Telling others that I have a child with special needs is never something I've really gotten good at - and it's been almost a decade now. It's a tough topic to work into a conversation, it tends to fall flat. Most of the time if someone (like a coworker) asks about my life I'll say "I'm a divorced mom of two, with a new partner and one of my kids has-special-needs." *
I don't know why I usually run the last bit together, I'm not ashamed of my child's issues or our tough but amazing journey. Most of the time it's just that I'm trying to make it easier on the listener. Most of the time it's hard for outsiders to know how to react to, understand and live with us.
"Your child doesn't LOOK special needs" is a commonly blurted reaction around my child - which is usually followed up with widened eyes and a hand quickly clamped over their mouth. You can just tell what they're thinking (my gawd did I say that?).
I almost always understand, blurting out a remark like that isn't an unusual reaction.
Sometimes it can be a thoughtless and prejudicial remark - but it's almost never intended that way. I think those who are surprised by special needs in a "normal' package ("normal" - that feels ugly to say) are coming from a place that is just devoid of information - not filled with judgments. They don't know how to react because they're on new and uncertain ground and so they react with the first thing that comes to mind - without thinking of the consequences.
Sometimes a thoughtless remark is compounded by further remarks "well it must be easier to live with THOSE needs than some poor child who's got ___ (pick your common misconception) because your child LOOKS just fine."
That's a hard one to react to with anything but a deep breath a sigh and a lot of patience.
Appearances have nothing to do with the reality, which is a reality that sometimes gets lost in the reaction.
There's no way of knowing how catastrophic a child's health issues are by appearance alone - I know children all over the SN spectrum and only a few of them have an appearance=severity correlation. That was one of the very first things we ever learned walking in to the Children's Hospital (back when I was on the "I work here" side, instead of the "I live here" side).
Don't judge a book - or a child - by their cover. Behind those perfect curls and lashes could be massive brain damage, behind the child with spasms and a twisted body is a genius IQ, that beautiful "perfect" baby is profoundly Deaf, that soccer star teen is dying of cancer.
I was just discussing the issue of SN children with a "normal" appearance with my family Doctor - she has an adult SN son. For a while her son worked in public helping customers - but he had to stop after being repeatedly hospitalized for anxiety. Customers behaved in often cruel and brutal ways to him - because he didn't "look like he had special needs" and they didn't adapt their behaviour or ramp up their compassion when dealing with him as a result. He simply could not tolerate their "normal" behaviour.
I find two things in that situation sad - that compassion is only switched on for "unfortunates" and that there is still a mistaken perception that special needs people must look like something "other" because they are "other"
We aren't other.
Why think about all this now? For a few reasons: an impending neuro MRI for my SN child and also because we've had guests recently and I've only now noticed their reactions to our family.
My SN child will be going in the the local kid's hospital on Wednesday for a neurological MRI and maybe a chat with the Neurosurgery clinic. We're regulars - aside from all the other issues as part of this syndrome there's also a catastrophic neurological problem that could cause life threatening issues with no warning.
These tests are pretty regular - and so far we've beat the odds. They're still stressful and frightening and this will be his first non-sedated test, so we're hoping to get him through it with a minimum of fear - and to beat the odds again.
The second reason I've been thinking about how our family looks to others grew out of my observations of some recent child guests in our house. They didn't do anything wrong - it's just that I saw our family through their eyes while they were visiting.
And it's different. I don't know how different, though, because to me "normal" is weird. I know we're different, but I have no idea what life is like on the other side.
My daughter's Barbie meets "the cute doctor named Ryan" while Barbie's daughter Stacie is in the ER. Both kids use inhalers at bedtime while being avidly watched by sleepover guests. I have a huge bottle of Pancrease next to my seat at the dinner table that dinner guests large and small ask about. Co-workers wonder why I get so out of breath all the time. I talk medical. One child wears a heart monitor to school for a month - which makes him a mini school celebrity (with the bonus hilarity when the monitor makes funny noises in assembly).
It's hard for outsiders to know how to react to, understand and live with us - I get that.
But I promise that if outsiders can accept that appearances have nothing to do with who we are inside - then we'll assume the same thing about them.
And we'll all come out of this better for it.
-----
* Some would say I have two kids with special needs - but our family doesn't really see Asthma/CF as an issue - it's our normal, it's just something we (the kids & I) have.
Comments