Tuesday, June 21, 2011

Too awkward to discuss

Well face to face with anyone within Deborah's hearing range. Would be totally unfair. But I have no idea of what to expect from her, as such I am constantly comparing her to other children of a similar age and end up really disappointed. Isn't that a simply awful thing to think about one's own child?

She is so beautiful, and so similar to me and my dad. It's really hard to know how to react to it all, I try to just be with it, but there is so much stuff that trips me up. After a rather thrilling car ride, when I was stuck in the back with a reluctant daughter who did not want to be in her car seat and who really enjoyed all the attention she got for trying to escape - 2 weeks ago, my bruises are still healing. It's the karmic nature that's tripping me up, the physical attacks from a close female relative, too similar to what I had with my mum. Sure that's apparently how it all works, Rev Olwen once said all these cycles come round again and again but it's tough. So many of my reactions are based on things long passed.

It's also tricky as I simply don't know what to expect and I don't know exactly where the tantrums are coming from. Plus she, like many autistic people, is almost super sensitive to emotions, more so than her brother. It's odd, she doesn't understand the outright expression of emotions, but the subtle feeling of it can have her in turmoil. Last week of PMS was fun for both of us...

I'm trying to find more support - home start have no available volunteers but have asked them again. NAS do volunteers but they only come out when your child is over 5. There's plenty of online support and phone lines, but I cant guarantee I can actually talk on the phone so I tend not to use those. I do use an online forum but find my social anxieties are sometimes a little triggered. The local educational psychologist is doing a brilliant project, but her support will be coming to end soon when she will pass me over to the local pre school teacher counsellor to do Deborah's statement. This would normally done by the school that the child is in, but obviously Deborah is not in the education system at the moment. The local special school would be brilliant for Deborah as she would get SALT and OT as part of her lessons which I think she really needs. But to get there, she needs statement and of course she's no longer in the school because of how traumatic it was for her. So fingers crossed for that one. The special school has a family support worker and an autism support worker, I'm trying to access these at the moment as well as someone else who advises on continence.

It's all rather a lot to do.

At the same time, Michael is coming on leaps and bounds, wakes at 4, loves people, chips cbeebies and trains and has the most staggeringly deep voice. They both need nurturing not a mum freaking out about being 40, and feeling tired and unable to study and completely overwhelmed by the whole disabled thing.

Tried out Kalms last week, they were very effective and also compatible with breastfeeding. They even contain hops which boost milk production. Because they were so effective I felt relieved I wasn't "seriously" depressed and resolved not to take them. Bad mistake. I've now decided I will take them when I am pre menstrual as they do work and as I only need a 3rd of the recommended dose, well it's just fine. I really should get over myself.

This bit is really quite hard. Need to remember it won't last for ever.

2 comments:

Ailbhe said...

Oh poor you. I've dropped out of Facebook but must meet up with you soon. I do know someone who might be able to help you find help - I think there's a Friday group in Reading somewhere.

Gingerpig said...

Thank you Ailbhe, I had noticed you'd had enough of facebook. It's hard but it's ok, expect more heartfelt whinges here. This is a good place to get them out, clarifies and I can move on.

A big YES to meeting up soon though. D is still quite anxious but getting there thankfully. Our bus route has now changed which means coming to you would be even easier, so we will.