adult children with learning disabilities.

I don't have your experience PRINTMISS but I would still be interested to join in a discussion. We have a 17 year old distant relative who was brain-damaged as an infant at the same time as her MMR injection (no other explanation has been identified), when she contracted a cerebral infection. She is wheelchair-bound and unable to speak. She has many convulsions every day and will never live independently. Her parents are fearful about the future, because the sheer physical effort of moving her and dealing with her poor health means that she would need full-time care if they weren't around.

PRINTMISS, I do not have personal 'family' experience of knowing adult children with learning difficulties, but I have worked with people who have these 'difficulties' for most of my working life, and have recognised and empathised/sympathised with their parents.

Print miss, I have a 31 year old son with severe learning difficulties .He is very happily settled in a community, he will never be able to live independently. I have a lot of worries for his future in the current political climate.

When I wrote the introduction, I wondered if anyone would take an interest, and thought perhaps there would be those who were concerned about their relative(s) who would consider it worth while.
I don't have any answers, of course for those people who care and worry about the future of their children. We can only hope that what we have provided for them will see them through their life as happy as it is possible for them to be. Our son has lived in his 'community' for 38 years now, and the organisation which cares for him (and us) are constantly altering their views and striving for better for him, hence his ability to live 'independently'. He does not talk and cannot write, so communication is a real problem. He is not interested in clothes and hates shopping - mention football or cricket and that is another matter! We have recently become concerned about a funeral for him, when he dies, and suggested a funeral plan; the people who care for him have carefully gone through this - he knows people die and there is a service, one or two of his friends in his community have died and there has been counselling. I would not know how to discuss this matter with our son, too close, but evidently he has chosen to be buried, definite about that, all done with sign language. A choice of music/hymns will be beyond him, but I hope that I will be included in this, as I am sure I shall be if I ask. The next item on the agenda is a will!!!!! We only manage because our son is taken care of for us; something we organised early on in his life. I have total admiration for those parents who care so lovingly for their sons/daughters at home, and appreciate their worry about what happens if they are no longer here to care - even I do that, in spite of my total confidence in the organisation which cares for our son. Oops, gone on a bit there.

No, you haven't gone on a bit at all PRINTMISS. I was very interested to hear how you have been approaching these different issues which many of us don't ever think about.

How do you yourselves communicate with your son? Do you make gestures and use pictures, pointing, signing? Have you learned to sign? He sounds like he can express himself if he has made a choice about burial.

It's great to hear that he has his own passions in sport, and the organisation he is cared for by sounds tuned in to what he needs.

My distant relative loves going to a specialist centre each day, but will have to finish soon as she will be 18 in the summer. Her parents are worried sick about her being dumped somewhere in the daytime, as she has had excellent support, including good nursing care, which gives them a little respite, and is a great outlet for her energy. They still haven't learned what is available next for her, and in 3 months she will stop going.

Thanks for the encouragement - I do not need a lot! I do so empathise with your relative, the worry that comes with change, and the concern that someone will be just left to 'vegetate'. Our son has never had something to do every day of the week. He has had occasional forays into attending the community college, where he was one of a group trying to learn the basics of living - money, food, etc., but there is such a demand on these places that unless there are signs of definite understanding and improvement, then the place has to be given to someone else. Quite rightly so as well, time and money should be spent on those most able to benefit from it. At the moment he just goes to an art class one afternoon a week, actually just sploshes paint around and enjoys the company. Horse riding he loves, I think perhaps the young ladies who help as much as the horses, but lessons for that are a bit erratic and depend on the availability of the horses and volunteer staff. Very special needs, as required by your relative are of course a different matter, and what is available does, I would imagine depend very much on where one lives. I should be interested to know what happens.
With regard to our sons communication - well, it is a bit individual, I think. I am renowned for using my hands when talking - in fact without them I would probably be dumb (as well as hard of hearing!), and although Robert does not sign as such he does have some very definite hand signals (one or two I would rather he did not have), and his face will tell you a great deal. All that is very limited of course, but we have learned that if we stand and speak to him quietly and get the nod or shake of head then we can progress from there. Asking him of he wants this or that, is easy, left hand/right hand. If we go out for a meal we read the menu, and he decides what he would like, cheese and biscuits being his favourite after a meal. When he was at the weekly boarding school, the teacher there started sending home a note every weekend as to what he had been doing, we in turn sent a note back about the weekend. When he was sixteen and went into community care, we continued this, and it eventually became a diary. We bought him a large one for his birthday (born Christmas eve), and it became the thing to do. He has of course never been able to ask for something he would like, it is very much guess-work, but when we were sitting down one time writing his diary I asked him what he would like for his birthday, he closed the diary and put his hand on it - I almost wept! Going on again - perhaps I should write a book. Have a good weekend.

