Welcome, why not introduce yourself?

[charlene]

hi my name is charlene im new to this and a bit slow getting used to this so apologies. my son iis undiagnosed asd aspergers and in the process waiting for assessment. i am feeling rather overwhelmed by it all. i have joined this forum to see how other people cope with things and find information.

[sianwhite]

Hi @charlene, welcome to FamilyHub!

It’s great to have you here.

If you’re feeling overwhelmed then you’ve come to the right place to speak to people in the same boat as you. Why not start a new thread about how you’re feeling? It might be easier for other users to find and respond to.

All the best
Sian

[claudette]

Hi I am Claudette I have a daughter who is 21years old with fragile X syndrome which is mild learning difficulties. My hopes are for her to get a job and move into independent living.

[sianwhite]

Welcome to FamilyHub, @claudette Enjoy having a look around!

If you have any questions about employment, there is an employment expert Q&A running which you might be interested in. Feel free to join in!

All the best,
Sian

[Jac64]

Hi Im Jackie from Suffolk, i have 2 son’s 23 and 21. My 21 year old has ASD and Severe Learning Disabilities.
I feel that when my son was a child i had quite a lot of support , but now he is an adult, we are just left struggling to understand the adult services and as a child everything was a fight, as an adult things seem to be a full scale battle.
I feel quite isolated and unable to chat with people in a similar boat to myself.
Im currently trying to seek help and support on independent living / supported housing.
i was told to register my son for social housing but they are saying he can only bid for one bedroom properties. He needs 24 hour care and would need a bedroom for support workers.
Seeking advice and support from others who may have already “got the Tshirt” with this logo on it.
Look forward to chatting with others on the forums
Jac

[sianwhite]

Hi @Jac64,

Welcome to FamilyHub! I hope you’ve enjoyed looking around so far!

I’m sorry to hear you feel isolated, but you’re in the right place to meet people who are in the same boat as you Welcome to the community!

If you’re looking for help about supported housing, have you seen the Ask the Expert thread on housing? Rod from Golden Lane Housing is answering questions and he might be a good place to start.

All the best,
Sian

[jorose]

Hello , my name is Jo . I have a beautiful 21 year old daughter who has a rare metabolic liver diease . she to follow a highly restricted low protein diet with restricted Tyrosine and Pheneylanine diet containing just 10 grams of natural protein daily with medication and supplements. My daughter has Receptive/Expressive language difficulties,Dyslexia and processing of information .
Hoping for some guidance due to feeling I’m out of answers due to the challenging difficulties
Thank you for listening

[sianwhite]

Welcome to FamilyHub, @jorose!

I hope you enjoy reading through the information people have already posted, and feel free to start your own discussion if you have questions to ask or stories to share

All the best!

[jorose]

Thank you . I have had a good look and what iv found has been helpful so far.

[Peevs]

Hi all my name’s Yvonne. I have an 18 year old daughter with ASD. Life has been difficult and I’ve been there, done it and got the t shirt! Always willing to help if I can and always looking for ideas too.
My hope for the new year is that she gets social care support!

[sianwhite]

Welcome to FamilyHub, Yvonne!

[chris.haddock]

Hello, my name is Chris, it’s good to be here

[Karen332]

Hi,my name is Karen ,I have a daughter who has mitochondrial disease which in turn has caused brain damage so she is classed learning disabled ,she is struggling with recently becoming bed bound and relying on me for care,but the main concern is getting her over the abuse she has suffered whilst in supported living ,I have given up my job to care for her which is a bit of a struggle but I’m her mum so will do whatever I can to care for her ,but am finding it very difficult after 14 yrs away from get ,she went away a teenager and has come home an adult with lots of issues ,thanks

[mumstime62]

Hi everyone happy 1st birthday to the hub x I am a carer to two boys they have learning disabilities and autism now they are both adults there hasn’t been any support for years I also care for my husband who has a progressive disease so I also care for him life at the moment is writing forms and trying to get support having someone to talk to would help x

[stirwall]

Hi everyone. Thanks for allowing me to join!

Myself and my husband are parents of a 38 year old man with autism and moderate learning difficulties. We used to live in Pembrokeshire but have relocated to France. Our son, Ben, still lives in Pembrokeshire.

He lives in his own house in the community with 24 hour live in support, provided by a Care Agency and funded through the County Council.

He has an incredibly full and active life, is involved in loads of social groups, sporting, music, advocacy, etc and has established a great group of friends, some with their own difficulties, others who he has taken as friends from the groups he has joined within the community.

[Valentine]

Hi,
This is very helpful. I live in Wales with my adult son with moderate learning disabilities and autism. I worry so much about the future it’s spoiling the present. I feel like no one will care for him like me and I can’t let him go.
It is great to read that your son has a full, active and happy life.

[stirwall]

Hi,
It’s good to hear from you. Although we are agonising at the moment about how this new phase of Ben’s life is going to pan out, we realise what a lucky man he is, as so many of his compatriots are struggling just to enjoy their lives with little support.
we have spent Ben’s whole life trying to enable him to be as independent of us as possible, like his two siblings, as we believe that everyone has this fundamental right, and if it requires significant funding and support from agencies whose sole purpose is to do just that, rather than us, then we consider it to be his and our rights as citizens.
its not been easy, and has caused immense anguish to us both over the years, but Ben’s life now is a testament to what can be achieved. No adult with learning disabilities should be put in a situation where they are totally dependent on a family member in today’s Britain. and no family member should be feeling that they are the only ones with sole care and responsibility. A word of caution though: ultimately we are still fighting with and for him every step of the way and will do until we die, but we have been enabled ourselves to lead a much more normal life than if he had been living with us.
I really feel for you. You must be feeling quite wretched, thinking that all of the responsibility is on your shoulders. Where in Wales do you live? Ben lives in Pembrokeshire but one organisation that has provided him with an increased amount of freedom and feelings of self-worth is PPF; Pembrokeshire People First. This organisation, I am sure, exists in other counties too and it may be worth searching it out.
if you would like more info regarding all of the things we have gradually implemented to enable Ben to live independently, don’t hesitate to get back to us. When my husband and I read your message, we both felt profoundly sad. You shouldn’t have to feel like this!

[Emma-mum]

Hi. Congrats on your new cherub! I have a 5 year old with DS. I have had to become rottweiller mum when talking to so called professionals. They all have a bit of paper with Down Syndrome at the top with a list of issues, problems. Health concerns…BUT, they don’t have a bit of paper with YOUR kid’s name on it. Tell them the language they use is offensive. Show them what your child can do. Challenge everything has become my mantra. Your child is amazing, talented, clever and all those things you would wish…and some you wouldn’t. You just have to go the scenic route to get there. Enjoy

[Abi]

Hi!
My name is Abi, i am a uoung adult Carer for both of my parents. I am probably one of the youngest on here with only being 16 but age is just a number to me.

In any spare time i have between college and caring i am doing music playing the piano, singing and playing the clarinet, as well as reading.

Even though i am a carer i love supporting strangers through group chat over on The Mix so i am on of there youngest listener but my experience is far from everyone elses. I bring something different to the table what my other can not bring as much what is i carer and support people 24/7 and i can not help that.

This is my life and i will never change it. Go easy on me i am very new this.

Speak soon

Abi

[sianwhite]

Welcome to FamilyHub, @Abi!

I hope you find it a useful place to be and a supportive environment. If you have questions to ask or stories to share, feel free to start a new thread.

Sounds like you’ve got loads of great hobbies, I used to play the piano and clarinet too

Just shout if you have any questions!
Sian