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Original poster

Any parents of disabled young adults?

86 replies

YogaLite · 25/12/2022 21:41

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??

OP posts:

lipstickwoman · 25/12/2022 21:43

I'm sorry OP. Tell us more.. how old is your lovely boy?

Silkierabbit · 25/12/2022 21:49

I am sorry that its difficult and hope he and you managed to enjoy at least some of Christmas. I have got a 15 year old sectioned in hospital and was hard to see him suffering in there just want to bring him home. Also just finished cancer treatment.

As for coping I have found some of it really difficult but other times cope better. I find it’s important to still do nice things and look after my health like swimming and days out and also spend some time doing things I like. Thinking of you.

Monkeytennis97 · 25/12/2022 21:58

My DS is 19, he has ASD/SLD and is non verbal. For me the saddest years for Christmas were about 10 years ago. There I was today downloading toddler games onto his new tablet. It used to upset me, everything did about his physical aging against lack of mental aging. I totally understand and still have sad moments particularly when around nephews/nieces who are so much younger than him but so much more advanced/independent than he'll ever be.

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Original poster

YogaLite · 25/12/2022 22:01

@Silkierabbit , how the hell do these things go wrong, u understand the pain.
Mine lives at home as I just can't bear the thought of him not being looked after or rather managing the carers managing his needs.

Mine is 28.

At bloody Christmas, when everyone is gushing about their achievements I can't bear seeing people as end up crying if asked anything about us so we crawl under a rock.

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Original poster

YogaLite · 25/12/2022 22:04

Silkie & Monkey, hugs & hugs again xxxx

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gogohmm · 25/12/2022 22:07

It's hard- last week in the entertainer we were in the toddler aisle and she's 25. She's incredibly happy but this is her life, watching teletubbies and in the night garden. Had a minor success with uno today but despite her actually knowing her numbers and colours it held her attention for about 5 minutes

gogohmm · 25/12/2022 22:10

@YogaLite dsd lives with carers most of the time, it was very worrying for her parents but it means we spend quality time rather than managing needs and we can work, she needs 24/7 care so it got to the point of exhaustion

Knittedfairies · 25/12/2022 22:11

My son is 40 and I still get the wobbles at Christmas. He has a supported living placement, so not at home with us but it's still bloody hard.

Original poster

YogaLite · 25/12/2022 22:13

@gogohmm yes, I relate to that :(
We still use Duplo train and it's me building Lego as he lost his dexterity, it's heartbreaking.

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Lovemusic33 · 25/12/2022 22:14

My dd isn’t quite an adult (almost 17), Christmas has always been hard, we just stay home and ignore what other people are doing, Christmas for us is a bit different, I try hard to keep to her routines and to keep her calm. She doesn’t do surprises so she knows what her presents are before opening them. The future for dd is scary, I have been talking to adult services ready for transition to adulthood and it seems worse than children services. I don’t know what the future holds or what next Christmas will hold. I do understand how you are feeling, it is a type of grieving, grieving for what we thought Christmas should be like.

Dd has hardly slept for 3 nights, today has been hard and I miss not having what other families have. It’s ok to feel this way.

IncessantNameChanger · 25/12/2022 22:18

Mine is 10 so no way near being an adult. It's is truly shit, horribly sole crushingly shit belive me. But my son is so happy most of the time. My 19 year old is very very clever. Gifted even and as miserable as sin. Over Christmas I feel worse for the eldest. He just hates life. I can't see him ever being happy.

My ten year old will never has big brothers sadness. He will always be a happy little kid. Not that that makes it OK, it doesn't. It would be patronising to say it did. But he is genuinely happy regardless.

Spck · 25/12/2022 22:18

Yes it is hard but it isn’t all roses in other houses without disability I’m sure. I think it’s about acknowledging it’s not the same as other places but then trying to celebrate what you can in terms of achievement. And then thinking it’s only one day. I also think that those of use who live with disability day by day have the secret insight into the special joys there are when our children achieve beyond what we ever thought they would do. Rhys joy is like nothing else.

