Two Years on Oxygen

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.

The Double Whammy

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.

The Trouble Bag

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.

Peter

When I was in middle school, there was a boy named Peter who was constantly being bullied. He was slight, with straight sandy blonde hair that framed large, dark eyes. He wore a navy blue puffy coat and backpack at all times, even in class, even in summer. The bounce in his walk was not happy but jerky. He was what we'd then describe as "slow," but in hindsight it's clear to me that Peter was somewhere on the autism spectrum. The only class I shared with Peter was a photography classes. He would try to keep to himself, but when the teacher was out of the room, some contingent of kids would begin their taunts. They'd yank his backpack off until it spilled its contents on the floor. A few girls would pretend to flirt with him only to end up ridiculing him in some terrible way. On one particularly sad occasion, a kid convinced Peter to eat photographic paper, which he promptly threw up.

Throughout it all, Peter was passive; he'd lower his head, look at the ground, shuffle his feet. Occasionally he'd yell in anger, but mostly he just took it. I only saw him cry once, and I remember the tears leaving streaks in the thin layer of grime on his face.

A few of us would try to defend Peter, and our efforts would usually result in a short reprieve. But sooner or later the bullies would be back at it, seemingly unable to resist the primal urge to torment this child who was just a little different from the rest of us.

As a father, I know that Peter probably had a family who loved him, a family who would have been devastated had they known what was happening to their son.

It's with an undiluted sense of sadness and horror that these memories come back to me now. I'd mostly put them out of my mind until I began to notice little similarities between Peter and my son, C. And lately I've been wondering what happened to Peter, what scars this treatment left on his seemingly gentle soul. If I'm honest, the images this conjecture generates are not particularly positive.

...

I will do whatever I can to protect C from facing the things Peter faced, but I know I can't be there all the time; like the middle school teacher, there will be times I have to step out of the room. This thought fills me with dread.

Fearful Questions

With our neurotypical child, we wonder about the things any parent might: What will he become? Where will his interests lie? Will he have special talents? The questions are boundless, like our hopes for his future.

With C, our questions are far more fundamental: Will he ever drive a car, hold a job, understand money, have friendships, experience a crush, play a sport?

But we rarely ask those questions, their contemplation being too overwhelming. Instead we focus on the smaller questions that lie in the near future, the questions whose answers we might actually be able to influence. And we hope.