7mo being registered blind

[maisie78]

My little girl has a condition called Incontinentia Pigmenti. It's rare so not expecting anyone to have heard of it. It's primarily a dermatological condition, mostly found in girls, that affects skin, hair, teeth and nails. In rare cases it can affect children neurologically and/or affect the eyes. In my lo's case the condition has ravaged her eyes. She lost her sight in the left eye pretty early but we have been fighting to save her right eye with laser surgery. We went for a check up yesterday and our consultant has had to admit defeat and we have signed the forms to have her registered blind :'(

I'm still feeling a bit shell shocked so not even sure what to ask except for anyone else with a blind child to get in touch. I need to hear experiences from parents that have had/have a blind child because, honestly, I have no idea what the future holds.

Thanks in advance x

 

[Shezza84uk]

Hey hun I have no experience and didn't want to read and run but as a mum to a special little girl I would encourage you to be strong contact your local council parent department and ask for the list of places for children who are partially sighted or visually impaired they can be very supportive being with others who can relate, I hope it all works out as well as can be Xxx

 

[Janers]

I'm sorry you are going through this, I don't have any magical advice to make it better, but just wanted to reply and give some encouragement. Stay strong, and that little girl is lucky to have such a great mama!

 

[sun]

I have no experience or advice to help, but have lots of hugs for you and your girl.

 

[Septie]

Oh This must be such a shock to you!
No experience, but did want to say that one of my colleagues has been blind since his teenage years. He got a doctorate at a very top (world class!) university and is a very productive member of society, with a (seeing) wife and two kids. He is highly respected in his profession.
As to your daughter, she will never know any different, so she won't feel the loss. Her other senses will compensate. And, as my colleague's example shows, the sky is the limit!!

 

[6lilpigs]

Again no experience with this but wanted to offer support xxx Look into all the schools available where all the children will be the same and so she wont feel different. You may find through her that you start discovering things afresh!

 

[supermum7]

hi i am so sorry to here about your little girl.i am a mum 0f seven the oldest being 23 and the youngest 2 in october.My second child ( daughter Amy) was born blind 22 years ago.She was born without her eye balls.She is doing fantastic, she went to a school for the blind in Liverpool until she was 17 then on to college , it has been hard work with her at times and you have to push for things but i am so proud of her.if you need any help or advice please message me xx

 

[maisie78]

hi i am so sorry to here about your little girl.i am a mum 0f seven the oldest being 23 and the youngest 2 in october.My second child ( daughter Amy) was born blind 22 years ago.She was born without her eye balls.She is doing fantastic, she went to a school for the blind in Liverpool until she was 17 then on to college , it has been hard work with her at times and you have to push for things but i am so proud of her.if you need any help or advice please message me xx

Wow it's so long since I wrote this I didn't see your reply. Thank you! It's so nice to read positive stories.

One of the things I have been getting worries about recently is that we have been warned that Gabriella is now more at risk o. Autism due, I assume, to the lack of visual stimulation in terms of learning about the world and social interactions. Did you have these problems with your daughter? How did you overcome them. I have tried mother and baby groups but I just don't think they are right for us as she just seems bored.

What made you decide on a special school, I assume it was a blind school? We have seen a residential one in Worcester which would be from 11 yrs but I really don't know what to think. It's over an hour from where we live and I just couldn't imagine her being so far from me. Do you think your daughter did better for being around other blind people? I do worry about how I am going to teach her to be blind in what is essentially a sighted world.

I hope you don't mind all the questions, I have loads more lol

 

[maisie78]

hi i am so sorry to here about your little girl.i am a mum 0f seven the oldest being 23 and the youngest 2 in october.My second child ( daughter Amy) was born blind 22 years ago.She was born without her eye balls.She is doing fantastic, she went to a school for the blind in Liverpool until she was 17 then on to college , it has been hard work with her at times and you have to push for things but i am so proud of her.if you need any help or advice please message me xx

Wow it's so long since I wrote this I didn't see your reply. Thank you! It's so nice to read positive stories.

One of the things I have been getting worries about recently is that we have been warned that Gabriella is now more at risk o. Autism due, I assume, to the lack of visual stimulation in terms of learning about the world and social interactions. Did you have these problems with your daughter? How did you overcome them. I have tried mother and baby groups but I just don't think they are right for us as she just seems bored.

What made you decide on a blind school? Is it local to you? We have seen a residential one in Worcester which would be from 11 yrs but I really don't know what to think. It's over an hour from where we live and I just couldn't imagine her being so far from me. Do you think your daughter did better for being around other blind people? I do worry about how I am going to teach her to be blind in what is essentially a sighted world.

I hope you don't mind all the questions, I have loads more lol