Written on April 9, 2012 at 10:19 am , by familycircle
Guest blogger Debra Hosseini, author of The Art of Autism: Shifting Perceptions, on how painting changed her autistic son’s life.
“I don’t think Kevin belongs here,” Ellen, the preschool director, gently says. “He doesn’t play well with other kids. He knocks over their toys and doesn’t engage.”
I blink hard; tears well up in my eyes. My heart sinks as I watch Kevin, a solitary child in a room full of children, lining up the toy trains.
Looking around the happy parent-participation schoolroom I say sadly, “But I like it here.”
“Kevin needs more structure than we offer; the County has a program for children like Kevin.”
For the next three years a little orange bus arrives at our house each school day. Kevin is barely tall enough to see out the bus windows as it bumps along for the twenty-mile trip to his school.
At first I think, He can’t have autism. He loves to be hugged and cuddled. I tell the neurologist this.
“He’ll need care for the rest of his life. You better start planning,” his comment makes my blood turn to ice. That’s when the recurring dreams of Kevin being lost begin.
I meet with Dr.’s Bob and Lynn Koegel at the UCSB Koegel Center for Autism. Therapy begins. Kevin must learn to use his words. We must not give in to him when he screams.
Our house becomes a revolving door of therapists.
Five years later, Kevin’s therapist, Colin, brings art supplies for their session.
Kevin demands, “Draw me a picture.”
“No, you draw me one,” Colin answers.
Thus began Kevin’s and my journey into art.
“Lots of texture,” Kevin exclaims gleefully, smearing the canvas with heavy paint. He loves to mix the colors and feel the brush drag across the canvas. It fulfills a sensory need in him. Soon our house is filled with bright-colored paintings.
Within a year, I need to find places to house all of his art.
I arrange for Kevin and a few other artists to show their work at a charity benefit. My new vocation is born: securing art venues for differently-abled artists.
Now, Kevin is a junior in high school. Last year his art was displayed at the Museum of Modern Art in the Ukraine. We flew to Canada for Kevin to receive an international award (from ANCA – Naturally Autistic) for the category “Visual Artist 18 and Under.”
I’m now an author and promoter of talented individuals on the spectrum. My latest book, The Art of Autism: Shifting Perceptions (April 2012), includes 77 artists and poets, as well as stories of the power of families, love and determination. I hope the readers of the book will be inspired by each artist’s journey.
I’m inspired every day by the art and poetry that fills my inbox. I continue to find venues for artists to be seen and heard.
“Let’s dance,” Kevin’s classmate Ben says to Kevin at the Valentine’s Day party.
I take their picture holding hands as they walk to the dance floor. For the first time, Kevin is making friends.
My reoccurring dream of Kevin being lost has stopped.
Debra Hosseini, is the parent of 3 children. Her youngest, Kevin, is on the autism spectrum. She is the author of The Art of Autism: Shifting Perceptions. In 2011, she co-founded with autism mom Keri Bowers, The Art of Autism collaborative. For more information visit www.the-art-of-autism.com. Kevin’s website is www.kevingallery.com.
Written on April 4, 2012 at 12:00 pm , by Heather Eng
Guest blogger Elaine Hall, creator of the Miracle Project, on raising her autistic son.
Spring is finally here, and with the coming of warmer temperatures and longer days, the humble egg, once again, is promoted from morning-mundane to sacred icon. Whether being roasted and prominently displayed in Jewish homes on the Passover Seder plate, or hidden and searched for in joyous Easter egg hunts, the egg is transformed.
During the holiday season, usually in April, we will celebrate miracles. Rebirth. Renewal. Redemption. How timely that we also celebrate Autism Awareness Month in April. Autism, for just this one month, also leaves its secluded ubiquity to take stage in our communities’ public forums. Autism Speaks encourages us to “light it up blue,” and the world gets a glimpse of the challenges and joys of families journeying with raising a child with autism.
