Normal People Scare Me: A Blog About Autism

By Keri Bowers

THE ART OF BELIEVING – Making Big and Little Goals Come True

self advocates

Today I met with a group of adult self-advocates to share The Art of Setting and Achieving Goals. I talked with them and answered questions for nearly two hours – all-too short a time – this subject could be explored all day! Because most of them had one-to-one staff, I addressed all of my ideas to the group as a whole, sharing the importance of creating doable process steps to creating and following through on goals. We talked about big goals and little goals, and how our successes in achieving our goals makes us feel. We laughed a lot too; I like to add humor to my shares.

Giving an example of one of my own (past) process steps to attaining goals with and for my own son, I shared how writing a mission statement – as any corporation would do – is a first bold indelible step to declaring exactly what we want when we set a goal for ourselves. I shared the following mission statement I wrote in 1991 for my son when he was 3 years old.

               Taylor will live as independently as possible, fully-included in his community, with whatever supports he needs to be successful. He will be surrounded by people who love him and whom he loves.

This declarative statement was so powerful, it kept me on track for 22 years. Whenever I saw myself lowering the bar, faltering in my expectations of Taylor, or being sidetracked at IEPs and IPPs by what “they” wanted me to do, I referred to this statement for personal support, strength and clarity to keep me focused on the goal. For over two decades, I followed that mission, because I truly believed in it – even when others didn’t.

goalsThe conversation turned lively as the group and I brainstormed ideas for reaching our goals, including research; talking with others with similar goals who’ve achieved success; role playing; video modeling; drawing/painting a goal; creating a vision board; writing social stories and other ideas. We talked about process steps, discussing what they were and how to break them down into more simple steps.

AN AGREEABLE BUNCH

This was a most agreeable, if not rambunctious group of amazing adults. Even those who initially slumped in their seats had a spark of intrigue in their eyes as the group as a whole got jazzed about possibilities. Most had high ideals for their personal goals, knowing exactly what they wanted, yet a few had no idea what a good goal might be for them, or how to achieve it.

“Well, let’s talk more specifically about the goals you do have. This might help others in the group.” I prompted.

“I want to work at my job on my own – without support staff!” said Hunter, turning to his caregiver.

“I want to get a job,” said Sarah with a big smile.

“I want to be happy,” said Rachel.”

“I want more hours at the movie theater where I work…” offered Nick.

“Are you role playing with staff about how to interview ?” I asked Sarah.

“A little…” she replied.

“I have an idea you might consider, Sarah. What if you practice in the mirror to see yourself, which will help you gain confidence?” adding, “You might also try videotaping yourself, with staff asking you questions an interviewer might ask. Then you can review the footage to see what an interviewer might see?”

Sarah put her head down, shaking her head “no.” In that moment, I realized that while Sarah was delighted about the idea of getting a job, she lacked the confidence to believe in herself to help her to land one. I imagined she had little support to help her with strategies that would grow her self-confidence.

empowerment

I turned the conversation toward the idea of self-empowerment and the ability to believing in ourselves enough to allow our prospective goals come to life. Though this is a high, if not conceptual ideal, the smiles on their faces told me they got it. Some of the participants actually began to sit more erect; to smile brighter; to raise their brows.

“You are powerful!” I boomed.

“What if you knew you were awesome? How might that feel for you?”

Heads bobbed up and down. The volume in the room rose high. “Great,” “wonderful,” “I’d like that,” were some of the excited utterances I heard. An older woman whom I imagined had once lived in an institution due to her age and level of disabilities, had no language and was not able to speak with me – but her crooked smile and sparkling eyes said it all. I could feel her palpable joy run through me as we nodded to one another; her seeing that someone might think her to be powerful and awesome.

I smiled at her and said “You are indeed awesome!”

Then, turning to Hunter, I probed “Have you ever asked your boss if you could work alone?”

Like Sarah, he put his head down and replied “No. I never did… I haven’t figured out what to say.”

WOW!

