Time Sure Flies!!

Sorry I've been gone so long! I didn't think it has been almost two months??? Whoa.

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Update:

I cannot believe it’s been over a month since I last made a blog post. I guess it happens.

Angel just celebrated her 9th birthday. She got an alarm clock that she’s always wanted (as an added bonus for this mom, it’s child-friendly to boot). She also got a summery dress, too. She’s just growing too fast. Sigh. Where did my baby go??

On the CI (cochlear implant) front, I had my 6-month mapping and in some areas I am stable and in others there is a marked improvement. I don’t see too much difference myself hearing-wise since the 3-month mapping, though.

I had a CI moment!!! A couple of weeks ago, I took the dogs outside on a bright, sunny morning. I heard birds, most likely robins, chirping their morning songs (or should I say,…dramatic pause…their morning gossip??) I’ve heard the birds chirp before with my hearing aids (HAs), but they all sounded the same to me, except for maybe the doves. If I wanted to, I’m sure I could distinguish each bird’s sound if I learned which one belonged to which bird. I never realized that the blue jays had such a low chirping sound. I’m sure I’ll be able to learn to recognize that. :Cool, huh??

I still have “deaf moments”. After all, the CI doesn’t make me a hearing person. I’m still deaf and coupled with the RP, I don’t have the sharp visual cues most d/Deaf people use and in a way, it makes me “deafer”. I don’t know how I can explain that. If I had normal vision, I’d catch more hand movements by someone trying to get my attention or something like that. Without being able to see that hand waving at me, I’m not “hearing” it. Does that make sense?

I also have more words to list that I mispronounce:

Decadent (I keep saying “de-CAY-dent” because I think of the word “decay” as in bad or bad for me-like a decadent cheesecake. It’s yummy, but bad for my waistline. LOL).

Chihuahua- “she-wah-wah”??

Sliver-somehow I end up saying “slither”. Ugh.

Years ago, I could not even pronounce the word “beat”. I kept saying “bth” as in, “I bth you.” I don’t know why. It’s how I picked it up.

Having two dogs in the house is a lot of work. Right now, Onyx is a shedding machine with the on-again-off again spring weather we are ‘enjoying” here. I’m sweeping the floors every other day and get a lot of black Onyx hair. And having Topaz (a.k.a. Dust Storm) tear through the house and make the dog hair/dust fly!! I admit I have “why do we have two dogs??” moments. We just got through a puppy stage with Onyx and now we have another puppy. It’s almost like having a toddler and baby in the house, only they are potty-trained. Am I crazy?? (Wait, don’t answer that.) But Hubby is happy to have his hunting dog (Topaz) and I cannot complain about something that’s important to him. I tell him why do we have dogs? Because they are entertaining (and, should I add, stress relievers who give unconditional love??)

I cannot believe it’s April already. We are moving into the year 2009 pretty quickly, aren’t we?? I was just telling the girls that in another two months, school’s out for the summer. (If I keep going at this rate, I’m going to be old….acck. LOL.) We had a few days of nice weather in the 60s followed by a drop to the 40s. Now there’s just snowed last week after a good warm spell and now we are back to comfortable temperatures again. Welcome to Wisconsin and its fickle, typical weather.

I am also participating in the first-ever Wisconsin VisionWalk in Milwaukee. How exciting to try to be a part of this fundraiser for Foundation Fighting Blindness!! We are so close to a breakthrough to finding a cure for degenerative diseases such as retinitis pigmentosa (RP), Usher Syndrome, and Macular Degeneration. I just have to believe that!! I’d be happy, too, if they-researchers, scientists, and doctors- could find something to just halt the progression of RP if they can’t reverse it.

If any of you want more information on that, please email me with the link to my email I have provided on the sidebar.

I know I am not blogging as regularly as I used to, but I’ll try to just post a line here and there.

Things Must Happen for a Reason

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The other day, I went to Flare’s Christmas concert at her school. Since Angel, my youngest, was sick, she stayed home with Hubby. It was strange for me to be going there by myself, without one or both of the girls with me. They are almost always with me wherever I go.

Unfortunately, the gymnasium was dark. I could barely see the chairs lined up from the lights reflecting off a HUGE Christmas tree. I thought I chose the second row. (That’s my cue to know when to stand and when to sit by observing people in front of me.) And I also thought I was close to the middle, but I wasn’t. I was on the third row, a little off from the middle. I was given a program to follow along with the concert. Again, unfortunately, it was TOO dark to read the program!! I found myself envious of the others who could read in the dim light. The students in the concert often moved around, to stand together and sing and then return to their seats…in the faint light. No one tripped or stumbled.

I felt a little better when Flare said she couldn’t read her program, either, because of the dim lighting. I knew it wasn’t just me.

CI Moment...sort of...

But before the concert started, I had a sort of a CI moment. I was overhearing snippets of a conversation taking place behind me. I heard, “…just got in last night….they are staying here….leaving on the fourth….” Which to me meant that some relative of theirs came in last night and will be staying till January 4. I felt a little guilty about it, but it wasn’t like it was supposed to be a big secret or anything and I didn't turn around to see who was talking. I just felt like I was eavesdropping (without even trying). There wasn't a lot of noise or anything, so their voices were very clear to me.

After the concert, I waited until most of the people around me exited from their seats. I walked slowly down the dark path towards the light at the end of the “tunnel” (a pathway along the edge of the gym) near the back entrance of the school. Flare needed to pick up some textbooks and told me to stay right where I was. No parents allowed by the lockers. (Her words, I’m sure. LOL.)

Then we needed to cut across the school auditorium to get to the front entrance. I stopped right before entering the auditorium to stuff the program into my purse and take out my hat and gloves. I dropped a glove and bent to pick it up. A man on the side of me watched me. I think he said something, but I just smiled and said, “I got it.” Then I put the gloves on. A child walked around me. I smiled in that “oh, what a cute kid” smile as she gazed up at me. Then Flare came up to me, realizing I wasn’t behind her anymore. “Mom, you were standing in her way. She was in a wheelchair.”

RP Moment

Wheelchair? I did not see a wheelchair. “Someone was in a wheelchair? I only saw a child walking around me." She informs me, "That was _____ in a wheelchair."

I instantly replayed what happened. Me, stuffing the program in my purse, getting out my hat and gloves, dropping my glove, putting them on…the man looking at me and the child walking around me….I was mortified. How rude did they think I was??? Did they wonder why I didn’t courteously move to let her pass? It was DARK and all I could see was a sea of faces reflected in very dim lighting offered by the EXIT sign above the doorway. That child was not a child, but a studentin a wheelchair. Keep in mind that I had no idea anyone was in front of me. That area in front of me was too dark for me. It was the doorway to the auditorium.

Then I thought some more. Had I not stopped to do the purse thing, would I have continued to walk and walk right into the girl in the wheelchair?? How would that look? Which was worse? Was this one of God’s mysterious ways of protecting us? I always think about how well-timed things seem to be, like walking round the neighborhood. Sometimes I don’t hear a car back out of the driveway. Had I have been in the path of the driveway a few seconds ahead of time, I might have been run over. I like to think of it as one of God’s many ways of sending our guardian angels to protect us, even to put a seed of thought into our minds to pause and do something.

Then Flare and I walked through snow-covered sidewalks to the bus stop. There was a special enclosed area with a bench inside for people waiting for the bus. We waited in the cold, snowy weather, a little buffered from the winter wind, but some of the frigid air stretched out and icy fingers brushed by us and blew inside the enclosed area.

I had studied the public bus route online. It was supposed to drive by every half hour. Within five minutes, the bus came and went. What? Didn't the bus driver see us inside that little enclosed bus stop area? Were we supposed to step out and stand at the curb? It didn't even stop or slow down.

I figured we'd wait another half hour and when the bus made its rounds again, we'd get out and stand by the curb.

Nope. Nothing. An hour came and went and no bus. We ended up walking, toes and fingers numbed to the bones, into the (OH-SO-WARM!!) hospital lobby and asking for a phone to call a taxi. The receptionist there immediately made a call for us after inquiring which taxi service we wanted. She must make a lot of taxi requests for other patients/visitors.

