One of the hardest balances caregivers walk is managing expectations while still holding hope for a safe and meaningful future.
My nonverbal, profoundly autistic 22-year-old son, Skyler, is enjoying his adult day program and opportunities to be out in the community. But during a recent outing, he became dysregulated — smacking a few employees and tossing a container of straws to the floor. Not out of anger or intent, but because his body often reacts before his mind can catch up. Many autistic individuals experience this, yet moments like these are still heavy.
Skyler has always communicated with his hands. Even with Spelling to Communicate where he must point to spell out words or thoughts, his hands ARE his voice.
Body language is his only method of expressing frustration, discomfort, pain, illness, sensory overload, and emotional distress. When he doesn’t feel right, his body speaks first.
And we are left guessing. Playing an endless game of charades.
Is it a headache? A Crohn’s flare? Anxiety? Hunger? Overwhelm?
For almost the entirety of his life, we’ve worked tirelessly to help him replace slapping, banging, and throwing with more productive ways to communicate.
Progress happens, but it’s slow, inconsistent, and fragile. And because he frequently hits us at home, it naturally fuels our anxiety when he’s out in the community. We know his intent isn’t harm — but the reality is, his body doesn’t always cooperate.
In those moments, I don’t just see behavior. I see vulnerability. I feel fear — for his safety and for the safety of others. And my thoughts race forward to the future: What happens when I’m no longer here to advocate, explain, and protect?
How do we honor community inclusion while managing real safety concerns? How do we accept limitations without shrinking dreams?
The easiest solution would be exclusion — fewer outings, smaller worlds, more isolation. But that isn’t life. Community inclusion isn’t a luxury; it’s a basic human right. Our loved ones deserve to be seen, known, and welcomed — not hidden because their differences make others uncomfortable.
True safety is built through understanding, education, patience, and compassion — not isolation.
So, we keep showing up. We celebrate the wins. We navigate the hard moments. We advocate. We teach. We hope.
Because our children deserve futures that are not just safe — but full.
Full of dignity.
Full of belonging.
And full of hope.
