Five things you can do with your visually impaired child this spring

It is now spring, and with that means warmer weather. If you have a visually impaired child you may want to take this opportunity to work on some “blindness” skills. Here are five ideas to help you get started.

  1. If your child likes to fly a kite, have them use their magnifier, and have them use it to read the instructions and put the kite together themselves. (with you supervising this). This will teach them to use their magnifier, how to follow directions, and how to feel good about themselves when it comes to completing something.
  2. This next activity is for children who have a telescope or is in pre-telescope training. This is a fun way to practice using proper prompting technique (which can also be called a holding technique). Which can be used when getting ready to track the kite, or to help stabilize their arm while they are tracking the kite. You can move the kite in different directions and have them follow it with their telescope. (which can help build tracking technique). These two skills are needed in the classroom when children are taking their own notes from the board.
  3. This next activity can be for a younger child who may be working on Orientation and Mobility skills. Have them follow bubbles. For some of these activities you may want to use a larger wand to make bigger bubbles. 😊 If your child can see them well enough. You can blow the bubbles, and while the bubbles are floating have your child follow them. While they are following them, you can work on directions such as up, down, left, right, behind, under, over. If your child is working on compass directions you can blow them, and ask, “If I blow them in this direction, what direction is this?” or “What direction is behind you from where the bubbles are going?” If your child likes to run remember that this can be another good way for them to get some exercise too.
  4. Go for a walk or a bike ride. For biking every child is different. Please do not pick this activity if you do not feel like your child can handle riding a bike. Walking may be a better option. This can help your child get exercise. It can also open up a dialog. You can start talking about options  that they can do if they can’t drive to help them still be mobile and still be independent. This can be a fun activity that the whole family can do.

5.       Finally, you can take some or maybe all of these activities and combine them into a day. Maybe you can even do a scavenger hunt for the supplies for the kite. Have fun!

My Recent Eye Appointment

I did not want to go to the eye doctor; like many times before I was dreading the tests from the “air puff” test and the eye drops. I just dislike the whole process.

As the days got closer to my appointment I was struggling to sleep. So much so that the day before my appointment I only got about four hours. Soon I was sitting in the waiting room, and the tech called my name. I took a deep breath and followed her into the first room. As I sat there in front of the two machines, she examined my glasses, and she asked me about any symptoms I was having. I began to explain about my headaches and how my eyes, when they were tired, were giving me blurry vision; much more than on a typical day for someone who already has a visual impairment. She quickly noted it all down. Then came the dreaded “air puff” Glaucoma test. I was so nervous, and due to my Nystagmus, I was feeling dizzy. Because of this I had to have another tech hold my head still. Puff after puff came and 30 puffs just in my left eye alone, we finally had the answer to what my pressures were for both eyes. The results were worrisome! My pressures were high.

We went into the main exam room.  That is where I had a pretest of reading the chart. The results showed that my vision had indeed changed. The doctor came in and we talked about my symptoms. Because I am a low vision patient, and because the doctor needed to do more tests my eye doctor had to call my caseworker from Division of Blind Services. My caseworker was helping by covering the cost of my appointment with a grant, and do to some paperwork errors I was sent home. I was told that my caseworker or clinic staff would call with my next appointment.

I had to wait two weeks before my next appointment. I had so much anxiety about whether or not I was going to lose the vision that I have. I Googled the condition Glaucoma and learned that if it was caught early that it could be managed with prescription medicines and some other treatment options. The weeks flew by, and once again I was back face to face with the “puff test.” machine. The results this time were about the same as it was the first time with both the “puff test” and the  pre-test.

Luckily this time I was able to explain all my symptoms to my doctor. My eye doctor is very caring and understanding. Testing my vision did not take that long, and it was found that I did, indeed, need new lenses in a stronger prescription.

Then came the dreaded eye drops. When I was little I had a bad reaction to the drops. The day after the exam I would wake up feeling dizzy and with a headache and a nauseous stomach. The doctor decided to try a drop that only had a two-hour effect. The drops stung some, but it didn’t last long. While I waited for the drops to take effect I was able to look at frames. I found a pair I liked and they were ordered.

When it was my turn to go back for the rest of my appointment my eye doctor decided that I needed some pictures taken of the back of my eyes. Getting the pictures did not take that long and it did not hurt unlike it did when I was sixteen.

Then my eye doctor came back into the room and he looked at my eyes with a bright light. So far everything was going fine. The last test was one of the most important reasons for my exam. That was to double-check that I did not have Glaucoma. This last test was called the Slit lamp test. I had to get some numbing drops in my eyes to make the test more comfortable. The doctor used a little probe to check the pressures in my eyes. It did not hurt, it just felt a little uncomfortable. I finally found out that I did not have Glaucoma. I felt relieved with this news. The last thing my doctor did was review the pictures of my eyes. It was so neat looking at my anatomy. Then my doctor answered some last-minute questions that I had.

