The Bedtime Tag

I saw this tag on Luke’s Twitter and I wanted to do it too. Before you continue reading my tag be sure to stop by Luke’s blog and give him a like, comment and a follow 😊

  1. What is your usual bedtime routine?

For me, I usually take a warm bath, then I get my PJ’s on, brush my teeth and grab my mouth guard. I get my reusable cup, fill it with water and grab my medicine. I take my medicine. Then I get my dog off the couch and tell him its bed time. He then comes and finds a spot on my bed. I usually call one of my friends from England and we chat until I get sleepy.

  1. What are some of your favorite pajamas to wear to bed?

I usually wear the soft black and gray ones I got for Christmas last year, or if I cannot wear those then I just wear an old shirt and some pajama pants.

  1. What is your current bedtime reading?

I am in a book club with my best friend and I read one of our books that we are reading at the moment.

  1. What would I find on your bedside table?

I do not have a bedside table; however I have a dark wooden desk by my bed. I have a lamp, my talking book player, and then I have a tissue on the shelf that’s on my desk in case I need it in the middle of the night.

  1. What scent makes you sleepy?

I have an aroma therapy diffuser in my room. I love the sent of lavender and it helps me fall asleep.

  1. What is your usual bedtime and wakeup time?

I try to go to bed around 10 to 10:30 p.m. and I usually wake up anywhere from 6 a.m. to 7:30ish a.m.

  1. What are your top three bedtime products?

I love my diffuser that I have in my room. I love my calming body wash that I use when I take a bath before bed. I also love my face wash that I use.

  1. What is your most common sleeping position?

I usually sleep on my left side and hug one of my small pillows. My knees are bent underneath me.

  1. Do you have anything you like to take to bed with you?

I can not go to sleep without my dog, Duke. I also take a big cup of cold water with me.

  1. What is your worst bedtime habit?

I think it’s letting my mind race about what I have to do tomorrow or whatever I have to do in that week. I worry a lot about my life and if I am achieving my dreams and goals.

I hope you have enjoyed this tag, and now I would like to challenge Well Eye Never to do the bedtime tag.

 

The Disabled Bloggers Tag

This Tag was first created by Elin otherwise known as MyBlurredWorld.

Click here to read Elin’s The disabled blogger Tag post

1, When and Why did you start your blog?
I was a Freshmen in college, and we had to set up and keep a blog for the semester. I liked the class because we were able to choose the content of our blogs.
2. Did you intend to talk about your disability online from the beginning?
Yes, because my eye condition is so rare, many people haven’t heard of it.
3. Have you ever been skeptical about talking about your disability online?
No, I haven’t been skeptical about talking about it. I was hoping that this would actually help educate the public on the conditions I have.
4. What kind of response have you/do you receive in terms of your disability related blog posts?
For me its been positive, and a lot of people have came forth to say “Thank You,” because they have one of my conditions themselves and they stated they no longer feel alone.
5. Do you write/Talk about other topics apart from disability?
I’m trying out different topics, and I love learning about what other interests my audience have besides disability related topics.
6. What steps do you take to make your blog accessible to yourself as well as other people?
I love using WordPress, and for me, this has been the easiest platform for me to blog on. I try to make the blog accessible to others by reminding myself of the color scheme and the size and style of font that I use.
7. What is your favorite thing about blogging about your disability?
The fact that I can use this platform to help educate the public about the myths and true facts that surround disability.
8. What are your top three favorite disability related blog posts that you’ve ever published?
My three favorites would be:
1.Call to action: Come help make a big splash for a big impact!

2. Nystagmus Tag (Nystagmus Awareness Day)
3. Jessica and Diesel: the freedom continues
9. Do you think that the disabled blogger/YouTube Community is overlook?
Not really, I think there are a lot of other bloggers and YouTubers that are making a difference to help stop the stigma around disability. However, we still have a long way to go when it comes to continuing to making the facts more positive rather than negative facts known.

10. Do you find it difficult to think of new disability related content to publish?
Sometimes I do. However, I have a lot of great role models out there who are providing great ideas.
11. Do you think that blogging about your disability helps change people’s perceptions?
I think I am, and I’m proud to help shine some positive light on what people with disabilities can do.
12. Who do you Tag?
I would like to Tag the following bloggers to complete the tag:
Well Eye Never (Glen)
Life’s Journey (Jessica)

The Disability Misconceptions Tag

  1. What is your disability and how does it impact you?  Well, actually I have three disabilities. I have Dyslexia which effects my ability to spell, read and sometimes write. Despite this, there are ways that I can achieve success everyday. I had training on how to read, write and spell with my condition when I was in Elementary school. The teacher taught me techniques to help me read, write and spell with confidence. On top of this, I use my Apple Iphone which includes the accommodations of, Siri and voice over. With these accommodations in place, I can write amazingly.   Another disability I have is mild Cerebral Palsy. From the time I was young until I was in middle school I have had countless Physical and Occupational therapy sessions. These sessions helped me gain strong muscles in my hands and legs and confidence.  Now the only time I really have a problem is, on a rare occasion, I get hand cramps from writing too much, or having a hard time opening a jar. Both of these can also be overcome. For my hand cramps I can over come it  by taking a short break, When it comes to opening a jar I can achieve this by using a gripping aid that you can find most anywhere. The most impactful disability would be my low vision, which is caused by a rare eye condition called, Nystagmus. To read more about Nystagmus click the link:  Nystagmus Tag (Nystagmus Awareness Day)   Nystagmus effects me on a daily basis. For me personally, Its like looking through a piece of clear Saran Wrap-So my vision is blurry.  To help me achieve success I use a screen reader, called ZoomText and an accessible print to text reader called Kurzweil 3000. With the use of these items I can achieve anything.  It also impacts my ability to drive. I have to rely on public transportation; and that’s okay, there are many people, like me, who have to travel with the help of public transportation.
  2. What is the most common misconception that you come up against with your disability?

