|Issue No. 22, June 2009
Earlier this year, my family observed the 10th anniversary of my father’s last birthday. He spent his last Father’s Day at my son Connor’s Little League game. No one could have known that it was his last Father’s Day, but even if we had, I think he possible he would have chosen to spend it at the game anyway. Dad and Connor were big baseball buddies.
I wrote about my father’s last birthday on my Facebook page, a column that drew many and varied reactions from joy to regret to admiration to plain old nostalgia. A non-Facebooker asked that I re-run the column here, and I am happy to do it.
Ten years ago in February my father observed what would be his last birthday. I can’t say we celebrated that birthday; he was in the hospital and though we didn’t know it (or were in denial), he was only days from leaving us. I did send him a balloon bouquet, but it seemed so lame. Even when in robust health, he was hard to buy for. He never wanted typical “dad” stuff, the newest combination ant farm/hairdryer gizmo or smelly aftershave named after a celebrity he’s never heard of. And a recliner? I only saw him in one of these the last few weeks of his life.
For the first few years after my dad passed, his birthday was agonizing. Now I experience it as sort of a reverse holiday -- a time to think, not of what material gift I might give him, but of the priceless gifts he gave me. Near the top of that list is the gift of wacky memories. Not the noble and endearing stuff like coming to all my piano recitals and saying my prayers with me every night, but the stuff that only my dad, among all dads on the planet, would do. When young and foolish, I may have been embarrassed by his antics. I am now (as Mark Twain so aptly put it) old and foolisher, and I am PROUD of him.
I’m sitting here writing this at all because he first worked his brand of offbeat magic on my mother. When on their first (blind) date he asked her, “Shall I impress Superwoman by playing the buffoon, the sophisticate or the intelligentsia?” – she was hooked. He had done all three at once, in the space of a single sentence.
I can smile at all this now, but losing Dad was harder than I could ever have imagined. And on top of my own grief, having to explain it to a very literal-thinking six-year-old with autism was a challenging process that took half a year. That the body ceases to function but the spirit is inextinguishable. That the part we see and touch and hear goes away but the part we can’t see can never be taken away from us. Ironically, in the years since Dad passed over, I’ve been able to see and hear and touch parts of him that I never did while he was alive. In many ways, we are closer now. Maybe it’s me. Maybe I’ve become a better listener.
In writing my 5th anniversary column for Autism Asperger’s Digest, to appear in the September-October issue, couldn’t help looking back at my first column and comparing my family situation then and now. Naturally, many things have changed. Some have not. A small article I spotted in a neighborhood paper here embodies both.
A local mom of a five-year-old with autism and an experienced behavior therapist have launched an autism center offering consultative services for custom home programs, family support and training. This kind of resource is becoming more common, and nothing like it was available when we first stepped foot on the spectrum fifteen years ago. It is so very gratifying to me that families no longer have to face the challenges of autism alone and bewildered; there are now so many directions in which to reach out.
What put the pin in my balloon about this promising new venture was the remark made by a local business owner who jumped in to support it by donating a portion of its May sales: “We wanted to help. Autism is a tragedy for families.”
It goes without saying that the support, financial and emotional, of our local communities is deeply appreciated. But I cannot say this more strongly:
Autism is a tragedy for families only if they allow it to be. The greatest tragedy that can befall a child with autism is to be surrounded by adults who think it’s a tragedy.
This is one of the things that hasn’t changed for me. Even during our darkest struggles with autism, I viewed it as a multi-dimensional gauntlet, an obstacle course, a detour, an enigma. But never, ever a tragedy. Because I never accepted that the way things were that day was the way they would always be.
“The difference between heaven and earth is not so much altitude but attitude.” These words are those of Ken Keys, Jr., whose book The Power of Unconditional Love I quoted in an early column, and in my book Ten Things Every Child with Autism Wishes You Knew. I took them to heart. If I had viewed Bryce’s autism as a tragedy, it’s unlikely I would have experienced the never-to-be-duplicated moment that unfolded in a doctor’s office just last month. It was our first visit to Bryce’s new primary care doctor, his pediatrician having recently retired. She asked him if his autism affects his life. (Note: not how does your autism affect your life, but does it?) Bryce answered, with complete aplomb, that it really doesn’t affect his life that much “because, you have to understand, in that regard I had the perfect mother.”
No mom who is reading this will have to guess what my reaction was: bawling in front of a doctor I’d known less than ten minutes. I expected my teen to backpedal a bit, maybe saying, oh c’mon Mom, you know what I mean... But no. He just looked at the doc and said, “What? It’s true. She did everything she could for my autism, so it’s just not that much of an issue now.”
Tragedies by definition don’t have happy endings. Great for Shakespeare, not for us. You get to choose, and you don’t have to choose between attitude and altitude. You can have both.
With abundant thanks to Dario Diniz and Mirella Giglio of Brazil, and to Eszter Daniss-Bodó of Hungary, we now have a Portuguese and Hungarian translations of Ten Things Every Child with Autism Wishes You Knew (article length) available on my website.
Click here for Portuguese translation of Ten Things on Ellen’s website
Click here for Hungarian translation of Ten Things on Ellen’s website
This Month’s Reads
My story about the 1893 murder of a police officer that outraged an entire county and reverberated for decades sprang from a chance encounter with a very unusual tombstone. Here’s an excerpt; a link to the full article will appear in my July newsletter.
Officer Down: A Tombstone Tells Its Story
Even Paulson didn’t write his own epitaph, and the instant I laid eyes on it I felt the piercing depth of loss dealt to those who did – not just a family but a whole community. Embodied in those few chiseled words - the shock, the sorrow, the anger, the spectacle of a sensational trial played out in the media across five states, and the repercussions that would rage on for two decades.
Continued next month...
The submissions deadline for the next issue is July 31st. Please visit the site to see what they are looking for.
Newsletter archive on my website: if you are new to our newsletter community, please visit the newsletter archive on my website and browse some popular past features here.
May 2009: Ellen’s Archive: I Sound Like My Mother – I Hope! // Mixed feelings about Autism Awareness Month // Vietnamese translation of Ten Things // Hyperlexia literary journal debut issue
April 2009: Right on the Money// Encouraging playground interaction
March 2009: On hiatus
February 2009: You Said It: Your favorite articles in 2008 // A Readers’ Favorite: Three Little Words
January 2009: On My Soapbox: The Less the Merrier for 2009 // Winners quit, quitters win
December 2008: On holiday – see you next year!
November 2008: Interview: Autism and the Holidays
October 2008: Childhood Obesity: is it abuse? // A-(scavenger) hunting we will go // Happily ever after, in real life
Ten Things Every Child with Autism Wishes You Knew
Ten Things Your Student with Autism Wishes You Knew
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders
The Autism Trail Guide: Postcards from the Road Less Traveled
If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at www.amazon.com. It’s easy to do and you don’t have to post your real name.
Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at here.
©2009 Ellen Notbohm | Third Variation Strategies