Here is a capable man who designs T-shirts and posters for his company and so far, nobody, including himself, has given him support to ask for more responsibility let alone the support he needs to grow further. It caused me to wonder how much money his company made off of his designs… Hmmmmmmmmmm… I turned to Hunter’s staff member who was sitting next to him – the one who shadows him at work.

“Could you support Hunter… brainstorm together, write down and rehearse what he could say to his boss?” adding “We do not want to make our goals so big we can’t realistically meet them. How often do you step outside while Hunter is working?”

“Occasionally for short periods,” he replied.

“You have a great opportunity here, Hunter.”  I was excited by this possibility for Hunter.

Believing that small steps lead to big accomplishments, I added “What if you asked your boss if you could work without supports for just one hour to see how it goes? Then, with a small success, you might be able to build on a bigger successes.”

Again, with shoulders hunched, Hunter looked down at the floor. “I guess so.”

More and more it was evident that the idea of believing in ourselves was missing for these individuals. Believing in ourselves is critical to the process of making and achieving goals, right? And then, just as my mind was chanting they need to find a way to believe in themselves… WHAM! Something happened that shifted the entire conversation.

MY LIFE… NOT YOURS

A man in his mid-thirties, Steve, shouted out “My goal is to get married!”

Next to him sat his girlfriend, Pam who quickly added, “I’m conserved. But I want to make decisions for myself. We want to get married and live in Santa Clarita and learn how to ride the bus out there. We want to be together.”

Her words, slow, then fast, then slow, then anxious – yet full of anticipation, made me momentarily still. I am not often caught off guard and freeze when talking in front of a group of people. I was in awe. I was blown away. I was sad – even angry. I wondered: why do we, as parents and society, not believe in possibilities enough?

Could a marriage not work out? Of course – as it is for so-called “normal” relationships. Could marriage be hard for a couple with special needs? Of course. But who are “we” to not keep the “I” in IEP, or the “S” or “self” in self-determination and self advocacy up front and center in all efforts to support individuals with disabilities?

This couple’s story made my heart sick. They have been together for two years, but have to “steal” away time just to be together. They must work with staff, transportation and other relative issues just to see each other. And this is just SO WRONG!

After further in-depth conversation about their circumstances this is what I saw for them and the group in general:

dreams

JUST SAYIN’

-          They were born in a time when society and the “system” told their parents they would never amount to much. In believing this, their parents continue to hold on to old ideas and beliefs about what is and is not possible for their adult children.

-          Holding on to old, limiting ideas, oppresses the very people we say we want to help empower. An “old school” view of I know what is best for you is outdated, lazy and – albeit with what I assume are good intentions – does not support inclusion and self determination.

-          While not all decisions can be made by those with disabilities because of safety, health, cognitive or other reasons, why is it all or nothing for so many who can? Why do we not try harder to understand and elicit their wants, needs and desires – especially those who have no voice or are cognitively more challenged?

-          This couple may indeed need conservatorships (I really can’t say,) but what I saw was two relatively articulate and focused adults who knew what they wanted.

-          They are not sufficiently supported in the process steps to making decisions for themselves. What about a limited conservatorship aligned with demonstrations of small successes? What about being “allowed” to get married even if they are fully conserved? Would that be a bad thing?

-          Steve helps to run this advocacy group! If he can do that, what else can he do?

-          As a child, Pam’s parents were told she would never read or write. Today she told me “I do both very well now as an adult. I can read and write!”

-          If she can do that, what else can Pam do? Why does fully conserving her necessarily mean limiting her liberties to love and make her own choices – and even mistakes?

-          I see (and in this case, imagine) that their respective parents mean well and are concerned for their welfare and safety, but why do they not support and respect this couple’s right to live their own lives? This goes for others in the room with their own issues as well.

-          This couple was willing (they said so) to do the work it takes to learn about marriage; what makes it successful; and how to go about creating that vision for themselves. Couldn’t staff help them with this process? Coaching, counseling, reading books, etc.?

