[blindkid] Explaining blindness to a child

[Doreen]

  Dina
we are just about where you are ... our 6 yr old was adopted from 
Guatemala and we brought her home at just under 2 yrs old. We just kept 
telling her that "princesses wear glasses" as she did not want to wear 
them at 1 yr old nor at 2 yrs old. Just about 2 yrs ago, we told her she 
doesn't see like us - simple but truthful. She surely would not have 
understood everything. In July, at her annual ophthal exam, her vision 
tanked pretty badly and her pressures are up. The doc has even suspended 
PE for her; I was asking about modified PE. But he and 2 other docs 
involved with her case are very worried about the drastic decline in 
acuity and the high pressures. I am also trying to "keep her on the 
ground" instead of on the swing at school and have told her no spinning 
as that gets her nystagmus going and gets her dizzy. With this latest 
development, I have just told her she is not seeing like she used to and 
that her doc is concerned about it. Because of that, he is doing more 
tests, which she HATES. I tell her I have to "obey" the doctor just like 
she has to obey me and her kindergarten teacher. I have told her that 
she has to be careful with banging things/people as it could cause her 
to go blind - and she hates even thinking about it.  I have tried to 
keep it short and simple. I know she is not getting much positive 
support from her TVI or O&M unfortunately.

She is predisposed to retinal detachment and glaucoma so her loss of 
vision is a possibility. We've already had one glaucoma scare and just 
recently, they were looking at her rods & cones (retinitis pigmentosa). 
It is scary for us to even comprehend it so you are right! At least you 
are in the right place - a wonderful forum for parents to share their 
stories.

Good luck to your family ... please feel free to privately email me if 
you wish.
Doreen



On 9/15/2010 2:08 PM, Mario and Dina wrote:
> My 4 year old nephew is rapidly losing his vision.  The doctors cannot figure out why other than his optic nerves are atrophied and it looks as though there is nothing to be done.  We are imaging the day when his sight goes completely.  We really need to hear from parents who have gone through this and can help us figure out how to explain it to him.  This has happened very quickly and we can hardly explain it to ourselves much less a 4 year old.
>
> Can anyone share their story with us?
>
> Thank you!
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