So much for that bus experience!! It was too cold now for Flare to walk the two mile trek home from school and I wanted her to try the city bus. I figured she’d be home around the same time anyway. She’s stubborn about taking the bus (just like I am, too, but I figured we’d both cure ourselves of that. Sigh. It didn’t turn out that way). It’ll be a while before spring comes and she can start biking to school again. Sigh. I am upset about how things worked out. I don’t know if the bus service just shut down at that time or what. We had been under a four-day attack by Jack Frost (with about 2-3 inches of snow the past four days at that time-each).

It must have taken me about a good hour to calm down after getting home that day. I was so frustrated about the bus situation. I really had to stop and think again. This is the way life is and it is up to me to work with the cards I’ve been dealt. I can’ go around complaining all the time or just shrug it off. That's life.

So I am just going to file it away in the filing cabinet in my memory bank, label it “An RP Day” and take out the folder to review, to objectively and retrospectively tell myself that I couldn’t change anything, but most of all, that I am NOT alone. It happens.

Long Time No See

Hello, everyone. It’s been a while so I thought I’d post something so you know I’m still around. :) I hope everyone (in the US) had a great Thanksgiving.

Last week I had my 3-month mapping (the personalized adjustments made to the CI-cochlear implant-that helps me to hear in all kinds of situations).

The first thing the audi (audiologist) did was put me in jail, that is, the sound booth. I am familiar with the layout of the room now after three visits. It is dark in there and for us Usher folk, it takes time to adjust to the darkness. I have to take a step into the room and walk over to the chair. The first time I went in there, I found the arm of the chair but almost found myslf on the floor because I thought the chair was turned to me when it was turned at a 90 degree angle, not 45 degreej angle. Once I sat down, I faced a huge speaker and to the right of me, is a window to another darkened room where the audi does the testing. I can see her outline in the tinted window.

She told me to turn off my HA. So I just took it out and cradled it in my right hand.

One word tests were awful. I may say words that rhyme with them, the beginning, middle, or ending sounds of the word, like shoe for shoot or bake for make. I scored 36%, up from 26% at the 1-month testing.

Sentence test: I scored 87%, up from 79%. And with my HA and CI, I got 93%.

Then the audi made it challenging. I had to be tested with noise in the background, like voices in a crowded restaurant. I scored 40 something percent. I was also tested with sentences with me telling her what the last word of a sentence was. That can be hard because most of the sentences started with “They discussed the ….,” “They were talking about the …..,” and “She was considering the …..” Augh. Those were hard because with sentences, I could fill in the blanks with the context of the sentence. When it’s vague like that, there’s no context.

Here are the test scores of my speech perception and what some of the abbreviations mean.

HINT=hearing in noise test
CNC=consonant-vowel nucleus-consonant words (one word tests)
SPIN=speech in noise (various tests with static or people talking in background).



(You can click the grapic to bigify if you want.)

The CI gives me more hearing, environmental sounds and conversational, but I still do best one-on-one for optimal results. I am still deaf. I still struggle in crowds. I am still shy and awkward. I still worry about saying something stupid. It doesn’t change my personality (i.e. life of the party) or anythinhg. I am still me, new and improved hearing-wise, but still me.

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The other day, Flare and I talked about her choir class. She’s a soprano (she can get to the high notes without cracking her voice). She’s a really good singer. We were looking a hymnal and she was telling me about the rows of musical notes. I am musically illiterate; I cannot read music. There may be three different notes for the same syllable/word of the song. I had no idea what they meant. I was never taught about those notes to that degree. I told her about how I was placed with the altos for Christmas services in high school. The music teacher never heard my voice. He just placed me with the altos. Flare just shook her head at me because her teacher separates the altos and sopranos and whatnot for each student by their singing voice. My music teacher never heard me sing. I never did. I just lip-synced it. I had no musical talent and I grew self-conscious about it when I got a lot of stares and people turning to look at me because I sang terribly. When I attended high school, it was on a volunteer basis to be a part of the Christmas service. It meant a great deal to my mom for me to be in it and I only joined to make her happy. I was not an asset to the services at all. Today, some twenty years later, that same high school changed some things. It was now a requirement to be in the Christmas service in your freshman year. It was part of the curriculum. In other words, it was part of Flare’s grade in choir class.

Last Wednesday, Flare left to spend the Thanksgiving weekend with her dad. That night we, Angel and I, needed to get to church. The taxi came on time to pick us up. Angel was part of a choir that included 3rd-8th grade volunteers. They were sometimes accompanied by the adult choir. I was not able to hand my Zoomlink (FM system) to the pastor, which I only use on the HA until I can get the necessary parts for the CI (the receiver). Because this service was special for the holiday, it was not the same as the regular services. I got confused at times, sitting in church by myself without Flare’s help, since Angel was sitting with her group.

After the service, the pastor wanted to make sure I was doing okay. I told him I was. He said he saw me come in, but I didn’t see him. (Sometimes I get there late and he is in another room, getting his robe on before the service. He wanted to make sure I was understanding the service since I didn't give him my Zoomlink. I told him I was fine.

Then Angel and I waited. And waited. And. Waited...for the taxi to pick us up. After about 25 minutes, I called the taxi (after asking-well, really, Angel did the asking-someone where the phone was). The dispatcher on the phone said, “The taxi should be there soon. Sorry about that,” after I inquired if there was a taxi coming because it was almost a half hour late and if there was a mix-up. I realize that the taxi has a lot of other people to pick up, but still, I requested taxi services hours earlier. It should have been on record.

One of the many drawbacks to giving up driving (for my safety as well as everyone else’s) is the WAITING. I can’t get in the car and go whenever I want to. I gotta WAIT.

Some church members who saw us waiting offered us a ride home. There must have been four or five different offers. I felt so humbled. I said that a taxi was supposed to be on its way, that it was late, and I didn’t know if the taxi would charge me anyway if the driver came to pick us up and we weren't there. I was tempted, though, to take up the offer.

Finally, after being 40 minutes late, the taxi came. Angel was antsy. She wasn’t happy that I turned down the offers. She was whining about wanting to be home. That really made me frustrated even more, that I couldn't fix that.

When I got home, I felt so frustrated and shed angry tears. I let myself have a little pity party, frustrated that I had to DEPEND on others for transportation, then I had to square my shoulders and move on. Some argue that it’s not about losing “independence”, but about “inconvenience.” I can’t help but feel that it’s both of these. Getting around still a major part of life.

To snap out of it, I had to count my blessings and look at the things I DO have and be thankful for them. One of them, obviously, is the CI.

Now that I have a bionic ear, it’s given me some of my life back. I am hearing things I never knew made a sound; it brought back sounds I no longer could hear; I can hear sounds from a farther distance.

Now, how about a bionic eye? :)

Cataracts

Cataracts...


Sounds like the Broadway musical, Cats. Cats and acts. Cats are acting...(okay, that was BAAAD...moving on...)


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Seriously, though, there are three kinds of cataracts:


Nuclear cataracts-This is the kind that is most commonly found in the elderly from the aging process. It starts in the middle of the lens.


Cortical cataracts-This is the kind that is found in diabetics and radioactive exposure to ultraviolet rays. This kind starts at the edges of the lens.


Subcapsular cataracts (or posterior subcapsular cataracts)-This is found in diabetics, too. It is also found in young people and those who took steroids for a long time. These start in the back of the lens. Symptoms include glare and night driving and reading difficulties.


Some causes are age-related, secondary (from a health problem or post-op complications from other eye problems such as glaucoma, smoking, alcohol, and diet), traumatic, certain kinds of medication, congenital, and/or exposure to radiation.

Why am I talking about this? Because people with retinitis pigmentosa (RP) can develop subcapsular cataracts at any age, mostly in the 30s. Some have them in their 20s.

My brother had cataract surgery when he was about 37.

If an RPer were to develop cataracts, it develops in the back of the lens. Smack in the middle. Right where the best remaining sight is. When the peripheral vision is compromised, we still have some central vision left. When cataracts start to interfere with that remaining vision, then cataract surgery should be recommended because what remaining vision an RPer has left is precious. Some doctors want to wait till the cataracts are "ripe." As the RPer deals with the blurring vision from the cataracts, the vision is also progressively getting narrower at the same time. Some RPers have the cataracts removed so they can still enjoy the remaining vision they have. Why wait two years to remove the cataracts when the vision is that much worse, too?

It varies, though, for each doctor and the RPer's condition.

