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When I was down, my grandmother would tell me, "If you put your troubles in a bag with everyone else's, you'd probably take your own troubles back out again."
No matter how much I might wish for things to be different for C, and for us, I wouldn't trade in my life for anyone else's. I try to remind myself of this when I feel down.
The downsides of having a child with two major challenges — autism and a rare lung disease — are obvious.
But there is, ironically, one upside to this combination: C's autism means he never notices the odd (and occasionally hurtful) stares he gets because of his nasal cannula and 25 feet of oxygen tubing. Of course, I wish he weren't oblivious to others in most situations, but if I'm looking for a bright side, his inability to take in the stares of others is one.
When we first began to notice C lining or stacking things in neat rows and piles — toys, blocks, food — we were concerned; it's one of "the signs" parents are told to watch for, one more thing to worry over. Accompanying the ordering of objects was the eventual meltdown if they fell apart or weren't just so. Another sign.
While some ASD children are constantly arranging and stacking, for C it was a side activity, not a full-time vocation. Still, it was worrisome.
However, after we received the autism diagnosis, we began to think of these little arrangements differently. No longer were they so concerning — we already knew what they meant. Instead, we began to appreciate them as C's little displays of public art, visual insights about what is going on in his mind.
And this is a metaphor, I think, for the journey the ASD parent may take with their child, from fear and denial to the eventual acceptance of what is, and possibly even an appreciation for these things that make a child unique.
There is beauty to be found, if you can accept it.
If you're lucky, you will have a defining moment in your life. It might not seem lucky at the time, but consider living without one.
Going on this journey with C has changed me in profound ways, and we're only just beginning. Nonetheless, I'm trying to allow the changes to help me grow, learn, and find new meaning in my life, a redefined purpose. I'm not grateful for what he's facing, but I'm finding some solace in the positive changes I see happening in myself.