Parenting a Disabled Child: Finding My Voice and Building a Supportive Community

Parenting a child with a disability is hard in ways I didn’t have language for at first. It’s the love-so-big-it-hurts kind of hard. It’s 2 a.m. Googling, waiting-room pacing, “please call me back” emails, and tears in the car after a meeting (and, let’s be honest, in the meeting) where I nodded politely and then thought of everything I should’ve said. If that’s you right now, you’re not failing, you’re learning a new language while raising a whole human. That’s a lot. Be gentle with yourself.

Finding my voice didn’t happen in one brave speech. It showed up in tiny sentences I practiced in quiet and not-so-quiet rooms, typed into my Notes app: “This doesn’t feel right for my child.” “Can we slow down so I can understand?” “What would support look like if we assume competence?” I started my “J” binder—heavy enough to count as a workout but it holds what I need so I’m not scrambling to remember everything. I also began sending a one-page snapshot of who my daughter is, her strengths, what helps, what doesn’t, to her teachers each year. And yes, now that she’s in high school, I still do it. I may walk in the room steadier and my voice may wobble less but I will never not be nervous.

At the beginning, my husband was gone a lot, often deployed to a war zone, so many days it felt like I was doing this alone. I wasn’t, though. My people were in those beige waiting rooms where our kids got therapy. We traded snacks, the names of evaluators who actually listen, and the kind of nod that says “me too” without a speech. When my son was born, the waiting rooms came with a new kind of guilt, so much time sitting, so much calendar math. Community didn’t erase the hard, but it made it bearable. He made friends with siblings; we set up playdates so only one parent had to sit in the waiting room. I made my own plans for how I would change this world for the better, knowing it wasn’t just my daughter who needed support.

But let’s be honest: not every crowd was kind. I’ve walked into parent groups and immediately felt like an outcast. I’ve met the ones who made me cry by blaming me for things I didn’t cause or by commenting on my child’s behavior. It took time to learn that not everyone deserves my time or energy. People will have opinions; I don’t have to accept the delivery. There’s no such thing as a “regular” family, there’s only what works for yours. There is nothing wrong with my child. Different is not less.

My daughter didn’t speak until she was four. My job was (and is) to pry open doors and make sure opportunities were there. Today she’s in general education and brings home good grades, but socially it’s still hard. She often doesn’t feel like she belongs, and when she doesn’t, it’s harder for all of us to feel it, too. Her life will always be different than I imagined and different from her brother’s, but it isn’t wrong. It’s hers.

If you don’t have “your people” yet, start small. One local parent group. One online space that feels kind, not chaotic. One friend who will sit on the phone while you draft an email. Ask for practical help: “Can you read this with me?” “Can you come to the meeting with me?” “Can you remind me to eat before the meeting?” That’s not weakness; that’s how we keep going. And when you have a win, no matter how tiny, share it. We collect those together.

Here’s what I wish someone had told me sooner: you’re allowed to change your mind, pivot plans, and try again. You’re allowed to ask “why,” “what if,” and “what else” until it makes sense. You’re allowed to protect your child’s joy as fiercely as their services. You’re allowed to be tired and still be a good parent. We’re out here, finding our words, comparing notes, and building a kind of community that makes the load lighter. Come sit with us.

I’ve changed my mind on language, too, and that’s allowed. When my daughter was first diagnosed, I was told to use person-first language (“person with autism”). Listening to autistic voices, I learned many prefer identity-first (“autistic”), so my language shifted. For us, that change isn’t trendy; it’s respect. We tell our daughter the truth and don’t shy away. A label isn’t a cage; it’s a key, a way for her to understand herself, ask for what she needs, and find her community before the world tries to label her on her behalf.

And I will keep fighting for her belonging, even if that means making other people uncomfortable sometimes. My goal is to move the goalpost: if she is asked to change daily to make others comfortable, then others can change to make her comfortable. The world continues to change, and that’s a good thing.

If you’re somewhere on this road, tired, Googling at 2 a.m., trying to find your voice, borrow this for now: you’re not alone, you’re allowed to set boundaries, and you’re doing a good job. Take what helps, leave what doesn’t, and keep going. Your family’s version of “regular” is exactly enough.

P.S. If you need backup, EduSolutionsKC is here for your whole family, therapies for your child, sibling support, private Facebook spaces to vent or ask questions without judgment, and in-person/virtual groups to meet parents walking the same road. Reach out; you don’t have to carry this alone.

How EduSolutionsKC can help:

• Advocacy and Consulting Services

• Parent and Sibling Support

• Private Facebook page 

• Speech, OT, ABA, Tutoring

Book a consultation with EduSolutionsKC today!