The Road We’ll Travel

This is now my son's favorite book, for now he knows he's not alone.

It’s been quite a week. My younger son, now nine, was formally diagnosed with Asperger Syndrome a few days ago. Finally. It’s a relief to have the formal diagnosis, since it gives us some direction when trying to help him interpret and understand the world. Appointments are already lining up: a psychologist, a psychiatrist, and a social skills group are all finding spots on the calendar, and having a formal diagnosis greases the wheels needed to get that support.

So if I’m so relieved, why can’t I sleep? Why do I feel, even more than a few weeks ago, that I’m depleted and ready to go to bed by 4 pm? Why is my patience so short with my children, just at the time I should find deeper tolerance and acceptance for their universe-given quirks? And, above all, why me?

Why not me? It’s the sort of question, as a divorced mom with a kid with ADHD and a bad case of being 13 and another kid with AS, both homeschooling, that anyone might be prone to ask. I’m not a believer in karma in the formal sense, although I do think giving positive energy via attitude and action, compassion and unconditional love, does good for more than the receiver and giver. But times like this make me wonder. Did I do so well in a previous life that I was deemed to handle all this? Or did I do so poorly the last time around that I’m receiving challenges to strengthen my being?

It’s not really worth long consideration, given I don’t hold to reincarnation. Perhaps it’s the concern that I could come back in much more trying form the next time around: a mother in subsaharan Africa with five mouths to feed, HIV, and the constant risk of become a political refuge; a girl from a multitude of countries sold into the sex trade before puberty; a head of beef cattle living my short life on a factory farm up to my cow knees in my own excrement. You get the picture.  Besides, the reincarnation thing just seems too neat and tidy. And I can’t see how it takes into account the ever-changing number of living things on the planet. Or perhaps one could reincarnate elsewhere in the universe? Too muddy and full of details for me. But still, I sometimes wonder why me, then think, why not me?

I’ve always maintained that I’d never change another person’s troubles for my own. As challenging as I find my life sometimes, it’s mine, and I kinda get it, from the quirky kids to the temperamental hot water tank. I know my stuff.  And while I know my path so far has made me who I am today (and I’m basically okay with that person, except in those fleeting moments of crushing self-doubt), I wouldn’t have minded a few less obstacle in the past few years.  It’s a bit of a downfall to a faith without a deity and a comfortable stance on the uncertainty of what happens after death:  there’s just no higher power to ask nor to whom to wail and gnash teeth.  Placing faith in the universe and the love we create when we’re compassionate beings has its upsides, but one-to-one conversation with the powers that be (and that’s my sticking point) are a bit of a loss.

Enough whining.  I’ve been vamping with my younger for so many years, nine and half, to be precise. Now I have a label that offers a path. I know there’s no cure and the path is still full of washed out roads, rocks, and (my worst) snakes, but at least I’m not on my own in the wilderness brandishing my machete in virgin jungle. There’s relief in that, respite even, however brief.   As far as we’ve traveled, there’s so much more ahead of us. Asperger Syndrome isn’t going to disappear at 18, although he’ll likely learn skills that help him navigate what he admits is a pretty odd world for him.  And as we go, I’ll hold to unconditional love, radical inclusivity, and compassion to guide us through this universe in which I place my trust.

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3 thoughts on “The Road We’ll Travel

  1. Having a life that is in some ways better than the norm yet in many more ways worse, I have often wondered not just “why me?” but “why anyone?” Science has answered some of my questions in recent years and my contemplation of the Great Mystery helps to a degree, but this does not change the fact that I am still forced to live in a world where I rarely feel at home.

    Several years ago, I frequently thought of how my life could be worse: I could be terminally ill and in constant pain, a child laborer in a sweatshop, or a political prisoner who, upon awakening each day, is unsure whether or not s/he will be tortured or executed. Such comparisons often helped me through particularly bad days, but were not therapeutic in the long term. Eventually (and for reasons I do not recollect) I had a “eureka!” moment: if I had a graduate degree, a rewarding career that paid a six-figure salary, a loving family, a network of close friends, and was a talented athlete/artist/activist as well, I certainly wouldn’t question my positive statistical-outlier status. Therefore, was I really entitled to question my (mostly) negative outlier status? The answer, I decided, was no.

    For reasons known and unknown, people are born who do not fit society’s definition of normal. Our lives are frequently frustrating, not primarily because we lack material success and social status (though we usually do), but because we are frequently denied opportunities to share what gifts we have to the fullest. My life is a bank of storm clouds with sparse but intense sunbeams shining between gaps, brass poles that I sometimes must cling to for balance. I know the brass ring is not the point, a lesson people rarely learn when they are “normal.” Being different has given me wisdom, for which I am grateful. On the infrequent occasions when I have a truly good day, I am grateful as well.

    http://en.wikipedia.org/wiki/Positive_Disintegration

    • Thank you for sharing your look at life from the outlier perspective. When my mind wanders to the trouble my son may face a decade down the road, I work hard to bring them back to now, He has gifts to offer the world, but I fear that his prickly relationship with the human part of the world could make those gifts difficult for the world to see. I’ve often told my children I parent them with three goals in mind: I’d like them to be basically happy with their lives, live productive lives (lives with a purpose beyond the end of the child’s nose), and I’d like them to be people that other folks want to be with. I’d hate to see them lonely, and I really fear that for my younger, especially as social stakes get higher.

      But back to now. Today, he is basically happy (and delighted to learn about AS and share the info with his friends), productively caring for our foster kittens as well as learning about the world at a breathless rate, and has good friends. Good stuff. Thanks again for sharing.

  2. Yes, the world will always be pretty odd, as you relate that your son admits. It remains odd for me today, for a woman who was diagnosed with AS in adulthood.

    Like your son, “All cats have asperger syndrome” is my favorite book — the very first book I read to explain my condition to myself. It was very comforting to see something so familiar and so loved presented in a way that explained what was an entirely new concept: there was a thing called “Asperger’s syndrome” and I had it!

    I can’t tell you how liberating it was to know that there was finally an explanation for the issues I had struggled with in childhood: being shunned and bullied by my schoolmates because I couldn’t figure out how to fit in, ongoing struggles at the dinner table to eat food that made me gag, being condemned as a “brat” by strangers who saw me act up from stress.

    Your son is fortunate that he was identified as having AS. His counterparts in earlier generations had to get by as best we could without that self-knowledge to assist us.

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