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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.


( 9 comments — Leave a comment )
Jun. 28th, 2011 09:52 pm (UTC)
It does sound like you've been having a really hard time as of present. But never give up faith.

If you believe and continue to believe then better blessings will come your way.

And i think that the comment about you not being bovered to find a job is really harsh and mean to say. They evidently haven't read any of the entries you have written. If they had then they would relise what trials you go though.

I promise that i will pray for both you and your daughter.
Jun. 28th, 2011 10:25 pm (UTC)
Thank you. We really do need prayers at the moment, particularly my daughter.
Jun. 29th, 2011 05:13 pm (UTC)
*hugs* I really do hope you'll things will start to look up again. And I think anyone saying that you don't try hard enough hasn't bothered to listen to you. :/
Jun. 29th, 2011 07:07 pm (UTC)
Thanks. def need hugs.

The SENCO came to visit us at home, the head one, running the Team Around the Child. While she was there the Y7 head phoned to say the Headmistress (who seriously must be Rebecca Front's little sister!) was so distressed that she was offering to switch forms if that would help.

I can't fault the school for understanding and support. She's not officially there until September but they've accessed funding to buy a trampoline to replace the broken one and the SENCO is offering to come and take her out once a week to give me respite!

If it doesn't work it will just be because she is just too far on the spectrum for it to work.

Primary to secondary is just chalk and cheese.
Jun. 29th, 2011 08:14 pm (UTC)
Well I'm glad that they are trying to help. It shows that if it is going to work at any school it's more likely to be theirs than another's, which is a ray of light albeit a small one. I'll keep my fingers crossed that things go okay, even if I understand your worries. *crosses fingers* Best luck for BK and for you.
Jun. 30th, 2011 12:27 am (UTC)
*so many hugs*
I really don't know what to say because I feel that anything I say would be trite and our own struggles with with mum's DLA mobility component being dropped seem irrelevant in comparison. But yeah, DWP are dicks. Although at least the new school has potential.
Jun. 30th, 2011 08:48 am (UTC)
You're right, the DWP are complete dicks. I don't think your Mum's struggle is trite, no one's is.

All I can say is don't give up. Appeal.

When BK was 7 I lost my mobility and went down to low rate care all because of a different doctor even though the info was exactly the same. I appealed, lost, reapplied and then won, getting back to my orginal levels for an indefinite period. and backdated for 14 months, to the first appeal. I had an ATOS doctor and the first panel who didn't believe in ME. I was housebound for 14 months with an undiagnosed daughter and it was hell. But it did lead to social services assessing me, my care package and a wheelchair and stairlift, even if we were having the usual crap about my daughter's challenging behavioural problems were because she was caring for me! Huh! I offered them to put a camera in my house, see how I can't walk for days if I have to go up to my daughter's school for a meeting with my walking frame, see how it takes an hour to do a ten minutes walk, see how I have to lie on the path for an hour to get home. They didn't believe me! But every cloud, as they say, its the backdated DLA that pays for my daughter's tutor and I can think of those dark days and be glad, however bad it gets, it can be worse.

Appeal. Push. It's the only way to get anything out of these DWP bastards. They are saying no to everything to save maoney. don't give up, you have every chance of winning an appeal. You both know what your mum is capable of. You know you are not lying.

The school, if it doesn't work, will be because she is just too far on the spectrum. There is so much support and understanding, unlike the primary schools.

Thanks for the hugs x. *Hugs* back to your Mum. Tell her to appeal, if she isn't already, there are some good carers charities that will help you both. I know it is exhausted, but so is managing withur your mobility, which is a life. line
Jun. 30th, 2011 10:53 pm (UTC)
Mum's going to appeal, and has received a copy of both her recent assessment and her previous one, and the evidence is very similar yet the conclusions are entirely different. Also, Mum's got a wheelchair recently, but apparently her mobility is better. WTF? But we'll keep pushing them, because we know what she needs.
It makes me feel better to know that even though I won't be home next year, Mum's still got Dad and my siblings, so she's got the help she needs, albeit some of it from teenagers!

About bk, Mum has some suggestions, which you may well have thought of, but it was worth a try: has she got a mobile? Cos she could text you after each lesson, at least on the taster day, so she knows she has contact, and also call her at lunch to see if she's ok, keeping turning it into a half-day as a standby. Perhaps she could also have a card or something, and certain people she can give it to or show it to if she's anxious or freaking out so they can start to calm her down before it turns into an incident. Just a few thoughts.
Anywho, more hugs all round :)
Jul. 1st, 2011 04:39 pm (UTC)
Good luck on your Mum's appeal. it sounds as if she's just another victim of the new DWP policy of say no and hope they don't appeal to meet out targets. Or she got another stupid doctor who doesn't believe in ME!

However exhausting it is, at least at an appeal you get to meet three real people with whom you can state your case and explain properly how exhausted swamps you are the slightest thing.

I'm glas your Mum isn't struggling alone. Thank her for her suggestions, but as mobile phones are banned it may cause conflict. She's being met at the gate by a SENCO and will have a TA with her at all times and she can have a quiet place to go for break and lunch. It may be beneficial, because if she can experience how different it will be from the primary schools she may grow less anxious. Fingers crossed they get it right.

Thanks for the hugs. Hugs back to you and your Mum. Again good luck with the appeal.
( 9 comments — Leave a comment )



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