Clearly Some Don’t Get The Awareness Thing…And Never Will

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It had been a very good week off; a time to recharge, spend time together as a family and appreciate what that means: being together, re-connecting, and appreciate that times can change quickly and drastically.  The new pup has changed our sleep/wake patterns and we’re still getting used to that.  In a matter of months, Nick will be in college; hopefully he’ll have some kind of part-time job before then (LOL!), so our day-to-day family dynamic will definitely change.  Birthdays, concerts and baseball games are coming now that Spring has finally arrived.

I guess I tend to take for granted the support each of us has provided to each other; understanding what it’s like to be part of a family affected by Autism is one thing; it is quite another to walk in our shoes.  Just simple acts of empathy, and understanding the stress levels that Autism tends to put families under are tremendously helpful.  Actually learning about Autism (and other related developmental disabilities) and offering help when it seems to be needed are true gifts; to that end I am extremely proud of my older sons, who so often ‘step up’ for their little brother, and each other.  Imagine someone offering you a brief respite, a moment to sit and have a quick, undisturbed cup of coffee or offering to watch your special needs child for a few minutes is like manna from heaven.

Our vacation, as usual, came to an abrupt and jarring end after an Easter get-together.  The setting is a family gathering in the home of a young child who is (at least) developmentally delayed and likely a nonverbal autistic.  He is a whirlwind of activity and impulsivity.  My kids played with his siblings and other cousins, allowing his parents to tag-team without the distraction of worrying about their other kids.  While he does have quiet moments (he let me stroke his hair while he lay next to me on the sofa), these are usually short-lived, especially when it’s late in the day and he’s tired.  Then he jets off to another room, or activity, or just needs to get up and keep moving.

I was appalled to hear a relative say, “I know this sounds mean but can’t we strap him down to a chair?”  Let’s be clear here: this is not the first visit she’s had to her nephew’s home.  He wasn’t particularly agitated, certainly not violent.  Actually quite redirectable.  So after cocking my head askew and imperceptibly shaking my head, I (and others in the room) answered 1. how inappropriate that is, and 2. how futile it would be, reiterating how this boy had earned his nickname ‘Houdini’.

Then comes,  “couldn’t they put him in a room with nothing in it?” I bit my lip before answering, “this is his home, this is where he should feel at home.” 

I did not bother to go into awareness issues.  I did not bother to explain just how wrong those two questions were, on so many levels.  Autism and developmental disabilities have been part of our extended family landscape for over a decade.  Everyone was witness to how difficult family gatherings in homes and restaurants, were.  How much of a toll in terms of stress and anger and lack of support there was after we found out our son Mike was autistic.   After learning that our nephew was also developmentally delayed, I remember my sister-in-law telling my wife ‘now I know what you were going through’ (or something similarly empathetic).   Vindication? No.  Understanding, yes.

I can’t pummel people about the head repeatedly to change how they view Autism, and its alarming rise in the United States.  I can’t change people who don’t want to change.  I can’t change how people interact with their own family members.  I can’t make people advocate for a cause they don’t want to understand.  I don’t wish they knew what it would be like to raise a Autistic child, because that would be one more child who needs to be championed.  I can’t ever describe how it feels to see how my Autistic child makes small progressions, and how that has helped me appreciate his two older brothers that much more for their successes.  I can’t teach them how to be ‘other-centric’.

I can feel sorry for them, for they lack basic human kindness.  They can’t help it; they were born that way.



One thought on “Clearly Some Don’t Get The Awareness Thing…And Never Will

    wisdomfromthesisterhood said:
    04-01-2013 at 1:10 pm

    Very wonderfully well said !!!

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