How my sensory experience helps me know my son with CVI

When you have a migraine for three days, it is hard not to think of the sensory experience of your child who has cortical visual impairment (CVI). No, having a  migraine is not the same as living with the neurodiverse diagnosis of CVI. But as the migraine persists, it is hard not to compare it with his sensory experience. Could it be that my son’s sensory experience has made me more aware of the sensory experience of migraine?

Having seen plenty of neurologists in my own right, unrelated to my son, I have considered all kinds of information. Such as, A migraine is the brain’s way of avoiding seizure. This turns out to be false. Migraine and seizure are different conditions in the brain. There are people who experience both, which in my mind qualifies as the definition of hell, based on both my experience with migraine, and my son’s experience with seizure. Many children with CVI experience seizures due to the nature of their brain injury.

Most of the time, in ideal circumstances, the migraine medication works and the episode is short lived, though even a short episode can result in indescribable fatigue. Other times, because the migraine has progressed too far – with migraine, timing is everything – medication fails and the only option is to cope.

This migraine is proving to be a test of endurance. Even though I manage activities of daily living such as making coffee, getting my son ready in the morning, taking him to school, walking down the street, or riding my bike, all of it is a struggle.

Making coffee, the morning light from the kitchen sink window, which is difficult to avoid, feels unbearable. (All while trying to ignore the constant, loud HUMMMMMMM of the refrigerator on the other side of the kitchen.) Getting him ready for school means being ready to handle all of the sensory objections of a second grade boy with CVI that are involved in brushing teeth, getting dressed, combing hair (the worst) or some other, unpredictable sensory challenge that may arise without warning and would never have even occurred to me. School drop off means raising my head just enough to navigate through small throngs of small children, chatting in high pitch voices and moving about unpredictably, all while keeping an eye on my son’s path. As spring finally blossoms all around, walking down the street is its own kind of olfactory hell, as my sensory system is assaulted by the overwhelming scents of a host of flower and tree blossoms, freshly cut grass (not to mention the nerve grating sound of the lawn mower), a woman wearing way too much perfume, at least as registered by my sensorily overloaded brain. Lastly there is the outdoor odor of laundry dryer sheets emitted from a neighbor’s house, like a toxic cloud that I must pass through in order to arrive back home, safe. What I would not give for a scent free world, isn’t much. Riding a bike means wearing nice dark sunglasses, the white ones with black lenses that resemble a Storm Trooper’s mask, shielding my eyes completely. The sunglasses would be perfect if only they were not so perceptibly tight around my throbbing head. Fortunately the ride is kept necessarily short.

On this day of endurance, there is still work to be done, no one is going to do it for me. My usual work space is the kitchen table, which allows for the ample spreading out of school papers. The table is in front of a large, west facing window seat that makes it difficult to avoid direct sunlight for half the day. Indeed, this is the same spot where my son will sit and draw. Except on a sunny afternoon when I say, “Want to do some drawing?” He walks around the table, his back to the window, and declares, “No drawing…no SUN…” and leaves the room. This is a child in Phase III CVI who can spot a playground from the car, but will refuse an offer to stop at a favorite playground that is “too sunny.” Because it is possible to have cortical visual impairment and find light compelling – but also be photosensitive.

Sitting at the kitchen table, the clock ticks away the minutes like an hourglass as I race against it to get as much work done as possible before school is dismissed. School work, work work, child with a disability work. Normally I sit on “my” side of the table in front of a laptop, facing the window. There is so much work to be done but at least I can have a decent view. Migraine makes it impossible to ignore the bright afternoon light that floods in, flooding my brain. It is too much, too intense, impossible to ignore or to concentrate. All I want is for the light to GO. AWAY. My son’s IEP happens to be on the table top next to me. “Seat student facing away from windows, light and movement.” Of course, applying my son’s CVI accommodation, I shift myself and my laptop to the opposite side of the table, the light still bright but now, comfortably behind me.

