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Carers UK Forum •Reading some of these posts is heartbreaking! System - JOKE
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Reading some of these posts is heartbreaking! System - JOKE

Posted: Tue Mar 20, 2007 7:46 am
by pasal3
Reading some posts makes me realise I'm one of the luckier ones really. To cut a long, long story short, I am a carer to my 18 year old daughter who has probable Macular Dystrophy, possibly Rod-Cone Dystrophy, both cause blindness. I have a 28 year old son with the same/similar condition. Both left school (mainstream) with no education, barely able to read, write or simple arithmetic. My son at 19 chose to go to a college for the blind, he started from scratch, after 4 years he chose a mainstream college (because they promised they could provide what he needed) so he could come home, he lasted 5 months. He went back to colleges for the blind for another 4 years, he is now a fully qualified gym instructor, I am so very, very proud of him, he has achieved so much. There has been plenty of upset, frustration, anger etc. over the years thanks to the way the English schooling system works, I know for my 2 blind children it was a total farce! My daughter left school with no education just like my son, but she did leave with something. Self-harming, low self-esteem, worthlessness, depression, wanting to die, the list is endless. Her vision condition is a deteriorating one, from about 12 to 16 being the worst years. These years were spent fighting with the school for them to meet her needs. They gave her someone to read for her, she wanted to read herself, and they gave her a magnifier, which the edu psychologist said didn't help with fluency and was a waste of time as it was only suitable for very small passages, i.e. one line questions etc. but she was given it and told to use it anyway. They gave her someone to write for her, she wanted to write for herself. After about 18 months they gave her a laptop, which she had no idea how to use and her TA didn't either, she did get to grips with it eventually but her TA never did! Her vision deteriorated to the point that they said printed material wasn't suitable anymore (because it was getting too big) and that she had to accept her TA would have to read to her all the time, so she asked to learn Braille and kept asking for nearly 12 months, in the end I was told she wasn't bright enough to learn it. I wrote to the head of edu saying they were NOT giving my daughter the chance to learn to read for herself and suggested they were discriminating against her, within 3 weeks she was learning Braille, she picked this up really quickly, it also helped her with reading printed material, THEY were all shocked by how she’d been able to achieve this. The year she went into year 10 was the year the discrimination act came into force in schools and HEY PRESTO, printed material in size 48 was provided and she was told to read it and her TA wouldn't read for her again, and several other changes were made. However, by this time her reading age was still under 8 years so she couldn't cope with it, she wasn’t ready to use Braille for everything, after all this was GCSE material. This is when the strain of everything started hitting her and she spent so many nights crying. Anyway, school got worse not better, I had a meeting with the school governor, head teacher and others, the head teacher asked me if I'd heard the saying children should be seen and not heard and to be a good mum I should just send my daughter to school and tell her that she just had to do as she was told because they we're the teaching specialists. The governor said more or less the same and also said, either shut up or put up, I was unsure what she meant, so me being me I had to ask, I was told by the gov, either let the teaching staff teach your daughter the way they know that is best for her or find her another school. We didn’t find another school but she didn’t turn up at that school very often either, she was under the doctor and was seen regularly by a child psychologist until October of last year. She still has problems but she’s getting better. Although, now trying to find a job is creating a whole new set of problems as connexions say they can’t find anything suitable for her, other than going back into education, which at the moment is a definite NO. Anyway, thanks to anyone who reads this and if you have children keep fighting for their needs because no one else will. I feel a little better for getting that off my chest but I could go on forever, probably enough to write a book, lol.
Best wishes to you all.

Hi Pasal Welcome. I think you qualify

Posted: Tue Mar 20, 2007 9:37 am
by Guest
Hi Pasal
I think you qualify for this forum I have read your post and you have your hands full your problem is no lees than any other on this site it's kind of you to think other's are having it worse than your self but yours is bad enough.
If you feel better by getting it off your chest please do so.
Hope you keep posting we may be able to help you as you may be able to give us some advice.
Yet again welcome to our forum.

Can relate to your posting

Posted: Tue Mar 20, 2007 10:31 am
by rosemary
Hi Pasal,

Reading your posting above opened a door to memories from over 30 yrs ago.
My brother was about 7yrs old before he was able to go to a school.He was only there a few months when mam decided he was not learning new things.Like you she was more or less told to let them get on with it,in fact they went so far as to say she should be grateful he was there at all.My mam was still fairly well herself at that stage and she actually took him out of the school.This was before computers in homes of course so her research was done in local library.I can remember doing my homework and mam sat at same table reading various books.
The authorities were more interested in threatening mam with prison if she continued keeping him at home than they were in helping.Mam told them my brother was no different to every other child that needed specialised help but that he needed an education and not just cared for during school hours which is what had been happening.
To cut a long story short,she continued her fight and enlisted the help of our local MP.After several months he was given a placement at a school in the next borough but a mini bus with escort picked him up and returned him home each day.It was at that school his education really began.It was where he learned his sign language to communicate further with us.It was the start of a happy and very productive learning process.
It was probably the start of my apprenticeship too.I watched and learned from my mam which is helping me to this very day.Whatever the relationship to our loved ones who are disabled/ill health,all we want is the very best for them.Never do we say they are different,that they deserve more because of their disability but we do say they have as much RIGHT as the next person to have their needs catered for.
Thank you for your posting Pasal,for sharing your experiences and we look forward to getting to know you and your family more.

