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Postcards from the Road Less Traveled

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Postcards from the Road Less Traveled

By Ellen Notbohm
Autism Asperger’s Digest  September/October 2014

Two roads diverged in a wood, and I—I took the one less traveled by, And that has made all the difference. ~Robert Frost

While I tend to define my life more in moments than milestones, this month marks a noteworthy anniversary—ten years since I wrote my first column for Autism Asperger’s Digest. Our family has grown through a mind-bending amount of change since then and yet, when I look back on that first column, it is timeless, as if I wrote it yesterday. Hundreds of thousands of children with autism have been born since that first column so a rerun here, where it all began, seems fitting. Some passages made their way into the opening pages of my book, Ten Things Every Child with Autism Wishes You Knew, and thus may sound familiar to some of you. Like an old friend, I hope.

It’s 1999. At the school assembly, adorable first graders, one after another, step to the microphone to answer the question: what would you like to be in the new millennium? Soccer star! is one popular response. Pop singer! Race car driver! Cartoon artist, veterinarian, firefighter!

My son Bryce has considered the question carefully: “I think I’d just like to be a grown-up.”

Applause breaks out and the principal speaks deliberately. “The world would be a better place,” he says, “if more people aspired to what Bryce aspires to.”

That moment was one of countless historical markers we’ve recorded along our Road Less Traveled. When the editor of Autism Asperger’s Digest and I debated names for this column, we solicited input from a range of readers. I thought the connection to Robert Frost’s poem very apt, but one reader disagreed: “Postcards are from people who are having a good time on a trip. I’m not sure if that’s what you want to portray.”

In my family, postcards are so much more. They let loved ones know you’ve arrived at a certain place safely. They say “I am thinking of you even though I am far away.” They give that someone far away a visual of what you are seeing and experiencing so they can be with you across the distance. They may recount trip-related woes and how you resolved them, hopefully with a bit of humor.

So my answer to that reader is yes, that is exactly what I want to portray. I am having a good time on this trip. The hope and the possibility and the how-to of this journey is what I want to share with you. Because we did not start out from there.

We started with a basically sweet-tempered but nonverbal child who would lapse into baffling episodes of hair-tearing, cat-scratching, furniture-throwing violence. Who wore clothes only when socially necessary and who physically backed away from many classroom and playtime activities with his hands over his ears. Who laughed at all the wrong times and didn’t seem to experience pain or cold in a typical way.

Bryce was identified with autism by our school district’s early intervention team at the age of 3½. I went through the five stages of grief in the time it took to end the initial meeting. My older son had been identified two years earlier with ADHD. I already knew about the therapies, the social challenges, the never-ending vigilance.

The exhaustion.

Thoughts about Bryce’s future flooded my mind. I could not bear to imagine his fate as an adult if I did not do everything within my power, starting immediately, to equip him to live in a world where I would not always be around. Words like “prison” and “homeless” would not leave me alone. Not for a nanosecond did it occur to me to leave his future to “the professionals” or to the ephemeral idea that “he might outgrow it.” That was a risk I absolutely was not willing to take. With his very quality of life at stake, failure was simply not an option. These are some of the convictions that drove me to take the actions I did.

Here’s the gist of what I know to be true. Your child’s autism does not mean that he, you and your family will not lead full, joyous meaningful lives. You may be scared, but dare yourself to believe this…with a caveat. How much of that full measure we achieve with our kids is greatly dependent upon the choices we make for and about them given their individuality and uncommon character. A memorable passage from Nora Ephron’s Heartburn has the protagonist declaring what happens when “The dream dies. The dream breaks into a million tiny little pieces. Which leaves you with a choice: you can either stick with it, which is unbearable, or you can just go off and dream another dream.” In future columns, we will define and pursue those new dreams, explore the roads that lead us there, and equip ourselves with the very best tools of our trade.

We’ll root around in my tool shed. It’s stocked with trial-and-error, the wisdom of others who know more than me, some well-chosen mantras and the most effective tool of all: common sense. It’s cheap, accessible and it works. I’ll help you hone your “If A, then B” thinking. We’ll toss aside society’s typically accepted developmental timelines and embrace the one that works for your child. Yes, she will read, ride a bike, say I love you—but on her own, equally thrilling terms. When Plan A doesn’t work, I’ll suggest creative ways you can find satisfaction and fun in Plan B: He can’t handle restaurants? We’ve picnicked on the floor in just about every room in our house—and now prefer it! The food actually tastes better without the anxiety.

