little four eyes

Many thanks to Sarah who sent in her account of working with a teacher of the visually impaired. – Ann Z

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

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I just received this request from Arlene who is interested in finding ways to make a greater selection of frames available in the UK.  She would love to have any parents in the UK fill out the linked survey.  -Ann Z

I am a mummy of two great children one of whom needed glasses just before her 3rd birthday I was disappointed to discover the lack of choice and availability in Scotland and the UK. Every high street and local opticians have a small selection of children’s frames which are usually less than exciting. Detailed research has uncovered a huge choice of children’s frames spread all over the world, I would like to bring these together in an online shop featuring fun and funky eye wear to make wearing glasses exciting.  My dream is to one day have a high street opticians dedicated to the junior eyewear market. I am currently running a survey to test the market in the UK, I would be very grateful if would take the time to complete this short survey.  Many thanks Arlene Wilson (Rhys and Zoe’s Mummy)

Ingrid wrote me with the following question:

I’m wondering if any parents of children with intermittent exotropia notice that their child constantly closes one eye in sunlight? Of all that we go though with Paris’s eyes, including patching, this for me is the thing that bugs me and bothers me the most. Especially as we live in Australia and it is always sunny!As soon as we walk outdoors she closes her exotropic eye, so she is closing it a large part of the day. I have tried sun glasses but she really doesn’t want to wear them. I am thinking of getting transition lenses? Has anyone got any advice on what to do? Is this something that can be rectified. It is really distressing to see her with one eye closed a good part of the day!

Here’s the thing, Zoe does the same thing, though she has esotropia, not exotropia.  Has anyone else noticed this with their child?  We’ve both asked our POs and not gotten much of an explanation.

This question came in as a comment from Misty on the last post.  Danielle was kind enough to write up a reply.  -Ann Z

Question:
My 26 month old son chews on the rubber nosepads on his metal frames.  I’ve lost count on how many times we’ve had them replaced.  Nothing seems to work.  The tech at the doctor says that he’s going to have to start charging me for them since we’ve cost them a small fortune.  I’ve tried soaking them in vinegar so he doesn’t like the taste and we’ve given him other things to chew on.  Nothing has worked.  Any suggestions.

…

Answer:
No worries, any optician who has dealt with children knows that this happens from time to time. It is just a phase or a new habit. Quite frankly, I know that it is more bothersome for the parent then it is for me. Changing nose pads only takes a few minutes and they cost pennies for me, but as a mom and a dad you have to take the time to come in and deal with the scrapes on your child’s nose because the pads are all chewed up. I know this is frustrating, but there is something you can do
First, let me explain that there are several types of nose pads. Each one is made out of a different material. I’ll list them here from the softest and more comfortable pads to the hardest pads (or we could say from the chewiest to least chewiest)

1. Silicone
2. Silicone with metal insert
3. Vinyl
4. Vinyl with metal insert
5. Solid Plastic
6. Solid Metal

The plan is to start from the top of the list and work your way down until you find the pad that your child doesn’t want to chew on any longer. I guarantee you child will not be able to chew the solid metal ones. I know the temptation is to go right to the solid metal ones, but I have found this is not the best approach. The softer nose pads are more comfortable and as you go down each level you are giving up some on comfort. The last thing we want is your child to not want to wear their glasses because they are uncomfortable. Once your child stops chewing for a couple of weeks the habit will be broken and you can return to the softer pads.

Cyndi Lee left this as a comment this morning about her experiences as a child with a cataract.  She gave me permission to re-post it here.  Many thanks to her for sharing.  -Ann Z

This is my first time writing anything about my cataracts….  I’m now 41, but I was born with a cataract only in my left eye.  My right eye is still 20/20 (God is fair) and as much as I’ve joked to my doctors that they should use me in their thesis, no one takes me seriously.  For one, I know the difference between being legally blind vs 20/20 and I can EXPLAIN to the adult world the cons and pros.  So for those who are in need of some sanity for their child, read on.

