Any parents of disabled young adults?

[YogaLite]

How do/did u cope with Christmas?

I held it together just about until now but the constant grief, sadness and regret seeing him struggle with presents for a much younger age is killing me. He is in bed now and my tears are flowing freely.
Apparently it's good to cry to get some chemicals out of the system but Christmas is a complete agony.

I could give him so much more but he will never use or understand any of it due to his progressive physical and neurological condition.

I hate Christmas, anyone in similar position, how do u cope? Surely I can't be the only one??

My brother suffered a brain injury aged 10. He was in a coma for six weeks and had to learn to walk and talk from scratch.

He still lives with my 80+ year old father.

I once spoke socially with somebody that works for mencap. She told me that it is very common for parents/children to form unhealthy codependent relationships - the parent wants to help their child, see it as their responsibility and get to feel needed. The child resents living at home, when their peers/siblings move on in life, but knows they've actually got care they'd never receive elsewhere.

My brother should have moved into some form of assisted/sheltered accommodation decades ago, but he still lives at home making my father's life a misery.

My brother is in his forties and extremely hard work. He's basically very autistic and completely lacking in social skills/niceties. He's incapable of holding a normal conversation. Instead it's a relentless series of questions about things/people that nobody else is interested in. He's not interested in watching TV, listening to music, etc. He just wants to be entertained by 'social interaction' with aquaintences, but of course that's impossible because he's such hard work nobody has the time, patience it inclination. He's basically that weirdo on the bus that starts talking to strangers who clearly just want to be left alone. My poor father has to put up with all the resentment, tantrums and unrealistic expectations.

I don't think he'll ever be happy because he just doesn't fit in and resents being categorised with other severely SEN adults. He also has no common interests, so a group home probably wouldn't work.

My DD has 1:1 support, in her own 2 bedroomed house - the care is 24/7 with a person sleeping over - all local authority. There are a number of specific reasons why she cannot share (both for her and others). Overall it works. We had to fight, you have to fight for everything. But we are now her parents rather than carers. It works for us - it might not work for others. It's good to vent, especially after a difficult Christmas but I think some of the comments on this thread about paid carers, specialist boarding schools (a scare resource) are unfair. Our young adults deserve better than being stuck at home and we (parents and siblings) deserve more too.

I experience both sides of the coin.
DS is 28 and lives at home with us by choice. He has cerebral palsy. He boarded at school for a couple of years and hated it. Although he has passions and hobbies in life, most of his friendships are online and I know he often feels lonely. We are able to have a meaningful discussion with him about his current and future life, but he wishes to remain in the family home. We get very little support from social services. And that impacts greatly on my life, especially as I get older. I work nights and juggle trying to do as much as I can to get DS out and about.
I work at a supporting living setting for adults with learning disabilities and we have a wide range of people we support. The house is in the countryside and is owned and run by a charity although most of our residents are LA funded. They all have individual plans based on what they communicate to us they would like to do, some go out everyday, some very rarely. Some hang out a lot in our shared spaces, some prefer to watch their own programmes in the privacy of their rooms. They have a lot of choice in diet/personal care/daily life etc. The amount of paperwork and the checks in place to ensure that each of our residents is living a safe, healthy and fulfilling (on whatever level) life is astounding.

@MsDianeBarry To be honest @YogaLite I have noticed that you ignore any practical suggestions and seem determined that nothing is going to work for you and your son. I have a very high needs daughter myself and do understand the many many difficulties. I think this is so very unfair. Surely you must be aware that many many practical suggestions don’t works for an individual and that for some it’s perfectly possible that nothing is going to work. You fought hard for your own child what if what she needed wasn’t available neatly from the LA however much you “fought”?

I find the idea that those coping at home are just not putting in enough effort, or have “unhealthy” relationships with their adult children really rude. This isn’t some bf versus bottle, or day versus boarding vile pile in. Most people are doing their absolute best in really unusual and challenging situations and one model outcome DOES NOT fit all. It reminds me of those tedious people who said things like “well he’ll have to be out of nappies before reception”, NO actually, however inconvenient the disability just demanding that it must be overcome is ludicrous.

