Awareness

I have mentioned before about how I struggle with understanding why people encourage “awareness” of rare diseases and syndromes. I think I even said before that awareness is all well and good but it doesn’t make it go away. It doesn’t fix it or cure it… in our case, RETT syndrome.

The last blog I posted, I wrote off the back of a meeting that quite honestly had taken the wind out of my sails.

The school I wanted N to go to turned her down. Their reasons behind saying no, were all very understandable. But the one thing I came away with, that has been continuously echoing around my head since, is that actually, they didn’t know enough about RETTs.

They saw all the raw symptoms of it on a weekly, if not daily basis, having N at their nursery. But if we are being really honest? They are only aware of the surface stuff. The nitty gritty and dare I say it the “positive” stuff? They don’t see.

I’ve been incredibly strong minded on my beliefs about Niamh and her potential.

I follow girls all over the world who have RETTs and it is incredible what they do.

I’ve mentioned before Molly Paris, a girl in the US who is off to Florida State University to study engineering, off the back of studying at a mainstream school. I also want to mention another girl, Jo Picard who is earning a degree in political science.  

Without sounding like a broken record, the majority of RETT girls in the US go to mainstream schools; they even go on the school bus… with their friends.

For me, the penny has dropped; this is what spreading awareness is for. RETT girls have potential. Absolutely fucking bags of it.

They have to work harder and have been pushed back by their regressions, and have to live with some of the most debilitating difficulties you could imagine.

But their ability to learn? Absorb information like other kids at school? Still there.

OK, so they can’t get it out in the same way, Niamh’s not going to be hand writing essays any time soon, but there are other tools that enable these girls to have the same education the rest of us are entitled too. 

I said that I had a hard pill to swallow, a pill of acceptance that my child has severe disabilities. A pill that surrenders to the fact that perhaps my child’s life choices have been taken away from her by her disease.

Fuck. That. I take back what I said.  

It’s our inability to see past someone’s physical differences and inability to communicate like “normal” that takes away her life choices.

It’s us. We do that, we take away opportunities because we don’t give them a chance, because quite frankly? We don’t understand or know enough to believe they are as capable educationally.

I get it. Her Syndrome makes her completely outside the norm. This kind of “different” that she is? It makes people uncomfortable.

We are supposed to be living in a time where differences are accepted, where we are adaptable and able to think outside the box. Not ostracize someone because we don’t understand exactly how they function or because they look and move differently or can’t communicate in the same way.

Not only do we feel uncomfortable being around someone “different” but we also decide to pigeon hole them with a whole host of other people who have other “differences” and pop them all in the same box.

If they can’t verbally speak, they must be thick and unable to learn. Add to that the inability to use your body with ease, to do anything for yourself? Yeesh, well we’ll just not bother.

Niamh is four and learning to speak a completely different language, a Tobii Dynavox “language”. It’s the same piece of kit Stephen Hawkins used to communicate. She’s getting really good at it, and we actually chat.

The kid doesn’t have learning difficulties; she just has a different way of putting it down on paper.

I’m not sat here lecturing, believe me, I have been on the other side of this. I’ve made assumptions and felt uncomfortable when being around severely disabled people before, I’ve been ignorant and completely unaware.

Niamh is an intelligent little girl. If you hang out with her for long enough you learn this. She is completely switched on and aware of everything. She is polite and socially aware. She is caring and loving and hugely funny. She is not disruptive, nor would she ever want to be.

As I’ve sat having to go through EHCP drafts and listening to people tell me what a school “may need to put in place” to be able to accept Niamh, I’ve realised this whole thing is a complete double-edged sword.

Whilst writing about N’s abilities, or there lack of. It creates an undertone that she comes with complications. She doesn’t, she actually comes with a TA. Someone who already knows the ins and outs of her syndrome and will help N with the bits she cant do.

In the words of Blue Peter, “here’s one I made earlier”.

Obviously it’s important to know that N can’t be left on her own on the toilet because she wouldn’t be able to get off again. Or that she can’t feed herself or hold things. But it’s also important to know that if she has a one on one TA everything is possible. 

All the complications and intensity of her inability to do things for herself, that one person alleviates it.

At home I’m her P.A., we have absolutely no “special things put in place” other than an eye-gaze (Tobii Dynavox) for her to be able to talk with us, and a TomCat trike instead of a bike. That’s it, we get along absolutely fine.

I apologise to those reading this who are going to view me as an upset mother who’s on some pious mission for equality. Perhaps that’s almost exactly what I am. So, I’ll take it… minus the pious bit. I’ve researched enough to see all sides of this situation.

So in the midst this rather passionate rambling I suppose what I’m really trying to say is… I get it now. 

It really is my responsibility to spread awareness of Niamh’s Syndrome, because it’s scaring our society off. It’s stifling opportunities, not just for Niamh, but for the schools and the children there who could have the privilege of being Niamh’s friend, to learn about the diverse nature of humanity and how Niamh’s differences don’t define who she is.

So, to those who are uncomfortable by it, put off by it, who feel Niamh’s “differences” are a hindrance, that they might cause problems later down the line. Or that really she’s just a bit too “outside your box”…

Just watch her.