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Asbergers child with no support from NHS Or private medical

(7 Posts)
Danielah21 Sat 17-Nov-12 10:31:39

Our son was diagnosed with partial auberges a year ago. His academic side is above average. His social side is also fine and his behaviour is good. However he was diagnosed due to his routine based behaviour. He struggles to get dressed in the morning and get really upset over his clothes. He founds it hard to express what he is feeling and that gets him frustrated even further. We were told that this is due to routine and the what he can control is his clothes. But we have sorted his routine, he has calendar at home to show exactly what we doing. School is also supportive and do the same. In the last months his upset over clothes has started to escalate greatly and yesterday I couldn't even get him to school as he has refused to get dressed. Treats don't work, threats don't work. We have seemed medical help and got turned down on the NHS, reason unknown and also on our private medical as condition is not acute. We have paid for 6 months of cognitive behavioural therapy out of our pocket as we had no choice and had to help our son. This has really helped but he has started slipping again. We can not possibly afford any more sessions. Went back to doctors yesterday and got referred to pedetrician to discuss our NHS options but we may not get seen before Xmas. Tried google for support but noting I can found relates to problem that we have. Any ideas on how to deal with our son. Once he gets upset it takes a lot for him to calm down. He just says that something feel funny and that is enough to set him off p. he has been known to cry for hours- hour and half yesterday.

Sweetiesmum Sat 17-Nov-12 10:55:13

My son is 11, he too has mild aspbergers and is really great socially, but misses the point of jokes at times/takes things quite literally/ functions well with routine/poorly without routine-has horrible temper when not coping with altered routine/frustration of not understanding.
He used to cry after being angry up to an hour and a half also.
Now upset far less often since he takes magnesium (assists in keeping blood sugar even/blood pressure/anxiety/cramps) , fish oil tablets, vitamin C, which have really seemed to help him He has protein at each meal/ additive free food
We found counselling helped greatly too, but diet/supplements also really helped.

Sweetiesmum Sat 17-Nov-12 11:09:09

We also had a patch where he refused to go to school but now we say
"nothing else matters except just getting to school" and
"no matter if you are late/ leave books at home/forget to take homework/jacket/lunch - NONE of that is as important as just getting yourself to school, we can ALWAYS sort it out later," and
" the most important thing is you just get yourself to school- nothing else is as important"
This helped him realise it's OK not to be perfect and to mess up in some way, eg forget homework/forget stuff/not achieve what he anticipated. He has very high unrealistic expectations at times and we work on him being kind to himself and just making it to school. He actually is doing great at maths and art/music

kickassmomma Wed 06-Feb-13 21:05:51

I cannot comment on a personal level as my dd doesn't have as peters however is under two hospitals due to a medical condition. I get no support. I often have to cope alone without much medical supervision I learnt what I need to no from
Google. Eventually I'd had enough. I placed two complaints with Pals the first one highlighted the problems I was having with the doctors the
Second a
Couple of months later re-highlighting
The problems that weren't addressed the first time. I have now asked
For a transfer. Although I have to go out of my way to get to the new hospital I am happy to leave behind those not willing to help. As part of
This process I also changed gp surgeries. Dds new one is much more helpful. Shortly before putting in a transfer one of my Dds care practitioners actually told me "we let you deal with more than you should. We shouldn't really put that much pressure on you it's not fair" but they didn't resolve anything after this revelation. My advice if your not gettin anywhere switch gps switch hospitals and complain, it gets you somewhere good luck smile

Jackgowland2005 Thu 18-Sep-14 22:30:44

Am taking my son to great ormond street after 2 failed tests in Essex makes u very angry and now worried they won't listen also based on what they wrote just want help my son it seems if have a diagnosis one thing it can only be that and want continue outing medication into your child why would any parent want a label got their child?its because as parents we know it is the only way get help them for future I can only try turn this whole situation into a positive and know we are under the best but pray someone helps cxsmile

Bornfree2 Fri 12-Feb-16 06:28:26

Not sure what the zombie bit means ?

Bornfree2 Fri 12-Feb-16 06:40:13

Had a message saying"zombie thread alert',is that because my username is not recognized ?
I had years with pre school dressing battles.Socks were the greatest sensitively, and rough/constrictive fabric, (ie,boys school trousers.)Am I the only one to think that they ARE made of rough,constictive fabric,especially for a young boy who doesn't want to sit still!I used to have dreams B going off relaxed loose,stretchy trousers.What is this tyranny,making our children sit still and conform,from 4 years,upwards.?We are left doubting ourselves if they are struggling with any part of this !

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