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for the Blind

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Daughter recently diagnosed legally blind have questions.

My daughter is 8 she is the oldest of my 3. Two years ago she was diagnosed witha craniopharygioma which means she had a tumor and a cyst in her brain growing out of her pituitary gland. They removed the tumor but could not remove the cyst. So 3 brain surgies later the cyst was still there filling up and they would drain it. It was streching out her optic nerves, now she is totally blind in her right eye and has 20% vsion in her left and its tunnel vision. Glasses will not help and there is no surgery that can be done. The doctor said if she has any head trauma she will become completly blind. The question is this. Do I send her to a school fo rthe deaf and the blind just in case to be on the safe side? So she can learn to read braille, and how to function in the outside world. Or do I send her to a public school and hope that they stick to the 504 plan and not stick her in special ed, because she is a bright girl. She was on the A honor roll all year last school year. I have many questions. Do I sign her up for SSI? What do I do? She has been through alot and there is more for her to go through, the tumor might have also stopped her for growing and many other things, so I just need input. My husband and I are trying to get stationed back home because there is a deaf and blind school there and also our family is there. It has been very hard to go through all of this without family support. I just need input. Thank you .

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Daughter recently diagnosed legally blind have questions.



I do wish I could show you my Squidoo sites about my legally blind husband. As I read the other comments here, I just had to add one funny story. People seem to assume that if you cannot see, you cannot hear or think for yourself. My favorite is the waitress who yelled at the table "and what will HE have?" Believe me, a sense of humor will serve you and your daughter well. People simply do not think before they speak. Love and prayers to you both!


Daughter recently diagnosed legally blind have questions.



My husband was diagnosed legally blind over 20 years ago - our children were 17 and 11 at the time.
I think the best advice anyone gave me was not to "over-do", but to let him learn to do things himself. He has a super positive attitude -always says "it could be worse" and that is a fact.
I cannot advise re public or "blind" schools since I have not experienced that decision, but I did want to tell you that hubby is a happy, productive guy and has tons of great friends. He still plays golf every day!
I do strongly suggest that you get some of those clear plastic "bumps" to mark remote control, etc. They have been a boon to hubby's independence. That and a talking watch - we cannot function without those two items!


Re:Daughter recently diagnosed legally blind have questions.



As a teacher of the visually impaired, I would recommend attending public schools. I am employed as a vision teacher by a company that contracts with a school district. I teach my students Braille, and they are still able to be in their regular classes. They can even Braille in the classroom, while the sighted students write. It's really no different. Until she learns to both read and write Braille, she will be able to acquire information auditorally.


Re:Daughter recently diagnosed legally blind have questions.



I was born blind and went to both public schools and a school for the blind. I preferred public school. I was in school before the special ed push, so things were a bit different. To many of the state "disability" schools are dumping grounds for students who cannot function in regular schools. Do not let the public school label your daughter special education without caution. I am a school psychologist and I have fought twice to keep blind students out of special ed. Special education was designed for developmental difficulties. A 504 should suffice, but stay on top of the school every step of the way. Learn braille- both you and your daughter. Get her mobility training with a cane. Both of these things help open the world and increase inedependence. Do not wait until she is older. As hard as her diagnosis is, we can and do live vital, rich lives.


Re:Daughter recently diagnosed legally blind have questions.



hi ,
the best resource for kids who are blind and the families that love them is the "national federation of the blind" .
your daughter deserves to be all she can be , her biggest problem are the self agrandizing , self serving , arrogant and incompetent characters you and she will encounter along the way , a lot of them work at charities and in the government .

she could even go to the NASA science camp for blind kids which means that the sky aint the limit anymore .

this spring , a young blind student graduated university of wisconsin with an MD and started a job as a bio-med researcher .
but you will need to be a pitbull advocate for your daughter .
as to state skools f/t blind , many have become wharehouses for kids with more than one disability often including retardation and skool districts refuse to accept the kids and that leaves a state institution or nothing .
be sure a public skool actually walks the talk they espouse about inclusion ,and what about online home skooling .


Re:Daughter recently diagnosed legally blind have questions.



Does a a representive from the Commission for the Blind only contact you if there is a minor involved ?


Re:Daughter recently diagnosed legally blind have questions.



Hi,
Like the other answerer I'm legaly blind and a couple of my kids have the same problems. Just like the first I went through regular schools etc and had pretty much the same exiperences. I didn't get mobility training and start using a cane did really until after school and that was a big nistake. The one thing we are doing with my daugthers is to ask them for their opinions. Right now, both are in regular schools but my oldest has started using a cane most of the time and is thinking about braille but her sister has not got that far. We find both are reasonable and realalistic when we talk to them about their problems.
Best of luck, its not an easy path
Annie


Re:Daughter recently diagnosed legally blind have questions.



You have a long road ahead of you, and teaching your daughter skills that are nesscary to help her function and keep her safe are vital. Once she is listed as Legally blind within a matter of weeks a representive from the Commission for the Blind in your area will contact you about her status and services that are availible to her.

As far as education of your daughter this is a serious hurddle I'm legally blind myself and I went thru the public school system and there were many school years were i just wanted to quit, but that was never an acceptable option for my parents or my liasion. Keep involved in her schooling go to every stupid team meeting and know what works for your daughter and what does not and don't back down. Also consider orientation and mobility, it is a godsend and vital to her independence.
Good luck


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