Tuesday, July 26, 2011

coping with...

Not quite what you might think. Talking to a mum today whose ASD child attends the school to the pre school that D attended. She thinks they're great because they cope with her son. He has meltdowns at home that last up to 2 weeks whenever anything changes at school.

It took me a while to twig that actually I want Deborah's eventual school to do a hell of a lot more than just cope with. I agree, her behaviour is certainly a lot more challenging than most 4 year old's - but she has a good excuse, and it's not as if she's autistic by choice. I'm slowing down on feeling guilty for not wanting to home educate - the children are leading me in that one. Because of Deborah's language impairments I want her to be somewhere where the staff have specialist knowledge of how to support her and cherish her and not think she's inadequate, or that she just has to get used to it or any of the crap we had before. Michael is desperate to socialise, he had 11 year old cornered today in the park offering them imaginary chips and sausages, and every time we walk past a school or nursery , he demands to go. I've signed him up for next Easter, and he went very small and quiet when we were in the nursery we're thinking about - until he got outside that was. Then he loved it. So we'll see.

As for Deborah, I'm beginning to see that the confusion with my dad's behaviour is a good thing. Sure its daunting to be told that your child is disabled, that it will be life long and no one can currently predict outcome. All the signs are so far looking as if D has normal intelligence, she does age appropriate things which is great. So on one hand I have the diagnosis, the knowledge of her disability, the actuality of having a frequently very cross and extremely frustrated child - and on the other hand I have my family. All hugely intelligent, late developers, crappy social skills and often quite brilliant in their own way. Add into this mix, my understanding of the social model of disability (through my amazing friend Sharon Woodward, who died age 36) and I kind of feel quite upbeat about the whole thing. Yes the daily grind of screeching and chivvying is still there, but I'm moving away from the professional's viewpoint and developing my own.

It's also about my feelings about everyone's right to be just who they are -a closer development of a life-long interest. Yes its been tough having a bi-polar mum and an autistic dad, but it's prepared me well for this moment. I'm stopping feeling guilty for not realising earlier that D was so different - if you'd had my family, you'd understand :) But, because I do have my family, and am now working so hard to make sure D get's more support and understanding than any of us ever did, I'm hoping she will - well it's up to her. I just hope she's happy.

Friday, July 22, 2011

Goodness - back to period pains like early labour. So today was a write-off.

The self hating not in control but just so tired and cranky.

Monday, July 18, 2011

Read and remember

Well - that's an instruction for me at least. So the next time I'm attempting to save the world/ensure my children have stress free lives whilst being the biggest stress-source ever/ control time and space continuum as we know it so that Deborah's ASD will not be a drawback in anyway whatsoever, whilst not so secretly dealing with feelings of guilt, denial, grief and rather a lot of guilt, - I need to read this post.

Here goes - Rachel - relax, You are fine - this may or may not feel true. You are a loving mother, even if you feel incapable of this right now. Actually - that last, although not a nice feeling is ok in the larger scale. It's actually good to accept and listen to your non-lovingness, it won't go until you do. The world will be what it is despite you.

Rachel - your father very probably had ASD. His are the most important mental foundations that you have built yours on. If you are feeling highly stressed, it is most likely you have gone into default, scared mode, and these are the patterns you are using to try and solve whatever is going on. It won't. Dad was globally compassionate, but as an ASD person (which you certainly have many traits of, although for you the jury is out), he also feared it and was constantly trying to fix it. So are you Rachel. You grew these foundations as a response to your father trying to support your mum through bi-polar. There were decisions made that adults could and you couldn't. Trying to control it all by thinking that you are responsible for your mum's bi-polar simply by being born and then punishing yourself for every failure (how dare you fail when you have the gift of life and have ruined someone else's?) and every success (how dare you succeed at anything when you've ruined someone else life, you deserve nothing) - well it doesn't work.

My intensity of self hatred is really quite something. It kind of explains why I'm too afraid to succeed, fail and often quite ambivalent about getting out of bed. But - it's also ok. I just need to know it's there, remind myself of it's root causes and move on. Last night I was full of the worst thoughts, had been crying in desperation in the playground as I'd been angry at D and found her ASD traits completely annoying. Ian was really cross at me, and I was cross as we'd been away where we'd had full support by staying with family and it was so blissful that it was the intense fear of coming home that triggered it for me. Deborah has been getting really challenging recently, pinching and drawing blood every day for over a fortnight has been particularly hard. Coming home was hard as she's stopped on holiday when we all relaxed and I didn't want to be so stressed I started her again.

But on the upside - we now have a specialist SALT visiting once a month who will help D communicate with us and vice versa. She's particularly keen to work with D's anxieties. Thanks to the ed psych pushing, we will also have the local pre school teacher counsellor visiting fortnightly, and I've arranged for a worker from the local children's centre to come fortnightly to encourage play skill - both kids will benefit. I'm also talking to the gp soon to see how they can help and I'm hoping to get a Home Start person soon too. And we have an OT appt in September, plus there are ways to access things to start now, and the SALT will be sending me communication stuff to use at home, so since 31st March this year (when we got the appt) - well I've been busy.

As for the rest - just remember, breathe out, let go and walk on. Be Rachel.