Simeons Wheel Chair

Last Updated: Aug 23, 2018

Hello all! Today, we are touched by this custom photo book and the power of a personalized story coming from Mary Evelyn Smith via What Do You Do, Dear?. Let us be inspired by how a child’s love for stories can help them understand what disability looks like in their life. Using a custom photo book to talk with your child about disability is a great learning tool and a fantastic way to begin addressing the questions your little one will have. Storytelling is powerful!

Thank you Mary and Simeon for sharing your story, you have inspired us truly!

We were making our way through the local mall when my three-year-old stopped abruptly, his eyes wide. “Mom! LOOK!” he said, pointing towards the brightly colored kids area with a look of anticipation. I should have known he would see the busy patch of kids, climbing and sliding and playing. My son wanted to play too, and there’s no reason he shouldn’t. He loves slides and making new friends. He’s a social and active kid. But there was one problem— his wheelchair. It wouldn’t fit between the tightly packed play equipment.

My son has Spina Bifida, a birth defect of the spine, and he uses a wheelchair to get around. He’s a happy and healthy kid but as he grows older, he’s starting to notice his differences. He’s starting to have questions.

When your child has a disability, it can be difficult knowing how and when to talk with them about these differences. Whether their needs are intellectual, emotional, or physical, living with a disability affects everyday life in ways that your child may be curious about. If your child is young he or she may be starting to recognize these needs and may have questions, but how do you address such a big subject with such a little person?

In my experience, stories are a great place to start. As a children’s librarian and mother, I’ve seen time and again that not only do kids love stories, they learn through them as well. There are plenty of books for children that address disability but creating a custom photo book is a fantastic way to personalize your child’s experience and help him or her develop a clear understanding of what disability looks like in their own life.

As you begin, here are some things to keep in mind:

  • Use simple language that your child will understand. Do your best to describe your child’s disability in kid-friendly language. Use words that your child will understand and define any terms that might be familiar.
  • Tell the truth and try not to sugar coat. It’s important to be honest about how disability affects your child’s everyday life without glossing over the facts. Ambiguous language or sugar coating can confuse young children so try to be direct and truthful. For my son, this meant explaining that he will not grow out of his disability. If there are aspects of your child’s condition that are still unknown, it’s okay to say so.
  • Keep it positive but don’t forget to acknowledge the hard things. It’s tempting to write only about the positive aspects of your child’s disability but it’s important to acknowledge the difficult aspects and emotions as well. Children need their feelings acknowledged and respected. Consider including a page stating those feelings (Ex: “Sometimes, having a disability might make you feel sad/angry/frustrated/left out…”). Then provide some helpful examples on how to work through those emotions (talk about it, get a hug, go for a walk, play with a friend, etc.).
  • Use photos to demonstrate. Visuals are a great way to help your child understand their disability. Before you begin, gather photos to demonstrate the topics you will touch on in your photo book. I included pictures of my son during therapy sessions, at a doctor appointment, and using his wheelchair with friends. I also included photos of other children and adults with disabilities, to help him understand that he is not alone
  • Let them know you love them just the way they are. It’s important for your child to know that you accept and love them regardless of any limitations they may have. Let them know you’re proud of who they are. It will help them to feel proud, too.

When my son’s photo book arrived on our doorstep, we sat down and read it together right away. He absolutely loved it and, at his request, we’ve read it every night since. He’s beginning to understand his disability but, more that that, he’s now taking pride in this part of his life as well.

Telling his story made all the difference.