Choosing a Cause

When Braden was an infant, I was a stay-at-home mom. I worked at a daycare up until the day I delivered him, and we just couldn't see me putting him in a facility so I could go to work in another. There were, of course, a few other factors, but that was the big one.

For a time I watched two children in their home, and took B there with me. That situation wasn't great either, and we decided that my place was with him. My husband was in a good place with work, and I was starting to get the itch to go back to college. I enjoyed being home with him. Life was so simple then. I really had no idea how good those days were.

With all that time to think, I remember deciding that I wanted a positive way to give back to the world. I'd always been taught to give of myself; I had a very religious upbringing, and my mom and step-dad always volunteered through our church. It made perfect sense that as I built my adult life, I should do the same. With all that 20/20 hindsight, I can say that I wanted to prove that I was a responsible adult and that seemed like a good place to start (compensating for the fact that I'd become a 21-year old unwed mother).

I had stopped attending church as my high school years ended and my parents' marriage fell apart. So I'd need to choose a cause. I decided that I would do a breast cancer walk.

My step-mother's mother had recently undergone treatment for breast cancer. She was in remission and doing well. I didn't know anyone else who had been touched by the disease. In fact, I didn't really even know her. But as a young woman, it was one that made me feel at-risk.

The walk I found was at a zoo near my dad's house, and it turned out to be a great excuse to see them. We pushed my step-brother and my son (they're only 10 months apart!) around the zoo and had a great time. I may have even learned a factoid or two about breast cancer.

By the time the walk came around the next year, we were knee-deep in appointments and evaluations searching for reasons why our sweet boy wasn't talking. He was now 26-months old, and his developmental train seemed to have jumped the track. Being responsible had taken on new meaning, and I didn't have time or energy to give of myself outside our family's four walls.

Fast forward to present. Still wanting to find ways to give back, I have worked in the non-profit field off and on since 2006. Non-profit work can be very rewarding, but it is very demanding. Human resources often compensate (or are expected to compensate) for a shortage of financial resources. I have left those positions voluntarily, but with my proverbial tail between my legs.

In the last few months, it's finally clicked for me why those jobs didn't work out. They were all cause-driven, and as much as I would like to I just don't have any more of myself to give. Autism didn't ask permission, it just weaseled it's way into our lives and demanded that I give it all of me.

When I was younger, I thought I could choose a cause and be on my way toward a life of social responsibility. I was too naive to realize that it is a very special, and very fortunate, person who can commit to a movement solely out of agreement with it's end. Humans are inherently self-serving.

Building on that idea, Gahndi is credited with saying, "Be the change you wish to see in the world." I would love to see breast cancer - all cancer for that matter - eradicated. But not more than I want my son to grow and thrive. And not more than I want to see ASD give my baby a day off from it's oppressive hold on him. Why? Because I'm human, therefore self-serving. Because I'm a mom. Because (and here's the part where for once I'll let myself off the hook) my cause found me.

Expert Opinions

It's not uncommon for us to screen our calls. We do it for a million reasons (not the least of those that we're a scosche anti-social). But there is one call I always have to answer - Braden's school. When I see that number, my heart drops.

As is the case for most parents, calls from school are generally bad news. Someone is sick or sometimes hurt or in trouble. The teacher B has this year (and had over the past summer) sometimes calls just to say, "Braden had a great day!" or "He's really making progress with..." I really enjoy that. But today was not one of those calls.

Last week the two of us had discussed changing the action plan for when B gets aggressive. He'd had two bruises on his arm since the beginning of the school year (that looked an awful lot like thumbprints). Did I think he was being abused? No. Did I think it was acceptable for my child to come home with marks on his body? No. That's kind of the gray area I live in...smack in the middle of irreconcilable truths.

We decided that the children around him who were (at least in theory) not agitated and more easily re-directed should be moved to safety, rather than trying to intervene and remove him from his current spot. Today he decided to give his teacher a run for her money in the first full week of implementing the plan. Why? Because he had to come in from recess.

For those of you who have never had the pleasure of a 'tism meltdown, think toddler on steroids. He managed to kick another student, and that brings us back to student safety. I'm a reasonable woman, and I know that one student's safety can't trump that of the others.

So the million dollar question is what do we do? It's one that I've been asked countless times over the past several years. It's one that I've researched into the wee hours of the morning. It's one that we've thrown best practices at and still not emerged with a viable solution that sticks. It's one that our insurance company spent big bucks on funding crisis stabilization at an inpatient treatment center that took B in for a "5-7 day" stay but sent him home after more than 30 with the expert opinion that "if you agitate his comfort level, you'll get the negative behavior."

Yep, you read it right. So if he's asked to do something he doesn't want to do, or to not do something he wants to, we're out of luck. He's going to get angry and more than likely, he's going to get aggressive. Our Community Mental Health social worker has assured us that many people "have it worse." I'm certain that is true, though I'm not sure what that matters. No one has a good solution for managing his behaviors, and that's incredibly frustrating for all of us.

For now, we decided to go back to removing Braden from the situation by leading him away by the hand instead of using any type of restraint. Is it a solution? Not really. At least it buys me time in between phone calls.

My Blog, My Rules

One of Garret's first homework assignments of this year was to cover a composition notebook with pictures/stickers/words/etc. that represent him. The book will serve as his writer's journal for this school year. I told him I have several writer's journals from my college days. We had quite a good conversation, and he asked if he could see them.

I went digging in the attic, and I finally found them in the basement. Upon further review, they're not really appropriate for sharing with a seven-year old. Reading them really got my writer's blood pumping, though and it got me thinking that I can break up my blah-blah-blog about family life and ASD with some creative pieces. My blog, my rules. Beautiful!

The first thing I though when I re-read this one is that it needs some editing. Still, I like where I was headed with it. This piece was published in our campus literary magazine, "Cardinal Sins." I only submitted for publication once (because of my aforementioned complete lack of self-confidence). Two of the three pieces I submitted were published that semester, and you know what the old song says...two out of three ain't bad.

Legacy

The canon is full of loose cannons--

tortured souls

whose ability to express themselves in writing

could pleasure the stable mind

but never pacify their own.

Slaves to their demons--

marked by melancholy and madness--

Annabel Lee haunted Eddy

until he found rest

face down in a gutter

and Sylvia chased perfection

headfirst into the range.

And me?

You'll just have to wait and see.