Our son, Brady, was unexpectedly born blind in 2016.
We were scared when he was born. We didn't know anyone who was blind. We had no idea how to raise a blind child. We didn't know how he would read, make friends, or go to school. We didn't know if he could live alone. We just didn't know what his life would look like.
Brady has taught us a lot in the last six years. He is in a mainstream school and thriving. He has friends and is incredibly social. He uses a white cane to navigate the world and is learning how to read Braille.
Because only about 3% of children under 18 are blind or visually impaired, it has not always been easy to find other families like ours.
Here are some questions we get asked and some things I wish we had known when we started this journey:
What causes blindness in children?
There are multiple causes of blindness in children. They can include congenital cataracts, retinopathy of prematurity (ROP), and many others. In our son's case, he was diagnosed with Peter's Anomaly.
What is Peter's Anomaly?
Peter's Anomaly is a rare congenital eye disorder that causes problems in the front part of the eye, including clouding of the cornea, which is the clear area of the eye. It can occur in one or both eyes and with varying degrees of severity. In Brady's case, both of his corneas were severely affected.
Does Peter's Anomaly cause any other problems?
Anecdotally, we have met several other children with Peter's Anomaly who experience a range of other genetic or developmental issues, including heart problems and issues with mobility or speech. In Brady's case, he also has some low muscle tone. We do not know if that's related in any way to his eye condition. While his muscle tone issues make him more tired than his peers, it is not a significant problem in his life.
What caused Brady's Peter's Anomaly?
We don't know for sure. We had some genetic testing done and it was inconclusive.
When is someone considered legally blind?
In the United States, someone is considered legally blind if their vision is 20/200 or less.
Does being blind mean that you can't see anything?
Not necessarily. Like autism, blindness occurs along a spectrum. Some people are totally blind with no light perception. Other folks can see light and maybe some shapes, but nothing else. Still others can see things, but not well or not far away. In Brady's case, we believe he can no longer see anything out of his left eye (he had a retinal detachment years ago), but he has some limited vision out of his right eye. He can see lights, some colors very close up, etc.
Have you considered surgery for Brady?
Brady has had over 30 eye surgeries or examinations under anesthesia (EUAs) since he was born. As an infant, he had artificial corneas implanted in both eyes (kPros). They worked very well for 18 months or so and then we began to have complications. For a couple of years, we tried desperately to keep the kPros and retain Brady's vision, which was actually pretty good at that point. However, despite multiple surgeries to try to keep his corneas, ultimately, we needed to remove them.
Were there any other options for him?
The only option left was to put Brady on immunosuppressants and see whether those helped let his body keep the corneas without complications. We consulted with multiple doctors to assess whether this was a good path for us. At the time, immunosuppressants had never been attempted in a pediatric case like Brady's, so no one had any idea if it would work--it was all hypothetical. If it did work, Brady would retain his corneas and more vision, but he would be on immunosuppressants for an unknown period of time that would expose him to other possible problems, including more serious illnesses. Since Brady was otherwise healthy, we did not want to jeopardize his health just to *maybe* give him sight, so we declined the immunosuppressants.
Will Brady ever be able to see more?
Brady may have the option of trying more surgical interventions in the future, if that's what he chooses. But for now, his surgeon and us have decided that the best course of action is to do nothing. We want to preserve the sight that Brady does have and since he's adjusting so well, putting him through more surgeries doesn't seem worth it.
Were you sad when you learned that Brady was blind?
Yes. At first, when Brady was first born, learning he was blind felt like a death. We grieved, tremendously. I remember laying in my dark bedroom, crying my eyes out. We were also terrified because we didn't understand blindness. We did everything visually, so we couldn't imagine functioning in the world without sight.
Are you still sad?
Almost never. Every once in a while, I will see a fully sighted little boy running wild through some brand-new playground and get a little sad that Brady can't do that, that he has to be a little more cautious. But for the vast majority of the time, it doesn't make me sad. Brady is just Brady and he's an amazing kid. And around our house and school, he navigates so well that no one would know he was blind, so it's easy to forget.
How did you stop being sad about Brady's blindness?
