10 things special needs parents wish you knew

As a mom to two little girls who have 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’s or father’s life. So it can be painful when support falls flat, or if it doesn’t show up at all.

Here are 10 special needs of special needs parents:

1 We need you to bring it up. Ask us our stories. Ask questions. We prefer that you ask about our kids directly, rather than avoiding the topic. A smile or friendly “Hello!” is an easy icebreaker.

2 We need our kids to have friends. If your child wants to have a play date with my kid, encourage it. Call me and say, “How can we make this work?”

3 We need you to share your concerns. If you are concerned about something regarding my child, tell me about it. I may not have an answer, but I will appreciate the conversation. Just know we don’t always need your advice. 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.

4 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.

5 We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child, talk to your kids about it beforehand. Talk about behaviors and ways your child can play with my child. Need ideas? Ask!

6 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 yet. But that doesn’t mean I won’t ever want to talk about it. Follow my lead. I’ll let you know.

7 We need your tangible help. Offer to bring over a meal or help at a doctor’s visit. Or hang out with my child with special needs so I can take my other kids to a matinee.

8 We need you to treat us like your other friends. 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.

9 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.” When I open up about a struggle, I want validation, not to be blown off.

10 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!

Gillian Marchenko is a writer, speaker and advocate for her two daughters with Down syndrome. She lives in Chicago with her husband and four children.

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