Post by beajie on Sept 6, 2006 22:56:00 GMT
As some of you know, I'm doing research into what has been called by DLA 'the most seriously autistic spectrum family in the UK'. This family is the Case Study in my PhD. Today is Wednesday, the day I have to write my agony column. This is what happened.
Let me put you in the picture with the family. Mum is 47, privately educated, SRN and ADHD. Her dad, whom she's never met, is Jewish American, a Doctor, and Asperger's Syndrome. Her mother is English Rose, ADD, never worked as she never had to. Mum has five children. Eldest is daughter, 23, ADHD but possibly HFA (High Functioning Autistic) now working in a local hotel as a PA, but no clue about social intelligence. Next is 18 year old son, HFA, ADHD, Tourette's, and SPD - once a dysfunctional trainee chef, now hanging about since he came into £25k at 18 thanks to being misdiagnosed as a child and the resulting court action against the NHS. Next is 17-year-old boy thought to be OK but possibly the most seriously neurologically dysfunctional of all. Then, by a different father, an 11-year-old with Asperger's and dyspraxia and Sever's Disease. Then a 10-year-old, ADHD, had menigicoccal septicaemia at 3 weeks, serious speech disorder, diagnosed last month with Tourette's, dyspraxia, and epileptiform activity over the speech centre of his brain.
With me so far?
Please bear with me. This family's crises take every moment of my life. I've been working full belt for 10 months to try to get them the help they need. DLA had lost their papers and they lost their benefits (now sorted at last in June after I got the MP involved), Social Services had ignored them. After five months constant barrage from me (via the MP) they're sort of in place and trying to catch up. Benefits, after reducing them to penury for four months, then over-compensating them for one of their failures, and under-paying them for another, is still unreachable by phone or letter, and is unable to put things right. Psychiatrists, psychologists and paedriatricians are still trying to work out who does what for whom, and are running round like headless chickens since i got involved. It's a daily nightmare.
Today the youngest went back to school. He's supposed to have a Statement. It hasn't been done. Moreover, since the epilepsy diagnosis was done in the summer holidays, none of the staff know about it and the useless headmaster, informed at a meeting today, has already sent the kid (he has to know his boundaries!) into seizure meltdown at home. There's a school camp this week for that kid, and no one has taken ito account that because of his epilepsy diagnosis he'll now need 24-hour supervision, so he can't go as they can't provide it, but every other kid in his class will go - how lovely! The eldest has signed up for four different college courses and is now in tantrum mode because he knows he can't cope with any of them. The 17-year-old got into trouble with the police in an incident of street-fighting which they're trying to pin on him, and in which he got seriously injured, four weeks ago, and have decided to give him a retrospective Fixed Penalty Notice. Last night the 11-year-old rang me and said he was never going to school again and wanted to be home-tutored. i had to talk him roubnd for an hour and a half.
All day today I've been counselling mum, talking to her Social worker, talking to the Social workers for the two youngest, talking to the Home Office about whether the Fixed Penalty Notice for Disorder should be applied to the 17-year-old, as the local police are trying to apply it (no, is the Home Office answer), advising mum as to her complaint against the headmaster via the school governors (headteacher disciplined the child in assembly this morning for breaking wind - a side effect of the anti-epilepsy medication), listening to the two oldest fighting, and the youngest two throwing tantrums and fighting, and out of the corner of my eye, the sound turned down so I could do my advice thingy, watching Crouch score against Macedonia.
I'm so tired, emotionally drained. In between all this I did my column. Now it's time to crash and burn. And tomorrow will be the same. And you know what? It's a labour of love. Unpaid. It's so time consuming that I can't earn a living, except for this one weekly column, a drop in the ocean.
So, how was your day?
xxx
Let me put you in the picture with the family. Mum is 47, privately educated, SRN and ADHD. Her dad, whom she's never met, is Jewish American, a Doctor, and Asperger's Syndrome. Her mother is English Rose, ADD, never worked as she never had to. Mum has five children. Eldest is daughter, 23, ADHD but possibly HFA (High Functioning Autistic) now working in a local hotel as a PA, but no clue about social intelligence. Next is 18 year old son, HFA, ADHD, Tourette's, and SPD - once a dysfunctional trainee chef, now hanging about since he came into £25k at 18 thanks to being misdiagnosed as a child and the resulting court action against the NHS. Next is 17-year-old boy thought to be OK but possibly the most seriously neurologically dysfunctional of all. Then, by a different father, an 11-year-old with Asperger's and dyspraxia and Sever's Disease. Then a 10-year-old, ADHD, had menigicoccal septicaemia at 3 weeks, serious speech disorder, diagnosed last month with Tourette's, dyspraxia, and epileptiform activity over the speech centre of his brain.
With me so far?
Please bear with me. This family's crises take every moment of my life. I've been working full belt for 10 months to try to get them the help they need. DLA had lost their papers and they lost their benefits (now sorted at last in June after I got the MP involved), Social Services had ignored them. After five months constant barrage from me (via the MP) they're sort of in place and trying to catch up. Benefits, after reducing them to penury for four months, then over-compensating them for one of their failures, and under-paying them for another, is still unreachable by phone or letter, and is unable to put things right. Psychiatrists, psychologists and paedriatricians are still trying to work out who does what for whom, and are running round like headless chickens since i got involved. It's a daily nightmare.
Today the youngest went back to school. He's supposed to have a Statement. It hasn't been done. Moreover, since the epilepsy diagnosis was done in the summer holidays, none of the staff know about it and the useless headmaster, informed at a meeting today, has already sent the kid (he has to know his boundaries!) into seizure meltdown at home. There's a school camp this week for that kid, and no one has taken ito account that because of his epilepsy diagnosis he'll now need 24-hour supervision, so he can't go as they can't provide it, but every other kid in his class will go - how lovely! The eldest has signed up for four different college courses and is now in tantrum mode because he knows he can't cope with any of them. The 17-year-old got into trouble with the police in an incident of street-fighting which they're trying to pin on him, and in which he got seriously injured, four weeks ago, and have decided to give him a retrospective Fixed Penalty Notice. Last night the 11-year-old rang me and said he was never going to school again and wanted to be home-tutored. i had to talk him roubnd for an hour and a half.
All day today I've been counselling mum, talking to her Social worker, talking to the Social workers for the two youngest, talking to the Home Office about whether the Fixed Penalty Notice for Disorder should be applied to the 17-year-old, as the local police are trying to apply it (no, is the Home Office answer), advising mum as to her complaint against the headmaster via the school governors (headteacher disciplined the child in assembly this morning for breaking wind - a side effect of the anti-epilepsy medication), listening to the two oldest fighting, and the youngest two throwing tantrums and fighting, and out of the corner of my eye, the sound turned down so I could do my advice thingy, watching Crouch score against Macedonia.
I'm so tired, emotionally drained. In between all this I did my column. Now it's time to crash and burn. And tomorrow will be the same. And you know what? It's a labour of love. Unpaid. It's so time consuming that I can't earn a living, except for this one weekly column, a drop in the ocean.
So, how was your day?
xxx
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