The Seven Year Itch

Before Claudia started school I started freaking out a little bit.

She went to Kindy in Ngongotaha, Rotorua – then after we moved to Geraldine went to the Geraldine Kindy.

In Rotorua she had the support of Tracey, in Geraldine it was Mary.

We couldn’t have had better people.

It all went swimmingly with warm and welcoming staff , families who smiled at us and children who took her dragging her walking frame around behind her in their stride.

Claudia played happily alongside others and thrived with the excitement and action all around.

It all felt sweet and safe and as her fifth birthday and school loomed I began to get anxious.

It was then I was told one of the things which has certainly proved true.

A wise and wonderful woman with many years in the disability sector told me it was the seven year times I’d need to prepare myself for. And she was so right.

School was not so traumatic (well actually, it was, but only because the first school we went to had it’s own massive issues and attitudes which made the whole sorry thing toxic – but that’s a whole other story!)

No, in terms of Claudia fitting in or managing the day the transition was not the problem.

It was the “normal” growing up going on around her.

Until she was seven her disabilities had been largely camouflaged by her peers.

They played beside her, swarming around in a jumble of enthusiastic indifference to difference.

But by seven some of them were reading well beyond the “star word” recognition she could manage. The playground games had become complex , friendships complicated and there was a chasm where all the differences between her and everyone else were massive and obvious.

The same thing happened at 14. High school starts in Year 7 in a country district, so despite our fears about the new “big” location, the transition to High School went well because she transitioned with everyone from Primary School.

In addition she started with the support of one of her Teacher Aids from Primary School.

(This was a coup , happened on a bit of a technicality with the support of our Primary School and was the very best thing that could have happened. The problem of transition was never going to be Claudia, as far as we were concerned – it was going to be High School staff not knowing her and not understanding what she was saying. We knew she’d be fine as along as she was with people she knew and who knew her. But again, transitioning is another whole story)

But 14, puberty and the distractions that go with that was another time when the gap between Claudia and her peers became painfully apparent. It’s hard to see your child so very different again from everyone else and the massive change adolescence brings.

The times in between are largely routine, but those seven year ages really are the hardest.

In between the little core of girls with caring parents have made a point of continuing to be interested in and kind to Claudia. Every year for her birthday we would invite all the girls in her class to a party and in return she would be invited to the odd party.

The physical separation from those other girls that occurred at High School (because High School had a Learning Support Unit) was a loss we all felt.

The next one is 21 ; the very age she’s required to leave school in New Zealand and will be moved into her adult life – whatever that will look like.

The seven year thing turned out to be totally right.

I’m glad I was warned.

So I’ll pass it on ; be aware of those ages ~ 7,14,21.

As parents we’ll possibly mourn all over again as our children are left in the wake of ordinary kids storming ahead with their exciting lives. The gap can feel so wide at those times. But as my Dad used to say ‘this too shall pass”

And it does.

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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