Posts Tagged ‘ Autism Hopes ’

Spreading Awareness, Acceptance and Making an Autism Fashion Statement

Wednesday, April 23rd, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Over the weekend I attended an Art for Autism Fundraiser and I got to meet Nell Escalante for the very first time. Nell is an art/museum educator, DIY fashion redesigner, blogger and an autism mom. Both of Nell’s sons – ages 11 and 7 – have autism and are “on opposite ends of the spectrum.” Nell’s older son is “high-functioning practically Aspergers” while her younger son is “non-verbal, super active [and has] sensory issues.”

Nell and I have been on line friends for a few years and I wanted to support her as well as the other local Bronx artists. She donated three of her designs (see above) to the fundraiser. Nell’s “If They’re Gonna Stare” collection was inspired by her younger son. “I get a lot of stares when I’m with [him]…so I figure, if they’re going to stare might as well make it worth their while and look good,” she said.

But Nell didn’t always combine fashion with personal experience. When she initially set up her Etsy shop and blog back in 2008, she admitted to being “overwhelmed with autism talk and needed a space to be just Nellie.” While she never hid her sons autism, Nell knew she didn’t want autism to be “at the forefront of [her] blog.” Among her friends, Nell was known as “the Autism Mom” and felt like she was losing her identity.

“I wanted [my] blog and my shop to give me a voice. The voice of a woman, an activist, a lover of fashion, a creative being, a designer, a mom. But not an autism mom.”

After a few years, Nell realized that her journey was important and that being an autism mom was as much of her identity as everything else. It was through art and pursuing her own passions that Nell was able to come to this awakening. And now she encourages other mothers to continuing doing what they love to do because it will be thing that gets you through.

“When I went back to art…I became a better mom, a happier mom. Art saved my life. You don’t have to be a martyr to be a good mom. Autism is transformational, if you let it, it can make you better, not bitter.”

 

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A Conversation with Ron Suskind, Author of ‘Life, Animated’ a Story of Sidekicks, Heroes, and Autism

Wednesday, April 16th, 2014

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.”

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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.

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Since publication, their site lifeanimated.net was 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.

 

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Best Kept Secret: When Kids With Autism Grow Up And Age Out

Wednesday, April 9th, 2014

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).

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Not So Different: A New Anthem for Autism

Wednesday, April 2nd, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Today is World Autism Awareness Day and what better way to convey a powerful message of awareness and hope than through song. That is exactly what Cassandra Kubinski’s song, “Not So Different” does – a song written to “foster acceptance and understanding.” When Kubinski was approached by her friend, Vanessa Ticona – the mother of two autistic sons, and asked to write a song for an autism charity walk, Kubinski agreed “knowing it was a way to use the healing power of music to contribute to the cause.”

Unfamiliar with autism Kubinski drew inspiration for the lyrics from an aunt with whom she shared an emotional connection. Kubinski’s aunt had an intellectual disability. “My aunt had these interesting quirks,” said Kubinski. “As a writer, it was important that the words made sense to people within the community.” And so, in addition to writing from personal experience, Kubinski spoke at length with autism parents – including her friend, Vanessa. The more Kubinski learned, she was able to see the parallels between her aunt and autism. While each parents experience was different, “the common factor,” Kubinski learned was that each parent spoke of their child’s unique “way to express themselves.”

“Not So Different” will resonate with autism parents and educators. And it’s a song easy for enough for children with autism to sing and embrace as their own personal anthem.

However, “Not So Different” isn’t just a song exclusive to the autism community, Kubinski hopes the message will make a much bigger impact as “…it’s about understanding that everyone wants the same things: to love and be loved without being judged or changed.”

“Not So Different” is available for download here, sales will benefit autism organizations.

Cassandra Kubinski, singer/song writer “Not So Different”

For more on Cassandra Kubinski’s and my thoughts on “Not So Different” – check out the latest post on my blog: An Inspiring Song by Cassandra Kubinski to Raise Autism Awareness

 Find cool activities to beat boredom here.

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

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How To Help Your Child With Separation Anxiety

Wednesday, March 26th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia (formerly AutismWonderland).

My son, Norrin, is eight years old and has autism. When he was a baby, he had no problem when I left him with the babysitter so I could go to work. Even as a toddler, the first time I put him on the little yellow school bus – he didn’t cry. And while it hurt to think Norrin didn’t care leaving me, it would have felt so much worse if he had. But over the last year or so Norrin has had difficulty when we separate. That’s the mother and son phase we’re in now.

It’s tough seeing my son in distress every time I walk out the door or have to leave on a trip. Here are 8 things I’ve been doing to ease his anxiety.

Mark it on a calendar. We talk about the days of the week and the months on a daily basis. During the times when I travel, I print out a separate calendar and mark the day I leave and when I return. While I’m away, my husband, Joseph, goes over the calendar with Norrin. I also communicate with his teacher so they can do the same, if Norrin becomes upset during class.

Map it. Last year, I went to California and before I left, I picked up a puzzle map of the United States. I showed Norrin where we lived and then showed him where I was going. Not only does the map help Norrin with the States, but it gives him a sense of where we are.

Show them where you work. Norrin has been to my office several times and he likes being there. And I’ve also taken Norrin to his dad’s job. Norrin knows where we work – it’s not some imaginary place. When we tell Norrin that we’re at work, he knows exactly where we are. I think knowing creates a sense of security.

Create a visual schedule. Many children with autism respond well with visual schedules. They like to know what’s next. By creating a visual schedule, you can let your child know when they can anticipate seeing you again. AutisMate is a great app that allows you to create a personalized schedule.

Time. We talk about time a lot. While Norrin doesn’t understand the concept of telling time – we tell him what time we’re doing things. We show him the time on the clock. On nights when I work late, Joseph tells Norrin what time I will be home.

Make time for Face Time. Modern technology helps families stay connected. When I’m away, I schedule a time to Face Time with Norrin. He doesn’t stay on for long but he gets happy seeing me.

A pictures speaks a thousand words. In the digital age, photos feel like a thing of the past. But I keep family photos in Norrin’s room so that he sees us. Sometimes a picture in your child’s pocket can be the comfort that they need.

Promise a special treat. Whenever I travel, I always promise to bring a little gift back for Norrin. Nothing extravagant – even a peace of candy will make him happy.

Does your child experience separation anxiety? What do you do to help them work through it?

Plus: Find cool activities to keep your kiddo occupied while you’re away.

Living Life with Sensory Issues
Living Life with Sensory Issues
Living Life with Sensory Issues

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