-          Because the “system” and the parents do not believe in these very capable adults, in turn they are conflicted by the dream they have to be together and their belief in themselves.  It was clear that others in the room were also affected by naysayers and gate keepers – though one staff member told me in the parking lot when I was leaving that with respect to this couple, he felt they could be married and have success – which was my intuitive and observational hit without really knowing them as he does.

-          As a special needs community, we ask for “acceptance,” but digging deeper, what about those in our own community not believing in possibilities? This includes parents, caregivers, teachers, me, you, etc., who go with the path of least resistance and don’t raise the bar of hopeful expectations.

-          Some would rather over-protect and metaphorically strangle life, rather than let the flower bloom for fear of… (fill in the blank.)

-          While not all people with disabilities can make their own decisions and do need others to make decisions for them, this group was full of those who can and should be making (many) of their own decisions – and even their own mistakes!

dreams2

DREAMS

As I sit here passionately banging away on the keys of my laptop about this topic, my heart both sings and sighs. I have been guilty of not believing in BIG dreams for my own son. Though I had lots of dreams and goals, including independent living for him as an adult – I was fearful of daring to dream too big.

Just before Taylor turned 15, all that changed. One day out of the blue, he told me about his dream of making a movie. I was surprised to hear this. I knew he perseverated on film, but to make a film? After hearing him out, I immediately shut him down.

“You can’t do that! You have to go to film school. You are only 14. You need money to make a film.”

Bla, bla, bla, bla.

As I was saying those words to him, I glanced over and caught the discouraged look in his eyes. He believed every word I said – after all, I was his mother, his guide, his relative truth. And then, the voice in my head screamed “Yea, Keri, and they said he might never walk or talk.” I turned to Taylor, and said the following:

I BELIEVE IN YOU

“Taylor, every word I just said is a lie. You can make a film. I don’t know how to do it, but I will help you and we’ll figure it out together. What do you want to make a film about?”

We agreed upon the subject of autism – which we both knew well. A week later – as universal law allows, we met Joey Travolta who ended up mentoring Taylor in the art of filmmaking. Every step of the way, with calculation, together we wrote, researched, and worked on the process steps of each goal to making his film. His film became “our” film and through it we forged an entirely new relationship.

Normal_People_Scare_Me

WHAT IS NORMAL ANYWAY?

Normal People Scare Me, a 90 minute documentary film about autism went on to win numerous awards. The film took me and Taylor all over the world to share autism with others. It helped Taylor to learn to talk with others, to answer questions and to share his inner world, among so many other positive things. He learned the nuances of traveling, of doing television and radio interviews. He stood proudly to many a standing ovation, beaming with pride.

Normal People Scare Me continues to be used today in universities, high schools and other organizations as a teaching tool. My kid followed his dream to make a film, and his dream changed both of our lives forever.

Two decades after writing that first mission statement, today at 25, Taylor lives in his own apartment with limited supports. He is a very wise and capable young man who continues to learn how to problem solve. Much of what it took for him to get to where is today was all about The Art of Believing.

A couple of weeks ago, Taylor asked that I not attend his annual IPP (Individual Program Plan) meeting.

“I can handle this myself, mom.”

Was I nervous? Yes.

Did I really want to go? Yes. After all, he is my son, and people pay me to go to their IEPs and IPPs.

Did I go? NO! I knew if things went South, we could always call another meeting.

Taylor knew what he wanted. We had worked his whole life to get him to where he is today. He was asking for his ultimate independence, and that was a promise I made long ago. Would turn my back on the goal I had set all those years ago? No, I could not – even with this all-important annual meeting.

THE MOST POWERFUL MESSAGE… IT’S YOUR LIFE

This was a moment in time when I could show my son I respected all of his hard work. I helped him (and he eagerly agreed) to write a list of his goals he could present at his meeting, and he allowed me to share my ideas and even used some of them. In his list, we covered what he wanted to accomplish; what he wanted to say, and how he might say it. We’re working on his email skills, so I emailed a draft of our list to him. And in the end, I was able to show him in the most powerful message of all: I believe in you!

