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Posts Tagged ‘Helen Keller National Center for the Deaf-Blind’


Still Looking Back:

Time is passing, but I have to admit that I wish it would go by a little faster. The week has been interesting at times and upsetting at others. My favorite thing happened on Monday afternoon. I returned to the residence hall and was given a small package. I opened it to find 3 DVD’s from my church, Mabel White Baptist. A friend of mine, Jana, had been so thoughtful as to have the master copied for each Sunday that I had already been gone. It was even more special to me because I got to see more of the people in the church and choir than just a copy of what was edited for tv. I spent the next hour or so, singing my heart out with the choir with tears of joy running down my face. I could even see Mr. George Foster’s colors! Many of you won’t understand that, but my church friends will. Basically, Mr. George is a dear man who sings in our choir in the front row. Although I only see dark shadows and some blurry bright colors now, around Mr. George I see the most beautiful colors and when he reads from the Bible (he orates better than James Earl Jones) those colors brighten to a bright light of white. I love to hear and see him read! I do not believe in the New Age explanations of auras, so don’t even ask me about them. This has nothing to do with auras or New Age spiritualism. God has just given me a little gift to help me cope as He saw fit to take my vision away. Regardless, all of this is in His plan and will somehow bring Him glory, especially if I can hold tight to Him and not get in the way.

Training has gone well when I have been well enough to go. I finished making several groups of communication cards and brailling them so I can find them when I need them. I made some for clothes shopping, food shopping, restaurants, airports and travel, and hair cuts. I know how to do them now and will make more when the situation warrants them.

In mobility, I practiced cane travel without my dear Joey. He didn’t like that. He thinks he is supposed to guide me. He is, but I have to know the ropes to better guide him. We have also found that my training in Ga was ok, but lacking in some ways. A few things I actually think are safer the way HKNC teaches them. The hardest thing was reteaching myself to walk with my cane remembering to “clear my steps.” That means that my cane is supposed to be ahead of my steps so that it will catch potholes, debris, etc. before my foot steps down there and gives me enough reaction time to stop. I am sooo uncoordinated that we laughed as I tried to keep in step. I was starting to walk like a tin soldier!big grin

Due to asthma attacks, I missed technology most of the week. In Independent living, I cooked Chinese Chicken in a wok on the stovetop. It was good. It was pretty easy and didn’t take long to make. That is the key for me. I want it all quick and easy, but good!

Sign language instruction is becoming the priority for me in Commuications (CLC) class. I am still doing well with my braille. I have now gotten well over a hundred contractions learned and am brailling Perkins Braillers(Perkins Brailler- non-electric typewriter with only 6 keys and a spacebar) in contracted braille every night to cement those in my head. We are now going to put more emphasis on the sign languge (tactual) so I can communicate around here more. Most people are deaf, so I have a hard time talking with them since my signs have been so limited. I am looking forward to that. I have been teaching Scott, my husband, some signs at night on the XBox 360 live web cam. He is trying, bless his heart!

I saw a Retinologist and the eye doctor on Thursday morning after one my my attacks. I was in the nurse’s office all morning. They pushed my doctor’s appointment until last so I could get over my attack first. They dialated my eyes. I am now showing some damage to my retina which has been hard to see until now. I also have some damage to my optic nerve pole which is explaining my very poor central vision. That narrowed my cause of blindness down to atypical Retinitis Pigmentosa or Rod/Cone Dystrophy. Regardless, they say I am in late stages. Total blindness is a definite possibility. They recommend to have some final answers on my prognosis and my children’s children that I go see the world’s leading expert on Retinal Degenerative diseases who is located in Boston, MA. Since this will not have anything to do with my job, Vocational Rehab won’t pay for it, so HKNC can’t send me now. It will have to be something we do ourselves once I return to GA. It is an expensive trip, so I doubt it will happen, but we will just let time and God tell us on that issue. Needless to say, the news didn’t make me feel any better.

I have mentioned more asthma attacks and yes, I have had two very bad ones. The smoke situation has gotten worse and some smokers have taken all of this personally. I am becoming public enemy no. 1. Although, actually, the NY state laws were being violated before. My asthma attacks just brought it home to HKNC why those laws were important. They moved the smoking areas, but without doing much thinking, just placed them along the main sidewalk that we all have to trail to go between the residence hall and the training building. Now I walk through a tunnel of smoke. After the last attack, the powers that be said they will move the benches, but are looking for a way to be equitable to the smokers. I told the medical team that they should move the smokers to the middle of the field on the side of the building, but provide them with a covered place to sit and talk as they smoke. They are having a big meeting next week to discuss the matter. In the meantime, I am late to class as I sit in the residence hall until staff says the sidewalk is cleared of smokers. I was already pretty lonely here since conversation was difficult, but some of the smokers now make a few “comments” that even I can understand and stay away from me. It is upsetting and I was feeling pretty tired after no sleep for two nights of terrible breathing and two attacks. I spent Friday afternoon crying and wanting to go home. I can sign that very well now!!!!!

