DeafBlind Hope’s Journey has Moved!

 

You can find all of my articles including those on the now-closed Homeschool Mosaics site at Tactile View.org . The adventures of my life in the Dark Silence continues there with a few surprises, too. Follow along! I would love to see there.

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The Wedding Day!

My purpose in posting this on Homeschool Mosaics was not to just brag about my younger son’s wedding day (which you know we, parents like to do) because if you aren’t involved in the wedding it can be boring hearing about it in great detail, but I wanted to give people a glimpse into my way of experiencing a memorable event, the hard work that tactile ASL interpreters have to do, and the importance of SSPs, interpreters, and people willing to understand the needs of the DeafBlind. I am sharing it now with you, my friends, in the hopes that you will enjoy it, too. Everybody told me they cried, which wasn’t my intent LOL, but I will give you fair warning that some say you might need tissues handy.http://homeschoolmosaics.com/the-wedding/

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Interpreters: A Special Kind of Hero

Today, I write about ASL interpreters, the heroes to me and many other Deaf and DeafBlind individuals. They train to provide the best interpretation of information in the form of words to the beautiful images found only on the hands and in the minds of those who understand the language of the hands. There are many kinds of heroes in this world. I share how ASL interpreters are true heroes to me. I hope you will read today’s post on Homeschool Mosaics and understand just how special these hard-working people are and how they contribute so much to many. http://homeschoolmosaics.com/interpreters-a-special-kind-of-hero/

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Remember the Special Needs Members in Your Family This Holiday

There are a lot of awesome things on Homeschool Mosaics this month about the holidays in regards to giving, remembering the importance of family, and including the Special Needs members. My column is all about how to include them in the upcoming festivities including the DeafBlind, so please check it out and think about those you may need to think about and how you need to do that to have the best holiday season for everyone!

http://homeschoolmosaics.com/include-your-special-needs-family-friends-in-your-holiday-gatherings/

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Good Cheer Winter 2011: Prejudices

