Forward: This blog post has probably been bouncing about my head for months, but it never has made it to print. First of all, I had to think about how to balance emotion with information to even get it out of my brain and into coherent words. Secondly, it is always a balance about sharing our personal struggles with the larger world and this is a big one for my daughter. She is sensitive to her own struggles and that’s something I must respect while trying to educate others. So I ask if you personally know our family not to discuss my daughter’s vision journey with her unless she brings it up first. And so here we go….
There is this children’s book that I fell in love with in college called Millions of Cats. The premise is an old man journeys out in search of the perfect kitten for his wife and himself and on this voyage he encounters trillions of cats. Seeing so many cats he eventually concludes that he knows which is the finest because he has seen hundreds of cats, thousands of cats, millions, and billions and trillions of cats. While I haven’t seen millions and billions and trillions of students who struggle with reading, I have been working with young readers for over twenty years. With all that working with teaching children to read, why did my very own child not fit into any of the categories I had ever seen before? Why was one of the children I knew on the deepest level emotionally, developmentally, educationally, and intellectually such a perplexing case? This child who I gave birth to, this child who was my baby who I just couldn’t get through to.
The case of the 7 Ophthalmologists/Optometrists
It all sort of began at birth, 9 years ago my daughter came out blue which was the first concern, but once the cord was unwrapped she passed the apgar and was deemed healthy. That’s when I noticed the cyst above her eye. After 7 doctor appointments in her first 10 days of life,we had an answer that she had something fairly harmless called a dermoid cyst. This was then removed at CHOP at age 8 months. That took care of the first two ophthalmologists in her life.
How do you know what normal sight is if you have never experienced it?
For the next few years we were eye doctor free. When she was four, she failed a vision screening at school. About the same time, she started to talk to us at home about seeing double. It’s fairly hard for a 4/5 year old child to verbalize what that means and if you have always seen things in singular you really couldn’t begin to imagine what she meant. So we often asked for more information about what she meant and if maybe she was just sometimes crossing her eyes. I did see an eye drift when she was tired, but no eyes crossing and she soon after passed vision screenings with 20/20 vision. Two more ophthalmologist and a helpful optometrist who encouraged her to see a more specialized doctor and a few years later, she was repeatedly diagnosed with basically what many would call a lazy eye in some form. As I had said earlier her eyes would drift out when she was tired. At this point she was released from the intensive care of a vision specialist and I just tucked these 5 doctors away to the back of my mind.
First grade came and went quite successfully and she was developing fine. Second grade began quite the same, but by the end of the grade she really wasn’t where I expected her to be. My son too at this age was a good reader, but not the super reader he quickly turned into in third grade so I gave it a little more time. At this point we had been dealing with explosive at-home behavior following school that I often chalked up to exhaustion from maintaining focus in more idle position. She was a mover so I added a gorilla gym to our house and used that with her regularly to blow off steam. The headaches were the next complaint, but not in a constant way. They only came at night and always after trying to read or following homework with words. Reluctant reader I thought, so I continued to try to find engaging text and she continued to maintain or exceed grade level expectations. That lasted a few more months and then I got this pit in my stomach that just told me something was up and it was my job to use my experience to figure it out.
ADD or dyslexia…. I worked in her school and every time I passed by her room, she was on task, she didn’t forget things, her desk was way neater than mine ever was so I wasn’t sold on ADD as those were some markers I saw in other students in the past. Dyslexia…Well she never struggled to learn her words or sounds as a young reader and she showed phonemic and phonological awareness at an early age. She memorized words quickly and had a large bank of sight words and mostly did well with comprehension. That’s when I took a look into her fluency, I truly started to listen to her read. Her errors weren’t with complex words, but she would skip small words, add or delete ending letters, and substitute words with similar visual shapes for words. Plus she always sounded choppy and she would always need something to track print with. The way she sounded was unlike any of the struggling readers I had ever worked with, it was just very strange. At other times, she would sound perfectly average and normal. At this point she also was showing a preference for books with any form of pictures or large print. So we worked with that and I spent hours reading and searching the internet in search of the answer. I would find something then rule it out. I came upon something called convergence insufficiency and it spoke to me, it felt like her. But here we were now two hours from Chop, Dupont, Wills Eye and I was researching this pretty rarely known about diagnosis (at least in my world) and the more rarely available treatment was only found in one place in my area. So I sat on it until it festered up so much I took the first step and shot off a quick email to a local developmental optometrist about her history. I closed the computer and went to bed. The next day the office called and said based on the information I gave they wanted her to come in.