It is hard to know if my own migraine sensory experience mimics my son’s CVI sensory experience but it must be similar. Sounds are loud and piercing, impossible to drown out or ignore, even something as seemingly innocuous as that HUMMMMMMM of the refrigerator. I have searched the interior of that appliance for an on/off switch, and tried adjusting the temperature knobs so that food remains adequately cold but the machine does not have to work so hard. Could I singlehandedly drag a stainless steel refrigerator, taller than me, away from the wall and pull the plug? Anything to make it STOP.

Migraine predates my son by nearly a decade but it was after his arrival that my sensitivity to sound, during migraine, became apparent to me. High pitch, droning, nerve grating sounds that cannot be ignored. All I have to compare it to is my son standing in a public bathroom with both hands covering his ears. Or a dog barking nearby, especially a small dog. “Big dogs have low barks, small dogs have high barks,” he has repeated this refrain many times. When a dog approaches, even when it is not barking, the first thing he will do is cover his ears, in anticipation. Cover your ears, I need to write that on my hand.

At certain times, he has gone so far as to tell me, “Mommy, that hurts my ears.” That hurts my ears. It is hard to know exactly what hurt means to him but at the very least it is uncomfortable, intolerable, unpleasant.

While this is not my son’s experience, many people who live with neurodifferences have difficulty with the sensation of touch. My own difficulty with touch stems from two distinct conditions. Migraine is one of those times. It may not be the same for every migraine sufferer, but do not touch people when they are experiencing migraine. That does not mean, Do not touch my head. It means, Do not touch me, not any part of me, not my arm, back, leg, nothing – do not touch me because it is painful. Sadly this even applies to a playful eight year old boy, who has developed a shyness of touch from unfamiliar people, understandably, but who thrives on physical play like running downhill, jumping, spinning, wrestling. But not during mommy’s migraine.

The other time when touch is off limits for me is during a skin contact allergy flare up. Years ago, during the original attack, when I had no idea what was going on with my own physiology, it became unbearable to have anything unnecessarily touching my skin. Small, sterling silver earrings that I habitually wore for years were removed, and are rarely worn now. The sensation of something is on my ear was near constant, again, as if you could not ignore it. That ear/earring part of the brain lit up and would not shut off. As you might guess, my jewelry collection is minimal.

Only recently is attention being given to the presence of scent in the environment, such as scent-free policies in some places. Having a mom who is unscented is surely a good fit for my child with CVI. (He will very sweetly tell me how much he likes my scent.) For me, exposure to scent during migraine is especially difficult. As for my son, his heightened awareness of smell plays out in his food aversions. He will interrupt me, midsentence, to ask, “Mommy, were you eating yogurt??” his small face scrunched up in disgust. Aside from somebody who has just eaten raw onions, in my entire life, I cannot recall ever identifying anybody’s food choices by their breath. Can you? When eating yogurt, I do so in another room, or once he is off at school. I cannot know the extent to which scents affect him throughout the school day. Along with color, light, movement, sound, I imagine that scent too, impacts his sensory experience. That brings to mind the time we were meeting a potential new play therapist. Of course, the initial screening took place over a long phone conversation but meeting her in person was something else. Walking into the room, it was apparent right away, visually, that this relationship would not work out: It’s not you, it’s us. The small room was chock full of shelves, toys, books, essential oils, instruments, rugs and what looked like a collection of grandmother’s multicolored square patch crocheted blankets, strewn over the chair and couch. A visual nightmare for a person with CVI. Walking into the room, my son sealed the no deal by announcing, “It smells WEIRD in here.” Opening a window, we sat down, talked with the provider, and made it through the appointment, never to return. It’s not you, it’s us.

On a cool grey, cloudy, rainy day you can spot the person with sensory overload by the hat she wears on her head, along with sunglasses. Because the cloud layer does not block the light, but diffuses it, everywhere. Sunglasses remain on while writing this post in front of the computer screen, my back to the window, as the migraine finally begins to let go.