I’m new here. I care for my disabled son, he is autistic and at the severe end of the spectrum. Because of his challenging behaviour, size and strength it’s becoming impossible to go out and I’m feeling very low and isolated. I suppose I came here looking for others like me, there’s no solution and it feels so hopeless during school holidays, but I’d like to be able to chat to those in similar situations.
Hi Maria,
My own son has severe learning difficulties, now 40.
Can I ask how old is your son? Still at school?
When did he last have a Needs Assessment from Social Services, and you, a Carers Assessment?
Has anyone suggested that he might be entitled to free NHS Continuing Healthcare?
What are your long term plans for him?
Up to this point we were coping very well with him at home, I was hopeful we could keep him at home for as long as possible.
He is 8yrs old now. Had a carers assessment a couple years ago, they funded a trampoline rather than the suggested weekend at Butlins, (not something doable with my son). 3yrs ago social services said we could have one hour a week respite which I turned down, but I’m going to give in and contact them again. One hour a week seemed pointless at the time, but since then I’ve learned you can bank the hours. If we can find the right person to look after him I’ll agree to it, such a difficult thing to trust though.
One hour a week? That’s pathetic, not even enough to go to town and have a coffee! Does he have a written assessment of his needs? Highest disability living allowance, care and mobility?
Special school or mainstream?
Maria
Does your son go to residential school and home at the holidays or is he at a day school?
I have a lot of challenges with one autistic son…although on the face of it he is not on the severe end if the spectrum his autism and other difficulties can severely affect his day to day functioning.
I also have another younger son with learning disabilities.
My oldest is 24 now and due to move to supported living.
As a breath of fresh air for you all.
I was diagnosis as early been born with a developmental delay, 3 years old with moderate intellectual delay, speech and language delay, significant global learning difficulties, childhood emotional difficulties/disturbance, then later on in life DSM-5 Scale Level 2 Autism (substantial support).
I had emotional disturbance throughout my life and i did not manage to contorl it until afer my wife passed away who was my full time carer and had needs of her own, the shock of seeing her dying and having to hold it together unforunatly was the biggest key to managing emotions.
Bu that dont mean my learning difficulties or speech and language impairment or Autism has improved, but rather managed and i am still searching how to understand my conditions. Specialist counselling helped me, someone who knew Autism etc and specialises in it. it works for alot of people with autism or learning difficulties etc
But just because we happen to be severe, dont mean we dont understand whats happening, were trying to get you to understand but its hard for us to explain to you because Autism is about communication most of it, and the condition prevents us from either saying it physically were we are non verbal, temporary or permanent or we struggle to get the right words at the right time, or asking you exactly what we want precisely.
Its the way we communicate, if you start to see, then you can sit down, relax, and ask him.
Give him a picture, write things down on notes then ask him to point what he wants. its that simple.
The old saying i always get from ignorant people, ’ well i dont think you do have it’ it took me 30 years to be able to get to were i am now.
Peace
Hello Andrew welcome to the forum
I’m sorry you lost your wife, that must have been difficult for you. I’m glad you’re able to get help. I’m sure many on here can relate to what you’re dealing with and will be along to chat.
Best wishes
Jane