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Onyx seems to be better. She was still sick for a couple more days. I think she's better now. (Crossing fingers and toes.) She's getting thin.

When I got up this morning and stepped into the hallway, I could smell the wet smell from the basement. Kind of mildewy and moldy. Ugh. Stinks. Still needs more drying down there. We are expecting more rain. I was reading that it's worse than it was four years ago when we had some flooding and lots of rain. Our basement was the same way. Just the carpets got saturated and anything else that may be in the path of the drain or the floor itself. (Our house is over 100 years old.) I tried to breathe shallow breaths while I was loading clothes into the washer. Ugh.

Ever the negotiator, Angel has a stubborn streak that is bigger than she is. Usually, I can get her to read a book if I agree to read one side. (Of course, if her side happens to have a whole page of typed words and no picture, she'll want to trade. LOL) Sometimes she'll read a book, sometimes she won't. But, when it comes to labels, she'll read them out loud. I am not worried, she is reading at the average level for a child her age.

I hung three loads of laundry on the line. In cool 68 degree weather. With a slight breeze. They must have hung out there a good three hours and were "mostly" dried. The jeans needed more time.

Some clothes were still slightly damp when I brought them back into the house. I put them on hangers, hoping they'll finish drying up that way.

I tested a recipe that was met with mild enthusiam. It really wasn't great, but it'll do. I probably won't make it again. At least, not with all that bread that it required. It was supposed to be a ham and cheese casserole with broccoli and bread cut into tubes mixed in it. Then an egg mixture was poured over it. It's frustrating to try a recipe that didn't look as good as looked on paper. But hey, I'm trying. I am not a fan of cooking, but summer is here and I feel like I have to make everyone happy by cooking more meals. (Too bad there's no hot lunch program for the summer, huh?) Flare got all the ingredients out for me. I really should organize the lazy susan, but even if I did, someone would mess it up on me. I'll have to put that on my "to do" list. Thanks, Flare, for being a helper.

I am going to try to sit down and put together a meal plan, sort of like how the schools have a hot lunch menu for the week. Then I could just get whatever I need from that at the once every three weeks grocery store visit. (Thankfully we have a gas station nearby where we can keep a fresh supply of milk and bread when we run out.) I hope the meal plan idea takes root and it's effective. Old habits die hard, which is opening cabinets and the refrigerator and seeing what I can throw together. Or see what meat I want to thaw out for that day's supper. (See, I'm not organized.) In any case, wish me luck.

Okay. That's all.

OXOX. Later.

CapTel

I first heard of CapTel from my DVR counselor back in October 2004. It was my first real semester I went back to school and a Support Service staffer at the tech college thought it was a good idea for me to sign up for VR services.

CapTel is a captioned telephone. The caller can dial the number of the person he wants to call and hear his or her voice as well as read the caption at the same time, though it's delayed (much like on TV-the caption is behind a few seconds).



There is also other feature that people who have vision impairment along with hearing loss can use: CapTel USB. This connects to the computer and the captions are displayed in written text on the computer monitor much like ZoomText (a computer software that magnifies text and enables one to change background colors and font).

When I went through the paperwork with my vocational rehab counselor, she mentioned the CapTel. I had no idea what it was. When I went home that night, I googled it. I navigated the website and asked a question. I was sent a packet about CapTel and its features. There was an order form included. I paged through it and put it away.

A few months later, the phone rang. Hubby answered it and gave it to me. "For you." I frown at him. I don't really get a lot of callers. They'd rather talk to Hubby unless they have a lot of patience. The woman on the other end was talking about CapTel. Me, excited I actually got some words from a stranger, "CapTel?" She went on about the information that was sent to me several weeks ago.

"Oh. I don't hear that well."

Something in her voice told me that she knew I didn't hear that well. It took a few delayed "blonde" moments before it sunk in that she was a CapTel rep inquiring about my interest in CapTel and whether I was going to buy a phone.

I told her I wasn't sure what I was going to do. I wanted to look at it some more. It bothered me that there was a third party involved, transcribing the captions for the phone.

I still have that packet in my filing cabinet collecting dust.

Why? Well, as I mentioned, it bothered me that I would have a third party "listening in." Someone has to transcribe the captions, much like the TTY/TDD (teletypewriter/telephone device for the d/Deaf). I have a TTY, though I only use it to make appointments. I don't really want to use it for personal calls, unless I knew that the person I want to call has a TTY, too. For me, I reasoned, I didn't have much use for a CapTel. I really don't go around calling people and when I do, I know them (my mom, family members, and some friends who are patient). I don't always do well on the phone with male voices, even Hubby's.



Now, there's something new in the proverbal town of the HOH and the D/deaf and it's free: It's called Web CapTel. Hamilton Relay (to see if it services in your state) or Sprint WebCapTel®. The captions will display on the computer screen.

But, as we all know, technology continues to evolve. I was told that voice recognition may be the next step, making transcribers/relay operators obsolete (maybe). I was also told that the Captioned Services do not transcribe the captions, but acutally repeat what the person on the other end says into a computer with voice recognition software that is used to send captioning to the CapTel.

Digital CapTel phones are coming out next year and voice-recognition will be used, if the bugs can be ironed out by then.

This appeals to me because there would not be a third party involved. I guess that always bugged me, even when I used the relay system to make calls with my TTY. I kept it impersonal. I realize that the relay operators/transcribers have a confidentiality and privacy rule in place. It just makes me feel better knowing I am talking to one person.

Another feature of the phone is the large numbers for dialing. At first, four years ago, it was kind of a personal insult to me (only in my mind) that the numbers had to be so LARGE. I didn't need large print, thank you. That was my attitude then. Though I still don't need it, I may in the future and I can't always be "stubborn." Why can't there be a smaller numerical keyboard? (I'm just sayin'). Or is this more marketed toward the aging population who have vision problems due to age. along with hearing loss? I would think that a lot of people with hearing loss may be using this phone do not have visual issues. I wonder how they feel with such a large numerical keyboard?

The CapTel phone is great for those who have a good speaking voice. I have a clear voice. My voice can pass for a hearing person, though I think, as my hearing continues to decline, it takes on a different tone.

If you know something more that I haven't mentioned or if I am wrong about something, please let me know.

This post is dedicated to two Usherites who inquired if I knew about CapTel. Thanks for the idea for a post on this blog. The timing couldn't have been more perfect. :)

Dolphins, Penguins, and Whales! Oh, My!!

Of course, there’s more to the title than that. We were riding high and low-on air and water.

The day started off with a nagging wake-up call from my trusty Sonic Boom alarm clock at 4 a.m.

I woke up Flare at 4:30. Gramma M. was going to pick us up at 5:15ish. Everyone going to the field trip to Chicago included all the 8th graders and their parents. Almost all had parents coming along on the trip, even sets of parents. This was BIG.

We all had to meet at the school lunch room at 5:30. The teacher did a roll call to make sure everyone was there. Then we had a prayer for a safe trip.

The Kobussen Coach bus (the second, 36-seater bus in the link) was waiting for u s outside the school door. It has a bathroom in the back!! The steps were a bit tricky. Four steps. I didn’t expect another step in the start of the aisle.Gramma M and I sat in the middle area of the bus. First thing I noticed was the seats: It was cushy and soft; not vinyl and stiff like the old school buses. It was weird not having a seat belt. Then I noticed TVs. There was three of them. One in front of the bus, right in the middle, then two more on each side in the middle of the bus. We were able to watch DVDs on the trip there.

It was a long, long, long trip to Chicago. Whew. It was a smooth ride. It wasn’t bouncy or noisy. I did hear a man talking on a cellphone here and there between DVDs. I couldn’t tell you what the movie was about because I wasn’t watching it. No captioning. I wasn’t interested anyway. I just gazed at the view outside the window. I must have dozed off a bit, too.

We saw the Sears Tower and the John Hancock building in the distance. Soon we stopped at the Shedd Aquarium. It was huge!! The first thing I noticed was the darkness. It was dark in there. Gramma M guided me through the labyrinths of the museum.

I loved seeing the seahorses and seadragons. That was cool. The leafy sea dragon caught my attention.

There were many fish and sea creatures, including coral.

Then we waited for a dolphin show. That was really fun to see them do their acts. They were constantly praised with food. At the grand finale, the four dolphins jumped to the side of the wall on their sides. Everyone clapped.

