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Original poster

My DD is blind- ask me anything

15 replies

chocolateoranges · 26/04/2019 19:04

My 13 year old daughter is blind/visually impaired. She had some sight in her left eye and only light perception in her right up until the age of 10 where she lost her remaining vision and now only have light perception

OP posts:

Whatistheworldcominto · 26/04/2019 21:17

How did you discover DD had a sight problem? How old was she?

Original poster

chocolateoranges · 26/04/2019 22:24

I first started noticing her eyes not focussing very well and her eyes shaking slightly when she was around 3 or 4 months old. At 10 months she was diagnosed with retinal distrophy and then specifically LCA

OP posts:

Shelbybear · 26/04/2019 22:29

That is awful. I'm really sorry.

How does she manage day to day? Is she at mainstream school? Does it make her sad she can't see, especially given she did have some sight previously?

Original poster

chocolateoranges · 26/04/2019 23:09

In day to day life she has her struggles but she's adapted well in the last few years and it's become normal for her. She is in mainstream school. Once her sight had completely deteriorated she was very upset and lost a lot of her confidence at first, it took a long time to build her back up again but she's doing well. It's often not so much being sad about not being able to see but rather having difficulty doing something or having less independence than if she was sighted

OP posts:

Isitweekendyet · 26/04/2019 23:12

That must have been so painfully hard for you all OP. Especially DD.

What a strong young lady you must have.

Does she watch the Youtuber Molly Burke? She is also blind with only light perception, if she is ever feeling despondent about her future, perhaps she's someone she could relate to?

Original poster

chocolateoranges · 26/04/2019 23:38

She watches her quite a lot, I've seen some of her videos too and her experience seems similar to DD's so it's nice she can relate to someone

OP posts:

AhhhHereItGoes · 28/04/2019 22:08

As a parent who is severely visually impaired it's lovely to hear from a parent who has a child with the condition.

Yes I really like Molly Burke on YouTube. :)

memaymamo · 30/04/2019 14:36

@chocolateoranges Do you have any friends who are blind, or groups you're involved with where she can meet other blind children?

How common is her condition? I'm assuming it's a genetic condition.

BentBaastard · 30/04/2019 14:43

What support does your dd get in mainstream school?

She sounds amazing!

Original poster

chocolateoranges · 02/05/2019 12:46

Do you have any friends who are blind, or groups you're involved with where she can meet other blind children?
Before DD i didn't know anyone who was visually impaired or blind but as she started getting older I started looking for groups or any ways she could meet children who were so she didn't feel alone. We're involved in a charity that does regular activities and she's made some good friends though that
How common is her condition? I'm assuming it's a genetic condition
Yes it's a genetic condition, it's one of the common causes for blindness in children but generally still quite rare
What support does your dd get in mainstream school?
She started learning braille in primary school, she has an assistant translate the work into braille and help her out in class and through out school when she needs it. She also uses technology quite a lot

OP posts:

farmergilesnomore · 02/05/2019 18:19

Forgive me if this is a very stupid question but if a blind person has a baby is she 'allowed' sole care of it or does she have to have carers present? I ask as I saw something on tv once about a woman who was losing her sight (her dh was profoundly deaf and worked) and they had carers all day.

T1nah · 02/05/2019 18:28

It must have been very painful watching your DD go through that. How have you managed to stay strong and positive for her?

AhhhHereItGoes · 02/05/2019 18:45

@farmergilesnomore sorry this isn't my thread but as a registered blind Mum and a blind DH with 2 kids I can say there's no definitive answer.

They tend to like a family member or friend to be around in the early days to help/advise. If they feel they are coping well (MW early visits and Health Visitor) they'll likely not be bothered about sole care.

Though sometimes it's nice to have extra help. I hope that makes sense.

farmergilesnomore · 03/05/2019 06:30

Thanks for that Ahh.

Iwantmychairback · 03/05/2019 06:41

Do you have other DC? If so, and they are sighted, do you treat her any differently?
Do you allow her out with her friends, shopping etc like any other teenager?
Would she qualify for a guide dog at her age?
Do you notice that she uses her other senses more than you do?
Sorry for all the questions!

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