Glaucoma is a leading cause of blindness, and while older people are more at risk, glaucoma can occur at any age.  Pediatric or Childhood Glaucoma may be congenital (1 in 10,000 babies in the US are born with glaucoma) or may develop later in childhood.  Glaucoma is also closely associated with cataracts, children who have cataract surgery are at higher risk of developing glaucoma, and so are often closely monitored.  Some symptoms of childhood glaucoma include light sensitivity (photophobia), corneal opacification (hazy gray cornea), enlarged eye and cornea, epiphora (overflow of tears), and vision loss. (Information is from the Pediatric Glaucoma and Cataract Family Association, and the Glaucoma Research Foundation).

You can find more information about pediatric glaucoma and support support for those dealing with it here:

• Congenital Glaucoma Network - this is a social network for all people affected by childhood glaucoma come to share their story.  There is a forum, blogs, a place to share photos, videos, and links to more resources.
• Pediatric Glaucoma – information on pediatric glaucoma from the Pediatric Cataracts & Glaucoma Family Association.  You may also want to check their Knowledgebase for more articles on glaucoma.
• Children’s Glaucoma Foundation – a non-profit dedicated to supporting children with glaucoma.
• Childhood Glaucoma – symptoms, treatment options, and stories about childhood glaucoma.  From the Glaucoma Research Foundation.

You can also read other posts on Little Four Eyes that deal with glaucoma.

If I’m missing anything, please let me know!

My nearly four-year-old daughter Isabella has multiple ocular diagnoses: severe hyperopia (farsightedness), astigmatism, mild macular hypoplasia (“underdevelopment of the macula, a small area on the retina responsible for seeing in detail” – read more) , latent nystagmus (“involuntary rapid movement of the eyeball, occurring only when one eye is covered” – read more), and intermittent exotropia (“eyes that turn outward” -  read more).  She began seeing an ophthalmologist at six weeks old and received her first pair of glasses at 15 months. Today at nearly age four, her acuity measures about 20/70 with correction. Isabella also has bilateral sensorineural hearing loss, childhood apraxia of speech (a motor speech disorder),  hypotonia (low muscle tone), and fine and gross motor delays.

Isabella

Isabella’s functional use of her vision has always been puzzling. As an infant and toddler, she could not seem to make eye contact, despite being otherwise a social child. She did not use a visually guided reach. Instead, she would glance at an object, look away, and then pick it up, feeling for its exact location. When she began walking, she was hesitant to let go of my hand and always stayed by my side. She avoided nearly all fine motor tasks, preferring interactive pretend play with her favorite stuffed animal Curious George and me.

In general, looking appears to be hard work for Isabella. She descends stairs without so much as glancing down at the location of the next step unless reminded repeatedly. She seems to navigate our entire home based on memory instead of sight. She frequently completes tasks such as getting dressed without looking. Her depth perception is poor. She prefers the familiar. When engaged in other demanding activities such as speech, Isabella sometimes takes visual breaks and looks off into space. Her visual performance is inconsistent; she is able to perform a task one day and not the next. She fatigues easily when engaged in the visual. Working on vision in a noisy environment is all but impossible. She is a master at avoiding activities that she finds challenging.

Thus far, Isabella does not have an overarching visual diagnosis that would fully explain her functional use of vision. Some have called it a delay in visual processing, and others suggest that she has some of the characteristics of cortical visual impairment. Perhaps some combination of neurological factors and her ocular diagnoses account for it. Perhaps it does not matter.

Isabella began seeing a teacher of the visually impaired (TVI) at 2 years and 8 months when I finally found someone—her  physical therapist—who took my concerns about her use of vision seriously. At her assessment performed through Early Intervention and paid for by the county, the TVI administered the following evaluations: Functional Vision Screening Checklist, Oregon Project for Visually Impaired Children, and Developmental Inventory of Visual Efficiency (DIVE). The results showed delays in visual efficiency and qualified Isabella for services twice per week.

