25 Years later…#ChangingLives25

mj-lcb-training-nyc-may-2004-2

(Caption: Mary Jo Thorpe, Times Square NYC O and M training, May 2004)

This month marks the 25th anniversary of when I went blind. Each year when the time comes around, I like to acknowledge it to myself in some way. It’s not exactly something I celebrate, but it’s not something I memorialize with sadness either. I guess I just like to acknowledge the passing of time for a life-changing event that really redefined me. Given that this year’s anniversary is a significant, milestone, I feel a desire to do something more profound to mark this anniversary, so I’m calling on the support of all my friends and family to assist me in this undertaking.

For those of you who may not know, I went blind at the age of twelve very unexpectedly due to an allergic reaction to a medication called Tetracycline—or at least this was the only thing we could point to as a cause. . Below I’ve shared my story with you for those who may be interested. I won’t sugar coat it and tell you that the rest of my life from that point on hasn’t been filled with struggles, tears, and frustration, but it’s also been filled with choice experiences, lots of personal growth, great supports, and tremendous opportunities that I could have never foreseen. One of the turning points for me after a period where I felt like I’d hit rock bottom with respect to blindness was enrolling in the Louisiana Center for the Blind, the leading blindness rehabilitation training center in the country. I could write volumes about how this experience changed my life and provided me with skills and confidence I didn’t know I was lacking. So, in an effort to commemorate my 25 years, I want to do something to give back to a cause that made such a difference in my life.

My husband, @Jesse Hartle (also an LCB grad) and I are organizing a donation campaign for the LCB. Our goal is to raise $25,000 by April 30th of this year. Yes, this seems extremely ambitious, but go big or go home right? Our lives have truly been impacted for the better and we want to give back  to something that is near and dear to our hearts.

We are inviting our friends and family to make a tax deductible donation to the LCB, even if only $5 or $10. Any amount will be greatly appreciated and adds up. To do so, please visit http://www.louisianacenter.org and click on the “Donate” button at the bottom of the page. There you can also learn more about how your donation helps to support programs for both blind adults and children—also a cause that is near and dear to my heart. . Also, when making your donation, you will be asked if you are making this donation on behalf of an individual. Please just type in “ChangingLives25”so that we can track the amount raised with this effort. Then we also ask you to share this link with your friends to help us spread the word. Thank you in advance for your help with this. Now, I’d like to share my blindness journey with you.

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I lost my sight at the age of twelve due to an unexpected allergic reaction to tetracycline, an antibiotic that I’d been exposed to at various times in my life. Up until that time, I had been fully sighted– 20/20 vision. It all began in December 1991. Over Christmas break I started experiencing prolonged double vision and began to have terrible migraine-like headaches and pain down my shoulders and back. My mom took me to see our pediatrician and he passed it off as flu-like symptoms and said just to rest and drink lots of liquids. I was pretty miserable over all of the holiday and things continued to get worse. I remember going Christmas shopping with my mom and actually lying down under the clothing racks in the store while she looked at things because I felt so terrible. I even went to a chiropractor a few times to see if there was some kind of pinched nerve causing all the pain and double vision.

On January 2nd, (a Thursday) after offices reopened and things got back to normal with the new year, my mom took me to her eye doctor for a checkup. He ended up sending me for a CT scan and later announced to us that it wasn’t a tumor. What? This was completely not something we were expecting to hear as we didn’t’ even realize he suspected something of that nature. He then proceeded to refer me to a neuroopthamologist at the University of Utah Medical Center. I had another couple of checkups that afternoon there, an MRI, spinal tap, and was admitted to the hospital that evening.      I was diagnosed with a condition called Pseudo Tumor Cerebri which basically means false tumor on the brain. Apparently I had a spinal fluid build up that was causing the pressure headaches and effecting my vision. Over the next three days, I had four spinal taps and countless examinations.   As you may imagine, this was quite a shock and a bit of a whirlwind of activity and emotions for me and my family.

The following Tuesday, Jan. 7th, I had my first nerve sheathe decompression performed on one eye. Up until this point, my vision was still 20/20, but I was still seeing double unless I closed one eye. The surgery was intended to drain excess spinal fluid directly off of my eye. By that Friday, the 10th, my vision had declined so much that the doctors decided to do the same procedure on the other eye. Within that week, I basically went from 20/20 vision to what I have now—20/800+, and lost a portion of my color perception as well.

On February 7th, I was admitted for surgery again to have a spinal shunt implanted that would hopefully help drain the fluid more and prevent this from happening again. I continued to see my doctor weekly for monitoring. My vision remained the same and never improved. I was in seventh grade at the time and had been out of school since the middle of December. Throughout the ordeal, I just kept thinking that things would get better and my eyes just needed to heal. I was ready to go back to school and back to my normal life.

