Simeon adores our neighbors. They have two little kids and a basketball hoop. They have lemonade stands and picnics. They have a toy lawn mower and kid-sized leaf blower that makes a real whirring sound when you press its buttons.
And they have bikes.
Sleek. Colorful. Foot-pedaling. Bikes.
My boy wants to ride one. Like crazy.
Each time we visit, it ends the same way. He sees the bike. He begs and pleads. He points, saying “Mom! Sit bike? Sit bike?” over and over again. I remind him that he has his own bike, a hand trike, at home. I offer it. He refuses. Sometimes I give in and let him sit on the neighbor’s bike for a moment or two. I hold him at the waist as he perches unsteadily on the smooth black seat. But it’s never enough.
He doesn’t want to sit on the neighbor’s bike. He wants to ride it.
That’s when the crying starts. So we say our goodbyes and we head back home.
Sometimes, I just don’t know what to say. I don’t know how to talk about something so big with a person so small. I can’t figure out where to begin.
It’s hard knowing how and when to talk with your child about his or her disability.
We don’t avoid the subject. We talk about Spina Bifida and using a wheelchair. We discuss his medical routines and where the scar on his back came from. Still, this summer I realized there are many parts of his disability that Simeon still has questions about– many parts of being different that he doesn’t understand.
I wanted to help. I wanted to sort through the good and the hard and the muck along with him– to talk with him about his disability. To help him take pride in his story. So, because I’m a librarian and because I’ve seen how deeply children connect with stories, I decided to create a personalized book to start the conversation.
I didn’t want this to be a story book exactly. I wanted it to be a teaching tool– and a starting point.
For years I’ve used Shutterfly to make photo books for the grandparents, so it wasn’t difficult to grab a template (I used Shutterfly’s “modern white” style for an 8×8 photo book) and get to work. I began by outlining the topics I wanted to cover and the questions I wanted to address. Simeon’s speech delay means he is not yet able to articulate his own questions so I used conversations with fellow Spina Bifida moms to learn what kids with SB typically ask about. Questions like “Will I have spina bifida forever or can I grow out of it?” and “Are there any other kids like me?” were very helpful to consider as I got ready to write.
Here’s the general list of topics I decided to touch on:
- What it means to have Spina Bifida and why he cannot walk.
- Positive examples of what he can do and how he can get around using wheelchair (he goes to school and church, he plays with friends, etc.).
- Spina Bifida does not go away. It will always be part of his life.
- There is nothing wrong with bodies being different.
- How therapy, surgery, and doctor visits keep his body healthy.
- Sometimes he will like being different. Sometimes he won’t. It’s okay to feel frustrated, sad, or left out from time to time.
- Constructive things to do when dealing with upset feelings.
- Examples of other children and adults who use wheelchairs.
- Hard things are a normal part of life (all people need help sometimes).
- Examples of how he helps others. Examples of things he can do all by yourself.
I’ll be honest: putting this little book book together was emotional for me but it was so helpful at the same time. I feel like I created something my son really needed. When the book showed up on our doorstep, we sat down to read it right then and there. We’ve read it every night since, at Simeon’s request. He loves it.
He still wants to sit on the neighbor’s bike. He still gets frustrated sometimes. But when the day is done and we’re snuggled up close, he can listen to this story and know that he is capable and loved. Talking about what it means to live with a disability will be an ongoing conversation throughout his life. I’m just glad we’re starting early.
Okay, here’s what I’m REALLY excited about: Shutterfly is giving away a FREE 8×8 Custom Photo Book to one of you lovely readers! You can enter the giveaway below. A personalized book is a great way to talk with your child about his or her disability (or any tough subject, for that matter). Whether you win the giveaway or not, I highly recommend using this tool to create something special for your little one.
If you’re thinking of creating a book for your child about his or her disability, here are some things to consider before you start writing:
- Use simple language that your child will understand. Do your best to describe your childs disability in kid-friendly language. Define any terms that might be unfamiliar.
- Tell the truth and try not to sugar coat. Its important to be honest about how disability affects your childs everyday life without glossing over the facts. Ambiguous language or sugar coating can confuse young children so try to be direct and truthful.
- Keep it positive but dont forget to acknowledge the hard things. Its tempting to write only about the positive aspects of your childs disability but its important to acknowledge the difficult aspects and emotions as well. Children need their feelings acknowledged and respected– even their negative ones.
- Use photos to demonstrate. Visuals are a great way to help your child understand his or her disability. Before you begin, gather photos to demonstrate the topics you plan to touch on in your photo book.
- Let them know you love them just the way they are. Its important for our children to know that we accept and love them exactly as they are. Let them know youre proud of them. It will help them to feel proud, too.
Now get to it! Start writing and enter the giveaway below for a chance to win!
When did you start talking with your child about his or her disability? Was it difficult for you? If your child doesn’t have a disability, how do you address tough subjects (divorce, death, etc) with him or her? Parenting is HARD you guys…