The outcome? The meeting went great; amazing even! Taylor did a stellar job. He got what he wanted and needed, and he is happy with the outcome. And I am a proud momma bear:>)

AND SO I SAY TO YOU WHO LOVE SOMEONE WITH SPECIAL NEEDS…

Let our children fail, fall and learn to get up on their own – while we – those who love them most – are alive to support, love and nurture them through the challenges of real life. Grace them – as you yourself have been graced – with the ability to make mistakes, fail, succeed, grow and triumph.

BELIEVE       

beautiful life

 

The ART of AUTISM and WORK-ABILITY

Rondell walks in breathless and panting as he plops his backpack neatly – with a thud – onto the floor. “I missed my stop. I am sorry.” he laments in an excited-yet monotone voice. He is fifteen minutes late to his job development work day on this near-Winter morning in Brooklyn. A mix-up in directions has Rondell anxious. “Don’t worry, you’re okay. Just take a breath Rondell.” Suzanne, his colleague and trainer responds in a comforting, motherly tone as she ushers him to the back of the house for a morning of yard clearing.

I am in the other room, listening. I have been awaiting Rondell’s arrival. A guest in the home of my friend Jodi, director of business development and front desk logistics manager of Great Green Cleaning, she asked me the day before to meet with Rondell. “He has autism, and who better to talk with him than you?” she explained. “He’s new on the job and we are training him – working with his special needs in mind. We want to make sure everything is okay for him at home and on the job. He’s like family to us.”

More than her request that I talk with him, it is seeing a small company like Great Green Cleaning willing to give a great guy a great break that causes a sweet chill to prickle my skin. Knowing Jodi and her boss, Cindy LeBow, Senior Manager of the Brooklyn-based, environmentally friendly cleaning company, it is intriguing but not surprising that they’ve hired a young man with autism to be one of their crew.  That’s just who they are as individuals and a bright company with clients such as 3 D Rock, Lifespire, MTV Productions, Misnomer Dance Theatre and Studios to Go – to name only a mere fraction of their satisfied clients.

We are a group of people that want to make a difference in the world, by doing business with honesty, integrity and compassion.”

This vision of Great Green Cleaning is clearly more than just a string of shallow words that sound good to would-be clients. For them, making a difference is the way to do business. At Great Green, employees are trained to understand the special needs (both literal and figurative) of its individual and collective clients. Training includes how employees communicate with clients, no wearing of fragrances while on the job, and using only cleaning products that are earth, pet and people friendly solutions and technologies.

As for their employees, there too they put words into action. Their mission is to create a supportive educational work environment wherein each individual may grow and thrive contributing all of themselves and their life experience, while joyfully creating a successful income. I see that Rondell is in good hands.

How cool is that?

So back to Rondell… who will not talk with me until all his work is done. He has been told by Jodi that it’s okay to talk with me during his working time. We are to talk about future goals, transitions, and life skills such as banking and bookkeeping. But Rondell is highly focused on his job before wanting to chat about personal issues. Not that he doesn’t want to talk about himself – he does. But not until the last detail of his work is completed. How’s that for commitment?

When the yard work is done and we are finally able to sit down to talk, a smile curls upwards on my lips. I feel a special kinship to this beautiful, young, twenty-something man. Rondell is very close in age to my son, Taylor.  And like Taylor, he is out in the big hustling world making a way for himself – finding successes and challenges – standing tall and falling down – all with a crew of amazing supporters and advocates. This fact makes me wonder with a tinge of bittersweet sadness what it would mean to hundreds of thousands of other self-advocates, mothers and fathers around the globe if these advocates and parents had the advantage of such compassionate support, patience and acceptance of differences in the workforce.

I have heard it said that the measure of a society is how they treat their elderly, disenfranchised and disabled… I reflect upon the measures of our society.