Then we went into the bowels of the museum where we could see them underwater. We saw penguins!! (Those of you who know how much I like penguins know how nutty I would get to see them.) They looked like they would be about knee high. Some waddled and kind of jumped around to speed up getting to their destination. They were really cute, I thought. I watched one pull back his arm-fins as he waddled. If I didn’t know better, I’d say he looked like he strutted loved getting the attention from all the visitors.

We saw whales and sea lions,too.

There was a gift shop in there. They seemed to be pricey so I didn’t want to buy anything. There were a lot of cute dolphin necklaces.

Soon, it was 12:30 and we had to get back to the bus. The teacher did a head count to make sure everyone was there.

We ate our packed lunches on the bus. Gramma M opened her Diet Coke bottle and sprayed fizz all over me and the window next to me. I didn’t have time to react. No big deal. I wasn’t going to melt. I saw the humor in it. (grin)

Soon we were headed to the area where we would get on a boat tour. We had to wait a while. At about 1:30 we went on the boat. I could hear the tour guide speaking, but it was just noise. I could feel the vibrations of the speaker on the boat, but I couldn’t make out what he was saying. It was just mumbo-jumbo. I gazed at the buildings as we passed them. Some looked like they were built right into the banks of the Chicago River. Before we headed out to Lake Michigan, we entered a locking area. We had to wait for the water to fill in. I remembered learning about locks in middle school, but never actually was in one. Cool!!

During some parts of the tour on the Big Lake, we were sprayed with water. Some were chunky. I covered up my ears so my hearing aids wouldn’t get wet. That must have looked superficial, but I didn’t care. Hearing aids are expensive and they can’t get wet. I didn’t trust myself to take them out and put them in my purse. I might drop them or lose them.

I was able to see the Chicago skyline from the lake. We saw the Ferris wheel at Navy Pier.

After the tour, we headed back to the bus. It was just after 3 p.m. I felt heat on my face and knew I got either sunburned or windburned or both. I developed a headache. I didn't know if it was from the sun and the water-glare or what. It came and went throughout the day, intensifying and ebbing.

Now we were going to the last leg of our trip, the Navy Pier. In my ignorance (I didn’t really research this), I thought the Navy Pier was about the Ferris wheel and about some sight-seeing. I didn’t know it was a giant mall.

We stopped to eat a Chicago hot dog. I haven't had a hot dog in ages.

Gramma M and I oohed and ahhed over the stained glass that was on display. I thought they looked like Oriental rugs in glass. Most of them were made in the mid-1800s. Wow. I am sure many were from old churches. There were a lot of them. One looked almost like the one in our church.

We walked around outside to look for the Ferris wheel. We were going north. Gramma M stopped some people to ask ferwhere the Ferris wheel was. Turned out we were walking in the wrong direction. Finally, the Ferris wheel was in sight. Gramma M has a fear of heights. She refused to ride on Ferris wheels. She tried calling Flare on her cell to "rescue" her, but got her voice mail instead. Gramma M decided to hold her breath and join me on the big, high Ferris wheel. She asked if they could slow it down so I could enter without fumbling around. Steps. Ugh.



We tightened our eyes as we ascended. But it wasn’t bad. It didn’t feel like eight minutes at all. That was how long the ride was. It was only one go-around. When she said we were at the top, I couldn’t believe it. It was the smoothest, least shaky Ferris wheel ride I ever had ridden on. Once we got to the bottom, Gramma M asked for them to slow it down for me get out safely.

Then we were off to do some shopping. We were already getting short on time. We found a store that sold tee-shirts. I got Flare a pink tee that said “Navy Pier hip chick” with a picture of a baby chick (in honor of her constant reminders to me to “get with it, Mom”) and for Angel I got a yellow tee that said, “Someone who loves me very much went to the Navy Pier and got me this shirt.” I also found some mini-black Lab beanie babies and got two of them. I thought about getting another dog breed, but I knew they’d fight over the black Lab. Might as well give one to each of them.

I couldn’t find anything for me in that store. So we found another store with shirts. I found a blue Navy Pier shirt in a neat writing.

It was 5:30 so we had to head back to the bus. The bus driver said that traffic was going to be horrible. Friday night rush hour in Chicago must be a bear (pardon the pun, Chicago Bears).

When we got back in Wisconsin, we were able to make another stop at a McDonald’s. By this time, the bus driver knew I had a step problem and I heard him say, “there’s a step, and another one.” Gramma M exclaimed, “You’re getting good at this!” I kind of laughed at that.

I wouldn’t have been in need of so much assistance, but I was in uncharted territory, I can go out and about in my own hometown. I know where everything is, unless of course, things are moved around on me. But everything else was unfamiliar. Or if I am not paying attention.

We finally got back home at 9:20 p.m. I was stiff and my neck even was sore from my throbbing headache. I think I really need to get better sunglasses. The sun just hits me in the eyes. I am using amber tinted sunglasses that are blue blockers, but I will have to look into special glasses.
(Like NOir).

Gramma M says she had a “neat, fun day.” I am glad. At times I felt awkward about needing so much assistance, but it was dark in the aquarium and there were steps galore-lurking everywhere that posed a hazard. I am glad she was there and willing to help.

Thanks, Gramma M.

When we got home, I showed the kids the stuff I got them. Angel was still up. Hubby took the day off today so Angel could get to school and home while we were gone. Since I was going to be on the class trip from 5:30 a.m. to around 9:00 p.m.., she needed someone at home. Thanks, Hubby.

There was an extra bag with the stuff I bought, full of pens and pirate stuff. There was even a package of plastic that turned out to be a little beach ball the size of a basketball when air was blown into it. I did not purchase them. Did Gramma M forget them? Flare called her on her cell. Gramma M said that the store cashier stuffed my bag with freebies. Oh. Okay. Mystery solved.

BTW, we did meet up with Flare off and on throughout the day. She was off with her friends.

She got a nice pink tee-shirt that said, “Chicago” with the Chicago skyline underneath of it. Really cool. If I’d have seen that shirt, I’d have wanted to buy one for myself. Oh, well. We didn’t really have much time to shop.

She told me about this incident: She was at the Ferris wheel with her classmates. A woman came up to her and shoved a pamphlet in her face. “I am deaf-mute. Will you buy this?”

D/d af people do not like peddling. They do not like how this portrays them to the hearing world. I was surprised at this. Had I have met this woman; I would have signed to her. She was probably not authentically Deaf-mute. D/deaf people do not peddle. They get angry when they see others do this.

(I never forgot the time I saw a man who said he ws deaf-mute and was selling little plastic American flags for $1.00 at a local resturant about 20 years ago. I signed to him and told him I was hard-of-hearing. He just kind of gave me a big silent laugh and shook his fingers at me. I knew something was wrong. He was faking it. Otherwise, he'd have signed back or at least gestured. He looked really nervous and left soon afterwards.)

Anyway, Flare says to her, “No. My mom is deaf and she doesn’t do that.” The woman just glared at her and walked away, muttering to herself. (If she were mute, would she have been talking to herself?)

All in all, it was a fun day. Would I do it again? Hmm, in six years, Angel will have her 8th grade class trip....

Conscientious and Compassionate Kids

My kids are always ready to give me a helping hand, especially in the dark. (Though they do need firmness when it comes to household chores, but that's a different story.)

If I am in an unfamiliar, darkened area, one of them will grab my hand and lead me a designated spot (chair, bathroom, car, etc.).

It's like they are on autopilot. It's second nature to them. They know Mom doesn't see that well in the dark. If there's a lamp that offers some visibiity, I will only see what's right in front of me.
It will be similar to this:

Everything else around me will be non-existent. I won't see it.

In familiar surroundings, I know where everything is. The brain has this great capacity to fill in the blanks so that you think you see more than you really do. I could move my eyes across the room and I would know where everything is. I might not see it, but I know it's there. All I have to do is dart my eyes back to that spot. That picture will still be there. My bottle of water will still be to the right of me. The person I am talking to will still be there (unless, of course, he/she moves away and I find out I am talking to air). The snapshot in my mind will give me, for lack of a better phrase, a false sense of security about my surroundings.

The girls are really good about it. They both understand it, yet I feel like I am making them grow up too fast.