Around the Middle of March, I remember going for a checkup with my neuropthamologist and asking her when things were going to get better or what they were going to do next; and when I’d be able to go back to school. I remember her saying that they had done all they could and that I could go back to school anytime. I remember asking her something like, “What do I do now?” To which she replied something along the lines of, “just go on living your life.”   I remember feeling a little confused and surprised by her response. How? I thought. What do I do now?” Again, I was now almost thirteen and this all still seemed so surreal to me. My doctor then suggested that we get in contact with the Utah State Division of Services for the Blind and see what kind of support and resources they could offer us. Up until that point, it hadn’t really hit me that I was going to be blind. I’d made jokes about it to some of my friends and family over the past few weeks that I was the “Blind Lady”, but this didn’t bother me because it wasn’t true. This was supposed to get better. I also remember then feeling a little let down because there was nothing left for the doctors to do, and just…sad. This wasn’t the outcome I had expected.

I continued to hold onto hope that my eyesight was going to improve. It just needed time.

About a year or two later, it started to hit me that things were probably not going to get any better with my vision. Around that same time a cousin of mine, in an attempt to be funny, told me about a documentary he had seen on nerves which basically explained how nerves don’t regenerate. So, because my blindness was caused by damage to my optic nerve, I was going to be blind permanently. While I didn’t appreciate his bluntness at the time, (and felt like punching him), I knew he was right—not because the documentary said so, but because I knew so. I remember putting on a brave face, but later coming home and crying at the realization that it might be time that I start accepting that this was how things were going to be for me. Shortly after that, I finally determined that no matter what, I would make the best of this experience and not let blindness hold me back.

I won’t sugar coat my experience and tell you that it hasn’t been hard. I’ve had my angry moments and cried more than my fair share of tears in frustration many times. Thankfully though, I was (and still am) blessed with a great support network of great family and friends. I think that, along with my faith in God is what really got me through the hard parts. I have also had some very special experiences which have helped to strengthen me and shown me that good could come from my circumstances.

For the next few years, I muddled through the rest of junior high and

High school with CCTV’s (large T.V. screen magnifiers for reading my textbooks), large print, getting classmates to read things to me in class, and books on cassette, yes, dating myself a bit. We also installed a large classroom size blackboard on the wall of our kitchen where I would nose-read and work out math problems for my mom to copy down on my notebook. My family drove me places, and walked routes around my schools with me so I could memorize them. I never learned braille or used a cane and pretty much didn’t consider myself blind. . I continued to participate in dozen of school and community clubs, and I graduated with honors from high school.

College was a bit more challenging only in the sense that I didn’t’ have my family to lean on, but I had good roommates and I figured out strategies to get by, or tricks like avoiding areas with lots of stairs by taking a longer way around to a building. Not the best approach, but I did what I had to do. I got notes from classmates, took tests with readers, and spent hours with math and stats tutors reading me problems and copying my work from a blackboard onto my assignments. I thought I was doing great because I was getting by, seemingly well too, but things could have been so much easier and better had I known then what I know now.

In retrospect, even though I was involved in a lot of things and had a lot of great opportunities growing up after losing my vision, I feel like I missed out in other ways. I didn’t realize how much I lacked in confidence or avoided certain activities because I didn’t know how I’d do them. I realize that it was easy to hide behind hours of homework and difficult honors classwork than to have to go and participate in something out of my comfort zone where I didn’t’ know how I’d get aroundor meet and recognize people.

Fast forward a couple more years. I graduated from college, and began a post bachelor’s degree program at a renowned children’s hospital to become a certified child life specialist. Two years later, I ended up failing my internship because of my blindness. During my internship, I found myself enrolling for a three month blindness skills training program at the Utah Division of Services for the Blind as a last stitch effort to salvage my internship, but this proved to be a waste of time as the program at that time really did nothing for my confidence or gave me real reliable skills training.

Failing my internship was like hitting rock bottom for me with respect to my blindness. I couldn’t fake getting by any more like I’d done for so many years, and frankly I was tired of doing so. After all of this, I found myself re-evaluating my life and next steps. I’d never failed anything, so that alone was a low blow. But, what really hurt was that I wasn’t allowed to sit for the certification exam because my proctors felt that I could not adequately perform the tasks of the job without full vision, and I couldn’t show them otherwise at that time, despite how well I had performed in other aspects of the program.

