Five Things You Should Never Say to the Mom of a Special-Needs Child

7

Since we first learned of my daughter’s diagnosis, I have been amazed at the way my friends and family responded. We were supported and loved by more people than I could have imagined, and I was reminded that so many people really do care!

somber mother and baby

I have also learned that many well-intentioned people say some of the worst things without even realizing it, and their words sting long after they’ve forgotten what was said.

I thought it was time to share some of the things you should NOT say to the mom of a special-needs child. Please know my heart in this — not to shame you, but to help you re-think your words when trying to show you care.

“What’s wrong with her?”

This one always irks me, although my response is usually metered by the tone and circumstances of the question. Some people are genuinely curious and just want to know more about my child. Unfortunately, when they phrase their question in this way, they not only imply that they think my child is “wrong,” but also could plant the seed in her mind that she is somehow bad or less than others. It puts me on the defensive and usually requires me to politely correct them: There is nothing “wrong” with my child.

A better way to ask a mom about her child is to simply say, “Tell me more about [name].” This question builds bridges and leads to greater understanding and friendship. This shows you care. You used my child’s name. You showed interest in her life and mine. Now I want to tell you all about my amazing daughter who overcame every odd and who paves the way for others! 

“God never gives you more than you can handle.”

Nothing slaps a struggling mom in the face more than this misused and misunderstood saying. And sadly, it usually comes from well-intentioned people.

In the Bible, we are told, “No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it” (1 Corinthians 10:13, NIV). Somehow, Christians turned this into the phrase above. This is not only unhelpful and untrue, but also can be hurtful to many moms who feel as though their feelings are not valid or their faith is simply not enough.

The truth is, as moms of medically fragile children, we ARE given more than we can handle much of the time. But this shouldn’t come as a surprise. Jesus reminds us of this in John 16:33: “. . . In this world you will have trouble. But take heart! I have overcome the world” (NIV).

Struggle and suffering are part of the human condition, so please don’t make a mama feel worse about herself and her circumstances by posting these pithy words on her Facebook wall. Instead, remind her of the truths in her life: She is not alone, she is loved, and with God’s help she will survive even the hardest days.

“Have you tried this (fill-in-the-blank) therapy? My cousin’s husband’s sister tried it and . . . .”

Whenever people approach me with some twice-removed family member’s recent therapeutic treatment, I want to laugh and cry at the same time. Do they not know what my life looks like? The number of doctors and therapists who regularly treat and assess my child? The number of hours I spend online researching relevant therapies or talking to other families?

I realize this is often said out of kindness or from a need to somehow relate to our experience, but please . . . just don’t. It shows a lack of understanding about my child’s rare condition, and then requires me to politely (exhaustingly) explain to you why it’s not the same. A better way to relate would be to ask me about my child’s interests and achievements. I will gladly share with you about her current therapies and goals. Just remember that relating your experiences to mine isn’t always the best approach.

“Let me know if there is anything I can do to help.”

This one is tough, because there is nothing inherently bad about this statement. It’s just a little . . . passive. And quite frankly, it puts the burden back on the parent who needs help in the first place.

There are always things you can do to help a friend whose child has special needs. A better thing to say is, “I’d like to help. Can I bring you a meal? (Or drop off some groceries? Send a gift card?)” Or better yet, just do it! If you see a need, meet it. A family in the hospital or coming home from the hospital can always use a meal, or cash to pay for parking and food. And if you want to help but aren’t sure how, ask a close family member or friend what might be needed most

Asking anything about future children, EVER.

I am shocked by the number of people who think it is okay to ask a couple about their future family plans. Throw in a known genetic condition, and the feelings around this topic become even hairier. Some people are surprised to learn that a family with a special-needs child would gladly accept the risk of having more with the same needs! Or that pursuing fertility treatments with genetic testing is on the table. Each family will make choices as they feel led or as God designs. So really, your input or opinion here is not needed.

I’d love to hear your feedback on this, especially from other special-need mamas out there. What are some of the things you wish people did not say? Or things you think could be said better?

Previous article15 Years Married :: Helping Each Other Grow
Next articleThere’s No Wrong Way to Load the Toilet Paper
Jenny is a West Texas girl who married her best friend and Baylor sweetheart, Chris, in 2005. She spent her 20s running marathons and traveling as a writer and photographer for a global ministry, Buckner International. In 2012, she and Chris became parents to son Miller and in 2015 to daughter Emmeline, who was diagnosed with a rare neuromuscular disease, Spinal Muscular Atrophy (SMA) – type 1. Now Jenny lives in Burleson, Chris’ hometown, and focuses her time on caring for her daughter and helping other families of medically-fragile children. Jenny loves Jesus, family, good coffee and wine, meaningful conversations, musical theater, shopping, and porch sitting. And an occasional run, or walk. Whatever. (Photo courtesy of: Uneartherd Photography).

7 COMMENTS

  1. One thing that irks me is when someone will ask “is your other child normal”? “Normal”. That is just a rude word. I prefer the word “typical” or how about just don’t ask a question like that. Both my children are normal and what is normal anyway??

    • I love that Kate, yes, what is normal? Are you normal? Am I normal? That’s definitely another one of those comments that I usually laugh about and say, “Well, he’s not affected by her condition but he’s definitely not normal and neither am I!”

  2. Oh my goodness, Jenny! Thank you for putting into words what echoed through my head all those years when our one and only child was young. He is 20 now and we have walked a uniquely joyful, painful, fearful, thankful path since we adopted him at four months old. Our questions and fears still exist, and we see how his future is going to be so different from the typical journey of his peers. But not one minute of his future is unknown to our God, so we hold onto Jeremiah 29:11 till our faith-knuckles turn white: He knows the plans He has for our son… plans to give him a future and a hope. Your article was spot-on in every way and I especially appreciated how you have very effectively clarified the misinterpretation that people (believers or not) cast onto 1 Cor. 10:13. Hope to read more of your insights soon.

  3. Thank you Cindy!! This means so much to me that you commented and shared your story. I’ve learned so much in the past few years and just want to help others see a little into our wonderfully unique world where we see things with different lenses. My daughter has truly changed me for the better and strengthened my faith and trust in God.

  4. Are you going to have an abortion if you (current pregnancy) find out your baby has down’s like your other one? I would she said, and then lists the reason why. I didn’t slap her as I wanted to but definitely avoided her toxic waste.

    God has given me more than I can handle, more than once and I agree that the scripture verse is taken out of context.

    Do you think he will be cured one day? Down’s syndrome ??????? Think not, he’s turning 30 soon.

    All said and done, I love him so much and wouldn’t trade him for anything.

  5. Thank you! I’ve learned from this post – I’ve never said any of the “thoughtless” (began to say stupid, but THOUGHT better of it, lol) to parents, but the ideas of how to help are fantastic!!!

  6. I’m so glad it was helpful. I truly think people have the best intentions (most of the time) but just don’t always know what to say and these are the words that come out. I’m so glad it is being shared & read! Thank you for reading and for your comment. ❤️

LEAVE A REPLY

Please enter your comment!
Please enter your name here