With hearing loss, I guess I have many ways to make up it, such as watching facial expressions and body language. I don't always pick up on tones of voices, but the facial expression will make up for that-to a point. I have had hearing loss all my life. It's always been a part of me. I am used to the frustrations of not "getting" everything. This, I could live with.

My youngest will, as kids do, try to find a way to use it to her advantage. If I say "no" to something, she'll ask me again, over and over. Some kids may do this to wear down the parent. Some parents may break down and say, "Okay, fine." But, I take it in a different context. To me, it's like she's repeating it because she doesn't think I heard her right. "Mom, I said...." This is supposed to make it "okay." Is that going to get the"yes" answer she seeks? Nice try.

It's taking me a long time to accept visual impairment. I always look back to the days when my vision was better. When I was a child, my siblings and I, and the few kids we had in the neighborhood would play Hide and Seek. Or we would go swimming after dark or walk around the quiet country roads in the dark. I was able to see stars in the night sky. I remember hunting for nightcrawlers at night after a rain.

I was able to read for long periods of time without missing a line.

I dabbled in tennis, I enjoyed it. Now I would not play tennis. I can't keep my eye on the ball. It disappears from my line of vision and I can't find it.

Parenting is hard work. With a dual sensory disorder, I always hope that my kids will not take advantage of that. "Mom won't hear it or see it." They have on occasion tried to get away with things, but then again, what kid doesn't? There are times when I do not see or hear what they are doing, but again, what kid doesn't try?

I hope that they will have enough conscience to know what's right and what's wrong.

I know that my kids will be more sensitive and compassionate towards others who are "different."

And that's okay with me. :)

Extra, Extra!! Read All About It!!

Glitter Graphics

(To the tune of New York, New York... )

Start spreading the news.

I'm excited today.

I want to be a part of it,

A cure, a cure.

We've paid our dues...

I've heard some great news. Will this be a cure? Only time will tell. I try to stay positive that there will be a cure for us. It always seems that a "cure" that is a few years away ends up too far from reach. We've been hearing about "cures" the past 15 years. Dare we hope?

(Releasing some breath here.)

I don't want to get to excited. I don't want to be disappointed.

Foundation Fighting Blindness (FFB) has had some success with Gene Therapy. This was something I mentioned a while back when they first started clinical trials in London, England, with those who have Leber congenital amaurosis (LCA), a severe form of RP (retinitis pigmentosa).

Read all about it here. It's great news. It's a start.

Here is a video of this great news.

My inbox was flooded with emails about the success of Gene Therapy. Everyone's abuzz about this breakthrough.

FFB has many other research projects in the works for all kinds of degenerative eye diseases. Many people donate to FFB to help fund their research and clinical trials. I am one of them. I think it's a worthwhile cause.

Start spreading the news....

Pride and Independence

glitter-graphics.com

During the past week, there was a heavy discussion in an RP support group about independence issues with RP. Is really about losing independence or being inconvenienced? Is it about mobilty? What's the difference? I'd say it's interrelated.

Let me describe what I felt after giving up driving before we move on to independence, inconvenience, and mobility.

At some point, some beyond that point, we realize we can not keep driving, for whatever reasons-vision problems, health, age, etc.

If you are still driving, but walking into things, do you really think you should be behind the wheel of a vehicle?

You think, Okay, I'll scan more; I'll look left to right more. I can't see anything below my nose, but I can quick glance down at the dashboard to check how fast I am going. (It's so easy for the brain to make you feel like you see more than you think you can.)

Quick description of retinitis pigmentosa (RP)-the first signs are night-blindness, followed by loss of peripheral vision. Central vision (tunnel vision) may be retained or slowly get narrower.

The first thing I did, though, was stop driving at night. I hated being caught in the dark. If I was driving when the sun started to set, I would panic and hope I made all the green lights. I wanted to get home as quickly as possible.

There is a train that cut through town. It always chugged through between 4:30-5:00 p.m. When I got home from work, I had to get to the other side of town to pick up my daughter and it almost never failed, I got stuck by the train on the way home. (We all know in the winter hours, it gets dark around 4:30. At least, it does here.) My oldest daughter and I would sing, "Train, train, go away. Go find another way."

I made arrangements to get rides with co-workers, because it got too dark in the morinings to drive. I paid them for their gas.

I did a lot of things to narrow down any distractions while I was driving. I didn't want any talking while I was driving. Towards the end of my driving "career", I kept the radio off. I thought I was hearing sirens when it was coming from the radio. I wanted to be on the lookout for ambulances and fire trucks.

I avoided left turns unless I was at an intersection that had either four-way stop signs or traffic lights. Sometimes I went out of my way and added a few extra blocks to my route because I made a right turn.

I was doing okay driving in the daylight hours. Soon, the lengthening shadows of the trees from the late afternoon sun made it too "dark" for me to see the road clearly. And on rainy days or when the roads were wet, it cast a shine (glare) on the road that made it hard to see. (Glare is another enemy to us RPers.)

What made me to finally give up driving was the fact that I got "whiteouts". This would happen when I had to adjust to the sunlight after being inside a building. Just stepping outside (it didn't matter if I had sunglasses on or not) made everything appear white until my eyes adjusted to the light. Imagine driving and making a right turn--facing the sun. My eyes would get instant whiteouts. It took a few seconds to adjust before I would give the car a little gas to speed up. Finally, I told Hubby I had to "hang up" the keys. For good.

To be honest, I don't know if he was "listening". Was he in denial? Did he think it was safe for me to continue driving? I guess I was glad that I did this on my own. No one took my driver's license away. I knew it was time. I was ready. Around this time, we were planning a trip to visit my FIL and his girlfriend.

Ironically, it was they who finally drilled into him that I shouldn't be driving.

Within days I was snappy and depressed. At times I was tempted to hop into the car and drive. No longer could I just go anywhere I wanted, when I wanted. I had to PLAN. I had to give advance notice if I wanted to get anywhere. I lost my independence.

Sometimes I got a taxi; sometimes I walked. I didn't want to ride a bike, because I didn't trust my hearing to listen for cars. I grew more frustrated, because I like being punctual. Taxis are late or busy. At first I gave my husband lots of space. I didn't want to "bother" him. He was used to doing his "thing". I did all the "boring" stuff. Go grocery shopping. Get the kids new shoes. Take them to the big park. Visit some relatives. I felt like a burden, that I was inconveniencing others. It didn't matter if it ended up inconveniencing me to fit their schedule, especially if it meant I could get something done. In other words, I was not the only one adjusting. My family had to adjust with me. It's getting a little better, day by day. I don't drive. That's that.)

I've had to swallow my pride. I hated, and still hate, to ask for rides. I was afraid of being turned down or appearing desperate. When someone offers, sometimes I'll take him/her up on it, sometimes I don't. It depends. Most of the time, I walk. Dentist appointment? Walk. Hair cut appointment? Walk. I want to be sure I am on time. Sometimes I can't depend on taxis unless I tell them to pick me up an hour earlier than the appointment time just to ensure I am on time if they are delayed. (It's more of an inconvenience, if you ask me.) I find I am shorter on patience these days. Don't get me started on city transit. To get from Point A to Point B, it can be an hour an a half. Might as well walk a half an hour to get where I need to go.

What makes it harder is that sometimes it's not just for me. I have to arrange rides for my kids, too. (Sometimes for the three of us.) I've been lucky that their school was only eight blocks away so that they didn't really have too far to walk/ride a bike to school.

Now, my oldest is entering high school (a good 45 minute walk/20 minute bike ride) this fall. I may end up asking a neighbor who has a teenager going to the same school, if she'd be willing to pick up my oldest on the way to school.

Because the elementary school my kids were going to is getting old and there is no room to modernize it, the church and school is building a new church and school on the outskirts of town. I've mentioned my dilemma to the principal. The school bus service won't pick up my kids because they aren't a "special needs" child. (I wrote about this in a previous post.) So far, I haven't heard anything. (Moving out to the country just to get bus service is not a good option for me because the proximity to other services/businesses I have now would be gone, too.) I may start calling some parents to see if they drive by or live in the area and can pick her up/drop her off for me. Paying for gas is not a problem. As far as I am concerned, I have no car payment, no car insurance, no maintenance or gas to pay for, so it's not a big deal.

Getting back to the words "independence", "inconvenience", and "mobilty", what do they really mean?