A little over sixteen years ago, coincidentally, when I received the sad news that my womb would never become a home to my “biological eggs,” I began a new journey. In the month of April 1996, I adopted my now almost 18-year-old son, Neal, from a Russian orphanage when he was 2 years old. He was malnourished and had liver toxicity; he spun around in circles, stared at this hands, banged his head on the floor, never slept, rarely visually referenced others, and he could tantrum for hours.
At the time, I thought all of these disconcerting behaviors were attributable to deprivation in the orphanage. Today we know the signs of Autism – once diagnosed 1 in 10,000, today diagnosed in an astonishing 1 in 110.
In less than a year, Neal grew physically healthy, but he did not “catch up” developmentally. Shortly before his 3rd birthday, he was diagnosed with severe sensory dysfunction, mental retardation, and severe, nonverbal autism. Soon after, the well-meaning question from friends and family came my way, “Didn’t they tell you,” followed by the crushingly insensitive suggestion from a few, “Send him back.” “He’s my son!” I would respond. After a few weeks of reeling from this “advice”, I jumped into action. I sought therapists and ‘cures’ from wherever I could find them.
When traditional behavioral treatments did not seem to work for Neal, I turned to the esteemed Dr. Stanley Greenspan (may he rest in peace), who encouraged me to understand Neal’s sensory system, to follow his lead, to join his world, and then to challenge him with adult directed activities. At the time, this methodology was seen as unconventional, so I sought out my friends, actors, musicians, dancers, and other creative people to join Neal’s world 10 hours a day, 7 days a week, until Neal slowly emerged into our world. These methods coalesced into the fundamental approach for The Miracle Project, a theater program I created for children of all abilities, profiled in the HBO film, AUTISM: The Musical. I later chronicled this journey in my memoir, Now I See the Moon, and formulated this methodology into Seven Keys to Unlock Autism (co-authored with Diane Isaacs).
Today, Neal is a happy, joyous, calm, peaceful, and still nonverbal, but extremely intelligent young man, who uses an iPod touch, iPad, and sign language to communicate with the world. He is adventurous and capable of so many things. Our task now is readying him for adulthood and independence. One of the common challenges with autism is motor planning and sequencing. To assist Neal with this challenge, every single task must be broken down into small, incremental steps so that he can map on (learn) to do the task. For the past few months, my husband, Neal’s stepfather, Jeff, has been teaching Neal simple cooking tasks. One of which is boiling an egg. Since Neal enjoys eating three hardboiled eggs for breakfast lately most every morning, it seemed appropriate that Jeff would start his cooking lessons with learning to boil eggs. Think about all of the different tasks it takes to boil an egg: Get the pot, fill with water (Neal learned on his own the right amount), take the eggs out of the refrigerator, place eggs ‘gently’ into the pot, turn the fire on, wait 10 minutes, etc., etc., etc. This simple task took months to learn. With the exception of a few broken eggs and several undercooked yolks ending up in the bottom of the sink (Neal never forgot to turn off the burner and use a pot holder), Neal mastered this task and had become our morning chef, even adding another egg in the pot each morning for me.
A few mornings ago, as I was frantically working against a deadline for a grant proposal, Neal motioned to me that we were out of eggs. Pressed for time, I couldn’t go to the store and get them. For the past few weeks, Neal had been working with Ryan, one of his coaches, on going into a store and buying an item on his own. Ryan would wait outside and Neal would return with an apple, or an energy bar. “Hmm, maybe Neal could go get us some eggs?” I thought. “Dare I risk this? If not now, when?” I called Neal over to me and asked him if he wanted to go to the store down the street and buy eggs by himself. He signed ‘yes’ and smiled. “Okay,” I said, and reached into my wallet to hand Neal a five-dollar bill. I instructed him to use his iPod touch to let the man at the counter know he wanted eggs, and then to pay for them and bring back the eggs, the change, and receipt.
