Considering supported living for my 27 year old son

[Pumpkinsweden]

My beautiful son is 27 with Downs Syndrome. I have been pretty much solely responsible for his care as his father does not really engage and is not in the picture. . I don’t believe my son is living his best life with me and I am tired. So tired. He has autism as well as DS. I am looking into supported living so that he can live independently of me and make more friends, but ………the decision is breaking me. I feel so guilty and believe as his mother I should look after him forever! But my rational brain tells me that is not possible. I love my son but I am getting older and know I can’t be that young mum with all the energy I used to have. Why does it still hurt so much and how if you can help me rationalize this please help!

[class9F]

Our son is in supported living, also 27. I still feel that I should be looking after him but it takes a long time to get everything working right and I remind myself how much worse it would be if I was older and didn’t have the energy to check things were going well and sort out any problems, or if the worst thing were to happen and I died before he was fully settled. I am his DWP appointee so am managing his finances so still heavily involved and see him every week and can pop in whenever I want. I’m lucky in that his flat is only 3 miles away, it would be much harder if he was further away. It takes a long time to find somewhere suitable and get social services to fund so the sooner you set the wheels in motion the better. You’re probably looking at 2 - 3 years to find a suitable place and get funding.

[CynthiaLai in reply to class9F]

thanks for sharing. I have a son with autism and at some point I will definitely be looking for supported living as an option because he has got no one else. What was your process of finding a place and getting support from the council??

[class9F in reply to CynthiaLai]

it was a nightmare . Places the social worker suggested were unsuitable. One even had a requires improvement rating from the CQC. I relied on google and phoned around myself. Once I had agreement from a provider who could meet his needs and were in the process of converting a home into individual flats I went back to the social worker. I had to get my local MP involved to get funding agreed. In my experience social workers move departments a lot. The lifelong disability team seems to be the worst as they get told there is no money for anything and get demoralised. They start keen but soon get worn down.

[CynthiaLai in reply to class9F]

that’s shocking how you had to find a care provider on your own . I am assuming the one you have now is one you are happy with and they have an acceptable CQC rating? Are you happy to share the name of your provider I am guessing they also are a registered provider if they are proving housing. Would be interesting to hear if they operate in other areas in the uk. I haven’t been able to get a social worker , we got one temporarily but after assessing him for 4 months they said he didn’t qualify because he wasn’t disabled enough! This is despite the fact that he is on 2:1 at school ! I am not sure what to do as I went back to SPA and they just keep redirecting me to the same team who say no…

[class9F in reply to CynthiaLai]

The provider is Dolphin Homes who are in Hampshire and West Sussex. They currently have 2 supported living places and the rest are residential. Supported living is a relatively new venture for them so there are still a few teething issues but on the whole they are good. A lot of the staff are inexperienced but they are learning quick! The Manager and her deputies are very good and sort out any issues quickly. The landlord for the supported living flats is Inclusion housing who are based in York but have properties throughout the UK. We had very little contact with them as it was all done through Dolphin. Our Social Worker is newly qualified and terrified of saying or doing anything wrong so half the time does nothing at all. We didn’t have a social worker until our son was 18 when social services realised that 14 years in a special school hadn’t ‘cured’ his autism and he would need help for the rest of his life!

[CynthiaLai in reply to class9F]

thanks so much for this info super helpful. Will check out Dolphin to see if they operate in our area or if they know anyone else who do. . I might also get in touch with social services again to see if I can have another go at getting a social worker.

[Chiquitita73]

Dear Pumpkinsweden.

From a mother to a mother I can relate to how you feel.

I'm having talking therapy and it certainly is helping me and changing the way how I feel. (less guilty to make the decision that at some point it's inevitable )

I know in my heart that when we reach out for help it's because we want to do right by our young. Like you I'm a single parent I try my best to help my son for the past 20 years.

In order to look for the right place for your son you need to be guilt free and have the right support network. For sure it's not going to be an easy task to find the right place for your son. My suggestion is refer yourself to back on track or ask your GP to do it for you. It may take a few months before they give you a counsellor. This may give you the support needed to find a good place for your son.

Best wishes

Paulina

[BenjiB]

my son moved to residential care last September, he’s 24 now.

He’d already been at residential college for 3 years before that where he lived a very full life. When he was home during the holidays he became bored very quickly.

We spent a year looking for a place, we worked with the placement team at our local council who were amazing. We eventually found a wonderful place which was perfect for him. Semi rural, plenty of outside space, they even have a private beach which he loves. He’s out most days and even if they don’t go out there is stuff to do at home . I get photos regularly and letters and he comes hime for a week every 6-8 weeks.

