Just a bit of sweetness to brighten your day. All of these were posted today in our facebook group, and are posted here with permission.
- Current understanding of what infants see. An article written by Lea Hyvarinen and others that reviews the current literature to give a great overview of how infants see and how vision develops in the first year of life. Lea Hyvarinen is known, among other things, for developing the Lea symbols (circle, heart, square, house) used to test visual acuity in young children. The article is open access, which means it is freely available.
- Light, Spike, and Sight: the Neuroscience of Vision. This is an online edX course that runs for 4 weeks, starting November 18, 2014. “In this course, we take you from the physics of focusing light onto the retina, to the processing of colors, form, and motion, and finally to the interpretation of visual information in the cortex.” The course can be audited for free. I’ve already registered, and if you’re planning to take the class, please let me know.
In honor of Wobbly Wednesday, I am very pleased that Laura has offered to share her and her son Samuel’s story of congenital nystagmus. - Ann
From Samuel’s very first check up at the doctors at 8 weeks I knew something wasn’t right. Even though he said everything was fine I couldn’t settle. I asked for a second opinion and was referred to the local screening clinic. It took around 6 months from then to finally get a diagnosis.
Samuel never tracked objects, he never acknowledged you when I entered the room, never made eye contact while feeding and those precious first smiles took a long long time to come. He still couldn’t sit up very well at 12 months and has only just started to properly crawl at around 20 months. We cannot wait for him to start walking. But when he does it will be such a special and emotional time.
After attending every baby group I was left wondering why Samuel was so behind all the other babies and felt I always had to make excuses for him. I am sad to say it affected the bond between us I spent all my time worrying about him worrying what was wrong. Looking back I regret this and I wish I cherished every moment.
After many appointments Samuel was finally diagnosed with Nystagmus. Nystagmus is a eye condition which means the eyes constantly and involuntary move. After reading the little information online it took me a while to come to terms with the fact my beautiful little boy is likely to grow up partially sighted. It did explain why things happened a lot later as his vision has taken a lot longer to develop.
Now I realised just how amazing Samuel is he went through a lot of his short life with not seeing very much. His vision is improving and he is developing into such a cheeky chappy. What I would like to tell people is to not get to hung up on the milestones. Don’t worry what other babies are doing and try not to compare. Don’t be afraid to ask for a second opinion if you are not happy with what your doctor has to say. You are the parent and going off your instinct is so important.
We have seen eye specialists, neurologists, paediatricians, ears nose and throat specialists, physiotherapists, visual team and probably some that I have forgotten and that is all before he is even 2 years old. The services we have received have been fantastic and Samuel is even more amazing then I can put into words and everything he has over come just proves what a trooper he is.
We attend the eye hospital every 3 months and they have been so good with him. They can’t tell us much at the moment we won’t know what his vision will be like until he is 6 years old. I am ready to face any hurdles as they come. I will do all that I can to help Samuel develop into a happy and confident child and young man. I’ve promised myself that I won’t project my fears and concerns on him instead guide and encourage him the best I can!
Today, Wednesday, November 5 is the second annual “Wobbly Wednesday“, the international Nystagmus Awareness Day.
What is nystagmus?
Nystagmus is an eye condition that is characterized by rapid, involuntary eye movements. Those movements can be side-to-side, up and down, or rotary. Those eye movements may reduce a person’s vision, and are often associated with other vision conditions. Usually, a person with congenital nystagmus has a “null point”, that is, an angle of gaze, at which the movements are minimized.
Read our guest post by mum, Laura, whose son has nystagmus.
What causes nystagmus?
Nystagmus can be inherited, or can result from other sensory or neurologic problems. It often occurs with childhood cataracts, albinism, optic nerve atropy, and coloboma, though in some cases, there is no known cause for the nystagmus. Accidents, strokes, and other illnesses can also lead to nystagmus later in life (called “aquired nystagmus”).
What are the visual impacts of nystagmus?
Nystagmus is associated with poor visual acuity. It also can take a person longer and more effort to see, than normally-sighted people. Crowded and cluttered scenes can be especially hard to focus on. It can be harder to track moving objects, particularly those that are moving quickly.
How is nystagmus treated?
Sometimes treating the cause of the nystagmus will resolve the nystagmus, but more often it is a permanent condition. While glasses or contact lenses will not correct nystagmus, they sometimes improve vision, and are often worn to treat other associated vision problems.
Where can I get more information?
The Nystagmus Network and American Nystagmus Network have fantastic information for individuals and families that deal with Nystagmus.
Wobbly Wednesday downloads
Please feel free to download this sweet coloring sheet and fact sheet were made by Richard Darani to help raise awareness of nystagmus.
