asparagusmama (asparagusmama) wrote,

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Aaagh! It's all gone horribly wrong! Or why I hate the Daily Mail!

What a lovely weekend I had. My first respite in weeks. I caught up with sleep and housework while my Mum took my daughter and the washing. My daughter had a chilled time and she and the clean washing came back yesterday afternoon, her then seeing her tutor for a productive hour of English and Maths.

Then we went to the Meet the Tutor and your classmates at the secondary school she'll be going to. We were meant by the SENCOs and the Student Counsellor and all was going well. Off she went separately to the crowds of girls with one of the SENCOs to her future classromm and off I went to a hall to be talked at by the Head and her key staff for lower school (and watch some year 8 girls dance - well, done girls, lovely dance, lovely costumes, well choreographed, hoped my daughter would feel confident to join the class).

Then my daughter got left for what was supposed to be two minutes without support while the SENCO fetched me, but a series of unfortunate events occured - crowds, wrong disabled lift key, more crowds, more and more crowds, having to park the wheelchair and stumble up stairs and through more crowds...

Meanwhile, my daughter is alone, at the back of a room with 30 girls, 60+ adults plus younger random siblings running about and being noisy. It's 27 degrees plus humidity!

We get there, daughter not there. My phone won't switch on. The staff go looking. We all panic. My phone decides to work. She's at home, in tears. She ran all the way home, on her own, over 2 miles!

I get home. She's hyper with anxiety outside. She's been banging her head inside before I got there. She finally sleeps at 1.15am.  Only to awake 45 minute later to be anxious about head injuries as well as school.

She has an all day taster next Monday and Tuesday that she is now so anxious about and refusing to go to school. I'm not capable of homeschooling her through secondary education. We still haven't sorted out the statement, if it happens. Her GP is still being a total prick about neurologists and sleep and stress medication and understanding the situation at all. My GP is still being a bit useless on the ME and I can't get more care from adult disibility becasue my role as a parent of a disabled child, or my role as a parent full stop, and its adverse effects of my energy levels and ability to self care are not taken into consideration (computer- it say no). We can't access a autism base until a) we have the statement and b) its amended by the fact we've tried and failed mainstream education, ie tortured my daughter a bit more and turned her completely off the education process!

Oh yeah, and the new 'lone parent advisor' at the DWP deleted all the info about how day to day living is impossible for me, how if I get washed, drssed and brush teeth I'm too exhausted to make and eat breakfast, etc.  etc. and instead wrote 'not choosing  to look fo work at his time'

No choose? Not choose?  I have two degrees, qualifications, I was offered a funded PhD and a research and teaching post!  As if I chose to not take it and be to be this exhausted, in this much pain, to have my muscles twitch and jerk and ache and burn everytime I load the dishwasher or go grocery shopping. My choices are do I wash or dress and cook a gluten free/dairy free evening meal or do I use up a great deal of mental and physical energy to support my daughter into washing and dressing! And then, with the lack of support for my daughter I just have to push and push and crash and burn rather than pace and rest which pushes the neurological symptoms in permanance and further damage...

Oh yeah, I chose to have a serious neurological and a gynological condition and gasto problems and mobility problems... or rather, apparantly I chose to 'scrounge' rather than take my opportunities where in an AU I would now, well, be a lecturer earning far more than my stinking IS and DLA and my daughter's DLA put together. I'd own my own home. I'd be able to drive and own a car. I'd have sent my daughter ot private school, I'd have had the money to pay for the right diagnosis and support of the dyslexia and autism from an early age and she wouldn't have had to go to a failing primary school becasue of living in social housing with no car and mobility problems and then she'd have not had that bang on the head and her autism would not be complicated by a second memory dysfuction caused by a head injury and I'd be able to pay for the right schooling and the right support...

Choose this? God chose this for me, and I try to have faith and accept this, but what, in this country, has happened to 'there but the Grace of God go I?' Why do we demonize and stimagtize the less fortunate, the disabled, the sick and the vulnerable. Do they know how hard it is to even get even one sixteenth of the help and money you need to live a half a decent life as these judgemental, healthy bastards in the government and the media.

People on incapacity, sick and disabled benefits are incapacitated, sick and disabled, their lives ar hard, unimaginable hard, and they suffer the most from cutbacks and nasty attitudes to the poor and the 'benefits cheat' (who are few compared to the seriously ill and disabled).

Inclusion is good for the kid in the wheelcahir or the deaf kid, inclusion is impossible for those on the spectrum who can't cope with noise, crowds, lights, verbal instructions, non verbal cues. It's not aparteid, it's giving thes kids a chance to learn to cope with the neurotypical world so as adults they can contribute and not sit on benefits, their chances destroyed before they began by moronic primary school teachers with no understanding of autism!!!!

Wow! Angry. Where did that come from. Rant over.

PS Not angry with new possible secondary school - lots of understanding there, just circumstances, and autistic people don't deal well with accidental changes in the best of circumstance, and this was the very worse.
Tags: anger, anxiety, autism, disability rights, me/cfs, sleepless nights
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