6 months ago I lost the majority of vision in my right eye, 5 days ago the same happened with my left leaving me with next to no vision and 2 young children...(self.Blind)
submitted by Disney-Roo
The hospital is still confused from my right eye definitely have no answers for my left. They've not given me ANYTHING. A % of vision, and 20/ of vision, a diagnosis, even the slightest idea. Mri, c.t, bloods, lumbar puncture all normal.
I'm in the UK, is anyone able to advise me what is available aid and help wise for myself and help with my 2 children, a 1 and a 3 year old.
Today was the first school run and I broke down when I got to nursery, it was horrendous, I can't see the curb, people's drives, dips in the pavement, my 3 year old. I struggled crossing the roads. Then on pickup I had to move out of someone's path which led to pram going of the curb in the bus stop and toddler falling on his bum and me losing sight of him right next to the main road.
I literally cannot live like this. And I don't say that lightly.
RogueCandyKane16 points4y ago
Where in the uk are you? First off - you need long cane training. Your local authority is obligated to provide it however there’s often a waiting list and you need it now. Your local authority can outsource it to a provider such as Guide Dogs Association who do this as they have fully trained and funded mobility instructors and it’s a source of revenue for them. Other charities also donir. It should be free to you. That’s the first step. The school run with a long cane is totally doable. I am registered blind and I do it twice a day with either my cane or guide dog - I find it relatively stress free. I started using a cane when my daughter was 2yrs old and my guide dog when she was three. They are life savers. Also, go into the school or nursery and ask for an appointment with the head. Ask for a care plan to be written up for you so that staff have a guideline o. How best to support you. Tho gs you might want to put in it include They locate your child, coat and bag and hand them over directly to you in person They email any letters Home to you, They inform you of any signage that may be up on walls that you may miss.
Ask your local authority for a full care plan that undertakes every aspect of your life. It should be carried out by a social worker with knowledge of sensory disabilities. You need support with daily living tasks, personal care and social inclusion. By personal care I mean knowing that clothes are clean and matching, no toothpaste on tops etc, not actually getting washed and dressed. They can provided a PA in your care plan to assist you for a few hours a week - and maybe a cleaner to help you with household chores. Apply for PIP if you haven’t already. If you aren’t working you need enhanced ESA.
I promise you it is all doable and you will find solutions. Yes it’s totally overwhelming and devastating right now but taking some of these steps will get you going in the right direction. It’s all daunting so I definitely recommend contacting charities such as RNIB, Action for Blind People, Henshaw, Galloway or whoever is your local organisation, and also the Citizens Advice Bureau to help you with all the logistics of getting support put in place, You are not alone, and you will be ok. Sending you a Reddit hug from one visually impaired parent to another
Disney-Roo [OP]4 points4y ago
Thank you for your long reply! It means so much, honestly, I cried.
I have a few questions in addition to what you've said.
Can a cane been used with a pram? My youngest is only just turned one (last month) and I use a buggy board for the 3 year old. I have a bugaboo so it's a bar handle and easy to push one handed.
I'm not registered blind and have been told it's very very hard to get certified, do I need either or both to apply for any extra financial aid?
I'm currently on income support, but 1st November my partner is moving in, however he works 4 days on 4 days off and when he is working it's 6.30am till 8.30pm so for those 4 days I am essentially a single parent.
I have spoken to social services and Essex care limited for rehabilitation and sensory training, however for both theirs around a 2-3 week wait, should I call guide dogs too?
Is a dog something that would be available do you know? Would one be able to aid and guide the pram?
My brothers a graphic designer and has made a sign for the pram from perspex that indicates I'm a visually impaired parent with the visual impairment sign.
So I was discharged from the hospital with I kid you not a shrug and a "you just have to get on with it." This has caused a great deal of stress and anxiety, making me feel completely lost and on my own, and essentially lost. Would you put in a formal complaint?
Thank you for your time again!!
RogueCandyKane3 points4y ago
My word, you’ve been let down pretty badly. I’m probably going to answer in the wrong order!
