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Disabled adult children - what now?

SuevalSueval Member Posts: 10 Connected
edited June 2020 in Parents and carers
My husband and I are in our mid/late 50’s. We have 2 children, a daughter aged 27 and a son aged 23. They both have disabilities. My daughter has digeorge syndrome (Inc heart defect, arthritis and thyroid problems) and my son has Asperger’s syndrome. 
We are all very happy considering the difficult circumstances we are living in.
My daughter is emotionally very young for her age and is not interested in having a relationship because of this. My son would like a relationship but is too anxious to do anything about it at the moment.
I am aware that me and my husband aren’t getting any younger. I am starting to look at options for my daughter to live independently. She is intelligent and is currently studying for a masters degree but still gets overwhelmed by life and often needs a cuddle from me. She lived half an hour away from home during her time at university but had support and came home most weekends shattered. 
I am torn! Part of me is saying that it is wrong to change things when my daughter is so happy and secure at home. Part of me is saying that she needs a gentle push. We are fortunate to be able to help her to get a flat and an ideal ground floor flat has come up for sale right next door to her cousin (Who is the same age) and her partner. It is only 5 minutes away from me. My daughter has said she would be interested but I get the feeling she thinks that’s what she should say. She has also said that she finds the thought scary. I suppose I am thinking “if not now, when?” But the one thing that keeps bothering me is that my daughter has repeatedly said in the past that she never wants to live alone. At university she lived is a shared house and was very close to her housemates. It’s at times like this that I miss my parents who passed away a few years ago. Has anybody any words of advice for me?


  • Sorry_SusanSorry_Susan Member Posts: 56 Courageous
    No words of advice but will be following this as my 24 year old physically disabled daughter lives with me and I have concerns about her future.
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,946 Scope community team
    What a difficult situation @Sueval. I wish I was able to make some suggestions.
    Has she been open about the reasons why she wouldn't want to live alone?
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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi, you sound like wonderfully caring parents and your children are fortunate in that.

    Ok, so what about a flat share? Perhaps with someone she knows or even the cousin.

    Being totally on her own could be frightening her. The climate with covid is enough to put anyone off from leaving a secure environment. Maybe now isnt the right time to make such big decisions, eh?

  • janer1967janer1967 Community champion Posts: 7,418 Disability Gamechanger
    Hi what a difficult decision for you and your family
    I do think this is an ideal opportunity for some independence for your daughter and such an opportunity may not come again.

    Do you know why she doesn't want to live alone is this something you can support her with.

    I would also so say it would be better for her if you are around while she makes the transition, would her cousin be able to visit on a regular basis.

    Discuss with your daughter you are only a few minutes away and her cousin can be there  as well 
  • mia97mia97 Member Posts: 21 Courageous

    Hey! Hope you are well and having a good day so far!

    In regards to your post, I can totally understand. I am not a parent, but I am 22, autistic and can definitely relate to the worries regarding to living on my own. I also went to university, lived away from home, returned each weekend for work and was always exhausted.

    I do not have any specific advice to living situation options but what I have learnt over the years is that if you make a decision and it seems the best thing to do at the time, go for it! and if in the future, things don't work out or things start to go a little out of control, don't worry - nothing is set in stone, you can always change your mind, change the situation and make the appropriate changes to ensure everyone is happy. Please let your daughter know this too, there is no harm in trying to live independently and if it does not work out, other options can be looked into. I am sure she knows she is very loved by you and the family and that you will support her with anything. If she believes in herself, this will work and I am sure she will have a great time living in her own flat, hanging out with friends and all the other responsibilities which come with living alone. There is no 'right time' or 'right age' where you must have moved out of home by, I still live at home with my family and as much as I love the idea of living alone, in reality it is not something I wish to do anytime soon. Let your daughter know that she can make the decision of when she is ready, and when she is, whatever her decision, you and family will be there to support her.

    I hope this advice helps and wish you and your family the best. 😀

    p.s. I see your profile picture is of your dog, he looks very similar to mine! Is he a Labrador? my dog is a German Shorthaired Pointer, called Buddy. What is your dogs name.
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