10 Special Needs of Special-Needs Parents

As a mother to two little girls with Down syndrome, I need parents of typically developing kids to know something.

I have needs.

And yes, they may be a bit special because I have "children with special needs."

Parental support from others in this crazy business of raising kids is essential in a mother or father's life. All too often parents of kids with special needs are isolated because their experience is vastly different from others. It is painful when support falls flat, or if it doesn't show up at all.

How do you act around your friends who have children with special needs, or around the woman at school you see at pick-up, or the dad standing behind you in line at the grocery store?

Here are a few suggestions for you:

10 special needs of special-needs parents:

  • We need you to bring it up. Ask us our stories. It's OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly "Hello!" is an easy icebreaker.
  • We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, "How can we make this work?"
  • We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don't always need your advice. Feel free to talk to us about a new therapy or diet you've heard about. Just be aware that we've probably already heard of it/tried it.
  • We need you to make an effort. Effort goes a long way. Educate yourself about my child's special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
  • We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
  • We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn't mean I won't ever want to talk about it. Follow my lead. I'll let you know.
  • We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I'd love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
  • We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
  • We need validation. Don’t dismiss my concerns by saying "oh, my typical child does that," or my favorite "well, then my kid must have a disability too, because he/she does XYZ also." When I open up about a struggle, I want validation, not to be blown off.
  • We need invitations. Don’t assume I'm too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don't have kids with special needs, but I'll go if I can, and if I can't, your invitation will make my day. And ask me again!

What do you think? Agree with this list? Have something to add or omit, please do in the comments!

Check out Gillian's new book, Still Life: A Memoir of Living Fully with Depression, and visit her website, http://www.gillianmarchenko.com.