I too like @YogaLite am really interested in what people have found worked for their families. It really is the norm now for adults to live with their parents far far longer than my generation did. In some cultures it is the norm to live in multigenerational homes always. This shaming of those who stay at home needs to stop. Not least because it’s highly unlikely the country can afford for families not to do the majority of care going forward.

@YogaLite

At dsd's place there are 4 residents, 2 have 1:1 for 16 hours per day (and 1:2 overnight, the other 2 residents are in supervised living with a set number of 1:1 hours per week (they have their own door keys and work in voluntary work) there's 3 staff on site during the day and 2 for the overnight shift, one sleep in one awake.

Because the carers are part of a wider network of 5 houses, in emergency staff can be sent between homes.

Hi everyone, just wanted to say well done for getting through Xmas Day. My DD had a meltdown Christmas Eve night which meant no-one got any sleep until 2am and I've had to leave a social event with her today as she started playing up. She loves the run up to Christmas but Christmas itself is a combo of overwhelming and underwhelming that a PP mentioned.
Solidarity to you all.

@Itisbetter How on earth do you get such a long rant from my post. People offered suggestions, their points of view to the OP but she initially only engaged with those posters criticising supported living, care workers.... MN is surely a place for discussion. I never said one model should fit all - what an odd idea. Where is the shaming on this thread? It seems you do not think families should use support services - like elaborate on that?

Just a shout out to congratulate you all for being amazing super parents. I'm now relaxing with dp as dsd is back with her carers - don't know how you do it full time (If it came to it I would but even for 3 days it's so intense.)

@Itisbetter - should not rather than 'should'

@MsDianeBarry When u say your DD lives in her own house, are her carers funded by social services?

I knew a lady who was trying to negotiate with SS to support her son in her other flat or even sign it over to her disabled son but was told that if he owns a property he wouldn't qualify for social care. I don't know what happened in the end as my ds stopped attending the club which her ds also attended.

@MsDianeBarry its not “a rant” it’s a response to your post. I can’t fathom the should/should not question. I think people should receive the care and support that is appropriate to them. Does that help? Those using residential care and those caring within the home are NOT enemies.

Sending you love and understanding, OP

The decision with regard to what will happen to my DS as he reaches adulthood fills me with dread. He is currently a young teen on the autistic spectrum with learning disabilities and very high anxiety. The only time he is relaxed and ‘himself’ is at home with us. He is unable to go anywhere alone and his anxiety causes selective mutism which means he will never be able to advocate for himself. He is at a special school but doesn’t really fit in there and has no friends. He has seen his elder siblings become independent and leave for university and has told us clearly that he never wants to leave home.

In some ways, we have it ‘easy’ as he is good at entertaining himself, loves playing with Lego, researching his interests on the internet etc. But he can’t bathe or wash independently, prepare simple food, be left alone in the house even for five minutes (due to his anxiety). He has insight to know he is different to other children and dreads growing up. I know it would hurt him deeply if couldn’t live with us. I don’t know what the answer will be when he gets into his twenties.

@Itisbetter - I still do not know why from my post you think that I am against people caring for their son/daughter in their own home. We have chosen supported living, I presume you have chosen a different option. However this does not make you a saint or me the enemy.

There's a thread running about a person complaining about a sen family member pushing the christmas tree and "why didn't they just leave when he was getting overwhelmed ". I like this thread more. Christmas can be a time to reflect and sometimes that can bring joy and sadness

The property the service user lives in doesn’t count towards the financial assessment when the care is provided at home. It is worth looking at a Disabled Persons Trust though.

This post really resonated with me. I have a 51 year old sister who has severe learning disabilities. She needs help with all basic tasks and can never live independently. My parents are in their mid seventies and they still care for her 24/7. Every christmas/birthday I buy her gifts, mostly clothes but also the sort of toy you would but a toddler. OP I can't completely imagine what you feel as a parent but I see it in my parents eyes. They are amazing and the bravest people I know. As are you and all parents of children with special needs.

