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Posts Tagged ‘guide dog’


Retro Look:

This week has been really great. I received a care package from my Sunday School class at Mabel White Baptist Church, and my son, Brian, flew up here to spend Thanksgiving with me. The care package had several items that I have needed such as lip balm and warm slipper socks plus some fun things including sugar free candy and a red University of Georgia cap. The cap was a nice touch. I really appreciated the package. I have a pic where Joey somehow managed to get the hat on his head when I had laid it on the bed next to him. He was so cute. Joey knows how to make me smile just like my friends at church.

Brian flying in was a nice touch, too. He went to classes with me on Tuesday and Wednesday. He asked my instructors questions, and they taught him some signs. The instructors explained to him all about my training and what we could expect as my vision and hearing decrease. Brian was very attentive, and all the staff here said he was a nice young man. They were amazed at how polite he was and that he said, “yes, sir and no, ma’am” to everyone. I was extremely proud of him, of course.

Thursday, my case manager-Molly- took Brian, Martin (another student), and I to have Thanksgiving dinner at the Miller Ridge Inn. It is a replica of an old inn that stood on the property and the history goes back to 1632. They have a replica town of shops that you can walk through as well. We took pictures at the stocks and listened to the band playing guitars and banjos. The food was very good, even the stuffing was good despite not being Southern cornbread dressing. Molly is very special. She really went out of her way to be with us on her holiday off, and I greatly appreciate it. I could tell that Martin, though quiet, really enjoyed it as well. I don’t think he ever gets visitors. I seldom see him talk or smile except when he is talking about sports. Martin is deaf-blind. He hears nothing, but sees a little better than me. He signs for communication; therefore, Molly signed everything we all said during the meal. Molly made sure he was included in everything. That takes a lot of time and patience, but she does it so well. God is truly using her for special work.

Brian, Joey, and I standing behind photo props making us look dressed in long dress and tux.

"Brian, Joey, and I looking dressed to kill."

Molly and Martin in the stocks like prisoners.

"Molly and Martin in the stocks."

Brian, Joey, and I in the stocks.

"Brian, Joey, and I in the stocks."

That evening Brian and I took dinner up to our room where we had an e-Thanksgiving over the internet on X Box Live with Scott and Brendan at home on their X Box 360. Their food was much better than ours, but the company was great. We spent several hours eating and talking after praying and thanking God for our many blessings. Despite being here and away from friends and family, I actually enjoyed Thanksgiving. You never know what the journey God has you on will bring, but it will always be enlightening and memorable.

I am standing next to the image of Albert Einstein.

It's just Albert and I.

I have only been to the city one other time. This past Sunday, we went to Madame Toussaud’s off 42nd Street. We toured the wax museum and could feel the faces and costumes. I have some pics of Joey and me checking things out. The statues seem pretty real.

HKNC Students standing next to Helen Keller wax figure which is sitting holding a book that has braille dots on it.

"HKNC students with Helen Keller. The book she is holding has real braille dots on it"

This is Steffy. She feels the statues with her hands to “see.”

Steffy is feeling Robin Williams' wax figure in order to see him.

"Steffy is feeling Robin Williams' wax figure in order to see him."

Yes, some blind really do this despite the TV jokes you might hear. DB tend to do it a little more, but I would say it is only for people we really care about wanting to know exactly what they look like.
Friday, Brian and I left very early by cab to the Long Island Railroad. We took the LIRR to Penn Station in Manhattan.
Penn Station

"Penn Station"


Then took the red line down to South Ferry and Battery Park.
Battery Park

"Battery Park"

There we took pictures of the Statue of Liberty in the New York Bay.

Statue of Liberty

"Statue of Liberty"

This is my son, Brian, with the water behind him.

"This is my son, Brian."

 It was about 35 degrees plus very windy. We had wanted to take the boat past the Statue of Liberty and onto Ellis Island, but there was over an hour wait in the cold wind to get tickets. I knew my asthma could not stand that, and Brian said that it was even too cold for him who stays outside in tents 24/7. We took the pictures and headed back to the subway.
This was a weird sight on the way back. The city has overtaken some things.

There is this older, very small building right next to a skyscraper. It looks so out of place.

"This building just doesn't look like it belongs there.

We rode the subway north to Central Park and toured the Museum of Natural History during the very cold morning.

Natural History Museum

"Natural History Museum"

Afterwards, we ate at the City Grill, which was very good and reasonably priced. I had an Apple Walnut Grilled Chicken Salad similar, but much better than they serve at Applebee’s. My friend, Ruthann, would have loved it. I couldn’t help but to think of her as I savored its flavor. This break gave us all, including Joey, the energy we needed to walk through Central Park. I was really shocked at how beautiful it was, and it was very strange that it was in the middle of one of the world’s largest cities. There are several large reservoirs that they allow boating on. There are pathways galore all mingling around greenways for picnicking and play. There are huge rock outcroppings where children scrambled. It was absolutely gorgeous. We saw many places that we recognized from episodes of CSI: NY, including one that was in this week’s episode that I didn’t get to see until we got back that night and watched it streamed over the internet. The area was a couple of brick terraces overlooking the lake with the lower terrace having a huge fountain next to and overlooking the water.

Manhattan Cafe where we ate.

"Manhattan Cafe where we ate."

We exited the park onto 5th Avenue, which is lined with multimillion-dollar apartments along the Central Park border where rich financial executives and many celebrities live.

5th Ave apartments in Manhattan

"5th Ave apartments in Manhattan."

Strolling south of the park, you find the famous stores and their storefront windows filled with the most expensive and outlandish fashions that I have ever seen in my life. I assure you that I was not the least bit envious. I love my simple life and fashion. If no one else does, that is tough. I have better things to spend my money on like my children, husband, and beautiful students such as ShaynePatrick. They are what make life worth living. We ended the day after dark shooting videos of Times Square

and then walking down 34th Street to Macy’s. Brian grew up loving “The Miracle on 34th Street.” I think he found that some things are better just left for memories. After riding the LIRR back to Port Washington, we ate delicious NY pizza at a local pizzeria before taking the cab back to HKNC. We were all exhausted. Little Joe ate his supper and crashed on the bed with me beside him. I managed to give him a well-deserved massage before calling it a night.

I awoke early at 6:00 am to see Brian off to the airport. He had to be back at work at the wilderness rehab camp in Ga. by 5:00 pm that afternoon. I really loved the fact that he was willing to come up, and we had such a great time. I was reminded of those days after my divorce from his biological father when it was just the two of us. We were so close back then. I hope he felt some of that closeness this week. I know I did.

