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But you know what, that’s the beauty of having kids. I don’t understand a lot of the things they do. I’m not supposed to, at least not at first. They are going to teach me new things. They are going to do unpredictable things, and I’m going to grow as parent because of it. It’s ok for them to be jealous of petty, silly things. It’s ok that they complain that it’s “unfair” that the other boy has to go to therapy. Every day, they do something new, and I learn something new.
If you’re a business owner looking to fill roles in your company, it’s important to think outside the box as you search for candidates. You can do this by hiring freelancers, rather than big-name agencies, and you can look to candidates like those who are disabled, seniors, and veterans. And as you bring on new employees or freelancers, consider ways to improve your workplace in order to foster a positive work environment for a diverse staff.
And even when you spend the energy to correct and call it out, you then have the back and forth of having to explain exactly why it was problematic. The burden of that shouldn’t have to fall on Black people. Arline Geronimus coined the term weathering back in the late 70s to describe the impact of racial discrimination on Black people. She found that Black people had higher incidences certain illness due to the stressors that are common and chronic in their lives. This constant stress and the effect it has on the body is what Geronimus refers to as weathering.
How to tell him about his condition, and when to tell him became the question. Do you tell a two-year old about brain scans and Probst-bundles? Do you wait until he is ten and can fully process the science of it all? We decided, after much deliberation, to begin explaining this to Tim at such a young age that he would never be able to remember a day in his life when he didn’t know about ACC. We started by explaining in small ways, that his “thinker” was a little bit different from other people’s but that it was a good thing, because it made him special. Over time, we’ve come to refer to Tim’s ACC as Magic Brain, as in, “Tim has a Magic Brain.” We started with that when Tim was just about two years old.
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.
