Moving along, or not, as the case may be

Freeze Frame

As of tomorrow, I’ve had my CI approval letter for one week. So far, I haven’t gotten any new information. It’s starting to get frustrating, but I also haven’t been pursuing it as aggressively as I could so it’s just as much my fault as the doctor’s office.

On Friday, when I got the letter in the mail, it was too late to call the doctor’s office and they are closed on the weekend. I sent an email on Sunday to the audiologist who did my CI evaluation and who had written the letter for my approval request. She emailed me back on Monday of this week, very happy and excited for me, but mentioned she wasn’t in the office that day. She gave me the name of someone to contact in the office. Then she mentioned that she’s due on August 11 (she’s pregnant) and wouldn’t be the one doing my activation and mapping. That was a little disappointing because I really like her, but I’d rather start fresh with someone who will work with me from day one, rather than start with her and then have her go on maternity leave and have to get used to a whole new person for my audiology stuff.

By the time I received her email, it was too late to call the office (not that I would call – I would have Dave do it). Tuesday morning we faxed the approval letter along with a cover letter asking what the next steps are. They never responded, so Wednesday Dave tried to call them. We had a busy day with our candle business but we were done by 4:30, which we thought would be fine because they’re open til 5:00. Well, he got a voicemail message telling him to call back during regular business hours. (?!)

So we tried this morning (Thursday) at 8:30 – they open at 8:00, so we figured there would be no problem getting a hold of them. Nope – same message about regular business hours. I speculated that maybe they don’t answer the phones for the first hour and last hour of the day, as weird as that may be, so Dave tried again at 9:30. He got through but sat on hold most of the time. Finally the receptionist told him that the woman we were supposed to contact is busy and she’ll call us back at 1:00. I would be really surprised if she actually called.

The doctor’s office was CC’d on the approval letter and I actually assumed they would contact me as soon as they received it. Obviously, I was wrong!

Making Life Easier, Part 2

Back in April, after I first lost the rest of my hearing, I applied for a TTY from ITAC and for a few devices on loan from the Illinois Assistive Technology Program. I received the TTY within a week, as well as a visual alerting device that activates a light when the phone rings (I didn’t even realize that was part of the TTY program). We’ve been using the TTY more and more lately, especially Dave since he’s the one who makes most of the phone calls. I just hate the telephone – not only because it’s always been hard for me to understand on the phone, but also because I feel like it puts me on the spot. I get tongue-tied and nervous. I really prefer email, where I can think about what I’m going to say. Dave isn’t bothered by the phone except for the understanding part – he has as much trouble as I ever did with comprehension on the phone. So the TTY has been pretty amazing for him – he loves it!

We’ve only received one call via TTY so far, when my mom called about a month ago. I can tell she really doesn’t like it though and she hasn’t called since – she prefers to just stop by and talk since she lives nearby. She’ll call and talk to Dave or the kids, of course, but if she wants to talk to me, she comes over. Our TTY conversation was awkward, and she kept talking to the operator instead of me. For example, she’d say “Tell her I’m picking Paige up on Saturday” and then the operator would have to tell her to talk to me directly. I know it really, really bothered her to have a third party involved in the call.

I’ve signed up for Web CapTel and I might try calling her that way. I have to do it when Dave is home because apparently they call your phone first, and I can’t hear at all so I can’t answer the phone. I mean, I don’t know if they actually say anything when they call me, or if you just pick up the phone and don’t hear anything on the other line while they connect you. So I’m going to have him pick up the phone, for the first time anyway, and help me in case things go wrong. If it works, though, then I can actually speak to my mom and her part of the conversation will be typed back to me – I think this might make things less awkward for her.

As far as the loan items go, I never received them or heard at all from the IL Assistive Technology Program so that was a bust. I was pretty disappointed because it looked like a great way to try out items that would be potentially expensive purchases. If they were really helpful, then I’d know they were worth the money. Money is just too tight for us to go around buying all these cool devices they have for the deaf. It’s nice to know they exist, but they don’t do me any good when I can’t afford them!

