Trains, planes and automobiles: my version of lions, tigers and bears –oh my! Some of my most challenging experiences with my special needs child were when he was young and I had to cart him along on a two-hour airplane trip or even a 15-minute bus ride. Sitting quietly and watching the landscape go by just wasn’t his cup of tea; he had to move. And when he couldn’t move, he let you and everyone else know it. Our worst trip ever started out nicely enough on a scenic train ride from Williams, Arizona, to the Grand Canyon. Patches of snow, foreign and exotic to my Southern California kid, dotted the terrain. For the first 10 minutes, his breath fogged the window. But soon he had to walk the aisles, and as he did, he swayed along with the vintage car, his smile growing larger with every banshee scream of the wheels. When we reached the canyon, a relative herded us onto a sightseeing bus trip of the canyon’s rim, despite a nagging inner voice that warned me not to push our son. The bus was cramped; the seats small. He had no clear aisle to walk along. He whined and climbed the seats. In no time at all, he screamed. Halfway through the ride, a young couple left the bus, but not before taking a loud and public parting shot at me and my “bratty kid.”
I don’t always know what to say to people who don’t understand what it’s like to have children like ours. I once made a habit of flinging my son’s diagnosis like a weapon at the people who, with their judgments, angered me. But flinging a diagnosis like a knife and hoping it hurts isn’t helpful.
I bring up the subject of this nightmare trip because I didn’t listen to my inner voice advising of trouble before it began. Why is it that we don’t always listen to our intuition? Isn’t my intuition smarter than my head is ever going to be?
I trust my inner sense of how to best raise my special needs child. My inner sense is not the yapping, yapping, yapping of monkey mind as it screeches out its hates and the sins it sees surrounding us. Monkey mind is always accusing, raucous and pointing among the treetops. Instead, I let my mind sink down to the forest floor with its blanket of soft pine needles, like a fragrant cushion to absorb the sounds.
I drink in the silence and practice listening to my inner sense.
When my father died, my brother spoke briefly at the memorial service. My brother manipulates numbers and chemical equations; he understands the physics of how balls spin and why an object in flight might soar, on the one hand, or why it might tumble out of the sky, on the other. He is a scientist by trade, not a writer, or so we thought. He summed up a father we loved and shared in simple, honest terms. He said: “Kindness is as kindness does.” And that was my father.
Today, I practice being kind, to my special needs child, to my family, and to myself. Being prepared for the day or for the IEP meeting is a way of being kind. Kindness doesn’t mean allowing others to walk over my child or me; that wouldn’t be kind to any of us. Kindness can be a gentle assertiveness, a vow to be an informed and educated participant. Kindness is an attitude that walks with me throughout the day and brings me safely home.
Often, when my family is having a trying day, I’ve found that merely changing the scenery can completely alter the atmosphere between my children and me. Just picking up the towels and hitting the local pool for 45 minutes or grabbing a hamburger and eating it in the park can dispel a thick fog of tension the way the sun breaks through the cloudy marine layer where I live. Meditation can be a way of changing one’s inner scenery, a way of letting the silence burn away the day.
Today, I close my eyes and concentrate on the sound of my own breathing.
Lindbergh, Anne Morrow. Gift from the Sea. New York: Vintage Books. 1975.
In her debut novel for young adults, Stop Pretending: What Happened When my Big Sister Went Crazy, the poet Sonya Sones tells a story that begins one Christmas Eve when her sister, “a wild-eyed Jewish girl wearing only a nightgown,” runs out the door to attend Midnight Mass. Her family goes from swinging in a hammock on a moonlit beach, together as one, to a family where the parents break down and become strangers to Sones almost overnight.
The parents of mentally ill children are the forgotten special needs parents because their children often have typical intelligence and because mental illness is still not openly discussed in our society. Parents are often blamed for their children’s behavior, and families hide their challenges behind closed doors. The experience parenting the schizophrenic teenager or the manic depressive pre-teen is anything but typical. Sones had a front-row seat to all of it: her sister’s mental breakdown, her parents’ inability at first to cope, endless therapy sessions and hospital visits, her sister’s growth, her sister’s regression, and finally some measure of healing and family progress. It’s a beautiful, if sometimes sad, story told in poetry, and I highly recommend the book.
