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.


Ailbhe said...

Oh, I think she will be happy. She very often IS, you know. Your dedication and devotion do show.

Tab said...

I totakky understand what you mean. debs needs more than 'coping with' she needs understanding and love.

I hope you find a solution for you all as you know I think BOTH your kids are fab (((((()))))