“Why does he have that chair?”
“What’s wrong with him?”
These are questions that children often ask about my son, Liam. Sometimes they ask me directly. Sometimes they ask their parents. Sometimes they yell the questions to any listening ears. Many children stop in their tracks to stare. For our family every grocery store trip, library visit, church event, or walk in the neighborhood brings us into contact with people who have questions.
People notice Liam’s chair. They notice that he cannot talk. They hear him make loud noises. They see that his body moves very differently than most. I understand their curiosity. Liam is different, and people just want to understand.
Children are honest and open in their curiosity. I appreciate that they ask questions. Certainly there are days when I want to avoid stares and questions. I want to blend in with the crowd. Yet I know that it is a great service to Liam when we use every teachable moment. If people can become comfortable with Liam and can learn to interact with him appropriately, all of our lives will be richer.
Children’s questions are often intercepted by chagrined parents. The parents apologize and pull their curious children away from Liam without allowing us to say hello or answer their questions. This leaves everyone feeling awkward.
Ironically, when I am out with only my daughters and we meet individuals with special needs, I have trouble knowing how to behave. It is so difficult! The social cues are confusing, any assumptions that I have made are usually wrong, and I overthink every word that I say. Being Liam’s mom has helped me to really think about these situations and how we can all respond better. I have found following these guidelines to be helpful as I introduce my children to someone new who has special needs:
- Remember that people with disabilities are people first. The disability is certainly a part of them, but it isn’t who they are. They have feelings, ideas, wishes, and hopes just like you do. I explain this to my children, and we talk about what each of my children likes, thinks, hopes, and wishes. We talk about how every person is similar in these ways even if he cannot communicate this or if she looks or moves differently.
- Start by smiling and saying hello. Even if your child started the interaction with a loud question, parents of children with disabilities understand that this happens. We are human. Our kids are too. Don’t lose this teachable moment because of your own embarrassment. A smile and a kind hello are so much friendlier than pulling your child away from us. Most days, we will even take a minute to explain the wheelchair to your child or to introduce Liam.
- Acknowledge Liam, not just his family. Liam won’t answer you. He may not even look at you, but say hello to him. Look at him. Use your regular voice. You don’t need to talk extra loudly. He is a school-aged kid, so baby talk is unnecessary. I will help you out by interpreting his response. Liam is so valuable and worthwhile, and your hello to him helps both him and me see that you know this.
- An “I’m not sure” is better than a wrong or made up answer. This is always the truth with kids, and it certainly applies to answering their questions about special needs. While “God made him that way” is certainly true of Liam’s inability to talk and walk, it oversimplifies Liam’s differences. It doesn’t answer the child’s questions. It is not true of why he is in a wheelchair (which is usually what kids want to know). Liam wasn’t born with a wheelchair. For a small child, an age appropriate response that might be better would be to explain that Liam’s brain doesn’t send the right messages and so his body never learned to walk or talk the way that most children do.
- If you and your child are talking with Liam, tell your child a few things that are similar about him and Liam. “Do you like books? Liam loves to listen to books.” This helps your child to see Liam as a little boy. Conversations like this are a great way to become Liam’s new friend. They also help your child understand that Liam is similar to him in so many ways.
- Examine your own responses. When I interact with others who have special needs, I am always worried about doing or saying the wrong thing. My kids pick up on this no matter how kind my words are. The easiest way I’ve found to overcome my own fears has been to get to know real people with special needs. Every single person is different, and my comfort with differences grows as I get used to being with all sorts of people.
- Reassure your child. Recently a girl told my daughter, “Your brother is just creepy.” What people don’t understand feels scary to them. It may seem obvious, but children need to be reassured that children like Liam are not scary. They are actually very much like every other child. They like to play. They want to have friends. They want to be loved. Explain to your child that children can be born disabled or become disabled from an accident. You cannot catch disability from another child. Being friends with them is perfectly safe.
- Do not reward or congratulate your child for being friends with another child who has special needs. Being a friend to someone with special needs is not a charitable act or an act of kindness. It is a mutually beneficial relationship and should be treated as such. Typical peers often learn and grow through such friendships in huge ways.
“Be kind to one another, tender-hearted, forgiving each other, just as God in Christ also has forgiven you” (Ephesians 4:32). Helping your child lovingly interact with others is a natural part of Christian parenting. In his explanation to the 8th commandment Luther says that we are to “take [our neighbor’s] words and actions in the kindest possible way.” If each of us strives to approach situations with this attitude, we can truly become comfortable with interactions involving all kinds of people. As you encounter children with special needs, imagine how you would feel and how you would want to be treated.
Just as your child and my Liam have many things in common, so do you and I. We are parents doing our best to nurture and love the children that the Lord has entrusted to us—probably more alike than different.
Wendy Heyn’s second child, Liam, was born with a rare genetic neurodevelopmental disorder known as MECP2 duplication syndrome.
Advice from Liam’s big sister, Sophia
Sophia Heyn is a creative 10-year-old who enjoys reading historical fiction and acting out the scenarios that she learns about from Laura Ingalls Wilder, the American Girl series, and other beloved books. Because her father was born and raised in Germany, she has traveled to Europe many times, and this gives her a different perspective on the world. Perhaps having a brother with a genetic disorder that causes severe cognitive and physical disabilities has also contributed to the mature way that she carries herself.
I sat down with Sophia over a cup of hot chocolate to hear her perspective on how other children should treat her brother.
Q: What do you like to do with Liam?
Sophia: I play Thomas [the Tank Engine] with him and help him get a drink. He likes me to set up his Thomas cards so that he can wreck them.
Q: When someone meets Liam for the first time, what kind of questions do they ask?
Sophia: Some people ask, “What’s wrong with him?”
Q: How do you answer when people ask that?
Sophia: I tell them that he has a disability and his brain doesn’t work the same way that ours does. I like when they ask questions. Some people just stare, but I think it’s better to ask questions.
Q: How does it make you feel when people stare or treat Liam differently?
Sophia: I don’t like it.
Q: What would you like to say when that happens?
Sophia: It’s okay if you have questions.
Sophia encourages people of all ages to talk with her family about Liam. Her love for her brother shines through as she talks about him, as does her sense of protection for him. Like most big sisters, Sophia wants children to be kind to her brother. As you help your children learn how to respond to those with special needs, consider sharing Sophia’s thoughts with them.