What Not to Say to Parents of Disabled Children (And What We Wish You'd Say Instead)

August 2021 | Question of the Month
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what not to say

Ahhhh, what a trick. When someone is going through something so wholly different than we’ve experienced before, it’s hard to pluck up the courage to say something. What if it’s the wrong thing? What if it makes things worse? 


As parents with disabled kiddos, this has undoubtedly been the case for our friends and family. And while the good intentions often shine through, we’ve all been on the receiving end of less-than-helpful (and sometimes downright painful) comments from our loved ones. In answer to this month’s question, parents give the tea on what comments make them cringe. And if you’re left feeling like you can’t win, don’t worry. We’ve got a good list of things parents love to hear. 


It’s important to point out that these are the opinions are not representative of all parents. But there are themes that can point us in the right direction. 


In reflecting on the responses and my own experience, I had a realization: Parents want their humanity acknowledged. And, we also want our children’s humanity acknowledged too. Most of the cringy comments about our superhuman capacity feel untrue. They don’t validate our struggle and human-ness. They make us feel “other”.  The same goes for our children. They are diverse, wonderful humans who deserve interaction and love just like any other children. 


So, as basic as it sounds, we just want you to realize that we are humans. And so are our kiddos. 


Pro tip: Before speaking, ask yourself if it makes us or our children feel less or more than human. Yes? Rethink it. No? Then go for it! 


When in doubt, validate our joy and pain, and then offer to do our dishes. 😉


A huge thank you for the dozens of parents that contributed to this amazing list! You rock!

"Will he/she ever_________?"

—@temberbower @kimberlyy.ana @kieralouiseryan

"You're such an inspiration."

—@kris10_ann

"God doesn't give you more than you can handle." 🙄

—@kris10_ann @the_destroya @nora_the__explorer @lysamariemancini

"It doesn't look like anything's wrong with him/her!"

—@kris10_ann

"At least she's smart!"

—@kris10_ann

"But she's so pretty!"

—@kris10_ann

"At least your other kids are normal."

—@joyfulblondie

"Will he ever be normal?"

—@joyfulblondie

"But he seems pretty 'normal'!" (As in, not intellectually disabled.)

—@joyfulblondie

"I'm so sorry."

—@joyfulblondie @emilyyoung3 @the_fourvaths @doniadouglas

"I'm sure they'll reach that milestone soon."

—@drvgeorge

"God gives special kids to special parents."

—@emilyvmilligan @klovestone @just.a.tidge @brandy_bsaunders

"I understand. "

—@hopefulmandm

"What's wrong with him/her?"

—@lifeintechnicolorgray @mama.pod @kieralouiseryan @k8_wds

"Are they crawling yet?"

—@adoptive.foster.medical.mama

"I could never do what you do..."

—@stefxxrae

"I know someone who had a nephew that...."

—@abbiexmiller

"Did you do something different while pregnant with him?"

—@thegarg_family

"I could never do what you are doing." (Translation: I can't empathize.)

—@debnielsen7387 @kellyrlinn @erinread @tereseboughtin @chandra_adelle @ms_maarje

"He looks normal." 😂 That one makes me laugh. 

—@theamazinglifeoferic

"He/she will defy the odds."

—@theamazinglifeoferic

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

—@kellynelliott4 @edelamaine @shortbutfeisty

"Well, they'll be doing ______ soon, don't worry."

—@mollie_d_johnson

"Any suggestion of what they think caused the disability in utero? Vitamins???"

—@lorenecm

"He's immune-compromised, but how do you know he can't handle COVID?" (face palm)

—@fas5_fearless_fight_mecp2

"They'll walk/talk etc someday."

—@kimberlyy.ana @mrshouser105

"It could be worse."

—@loeyjessica_

"You're so strong, I don't know how you do it."

—@rhiamarie24 @emilyyoung3

"Nothing is wrong with her."

—@aholt.haus

"But he looks fine!!!"

—@vidalou

"Oh yeah, my son has allergies/ADHD/asthma/needs a tutor, I totally get it."

—@vidalou

Conveying with tone/words that your child's disability is SO tragic and awful to them.

—@kerry.tirrell

"I really hope he eventually learns to [insert something he may/may not do like walk, talk, etc]."

—@kerry.tirrell

"Well, he's certainly a challenge" --his doctor. Still kick myself for not saying, "No, he's a joy."

—@kerry.tirrell

"What happened to him/her?"

—@tracey2011

"At least they can [some ableist comment]."

—@loeyjessica_

"My (friend/relative/acquaintance) had seizures, and they're fine."

—@reneejustine

Send video/pics of a kid with a totally different disability and say it reminds them of your kid. As though all disabled people are the same.

—@kerry.tirrell

"But he'll grow out of it, right?"

—@reneejustine

"How long do they have to live?"

—@kieralouisaryan

"So have they figured out what’s wrong with her?"

—@ashnik517

"You were chosen to be their mom. You can handle it."

—@mrshouser105

"She will outgrow it."

—@cindyyanasha

"Ahhh, but you wouldn't change him, would ya??" Errrm, yes!  💙

—@sarahlouisedeeming

"Surely you are going to have another baby."

