Friday, November 04, 2011

The RIGHT Things to Say to Parents of Special Needs Kids

I was volunteering over at Aliza's school the other day during lunch, and I noticed that the special needs kids all sit together at one table.  There are a lot of deaf/hard of hearing kids and they were all signing to each other.

One girl was in a wheelchair.  She sat by herself for quite awhile.  There were other special needs kids at the table, but not right next to her.

After only two months, Partners in Policymaking has already changed how I see situations like this.  That girl in the wheelchair should have been sitting at one of the tables with all the "regular" kids.  Why should she have to sit at a table almost all alone?  Why couldn't she be pushed over to one of the other tables, where she might have a fighting chance at communicating with the typical kids?  And where the typical kids could get to know her?

This is exactly why the typical public doesn't know what to do or say around people with disabilities.  Because they've been segregated.

I've been thinking lately about how people (including myself before being a special needs parent,) act around people with disabilities.  What they say and how they behave.

There have been numerous blogs, articles, and Facebook statuses about what NOT to say to parents of kids with special needs.  Those sometimes painful comments made by usually kind-hearted and well-meaning friends and family and acquaintances.  You know the ones I'm taking about:

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I don't know how you do it!  I could never do all that you do!
(As if you'd just return your own child to the hospital, if he or she had some special needs.  There are no takebacks.  None of us is doing all that we can for our kids because we are special.)

It could be worse, he/she could have ______________ .
(fill in the blank with whatever specific special need the child does not have.)

God won't give you more than you can handle.
(So God doesn't think much of your parenting skills, then huh, since he only gave you neurotypical children?  I know that is smart-alecky, and I'd never say that.  There just is no way to respond to that, because to me it feels like you're saying "buck up, you lazy bum.")

All he/she needs is a good spanking.
(No one has actually ever said this to me, but I know it's a common one.  Some people think children with behavior problems are just lacking the appropriate discipline.
You cannot punish away a disability.)
    and my personal favorite.....
You are a saint!
(Right!  That's me!)
(ok those who know me personally, you can stop laughing now.  I mean it.  Now. It's not THAT funny.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I know from personal experience that these phrases don't make most of us feel better.  I understand where you're coming from, though.  I know people are just trying to be nice and friendly and supportive.  10 years ago I'd probably have called myself a saint.

But now that I have some experience as a special needs mom, I'm going to do a little public service.  I'm going to provide a list of things that are not only Okay, but in fact are Fabulous, to say to a parent of special needs kids (or to their children).

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"How's the family?"
 (It's very simple.  Ask how things are going, and then take the time to listen to what I tell you.  Ask questions.  It's better to ask than not to ask, and risk me thinking you don't really give a crap.)


"I'd love to get the kids together for a playdate sometime."
(And then actually try to make that work.  It's not easy to fit in around our therapy schedule, but if you make the effort, I'll be so very appreciative.)

"__________ (insert child's name here) did so well today while we were together!  He/She did _________(insert examples of the things the child said or did that show progress).  And it was great to see him/her!"
(I love when you notice my kids' progress.  It shows that you pay attention to them and are aware.  I think sometimes you're afraid to notice the good things because it might amplify the bad or the "different".  Let me tell you, the bad/different is already amplified to me, 24/7, you can't make that any worse by pointing out the positives.)

"Hello, (insert child's name here).  How are you doing today?  Are you having fun?  It's so good to see you -- how about a high five?"
(Don't be scared of him.  Actually talk to the kid.  He may not respond appropriately.  He may not respond at all.  Don't that let disuade you, talk to him anyway.)
(And if he/she does respond appropriately, pounce on that with more attention and praise.)


It's pretty simple really.  Just don't ignore us.  Having children with a disability really shows you who your REAL friends are.  I'm fortunate to have some really, really good ones, as well as a close, supportive family.  In fact, this list of GOOD things to say is from real life - these are things my own friends and family have said or done at one point or another.

If you are cringing because you recall yourself saying the examples of what NOT to say..... it's okay.  Don't beat yourself up.  I understand the sentiment is more important than the words themselves, and that your hearts are in the right place.

But I also think that people don't say the right thing because they don't know what the right thing is.  People with disabilities have been isolated and segregated most of our lives.  Most of us just don't have experience in communicating and socializing with people who don't behave in ways we think are "normal."  I want to help bring us all together.

It's pretty simple.  Just

1.  ask questions,
2.  talk to us and to the kids,
3.  and point out the GOOD!


3 comments:

Joanne said...

How I love this! So true! I never get mad when people say the wrong thing, unless they are professionals that should know better! I'd add, don't be freaked out if there are some tears. I cry about my son a lot, but not because I'm sad, but I'm just really touched by his situation, all the time. Thanks for posting this, what a positive thing!

Cagey (Kelli Oliver George) said...

Love this post and am going to share it on FB right NOW.

In particular, I loved the comment about noticing progress. You are so right! My brother is autistic and my sister has an autistic son. In the end, parents just want to celebrate whatever successes their child has in life, regardless of how small those successes may be viewed by others not touched by special needs.

Thank you for taking the time to type this.

Tracey said...

A friend passed this on to me - so glad she did. This was an AWESOME post!! I get questions about my son, constantly. Reading this made me smile & I've found a new website to follow. Thanks for this. :-)

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