I told her that I hoped she would keep these special stones close, as they were all things I wished for her to have in life. At the time I bought them, I also bought the same for Sasha, thinking she would go through the same special event two years later. Well, that hasn't worked out, but I do still hope for the same things in Sasha's life.
Last night at bedtime, Sasha told me 'all the people I like don't like me, and all the people I don't like, like me too much'.
I wasn't too concerned about the second half of this, as I could easily understand where she was coming from, even though her feelings were a little mixed up. She was very poorly with tonsillitis over half term and was off school until Wednesday this week, meaning she hadn't seen any school friends for a week and a half. She was nervous about returning to school and wasn't looking forward to being crowded by her classmates (particularly the boys; there is one who tells her he loves her all the time apparently, but this is no laughing matter. It annoys her immensely). Sensory issues play a big part in this; too many voices asking questions of her and over-excitement in the air are very stressful and cause overload.
We got to the playground this morning and sure enough the lovely girls from her class came dashing over to ask how she was, and if she was better, and to tell her what she had missed. Sasha just buried her head in my coat and refused to talk to them, which of course seems a very rude thing to do. I'd been expecting this and had even tried to talk to her about it at home beforehand so she could try and react appropriately, but that just wasn't possible for her. Her peers have been in class with her since Reception, 4 years now, and they are pretty understanding. Actually, I'm not sure they can or do really understand, but fortunately they seem to not take Sasha's actions personally.
The first half of her expression last night was the first indication we've had that Sasha doesn't feel like she is part of the friendship groups. Up until now, we've not felt that she was aware of her differences, she was more focused on having the control she needs. Whilst autism is not a secret in our house, it's not something we've had chance to discuss directly with Sasha as we've been waiting for the right moment, for when she starts asking her own questions. It'd be a bit heavy to just sit her down and come out with it one morning...
When we saw the out-of-hours doctor at the weekend, he asked me several leading questions about her refusal to take medicine, meaning I eventually did have to tell him in front of Sasha about her autism, something I was trying to avoid doing as it's not been discussed with her. I thought the diagnosis would be written clearly on any doctor's notes, but apparently being an out-of-hours appointment meant they get no notes... Sasha was drowsy at the time though, and it didn't appear she had heard me. Maybe she did?
At bedtime tonight, Sasha came out with the following, unprompted:
'I don't like school, it's only about reading and writing and I don't like doing those. It's so boring. I don't like learning. I don't like writing no matter what, it's so boring. Nothing at school is fun. Nothing at all is fun.'
I tried to talk to her about this, and explained that we may have to try other ways of learning, and find ways of making it fun, but she replied in an agitated fashion 'there is no way'. I explained how learning was necessary for everybody as we grow up, so that we can hopefully get jobs to earn money to buy the things that make life fun, and her response was 'I don't feel like doing work when I grow up, I don't feel like doing anything. I just want to do what I want to do.'
She had an upset tone when saying all of this, and was getting progressively more worked up about it as we talked, so I couldn't discuss it too much or it would have led to a full-on meltdown.
I know it's difficult to read these words and understand the significance of them when you haven't met Sasha, when you can't hear her speak them for herself. Even when you know that Sasha is diagnosed with autism, it's difficult to grasp the full picture here. This wasn't a petulant 'I don't want to go to school'. This was a cry for help.
As I lay on her bed it felt as if we were at the very start of a long, dark, narrow passageway which meanders on indefinitely to CAMHS (child and adolescent mental health services). This has been blocked off by a heavy wooden door previously, but right now it feels as if an invisible, cloaked gremlin has just started to creak that door open a tiny bit, beckoning us in.
I'm scared. I've heard from so many other parents of children with special needs of how their children are being brought down by mental health issues; low self-esteem, self-harming, or constantly talking about and then attempting suicide. These parents are trying to reach out for help, but nobody is there. No-one is listening to them; they are being passed around like hot potatoes, rarely making it to the front door of any service and if they do, very little help is offered.
Sasha told me that she hates Golden Time. Friday afternoons, the one time in the week which is supposed to be fun, a reward for the children at the end of their busy week. When asked why, she replied that it was boring because it was just about doing what the teacher wanted, playing her games or watching her DVD choice.
I think we're not far off school refusal, and I'm scared. Being trapped indoors for all of half term and the days after gave me a glimpse of how easily my own independence could be taken away - how selfish of me! I applaud loudly those who choose to home school for their own good intentions, but I applaud even more those who are forced into the situation and try to make the most of it. I can see how easy it would be to be pulled down into a depression; the fear of not doing a good enough job would be a key factor. I wasn't born to be a teacher; I don't know enough myself! Couple that with the fact that I can barely remember what happened last week and I'm thinking it's a real recipe for disaster.
Tonight Sasha has gone to sleep with a tear running down her cheek, grumpy with me for not being able to make school more fun. I told her I'm working on it. We need help though. I feel sad for her, and for me if I'm being honest. I need to dig deep for that steely determination in me, to find an answer that we haven't yet come across. How will we provide our little girl with the education she needs?
Linking up with the lovely Victoria at VeViVos for #PoCoLo, in the hope that somebody, somewhere, has the answer.
