Here’s a story that made Ellen DeGeneres’s Good News page: A senior at Arrowhead Union High School in Hartland, Wisconsin had a crush on a guy she’d gotten to be friends with on the school bus. Pretty typical, eh? The teen, Stephanie Kaye, happens to have Down syndrome. Her crush, Ed Brandenburg, heard that she had a thing for him.
Ed had never before been to prom, but asked her mom’s permission to take her. Then he approached Stephanie in the school cafeteria with a bouquet of flowers and popped the question. Everyone cheered. You can see Stephanie’s excitement in the video on Yahoo! Shine.
“She’s been asking me to homecoming over the years and I never took her offer very seriously,” he explained. “But this year I decided to make her last memory of me before I go to college special by taking her to prom…. She always has been the important one in the friendship.”
I think this is really sweet. But as a special needs parent, I also felt concerned. I don’t know anything about Stephanie’s social existence, but in the video she was sitting alone during lunchtime. Does she have a good social life? What happened after the prom? Did this guy start hanging out with her at school? Did people start sitting with her at lunch?
One-time bliss hits like this definitely make for lasting memories. And they make everyone involved feel good, too. For my son, though, I dream of more. I want peers who accept Max as he is, not just on special occasions but year round. I want him to get asked out to events not just because people feel it’s a “good” thing to do but because they genuinely want to. I know how lonely being a kid with special needs can be because I see it. My son attends a school for kids with disabilities but when we’re in social settings, like at the local park, kids ignore him unless I initiate conversation.
Kind gestures like this end up being just that: gestures, as sincere as they may be. There is no easy answer, but it starts with parents and teachers helping typically-developing kids understand when they are young that youth with special needs are, in many ways, just like them. Our kids and teens want to enjoy life as much as any others—and, yes, they’d like to go to the prom.
A couple of weeks ago, I was in Ireland for the launch of the Upsee, the new mobility device for kids. It’s gotten a ton of attention all around the world, with so many parents excited about its possibilities. Made by Leckey, a company that makes positioning equipment for children with disabilities, the Upsee is part of the company’s new Firefly division; it specializes in products that improve the lives of families. The Upsee is selling for $489, including shipping.
The bloggers in attendance met owner James Leckey, who is passionate about changing the lives of kids with special needs. He asked us about products that would improve the lives of special needs families. I mentioned an inexpensive, collapsable stroller for older kids that looked cool. We ran into a challenge when we visited Disneyland in December; Max no longer fit into the strollers, and we had to get a wheelchair for those times when he got too tired to walk around.
So, I’m throwing the question out to you: What would make your family life better? Share anything at all, whether it’s more funding for respite, improved access in public transportation, new products or basically anything. Feel free to list as many ideas as you’d like.
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.