I held my breath as Neal walked out the door. I called the store in advance to let them know that Neal was coming in, and then asked them to call me when he left. I clutched my keyboard, not being able to concentrate on the grant proposal – so I reached out to my Facebook friends to calm my anxiety. In less than 15 minutes, Neal returned with the eggs, the change, and the proudest look on his face I had ever seen. He was beaming! And so was I.
Neal’s triumphant egg-hunt, which would be viewed as one small step for a ‘typically developing’18-year-old, was a giant leap toward independence for my sweet son with severe autism. Neal is a constant reminder to our family that the miraculous occurs every day if we’re willing to risk breaking a few eggs.
Wishing you and your family a blessed holiday. May we all continue to embrace the miracles in each and every moment.
Elaine Hall (“Coach E”) is the creator of The Miracle Project. She is the author of the memoir Now I See the Moon which was chosen by the United Nations for World Autism Awareness Day and co-author of Seven Keys to Unlock Autism: Making Miracles in the Classroom. The methods Elaine developed to reach kids with autism were profiled in the Emmy Award winning HBO documentary, Autism: The Musical. Elaine directs an arts enrichment and bar/bat mitzvah program at Vista Del Mar in L.A. She lives in L.A. with the two loves of her life, her son Neal, and husband Jeff Frymer, a play therapist.
Read all our posts about autism here. Plus, share your experiences with autism, or raising an autistic child, in the comments below.
Written on April 2, 2012 at 2:50 pm , by familycircle
And today is World Autism Awareness Day. If your child or someone you know is on the spectrum, check out these resources:
Funds research, increases awareness and advocates for people with autism and their families.
Addresses bullying, mistreatment and suicide prevention.
A social network connecting parents of kids with autism with 30,000 autism-friendly service providers.
Enables kids with special needs to express themselves through music, dance, acting and writing.
Links researchers with the autism community and encourages parents to get involved in scientific progress.
Plus, hear from real moms who fought for their autistic kids and taught them to be independent adults:
“How I Fought for My Autistic Son,” by Joanne Corless
“Letting Go: How I Taught My Autistic Son to Be Independent,” by Glen Finland
All month long, we’ll be posting more dispatches from the ASD community. Find them all here.
Share your experiences with autism, or raising an autistic child, in the comments below.
Heather Eng is web editor of FamilyCircle.com.
Written on March 1, 2012 at 1:00 pm , by familycircle
Skip the dolphin therapy. Hold the herbal supplements. We have found the cure. After all the expensive evaluations, therapies, and independent living programs for our autistic adult son, the best investment we ever made turns out to be his Metro farecard. For $1.35, David has bought himself a ticket to freedom—his own set of wheels.
In the summer of 2008 my son David and I spent weeks riding the Washington, DC, subway trains, not going anywhere, just, you know, riding from stop to stop. So it goes, when your handsome twenty-one-year-old is a rangy six-footer with a sexy five o’clock shadow and the mind of a good-natured adolescent. Pervasive developmental delays cause their own set of problems, and David’s is a kind of exuberance that reveals itself by his swinging an imaginary baseball bat whenever he’s really happy. Feet squared, wrists piled up high on his right shoulder, and swoosh! The impulse reflects an open innocence that’s way too friendly when it comes to strangers. At Eighth and F, Northwest, when a homeless man asks him for change, David pulls out his wallet and says, “OK, how much?”
But if he could learn to ride the Metro, my husband and I believed, then he could travel to a job site; and when he locked down that job, he could pay his rent. With a job and an apartment, he would have a real life. And who knows? Maybe even find somebody other than his dad and me to love him well into the future. It was a goal we could all agree on. David swung his imaginary bat whenever we talked about it.
So at the end of the summer David and I got cozy with all the different Metro routes. We visited the Zoo and met the guy who scrubs the elephants’ backs. We surfaced in Chinatown, where David walked around with a starry-eyed look on his face because of “the pretty Korean girls.” One morning, we hopped off at the Smithsonian for him to run to the Lincoln Memorial while I waited on a bench in a light downpour. Ever since he was a child, he could run like a deer, and in high school he had run cross-country. Another day, we raced up the escalators toward the wrong train and ended up lost, then doubled back and rode home the long way. We didn’t have anywhere we had to be that afternoon. No worries.
