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I am above C, looking into his eyes. (I feel grateful that he is able to make and sustain eye contact with me.) After a moment I ask:
"Nose kisses, C?"
Without hesitating he reaches up, puts his hands on either side of my face, and pulls me toward him. Our noses touch, we rub them back and forth, and we both giggle.
Here is a photo that breaks a tiny bit of my heart.
It was taken yesterday at a third birthday party for one of the girls in C's preschool. The children—including C's twin—were engaged in dancing, singing, pretend play, and other group activities. Meanwhile, C was mostly on the outside, the periphery, looking in, standing to the side, his little hand curled in something I think of as a manual question mark.
But maybe I'm painting an unfair picture of the situation: C wasn't hiding, and he wasn't in a corner. He wasn't frightened and he wasn't resistant. He was watching the children, observing, taking it all in. In fact, several times he did participate, in his own unique way. And he was clearly enjoying himself.
Still, it's painful to realize that this isn't the picture of typical childhood shyness or fear; this is autism...and I'm just going to have to learn to be okay with that.
I hadn't intended to post videos on ASD Dad, but this one conveys in a very powerful way the need for greater acceptance and compassion toward those we might otherwise ignore. Watch to the end; it's only one-and-a-half minutes.
A brief description from the video's creator: "Pro Infirmis conducts an experiment: there are only a few people who don't have empathy with disabled people. Nevertheless, the passenger seat in the public bus next to Fabian often stays empty. Handicapped people are a regular part of our society."
Fabian is the man in the suit.
I was going to write something about today being the two-year anniversary of C being on oxygen, but I think my wife said it better than I could have.
From my wife:
Today marks exactly two years that C has been on oxygen, all day, every day. He continues to be a real trouper, accepting that he gets caught on furniture, wraps himself around our chairs, and gets stuck in doors. There are cuts and rashes on his face from the tape, and the skin under his nose gets raw because we're not allowed to use petroleum jelly. We marvel that he doesn’t complain. When we take off the cannula and tape and replace it, he lies there patiently.
I know he’d like to be free—when he’s outside and gets disconnected he shoots off running with glee—but for now he trusts us and wears his cannula without question. He turns his oxygen concentrator on and off each morning, and he teaches his parents the meaning of dignity and patience every day.
doublewhammy
There are a few preschools near us that are a good fit for children with C's type of autism, but as soon as they find out that he's on oxygen, they tell us they don't think they can take him. Mind, you, these are schools for children with disabilities; these are schools that collect taxpayer money to help provide services.
Oh, they're all very nice: "We think C would be a great fit, and he would thrive here. Unfortunately, we're worried about his oxygen tube; it could be a tripping hazard for the other children." Read: "We don't want to get sued."
So we bring C to these schools so they can see how well he negotiates the tube; how other kids are actually quite aware of its presence and navigate it pretty well themselves; and we tell them we can get a nurse to shadow C to ensure the tube isn't a problem.
The response is always the same: "I'll discuss it with our board." The meaning is clear: your son's not getting into our school.
Some well-meaning friends have said this kind of news might be a good thing; after all, why would we want to send C to a school that doesn't think they can handle our son's issues? The problem is there are a very limited number of schools that deal with autism, so if none will take him, where does that leave us? Sure, we can hire an attorney to fight the system (it's pretty obviously a violation of the ADA and other regulations), but with what resources? And what if the schools fill all the available slots in the meantime?
And so we're faced, yet again, with the fallout from the double-whammy of lung disease and autism.
camelbak
On a positive note, I've learned that some kids on oxygen are learning to use small backpacks with mini air tanks in them, so they won't have a tube snaking around behind them. I've ordered just such a backpack, and hope to load it up with weights this weekend to see if C can manage it. We have to be careful to pad the top of the tank, because it is sharp and could pierce the back of his head. We also need to make sure the pack is adequately padded because if an oxygen tank's neck is snapped, it will go off like a rocket.
If this solution works, however, the next step will be to negotiate with our insurance company and medical supply company to see if they'll allow us to get these much smaller oxygen tanks. And so it goes.
Fingers crossed, as always.