[blindkid] Explaining blindness to a child
Doreen
doreenproverbs3 at bellsouth.net
Thu Sep 16 22:31:17 UTC 2010
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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