Ramblings of normality

I read this quote today,

‘Children with Down Syndrome are not born with any type of behaviours, but they are more vulnerable to acquiring them, due to the nature of their challenges. They are, however, born with an innate ability to be socially successful, as long as they are given the tools along the way’
(Victoria Ralfs)

A lot of friends in the DS community are applauding it but I’m not sure that I entirely agree. Evie definitely has traits that are linked to her DS and sensory processing disorder. Things that aren’t learnt, they’re just a part of who she is. I sort of see what the quote is getting at but I feel it also misses a major point.

It really got me thinking.

Why does it matter?

Why are we so hung up on comparisons and ‘normality’? Why on earth does it matter?

We put ourselves under so much pressure to conform, to fit in.

Over the last 9 years I’ve learnt that conforming is tedious, stressful and quite frankly boring.

Evie grabs life by its throat and does exactly as she wishes. She is a free soul and as infuriating as that can be at times, it’s also incredibly rewarding. It’s a novel way to live, to not care about what others think of you. This isn’t to say that she doesn’t care full stop because she does. It’s just on a different level of thinking.

If she doesn’t want to go to school I know it. Obviously she goes but under significant protest.

If she doesn’t want to talk to you, she won’t (as her 1:1 had fun with yesterday).

She doesn’t conform to society’s expectations of her. She is free. I always know exactly where I stand with her…she’s not shy about coming forwards IF it’s something she wants to do.

Just ask her teacher who received a full smacker on the lips at the end of her part in the school play.

Why did she do that?
Was it to embarrass them? No

Was it because she wanted to? Partially

What was the real reason? She wanted attention and she wanted to make the whole audience laugh…and laugh they did. Until I cried in my case.

Could you imagine being able to say exactly what you wished to that person who’s annoying you? Generally we bite it back, we phrase our words carefully. Not my daughter – she’s a plain speaker. Mind my mum used to say that I was honest to the point of brutality but Evie is beyond even my remit.

I love that.

I love her honesty. Her enjoyment.

We all try so hard to conform and make our children conform. Yes it is important and Evie will conform to an extent…when she feels like it. But ultimately there is no such thing as normal.

It makes me think of the stigma attached to specialist schools, a stigma that I find infuriating. There seems to be a belief or even a movement from a certain sector, that if you send your child to specialist school then you have failed them. Mainstream should be the ultimate aim.

I’ve put myself and Evie under that pressure. The result? One unhappy little girl. Evie is an incredibly social young lady. She knows who she likes but she also has an awareness of being different. She knows that she has Down’s syndrome. She may not know the full impact of that but the words are enough for now.

Whilst some children with DS sail through mainstream, for others, like Evie, it was too much. Not because the school didn’t do enough because they did. But because of who she is. She needed the support that specialist school gives her. She currently has a dual placement arrangement and that is working for her, mostly.

Specialist school is exactly that specialist. It targets and works with children who need that additional level of support. I had a debate recently on twitter about this subject. Whilst Evie can have speech and language therapy, OT and all other manner of supports in mainstream school, in a specialist setting they are on site ALL of the time. Importantly the class sizes are also smaller. She doesn’t feel as overwhelmed, she makes friends easier as a result.

It’s a one stop shop for her additional needs. She does need extra support and that’s ok. If we acknowledge that she needs this as her parents, as her professionals then we can help her. Being realistic is how we help her best. It’s not being fatalistic or “giving up”. It’s being aware of her as a person and fighting to get her the right placement for her, not because of what is expected.

Incredibly – contrary to popular belief – not all children with Down’s syndrome are the same! Who knew?! They are individuals with independent thought and feelings.

Quite frankly I don’t care whether my children’s school is specialist or mainstream. As long as the setting is right I couldn’t care less about the name. As long as they are happy and learning to the best of their ability, what does it matter. Society as a whole seems to think that specialist schools are below par, under what we should aim for our children. When nothing is further from the truth.

Perhaps if we all stood back a bit and stopped competing about these things; if we just allowed ourselves to be less bothered by others’ views in circumstances such as this, perhaps even if we were a bit more like Evie then things would be easier, better…hell even more fun.


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