I love him dearly but having him at home would have been so detrimental to him. He needs to be active and busy otherwise he gets bored and with boredom comes behaviour. We miss him but seeing him happy and fulfilled makes me happy. I know he’s in very good hands.

We chose residential care over supported living as I just didn’t want the hassle of paying bills, tenancy agreements etc and feel residential care was just not suitable for him. He has very high support needs and requires 1:1 at all times and 2:1 in the community. His care package is expensive, around £5k per week.

[Chaseonthecase]

This helped me. I was fully engaged in the process right from the start. I was able to look at the homes make the decisions and find the best fit I could for his needs. Don’t want to be morbid but I didn’t want to die and then strangers turned up to take him away to god knows where, frightened and not knowing what has happening. I felt it was right to control the narrative right from the start and also my soon needed people his own age to be around. I can’t give him that either. It’s a tough decision and there were a lot of tears. It’s been two years now and I drive them mad at the home he lives in when things aren’t right. I’m still very involved and when he comes home for a sleepover, it’s a treat for both of us. Good luck with whatever you decide to do.

[Nykevad]

You aren't alone, I started talking about this subject to another parent who found it too distressing to continue. I don't know the answer but want you to know you're not alone.

[Galwaybay2]

Hello,

Firstly, you have clearly done everything a mother should have....except let go!

It is hard for parents of vulnerable children to believe that anyone else could possibly give what we do, but sometimes a good placement can give them more of what they need, not less. It is a vital part of every parent's job to let their child go, even and especially if they need state support to transition, but it can feel like a risk, you can be sure you will feel anxious and other feelings that you may not have fully faced yourself. Most children force separation on parents as they wean and particularly as they move through adolescence, you are gently dealing with having to move to the next stage without much choice and if you inhibited that, you would impede them. There is always loss to manage, this is gradual and natural unless the parent suddenly goes, then it becomes traumatic and damaging. Helping your son move into supported living is a kind of echo of teen years, you are solidly alive in the background guiding the process and you re-find parts of yourself, whatever that brings up, but it can be tempting to use the child to protect you from your own stuff. I am saying 'you', but I could have said 'I'. Letting go leaves you space to feel and that may be wonderful and it may not, but it is right to do it. I asked my son, 11 years into this, whether he would prefer to live with me and he said no after he commented on friends who still live with parents, I never could have imagined that and I now know he will be ok when I'm gone.

[Galwaybay2 in reply to Galwaybay2]

A bit rushed and garbled but I hope it makes sense!

[SpeedyH in reply to Galwaybay2]

You are a very wise person 💕

[1946timmy]

My Autistic son is 46 and he is soon moving into supported living , my Charity took 20 years to raise the money to build a 3 bed supported living house. I wish I had done it years ago, I’m 71 and am looking forward to a few years to do what I want. I am dreading telling my son he is going, we’ve talked about it for a few years but because of his anxieties we will tell him when we know the fate of move. I would say do look now while you are both young enough to adapt, it just gets harder. I feel very guilty but I know it’s the right thing to do for us all. Good luck.

[CynthiaLai in reply to 1946timmy]

sorry to hear that Timmy but glad he got a house in the end and a new one at that. I agree with that point I think it is better to adapt if we get them in earlier also emotionally as a parent it gives us a chance to get used to it. I was advised it is always better to get them in early. Incidentally what is the name of the charity that helped you with building the home?

[Steve__]

Sorry to hear of your tough times, and glad to see you have replies from other mothers. I'm a brother, so I can't come from exactly the same angle, but it may be that you can both be a loving mother and get some help where others look after him too. A good talking therapist may help you with how your 2 options might both be possible enough or flexible enough to work for you and him in new ways?

What I know for sure is the moving process is often one than needs some input, and best done when there's a bit of en energy in the tank!

Look after yourself!

Good luck.

[Ragnolia]

Hi PumkinswedenI feel your pain, my son is 28, has autism and daughter is 30 Has Autism and a learning disability. We always said when my daughter turns 30 we need to start the process but it's quite difficult and emotional. For me partly as social work can't say what the support would look like. Or if she knew someone that she could share with, which she doesn't.

I don't know where you live but a local group here are doing an in person support group talking about 'moving home.'

Here is a link to their website and there is a piece called 'The keys to the door'

edg-sco.org

Having said that I think you would be best to get support from a local group. I know I do. I see there are a few reply that you've had which are encouraging. I would rather oversee the moving on than it being an emergency as that would be to distressing for my daughter. I think that's got to be the motivation. 🙂