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Living on the edge – the future is terrifying - Carers UK Forum

Living on the edge – the future is terrifying

For issues specific to autism / Asperger Syndrome.
I have been sent this and asked Sue for her permission to post it here too. I am sure many of the points she raises will be familiar with some members here.
It’s complicated! How to explain, in as few sentences as possible, how difficult life can get when dealing with a terrified and distressed child on the autistic spectrum. Add into the mix struggles to get a diagnosis due to the autism assessment service being on over load. Add ongoing battles and struggles with education to get adequate provision which they resist due to lack of resources. Add constant assessments to try to obtain additional support from social services (in my case this took until my son was 17!). Add being a full time carer, alone and living on benefits which barely cover the bills.

Autism is a difficult and anti social disability. I am focusing on how it affects my son and not necessarily how it affects others. Two people in a room is a crowd. Any background noise leads to melt downs and tantrums as this distracts from the task in hand and causes huge frustration. There can be no quiet conversation if this child is trying to complete a model or read some instructions and such. No TV, no radio playing. Communications are impaired and I always try to explain to people that it is as though speaking is not my sons first language. I became sensitised and alert to any subtle changes in his behaviour in order to divert possible meltdowns. A person learns to live on edge ——— always at the ready. Always with one ear tuned in to where he is in the house and what he is doing.

Visitors are welcome by me but not by him. I walk the tight rope of having a coffee with a friend and pushing him too far. He speaks his mind. The thought enters and is on his lips with no process of being able to prevent it. But mostly he “acts out”. This means that an upset of which I am not even aware sets him to throwing everything in his bedroom crashing down the stairs. He’s in the zone. No point at all trying to stop him. It needs to run it’s course then he will reach a point where he can hear my words again. Sometimes he just hides some where and screams ——- under a table or locked in the bathroom. At 8 or 9 years old the anger and frustration is directed against me ——– kicking, punching and throwing things. Even waving a carving knife in my face one day. They were well hidden after that.

He begins to restrict his diet and this escalates to a point where he survives on water and very little else. Food is a problem because of noise, the phone ringing, the doorbell ringing, a Halloween mask he saw months ago, the smell, taste, texture and the favourite, “there’s fluff on it!”

He develops some medical problems and various encounters with hospitals and clinics produce a shaking, screaming and sobbing child, curled in a tight ball under his blanket. At 14 he draws his own line and refuses to ever see anyone “medical” or visit any medical establishment again. By now he is almost 6′ tall ———– not a lad I can easily man handle and force to do anything. Due to “starvation” the medical issues are increasing though but still he will not see a Dr.

The house becomes filled with home made posters from when he is aged 8 onwards. “In Our Family We Do Not Hit Each Other!” With photos and pictures to demonstrate the “rule” pictorially as well. “In Our Family We Do Not Shout And Swear!” I develop a card system to avoid language sometimes ——— green = ok, yellow = you are on a warning, and red = go to your room. I have star charts for almost everything you can imagine —— teeth brushing and even getting out of the car nicely when we arrive at school. How many times did he have to be coaxed out from under the car or from off the roof! Month after month I had to spend in school with him.

Clothes become more and more of an issue. He cries shouts and screams due to labels, itching and rubbing. He refuses to wear shoes and socks. He refuses to remove his coat with hood as he hates people looking at him. He runs when upset and has to be chased and found, or he curls into a tight hedgehog ball, in the middle of the street, on the floor of a shop, in the corner of the bus shelter when too many people arrive. he becomes terrified of dogs and of teenagers.

Going out at all with no other adult to help me becomes impossible. Having guests to our home becomes almost impossible and has to be done with a strict understanding that at any moment I may have to ask people to leave. His second school placement fails after it took me 2 years of battling to get it. He ends up permanently at home at age 13. I have to leave him locked in the house in order to shop and to collect my younger son from school and such. All the while terrified of what may be happening at home.

The impossibility of coping alone, huge money problems and my own deteriorating mental and physical health (for which I simply did not have the time or energy to sort out) made the prospect of living with my elderly parents and caring for them seem like a good one. Sharing the bills would help me financially. Having adults available (even if disabled themselves) would allow me to have some small amount of freedom ——– I could visit a Dr or shop without fear of what is happening at home.

So here I am. Now caring for my son who is still not able to attend any school and caring for my dad who has become very ill since I moved in. Relationships? My sons dad left me when our youngest was 3 (he is now 14) as he could not cope with my oldest sons behaviour. It was the source of many arguments and financially it was a strain as I could not work. I have been alone for 11 years. I have accumulated 5 huge folders of paperwork re my son. I have attended hundreds of meetings. I’ve planned for at least three tribunals which have then been cancelled at the 11th hour. I’ve had my parenting criticised and been blamed for my sons behaviour. I’ve been reported to the housing association by neighbours feeling that my son was “out of control”. I’ve had to be interviewed and questioned. I’ve been bullied, harassed and isolated. I’ve been depressed and suicidal.

My son was born in 1993 and I, apparently, was lucky enough to experience the good years as far as services are concerned! How much worse are things about to get? I at least had DLA which helped me considerably and enabled me to pay household bills. In my situation it never was spent on “extras” for my son. I at least was not compelled to work until my youngest was 12. By then my oldest had a diagnosis and I was his “carer”. But my son did not get a diagnosis until he was 9 and my youngest was 6 so todays rules would mean that I would have been compelled to work prior to the diagnosis. That simply wouldn’t have been possible so what would I have done? I was lucky enough to have all my rent paid and all of my council tax. This may not be the case in a few years when the new rules come into effect. I was able at least to get a statement for my son which meant that the local education authority were legally bound to abide by it. Now I read that this govt are intending to review the whole system of special educational needs and very possibly remove the statementing process.

So I was “lucky” until now but of course the future is a whole different thing. With our welfare state being dismantled and services devastated I fear for my sons future. Pretty soon he will have to be assessed for fitness to work by the private company ATOS healthcare. From what I read I have no confidence that he will be allocated to the support group. I know he will not cope mentally with any “work activity”. The future is terrifying so I try to simply not think about it yet. Not the best plan I know but until the country wakes up to what this government is doing it is the best I can come up with to keep me sane.
My God, I understand just how frightened Sue is... I really do.. Image

Thank you so much for the window into Sues life. My friend has a son with a diagnosis similar to hers sons, I never knew how hard things were for her. Her husband stayed, although it was touch and go at times. He never seemed to have faith in his sons diagnosis.
Thought he just needed discipline.
My heart goes out to Sue and her family.
Words fail me.