Also around this same time, I was really starting to question what the next chapter in my life would look like. I was an adult now. The general societal expectation now for me was to move out on my own, go on to graduate studies, or find a real job, and hopefully get married and start a family. Each of these things required some greater level of independence than I felt I had at that time. I wanted these things too but wondered how I would be able to accomplish them. Up until now, life had been relatively easy. I’d either lived at home, or been away at school. Even being a college student brought a certain level of stability and security. It seemed like whichever path I decided to pursue, or just adulthood in general, brought with in new blindness obstacles which I was unequipped to handle successfully.

Later that fall, through a series of unexpected events and continued involvement with an organization I’d encountered a couple of years earlier—the National Federation of the Blind –I was accepted to a Masters of Education program in Blindness Education at Louisiana Tech University. As part of the requirements for the program, I had to also enroll as a full-time student at the Louisiana Center for the Blind, the leading blindness rehabilitation program in the country. Even though I was reluctant to participate in the training program (graduates refer to it as “boot camp for the blind”), deep down, a part of me knew this was something I needed to do. I’m so grateful that I did. My experience there truly changed my life. I could write volumes about how this experience and skills training gave me a new perspective and confidence that I didn’t know I’d been lacking. I learned how to navigate safely and independently under blindfold with the use of a long white cane. I traveled in airports, train, subway, and bus stations, and cities across the country including New Orleans during Mardi gras, and New York City under blindfold. I cut down a Christmas tree with a hatchet and learned how to operate power tools without vision which boosted my confidence and taught me that I could find adaptations to make any task in any future job doable.  I prepared a meal for 50 and cleaned up after it all while wearing a blind fold which helped show me that maintaining a home was possible. I took summer camp children to water parks and grocery stores under blindfold which gave me skills to care for my own children someday. My life was truly changed by these experiences and I am forever grateful.mj-lcb-training-ropes-corse-tenn-9-2004

(Caption: Mary Jo Thorpe, high ropes corse, Smokey Mtns. Tenn.Sept. 2004)

Looking back on the last twenty-five years of my life is a little bitter sweet. Sometimes I wish I could go back and tell myself what I know now so as to have spared myself some of the heartache. But I know I needed to go through those hard things to get to the place where I am now. UP until that point, I was getting by, and doing a pretty good job too, but by finally deciding to embrace or accept my blindness, I let go of an immense amount of anxiety and a facade I didn’t realize I was using. My life feels so much fuller and authentic as result. I’m so grateful for the experiences I’ve had and just hope in some small way my experiences can help make someone else’s experience, whatever it may be a little bit easier. Thanks for reading.

Perks of Being a Blind Parent When it Comes to Not Driving

Recently I had a little epiphany that led to the inspiration for this post. It’s easy sometimes to find all the negative things about being blind or the disadvantages…not being able to drive, see the thing your child is enthusiastically trying to point out to you, sit on the floor and look at picture books with your little ones , etc. But I had a moment recently that put things into perspective for me and made me realize some of the benefits or advantages to being a blind parent when it comes to not being able to drive. .

 

Since I don’t drive, I often sit in the back seat next to my children. I have a habit of holding hands with my children while we ride places. I guess it started with my daughter when she was a toddler as a way to console her when she was a baby, but I also have noticed that during this time I often find myself showing some kind of affection to whichever child is next to me—stroaking their heads or cheeks and holding their hands. On one ride recently, my three-year-old son eagerly petitioned for me to hold his hand moments after we began driving. Up until that moment, this was just something we did—a sweet little thing between me and my children which I didn’t really think much of. But at that moment, it hit me what a special experience this was and what kind of future ramifications this bonding might have.  . For those ten minutes, I was validating and filling up my child’s emotional bank account. I often suffer from SUV envy and wish I could drive, but right then I realized that this was one of the perks of not driving.

So, this little experience got me thinking about other advantages to being a blind parent. Here is a list of a couple I’ve come up with so far.

  • Quality family time–Since we walk places a lot or spend a lot of time waiting for buses, trains, rides, etc., we get a lot of hand holding time and quality talk time. I often tell stories, (their favorites are my “Mary JO Stories” from when I was a kid), teach lessons, answer questions or listen to my kids chatter on about their interests during these times. We also have a lot of fun singing songs and making up our own little ditties. At Christmas time, we often sing carols as we walk places.
    • Great exercise–Since walking is one of our main modes of transportation, this is a no brainer. Keeps you humble–Nothing will keep you humble more than asking others for a ride or having a questionable looking individual whom you’d already pre-judged prove once again to you the importance of not judging others. I can’t count the number of times someone like this has offered me pure kindness by opening a door, or offered to carry a car seat across a street or into a building when I obviously looked like I needed help.
  • Strengthening friendships– We often ride with other families to playgroups or events. This has allowed me to make some great “Mom friends” and usually makes the experience a little more enjoyable since you have someone to go with. It also helps motivate us to go out on hard days when you know you are accountable to someone else. I’ve also become better acquainted with many neighbors and people from my church or work this way.
  • Networking Opportunities–Since we take uber a lot with different drivers or ride public transit, we meet lots of interesting people from different circles and learn about different things. It has greatly expanded our bubble. I’ve learned about new restaurants, local festivals and points of interest, met lots of people from other countries, and learned lots of random facts.   I’ve also been able to share info with others and sort of “give back” by sharing my own experiences. Yes, there are often some crasies on public transit, so I am cautious of what my children see and experience, but this also allows me the opportunity to teach them to be accepting of differences, and Christ-like when it’s hard to do so.