Isabella’s TVI began to work with her at our home on a variety of skills, e.g., scanning from left to right, puzzles, searching for items in a cluttered picture, patterns, discriminating same and different, sorting, and matching. These sessions were very challenging for Isabella, since she had never had to focus so much on visual tasks.

Slowly we began to see some progress. First Isabella began to handle visual clutter more effectively. She started to scan more effectively to locate objects in busy pictures. She learned to do and even enjoy the simplest  inset puzzles and soon advanced to three and four-piece ones. A year later, she can complete a twelve-piece puzzle with limited assistance and eagerly tries new puzzles. She grasped the idea of patterns and discriminated between same and different. She could identify and name all her uppercase and most lowercase letters as well as numbers from 1-10. She could recognize multiple words in print such as her own name and those of her classmates and family members.

This summer Isabella reached the end of the road with her first TVI. He had approached his sessions seriously, almost academically, which became too much for our creative preschooler. He and Isabella were no longer a good match. Isabella’s performance during sessions tanked, and progress stagnated. After a few months of agonizing over this decision, we chose to seek a new TVI.

Isabella is again progressing with her new TVI, who has a much more playful approach. With a background in special education as well as vision, she has managed to incorporate pretend play, snacks, reading, and even breaks such as swinging into her sessions to maximize Isabella’s attention and motivation. Vision is now fun for Isabella rather than purely work.

Our new TVI has also suggested simple, yet revolutionary changes to Isabella’s environment to maximize visual performance. For example, Isabella now sits with her back to the window in our kitchen to minimize glare. We use a black cloth draped over the table for all close work to help Isabella see better and minimize visual fatigue. This new teacher has also visited Isabella at school, and we are working to integrate these and other accommodations into her school environment.

Since the start of vision services more than a year ago, I have observed a significant change in Isabella’s use of her vision. However, her work is far from over. Isabella still displays significant delays in visual efficiency, and her vision is far from typical. As she grows older and enters school, demands will only increase; visual tasks will only become more complex. We will persevere, providing her with appropriate accommodations and services for her education as well as presenting her with as many opportunities to use and improve her vision as we can in her daily life at home. I am certain that she will continue to amaze us with her progress.

Other links of interest about Braille:

• Reading to your blind child – from the Louis Braille school
• Braille resources for parents – from the American Foundation for the Blind
• More about Braille Literacy Month and the low rates of Braille literacy among the blind and visually impaired – from Lighthouse for the Blind and Visually Impaired

More

Books

Books would be my first place to start (but I’m a librarian, so of course they’re my go to resource).  Most books on our list are written from the perspective of the child who needs glasses, but some also follow friends or family members of kids who get glasses.  One person has already recommended Magenta Gets Glasses! by Deborah Reber, a Blues Clues book.

Shows

I’ve written before about some kids’ TV shows with characters who wear glasses.  Depending on the age of the siblings, the Yo Gabba Gabba episode from season 2 called Differences tells the story of Muno getting glasses, and his friends reacting to that.  I didn’t like that at the end Muno wears contacts (because I had hoped that he’d become a character who regularly wore glasses), but I think it talked a lot about other people’s reactions to seeing someone in glasses for the first time.  Sid the Science Kid also has an episode called Grandma’s Glasses in which Sid learns about vision and why some people need glasses.

Websites

There are a whole lot of websites aimed at kids that explain how the eye works (my favorites are from the Exploratorium – warning, it contains graphic images of a cow eye dissection, and the National Eye Institute), but not nearly as many that talk about glasses. Here’s a few:

• Whyzz - a site that helps kids explore questions, it provides not just answers, but also experiments to help learn more, and links to more information.  I’d start here.
• Annie’s Unite for Sight website for kids - a dog named Annie, who wears glasses, explains how the eye works, amblyopia, strabismus, as well as other vision issues.
• Kid’s Health has sections about eyes and glasses.

So what other resources are there?  Have you had to prepare an older sibling for their younger brother or sister getting glasses?  Any words of wisdom?