While in recent years society appears to have made some in-roads to Micro Enterprise and workability, there remains a gaping hole in job availability, job development programs, and treatment of disabled employees. According to the Labor Department, a staggering eight of 10 working-age Americans with disabilities are out of the workforce entirely. The good news is that companies such as Walgreen’s, Best Buy, Toys R Us and Lowes have stepped into the limelight in recent years for hiring people with disabilities. The bad news, however, are the allegations (against Walgreen’s for example) of how disabled employees are treated once hired. This mega-chain has been accused of requiring their employees with disabilities to work beyond their limitations if they want to keep their jobs, amongst other complaints.

And so we have a long, long way to go toward improving job and development opportunities for individuals with disabilities. Sadly, today Americans with disabilities are twice as likely to end up in poverty. We continue to see those with disabilities facing discrimination in the workforce. And more and more, we hear about someone’s adult son or daughter staying at home during what is for most a work week, playing video games, trolling social media sites, and generally segregated from friends, community and workability. From my window, this phenomenon appears to be getting worse, not better. And so it is with awe and appreciation that I hail the efforts of a small company such as Great Green Cleaning for taking their initiative in taking on one of our own to train, inspire, and include as a member of their family.  I challenge other small companies to consider this vital role, and what it could mean for YOU!

As employers know, good business decisions must prove successful if they are to be sustainable in the long term. As Great Green Cleaning has discovered, the measure of its success is often determined by a more flexible yardstick: in this case, an eager and determined young employee who is doing a great job, and the viable community service this company provides.

At last, Rondell and I are able to talk, delving into his dreams and ideas for his future. He shares with me that he’d like his future to include more hours with Great Green Cleaning, to learn to be solely responsible for his own financial and monetary affairs (currently he’s under a guardianship), and to make a difference in the world with “one cleaning at a time.”  He then wraps it up by projecting a confident smile as I offer to teach him what a self-advocate is, what it means, and how he can become a better self-advocate to ensure his future as he grows into the dreams he has for himself.

It was a wonderful day. Way to go Rondell! Way to go Great Green Cleaning.

New York City and burrough dwellers: for more information on Great Green Cleaning, and how 10% of your first cleaning discount will be donated to The ART of AUTISM, contact: contact@GreatGreenCleaning.com

HALLOWED ARE “WE”

By Keri Bowers

In the aftermath of Hurricane Sandy, as a major metropolis attempts to regain its momentum, infrastructure and equilibrium, I sit this Halloween – a very cold evening – on the stoop of a Brooklyn brownstone.

A JUXTAPOSITION

I watch as children in costumes, flanked by loving, diligent parents, trick or treat on 5th Avenue. A girl of about 5 catches my eye. She sits on top of her daddy’s shoulders. Happily and excitedly squealing, she calls out the inaudible names of the children whom she knows gathered across the street at a Halloween event. I am amused if not enlightened. She is wearing a Snow White costume with a Batman mask. I cannot help but smile at the juxtaposition of her chosen costume.

All that is light and good (and dare I say, great marketing on Disney’s behalf) in contrast to the dark mask of a mega-superhero in whom we find victory because he inevitably saves the day… I think we all want for our days to be saved. I chuckle and smile. I thank the powers that be, thinking about life and how simple it is – and yet how hard it is at times.

I am warmed, despite the chill in the air, when little Snow/bat’s daddy nods and smiles in my direction. I cannot help but smile back and repay a nod of approval. I wish I had my camera. I want to take a photo of her on his shoulders. This is a Kodak or Fugi moment for sure. In a very odd way, this child reminds me of what is and what is not real.

A day and a half after the biggest Sandy storm of destruction in decades in Manhattan, New Jersey and Brooklyn, life goes on. Children laugh with delight in asking strangers for candy (there’s another blog about that all by itself, right?) They know not about the forces of nature and the consequences of strangers. They just “are.”

And so this itsy bitsy girl has no idea how she affects me. Halloween continues and children smile, laugh and giggle. They are so young an innocent. They do not know or understand that in these past days people have lost their homes, power, paychecks, and even their lives.

Trick or treat! They delight… It is awe-inspiring to imagine myself way-back-when. Childlike; unaware that life is hard, only asking for candy from a stranger.