So there is just a quick list of a few advantages. I know there are more and I’d love for those of you reading to share ones you come up with here with me. Thanks for reading.

 

Babies’ Births and Blindness

2016-08-09-19-23-17Well, in the event that you really enjoy reading this blog and have missed posts, I have a really good reason for not posting in a while. WE have been busy with a newborn and in the thick of adjusting to the “new normal” of life with three children, one of whom also started Kindergarten this year–a whole other blog post.  Three months later, I’m finally feeling like I’m starting to come up for air and mastering our “new normal” routine.

We welcomed our third child, Brayden Alexander Hartle on Tuesday, August 9. He weighed in at 9.93 lbs. and was somewhere between 20-23 inches long , beating out his two older sibs by a few ounces–yes, we make really big, but long and skinny babies.  He is quite the little cutie and we’re so happy to have him join our family.

I ended up having a scheduled C-section with him. This was my third C-section. Our first child was brow presenting, instead of crowning, so after about 20 hours of being induced and in labor, her delivery resulted in a C-section. . When our second child came along, he was breech at one point and estimated to be somewhere between nine and ten pounds, so we ruled out a potential “trial of labor after cesarean” due to possible risk for complications because of his size. By the time this little one came around, I pretty much didn’t have any choice but to have another C-section. IN any case, I guess it really doesn’t matter how they get here, just that they do and that they are healthy. We’ve been so blessed each time.

One advantage to knowing when you’re going to deliver is that it allows you to plan a bit better. Since Jesse and I can’t drive, this gives us a little bit of relief to know that the possibility for making a 2 a.m. Uber ride to the hospital is low. I’m sure our friends who are on the emergency call list appreciate it too.

We have delivered all three children at the University Of Maryland Medical Center, in the exact same O.R. even (wish I’d thought to get a picture of myself standing outside the room prior to this last delivery for sentimental purposes. Each experience has been positive. Given that the focus of this blog is on blind parenting issues, I thought I’d take a few minutes to share some related thoughts with respect to our deliveries and our blindness because there is always a little bit of apprehension in the back of our minds about what our experience will be like. Blindness always comes into play in some form or fashion.

Prior to our first child’s birth in 2011, we were pretty nervous about what our experience would be. We’d heard some negative things from blind friends. At that time, there was also a custody case going on in Missouri where a baby had been removed from the custody of her two blind parents shortly after being born, purely on the fact that a hospital social worker expressed some concern about the parents’ abilities. (Just as an added note, at that time here in the state of Maryland, it was also legal for children to be removed from a parents’ custody purely on the basis that the parent was blind with no need for evidence of harm or risk to the child( Since 2011, state legislation has been enacted that prevents this . I wrote a testimonial for a state congressional hearing which you can read here.) Delivering a baby is scary enough without bringing all these other fears into the mix.   So, we tried to be proactive. We spent a bit of time working with our doctor and even spoke to the head nurse of the Labor and delivery unit prior to our daughter’s birth to help dispel some misconceptions and hopefully make our experience a positive one. I am grateful to report that each have been. I think our own ability to advocate for ourselves, our skills training, and demonstration of our abilities have been the prevailing factors in making this so. I also need to give credit to the advocacy of our doctor. We’ve been so blessed to have a great doctor who has followed all three pregnancies and who has become like a part of our family. If you’ll indulge me for a moment, I’d just like to say that finding this doctor has been like an answer to prayers. Bringing a child into the world is such a scary, challenging, exciting, emotional, intimate experience and I’m so grateful that we’ve been able to work with her. She originally started out as just my regular physician about ten years ago, but because she is a family medicine doctor, she’s now become Jesse’s doctor and our pediatrician. She’s also been able to follow all my pregnancies, was present for each birth to support me—even rearranging her schedule just for us–, and she would have delivered each child had I not had C-sections. So we really feel like she knows our family and is our #1 supporter.