You so remind me of next door neighbours we had many years ago - their adult son had learning disabilities but was able to speak a little and we discovered he had a wonderful sense of humour, but it took him some real effort to time what he wanted to articulate, otherwise he missed the moment - it took such patience to enable him to get his point across. One memorable time, he sat listening to us chatting across the garden hedge about a barbeque we had shared, then during a gap in the conversation, he announced - you all got 'eggless' - we were stunned, then fell about laughing with him, and crying at the same time at his success in getting his joke in. He had lots of hobbies, and loved pop music, so he learned to burn CDs with his dad's help, to give to my son, who was the same age. It was so poignant the day my son got his first car, when he came to the front gate and said he wanted to get a car, too. He eventually went to live independently of his parents, with a live-in carer.

Good morning, I thought I had replied to your post, but I think I must have 'pre-viewed' my thoughts, and then clicked the wrong button, typical! I think everyone with a disabled child/relative is deeply concerned at the cut-backs being made. My daughter over-sees her brothers money - she cannot access his account and spend his money, but she does know what goes in and out. She has just been confronted with two very large questionnaires from the government department involved. Some of the questions are totally irrelevant to his case, but what is obviously happening is they (the government) is trying to ensure that those who can work do so - provided of course there is work for them to do. The idea is a lovely one, but not only finding work for themproves difficult, but finding someone who will be responsible for them whilst working is another stumbling block. Not everyone wants to be making sure someone else is doing their job safely which again, with health and safety is another consideration. I think those people who live away from home either in community care, or with independent living might be best protected, although nothing is for sure. I am so glad your son is happy in his community, so many of them are, and able to have their own friends and do their own thing.

That's worth knowing about, Geraldine. I've just passed this on to a couple of friends.

I saw part of a programme in the early hours of this morning called 'Letting Go' about a mother's fears for her daughter who has Downs Syndrome. What I saw of it was interesting and profoundly moving.

Rosa Monckton, who was a friend of Princess Diana, has been in a few programmes lately, with her lovely daughter who has Downs Syndrome. Her daughter has been accepted for the Chickenshed theatre company, which integrates young people who are able-bodied and those who have learning disabilities to learn theatre art and dance, and put on productions. She looks talented and was thrilled to bits when she passed her interview. I wonder if this was one of those programmes you saw crimson? She has cropped up several times in the last couple of weeks.

Yes, that's the one, Carol. Her daughter is adorable. I was at an art exhibition recently and started talking to a lady next to me and her daughter who had Downs Syndrome; the daughter was a delight and had such a wonderful sense of humour...I really wanted to ask, in the way a child can but an adult can't, if they would 'be my friend'.

Thanks for that Geraldine, I shall certainly check that out, although we do have quite a lot of contact with our son and the folk who care for him. His carers are very good and include us in everything they can, we have also been invited to attend area meetings about the organisation in general.
I ran a 'gateway' club (a special needs club) for many years Carol, and very much enjoyed the company of these people. I love music, and that was very much part of the club life, so much so that we ventured forth and put on a Christmas show for parents one year, which eventually led to us producing three individual shows over about 6 years, in the Studio at the local Theatre. The audience of about 100, was of course mainly friends and relatives, but our members enjoyed it so much. Despite exhausting rehearsals we never quite knew what was going to happen on the night! Great fun, and I miss this very much, but I had come to the end of any new ideas and we moved away. What memories though.

Here is Rosa Monckton's petition for funding for adults with learning disabilities to be ring-fenced, if you would like to sign it.

https://submissions.epetitions.direct.gov.uk/petitions/31475/signature/new

Thanks for that Carol. I am so grateful that my son is totally unaware that there are threats to his funding and a way of life he loves. It struck me today that if he is not allowed a vote because of the severity of his learning difficulties it is totally unreasonable to expect him to hold down a job in the wider community. He does work a 40 hour week in his wonderful protected community.

