Wednesday, August 03, 2011

Should I say something? Or just walk on by?

Before I had children I was always particularly intrigued by children with special needs and their parents.  My senior year of high school I babysat for a family a 2 year old with cerebral palsy.  I learned so much during that year and lost a little bit of my insecurity in approaching people who had children with special needs.  I always wondered, though, whether they would think me rude, or if they would take my kind words toward them and their child as an opportunity for friendship.

I found out later on for myself. 

Almost six years ago I gave birth to the most perfect little baby girl that was so sweet and the tiniest baby I’d ever held.  She looked a lot like her older brother and was such an easygoing newborn.  When she was 8 weeks old she was diagnosed with Down syndrome, a genetic condition when the body has 3 of the 21st chromosome instead of 2.

Looking back at myself “pre-disability-club-membership,” I can answer the question that I always wondered then.  I can say with ease that if you have a kind word to say to the parent of a disabled child… that without a doubt, share that with them!  Some parents have very little outside support and encouragement, while others are well connected.  As with any parent, there are a lot of needs that a young child has.  Parents of children with disabilities face those same challenges, and sometimes health difficulties or delays in development as well. 

So, what should you say to the parent of a child with disabilities, and what might you want to keep to yourself?  Here’s a little help in that area.  Most of all, remember that the parent of a special needs child is JUST LIKE any other parent… and their child is just like any other kid!  After all, we are all created in God’s perfect image.  A child with disabilities is a child first, and they want the same basic things that any child does.  The parents?  They do too.  Acceptance and Friendship are two of those things!

What to say:
Encouraging words about the child
She is beautiful.  He’s so well behaved.  Look at that great smile she has!

Encouraging words to mom
You handle yourself so well.  I bet you’re a great mom. 

General conversation not aimed at the mother or child, but just the person
Wow, it’s hot out today.  Have you been to the new theater in town?

Questions not pertaining to the child’s disability
How old is your son?  Did you have light blonde hair like hers as a child?  What a cute shirt, where did you find that for him?

What not to say:
Don’t speak as though the disability is bad
I’m so sorry he was born that way.  I’m sure it’s hard dealing with her all the time.

Don’t put the parent on a high pedestal
You must be someone very special. I could never do what you do.

Don’t point out the difficult things that they may be dealing with
Wow, he has a lot of troubles, doesn’t he?.  Does she always scream as you walk through the mall?

Don’t ask intrusive questions, or things lined with aiming guilt.
What’s wrong with your son?  Was it something you did that makes her that way? Will she outgrow all those problems?

One of the biggest things to consider when talking to the parents of a special needs child is this: It often means the world to them to have someone approach them and make kind conversation.  Someone willing to embrace them and their child in a positive way is often just the pick-me-up they may need.

A last note, is that some parents are very open about discussing their child's disability.  Some parents would really rather not.  Allowing the parent to make the first move in addressing the special needs of their child is usually a safe way to chat with someone that you don't know personally.  

**I often get a topic in my head and brew on it for a while.  Sometimes it makes it out to a Word document, often to be stuffed away in a folder and never looked at again.  Today, I took a second look at that folder and decided that a few of those articles I have hidden away because they're not how I usually blog... well, they're about to make an appearance.  So, the first of my "articles" about special needs parenting.  There are a few of them already written that I will post at random, and each is intended to be read by a diverse population of special needs parents AND those who may read about "us" but aren't quite "in our world"... yet :). 


  1. ohhhh the "pedestal" comments. People say that to me all the time. "you work with kids with special needs, you must be such a wonderful person." and I say "um, do you know how awesome these kids are? I love them!"

    Seriously though. I love this list. It's a really good template. My sister and I have what we call "radar" whenever we see kids or adults with special needs and we just look at each other and grin. We ran into one of our campers at cosi once and we actually lept out of the car to say hi.

  2. thanks for this post. it is packed with great, useful info.

  3. This was a great post. I always get the "I could never do what you do" comment. It's always driven me crazy. My daughter will be 22 years old this month so it's been a long time. She also has an extra chromosome...Trisomy 9p.

    Anyway, I just wanted to let you know that I really enjoyed what you wrote. Everything you wrote are all the things I've felt.

  4. Great post! Would you considering writing a post about talking to typical kids about kids with special needs? A facebook friend of mine posted the other day, asking how to handle that situation. I'd love to hear your perspective on that.

  5. Great post! I think it is helpful for people to find something like this to refer to, so many times when their friend or relative has a child with a disability, they have no idea what to say, so they stay away instead.

