Tuesday, September 9, 2014

Just say "Hi"

A sweet friend just sent me an article entitled 6 Things Parents of Kids with Special Needs Wish You Would Say and asked me if the article was accurate.

First of all, how much do I love her for reading the article in the first place and then asking my opinion - what a gem! I believe she was reading the article because she wants to ensure she is doing all she can to be a friendly, caring person to families like ours - and honestly if that is her intention or your intention then you are probably doing everything right already and anything I say is basically just preaching to the choir.

But since you asked dear friend, this is my response:

1. Is there something I can help you with?
Sure, this seems accurate.  It is a really nice question - it is something you might say to anyone who is struggling, not just a family with a special needs child, so I imagine that I would totally appreciate this question if I looked like I was struggling in some way with Julia. Especially when it comes to opening doors while maneuvering a wheelchair!  Chivalry of any kind is always welcome in my book! 
But more importantly what this question says to me is "I see you and I'm not scared of you." That's what I hear, that's what is truly meaningful.

2. How is he/she liking school?
As with any sort of list like this, the more specific the recommendation the less universal it will be. This is a pretty specific question and it assumes quite a bit. I don't like questions that assume.  For me this question means I now have to explain and possibly defend (to a stranger) why she isn't in school - which probably is not what I want to be doing while running errands and trying to maneuver a wheelchair through a non-handicap friendly doorway!  Just ask if you can help me! 
The spirit behind this suggestion is to ask something about the child's life rather than just about their diagnosis or "what's wrong with her?" (Yes, we have been asked this. Yes, it is very offensive.)  And so I do agree with the spirit behind this suggestion. This is a family and a child who exist in this world and have a life happening beyond replaying their child's diagnosis in their heads 24/7, so questions about life are probably more relevant to this family than questions about a diagnosis.  
I do think that specific questions, whether they be about school choices or diagnoses, are better suited in the context of a relationship than as a means of introduction.

3. Wow, you seem happy/curious, etc.
Hmmmm, I have mixed feelings about this one. I love the acknowledgement of the child, so YES to that part for sure! Please see her, please acknowledge her, please presume competency.
But leave out the WOW.
WOW, really?  
Why WOW? 
Is it a WOW if a typical child seems happy or curious? Why would my child looking happy produce a WOW response?  To me this indicates a belief that kids or adults with special needs aren't happy or curious - and that seeing this is a shocker.  
I may be overreacting to this (I have been known to overreact once or twice in my life), but this is one thing that does bug me just a little - the surprise reaction people have about us (Julia individually or us as a family) being happy.  
I don't quite get the shock some people have over us being out and about, loving and living life, rather than home crying over her diagnosis. It is so important to me that people know: She's not sad, and we aren't sad about her! 
(People overemphasize diagnoses by the way, yes she has one or two or seven or twelve, I'm not even sure how many she has - but no, we don't really think about them that much except when people ask "What's her diagnosis?").  
Anyway, I would really like it if it was not such a surprise that she is happy, that we are happy, that we like our child, that we aren't sad.  
So if you would like to comment on her seeming happy, I think "You seem like a happy girl," is much preferred to "Wow, you seem like a happy girl." 

4. Hi there!
Yes! Yes! This is indeed accurate! 
This is it, this is all you need! 
Just say hi. 
Please say hi. 
I cannot emphasize enough the power of this one tiny word to a family like ours.  
We get so many stares, so many dirty looks, so many confused faces when we are out in public (please see: Your Confused Face Is An Ugly Face). 
If even one tenth of those stares turned into a "Hi there!" our experience of the world would be dramatically different.  
It's usually me catching someone staring and saying loudly to them "HI!"  in an effort to snap them out of the staring coma they have fallen into while looking at Julia.  And I'm usually doing it passive aggressively at this point because what I really want to say is:
"STOP STARING!!!!!!!!!!!!!!"
But, if a person catches themselves (and I see this sometimes thankfully) and turns their stare into a smile - or better yet, turns their stare into a smile into a "Hi there!"  I am over the moon. 
Thank you new stranger friend, I appreciate your "Hi there!" so very much!  

5. Hi there!  
There is a reason this is on there twice. Please do this!

6. Do you need back-up?
I kind of wish the article had ended with a third "Hi there!" that is how strongly I feel about the power of "Hi there!" but I think this suggestion is also very important. 
This was suggested as a way to show support if you happened to notice someone else giving the family of the child with special needs a hard time.  And absolutely this would be welcomed by me.  It always feels good to have someone on your side when things are getting rough.  
So if we were on the receiving end of a someone giving us a hard time and a stranger noticed it and said something to me like "Do you need back up?"  I could imagine myself bursting into tears and wrapping my arms around them, holding on for dear life. And possibly later getting a tattoo of his or her name to memorialize the event - I mean seriously, this "do you need back-up" asking person would be my new hero.
It can be hard at times being out and about in a world you can't control, with people who hold negative prejudices and biases about the person you hold most dear.  I know that to survive and not get derailed on every outing I have to do a lot of blocking out, ignoring, excusing, and praying. I know it is up to me to keep it together, I know it. But oh man, to have a stranger (or a friend) see how hard I am trying and offer to be my back-up in a really tense moment - yes, I would be more than okay with that. 

Bottom line, no matter what you say or how you say it:
Kindness is always going to be welcomed. 
Kindness, even if the wording is clumsy, will be felt.
And kindness will always matter - a whole heck of a lot.


  1. This, this, a thousand times this!

  2. Honestly I wouldn't mind being asked "what's wrong with her?" Because then they'd at least be realizing my daughter is different. Instead I get asked/told "she's so sleepy" or "oh someone is ready to go home and sleep" and I have to either smile and semi-nod (what I usually do) or get into a complex explanation of a neurological disorder (dandy Walker syndrome) that they've never heard of and usually don't want to take the time to hear. My daughter wasn't born with hydrocephalus like lots of babies with dandy Walker are. So her head is small and mostly standard shaped (the back is a bit flatter than usual but her hair covers that now) and she, at this point, looks "normal" to people. When she learns to walk she likely won't anymore (and honestly I'll prefer that - I'd rather answer "what's wrong with her" as opposed to "why won't you let her out of the stroller to walk around" and "oh she must be so sleepy" when she wont wave at them or smile at them (she will sometimes smile at strangers but very very rarely and any stranger she does smile at I immediately like and usually they're the ones that really SEE her). Now when they ask "what's wrong with her?" My answer will be "nothing is wrong. She's just different". And then I'll explain her syndrome.

    1. The why won't you let her out of the stroller to walk thing and me telling people that she can't have a piece of candy because she actually wouldn't eat it anyway (she refuses anything except a bottle still) and she has food allergies that include ingredients in most candy are often met with skeptical looks. People don't believe me that she doesn't want candy and that she can't walk. You see she will often be fussing to get out of her stroller. She REALLY wants to walk but she isn't even close to doing it. She it getting close to crawling though and that IS a huge deal and we as immensely proud of it but other people (close family, close friends and her physical therapist and neurologist being exceptions) don't share that excitement if we share that achievement.