Another example of “is it typical behavior for a child?” raised its head when Tim was about fifteen months old. Between having ACC and hypotonia, Tim struggles with sensory issues—in particular, getting enough sensory input to allow him to process the world around him. Seeking this sensory input, Tim discovered that banging his head against the wall was a great source of input—it had a calming effect on him. But, there he was, banging his head against the wall for minutes at a time. We didn’t want to stop him from getting sensory input (if that’s what was happening), but we wanted to make sure he wasn’t banging his head against the wall for other reasons.
As a parent of children with special needs, I think that setbacks are often the most discouraging part of our children’s journeys. We can go for days and weeks and months watching them make progress and believing they have mastered a skill, and during these periods, we begin to convince ourselves that all of the challenges are behind us. But just like Icarus, I tend to fly too high, and allow myself too much complacency. When the setback occurs, I tumble.
It is easy to become myopic in regards to the needs of my kids. I tend to hyper-focus on crafting an environment where my children can thrive without having to face the challenge of relating to other people. I so badly want ‘perfect’ for my kids, that I often overlook what the impact on the surrounding world will be. I’m that dad that at the park will intercede on behalf of my kids when someone cuts in line for the slide. While my intentions are good, there is no reason for me to jump in like that—the world we live in is one where my kids will need to know how to be patient, and have good social graces, even when those around them don’t.
“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.
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.