Original poster

YogaLite · 25/12/2022 22:22

@gogohmm I think I am getting to the point of exhaustion.. not sure how we can achieve adequate support with changing carers, food etc. What sort of placement does your dsd have, is it shared living or some sort of a home/charity/council? Was it a fight to get the right place?
Did it work first time?

@Lovemusic33 yes, that's what we are like, hide in a shell out of sight of everything else :(

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Original poster

YogaLite · 25/12/2022 22:30

@Spck, sadly no joys or achievements here, his body is now working in reverse in both physical and mental terms. If it was "just" physical, there are still options, but for him there aren't any, just that he is still living and breathing.

And my God, I would give a lot for not having to live with that "insight".

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doubleshotcappuccino · 25/12/2022 22:38

Ours is watching others prepare to leave home knowing he never will ... we continue to be grateful for all that he is not all that he is not but it's hard not to worry ..

cansu · 25/12/2022 22:38

My ds lives in supported living. I am mostly OK with things now. If I start comparing him with my family and friends' children, I feel sad so I tend not to. I try and accept him for what he is. He was happy today doing his usual activities. It became easier when he moved into his own place as I go to see him but now have my own life back. I recommend supported living of some kind so you can get some normality back for yourself. You can still be very involved if you like. We see ds twice a week normally. I am still very much involved. The carers speak to me about what he needs, his health and well being. It is not perfect but what is?

purpledalmation · 25/12/2022 22:47

We are suing the fuckers who destroyed part of his brain at birth. No apologies whatsoever for it. That anger and determination to get justice for him keeps us going. When he is unwell the sadness is overwhelming but he's a bright child trapped in a useless body and most days we do our best to give him the best life we can. It's got harder as he has got older because the physical aspects are worse (massive operations, illnesses etc) but he is basically happy if we can keep him out of pain.

gogohmm · 25/12/2022 22:48

@YogaLite

Placement in a house with other disabled young adults with 24/7 care. Set up by social services. It varies by model around the country but your adult social worker is your first port of call. It took around 6 months to set up. Many places will have wait lists but worth waiting for the right setting for your dc's specific requirements

gogohmm · 25/12/2022 22:51

And @YogaLite she controls her own budget (well her mum does) and pays for her care package rent (from a housing association) etc from it, it's actually quite generous in our experience for her circumstances

Original poster

YogaLite · 25/12/2022 22:53

Oh @purpledalmation that's hard and extra stress, like if dealing with day to day wasn't bad enough. I do worry what mental stress is doing to me :(

Those of u who have 1:1 supported living, how does that work?

I looked at it a while back but not seen 1:1, it was always a shared house or care home and never 1:1 and what I couldn't cope with at the time was that he would be in his room alone with no interaction except for perhaps meals, toilet etc.

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Original poster

YogaLite · 25/12/2022 23:00

Thanks @gogohmm yes, we do have a social worker.

We visited a couple of places in the past but saw people sitting in rooms by themselves with 1 carer per house, possibly another ad hoc during the day for meals etc. But my ds has significant mobility problems and can't manage wheelchair himself, my worry is that he would just be stuck in a room by himself?

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purpledalmation · 25/12/2022 23:04

@YogaLite The legal process takes years and all the time you are struggling for equipment and help. The gaslighting that goes on is a disgrace and has caused more stress than caring for DS.

I feel so sorry for all parents of disabled young adults as it does get harder as they get older, and a progressive condition is soul destroying. We've had to see DSs physical health decline, but at least his mental abilities are intact. ❤️❤️❤️

Original poster

YogaLite · 25/12/2022 23:12

@purpledalmation, don't envy u, the legal side :(. I know of a family who did get some payout and created suitable living space for their ds so it can be done.
We have "only" been through statementing, various educational appeals and most recently PIP tribunal and that was bad enough.
So so hard to carry on, very best wishes x

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Itisbetter · 25/12/2022 23:14

Yes I know that deep hollow pain. For me not Christmas based but sudden unexpected moments of sadness.

You are not alone, there are many of us who got the harder life. Be happy hard when you can..that’s all I can do.

Original poster

YogaLite · 25/12/2022 23:19

@Itisbetter appreciate your kind words

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