This video changed everything in my son’s education and development. Annette Ferguson made the video, I have absolutely no contribution to it. I share it with every person I can because it will change how you interact with anyone with albinism. Often people assume you can see everything, or nothing at all. It’s much more complex than that.
Seven minutes to build Ollie’s entire educational foundation is pretty amazing. How did this one video change and impact so much? It taught us how he could see, which made it easy to adapt to his needs. We watched him and knew his right eye was stronger. We adapted by showing him things from the right side first.
When Ollie was about 8 months old and learned to crawl, he would run into the walls trying to see. Due to his right eye’s strength and his nystagmus he had a large head tilt in order to maximize his vision. He would smack that cute little head into everything. They do not warn you appropriately about child proofing. We should have lived in a rubber house. Once we understood why he did it, all we had to do was put a hat with a cap on his head. He didn’t have the depth perception to tell where things were, giving him a barrier taught him.
If you’ve ever seen my son run in our house you would be amazed. It’s not that he sees things better, he is familiar with them. His muscle memory is astounding. Everything in our home has a place, we rarely make big changes. We have what seem like silly rules like the floors cannot be covered with toys or objects. We stop play to pick up the toys if there is not a large enough area of movement. Ollie forgets he was playing in a space and that there are toys which inevitably means he’ll fall and get hurt.
Whenever we clean Ollie has to be apart of it. We tell and show him where everything is. It reinforces his independence and muscle memory. It’s not about cleanliness but his safety. It is pretty awesome though when you ask him to get you something and he knows where it is.
He doesn’t have any depth perception which is part of central vision. He doesn’t fall down our stairs, unless really tired, because of his muscle memory. But if he uses the front porch steps without his cane he falls. The change in light affects his ability to see. Outside conditions are not stable enough for him to really maintain any muscle memory. There are other forces at play too that override his senses.
Fine detail, also a part of central vision is his ability to see things like facial features. He gets really close to people when he’s talking to them to try and see them. He will likely never just read a book even with large print without adaptive technology. Fortunately our technology has grown significantly in this area.
The closer he is to the object the better he can see it. He will often bring objects close to his right eye to try and figure it out. We also allow him to get close to the tv he almost looks like he’s kissing it. But television has helped him to see many objects we weren’t able to adapt for him. It actually increased his vocabulary and identification of everyday objects.
We were surprised to learn that Ollie has great peripheral vision. He can make out the large general picture of things, tell that things are moving, and where they are coming from. This was a major growth for him and completely changed his development. He was behind about a year and a half through most of his toddlerhood. Now he’s normal or above in all areas save speech.
The lack of fine detail and inability to see facial features means Ollie can’t tell how you make that sound the way you do. They say that vision is 80% of development, we learn very quickly with this sense. Diminishing vision quickly decreases your ability to learn efficiently. He is not mentally delayed or unintelligent, he just takes longer to complete the same developmental stage.
Nystagmus is the motion of his eyes. They are always moving, almost dancing. This can cause educational delays because it is very distracting to focus when your eyes are looking at everything. It is often described like Attention Deficit Disorder. It is not behavioral, he is not ignoring the task, his eyes naturally move.
We’ve had educators get very upset that he doesn’t always look at your face or directly at the item you’re showing him. When he isn’t looking it is often because he is focusing. He will turn his head so that his ear can better listen and stay very still. This is his form of active listening as we have tried to explain. But many educators have not worked with visual impairment in children or do not understand that his eyes are different.
I hope you’ve followed his journey enough to know by now that nothing is impossible. He may not look at your face, he might touch it with his hands. He may not look at your object but he’ll check it out with his other senses to really know it. The idea of one way to educate, or one kind of normal, just isn’t reality. If you allow him to learn in a way that he can interact and adapt, he flourishes. I believe any child in those conditions would as well.