After he was gone, Joey and I curled up on the bed and slept until noon. I missed breakfast completely. Of course, I merely got up, took a shower, ate lunch, and came back to the room where I slept until dinner at 4:30 pm. I don’t remember ever sleeping that much. It was worth every minute of it, though.

I wasn’t able to make my usual calls to my mom, sister, and Aunt Pat. I really missed that. So, Mom, Traci, and Aunt Pat: I love you, and I hope you had a great Thanksgiving. I also hope my in-laws, Marsha and Aubrey, had a nice Thanksgiving. I love you, guys, too. There was absolutely no cell phone signal the last few days here. We haven’t even had internet service the last couple of days. We have to wait until Technology staff comes back Monday to get it fixed, so this post will be late.

As you can see, there was a lot to be thankful for this Thanksgiving. God is truly good to me. Some may say how can you say that when you are going deaf and blind, but I tell you that I see and hear God now more than I ever have before. Life is filled with heartache and disappointment, but with Jesus living through us, it is also filled with great joy and accomplishment. I love my Jesus with all my heart. I don’t ever want to live again without Him guiding me. He is the reason I bother to wake up every morning. He is the reason I am living. I can do all things through Christ who strengthens me. So can you! Take care this week. I am working hard to come home by Christmas, so keep praying for me. I really need the strength. There is still a lot to learn and overcome.

God bless you,

Renée and Little Joe

P. S. That special person I told you about last week who needed to find their way back to Jesus. Well, they made it to a church this past Sunday. This person almost changed their mind, but prayer helped to get them there. Keep praying for this person. God really has a plan.

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Still looking back to my time at HKNC. This post was made the weekend after Veteran’s Day in October 2007.

This has been a whirlwind week. I got a new schedule change on Tuesday. Of course, Monday was a holiday, and HKNC was closed. I stayed in the residence playing my bible .mp3’s and listening to music until time to play Xbox 360 with my husband and “friends”.  I have a difficult time understanding audio files and music files, but I will keep on trying until there is no sound to hear. Before Scott and I play Halo 3 and other video games we always meet in video chat. We both have web cams connected to our Xboxes, so we can see and talk to each other. We go over mail and other occurrences of the day. I also teach him a few signs. Here is a pic taken from the Xbox, so you can get a better idea.

"Scott and I talking over X Box Live Video Chat"

"Scott and I talking over X Box Live Video Chat"

In Technology class, Bill taught me more about OpenReader. This is a software that will read anything it can scan. It uses flatbed or automatic document feeders for multiple looseleaf pages. On a flatbed scanner, I can put a textbook. It will scan the pages and then read it to me. Then a student would be able to ask me a question about a specific section or I could further explain to them the topic they had read and not understand. I can even go into edit mode and add additional text to specific places on the page. I can read a certain paragraph, sentence, line, word, or even letter. I can even turn the page into braille and emboss with a braille embosser (printer). I can save the pages and print them in various ways including any additions I added for the student, for instance. I like the fact that I can do all of this with the braille display and never hear or see anything and still “read” what is on the page. All the text is printed out on the braille display as well as read by JAWS. I will always be able to use this program. We also finalized all plans for the rest of my training and specifically for the Evaluation meeting on Friday, the 16th. I will tell you more about that later.

In mobility, Natasha went over stairs again with me. I did blindfold with only the cane. Natasha holds Joey out of harness. I found the stairs fast enough. Once in the stairwell, I used the cane to find the upstairs by sliding the cane until it hit the step. I used the cane to slide the length of the stair to see how wide the staircase was. Then I measured the height of the step by lining the cane vertically to the step and and then sliding the cane while in contact with the step until the cane rested on top of the step. I then measured the width of the tread by sliding the cane tip back until it hit the side of the next step. This gives me plenty of information to help me place myself on the steps safely. Then I extend my cane hand out horizontally with cane vertical and lock it straight. This allows my can to hit each step as I go up the stairs. When I no longer hit another step, I know the next step will be the landing. When I get to the landing and before I step up, I clear my step. That means that I make a short arc just a bit wider than myself and straight back to between my legs to check if there is a hole, object, or whatever in my way. I wouldn’t want to step on those items we tend to leave at the top and bottom of stairs for carrying later. Now going down, Natasha had shown me a different method than I had learned before. I actually felt that when I got it down that I would like it better because I never feel quite sure that I am at the bottom level with the method that I use. My previously learned method which has its advantages is about placing the cane in the hand opposite the railing and then placing it at the edge of the top step across the body at an angle. I then remain in constant contact with the stairs as I move down. The cane slides across and down each step helping me to feel a little safe, but I never know for sure if I am at the last step or not. I have misjudged before and fell. Natasha’s method when done correctly lets me know when I hit bottom. You hold the can in your hand opposite the railing. Place it on the next step down hanging over the edge. Then pick it up slightly holding it vertically and your arm straight and horizontally. Then you walk down the steps. When I hit the floor of the landing, I know the next step will be that landing. I don’t have to be worried if I judged right. I practiced several times until Natasha was comfortable with me doing it safely. We will revisit it again for practice.

In Vocational, Ginger and I emailed Perkins school for the Blind and their division for deafblind early childhood education. We had for specific help and a curriculum for my 6 year old deafblind child, ShaynePatrick. They have gotten back with me and will begin to work intensively on teaching me how to work with him better the Monday after Thanksgiving. I am very excited. I love the blonde curly-haired boy. He is so delightful and very intelligent. Here is that promised pic of Ginger and Elissa. Elissa is back and doing better.

"Ginger and Elissa preparing for my evaluation meeting."

"Ginger and Elissa preparing for my evaluation meeting."

 
Wednesday was a full day in CLC-communications. I have almost every teacher in the department now as they intensify their emphasis on sign language. I also have Lois then for Braille in the afternoon. Amy is my new instructor. She worked with me on the grammar and syntax of sign which has a lot to do with facial expression. I worked so hard trying to get my eyebrows to go up for yes/no questions and crunch into wrinkles for the 5 w’s and how questions. I actually got a cramp between my eyebrows. Toward the end, I couldn’t hold the eyebrow position to complete the entire sign. We all laughed so hard.  Good imitations…

My case manager and I told each other stories in total sign and no voice. It is a lot harder than it looks. My kids would be embarrassed if they knew which stories I told.

