little four eyes

Melody recently posted this question to the Little Four Eyes facebook group, and I wanted to post it here, too to see if anyone has run into this or has any thoughts or advice for Melody. –Ann Z

Has anybody ever had an issue with their child being terrified to walk after getting glasses? My 2 year old was born premature and had surgery for ROP stage 3 with plus disease. The eye Dr. said the eyes still looked good from the surgery but that my son is severely nearsighted.

The thing is, Nick got around just fine …and rarely fell or bumped into things, but now that he’s wearing his glasses is terrified to walk on the floor….Wood, cement, carpet…it doesn’t matter the texture, he puts his hands down and crouch/creeps around, then gives up and sits and scoots…..Any similar experiences? Thank you!

This is the second part of Dina’s story about her son Will.  Part one introduced her son “Will,” now 8, who was born prematurely and subsequently spent 5 long months in a Newborn ICU.  I asked her to write more about working with the school system to support a legally blind child.  – Ann Z

Will endured numerous surgeries trying to save his vision, and we are buddies with a lot of eye specialists as a result! My family considers ourselves lucky that we succeeded in saving his eyesight in his left eye. Given that Will has only one eye that works, it is essential for him to wear glasses to “protect” that eye. Ever since Will walked, he has worn his glasses every waking moment. Glasses, sunglasses, swim goggles…you name it! His school self-portraits consistently reflect a little boy with glasses.

Will entered the public school system when he turned three. As a result of being born prematurely, he needs extra help in a number of areas, so we have always worked closely with a large school team. Will has a curriculum custom tailored for his special needs (called an “Individualized Education Plan” – or IEP). The creation of his IEP is a team effort, and it outlines every accommodation needed and every specialist that works with him to put him on equal footing with his peers. Will’s IEP includes a classroom teacher and 10 specialists; the document is legally binding and is negotiated annually, with periodic addendums made, as needed. His specialists include many therapists, which are on staff at the local elementary school, including a special ed teacher, physical therapist, speech therapist, and occupational therapist, among a few others. His IEP identifies all specialists required to meet his needs, whether or not they are on staff at the school; there are two specialists brought in regularly because of his low-vision status: a “teacher of the visually impaired” (TVI) and an “orientation and mobility instructor” (O&M).

The TVI works directly with him and provides consultation to the rest of his educational team to help him integrate him into the mainstream school. She helps adapt materials (make sure books and materials have large print, makes sure the library gets books for him, etc), educates the staff on what he can / can’t do (how close he needs to sit to see things, etc) and acquires special tools and devices (like magnifiers, computer programs that blow up text, etc) and works with him and his teachers on using them in the school. Basically, she helps him to learn what other kids without visual impairments are learning.

An O&M instructor’s role is to teach him to use all of his senses so he is able to travel safely from one place to the next, given his low vision. Basically, he qualifies for O&M support since he is legally blind. I have mixed feelings about O&M support because I have learned that O&M philosophy can be “black and white.” When Will first entered the school system his O&M teacher wanted him to use a cane for the blind simply because his test scores resulted in a legally blind classification. However, with one well-functioning eye, he didn’t demonstrate any issue in navigating, so our family didn’t see any need for a cane. We battled this issue with one O&M teacher for a number of years. With our very large IEP, this was the only point of contention and it just simply wouldn’t go away since philosophically, the O&M teacher and our family couldn’t see eye to eye. My family got doctors opinions backing us up, and eventually a lawyer and special ed advocate. Happily, we never needed to go to litigation, as the O&M teacher realized that philosophically we were never going to get on the same page; she decided to transfer my son to another teacher. When we first were transferred to the new teacher, her gut instinct was “he’s legally blind, he should use a cane.” We felt the pit in our stomach of “here we go again.” But once she saw how easily he navigated through the world, she realized that he really doesn’t need one. To be honest, he doesn’t have good vision and I let the school team know that I wouldn’t be opposed to him learning how to use a cane if he needed it “sometime when he was older and alone in a new place” (like on a subway, or in a dark movie theater it’s not the top priority right now. The school agrees with us, his current O&M agrees with us, and most importantly, we can collaborate together to generate an IEP I am extremely happy with.

