Turn on thread page Beta

    if she has an occupational therapist they can advise on suitable hobbies, etc, for people with different disabilities, or ways to adapt things they enjoy/used to enjoy before disability stopped it so they can enjoy them more etc

    also what about you / your mum/dad having a word with someone who works with her at college like a tutor or someone, they would probably have some good ideas for things she could do or what other people have found good in the past

    you could also try asking a support group if your family/she has one, or an online one, for ideas.

    depending on how much use of her arms she has something you could do together over the summer etc would be maybe do cooking together and stuff, like she could help mix the mixture or decide what to cook depending on what she is able to do.

    maybe getting her (gently, if she doesnt like strangers) involved in a couple of things out side the home beyond college would give you and your parents a bit of breathing space so that you can have more time to spend with her when she is there, as well as giving her new interests, friends etc

    local to me they have disability sports groups, a swimming club (i used to help there! it was good - even those with pretty severe disabilities could come to the 2nd half, which was in the warm, shallow kids pool, they had all the floats etc and could move a little or just float or talk or whatever), a theatre group, and probably loads more things I don't know about!

    online groups (try www.yahoogroups.com) can be a good source of advice, tips etc and there are usually quite specialised ones
    Offline

    10
    ReputationRep:
    Instead of playdo why not get her some Flymo? And she can make jewellery etc also get her tonnes of beads and you can get stretchy coloured thread (I have loads of silver, gold, purple, baby blues etc) and you can get all differeny coloured beads and stuff.
    It sounds a bit immature, but I still make tonnes of stuff and I'm not even creative.
    And if she doesn't like reading books why don't you get her an old typewriter and some old cards and get her to make up her own book. When I was younger both my parents worked and my au pair was a ***** so i used to get my mum and dad during the evening to cut out pictures and words from Xmas and Birthday cards and make up stories using the relevant pictures and after I had typed them (I was strangely good at spelling etc when I was 3) I'd pritt stick the pictures on, and pritt stick is relativley clean so I didn't make a lot of mess.
    You're such a good sister
    Offline

    0
    ReputationRep:
    Isn't there a nearby centre place, which takes children and adults with disability on outings, we have that in birmingham how about a big swimming pool in the back yard, if she likes water, that'd be great???
    Offline

    0
    ReputationRep:
    how disabled is she?

    here are some ideas though:
    are there any local groups which run pottery classes/art classes, or anything similar?
    would you qualify for some home help?
    i dont know what its called, but you know the weave you get with the little holes and you sew your name, or little pics, or whatever onto it? what about that?
    in hobbycraft and places like that you can get crafts material quite cheap.
    puzzles?
    collecting something and making some kind of archive of whatever it is she collects?
    Offline

    1
    ReputationRep:
    Pretty much everything I'd suggest has already been said by others so I'll just mumble over them.

    Audio and visual - Obviously you've said she already watched television a lot, perhaps try some musicals, or musicals on CD as they're generally very enjoyable and a good way to keep occupied. Audio books are also great, -you don't have to worry about getting distracted from the words or eyes becomming tired, and you can just pootle around doing other things while you listen. As someone said, the Harry Potter tapes read by Steven Fry are extremely good, and I think now you can get them at a reasonable price or just borrow them from your local library.

    Creative - There are so many things you could give her to work with (and again, many have been said!). Perhaps you could have a box full of bits and bobs- beads, felt, card, paper etc etc etc. She could make anything really -maybe you could ask her to make some Christmas cards or similar. She could try modelling with playdough or salt dough (which is easy to make) or you could buy her some paint-by-numbers or silk-painting sets which basically come layed out but you fill in the sections. It's easy, fun, and she'd have a good end result to be proud of, but unless you find a cheap supplier or they're selling them off in a sale they can be pretty expensive. If she's able to, you could get her to do some sewing, maybe make a little project out of it to make a bag or a cushion, and she could add on beads or shaped cloth. If there's a Hobbycraft [edit-suggested by the time I got to posting!] near you, make a visit- they're very good, and often have bargains- you'll probably get a lot of ideas by just looking around at what is on offer. Poster paints are availble in a wide range of colours and the Works sell big bottles for 99p each, which is comparitively very good value.
    On the musical side, if you have a keyboard she could probably have a lot of fun with that -especially playing with the different sound effects etc. If you don't have one, keep your eye out at local car boot sales, faits, in charity shops and the like, as they often have some great bargains.
    For an activity that would involve you a little, you could make some bread dough and then she could shape it in to plaited rolls which would probably be an enjoyable activity.