Now for the best two stories of all.

I will start with the all important meeting. Most of my instructors were there and Scott, my Vocational Rehab Rep and her staff, and Barbara Chandler, the HKNC Southeast Regional Rep were on the conference call with us in the meeting. I could not hear the phone or much in the room, so they had an interpreter with me doing tactual sign. My VR rep is totally deaf along with one of her assistants so we heard the same male interpreter voice for them. My instructors and I told what I had been doing so far and what requisitions they would like for the state of Georgia to pay for. I have to admit that my VR rep is starting to sound like she is backpedaling on her promise to get whatever Helen Keller recommends. She kept stressing that they would only pay for what is specific for my job. I can assure you that that is all that I have thought about. I need no help cleaning my house or cooking for myself. I can do that even totally blind and have proven it. However, I do teach several of my special needs students how to cook, wash clothes, etc. I specifically asked Independent Living to show me ways to teach students to cook in the safest manner for me and them. I don’t want to get them burned if I am trying to teach them to cook. I also have to wear light filters (sunglasses) indoors and out because I am extremely light sensitive. I teach my special needs students indoors and out. I even teach them how to swim or do water therapy. I can’t do that without my glasses. HKNC has the only ones that I have found that really work. I pray that God will help them to understand why I need all of these items regardless of cost. He knows how much debt we are in as a family because we have had to purchase so much ourselves just to get me as far as this.

The other part of the meeting was when do they expect me to finish my training. Well, all of my instructors agreed that if I continue to do as well as I am now I will be able to go home a couple of days before Christmas and not have to return!!! I am so excited. Sign language is the only area that I am worried about, but my instructors are saying that I am being too hard on myself. They say I could sign so much better even now if I didn’t get so nervous. I will definitely work hard to finish my sign in time.

Well the other neat and to me best part was a conversation that I had this week with one of the people here. I will not say her name, position, or even when I talked to this person because this was a very private conversation. However, God was definitely in this. The first week I was here I talked with this person. I was crying a lot, but God kept whispering in my spiritual ear that I needed to be ready to help this person. He has something for this person to do and some place for this person to go. He needs this person to allow Him to get them ready. Personally, I didn’t want to hear that then. I actually told Him, “Please God, not now. I just want to go home.” He seemed to reply, “I know, Child, but soon you need to be ready to listen.” Well, I did get ready to listen after a few days and have waited to see if He had something for me to do. That time came during this week. I was talking to this person again about HKNC stuff for me, as usual. I heard His voice say mention my name. I was like what? How? I thought (you take a wild guess how) and said, Jesus is where I get my strength. This person looked so funny and said, “I just thought that same thing.” Anyway, we had a long, long conversation about this person’s belief in Jesus. This person is a Christian, but since working at HKNC and living where they are, they had strayed. Again, I heard God say. I have something for you to tell them. They have already been feeling this, but need you to tell them it is from me. I simply said. It is almost time for you to go somewhere else. God has a plan, but you aren’t ready. You need to go back to church, and you need to begin studying my word again. This person was quiet for a few minutes. I was trying to see what the person was doing but couldn’t. Finally, they said I’m crying right now. In the last few months, I have been feeling like I need to leave. I have been feeling like I need to go back to church. I even went recently, but then got nervous and turned back around. I am going this Sunday, I promise.

There was more to the conversation, and I got to really see how God has been working in this person’s life both in the past and recently. As far as I go, I have made a lifelong bond with person. I know it. We will be friends no matter how far apart we are. God is sooooo awesome! How awesome is He!

I am going to leave it at this for now. Joey is fine. He is learning to force me to walk slower so I don’t wheeze. You can’t get any cooler than that! I love you guys, and I will work hard to be home for good by Christmas.

Renee’ and Little Joe

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More of my time at HKNC.

It is time to write another entry. Things have been going pretty well. I did have some asthma problems this week brought on by weather and cigarette smoking. I had mentioned to staff earlier that students and staff were smoking at the doorway of the residence hall making my breathing more difficult. The weather for a couple of weeks was “hot” (NY style, not Ga) and humid. I was comfortable and my asthma was better than at home, so I had no real complaints. However, the cigarette smoking at the doorway was proving to be very difficult. The door is always locked, so you have to ring a bell and wait until someone lets you in. You can’t move away from the doorway because the staff can’t see you and assume someone already let you in. Therefore, you are stuck sometimes several minutes standing there breathing in the crud in the air. Staff, upon my request to ask people to move back to the designated smoking area about 25 ft from the door, always said they would look into it. The situation didn’t seem to change until Wednesday night when I had a severe asthma attack about 9:00 p.m. My breathing remained erratic all night despite the rescue inhaler and the nebulizer machine. Staff thought they would have to take me to the emergency room. No one has smoked at the door since. It turned cold Friday afternoon and there has been no smoking since. Funny… When it was warm, they felt like they had to have that cigarette every hour. When it is too cold to stand, they find they can go hours without one. I am just grateful that my breathing is better.The week of classes has been fine. I reviewed signs in my sign class and learned a couple of new ones. Braille is better than sign class. I am learning much faster. Of course, part of that is I can accomplish a lot more alone when studying braille independently. Sign is a little harder to study alone. I now know about 87 of the 189 contractions that I have to learn for Grade 2 Braille. Even better than just knowing them, I recognize them most of the time when reading and I can type them on the Perkins Brailler. I transcribe Braille several hours a day. Although, I think I need a break. I woke up the other night with my hands in the air reading Braille in my sleep.

"Perkins brailler which is a typewriter device for braille."

"Perkins brailler which is a typewriter device for braille."

 I am finding it harder to study my sign language though. It is hard to get the staff to sign to me tactually or even regularly. The deaf staff know that I don’t know ASL, so they get a hearing person to deal with me. Hearing staff seldom sign because they think I don’t need it. As one staff member stated, I make it look so easy when I talk and seemingly hear fine that they don’t realize that I am getting headaches from trying to see, hear, and guess what people are saying. I ask them to sign tactually with me (I really don’t get much from regular signing anymore. I can’t see it well enough), and they will for a few words, but then gradually stop and go back to using just voice. My CLC (communications) teacher sent out a mass e-mail stating that I needed total communication (meaning voice and sign) and the sign needed to be tactual. I don’t know who all was on her list or when they check their e-mail, but as of Sunday, today, there has been no improvement. I practice signing everyday by myself and now once a week with Steffy because one staff member noted that would help and arranged her schedule to allow it. By myself, I talk and often pray using just ASL. That is good practice, but it doesn’t help me with recognizing other people sign or to really carry on a conversation. My schedule changes next week, but they actually took off the lady who has been my sign instructor. Maybe Val wants to do my sign instruction. That will be great. I like Val. We get along great and I learn quickly with her. She recognizes my learning style and plays right along with it. I like Donna, the one I have had for two sessions now, as well.

