National Cerebral Palsy Day (2018)

October 6 is this year’s National Cerebral Palsy Day. I was born premature weighing just 1 pound 5 ounces and was only 12 inches long. Part of the effect of my early birth is that I have mild Cerebral Palsy.

According to National Institute of Neurological Disorders and stroke, (Cerebral Palsy) “Refers to a group of Neurological disorders that appear in infancy or early childhood and permanently affects the body movement and muscle coordination…” Basically, Cerebral Palsy (CP) is where the brain and body, mainly the muscles, do not connect which can cause a variety of symptoms and effects which can vary from person to person.

While I was looking at the symptoms of Cerebral Palsy, from the same website,  I recognized that I had some of them which was recognized in my childhood.

“Variations in muscle tone, either too stiff or floppy.” For me this meant that my muscles were to floppy and to help make the tone much stronger I received physical therapy from a young age  until the sixth grade.

“Shaking or random involuntary movements” When I stopped and looked at this symptom I actually thought I did not have this until I remembered that sometimes my finger or leg will shake with no known cause.

“Delays in reaching motor skills milestones” For me this was a lot of the thing’s babies do that parents go crazy over sitting up, crawling and walking. My mother told me that it took me two years to learn how to walk instead of one year.

“Problems with drooling and difficulties swallowing or speaking” I had to have speech therapy when I was young. I drooled a lot as a child. Now that I am an adult I do not have that much problems with drooling except for when I am sick or from the effects of wearing my night guard at night.

“Problems with writing and dressing” For me, I struggled with buttons when I was really young, however I had a tool to help me with that. I also struggled with writing. However, with lots of help from physical and occupational therapy I was able to gain my independence with dressing myself and I was able to write. Now that I am older technology has taken over and I type more than I write.

Even though technology has taken over that is not an excuse to not keep my body as strong as it can be. For me, I try to walk as much as I can, I write from time to time, and I bring out the stress ball and play dough.  The most annoying thing about Cerebral Palsy is not feeling as strong as I want to be on my left side, which is mainly in my hand, and very rarely do I have pain in my hand or in my hips or legs. However sometimes I just stop and take a break if it’s from physical writing or to help my hips and legs I do some stretching and taking a warm bath with lavender soaps or bath salts helps me relax. Even though I have these problems that has not stop me from being the best person I can be. I just have to work harder at it. On a sadder note, I saw more effects of Cerebral Palsy that make me feel lucky that I am not as bad off as others with Cerebral Palsy. I hope that one day there will be a cure for this condition and people will have better treatment.

To learn more about Cerebral Palsy:  https://www.ucp.org/ or http://yourcpf.org/

 

 

 

 

 

 

An Interview with Glen Well Eye Never (Guest Blog Post #3)

Hi Everyone, I got the pleasure of interviewing my friend Glen. He is the fantastic blogger and YouTuber who runs Well Eye Never. Many thanks to Glen for allowing me to interview him and for allowing him to interview me in return. Don’t forget to check out his website 🙂