TOGETHER IN TIMES OF TRAGEDY

And yet somehow people come together in tragedy. In these times, we tend to forget our egos. We put our personal agendas aside – for at least a day or two – and we reach out to others. We pull together in disastrous times like we do in no others.

I remember when I lost my home in the ’94 earthquake in California, people came together. Strangers. Neighbors we never said hello to came together at our invitation to eat the food that would otherwise perish. The streets, our homes, the power. It was a mess. Yet all the neighbors came, bonded as one.

The we watched after 911 as people came together to support one another. Unity, as if we were one. I amuse myself with the thought that If we could all remain child-like, loving, forever…we would always “be” together and help others. We would always trick or treat.

METAPHORS AND AUTISM…

Metaphorically, this reminds me of autism and our community. It is a bitter-sweet juxtaposition of love, life, and the sweetness of pulling ourselves together in the midst of the unimaginable sorrow, despair and challenge that follows a diagnosis – a metaphor for the storm… Hopefully – in times of struggle – we do indeed pull it together and become the best versions of ourselves, leaving if only for a moment, our fears behind to bond and unite with others.

We become the girl in the Snow White dress and the Batman mask. Together, we are invincible.

In autism, we walk a path solidarity, hopeful as a united front. This is the path of “ISM”where we help one another to share resources, support, and stories. Yet we also put on our respective masks. The hero… The light that overcome the darkness… or sadly, the victim… We choose on some level who we are and who we will be.

WHO ARE YOU CHOSING TO BE?

Hopefully we attempt to be positive. Whole, present and proactive as is the driven snow of Snow White. To create a future of possibilities, we cannot indulge in the mask of the antagonist of this real life drama. We must become the lead player in possibilities.

100 THINGS TO DO BEFORE YOU DIE

Weeks ago, I had put together a group of amazing friends and colleagues to walk together in the Village Halloween Parade for autism. To my knowledge, no group has ever walked in this parade for this particular cause. The theme of the parade this year was “Tick Tock.” Our banners were intended to read: “Autism is Timeless” in keeping with the parade’s theme. But the best laid plans, as they say, were not to be.

Slated as one of the 100 things to do before you die, the Village Halloween was canceled this year as everything downtown of 34th street was flooded and/or electricity was defunct and no mass transit was available. A change in plans, and I am reminded how plans change. Despite our intentions, our plans have changed and we must change with them. And so, “Hallowed are we.”

When we learn our child has autism, all plans change. None of our dreams, our plans are so-called real anymore. Fate knocks upon our door and tells us there is something different in store for us. No, you are not going to the left… instead you are going to the right.

And so we adjust. We put on our masks and brave the upcoming storm.

ONE PERSPECTIVE, MINE…

Putting this all into perspective for me is important. I have had one hall-of-a year. I have lost most of what was dear to me. My home, my livelihood, and some family. My son is 23 and still needs my support and unconditional love – not to mention my intervention. Autism does not go away. It transcends. It does not look, at 23, like it looks a 5, but it is after all, autism.

My friends have been constant. For that, I am grateful, thank and adore them. But that does not change the fact that plans change and I must put on a costume and mask to be in the world. My loved ones just want me to be okay. Mostly I am okay, but sometimes I am not. Despite this facts, I too, can trick or treat in the storm.

What has been your storm? What mask do you wear? How have you come together to create support?

The ART of Dr. Stephen Shore and Momma Drama

By Keri Bowers

MOMMA DRAMA!
“Hey momma drama… Are you coming to class on Sunday?” As usual, Stephen’s tone is warm, animated and inviting. “Yup. I’ll be there. 9:00AM.” I reply.

“Student reports, and then free time…” he says with a silly bend to his voice. I know exactly what he means; “free time” for Stephen means a “stim fest” as he calls it. This is a time when we get to engage in a free-for-all collaborative and lively discussion on the nuances of autism, life and the pursuit of happiness. I love these opportunities to stim. I’m stoked and happy to brave the subways with the imminent hurricane Sandy on its way to New York to see Stephen… errrr… Dr. Stephen Shore.