I educated myself. My sadness and fear were rooted in my own ignorance about blindness. Because I didn't know how to function as a blind person, I was scared of it. When I finished crying about Brady's diagnosis, I began educating myself. I started reading about blind lawyers, blind judges, blind artists, blind athletes, blind teachers, blind professors, and blind advocates. I watched videos of blind athletes playing soccer or skiing downhill. I read about a blind judge
who was appointed to the Michigan Supreme Court and who had participated in dozens of marathons. I read about a blind scientist who won the MacArthur award (e.g. the "genius grant"). That professor, Geerat Vermeij, who had been blind since age 3, said: "Blindness is a nuisance that can be largely overcome. It is not a disaster. It is not to be pitied or revered. It is just a condition that has to be dealt with as you get on with life."
I must have read that quote from Professor Vermeij a hundred times when Brady was an infant. It taught me that what had originally felt like a huge, earth-shattering deal was, in fact, "just" a small thing to adjust to as we lived our lives. And knowing that these blind people had become judges who ran marathons and professors who traveled the world showed me that blindness was, in fact, no big deal. Once I knew that these things were POSSIBLE, I knew that all I had to do was find the tools to get there.
And so, I stopped grieving and began getting on with life.
Is Brady sad that he's blind?
Every once in a while, Brady will say that he doesn't like Braille or his white cane or being blind, but that's pretty rare. What does make him a little sad is how few blind people are around, including on TV or in books. One night, I was reading Harry Potter to the kids and Brady suddenly asked me, "Mommy, which one of the characters in Harry Potter is blind?" When I told him none of them were blind, he got really sad. I asked him if he wanted me to find a book with a blind character and he said yes. He wants to see himself represented him TV and books and movies.
Have you seen the "This Is Us" episodes with Jack, the blind son of Kate and Toby?
Ummm.... yes!!! And I've cried like a baby during every episode that Jack (either young or grown up) has appeared in!
I immediately downloaded "Memorized" (the song that adult Jack sings on the show to a sold-out crowd) and played it non-stop for Brady, telling him that a blind singer sang this song. Brady LOVED it!
Do you refer to Brady as blind or legally blind?
We usually use the term blind, in part because it was easier for Brady to say when he was younger.
How do you talk to Brady about blindness?
We are very open about it in our house. We use the term blind regularly. We encourage Braille reading and talk about how fun it is. We practice talking about what to say if other kids ask Brady why his eyes look different and how to stand up for himself if other kids are mean to him because of his vision. Often now, Brady will say nonchalantly say things like, "I can't see that far away because I'm blind." We try to normalize talking about blindness like it's no big deal. (Because, in fact, it isn't.)
How do blind people read?
Blind people can read using Braille. Braille is a system of tactile, raised dots that allow blind people to read with their fingers.
Do all blind people read Braille?
No. In 2009, the National Federation for the Blind reported that less than 10 percent of the 1.3 million legally blind people in the United States know Braille. It also estimated that only 10% of blind children were learning Braille.
Is knowing Braille really that important?
Yes. Without knowing how to read Braille, a severely visually impaired child will be functionally illiterate. The unemployment rate among the blind population is staggering (about 70%). However, it has been reported that about 90% of adults who read Braille are employed.
This is not that surprising. Forbes reported in 2020 on a study finding that sighted people with lower levels of literacy are paid quite a lot less than sighted employees with higher levels of literacy. So, for many blind people, learning Braille is key to literacy and, subsequently, employment and high earnings.
Can blind people do things independently?
Our son is still very young, so his independence is limited by his age. Sometimes his blindness does mean that he needs more help than a fully sighted peer. For example, he often needs help learning to navigate a new area. So if we're going for a walk in a new area or playing on a new playground, he will often ask me to hold his hand and show him around. However, when he's in an area he knows well (our house, his grandparents' house, school, familiar playgrounds, etc), he does not need any help navigating independently. He will go outside to play by himself, get himself snacks, take care of his plates after dinner, help us clean the house, etc. We encourage Brady to be as independent as possible.
Does Brady get any services?
Yes. Brady has OT, PT, a teacher of the visually impaired ("TVI") who teaches him Braille, and an orientation and mobility instructor who teaches Brady how to use his white cane.
How do other kids treat him?
So far, we've been blessed that other kids are usually very nice to Brady. He has a bunch of friends, who are amazing about including him and helping him when he needs help. One of my favorite stories is when we were camping at a campground and took Brady to the playground. A bunch of boys who were several years older than Brady took him under their wing. They played with him for hours, helped him navigate the playground, and did whatever Brady wanted. When it came time to leave, the boys were hugging him and genuinely sad that Brady had to leave.
