September 26, 2016

Cheerful mother is teaching her male toddler to talk. She is holding him and sitting on flooring. The mom is looking at her child with love

As a society, and in our community, we often use the term “special needs” to describe people who are differently abled. The term encompasses people with a whole host of different disabilities and syndromes. It’s become an easily recognizable way to identify a certain group of people. But have you ever stopped to think of what the term really means?

To have special needs is to have an extra set of requirements that, if met, will allow you to lead a relatively healthy, safe, and fulfilling life. What unique needs does a child with spina bifida have? To fully answer this question, it’s important to try to see things from the child’s perspective. What is it like to be a child with spina bifida? Here are a few unique struggles your child with spina bifida may face and how you can help:

Struggle: Feeling Unable to Accomplish Goals

Carrie McLeod, a writer and contributor to The Mighty (who happens to have spina bifida), wrote a letter to her younger self. Early in the letter, she writes, “You only seem to notice your differences, and you see them as weaknesses.” It is a feeling that many people struggle with, especially as a young person with a disability.

How to Help: Celebrate What Makes Your Child Unique

In every aspect of his or her life, make sure that your child knows that yes, spina bifida makes them different, but different isn’t bad. Different is delightful! Show them all the people in history who were different, but who went on to change the course of civilization. History is riddled with unique people who changed the world, and it is often their differences that gave them the ability to do so.

Struggle: Fear and Frustration About Sports

While some people living with spina bifida have no limits on mobility, others may need assistance to walk or move. If your child needs assistive devices for movement, they may be nervous to try sports. The fear is understandable, since many sports aren’t designed for people with special needs in mind.

How to Help: Find a Way that Works

With a little encouragement and adjustment, your child can reap benefits from team sports. Always talk with your child’s healthcare team before starting your child in a new sport. If you’re given the go ahead, you may encourage him or her to join a Special Olympics group, or something similar, in your area. If your child is not allowed to participate in a sport he or she loves, coaching might be ideal. Being a part of a team in any way can have a huge emotional impact and boost your child’s confidence. Is your child afraid these things are impossible? Have him or her read Steve’s story.

When in doubt, talk to your child about his or her unique experience and consult with your friends, family, and healthcare professionals to come up with a solution. Remember, the first part of “special needs” is “special.”