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??

YogaLite
My ds is now in his own HA house with three carers. If your ds has complex needs, it is possible for him to have his own team and his own suitable accommodation. I would actually avoid shared care homes for the reasons you describe.

@Lovemusic33 we’re in a very similar situation to yourself, our DD is nearly 17 and we’re also at that transition phase. Today has been extremely hard, we’ve had one meltdown after another. Christmas dinner was difficult as she refused to have what was cooked, she was overwhelmed by presents and then underwhelmed. It’s so difficult for her to convey what she’s feeling/expects/wants and that in turn becomes frustration, and it’s so hard to not take it personally when your child with SN takes that frustration out on you. All my DD wants is to be able to live what she feels should be normal, her brain and her body don’t cooperate which is so hard to see.
The hardest part for me as a parent is watching DD seeing her peers/siblings live life the way she should be but can’t because her health doesn’t allow it.
I’ve had countless breakdowns today (95% out of view of DD but some I just can’t stop). I’ve felt helpless, at times that I’ve failed and after 12 years of this, you start to realise that you will go through every emotion known to man and sometimes all of them in one day.
Our DD fell poorly at the age of 4 and a half so I went through a grieving process of losing the child I gave birth to. The future is a worry and the red tape to get help and support makes it harder but you deal with the cards that you are dealt with.
Sending my love to everyone and OP you are definitely not alone 🥰

Not a teen but I feel your pain. DC is 3, being assessed for ASD and just lay in bed yesterday and today. No present opening, went to family home and did the same thing. All the nice little things I had planned amounted to nothing. And no family seems to understand why they are as they are (except me obviously).

This time of year gets to me a bit too.

I worked in a shared care home for awhile, 3 guys and the home next door had 4 guys. It was great. Two of the guys in our home didnt like to come out of there room but the 3rd was out often and we would go next door to hang out. They would take the guys on outings to parks and such with the carers. was a super happy place. They did big holiday meals and such too. I have to say it was nice fun job

Was it fun for the two men who didn’t leave there rooms? How so?

I think shared house can work well for some but not for others.
I have been advised to add my dd to the housing list, she needs 24 hour supervision so if she got her own place she would need carers in at all times so I don’t see how it would work for her? She would get very lonely not having people of a similar age around her so I have told them I feel a shared house would work much better.

You have to remember that the ones staying in their rooms do have the choice to come out and are encouraged too, some just prefer their own company. I think it feels sad to us thinking they are lonely but maybe they just like it that way? It is the main worry for me that dd will be left to rot in her room as despite being autistic she does like being around people.

How does it work with supported 1:1 or 3:1 (assume it's 3 carers 8 hrs each not 3 at the same time?), who gets involved in employing/managing them in case they are absent/away?

Just because SN person can't express their needs, it doesn't mean they want to be left stuck in their room. Mine likes being around others but can't easily communicate so can't join in with anything in a group unless someone communicates directly with him - and other SN people rarely do. With hearing loss, he can't hear well especially in busy places and his speech is also affected.

I know that stuck in his room for the rest of his life would rot his brain even faster.

The worry and the guilt is overwhelming, I should have been put down at birth and none of it would have happened. Woke up with puffy stinging eyes :(

Good morning YogaLite hope today is a better day for you. I too am in the same situation and yesterday was hard. My lad hated the change in routine & food. He quite liked his new toys (fisher price Linkamals ..he’s 22!) we had a quiet day yesterday, today we’re visiting family which is always harder. I’m keeping him home for this year, I’m going to take it a year at a time but dont have much faith in people understanding his needs ( severe disabilities, non verbal, wheelchair etc) I love him so much it hurts and my priority is to keep myself well & fit so I can do the never ending care. Sending solidarity and love to my fellow parents/carers this Christmas. Love is everything.

My ds has three carers at the same time and then has two overnight (one sleeps ). It very much depends on needs. My ds has very high level needs. He wouldn't cope well with sharing nor would he get anything from it. I think sharing can work out if the young people have social skills. The problem is that what tends to happen is that the carers do things that the group can do rather than focus on what one person likes or needs. I also think shared care is tricky because you have no control over who moves in. The care company take on whoever they want. If someone moves in and it doesn't work out your family member can then be hugely affected. My dd also has needs and I am thinking of her attending groups and activities for the social aspect as she likes people rather than sharing with lots of others

@EmilyGilmoresSass yes, I relate to "family don't understand". My late Mum was the only one who did and felt my pain, I don't have any other family and on in-laws side he doesn't fit the perfect picture so he doesn't get invited. We are separated so I don't have any contact with them anymore.