Do you ever travel with Brady?
Yes! As of this writing, Brady is six years old and has been:
· On a road trip from Maine to Florida with stops in Georgia, Clearwater FL, and Disneyworld
· On a road trip from Maine to Tennessee with stops at Shenandoah National Park and Charlottesville, VA. We stayed in a cabin in Tennessee and explored the Great Smokey Mountains National Park
· On a road trip from Maine to Washington, D.C. with a stop in Gettysburg
· To Acadia National Park several times
· On a cruise out of Puerto Rico with stops in St. Thomas and St. Kitts
· To the Florida Keys and the Everglades National Park
· On a cruise out of Florida with stops in CocoCay and Costa Maya, and
· Countless camping trips in Maine.
What's it like to travel with a blind child?
It's not that hard. Because we are going to all new areas and he's still young, he does require more help than his older sister does. We have to describe what's around us to him and one of us is usually holding his hand or keeping an eye on him if he's using his cane independently to make sure he's doing ok. Otherwise, it's no different than traveling with any other young kid.
Is traveling overwhelming for Brady?
No! Brady ADORES traveling! He never wants to come back home.
How do other people (adults) treat Brady?
So far, we've only had really positive experiences with how other people react to Brady, whether we're at home or traveling. Brady's eye condition is obvious by looking at him (he no longer has a functioning cornea in either eye), so strangers can tell right away that he's blind, even if he doesn't have his cane with him. We've had ride attendants help him into rides, airport personnel go out of their way to be helpful, people offer things for him to feel, and more. I can't think of a single negative experience we've had yet, and we've had several great experiences that have brought tears to my eyes, as strangers have been extra helpful and kind to him.
Does blindness impact Brady's intelligence?
No! Brady is an incredibly intelligent, charismatic little boy. Academically, he is currently performing well above grade level.
Is Brady nervous around people?
Nope! Brady doesn't have a shy bone in his body. He will ask ANYONE for help if he needs it and loves meeting new people. He will initiate conversations anytime he nears someone nearby. One of my favorite stories was when we were in Bar Harbor, Maine and Brady and I were walking down a crowded street. A young woman was walking toward us and yelled, "Hello!" to her friends, who were behind us. Brady couldn't see that she was looking at people behind us, so he thought she was talking to him. He smiled, and said, "hello!! What's your name!?" The young woman was so sweet and they ended up talking on the street for a couple of minutes.
How does he learn things if he can't see much?
Since Brady is so smart and his vocabulary is so advanced, we can usually just describe something to him and he's able to conceptualize it. In other cases, we go out of our way to offer him other ways to explore things. So, we might get him things to feel and smell or different foods to taste.
Are there things Brady can't do?
There are things that are much harder for Brady to do than his sighted peers, absolutely. Sports that require vision (tennis, for example) are very difficult, although Brady still LOVES attempting them all. For some other things, like soccer, we adapt by getting Brady more accessible options. So, for example, he has soccer balls with bells on them, so he can hear where they are. He can't play as well as his sighted peers, but he still loves it and it makes it easier for him to be more included.
What kind of toys does Brady play with?
Since Brady can see light, he strongly prefers toys that light up or make sounds, although he has some favorite toys that do neither. Currently, he's obsessed with Bop It (he's beaten the game....more times than I can count), watching videos on his iPad, and marble run.
Does Brady ride a bike?
Brady doesn't ride a bike independently yet. He sometimes attempts to ride his older sister's bike in our driveway. But if we're going to go for a bike ride outside of our driveway, Brady has a Weehoo that attaches to my husband's bike. Soon we'll be upgrading him to a tandem bike. He also has a scooter that he enjoys using around our neighborhood, with us watching him to make sure he doesn't go off of the road.
My child/grandchild/niece/nephew is blind. Where can I find gifts for them?
Some of our favorite places to search for gifts (other than Target and toy stores) are:
· MaxiAids
· Seedlings (the best place we've found for reasonably priced Braille books)
What if I want to learn Braille? How can I learn?
To start teaching yourself the basics, I would recommend Just Enough to Know Better, a really easy and user-friendly introduction to the Braille code.
If you're looking for on-line courses, Hadley School for the Blind offers some free courses.
If you're looking to become certified in Braille transcription, the National Federal of the Blind, in partnership with the Library of Congress, offers certification courses.
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