This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.
It’s not every day I get to chat one-on-one with a Pulitzer Prize winning journalist. But Ron Suskind, author of Life, Animated, immediately put me at ease. We both shared a common connection – raising an autistic child. Twenty years ago, Ron and Cornelia Suskind’s son, Owen, was diagnosed with autism. Life, Animated chronicles the Suskind family journey and “powerfully reveals: how, in darkness, we literally need stories to survive.”
Life, Animated is so different from your first five books. When did you make the decision to share your story? And what was it like to write about something so personal?
I lived a pretty public life over the last 25 years, as a national affairs writer for the Wall Street Journal and the books…Life, Animated is my 6th book. With so much going on publicly, it was important to keep some core of privacy. It’s easy to write about pretty tough stuff when it’s not about you. So it was a tough decision and had a bit of a funny revolution.
I started my first book, The Hope of the Unseen (started as a series in the WSJ that won the Pulitzer Prize for feature writing), a month after Owen was diagnosed. As I went into this blighted urban school in the worst part of Washington and saw a whole building full of kids who were very much left behind…I looked at them differently having someone who was already so dramatically left behind living in the bedroom. I saw the way people stared at my son. In the other books that followed that first book, I was in Afghanistan and Pakistan, wrestling with presidents. And it became clear to me, at some point, that I had been writing about people left behind all over the world and the most dramatically left behind person, was in many ways Owen…who had no place at the table.
We lived in a planet of story and journalism. And friends – who were also journalists – would ask if we would write about Owen…[they said] it could be a great thing for people with autism, you’ve learned things that could be of value to others. But we mostly stayed out of that, we had our hands full. When Owen was around 19, he really started to attain a self-awareness that we thought he would never get to. He was saying in various ways, that he was a special person and wanted people to know who he was. That started a conversation (around four years ago). It got to the point, where Cornelia and I, looked at each other and said: Can we turn the hot light of investigative reporting – what we’ve done our whole life – on ourselves? It was an emotional inquiry and a very tough decision. Basically Cornelia posed the question, “Could a book like the one we would write, could that have been of value 15 years ago when we were so lost, to us?” And of course, that was a yes.
Denial – especially in the early stages of autism, is a natural response for many parents. You share something that a family friend tells you – “Respect denial. It’s there for a reason: a way to cope with what we cannot face.” At what point do you think you and Cornelia were ready to face autism?
I don’t think Cornelia and I separated there. We both tiptoed along mostly side by side. We felt immediately the weight (in 1993/94) of the word autism and what that word seemed to indicate. As Owen starts to grow through the middle years of 5, 6 t0 11 – [we realize autism, PDD-NOS and Asperger's] it’s just a label game. I think it was a gradual process of giving up these notions or expectations and how those expectations distill themselves into hope for a certain set of outcomes. As we started to give those things up a bit, the labels became less important and the natural issues of denial faded. And it happens within a few years.
How have your hopes and dreams evolved for Owen?
In a way that’s fascinating. You make life with what’s in front of you…Owen has stitched together a life. We try to appreciate – as Owen does – what’s in front of him and a lot of the expectations [that we used to have] we just don’t carry them around anymore. Owen is autistic and will be autistic the rest of his life. He still has many, many challenges. But we want Owen to live fully, to feel his life fully. And to have choices. That’s the big thing – to have as many choices as possible. We want Owen to be able to live an intentional life on terms that he needs to live it on. To be supported so that he can try things, that he hopes for things, that he can reach for things. Owen is now sufficiently self-directed and has built enough capabilities that you feel that happening. It happens in the pages of the book.
What are your favorite Disney movies?
The four favorites are the ones that have been the most useful to use, The Big Four: Beauty and the Beast, Aladdin, The Lion King and The Little Mermaid. They were central to Owen’s emergence.
I know Life, Animated will resonate with many autism parents. What do you hope people outside the autism community will take away from reading your book?
We had many nominations for possible titles and the one Cornelia liked was, I Want So Much More Than They’ve Got Planned – the last line of the ‘I Wish’ song from Beauty and the Beast. I sang that with a group of autistic kids at the United Nations [on Autism Awareness Day]. If we can manage to allow [individuals with autism] with all their self-directed energies to discover so much more than we’ve got planned, then they will be better off and more importantly we will be better off.
Owen sees himself as “the leader of the sidekicks” and you dedicate the book to your older son Walt, “a real life hero” - would Owen agree?
Oh yeah. When Owen built the sidekicks philosophy, he started applying sidekick characters to us. So for birthdays or whatever he would make you card and draw a sidekick. I was often Merlin or Rafiki. Cornelia was often Big Mama – the wise owl from The Fox and The Hound. But the only one Owen drew as a hero was Walter – Aladdin, Eric or Simba. [Cornelia and I] realized that the dynamic of Owen and Walter’s relationship was arguably the most important in either of their lives.
It’s interesting because now Owen has come to realize that we are all sidekicks really, searching for qualities of the hero within ourselves.
Since publication, their site lifeanimated.netwas created to keep readers informed about the book and to create a place for a community of people who want to connect and share the affinities of their children. Readers are invited to contribute to the Autism Artists Project, by uploading an image or link to a video of art made by an autistic artist.
Amongst the stuff I worry about with my kids—are they eating healthfully enough, are they doing OK in school—the quality of air they breathe is something that only occasionally crosses my mind. Like when we’re stuck in a local traffic jam and the fumes are pouring in through the vents, I wonder about breathing that stuff in. I don’t usually know our daily Air Quality Index, which is probably good given it’s not something I can control, other than doing the usual environmental good by using less electricity, creating less waste and planting greenery in our backyard.
