Life is far too short…

I’ve had one of those weeks where I seem to be seeing people getting wound up by everyone and anyone.

I see comments being blown up out of all proportion on Facebook; with people who quite frankly should know better, losing their rag over tiny, relatively inconsequential things.

At the start of our special needs journeys, we’re all in the dark, we’re all learning a little bit every day.

At first we are so stunned with the news that our child has a disability of some description, that it’s hard to take in everything else. As time goes on we research and learn what are the acceptable terms for our child’s disability.

I’ve seen over the years people get jumped on (myself included) for a misspelling or typo or using a non-PC phrase. Now I know that using the correct terms are important but and it’s a bloody big BUT you don’t know the person who you’re about to jump on. You don’t know what stage they are in their journey. You don’t know what they’ve looked into. You don’t know their history. You don’t know how well educated they are or even if English is their first language.

When someone jumps on you, it’s not nice. And when they’re aggressive about it…wow…they need to take tramadol.

There was a conversation recently about how the group of people within the Down’s syndrome groups would prefer themselves to be called. For me we are a community. We look after each other. Community brings up images of caring about each other, not necessarily in a physical but metaphorical way. My community at home is my village. We don’t all know each other, but we share the same streets, the same air. We aren’t identical. We don’t all vote the same but we respect each other’s views. Or rather we should.

A similar discussion took place about how we address ourselves as parents. For me I call myself a Down’s Syndrome Advocate as I advocate for those with Down’s syndrome and their families. I am an advocate. I am actually a solicitor and I have spent many years representing clients and their positions and rights. I see myself in the same stance as Evie’s mum. I am her voice until she is able to express what she wants.

Not everyone likes these words…community and advocate. But for me they fit. There is thought that has gone into me using those terms.

I see the same fury when people use the word “normal”. Now for me there is no such thing as normal. We all have our quirks and our differences. But I don’t take umbrage at someone using the term normal to try to explain their child’s behaviour.

For example…when Evie was little we used to say “out of your mouth” ad infinitum to Evie as EVERY SINGLE OBJECT went in her mouth. She would meltdown at carnivals, shops, restaurants, would refuse to go into sea zoos, Playbarns or large crowds. We asked the professionals…she’ll grow out of it they said. It’s nothing to worry about they said.

Actually it was something to be worried about. We would describe her behaviour between ourselves as “not normal” but then we would question is it normal for people with Down’s syndrome. We were afraid to ask what is normal…what is average…are we missing something…

How terrible is that?

Only when we went out with some friends and their lovely children with DS did we see that Evie’s behaviour wasn’t “normal” and there was something else. It took us being with another family to see what the professionals wouldn’t see.

Some words are all about a matter is perspective.

Retard, mong, spesh, “you’re a bit special”, spacka, spaz, fucktard….all morally and really wrong.

We don’t all know it all. Life is far too short to get wound up about things like this between ourselves. SN parents need to look out for one another…I mean if we can’t do that for each other and understand each other what hope do we have of changing others’ viewpoints?

So learn to breathe peeps…think before you type and be kind at all times. You never know what battle someone is going through.d


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