Hi everyone,
I’m new here and wanted to say hello to you all. I am a full time carer to my daughter. I find it so isolating some days and hoping to find others in my situation here to share the highs and lows of our lives and hopefully make some new friends along the way 
Take care all
X
Hi & Welcome Lollipop
What age is your daughter?
Hi sunnydisposition,
How are you ? My daughter is just coming upto 18.
I am well many thanks!
So do I guess your daughter is coming in to adult services territory. I always think this can make parents more anxious. When children are at school and times can be difficult. Advocating for the needs to be met can be far easier. Have you got a good social worker for your daughter. Have any educational plans been put in place.
Glad to hear that you are good
Yes we are just doing transition, I do feel at a loss to be honest… how much do I do, what do I do? I guess I just carry on as I am ?
We have a new lovely social worker, The assessment has just been completed and we will be with LD social services until my daughter is 25, so a long time to work with them.
Who do you care for? X
When my son was approaching transition, I had some very good advice.
I was told he was entitled to education until he was 25, to make sure he stayed in school/college as long as possible.
After the inevitable fight for funding, he went to Fairfield Opportunity Farm at Warminster, which he loved, and wished he could stay forever. During that time he developed hugely, doing things he would never have done if he’d stayed home with me.
In another life I cared for many young people with learning and physical disabilities. And many did transition to adult services further education and college etc.
It’s good you have a nice social worker. All you need to do as you have with school. Make sure the education plans are updated and met.
Normally transition assessment start at sixteen. But at least it’s been done.
Hi bowlingbun
Thank you for your reply. How old is your son now ?
My daughter is in 6th form at the moment, and will have another year there… we are then planning on college - so I’m hoping things will be positive over the next 7 years and that she can stay in education until 25.
She only manages a very reduced timetable but at least its some time out the house for her.
X
Hi sunnydisposition,
My daughters in a SEND school, but tbh the transition to adults has only just started this year… so its all quite rushed… but our professionals are all so fantastic
It’s never to early to look at local colleges. Most do a life skills course which help individuals learn independent living tasks.
I found before starting College. To gently bring in some basic life skills at home. Then it’s wasn’t such a shock at college. Some times I would speak to other parents. Who had hoped College would teach their children the life skills they needed. Were disappointed as some children would say why do I have to do that now.
I also had a teenage relative with special education needs living with me. They wanted to live independently but had no life skills. When I started to ask them to do there washing and normal household tasks. They would say I never did that at home. I engaged with local social services and found a Mencap property. And the assessment stated that in order to keep the flat. They would be expected to follow their care plan/s. To keep the flat in good order and do daily/weekly tasks. After several years they moved out. And now lives independently.
I remember when they were young family saying they would never live independently.
I also fostered a child in special education. And many professionals had low expectations of their future. They also now live independently. Don’t get me wrong it may sound like it was easy and simplistic. But it was hard work and lots of knocking on professionals doors.
Sunnydisposition,
Thank you, sounds like you have done an amazing job with these young people. I struggle a lot with guilt and think my daughters life is hard enough as it is, and anything I can do to make it easier is what I will do. But I am slowly realising in the long run this is not going to be helpful.
I am trying really hard to see how I can change the balance so to speak - we are currently re looking at how we can use the direct payments and I’m realllllllly hoping college will spur her onto wanting a friend or 2 - she just wants to be at home or just do things with me.
x
My son’s college was a member of ?Natspec(or similar name). National Association of Special colleges. Don’t expect the council to help you find one, as it will cost them more!!!
What are your daughter disabilities as there are many different groups. And a lot of charities run teenager fun activities groups. Offer outings etc. It will help your daughter and I know it sounds daunting. But you just take one step at a time. And it seems getting her to make friends is somewhere to start. But I can guess it’s been really difficult. You are her safe haven and a reliable adult. There maybe a pen pal organisation near you. If your daughter struggles with face to face etc.
The hardest thing of all is knowing one day we will not be around to help any more.
Social Services are trying to reduce budgets and I can’t help feeling Covid is helping this!
How many hours support a week has your daughter been allocated? Is she getting all the benefits she is entitled to?
My son is now 42, lives alone in a privately rented flat, with carer support and, usually, day services.
