Hello: Hello just joined this site. I have a 30 year... - Mencap

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Hello just joined this site. I have a 30 year old daughter who has special needs. She lives with me and goes to day care during the week. I’m finding it harder to cope as she and myself are getting older( I’m 55) l have just excepted this is how life will be.

13 Replies

Hi crazzy, I’ve just joined this site too. I have a 33 year old daughter, I’m a widow, so it’s just me and my daughter at home, she has cerebral palsy and also goes to day care. I also have help at home and night sits as she’s not a great sleeper. I always tell people it’s not the hard work that bothers me it’s the worry. I just want her to be comfortable and happy, that’s all I strive for!

in reply to Denfow

I know what your saying I just want her to be well and happy. But it’s a lonely place and people don’t always understand.

in reply to Cazzy07

I gave up a long time ago expecting people to understand. Everyone’s situation is so unique. You just have to trust your own judgement. If you believe something is is right, then go for it.

It's so tough, isn't it! My daughter is 31 and semi-independent. She gets out and about - but gets herself into so much bother.

Oh dear I guess that is worse. I guess I know where my daughter always is.

Hi , my son is 21 and about to move Into his own flat within a supported living community. Maybe you could consider same for your daughter ? My plan is to be around while i’m Still young enough to help him settle in his own place & become more independent while I can still keep a close eye on things. The supported living place has 24 hour staff and a communal area . My son has learning difficulties, Autism & epilepsy. So this is a huge step ! I wanted to do this while he’s young rather than wait until I am to old to cope anymore. Good luck x

Hi! How did you find getting the funding for the Supported living. We seem to have to fight for everything in our area. My son is also 21, with learning difficulties and is not independent. SS recently moved him over to Adult Services and we’re now without a social worker. I’m not sure where to even start 😩

Hi, you will get need a social worker, sure they will give you new one soon . I found the supported living place myself, luckily only 10 minutes drive from me ! Then I just insisted on him moving in and wouldn’t take no for an answer! You can ask for an advocate to help if need be . It’s all about ‘person centred planning ‘ these days , so if it’s what your son wants then they have to help . There was lots and lots to sort out , with meetings and care plans ect.. but we got there in the end . Then it all goes to panel and if they don’t agree then you appeal & keep fighting on until you get what your son wants !

My problem is jo my daughter wants to stay with me.

We have the same problem. He will struggle to live away from us, as he has all his comforts here. It’s our choice more than his, but we realise what is good for him in the long term. I’m really not sure whether this will ever happen.

Hya, not really sure if this is a help to you or just a comparison.

I have a 28 year old son who lives with me and I tried to get him settled in some sort of day care centre for 5 years and gave up in the end. Our local authority simply couldn't provide anywhere for him with the 1 to 1 care they stated themselves he must have.

I gave up in the end and gave up work to look after him myself.

Although, at 57 myself, I understand this is not ideal as far as looking to the future goes, I decided to take each year, month, week, day, even hour as it comes and make the most of it or we just end up setting ourselves up for a knock down after building our hopes up.

Not sure if this link will work on here, but this is Olly, he was provided with a wheelchair for the first 18 years of his life, no day care centre could cope with him. Don't waste precious time worrying too much about the future.


in reply to Dunn62

Hi I get what your saying it’s nice to feel I’m not alone.

Hello Crazzy

My son is 31 and in supported living.

We encouraged him from early on, sent him to a residential college to prepare him for independent living. His siblings helped in that they left home so he wanted to be like them and have his own place.

We knew it would take a while, you have to think that your not getting any younger and do it whilst you have the energy. I certainly wouldn’t like to start now ( with hindsight) Better to have a smooth transition from home to independence than an urgent placement to god knows where, there’s awful places out there! That’s very traumatic and not fair to your child.

You’ve got to be cruel to be kind and choose somewhere suitable, be brave. X

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