When you’re parenting a disabled or special needs child, you get used to people offering help in the most socially acceptable — and least useful — way possible:
“Let me know if you need help.”
That phrase… It sounds supportive. It looks supportive. But in the trenches, it often feels hollow. If I could tell you how it really feels to hear it through the turmoil of our days, you wouldn’t say it at all.
Here’s the truth: that phrase puts the weight back on me. It makes me responsible for not only asking for help, but also designing the help, when I barely have the capacity to make it to the end of the day. It feel like one more unbearable weight placed on my loaded back. When the tears, the sweat, and the muck of the years have already cemented on my face, my heart, my spirit, you place the weight of platitudes on me and think of it as help…let me explain.
The Invisible Burden of “Let Me Know”
When you’re living in survival mode — juggling medical care, school battles, therapy schedules, and unpredictable, even violent, behaviors — “let me know” isn’t a gift. It’s another task.
It’s asking me to:
- Inventory my needs (when I don’t have time to breathe)
- Prioritize them in a way that feels acceptable to you but not “too much” of a burden
- Explain them in detail so you’ll understand
And often? By the time I’ve thought through all of that, it feels easier to just say, “I’m fine.” Because explaining the fire while burning alive is exhausting and a reminder of the flames.
What It Looks Like in Real Life
Picture this: I’ve just wrestled my son through a meltdown where I have emerged bruised, bitten, and hurt. I’ve cleaned up a bathroom disaster, rescheduled an appointment we waited months for, and now I’m staring at a sink full of dishes while he cries in the other room. My back hurts. The dog needs to be walked, and my phone buzzes. It’s a friend sending that simple, loaded phrase: “Let me know if you need anything.”
I love this person. I know they mean well. But in that moment, my brain is fried. I can’t think beyond the next five minutes. I’m not about to type, “Yes, could you come over, fold two loads of laundry, start dinner, and sit with him so I can shower for the first time in three days?”
Because that feels needy. Because I don’t want to dump my chaos on them. Because I don’t know if he might hurt her. Because finding the words for the reality here takes more energy than I have. And honestly- it’s embarrassing. How could I possibly explain why this chaos exists here to another parent who seems to have it all under control?
So I send the default reply, with heaviness in my heart and a frog in my throat: “Thanks, I’ll let you know.” And we both move on — but nothing changes here. Maybe things get a little bit worse.
Passive vs. Active Help
Passive help: “Let me know if you need anything.”
Let’s be honest. These are the words someone speaks when they don’t know how to help, and maybe they don’t want to learn how. It helps YOU feel better to say them. You get to feel like you haven’t ignored someone you know is struggling even though you haven’t actually helped. These words are about you. I know that feels harsh, but getting special needs parents the help we need means facing some harsh truths.
Active help: “I’m bringing dinner on Thursday — chicken or vegetarian?”
Helping someone means doing , taking specific action. Don’t be afraid to “invade our space” or “be an imposition”. Believe me when I say we are very used to therapists, doctors, case workers, and all kinds of people knowing everything about us, our homes, our kids, our lives. Go ahead, drop by with food. Stop in with yard tools ready to work. Do whatever you think can help.
Because one version of help leaves me holding the mental load. The other removes it from my hands.
Passive help says: “I’m here if you do the work to use me.”
Active help says: “I’ll meet you where you are.”
Which kind of friend – of human – do you want to be?
What Real Help Looks Like
If you truly want to support a parent in the trenches, a person in need, skip the vague offer, the YOU-focused placations, and show up with something specific:
- Offer something concrete: “I’m free Saturday morning — can I take your other kids to the park?”
- Do without asking: “I mowed your lawn this morning — hope that frees up your afternoon.”
- Anticipate needs: If you know Tuesdays are back-to-back therapies, drop off dinner without texting first.
- Offer emotional support that doesn’t require a reply: A simple message: “Thinking of you. No need to respond.”
For Allies Who Mean It
We — parents of disabled and special needs children — are not fragile. We are forged. But we are stretched thin, fighting wars with armies of one, and the smallest act of concrete, active help can change our day- maybe more.
I know this message is raw and unapologetic. But, I’m in the the trenches everyday. So many of us are. And if you want to support a family like mine, stop making us walk you through battle plans. Show up with purpose. Take a task off our plate without making us ask. Because when the fire is burning all around you, the best help is the kind that doesn’t wait for an invitation to put it out.
Real help is action without asking permission. And it matters more than you think.
⚔️ We are Parenting Through ASD — Relentless. Battle-tested. And always here.
Parenting Through ASD 