Each delivery, we’ve ended up staying in the hospital for an average of about four days (the protocol for a C-section is two or three, but we have stayed longer because our children all had Jaundice . Typically, medical professionals’ views or training when it comes to blindness are more focused on how to correct the problem rather than looking forward to how one would live successfully with it, so this allows us a lot of opportunities to help educate others on the capabilities of blind people. I’ll admit, each time we’ve felt a little bit like we were under a magnifying glass. Despite this, it’s still been a great opportunity for us and felt a bit like a public education mission in that we can demonstrate the capabilities of blind individuals. We’ve been asked a lot of questions about how we do certain things; i.e., how do you get around, how do you change a diaper, how do you keep track of your children, how will you deal with car seats, etc. We’ve been able to share some of our methods and talk about the kind of training available to those with vision loss that helps us with everyday life. We get told that we’re “amazing” or “inspiring” most of the time, which is nice to hear, but truthfully, we just want to help raise public expectations on the abilities of blind people to live normal lives, including having and raising a family.

We did have a bit of an issue this last time with one of our nurses which I want to share. I felt a bit uncomfortable with her because of the way she doubted my abilities by questioning some of my actions. For example, she didn’t want me to pick up the baby from the bassinet because she was afraid I would drop him. Instead, she wanted me to page her to get him. At first, her concern seemed slightly relevant, but I assured her that my husband (who was asleep in the chair next to me) was staying with me and could help with this. She continued to seem uncomfortable with this and I finally realized from her questions that she was concerned about the safety of the baby with both of us being blind, and our ability to locate the baby and the bassinet. I began to feel a bit irritated partly because it was late and I was physically uncomfortable, but mainly because I felt like I had to defend myself to her. I finally had to explain to her that I had enough vision to locate the bassinet and agree to call her if I needed help. I felt annoyed that it took me reassuring her that I had enough vision to see the baby in the bassinet because it felt like throwing my very capable, but practically totally blind husband under the bus. Let me assure you that it’s not too difficult to feel where a large object placed next to your bed is, nor is it hard to locate a crying baby. And if you’re worried about misjudging the placement of the baby back into the bassinet without vision, I can testify that natural instincts will kick in and you won’t release the baby until both of your supporting hands feel a flat surface under the baby…at least in my experience.

We had one or two other little misunderstandings from her and asked our doctor if there was a way to request that she not be assigned as our nurse again. . We’re generally pretty easy going and not confrontational, but she made both Jesse and I feel uncomfortable. Anyway, the story has a happy ending. Towards the end of her shift, she started talking to us and asking us some questions and seemed to begin to change her perception. In fact, the next night she came into our room and told us that she was not assigned to us that evening but wanted to say hi. (We honestly don’t know if this was coincidence or arranged), and she told us that she really appreciated the opportunity to meet us and admired us for what we were doing. It just goes to show you that actions speak louder than words, and that people’s perceptions can be changed.

So, there you have it…a brief glimpse into our birth experiences. We are so grateful for the privilege of being parents. It is honestly the most challenging, sleep-depriving, stressful experience ever, but the most joyous and worth every moment. Thanks for reading.

 

There’s an App for That!

There’s an appp for that…

I remember when the iPhone first came out and smart phones started taking off. I was having lunch with a friend of mine who was trying to explain to me what “apps” were. I was having such a hard time wrapping my brain around why these would be useful to me. Well, boy was I wrong. Like most people, I can’t imagine living without a smart phone and the use of apps. How did we ever manage before? J

This month at our local NFB chapter meeting, we had some member presentations on some of the top apps they use as a blind person. Some of the ones shared were blindness specific, but others were just apps that were useful in some way as a blind person in that they helped provide greater access to something or a useful service. So with that, I’d like to share just a couple of my favorite “blind-friendly” appps that I use on a regular basis.

 