In our extended family we have two adults aged 40+ who both have some learning difficulties and also very severe mental health issues, but, with family support, have managed to maintain independent lives. My (truly saintly) in-laws, who have looked after them since they were toddlers, are in their mid 70s and we are now having to think about what will happen when they're no longer here. There are so many issues to think of, not least that although we regard these young men as family, they are in fact not blood relatives. The mental health problem means that all communication is fraught and their learning difficulties means that they are unable to grasp complex ideas or situations. My in-laws are desperately worried that their decision to care for these boys many years ago has had a detrimental impact on the family and that the legacy of their ongoing care will fall upon me (and my husband to a lesser extent). Which it will. These young men are difficult, self centred, intractable, ungrateful and ungracious - and yet....... I remember them when they were young teenagers full of enthusiasm about their various ventures and hobbies, were always the first into the kitchen to wash up after a family 'do' and joked and played with my children, to whom they were brilliant 'uncles'. I hope that, when the time comes, I will be able to care for them by remembering the people they once were before mental illness claimed them.

There are so many caring people who are looking after adults with learning disabilities, and we have a social services and mental health system that should complement family arrangements that work. The system gets overhauled every now and again in the best interests of the person who needs to use the service, yet all it seems to do is allow vast numbers of needy people to fall between two stools. They can either be left to struggle in the community or be institutionalised when, with some proper support, they could be enabled to continue with the life and lifestyle that has worked for them until the authorities reviewed their situation. It seems scarce resources will always override self-actualisation for adults with 'not enough' learning disability to go into a home, or 'too much' ability to need support to live in their own home. It would be good to see individuals supported according to their specific and changing needs.

I have distant relatives with a 48 year old son who has Downs Syndrome. He lives in the house next door to his parents, who are in their 80's. He shops for them and their small village is familiar and secure for him. They take care of his finances, laundering of clothes and bedding, some meals and house maintenance. When they die, it's hoped he will be able to stay in his own home with some support. It would be tragic if he was wrenched away from all he knows and understands.

yet all it seems to do is allow vast numbers of needy people to fall between two stools
Carol that's exactly where we are right now. We have a situation where a severely mentally ill person (with learning difficulties) cannot receive a service from the mental health team because he hasn't asked for it. (He's well known to the team and no-one disputes that he's ill.) He suffers from paranoid schizophrenia and doesn't believe that he's ill, rather he thinks that people, including his carers, are plotting against him. Because his carers are not related by blood (foster carers for forty years) and anyway there is no right to be heard even if they were, we have no 'voice' in this situation. Aaaaargh!!

I bet there's someone on here that can offer some sensible avice on how to navigate the system to his advantage ga

Carol I wish it were so, but my father in law provides training for mental health workers so we do have a thorough understanding of the system. It just doesn't work! If ever I were to utter a swear word I think this is what would drive me to it.

Oh, I'm so sorry ga. That must be maddening. Does this latest epetition go any way to getting the issue addressed at government level, or is it something that needs an airing as a separate matter that needs resolving?

Funding is always a problem, but no, that's not the issue here. I often feel as if I've fallen down the rabbit hole! The short story is that to access mental health services he needs to visit his GP and get a referral. He is retreating into a world inhabited by voices, is paranoid that people are plotting to harm him and trusts no-one, not even those of us that have cared for him through thick and thin. His recent behaviour has been aggressive (he's genuinely afraid all the time, so aggression is understandable given his mindset) and he is beginning to act in ways that cause strangers to give him a wide berth. There is no way that he will visit his GP because he doesn't believe he's ill. MH professionals won't intervene without a referral unless he's a danger to himself or others; the measure of this is obviously AFTER he's caused harm. Aaaargh!!

Yes, I know what you mean ga. When I was still working, we had a friendly GP attached to our probation hostel and he welcomed us passing on our concerns, as we could see a downward trend in someone's wellbeing, and this included some people who also had mild learning disability, who would struggle to advocate for themselves. It's rotten that you and they have to wait for someone to be sectioned or refer themselves for treatment. I do hope you can get some help for him, or that things settle back down. Can MIND offer any suggestions, or the local CMHT and Learning Disability Teams?