What Every Special Needs Family Wishes You Knew


special needs family

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.

Words matter.

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. {Tweet This}

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?

Comments


  • Linda Starnes

    As the parent of two young adults, each with their own set of varying abilities, gifts and talents, significant medical challenges, and medical/educational labels, we have always seen our family as being on the “same side of the fence” and not be looked upon as the “special needs” kids, parents, family. We are no more special than anyone else, and everyone has needs — they are just different needs. We are a family of four, and just one aspect of our family is that our two children have disabilities. They are made in God’s image, and like everyone else, are invited to the same table with Jesus to partake in a full, inclusive life.

    The more we choose to separate those with disabilities — both physically/literally, as well as with our words — the more we paint a picture of “us and them.” Life hasn’t been easy, and no legislation can force a change in the attitudinal barriers that we constantly encounter. But the more we all live life together, in community, at school, in recreational arenas, at work, and within the full life of our places of worship, the more the gates to the fences will be flung open.

    So my added advice to families who don’t happen to have a loved one with a disability — teach your children from the start an understanding and respect for all, not pity or separateness. Remind them to simply smile and say hello when they encounter another who may vary in some way from their assumptions of typical. Build family friendships with all God’s people, even those with disabilities, and encourage your children to do the same among their peers. Raise your children to understand we all have so many more similarities than differences: we have desires of trust, relationship, and belonging; we know the difference between a kind word and one voiced in disrespect and unkindness; we feel the difference between a touch or gesture given in love versus a rough and impatient touch . . . or the avoidance of touch all together; and that we all have hearts that beat and we bleed when hurt. Focus on all the many ways we are the same and relish the fact that even within the sameness of God’s image, He made us all so wonderfully and fearfully unique!

    • Layla

      Linda – So beautiful! Indeed, His image and same table… thank you for educating my mind and my heart!

    • This is great advice. Thanks for weighing in, Linda!