"Donna was the one who turned out to be the best ASL teacher I had."

"Donna was the one who turned out to be the best ASL teacher I had."

I don’t know why they made that change. I guess I will find out eventually.Going along with the conversation that sign is slow, the topic of Christmas vacation and when I will be going home for good, etc. came up this week since all vacation plans have to be made soon. Most staff wouldn’t talk to me really about when I might plan toward be done with training. I realize that is hard to pinpoint because it all is based on how fast I am learning. Val did tell me that her goal for me is to be completely independent as a signer, braille reader, traveler, etc. as a totally deafblind person. Therefore, she told me that she will not feel comfortable with me going home for good until well after Christmas. That makes it even more important to me to get more sign instruction since independent study is not going to get me there very fast at all. I will be ok with being here if the training is meaningful and more than what I can do on my own. This is very disrupting to my personal life as well as my school life; therefore, I don’t want to be here doing stuff that I could do just as well or better on my own at home. So on that note, Christmas vacation was discussed. I can’t afford to go home at all if I have to pay for it. That is why I will be here at Thanksgiving. Vocational Rehab people told me that they would pay for me to go home at Christmas and return to Helen Keller. Hopefully, they will keep their word. My case manager has stated that she feels for reasons of traveling safely and with less stress and to have the emotional time away that about 3 weeks will be good. Her dates are to leave on Dec. 15 or 16 and return on January 5 or 6. I hope Vocational Rehab agrees. They have to pay for the days away just as if I was here, so they might not like that much time off. We will just have to wait and see.

"Joey in Ga hat that my Sunday School class sent me."

"Joey in Ga hat that my Sunday School class sent me."


Joey is feeling much better this weekend. I discovered that I heard very little of what the doctor said last week and the staff member who went with me didn’t give much of the information to other staff. Therefore, the nurse called the doctor and got all of the information. The medicine was not being given properly. Although it wasn’t hurting him, it was not helping him very much either. We are now on the same page. It did show me though that it is hard being deafblind, since a lot of people assume you are also mentally low functioning. I had tried to get the doctor to explain to me what needed to be done, so I would know. However, he didn’t feel comfortable with that and no one wanted me to give Joey his meds; therefore, I wasn’t included in the loop of information at all. Since I am not retarded at all, I do not like being treated this way. I might can understand why I shouldn’t give the meds to Joey since not seeing well might cause me to accidentally hurt Joey or just do it in a way that only waste the meds and not help him, but I want to know what is going on. That is a fear for me about going deafblind. I see it even here at Helen Keller, although better than the rest of the world. People tend to do things around a deafblind person not do it with them. They want to take care of things themselves for the deafblind person, not help the deafblind person do it for themselves. I don’t want to just sit here while people take care of me and make decisions about me without including me in the process. My mind still works just fine. I can make my own decisions about what and how things are handled. In a situation like this, maybe being mentally handicapped is a blessing in disguise. These people don’t understand enough to be unhappy that other people are controlling them and their lives. I understand that perfectly and I am not happy with it. I see that same frustration in Steffy only magnified tremendously. At times, she lashes out in anger. The staff speaks of not knowing how to help her be happy. It won’t take away all of the anger and frustration, but it will be a start if someone would just take the time to explain, not as you would a child in almost baby talk and as you are doing whatever, but before and ask this is what needs to be done and why. How would you like to handle this? I know that works better for me. Sure it takes more time. However, as a thinking human being, I deserve that time.This turned out to be more of a rant than mere boredom. Sorry. It is difficult being in a setting where I have to inform them of how much and what I ate, when I am taking Joey to busy or the dog run, going for a walk, etc. and even no, you can’t because we don’t have the staff to maintain your safety. Understand it, I do completely. Liking it when I am use to deciding everything and doing whatever myself, I don’t. It certainly makes me appreciate my ability to still be independent away from here even more. I am glad that God still grants me that. I hope it continues. I also pray that if it doesn’t that He will give me the strength to cope.

It has turned cold, and this Ga girl is feeling it. The staff laugh, of course, and tell me that I haven’t seen anything yet. My hands and feet are already cold. Brrrrrrr.Some of you are wondering if I was able to go to church today. No, there was another trip planned, so I was here. A friend of mine from church, Jana, is arranging to have the Mabel White services put on dvd and then sent here to me. I really like that because I can feel a part of the services and the choir even though I can’t be there. My mobility instructor did research some churches for me and found an independent church here that although not Southern Baptist seems to have similar beliefs except for the not being part of a greater association, and they have a similar worship style. The big problem is that it is farther away and I would have to take a taxi there and back. I can’t do that alone yet because she has to do the mobility deal with me where she goes with me and makes sure I can get a cab, orient me to the lay out of the church, get back to a cab pick up, etc. before I can be approved. The other problem is the cab fee each way. They don’t think much about it because taking a cab here is every day life. Spending 50 bucks to go somewhere one way is nothing to them because they have no choice. I, on the other hand, can’t see paying that every week to go to church. I can get some Helen Keller discounts to help some, but it is still expensive. I might try it once or twice since it would be fun and I really want to go to a good church, plus it could be well on the way to helping Val see me as an independent deafblind traveler. More than that, no because I would rather use the money more wisely.

Well, I guess that is it for now. I have more communication cards on travel, shopping, church, etc. make for Val’s class. As always, I am thinking of you all.

