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Have you thought about launching your own ecommerce businesses? If you’re looking for ways to bring in some extra income while still being around to care for your kids, becoming an entrepreneur might be the perfect path for you! Parents with disabilities can thrive in entrepreneurial roles that offer freedom and flexibility unmatched by traditional employment. Of course, starting a business is always easier said than done.
I realize that in many cases the idea of having special needs or caring for someone with special needs can make other people uncomfortable, and they struggle to know how to help when they want to. I understand that from the outside looking in, special needs can seem like a horrible burden to individuals and families.
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.
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.
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.
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.
