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.
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.
“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.
