How do you manage and regulate your own stress and emotions when you are so exhusted from dealing with an autistic adult child.
Welcome to the forum.
Are you currently getting any support from Social Services?
What plans have you made for the child’s future when you can no longer care?
I have asked for help, social services are very slow as of yet everything is processing, I am not sure what they can offer. I suppose if I couldn’t care for him he would have to go into residential care.
How old is he?
My son is 43, brain damaged at birth, has his own flat with carer support, day services too. He comes home regularly. Shared care like this is so much easier.
He is almost 18, he has trouble sleeping, keeps waking up and having meltdowns during the night, he has recently started taking Promethazine but some days its not working. I don’t know why.
I am not sure if my son could live in a flat on his own, even with carer support he is partially Sighted and has to take medications for a metabolic disorder, autism is just a part of his difficulties. I be honest I never thought he make it this far . I am happy he has but at the same time I feel I have aged past my years, and I am losing the energy to care for him as I would like to. How do people manage.
There are a variety of options available. My son needed lots of support at 18, but then little by little became mor independent. 3 years at a farm college which he loved, a residential home in Cranborne Chase, then supported living. A friend told me to keep him in education as long as possible. Between 16 and 30 he developed hugely. Not living with me (health problems mean I can’t care for him full time) means he does more for himself. 18 years ago I had major cancer surgery, 18 months later my husband died suddenly of a heart attack, and 3 months later I was nearly killed in a car accident! None of us live forever and we need to help our children to live without us one day. Is your son still at school?
What are Social Services offering?
He is still at school, recently he has been struggling to go in. Its so sad parents have to go through all this. I just want him to be easier to manage, and me too have somewhat of a life… many times life seems very isolating and health professionals often don’t understand. At the start of the year he was very bad , wasn’t sleeping eating and was hitting himself so much in his meltdowns, I took him to hospital and they said I was the one who had the problem with coping, not him as they assumed this was his baseline. Saddens me parents get treated like this. None of the doctors knew what to do, at the end they made referrals to mental health and social services and sent us home.
In Hampshire the Health LD Team now have a special team for challenging behaviour.
Are there any plans being made for where he will go after school has finished?
Ifyoy Google NATSPEC you will find some specialist colleges.
Your LA won’t tell you about them!
My son went to Fairfield Opportunity Farm near Warminster which was wonderful for him.
There are several Facebook groups that might help and support you.
Parents for adults with additional needs is one I belong to.
Is he getting all the benefits he is entitled to?
Thank you, I will look into NATSPEC, as I haven’t ever heard of these colleges. I know local colleges in my area do have specialist sections for students with disabilities and learning difficulties I am finding the transition into adult care and education much more daunting and challenging then dealing with a young child. Supppse lockdowns have slowed and made the whole process more difficult. Never saw myself feeling like this, or being in this situation, however when I read about other peoples situation, like yrslef I feel comfort in the fact that I am not alone, however I do wish no one had to go through such challenges and pain.
You and your son have been very let down, but unfortunately this is common for those with LD and autism.
Has he been checked for physical causes e.g tooth problems, hay fever, epilepsy, constipation and acid reflux? These all can affect behaviour, anxiety levels and sleep.
Self harm is never normal for someone and shouldn’t be ignored. The trigger could be physical, environmental or psychological etc
Does he get enough exercise? Hormones cause mayhem at the age and exercise helps with regulation.
How is he coping once in school? Is it a special school that goes up to 19?
The Challenging Behaviour website has useful information https://www.challengingbehaviour.org.uk/
Also, ask the GP to refer him for a sensory assessment (must be specific) with an OT.
Roxana, I never had any help either!
Too many people seem to think that those with LD behave like those with Down’s Syndrome, and can’t understand how my son is part 3 year old, part 43 year old, due to his brain damage. He can’t read, write, or do any maths but can light up and drive our 10 ton steam roller! He can do some things easily, sometimes, not others.
A friend was brain damaged in an accident, and he told me that he was the same, his capability fluctuated.
Officials seem to constantly want to put a round peg in a square hole!!
There have been a lot of changes in the past few years that have amplified all his challenging behaviour. He does attend a special needs school, he really liked a girl, who in his mind one day he was going to marry and move in with. He doesn’t understand his limitations and condition and the girl who has down didn’t either. Last September his friend left the school. This made him feel heart broken. His dad also remarried not so long after my divorce finalised. She doesn’t speak English and is pregnant. All these changes have been too much for my son. He had bloods taken for everything else and although he has a metabolic condition everything in that regards was found to be stable. He is on promethazine and sertraline. How ever any change of routine throws him completely of balance, he stops sleeping, gets very anxious and doesn’t stop repeating the same sentences.
I take him on long walks and try to keep him as busy as I can. I feel its taking all my energy to keep him going and somewhat functional. I have two other teenagers, I feel like I am neglecting them. Sometime im life I suppose you can’t get it right no matter what you do. There’s always the guilt with whatever I do. Even though I am trying my best.
A lot of changes then for you both, on top of Covid too.
Does he ever stay with his Dad or could his Dad stay at yours so you and the other two teens could have a few days away?
The sleep problems could be a side effect of the Sertraline. He maybe getting used to the Promethazine and so it’s becoming less effective?
I do understand how tiring it is as I care for S who has autism, related LD and health issues. He needs a lot of attention to keep him regulated and that doesn’t leave much time for me. Its harder to give support m when shattered yourself.