When a child is born, one of the first things a doctor might announce is that the child has “10 fingers and 10 toes.” It’s a reassuring statement that new parents long to hear. But when a child is born with a disability (in my case, I was born with five fingers and 10 toes) parents are scared. What if this child won’t have a shot at a meaningful life?
They may look down the road 10, 15 or 20 years and wonder, “How can she go to the prom if she’s in a wheelchair?” “How will he be accepted by his classmates if he can’t play baseball?” These worries are natural, but the first and most important thing that parents of a child with a disability can do is to set a tone: Let your child know that it’s not necessarily that he can’t do something, it’s that he and his supporters will need to be creative, to think of different ways to accomplish the same goal. Joey might never play Little League, but adaptive sports can help him have fun, be active and develop self-confidence.
Here are three ways that parents of children with disabilities or special needs can help them thrive:
Let your child have a voice.
How much of a role to let children play in their own health care or other relevant decisions is a concern for every parent, but it’s intensified when it comes to children with disabilities. These kids often face more frequent and more difficult medical treatment. When I was 10, I was scheduled for yet another hand surgery. I ended up refusing it, because it would compromise the ability to write that I had developed. I don’t regret the decision, and as an adult, I appreciate the confidence that my mother and my doctors placed in me. Many children aren’t yet mature enough to make decisions, but some are. It’s always worth considering their input on issues that concern them so vitally.
Help your child find a mentor.
It is critical for kids to see that others like them can be successful, and to have the opportunity to talk frankly about their disability with people who can personally relate and offer advice. Contact advocacy groups, such as the Boston-based Federation for Children with Special Needs or Partners for Youth with Disabilities (PYD) in Massachusetts, for information on how to connect with a mentor for your child. PYD provides a particularly valuable service because it both matches up kids with mentors, and allows them to mentor others as they grow in confidence. It also offers “online mentoring” via Internet chat rooms to rural kids who may not live near others with a similar disability. The Medfield-based Helping Hands Foundation is a parent support group that’s also a useful resource for children with limb differences.
Don’t overprotect your child.
It’s a natural impulse for all parents to want to shield their kids from harm, especially when a parent perceives a child as especially vulnerable. But there’s a clear difference between children with friends and outside experiences, and those who are kept as shut-ins. All children are curious and adventurous. They’ll want to ride bikes and climb trees, and they’ll fall. My mother’s mantra was, “You only have one hand – don’t break it!” But it’s no favor to a child with a disability to keep him “safe” by limiting his contact with the world and opportunities to explore its boundaries.
We all want kids with disabilities to become productive, happy members of society. It’s a challenge to monitor their health while not overemphasizing their problems, and to encourage their activities without understating the challenges. Families who strike the right balance can help their children by letting them embrace their own potential.