And we will take time to honor and nurture ourselves for the admirable job we’re doing. I still beat myself up horribly when I get it wrong, and have learned that my son is far more resilient and forgiving than I give him credit for. Maybe you can help me get past that part.

Bryce entered middle school with the designation “overachiever” bestowed upon him by his principal and teachers. How he got there can be boiled down to three facets:

1. He is loved, utterly and unconditionally, by his family and throughout elementary school by his educational team as well. This was a team who viewed Bryce’s autism, as did we, as a different ability rather than a disability.

Giving him this unqualified validation of self was the single most important thing we ever did for him. It gave him wings, and gave me the stamina to seek and discover and rejoice and get back up when I stumbled. It meant banishing thoughts like, “If he would just…” and “Why can’t he…”

It is possible to move forward without looking back. It is monumentally difficult and it is monumentally worth it. The job becomes easier and delight in your child emerges when you make the commitment to play the hand you are dealt without bitterness and with the absolute belief that gifts you never dreamed of are just ahead. The journey through autism is an ever-evolving process, a long, long race with no finish line. This is both good and bad, depending on the day. On a good day, it means that there is much time to work toward that goal of Self-Sufficient Adult. On a bad day it means that life is to be lived not one day at a time, not even one hour at a time, but one moment at a time.

2. I fanatically believe that sensory integration therapy is the most critical intervention of all; without it, everything else will be somewhere between difficult and impossible. It’s hard to see how any significant cognitive and social learning can even begin for a child for whom the very world around him is too loud, too bright, too abrasive, too bitter, too invasive. He may appear withdrawn or belligerent, but his reality is that he is forced to live in a constant state of self-defense. Only when these barriers are addressed, accommodated, reduced or vanquished can she feel comfortable enough in her own skin to begin real learning.

I know this because, after seven years of concentrated sensory intervention, Bryce was dismissed from both the occupational therapy program and the adaptive PE program, the assessments showing that his skills in these areas were no longer distinguishable from his typically-developing peers.

3. Speech/language therapy goes hand in hand with sensory integration in opening the door to learning and to the world at large. It isn’t that Bryce wouldn’t listen to instructions; it’s that he couldn’t understand them. When called to from across the room, he would hear: “*&^%$#@, Bryce. #$%^*&*………” But if spoken to directly with eye contact (“Please put your book in your desk, Bryce. It’s time to go to lunch.”), he became a model of cooperation and achievement. It was as simple as knowing what to do and what was going to happen next. Patient communication in plain language made all the difference.

Bryce’s successes are firmly rooted in that solid sense of self-esteem, his hard-won comfort with his physical environment and his ever-expanding ability to express himself. With those three pieces in place, social and cognitive learning followed. As his life became easier, so did mine. Each passing year brought deeply gratifying triumphs. The day he swam to a trophy finish in a city-wide swim meet. The day he sang and danced his way through Charlie and the Chocolate Factory as Grandpa Joe. The day he rode his two-wheeler for the first time and the time we worried no one would come to his birthday party and 40 people showed up. His elation at making it through his first Scout campout and his utter euphoria after successfully working up the nerve to ask his lady-love-since-kindergarten to dance at the sock hop.

And the truth is, in time I came to realize that I would not change him even if I could. Wouldn’t take his autism away. Wouldn’t have him be anything other than exactly what he was.

“I think I’d just like to be a grown-up.” He’s well on his way. “Bryce is the hardest working, most on-task student I have ever had,” his resource-center teacher told me, this after teaching around the world for over 30 years.

We held naming ceremonies for both of our sons shortly after their births. They were happy occasions during which everything seemed possible for our child(ren), and we could never have imagined how prescient these words would be:

“Give your child unconditional love, a love that is not dependent on report cards, clean hands or popularity. Give your child a sense of your whole-hearted acceptance, acceptance of his human frailties as well as his abilities and virtues.

Give him a sense of truth; make him aware of himself as a citizen of the universe in which there are many obstacles as well as fulfillments. These are the laws of honoring your child.”

We did that. And along the road less traveled, it has made all the difference.

Editor’s Note: This column was originally published in the September/October 2004 issue of Autism Asperger’s Digest. Our thanks to Ellen for ten years of fantastic columns!

Bio
Ellen Notbohm is author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew, and three other award-winning books. Her work inspires and delights millions worldwide in more than twenty languages. She contributes to numerous publications, websites, classrooms and conferences worldwide. www.ellennotbohm.com

Copyright © Autism Asperger’s Digest. 2014. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.


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