Six years ago, my life forever changed with two little words: “Down Syndrome.” Though the diagnosis seemed devastating at the time, my sweet Joey and his extra chromosome has blessed our lives in ways we never dreamed.
Still, I know what it feels like to be on your side of the fence—unsure of how to approach a special needs family, how to relate, how to see them. To help bridge the gap, here are a few things special needs families would love for you to know.
We get lonely.
Our kiddos don’t always interact the same way other kids do, which means they often miss out on play dates, birthday parties, and the like. But they love to be included, and so do we. Whether it’s meeting at the park with kids or an all-too-rare girls’ night out, we long for mom friends as much as we desire for our kids to have a tribe of their own.
We are just parents. It’s our kids who are amazing.
We so appreciate your respect and support, but we are not special or super-parents because we have children with disabilities. We are just people who love the children God has given us, the same as you. We have great days and hard days, the same as you. Our kids, though, really are pretty incredible. They work hard for the things they learn and do, and we love it when you notice and tell them how great they are doing!
Disciplining our kids can be tricky, but we are trying.
Many disabilities come with behavioral issues and/or delays, and knowing when and how to discipline is like a complicated dance you learn mid-performance. Sometimes kids who can’t communicate well act out in frustration, don’t understand social constructs or get easily overwhelmed with new situations or people. They’re also kids, so sometimes they just act up. We need a variety of disciplinary tools and a whole lot of patience to keep disciplining with love.
Believe me, I know what it’s like to be the friend who awkwardly says the wrong thing, and I can assure you that I have so much grace for the “wrong” thing said with the right heart. But I would love to offer just a few tips on the words we choose if I could.
First, so many of us without experience in the disability community have thrown around the word “retard” without thinking—myself included. But I see now just how hurtful that term can be, whether as a direct slur at a child with special needs or as slang (“That show was so retarded!”). It is a small task to pick a different word, but it can make a world of difference.
Also, it is easy to resort to platitudes when we don’t know what to say, but phrases like “I don’t know how you do it!” or “People with Down’s are so sweet!” can be frustrating to hear. We feel so much more seen and valued when you look at our specific family/child instead of lumping us into a broad category. Statements like “What is she learning in physical therapy right now?” or “He has the most adorable smile!” better facilitate discussion and feel more sincere.
Our lives are exhausting but wonderful.
Yes, we deal with medical issues, various forms of therapy, and behavioral issues, to name a few. And yes, it wears us down. To be sure, we have developed an inner strength we didn’t imagine before our kiddos were born. But we wouldn’t trade it because our kids are amazing. Parenting a child with special needs is not always easy, but it is so worth it.
In other words, yes, we special needs families have some extra stress, and sometimes we could use a little extra help. But you don’t need to feel sorry for us—in fact, sometimes we feel sorry for you because you don’t know what you are missing!
What is something you would like to ask a special needs parent?
Katy Epling is a writer and speaker who loves to share about motherhood, special needs parenting, faith, and more. She and her husband Jon live in northeast Ohio with their three wonderful children.