Friday, September 2, 2016

Out and About with my Clown Baby

Yesterday I posted the following status on my personal Facebook page:

Today a woman stopped me on the street to say her friend has a son in a wheelchair. And now she sees my son in a wheelchair. What causes people to be in a wheelchair??? Because she has a son so she's really worried - is HE going to be in a wheelchair too?!

There are no words...

People were shocked when they read about the ignorance I am faced with, obviously. But you know what? I wasn’t - because I’m used to it. Isn’t that a sad statement? I’m used to people’s ignorance about my child in a wheelchair (or my child with a “different” looking walk for that matter).

Don’t worry, it’s not always comments like that. But it’s always stares. Always. Always. Always.

People are always staring at us.

And in fairness I can say they’re not very often stares of pity. Usually when people are caught staring I can tell their thoughts are “What a little sweetie”, not “Oh that poor dear”. But that doesn’t take away from the fact we are getting stared at all the time. And those of you with exceptionally cute kids, don’t go thinking this is the same as the stares your blond haired blue eyed beauty is getting. I promise you it’s not like that.

Hopefully most of the time Asher and Nolan miss it and are oblivious. But I am not. I am completely aware that I always need to be “on”. I could go on and explain to you what that feels like, but when Mary Evelyn from What Do You Do Dear? has already spoken on the matter so eloquently, I’ll let her do the talking.

Please, have a read here, just what it’s like to be out and about with your clown baby. (Or in my case maybe superhero babies is more fitting!) And a word to the wise - when you think your staring at someone is subtle (we all do it, me included), it's probably not.


  1. Totally get it. I've had (numerous) people insist on trying to put hands on one of the boys to pray for them. It's like wtf? No. Back off. Or the offers for their services: "I own an oxygen chamber and it would work miracles for your kid." was one I actually got while out to eat with my crew. Came right over to our table. Sigh.

    People suck sometimes. :(

    1. Oh gosh Stacie, we haven't gotten much of people trying to "fix" my boys. That stinks :(

      I think for me it is that I realized, exactly like Mary Evelyn says, I always need to be "on". I never feel like I can look frazzled or deal with the kids in any other way than how a "perfect parent" would deal with a tantrum/attitude/whatever behavior they're doing in public, because someone (everyone) is ALWAYS WATCHING. And with that I am constantly wondering if the watching equals judging.

  2. Quote from the article:
    "You’ve seen children stumble directly into oncoming pedestrians, solid walls, and– on one occasion– a metal pole, because their eyes were fixed on your clown baby, rather than on the path before them (true story)"

    This, in my humble opinion, is where the problem starts. Right here, with the staring children. If all the children were taught young that staring is wrong, that kids may look/act different but that doesn't mean we need to stare or treat them differently and so on(you get the idea), my guess is, we wouldn't have the stupid, ignorant grown-ups asking the stupid questions and staring worse than the children.
    I am sorry and still in disbelief(I first read your post yesterday but couldn't even think of anything to say) that someone(an ADULT no less) would approach you and say such things.