    Finding a blog post that talks about some do and don'ts would make that easier. We get every comment under the sun, the "I could never do what you do" comment bugs me the most.

    Parenting is a challenge no matter what your child has going on. I think all parents should be more supportive and understanding of one another.

  6. great post!!
    I cannot tell you how often we hear "WHAT is wrong with her?" or "What did you do to her?"
    And this is from adults!! Kids are so much more accepting, if they ask it is just being curious.
    It really bothers me when people openly stare at us, so hurtful. I am so happy that the kids don't seem to notice, yet :(

  7. Super post and great comments. Can I repost?

  8. THANK YOU! Can I share this too? It's definitely something I've wondered about and as we'll be initiated into the special needs family soon, I think my friends and family would be glad for your tutorial too. :-D

  9. Yes, absolutely feel free to repost. Thanks for the positive feedback :)

  10. wow! how do you do it? ummm I just get up and do it! it isnt like there is another option! my favorite thing to say about a screaming child is "wow! someone is not happy!" or if they are happy "wow! he is a happy little guy!" I dont wanna be on a pedestal either. It makes me uncomfortable. I wanted to be a mom, I am a mom, and all that goes with it. it doesnt make me any more "special" than any other mom. Mostly I like when people just ignore us and go about their business as if we were not any different than any other family. although it would be nice if they got out of the way of the wheelchair lol

  11. Thank you for this post! I am really looking forward to the other posts in your folder. This one hit home and as I was reading the lists I realized how true it is of the right things to say. When people say something so postive about my son my defenses go down, when something is said on the not to do list I immediately feel that motherly defense arise. Thank you for articulating this so well.

  12. Thank you, HELPFUL post!! Is it okay to directly say to the child, I like you shirt! You have pretty eyes?

  13. Great post. I hate the "pedestal" comments too - I never know how to respond. One person actually called me an angel - obviously, they didn't know me very well! ;) When people tell me I am so "special" or "wonderful" for adopting Charlie, I just tell them they should do it too!

  14. Thank you so much!! I look forward to your next folder writings! Thank you for allowing permission to repost.

    I also recoil at the pedestal comments. I'm no better than any other mom. I'm just a mom with my boys, trying to do my best. I also like the general conversation, not having to talk 'abilities' all the time. When I hear 'Can he do x yet?' my defenses go up, way up. The polite guess is always way high or low, never at the level they're at.

  15. great post, i love how you posted the "do say", "dont say" section, my husband and I have a daughter who broke her back and is paralyzed, we constantly get asked how she is doing and when we say "shes doing great" they automatically say " oh, shes walking again?" it drives us crazy and takes some much patience.
    love your blog!

  16. Pedestals make me uncomfortable, there's only one way to go...down, which is usually where you'll find me. ;o) Great post. I always try to make an effort to speak to a parent who has a child with a disability, AND the child, whether they can respond to me or not.

    I love when someone speaks to my kids, and I'll talk to anybody, lol, just ask my poor quiet hubby. :oD

    June (who can't sign into google for some reason)

  17. Really good post! We've only had Alina and Vitaly for about three weeks now, we've gotten more negative looks than positive comments. Especially in EE, there were people who gave Tom and I dirty looks. Ugh! We were always on the "ready" when we went for a walk. If we saw someone staring at the kids, we would try and catch their eye and say "Good day" with a smile. Usually we just got a dirty look back or they ignored us. But there was an occasional person who smiled or said something positive. Since being back in America, when we see people staring we catch their eye and say "Aren't they cute?" The guard does fall when someone has a nice word about the kids. :)

  18. ha! some family visited today. aunt asked about are they gonna do anything for her hands? I said no not right now because she is so high functioning with them. she was puzzled by that. but really the kid does what she needs to, even if her hands are in the wrong position. She is very determined! Maybe she will never get her hands changed but she is still a ray of sunshine who strives to do as much for herself as possible. some people just dont get it.

  19. I think this is great and will be borrowing to share as well :) I always feel so uncomfortable when people go on and on about how great we are. We aren't amazing people, but we are amazingly blessed! I wish the whole World knew how lucky we are that we get to be parents to this most awesome little treasure.

  20. My absolute least favorite question that I get ALL the time is "do you know how severe her Down Syndrome is" Grrrr, not many things rub me the wrong way, but that does. Makes me want to say something like "your child is really obnoxious, do you know how severe it is? Will he be able to function when he gets older being that he is so obnoxious?" My answer to these people is usually, "Doesn't matter to us"