He went from the farm college to a lovely residential home in Cranborne Chase, a mini stately manor, walled garden, wonderful manager who organised an amazing variety of activities. We thought it was his home for life, and he was so happy there, lots of people to chat to, lovely room, etc. etc. Then some regulations changed, the home changed hands, my son was moved to another care home without anyone telling us, on holiday, or even Social Services!! Then the provider moved him again, to a tiny room and initially one other (female) resident, and sleep in staff. Sleep in then removed, replaced by another girl. This put my son in a very vulnerable position, and lots of stuff was stolen, leading to a Police investigation. The ILF insisted he move, and the new care provider found him his current flat, on the edge of the New Forest. It’s a lovely flat, we’ve made it into a real home that is the envy of his staff, but he’s so isolated. Usually he had day services, but most of them closed, and he’s been alone for up to 19 hours a day. For health reasons, I can’t care for him full time.
Residential college was great, so much going on, and they took turns in cooking the main lunchtime meal. Also supported to care for their own things. He became more independent than he would have done with just day services.
I would urge you to consider residential college, if you can find the right one. My son always came home a lot, especially in summer to go to steam rallies with our steam engines.
Then find somewhere near enough to be able to visit when you need to, and there will always be things for mum to do, but far enough away that the care providers can hopefully do more and more as you get older. Ideally find somewhere that your daughter has the tenancy for, so that whoever cares for her, she stays in her own home. My son is so proud of his flat and his little back garden, he keeps it like a palace!
I would never have believed he could be as independent as he is now when he was 18, he matured so much between 18 and 35, but now seems to have reached a plateau.
Hi @Lollipop
I wanted to wish you a warm welcome to the forum and to highlight some of the options for connecting with fellow carers and for getting support from Carers UK.
Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.
You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK - the next online meet up is today (Monday 12 July), 15.00-16.00 with further sessions shown in that link. This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.
Share and Learn: Share and Learn | Carers UK - these sessions range from creative writing activities to beginners Latin dance sessions.
There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
Carers UK also provide information and guidance to unpaid carers. This covers a range of subjects including:
Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions.
Hi Sunnydisposition,
How has your day been ? thank you for your replies - what a lovely group this is
My daughter has autism, high anxiety, moderate LD and physical health difficulties. She currently has no interest in friends so that makes all the social groups not an option… I LOVE the pen pal ideal - I have never thought of this - something I am now going to look into - thank you!!
Hi Bowlingbun,
How are you ? have you had a good day?
Thank you for the reply - sounds like your son has done amazingly well - and even through the hurdles you have come out in the best situation - reading how proud he is of his flat made me smile.
I think I have a long way to go yet - I cant even consider looking at residential - I need her home with me… I can allow myself to think of her having a flat maybe one day with support workers and very possibly a therapy dog… that’s my though trail at the moment… I find it really hard thinking and planning for the future - I hope like you say that some independence kicks in after 18… it’s so tough as my life is literally ruled around her - I know now she is reaching adulthood - I need to re address things… gosh it’s so hard…
Hi Rob,
thank you for the message and the lovely welcome - what a lovely group!! Thank you so much for the links - I will have a look now
Hope you all have a lovely evening - what’s left of it!! I have just sat down - hence my late reply
x
Some friends and I started a charity for all families with a special needs child, self referring over 30 years ago, so there is a group of us who have grown older together. Friends were horrified when I “put him in a home” at the end of college. Those same friends now bitterly regret not allowing their child to leave home as I did. Every year you leave it, the decision gets worse, ground down by inadequate services, lack of support. The transition gets worse for the adult child too. I had cancer at 54, touch and go for a while. Less than 2 years later, 3 months after I was widowed, I was seriously disabled in a car crash. Fortunately I was driving my husband’s Range Rover but that was written off and my knees were damaged badly. What would happen to your daughter in similar circumstances? M has two homes, here and his flat. He can chop and change easily. He joins in all daily events, but I have been able to support him through the move, talk to his staff etc. Moving out at a time of crisis would be awful for both of you, and the opportunity of a vacancy nearby would be nil!
Have had a good day!
https://www.autism.org.uk/advice-and-guidance/the-spectrum/penpals
Hi Bowlingbun,
You are incredibly strong and have made really tough and hard choices - but without a shadow of doubt the right one - this is my aim to know that come a day I am not here that my daughter will have the skills and be in a setting that she can be as independent as possible. I am just not quite ready to act on anything as yet… she is still 17 at the min - 18 at the end of the month, so I am certain over the next 5 plus years things will have to change - and in her best interest…
I am sorry to hear of your cancer and accident - I do worry if things like this were to happen how we would currently manage.
I hope you have a good day today
S