What TO Say to a Parent of a Child with Special Needs

Ambassador Jill Moerschell and her attorney husband live in Frisco, Texas, with their four kids, a cat, and two dogs. A political researcher and writer before children, Jill started writing again after the birth of her youngest son, who has Down syndrome. With his birth, Jill became more aware of the need to help the world see the worth and potential of every individual. Today on Flourish, Jill shares her thoughts on how we can more thoughtfully connect and support parents of children with special needs–and in the process, find true connection ourselves.

Jill and her son, Matthew

A quick internet search will yield several articles discussing what should not be said to a parent of a child with special needs, and they are important reads. But these helpful pieces may unintentionally block off or limit interaction with parents of children with special needs, which can already feel isolating at times. They could limit interaction with our children as well, and they are far too amazing and inspiring people for that. While I do recommend reading about what not to say to a parent of a child with special needs, learning what TO say to a parent of a child with special needs could bridge the gap between nervousness or uncertainty to insight and fresh perspectives. And connections between parents and between children. Now, I am merely one of many moms who have children with special needs, and I certainly do not understand all special needs (or even our own child’s diagnosis as he gets older). I can’t speak for everyone in this vast and diverse community. But I can speak from my own experience, and share a few things I have appreciated as a parent of a child with special needs:   

Ask us about our children and their interests.

Parents are predictable in that we like to talk about our kids and that is not any different for a parent of a child (children) with special needs.  I love it when people see our child with Down syndrome as a child first. I love people-first language. And our kids have interests that are often the same as your own kids or kids you may know. For example, among his many interests, our 4-year-old Matthew likes balls, bubbles, books, puzzles, climbing up slides, swinging, running, wrestling with his siblings, feeding his dogs, dancing, and not listening to his mom. Sound like any other 4-year-old you may know?

Share in our enthusiasm over our children’s accomplishments.

I’ll be honest, I’m quite proud of what our son can do and what he has already accomplished. He has so much more capability than what his diagnosis tells the world. As a parent of a child with special needs, I get to experience inspiration, determination, resiliency, and courage regularly. Do you enjoy the Olympics highlight stories that demonstrate the strength of the human spirit and encourage others to conquer their own challenges? We may have a few of those stories ourselves. And praise from others can go a long way.  A heartfelt “Wow, he/she is great at ____” is likely to be met with smiles from a parent.

Ask us about our child’s diagnosis.

You can look up “Down syndrome” or any other diagnosis or otherwise deemed “special need” in an encyclopedia or ask a doctor, but a parent’s real-life explanation beats medical literature or general society’s ideas every time. I often think about what I wish I had known as someone in general society about my son’s diagnosis before I became his mom and I am constantly learning more information about his diagnosis and about other special needs. There may be times that are not the best setting to ask this question, but an opportunity to clear up misconceptions at the right time and place in a is generally hard to pass up for a parent.

Ask us how to talk to other children about our children’s special needs.

This is one of my favorite questions and it frankly made me pause the first time someone asked me it. Kids have so much potential to positively change the way we see things. Their curiosity and ability to see people first are invaluable. Relatability and lifelong meaningful friendships can grow from these conversations too. Give me a child with accurate knowledge verses a child discouraged from asking questions or given the encyclopedia only version of a diagnosis any day.

Ask us to do things.

Medical needs or therapy appointments or social challenges may keep us from being up at school or sitting in the halls during dance lessons, but we want to feel connected to other adults too, so keep asking even if we tend to say no more than yes. It could be a girls’ night out or simply stopping by our house with a cup of coffee because finding a babysitter may be harder for us. Just ignore the kid-clutter and my sweatpants, please.

Offer to help.

About that babysitting thing … maybe you can babysit or know someone who could. Or, if we look like we need an extra set of hands at the grocery store, an offer to help unload the grocery cart would likely be met with appreciation. Or perhaps an offer to help in another day-to-day task like bringing over a meal or taking siblings to and from lessons. Even the smallest gestures of help can mean a lot.

Say nothing at all.

Sometimes not saying anything is what we need. You may not know what we are going through but can listen as we share. Or maybe we are overwhelmed while we are out and about as our child is having a meltdown and you give a nod of “you’ve got this, mama” as you pass by. Or maybe a hug if we seem to be doubting we are doing enough. Or maybe simply a little extra patience.

I often think that life as a mom of a child with special needs is just parenting a bit magnified. Many of the things I listed are things I would want said to me as a parent for any child. I have hopes and dreams for my child like I do for his siblings. I want Matthew to have friends and be included. I want him to have a good education and be challenged and seen for his potential and his gifts. I want him to knock down misconceptions and barriers. I do not want him to feel isolated. And so, I want to be approachable and engaged. Because children with special needs are world changers, and behind them are usually parents making sure they do all they can to help them get to it.