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My Look Back In Time Continues:

Well, the days are getting colder, but I am keeping really busy. On Sunday, I listened to another dvd from MWBC. That really gets the week going well. Then Monday morning, I had a phone conference with my vocational team and my WCA school staff. That went really well. At least it did after I quit crying at first. I really enjoyed hearing their voices. It was very nice of them to take time out of their already busy schedule to help me with not only school, but now with my training here as well. My vocational team thought that they could learn to help me better by hearing from my staff what they thought I had trouble with in doing my job like hearing on the phone, talking to parents, sending e-mails, writing, doing bills, etc. It was very helpful. I didn’t even realize a lot of what I was having trouble with. It was really good. We will be meeting again next Monday, too. I am really looking forward to hearing them again.
In Communications, we were working with tactual sign language more. My instructor, Val, is putting more emphasis on braille and the SBC (small braille communicator) as my main mode of communication and rightfully so. There are not many signers around me at home, but I still want to learn it because I know that braille and typing won’t always be feasible like at night or for quick questions and comments when it is too much trouble or not enough time to get out the SBC. However, even with tactual sign, the SBC, etc., my biggest fear is that I think alot and I like to talk about many subjects and many deep subjects. How will I share with others these in depth conversations? Nobody wants to type for long conversations and sign seems very limited, especially tactual. I don’t want to be limited to conversations about the weather or what I need or want at the moment. I guess I am worried about that. My great-grandmother was blind and she didn’t hear very well, so people would come and ask her things about how she was and what would she like to eat, etc., but that was about it. She would sit alone for many hours and just talk to herself. In fact, many people would kind of laugh about her sitting and telling stories to no one. I probably did, too, but now I am afraid that I might wind up being alone and talking to myself, too.
Anyway, my sign teacher has me and another student blindfolded and asking each other questions in tactual sign. We have started at 5 minutes at the time and are building that time up gradually. It is very frustrating. We tend to sign too fast or our signs are too “muddy.” New signers don’t know the signs very well, but even native signers can have unclear signs. They get sloppy since they do it so much just like hearing people when they talk and speak in quick phrases or “Southern drawl.” It is hard to understand lazy signs, especially tactually.
We had Big Town Hall meeting this week, too. I got drafted to be on the Town Hall committee, so I had to help run it. I didn’t really want to, but I speak in public all the time. Town Hall Meetings are a way to run small governments or how bigger governments find out what the people think about an issue. Here, Town Hall is how the residents handle problems about residential living. The issues for this meeting were smoking, plastic cups with covers in the cafeteria, Thanksgiving food baskets, etc. People made suggestions about how to enforce the smoking regulations and still be fair for the smokers. They gave suggestions like lights for the night-blind smokers, paths for the visually impaired to trail, shelter for inclement weather, etc. The plastic cups with covers were because many students while traveling from the food line to the tables spill their drinks soaking their food with whatever their drink is for the day. Covers would help that. The cups slide as they walk and feel their way to the tables. That is unpreventable. The spills aren’t. (As a side note here, New Yorkers say you get on line to get your food rather than you get in line. It took me a week to really figure out what they were talking about.) The Thanksgiving baskets are the current service project the students are doing for the community. We have two families in the community we are helping to feed for the holidays. Now, you probably would think a Town Hall meeting would be a big room with a speakers’ table and rows and rows of chairs for people facing the table, right? Well, here that wouldn’t work. All of the students are visually impaired and hearing impaired or deaf and visually impaired or deaf blind. Therefore they need interpreters and interpreters interpreting in different ways. In some areas of the room, you have two chairs facing each other. That is for the deaf blind with their tactual sign interpreter. Then you have small groups of chairs in a semi-circle around one chair. That is for the deaf and visually impaired who can see signing at short distances. You also have chairs side by side. That is for the blind and hearing impaired who use FM systems. Their interpreter sits beside them speaking into their FM microphone. It probably looks very messy and unorganized, but is actually very structured.
In mobility class, I had to leave Joey with my communications instructor, and Joey’s friend, Val. He didn’t really like that, but Val played with him and rubbed his belly. He put up with it. Natasha, my mobility instructor, took me to a big Bed, Bath, and Beyond store that is two floors and has an escalator up to the front doors. It even has an escalator to take the carts up and down. It was strange, but very neat. Anyway, I needed to learn how to do escalators safely with a cane. The technique basically involves using the cane to find the grate that is at the top or bottom of the escalator. That is how I know I am at an escalator.

This is Natasha, my Orientation and Mobility Instructor at HKNC.

"This is Natasha, my Orientation and Mobility Instructor at HKNC."

This is me using my cane to find the escalator grid plate.

"This is me using my cane to find the escalator grid plate."


I also have two communication cards that say take me to the a) up escalator or b) down escalator. To verify direction, I find the handrail and feel which direction it is going. Once I have the one going in the direction I want, I use my cane to find the edge where the steps go in or come out. I put the tip of the cane there and hold it steady so I can feel the cane bounce when the separation between steps goes by. That is my clue to quickly step onto the escalator holding onto the railing with my right hand. Then I move the cane up or down a couple of steps (depending on which direction I am going) to give me plenty of warning about when it is time to step off the escalator.
When my cane detects the step flattening out, I know to get ready.
When the tip hits the edge of where the step goes into the floor, I move my cane in a sweeping motion over the grid to make sure nothing is in the way and then I quickly step off the escalator. Escalators are very scary when you can’t see, but this technique makes them easier to navigate. I have some pics here of the important parts.
Finding the entry point onto the escalator.

"Finding the entry point onto the escalator."

This me safely entering the escalator.

"This me safely entering the escalator."

Here I am clearing the step to make sure it is safe to exit.

"Here I am clearing the step to make sure it is safe to exit."

In braille class, I am still driving me teacher crazy. She jokingly talks about not having enough work for me to do. Of course, she has no problem pulling out more. I know enough contractions now that all paperwork in coming to me in contracted braille. If I haven’t learned the contraction, I usually can still figure out what it says by content. Speed is improving slowly. It takes me about 15 mins. to fully read and comprehend a braille page which is bigger and squarer than a regular sheet of paper. It used to take me much longer to read, and I would probably not get the meaning too well.

Sarah and me. Sarah is on the left.

"Sarah and me. Sarah is on the left."


Friday evening at snack time which is about 7:30 pm each evening we had a party to say goodbye to a friend of mine. We had just gotten where we could really talk to each well. I finally knew enough signs for her to understand me. That is my typical luck. Anyway, her name is Sarah and she was born deaf with Usher’s Syndrome. She is beginning to have serious vision trouble and was here for the two month evaluation to see if she needs further training now or later. She is nineteen and graduated this year from her state’s school for the deaf. She is very sweet. Sarah fell in love with Joey and now plans to go to Leader Dog, Inc. in Michigan in January to get her own dog. (Current day update: Sarah graduated last year as the first DeafBlind Pastry from a noted culinary school. There is a lot a DeafBlind person can do. Oh, and she did get a guide dog, too.)

Here is a picture also of my friend, Steffy, who is totally deafblind that I have told you about being so patient with me as I learn sign. Steffy in in the center.