  1. What is your name?
    Glen Turner
  2. Age?
    In a few days time I’ll be 35 years old.
  3. Who has inspired you the most in life and your blogging?
    My parents also have sight loss like myself, and have always encouraged and supported me to achieve whatever I want to do. At the school for the visually impaired I went to, the teachers there were also very supportive and really helped me to grow in confidence. My friends also mean a lot to me and inspire me, of course. And the blogging community has been so welcoming and supportive of my efforts since I started doing this. It’s great to see that so many people want to work together with others, and aren’t just in it for themselves.
  4. Besides writing, what do you like to do in your spare time?
    I like going out and about a lot, to see theatre shows and museum exhibitions, take part in quiz and game nights, go for walks and socialise with my friends. While at home I enjoy listening to a lot of music, podcasts and audiobooks, and watching TV and films.
  5. Name a bad habit that you have?
    Not exercising as much as I should. Walking’s great and important in itself, and I eat well, so I’m not particularly unhealthy. But I would like to get fitter, and I could do with something like a gym buddy to give me the help and motivation to do that.
  6. Name your best quality?
    I’m friendly and kind, I like to help others, and I have a positive attitude to life. There can of course be occasional frustrations because of my disability, but I very rarely get angry or really upset about things, because I don’t like feeling negative.
  7. If you could interview anyone living or dead who would it be and why?
    I could pick loads. But from the music world it would have to be Freddie Mercury, because I’m a huge fan of Queen and Freddie was an amazing man, taken from us far too early. I could talk to him forever about the songs he wrote and performed with the band and in his solo career, and about his early life in Zanzibar and India. He had a great personality and sense of humour, so he wouldn’t be boring. And from TV, I’d love to interview David Jason about his life and work, as I love his comedy shows in particular, especially Only Fools And Horses. He’s such a genuine, down to earth, clever, funny gentleman, so it would be absolutely fascinating to chat to him.
  8. What is your college major/Minor?
    At college I got A-Levels in Maths, Information Technology (i.e. computers) and Economics.
  9. What school (college or university) did you go to?
    I went to the University of Exeter after leaving college, where I got a 2:1 Bachelor of Arts degree with honours in Accounting & Finance.
  10. What is the title of your blog?
    My blog’s called Well Eye Never. It took me a while to think of a name that felt unique, and I wasn’t sure if it would work to begin with. But it’s actually caught on really well and people seem to like the play on words. So I’m very happy with it and have no intention of changing it.
  11. When and why did you start your blog?
    I’d never really used social media much in the past. But when I was preparing to move to London, I started exploring online to see the best accounts I could follow for news and events, and useful ways to make connections with other visually impaired people. That was when I was discovered the disabled blogging community, and the more I explored, the more tempted I was to get involved. So eventually I did, and I’m very glad I did. I’m really enjoying raising awareness of my visual impairment, discussing disability in general, sharing the adventures I have in London, and talking about other stuff that I enjoy, because people have responded so well to it.
  12. Where do you see yourself in five years?
    I’ll be 40 then, wow. I’ll still be in London, still exploring the city and still enjoying myself. I have no plans to leave the city, I love it here, as there’s always so much to see and do. Hopefully I’ll be settled down with a partner by then as well. It’s possible I might look for a new job in that time too, but I’m not sure yet.
  13. What is the name/cause of your visual impairment?
    I have Aniridia, which means I don’t have an iris (the coloured circle around the pupil) in my eye. The iris is a muscle that controls the size of the pupil, to regulate the amount of light coming into your eye. So without it, I cannot easily adjust to changes in light. I do adjust a little bit, but it’s not very much and it happens very slowly. So I’m very sensitive to glare when I go out, even if it’s not sunny, and I find it harder to see in the dark. I also have Nystagmus, which means my eyes shake and wobble involuntarily all the time. So I can’t focus on things that are small or at a distance – they have to be large or close-up instead.
  14. How does your visual impairment affect you on a daily basis?
    I have to wear green tinted sunglasses when I’m out in the daytime, even if it’s not sunny, because they help to reduce the glare a lot. And when I use my computer or iPhone, I invert the colours to have the screen in negative mode. That way, the background is black, so there’s no glare, and the white text on top stands out very clearly Also, when I’m outdoors I can’t see signs, street names, train departure boards, museum object labels, what’s happening on the stage in the theatre, etc. But I get around that by using a small telescope called a monocular, and at the theatre and museums I can get audio description and touch tours too. It can also be hard to find and navigate unfamiliar places, but apps like Citymapper and Google Maps really help there, while other apps like Seeing AI can help me to read things if need be. Technology has really helped me to be more independent, it’s amazing.
  15. What do other people feel about your visual impairment?
    Members of the public often don’t notice it, because I don’t use a cane or a guide dog, as I feel I can see well enough not to need them. But people are generally happy to help if I need to ask them for it. My work colleagues were a bit unsure about how to interact with me when we first met, and were worried about saying anything that might offend me, as they weren’t used to having a visually impaired person around. And they weren’t sure how much I would be able to do in terms of the work. But very quickly, as I settled in and they got to know my personality and capabilities, they realized I was basically just like them and they didn’t need to worry, so they relaxed around me very quickly.
  16. If you had to give one piece of advice to others about having a visual impairment (or other disability that you may have) what would it be?

Don’t assume you can’t do things, because you’re capable of far more than you realise. You can do almost anything that anyone else can, with a bit of help if need be from technology or other people. So don’t be afraid to try new things, take up opportunities and pursue your dreams. It’s entirely possible to live a successful and happy life with sight loss.

Where can other people find you on Social media? (Please list and provide links)

Blog – https://welleyenever.com/

YouTube – https://youtube.com/c/WellEyeNever

Twitter – https://twitter.com/well_eye_never

Facebook – https://www.facebook.com/welleyenever/

Instagram – https://www.instagram.com/welleyenever/

 

Plans Change: Job readiness (independent living skills series 12)

I was an hour and a half early for class. I was eager to do well with my Orientation and Mobility lesson. There was a wild rain storm outside, and I was glad that one of the staff members made my classmates and I coffee and popcorn to munch on while we waited for class to start. However once our teacher came in to tell us about our assigned lessons we found out that Orientation and Mobility was canceled. We were given a choice: either take Job Readiness or Assistive Technology (AT). Since I’m doing fine with my Alexa Echo Dot I decided to stay for Job Readiness. We had two new students joining us, so we first went around the room and introduced ourselves.

