From The Autism Trail Guide: Postcards from the Road Less Traveled (2007, Future Horizons)
I Sound Like My Mother – I Hope!
©2007 Ellen Notbohm. Please contact the author for permission to reproduce in any way, including re-posting on the Internet.
It sounds crazy, but I trained for the marathon of raising a child with autism.
I didn’t do it on purpose, of course. I did it in the course of playing the cards I drew. And that hand came with a wild card, who was also my King of Hearts: Connor, a child with textbook attention deficit/hyperactivity disorder. Emphasis on hyperactive. He dragged me on the roller coaster ride of my life, but when a sidecar called autism pulled up beside us, I realized that ADHD had been a walk in the park, a training run, for all that lay ahead of us as we stepped onto the spectrum. Hard to imagine being grateful for such experience, but I was.
A child with undiagnosed, untreated ADHD can be a taxing proposition for even the best of preschool teachers juggling an entire class full of 4-year-old needs. Despite an excellent teacher, pre-K was rough for Connor. But as he came into his kindergarten year, we were fortunate enough to land both the right doctor and the right teacher. The doctor, a developmental pediatrician, told him: “You are a fast, powerful, shiny black locomotive – with no brakes. We are going to get you some brakes. Remember that having no brakes doesn’t mean that train is a bad train. It simply doesn’t have the right parts, and we are going to get you those parts.”
The teacher’s concern was more global. She felt that he has been beaten down by the relentless cycle of adults and even peers trying to corral his no-brakes behavior. “You’d better take them just as they come to you or you will not make it in this job!” was her stated philosophy, and she was a 23-year veteran of taking them as they came. Even so, and even as Connor perplexed and challenged her, she cared about him deeply and ultimately steered us to the course that we followed into grade school and beyond. It began with her telling us: “This year is about my re-building his self-esteem. I do not care about his academics. Clearly, he is bright and that will come. What he needs most is to go into first grade feeling good about himself.”
Her lesson, that self-esteem had every bit as much to do with achievement as did “brains,” was top of mind when it came time to face down the challenges of Bryce’s autism. I weighed the impact of nearly every word I said to him, considered how it be heard by him. It wasn’t easy to do this in the heat of confrontational or in despairing moments. But oh, how worth-it it was. No child comes through youth completely unscathed by the biting or thoughtless remarks of their peers. But Bryce’s self-confidence has made it possible for him to weather unkindnesses with reactions such as: “Well, kids who think they know everything don’t know that they don’t,” and “They are immature and still learning” and the Advice for All Time, “I just don’t listen.” More on this in a minute.
Having poured copious effort into attempting to flame-proof my kids against the sticks and stones of words that could hurt them, I was greatly appalled when, one cozy winter day, I was browsing through a well-known parenting magazine and came across a terribly unfunny essay entitled I Sound Like My Mother. “Remember all those annoying phrases you promised you’d never repeat to your child? How many did you say today?” this article brayed. The infamous list started off with “Because I said so, that’s why,” moved on to “Stop crying before I give you something to really cry about,” droned away and finished big with “Do as I say, not as I do.” There was more, much more, but I think you get the picture.
I realized that I could never repeat those phrases because my mother never uttered a one of them. Neither have I, and it’s not because my children have never danced on my third nerve. They are the Fred Astaires of that. It’s more that I couldn’t bring myself to speak to the people I loved best in so mean and disrespectful a manner. “This hurts me more than it hurts you.” Then what’s the point?
I showed the article to my mother to get her reaction. She barely deigned to offer one. “These are clichés,” she said. “Do people really say these things?”
Apparently, I replied.
“Why would anyone say these things to their children? I never needed to.”
That’s not quite true. She never chose to. My brothers and I were thoroughly typical children and she certainly could have found reason to say these things had she wanted to.
That is not to say that my mother didn’t spout doozies of her own that have indeed popped out of my own mouth unexpectedly. “Don’t stick your elbow out too far, or it may go home in another car.” “If you eat too much watermelon you will turn into one.” These are, of course, things you should never, ever say to a child with autism lest the visual association he creates keep him awake and screaming for weeks.
But my mother espoused her own brand of wisdom, and as it turns out, it is just right – and then some – for raising, respecting and nurturing a child with autism. Not only am I grateful as a daughter for her example to me, but even more grateful that my children had her steady presence and life-celebrating attitude as they grew up. I know she is not the only grandmother who has brought the gifts of patient insight and a wellspring of compassionate concern to her grandchild with autism. My mail frequently bears provocative messages from grandmothers of children with autism. Their questions are sometimes anguished but almost always the right ones. They are startling clear-eyed, free of denial; they are non-judgmental. Love for their grandchild shines through, as does their pride in what the child has already accomplished against such odds. I find myself wondering if they subscribe to the same special brand of perspective on life as my mother, the same recurring pearls of wisdom for which I am most grateful:
“Life is too short to be little.” This powerful statement is attributed to English Prime Minister Benjamin Disraeli. My grandmother espoused it at every turn and my mother carried on that tradition. French novelist Andre Maurois elaborated on it: “Often we allow ourselves to be upset by small things that we should despise and forget. Here we are on this earth, with only a few more decades to live, and we lose many irreplaceable hours brooding over grievances that, in a year’s time, will be forgotten by us and by everybody. No, let us devote our lives to worthwhile actions and feelings, to great thoughts, real affections, and enduring undertakings. For life is too short to be little.”
