Jaclyn Greenberg on Parenting a Disabled Son

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Jaclyn Greenberg often feels like she’s living a divided life.

When her daughter was born, there was music and laughter in the birthing room. When her disabled son was born, there was no music. No laughter. In fact, everyone swept out of the room soon after the baby’s birth, taking him with them. Jaclyn hadn’t even had a chance to say hello.

Raising a disabled son alongside two typically-developing children (her daughter and youngest son) presents unique challenges and opportunities.

“I’ve learned, from my son, how to advocate for and speak up for my son, and it’s taught me how to do that for myself and other people in my family,” says Jaclyn, a writer who’s working on a memoir that’s tentatively titled Keeping Us Together. “There’s something about having children that makes you brave in a way you haven’t been before.”

Advocating for inclusion

Henry, Jaclyn’s disabled son, will likely never walk or talk. The world at large isn’t very accessible to those who don’t walk and talk (or see, hear, speak, sense, and act like most others), so it’s difficult for Jaclyn’s family to do things together.

“I don’t want my husband to take my son and I take the other two. I don’t want us to have to divide and conquer,”  she says. “I want us to experience life together.”

Henry’s siblings have long found ways to include him. “They will go to people’s houses on Halloween and say, ‘My brother can’t come up here because you have stairs. Could you please come downstairs?'” Jaclyn says.

Others aren’t always accommodating, and too many people don’t make an effort to include people with disabilities. Some people even instruct their young kids to “look away” when they see a person with disabilities. These parents may believe they’re teaching their children not to stare at people who look or act differently, but it’s better, Jaclyn says, to model curiosity and kindness.

“To me, the worst thing someone can say is, ‘don’t stare; look away,’ because they’re teaching a child to ignore somebody who looks different rather than to learn about them and engage with them,” she says. “It’s okay to stumble. It’s okay to say the wrong thing. Ask what’s the right thing. Ask ‘how can I include you?'”

In this episode, Janet & Jaclyn discuss:
  • Parenting typically-developing & disabled children
  • Inclusion & accessibility
  • Managing mom guilt
  • Pulling together a team of specialists
  • Advocating for your disabled child
  • Resources for parents of disabled boys
  • Asking for (& receiving) help
Links we mentioned (or should have) in this episode:

jaclyngreenbergwriter.com – Jaclyn’s website

What My Children’s Relationship Taught Me About Accessibility & InclusionScaryMommy article by Jaclyn

How an Adaptive Game Controller Helps My Family BondWired article by Jaclyn

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