More Thoughts
I wanted to add a few more things from the last post.
They do offer support for families, too. I am pretty much the only one in the family who knows signs. (My sister, who has US Type II, is taking an ASL class right now. She wants to communicate better with me. That's really sweet of her, but I hope she knows how beneficial it will be for her, too.)
If tactile signing was an option, they would have to learn it, too. We are so oral, it wouldn't be second nature to sign. That's what makes it so hard to get into that. It's easier to put off things. I realize the importance of preparing myself, and there are many like me who wait for whatever reason. Also, most US Type IIs were mainstreamed right away. So they didn't learn signs, either. If it (the vision) had been a part of my life as I was growing up, things may have been different. Maybe I would have been more involved with Deaf culture, thus eliminating the sign language issue. It's so much easier for everyone to just repeat what they say (even if they do get frustrated) than it is to learn signs.
My oldest daughter does know the manual alphabet and very few signs, but she does help me "fill in the blanks" when I simply don't understand something.
The Milwaukee thing, I believe, is only supposed to be one week deal for mobility training. I haven't contacted my voc rehab about it lately, but it has been weighing on my mind for the past year. I have no idea when it's going to happen. I hope that the center can be flexible and maybe just come to me instead of me having to go there. Some people can get mobility training a few hours a week for a span of several months instead of a crash marathon in one week.
I am thinking of the future. I would not want to become illiterate. I love reading. If my eyes do get to the point that it's really bad, I would want to read Braille. It might slow me down a lot until I can be fluent, but that's better than nothing. The technology that's out there is sooooo expensive. CCTVs. Braille displays that connect to the computer, etc. I would like to continue blogging and reading other blogs. Some Braille displays make it hard to access the Internet.
I could take Braille courses via correspondence and email. And at my own pace. I do have options. I know I really don't want to pack up and leave for months. If I have to learn a little here and there, fine.
As far as "coming out", I have always had an issue with people staring at me. When I was in high school, I didn't play sports. All I could think about was all those people sitting in the bleachers, watching. I would get so nervous just thinking about that I would do something stupid. Stage fright? Maybe. (That tells you a lot about my self-esteem. Some of it has to do with being the "baby" of the family, being picked on as it is usually done in large families. I didn't know how to speak up for myself or defend myself. I always felt like I was being judged and criticized and it carried into other aspects of my life.)
I would not like people staring at me when I have to tap "Moses" ("Red Sea" effect that is created when people move out of the way when they see the white cane). But one Usher person pointed out that people would be staring at you anyway if you walk into a display in the grocery store aisle and say, "I'm sorry" or "Excuse me" when no one's there.
Labels: D/deaf, family, RP/Usher Syndrome, sign language
8 Comments:
well, i wish you wisdom as how best to proceed. it can't be an easy decision. had to giggle at moses and the red sea as well as your friend's practical advice.
Lime-It is not. Even when you know it's the right thing to do, you just don't want to deal with the emotional upheaval it will bring.
All I can offer is a hug. I know how it feels to be standing on the edge of a precipice, not knowing which way to go. You have a ton of strength Shari. If you need it, I am not well versed but I have an email address. Big hugs to you. BTW, that recipe was loved by all.
Thanks, MrsGrumpy. There's always a silver lining if you look for it. :)
I'm so bad at learning things until I really need them. I can't make myself do it ahead of time, even if I know I'll need it later. It's easier to learn when the NEED motivator is activated.
I have no idea how I got to your blog, but as an (uncertified/ novice) interpreter for the deaf, I am very interested in your thoughts here -- and I REALLY can understand and appreciate the whole, "please don't stare at me" thing. I'm a teacher, and I love to teach adult Bible classes, but I want to be invisible when I walk into a crowd (weird, I know).
I interpreted for one woman who had Usher's years ago when I lived in a different town. I have always been impressed with the Usher's folks who just keep going, keep adapting as their (disease? syndrome? what do we call it? condition?) continues to rob them of their senses. What choice do they have, I'm sure, but I would be in bed with the covers over my head!
Thanks, Sarah. I guess we just "do". We just live with it and do our best. Like you said, we have no choice. Thank goodness for CIs, though. So I do have the option to hear and only have one loss of sense (lessening vision) to really deal with then. Definitely will consider CIs.
I certainly understand the self esteem/big families thing. And on making the decision, I can so appreciate that as well. You know it will be good for you in the long run, but sacrifices will have to be made. One day at a time and baby steps. Good luck.
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