Life is not all Rosie

I haven’t posted for a couple of weeks. I’ve been feeling a little flat and worn down. The rain is not helping! The patchwork and other sewing projects lay untouched, gathering dust on my work table and I can’t remember when I last picked any knitting up. Everything is just a bit grey at the moment.

Rose is currently sitting her school based assessments, the exams that are going towards her GCSE grades and it is not going smoothly. She was only diagnosed with ASD at the beginning of March and although we already knew what the outcome was likely to be, finding out that she definitely is Autistic knocked her for six, just when she was expected to attend extra long school days to revise for the exams. Her anxiety is bad, her appetite has tanked, she’s losing weight and she has had trouble sleeping, although is usually so exhausted now that she is sleeping again.

The school have been great, but I think witnessing her vomiting into her hands or face mask from anxiety on the days she has forced herself in, made it pretty clear she wasn’t just trying it on. One morning last week we sat in the car right outside the main entrance with staff and pupils passing by as she retched repeatedly into a bin liner. She did actually make it to her exam that day. I’m on the phone to her learning manager most days as we try and steer her through this the best we can. She is literally days away from finishing the exams. CAMHS were helping up until the end of last year when they passed her over to the MAAT team for the final stages of the assessment process. Rose had made good progress with managing her anxiety at that point and it was agreed that their services were no longer needed, with an invite to contact them again should we need them in the future. In other words, back to the end of the queue should we need to join it again. If you know anything about mental health and anxiety in particular then you will know how quickly it can come on and I’ve had enough experience of CAMHS with two of my other kids to know that contacting them now to get help now is pointless.* By the time we get an appointment, schools will definitely be done for the summer and we might even have started Christmas shopping!

Rose starts college in September. Dear CAMHS, can we book sessions provisionally just in case? No, thought not. I don’t mean to give them a hard time. It’s not personal, it’s just frustrating that they are so underfunded. Whatever happened to ‘children are the future’? Without urgent extra funding I’d say the future is currently looking a bit bleak, especially when you consider the extra strain on the system due to the Covid situation!

So this is where we’re at right now. One day at a time, one morning at a time. I have to be careful when I talk about food in case it makes her sick. It’s generally safest for me to pack her lunch box up with dry pre-packed foods and pop it in her bag without consulting her. Some days she manages to eat a little at school, most days it’s nothing. If she manages to eat a few salty crisps before school that’s a good day. I gave up on the conventional definition of breakfast a long time a go. Now it’s just ‘food of any description before you leave the house’ and Rose finds salty dry foods less nauseating when she’s struggling. I tend to agree with her on that one. A mug of hot veg stock and some bread has often done the trick too but liquids aren’t going down so well in the mornings right now. I suspect her appetite will recover after this week once her exams are over, but I would like to reassure any worried readers that I do intend to contact our GP if it doesn’t. Hopefully I can come back here next week and report good things!

*It is not my intention to discourage anyone from seeking help. Please do seek help if you’re child needs it and do not hesitate to seek immediate help if your child is a danger to themselves or others!

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