5 Things Parents of Kids with Disabilities Want You to Know
Updated: Jun 23, 2021
By Jolene Sharp
Talk to your kids about disability.
Your kids notice that my kid is different. When adults don’t talk about differences, kids form their own ideas without real information. Silence breeds shame, discomfort, and confusion. Put things out in the open. Be concrete. Talk specifically about my child and other kids with disabilities your child knows. Explain disabilities in simple language, and talk about ways my kid might be different. The core message should always be that whatever the differences, kids are kids. Every person is beautiful and unique, but we all share the same basic needs, hopes, and dreams. Talk to your kids about what is important to them (having friends, having fun, favorite toys or hobbies, praying, feeling loved). Talk about how those same things are important to every kid, and how important it is that your child be a friend and find ways to include my child.
If you don’t know, ask.
People with disabilities are as varied as any other group of people. Teach your kids: If you’re not sure what words to use or what kind of help a person might want, ask! If your kids have questions or openly stare, don’t shush or shame them. Encourage them to say hello. If your child blurts out a blunt observation, help them find an appropriate way to start the conversation. “My son was wondering about the reason you use a wheelchair. Do you have a minute to talk to him?” If it’s not the right time to strike up a conversation, tell your child you will talk about it at a later, specific time. (Be sure to follow through!) If you need some help, there are a host of books and resources online, many geared for kids. Look for storybooks that emphasize friendships between kids with and without disabilities.
If my child has challenging behaviors, it doesn’t mean they are bad.
Every kid is different, but it’s not unusual for children (and sometimes adults) with developmental disabilities to use physical aggression, avoidance strategies (like wandering off or running out of the room), loud vocalizations, or other atypical behaviors to handle things that are hard for them. The behaviors may be a way to self-soothe or regain control when things are overwhelming. The child may be struggling to communicate. For parents of kids with disabilities, this is one of the hardest things we deal with. I want my child to be a part of your kids’ world, but that gets harder if my kid hits or scratches for no obvious reason.
Here are a few ways you can help:
Acknowledge your kid’s natural response. “I know it hurts when they scratched you. That was no fun.” “I noticed you were startled by those loud noises.” Being dismissive of something that is clearly upsetting or unusual will leave your child feeling confused.
If there is an ongoing issue with my child, let me know – with kindness. Believe me: Whatever it is, we’re working on it. Communicate the facts, and offer to help: “Everyone is okay, but I thought you would want to know that [name] has been scratching some of the other kids. What can we do to help them feel more comfortable with their friends?”
Be willing to learn some strategies and teach them to your kids. For example, big reactions tend to reinforce my daughter’s aggressive behaviors. If you’re willing, I’d love to help you teach your child to respond with, “That hurts, and I don’t like it. Can you give me a high five instead?”
Remember that not all behavior that is unusual is really a problem. Loud noises or repetitive movements might be distracting at first, but if you offer a simple explanation – “Sam gets overwhelmed, and those noises help him feel calmer.” – and move on, your child will learn to take them in stride. Being an inclusive community often means learning to adapt to things that may feel uncomfortable at first. Remind your child that whatever the unusual behaviors, my child wants to be friends and may need some help in learning how to do that.
Give clear and concise directions.
Kids with developmental disabilities may miss cues about what’s expected of them. If you’re leading a church program for kids or are planning a birthday party that will include my child, think about how to provide clear steps for them to follow. Can you put up a visual schedule that shows each activity in order? Can you verbally describe what my child needs to do and what will happen next? Are you offering concrete ways for them to follow a story or understand an idea? Are there clear, simple steps to the activity you’re planning? Is there a child willing to be a peer buddy to offer help when they need it? If you’re not sure how to include my child, refer to #2 above! I’m always happy to talk about it with you, and your thoughtfulness in asking will mean the world to me.
Treat my child as a kid like yours.
Your kids take their cues from you. If you take time to interact with my child like you would with any child you care about, your kids will get the message. The best part is that as you get to know my child, her disability will naturally take its rightful place as just one piece of who she is. As your kids follow your example, they will become better, kinder people who will know as adults how to value and connect with the beautifully unique humans all around them.
Jolene Sharp is Chief Public Information Officer for the Tennessee Council on Developmental Disabilities and mom to son Corin and daughter Lina, who has Down syndrome. Jolene brings a passion for storytelling and human connection to the disability field. Her favorite free moments are spent outdoors with her family, traveling, or curled up with a good book.