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Anyone with a visually impaired child?

Hi!  My husband and I are in the process of completing our home study.  We are hoping to commit to and adopt a 3yo boy from Eastern Europe who is blind.  I have been researching like crazy and reading books, checking out blogs.  I just wondered if any of you are raising a visually impaired child?  I would love to talk to you! 

Thanks so much.

 

 

Re: Anyone with a visually impaired child?

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    I am!  She's not completely blind yet, but will be eventually.  She has Alstrom Syndrome which has multi-organ involvement.  There is cone/rod dystrophy.  I've had her in early intervention since 10mo and started special ed half days in August.  She is globally delayed and receives PT, OT, Speech, vision teacher and Orientation and Mobility (at school).  We also do private PT, OT, and Speech.  I would love to answer any questions you may have.
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    My daughter isn't blind, but has been declared 'legally blind.'  She wears glasses and is able to see, but has very thin retinas, so there is a chance of becoming blind in the future.  We were referred by her opthamologist to a place near us called Vision Forward which has been a great blessing and resource for us.  I have heard of other programs similar to this in other cities.   I am happy to answer any questions as well, but I think Ekate09 would be a great resource!
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    imageEkate09:
    I am!  She's not completely blind yet, but will be eventually.  She has Alstrom Syndrome which has multi-organ involvement.  There is cone/rod dystrophy.  I've had her in early intervention since 10mo and started special ed half days in August.  She is globally delayed and receives PT, OT, Speech, vision teacher and Orientation and Mobility (at school).  We also do private PT, OT, and Speech.  I would love to answer any questions you may have.

    Thank you for responding!  How old is your daughter now?  The boy we're wanting to adopt has spent most of his life either in a crib or a swing.  He can't walk and is unable to pull himself to standing or sitting even.  He is extremely delayed at this point. 

    Do you have other kids at home?  How do you get her to explore?  I think that is going to be one of our big challenges.  Is the therapy helping a lot?  We were told he would need all of the therapies your daughter is receiving.  The private PT, OT and speech terapy - are they every week at different times or on the same day?  Just wondering how crazy your schedule would be.

    Have you started teaching your daughter Braille or are they doing that at school?  Does she go around the house like it's nothing.  I kind of worry about the kids leaving toys on the ground and him tripping over them.  I don't know if he has any vision whatsoever.  We have such limited information on him.  Thankfully, there is a woman who has met him that I've been talking to that has been such a huge help.

    How have people reacted to your daughter's vision and other issues? Has your family been pretty supportive? How do people react when you go places?  I hope I can deal with people's comments and stares with dignity (we're kind of used to some stares with 5 young kids) - but I think it might be hard at times.

    Do you think your daughter will be able to attend regular school when she's older?  Do you have a school for the blind nearby.  The closest one to us is 1-1/2 hours a way.  I guess those kinds of things we will worry about when we get to that point.

    I could ask you a million questions, but I'll try not to do that!  Thanks again for responding.  I would love to be able to talk to other people going through the same things as me.  Are you involved in any groups on facebook? 

    Thank you!

     

     

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    imagelaurding:
    My daughter isn't blind, but has been declared 'legally blind.'  She wears glasses and is able to see, but has very thin retinas, so there is a chance of becoming blind in the future.  We were referred by her opthamologist to a place near us called Vision Forward which has been a great blessing and resource for us.  I have heard of other programs similar to this in other cities.   I am happy to answer any questions as well, but I think Ekate09 would be a great resource!

    Thank you so much.  Feel free to answer any of the questions listed above!  What kind of things does Vision Forward do?  We're in north east Ohio.  I'll have to search and see what is available around us. 

     

     

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    I am not raising a child who is blind but I am legally blind expecting my first. I am also a Teacher of the Visually Impaired working with school aged children. Feel free to contact me with any use ruins. I live in MA so am unsure of resources in OH but would be happy to talk about my experiences. Good luck on the adoption
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