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“Tim. Timothy. TIMOTHY!” This call has become the standard in our home. When Tim was about a year old, we figured out that he has a three-second processing delay. In other words, it takes him almost three seconds to process and react to whatever information he is presented with. It also means that getting his attention can be challenging, even under the best of circumstances.
So, your child goes through the intake assessment, and you fill out mountains of paperwork, and the day finally arrives: you get to meet your child’s therapist. Whether this meeting occurs in your home, or at an outside location, the first session is very much like a first date. Your child’s therapist (you’ll come to think of the person as your therapist as well, trust me), will be observing and interacting with your child, in order to put together a course of therapy. At the same time, you are watching the therapist, to see if your child responds positively toward that person and if you find that person agreeable.
If you are a parent, or are considering becoming one, you are most likely familiar with the dreaded developmental “milestones” list. You know, the one where a group of scientists (who clearly did not have children of their own), raised a group of robo-super-children in a laboratory, and charted all of the development that occurred as those robo-kids grew older. Then, they published that list and gave it to pediatricians and other developmental specialists.
Being the parent of a child with special needs brings a particular set of challenges with it. There are the numerous doctors’ appointments, and specialists’ appointments, as well as trying to work “therapy” into everyday routines at home. Often, it seems like there isn’t enough time in the day, or the week, to get everything accomplished for my children that I’d like. This can be very frustrating, and it often makes me feel like a failure as a parent. But there is another, more insidious issue that can affect parents: the undiagnosed special need.
The doctor was a kindly older gentleman, with the white hair that inspires confidence in patients in hospitals the world over. He was in our room on the family floor of Northside Hospital in Atlanta, Georgia. I remember seeing his nametag as he walked through the door, but as the attending physician on the floor, I’d never seen him before, or would again, so I can’t remember what his nametag said. He’d come to us to deliver, what, in his mind, was tragic news. Our son, Timothy, less than a day old, had been diagnosed with Agenesis of the Corpus Callosum.
This COVID-19, this has changed everything. Nothing will be the same. When I’m suffocating in my own presence in my apartment I quietly gasp for clarity with these little Zoom calls, texts and Netflix viewing parties. I see all these beautiful pixelated faces. All these souls that I rather experience in person - a luxury that I can’t have. I patiently wait for them as their picture flickers on the screen and as the glitches finally sync their words with their mouth. I yearn for the familiar voice of those who know me best. It feels like most times my soul is trying to leap through the glass just to be with the ones I love. I feel foolish.
I was born a stutterer, from a long line of family with a variety of speech “impediments”. Talk to a group of us at a family reunion and you too, will leave as a stutterer. My father, who stutters, had the foresight to insist that I attend speech therapy sessions. Twice a week, for nine years, I slipped out of class to sit for 30 minutes in a room a little larger than a broom closet, and practiced phonetic sounds in front of a mirror.
School was a horrendous experience. Teachers were hesitant to call on me, kids would constantly laugh and tease me. My parents, as parents were back then, were very practical. They had little patience for you feeling “sorry” for yourself. My dad often told me that life was seldom fair- in fact, fair has no real definition. And my mom, always to the point, told me to learn to deal with the cards I was dealt.
Usually, I kept my face neutral and straight and did not talk at all. Sometimes, my oppressed feelings would burst out as tears, ranting, and self harm. I cried that I wanted to die rather than living. One family member would respond: “Then go out and kill yourself." At those moments, I felt I was unable to speak anymore, so I would go to my room or outside to cry and do things to relieve anxiety such as biting my fingers or tearing books. Throughout the years, I became accustomed to the violence around me.
An onlooker looks at a mountain, but the left half of it is gone. It’s not really gone—other folks looking from his location will say that there’s an entire, beautiful mountain there—but the onlooker will insist that he can only see the right half.
This onlooker has Hemispatial Neglect, a disorder characterized by lack of awareness of one side of space. It’s not the same as being blind; someone with Hemispatial Neglect can still have very good vision. It’s not even like you’re closing one eye. In that case, you’ll still be able to see pretty much the same thing as when both your eyes are opened, though the image is slightly shifted.
My writing is inspired by the comfort I feel from reading articles about living with mood disorders. That kind of catharsis is priceless, and the way that information resonates with me means the difference between giving up on life and sticking around to see if I can create a healthier way of being.
