Not Broken

09-10-c-above@2x

“When I was small, I didn’t even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem.” — Naoki Higashida, The Reason I Jump

My latest fear: I don’t want C to grow up thinking something is wrong with him, that he’s broken or damaged. But how? He knows something is different. He’s used the words “autism” and “ASD” in reference to himself (and that’s okay). He knows his twin lives a different life, goes to a different school. He knows he has special people who come to our home to work with him almost daily. He experiences all the doctors appointments, the evaluations. He’s contended with being attached to oxygen equipment 24/7.

So what can I do to prevent him from thinking he’s broken or damaged?

I’m not sure, but perhaps it starts by not thinking these things myself.

3 Comments

  1. My friends who have suffered from polio and post polio syndrome liked the phrase differently abled not disabled

  2. I’m going through the same challenges with my own three sons, each of whom display ASD spectrum traits even though only one presents enough of them to get a formal diagnosis and the accompanying support services.

    If this helps, one of the revelations for me was being diagnosed in my mid-40’s with Attention-Deficit Disorder, and being told that I was this way all my life. Growing up in the 60’s and 70’s there were no real classifications for this state of being – you just were the way you were – and the transition to adulthood was about learning to leverage the positive attributes and mindfully manage the liabilities of the person I am. I’ve subsequently been informed that I have ASD characteristics myself, and that some or all of what my sons present with has a genetic connection to me. Like puzzle pieces, these are all inputs to seeing a bigger picture and it’ll help me raise my sons better.

    Seen from another perspective, I spent four decades just being “me” before I encountered a professional who qualified who I am by attaching a diagnostic label. The outcome was a positive thing overall, because it gave me a new awareness of myself when viewed from this perspective, and I now see patterns in my sons’ behavior that clearly relate to my own at that age.

    In the broader sense, though, it didn’t change who I am and how I think of myself as a person. I never thought of myself as “impaired” or “broken” growing up. I was different to be sure – socially inept and overly sensitive to certain things most of us deal with easily enough, but also smart, creative, and optimistic about life.

    As the years went by I met people who started off with all kinds of impairments – being blind, paralyzed, dyslexic, dangerously allergic to everyday things, emotionally damaged, and more. Some of these people were doing okay in life, and some weren’t. If I could find one common theme that distinguished between the two states, it was the ability to see one’s life as an opportunity to go forward from wherever you were to somewhere you wanted to be.

    The simplistic way to say this is that the only truly “broken” people are the ones who can only see a glass that’s half-empty, and not one that’s half-full. Years before my diagnosis, I was profoundly influenced by someone who said that life’s a matter of playing with the cards you’ve been dealt and having the best experience you can with them. Someone will always get dealt a better hand than you, someone else will get a worse one, and fairness has nothing to do with it – that’s just part of life. However, your cards are your own, and it’s very empowering to see yourself in control of how you get to use them to move your life forward in the directions you want it to.

    One other metaphor that may help. When I studied martial arts, an inevitable question for the teachers was “Which style is best?”. New students always ask this because they focus on what one style has that another one lacks, as if there’s such a thing as an optimal style that lacks in nothing. The best answer I’ve heard is that personal growth is like a trip up towards the top of a mountain:

    – There’s no single “right” way, and they all get to the same destination if you keep moving up.
    – Some ways are easier than others, but there’s something to be gained from any effort.
    – Choosing one path means not choosing another. Don’t regret the path not taken, but make the most of the path you’re on.
    – You should respect and appreciate that someone taking a completely different way up will have different experiences than you. Keep an open mind, don’t judge, and be patient if they don’t understand what your path up the mountain is like.
    – Some people climb better alone, and others with companions – it’s all good as long as you’re helpful to others when they need it.
    – Climbing forward in life can feel like a struggle at times and more trouble than it’s worth, but it always leaves you higher up than where you started.

    The path forward for C may not be as straight or easy as it is for others, but one of the best cards he’s been dealt in life is having the deeply caring, engaged and loving parents he does. He also lives in a time and part of the world where tremendous opportunities are available to him, and as he grows into the wonderful man he will eventually become, he will never need to regard himself as “broken” – he’ll be his own person, who found his own unique way to climb the mountains in his life.

    • Thank you for this touching and thought proving post.

      And thank you Anonymous with the 3 sons, for your post.

      Both of you made a difference in my life today and your children are blessed to have you on their path.