Don't know where to turn

countrymusicfan

I have a 23 yo son with Asperger's syndrome. He has a temper and gets constantly teased by the neighbor children because he tends to react. That is part of Asperger's. I am worried that one day he will reach out and punch one of them. That is why I don't work. I had hurt my back 5 years ago and was claiming Incapacity. But now, I have had a medical and they say I must go back to work. Trouble is I am afraid that DS will get himself into trouble if he isn't working and he reacts. He gets DLA but at the lower rate for care and mobility. I can't get Carer's because he only gets low rate DLA and I am scared to get a job because of his problems. Where do I turn?

georgieb_2

This is exactly what I worry about with my son who is 7, his violent outbursts are getting worse etc etc
There is no one that helps to point us in the right direction and noone has the answers as I am sure you are very aware.
Maybe try your local aspergers group or the autism website as a starting block? I am not sure if at his age he would still see someone at the hospital? maybe they could help although I suspect they wouldnt be able to as they are more for 'diagnosis'!!
i do understand but i dont feel I am being any help but bang on any doors you can think of and something may come out of it.
keep me posted
georgie x

dmg24

Hi cmf,

Do you feel that you are fit for work? If not, you would be best advised to appeal the IB decision.

Do you think that your son requires care for a substantial part of the day and/ or night? If so, it may be that his DLA award needs reviewing. I would echo the words of georgieb, a local aspergers group would be a good source of advice and support x

SuziQ

I do sympathise. My 6 year old is atustic and his temper-well as we parents know they have to be seen to be believed! Are you sure low rate care is right consdiering he seems to need supervising more than low care would suggest? At his age and size I would imagine he could actually be quite dangerous if suitably provoked-and kids are notoriously cruel.I think georgies advice is sound re local groups for advice and perhaps CAB to review whether his award is correct? My son is high rate care and low mobility-I appreciate he is much younger.

Conor_3

My son has Aspergers as well. At the moment we're doing OK but only because I've put the fear of god into him so the lines of what is acceptable are well and truly marked. We found that counting down from 5 to 0 when he won't do anything works wonders. So far we've never got to 0 and I've no idea what he thinks would happen if we did.

I used to be an Army instructor donkeys years ago and developed a tone of voice and a certain look which managed to do the job without having to shout a lot which just meant you lost your voice. It's been very useful and he knows that when that comes out, he's doing wrong.

The trouble is I know that as he hits the teenage years, I think that won't really work anymore and I'm hoping that by controlling it now, he won't be as bad in the future.

mummytofour

I have a 7 yr old with ASD and ADHD. His temper is terrible and life is not at all easy.
I feel that you would be very wise to appeal the DLA application.

Is there any anger management courses that your ds could attend? Giving him the tools metaphorically speaking to be able to ignore or respond correctly to difficult situations would be a fantastic skill that would make both your lives easier. Of course I am not familiar with you or your son so maybe thats not an option. It is very hard at time being the parent of a SEN child and I am only at the start of the journey , but these seem to have been the longest 7 years of my life.

SuziQ

Even at age 6 my son's school have trained him to count to 10 when his temper is flairing,we also have a chart we drew with a line,with 1 - 10 written along the bottom. We get him to point to where he is on that line anger-wise!
Both these strategies work really well when I can get to him quickly before his anger really gets out of control,once beyond that point he is like a nuclear missile (though I love him to bits!)

mitchaa

dmg24 wrote: »

Hi cmf,

Do you feel that you are fit for work? If not, you would be best advised to appeal the IB decision.

It appears to me that she is more worried about the safety of her 23yr old son and that's stopping her from wanting to work.

There's nothing wrong with her working after 5yrs on IB, the hurdle here is how does she stop her son doing something stupid?

If you read her post over again, she clearly states she does not want to work solely due to the fact that she wants to protect her son. (3rd line of her post )

She doesn't mention anything about her bad back stopping her from working.

With the new rules soon coming into play anyway she would be deemed fit for work but with certain limitations, if her back problem still persists.

But i'm sure you'll know that DMG Its not what can't you do, it's what can you do

Jo_R_2

I have to agree with getting his DLA award revised. If OP you are so worried and concerned that you do not want to leave him (ie to go to work) then it seems his care needs could be deemed to warrant a higher award than low rate care.

Do you get any help with/for him? Who diagnosed him and do they still see him? I used to work with adults with a learning disability and autism/Aspergers, and even some of those who had a milder condition (the adults I used to work with were 'workready') had contact with various agencies. Some of the adults who had more intensive needs had social workers to deal with their care and day-to-day lives - has DS or the family ever had a social worker? They can help with benefits issues as well as the CAB if you felt this was a road you wanted to persue.

I am sure you have already had contact with the NAS but it may be worth going on their webiste to find out, as georgieb has said, if there are any local groups who can point you in the direction of specialised support/advice groups. I know in my area there is a support group for those with autism/Aspergers and their families and carers, more than likely there is something like that nearby to you who can offer advice on what to do.

countrymusicfan

Thank you, every one. I appreciate it. We do have a social worker who works with David but very very rarely. We have been in touch with NAS, but the local situation is the person who could help him with his temper and/or his temper has been reassigned elsewhere. So no one to help. We did have a psyciatrist to speak to him, but she stopped, so very little help. Will definetly speak to CAB about his DLA but that is chancy as he could loose his DLA all together. I hope I can somewhere that way. His temper is bad, and at times he does really loose control . We were in Glasgow and the bus was 30 minutes late. It came in and we had to wait for the 20 minute break the driver had to have. David started kicking over the rubbish bins. He could have been arrested.

countrymusicfan

Spoke to CAB today. They said the only way DS would get middle DLA would be if he was seriously disabled. If he couldn't get from one end of town to the other one or something like that.

He suggested that I get income support for carers. I called an 0845 number only to be told I was supposed to be calling an 0800 number. After they had kept me waiting 3 minutes. Anyway, she asked me a lot of questions and I have an appointment with a counsellor but can't get one until Sept 1st. She seemed to feel that Income Support for Carers was the way to go.