Touch Points
By Renée K. Walker
It is a new year as I write this column. I am thankful for so many blessings in my life and the ability to find ways to still be productive despite being deaf and blind. I think we all want that for ourselves. The New Year coming also gives us time for reflecting on what we want to change about ourselves and our lives. Often, we keep our reflections to beneficial but more surface aspects such as losing a few pounds or starting a new hobby or learning to lead a less busy life. After a hectic year of fighting some of the usual DeafBlind issues such as needing interpreters for doctor visits and being included in social and family events, I couldn’t help but remember the many comments made to me from readers of this column and comments from others in other DeafBlind venues on forums or Facebook. The common thread I heard was about negative attitudes among not just the hearing/sighted members but also those of other disabled people even DeafBlind people. That saddens me. I, too, have felt the negative attitudes and had hoped my experiences were isolated. For these reasons, my reflections this year turned more outward than inward with the desire of change being for all of us.
The comments seem to relate similar incidents as my own, so I will mention just a few here. I am sure you can relate to a few and add your own. I have encountered the usual hearing/sighted issues that you have read about even here before, but the ones that distress me the most come from other disabled especially other DeafBlind. Many Deaf will not socialize with me except through an interpreter. They actually fear the touch of tactile ASL. A few have even expressed their displeasure that ASL is even used by the DeafBlind at all since these few think it should only be a visual language. Then there are the blind and other disabled who also have disabled parking permits as I do complain that I don’t look handicapped, so I should walk like everyone else. I have my reasons and have had a permit longer than I have been both deaf and blind. It had nothing to do with vision or hearing issues. I do still prefer to use it even for those reasons because of my safety and the safety of my guide dog as I try to harness him and often have almost been hit just trying to get us both out of the vehicle. There are also the few totally blind who feel that those who have some vision shouldn’t be considered part of their group because the ones with some vision still don’t know what it is like to have no sight. Then there are the few Deaf and some DeafBlind who are culturally Deaf and feel that only native ASL signers can be culturally Deaf. I have been deaf since a young child, but I learned to speak and the oral method was the only method available to me because there was no Deaf community near me in the places that we lived as I grew up. You can’t learn what isn’t there, but that doesn’t make my experiences as a deaf child that much different from others except possibly more difficult, since I didn’t have a visual language to build on or a family or community in which I could full participate. Now that I know ASL and wish to practice it more to fluency, I find it disheartening when a DeafBlind person literally pushes my hands away because they realize I am not a native speaker, and they decide they do not wish to have further contact with me. The DeafBlind community is already very small and widely dispersed. When we often don’t fit in with the Deaf community, you would think that we would be happy to share with any other DeafBlind person, since many of us claim that isolation and loneliness are friends we have that we prefer not to have.
My experiences are similar to many others. These experiences are like walls being placed around me keeping me contained in room that seems to grow smaller. Truthfully, I have referred to these experiences as being with negative attitudes, but they are actually nothing more than outright prejudices. A person can be more than just racially prejudiced. Prejudice doesn’t have limitations. Anyone can be prejudiced, and they can be prejudiced about many different things and people. These prejudices against people who don’t sign or didn’t sign until later, who are not totally blind, who don’t look disabled, or others are dividing a small group into even smaller groups and causing even more pain than the society as a whole that tends to ignore us at best. It is often easier to cope with pain from outsiders than from those who are the same or similar. You would also expect that people who have been hurt by others because they are different would have more compassion for others who are different. Sadly, that isn’t always the case. Humans are capable of much pain to each other, and sometimes those who have been hurt can inflict even more on the ones around them.
In addition to the pain caused and the barriers of further isolation that are created, the disabled group that could stand together as one and have a louder and stronger voice is weakened to the point of being inaudible and useless. The good we could achieve for everyone as a whole is diminished to nothing. The one group is broken into so many small slivers that there are too few fighting for a specific issue. As one, we could fight with a strong, loud voice for many issues that would benefit us all. But, no, we can’t do that because we are too full of anger at another who is slightly different to recognize that the other is actually more like us that we could be the same.
Damage caused to our voice by these prejudices is great, and the good we could achieve will continue to be weak and slow. The pain that we cause each other will continue to isolate us more and more until we each stand alone. Does that sound like a future that anyone of us would want? Do we even really want to wish that on someone else just because they are a little different from us?
Reflect on your own attitudes as this year begins to move into Spring, the season of newness. You may not be one of the few are among the ones mentioned here. It is good that I can say it is the “few,” but unfortunately, the few can cause much dissension and create enough chaos amongst the many that little can be achieved. If the few can see that their attitudes are no different and no less harmful than the prejudices of racism to our society and work toward new and positive attitudes toward others, change for good can happen. If the many can be willing to lovingly stand against the prejudices of the few to show that there is a better way, the disabled can come together and work for a brighter future filled with the ability to be independent and productive. I am only one person, but it can start with one. Who will join me?
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.

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HKNC Training: Snow, Snow, and More Snow!

Well, the weather has been frightful, but I have seen more snow than I have ever seen before. Joey has never seen snow before. We had a ball playing in it. Joey running and sliding and I throwing snow over him. He likes to try and catch it.

"Joey in the snow making shadows."

"Snow in the HKNC yard"

Training has been more practice of all that I have learned so far. I talk in sign everywhere pretty much. Tactual is still my best mode. In most classes, we are doing the final goals and filling out requistions for my state to authorize payment. I don’t know if my state will pay for everything I need or not, but I hope and pray they do.

Jesus has been at work this week through me. I just hope I rose to the occasion as He wanted me to do. One of my instructors actually came to me after hours and asked me to tell her about Jesus. I was ecstatic. How lovely it was to share my love and experiences with her. In case you are wondering, this is not the same person that I have spoken of before. That person is saved and I can tell the person has faith. Jesus has something for that person to do and needs to prepare. The instructor that came to me this week is not from a religious family. She doesn’t know Christ and isn’t even sure there is a God. I hope that I answered her questions, but I hope even more that Jesus was able to work through my answers. I am praying mightily for her to feel Jesus. I can tell that the Holy Spirit is calling her. I just pray that she will accept that call.

We also had a holiday party that was actually a Deaf party. It was fun, but loud. I turned everything off and I left Joey at the center with my friend, Ginger. Basically, they have these very large speakers and some are turned down on the floor so that you feel the vibrations through the floor, tables, everything. I could feel the vibrations all through my body. The Deaf use the vibrations to dance by. It was very interesting.