If you’re wondering about the cities with the overall cleanest air, Honeywell Air Purifiers and a group of researchers recently came up with a list of the top 100. Data was based on particular matter concentrations, ozone concentrations, pollen counts, access to parks and “green” and “clean” city rankings for the 100 most populated U.S. Cities. The top 10 cities with the best air quality:
Sesame Workshop has a new initiative, See Amazing in All Children, to help educate the public about autism. They’ve teamed up with Autism Speaks with an aim of combating, as they say, “the stigma and isolation so often experienced by kids with autism and their families.” Sesame Workshop, the non-profit that produces Sesame Street, will also create digital tools and resources to help reduce the stress of everyday routines, including brushing teeth, getting dressed, trying a new food and playing with other kids. It will work with other organizations such as Exceptional Minds, a vocational center and animation studio for young adults on the autism spectrum, to create content.
The initiative officially kicked off with Abby Cadabby lighting the Empire State Building blue, for World Autism Day. “We felt we could play a critical role in reducing misconceptions by highlighting the commonalities children with autism share with all children,” said Dr. Jeanette Betancourt, Sesame Workshop’s Senior Vice President for Community and Family Engagement. “Together with our partners, we will leverage the power of our engaging Muppets to help bring this message to children, families and communities.”
I was thrilled to hear the news. At the same time, as the parent of a child with cerebral palsy I did have a twinge of “But what about my kid?” Just like children with autism, Max deals with plenty of misconceptions about his condition. Other kids, and sometimes adults, don’t know how to approach him. They think of him as a child who’s very much not like them when, in reality, the opposite is true. It’s usually up to me to pave the way.
Sesame Street has an admirable history of including children with disability in their programming. You may have read ”Welcome To Holland,” Emily Perl Kingsley’s 1987 essay about raising children with special needs. The mom of a son with Down syndrome, she got a gig as a writer for Sesame Street and became a champion for inclusion on the show. This past year the show introduced a Muppet service dog who helps a girl in a wheelchair. There’s also Traction Jackson (TJ), a boy in a wheelchair who’s appeared in computer-animated segments:
I have hopes that Sesame Street’s autism initiative could change perceptions about kids with cerebral palsy, Down syndrome and other special needs. Every little bit of awareness helps, especially when it’s coming from a program as respectable and far-reaching as Sesame Street.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.
My son, Norrin, is eight years old and I try my best to focus on where he is now rather than worry about the future. But if it’s one thing I’ve learned about motherhood is that the years fly by. Eventually Norrin will age out and the special education “safety net” will be lifted. I feel lucky that Norrin’s school goes up to 21 years old but then what? Will he be able to get a job or live independently? Will he have the tools to face the world as an autistic young man?
Those are the questions the critically acclaimed documentary, Best Kept Secret tackles.
At JFK High School, located in the midst of a run-down area in Newark, New Jersey’s largest city, administrators answer the phone by saying, “You’ve reached John F. Kennedy High School, Newark’s Best Kept Secret.” And indeed, it is. JFK is a school for all types of students with special education needs, ranging from those on the autism spectrum to those with multiple disabilities.
Janet Mino has taught her class of six young autistic men for 4 years. They must graduate from JFK in the spring of 2012. The clock is ticking to find them a place in the adult world – a job or rare placement in a recreational center – so they do not end up where their predecessors have, sitting at home, institutionalized, or on the streets.
Last night I had the opportunity to hear Janet Mino speak at an autism parents support group. I was inspired by her devotion and wished that there were more educators with her mindset. One of the things she said that really resonated with me was about communication. Everyone can communicate, even if they are non-verbal – their behaviors are how they communicate. We have to take the time and figure out what they are trying to say. A tough love kind of teacher, Mino strives to teach her students to live without being prompt dependent, urging parents and caregivers to do the same. “It’s a harsh world. We must prepare our kids to face it.”
It’s autism awareness month and magazines and media share the stories of children with autism. Like any other kid, children with autism grow up. Services and resources are critical at every age but as autistic individuals grow up, the resources and services dwindle down; options are extremely limited. Those are the stories that need to be heard too. In a interview with Kpana Kpoto, Mino advises, “Even after 21, still find ways to build them up. They need support. Plan early.“ In order for parents to plan early, we need to be prepared and know what to plan for. Best Kept Secret sheds light on the things parents need to know. It’s a must see for any parent or caregiver of an autistic child and for teachers wanting to better communicate with their special needs students.
Have you seen Best Kept Secret yet? If not, it’s available for download on iTunes (for personal use) and on the Academic Video Store (for educational use).
OK, here’s your happy news of the week. Maybe your entire month.
Lisa Anderson lives in Austell, Georgia with her 20-year-old twin daughters, Amber and Alicia Whatley, who both have cerebral palsy. Back in 2008, Anderson was laid off from her job at a local plant that makes industrial cleaning products, as reported by The Marietta Daily Journal. The single mom started taking online classes with a university, but went through her entire 401k savings plan to pay for living expenses. She declared bankruptcy. After fifteen years of living in their home, the three were facing foreclosure.
First up: The mayor of the town, Joe Jerkins, and several friends pitched in to buy the home. Still, Anderson owed JPMorgan Chase $100,000. A month ago, the bank called to say her mortgage payments would be “forgiven,” much to Anderson’s disbelief. At a news conference, a JPMorgan Chase Vice President said, “Sometimes exceptional problems call for exceptional solutions.”
Said Anderson, “It really, truly, sincerely is a miracle for me.” Said Alicia, “I never thought that God was going to be that good.”