Well, don’t worry about us. Joey snuggles up to me even closer when I am sick. He is my 2nd best friend! Jesus is my first and don’t worry, Scott is tied at 2nd!

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Continuing my look back:

This has been a long week and weekend. My braille class on Monday was very frustrating for me and possibly my teacher who had to put up with me. I was so nervous with her watching me that I couldn’t make out hardly any letters. Alone, I am reading a whole page in 20 mins. surprise Oh, I am burning the pages up, aren’t I? Actually that is faster since I used to get tired before I finished a page. I find it funny and frustrating at the same time when I spell out a word like b- e- a- t. Then cannot figure out the word to save my life. My mind can’t seem to switch from the individual letters to the word-beat. I can’t even read a simple word like beat. The whole thing is from the fact that I am actually “rewiring” my brain to take print input through the portions of the brain that deal with touch. Then it has to be routed to the reasoning part of the brain. Slowly, but surely, I will get it. You have to focus very hard and you have to relax. Relaxing when people are watching me has always been a problem for me. I used to be able to teach away and do all kinds of crazy things with my students as my principal would come in and out, help us, watch us, etc. However, as soon as it was evaluation time, I would freeze up terribly. I have such a strange personality. Anyway, I practice my braille daily, so I am sure it will eventually click.

In support group, we shared how friends and family, though loving us and well-intentioned, can’t seem to understand our decrease vision and hearing problems. They all shared how even family members get tired and don’t even want to try to communicate because it is frustrating for them, too. Arguments are quite common because one or both parties will misunderstand each other. It was echoed around the room as more hearing and vision is lost, the more we tend to sit alone.

It technology class, I had to spend time with JAWS and the braille display editing the mistakes in a paper. I would go through with the JAWS and catch what I could that way, and then switch to the braille display and find the rest. I still like using the braille display better. I misunderstand JAWS speech a lot, but until I am better with braille, I will need both.

Tech Lab

"Tech Lab"

This was the tech setup for me including the braille display.

"This was the tech setup for me including the braille display."

Joey under the desk in my tech class.

"Joey under the desk in my tech class."

In communications, we began making a communications booklet using a simple photo album that is small enough to fit into a pocket. Val printed up some cards with some common things that I might need if out alone such as, “Please lead me to a quiet table” or “Please help me to the handicapped accessible restroom.” She also made one to inform people that I am deafblind and can speak inviting them to type on the regular or QWERTY keyboard of my portable braille communicator to talk with me. The next morning she took me out early to breakfast at a small cafe that really was quite fancy. At 8:00 am, they were dressed a bit more formal than we are used to and the meals were definitely more than Waffle House and Shoneys breakfast bar. The food was good. I used my cards to get us to a table. I then used the SBC (braille communicator) to ask about food categories. I choose the omelets. Then the various omelets were typed in as I read the braille side. I chose the Western Omelet with homefries, coke, and V8 juice. It was slower going than normal ordering, but when I can read faster, it will be easier. Many places do not have braille menus and often do not have those menus transcribed very well, so they are difficult to use. We will use this again soon and I will have Val take some pictures to help you understand it better.

I also began sign instruction with a communications teacher. I will be doing exclusively tactual sign instruction. It is really the only sign that is usable to me. I see so little of the other person’s finger movements that is too easy to misunderstand the signs.

In communications, Val also helped me to pick out a braille wristband watch, a wallet for keeping my money sorted, various writing guides that are tons better than what I have tried to use, and messenger bag. I don’t know if I will get the messenger bag, but we discussed it. I have to keep my hands free to command Joey and shoulder bags frequently fall off during the command movements. Sometimes it scares Joey falling off like that. I am also looking into a little backpack purse, too. All of these things I used to take for granted. I can’t count money anymore because I can’t see what denomination the money is. I have learned money folding, but without something to keep them in the folding gets messed up in my pocket. I am then back to not knowing for sure what my money is and people take advantage of me when I give them more money than I think I am. I have also use signature guides and check writing guides, but they all tend to slip and are hard to place correctly on the paper. Here Val showed me guides for writing cards, letters, checks, etc. The check writing guide is so unlike anything I have seen and it worked very well. You actually put the check inside a plastic holder with slots in the right places. There is no way to get it wrong.

In Independent Living, I could Chicken Parmigiana in the microwave with noodles cooked in the rice cooker. It went quite well. The chicken turned out well and was done in 5 mins. I think even someone like me who hates to cook can handle that. My husband might like the outcome of this training.