"A friend, Peter, in his Christmas tux and his SSP, Carol."

Saturday, we had another party at a Sportsman’s Lodge near the Long Island Marina. We at HKNC were invited, but it was mostly for the many special needs children from the area. I loved watching the children and adults of various ages with various forms of mental retardation playing and laughing. They all loved Santa and were so appreciative of the hand-knitted afghans we all got. I was too. Mine was a gorgeous lavender, purple, and pink coloration. I really couldn’t see the colors, but the staff described it to me very well. I like those colors. Many of the children wanted to pet Joey. Some were afraid of him, but as usual Joey was perfect with each and every one. He always seems to know how to act. With those who were afraid, he laid down next to them and let them reach to him. With others, he reached up and gave a big “Joey kiss” which is very special, you know. The children’s faces shined as Joey poured out his love for all of them. The others danced for a while. I enjoyed seeing everyone loving moving their bodies to the music in any way they could. I, of course, can always measure my fun level on a scale of 1 to full blown asthma attack. The party made it to full blown asthma attack. Lovely… Actually, what happened was I didn’t know that the lodge allows smoking in the building where they have a bar in the back. There was no smoking at the time, but I can’t be around it at all, so after a couple of hours I couldn’t breathe. We did a nebulizer treatment in the van on the way back to the center. I did a couple upon my return. I eventually got better without going to the hospital. I was very thankful. I have had enough of hospitals for a long while.

Here is the HKNC Christmas tree in the lobby. Next to it is the large paining done by a former totally deaf and blind student. The picture depicts the scene where Helen Keller and Anne Sullivan are at the well with water running over Helen’s hand as “Teacher” as Helen called Anne, fingerspelled “W-A-T-E-R” into Helen’s other hand. Helen’s says this is the moment that her world became alive with the true understanding of language.

"HKNC's Christmas tree in the Lobby along with the painting by a DeafBlind student of Helen at the well.

"This is a close-up view of that painting of Helen Keller at the well learning "W-A-T-E-R".

It began to snow late Saturday night and continued all day Sunday. I got to go to church with my friend and HKNC interpreter, Jessica. Jessica is 24 years old, but very spiritually wise. Her parents and Jesus have done a wonderful job with her. Jessica is Pentecostal, so her church service was a little bit louder than the ones at my Baptist Church. I loved it though. I couldn’t hear the music, so it was hard for me to worship like I normally do. Jessica though tactually signed everything for almost 3 hours so that I could experience things. That may not sound like a big deal to you guys, but interpreting is very tiring mentally and physically. Tactual sign is even more demanding. The interpreters have very strict regulations for when they are working. At HKNC, they do interpreter switches about every 30 mins or so, because it is so demanding of them. Jessica interpreted for me almost continually for about 3 hours. I asked her about half way through if she wanted a break, but she said she was fine. Jessica never complained. That was very special to me.

Well, the good news is that I am beginning my last week here. I don’t know when my flight is yet, but I hope it is Friday, 21st or Saturday morning at the latest. I will update here as soon as I know. That will probably be my last blog, too, since I will have to pack and ship everything before I leave out. The experience has been wonderful, and I have learned so very much. I have friends that I can call lifelong friends, as well. However, I am ready to get home. I have family, friends, and students to get home to. Things will be different, though. Signing has become my main mode of communication, so I hope a few of my close friends are willing to learn some. I am going to need an SSP or Support Services Provider, too. Hopefully, we can find someone to fill that role. Anyway, more on that after Christmas. I just want to get home now. Little Joey wants to play with his sister and brothers and give Daddy a big wet kiss. I do, too.

Take care, everyone!

Renee’ and Little Joey

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HKNC Training: Been in the Hospital

I have been unable to post for a while now. I became sicker and sicker with my asthma. I had a migraine for the week after Thanksgiving working on a speech I had been asked to do as keynote speaker for a technology seminar. I never got to give it, unfortunately. Saturday afternoon, I was found on my bed semi-conscious. I had evidently gotten up and tried to ask for help earlier, but I don’t remember it. Little Joe kept trying to push me up and licking my face. His urgency is what got me moving at all I am sure. I spent Saturday thru Wednesday in the hospital with pneumonia and exacerbation of asthma. I had IV antibiotics and IV steroids. I was back at HKNC for 5 hours when they had to return me to the hospital. I came back the next day. I am still confined to my bed and unable to speak because I don’t have enough air, but it is getting better slowly. I am still on steroids. I will say that my signing is getting much better because I have no choice, but to sign everything. I also was unable to hear anything since being profoundly deaf, I have to concentrate to understand. I was totally unable to do that. The hospital had to bring in a tactual sign language interpreter for me. I was able to do it fortunately. God does provide in all things. Pray for me as my chest still hurts and I am still wheezing.

