How to Talk With Your Child About Their Disability

By: Susan Diver, MSW, LSW

I have been working with families and children with disabilities for more years than I care to admit.  It is a great job that I love very much.  The best days are when you feel like you have made just the smallest difference in the life of a child, a sibling or a parent.  I talk to parents every day about a large variety of topics dealing with their children; potty training, behavior, siblings, school, anxiety, bullying, respite, the list goes on and on.  If I was to address every topic that caused a family to be stressed, this blog would turn into a very long research project.  For today, I am going to talk about a topic that parent of children with a disability often ask me, “how do I talk to my child about their disability?”

You know your child the best; you understand their many moods and your strong personality will get you through a difficult but necessary conversation.  So put on your gym shoes and jump right in and get started.

Here are a few suggestions to remember when you have that conversation with your child about their disability:

• Think about your child’s cognitive level, start there.
• Be comfortable in what you are saying, rehearse, practice, talk it thru several times before talking to your child.
• Be honest!  My Grandmother told me, if you always tell the truth, you’ll never have to remember the story you told and tell it again, stick with the truth, it’s safe, easy and there is nothing to remember. 
• Be Consistent…….once you have decided on what to say, how to say it, always use the same story, wordage to talk to your child.
• Be strong!  You cannot be sad, cry or talk about how bad you feel.  You are simply telling your child what is their disability.  The stronger you are, the stronger they are!  The more positive you are about who your child is, the more positive they will see themselves.
• Check your guilt at the door!  You cannot use this as a time to relieve your guilt about your child’s disability, this is a time that it’s not about you, it is about your child!
• Pick teachable moments; when your child brings up the topic, when a question is ask, when he’s in the back seat of the car, when something has happened at school or a party.  But make it when your child is calm, not upset or crying.  This is not a good time, when your child is upset, just like you; they won’t hear you or what you are saying.
• Follow your child’s lead-Long before they ask you about being different, they will know they are different!  Use questions to see what they know, what they have overheard, what they understand.
• Try to talk when your child is alone.  You will know their cognitive level, what they understand, how best to talk to them, a sibling or other family member may have a higher or lower level of understanding and they will ask too many questions that will interfere with your talk.
• Be ready…the time will come that your child will ask, “why am I different,”  “why can’t I run like Billy?”  It’s coming, so the sooner you are ready, the better prepared you will be!

Siblings will want to know too! Use the same skills we’ve just talked about, use the same “story” you have used with your child.

For more information about Easter Seals DuPage & Fox Valley please visit EasterSealsDFVR.org.