Blog Hop 8: How a Connection with Disability Changed How I See the World

Hi. My name is Cathleen, and I’m reformed control freak. Okay, I’m still kind of a control freak, but I’m mostly reformed. And I have my son’s disability to thank for it.

For the first 37-ish years of my life, I lived a pretty ordered existence, in a way. I’ve always gone with the flow in terms of little details, but when it came to the big picture, I generally liked to be in control. That’s why I’ve never so much as touched drugs—not even marijuana. It’s why I can probably count on one hand the number of times I’ve had too much to drink, too. I’m a control freak; I don’t like to relinquish control. And in my controlled, big-picture world, I had everything planned: I’d work and have a couple of kids. They would grow up to be productive members of society in some way (I’ve never been one to think that college is a must for everyone, but I’ve always believed that people should contribute to society in some meaningful, productive way), and they’d go off and live their own lives eventually. And then, my husband and I could resume traveling, which is a great passion for me (and a great pleasure for my husband, too).

So those goals are pretty general and not overly controlled, but they were cemented in my mind. And everything we did was working toward those goals. And then along came Sam, and suddenly that well-planned little world we had envisioned was knocked off its axis. It wasn’t smashed, mind you—our general goals are still there and still achievable. But it was knocked off its perfectly aligned axis, and we suddenly realized we didn’t have the control we thought we did. Within a span of five weeks, Sam was born and given a diagnosis of Down syndrome, and our older son, Theo, was kicked out of his preschool and subsequently diagnosed as being on the autism spectrum. None of those things was in the plan. And at first, we reeled and wondered, What is the plan now? What does it look like? What do we do? How do we control this?

But we got smart pretty quickly and realized that we can’t control it. And that there’s no point in controlling it. We’re actually being taken on a beautiful ride here, and we might as well just hop on and enjoy it.

With Sam, we’re learning that old cliché about stopping to smell the roses. Sam does things on his own time, and he is certainly delayed—there is no denying that. But he does things eventually, and when he does, oh how sweet those roses smell! And watching him accomplish things is nothing short of amazing. He has a patient determination that is quite unlike his older brother’s fierce determination. They are both determined little boys, but Sam’s is a much more quiet, patient determination, where Theo’s is full of fire.

Learning to just watch where Sam takes us has also taught us to throw the damn milestone chart out the window. It’s nothing but a depressing piece of paper, and frankly, our lives are far more peaceful without it. We don’t worry about the when or the if; we just watch and help where needed and see what happens. It’s peaceful and it’s beautiful.

And with Theo, we’re learning to see the world in a different way. An educator recently told me “When you teach a child with autism, that child teaches you.” I wholeheartedly believe that. Actually, I think any child can teach you something. But watching a mind like Theo’s at work is kind of like learning a new language—there are some similarities to your native tongue, but it’s a different and beautiful lexicon. We’ve learned to sit back and let him explain things to us, because it’s fascinating to see what goes on in his mind. Is he always right? Not even close, but it’s always an interesting journey to see how he gets from Point A to Point B. And it certainly makes parenting an interesting journey, because we are constantly working on new and creative ways to try to connect with him.

So I’m not the control freak I once was. I still want the same general things: I want my children to be happy and productive, and I want to travel again someday. But my definition of “productive” is broader than it was before, and my travel plans have changed to potentially be a party of three, if Sam wants to join us. (Heck, they could even be a party of four if Theo wants to come, though I’m pretty sure he’ll be off trekking the Himalayas by the time he’s 20.)

But there is one area in which I’ve become more of a control freak due to my connection with disability, and that’s in my friendships. We have been lucky enough to have tremendous support for Sam—our friends and family love him unconditionally, and we didn’t have the experience of people turning their backs on us when we had a child with a disability. (You’d be surprised how many of my friends with children with disabilities have had that happen—it’s truly sad!) But my tolerance for certain things has changed. I ended a friendship this past week because a supposed friend was using the term “special needs” as a joking way to refer to herself. I sent her a private message explaining why that was offensive to me, and explaining that I knew she hadn’t meant it to be personally offensive, but that I wanted her to understand why people in the special-needs community take it so personally. Instead of apologizing in any way, she defended her right to use the term in a mocking way. And then proceeded to post two more public statements using it again. I felt as if she was hell-bent on defending her right to say it publicly, instead of recognizing that it was hurtful to at least one of her friends. And so, I ended a 15-year friendship. I just don’t put up with that crap anymore. Life’s too short, and my son’s future as a human being with equal rights is too important to me. When he was born, I made a promise that I would do everything in my power to make the world a more open place for him, and if I turn a blind eye to someone making a mocking remark about people with disabilities, I’m certainly not fulfilling my promise to one of the most important people in my life.

So there you go: I’m still a control freak in some things. I guess disability hasn’t changed me completely. 🙂

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