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“People with Borderline Personality Disorder, like you,” Michael started but his words trailed into terrifying darkness as I cast my eyes about the narrow room. Whom, I thought, is he addressing? Certainly, I don’t have Borderline. I went home and took every online self-assessment test for Borderline that I could locate. The diagnosis remained the same… severe Borderline Personality Disorder profile.
Ever determined, even after the doctor diagnosed her with fibromyalgia, she tried everything to help us feel better. She changed her diet, workouts, and hydration. Plus, she fed us many supplements. We soaked in bubbles and salts, enjoyed massages, took naps, and basked in heat, but nothing worked. We still love her and try to do what she asks, but she only resents us. She does not want us anymore. Yet every morning we wake up thinking, Today is the day! We will do anything she asks and more. We try. We truly do, but nothing works. We are sorry she dropped the razor in the shower again this morning because the flexors could not contract. We feel her frustration when she cannot easily get into and out of a jacket because the left Deltoid has frozen. We feel bad about that too.
That’s the challenge—getting a smart, strong-willed boy to do hard work when he doesn’t want to. Heather and I know that if Isaac isn’t pushed to work on his speech delay, the problems he has now will only become more deeply ingrained and difficult to correct later on. While his speech delay does impact to a degree how he interacts with others—and I’m speaking here of those who are not with him all the time—his delay has not yet created an overall reduction in his quality of life. But that will change: classmates and teachers alike will grow to have less and less patience with listening to Isaac, which means that he will struggle to be really heard.
“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.
