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!
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?