Thank you Jesus for Little Joey.

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HKNC Training: It’s Been Awhile Since I Posted!

We are still looking back on my HKNC Training time.

Well, I know some of you are keeping up with my blog because I have gotten several e-mails checking on me, since I didn’t post last week. Well, I didn’t blog because I was in the hospital for a little while and then ordered to stay in bed for several days.

It was on Thursday afternoon when I returned to the residence hall for lunch. I looked on the way back to see if there were any smokers at the bench. That is very hard because I only see shadows with a little bit of color in the very center. Distance is not very far at about 20 feet on a good day with extreme blurriness. I did see one smoker on my way to the dog park as they call it here. I went “cross country” to take Joey to busy in the designated area. On the way back up to the residence hall door I looked, but I didn’t see any shadows that looked like possible people around the smokers’ bench. As I approached the door, I suddenly had a complete shut down. I couldn’t talk much less breathe. I turned around to see what might be causing it and finally saw a smoker about 5 feet from me. I saw a dark shape hanging out of where his face should be. I grabbed my inhaler as I went into the building. I couldn’t suck in the med. I managed to get my door open and pulled out my nebulizer, but I was struggling hard for air by this time and feeling a bit weak and lightheaded. I was afraid I was going to pass out. I went out in the hallway holding my nebulizer. I thought I would head down the hall to the nurse to get help, but I ran into the smoker right outside my door. He is totally blind and frequently gets disoriented since he refuses to use the mobility skills that he is being taught. He is a bit young and hardheaded like most kids his age. Anyway, I can’t even be around a smoker because of the smell off of their clothes, especially just after they have smoked. I turned around thinking to head into my room, but got scared as I almost fell. I went across the hallway to PATH which is where the mentally disabled deafblind live and work. They have to have staff with them one on one at all times. I knew there would be staff there. I couldn’t talk and most of the PATH staff is totally deaf anyway, so I signed nurse. Fortunately, that was easy enough, and they immediately ran past me to get the nurse. I went to my room to try again to get my nebulizer set up. I couldn’t see much of anything by this point. I kept trying to find the plug-in, but couldn’t. A few seconds later, the nurse arrived and took the nebulizer from me and got it set up and plugged in for me. I worked hard trying to get the med in my lungs.

After a while, I thought I was better. The nurse was going to help me over to the training building to sit with her for a while. We couldn’t leave yet because there were smokers in the front of the building, I sat in the lobby waiting. For whatever reason, I starting shutting down again. The nurse said she was going to get me to the hospital. She called my case manager to come take me there. I did another treatment, but it was not working. The staff made the decision to call an ambulance. I will shorten the story here, so I won’t bore you too much. I received a breathing treatment in the ambulance, five at the hospital, and two epi shots. Since I had had my normal breathing treatments before the attacks, I received a total of ten doses of meds. The ones at the hospital were more than my usual Xopenex, though. They had a steroid in them, as well. I was finally released late that night after a chest x-ray showed my lungs were clear. I was kept indoors all weekend long and missed classes Friday. Staff was told to take Joey out for me each time and my meals were brought to my room. They were instructed to check on me every hour 24/7. I got caught once trying to e-mail my staff to let them know that I was out of action for a few days. They “threatened” to tie me to the bed. OOPS!

