the otherness

My essay called The Invisible Mom is making the rounds again on social media.  I wrote it almost a year ago, and wince when I read it because it is raw, angry, vulnerable and all still true.

Keith McArthur tweeted this today:

Screen Shot 2014-05-15 at 8.07.10 AM

 

 

 

He’s right about the otherness.   Basically, The Invisible Mom was a plea from the other to belong, to join that circle of Lululemon moms standing in the foyer.  (Hell, I own Lululemons too).  All I want for my son is for him to belong, to have kids play with him at recess, to be invited to birthday parties.  Yes, he needs a bit of extra understanding because of his differences.  But he’s an 11 year old boy first.  Please don’t be afraid of him.

Mary Evelyn Smith wrote a brilliant post about ‘Special Needs Moms.’  She hits the Myth of the Special Needs Mom point home perfectly, with humour and grace:

“…it tells the world that only a special kind of person can raise a son or daughter who is different. Dangerous because it increases our loneliness when we remove ourselves from the world of everyday motherhood—a world we still live in, even if it sometimes seems far away.”

I’m a big advocate for peer support in the disability community.  Families need to connect with other families in similar situations – it offers us hope and acceptance, especially in the early days of diagnosis.  The Bloom blog from Holland Bloorview is an excellent example of a smart, safe forum for topics related to disabilities.  We so need that – the world can be a cruel place for those who are different (just read the comments on my essay, There’s no such thing as a perfect child.  Wait, I take that back.  DO NOT READ THE COMMENTS).

We have to balance our absolutely essential special needs groups with being visible in our communities and in mainstream media.  We must share our stories more often to the general public, like Hamilton Cain did in his recent essay “The Family Guy” in the June issue of Oprah Magazine.  His is not a special needs dad story.  His is simply a human story.

Who hasn’t had something unexpected happen in their lives?  Been divorced?   Had someone close to you die?  Lost a job?  Had a child with a disability?

Life is beautiful and messy and painful and sweet for all of us.   I am not the other.  I’m not that special, to be honest.  I’m a mom to a punk rock musician, a lovely teenage daughter, and a boy who happens to have Down syndrome.  I am a mom like you.

One thought on “the otherness

  1. Christina Herbers says:

    Love it sue! So true! Even though I think that I may fit a bit more of myself with other special needs moms and dads – what I really crave is connections with every parent. Why can’t we all just be parents together? We have so much in common with others. Please try to see our similarities, not our differences! I am not an other! I want to be included in society! Jaina wants to be included in society! I actually can’t remember the last time she was invited to a birthday party for other 8 year olds. ~Thank you for your honesty.

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