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.
Gabe weaves himself into the fabric of life, tearing its skin layer by layer. He doesn’t shy away from the dare life throws at him. Instead, he picks up the stones and launches them back. “My experiences have taught me to enjoy every moment of your life, be patient and never give up hope,” he says. “Being a strong person has nothing to do with muscles. It has to do with having the will, determination, and courage to never give up hope.”
The gibbon barked again, and Tim laughed again. Only this time, it wasn’t just a short laugh, but was a long, rolling belly-laugh, the kind that makes every parent in the world melt with delight. I don’t how much time passed as we stood there with our new gibbon friend, but every time it would yodel, Tim would respond with more of those wonderful, deep laughs.
“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.
It is a Tuesday night and we are waiting for someone to die. This is the fifth time that I have waited anxiously for a phone call from the hospital to tell me that this stranger has died, and if the hospital is offering their kidney to my partner. On this particular night this patient on life support is a young man who overdosed. He did not use drugs intravenously, is under thirty and his kidney is in the top ten percentile as a match to my partner’s.
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.