Dictionary,net-1) The state or quality of being independent, freedom from dependence, exemption from reliance on, or control by, others, self-subsistence or mantenance; direction of one's own affairs withour interferece. 2) Sufficient means for a comfortable liveihood.

What is inconvenience?

Dictionary.net-1) The quality or condition of being inconvenient, want of convenience, unfitness, unsuitableness, inexpediency, awkwardness, as, the inconvenience of the arrangement. 2) That which gives trouble, embarrassment, or uneasiness, disadvantage, anything that disturbs quiet, impedes prosperity, or increases the difficulty of action or success, such as, one inconvnience of life is proverty.

What is mobilty?

Konsult-ease of moving about. Often specifically meaning access to a priviate vehicle for travel.

St. Louis Great Steets-Movement of people or goods within the transportation system.

Word.net-Quality of moving freely

Giving up driving is a loss of independence. It is an inconvenience to rely on others. Is it, then a state of mind? You can be "independent" as far as making decisions for yourself, but it would take a lot of adjustment to change the mindset that "independence" isn't about having your own car to go anywhere at a moment's notice. You just shift your "dependence" on your car to "dependence" on others. It is far easier to "depend" on your car and provide your own transport.
Transportation is a big issue. In our society, it is the norm to own your own car, thus providing your own transport at your convenience. I do not live in NYC or Chicago where subways are a common mode of transport. I do a lot of walking so I can retain some semblance of "control" over my independence.

Where does mobility come in? Finding other options of getting around.

There will come a time when just walking around freely may be just as "dangerous" as driving was. I will need to find other ways to remaim mobile to stay "independent". This will be my next step: The white cane. (Scary prospect, but for me to maintain mobility and independence, I will have to face that.)

I am a "closet" RPer in a lot of ways. Some people just don't realize I have a vision problem until I tell them. If they did notice something was wrong, they may attribute it to my hearing loss. If someone is trying to talk to me, I may scan my eyes to find the speaker. They may just think that I am trying to find the speaker by sound, not by sight. I will have to overcome my fear of coming out of the proverbial closet. The only way that can be done is to start doing it. The more you do it, the easier it is. As one RPer said, "I am too busy watching where I am going to pay attention to people's reactions."

Thanks for "listening".

Roll the Dice

Off and on through the years, I've been asked, "What are the odds of getting Usher syndrome (US)?" or "What is the prevalence of US?"

According to Boys Town (scroll down the webpage to find US in the link provided), the prevalence of US is 3½ out every 100.000 people. About 10% of children with sensorineural hearing loss have US.

NIDCD says: About 3-6% of deaf children and an additional 3-6% of hard-of-hearing children have US. It also states that about 4 out of 100.000 babies born in the USA have US.

From the WrongDiagnosis website: There are about 16.000 Americans living with US. The rate is about 1 in 17,000 (0.01%).

There are about 300 million Americans living in the USA today. The 16,000 Americans affected by US is a small number by comparison. US is a very rare disorder.

US is an autosomal recessive disorder. (This link has an excellent diagram explaining the inheritance pattern.) Both parents must have the gene in order to pass it down to the offspring. It is in the genetic makeup much like how the color of our eyes and hair is decided. One "brown eye" gene is taken from each parent in order for a child to get brown eyes.

-There is a 25% (one in four) chance of the child NOT getting either US gene. (Child is asymptomatic and is not a carrier).

-There is a 50% chance that the child gets one gene and becomes a carrier (asymptomatic, but may pass it on to his/her child only if partner has the gene).

-There is a 25% chance that the child gets an US gene from each parent. The child has US and is a carrier, too. (Because my partner did not have the US gene, my children are not affected, but they are carriers because I have it.)

Looking over the prevalence and incidence of US, it makes me wonder how come I am not so "lucky" winning the (lottery) jackpot?

Pride Can Get In the Way

Or is it stubbornness? Wanting, no..needing some semblance of independence?

Helping Hand

When someone lives with a disablity or two or more, it's like being caught between a rock and a hard place. You want to prove you can do things on your own. You may get a little angry that someone underestimates your capablities and gives you "unwanted" help (even if you know you could use a little help).

It's a pride thing. Most of all, you want to prove it to yourself. I CAN DO IT.

But, sometimes it backfires. You do "normal" things. You are not "forgetting" your limitations. You are doing what you CAN do. Then some people look at you and think that you are "faking" it. They begin to think that you aren't "blind". They don't understand. How could they?

Picture this scenario: A person is standing in line at the checkout area, browsing through a magazine. But this person has a white cane leaning against the grocery cart. Other shoppers saw her sweep the cane while tugging the cart behind her. Some even saw her reading labels. Some give her dirty looks, thinking, "She's not blind."

Some people have the mistaken conception that those who use the cane are totally blind. Not true. I have touched on this topic before, but more about how I worry that people will think I am faking it. Now I want to give you a little more insight.

Reading this article, I could relate to some of the things that he said.

Here are examples:

"As a disabled person, there’s certain times that I don’t want to appear to need that much help. ...Roosevelt by 1932 was still able to walk a certain distance, but not quickly, and he wanted to walk in, he wanted the country to see him standing, and but what happened was, when he started to walk, and he got toward the end, he was starting to be a little jittery, that a bunch of supporters, thinking they were helping him, grabbed him and picked him up and carried him in. And you see in this picture — and I couldn’t really see it, but he described it to me — he has this stern, angry look, because they messed up his moment.

And I know what he was feeling. Because sometimes you want to project a certain amount of strength. And you can project it if you’re a woman, you can project it if you’re disabled, you can project it, but often the people who love you don’t see the need for you to project it."

There are some people who worry too much about what I can or can't do and they step in. Sometimes I appreciate it, sometimes I get frustrated. I CAN DO IT!!

"When I am in places where I am familiar, I will appear to see better than in places where I’m not. If I walked around my house, and you didn’t know, you’d probably think I have no vision problems."

I can get around in my own home. It's familiar territory. When I know where everything is, I'm fine. I'm "normal". I know where the pews are at church. I know where all the landmarks are. But if you switch things around on me, it will take me time to get used to it. For instance, I may have gone to a certain store often. Now they moved things. Sure, it might be a tactic to get shoppers to move around the store more to look for that item, but it can lead to impulsive buying. I'll manage to navigate unfamiliar territory, but it's frustrating. I want to know where everything is.

"When I say I saw something, it’s more like I sensed it."

I have a different take on this because of the RP. I have what is called "islands of vision" or holes in my peripheral vision. It's like having horse's blinders on, but poke some holes here and there. Sometimes, I'll "sense" movement and turn to look directly at it (my central vision is still good) to see what caught my attention. I want to point out that not all RP cases are the same. Some RPers don't have any peripheral vision at all. What I see is unique, but similar. The progression rate is different for all of us, too.

"...as soon as people see that I can be independent, they hold me to the standard that everyone else is. So I remember once I told the airlines that I had a sight problem, and they put me on this bus to go to a hotel because there were no other flights out of the airport that night, and I gave up my seat to everyone got on and they passed me, and then like this 90-year-old woman, who was trying to get up the steps, and I couldn’t take it anymore so I helped her up the steps, gave her my seat and took another seat. First stop, the bus driver tells me to get off. And I know that he’s doing this now because he thinks I have no problem. He goes, “Go that way.” And I almost fell in the wishing well in front of this hotel. That’s because he saw me able to fend for myself."

That's the thing: A catch 22 situation--you're darned if you do, and you are darned if you don't. Some people are too judgmental. That's why it's so important to educate the public. For advocacy. To get the word out so that people can "understand". Having a disablity isn't an all or nothing kind of thing. You are just limited, but you can still do things.

"So I think I have now learned — and I’m not doing this to be deceptive — but I don’t act the way I did when I was 17, like I can do everything myself, because I realized the minute I do that, no one helps me. So I learned to be a little more pragmatic about life. "

I may still act independent; I don't like to ask for assistance. Maybe it's because I am a woman and women are considered "weak". It's easier to ask for help as far as my hearing goes, but I have lived with it all my life. The RP journey I am on is a slow, frustrating thing.

I can't imagine how RP can be for a man who thinks he has to be the provider, the "strong" one. I guess that's another topic for another day.

