May 19, 2010

Habit for Humanity

Posted in My Take on Autism tagged , , , at 9:58 am by autismmommytherapist

I yelled at the man from the Diabetes Foundation yesterday.

It is generally not my habit to raise my voice to people even if they’re soliciting money from me, but yesterday, I’d had it. For three weeks they’d been calling two-to-three times a day, with a sneaky caller ID name that my husband was able through the wonders of the Internet to smoke out, and I’d ignored every ringing interruption until yesterday. I was expecting my mom to call me back after a faulty connection, so I didn’t look at the phone when I answered it, and got diabetes man instead of the woman who gave birth to me. I started off politely, informing him that I have two children on the autism spectrum, and all of our surplus funds are directed toward autism research, and I wished him luck with his endeavors. Before I could hang up, he interjected in what I decided was a “snotty” tone that he didn’t require our money. He just needed me to write fourteen letters to people and ask them for their money.

I should have taken a deep breath, counted to ten, or summoned my Clooney place, but I didn’t. Instead, after I finished wondering why I had to write exactly fourteen letters, I yelled at the man who was probably volunteering his precious time for a worthy cause. I told him I didn’t have time to go to the bathroom these days, much less write letters to anybody, and if I did, I’d be asking them for autism funding. I told him he should be phone-stalking families without disabled children, and to please take us off their calling list. Then I hung up. I’m not proud of my behavior.

I’ve also recently taken the Lord’s name in vain when my round the corner neighbor decided it was kosher to let her three bear-dogs run unleashed to her car, cornering me against the bumper of an old Volvo as I tried not to wet myself. My final recent act in my trilogy of rage was when I screamed at a teenager who almost rear-ended me at a stoplight, her attention diverted by her lap, from which I’m certain she was texting some fabulous boy. For that one I waited for the light to turn green, rolled down my window, pointed at her and screamed “Stop texting, you almost hit us, my child is in the car. MY CHILD!”. I held up at least a dozen cars for about ten seconds, a lifetime at a traffic light. I watched her face crumple and her companion slump into her seat, and I was glad. Of that incident, I am proud.

By the way, not a single car beeped at me to move. Not one.

I used to be a much nicer person, a kinder, gentler soul. I am the first-born daughter and oldest grandchild on either side of my family tree, and as such, I inherently felt it was my duty to be responsible and follow any rules imposed upon me. The first third of my childhood I was enveloped in affection, as we lived with one set of grandparents, plus an aunt and an uncle, and saw the other side of the family at least two-or-three times a month. I held the throne of only grandchild for four years, and was spoiled relentlessly in my singular monarchy. Due to the vast quantities of unconditional love I experienced as a youth I had a fairly well-developed sense of self, an attitude that would carry me through the garden variety tough times that every school child experiences sooner or later. I remember complaining once to my grandma about a mean girl (there is always, eventually, a mean girl), and she responded that instead of thinking of myself I should feel pity for her, because clearly her daddy didn’t love her enough, and she was just trying to get attention any way she could. The explanation didn’t make much sense to me at the time, but now, as I see everything through the lens of a behaviorist, it makes perfect sense to me.

My grandma was an elementary school teacher. Apparently you don’t require a psych degree to discern motivation.

So for the longest time I didn’t really feel rage if things didn’t go well in my life, if a boy thing didn’t work out, or a job fell through, or my favorite American Idol contestant got voted off too soon for picking a song his granny really liked instead of singing the tune that was actually appropriate. I handled things. I worked them through. I was a nice girl.

Not anymore.

I guess my capacity for rage began when my husband and I began fighting the fertility wars. I clearly remember being enraged that idiots all around us were procreating, leaving kids in oven-like cars overnight, abandoning them, putting them on that TV show where the kids ran the town (remember that train wreck of a show?), and we couldn’t even muster up one tiny baby. We weren’t ancient, were decent people, and were probably the only couple our age in America who had never done drugs (on my part it wasn’t about being noble, I was simply convinced I’d take one toke of pot and be hooked on crack by week’s end). I can clearly remember most of my anger was fueled by one single thought. This isn’t fair.

This concept of fair followed me after the diagnosis of autism of my own firstborn child, was the underlying thread that fueled my anger in those initial days. I’d followed all the rules, both written and unwritten, in order to gestate him healthily during his nine month hiatus in my womb. I’d attended the classes, breastfed even though it was torture (in medieval times if I hadn’t been of a noble class and able to hire a wet-nurse, my kids would have starved to death). My husband was a good man, paid our taxes, even did his own laundry. We were nice people. We would be good parents. It wasn’t fair.

By the time our youngest child was diagnosed (which you’d think would be easier the second time around – it wasn’t), I was still clinging tenaciously to the concept of fair. I still didn’t get it. I wrapped myself in rage, railing that if there’s anything to past lives theory I must have been Hitler AND Mussolini all rolled into one to have incurred such universal wrath. At least in our version of autism, initially my children suffered, and suffered greatly, physically, developmentally, and emotionally. They were good boys. Again, it just wasn’t fair.

Then one day I had one of those realizations, those fleeting “aha” moments that grace our presence all too infrequently. Nothing precipitated it, no cosmic event, no phenomenal quote from an enlightened author. Oprah didn’t tell me to feel this way. It just happened. I realized that my rage, my wrath, the anger that energized me to fight for my kids, to stand up for their rights in school and in the community, was actually a good thing. My idea that things had to be fair, my hope that they would be, was not. “Fair” was tangled up in the rage, preventing it from doing its work, running its course, and eventually being discarded. Holding onto “fair” was preventing me, if even for a moment, to focus on what needed to be done for my boys, from tweaking an IEP to teaching my son to use the potty. Rage can be channeled, employed for a greater good. Searching for “fair” is a useless endeavor, counterproductive to progress. “Fair” was slowing me down. I had to let it go.

It’s a hard habit to break, but I try every day to remember that there are families across this continent, with or without disabled kids, who would kill to have what I have. There is, in almost every case, someone who endures a tougher situation. I attempt to recall this when I am most frustrated, and will particularly have to channel this outlook if that rogue satellite screws up the final “Lost” transmission and I’m forced to watch it on my computer. There will be an extra glass of wine in that scenario, and I’ll just have to repeat my own self-made mantra.

There is no fair. There’s just what is.