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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.
It's a question I've been asked by adults a few times, so I assume it's on the minds of many more. It's a question I genuinely appreciate, since it means the person asking it wants to interact with C. So, here's my answer:
Yes, please talk to C. Please ask him questions. Please engage him in play. Yes, please treat him as you would any other child.
Be prepared: he may walk away from you while you're mid-sentence; he may not seem to notice you or be interested in you; he might even seem distant or aloof.
But know this: he's not rude. He's not trying to be hurtful. In fact, he actually does want to be able to engage with others. I know, I've seen how he lights up when it happens.
Yes, there is a little boy inside C. Please, by all means, feel free to talk with him.
Last night I had a dream that I was driving rather fast on a highway. I don't remember where I was going or why, and I was alone. The road grew dark, and it became very quiet in the car, but still I was moving. There were no other cars on the road; nothing on the sides of the road; no stars or moon above, just pure darkness outside.
I could only see a short distance ahead, which was quite frightening, but I also feared that if I slowed down something terrible might happen. I woke with a start.
I'm not one to assign meanings to dreams; I tend to think they reflect an overall mood or state of mind rather than a direct message. But this morning I couldn't shake the dream. I kept coming back to it.
Then it struck me that the dream is kind of a metaphor for the journey I'm taking with C: it can be frightening, isolating, claustrophobic, with no clear understanding of a destination, leaving only the thought that slowing down—giving up—is not an option.
And so on we go.
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.
Our twins, M and C, have been together since inception, near each other always, except for brief stints when C was hospitalized for lung disease.
They are close in many ways; they even look enough alike that people often ask if they're identical (they're not). But since C began retreating into his own world, they began to have parallel lives. They are usually near each other physically, yet there is a distance between them as each goes about his own activities.
It's clear M and C love each other, and that gives me great hope.
Therapies began in earnest a couple of months ago, requiring C to be apart from his brother for hours at a time. The distance increased.
And now we're beginning to accept that they won't be going to preschool together next year: C will go to a school with a program that is best for his needs, and M will go elsewhere. Their days will be spent apart, and the distance will increase.
I can already envision the day when M comes home and tells us about his new best friend, someone not C. I will be happy for M; he deserves that. But I will also feel heartbroken for C, who may or may not understand what this means.
We'd always dreamed our twin boys would grow up as best friends and lifelong compatriots, two people who know each other in ways no outsider ever could; I hold out hope that will still be the case, that it's still possible.
But illness, autism, and now the school system have put a wall between these brothers, a wall I'm hoping will come tumbling down if we just work hard enough.