children screaming and sobbing at drop-off, sometimes throwing themselves on the ground and yelling “No!” — possibly the only word they could vocalize — as their parents walked away in tears, likely devastated but without options. John was always among the highest functioning in the class. Somehow, through a countless stream of new aides and specialists and therapists, he learned to write his name, the alphabet, and his numbers to 100.
He’s always loved attending school. Still, it was hard to pull out of our driveway every morning while streams of children and their parents bounced happily along the sidewalk to the public elementary school down the street. We drove past the school he would have attended if he was “typically abled” every day and watched kids and parents congregate outside, laughing and hugging, carrying science projects and poster boards for presentations and cupcakes for class birthday parties.
My heart ached with every commute. Ahead of this current school year, I was told John would move to a classroom directly next door to his current one. I went to visit, but that’s when it clicked: He needed to get out of a segregated classroom.
He needed to be part of the world, with everyone else. Getting him into our neighborhood school was one of the hardest things I’ve ever done. I brought years of documentation from his previous school, a lawyer, an advocate (a friend with her own disabled child), and the sheer, fierce will of a Mama Bear.
I fought for hours in an IEP meeting — arguing, then demanding, then straight up begging for his acceptance. The district finally relented, I think more out of exhaustion than anything else, and we were granted “inclusion” at his home school. We’ve been attending for two weeks and under no circumstances has it been easy.
It is John’s first time ever in general education. He can’t do the level of work that his peers can do. He’s never had the opportunity.
I walk him to school, then I work and stare at my phone, waiting for a call from the school saying that John is too disruptive, that his unusual noises are too loud, and that he’s just too much for everyone to let him be part of his community. Even with a legal document that says he has the right to attend, my chest is always tight with the fear that he’ll face resentment from teachers, staff or other parents who think he is pulling too much focus away from their own kids. And yet, this is how inclusion is happening for us — not on a globally televised event, arm in arm, in front of an audience of millions cheering us on.
For us, inclusion means taking that triumphant two-block walk to school every morning and hanging on to hope for dear life that those around him will be kind, patient, understanding and accepting. The prevalence of autism is now , with of those children considered to be “severely” or “profoundly” autistic like my son, John. As hard as things are for him now, this is as easy as they will get.
When John is 21 years old, he will age out of eligibility for the extensive support services he currently receives, as will his profoundly autistic peers. We have just over a decade to prepare for a flood of adults with significant disabilities to fall off what neurodivergent families call the Families of disabled neurodiverse adults may go from networks of support to absolutely zero help overnight. And of course, we live every day with the scariest truth of all.
Barring some sort of obscene tragedy, John will outlive both his father and me. He has no siblings, no cousins his own age, no network of support. He will be on his own and at the mercy of caregivers who will never love him the way we do.
I fight for inclusion because John needs it to survive. He will need to know how to access neurotypical spaces, how to interact with neurotypical people, and how to cope with a world that was not built with people like him in mind. I fight for inclusion because John needs it to survive.
He will need to know how to access neurotypical spaces, how to interact with neurotypical people, and how to cope with a world that was not built with people like him in mind. Gus Walz’s appearance at the DNC may not directly impact the daily fight for inclusion that my family faces, but it nudges open a door. It gives me courage.
It reminds me that there are other people in the world who believe children like my son have value. It gives me hope that the world is becoming more accepting of people like him. I’ll take every scrap of hope I can get.
Two days ago, when I opened John’s backpack, there was an invitation to a classmate’s birthday party inside — the first one John has been invited to in 5 years. I cried just two or three tears and told myself that I’m doing the right thing for him. I don’t know if the parent even knows there’s a profoundly autistic child in the class.
She just sent home invitations for everybody — including us, and that’s what matters. Liz Brown is a writer and mother living in Los Angeles. You can see more of her work and follow her on Twitter .
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