Basically I’m getting by with the help of my family and our dog alerting me. The door alert device is affordable but we haven’t figured out which one would be best – I think you can get the kind that’s hard-wired into your doorbell, or just simple ones that might be battery-activated. That’s not much of an issue for me because I’m rarely home alone and when I am, Toby (our dog) goes crazy when someone’s at the door. I can see him barking and freaking out and know what’s going on.

I’ve been continuing my sign language education and really enjoying it! It goes very, very slowly though because I have to fit it in when I have some free time. The lessons I’m following online (at Lifeprint.com) sometimes show signs differently than the way Dave does them, so after I finish a lesson I go through the signs with him. If he does them differently, he shows me so that we can be consistent with each other (I don’t imagine I’ll ever sign much with anyone other than Dave). I’ve been watching ASL vlogs when I can, if they are captioned, so I can get used to reading signs. Most of the time they go too fast for me but I’m starting to catch signs here and there, which is exciting!

Fingerspelling is getting a lot easier, and it’s really been helpful at times. During Eric’s college orientation I did a lot of fingerspelling to Dave because I can’t tell how loud I’m talking, and I didn’t want to be shouting to him during a presentation. It’s nice to have that silent mode of communication!

After I read Beverly Biderman’s book, “Wired for Sound”, I started to explore Cued Speech. She mentions it at the back of the book in the resources section, and it piqued my curiosity. From the descriptions I read on the websites I visited, it sounded like something that would be faster to learn (compared to ASL) and would be helpful for someone like me, who depends on lipreading, and someone like Dave, who can hear but has a severe hearing loss. We’re still continuing our sign language studies, of course, but we thought it would be good to have lots of communication methods at our disposal. So I set out to find learning materials for Cued Speech.

It’s a lot more difficult to access information online, and there were no classes that I could find. I decided to check our local library – they didn’t have any Cued Speech materials, but they have a great Interlibrary Loan program so I requested the Discovering Cued Speech DVD set. It took about 2 weeks to receive (it looks like it came all the way from Kansas!) but we finally got a call letting us know we could pick it up. It’s fantastic! There’s 2 DVDs, a workbook and a little sheet with the handshapes and locations for quick reference.

We do a review in the morning and then a new lesson at night. It’s been fascinating to see how many sounds look so similar on the lips – even after all these years of lipreading, I never realized that! We’ve only had the set for a couple of days and already I feel comfortable with what I’ve learned. We get to keep it til July 10 and I really think by then we’ll have the hang of it. I’ll get the workbook so we can keep reviewing after we have to return everything. It’s really exciting! I had heard of Cued Speech before and just never took the time to find out what it was. It’s really turning out to be a valuable tool for us, along with sign language.

Eric likes to joke around and say it looks like we’re throwing gang signs. I guess we better be careful using Cued Speech when we’re downtown…who knows what we might advertently “say”! 😯

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About wendiwendy

This was my original info in 2008: I'm a newly-deafened adult. I'm still getting used to the sudden silence, and I want to talk in the only manner where I can still hear my voice...in print. Now: I'm a bionic woman and I can hear myself roar!!

Posted on June 26, 2008, in Cochlear Implants & Hearing Loss, Observations and tagged , , , , , . Bookmark the permalink. 5 Comments.

  1. “Discovering Cued Speech” can also be viewed for free online, with captions, at the Described and Captioned Media Program (DCMP) at http://www.dcmp.org/Catalog/TitleDetail.aspx?TID=3312

    DCMP has some other cueing-related items in their media library, mostly CD-ROMs and a couple DVDs. Just do a subject search in their catalog for “cued speech.”