It's Not Fair

School Bus

We all have those moments when we feel like screaming, “It’s not fair.” Life isn’t fair. You gotta take the lumps and deal with them.

As a child you try to get your parent to change their mind about something. “It’s not fair!!” Maybe it’s about sibling rivalry.

"No fair. She gets to stay up longer than I do!!” or maybe it’s about sleeping over at Gramma’s house. “She went last time. Isn’t it MY turn? No fair.”

You hear about it in school, in the work place, or any place out in the world. There’s rivalry, “me first”, and then there’s the “privileged”. It’s a part of life. Some people get their way.

When life gives you lemons, make lemonade. Isn’t that what they always say? Life is not fair, you just have to move on. Nothing gets handed to you on a silver plate.

Since my oldest was going to go to high school in the fall, I thought I’d see if she could get school bus service.

I tried this two years ago, but I was told that it was not “hazardous” enough. There weren’t any major highways for the kids to cross on the way to school. They walk eight blocks to school. It’s only a 10 minute walk. That’s not too bad.

The high school is about a 45 minute walk from our house. On top of that, a new church and school is being built on the outskirts of town. The old one will be closed at the end of the school year. My youngest would need transportation to get to the new school.

I called the local school bus. (Lucky for me, I got to talk to women who I could understand most of the time.) I was given another number to call. I describe my dilemma. I am legally blind. I can’t drive my kids to school. How are they going to get there?

The conversation went like this:

Person on phone: Where do you live?

Me: Right in town.

(Most school buses are provided for kids who live in the country.)

P: Do your children have a special need?

Me: No.

P: We can’t help you.

M: Even if the parent has disabilities? Only if the child has a special need? Is that fair?

P: I am sorry. I do understand. You could consider city bus transit or maybe the school can help you?

M: I've already told the school about the situation. Haven't heard anything. Well, thanks for your time.

(I was curt but not overly mean as I hung up the phone. I know it wasn’t her fault. It was just the system.)

City transit? Uh, sorry. Call me judg”mental”, but I don’t like the idea of having my kids wait an hour and a half while transferring on two different bus routes in the morning and afternoon. Too time-consuming. Maybe I am overprotective, too. Maybe I watch too many shows like Law and Order. I don't want them standing at a bus stop at 6 in the morning and getting home at 5:30 p.m.

The school? Like I said, I talked with a few teachers about it. I wanted to see if anyone would be happy to carpool, to pick the girls up for me and take them home from school. I'd be happy to pay for the gas. I haven't heard anything. I just want to take care of it early. Get a head start on it so I don't worry about it.

I'm not looking for a free ride. I am willing to pay for the bussing services if I have to. I don't drive. I don't have a car payment, car insurance costs, car maintenance, or have to fill up my gas tank. That money can go towards transportation.

We need to change something. How many parents with disabilities (any kind-cancer, paraplegic, blind, etc) would like to be able to have school bus service for their kids? What does it take to wake them up? A petition? This is ridiculous. Something has to be done.

Inquiring Minds Want to Know

Glitter Graphics

Which dog will it be? Lab, Goldie, or?

(I know, no Labs or Goldies in this graphic, but it seemed so perfect!!)

My fellow Usherite has started chronicling her first day at a guide dog school. It's so interesting to see what goes on there and how you learn to be a team.

I am so excited for her.

I can't wait to see what kind of dog they have for her. They just know which dog is right for a handler (blind/low vision person) by their needs and personality and where they live.

First you have to give a guiding school personal information, medical records about your eyes, and a video showing the walk around the neighborhood with your cane. Yes, that's another requirement-to know how to use the white cane. (Something I still have to do yet. Yikes. A post for another day. See my old post My Skeleton.) Anyway, after the school evaluates the needs of a blind/low vision person, they already have a dog in mind for that person. Isn't that neat?

Get this, they will see if the dog can be trained to help her wake up to her alarm or hear one of the kids cry. I thought that it would be too much for a guide dog to do double duty. It needs to rest some of the time. Maybe not.

Go over to Kacie's place and share in her excitement.

Game Night

(I am aware that the picture didn't fit the whole frame-I cropped it before uploading it, but it ended up like this. Oh well.)

I picked up a game I thought we could play together. It's called Cranium Cadoo. A child seven and over could play it. I never played the adult version of Cranium so I didn't know what to expect. It was on sale for $7.00. What the heck? More family fun. The last game we tried, Tri Bond, Jr, was a hit. It was fun; it was similar to Blue's Clues with three clues to guess the answer.

We got the game ready. I thought it was pretty cool. You could shape something with clay (it was included) and have a player guess what you molded. Or draw a picture, act it out, or guess an answer. What fun-a bunch of different activities to do within one game.

Until...I had to read the answer with 3D glasses (see graphic above). I put the red cellophane-y glasses to my face and tried to read the "coded" answer on the bottom of the card. I couldn't read it!! I started squinting at it. I got a flash light. I aimed the light at the card. There. I did it. Then when it was my turn again and I had to read through those glasses, alas, I couldn't make out the words. :(

Needless to say, I was saddened by this step in the RP process. Red is just not a background color for me to read through. Or reading 3D concealed notes. As I mentioned before, I can read 12 point font print just fine. I read books, magazines, newspapers, and blogs without problems. Gottta think about the positives-what I can do.

Life is never boring. Always something new. Always something new to adjust to.

Makeover

Glitter Graphics

I have been wanting to change the colors of this template for some time. I tinkered with it. I switched to this template because I liked it better than my old one, but I still wanted the darker background for others with RP (or other vision problems) who may like to read this blog to have contrast. I looked at the other choices I had for templates and didn't like them. So the only option I had was go "behind the scenes" and tinker with the HTML code. The last few days I had the time to do it since Christmas is over the the pressures of school is behind me. I almost completed my makeover a few days ago, but I had a couple of "blemishes" to work through. I enlisted the help of a friend. I overlooked something. It was more that I thought it didn't work. So I went back into the HTML gibberish. This is the result. It isn't exactly what I wanted, but it's close enough.

Some people with RP need a dark background with a white or yellow font to be able to read better. I can still read with a white background with a black font. Some blogs have a dark background and they put a red or blue font in it and I can't read those so I just highlight them. I don't complain.

Some of them (those with RP) need to have the font increased. They get a software called Zoomtext. It can increase the font size and change colors of the font and/or background. Some may also have a CCTV (closed circuit TV). Some can't read a book anymore. They can scan a page of a book on the CCTV and the page appears on the computer in a larger font.

Technology is always there to help the disabled. It can be expensive. For us, we need one for our hearing (i.e., hearing aids, FM system) and our low vision (i.e., canes, CCTV). That can add up.

I may continuously change the formatting of this blog to fit the needs of others. Thank you.

Final Diagnosis

Microsoft clipart of medical symbol

With three out of six kids with hearing loss, my parents were told that it was caused by ABO blood incapability. My father had A positive blood type and my mother had 0 negative.

My two oldest brothers were born “normal”. (Who’s normal? ;) ) When my oldest sister (R) was about three, my mom noticed something wasn’t “right”. By that time, child #4 was born (my third brother, J). My mom took R to a doctor. A diagnosis of mental retardation was made. The doctor said that R should be institutionalized. (This was the early 1960s.) My mom refused to believe it. R was bright-eyed and could tie her own shoes at the age of three. She was “all eyes” (curious, absorbing information).

She took R to different doctors. Finally, a doctor said that she was hard-of-hearing (HOH) and referred her to see an audiologist. The audie (short of audiologist) tested her and fitted her with hearing aids. My brother J was also tested. He, too, was HOH. The audie recommended intensive auditory lessons.

As I mentioned before, my two oldest brothers did not have hearing loss. Perhaps it was similar to the complications of Rh factor, so ABO blood incapability seemed to make sense.

My second sister W (child #5) was born with a high bilirubin count. She was immediately given a blood transfusion and had severe jaundice. If it weren’t for the blood transfusion, she would have had cerebral palsy.

When I was born (yes, I was the “baby”), the doctors were watching for complications. I had jaundice, too. The doctor, my mother said, did something "different" with me compared to what they did with my sister. I “ended up HOH”, too. I think because my sister wasn’t HOH after her blood transfusion, my mother thought that if I had one, maybe I wouldn’t have had hearing loss.
The jaundice had nothing to do with my hearing loss, though I can see why the doctor came to the conclusion. It wasn’t until we were in our twenties that we found out that the etiology of our hearing loss was from Usher syndrome.

