An update to yesterday's post: after this morning's three-hour ABA session and one hour off O2, C's oxygen level was 80%. This is very low (read: not good). So, while his progress is positive overall, it's clear that any extra activity is still over-taxing his pulmonary system. Small steps, small steps.
Breathing Easier
On the advice of our pulmonologist, we've been taking C off oxygen for short periods every day, gradually increasing the duration of these O2-free periods. We're currently up to 60 minutes, after which we measure C's oxygen levels using a portable testing device.
His oxygen levels are holding steady at 98-100% each time we test. For perspective, that's how well an individual with very healthy lungs would do!
Our little jester is full of surprises.
And that, to me, is the real point. Whenever I get down, something happens to remind me how lucky I am, how great C is doing. Sure, he has strikes against him, but he has a resilient spirit.
My good friend Sean often says, "C is going to surprise us all, you watch." I believe he's right.
Brotherly Bonds
Though I only knew my younger brother for a very short time, I feel his presence in my life even now, nearly four decades later.
I was reflecting on this tonight as I was bathing C and M. While it sometimes seems as though autism has put a wall up between these boys, I know they share a bond unlike any other. They will have each other always.
Accepted
After months of searching, C has finally been accepted into a school for children with autism. This comes after being turned down by other schools that couldn't or wouldn't deal with his oxygen. (Yes, this is probably discrimination, especially since these schools collect taxpayer money, but we have neither the energy nor the appetite for a legal battle.)
The school is not far from our home; it has a great reputation; the staff seem terrific and caring; and, most of all, they weren't one bit hesitant about his being on oxygen.
While this should be cause for celebration, it comes with one reservation on our part: they want to put C into a class with children who seem to have even more significant challenges than he does. This made us question ourselves:
Is C's autism even more severe than we thought, or is the school simply erring on the side of caution by getting him into a more fundamental setting to see if he can progress from there?
Whatever the case, we're grateful to at last have some resolution with regard to where he might attend school next year. And, while I believe parents usually know best, there are times when you just have to put your trust in the expertise of others.
Something Magical Happened
Tonight something magical happened, something that has never occurred before: C played with another little boy.
In the waiting room at our pulmonologist's office, a boy approached C and started following him around, talking with him, listening to him. The two ran around, looking at things, laughing joyously, watching each other. They were playing! Not kind-of-sort-of interacting, like C does with other children — including his own twin — but playing, with abandon.
This is so rare, in fact, that my wife decided to film it, to prove that it's possible for C to have real friends, to enjoy children his own age.
This is huge.