I continued my breathing treatments every two hours around the clock until Sunday night. By Sunday night, I was feeling much better. Until the rain came in… About Ten o’clock p.m. My chest began to sting and then tighten up again. I felt bad all Monday, but I went to classes and did my best. I went to the nurse to nebulize every couple of hours or so. I got better as the front moved through. The rest of the week went fine health-wise until yesterday as another front moved in. I am nebulizing again every two hours, taking my Advair, etc. The chest hurts continually now as well as the sharp pain I get when breathing in. I wheeze when I exhale. I can’t hear it, but I can feel it. The nurse says I sound terrible. My face is pale, and I haven’t been able to put on enough makeup to cover the the black circles growing larger and deeper in color under my eyes. My doctor at home knows that I have been to the best Allergist and Pulmonologist in the state of Ga. They have told me that they have done everything that they can to help me. My primary doctor wants me to go to a Pulmonologist and and Endocrinologist (for my diabetes) here in New York to see if they know something my doctors at home don’t know. It is worth a shot. I sure don’t like living like this. Please pray for me. I don’t want to go home before my training is finished, even though going home sounds really good.

Thanks to a couple of very sweet and possibly, brave employees here, the smokers’ bench was moved away from the building and my pathway right after I was taken to the hospital. Val, my CLC teacher and good friend, and Mia, my case social worker who is fast becoming a friend by listening to me, went in to the head person demanding to know why I had to go to the hospital when the simple answer would have been to move the bench. I was told by someone else that Val was not nice or quiet about it. I appreciate it very much. It was nice to know that someone understood and cared. People just don’t seem to understand how serious asthma can be. It is very scary not to be able to breathe. Even today with all of our medicines, asthma kills many people every year. My case manager, Molly, and Vocational instructor, Elissa, stayed at the hospital with me. Molly rode with me and Little Joe in the ambulance and stayed until I was stable. Elissa came in and kept me company telling me all about her Jewish religion which totally fascinates me. Elissa is a practicing Jew. I admire her for keeping true to her beliefs when many Jews and Christians have made it just a part of their past or something they do on their Sabbaths. It hasn’t been easy for her either. Many people have treated her rather badly because of her faith. Anyway, I enjoyed her company.

Some of you may want to know where Joey was during this time. Joey stayed by my side the entire time. The EMT’s didn’t want to take him with us. They thought dogs weren’t allowed and tried to convince me that he would be scared by the sirens. Well, I know my rights. Southeastern Guide Dogs covered it well. Guide Dogs are allowed by law to ride in the ambulance with me and in the hospital. The hospital staff was fine with it and the dispatch assured the EMT’s that it was ok. Joey was perfect. He stayed right next to me with his head on my lap and let me scratch his ear. He didn’t move as the EMT had to get around him or when the siren blasted. In the hospital, he stayed near me except when they were working on me and then he watched intently from the side . When they were finished for a bit, he came back up to me so I could scratch his ear again. He is as much a therapy dog as he is a guide dog. The hospital staff from all over came down to see the wonderful dog in the ER. As usual, Joey was more popular than me.

Well, let me tell you about my training when I was in class. In mobility, I played around with a braille compass to help me find directions.

"Braille Compass"

Natasha also showed me a tactual map used by the blind to navigate the NYC subway system.

"NYC Subway System's braille Map"

"Braille Subway Map with subway line symbols for stops"

Then I went around the building blindfolded without Joey just using my cane. There are sections of the training building that I haven’t been to yet, so that area was a bit confusing. I have an overview map of the building in my head that I use when I navigate the building. I can even figure out the general layout of certain parts I haven’t been to just by using the information that I do know about. I know that the training building is like a giant box with one main hallway that traverses the outside wall. One section of that hallway is where administrative offices are that I never go to. However, I can visualize its pathway by knowing that it connects with the other hallways on either side. There is also a section of the building that was added on to the corner of the backside of the building. I have been to that section on the downstairs part. Therefore, I know the basic outline of the section upstairs. I did pretty well navigating the building being blindfolded going slow enough to not hurt anyone if I ran into them. I can’t hear much regardless of wearing the hearing aids and FM. With residual vision, I can guess a lot of stuff. However, take that vision away and I might as well be totally deaf. Going slow keeps me from jamming a cane into someone’s leg or knocking them over. At one point, I became confused because of an alcove. I thought I knew which way to go, but I wasn’t confident enough to trust my information. I used my braille skills to read a few door plates and figured out that I had turned down Case Manager row which was exactly where I wanted to go. Case Manager Row is what I call the long hallway where all of the case manager’s offices are located. The first door I read didn’t make any sense to me. I was reading Debbie Hdj something or other. It didn’t make any sense to me, so I thought I wasn’t recognizing the braille. The next door said Pete somebody and I knew he was a case manager. Natasha clarified that I was reading the first name right, but she is an immigrant from another country, so her name didn’t have any vowels in it until after several consonants. I was reading it right just didn’t think so.