—@edelamaine

"But she doesn't look disabled."

—@emilyyoung3 @the_fourvaths @katiebpeterson

"You should say 'special needs' or 'differently abled', not 'disabled'."

—@joyfulblondie

"You've got a place reserved in heaven for you." (face palm!)

—@brandy_bsaunders

"Everything happens for a reason."

—@maevevalentina @lysamariemancini @katiebpeterson @eburkebuckley

"All kids are hard."

—@katiebpeterson

"It's God's plan."

—@eburkebuckley

"Well, at least she is/is not______."

—@emilyyoung3

Don't downplay our worries. E.g. all kids fall, yes. But mine doesn't have the reflex to catch himself.

—@mywibblywobblywonder

"This is a result of your sins/family curse."

—@thetravelinghester

"You are so strong. I couldn't do what you do."

It makes me feel even more alone and like I can't share the hard parts (even though I know it isn't said maliciously). We can only learn how strong we are when faced with difficult experiences (just like you can't be brave without being afraid). We ALL have the ability to do what medical parents do because all it is at the end of the day is pure, unrelenting, unconditional love. Yes, it is really hard. Yes, it can really suck. Yes, it takes time to learn and adjust to, but I am not stronger than you. I just have no choice and I love my kid to ends of the earth."

—Corey C.

“How long will she/he have (feeding tube/ oxygen etc) for?”

—Kristy M.

Any medical advice.

—Kristy M.

Calling their child a NICU buddy when they were in a SCBU for 2 days.... rather than 200.

—Kristy M.

"Hi! What's her name?"

—@temberbower

"You're doing a great job."

—@kris10_ann @cindyyanasha @reneejustine

"Can I bring you lunch/dinner/snacks?" vs. "Let me know if I can do anything."

—@nataly.lorentz @vidalou

"How supportive have your doctors and providers been for your child?"

—@ashnik517

"Here, let me help you with that."

—@edelamaine

"How does their equipment help them and live their best life?" Don't forget to engage with the child. 

—@lifeintechnicolorgray

We spend a lot of time talking about defects with doctors and schools, so tell us positive things you see them do!

—@stefxxrae

Express condolences for the difficulties (hospitalizations, IEPs, etc), never the child. 

—@stefxxrae

"Let me help you by (insert specific thing)."

—@emilyvmilligan @kerry.tirrell @debnielsen7387

"I'm trying to educate myself. Do you know of resources about______?" or "I've never heard of that, but I'm going to read about it later so I better understand it."

—@chandra_adelle @vidalou

"How are you?" ...but not when you're obviously dealing with some hard 💩!

—@chandra_adelle

"What's something new your kid is excited about?"

or

"What's her diagnosis? I would love to learn more about it."

or 

"Tell me more about him/her!"

—@mollie_d_johnson @nora_the__explorer

"You are exactly who your kid needs."

—@katiebpeterson

"You don't need to apologize for your child's needs or behavior."

—@vidalou

"You don't need to apologize for not texting back."

—@vidalou

"Would you like to bring your child over for a playdate?" (Ask repeatedly, not just one time.)

—@vidalou

"What week is the appointment/surgery/etc so I can be sure to check in if you need anything?"

—@vidalou

"I would love to include your child in this activity. How can I help them feel included?"

—@brianna.alcox

"What is the easiest or best way for me to communicate with your child?"

—@brianna.alcox

"I am sending you food right now."

—@theamazinglifeoferic

"This sucks, I'm sorry."

—@vidalou

"You don't need to apologize for talking about your child."

—@vidalou

"I care about your child."

—@vidalou

"I love_______ about your child's personality!"

—@eburkebuckley

"Thank you for sharing about your child."

—@loeyjessica_

"I am here for you."

—@loeyjessica_

"Your child is so cute" and "they are so loved" and "they are so happy."

—@loeyjessica_

"How are you? Can I help? Need to talk?"

—@rhiamarie24

"I'm glad I know you and your child."

—@joyfulblondie

"I see you going WAY ABOVE expectations, mama. Can I bring you supper tonight?"

—@mrs.samantha.kenning

"Don't forget about your self-care!" 😉

—@bbe_cali

My aunt responded perfectly. She said, "I'm sorry, I don't know much about Down syndrome. Can I ask you a bunch of questions?" I was thrilled to answer all of them!

—@braxton_strong

"Your babe is beautiful."

—@eburkebuckley @reneejustine

"I'd love to learn about your kiddo's medication/medical equipment so I can babysit!"

—@eburkebuckley @kerry.tirrell

When I mention a book or resource about disability: "I'm going to read it too. I'd love to discuss it with you!"

—@kerry.tirrell

"What is he doing in therapy lately?"

—@reneejustine

"Your child is awesome."

—@kerry.tirrell

"I would love to know more about how to advocate for him/her/your family."

—@thetravelinghester

Something nice about their child's character or talents.

—@ms_maartje

"I'm going to love your child no matter what. No matter who they are or what they are like."

—@maevevalentina

"You're making tough decisions the best way you know how and feel is right for your kiddo."

—@fas5_fearless_fight_mecp2