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22 year old starved of oxygen at birth...

(20 Posts)
stressedbeyond123 Sat 27-Aug-16 00:28:46

Hi - my DSD was starved of oxygen for 10 minutes at birth. As a young child she was ok, but as she got older problems became apparent (so i am told). I only came into her life when she was 13 so only going on what i've been told.
The issue is, seeing her today as a 22 year old it seems so glaringly obvious that there are problems with her....to name a few

1) there only 7 types of foods she will eat - won't entertain other food due to being too green, looks hard, used to like it but now i don't.....
2) can't tell the time
3) "childish" behaviour - watches a lot of kids programmes/cartoons etc. Won't entertain watching age appropriate programmes
4) no ooomph in her at all - will lie in bed watching kids programmes all day if left alone
5) has to be reminded everyday to clean teeth, have a shower
6) no social graces, can often be inappropriate or laugh at the (very) wrong time
7) poor speech, poor understanding of what is being said, unable to remember or undertake/understanf simple instructions said only a minute or 2 ago
8) can't cook at all or do the simplest of tasks like make a cup of tea etc

What worries me is she is now an adult. She has finished college and is expected to go out into the big wide world, get a job etc. She is going to be expected to be like a normal 22 year old and bless her heart, she just isn't.

I have spoken with my partner about it but he finds it very difficult to accept there is a problem - we have had many arguments as i make her do stuff to learn but he wants to protect her, which i completely understand, and does nearly everything for her to save her struggling.

I'm worried about her working as i just can't see her coping. She has no concept of time at all and given that it takes her 10 mins to butter toast, i can't see many workplaces tolerating her slowness.

I'm sorry the above is all jumbled but i find it very hard and frustrating to help her as i am not her parent.

I want something put in place to help her in the world, to help her be more independent and to help her think for herself. She has no problem solving abilities at all. She once rung us as she was hungry, her mother was out shopping, she couldn't get hold of her and didn't know what to do. The thought of getting something to eat or cooking for herself never entered her mind.

What can i do to help her? I know there are systems in place for young children with learning difficulties etc, but what about adults? I think it would make life easier for her to have some help and if she went for a job interview she could say i have a, b, or c and these are my abilities. I think then prospective employers will be more tolerant and undertstanding which will do wonders for her confidence

Sorry for the long post and thanks in advance for any suggestions/advice xx

DollsHouseTales Sat 27-Aug-16 00:35:30

So she has got to the age of 22 without ever been assessed for learning disabilities? Her parents have never noticed her learning disabilities? Her doctor, her teachers, her friends?

If she can't make a cup of tea at 22, how has she managed to do anything at college (literally, anything - read a book, make notes, let alone pass an exam or complete coursework?)

WatchMeSoar Sat 27-Aug-16 00:47:18

In my experience, she needs routines, lists and someone to call if she is overwhelmed, and repeat.
If she can work then support her to do so, even if it dforsnt

stressedbeyond123 Sat 27-Aug-16 00:48:14

She struggled but was determined to do it as she really wanted this, that's why she finished at 22!
She is capable of doing some things, just not a lot of everyday things - i perhaps haven't explained it very well. Apparently the school marked up in their records that there were "issues" but nothing was ever said to her parents. It was only after she had been in college a year or two that it came to light.

stressedbeyond123 Sat 27-Aug-16 00:50:28

Sh doesn't have any friends sadly, she is not very comprising and its her way, doing her thing or not at all. Despite encouragement and explanations about compromise in friendships, these have never flourished.

stressedbeyond123 Sat 27-Aug-16 00:52:38

She is very good reader, reading is her biggest passion apart from watching tv. I've often spoken to her about her books and asked her to tell me what they are about to get her talking and understanding them - she struggles with it as the information is in her head but she finds it very difficult to express it.

WatchMeSoar Sat 27-Aug-16 00:55:47

Sorry posted too soon.
Even if it doesn't work out.
Teach her to make tea.
Don't underestimate her because she doesn't adhere to the social norm.
With support she will be ok

stressedbeyond123 Sat 27-Aug-16 00:57:01

She has extra help with exams - she has a "reader" who reads the questions to her and she had more time to do the exams. School wasn't a good place for her due to bullying etc and when she started college she blossomed and we are so proud of her for that - she fought really hard to do the course she wanted and we naively thought that we were wrong about her. We thought she didn't do well because, well, she just didn't like it but we now know that's not the case.

