Tips for Dad: A New Journey When Your Child Is Disabled

By Sharon Perkins, Stefan Korn, Scott Lancaster, Eric Mooij

You’ve had confirmation that your child is disabled. This can bring out all sorts of frustrations and disappointments for dads and moms alike, and you may keep these emotions pretty tightly under wraps for the moment. That’s fine, but it may also feel good to let it all out with someone who has been in a similar situation.

Imagining the hard road ahead of you can be devastating, and you may even blame yourself for whatever the problem is. But another way to look at your child’s disability is as a way to motivate yourself to help your child develop to her full potential.

Adjusting your expectations

When you first find out you’re going to be a father, thinking of your child as a way to fix all the things that went wrong in your own life, or wanting your child to have more opportunities or career options than you did, is tempting. Perhaps you imagined your child becoming an astronaut, a concert pianist, or anything that she may dream of being.

So it takes a bit of getting used to the idea that your blind child will never see the world, your face, or his own children (unless there are amazing leaps forward in technology). But then again, would Stevie Wonder have become the amazing artist he is if he weren’t blind? You never know what’s in store for your offspring, which is really no different from the experience all other parents have.

Going into fatherhood, parents also expect that their children will grow up and one day leave home. It may not be possible for children with a severe intellectual disability who need one-on-one care 24 hours a day to live an independent life. This can take quite a while to sink in, so cut yourself some slack and allow emotions and frustration to come and go.

But there are incredible things to be said for accomplishing things that are relevant to your child’s world. The triumph of an autistic child — who, with time, patience, and the right support, is able to communicate her needs and ideas to a range of people — feels like a huge achievement, on par with any other milestone parents see their children accomplish.

And who’s to say that your child won’t be able to do what most experts think he can’t do? You may find that your little one completely shatters your ideas of what it means to have a disability and achieves much more than you ever imagined.

Disabled in one way — very able in others

Disabled is a misleading term. For one thing, it defines a person by what he’s not able to do.

What do you most remember about Beethoven, Louis Braille, or Stephen Hawking? They’ve all achieved incredible things, far beyond what many able-bodied folk have done!

  • The great composer Beethoven gradually went deaf, but was still able to create incredible music without any sense of hearing.
  • Louis Braille was blinded by an accident as a young child and went on to create a way for the blind to read with their fingers.
  • Stephen Hawking has a form of motor neuron disease called amyotrophic lateral sclerosis and was given only a few years to live when his condition was diagnosed in his early twenties (he’s now in his seventies). Hawking is wheelchair bound and needs a computer to communicate. Despite these limitations, he has produced groundbreaking work in the field of theoretical physics. Hawking writes about his experience of disability on his website.

Other famous people who have shown disability is no barrier to success include actress Marlee Matlin, who went deaf from a childhood illness; Helen Keller, who proved being deaf, blind, and mute couldn’t stop her from getting a university degree; and Franklin Roosevelt, who became president of the United States despite the fact that his legs were paralyzed from polio.

Finding help, assistance, and resources

Knowing where to go to find assistance — both monetary and emotional — is a minefield. Start with your caseworker, your healthcare provider, and support organizations, and check out the following resources for information about funding, schooling, and your child’s rights. Local and state organizations can also point you in the right direction. Most parents of special needs kids become very savvy about getting the help their child requires: