seventeen years

A friend and colleague contacted me recently via e mail – the subject line was “your perils of wisdom”.  I thought she was being ironic and funny, but it turns out her spell checker somehow got involved. I thought it was an appropriate mistake.

As her request came hot on the heels of two different-but-same requests – a “can I pick your brains?” and a “I need some feedback on this” I had cause to reflect on how after 17 years raising a child with special needs I may, in fact, have valid, useful and sometimes perilous things to say.

So I’ve started this blog. Not to represent anyone other than myself and our family. But to share what it’s like for us. How it feels down here at the coalface. What I was warned about, what proved to be true, what didn’t. Some tips and tricks I’ve picked up over the years. The good, the bad, certainly the ugly.

I hope I won’t be too ranty. But I might. Because we families sometimes have to be a bit rantier than other people in order to he heard. Understood.

One of the first things said to us after our daughter was born and her disabilities revealed was – “You’re going to have to grow some balls. You’ll have to fight for her”

I didn’t like hearing that (I didn’t like hearing any of it!)

But of course it turned out to be right and we’ve written plenty of letters of complaint and concern. We’ve also written many letters of gratitude and congratulations. Because when you’ve got a child with special needs – and people don’t complain at you or make a fuss – then it can seem as if they’re doing you a massive favor. By just treating your kid “normally”

Now there’s a word. Do we use the word “normal”? I try not to – I prefer to say “ordinary” when talking about other people’s kids.

Describing my neuro-typical son as “ordinary” gets a round of “awwwww! he’s not ordinary!” Without fail. Words have connotations and it seems it’s not ok to describe normal kids as ordinary.

But it is apparently ok to describe normal kids as “retards”.

Usually if it’s among their own peer group and it’s in response to a crap photograph  ;  “OMG I look like a total retard!”

This is potentially awkward in real life conversation – but easily glossed over on social platforms like Facebook.

A well known columnist recently wrote “ generally, it’s 6 and 7-year-old boys who engage in hair pulling because they are too socially retarded to understand how to initiate a friendship with a young girl, although pulling ponytails is not strictly defined by gender.’

In response to some criticism she countered that she thought it was a shame the term had been hijacked as an insult and that she’d used it correctly.

I had read her column – cringed to myself – and ignored it (pick your fights!)

But she was inundated with support for her use of the word.

People who responded usually complained objections were “PC gone mad!”  (please PLEASE can we just obliterate that hackneyed phrase ?)

It was more offensive to more people that people were offended in the first place.

But it was written as an insult.

Whatever the nuances of how the word has changed, it’s never a compliment.

And actually she wasn’t using it correctly. Her point was that 6 and 7 year old boys typically lack the social skills to communicate with girls without resorting to hair tugging. Pony tail pulling in people older than that would indicate some lack of social development or insight.

But anyway – would she – or anyone – say it to my face while chatting over a coffee? Would you describe someone socially inept as “socially retarded” to the parents of a child with Down Syndrome? Would you describe someone socially incompetent as “socially retarded” to someone with cerebral palsy?

I can tell you from experience that when it does slip out – there’s a fairly swift realization- an embarrassed moment – which I always ignore (pick your fights!) But the body language, if not the actual words, show they know it’s not a fair thing to say. 

Look at me getting all ranty in my very first blog! Oops.

Didn’t mean to.

Next time I’ll reflect on friendships for Claudia over the past 17 years, the 7 year itch (2 down, 1 to go) and  the role of social media


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