I am working with her on telling the time - i give her little jobs to do to help her understand the concept....like can you help with the hoovering, it needs to be done in 10 mins, that type of thing.

WatchMeSoar Sat 27-Aug-16 01:00:18

I'm sorry, maybe my post was unhelpful, I based it on my own experience.

stressedbeyond123 Sat 27-Aug-16 01:01:54

Watchmesoar, thank you!
I tell her all the time she is a beautiful, caring, kind young lady - she has so many amazing qualities. She often calls herself stupid when she gets frustrated and i remind her that she can do whatever she puts her mind to, she just has to put in the effort and try it, as we can't do that for her x

Bagofmashings Sat 27-Aug-16 01:02:11

Does she think / know she has difficulties with some things? And would she be able to explain them to her GP? That could be the best was of getting her needs assessed & help put in place. As an adult she'll probably have to be the one to ask

stressedbeyond123 Sat 27-Aug-16 01:07:13

To be honest, i"m not really sure. She gets frustrated sometimes, but she really is in her own little bubble and love her, she's very happy there. She's not bothered about working, having friends, going out etc - i think its more how we feel she should be acting and knowing its not the same as others her age. She genuinely sees no problem at all in how she acts/behaves x

lazyminimoo Sat 27-Aug-16 01:15:09

why did she want to go to college of she's not bothered about working ?

stressedbeyond123 Sat 27-Aug-16 01:19:48

When i say not bothered about working, its not that she can't be a***d, its that the idea of it never occurred to her until we told her that now college is over this is the next step - like i said she has no concept of what to do or the natural progression of things

MindSweeper Sat 27-Aug-16 01:32:58

I think you're a very nice person to be concerned about this and aware there's a problem

I think given she's an adult it may be hard to get her help, because she may not accept it if she doesn't realise there's a problem. It may just be a case of her making her own mistakes and coming to the conclusion herself that she may need help, or she may flourish. It's difficult to tell.

You could start with www.bild.org.uk/information/faqs/ and they may be able to advise you or

CAF

www.cafamily.org.uk
Free Helpline: 0808 808 3555
Textphone: 0808 808 3556
Email: helpline@cafamily.org.uk

Enable

The Helpline number is 0300 0200 101 or you can email enable@enable.org.uk

The SEN National Advice Centre

Help is available through their helpline 0808 808 3555, or post a query on Contact a Family's Facebook or Twitter sites and a SEN adviser will get back to you. Or by email: helpline@cafamily.org.uk

I'm sorry if they aren't much help but it's the only thing I could think of flowers

Bagofmashings Sat 27-Aug-16 08:32:42

flowers I think you're wonderful for wanting to help too. As as SM myself I understand how hard it it to be so involved with a child/ young adult and not being able to help them in the way you would your own. She's very lucky to have you flowers

RaeSkywalker Sat 27-Aug-16 08:39:49

I think the main problem here is that your partner and his ex don't seem prepared to acknowledge the issues. You can't hope to address this alone, it won't work.

What are your partner and his ex doing/ saying about her finding a job?

You sound lovely flowers

stressedbeyond123 Sat 27-Aug-16 09:19:38

Its a difficult one - when i speak to DP about it he acknowledges that things are more difficult for her, but it scares him to think there may be a bigger issue here, which i totally understand. If i push to hard he just closes down.

She really is the lovliest girl you could ever wish to meet. She is wonderful with our DD who is 5 - she has so much patience and understanding with her. She thinks up fabulous games to play with her and spends ages reading with her etc.

I just want her to realise her potential and that even given whatever difficulties come her way she can do this, she is stronger and better than she gives herself credit for....sadly i think she needs more professional assistance than what we are giving her x

2old2beamum Sat 27-Aug-16 16:36:29

My 2 DDs have Down Syndrome, both went to mainstream school and took 3 GCSEs low grade results 2 Ds and a C each we were delighted! BUT totally unable to care for themselves. They may be bright academically (in the realms of Down Syndrome) but socially poor. We are lucky to have a label that defines them. In my opinion as an old midwife 10 minutes starved of oxygen is a long time but she sounds a delightful person and you have done well. Cannot offer any advlce but it does seem she has no behavioural problems.
Keep the good work up she is lucky to have you.
Good luck

gingeroots Mon 29-Aug-16 20:39:12

what a difficult situation and how kind you sound .

I wonder if there might be any helpful suggestions over here
www.mumsnet.com/Talk/special_educational_needs

flowers

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