    Blah, I've mumbled on with very little originality, perhaps you should make a bullet-point list of ideas and see which ones you think are solid possibilities.
    Offline

    0
    ReputationRep:
    (Original post by Dil)
    Can't go wrong with a bit of music... she might be a closet rock enthusiast or classic or whatever It takes no effort to listen to music and she might even be able to go to concert/gigs if they have disabled accomadation...
    my friends cousin has a genetic diseas (i forget what its called-sorry) but she's been to two concerts recently. i remember one of them was justin timberlake's and because she's disabled, she got a seat at the v.v.front and ended up leaving with an almost finished water bottle thrown to her by him and something else...sorry-my minds not working. but i think that's a good idea.
    Offline

    1
    ReputationRep:
    (Original post by Adhsur)
    My sister is 21 years old and suffers from a severe disability called Muscular Dystrophy. This means that as well as being physically immobile (she's on a wheelchair), she also has a very limited brain capacity.

    As she grows older she is finding it more and more difficult to pass her time, and it's getting frustrating for my family to give her constant company and attention. If she is on her own, the only thing she can do is watch TV as she doesn't have any other interests. She cannot read a book as, although she can read, she has trouble understanding things as well as not really being that interested.

    Can anyone please recommend something she can do in her spare time? It's very difficult I know, but we have to think of something fast before she gets bored and depressed or we have to devote the whole day to sitting next to her talking! Will anything be able to distract her from requiring all this attention?

    Please no insensitive remarks!! Rep for a good idea!!!
    Can she do arts and crafts?Because you could buy her a variety of interesting sets...
    Offline

    1
    ReputationRep:
    (Original post by Adhsur)
    My sister is 21 years old and suffers from a severe disability called Muscular Dystrophy. This means that as well as being physically immobile (she's on a wheelchair), she also has a very limited brain capacity.

    As she grows older she is finding it more and more difficult to pass her time, and it's getting frustrating for my family to give her constant company and attention. If she is on her own, the only thing she can do is watch TV as she doesn't have any other interests. She cannot read a book as, although she can read, she has trouble understanding things as well as not really being that interested.

    Can anyone please recommend something she can do in her spare time? It's very difficult I know, but we have to think of something fast before she gets bored and depressed or we have to devote the whole day to sitting next to her talking! Will anything be able to distract her from requiring all this attention?

    Please no insensitive remarks!! Rep for a good idea!!!
    You can get her to do clay modelling because it would give her a nice feeling, glass painting kits and buy her various books on drawing portraits so she can improve her drawing skills...
    Offline

    0
    ReputationRep:
    my aunt has just done a course in dancing for the disabled as she was almost paralysed around 7 years ago. my aunt isnt in a wheelchair anymore so the dancing would differ but i know people in wheelchairs are welcomed and are able to adapt/learn. dearyxxx
    Offline

    1
    ReputationRep:
    (Original post by Danithestudent)
    Instead of playdo why not get her some Flymo? And she can make jewellery etc also get her tonnes of beads and you can get stretchy coloured thread (I have loads of silver, gold, purple, baby blues etc) and you can get all differeny coloured beads and stuff.
    It sounds a bit immature, but I still make tonnes of stuff and I'm not even creative.
    <giggles> FIMO! Flymo is a type of lawn mower..
    Offline

    15
    ReputationRep:
    (Original post by blissy)
    <giggles> FIMO! Flymo is a type of lawn mower..
    i was about to say!


    and how does a girl know about Flymo lawnmowers anyway
    Offline

    15
    ReputationRep:
    I think you should get her playing (xylophone?) or composing some simple music. there are numerous programs out there which allow you to compose and playback without too much trouble. i think music does wonders to get someone's brain working...
    Offline

    1
    ReputationRep:
    (Original post by Adhsur)
    My sister is 21 years old and suffers from a severe disability called Muscular Dystrophy. This means that as well as being physically immobile (she's on a wheelchair), she also has a very limited brain capacity.
    Hold hard, Adhsur! Having muscular dystrophy does not mean someone has "limited brain capacity". It is not an illness, but a set of symptoms caused for a variety of genetic reasons. Stephen Hawking has one type of MD, for example.

    As she grows older she is finding it more and more difficult to pass her time, and it's getting frustrating for my family to give her constant company and attention. If she is on her own, the only thing she can do is watch TV as she doesn't have any other interests. She cannot read a book as, although she can read, she has trouble understanding things as well as not really being that interested.

    Can anyone please recommend something she can do in her spare time? It's very difficult I know, but we have to think of something fast before she gets bored and depressed or we have to devote the whole day to sitting next to her talking! Will anything be able to distract her from requiring all this attention?