A cataract is exactly like seeing objects underwater in a swimming pool.  You see the object and can identity but it’s not crystal clear. I also had a lazy eye – that comes with the territory with most cataract cases in early childhood due to the lack of muscle usage. I’ve had a semi-successful surgery only because I waited too long.  The procedure was not as advanced as it is today to fix the lazy eye syndrome related to cataract, but still I’m so grateful and happy for the surgery.  The early years, I had to wear the “pirate” black eye piece to school which I endured great ridicule from the students and from which I still have nostalgic scars, BUT my strong parental influence and my brother being next to me had made all the difference in the world.  Although in hindsight I would tell a “story” behind the patch, such as “my eye needs rest because I have extra vision like superman”….Something to that line to ease the ridicule…comedy is the best remedy. Encouragement and making sure the eye patch is “fashionable” due to the fact no one else has it makes it special!!  Having a degree in fashion has definitely made me realize that being different is the key!  It’s the love, support and encouragement the family shows that sketches out the future of the child.  My mother still carries the guilt as though she had done terribly wrong during pregnancy but I always tell her I’m blessed as I have a 20/20 vision on my right eye versus the astigmatism my brother has on both eyes.

I underwent a retinal detachment surgery 3 years ago, I went in for a normal checkup and went into the emergency room that night.  The damage was severe but the surgery was very successful. I did lose some sense of depth perception and some peripheral vision but my eyesight improved by one line on the chart which the doctor couldn’t explain.  No one had ever educated or warned me about the retinal detachment that are prone to happen to people with cataracts, so I would advise any parent to always remember to ask during checkup as their child gets older.  I did see flashes during the night while driving and spider web like floating around but thought it was just due to aging.  Don’t be alarmed as I still have a tiny “floater” after the surgery but I received results from two specialized doctors and they said it was fine.

The recovery, was tedious, boring and restless!  One must sleep facing down ( two weeks for me ) my mom and I’ve tried everything until we came up with a solution.  Bought a massage table with the open headrest from Costco and placed a huge mirror under me angled towards the TV so I could at least be entertained and now there’s iPads. The recovery is very important as one can lose their vision if not properly taken care. It is imperative after this surgery to always have a doctor’s visit at least once a year if not twice just to be safe.

Many, many thanks to Melissa for writing this and giving us permission to repost it.   It was originally posted at her blog, The Glovers.  -Ann Z

I believe in Dr. Cogen because he doesn’t sugar coat things & uses lots of analogies. I believe that some of the patches smell weird & I cannot figure out why. It’s usually the green ones, but I like that color because they remind me of garbage trucks. I believe that some people probably think I talk about The Eye too much. Those people must not be moms. I believe that most people are shocked by a 1 year old wearing an eye patch, which is why they stare at us. I forget about it & usually think people are staring because I have dressed him very cute that day, or maybe he is waving at them & they are impressed with his adorable personality. I really do believe this. I believe God knew I was going to have to quit my job to patch my kid & had my mom move here to prevent that. I believe that his glasses are a magnet for dirt, smudges and scratches. “Scratchproof” -ha! I believe that we should get the senior discount at Kroger on Wednesdays because Anderson has a cataract & bifocals. Technically, he qualifies. I believe that nobody who works at Disney has a kid in glasses because if they did there would be more than one character with glasses. And, Little Einsteins is so awful, nobody watches it, so it doesn’t even count. AND, can we please get Jake & the Pirates and Jack Sparrow an eye patch? Really, is it that hard? They’re pirates! I believe in miracles, but the eye success will not be a miracle. No, no, no. It will be a hard won battle. I believe that Anderson is going to be so flexible, adaptable & empathetic in life. I believe that is not a coincidence that my son’s glasses are round, just like like Harry Potter’s. It would have been so easy for JK Rowling to make Harry have perfect vision, but she realized that true heroes always have a weakness, which makes them just a bit stronger. I will forever love her for not taking the normal path & giving the smart one (Hermione) or the nerdy one (Neville) glasses. I believe that this patching business is a routine on the best of days & an inconvenience on the worst of days & never, ever a tragedy, despite my frustrations. I believe so, so much in his little face with the one eye looking back at me.

This question came in from Ingrid, whose daughter Paris is 3, and wears glasses for nearsightedness in one eye, her other eye needs no correction (anisometropia). – Ann Z

I am wanting to ask parents of children with anisometropia whether they find their child particularly clumsy?  It is something that really plays on my mind as it is hard to know whether a certain amount of clumsiness is just part of being a three year old child who does everything at full speed or something more sinister.

