Tough Conversations with Your Kids

People with disabilities are just like superheroes. We all have our origin story. It’s the tale of our lives that is used to explain or show to others who are curious or concerned about our condition. It can be difficult to explain your disability to a friend, a family member or a coworker. It is equally as hard when it’s the lady in line at Target or the deacon at church inquiring about your disability because they remember when you could walk. Unlike a car accident, a victim of violence, or someone who may have had trauma to the head or neck, addressing autoimmune diseases can be complicated. Primarily because some diseases have little to no information or cures and few people actually have it.

For example, my autoimmune disease is very rare. I am 1 of only 200,000 people in the world. That’s right: the world not just the United States. Therefore, there is not much research in looking for a cure for my autoimmune disease. How you explain the why and the how of your present status can provide relief from awkwardness in future conversations. Imagine the nuances involved in explaining your disability/disease to a child of six or seven, or even younger! Learning to effectively speak to the little tykes without leaving them with hundreds of more questions is a daunting task. You also don’t want to scare the daylights out of them. Like anything, there are proven ways to craft your skill in keeping things simple, informative and not scary.

Here are a few tips to making sure that those little guys and girls empathize and understand how everyone in this world is different but special.

Pick a good time. When is your small child most receptive to serious conversation? Right before bed? On a car ride or maybe a walk? Timing is always important.

Give information piece by piece. Not all kids will jump to the most dramatic conclusion of the “are you going to die?” conversation. Some will…. be sure to slowly feel out your kiddo. Remember, timing. Let the information out slowly and wait enthusiastically for the questions to come. The more information you can get from them, the better you can understand what they are thinking and how you can help them put the pieces together.

Explain that they bear no fault. Some children tend to blame themselves for a parent or relatives’ disease. Some younger children may think that because they were “mean” to you or disobedient at home that may have contributed to your disease.

One of the biggest mistakes an adult can make when speaking to a child on this topic is to share personal concerns with them. For example, you may feel disappointed that you can no longer participate in some athletic activities. You may have experienced bouts with sadness or depression. You should keep concerns such as these limited to another adult friend or health care provider. Ultimately you could make young ones feel helpless if you give them too much to soon. Be honest and stick to the facts but keep it high level when you are explaining your disease to smaller children.

I think what makes these topics so hard to break down is how children understand words when forming concepts. How many times have you attempted explaining something to a child and it takes you a whole ten minutes to explain? A child will deconstruct it and reform it into a very basic explanation. For me, this means that children can often be told the simple truth.

One positive in this tough conversation is the opportunity to have them see you practice resilience: overcoming setbacks, navigating negative changes and perseverance in all things. You can teach them with your words and show them with your actions that although you have a disease or disability, you are strong, happy and there for them when needed.

There are seven C’s of resilience: competence, confidence, connection, character, contribution, coping and control. The more I think about it, the more I realize that my disability has taught me these seven traits. Being able to pass these traits as well as others through communication is priceless. In the best-case scenario, when this topic will come up with the next kid (trust me, it will) you will be able to impart some things such as empathy, kindness, helpfulness, patience and fairness. That is worth the difficulty of trying the best you can to help any young person understand disease and disability. Ultimately, my set back is a setup for my comeback. This autoimmune disease doesn’t define how I live, I do!

About Merlisha Henderson: Merlisha lives in Arizona with her family. As a wife, mother and disability advocate in her community, she stays active and independent, working toward bringing equality and access to all. Click here to learn more about Merlisha.