A few students including Steffy in the middle sitting in the residence hall lounge at snack time.

"A few students including Steffy in the middle sitting in the residence hall lounge at snack time."

Finally, my friend, Jane, from South Carolina. She is blind and hard of hearing. She and I get along since we understand each other so well (the staff never understands our expressions.), and we both know how cold it really is!

This is Jane.

"This is Jane."

We went to IHOP today for breakfast. I ate too much. This was very welcome after having so much chicken salad, tuna salad, and turkey burger for meals here. They serve way too much pasta for diabetics. I am afraid I am going to turn into a chicken or a tuna fish. Anyway, Steffy was so sweet in the van on the way back. She asked me tactually what I ate and how much. I signed back I ate pancakes and eggs and bacon and I ate full and I feel like blow up. I wrote it that way on purpose my English experts. I signed it just about that way. Boy, Steffy is patient with me!
And also, here is a pic of Steffy and I communicating with tactual ASL.

Steffy and I communicating with tactual ASL.

"Steffy and I communicating with tactual ASL."

Well, I think I will stop now. I wouldn’t want you to get bored and not want to come back to read more of our little adventures. Keep praying for us. Joey’s ears are better, but now that it is cold he has another problem. It took almost 30 mins. for him to do his “busy’s” this morning. He kept looking between his legs trying to figure out why nothing was coming out!
Bye for now and God bless you and know that we are both praying for you.
Renee’ and Little Joe

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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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Touch Points
By Renée K. Walker
Spring is here, and it has come in roaring for the South where I live. We have experienced the deadliest day of tornadoes since the depression. F3 and F4 tornadoes touched down within just a few miles of my home. Other tornadoes just as strong or stronger touched down in my state and surrounding states killing hundreds. I am so thankful that my family and I are safe. I also pray for my neighbors and others in the South whose families weren’t so fortunate. My topic of choice before the storm and even more so after has been of safety. I have experienced some incidents recently and in the past that have frightened me or at least unnerved this former law enforcement and prison teacher which at one time was very hard to do. Being DeafBlind is enough, of course, to shake the steel nerves of most anyone, but there should be some feeling of safety in one’s surroundings.

As a teacher in juvenile and adult facilities, I have been in very dangerous situations before and even had my life threatened on more than one occasion. The training I received helped me to stay calm and do my job following certain protocols to maintain safety for staff and clients of the facilities. If you fell apart, you did it well after the fact, but you learn to deal with the adrenaline and often become a little addicted to it. Even staring down the barrel of gun didn’t have me shivering in fear when I had a student with me several years ago. The fact that I didn’t react with such uncontrollable fear actually became a negative during the man’s trial because defense attorneys could twist that to reduce the man’s charges and eventually his sentence terms. But becoming Deaf and Blind, my steel-hardened nerves melted quickly, and I suffered panic attacks for the first several years. Even when I was relatively calm, my personality was changed to a more withdrawn and fearful demeanor. Though deaf for many years, the vision change was subtle and slow until the very end when I first realized the loss by a drastic and sudden loss leaving me in a dark and silent world. My fear and personality changes were understandable. The changes were further heightened by the reactions of those I would meet in my new world. People I knew and loved often withdrew or left completely unable to handle the changes in our relationship. Strangers either avoided me or drew close to see the novelty, and a few times sought to deceive or even harm.
I have had cashiers steal my money. People on the street come up to me and wave their hands up close in my face, or if they notice that I sign or can’t understand that someone is speaking to me, come up near me and scream or make a loud noise. People can be very weird. These can be annoying if I even notice them, but I am not particularly frightened of these strange people. The ones that frightened me are like the group of young children who spotted us or actually my guide dog in this case and began to run circles around me screaming. I was later told they were screaming about the “bad dog” and “Get the mean dog out of here.” They ran around us and would swoop in kicking my dog or me. I was punched in the back. My dog was kicked and punched on his back and in his side. These were just children ranging in age from about 4 to 8, but children can be quite strong. Adults around us did nothing and that included store personnel. I kept screaming for someone to grab their kids. No one moved. No one came to my rescue. My husband was with me, but we were raising another guide dog puppy at the time, and he had Anchor. Anchor had been showing signs of really needing to get outside, so my husband was trying to do that thinking I was very close behind him. When my husband realized I wasn’t there, he put Anchor in his kennel in the van and ran back to me where I was doing my best to calm my frightened guide and move out of the store. My husband spoke firmly to the children who ran off towards an adult about 10 feet away who seemed to be glaring at him. My husband didn’t give the adult time to say or do anything and led me quickly out of the store. My guide was traumatized and for several months I couldn’t work him because if children came near he panicked. Southeastern Guide Dogs, where I had gotten the dog, worked tirelessly trying to help me get my beloved dog back to working state. Little Joe is now fine, but it took a lot of work from both of us.
In the years since, I have had other incidents happen, too. Once, on vacation in Florida, my life was verbally threatened at a hotel by several people who took offense to my dog.

It isn’t all about my dog, either. A few years ago, someone rang my doorbell. I was expecting a friend at that time, so I opened the door. I normally block the door with my body because I had four dogs at the time and one of them tends to bite when people arrive for some reason. I felt a shove of the door into my shoulder as I instinctively resisted realizing my friend wouldn’t do that. My dogs reacted loudly and physically and within seconds the shoving stopped, and I slammed the door shut. Was that someone trying to harm me or just get my attention in the wrong way? I really didn’t know. I couldn’t call the sheriff because I was totally deaf at the time. It happened very quickly, so I didn’t have a lot of time to get very scared. I was able to convince myself afterwards that it was no big deal. After that, we invested in an emergency call system with 24/7 monitoring for other health reasons. I used it just a few months ago when the doorbell rang, and I wasn’t expecting anyone. Since the first incident, I had learned to not open the door at all if I wasn’t expecting someone. I also ask all my visitors to email or text me as they arrive or develop another signal with them to let me know the person is who I am expecting. When this person or persons didn’t leave quickly and I noticed the dogs acting like people were in the back of the house, I used my system. Sheriff was called and arrived. It turned out to be a friend, but a friend I hadn’t seen in several years and was unaware of my health changes. The sheriff’s deputy actually stated that I should be in an institution or not allowed to ever be alone at the very least. That was humiliating. Getting an emergency call system had been tough for me, since I felt elderly and incompetent, but it was useful, so you learn to deal with it. Now I was being told that I shouldn’t be taking care of myself at all and possibly locked away.