For me I hear all the time, “You don’t look disabled.” this really hurts my feelings when people say this to me. I feel that people don’t understand the condition. The fact is there are a lot of people with Nystagmus who wear glasses, just like I do, and they can achieve amazing things.  Nystagmus effects everyone differently and that’s okay. That’s what makes each of us unique; and gives us all different kinds of strengths and weaknesses that we can work with.

3. What misconception annoys you the most?

I actually have two misconceptions that annoy me: The  first misconception that annoys me the most is hearing, “you’re visually impaired, so you must not able to do…” The fact is people with Nystagmus can do a lot of things, it’s just that we may have to have certain accommodations, such as a screen reader, to help us achieve success.

The second one is, “Oh, you have low vision, you must be on government aid.” The fact is the condition varies from person to person; and not everyone gets government aid, or they may get different forms of government aid.

4. Do you do anything to combat these misconceptions?

I do my best by trying to educate the public on Nystagmus and the kind of help that there is available to people like me. I’m not alone. There are support groups like the Nystagmus Network: Facebook page for the Nystagmus Network and The American Nystagmus Network: Facebook page for The American Nystagmus Network. With the right support, and by educating the public, a lot of the negative misconceptions  that are heard can be bursts like bubbles and the correct facts made available. This can help the disability community shine.

 

Nystagmus Tag (Nystagmus Awareness Day)

Hi Blog world,

 

Happy Nystagmus Awareness Day also known as Wobbly Wednesday. During the early hours of the morning, I came across Glen’s (Well Eye Never) Nystagmus tag. Click here to watch Glen’s Nystagmus Tag YouTube Video

Since I have Nystagmus myself I decided to do the tag.

  1. Are you the only one in your family to have Nystagmus?

I was the only one who has it by birth called (Congenital), however both my grandmothers have a form of Nystagmus called (Acquired).

2. How has your Nystagmus affected you throughout your life so far?

When I was little my mother noticed that I had problems seeing. She took me to see many eye doctors, who said I had Nystagmus, and that I should be fine doing mainstream schoolwork.  However, like most children with Nystagmus, I struggled with seeing my school books and the board. When it became evident that I was struggling in school my eye doctors said I needed to be registered as a student with a visual impairment.

My mother had to fight for many years to get me registered as a student with a visual impairment. In fifth grade I finally started to receive help from a low vision teacher and my school materials in large print.

Now as an adult, the only thing I can’t do is drive. I am currently looking for employment, however with the support I am receiving I should be able to find employment soon.

  1. What are you registered as – partially sighted, severely sight impaired, blind, etc?

All my medical documents state that I have low vision, however I prefer the term visually impaired.

Here in the United states we have the American’s with Disability Act which helps people with disabilities have access of reasonable accommodations to help with employment. I am receiving help through Division of Blind services and Vocational Rehabilitation. The main mission of these services is to help me find employment, and provide me with low vision devices or other services if I need them.

  1. Do you have any other eye conditions with your Nystagmus?

Yes, I do. I have Night blindness, sensitivity to light, lazy eye, and astigmatism. Click here to read more about my journey with Night Blindness

  1. Do you have any visual aids to help you with your condition?

Yes, I use a long white cane during the evenings, during nighttime, or when I am in a new environment. I have several magnifiers i.e. dome, or bar, I also use a screen reader called ZoomText, where I can change the color of the screen, and the tracker or pointer, this program also reads the text on the screen.

Another program I use is called Kurzweil 3000, which is a program when I can access regular print books; and I also use this program to write articles and other writing tasks. A feature I really like about this program is that I can change the color of the background so my eyes aren’t as tired.

One of my most favorite devices I use is my talking book player, with this I can access books through Bookshare.org or through my talking book library.

 

Lastly, I use the speech and Siri feature on my Iphone.

  1. Do you have any advice for parents of children with Nystagmus?

Yes, get them the help they need early. I struggled with school until I received my large print textbooks and that helped me a lot. Also, keep a positive attitude towards the condition. Finally, don’t forget there are support groups out there to help answer any worries or concerns you may have.

American Nystagmus Network Facebook Page

Nystagmus Network Facebook Page

The Nystagmus Family Foundation Facebook Page

7. Describe your vision in 3 words.

Blurry-I describe it as like looking through a piece of Saran Wrap.

Loss of quality of vision during the day-my vision is best during the morning after I get a goodnight’s sleep, then my quality of vision gets worse during the day.

Tired- different things such as change in the weather, or if I’m stressed or ill can make my eyes tired.

8. What help did you get in school/work?

During grades 5-6,  I received large print textbooks and worksheets. Then in sixth grade my family moved to Florida where my teacher of the visually impaired gave me low vision aids, magnifiers, telescopes etc, instead of my large print text to help me be prepared for college and the world of work.  In college, I received most of my books in digital form, which I either converted myself by using Kurzweil 3000 or the disability resource services. I received extra time on tests.

Since for now I am still looking for employment we are not sure which devices I may need, however I know that I will need ZoomText to access the computer.

I hope you enjoyed this tag.

Blog soon,

Amanda Gene