Even trivial questions like how is he I find upsetting, he is not and never will be "OK".

@YogaLite i feel your pain.

It's as if life is just going on around us.

Like you, our son lives in our home. We’ve been told more than once that we are the reason he is still alive. He can’t speak/communicate and can’t walk. It is just like having a very large baby. I know if he were in a home he was just be left in his room.

Loud noises and being overwhelmed causes seizures so it would be a good excuse to leave him in peace.

I feel sorry for him, I feel sorry for his brother that he doesn’t get to spend Christmas with extended family, I feel sorry to myself that this may be all we ever have now.

I have no words of wisdom but hope you find some answers to questions you are searching for. Take care.

My DS is 19. Christmas is exhausting and I usually find myself in tears. Transition to adult services has been very difficult in getting the support he needs. We are working towards supported living. Thankfully we have a good relationship with his Social Worker who is moving things forward. We are getting older, he has got so much bigger and we are exhausted. We need to do this for our own health and well being and try to make things work.

Our son is 13, we've had ten years of buying toddler toys and we could have a lifetime of doing so. I think what keeps us going just now is that we know that he doesn't actually know any different - if we are sad, it would be us projecting normal expectations onto him. He is absolutely happy with his life, with the toys that he finds grab his attention, with flashing lights and music.

@GoldenGumballs hugs (x)
Like u I am doing everything to keep on living with the intention of outliving him.

Good luck with family today, we are not going anywhere, I will be making up some simple Lego for him with bricks we have..

I think it is very important to reach out for the appropriate help. @YogaLite - I guess on here you are just looking for sympathy and solidarity but I would recommend finding a life for both yourself and your son.

@Anewuser yes, I also see myself like living in a parallel universe, nothing to talk about in a random conversation with strangers, what do u do, lie about doing things/going places that u know will never happen?

We have struggled many times with adult social services. However it is possible to get a package in place. I think better to do this now before we find ourselves in crisis. At the moment we have two days 1:1 support. This gives us some respite - we intend to gradually build on this towards supported living. My son has very complex needs, it is very very hard but we need to keep fighting for something better. Also we are not expecting things to be perfect - life isn't.

Hi OP, I don't have any advice I'm afraid, but I just wanted to tell you that I really feel for you reading this, especially the last paragraph. I'm so sorry that life is so tough for you. I hope you've got people you can speak to in real life too? I wish there was more help available for people with disabilities and their families. It's all so unfair. Sending you hugs and good wishes x

@Lovemusic33 You have to remember that the ones staying in their rooms do have the choice to come out and are encouraged too, some just prefer their own company. I think it feels sad to us thinking they are lonely but maybe they just like it that way? yes I’m aware that some people like being alone more than others, however I’d question a carer who describes working in a house of three where two stay I their room. I often find in such discussions that the carer found it a fun place to work and is really describing their experience not that of their charges. I meet A LOT of carers and their clients as I care for ds and they often assume I am his support worker. Often particularly at group activities the carers ARE having a great time and their clients maybe not so much (I’m talking about at cinemas, trampoline parks, zoos etc). I think on the whole it’s easier to see the value of a placement if you aren’t providing it so parents and siblings insight is often a better indication of how good a particular model is.

For us I just don’t think sheltered accommodation is going to work and I don’t have a solution. What ds needs is to live within a family. He doesn’t have the emotional maturity to cope with institutional (however lovely and kind) living. I’m hoping he will before I can’t care for him anymore but I see no development.

Yes, when my ds was at a boarding college, a weekly cinema trip and some other activities were "compulsory" even tho he hated them or couldn't do them as there was no one to stay behind with him.

So I don't think the shared option would work for him.

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 guess you are just venting on the Internet but hope in real life that you are a little more interested in finding ways of improving things.

I am trying to see how people cope with Christmas and generally and on a fact finding mission as we are due reassessment next year.

I had never come across a complete 1:1 setting apart from care home.

@MsDianeBarry I would be interested to know what is your set up wrt your daughter, living at home or in some sort of supported living and how easy was it to arrange?