Just a few weeks ago, a trip to a local college to walk with my guide dog and another family pet took a bit of a frightening turn. We were walking across a large field section of the campus. Due to construction, we were away from the usual path, but it was an easy field to walk. My husband was in front with our pet. I was behind with Little Joe. Suddenly Little Joe came to a dead stop. I stopped, but I couldn’t find any immediate obstacles. Little Joe didn’t try to move me in another direction. He just stood perfectly still. All of a sudden, I felt Little Joe move into me hard and then jump to the side and back of me. I also felt his body shiver with fear. This scared me considerably, since I had no way of knowing what was happening or about to happen. My husband reached for me and pulled me further to the side as I explained that something must have hit and scared Little Joe. My husband explained that a woman had approached us walking quickly in a power walk method carrying a large, broken tree branch like a walking stick. Instead of going around us, she plowed forward straight into us and begin swinging the large branch side to side very fast and loudly and forcefully saying, “Out of my way; Out of my way.” In the process, she had hit little Joe on the backside with the stick. I was frightened and angry, but I had no recourse as she just walked away ignoring our calls.

These incidents and others over the years have made me wary when I am out, but I have continued to try to explore further into my dark and silent world. I don’t want to be so frightened that I sit in my safe chair in my little room at home. I want to live my life and live it well. My husband and some friends worry about me and want to know how to handle these situations, but how? You don’t expect people to act this way, and you certainly don’t want to assume that everyone is out to get you and bully people who venture near me. Not only would that be wrong, but it would probably result in lawsuits or arrests. Now we remain on guard when out, but we have no idea what we really should do to handle these situations. We just will handle them as best we can as the situations arise being ever watchful. Life is stressful and even frightening in this dark and silent world just fearing the unknown objects, drop offs, and barriers. I should be able to find safe and helpful hands in the dark, don’t you think?

Yes, for every person that has tried to drive me into seclusion, there are dozens of others who shower Little Joe and me with blessings every day. Those are the people that keep me moving forward in strength through the dark silence.

If you have comments about this topic, you may write a letter in braille or print to Renée Walker, 143 Williamson Dr, Macon, GA 31210; or you may email me at rkwalker@wynfieldca.org. You can also read and comment on my blog at http://www.deafblindhope.wordpress.com. You can also check me out at http://www.facebook.com/reneekwalker.

Published in Spring 2011 edition of the Good Cheer magazine, an international magazine for people who are DeafBlind by people who are DeafBlind.

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This past weekend on Sunday I went geocaching. Geocaching is a hobby where you use a GPS to find your way to a cache or hidden box. Geocaches can be found in wooded and urban areas. The location doesn’t matter. The box itself is sometimes empty except for a logbook to sign to show you found it. Sometimes there are items inside that you can choose from as a souvenir and leave one of your own in its place. The fun is in the finding of the little hidden treasure and exploring the outside world. There are a few million geocachers around the world, so this is a very popular sport. I haven’t done it since I lost my sight, but I was really missing it. I have been wanting to try it again as I have been gaining confidence exploring the world around me again. Question was how to make it accessible in my new circumstances.

As the popular quip goes, there is an  app for that. The IPhone 4 as as an app for geocaching. With the accessibility of the IPhone,  I can access a lot of the information, though not all, with my braille display. If the app developers  and cache owners provided a little text information about where their caches are it would be even better. We found many caches that were within a short distance from our house including one that is within walking distance.

We chose the sunny day of Sunday out of whim and took off to see what we could find. One was at the beginning of a new subdivision that used to be a wooded and open field area just a year or so ago. They are now doing construction right at the cache site, so my husband acting as my Support Services Provider, SSP, for the day decided that Little Joe and I needed to wait on the sidewalk. He found the cache right about where the GPS said it would be, but rain and construction had caused deep eroded ruts and construction objects like iron pipes prevented me from safely getting to it. My husband took a picture, showed me the cache that consisting of a slightly soggy logbook in a fishing tackle box, and then used the phone’s app to record our visit to the cache including a picture uploaded to the international geocaching web site. After returning the cache to its hiding spot, we then headed for the next cache.

The next one named “Bridge over the River Kwai” in reference to a bridge at the site and an old Vietnam movie by the name had steeper and wooded terrain. Joey amply led me around ruts and rocks and down the steep hill safely to the bridge over a creek rushing fast from the recent rains. We crossed the bridge, and Joey helped me navigate around a huge boulder about the size of some small cars. Behind the rock, Joey helped me find a hollowed out tree stump. I felt around with Scott and Joey’s eyes watching for my safety until I found a red piece of cloth with string attached to a waterproof container about the size of a small camera bag. Scott signed to me that the container was army green with a label stating, “Official Geocache. Please do not remove.” I opened it up to find a logbook and several types of little toys including a ball and some sticky-feeling plastic figures. Scott said the sticky feeling was normal. I remember making squishy, soft plastic toys with a kit as a kid. Scott said that was kind of what these were. We took pictures of Joey and me with the cache and then used the app again to register that we found it, and then I placed the cache back into its hiding spot myself. I have to admit that I was thrilled at having made the find and having traversed the terrain with Joey to get to the spot.

The third one we went to was called, “Does this Cache Make by Bass look Big” in reference to the location in the woods next to Bass Pro, the big fishing and hunting store franchise. It was in the woods at the end of a road where the pavement just goes off and stops in preparation for possible shopping center expansion. There was a huge hill. Scott wasn’t sure if I could make it down without falling. Well, I was excited, so I showed him that I am not too old to go down a hill the best way- sliding down on my butt! I slid somewhat fast, but it was fun and exhilarating. I made it to the bottom with Joey happily jumping behind me. The only damage was a green and slightly red clay mark on the seat of my pants. One of which I haven’t had since I was a kid. I felt remarkably young again. I wasn’t going to ruin things by thinking about how I might feel the next day, though. We looked, but where it seems the cache is was not a good place that day. There was a little drop off and a creek with a little climb up to the next bank. I could do it probably since I was just a few years ago hiking and backpacking with residual sight. The problem was that the recent rains made it too muddy to try that day.

We will go back when the ground has dried out, but I was just thrilled to be doing something so active and as independently as I possible could do. Yes, I need an SSP now, and I won’t be able to actually get to every cache myself, but this is a hobby done best with friends and family anyway. With some more accessible and safe locations, I wonder if other blind and deafblind would like to do this fun and healthy activity.

