Skip to Content

AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Child newly diagnosed with Usher's Type II

We live in Alaska and flew down to the Casey Eye Institute were we got the diagnosis in April this year.

My daughter attends the Alaska State School for the Deaf and Hard of Hearing so we know many others with hearing loss but we do not know anyone with RP, let alone RP and hearing loss combined.

She is 5 yo and attends kindergarten and has already begun to experience some loss of night vision. I don't know how to support her, what I can do now to help her in the future, and what to anticipate.

I am a nurse and have read research articles on this condition but none that I have read have talked about everyday living, and the psychological components of this condition.

I read an article written by a fully hearing adult with RP where he began talking about the struggles he faces and I began to cry, because her struggles will be even more compounded by her hearing loss.

I just wish I could talk with other families who have children with this condition and other adults so that I can have an idea about what has helped them and how I can prepare my daughter for the loss of her vision.

There are currently 6 replies

Sort Replies Oldest to Newest


Re:Child newly diagnosed with Usher's Type II



thank-you


Re:Child newly diagnosed with Usher's Type II



Hi,

I know this is an old post, but I wanted to reply anyway - Just in case you ever check back.

I have Usher Syndrome. I have a severe to profound loss in one ear and a profound loss in the other. My vision has been deteriorating for years, and has recently dropped to legally blind. I am currently studying at university and am doing very well.

Please don't be too afraid for your daughter, she will probably grow up just fine - regardless of what her vision may be. It seems like you're doing the best for her and I know a great support network is one of the greatest tools you can give her.

I personally believe in the 'full toolbox' approach, especially where DB kids are concerned. All too often people extoll the virtues of pure oralism with CI/HA and speech, and avoiding sign and braille - calling them 'old fashioned' or 'crutches'. They're not, they're useful tools, as is tactile sign (which I love - it's a great way of having a personal, intimate, or discreet conversation with someone - I'd hate not to have that). If I can give you any advice, as someone who lives with US, it would be to make all tools available to her - sound though HAs (or maybe CI, if they're appropriate - I think they get pushed as the be all and end all too often though), signing - visual reading and tactile - it's useful and give a wonderful break from battling to understand through technology and speech-reading (when I still could speech-read), it also allows interaction with other DB people - many of whom use it. There are things like large print, CCTV, braille, etc any and all adaptive technological options that may be available - take advantage of them! Let her experience her world through as many mediums as possible and she will soon let you know what works for her and what doesn't. Don't rule anything out. Let her change her mind - What works now might not work in 5 years time. What works in 5 years time, probably won't work when she's at university or working. Don't listen to anyone who tells you to rule something out - Except her! Knowing the options and having the reassurance that you're ok with her using them is a great way of empowering her to make good living choices as she grows, and enabling her to become all that she can be. :)

I'm sure if you keep an open mind and keep showing her as much love as is evidenced in your post, then she will grow up to be a wonderful, successful, happy adult!

Best wishes.


Re:Child newly diagnosed with Usher's Type II



Hi,

I am so sorry to hear about your five year old child. I was researching on the computer about Usher's type II because my six year nephew was diagnosed this past week with Type II. I am sure that you and my sister are both going through the same types of feelings. My nephew started wearing hearing aids at the age of two and has suffered from night blindness since age three. We recently noticed that he was losing his sight off to both sides and was only seeing tunnel vision. The school board provided him with a video magnifier in December and has provided great assistance to him in the classroom. Next week, he is being evaluated by the vision impaired department with the school board so that the vision impaired teacher can start providing services for him. I know my sister would love having someone to talk with that is going through the same heartbreak. I will tell her about this message board. Right now, she is so busy with doctors appointments and working.


Re:Child newly diagnosed with Usher's Type II



How sad.


Re:Child newly diagnosed with Usher's Type II



Hi:

I know several adults with Usher's syndrome. You should contact Helen Keller National Centre for Deaf Blind Youths and Adults at
http://www.hknc.org/

Bob


Re:Child newly diagnosed with Usher's Type II



I feel so bad!


Log in to Post a Reply