The page is a work in progress.  As I hear about or stumble upon other blogs, I’ll add them.  And I’d love to hear from you if you have a blog that you’d like to have listed, or if you know of a blog that belongs on the list.  The only requirement is that the blog have some posts that related to having a child in glasses or children’s vision issues.  The list includes both personal blogs, generally written by parents, and professional blogs, written by eye care professionals or others in the industry.

I had originally written a short blurb for each blog, but the prospect of writing a blurb for each on is a bit daunting, so I’m going to settle for listing the vision topics covered in the blog (eg. amblyopia, cataracts, or optometrist).

Check it out!

My son, Easton was born with a severely cloudy Cataract in his left eye.  At 3 weeks old he had surgery to remove the Cataract and his Lens.  It was after the surgery that we then discovered the Cataract was just a symptom of his overall abnormal eye.  He was diagnosed with Persistent Fetal Vasculature.  Along with abnormal eye structures and a cataract, his eye also is at very high risk of reoccurring Glaucoma for the rest of his life.  In order to maintain function and attempt to restore vision in his eye,  he has been wearing a contact lens since healing from the surgery and wears a patch over his “good” eye approximately half of his wake time, 6 hours.  He is currently 15 months old and it most definitely has been quite a journey getting to this point.  We recently found out that his Glaucoma has flared up and are in the middle of a battle with it right now.  Reading the blogs of other parents in similar situations is so comforting to me.  As a result I began blogging our journey approximately 6 months ago and it has helped immensely just to get it all out.  As this New Year begins I wanted to share one of my most popular posts as a way of reaching out and giving back to a community who has given so much to me.

This post was actually written Sunday, October 16, 2011… but it still rings true for me everyday.

Dear Easton…

My baby
My boy
I love you
so much
beyond what words
can express.

You are fearless.
You are full.
You are endless.
You are endearing.

You can do this.
There are so many days
when you make it
look easy.

But I know
you know
that there is a
harsh
cold
reality
to the days
that arn’t easy.

Every morning
Every moment
starts
and ends
with
the eye.

The eye
that can see
that is covered up
that wears a sticker
that bends your eyelashes down
that irritates
that itches
that rips your skin when removed,
that eye
is precious.

The eye
that can’t see
that is pulled open
that is poked
that is rubbed
that is wearing a contact
that is learning
that is growing,
that eye
is seeing.

I am sorry.
I am so sorry.
That you have to
endure.

I am sorry.
I am so sorry.
That nothing about this
is easy.

I am sorry.
I am so sorry.
That your vision
comes with a price.

But Baby.
My sweet
loving
lauging
little boy,
Mommy loves
you.

I love you
so much
that I will do this
for you.

I will continue
to wake up
everyday
and do this
for you.

Balance
Strength
Endurance

Easton,
Mommy is doing
the best she can.
I am trying.
I am sorry, baby.
I love you.

And when we have
bad days
you have to know this,
I do this
because
I love you.

Someday
we will look back
and I pray
all this is worth it.
Because you deserve
a chance
at the very least
you deserve
a chance
to have the best
possible
vision.

I love you.
I am so proud
of you.
Keep seeing the distance baby.
See the Distance.

“I am attaching a picture of my daughter, SALENA, age 8 years, who got her glasses when she was about 6 years old for farsightedness and astigmatism. She has been very good with her glasses always and has never broken one.  It has only been recently that she has started getting upset about wearing glasses as the kdis in her class are teasing her.  Her pet quote: ‘I look cute with glasses but pretty without them.’

I live in Pakistan and am a doctor. My husband wears glasses but my elder daughter and I , we do not.

I am hoping that seeing her picture in your photo gallery will remind my daughter how precious she is and that she is beautiful no matter what…:-)) I plan to go through the photo gallery with her and surprise her when she sees her own picture with the rest of the wonderful children.