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Touch Points

By Renée Walker

How many of us have had problems getting what we need due to communication issues? Despite laws that are in place to help equalize education, entertainment, legal, and medical worlds, how many of us still have trouble accessing the world around us? In this rural area that I live, I have encountered enough problems to last me two lifetimes. Growing up hard of hearing as a child to deaf as a teen and young adult, I thought I knew plenty about the problems caused by the inability to fully communicate. When my vision problems became an issue that couldn’t be ignored or overlooked, I just didn’t realize what I was about to face. Coping with the loss of vision and eventually independence was hard enough. I just didn’t know that I would have a struggle just to see a doctor and be able to understand and act on my own behalf.

I think my first clue was that people didn’t know what a guide dog was at all. Stores, banks, schools, churches, and malls all refused to let me enter with my guide dog. It was a repeated effort of education with the help of my guide dog school, Southeastern Guide Dogs, Inc. that finally seemed to ease the travel issues over the first couple of years. As I learned to be more independent through travel and then after gaining more control from study at Helen Keller National Center, I found that I needed to face some serious health issues. I had been seeing doctors before for my chronic issues, but now things had changed. Needing a tactual interpreter to communicate my health problems with a physician became an absolute necessity. None of my preparation learning about communication cards, interpreting services, getting used to discussing private issues through a stranger helped me to cope with the shock that the medical agencies here didn’t seem to know anything about interpreters much less the American Disabilities Act. I tried to educate each doctor with a copy of the law and a list of interpreting agencies for the area which weren’t many and only a couple of interpreters from those agencies comfortable enough to agree to tactual interpreting. Every doctor’s office I had and new ones that I tried to go to for new or worsening symptoms or to replace doctors were now refusing to provide me with an interpreter. My procedure was to call and ask for an appointment. I didn’t have a problem getting an appointment, but after arranging a day and time, I would then state that I needed a tactual interpreter. Many times I had to explain what an interpreter did and then what a tactual interpreter did. I would explain how they went about finding one and requesting the service. I told them how they were responsible for the fees, but ADA law allowed them to take it off under operating expenses or overhead. I always offered to mail or fax the information to them and mentioned telephone numbers of agencies that they could call and ask questions. I also referred them to the website for the National Association for the Deaf (NAD). I would then say you can call me back, or I will call you back when you have had time to research your responsibilities under the law. I can’t remember a single one calling me back first. I would call them and ask again. This would usually go on for weeks before they would finally say, “We won’t provide an interpreter for you.” My initial contacts with NAD a year and a half ago resulted in nothing. They wouldn’t return my emails even though I knew the email address was correct. A few months ago, I tried again. I was pleased when someone did respond and was very helpful. They made phone calls to all the doctors’ office in question and were amazed how adamant most were in not caring if they were in violation of law. NAD sent letters from their attorney informing them of their responsibilities. One doctor’s office relented and now provides me an interpreter. The others still refused to do so. NAD felt the situation was bigger than they could handle and put me in touch with a group of attorneys at an advocacy center that is now in helping me with my problems. NAD continues to follow the situation. My current attorney has repeated the initial steps of phone calls and letters to try and solve the situation with the least amount of litigation as possible. The doctors’ offices in question have still refused to provide an interpreter for my appointments. The center is still acting on my behalf. I am still working to better educate the medical agencies in my area on the needs of deaf and deafblind patients regarding communication issues and their rights to be informed and make decisions. The fight goes on as my medical issues continue to deteriorate.

You might now ask if I contacted local and/or state agencies and private organizations for the deaf on this issue. I contacted them before I contacted NAD the first time. Most of my attempts to call were not returned. At one agency, I was told that in this area the deaf usually choose to use family members and friends who could sign or otherwise help them to communicate. The doctors’ offices in the area have come to expect this. This organization and others who mentioned similar reasoning felt that it was their responsibility to support what the Deaf community desired. I think back to when I could still see, and I went to the doctors without help. It wasn’t always easy because I had to keep asking the staff to look at me or repeat, but I didn’t know ASL. I had heard of ADA, but only knew about wheelchair ramps, braille signs, and hearing aid compatible phones. That was because I saw them around me in the environment and knew it was because of the ADA law. No one ever offered to explain that it meant more than that including the deaf services area of Vocational Rehabilitation Services that helped me get into college or later go to Helen Keller. Would I have requested accommodations if I had been informed? I don’t know, but it would have been nice to have had the choice to consider.

A final aspect to this situation that I would like to pose is the argument that the Deaf and some DeafBlind would rather use family members and friends. Of course, that is their choice, and I would not want to force anyone to do anything that would make one feel uncomfortable. Again, though, I would want to make sure that choice is an informed one. It has been shown that untrained family members or friends often do not understand the medical terminology and processes well enough to accurately translate to ASL or convey it most any other way. They often are too close to the patient and wish to shield them from pain and fear if the news is negative. Others may see the patient as more of a child and try to make the decisions for the patient. Or, often it is simply a matter of feeling overwhelmed with the information being given and trying to convey it to the patient that friend or family member resorts to, “I will tell you everything later”. If the patient is fully aware of these issues and is ok with that then fine, but education should be in place to make them aware of the possibilities and help the family members and friends be aware, too. Most of this would not be a conscious attempt to deceive just blinded my love and concern. In addition, the other side to this coin is the doctors’ offices are at risk as well. There have been cases of a patient making appointments and not requesting accommodations for communications such as for an interpreter and then suing the doctor’s office for not providing one. The patients win the case because the ADA law is clear. Having a policy of asking a deaf or deafblind patient if there are any communications issues and any modifications that they need and providing them upon that request could help protect them from such possible litigation. I have heard and read many opinions on all sides of this issue regarding providing interpreters in medical settings. The ADA law exists to protect deaf rights, and it was written to prevent overdue hardship on medical providers. Everyone needs to educate themselves and others. Litigation should not be needed for deaf and deafblind to receive proper medical care and understand that care given. The patient should not also have to fear that the medical provider might retaliate in poor care once forced to provide the accommodations for communication.

Advocacy is the key here with education and awareness being the preferred method. The law is there for us to use if needed. No one should have to have their medical issues ignored or medical decisions forced on them. We all need to work together on this and other issues that face us. Since there have been others asking about similar issues, I wanted to share my experiences in hopes of helping others.

If you have questions or comments, you may email me at rkwalker@wynfieldca.org or write me in braille at 143 Williamson Dr., Macon, GA 31210.

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