visual impairments..

[chuck]

hey all,

Just wondering if there are any parents of visually impaired babies/children out there??

I have a condition called Aniridia and theres a 50/50 chance that bubba will get it too (its genetic) and although my vision is good I'm one the extreme rarities for this genetic condition Aniridia usually leaves people legally blind..often from a very young age.

How have others coped with bringing up a child with visual impairments?? How do nurseries cope with special needs?

 

[chuck]

So no one then?

 

[Snuggle2]

I hope my reply might partly help you.
I am Mum to a 25 year old special needs daughter. One of the issues of my daughter's disability is a genetic condition of the retina - Lebers Amaurosis. In simple terms, it's the reverse of Retinitis Pigmentosa, because her central vision is almost non-existent now.

When she was conceived, her Dad & I had no idea that we both carried the same defective gene. Having said that, we are currently awaiting results from the geneticist, who believes that it may be a damaged chromosome, rather than a faulty gene.

At times, life has been very difficult and my daughter does get very frustrated, even now. It hurts when she has to ask what colour clothes she has in front of her, to choose from. She has few choices in that respect, as she relies on others to choose for her. As she has grown up, she wants more and more, to take part in things, but she has other restrictions, apart from her very limited vision. She is registered as partially sighted.

My one suggestion to you, would be to consider asking to see a geneticist. You may well be surprised at how much advice can be obtained. It would certainly give you a greater insight into your chances of having a visiually impaired youngster.

If I can help in any other way, I will certainly be willing to try.

 

[hollie]

My 4 month old son was diagnosed with Congenital Nystagmus and Ocular Albinism yesterday, I am a carrier for both and any boys I have will have the condition. We have been offered lots of help with regards to finding him playschools/main stream schools when the time comes, and also help for him now, they will come out and teach us how to play with Alfie and to stimulate his vision, also how to adapt to life with him and what its like being a partially sighted person.

 

[chuck]

We're going to see a genetic counsellor sometime in the next few months but we arent having any prenatal testing - its not worth the risk really.

I'm hoping they'll be able ogive us some advice, I know my Mum will be good as she dealt with having to put contact lenses in me when I was 4 months old and having to teach me to see!

 

[hollie]

We didnt have any tests done either as we knew Alfie would have these problems. Alfie is having to wear glasses as of tomorrow when he gets them, and we had to register him as having a disablilty to get the help from the authorities, not that we mind if it helps him.

 

[ChloeRobinson]

My sons don't have a visual impairment but my cousin who is now 19 had cataracts in both eyes, his left eye cant see from and limited in the right and he wears very thick glasses. The support he received through out school was great for him and they offered a wide range of visual help for him. He has also been cleared to drive which is also great and I asked him if he had any problems growing up. He said he had pretty much a normal life, sure somethings were a little hard but he felt normal. I'm not sure if this will help in anyway but I hope it does.

 

[amylw1]

not quite on the same line but my 3yr old has a squint and is ver short sighted. i have battled for over a year to get help and get it corrected.

he now has glasses and a patch he has to wear daily for an hour. the problem with him is that no-1 at playschool wore glasses ad he is the only 1 starting school in sept that has glasses and he is worried that they will be nasty to him - THEY WONT!

its strange because i have perfect vision, BUT my parents and sister all have/had glasses and so did my grandparents.

 

[supermum7]

my daughter was born without eyes 20 years ago so has no sight at all.She always attended a special school from the age of 4,it was a fantastic school.when she was a baby we went to a child development centre once a week.she is now at a college for the blind and is doing very well,i am so proud of her and miss her so much as she is now living away from home.

 

[Pink Sunshine]

Hi. I am new to this site and I just read your post. I hope it isn't too late to reply. I have RP, night blindness, nystagmus, and cataracts. I am now TTCing. My doctors say I have a 25% chance of giving it to my children. I can tell you how I have coped and maybe that will help you. I was born legally blind. I only have about 10% of my sight. At this moment my face is about 6 inches from the computer. Things have always been difficult for me. I can't drive, so I get annoyed when I can't go somewhere quickly. So, that is why I am very organized and have everything in my day planned. I do things differently from other people, usually slower, but that extra time needed is added into daily plans. Even though I am different, I have never expected myself to wallow in self pity. I am from a small town in Tennessee (USA) and I moved to Los Angeles, alone, to get my Master's degree. I graduated with honors. I moved to Japan, alone, where now I own my own school. My adorable husband picks me up every night, because it's dark and I can't get home. I have awsome friends who look after me. I never thought that I should do any less that "normal" people. Sometimes I do get angry at myself for not being able to do everything I want to do. I have always wanted to drive down the coast of California in a convertable and my sunglasses on. I have always wanted to be able to play volleyball. But, I can't. The cool thing is, I can do things that other people can't. I can hear as good as any dog! and I have a good understanding when people are a little different.
How my mother coped-lots of tears, lots of prayers, lots of worrying. My mother has been supportive of me and my adventures. Of course she worries and hates that I live so far away. But, she know I have a good support system.
If my child has RP I hope to love them no matter what. And I will know that he/she will be just fine. They will learn how to do things in their own way.

Good luck and take care.

 

[keystone17]

My son is visually impaired, its hard on him and me. We get by though.

 

[Aftereight]

On Wednesday one of my twin baby girls was diagnosed with a cataract in each eye, with the right being much more dense. However the GP incorrectly made the referral and we had to wait 10 weeks for an appointment with the Opthalmologist, despite going back to the same doctors and asking to expedite the appointment, and on Friday he told us because of the delay its likely that our baby girl would have much worse eye sight now than if the doctor correctly referred us and the cataract was removed at 10 weeks instead of 20 weeks.

So on Thursday we have surgery scheduled to remove the cateract in the right eye; and in two weeks time providing all goes well another operation to remove the second cataract.

So I'm very worried on one hand because she's undergoing surgery and relieved on the other hand that she might be able to see more after the operations.