Regarding your daughter Pasal, has she tried the RNIB for advice regarding employment.They have an office in Leeds that covers Yorkshire, Humberside and the North East and provide services to blind and partially sighted children and adults, parents, carers and the professionals who work with them.They can give Career and employment advice and job-seeking support.

Contact details as follows in case of any use to you.

Grosvenor House
Grosvenor Road
Telephone 0113 274 8855
Fax 0113 274 8800
E mail RNIBYorksHumberandNorthEast@rnib.org.uk

Hope this is of some help but it may be an avenue shes already tried.
Keep posting Pasal,I am sure there are many who have read about your children and can relate to what you have all been through.

Be strong
x x x

Welcome Pasal I've got some experience

Posted: Tue Mar 20, 2007 1:18 pm
by Guest
Welcome Pasal

I've got some experience with sight loss, albeit at the other end of the age spectrum, Mum is 86 and virtually blind due to glaucoma and macular degeneration - it's destroyed her mobility and she's totally dependent on my care now.

Reading your post is heartbreaking, your children deserve the same start in life through education as anyone else and the fact they've been so badly let down is disgusting.

We have had some great gadgets from RNIB, Mum can still just about play pontoon with her great grandsons thanks to their brilliant large playing cards - the little ones do cheat but it doesn't matter Image

Good luck and keep posting on your childrens progress.

Take care


Thank you for your replies.

Posted: Thu Mar 22, 2007 5:56 am
by pasal3
Thank you for your replies. I will keep posting and I will try to help with any posts I have a good understand of.
At the moment my daughter doesn't want to get in touch with anybody regarding her vision, all she can think at the moment is, everyone is out to tell her what to do, not to listen to her, she really learnt a lot at school.
Rosemary, yes I had the threats of prison and other threats too, in one of the many meetings I had in school the truant officer said I had to coax my daughter back into school, (believe me I'd tried so many different things to try to get her there) so I just asked him what I should do? He said he could get her into school everyday, I asked how, his reply was, he'd come into my house and literally drag my daughter screaming and kicking all the way to school, in uniform or pj's, didn't matter. I told him that wouldn't work, he asked why, I said because I won't allow you to do that, he went on to imply that I wasn't helping to get her back into school and I was encouraging her to stay home.
Anyway enough for now, and once again thanks.
Best Wishes to you all

for future reference if needed

Posted: Thu Mar 22, 2007 9:13 am
by rosemary
Morning Pasal3,

It was interesting to read your posting to see such similarities albeit they are quite a few number of years apart regarding threats made by professional people.

I understand about your daughter not wanting yet another person telling her what to do but I am posting the RNIB helpline in case at some point she feels ready to talk.
Our Helpline (telephone 0845 766 9999) offers an immediate, expert and confidential service. Many of our Helpline staff have sight problems themselves. They are trained to listen and to give reassurance and advice..
You yourself can also ring them if you need advice too.

Chin up
x x x

Good morning to you too

Posted: Thu Mar 22, 2007 9:34 am
by pasal3
Good morning to you too Rosemary.
Thank you for the phone number, I will have a good chat with my daughter later. I know she is getting very bored with nothing to do. She's just so fed up of being let down by the so-called professional people, but hopefully she may give the RNIB a chance. Even if it takes her a while to decide to contact them she'll know they are there ready to help when the time is right for her.

talking books

Posted: Thu Mar 22, 2007 9:22 pm
by normangardner
Hi pasal3, My late wife got talking books from the County Library, and the local newspaper on cassette from a local Charity for the blind (Galloways).
Perhaps a chat with your local librarian or social worker for the blind may be worthwhile.
The library is the working man's / woman's, university. There are all sorts of courses she could be doing at home without the 'school' environment blocking her enjoyment of learning. Image
best wishes normangardner

He said he could get

Posted: Thu Mar 22, 2007 10:19 pm
by charles47
He said he could get her into school everyday, I asked how, his reply was, he'd come into my house and literally drag my daughter screaming and kicking all the way to school, in uniform or pj's, didn't matter. I told him that wouldn't work, he asked why, I said because I won't allow you to do that, he went on to imply that I wasn't helping to get her back into school and I was encouraging her to stay home.
Wow, Pasal3!

Sounds to me like someone doesn't know his job. It would be illegal for him or anyone else to do what he suggests. And he should know that. End of story.

Hi all, I am so

Posted: Fri Mar 23, 2007 6:00 am
by pasal3
Hi all, I am so grateful for your replies and advice, thank you very much.
Charles I know you are right in what you're saying, but personally I think the chap who said he'd drag my daughter into school didn't really mean he would do it, I think he was just trying to scare me into believing he was allowed to do it, their scare tactics was something I just learnt to accept and got used to. And he knew me well enough by that time that he knew I wouldn't allow it. Another time (I really could write a book lol) someone from the education dept came to asses my daughter for her needs, he wrote his report sent a copy to the school and one to me. I thought at last we're getting somewhere, only to hear at the next meeting this report wasn't going to be taken into consideration because the assessor was new and didn't take advice from school first. The assessor told me that he had a slap on the hand for his report, but he would deny saying that if I mentioned it.
Best Wishes to you all