Will getting his new eye

Sadly, Will hit a major snag last Labor Day weekend; out of the blue he woke up one morning wit his blind eye swollen shut and with severe light sensitivity in his good eye. He got into the doctor a few days later, but it was so swollen they couldn’t examine it. They scheduled an immediate exam under anesthesia to figure out what was going on. There was no clear diagnosis, except to say that sometimes when an eye has been not functioning for many years it has a meltdown, which is what happened to Will. He started experiencing glaucoma and his ducts were clogged, and the swelling was putting pressure on his good eye. There was no alternative but to remove his blind eye and replace it with a prosthetic. It was a psychological hit since we thought we were done with all of the “big eye stuff,” but, Will was a trooper, and our immense school team was supportive through every step. His friends made him cards, the principal welcomed him back, and when Will said he wanted to tell his class why he was wearing a patch, we didn’t quite realize he meant he was going to tell them everything…but he walked into school with his head held high and he shared every last detail, and he became the hero of the second grade. Which is why, in my eyes is his the strongest one pounder ever.

For more about successfully navigating through the school system, practical tips for handling the curve balls that come your way, and topics related to juggling work and life, I welcome you to visit my blog: http://frazzledworkingmom.blogspot.com/

This story comes from Dina, the author of the blog Frazzled Working Mom.  Her older child has since been diagnosed on the autism spectrum and is legally blind; as a result, Dina has become an expert in navigating through the special education system to successfully advocate for him. She’s sharing the story of her son’s vision problems in two parts.  Watch for part 2 coming soon. – Ann Z

I was delighted to be invited as a guest writer this week on the “Little Four Eyes” blog. I write my own blog covering topics about the juggle on managing work and life, and Ann and I met in the blogosphere over our common thread of having a child with glasses. Though my story starts 9 years ago when I easily conceived my first child, and I thought that things were too good to be true. I quickly learned that they were.

After just 5 months and 4 days of being pregnant, my son was born after a 2 hour labor, which the doctors were unable to stop. Weighing about a pound and a half, my son spent five grueling months in the newborn ICU. Like many preemies, he was diagnosed with “Retinopathy of Prematurity” – simply called – ROP. Preemies are at risk of blood vessels in the eye growing “out of control” and causing damage to their retinas. In some extreme cases, retinal detachment can occur.

When my son was two months old (though still many weeks shy of his due date), we enrolled him in a study and he qualified for surgery much earlier than when it was typically called for. The study would “test” out this early treatment, but only in one eye. It was a study we almost opted out of because of his overall precarious health. I will be grateful for the rest of my life that we enrolled him in it, and if given the chance, I would stand up in Times Square and shout my endorsement of clinical studies. My son would be completely blind had he not been enrolled in this study.

The eye that did not qualify for the study (“the control” treatment) ended up having a retinal detachment; he was transferred by ambulance to the only hospital in Boston with a pediatric retinal surgeon for reattachment surgery. Despite close follow-ups, the doctor didn’t call the surgery a failure until several months later, and he gave us a “last resort” to save his vision. We drove a third of the way across the country to go to the #1 ranked pediatric retinal surgeon in the country. A long shot, but our only shot. It didn’t work.

So, the decision to put him in the study was thus far the best decision of my life. And the treatment from the clinical study is now the standard treatment; my son’s doctor told me that there is now a much lower incidence of blindness in pre-term babies because of this. So while my son lost his sight in that eye, he at least helped to save others who followed behind him.

My son is near-sighted in his “good” eye, and he wears glasses every waking moment to protect that eye as well. He wouldn’t be who he is without the glasses. They’ve been a part of him ever since he learned to walk.

He is considered legally blind, which makes life hard in many ways. But at least he can see out of one eye. I know a family from the NICU who didn’t participate in that study, and their child is completely blind. I haven’t talked to them in years, but I think of them frequently.

So while I wish we didn’t go through any of this, and our whole pre-term saga has many other layers to it, it has at least made us all stronger for having been down this windy road.

Read Part II.

You can read more of Dina’s writing at Frazzled Working Mom, which explores topics covering work/life balance and offers tips for handling the chaos in life.