Cerebral Palsy
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Daughter in the process of looking at universities - I'm finding it daunting

mmarquismmarquis Member Posts: 6 Listener
edited June 2018 in Cerebral Palsy
I have a 17 year old daughter who has quadriplegic cerebral palsy and dysarthria. She was born at 29 weeks along with her twin brother, she's a very determined young lady who just wants to be like everyone else. She can walk independently, has a weakness on her right side, so doesn't tend to use her right hand much and her speech is a little slurred, but you can understand her.

She is studying her A-Levels and hopefully predicted to get B's. She is in the process of looking at Universities, which I'm finding very daunting, plus we are trying to find her work experience, a part time job and she's just started driving lessons. 

Think I'm finding this stage very over whelming, she still comes across as quite young, maybe because she's not been out there in the big wide world (her brother has been away with friends to Scotland, has a part time job and has traveled to London from Essex for work experience). She has an amazing brain and is fantastic in debates, loves to talk about politics and can be confident with people she comfortable with. 

Think I've joined this group at this stage of her life because now is the time I have to start thinking of her away from home and I'm apprehensive, I think going away to University will be the best thing for her, she will be able to grow into the adult her brother has already started to become, but I'm worried about will she get the help she needs, to live on her own, to cope with the course, to make friends (real friends). If anyone else has been through this stage with their child I'd welcome any comments.

This is probably supposed to be a short introduction, but I feel I've waffled on a bit so sorry about that. 

Thanks for reading
x

Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,245 Scope community team
    Hi @mmarquis
    Thanks for your post and a very warm welcome to the community! 
    The transition from A-levels to Higher Education is daunting at the best of times. I used to work in Under Graduate admissions for the University of Warwick so as part of my role I advised parents whose children had impairments.
    The vast majority of universities have student support departments which can facilitate a smooth transition into Uni life and provide accessible accommodation. There are also some benefits that your daughter would be able to claim, DSA. 
    https://www.gov.uk/disabled-students-allowances-dsas   
    I would advise that when your daughter has made her five UCAS choices that she calls the relevant student support teams to have a chat about what they offer at each particular university. Also, attend every open day you physically can. That way you can meet face to face with the support teams and view the accommodation on offer.
    There also a great organisation www.askjules.co.uk that specialises in helping young people attend university.

    If I can help further, let me know.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • mmarquismmarquis Member Posts: 6 Listener
    Thank you Richard that's really helpful
  • floraflora Member Posts: 8 Connected
    Hi @mmarquis

    your daughter will be invited to go for a disablility support assessment after you’ve submitted her application for disabled student allowance.  I have an autistic son who went through this.  They will put together a comprehensive support package 

    To fund her way through an msc, my daughter worked for a year as a support worker for a young lady with cerebral palsy who was doing a maths degree. She had, funded by dsa, a room on campus’s fully modified and adapted to suit her needs, 24 hours, 7 days a week support for all her needs (including personal care, support in lectures and socialising). It was brilliant.

    i would say my experience as a parent of a disabled student, and from mu daughters experience as a working student, the support available for students in higher education is refreshingly forthcoming. It’s the only support I haven’t had to fight for , for my son


    flora xx
  • floraflora Member Posts: 8 Connected
    Ps, I also know a young woman who was born with only one arm and one leg. She too was supported by dsa and determined to fit in at university. She had funding so she could pay for one of her fellow students to help carry her books etc around campus.

    Basically, DSA will assess your daughter and fund whatever she needs so she can successfully enjoy life at university 

    xx
  • mmarquismmarquis Member Posts: 6 Listener
    flora said:
    Hi @mmarquis

    your daughter will be invited to go for a disablility support assessment after you’ve submitted her application for disabled student allowance.  I have an autistic son who went through this.  They will put together a comprehensive support package 

    To fund her way through an msc, my daughter worked for a year as a support worker for a young lady with cerebral palsy who was doing a maths degree. She had, funded by dsa, a room on campus’s fully modified and adapted to suit her needs, 24 hours, 7 days a week support for all her needs (including personal care, support in lectures and socialising). It was brilliant.

    i would say my experience as a parent of a disabled student, and from mu daughters experience as a working student, the support available for students in higher education is refreshingly forthcoming. It’s the only support I haven’t had to fight for , for my son


    flora xx
    Thank you Flora, 

    That's so lovely to read. I hope your son and daughter are continuing to enjoy their chosen paths.

    Michelle
    xx
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @mmarquis, and welcome! I graduated from uni in 2016 and, whilst it was written with a completely different condition in mind, I wrote a short guide on attending university with a chronic illness for the ME Association focussing on some of the things that I had to think about. If you fancy a read, you can find it here!
  • mmarquismmarquis Member Posts: 6 Listener
    Hi Pippa, 

    Many thanks for this, I have downloaded the attachment and will print off a copy to read later (after work). I'm also going to pass this onto my daughter as well, as I think she'll take note of other students views. Quickly reading the first page I see you say about possibly not moving too far away from home which is something I have tried to encourage, as even though she wants to move away (and I think she should), I also want to be able to get to her in a reasonable amount of time if needed.

    I wish you lots of luck in your bright future and thanks again, already I'm feeling a little less worried.

    Michelle
    x
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @mmarquis, you're so welcome. I really hope it helps!

    I'm so glad you said that- it was feedback from other parents who suggested this and I was unsure about putting it in, because in an ideal world we should be able to study anywhere we choose to. But I definitely couldn't have made it through without having my support system in relatively close proximity! All the best to you and your daughter!
  • clairek5clairek5 Member Posts: 6 Listener
    University was a life change experience for me . I also have cp . I moved uni at the end of my frist year due to lack of support. but loved uni from then on my need asseor was great and help with any issues and support in my other uni was great just make sure they know your duather need.  People want to help and will .persnol care came from another bugect when I was in uni but might be different now . Hope everything goes well in the move to uni .ps sorry about the bad spelling 
  • mmarquismmarquis Member Posts: 6 Listener
    Many thanks Claire.
    I'm sorry to hear you had to change Uni's but am pleased it was a positive experience in the end. 
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