Take today for example, I picked Paris up from kindy to hear that she had a bad nose bleed today as she ran full speed into a metal bar in the playground. I could see the remnants of blood in her nose and she had a nasty bruise on the bridge of her nose. Then she collided with another child later in the day.  Immediately I think it is her vision, however my husband always assures me that she is just a busy three year old and our other children did the same. It’s so hard not to worry though. I hate the thought of her misjudging distances due to her anisometropia. She is -4 in her right eye with -2 astigmatism and plano in the left so the difference is significant.  It breaks my heart sometimes.

Thank you so much to Crystal, for sharing her son Grant’s story. You can read more of Crystal’s writing and more about Grant at her blog, Sight Restored. -Ann Z

I could probably make an accurate guess that most of us have heard the story in the Bible where Jesus heals the blind man. I have heard the story a million times, but for the first time ever I have wondered how the blind man’s mother must have felt.

The weekend after our son, Grant, turned 2 months old, my husband and I started noticing this rapid movement with his eyes. We had noticed earlier that he wasn’t focusing that well. Having an older child, we knew that he should already be focusing but we also knew different children develop at different rates. We assumed he was just a late focuser before this point. This weekend was much worse though, and I was worried. He was constantly moving his eyes back and forth…back and forth. On Saturday morning, my husband had to go into work and our older son slept in. I spent a substantial amount of time that morning trying to get Grant to focus in on me. No such luck. My anxiety with the situation was increasing greatly.

We had to go out of town for a wedding that evening, where we met my parents. As my dad was holding him, I decided to confide in my family our concerns. I remember my words (and how crazy I felt saying them) as if it were yesterday. “Dad, I’m afraid Grant might be blind.” You should have seen the looks I got from my family. They had to think I was nuts! They spent the rest of our evening trying to prove to me he was tracking their fingers!

I was not put at ease. Sunday night I was standing over his crib, with his eyes moving everywhere, sobbing, begging him to “look at mama.” I knew something wasn’t right.

We had his two month check up the next morning, and thankfully I convinced my husband he should probably call in to work and go with me. Our pediatrician immediately noticed something was up, and recommended our first step should be to go to an Ophthalmologist. They got us in with a Pediatric Ophthalmologist that afternoon.

I was so scared. All I could do during the three hour break between doctors was hold him. And cry. And pray.

After a quick exam, the Pediatric Ophthalmologist informed us that Grant had cataracts. I felt like I was hit by a Mack Truck. The mother of all Mack Trucks. I lost it. I couldn’t hold it together at all. I kept saying, “So he can’t SEE???” Even though I had thought it all weekend, I realized at that moment that I hadn’t really thought it. He started spitting out things about surgeries, glasses, contacts, lens implant surgeries in the future…. Everything from then on is fuzzy to me. He told us we could walk over to his optical shop and look at the glasses. When I saw the lenses, the tears started flowing again. Those terrible glasses could NOT go on my beautiful baby.

The next nine days were L-O-N-G! I couldn’t get a grasp on what we were dealing with. After all, we had a two year old who had never had a medical issue, much less a vision disorder. I hit the internet. I found a million things on just about every other eye disorder, but barely anything on congenital cataracts.

Nine days after finding out, Grant had the surgery on his right eye. Exactly one week later he had the surgery on the left eye. We have never faced anything so scary. My husband and I couldn’t stand watching them walk away with our baby. Two of the greatest feelings we have ever felt were watching them walk back down the hall with him after both of the surgeries. Especially after the second one. We knew at that point we were finished, and we were getting ready to face a new normal.

Grant after surgery #2

The very next day, well there are no words. I will let this video show you what it felt like to see this angel see for the first time. (Please excuse the strong southern accents you hear!)

We are now a month out from the second surgery. We were able to stop all of the drops except for one yesterday (Hallelujah!!!), and we are pretty use to this new normal with glasses. You want to know the funny thing? I prefer Grant with his glasses now. They really have become a part of who he is. I love them because they give him vision. And let’s just face it. I think we will all agree that there is nothing cuter than a little four eyes!

Many thanks to Melissa for sharing her story about growing up legally blind.  I hope you enjoy it, and find it as helpful as I did.  You can read more of Melissa’s writing at her blog, Wisdom from the Other Side.  - Ann Z

I went through it all as a kid.  I had my first surgery at 18 months to correct my crossed eyes, my second at 5 years to try and correct a nystagmus.  At different points in my childhood I wore glasses, contacts and a patch.  Growing up legally blind never stopped me from pursuing my dreams.  For those moms out there raising legally blind or visually impaired kids, I want you to know that even though your child may have to work a little harder in other areas then sighted kids they are capable of doing anything, and being anything!