I recently ran across The Smile Challenge: Smile for Glaucoma facebook page. It aims to bring awareness to glaucoma and raise money for the Glaucoma Research Foundation by encouraging people to share photos of their smiles and stories about their experiences with glaucoma. The page is only a few months old, but has already reached hundreds of people around the world. It’s a wonderful, upbeat, and very informative page that is definitely worth checking out.
I’ve gotten to know the founders of the page, Sydney and Shweta, who are as lovely and wonderful as their page. I asked them a few questions about the project, but first I wanted to give their stories:
Shweta was diagnosed with glaucoma when she was 21 and working on her masters degree. She dropped out briefly, while not telling any friends why. She underwent multiple surgeries and was able to go back to school and finish her law degree.
Sydney was diagnosed with congenital cataracts when she was two weeks old. At two months old after a lens removal surgery she was diagnosed with aphakic glaucoma. As an infant she had six surgeries on her eyes. For the first 18 years, her pressures were controlled with drop. But at age 18 her pressure went up to 45 in the left eye and she had an ahmed shunt put into her left eye, and the same procedure on her right eye when the pressure went up to 35. The ahmed shunt in her left eye failed and she had a baerveldt shunt put into that eye. Her pressures have been stable since, however she developed uveitis recently in her left eye. After treatment with drops it thankfully seems to be fading away.
The page has been really inspiring to read and look at, I’m wondering where you got the idea to start the page?
Sydney: A friend in the glaucoma support group saw a post of mine in which I stated I was uncomfortable smiling in pictures. She posted a picture of herself smiling and challenged me to do the same. I challenge others in the group to do it as well and eventually it grew into The Smile Challenge. Shweta saw how big it was getting and created the page.
Shweta: I got this idea from Sydney, she was the one who started a challenge in our Glaucoma Support Group which she named The Smile Challenge. I created a page named Smile for Glaucoma to raise awareness about glaucoma and to raise funds for its research. Glaucoma is not known to many people in India, the lack of knowledge about this disease inspired me to create this page so that others could get to know whats it like to be affected by glaucoma and to let everyone know that there are many disease which do not have a cure and that they are serious in nature. Later Sydney and I teamed up and renamed the page The Smile Challenge: Smile for Glaucoma.
What is your main goal for the page?
Shweta: The first main goal is to create and spread awareness and information about Glaucoma, and we don’t want to do that by just telling people what glaucoma is or what happens after people are diagnosed with glaucoma and such but we want the world to know how glaucoma affects the lives of those suffering from it and inspite of all that, they manage to put up a big smile on their faces. The second main goal is to raise funds for the Glaucoma Research Foundation to help them in bringing the research a little closer to a cure for glaucoma.
Sydney: My main goal for this page is to raise awareness and support for glaucoma. I want people to understand not only what glaucoma is but what it’s like to live with it. My secondary goal is to raise money for an AMAZING organization dedicated to making life easier for glaucoma patients and to funding research for a cure. The Glaucoma Research Foundation is a wonderful foundation that I fully support.
What plans do you have for the page?
Shweta: The page focuses on the lives of people living with glaucoma and their stories about the fight against it, so we just want to keep spreading smiles and stories about the battles of visually impaired and blind community. We are also looking into turning this venture into a non for profit organization someday and hopefully work on raising awareness and funds on a higher level and will continue to share smiles and inspiring stories through the page.
How did the two of you meet?
Shweta: We have been a part of glaucoma support group but never really came across each other. When Sydney started this smile challenge in the support group, I thought of taking that idea to the next level and created this page, Sydney asked me if she could be a part of this and our partnership went on to become an amazing friendship
What would you tell a parent whose child had been diagnosed with glaucoma?
Shweta: Firstly, do not panic, get to know what the disease is all about and how its going to affect the child, ask as many questions to the doctor as you’d like. Be regular on medicines and check ups. And my personal advise to a parent is to be very careful in not letting a child feel that he/she has a disability. I believe no one should put a limit on ones ability, especially a child’s.
Sydney: What I want them to know is low vision or no vision your child can have a bright and independent future. There are many different organizations dedicated to helping those affected by this disease. We are always here to support parents with children diagnosed with glaucoma and they are more than welcome to message our page with any questions they have. If we don’t know the answer we will work hard to help them find it.
What do you want the world to know about glaucoma?
Shweta: Glaucoma is a serious condition in which you start losing your eye sight which once lost can never be regained. Glaucoma is incurable but if someone has glaucoma, their life doesnt stop, it only changes. I urge everyone to be proactive towards their eyes, if you do visit an eye doctor for whatever reasons, get your eye pressures checked as that is one key factor in diagnosis of glaucoma. For precaution, make it a priority to get your eyes examined at least twice a year.
Sydney: I want them to know that we are fighters. We hope for a cure but in the meantime we love and support one another in this journey.
Today is World Sight Day 2014.
World Sight Day is a day of global awareness of vision issues, the call to action for this year is one that’s near to my heart: No More Avoidable Blindness.
