What You Shouldn't Say to a Special Needs Parent

The One Thing You Shouldn’t Say to a Special Needs Parent

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As a mother of a child who has a disability, I’ve heard and seen things that just absolutely break my heart.

Just today I saw an article discussing the symptoms of caregiver abuse, stemming from a care giver neglecting a young man with Down Syndrome. The young man died because his caregiver took drugs and fell asleep, forgot about him, and he died in the hot car.

Absolutely gut wrenching.

Photo by Jakob Owens on Unsplash

“They have it so much worse…”

I’m not sure why this one sentence is affecting me so much tonight, but I just wanted to get this off my chest.

If you have been following our journey with Jaxson, you would know that he has been diagnosed with a rare genetic disorder: Dyrk1a Syndrome. But, if you’re new to my blog, you can read more about our story here.

They Have it So Much Worse

Who would’ve thought these six words, this sentence, would have such an effect on me – and I’m sure others as well?

You’re probably thinking, “well they’re right, it’s not that bad. It could be worse.

But those words, that sentence, upsets me because it is as if they’re belittling our child, our story, like it’s nothing compared to another family’s journey. It is as if they are negating our struggles with getting him to gain weight, the endless hours of therapies, the many hours of driving to specialty doctors…

They’re pretty much saying our child with a disability’s symptoms and features aren’t as bad as others and that we shouldn’t “complain”.

Photo by Brytny.com on Unsplash

This is Why We Need a Tribe

This circles back to my recent post, 5 Reasons We Need a Special Needs Tribe, and why they’re so important. No matter the circumstances, the features, the symptoms… they don’t judge. They know that no matter the symptoms, the journey, that we are going through the same damn thing.

We all have that nagging fear of what will happen to our children when we are not here anymore.

We all have the stress and the isolation of caring for a child with a disability.

The uncertainty of the future.

Whether we have a place to change our adult children’s diaper.

If we are going to be judged for using the handicap spot because our child doesn’t look disabled.

WE ALL KNOW. No matter the level of need, we understand. It’s not a pissing contest, so we should stop comparing! Stop telling us It Could Be Worse.

My One Request to You

If you’re a mother, father, sibling, or even a friend of a typical individual, I want to leave you with this. If you have a friend or a loved one caring for a child with different needs, listen to them. You may not understand what they’re going through, but don’t say “It could be worse.”

I know “you mean well,” but often times it is better to be silent. Just being a shoulder to cry on, someone to lean on, is enough.

Until next time…

What was the most upsetting thing someone has said to you regarding your or your child’s disability?

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The One Phrase You Shouldn't Say to a Special Needs Parent

4 thoughts on “The One Thing You Shouldn’t Say to a Special Needs Parent”

  1. Yes! The very best thing a person can “do” for a parent of a special needs kiddo is to just be there. Don’t try to think of comforting words, as you will probably say the wrong thing (no matter what you say, it just happens this way). Just hug us and tell us that you’re here for us. That’s the best and most comforting gesture.

  2. I think I have selectively forgotten any really rotten comments, but I don’t like it when people say things like I don’t need to worry or “you’re doing enough” and discouraging me from working harder to find better treatments or a new doctor for my daughter.

    I sure do remember the few genuine comments that have made such a difference in my life, though! It is such a hard journey being a special needs parent, and at times I don’t believe I’m doing enough for my daughter because she will take as much energy as I can give her. Once her speech therapist told me how conscientious of a mom I was and said how hard I was working to help my daughter… I felt like a million bucks!

    1. Hey Jo, thanks so much for sharing. I don’t like the “you’re doing what you can / you’re doing enough” comments either. Unless they are in our shoes they will not understand why we go the extra mile for our kiddos! I do get a lot of great comments like you 🙂 My current favorite is the “boys are so happy, you’re a wonderful mom” when I feel like I’m not doing enough.

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