UK Keratoconus Self-Help and Support Association

My son has autism and severe learning disabilities. He has Keratoconus in one eye, the other is very short sighted. We are winning the battle to get him wearing glasses outdoors but he's not very keen on them indoors. Because he cannot speak we are in the dark about what effect the disease has on everyday living. We have observed how difficult he finds moving about outside at night unless it is brightly lit, and also descending on rough terrain.Can anyone give me some practical suggestions on what they find helpful. I don't know anyone else with the condtion especially anyone with learning disabilities too. Our local society for the blind were not able to help. Christine

Hello Christine, and welcome to the forum.

I can't personally help you, but I've moved your post to where it is more likely to be seen quickly.

I know that we have a number of people who have children with Downs on the site, and I hope their experiences can help you.

Just a couple of questions to help things along: How old is your son, and whereabouts in the country are you?

I'm sure you'll get answers soon.

Hello Christine

How old is your son? We have a special needs school in the Parish where they have a number of children with learning difficulties often assiciated with challenging behaviours and some of them have visual impairment.

If your son is at school, they ought to be able to get him help from the sensory Impairment Team of your local authority (the name varies, but the job is consant).

If he has not started school, your GP ought to be able to make the necessary arrangements. Post school you might try just phoning them!

this must be the worst thing for a parent: not knowing what is going on for your son, and still being desp;erate to help

all the best

Andrew

Christine
If you send me a private message or e-mail me at anneklepacz@aol.com with your postal address, I can send you some booklets about keratoconus and learning disabilities written by Gill Levy who used to work for RNIB (with contributions from our Group). They describe the effects of KC very well and give useful tips.
Anne

Hi Christine
We also have a 13 year old son with autism. As yet his eyesight is ok.

I'm sorry I don't have any suggestions to add to the ones made but keep on encouraging him with the glasses. I would suggest maybe try and get some 'unusual' glasses that might catch his eye and that he might think are fun to wear, but he may be a little old for that!

Andrew

wheelnut and Christine

A fair number of people who come to the Scottish group have children with learning difficulties who are affected by KC. I expect that you are part of a far larger community than you think.

One of the men who comes to the Scottish group has KC himself and his son seems to be at risk of developing the condition. He was saying that he would not hesitate to accept a graft if it was offered for his son, although his ownexperience with grafts was not one of unqualified success.

I can only imagine what it must be like to watch allthis overtake a loved child. I find it easier to cope with things myself than to cope with things that affect the folk to whom I am close, or worse yet, the wife and family whom I love.

You are in my thoughts. Yours is a real heroism that is too seldom acknowledged.

Andrew

Hi

My name is Leigh Harris, I am worker for Adults with learning disabilities and Visual Impairments in Lewisham. I have worked with many adults with keratoconus and helped write the RNIB Keratoconus factsheet.

A link to it can be found here

If you email me at Leigh.Harris@lewisham.gov.uk with a contact number I am more than happy to chat

Leigh Harris

Good to meet you. You do important work, keep it up!

Andrew

Hello Leigh,

Thanks for sharing that document. It's a very interesting read. Even for those of us without learning difficulties!

d'accord!