I’ve written before about how important it is for children to have their vision checked, and if they have an issue, to have it treated. Untreated vision issues in children can lead to a lifetime of vision difficulties and even blindness. It can affect their academics and their achievement and their quality of life.
I know I’ve shared this infographic before (which has since gotten a face-lift for the Great Glasses Play Day), but I’m sharing it again with some of my thoughts, because it is so relevant to preventing avoidable blindness.
There’s a lot of reasons for this, but they’re all equally upsetting to me:
- The vision problems aren’t caught. Either because the child’s vision hasn’t been checked, or because a vision problem was missed during a screening.
- Even when a vision problem is found, a lot of parents don’t take their child for a follow up appointment with an eye care provider, either because they cannot do so financially, they don’t understand the importance, or they don’t believe their child needs glasses.
- Even when a child is given glasses, many are not wearing them a year later, usually because the glasses have been lost or broken.
I know that I can’t solve all these problems, and thankfully, there are a lot of great groups out there already that are working on these issues. But I do think that we as parents here in the amazing Little Four Eyes community are in a unique position to help.
We’re doing some things already:
- The community here at Little Four Eyes has helped many parents feel better about their child needing glasses, and I hope has inspired at least a few to go ahead and follow up with an eye appointment and getting glasses if they’re needed.
- The annual Great Glasses Play Day each year in May is not just a day to get together to celebrate our kids in glasses, but it’s also a chance to raise awareness of just how important it is to catch and treat vision issues early.
But I know there is more that we can do. I’d love to connect other parents who are interested in spreading awareness with childrens’ librarians and early childhood educators to help get the word out to parents before they take their child to a screening or exam. And I know a lot of you probably have great ideas and connections, and I’d love to hear about them!
- Prevalence of Refractive Error among Preschool Children in an Urban Population: The Baltimore Pediatric Eye Disease Study, 2009, Ophthalmology 116(4): 739–746.e4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680482/
- Lack of follow-up exams after failed school vision screenings: an investigation of contributing factors, Kimel, L., 2006, Journal of School Nursing 22(3):156-162.http://www.thevisioncouncil.org/BVI/media/Research/JournalofSchoolNursingLackofFollowupExamsAfterFailedSchoolVisionScreeningsAnInvestigationofContributingFactors.pdf
- Uncorrected Refractive Error Among First-Grade Students of Different Racial/Ethnic Groups in Southern California: Results a Year After School-Mandated Vision Screening
Kodjebacheva, G. et al., 2011, Journal of Public Health Management & Practice 17(6): 499-505. http://journals.lww.com/jphmp/Abstract/2011/11010/Uncorrected_Refractive_Error_Among_First_Grade.3.aspx
- Global magnitude of visual impairment caused by uncorrected refractive errors in 2004, Resnikoff, S. et al., 2008, Bulletin of the World Health Organization 86(1): 63-70. http://www.scielosp.org/scielo.php?pid=S0042-96862008000100017&script=sci_arttext
- The Social and Economic Impact of Poor Vision, Vision Impact Institute, 2012 https://visionimpactinstitute.org/research/the-social-and-economic-impact-of-poor-vision
Huge thanks to Melissa for sending in this post, which covers one of my favorite topics: self-portraits of kids in glasses. It ran originally on her blog, A Boy, His Brother, the Mischief they Find. - Ann Z
The kid in the green glasses.
Just as it always does, the artwork hanging outside the classroom caught my eye. I began scanning the pictures looking for his name, not noticing the details of the pictures at first. Upon closer reflections, I realized there was a jumbled mess of “the same”-eyes, peachy circles, blobs of hair.
“Maybe he didn’t do one,” I thought. “It must have been a project on a day he wasn’t here.”
My heart skipped a bit at this face.
So many emotions.
That is my kid; The kid in the green glasses is mine.
Every single other picture could be any kid in the class-2 dot eyes, a line of hair, routine kid faces.
But, there is no mistaking those green circles.
“He did a great job, didn’t he?” asked the teacher. “He really captured himself.”
Did she feel what I did?
HE DOESN’T HAVE A PATCH ON IN HIS SELF PORTRAIT.
And, he is very proud to be rocking some awesome green glasses.
This will be framed, in my house, for the rest of my life.
I am so crazily torn up about this picture because I had no inking that we would ever be at the point* where we are now.
*The point=patching vacation, “guaranteed success”, amazing because my kid doesn’t even see the patch as a part of who he is.
Please remember that the first PO we saw flat out said, “He will never be normal” in reference to my baby son. “He will never see well out of his left eye, he will probably not drive & he will always wear incredibly thick lensed glasses that make him look like a bug.” (She did no say the bug part, but she might as well have said it because that is what everyone was thinking) I still shudder at this woman who very clearly was not a mother because WHO SAYS THAT TO SOMEONE??
