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5 Ways to Feel Less Alone as a Parent of a Disabled Child

By ELLEN SEIDMAN

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Summer means hanging on our deck until dusk; barbecues, watermelon and ice-cream galore; roaming around fairs with the kids…and that alone feeling I get when I’m at our town’s pool. As all the other parents are chilling and chatting while their kids splash around, my husband or I are helping our older son navigate the water. Max has cerebral palsy and while he walks well, he can’t swim and sometimes loses his balance in the pool. I love seeing him have a good time and yet, I feel left out as a parent.

I especially felt this way when Max was a tot. As my friends’ children were acing their developmental milestones, babbling and toddling around, Max’s therapists and I were working on getting him to make sounds and pull to stand. I had to drop out of my neighborhood playgroup because it hurt too much to see the other kids doing their so-called typical kid things, which further isolated me from other moms.

As the years passed, though, I discovered ways to help me feel less alone as a parent of a child with disabilities. I asked a few friends to share their tactics, one of which I’m trying this year at our pool. Here you go; I really hope they help you.

1. Find your parent posse. 

This may sound obvious, but caught up in all the to-dos we sometimes neglect to reach out to other parents of children with disabilities. That’s key, however, to not feeling alone. I’ve found community through my blog, Love That Max; hearing from other parents who are living parallel lives is so reassuring. “My special needs mommy friends may be walking their own paths with their children’s diagnoses, but we are walking it together and that keeps me sane,” says Debbie. “We talk about everything from concerns and frustrations to self care.” Whether you tap into a Facebook group, message or text with other moms, or meet up in person for the occasional mom’s night out, do it.

2. Dump the development books.

Toss that What To Expect book for your baby or toddler. Unsubscribe from the baby site emails about milestones. The more you obsess about what’s “normal,” and what your child isn’t yet doing, the more anxious you’ll be—and the more you’ll keep wondering “Why did this happen to me?” Our children proceed on their own timelines, and nobody else’s.

3. Make child and parent playdates.

My friend Peggy is rarely at home on weekends with her son, who has autism and Down syndrome—they’re always doing activities with other parents and children with disabilities. “I have a large social network to do recreational activities with, and I’ve made tons of friends through a local autism group,” she says. “No one even blinks about anything behavioral because everyone understands each other.” Hearing this was a good reminder to make pool playdate plans with other special needs parents this summer.

4. Get involved in school.

Because children and teens with disabilities are sometimes not in their local school system, in can be difficult to get to know neighborhood parents. Volunteer for your child’s book fair or annual dance so you can meet up with parents who live near you.

5. Go on date nights.

Your child with disabilities, your other kids, your job, your home: quality time with our partners sometimes comes last on our to-do lists. (Sitting on the couch together at night bingeing on Netflix doesn’t really count.) But there’s no better way of feeling less alone. Ever since Max was little, my husband and I have gone out several weekend nights a month. Sometimes, all we do is go to a coffee bar, read, and talk—and we make an effort not to discuss our three children. Reconnecting with him reminds me that we are in this parenthood thing together.

ELLEN SEIDMAN

Ellen Seidman writes Love That Max, an award-winning blog for parents of kids with special needs who kick butt. Its namesake: Max, a teen with cerebral palsy who…kicks butt. A mom of three, Ellen’s also a web content consultant, magazine editor and writer, and professional snacker. Find her on Twitter, Facebook and her website.

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