    Also, try the “Art of Cueing” lessons online, though I’m not sure their site is still working. http://web7.mit.edu/CS/Art/

    Keep in mind that when the older sources (including Discovering Cued Speech and The Art of Cuing) say to cue some /ee/ sounds as /ih/ that’s no longer necessary. Just cue syllables as *you* would pronounce them.

    Do you say electricity as /ee lek trih cih tih/? Only if you’re from a specific region of England or the South. As for me, it ends in /tee/ as in T-shirt, not /tih/ as in tickle.

    Old habits are hard to break, though, and many of the people who have been cueing for a long time have convinced themselves to cue some /ee/ as /ih/ even though that’s not how they actually pronounce them.

    For some beginner cueing games, see http://dailycues.com/activities.html

    There a neat site for people learning Cued British English at http://learntocue.co.uk/
    Their vowels have different placements than ours, so ignore the vowel instruction. However, the handshape/consonant games are really fun and match perfectly with American cues.

    If you want to try to find someone in your area who is a cued speech instructor, see the list at http://cuedspeech.org/sub/resources/findinstructor.asp
    and contact the National Cued Speech Association to ask if there are any known cuers in your area.

    Keep at it with the sign language learning, too, as this will open doors to more social circles. But since you and your husband are both English users, you may find that cueing really helps you communicate in English visually.

    Good luck and keep learning!

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  2. one more resource for you:
    Cued Speech information sheets at http://cuedspeech.org/sub/cued/myths_facts.asp

    You might be especially interested in the one called “Using Cued Speech to Maximize the Benefits of Cochlear Implants”

    When you set up your auditory rehab for working with your new CI, maybe you can find speech therapists who can cue. Or ask them to learn to cue so you can use it in your sessions.

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  3. oh, no I had a longer post that I thought went through.. Maybe it didn’t…

    ok, the quick version:

    “Discovering Cued Speech” is also available in free online streaming at http://www.dcmp.org/Catalog/TitleDetail.aspx?TID=3312
    While you’re there, search their online catalog for other cued speech materials.

    There used to be a rule in American cueing that you had to cue some /ee/ sounds as /ih/ instead (ee as in T-shirt, ih as in mitt). Now, new cuers are taught to cue how the word is pronounced. Unless your accent is from a specific region of England or of the South, you’ll pronounce “happy” with the /ee/ sound at the end, not the /ih/ sound. Older materials, or materials made by people who learned to cue many years ago (like “Discovering Cued Speech” use the old “ih instead of ee” rule, but you don’t have to.

    Other fun sites to help you learn and practice your cueing:

    http://dailycues.com/activities.html

    http://learntocue.co.uk/
    –> this British site has some fun animated games, but ONLY use the consonant/handshape ones. British cueing has different vowel placements than American cueing – ignore the vowel stuff on that site so you don’t get confused.

    You can contact the National Cued Speech Association for help in locating any cuers and/or cued speech instructors in your area of the country.

    Good luck! Don’t give up on ASL, as it will open many social doors to you. But you and your husband may find cueing to be a great way to communicate in English visually.

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  4. Wendi, I do feel for you with the doctor’s office. Ugh. I finally just mailed a copy of my letter. Never did get to the library to fax them. (When we bought a new printer, it came with a scanner and copier, a 3 in 1 deal. I wanted a fax, too, but Hubby was like, do we really need a fax machine included in it?) So we didn’t. Oh well. You never know if you will use it enough.

    My approval letter came a week ago on Tuesday or Monday. I left it alone, too. I thought that they’d get a CC, too. The secretary said that the office gets things SLOWLY. She told me to just fax or mail the copy to her. Let’s see what happens now. Good luck to you, too.

    Cued speech. I’ve heard of it, but never really looked it up. That looks interesting. Will look it up as soon as I post this comment. 🙂

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  5. With the WebCaptel once you click on the button “make call” wait 5 seconds and you can watch it dial your phone and then it will count up the rings. You don’t have to wait for David to make a phone call! You can have some sense of independence here!

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