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My beautiful autistic adult son
emmu
Member Posts: 5 Listener
I just need to offload please. I don't expect help but just to share my story. My son is 24. He was my first child but from the day he was born he was different. He never stopped crying; had a super human energy and hallucinated. My now ex husband and I adored him. He didn't sleep and we took it in turns to walk miles in the night with him. The only things that soothed him were rain and cold wind on his face. For 24 years we have kept all the windows open and had no heating.
He did nothing at school except pass exams with brilliant marks. Repeatedly we went to the doctor to ask for help with no sleep, screaming at night, hallucinations. The doctor fobbed us off. He has cost the NHS nothing. At 16 he was excluded from school because of his disruptive effect. He is gentle, funny and just on another wavelength. He was devasted to lose school and he kept just turning up until they threatened to phone the police.
8 years later I don't know how to cope anymore. My husband left and we divorced. I don't blame him. Our 20 year old daughter has done very well despite the huge amount of energy that was diverted to her brother.
It seems that now he is over 18 the things we could not access when he was a child are much harder to reach.
My GP advised that (because he steals food) he will soon be in the prison system and then he can access help. I could cry forever with the pain of this. He is so lovely and so let down by everyone. I work 2 jobs so I can care for him in the afternoons and support us. We live a challenging life. No holidays or meals out. Very few friends because we don't look at all normal And, with my son's huge craving for protein, I even cook fresh road kill. I know I sound odd. I feel like the path I have walked has made me odd.
Now I am beginning to be afraid. We live on the edge. The house is trashed. My son loses money, phones, clothes. He can't help it. He would like to play football and work. He is not in receipt of any income, benefit or support and gets terrible anxiety and shuts down if we try to engage with the outside world. He is lonely and isolated. Such a clever man. He filled in a form and took out a big loan. The bailiffs come all the time but even they can see there is nothing left of value.
At the risk of sounding like a victim I don't know what to do. I am 54 but look 10 years older. I have not slept more than 3 hours in 24 years. My day job is challenging and i look like hell. When I die I will leave a small asset to my son but who will look after him when he is not even assessed or on the radar? He would just lose the money in a few hours and then be homeless. I often feel like handcuffing myself to the radiator in the GP's surgery and making them listen. Noone listened when we were reasonable. My son has complex needs and no- one would help.
Sorry. I just had to vent.
He did nothing at school except pass exams with brilliant marks. Repeatedly we went to the doctor to ask for help with no sleep, screaming at night, hallucinations. The doctor fobbed us off. He has cost the NHS nothing. At 16 he was excluded from school because of his disruptive effect. He is gentle, funny and just on another wavelength. He was devasted to lose school and he kept just turning up until they threatened to phone the police.
8 years later I don't know how to cope anymore. My husband left and we divorced. I don't blame him. Our 20 year old daughter has done very well despite the huge amount of energy that was diverted to her brother.
It seems that now he is over 18 the things we could not access when he was a child are much harder to reach.
My GP advised that (because he steals food) he will soon be in the prison system and then he can access help. I could cry forever with the pain of this. He is so lovely and so let down by everyone. I work 2 jobs so I can care for him in the afternoons and support us. We live a challenging life. No holidays or meals out. Very few friends because we don't look at all normal And, with my son's huge craving for protein, I even cook fresh road kill. I know I sound odd. I feel like the path I have walked has made me odd.
Now I am beginning to be afraid. We live on the edge. The house is trashed. My son loses money, phones, clothes. He can't help it. He would like to play football and work. He is not in receipt of any income, benefit or support and gets terrible anxiety and shuts down if we try to engage with the outside world. He is lonely and isolated. Such a clever man. He filled in a form and took out a big loan. The bailiffs come all the time but even they can see there is nothing left of value.
At the risk of sounding like a victim I don't know what to do. I am 54 but look 10 years older. I have not slept more than 3 hours in 24 years. My day job is challenging and i look like hell. When I die I will leave a small asset to my son but who will look after him when he is not even assessed or on the radar? He would just lose the money in a few hours and then be homeless. I often feel like handcuffing myself to the radiator in the GP's surgery and making them listen. Noone listened when we were reasonable. My son has complex needs and no- one would help.
Sorry. I just had to vent.
Replies
Disability Gamechanger - 2019
Emotional support for families with a disabled child
Support groups for parents
Managing your stress when caring for your disabled child
Benefits and funding the extra costs of being disabled
Leaving money in a will trust
Support To Work Scheme
Support to Work is an online and telephone support programme for disabled people in England and Wales who are applying for jobs.
Eligibility
Support to Work is open to disabled people who:
16 years or over
Looking for a paid job
Have internet, email and telephone or Skype access
Live in England or Wales
Monday to Thursday 10am-4pm and Friday 9am-3pm
Email: [email protected]
There may be members of our community who have been or are currently experiencing what you are going through. Have a look at our Parents and Carers and Autism message boards.
I really hope these help and we are always here when you need to talk
Disability Gamechanger - 2019
I can totally relate to your 'story' as I am a single male parent of an Autistic child (now aged 28 years) who I raised single handed from aged 9 years until I got quite ill myself 4 years ago. I am now aged 61 years myself. It is true that I had the assistance of my daughter throughout this time, however she is only 2 years older than my son and he requires 24/7 supervision. Perhaps you will agree when I say that we do notice a 'small' change when our children go through adolescence and this is no different for all of us too. My own son for example has learned to monitor his own aggressive behaviour and feelings of anger and he is certainly less 'frightened' than he was as a child, though his condition is complex and unique to him as is so often the case with Autism... I wish I could say that things are easy and help is at hand, but it seems to me that as soon as our children reach 'legal' adult age, they are treated as adults and all that goes with it. Certain areas of support are taken away and the somewhat 'protective wing' that Children Services provided have a detrimental affect once they've been removed. I have always argued, that just because my Son is 28, he is and will always most probably have the mind of child and as such he shouldn't be looked upon as being a 'responsible adult' in terms of the law... Anyway, on a brighter note, I consider my Son my very best friend too, and in my eyes he is the best Son that anybody could wish for. Everybody 'thinks' he's adorable, and I make them correct, BUT, nobody else can possibly imagine the extremities that we as a parent have to quite literally endure like it or not, and the sacrifices that we have to make. Our lives, are totally dictated by the care needs of our children and everything else takes second place and sometimes there is no second place to be had. We have no other option but to deal with 'everything' ourselves and by ourselves, as you have correctly stated. This is the stark reality, unfortunately, and it is difficult for any other person to truly understand how soul destroying it can make us feel .
I am so so sorry to hear of all the troubles that you have been through. You obviously love your son very much and no one should have to go through what you have. The system has truly let you down.
Surely your son should be entitled to benefits of some kind. I am sure you have already tried everything but why not ring the scope helpline for some advice. They may be able to point you in the right direction for some help with benefits or your housing or even support in some way. 0808 800 3333.
As I said you may have already done this but if you haven't it's worth a try. You never know what they may come up with in guiding you to the right people.
Again, I am sorry I cannot be of more help. I really hope that something happens for you soon to make life a little easier.
Take care,
Beverley
Parent Advisor
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My sympathy