Natasha also showed me a different method than the one I know to go up and down steps. I wasn’t too confident with it, so I will explain it after we have practiced it again.

On Wednesday the 31st, we had a haunted house put on by staff and students. I don’t really celebrate Halloween, but I did go through it. This one was different. It was designed to be tactual for the deafblind students. They used silly string to help students feel the “cobwebs”, supposed food was all gooey and sticky. They used a cauliflower head to represent brains, modified olives to represent eyes, etc. They had balloons everywhere so the students would feel things as they walked through and lots of bubble machines to enhance the cold, moist feeling. Each student had a guide to help them through and interpreted everything to them in whatever mode they needed such as voice over into a FM system, tactual sign, braille communicator, etc. The entire script spoken by the tour guides (spooky sisters of the house) was signed and written in braille to be read. The name of the fictitious family was the Braillers after the name of the typewriter used to type braille. Several members of the supposed family were deafblind and had a curse put on them which had given them creepy special powers that they used to get revenge on others.

You get the picture. I know many of you do not believe in celebrating Halloween, but I wanted you to see how the staff brought the holiday to the deafblind. They worked hard on making this a fun event for all the students regardless of their disability. There aren’t many in the real world who would go to that much trouble. It was fun.

In Technology, I am beginning to focus more and more on the braille display as Bill taught me how to use the internet and a program called NexTalk that will allow me to use the TTY for phone calls. Telephone use is one of my biggest hurdles with the school. As many of you know, I do not do well at all. My staff are picking up a lot of my phone calls for me and will continue to do so, but there are times when I will need to use something. We are just going to have to keep working on that area.

I am learning my sign language in CLC. We practiced hand shapes and continued tactual practice. All of my communication is now in tactual sign language. My headaches are beginning to disappear as I get better at understanding. That is a very good thing. I would love to stop using my migraine medicine. In time, I hope I can. Migraines are not something that I am prone to have. My doctors say they come simply from trying too hard to see and hear.

Val took me to a grocery store here, too. We practiced using communication cards and the screen braille communicator to purchase what I need. I found that I need a couple of more communication cards in my book to cover some common questions. The SBC is going to work really well, especially as I get faster with my braille reading. Donna works with me to help me learn my sign vocabulary. Here is a pic of her in the classroom:

"Donna, again, but she really did teach me an awful lot."

I have a few more pics for you, too. My staff wanted to see pics of Ginger, my Vocational Evaluator.

 Joey loves Ginger. He tries to help her, too. He always wants to walk where he is between the two of us. Ginger has Multiple Sclerosis. She doesn’t let it stop her though. She whizzes around that building way too fast for anyone to keep up with.

"Ginger and Joey"

It was a bit sad this week, too. My friend, Jane from S.C. went home for the weekend. She had asked me to pray for her because she was afraid if she went home that her family who has refused to support her stay at Helen Keller and wanted her home that they wouldn’t let her return. Well, that is exactly what happened. We do not know if she will ever return. I do know that she desperately wanted to get more training, so please pray that God will open the hearts and minds of her family.

"Shelby and I saying goodbye."

Also, my friend, Shelby from Atlanta, went home yesterday. She wanted to stay as well, but Ga’s Vocational Rehab didn’t want to continue paying for training. Shelby is 27 years old and almost totally deaf and blind. She is intelligent, but was poorly educated. She is quite capable of learning, but needs to catch up. The state didn’t want to pay anymore right now. Shelby had been here since May.

"Joey waiting for me to leave a class."

This is Joey waiting on me to get ready to go to another class. Isn’t he cute?

Well, I have just about covered things for now. Keep praying for us. We are still praying for you, as well. I have a meeting with everyone on my team and Scott, my husband, by phone on the 16th. Hopefully, I will be able to let you know when I will be coming home and a report of my progress. Until later, keep praying

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HKNC Training: What a Week!

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"

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."

 
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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Boredom beginning to set in Some

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."

 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."

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 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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