Raising Kids With Special Needs: It Gets Lonely, You Know?

“I have lost most of my friends either because either they are awkward and don’t know how to deal with my situation, or they have completely typical children who are hard for me to be around. Having a child as involved as mine is a very lonely place.”

Those are the words of a mom of a little girl with special needs, who emailed me the other day. My heart went out to her, because I knew exactly how she felt. Raising kids with special needs can make you feel very, very alone in this world. Sometimes there’s nobody in your circle of friends and family who get what you are going through. Even the most big-hearted, well-meaning friends who want to listen and help may cannnot truly understand.

Recently, when the census figures came out, I read about the number of kids with disabilities in the U.S. Out of 45,042,788 school-age children, an estimated 5 percent have a disability. That a whole lot of kids—we’re talking 8,454,357. But it means that for every 20 kids, only 1 is disabled. If you are a parent of a kid with special needs, that 1 in 20 stat isn’t very comforting.

For me, it was the hardest when my son, who’s now 8, was very young. When we first learned he was going to have special needs (he had a stroke at birth), we went through the why him thing. He was at risk for cerebral palsy, not walking, not talking, and a series of other problems. Nobody else we knew had a baby who had suffered anything like that. I was in such pain I could barely speak with friends during those first few weeks after he was born. They felt for us, but they just couldn’t understand. My family kept saying, “He’ll be OK. He’ll be OK.” But their promises felt empty; I knew Max was going to have special needs, thought to what extent, nobody could say for sure.

As Max got older, the loneliness continued to flare up, often and intensely. At birthday parties, I’d watch the other two-year-olds zoom around as I sat there on the floor with Max, helping him crawl, and I felt so alone in a roomful of parents. As other mothers in my neighborhood mommy group sat around talking about their kids’ first words and other milestones, I had very little to say about Max except “He’s coming along!” I felt so alone in a group of friends. On occasion, I even felt distanced from my husband. He was overly optimistic and in more denial than I was about the challenges Max faced. There were times when I felt so alone in my marriage.

Max has made amazing progress, and the parenting gap between me and my friends no longer feels like the Grand Canyon. It’s helped that as he’s grown, I’ve been able to see more of what’s alike than different between Max and other kids. I’ve also found community: through his school, through Team Max (aka his network of therapists), through other parents I’ve connected with in my area and online. Especially online; the parents I’ve met through blogging get it like nobody else. Whether I’m agonizing over whether or not to let a group of Cub Scouts know that my son has special needs before bringing him to a first meeting, explaining why I don’t view my son as a tragedy, or confessing that I polished off the Cheez Doodles the speech therapists uses for my son’s therapy, I know I will find comfort, affirmation,resources, laughs, hope and inspiration in this space—and feel great about giving back what I get.

At times, the loneliness still strikes. But then, I go online and talk to people. I reach out to one of Max’s therapists and ask to hear about the good things he’s been up to lately. Or I’ll grab Max and hug him tight. When he smiles at me, I know that even when it feels like just the two of us, we’re doing OK for ourselves.

From my other blog:

Raising kids with special needs: The girl next door


Image: mother and child on beach via Shutterstock

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Back To To The Max
  1. by Heather

    On December 1, 2011 at 12:52 pm

    You are so amazing, Ellen!

  2. by Queenie

    On December 3, 2011 at 12:49 am

    Thanks for sharing. I totally hear you. I have two special needs children and I started talking about my kids in my blog so that others family out there can learn about me, my kids and just how proud i am of them!

  3. [...] loneliness that is a reality for so many special needs parents.   Many special needs blogs and bloggers have shared that this is one of those secrets that special needs parents don’t always share. [...]