I also saw the low vision spec. again. We did another field of vision test since the doctor who specializes in Usher’s Syndrome will be seeing me next week. We did the full test which means they didn’t shorten it for just a little more than my known peripheral vision. It was long and I had a terrible headache afterwards. Melida, the low vision spec., also helped me with the CCTV to show me my current magnification requirements and then helped me find the right tints for the new glasses they are going to get me that will help with light sensitivity, UV protection, and clarity. The glasses will be dark amber with shields on the top and sides. I haven’t been able to get exactly what I need anywhere else.

Mia, my case social worker and mental health specialist, helped me by changing my schedule a little more. My case manager wanted me to have a little less self-directed study and more actual instruction in sign, braille, and technology. One really neat thing she did was to schedule a class with her, Mia, and Steffie, the deafblind woman that I try to talk with as often as I can. Steffie is very patient and kind. She even tries to teach me new signs. With Mia’s help, we are going to talk more so that I can learn the tactual sign faster.

In not so good news, I missed the Apple Festival on Sat because I had to take Joey to the vet. I noticed that he was getting ear infections in both ears. I expected that since he is prone to them and was trying to prevent it, but he still got them. The vet was very nice and did a deep clean of the ear canals using a syringe and small tubing. Joey was a real trooper. He is now getting drops in both ears daily for two weeks that has hydrocortisone, antibiotic, and anti-fungal meds in it. It has a long tubing to allow deep access to the ear canal as well. That should really get the meds down where it is needed. We will go back in two weeks for a recheck.

I was not allowed to go to church on Sunday because they had another trip planned to the festival, so there wouldn’t be enough staff. I was told to go to the festival. It seems these trips are counted as part of my training. I was observed and instructed as the day went on. The festival was nice. It was a lot of walking which I like. I had a little food like roasted corn and apple pie with ice cream. We were all “appled out” though after about 3 hours and since we were allowed to be out until after 4:00, they took us to a beach about 20 mins or so away. It wasn’t a beach like I am used to since there wasn’t much beach sand, but dirt and rocks. However, it was still very pretty. I could feel the breezes and make out the white blurs of boats on the water. We were on North Shore meaning we could see the land of the mainland a short distance away. I couldn’t, but it was all interpreted to me. They describe every thing in detail to you. I would imagine that to do that so well to help a blind person visualize would take a good deal of practice.

Today is the Columbus Day holiday, so the majority of HKNC is closed. I am just catching up with the blog, sleeping, and studying braille. Joey is resting. He doesn’t feel quite up to par. My allergies and asthma is getting a little worse due to the fall weather, so my blood sugars are running a little higher has well. I will spend most of the day resting and preparing for the coming week. I have some pics of things I took regarding training. I am having a little trouble getting them uploaded, but will add them as soon as I figure out what is wrong. It worked well last week, so who knows?

I miss you all greatly. Take care and know that Little Joe and I are thinking about you and praying for you. Yes, Little Joe prays every night. He is a very spiritual dog.

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Week 2: Out of the Evaluation Phase

Well, they have moved me out of the usual 8 week evaluation period and straight into the training phase. Hopefully, that will mean that I will get to come home a little sooner. We shall see. I still have got to get this old brain to learn a lot of new skills. This week involved me transcribing more Braille and using the Perkins Brailler, which is like an old manual typewriter, but it only has 6 keys and a spacebar. The 6 keys each stand for one dot in the Braille cell. Depending on which keys I hit, I form different patterns of dots to form letters or punctuation. For example, there are 2 vertical rows of 3 dots in a Braille cell. 1 dot in the top left is letter a. If I want to capitalize that a, I use two Braille cells beside each other with the first having a dot in the lower right, 6, spot meaning the next letter is a capital. Then I would follow it with a dot in the upper right, 1, spot. The dots are numbered like this:
1 4
2 5
3 6
Here is the Braille alphabet, so you can get an idea of what I am learning:
Braille Alphabet:

