Wednesday, October 31

We Survived Halloween

I made it through my first Halloween with our new daughter Rebecca who has Ushers Syndrome 1. We only ran into 3 parked vehicles, ran off of 1 curb and ran over 2 kids. I think we did okay. Thank everyone for their suggestions. I got flashlights for everyone in the family and we used them to help light her path and for her to find us when she turned back around (great suggestion). Her school has a class that she will start next year to help her learn to walk with a white cane. I didn't have a clue where to start teaching her and during the day she is fine. We are rarely outside after it gets dark, so I think that we will be okay waiting until next year. Her vision during the day is fine other than her peripheral vision. She still runs into people from the side and doesn't see doorways very well. She will forever have bruises on her poor little arms and knees.


Nichola said...

Looks like your girl had a whole bunch of fun. Pardon me if this is the 100th time someone told you about Seattle as the home to one of the nation's largest deaf blind communities. Do you have contacts with Deaf adults with US? I use the caps D to refer to the culturally deaf. Let me know as I have great contacts over there.

Jess said...

i'm happy rebecca enjoyed halloween... always a wonderful tradition for kids (and adults too!).

the only suggestion i can make for anyone who has exposure to people with usher syndrome is to look at their own thoughts and viewpoints of deaf people and deaf-blind people in general. it is well known that many deaf-blind people are plaqued with low self-esteem and that's the last thing any parent would want for their child, i can imagine. one thing that contributes to low self-esteem is the messages that other people send to them through their words and actions.

teaching rebecca orientation and mobility skills is one of the best things you could do for her - she can become independent and confident that way. you could also talk with her about accepting herself for who she is... she will likely feel at times that she was cursed with usher's and that it defines who she is.

people do not have to feel cursed and be defined by usher's. it is a part of who they are, yes... but it shouldn't have to get to the point where people think "usher's!" when they see rebecca's name. traditionally, it just brings up pity and the sense of a stigma within the community. as a deaf woman with usher's syndrome, i can tell you that this stigma is quite annoying. i see it in people's eyes when i say matter-of-factly "i have usher's, mind tapping me on the shoulder rather than waving to get my attention?" their eyes go "ohh.... usher's. dangit, i'm sorry." don't be sorry. it's part of life - learning how to deal with what is given to you, in the best way possible.

people may not even realize the messages they may be sending to other people through simple words such as "we survived halloween!"

if i saw someone say that, i'd think "oh, ghouls and zombies didn't attack you? awesome!" rather than "ohhhh, rebecca didn't break a bone by walking in the dark? awesome!"

yes... teach her skills and modify your routines so she can get around easier and feel more confident (i.e., use flashlights, teach her to be aware of her surroundings and to use her other senses). but yes, also teach her that it can be beautiful to have usher's be a part of her rather than a burden. people, especially children, absorb so many more hidden messages than people would realize.

Dianrez said...

Wonderful that you are raising Rebecca to be a whole person, Usher's and all, and to own all of it while teaching her the skills she may need to use.

There is great variability in people with Usher's; for example, I have it and still see well enough in my 60's to live as a sighted Deaf person. Teach Rebecca as a Deaf child along with a full toolbox of language and moblility skills.

Willow said...

Hi Candice,

Ever since I read about Usher syndrome in the latest issue of Marie Claire, I've been really interested and wanting to help out in my own little way. I'm just a newbie but I've begun to gradually improve the Wikipedia page about Usher syndrome (
and I would be grateful for any suggestions or contributions that you or other people with Usher syndrome have. I included a link and brief description of your blog, which I thought might delight you and Rebecca; but if you don't want it, then I'd be happy to remove it as well.

Wishing you and your whole family all the best, Willow