My fear (beyond the whole blindness thing) was that he would be made fun of, that he would be “the kid in the glasses.”
It turns out I was right.
“That kid in the green glasses is fearless! He would run through a brick wall if he needed to!” was a comment I overheard at a soccer game.
Followed by, “Watch how fast that kid in the green glasses is when he runs.”
And, then there were the comments at t ball.
“You have to be quick when that kid in the glasses is around if you want to get the ball.”
“I think that kid in the glasses is going to get the ball every time.”
I didn’t quite (ever in my wildest dreams) imagine that these would be the “glasses” comments I would hear.
Clearly my kid’s ability to occasionally get the ball at a “game” is not any indicator of his later success as an athlete or scholar or non-nose picker, but it is an indicator that he is beyond amazing for overcoming a significant vision problem, access to only one eye for the majority of his life and, let’s be honest, a neurotic mother.
I am so proud of him.
Last week, The Wall Street Journal ran a fantastic article about having a toddler or baby in glasses. Head on over there and read it if you haven’t already done so. I think it’s a great piece to share with family or friends who have questions about why your child might need glasses, or why that might be a difficult thing.
The journalist, Ellen Byron, spoke with me for quite a bit about my experiences with having a 1 year old in glasses, and also about what I’ve learned from hearing from all of you. She also spoke with quite a few other parents and eye care professionals. There’s an accompanying video and some great pictures, too. Take a look!
Some glasses are blue,
I think your glasses look great on you!
- excerpt from Glasses, a board book
I’m thrilled that Peeps Eyewear and Eye Power Kids Wear are celebrating the recent release of Glasses with a huge rainbow-themed giveaway!
Why rainbows, you ask?
1. The Glasses board book features kids wearing glasses in tons of different shapes and sizes and every color of the rainbow! Here at Peeps, we just love the idea that glasses can help a child express his or her personal style.
2. Rainbows symbolize hope and acceptance. For many young children, glasses are a hard adjustment; they’re a new (and sometimes uncomfortable) thing to wear on your face and many times children don’t know anyone else their age who wears them. “Glasses” shows kids that glasses can be a normal part of childhood, and how glasses can be fun. We think that the moment a child understands that and feels better is like a rainbow after the storm.
3. Rainbows are just plain fun! They’re bright and colorful, and it’s so exciting when you get to see one in the sky. Even Princess Annie loves rainbows!
1 copy of Glasses to keep
1 copy of Glasses to donate to your favorite library, preschool or optical shop
A pair of frames from the Peeps Eyewear Online Store: choose from genuine Miraflex frames in any color of the rainbow OR our Princess Peeps frames
A t-shirt of your choice from Eye Power Kids Wear
How to enter: Use this Rafflecopter to enter. Leave a message in the comment section with these two pieces of information: your favorite color, and the name of the library, preschool, optical shop or organization where you’d like us to donate the book.
Extra credit (just for fun): Share the giveaway on FB, Twitter or Pinterest and tag the library, preschool or optical shop so that they know you’re trying to win a copy for them! We can spread the word that glasses are great, and brighten everyone’s day with pictures of the smiling kids from the book.
Thanks for spreading the word about the wonderful board book, Glasses!
Recently, Zoe had an eye appointment and we heard something we’d never heard before: “come back in a year.” A year?!? Zoe has never in her life gone a full year without an eye appointment (her first was at 9 months old). It’s thrilling and a bit scary all at the same time. Her eye doctor explained that now that she was nearly 8, many of her visual pathways had matured, so the chances of developing amblyopia again are very, very small. Certainly we will bring her in if she’s having trouble seeing, but otherwise, we’ve graduated to yearly eye exams!
It got me thinking of other milestones that you might get to celebrate if you have a young child in glasses, patches, or contacts (not all kids will have all the same milestones, and they won’t all happen in the same order).
- The first day she goes the whole day without taking her glasses off
- The first day he asks for his glasses without prompting
- The first year a pair of frames make it without being broken
- The first year you go without a change in prescription
- That appointment when the doctor says you don’t have to come back for 6 months
- That appointment when the doctor says you don’t have to come back for a year
There’s patching ones, too:
- First day she goes patches for the whole time without complaining
- First week of patching (you all survived!)
- That appointment when the doctor says you can start weaning off the patching
- That appointment when the doctor says you can stop patching
There’s some eye test ones
- First appointment when she was able to use an acuity chart (even if it was with symbols)
- First appointment when he was able to read the chart with letters
- First appointment when she got to do the “which is better, 1 or 2?”
- First appointment when she could get her eye pressure read without doing an EUA
And some for contacts
- First day you got the contacts in without tears
- First day you got the contacts out without tears
- First day she put her contacts in by herself
What other milestones have you hit with your child? And what milestones are you looking forward to?