  1. Uber and Lift: Most people are familiar with these services. Basically, they are public ride share services that work like a cab service except the drivers are just independent members within the community who sign up to provide rides and work for Uber or Lift as contractors. It’s probably pretty obvious why I love using these services…since I can’t drive. I still use public transportation in tandem, but these are definitely more convenient and reliable. I love knowing when the ride will come, who my driver will be, and the ability to leave comments and rate the drivers. I use Uber the most as it works the best in our area. I may have to write a post sometime just dedicated to how much I love uber and how we use it on a regular basis since both my husband and I don’t drive.
  2.  Order Up: I think this is a new service that is mainly based in our area, but I know it’s growing and that there are a lot of copycat services. I also heard a rumor that Amazon offers a similar feature in certain areas. Basically, this is an appp that allows you to order food from a number of restaurants in your area, many of which do not provide their own delivery service already. New places are always being added. You can browse the menu, order, give instructions to the restaurant and/or driver, and pay through the app. There is a $5 fee per order, but for us, this is totally worth it, especially if it’s a place that isn’t exactly within walking distance, or easy to get to via transit. It’s so great to be able to have something delivered that is not just pizza or Chinese food. We also like that it offers us options which most people would just drive to and pick up, which isn’t always as easy for us…like those night-time ice cream cravings. They even deliver to our neighborhood pool. 🙂 Some of our Faves to order from are  Dunkin Doughnuts, Cold Stone, Chick-Fil-Et, and Chipotle.   We’ve also ordered from some local places that are great. I highly recommend using it. It’s pretty easy and fast.
  3.  Honeywell Thermostat: This was a device that we bought which is a wireless thermostat you install on your furnace. It was a pretty easy installation too. It’s great to be able to access our heating and air conditioning systems via our phones. Otherwise, the screen on the wall in our home is a flat touch screen which my husband can’t see, and I have to get really close to read (I can’t really read more than the temp either, so programming is not an option.) Through the app, we can program our system to be on or off and it’s also great to regulate it while we are on vacation. The app works great with the voiceover built in on the iphone. I am looking forward to finding and using more appliance-based apps in the future for things like programming our stove, or monitoring home security.
  4. Big Magnify: This is a great tool for the low vision user. Basically, it turns your phone into a small hand-held magnifier (like a portable CCTV for those of you who are familiar with those). . It can provide a pretty strong magnification too. I use this for spot reading like product labels at the store, mail, etc. Just small things that I want to read quickly and when I don’t really need to read the whole thing. ON another note, I have found that I can use this sometimes at venues to see a bit better. For example, Jesse and I went bowling once and couldn’t’ read the score screen. At first, we just figured we would play and then ask the attendant at the end to tell us the score and who won, but then I figured out that I could aim my phone at the screen above the lane (kind of like looking through binoculars) and make out the scores. This is a bit subjective and will depend on a user’s level of vision, but it was exciting. I also watched parts of my daughter’s dance recital this way. I don’t do it all the time because it probably looks a little weird, and sometimes there are just better, more effective techniques that also don’t strain my eyes as much either, but on the other hand, to most, it probably just looks like I’m taking a picture or using my phone to film something.
  5. KNFB Reader: This is a great program for scanning and reading large amounts of text. Basically, you take a picture of something you want to read, i.e. a package label, piece of mail, flyer, etc. And the app converts the text to speech. It’s also really useful for reading pdf’s that you open in a message or download from a website. I used to use the parent product in college (Kurzweil 1000) for scanning textbooks and handouts on a flatbed scanner connected with my computer. The new version with a smart phone is so much faster and easier! I use this now mostly to read long pieces of mail or handouts at meetings. It also has a “continuous scan” mode which I’ve used before to scan a book or manual that I couldn’t get electronically.
  6. National Library Service BARD app: For those of you who are a BARD subscriber, and who enjoy reading like me, this is a great way to browse the catalog easier and it’s nice to be able to download books for free and listen to them on your phone rather than having to download it to another device, especially since I use my phone so often anyway. Voiceover will work with apps like the Kindle and ibooks, but these are human-voice narrated and free to BARD patrons.
  7. Workouts: I don’t know the official name of this app, but this is what it looks like. FullSizeRenderThis is an app we stumbled onto when trying to find some new exercise programs. It’s a mainstream app designed with a variety of videos to serve as your personal trainer through a variety of exercises. You select the kind of exercise you want to do, (i.e. yoga, cardio, spin, weights, etc.) and then it gives you several videos ranging in fitness level or time. The reason I’m listing this one here though is because the videos are really descriptive—that is, there is a narrator describing how to perform the exercise, as well as a written description at the bottom of the page below the video. It’s a great way to use a workout video, especially when you may not be able to see what the person is doing or be familiar with the exercise. Additionally, this is great because the app works fully with voiceover whereas other similar apps have unlabeled buttons or text that voiceover cannot read.
  8. NFB Newsline: This is a service that gives you access to over 200 newspapers and publications. It began as a phone service, but the app is great to organize your favorites and read the paper or various magazines via Wi-Fi rather than using minutes on your phone. You can also email or share items through the app. I like using this service as it is designed for blind people and free. It’s nice to be able to access news via the associated press or some of my favorite papers or magazines without having to pay a subscription fee or try to read them online and navigate through all the online ads and headers. Some of my favorites are the Target weekly circulator, USA Today, the Economist, and Parents. I also like to check in with hometown papers once in a while.

 

So there you have it. These are just some of my favorite “blind-friendly apps.” There are a lot of other “blind specific” apps out there like bar code scanners, color identifiers, money readers, etc. There are also a lot of apps that make accessing sites easier than doing it online such as the Facebook app, Tweetlist (for Twitter), , and bus/rail tracker apps. I’m also a big fan of apps that provide services like Amazon Prime (which speaks for itself and is very popular), or store delivery apps. I’m not a tech expert, but I just thought I’d share some of my favorites that make life a little easier for me. I’d love to hear what yours are. Please feel free to share them in the comments below.