I was born legally blind with crossed eyes, cataracts, nystagmus and severely underdeveloped optic nerves.  My vision is only slightly correctable.  I’m nearsighted as all get out.  During eye exams the only thing I can see is the big E which makes my vision un-measurable.  My vision can be corrected up to 20/800 in my good eye, but with glasses I have to give up seeing anything up close for a small amount of distance vision.  A trade off that just isn’t quite worth it when I spend all day in front of a computer.

the author, at age 20 months.

Having been where a lot of your kids are now I want you to know that growing up, I never knew that I had a disability. I never felt different from other kids and I’ve always known that I could do anything I set my mind too.  I knew I had to do things differently than other kids, but what set me apart also made me special.  I can only imagine what it must be like to be a parent raising a legally blind or visually impaired child – but from the point of view of the kid it’s all perfectly normal.  I’ve never been able to read subtitles, or see the chalkboard from the front row.  I’ve always had a pair of glasses or a monocular with me.  My life isn’t any more or less difficult because of my vision, it’s just different.

I spent the entirety of my K-12 education in a regular classroom.  I did the same assignments and was given the same expectations as the other kids, with some modifications as needed; I was also given special Orientation and Mobility (O&M) instruction.  My O&M instructor taught me how to go grocery shopping, read traffic patterns and ride the bus – all the skills I would need to move out and go to college.

I truly believe that part of the reason I’m a successful adult is because of my vision. Not being able to see something was never an excuse for not doing it.  I might have to do things differently than other people, but it still gets done.  I know that I can do anything, and I have.  I earned a Masters degree, I work full time in a position of responsibility and best of all I’m the mother of a wonderful baby boy.  I’ve completely mastered my disability, and I’ve been able to turn it into an asset.

There are a lot of resources available to legally blind children, including tuition assistance for college.  Most states have a Department of Services for the Blind that offers vocational training.  If a legally blind child wants to pursue a vocation that requires a bachelor’s degree, the Department of Services for the Blind will cover part, or all of the tuition.  State departments for the blind also offer orientation and mobility instruction, equipment and a network of individuals in similar circumstances.  They are a wonderful resource!

To any mom who has questions about what did and didn’t work for me growing up, please feel free to e-mail me at Melissa@wisdomfromtheotherside.com.

Cheri wrote this story of her whole family getting involved to help her youngest son, Reid, a young boy with Down syndrome, start wearing glasses last summer. The story was originally published on her blog “Raising Reid” and is reprinted here with her permission.  Thank you for sharing, Cheri! – Ann Z

Well, our newest bump in the road has been that Reid’s eyes have started to drift inward…sometimes more his left and then sometimes more his right, and often both eyes at once. We went to see the eye doctor and we were told he was very farsighted, which is what we were told last time as well…except this time they said now that he is older and his attention is held longer on items and he is focusing more to see things up close his eyes are drifting. To help strengthen those muscles we were told it was time for glasses.

I was not sure how he was going to take to glasses….so we set a plan in motion. While we waited the week for the glasses to come in I sent away for some books on getting glasses. We read and read those books in preparation, we oogled and ogled over anyone and everyone we saw in public or on tv that had glasses, and we bought Luke some frames because Luke is Reid’s hero and if Luke will wear glasses chances are better Reid will follow suit. …actually this was a surprise to Luke, I could tell he secretly wanted glasses so when I went back yesterday to pick up Reid’s glasses I asked if they had any discontinued frames that did not have any prescription in the lenses..and viola they did and now Luke has glasses too.

When I walked out of the office with the glasses I quickly took Reid’s out to see just how strong the prescription was and …honestly my heart suddenly had this very sad feeling. I just sat in my car for a bit with that old familiar feeling of being hit in the gut when you realize your child will have one more struggle. When I looked through those glasses I could barely see anything…geez louise they are strong. The poor thing has been living with incredibly blurred vision all this time and it really made my heart sad.

We decided to “unveil” the glasses as if it was a present. We handed Luke his present first with prior directions to cheer and act excited when he opened his case (which truly he was excited to be getting his own glasses ) and then we handed Reid his….which he opened excitedly with all of us standing near cheering, and then we had Toby put his glasses on that we had to dig out of the archives.

Below are pictures from the big “reveal” of the glasses. Read more…