@MsDianeBarry i thought you were unkind/unfair to OP as I said when I responded to your post. I’m sorry you are finding that hard to take on board. I can live with that and nothing I have posted suggests I think I am a saint. I think this back and forth is derailing the thread so I won’t be responding to anymore of your thoughts. Have good evening.

Another funding avenue worth investigating for those with complex needs may be CHC funding.

I visited my sister in her care home yesterday. I know I’m not her parent but this is the only post I’ve seen that has resonated at all about what it’s like to have family in care. It must be even harder as a parent.

My sister barely spoke to me, didn’t look at me, then coughed so much she retched saliva and mucus all over the floor and down her top. Then had a go at me for asking her to go and get a dry top. Didn’t make any attempt to clear up what’s she’d coughed up, just left it on the floor. It was so depressing. She’ll never get better and it’s so so sad.

We have struggled this Christmas as DS2
( 20 with ASD and SLD) displays very controlling behaviour when anxious. So we ( DH, me and DS1) are not allowed to do certain things like sit and chat together, watch TV during the day, have Christmas lights on ( or sometimes any lights). Any attempt to do these things results in meltdowns which can be dangerous. He also questions us continually throughout the day about what’s happening next - he can’t bear any deviation when he’s in an anxious mood. Luckily DS1 is very understanding but he’s at university a long way away and we don’t see him much - so I find myself really resenting DS2’s demands and the way he doesn’t allow us to have a ‘normal’ Christmas. We are looking at setting up supported living in the next couple of years - he will probably need 2:1 care - but at the moment it seems a very far away and unattainable possibility as I can’t imagine anyone except us giving him the care and attention he deserves and needs. My sympathies to all those struggling at Christmas. It hasn’t always been like this for us - when younger DS would sit and eat with us, open presents etc - but as he’s got older he’s become less and less engaged.

Thank you op for starting this thread

Got through Christmas, just New Year now which will be quite similar here.

I appreciate all comments thank you all, I will save the nuggets of advice and might check in with some of you at a later date if something resonates.

The comment "why didn't they just leave" sums up our experience with friends and family over the years.

If covid never happened I would have been less reluctant to consider supported living, but we will need to put some contingency plans in place. I haven't come across CHC so will look into it.

Thank you all again and wishing you all health and strength to keep going.

Much love ❤

Well done everyone, holiday are always such a challenge aren't they. DS is 23, ASD and SLD and has just moved into supported living. He's home for 3 days over Christmas and yesterday went better than expected but today didn't. I've learned to just go with the flow now 🤷🏼‍♀️

It's taken over a year and two formal complaints to social services to get his supported living placement sorted out, also delayed while the charity who run the house recruited more staff. His care is fully funded by SS, he would have to pay if he had his own money over a certain amount. I'm currently applying for UC as he needs more than his PIP to cover his living expenses, waiting on the health assessment at the moment.

His is a shared house with two other residents with very similar needs to DS, all have 1:1 12/14 hours a day with one carer overnight and a second on call. They all have their own daily timetables and go out every day. They mostly stay downstairs in the large communal area when they are home during the day, there's enough room for them to each have their own space if they want but they seem to be gelling as a group really well. DS has a motability car so it's easy for his carer to take him out.

Someone mentioned wanting care in a family setting, this was suggested to us but DS wasn't suitable as his care needs were too high, would be great for others though. We were very lucky that this place was available for DS, we already knew the charity and various people working for them. Their record keeping is excellent so I can see very detailed records of the care provided. Despite all this and having had to fight really hard to get here signing his housing association lease almost broke me. He's very happy there though and we are planning that he will come home once a month.

I would love it if ds was able to live with friends in a house. I wonder if anyone has any support at home? How has that worked out and how did you access it.
@BensonBunny we applied for UC recently and I found it a much less worrying/stressful process (so far) than DLA/EHCP/PIP. They couldn’t have been kinder or more helpful at the job centre and we now communicate by message and I can go in by myself if I need any support with anything.