    Please no insensitive remarks!! Rep for a good idea!!!
    As you haven't made it clear what kind of MD your sister has, there's little i can suggest: depending how disabled she is, it might be worth seeing about providing attachments to use a computer for her to use, or inquiring at your LEA about courses and training. If she is seeing a neurologist at a hospital- and she probably should be- then it would be worth seeing the hospital's OT and social work departments. For general relief, see your local social services and Volunteer Bureau: they may provide a volunteer to see your sister regularly and give your family a break. Have you been in touch with Muscular Dystrophy Campaign (www.muscular-dystrophy.org)? They may be give you better informed advice and information.
    • Very Important Poster
    • PS Reviewer
    Offline

    21
    ReputationRep:
    Very Important Poster
    PS Reviewer
    http://www.bbc.co.uk/dna/h2g2/alabaster/A899553

    might not be much use but the picture always makes me smile
    Offline

    14
    ReputationRep:
    (Original post by Adhsur)
    Can anyone please recommend something she can do in her spare time? It's very difficult I know, but we have to think of something fast before she gets bored and depressed or we have to devote the whole day to sitting next to her talking! Will anything be able to distract her from requiring all this attention?
    Not sure what has been suggested previously as it's about 90 posts long already,a nd I'm trying to post and look like I'm hard at work, so forgive me if these suggestions have been made already.

    You could try contacting somewhere like the Millenuim Volunteers or similar to see if you can find someone with the time and caring nature required to help keep your sister mentally stimulated. I have a friend (now a first year medic at Leeds) who did something similar with a mentally and physically disabled girl. Invovled accompanying her to brownies, taking her swimming, reading to her etc.

    Might also be worth looking into local support groups and respite day care centres, if for no other reason than to get ideas on activities that will interest your sister and may even be fun for all of your family.

    I did a lot of my research for my DPhil out at an MRC facility in a place called Harwell - in there was a DMD research group there. I'll see if they can suggest any good starting places for activity ideas....

    HtH

    Fx
    Offline

    14
    ReputationRep:
    also see if the winged fellowship can help out...

    http://www.wft.org.uk/main.cfm
    Offline

    1
    ReputationRep:
    (Original post by Pencil Queen)
    http://www.bbc.co.uk/dna/h2g2/alabaster/A899553

    might not be much use but the picture always makes me smile
    <is thinking of taking up chair tap dancing - far less strenuous than standing-up tap dancing>
    • Very Important Poster
    • PS Reviewer
    Offline

    21
    ReputationRep:
    Very Important Poster
    PS Reviewer
    (Original post by Weejimmie)
    Hold hard, Adhsur! Having muscular dystrophy does not mean someone has "limited brain capacity". It is not an illness, but a set of symptoms caused for a variety of genetic reasons. Stephen Hawking has one type of MS, for example.
    MS = Multiple Sclerosis and is to do with de-myelination of nerve cells
    MD = Muscular Dystrophy is something completely different and there are many different types (http://www.mdausa.org/disease/40list.html ) one of which (ALS) is the condition that effects Stephen Hawking

    I don't think that Adhsur was ever implying that MD automatically effects learning capability - but in the case of her sister (directly and indirectly) it has.
    Offline

    1
    ReputationRep:
    (Original post by Pencil Queen)
    MS = Multiple Sclerosis and is to do with de-myelination of nerve cells
    MD = Muscular Dystrophy is something completely different and there are many different types (http://www.mdausa.org/disease/40list.html ) one of which (ALS) is the condition that effects Stephen Hawking

    I don't think that Adhsur was ever implying that MD automatically effects learning capability - but in the case of her sister (directly and indirectly) it has.
    Sorry: I meant MD throughout, but, as you may have noticed, I'm not a very accurate typist. Error corrected.
    There is a tendency for people not to know properly the ability and potential of disabled people, even- especially?- members of their own family. That is why I suggested going through the hospital. Being bored is often a sign of unused abilities, not lack of ability.
    • Very Important Poster
    • PS Reviewer
    Offline

    21
    ReputationRep:
    Very Important Poster
    PS Reviewer
    (Original post by Weejimmie)
    Sorry: I meant MD throughout, but, as you may have noticed, I'm not a very accurate typist. Error corrected.
    There is a tendency for people not to know properly the ability and potential of disabled people, even- especially?- members of their own family. That is why I suggested going through the hospital. Being bored is often a sign of unused abilities, not lack of ability.
    True

    Although the hospitals are not always much help

    My other half was diagnosed with a form of MD (Friedreich's Ataxia) when he was 16. He was essentially told the diagnosis and that there was no cure/treatment and heard nothing from the hospital again. It took his sister arranging for genetic testing before her marraige to get back into the system - 10 years later (via a genetic nurse, geneticist, neurologist consultant, neurologist, cardiologist) the 4th of which arranged for hubby to finally be given a OT (which resulted in hubby getting his 3rd wheelchair partly paid for by the NHS).

    It's surprisingly easy to fall out of the system
 
 
 
Poll
Who is most responsible for your success at university
Useful resources

The Student Room, Get Revising and Marked by Teachers are trading names of The Student Room Group Ltd.

Register Number: 04666380 (England and Wales), VAT No. 806 8067 22 Registered Office: International House, Queens Road, Brighton, BN1 3XE

Write a reply...
Reply
Hide
Reputation gems: You get these gems as you gain rep from other members for making good contributions and giving helpful advice.