What Not to Say to a Disability Parent (and What to Say Instead)

Most people mean well. I truly believe that. But when you parent a child with disability, you hear the same comments again and again, and some of them sting more than people realise.

This isn't about shaming anyone. It's a little guide for family, friends and the lovely stranger at the shops who wants to say the right thing.

1. "I don't know how you do it."

It sounds like a compliment, but it can feel like you're being put on a pedestal or set apart. The truth is, we do it because it's our life and we love our kids.

Try instead: "How are you going this week?" or "Can I drop dinner over on Thursday?"

2. "Everything happens for a reason."

Some families find comfort in that. Many don't. It can make a hard situation feel like it's being explained away.

Try instead: "That sounds really hard. I'm here."

3. "What's wrong with him?"

Our kids aren't something to be fixed. They're kids, with personalities, favourite songs and opinions.

Try instead: Say hello to the child first. Ask what they're into. Lloyd will happily take a compliment on his love of ACDC.

4. "At least..."

"At least he's happy." "At least it's not worse." Starting a sentence with "at least" usually shrinks what someone is going through.

Try instead: Just listen. You don't need to find the bright side for us.

5. "Let me know if you need anything."

It's kind, but it puts the job back on a tired parent to ask. Most of us won't.

Try instead: Offer something specific. "I'm at the shops, what can I grab?" "Can I take your other child to the park on Saturday?"

What helps most

• Include our whole family in invitations, and check the venue is accessible
• Learn a little about our child's condition
• Talk to our child, not just about them
• Keep showing up, even when we cancel

If this post made you think of someone, send it to them. Small changes in what we say make our community feel a lot less alone.

Maya, RareWear founder and Lloyd and Elsie's mum