Two to three weeks isn’t a bad wait at all and I doubt guide dogs could do it quicker. However... honestly, I’d ask them to come and visit you in an information visit at home. They are really knowledgable about all kind of things and will help you with working out if a guide dog is the right way for you to go, Yes, it’s possible to use a cane with a pram or buggy, and a guide dog too, I think the sign that you’ve had made is a brilliant idea. One thing I did in very crowded places was place my cane on top of the buggy so it pointed forward and was very visible. Then I ploughed on making lots of loud excuse me’s! When people turn round they see the cane and although they may be startled, they are t going to blame you. The cane explains it. It’s like a very fast communicator that lets people know to move out of your way. Benefits wise, please get in touch with your local citizens advice bureau and ask them to help you work out which way you should go, and help you fill out forms if need be. Most of the charities I mentioned also have Welfare Officers who hare experts in this field and will help you with eligibility and forms. With regards to being registered blind - it is absolutely not difficult to be registered blind. It’s a simple matter of your eyesight being assessed by a consultant and they have a criteria whereby they say you are Sight impaired or Severely Sight Impaired (SSI). They state this on a firm, you get a copy, and a copy goes to your local authority. You need to go to your GP and tell them that you need a referral to an Eye Consultant as a matter of urgency, because you’ve had a big deterioration in sight and it’s quite probable you need to be registered as sight impaired. This registration is a gateway to s lot of other support, including getting a concession art travel pass. Lots of things that my brain can’t remember right now. Hope I’ve not missed anything out
Derpette42207 points4y ago
In the UK the Royal National Institute of the Blind is the primary low vision charity, Vision Support is another. You'll want to treat your vision and your health separately, the hospital probably won't be able to help you live a more accessible life. Be adamant with your doctors about getting answers and running tests, you may need genetic testing and various scans to find the problem. Outside of that, you'll need training and assistance to make your life easier. A cane or guide dog would make navigating easier, the first step would be visiting RNIB or calling them to arrange a meeting.
Disney-Roo [OP]3 points4y ago
So things are available to me even though I have not been certified or registered legally blind/visual impaired?
Derpette42203 points4y ago
You'll just need your prescription, no registration. An optometrist or family doctor will be able to find out your acuity in less than an hour.
ravenshadow20134 points4y ago
just a quick Google search but I think these people would be a good start. Have you hear of the Royal National Institute of Blind People or RNIB?
Disney-Roo [OP]3 points4y ago
Yes I have phoned them, they're going to call me back in 1-2 weeks.
ravenshadow20132 points4y ago
they will take care of you
CinnamonDonkey3 points4y ago
Please talk to your doctor about LHON. Leber Hereditary Optic Neuropathy. My son was diagnosed very recently. It took ten months to get the diagnosis. He went through a lot, including some of the things you mentioned before seeing a genetic specialist, who took a blood test. Especially if there is anyone you know of on your mother's side of the family who has ever had vision loss. He started with sudden painless loss of vision in one eye, shortly followed by the next eye.
Disney-Roo [OP]2 points4y ago
Just done a reallllly quick wiki read and image search and it is nothing at all like my vision loss, a tiny part of my central vision is all I have. I've had -a lot- of tests, scan, electrodes etc on my eyes, so many field tests, so many bloods, almost daily for 2 weeks, I've been to a specialist hospital in London and had my brain fluids sent to Oxford, I would hope somewhere along all that someone would have tested. I go back in 6 week and I'll mention it then though
CinnamonDonkey2 points4y ago
I am so sorry about your situation. I cant imagine how terrifying it must be. Especially with little ones. I truly hope you find the help you need. I am in Canada, so unfortunately can't offer much advice. I can tell you though, that you will find ways to adapt and I am sure that there will be support in your community. I wish you all the best.
Disney-Roo [OP]1 points4y ago
Thank you!
Disney-Roo [OP]1 points4y ago
Thank you! The only thing in my family, my mum's side, her cousin and aunty have the problem when their field vision slowly deteriorates?? But I will look into this! Thank you again
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