Worrying about my son all the time

Hi my name is Shelley and I have a 21 year old son with Aspergers. He was also recently diagnosed with ADD and dyspraxia. I've just read a couple of posts and the issues he has are very similar, with the depression and struggle to talk to people. He has no motivation and has been unemployed for just over a year. He started voluntary work in an old people's sheltered accommodation building last week and so far it's going okay. He's been getting middle rate DLA since before his diagnosis, for about nineteen years now. Then recently I put in a new claim and it has been downgraded to low rate so I will lose my carer's allowance, meaning I have to claim Jobseekers allowance. We are going to lose about £350 a month overall so now have a housing issue as we live in private rented accommodation.I am looking for a job but I really don't know how he will cope with being alone so much - I still need to make him get up, eat breakfast, do his hair for him, be there if he has any panics about anything. And I am also worrying that if we have to leave the house and end up in temporary accommodation we will have to share a toilet with other families, he has a lot of issues around using the toilet.I've been advised to appeal the DLA decision which I will do but it's not just about that, I wanted to come on here because sometimes I feel so isolated and I am constantly worried about my son's future. It's just that this issue has made me realise that everything I worry about is to do with him, he's so unhappy most of the time despite being on Fluexotine and I worry that anything that happens to him will make him worse.

Sorry that my introduction just sounds like a problem but then I guess that's what this forum is for. Be nice to read some more posts and maybe in return I can help others.

Parents
  • Hello Shelley,

     

    My name's Alex and I'm a mum to a 14yr old boy with Asperger's syndrome.

    Your story is so sad. I can understand why you worry about your son, I worry all the time too! Sometimes it consumes your whole life doesn't it?

    I too get middle rate DLA and although I work, I don't earn much, so I rely on it pretty heavily. It must have put a big dent in your finances being taken down to the lower rate. The knock on effect it has on your housing sounds totally stressful. I seriously think you should fight this all the way. Put it in plain black and white what affect it will have on your son (and your own mental health) if you are forced to move. It is totally unacceptable in my eyes. You could even get advice from CAB or see if your local MP runs advice sessions and they might be able to back you up? Be strong and fight.

    Remember something though; parents like us go through so much with our children and I truly believe it puts us in a league of our own!

    Sending you lots of strength and a big pat on the back for all you've coped with so far.xxSmile

Reply
  • Hello Shelley,

     

    My name's Alex and I'm a mum to a 14yr old boy with Asperger's syndrome.

    Your story is so sad. I can understand why you worry about your son, I worry all the time too! Sometimes it consumes your whole life doesn't it?

    I too get middle rate DLA and although I work, I don't earn much, so I rely on it pretty heavily. It must have put a big dent in your finances being taken down to the lower rate. The knock on effect it has on your housing sounds totally stressful. I seriously think you should fight this all the way. Put it in plain black and white what affect it will have on your son (and your own mental health) if you are forced to move. It is totally unacceptable in my eyes. You could even get advice from CAB or see if your local MP runs advice sessions and they might be able to back you up? Be strong and fight.

    Remember something though; parents like us go through so much with our children and I truly believe it puts us in a league of our own!

    Sending you lots of strength and a big pat on the back for all you've coped with so far.xxSmile

Children
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