3D Printing Ultrasounds..Wow!

As most of you know, we are expecting our third child in August.  Becoming a mother is one of the most exciting and wonderful experiences.  Each pregnancy is a little bit different and special for me.  Even though we’ve “done this” now a couple of times, each milestone of the pregnancy is still exciting and new–confirming that you are pregnant, hearing the heartbeat for the first time, and getting that first ultrasound.  Even though we don’t really get get much out of the ultrasounds since we can’t see the screen, they are still exciting events.  I wish I’d have had the chance to have an ultrasound like this one somewhere along the way.  This is an incredible use of science and technology  in such a meaningful way.  Everyone should go support Huggies for making this possible too. 🙂

Follow Up to “Memoirs of a Blind Mom”

 

 

I got such a flood of reactions to my post “Memoirs of a Blind Mom.” Nearly all were very positive and encouraging. I did however receive an email from a friend of my expressing great concern for me. Perhaps this post sounded like a cry for help or that I am struggling with some kind of depression. Neither of which are true. So, I will reiterate again that I wrote this post as a way to share something that is hard for me sometimes. While I don’t think we need to always be complaining or focused on how hard things are, I do think it’s helpful sometimes to admit our struggles and weaknesses. It is when we do this that we are able to start the process of learning from them and transforming them into strengths.

I wanted to end that post in a positive way by sharing how blessed I truly am despite some of the struggling feelings I have from time to time, but that wasn’t the purpose of the post. That post was designed to be real and authentic. It felt a little therapeutic to write it all and share it. Glossing over the hard things to share how blessed I am felt a bit to me like devaluing the hard things that I’ve learned from or that push me out of my comfort zone to teach me or humble me.

I’m not amazing or courageous. I’m just trying to do the best I can with what I’ve been dealt. And, if I can inspire or encourage someone along the way, so be it. That is why I shared it.

I truly am so blessed. First, I have a strong relationship with my Savior which gives me strength through the hard times, and provides countless blessings. . Second, I have great family and friends supporting me. I’ve been blessed in so many ways. I’ve been blessed to learn good blindness skills that give me confidence and abilities to problem solve solutions when faced with a challenge. I’ve been blessed with access to resources and technology that make things accessible. I have wonderful friends who call me up out of the blue to offer me rides to run errands or just to invite our family to join them at the park or beach that day without being solicited to do so. I could go on and on. Even though sometimes my blindness is a challenge, I’ve also had some great opportunities and unique learning experiences that I wouldn’t have had otherwise, which make me appreciate my circumstances.

So, for what it’s worth, I wanted to make sure those reading this blog knew that that post wasn’t meant to be a pity party even though it may have sounded that way. It wasn’t meant to be a way of flashing the badge of a marter on my arm for sympathy, nor was it to toot my own horn to announce how “awesome” I am because “my life is so hard.” Thanks again for reading and sending your words of encouragement and support along.

 

Memoirs of a Blind Mom…Sometimes It’s Just Hard

This is another repost from our family site.  I was very reluctant at first to post it there, but as I mention below, I think sometimes there is value in being true to ourselves and not always presenting the “Pinterest Version” to everyone.  I thihnk sometimes being authentic can be really valuable.  So, even though I’m feeling really vulnerable putting this out there, here goes as I hope maybe it will be helpful to someone.  (Originally posted in Fall 2015).

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I wrote this a few weeks ago and then started having second thoughts about posting it. I don’t want to be whiny or complain because I truly have so many blessings. I fear that this will sound like I am doing just that. But then I reconsidered because I think admitting our weaknesses is also important, and perhaps the sharing of my experiences will help another. Plus, sometimes having a good cry makes you just feel better. So with that, I share this post with you.

I had a major meltdown this week. I get frustrated and upset from time to time, but this was pretty out of character for me. I slammed my useless laptop hard with my hand after entertaining a brief but serious thought of throwing it out the back door, began yelling to my husband about my frustrations, stormed up the stairs to my room and flung myself down in a puddle of tears in our rocking chair for a self-imposed time out. Yes, I do have the occasional meltdown from time to time, particularly when I’m feeling especially frustrated, over extended, and over tired, but not like this one. I don’t usually get so upset. I’m a little embarrassed to admit this all now, so why am I writing it and posting it on the Internet for all to see? Good question.