When parents receive an initial diagnosis about a child, whether one of mental illness or physical or learning disability, they can fall into a period of lamenting what should have been. But “what should be” is only an idea. To fail “what should be” is to fail an idea. Your child cannot fail where they are now, they can only fail your idea of where you think they should be now. Why hang onto an idea that brings only sorrow? How does that let you move forward?
I can only start with my child where he is now, in a sense of what is happening at this moment. I cannot join with anyone on the shifting ground of “what should be.” My idea of “what should be” brings me only pain, so I elect to change my idea. I elect to be with my child in the present. I know that we can both move forward when we are ready. I practice sitting quietly among what is.
Sones, Sonya. Stop Pretending: What Happened When My Big Sister Went Crazy. New York: HarperCollins. 1999.
In the movie Bagger Vance, golf is used as a metaphor for life—a game that can’t be won only played. Amateur golfer Rannulph Junah returns from World War I a hero who is unable to face a hero’s welcome home, having lost his whole company in battle; broken, reclusive and deeply disturbed by his experiences on the battlefield, he loses himself in alcohol. Junah is unable to rebuild his life until he confronts his inner demon: he feels responsible for the deaths of his men. His golf caddy, Bagger Vance, tells Junah: “There isn’t a soul on this entire earth that ain’t got a burden to carry he don’t understand. You ain’t alone in that. But you been carrying this one long enough.” I think special needs parents sometimes blame themselves for things that are beyond their control, or they take personally the critical opinions of other parents who have typical children (and no idea of what it’s like to be in our shoes). We can end up feeling guilty or inadequate. These judgments make us miserable, but we can lay them down at any time.
Although I am a careful teacher with my special needs child, I am not responsible for everything that happens to him. Nor am I responsible for everything my child says or does. My child is his own person with his own mind, and we’ve been put on this playing field of our lives to finish this game together as best we can. It’s not about keeping the score—it’s about playing the game well and with kindness and dignity. Today, I lay down my judgments of myself and others.
Bagger Vance. Robert Redford. Perf. Will Smith, Matt Damon, Charlize Theron. DreamWorks Pictures, 2000. Film.
Pressfield, Steven. “The Legend of Bagger Vance.” New York: Avon Books. 1995.
What does it mean to persevere? Does it mean to slog through something, like a marathon, bedraggled and tired to the bone, but going on nonetheless? Does it mean to break through, against enormous odds, to the other side of something big? To shout, “I did it!” whatever it was? Can a notion of acceptance sit side-by-side with perseverance, or are we resigned to the idea of struggle against which we measure the idea of “to persevere?” If we let go of the idea of struggle, accepting completely where we are in this moment, then we have nothing left against which we must persevere. And for a moment perhaps, we can feel lighter in mind and heart.
I sit quietly and try to empty my mind of all thoughts of what is “good” and what is “bad.” For the next 10 minutes I can allow myself a break from thoughts of struggle or strain. Those thoughts will likely still be with me when I return, so why not take a short vacation? For 10 minutes I sit in silence and imagine I am alone in the dark watching the meteors streak across the night sky.
Run loud, fun maker,
Cyclone, spiral, climb and zoom!
Clitter, clatter wee mad hatter.
Days deluged by splitter-splatter.
Now to ponder in delight
His next maneuver—
Winsome waddler of this day,
May you all tomorrows play.
Run loud, rampager, tiny man.
Keep star grabbing all you can.
Watchers watching ever we,
Your grand old grand daddy. And me.
“Watchers” is one grandmother’s poetic interpretation of life with her active grandchild. Can’t you just see the “splitter splatter” on the walls in this love poem? Can you feel her affection for this tiny, rampaging man? “Cyclone, spiral, climb and zoom.” What special needs parent hasn’t had a day like that? But did you laugh? Did you see the joy in the mess or did you just see the mess?
Today, I take a few minutes to play with my special needs child. Laughing together is an intoxicating elixir. Laughing together is the best therapy possible.
Each day it is important to take time for yourself. Think about how you can escape for five minutes even if it means placing the children in front of a television show or on the phone with your spouse, family member or good friend. Maintaining balance and taking care of yourself is the only way that you can maintain your effectiveness as a parent. My favorite escape begins with a cup of fruit and almond tea. My family knows that when they see me make a cup of tea, I will escape for five to ten minutes to be alone with just my thoughts.