Disraeli won’t mind if I take this sentiment one step further: Life is too short to (fill in the blank). Life is too short to grieve for what you don’t have rather than celebrating what you do have. Life is too short to spend time wishing you could undo or relive the past, or to refuse to explore the future for fear afraid of what it might bring. Because . . .
“It’s best not to dwell on the might-have-beens.” The poet John Greenleaf Whittier embodied this philosophy with his famous line, “For all sad words of tongue and pen, the saddest are these: ‘It might have been.’” The twin exercises of this philosophy, as practiced religiously by my mother, are counting your blessings and keeping your focus forward-looking. It works. I am so much happier and better able to cope with life’s curve balls when I remember to do this. It’s quite magical how it squeezes bitterness and regret right out of your consciousness.
“We do the best we can with what we’ve got.” This Teddy Roosevelt gem is a wonderful, graceful way of saying we never shirk or make excuses for what we need to do. But we also know when to cut ourselves some slack and we know where to back off those infernal perfectionist standards we sometimes impose on ourselves. “Courage doesn’t always roar,” states my favorite mantra. “Sometimes courage is that small voice at the end of the day saying, ‘I will try again tomorrow.’”
“It’s better to have it and not need it than to need it and not have it.” Mom said this a lot, whether it was to take along a sweater to the evening ball game or an extra swimsuit on the vacation. As a kid, I simply hated hearing it; I usually didn’t want to make the effort to take along the ‘it,’ but she was so inarguably right.
And it is a superb mission-control strategy for traversing life’s terrain with a child with autism. Getting into the habit of contingency planning for Situations A, B, C, D and E has saved me and my child untold amounts of stress and time lost to damage control. If it meant we lugged more gear, traveled with stopwatch precision and thought in patterns of nonstop what-ifs, at least we seldom didn’t have It when we needed It.
“You have two ears. Let it go in one and out the other.” This great piece of advice for dealing with cranks, grouches, teases, loudmouths, dolts and other irritants came directly from Mom’s father, who had the revered reputation among family and friends as being a peacemaker. I won’t say it’s easy, but it’s sage counsel for those detestable moments when some uninformed, unmannerly stranger (or relative) sees fit to let you know how poorly they judge your ability to deal with your distraught, disintegrating, sensory-overloaded child. Zingy retorts and dirty looks are OK with me if you have a ready arsenal of them. I admit I once held up three fingers and told a very nosy lady to “read between the lines.” But I like more the serenity you get from knowing, really knowing, that you are doing the best that can be done with your child at that moment, and that you and you alone are the one to make that determination.
And when I feel my fists ball up, at least figuratively, in stifled desire to flatten the kid who calls my son stupid or weird, I have to take my cue from him, to again marvel at his above-it-all response: “I know I’m not stupid. I just don’t listen.” And I am forced to wonder if the ability to do this hereditary.
“If God intended women to camp, He would have equipped them with the same gadgetry he gave men.” OK, I had throw this one in. My mother was raised a city girl. This woman hiked North America with my father from Denali to New Mexico to Nova Scotia but when the sun sank low, any camping to be done was Hilton-style. Dad had a 37-year career in the Army and the US Forest Service, spending many summers in remote enclaves of the National Forests of the Pacific Northwest. He loved being in the woods, but he knew that in marrying my mother, he was getting a gal with a finite outdoor comfort zone. He considered it was an acceptable compromise for the pleasure of her company and they had many wonderful outdoor experiences, just none that involved tents and sleeping bags. Looking back, it was a great lesson for me in gracefully accommodating a beloved child whose preferences were distinctly limited. For many of our early years with Bryce, he mightily preferred his own bed to any other sleeping arrangements, and that limited our family travel. But in time he became much more of an adventurer than me. I’m my mother’s daughter. Each summer I stay home to write while my boys all go camping together.
I can only imagine what my children will say in years hence when they reflect on what their mother sounded like. But truly, I did the best I could with what I had! And if ever anyone flips me the epithet, “You sound like your mother,” you can be sure my response will be, I hope so! Oh, I do hope so.
© 2009 Ellen Notbohm | Four-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on teaching and raising children with autism. For book excerpts, to contact Ellen or explore her work, please visit www.ellennotbohm.com.