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for the Blind

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How can I teach my blind 3 1/2 yr old to communicate and walk

Hello
My daughter ,Natalia, is an identical twin with biliteral ROP stage 5, g-tube, SOD (septo optic dysplasia) feeding issues and sleep disorder. Ever since my daughter was born, I've been told numerous negative things about her and the possible outcomes of her developement. I've been told she had brain damage, will never be mobile and will never eat normally. Ever since I've been out to prove them wrong. My daughter had her first seizure this January and the MRI showed she had SOD. The nuerologist told us she was never going to be "normal" and by comparing both girls the difference was noticiable. My other daughter, Isabella has one bad eye and tested at a 5 year old level, how can they even compare two completely different individuals. Natalia finally started sitting this year and crawling. I had her eating a stage two baby food. After the seizure she has gotten very orally defensive and refuses to take solids. I am beginning to doubt myself, maybe my expectations for her are too high. She sings every nursery rhyme out there, tries to say the words and hums complete songs. She does know some word meanings like mama, no, sock, shoe and bye bye. When she hears words that are in certain songs, she starts to sing the song. She likes to make patterns on her keyboard. But I don't know how to teach her to communicate. It's like words are just sounds she hears. The therapists and I have been unsuccessful in trying to get her to stand and talk/ eat. She has the strength in her legs but has really no motive to walk. I'm alone with my girls all day, and it is hard for me to work with Natalia at times. My husband tries to help when he can, he works two jobs. My other twin is showing emotional behavioral problems. Waking up screaming, talking back and crying most of the day. I know it has alot to do with her sisters situation and how much attention is available.
Natalia will be starting school this fall and was placed in a handicap school were the majority of the children are severly disabled, wheel chair, down syndrom and severe mental disabilities. But because of her blindness, g-tube and seizures this was a school that can provide for her. I'm not to happy with the out come and i'm seriously thinking of keeping her home another year. I would like to send her to school walking or standing and being able to communicate. If anyone has any ideas, books or specialized therapies please contact me. Has anyone, tried music therapy?? How benefitial is it? thank you so very much for your time. I live in the Chicago area, and if you know of any other resource center for blind toddlers, besides the Light House, please contact me.
sandra
natalia74@sbcglobal.net

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Re:How can I teach my blind 3 1/2 yr old to communicate and walk



Have you tried teaching her sign language? The website www.wonderbaby.org had an article on teaching their son sign language as well as some book recommendations. Check out the site and I hope it's helpful to you.


Re:How can I teach my blind 3 1/2 yr old to communicate and walk



Hi,

Has anyone suggested to seek specially trained teachers who can offer intervention. They can possible offer educational options and therapy to help her develope. I wouldn't do this by myself. I'm sure in the school system in your area there are teacher for her.
My mom went to our local board of education to seek advicd for my education. In our city there are two anencies that have pre school consultants that make assessments and develope IPEs.
My friend was born blind. The doctors said she would have to be institutionalized because they felt she wouldn't develope normally. A nurse who visited my friend when she was an infant worked with her and taught the mother how to interact with her daughter. My friend is in her thirties, holds two Bachelor degrees, is independent, confident, intellegent, a super friend, spiritual, and a damn good singer! She aspires to be a singer. Perhaps your daughter may surprise the doctors; perhaps not. It depends on the therapy and the realistic limits. She'll teach you too; just like I taught my mom.
I wish you the best.

Elphie


Re:How can I teach my blind 3 1/2 yr old to communicate and walk



First, do not give into doctor's perceptions of your child's limitations. I am Deafblind, in my 20's, also use an enteral pump... and have a host of other problems.. but I'm still here! The recommendation of simply settling is the worst you can ever take... constantly challenge your daughter to expand her world, because we can turn out alright.

Regarding communication, some options can include buying a switch-style button which will say one recorded phrase (more, no, ect) and putting a tactile identifier on it. If she can make the connecction that pushing the button = getting something she likes, and uses it for that purpose, she IS communicating. You can find buttons like these at enablemart com- anywhere from 12-100+$

Another option is using signs. If her vision is bad enough, there are two ways to convey a sign. First, place her hands over yours while signing whatever word (say, 'milk'), and then, form HER hand into the sign while speaking the word (again, 'milk') and in the case, offer her some milk. This can be used to communicate a desire for toys, going up or down, ect...

Just some options to pursue.

Regarding walking/traveling.. buy her a cane, if you haven't already. Even if she just crawls, put it in her hand and have her use it to whack around things and interact with her environment. It might be the 'encouraging step' for her to explore the big world around her.

Reach out to local support. As a former chicago-person (schaumburg!) I can suggest you get in touch with the local NFB chapter- the ones in IL are listed at http://www.nfbofillinois.org/chapters.htm

Reach out online, too. The most active communities I've found center around livejournal- especially check out http://community.livejournal.com/blindpeople


Email me if you need anything. nahzee at yahoo dot com.


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