by Deborah Steele Hazen
My grandson Owen is a beautiful child. Of course, I think all of my eight grandchildren are beautiful, but this is about Owen and his extraordinary mind.
Owen is tall for his age (6 1/2), and slender. His light brown hair is sprinkled with gold in the sunlight, and his deep brown eyes are large and soulful. In their depths you can see intelligence and love, a sense of fun, a bit of mischief, and, sometimes confusion and sadness.
Owen is active and coordinated. He loves to play outdoors on his swing set or run on the track with his mother and brother.
He is fascinated by movement in the air – the way balloons or bubbles float in the breeze; how a half roll of toilet paper flies behind him as he runs. He likes to experiment with plastic grocery bags – wadding them up, then snapping the air into them, and with a flick of his wrist, releasing them so that they float like a parachute through the air. I’ve tried to do it and can’t. When he sees me trying, he comes to me, takes the bag and demonstrates with a hint of pity at my incompetence in those soulful eyes.
Owen loves “horseback” rides (both real horses and human substitutes). He likes to play with his mother’s and my hair – we both have fine, straight hair that blows in the wind. He loves listening to music of all kinds, from the Beatles to Beethoven, and he enjoys playing games on his iPad, but gets frustrated if the applications are too slow.
More often than not, Owen is singing – sometimes recognizable tunes, but also vocal exercises and his own compositions. He has a wide range, sings in perfect pitch and always in the key of C major.
Owen is very affectionate with those he loves. If he feels a bond, he will lean in close and snuggle, throw his arms around you, and breathe in very deeply the scent of your hair. Then he might squeal with joy or giggle.
Sometimes when he hugs me, he whispers “Baba” – the name my grandchildren call me – in my ear.
He also says “Mama,” especially when he really wants his mother (my daughter Erika Weisensee), and a few other words including “bubbles” and “gum.” While Owen speaks volumes with his eyes and from his heart, he is considered non-verbal.
Nonetheless, he is learning to communicate more and more thanks to his specially-programmed iPad and his growing vocabulary of sign language.
Owen is one of millions of children and adults impacted by autism – a mysterious developmental brain condition, or more accurately a “spectrum” of disorders – that researchers are only beginning to partially understand. A recent study estimated that one in 88 children in the United States – one in every 54 boys – is impacted by autism.
Exactly how they are impacted and to what degree, differs widely from person to person.
There is a saying in the community of people who love people with autism that “if you know one person with autism, you know one person with autism.”
Everyone is unique. Please don’t jump to conclusions about people with autism, but please do learn more about it.
Owen is considered severely impacted by autism, but he is much more than “autistic.” He is sweet, affectionate, funny, stubborn, athletic, musical and perseverant. Although it goes against the generalizations about people with autism – that they have trouble relating to the feelings of others – Owen can be very empathetic when those close to him are hurting. We know that part of autism’s impact on Owen makes him hypersensitive to noise and visual stimuli. Perhaps it is the flip side of that hypersensitivity that has created Owen’s unusually deep, if unspoken, emotional and spiritual connection to those with whom he is closest.
He is ferociously loved by his family and many friends. He also is loved by the special education teachers and therapists who are working hard with us to help Owen be the best Owen he can be.
Owen works hard too, and daily shows his family, friends and teachers evidence of how much more is locked behind those beautiful eyes, inside that extraordinary mind.
Autism Awareness; Insurance Reform
April is Autism Awareness Month and here are some ways to show your support for people with autism:
E-mail your Oregon state legislators and ask them to support autism insurance reform in this legislative session. (Current contact information can be found under “Elected Officials” above.) Oregon is one of 18 states in the country that has yet to pass legislation requiring insurance companies to cover essential treatments for people with autism. Right now, most Oregon insurance companies deny crucial, evidence-based therapy for autism, such as Applied Behavioral Analysis (ABA) therapy.
There are at least four autism-related bills that have been introduced in the 2013 session of the Oregon state legislature.
• Senate Bill (SB) 365 is the insurance reform bill endorsed by the national organization Autism Speaks and the Autism Society of Oregon.
• SB 381 is a licensure bill for ABA providers.
• SB 364 is an alternate version of the autism health insurance reform bill.
• House Bill (HB) 2897 is based on health insurance reform legislation proposed by the Autism Society of Oregon last year.
To learn more about autism and autism services in Oregon go to the website of the Autism Society of Oregon: www.autismsocietyoregon.org.
Display your support for autism awareness this month by wearing blue, or joining the Autism Speaks movement to shine a light on autism with a blue light bulb in a lamp or light near a window or doorway at your home or business.
If you know a person with autism, celebrate his or her accomplishments no matter how small.
Owen’s mother Erika also suggests:
“If you happen to see a mom or dad in the grocery store (or any place) with a child you think has autism, try and replace that urge to stare with a big smile.
“The child may be doing something odd, like vocalizing or chewing his shirt or rocking or doing other repetitive movements. That child is working very, very hard to cope with and process the world. He or she may have sensory overload in a way that most of us will never understand. That autism mom or dad or other caregiver is also working very hard because, believe me, we work hard to help our children cope. We’ve had our share of stares in public, but we also get a lot of smiles, and it makes a huge difference.”
Some months ago, Erika sent me a copy of “Ten Things Every Child with Autism Wishes You Knew,” from a book by Ellen Notbohm, a Portland resident and the author of several books on autism. We contacted Notbohm Monday to ask if we could print a condensed version of “Ten Things” this week. She kindly provided the following:
Ten Things Every Child with Autism Wishes You Knew
by Ellen Notbohm
from the 2012 second edition book by the same title
I am a child.
My autism is part of who I am, not all of who I am.
My senses are out of sync.
Ordinary sights, sounds, smells, tastes, and touches of everyday life can be downright painful for me.
Distinguish between won’t (I choose not to) and can’t (I’m not able to).
If I don’t comply, it isn’t that I don’t listen. It’s because I can’t understand you.
I am a concrete thinker. I interpret language literally.
You confuse me when you say “Hold your horses!” when what you mean is “Stop running.”
Listen to all the ways I’m trying to communicate.
I can’t describe my feelings in words. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
Picture this! I am visually oriented.
Show me how to do something instead of just telling me, and show me many times. Visuals help me remember what to do.
Focus and build on what I can do rather than what I can’t do.
I can’t learn when I’m constantly made to feel that I need to be fixed. Look for my strengths and you’ll find them.
Help me with social interactions.
I don’t know how to start a conversation or enter a play situation. Teach me how to play with others.
Identify what triggers my meltdowns.
Meltdowns happen when one or more of my senses or emotions have gone into overload. Figure out why my meltdowns occur and they can be prevented.
Love me unconditionally.
Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think.