The results were as good as they are going to get, other than my eye conditions that I already have, I have the best possible vision that I can have.  I am glad that I went for my appointment; not only do I have the best possible vision I can have but I know that this data from my appointment can be used to help medical doctors and scientists understand Nystagmus.

If you have not been to the eye doctor recently, I cannot stress the importance of going for an annual exam. I was lucky that I did not have Glaucoma, but only going every two years, as a visual impaired person is not a good idea. I now am going to make myself a promise and to go each year like my eye doctor has suggested. Please remember to schedule your exam yearly!

By the way, my eye glasses are so stylish!

 

Mid-term reflection: pondering thoughts (independent living skills series 21)

Since it is October and I only have four more months until my scheduled graduation I decided to write a mid-term reflection.

I like my classmates and staff at school. I feel like the school lacks organization when it comes to getting students organized for their assigned lessons.  I wish the teachers would provide class syllabuses to help students keep track on what they are learning.

When I first started school, back in May, I was hesitant to cook and to travel on my own. I had limited knowledge about the Alexa Echo.

I now have a new sense of freedom. I now know how to look up recipes, check spelling of words, do math, get times and keep my shopping and To-Do lists up to date. I use my Alexa daily.

In the kitchen, I am able to cook simple meals and desserts. As well as, use my adaptive equipment to chop fruits and vegetables, check temperatures on a wide variety of meats, and how to confidently place and remove pans from a hot oven. I cook for myself more often, and enjoy new dishes. (Yum, baked eggplant 😊)

When it comes to my travel skills I am no longer afraid to cross streets with heavy traffic, use escalators and elevators and use alternative transportation. I feel like I can travel anywhere I want including traveling abroad. Over these past few months I have learned to have high expectations for myself; all this despite having Nystagmus.  I have positive friends who believe I can achieve my goals and dreams rather than to say I cannot achieve.  On top of all this, I have decided not to listen to the people who say, “No, you cannot you have a cane; or you are visually impaired,” I say to those people, I have confidence and independence now that I have all this training. Getting this confidence and independence did not just happen over night and it came with a lot of work on my part, however I am happy with who I am today.  I know what goals I want to achieve in the future.

Thank you everyone for your support; without you I would have never made it this far. I am looking forward to my graduation.

 

 

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)

#How I See (RNIB’s Campaign)

Hi Blog world,

Last week, on one of the Nystagmus Support groups that I am a member of,  posted YouTube’s Glen’s (Well_eye_never) #How I see campaign YouTube video. This campaign is ran through RNIB.  I really liked Glen’s video and the campaign, and once I saw more people tweeting their #How I See campaign on Twitter, I thought it was time to join in.

When people look at me they don’t realize that I have a visual impairment from Nystagmus. Once people find out that I am visually impaired I explain to them that my vision is like looking through a clear piece of Saran Wrap. For me my vision is best during the morning, and as the day goes on, and the more tired my eyes get the blurrier my vision becomes.

I also have night blindness which makes getting around in low light, during dusk or during the night more difficult. I use a cane when I need it, and it makes getting around easier.

Even though I have these vision problems that doesn’t mean I have to stop doing everyday tasks. I have low vision aids such as a dome magnifier to help me access small print.  I have a talking book player and access to talking books from my local library, as well as, Bookshare.org so I can enjoy audio books of all different  Genres.

As far as, using the computer I use a screen reader called, ZoomText. I like this program because it can speak what’s on the screen to me, and I can also change the color of the screen to make things easier to read. It has different ways of tracking the mouse pointer too, which helps me when my eyes are tired.  I have a speech to text reading and writing program called Kurzweil 3000-this program allows me to read books, and write and edit documents such as my blog. 🙂 It has many different features that makes using the program easy to use-such as, changing the background color, the tracker, and changing the speed at which text is read to me.

All in all, I can say the most important thing I use on a daily basis is my Apple Iphone. I can now text with ease because of the built-in microphone and voice reader. I can also use the magnifier instead of using my dome magnifier.

Lastly, the most important tool I have is great and supportive family and friends, no matter if its face to face or online, they remind me that I am a stronger person despite my disability, and to keep positive no matter what I face as a person with a visual impairment.

To learn more about RNIB  and their #How I See campaign visit their website at: http://www.rnib.org.uk/

To see Glen’s #How I see Campaign video visit his blog at: How I See (RNIB #HowISee Campaign)

Please note, none of these websites have sponsored my post, but please feel free to check out their links.

If you haven’t done so please follow my blog,

blog soon,

Amanda Gene