Braille Pictures, Images and Photos

Words and sentences are made by combinations of those cells. However to write these letters so the dot show up on the top side of a page to be read, you have to type them backwards. Now that is a feat. If you are interested in learning more about Braille and Louis Braille, who invented the language, check out the American Federation for the Blind’s site, http://www.afb.org/braillebug/braille_print.asp.
I am continuing to cook blindfolded in the Independent Learning class. I cooked rice in a rice cooker that was quite simple, but try it blindfolded without burning yourself. I have to find all the ingredients for whatever I am cooking and place them on the tray (like you use to carry your plate at a school cafeteria). That is so I don’t drop something on the floor as I cut, open, stir, etc. Cutting, chopping is done by using the knuckles as a guide and sliding down through the meat or potatoes or whatever with my fingertips pulled back out of the way. It is still hard, but I only would scrape the knuckles a little as opposed to cutting a finger off.
In technology, they adjusted JAWS, a screen reader, to work with my FM system so I can hear it a little better. I hope now I can learn how to use it better. Some of you might remember my computer talking to me when you came to the school for finals or enrolling.
The coolest thing was finding out that I read Grade 1 Braille well enough to begin working with the Braille display. The Braille display looks sort of like a wrist board that some computers have. It sits under the regular keyboard with a part that extends out past the keyboard that has plastic bumps that fit through holes in the shape of the Braille cell that I showed earlier. Whatever is on the screen at the moment is shown in the Braille cells. In a short time because of my excellent teacher, Bill, I was going up and down a document reading various parts about the life of Helen Keller. I wonder why they use that document.
Another neat thing I did was in mobility. In addition to going out into the community to show them if Little Joe and I could maneuver safely on our own, they showed me how to get help as a deaf blind person alone. They give you a card that hangs around your neck with specific words and order of those words on it that you hold up when you want to cross the street. It says, “Please help me to cross the street. I am deaf blind.” The choice and order of words has been researched thoroughly. In fact, one of my instructors led the research recently for his Phd. dissertation . They found that if you said, “I am deaf blind,” first that it scared people away completely. If you put “Help me” first, people didn’t read far enough to see what the help was for and assumed you were asking for money. The current use of words was found to be the best to get people to be willing to help. After just a few minutes, a motorist actually stopped the car, got out, and asked to help me across the street. I thought it was a set up meaning a staff member who was waiting to show me how it worked, but no, it was an ordinary motorist who saw my card and thought I was completely alone. I have to admit that it was still a bit scary. The world is full of crazy people today.
For fun, I got to go to Shea Stadium and watch the NY Mets play. New Yawkers, as they call themselves, really take their baseball seriously. Most of the things I had heard about the NY fans seems true. They can be rowdy. It was fun. With each resident that went, an interpreter sat beside them and tactually signed to them and me what was going on during the game. Of course, they had to teach me some new signs at the same time to do this for me. It was very interesting. NY lost 10-9. In sign, the score is done by signing the numbers giving the winning score first and signing the home team or team that you are pulling for close to your heart. The other score is signed in front of you away from the chest. In other words, my interpreter signed the 10 in front of her away from her chest and then moved her hand to her heart and signed the 9. That was a new idea for me. It is amazing how in the way they do signs it gives so much information.Shea Stadium- baseball game from way up high
I didn’t get to take Little Joe to the game with me. They felt he would not be safe and would get too nervous. He stayed at the school in the office with personnel. They fed him treats and played with him with his toys all night. They really love Joe here. He gets more attention than any of the other guide dogs. He is truly spoiled. He even gets his own bed in my room.
I get to go to church tomorrow. The subject of religion up here has been a bit touchy. I have gotten tremendous help on every other subject, but going to church is like , “uh, we will see what we can do…, but I don’t know.” I guess that is because it is hard to get volunteers from outside for taking me to church. The staff is wonderful and really try. Well, tomorrow, staff is plentiful, so they have agreed to get staff to drop me off at a United Methodist Church about 5 minutes from the school. They will pick me up after church. I am a little nervous because I won’t know how to get around, and I don’t know how these people will know how to help me. I will trust the Lord to send me the helpful people. In addition, as I speak about religion at this point, I have to say I have gotten into “trouble” already. Most of you know that speaking of God, Jesus, how my faith sustains me, etc. just rolls out. I don’t preach or anything, and I don’t really witness except by example, I hope. However, in the Usher’s Syndrome support group that I have to attend on Monday afternoons, they asked if we had accepted our Usher’s, and if so how had we arrived at that point. I kept quiet until they specifically asked me to share. I am not ashamed, so I began with I believe that there is a God who is greater than I and that He has sifted everything that life and/or Satan wishes to throw into our path. If He has decided that I should face certain trials, then I know from experience and His word that it is for His glory and my benefit. I can handle all things through Christ who strengthens me. I then went on saying that it was still hard at times and how I have many family members and friends who support me. In other places, they also ask you a lot of questions to get to know you. Many times the questions of how are you coping, how are you handling these things, etc. come up. In a conversation with one lady, and I don’t remember who. She told me that we are supposed to leave religion and politics out of conversations here. I responded with the fact that I am not going up to residents or staff and trying to convert them. I was asked my feelings and thoughts, so I gave them. I will not respond with anything other than the truth. My faith is a big part of who I am, and I could not change that even if I wanted to do so. Of course, I understand the policy, and it is necessary in a place like this for the protection of residents, other staff and myself. The lady was not angry at all, and it was just a be aware kind of thing, so it didn’t bother me at all.
Well, Little Joe wants to go play in the dog run, and I need to walk my 3 miles. I will tell you more of my adventures another time. Keep praying for us.

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