Look at this photo. What do you see?
A) Parents that like to dress up their child
B) A child with a penchant for accessories
C) A visually impaired child (No, I didn’t think so.)
It’s ok. Three years ago, I wouldn’t have thought of it either. I thought being visually impaired meant seeing shapes in varying degrees of darkness. I thought it meant walking with a stick. I never understood the spectrum of vision impairment.
My daughter, Peaches (Why Peaches?), is legally blind. (At least, she is where we live. Different places have different criteria. It means that even with glasses, she cannot identify the top letter of an optician’s eye chart.) Outside, or where there is a lot of glare, her visual acuity is further reduced. She covers her eyes in any direct sun, because she is sensitive to it. She has a form of oculocutaneous albinism, OCA2. (Yes, that’s right, albinism as in albino. In her case, it’s not the kind without any pigment, but another type where there is some pigment. Over seventeen different types of albinism have been identified.)
Her vision will improve on its own in the next year. We don’t know by how much. Then, if her vision declines, it will only be the same way that a fully sighted person’s might – i.e. in a way that is usually correctable with glasses. Her nystagmus, a wobbling eye movement – which in her case is very subtle, was noticed at her four month check up (see Brain Tumor?), and achromotopsia was ruled out (see A World without Color?) when she labelled colors.
On a really gray day and just after sunset, my daughter will go without a hat and not complain it is too bright. Her prescription lenses correct farsightedness and astigmatism. They are transitional, i.e. they serve as sunglasses outside.
How much can she see?
Inside, with minimal sun, and outside wearing a hat and sunglasses, Peaches sees very well close up. She can see sand on a toy that she is holding, for example. She can navigate around people and objects without bumping into them. At a much greater distance, she can see familiar, well defined shapes, especially if they are large and in high in contrast to their surroundings. A tunnel, for instance, or the Golden Gate bridge.
This amount of vision all came gradually. Her vision has been improving since birth – just like for any child, but more slowly.
At eight months old, when most babies can see almost as well as they ever will, I think she could see a foot. I remember the first time she saw my mother outside through the window of our front room. I remember the first time she noticed the tree decal on her wall.
At thirteen months, she was noticing movement across the room but not aware it was our cats that she was seeing. Now she sees them enter a room.
That sounds great! So what can’t she see?
A brown dog, lying on dirt, in front of the trees a few feet away from her. The music teacher lifting a new instrument out of the box across the room. Toys on the floor while walking. (Even Orientation and Mobility specialists do not understand why but visually impaired children often do not scan down and up when moving. Perhaps looking forward is more interesting? Or perhaps more important?) I should correct what I said. Were Peaches looking down at the floor, she’d see the toys. But when she is walking, she does not. She does not know to scan down and look up, scan down and up. She trips a lot.
What else can’t she see? My face in a roomful of people, like a cafe. She follows my voice and her eyes light up with recognition about arm’s length from me. To be honest, I’m not even sure how much of my face she can see properly. She mistakes photos of other women for me fairly often. Have you seen the posters for A Dangerous Method? She looks at them in our magazines, points at Kiera Knightly and says “Mommy!” (I never said having a visually impaired child didn’t have its perks.)
Faces contain lots of detail and lots of detail close together is hard for her. (This is why reading, and especially learning to read, will be difficult because, look: cococococo. There is not much difference between a c and an o, or lilililililili, between and i and a l, especially in small font.) Just yesterday she said, “She has pink teeth!” referring to our cashier. Peaches knows what lips and teeth are, but this woman was not close enough to her to clearly discern the difference.
Her expectation of the world visually is based more on past experience than ours, sort of like how you thought that child in the photo up top was over accessorized. But you and I don’t make mistakes based on our visual cues that often. (By the way, if you ever see a person smelling their money, chances are they are visually impaired and LOOKING at the denomination of the dollar bill.)
She relies on her expectations the same way we might in non-visual arenas a lot. At a playground, she sees a bright red plastic object moving on the ground. “Mommy, want to play with ball!” But it’s actually a plastic bag, blowing in the wind. Also at a park, she sees something hot pink the size of a large toaster moving across the ground near the swings. ”Pink doggy!” she yells, gleefully. It’s a baby girl crawling at her mother’s feet. (That misinterpretation made me want to laugh and cry simultaneously. I was glad the girl’s mother hadn’t heard, and suddenly annoyed with Go, Dog, Go! for misleading my child that dogs can exist in a rainbow of colors.) At dance class, the teacher always goes to one corner of the room to hand out scarves. Then one day she goes to the adjacent corner. Where does my daughter go? To the expected corner, even though all the other kids, the noise and the bright scarves are across the room. She is learning at preschool the names of her friends’ parents. When someone arrives and a friend runs way, she knows who the person at the door is. She cannot see the parent’s face, but she knows who it is.
Even with visual stimuli that she can see, she is learning to make sense of things that were formerly confusing like tennis courts. She’d hesitate at the color change from red to green or vice versa. Is it a step? Is it a different type of surface at the new color? Often such changes mean a new height or texture. Shadow helps her understand depth too and she’s obviously figuring that out.
How does her vision impairment affect us?
In the beginning, the biggest adjustment was keeping the blinds down in our house to enable her to see.
We get asked a lot of questions, including, often, “Can she see out from under there?”
We have a lot of vision related appointments. So much of what we learn is learned visually, that Vision Impairment and Orientation and Mobility specialists help visually impaired children keep up with their peers.
Safety is huge – as it is for any child, of course. When younger (and her visual acuity was less), she’d scoot to the part of a play structure where bigger kids might jump off thinking it was a slide. She has recently walked into sliding glass doors when they were closed and then tripped over the frame at the bottom when they were opened.
We’ll have a lot to learn when it comes to school, to reading, and especially to her reading on the board. Finding the right preschool was a challenge, but we did it and are thrilled.
Little things affect me emotionally. When I see other kids nod their head yes or shake their head no, I can feel sorry for myself. See, I told you it was the little things. (And I know, one day she’ll understand I can see her from a distance, and nod. Or more likely she’ll shake her head!) I wish she could see puppet shows. (Then I remind myself that they’re never that good.) I wish she could see a circus. (But Cirque de Soleil has been recorded, and our couch is comfier than their seats, and our bathroom has no line.)
Most of all, when one day, I have to explain to her that her vision is not as good as other people’s, I hope she will believe me that we are all different, that we all have our own impairments to conquer.
On the plus side, her other senses are heightened in surprisingly delightful ways. She used to sleep with a bar of soap. She has at least twenty in her collection, and can identify each scent. She loves herbs: mint and basil especially. If I eat some chocolate before waking her from her nap, she smells it on my breath and asks for some. She has a highly trained ear and can mimic sounds eerily well. ”What does a toilet flushing sound like?” I’ll ask, simply so I can laugh at her response.
If this information helps someone whose baby was recently diagnosed with albinism, I will be glad. If this post helps spread awareness of visual impairment, I will be elated. And just for the record, I didn’t let my husband take her out as she was in first photo. Don’t worry, she was shaded and maintained her fashion integrity.