The wait was a few weeks and the paperwork to fill out was daunting. I almost cancelled ten times, but a friend at work encouraged me to keep the appointment and just rule it out. So that’s what I did. When the two hour evaluation ended, I wasn’t even sure what he would say. I thought maybe he would say I was an overreacting crazy teacher mom inventing something that didn’t exist. But instead he came at me with a list. A list that included convergence insufficiency, visual motor delays, 60% function with depth perception, and high exopheria. We remember that high exopheria ,which means eyes that drift outward, from those last three specialists she saw 3 years ago. It was still there, but now not just when she was tired.
In the appointment she revealed to us for the first time that the words on her pages blur, wiggle, and shake. I wanted to sit there in the corner and cry hundreds of tears, thousands of tears, millions and billions and trillions of tears, because I had spent so much time with my daughter and never once did she mention this to us. Why would she, we remember the double vision that we had basically dismissed? A four month waiting period for in person vision therapy was our best option, but the doctor had a sooner solution with computer based therapy that could be done at home. Sold! The blue and red glasses came that week and she began. Her depth perception improved to 80% within a few months and the doctor was really happy with her progress and she kept working. She kept working until months passed and she was never dismissed when we had told she should be. She kept working every day before school and after school and in addition to homework and sports. She kept working even though the work made her physically ill. She kept working until she didn’t want to work anymore because it wasn’t helping. This isn’t the happy ending you were probably expecting… me either. Instead at home vision therapy turned our house into a battleground and I was the general demanding that she return to war over and over even though defeat was really ever the outcome.
We were six doctors in and though she began to thrive in sports (she could finally see where the other players were in response to her own position) thank you 100% return of depth perception, but the reading wasn’t better. So with the one local doctor tapped out, what could we do? I was busy teaching over 20 students to read in special education and I couldn’t turn my back on them either to run my own third grader around to appointments every week out of the area. Could she really afford to miss school for the appointments? She was still managing pretty well in school and stayed at level. Could I stand a two hour drive one way weekly to get the help she needed and if I didn’t get it could I even live with myself?
Optometrist number 7
There we were at a standstill with the upcoming appointment with the current doctor looming and a daily battle to complete therapy at home. None of it felt right, but again what could I do. Summer was coming up and I thought of making hers the summer of vision with us doing the long drives. It would not hinder my work schedule that way, but she deserved more than that too. So I kept searching for options and one night somehow I came across a site of a doctor only about 40 miles away, no tolls and little traffic. I’d never heard of this practice, but as I watched the video I knew the doctor was exactly on target with all his practices and testing. I decided to stop our current treatment and try a new evaluation. It was amazingly thorough and we were able to sit and talk with the doctors and assistants through the whole two and a half hour testing period.
The doctor prescribed glasses. Overall the testing showed remarkable improvement from doing the dreaded therapy with her scoring above average even in some areas where she previously failed. There were still weaknesses with tracking. Below I will show a visual representation of how her eyes move while she reads.
This first image is a sample of what eyes should be doing, you can see the scoops then the child should do a return to the next line.
This second image was taken with a camera that recorded her eye movements while tracking print at a level significantly below reading below grade level. You can see first of all how a headache would occur, where the choppiness comes from , and lastly why she’d dislike reading.
After a few weeks with the glasses, we returned and she was fitted for contact lenses. Another update showed that the contacts were working well and they were ordered for the year. We check back in a few months and are continuing our therapy break.
While I would like to be ending this saying that we found the issue and resolved it, I can’t give you that happy ending because we aren’t quite there yet and possibly may never be totally there. A day where she grabs a chapter book without pictures and willingly curls up on the couch, a day without an argument to get her to read, a day where reading simply gives her pleasure. Where we are is in a better place, while reading is not quite perfect she is maintaining and she doesn’t see words move any more. She is showing great growth in athletics which helps with her overall confidence. We have an excellent optometrist, who is not pushing us into anything she does not require. So for now we wait and hope that we are giving her the best chance at success. The best chance at making her life easiest. It’s never been about her being top of the class, it is about her being her best self. About coming home and doing homework with out physical symptoms and about not being so frustrated that you have explosive meltdowns every night.
I share this journey for the one person who may read it and say, this is us… I have seen hundreds of children, thousands of children, millions and billions and trillions of children , so I know that each one is so very special to someone.