I was already fitted with hearing aids when I was 18 months old. I didn’t talk much for an 18 month old. Once I started auditory lessons and started talking, my mother joked that I made up for lost time. I wouldn’t “shut up”.

Fast forward to our twenties…

I remember my oldest sister, R, coming home from college break and saying something about not seeing “right” in the dark. She and I were four and a half years apart. I didn’t really take too much stock in what she said. I promptly forgot about it.

She got married in her mid-twenties. A year after her wedding, she stopped by to tell my parents that she saw an ophthalmologist and he told her she had retinitis pigmentosa (RP). I was not used to seeing her on the verge of tears. She was my big sister, the tough one. She was not one to carry her emotions on her sleeve like that. She was the one who would face/make confrontations and was very outspoken. We had our differences while growing up. I admit I was afraid of her at times; she was so bossy and mean. At the same time, I admired her and looked up to her, too. It seemed like she had the Midas touch with sports and was very competitive. She was a big basketball and shot put/discus star. She excelled at everything. She was a master dart shooter, too.

We get along so much better now, but we don’t live have to live under the same roof, either. ;) (Love ya, sis. ;) )

I didn’t really get the whole story when she stopped by to talk to my parents that day. I do remember hearing her say, “I’m going blind.” Was she exaggerating? There was no family history of Usher syndrome.

I saw my dad kind of shake his head sadly, in shock. My mom didn’t say anything. That’s all I remember about that visit.

A few months later, my brother J was adding more lights to his pick-up truck. He was having a hard time seeing in the dark. He thought adding more lights to the truck would help. R told him to get his eyes checked. He, too, had RP. He was about 25 at the time...

Somehow, seeing that both R and J had RP with hearing loss, I wondered if I had it, too. I didn’t notice anything wrong with my eyes or anything at the time. I was paranoid. I thought that maybe there was a connection to the RP and hearing loss. (Imagine my surprise when there really was a connection.) After all, my hearing brothers and sister did not have RP. My hearing sister W worried about getting RP and had her eyes checked when she was in her late twenties. I told her that she wouldn't have it because she wasn't born HOH. That was the classic symptom of Usher syndrome Type II.

So I got my eyes checked. I was about 22. The eye doc didn’t see anything wrong. He gave me a field test and I was fine. I thought I was off the hook. Maybe I didn’t have to worry about it.

Over the next few years, I thought my eyes were playing tricks on me. (Now you see it, now you don’t.) It’s easy to tell yourself to look where you are going.

I thought it was a “sympathy” kind of thing…that it was all in my mind because they had it.

I got married when I was 24. I remember my brother J telling me about Usher Syndrome Type II. He gave me some papers on it. I read it disconnectedly. I was curious about it. I didn’t think I had it because the doctor said he didn’t find anything wrong. It was probably in the early stages so it wasn’t noticeable.

I started walking into things. I thought I misjudged the distance because I saw it before I walked into it, especially in the dark.

I finally went to get another opinion. Was it all in my head?

The doctor told me that I did indeed have RP. I guess I was not surprised, but I so wanted him to say it wasn't. I was about 28 at that time; I had a toddler and a full-time job. (This was around the time the profile picture in the sidebar was taken.)

It’s so easy to be in denial. Ignore the signs. Pretend it’s all in my head. It was safer than facing it.

I am not so much in denial anymore. It’s there, an ugly reminder every time I “miss” something.

Most of the time, I laugh about it, but sometimes I cry inside. It’s frustrating. I hold on to the hope that most people with RP retain central vision for a long time.

In the meantime, I just go day-to-day. That's all you can do.

2007 Recap

2007

Reading the paper the other day, they always recap the top stories of the year. Wildfire in California, Bridge collapse in Minneapolis, Virginia Tech, and on and on.

I thought I would go filter through the blog and find what I thought were my "best stories" of the year. Some were pretty recent (in December) so I skipped those. If you don't have time to read it all or if you remember some of these posts, that's fine, skip them. You won't hurt my feelings. :)

Twinkle Twinkle Little Star This is about how I remember seeing stars when I was younger and how I miss seeing stars.

The Nothing -Growing up and having RP slowly eat away my vision.

How Do You Do? Shaking hands is polite, but what if you didn't see the extended hand?

Adventure at the Lake A funny day at the lake.

Invisible Disability Don't judge people.

Sign Language How signs can be different.

Artifical Vision The research that is going on to find a cure for eye diseases.

A Day in My Life A typical day in my life and what I do or avoid or look out for.

You Just Do How do I deal with Usher syndrome?

Talk to Me My audiogram (recording of what my hearing is at) and what I can hear.

Service Dogs and At Your Service This is where I talk about guide dogs for the blind, deafblind and some tips when meeting a guide dog team.

Thanks for stopping by. XOXO

Price of Independence

Glitter Graphics

When we go out to eat, I like the family-style arrangement (when the food is brought to your table and you serve yourself) or just ordering the food and having it brought out to you. Then again, there are times when buffet-style dining is great, because then you don't have to wait for your food. You just get up, get the salad fixings, soup, and meal of your choice. This is really nice when you are absolutely famished.

Over the past few years, I've begun to hate buffet-style dining. I worry about bumping into people lining up to eat. I worry about bumping into 1,395,599 chairs on the way to and from the buffet. This is especially hard if the person in front of me has dark clothing on. I may want to reach for a handle for a food item only to realize that someone is in front of me. I usually stare really hard in front of me to see if I see any movement so I don't collide into someone.

We still go to places that offer buffet-style dining. Sometimes Hubby will carry my plate to the table for me so I don't have to worry about tripping over something on the way back. That helps, but it's another one of those "I want to do it myself" pride moments I deal with. I would rather have the person ask me if I wanted him/her to take my plate. I wouldn't like it if it was just taken out of my hands. Independence is something I am having less of and I want to hang on to as much of it as I can. I don't want to be reminded that others are aware of it or if they are not aware of it, that something is "wrong". (Which is weird when you think about the fact that it doesn't bother me to tell people I am hard-of-hearing. Then again, hearing loss is something I have had all my life.)

I am still me. More and more, I can empathize with the elderly and their frustrations. They remember what their bodies used to do. They were young and strong. As they get weaker and older, they want to hold on to their independence. Some older people drive a lot longer than they should. (Like I did.) Some walk a lot slower than they used to. (Like I do, sometimes, especially in crowded places.) I empathize. I understand. It's the pride thing. We were capable of things before. We don't want to let go.

The way I look at it, my eyes are aging faster than the rest of me.

Blinded by the Light

www.trustedreviews.com

When I am facing a window during the day, it compromises what I can see. Not only do I suffer from nyctalopia (night blindness), I also suffer from photophobia (light sensitivity).

If a person is sitting with his/her back to a window, all I see is a dark silhouette of the person. I try to tell people that I can't see anything when I have to look at them with the light in the background. It just strains my eyes. I would rather be the one sitting with my back to the window or a lamp. Once in awhile I am brave and I would tell the person to trade places or I would hope to "beat" that person to the seat by the window. It would help if the blinds were down. Sometimes that's not possible, like in a restaurant, eating out with family and friends.

I don't know what's worst-eating out during the day when the sun's shining through the windows (instant whiteout) or at night when the restaurant dims all their lights to make it "romantic". I can't win.

I won't make a big issue out of it. I am always quiet when I go out anyway. Too much background noise-other patron's voices, maybe music, clinking of glasses and forks, waitstaff asking if everything is okay, etc. Sometimes when I am comfortable with the person I am with, I'll ask that I have my back to the window. Otherwise I just can't look in that direction without getting that "whiteout" and seeing dark shapes that are people.

Maybe it's not just me and others with RP/Usher Syndrome or any other eye disorder. Maybe everyone prefers to have their back to the window because, he/she also gets eye strain. Or maybe because they want to look around the restuarant.

I know it's about speaking out, but sometimes you just don't want to seem rude. In the meantime, I'll just have to see what specialized low vision sunglasses that have anti-glare properties there are and which ones I could wear indoors. I can't wear just any pair of sunglasses; if it's dark, I can't see through them-the nightblindness thing kicks in. That's whole different topic....