The other day I was reflecting on how much has changed in the two years since The Rose got her diagnosis.

Of course nothing much has changed at all for The Rose (apart from leaping the massive chasm from being barely 15 at school to almost a woman at college), but right at the beginning she thought it would. She thought now she had a name for her feelings she’d be ‘cured’. Even more – she thought she’d stop hurting us.

It took a whole year or so after diagnosis, before she realised how things were for her and indeed how they would become.  She does not ‘accept’ this. She is resigned. She hates having Aspergers. There is no upside for her – she’s not gifted or brilliant but she’s incredible at being her and she has such personality.

It pours out of her like sunlight and diamonds, in great beams and rays and huge gloops and hic-cups! It’s inconsistent. It’s patchy. It links to nothing and is going nowhere but it lights our meandering way with spotlights on the path to whatever future we are heading for.

I hope for these blogs to show  that The Rose is a unique, interesting, funny and lovely person NOT simply an ‘Aspie’. That she has the sunniest nature it is possible to have when your world deals you hailstorms and thunderclouds. I want this blog to celebrate her normality – not be too reverential or self consciously polite just as we would be when telling stories about typical people.

So I  apologise for the uncharacteristic negativity in this post today, it’s just that I came across this and I’m gutted:

The Rose posted this on FaceBook just after her diagnosis. I didn’t see it until two months or so later but I kept it.  It was a window into a then very much more closed world than it is to us now. It made me unspeakably sad – not only that I’d missed it at the time – but that her optimism was then so strong.

Six months after her post of hope she wrote this:

Mum

Sometimes I think I am a horrible girl. I have angry thoughts that want to come out and hurt people with but I usually keep everything to myself and am quiet and polite, but inside I am boiling like a volcano. 

I see my friends talking and I know what they are saying but I don’t know how to join in. It makes me feel left out and angry. 

I get angry at home and let it all out because I know it is safe and that my you and Dad will never leave me.  

I forget things that I am supposed to do, like bringing home letters to be signed or remembering to go to revision classes. I miss course work at school because I don’t know what to do.  

I try to do my homework at school so I don’t have to bring it home to worry about it. My teachers say I work hard in class and make a great effort but I know I am going to fail my exams and I am scared.

Autism stinks. If I could take it away I would. Not for a peaceful house or for an easy life – but because it hurts her so much.

Two years down the line I don’t think she’s hurting as badly. I know home is more peaceful and she loves college.
She’s full of hope again – but now I’m the one who’s scared. I don’t know what’s next.

That’s just for today though – because tomorrow looks like it just might be sunny.