She is a great dancer and usually called the “rockstar” of any show that she participates in.  She is the first one to start dancing and the last to sit down.  She wants to be a fashion designer, scientist and Barbie when she grows up!”

Salena sounds amazing, and it breaks my heart that she’s upset about her glasses and dealing with teasing at school.  And this echoes one of my fears, that Zoe will also one day start to think that she’s not pretty in her glasses.  So I’m asking all of you who read this, can you leave a note letting Salena know just how beautiful she is?

Squint

The one that trips me up the most is the word “squint.”  Until we started our journey with Zoe’s strabismus, I always thought squint meant having your eyes mostly closed, like you do when you’re in bright sunlight.  Turns out that squint is also a synonym for strabismus and having your eyes not in alignment.  This can lead to all sorts of misunderstandings when people talk about their child having a squint, or squinting to see something.  For instance, before realizing there were two definitions, at one of Zoe’s eye appointments, I tried bringing up the fact that Zoe squints one eye in the sun, that is, she closes one eye most of the way, leaving the other open.  Zoe’s ophthalomologist thought I meant that Zoe was crossing an eye whenever she was outside.  I now try to avoid this word altogether.

Zoe exhibiting two different "squints": eyes not aligned (left), and looking through eyes mostly closed (right)

Lazy Eye

The phrase “lazy eye” is similar in that it can mean different things to different people.  I think most people in the eye care industry consider lazy eye to be a common phrase for amblyopia – when one or both eyes doesn’t see clearly even if it has no defects, or even if any refractive error is corrected with glasses or lenses.  Never mind that “lazy eye” doesn’t really accurately reflect what’s happening with amblyopia, since it has nothing to do with an eye being “lazy” and everything to do with the brain not paying attention to the visual input of the eye.  But beyond that complaint, a lot of people hear “lazy eye” and equate it with strabismus, since you see one eye focusing on an object and the other eye looking elsewhere (being lazy?).  And I’ve heard other people refer to ptosis (drooping of the upper eyelid) as a lazy eye, again, presumably because the droopy eye looks “lazier”.   Further confusing things is the fact that both of those conditions can lead to lazy eye or amblyopia, but they’re not the same thing, and the treatments can be very different.

patching for amblyopia

Strengthening the weak eye

Related to treating lazy eye is the phrase that I find myself using a lot: “strengthening the weak eye”.  When a child patches the amblyopic eye, we often explain that they’re doing it to strengthen that eye.   In reality, though, we’re trying to get the brain to recognize the visual input from that eye, the eye itself isn’t being strengthened.  It’s misleading in a couple of ways.  First, when people hear “strengthen” they often think muscles, and I wonder if that adds to the confusion of thinking that lazy eye has to do with eye muscles and strabismus.  It can also lead to the misunderstanding that patching might make it so that the eye won’t need any correction any more if the patching is successful.  While patching can improve the visual acuity, if that eye needs glasses to see clearly, patching won’t fix that.

and on a much lighter note

Finally, on a lighter note, a reason to know the correct terminology for parts of glasses was posted over at Not Always Right (a blog about working with customers who aren’t always right).  I’d recommend using the term “temples” or “ear pieces” when talking about that part of glasses, not “legs”.

• Make a glasses case: Amomofelly pinned this link to instructions for making a simple glasses case that can be decorated however you or your child chooses.
• Turn old glasses frames into picture frames: I found these instructions a long time ago. I think it’s an interesting I idea, though with kids’ glasses, the pictures would be so small.
• Patches: There’s a ton of instructions for making your own patches to go over your child’s glasses, and the great thing is that they can be decorated to fit your child’s personality and likes. The big thing to be sure of is that the patch provides complete occlusion, and your child can’t peek. Here’s a couple tutorials, you can also google for eye patch tutorials or eye patch patterns:
• Using craft foam – pattern developed by Amomofelly and posted here a year ago.
• Using felt – from Lucykate Crafts

Anyone made any of these and want to share a picture?  Or have any other glasses-related crafts to share?