Today’s lesson was on how to handle your first day on the job. We talked about the first day jitters, and how no matter if you have sight loss or not everyone gets nervous. The main thing to do is to stay focused on the task that you are to complete. I asked about having a job that you hate, and my teacher’s response was, “eat humble pie.” At this point, his Iphone came on saying, “Sorry, I can’t do that.” The whole class cracked up laughing. His phone continued to act funny by playing music, since he was having problems with getting the music to stop, we joked that he should be taking AT. He finally got his phone to stop by hitting the power button 😊

We continued our lesson with him telling stories about blind and visually impaired people showing hard work ethic and having success. One story that touched me the most was about a blind man and his wife who traveled across The United States.  This thing made me raise a question about family members that are not supportive of your dreams and goals. You see, my dream job is to be able to be a freelance journalist and travel the world. I know to be able to do this I must have thick skin and to be able to have confidence and great travel skills. That is why I am pushing myself so hard with my classes and the volunteer work that I am doing.

Despite my dream, one side of my family wants me to fit the typical stereotype of someone with a visual impairment: Get on disability and stay at home. I refuse to do that. I see myself being independent and happy.

I almost burst out in tears when both my teacher and another classmate said the way to get them to change their minds is to have confidence. That would have a stronger impact then having them attend any “Walk in my Shoes,” program; however I wish they would attend a program like that so they could better understand the training that I have received.

Then we broke for lunch. I ended up having a sweet tea, chicken sandwich with fries from Chick-fil-A.

After lunch my teacher and I did a mock interview in front of my classmates. It was nice for me to get critiqued by my classmates. I did pretty well except for the “why should we hire you?” which is a way for the interviewer to ask for the history of the company. You can also mix in your own personal connection to the company at this time. The other question I struggle with is “why do you want to work here?” this question should be answered by connecting two to three skills that you have with what the employer is looking for, as well as how your career objection fits in with the need of the company.

The last part of the class we looked at examples of cover letters. It was a long day and I was happy to be able to go home and get some rest.

 

Plans Change: Informal Pre-Employment Class (independent living skills series 7)

The van was late. I was anxious; and I was starting to snack on my favorite taco chips and Dr. Pepper. Because I was still upset I called an international friend in England. We chatted up a storm until the van came.

The ride to school was uneventful, and I was only 30 minutes late. When I got there, I put my lunch away and walked into the conference room. I was eager to get started with my Orientation and Mobility lesson. Come to find out, my teacher had to cancel my lesson.

Instead of going home, I asked the instructor if it was okay to stay for the pre-employment lesson. Today’s lesson was on resumes. The first type of resume we covered was functional and how we should use quantity and qualitative examples. We looked at a few examples and discussed why they were good examples.

Once that topic was discussed, we went on to a functional disability statement. I must admit I have a disability statement, however it never covered such topics such as: what my vision is like and what I can see, how I can complete tasks in my daily life such as getting around, cooking and using the computer, and allowing the employer to ask any other questions they may have by opening the conversation yourself.

By that time, I brought up the issue of employers not believing that my eye condition is not real or the fact that I am either drunk or on drugs.

My teacher is right when he says you must have thick skin, and sometimes people are just plain ignorant. He is right; when I get those kinds of interviews, just move on. It only takes one “Yes,” out of the hundreds of “No’s” I have received to achieve success.

Accessibility and the Americans with Disabilities Act (ADA) was our next topic. It is hard for me to believe that someone in human resources would have knowledge about the ADA.  That lead us onto the topic of being able to sell yourself with your assets such as keyboarding skills, how your personal technology works, ect.

The last thing we covered was the format of a chronological resume and some basic interview questions.

On the way home, beneath all the anger I felt about my job seeking journey, I thought about a story that my teacher told about a relative that had come to visit. This relative met one of my teacher’s friends who was blind and he got to learn the impact that my teacher had on this blind friend as a teacher. He gave the man the gift of independence by teaching him. I, myself, want to be as independent as possible. However, first I must figure out what that means to me.

Final Echo Dot Lesson (independent living skills series lesson 5)

This week was an exciting week for me. I am now a proud graduate of the first ever Echo Dot training class. For our final class, my teacher had me disable, and then re-enable his Echo Dot. This will help me once I get my own Echo Dot next week.

Setting it up was simple. I only had to follow the set-up menu via the app. During the set up process, I watched a short tutorial video which included information on the different skills and features (such as playing music via Bluetooth, using Google calendar, ect)

The last thing we did was allow me to explore the different skills. Some of the skills I chose for my Echo included: Weather, Flashlight, TED Talks, Sleep and Relaxation Sounds, CNN, and Meow meow.  What Skills do you use for the Echo Dot if you own one? Tell me in the comments below.

I’m eager to receive my device, customize it, and to start using it.

 

Here are five things I cannot live without (technology edition)

Here are five pieces of technology that I could not live without:

  1. Iphone: I love my Iphone, in fact, I am addicted to it.  I use my phone for just about everything from the built-in magnifier to Siri.
  2. Internet Connection: Without it I could not check my social media sites.
  3. Laptop: When I cannot use my Iphone for something, I use my laptop.
  4. Talking book player: I love to read and having my talking book player allows me to read to my heart’s content.
  5. Essential oils: I love the smell of lavender and peppermint. These scents help me stay calm and relaxed when I’m stressed out.

My talking book player

What would be five pieces of technology that you would pick?