It stayed that way until the August evening when David told me he was ready to go it alone. We both knew this was coming; it was, in fact, exactly what we’d been working toward. I just hadn’t realized he’d be ready sooner than I was.
This first taste of autonomy was a reprieve from the nonstop commands that filled his days. Directions from me and all the teachers, counselors, and therapists who’ve always told him where to go, how to act, what to say. How numbingly tiresome it must’ve been, year after year after year, living with decisions someone else made for him.
Nowadays, everywhere he goes, he goes solo. When the train doors close behind him, he doesn’t bother to wave goodbye. It’s not rudeness, it’s just what’s missing from his Rules for Basic Living handbook. Riding the Metro, he chooses where his next stop will be, then steps out into the city a free man. Even though I no more know where he goes than the train knows where it’s taking him, David has learned to keep safe alone in the world. Another victory in my Letting Go Diary.
“I’m the boss of me now,” he says, answering all and none of my questions. But this is progress. So shut up, I tell myself, let him go.
Glen Finland is the author of Next Stop: A Memoir of Family due out March 29 from AmyEinhornBooks/Putnam. www.glenfinland.com
Read all our posts about autism here. And share your thoughts on Glen’s story, or your own experiences raising an autistic child, in the comments below.
Written on February 28, 2012 at 9:21 am , by familycircle
Guest blogger Joanne Corless was featured as our Local Hero from the story “A New Lesson Plan: One Mom’s Fight for Autism Education” in our April issue. Here, she shares her experience raising a son with autism.
I have three children, two girls and one boy. Kiersten is 21 and a nursing student in college. Kylie is 11 and in 6th grade. My son, AJ, is 22 and has autism.
AJ was diagnosed in the summer of 1991 when he was almost two years old—just a few months after Kiersten was born. When I received the diagnosis, I came home from the doctor’s office, sat on my kitchen floor and sobbed uncontrollably. All I could think was that my beautiful baby boy would never grow up to have a “normal” life.
I knew so little about autism. My only previous experience with the condition was with a teenage boy with severe autism and leukemia that I cared for as a pediatric nurse at Memorial Sloane Kettering. My husband and I were devastated and frightened about what AJ’s future would hold.
I hopped from one doctor to the next hoping to get answers and find a way to help AJ. But there was very little support. The incidence of autism in 1991 was low—only 1 in 10,000 children were on the spectrum. There were no early intervention programs in our area that specialized in autism and doctors gave us no hope. I leaned heavily on my faith for comfort and guidance; I asked God to give me strength to find a way to make a better life for AJ. I knew by the way my son interacted and responded to me that I had a very smart little boy underneath the autism. We were determined to give AJ all we had and promised never to give up on him.
The first few years were difficult. AJ’s autism took over our lives. AJ presented with classic symptoms: no eye contact, no expressive language, very little receptive language, inappropriate play, no social skills and extremely rigid and challenging behavior. I felt very lonely and isolated.
When he was three, I came across a teaching method called applied behavior analysis or ABA: Trained instructors spend hours one-on-one with an autistic child, deconstructing a task—like tooth-brushing—into tiny steps until he masters it. This therapy changed AJ’s life. In the two decades that followed, I started the AJ Foundation for Children with Autism, which brought ABA programs to local public schools, and opened The Comprehensive Learning Center, a private ABA school.
Today I look back and thank God that we were fortunate to have all the support from our family, friends and a handful of very dedicated, extremely talented behavior specialists. AJ received quality intervention based on ABA for 19 years and he has achieved far beyond our expectations. He still has autism but is a productive member of our community. He has lots of friends, participates in many activities and earns a living by working three jobs. He has a “normal” life.
Read all our posts about autism here. And share your thoughts on Joanne’s story, or your own experiences raising an autistic child, in the comments below.