 

On this particular afternoon, I became increasingly frustrated and impatient with a task I was trying to do on the computer. But, like any good parent knows, the meltdown is usually caused by some bigger underlying issue. Yes, I was feeling overwhelmed, and yes, I stayed up too late the night before, but the real issue was much deeper and has been growing for a while now. I was struggling with the computer because I was having difficulty once again accessing a website that was inaccessible for a screen reader. What should have or would have taken someone thirty seconds had been frustrating me for over ten minutes. It was a little thing, but this kind of “little thing” happens all the time. It seemed so unfair! I just wanted to read something really quick, but once again, because I was blind, I couldn’t access it. My anger really didn’t have anything to do with the computer, even though sometimes I joke that my personal “Hell” would be spending an eternity trying to fix them. Instead, it had to do more with the fact that sometimes it’s just hard to be blind and I hate it…yes, I actually just admitted that. Yes, me, Miss Positivity, blind organization chapter president and advocate for all things blindness thinks that. I never admit that, even really to myself. I don’t allow myself to. All my life I’ve been taught to be positive, find the silver lining, count my blessings, make lemons out of lemonade, and just “Pollyanna” up through the hard times. I’m supposed to be strong and not show my weakness, put on a good brave face and soldier on. But frankly, it’s just hard.   It’s something I can’t change and have no control over.

I remember how I went through a bit of a grieving period when I first went blind as a teenager. Over the years I’ve noticed that every time I encounter a new phase of life, I go through another sort of grieving process all over again—turning sixteen and not being able to get my license like my friends, watching my siblings get theirs, moving away to college and worrying how I’d find my way around campus, seeing friends of mine get engaged and wonder if I’d ever get married because after all, who would want to marry and raise a family with a blind girl? Failing an internship at a children’s hospital because I’d walk into hospital rooms to offer child life services to patients only to find I’d just given my shpill to an empty bed, and then wondering what kind of career I’d ever really be able to do? Now as a young mom I find myself going through this process once again, only this time it seems to be hitting me harder than usual.

 

As a mom, I greave now for little things like not being able to hold my child on my lap and read aloud to them. Instead we have to read at my desk with a magnifier, listen to someone else’s interpretation of how a story should be read on an audio book, or worse yet, try to read braille to them and hope they don’t get bored before I finish the first line. I miss that we can’t jump in the car after dark and go for a ride—something my family did all the time while I was growing up, especially at Christmas time to look at lights. I long to be able to take them on bike rides, hikes, camping trips, or or road trips cross country without having to worry about coordinating for a sighted guide or driver to accompany us and working around someone else’s schedule.

I hate that I sometimes dread taking my children for walks around the neighborhood or to the park because I have to be a little “extra vigilant than most parents so as not to lose them. What should be fun and enjoyable often ends up being extremely stressful for me. I constantly worry as I try to keep track of them and often feel quite anxious when they get more than a few feet away from me (out of my visual field) or out of ear shot with their bells on. I often come home with real headaches as result.

I leave playgroups with other moms feeling sad and sometimes embarrassed that I have to take the bus, or cab, or rely on the kindness of others to chauffer us around. I admit that I’ve even been jealous before of moms with their minivans or SUV’s full of properly and permanently installed car seats while I juggle mine on my arms and pray we’ll make it home safely without an anchor strap because I can’t remember all the various ways to properly attach it for every make and model of vehicle in which we may happen to ride on a given day.

 

I cringe every time I let my four-year-old daughter leave the house in a miss-match outfit of her own choosing for fear that others will look at her with pity that her “poor blind mom couldn’t match her clothes” rather than seeing how I’m really allowing her the freedom of self-expression. I fight off nagging fears in the back of my mind when one of my children has a bump or bruise that might be mistaken for negligence because of my “lack of sight and inability to care for them.”

 

It frustrates me sometimes that decisions such as where we live or how many children we will have are governed by blindness. It frustrates me that I worry about what others are thinking when we go out in public as a family. Do they look at our children with pity, or silently label us as irresponsible for bringing children into “our situation?” It frustrates me that I’m often reminded by passengers on the train that I’m carrying a small child on my back and to be careful when I sit down…as if I didn’t notice the extra weight on my back, or that I’ve had someone accuse me of suffocating my child in a front-carrying pack because he was afraid I couldn’t see if my child’s face was covered or not. . Frankly, it’s all a little emotionally exhausting sometimes.

 

So, despite my randtings, I know that deep down I truly am blessed and have so many wonderful things going for me. I could write pages about all the great things I still can enjoy despite my challenge, the blessings I enjoy, the wonderful acts of service that have been shown to us by others, or some of the unique experiences or opportunities I’ve been given because of my blindess, but for now, I just need others to know that it’s hard sometimes. I confess I am weak and occasionally host my own pity party. So for what it’s worth, thanks for listening.