Upon arrival at 75 Varick Street and just before I enter the building, I am pulled back to his salutation: “momma drama.” Stephen penned this name for me a few years back. I adore this term, but also shrink when I hear it. Am I in my drama? I always try my best to stay out of the drama when I talk with my good friend. He has an uncanny way of grounding me – mostly because he is so grounded. Not a lot of BS where Stephen is concerned. What you see with him, is what you get.

As the mother of a son with autism, I definitely go into drama mode at times. Just recently I’ve experienced chaotic drama attached to my son’s transition into his own apartment – all while I have been visiting New York, unable to “save” my son. Stephen takes it in stride when I mention the overall details of Taylor’s shaky transition and over-expenditures during the process of his move. “Yes, yes, that’s what young adults do.” he says matter-of-factly. Somehow this makes me feel better, and I am reminded that most young adults go overboard with credit cards, and other new-found freedoms of emancipation. He is right after all. And, as they say, “youth is wasted on the young.” Were you a totally responsible and able young twenty-something? I wasn’t.

Then, as if called to attention, I remember instantly what is important and what is not as Stephen reminds me that Taylor will grow from the current situation to be stronger and wiser.

I instantly discard my BS – and fears, and remind myself to be the best possible version I can be of myself: a mother who takes a breath, and believes in her son and his possibilities. I realize that I am grateful that I am in New York and that Taylor has the “opportunity” to get himself back up and on his feet – with supports from his team at the ARC. Sometimes as parents we save our kids when they need to learn to save themselves. I smile as I chant in my head one of my favorite mantras: every great athlete needs a coach.

Stephen is like that – a coach to many, and an amazing professor at Adelphi University in Manhattan.

THE ART OF EDUCATION

Stephen’s students – the final class of this term – file into the dimly lit classroom. The lights are off, and I am relieved by this because I am sensitive to florescents. As 21 animated, if not nervous students, chatter, write last minute notes, and deliver last-minute papers to the professor, I note I am grinning, intrigued by these people who are would-be-educators in the field of special needs.

The final assignment of the term is a group project based upon the collective and individual interpretation of an autobiographical book written by a person with a disability. Today’s finals include “Deaf Again” by Mark Drolsbaugh; “A Light in My Heart” by Young Woo Kang; “Nobody Nowhere” by Donna Williams; “ and “Hi, My Name is John: My Story of Autism and Survival with Learning Disabilities” by John Malatesta.

Can you spell “WOW!” I am impressed by the scope and diversity of the choice in presentations.

Of his students, I note that while some are shy and appear to be uncomfortable presenting in front of the class, most are enthusiastic and animated. Oh I am seeing possibilities for multitudes of kids who will be in their presence when they are in a classroom. I am in awe and inspired to bear witness to the power of education and how each of these individuals will pay it forward and touch so many lives.

Likewise, I am in awe of Stephen’s approach to each student’s needs and personalities. Leave it to someone with autism to share the finite skill of connection, understanding and nuances of special needs. And indeed Stephen is connected, supportive and very open to each students style and manner. I note that I am feeling more judgmental than him. Not in a bad way, just noting who I think will be the forefront leaders in their field.

As Stephen listens to each presentation – he takes notes on the merits of the individual and group composition, structure and attention to the assignment’s outline. I sit to his side, impressed with both the students and my friend and colleague. Both are illuminating.

As each group finishes their presentation, Stephen opens the forum up to a common discussion: “What did you take away from group 2… etc.?” he asks. Hands are raised and discussion follows. I spy excitement for what the students have learned in this 8 week course.

“I now understand what early interventions and why it is so important for people with special needs.”

“We are educators and should never attempt to diagnose our students. If we suspect something is amiss, or a student is struggling, we should go through the proper channels to recommend assessments.”

“My nephew has autism. Dr. Shore, so this course has been very personal for me. You have helped me know better how to appreciate and work with him. Instead of trying to shove foods down his throat and yelling at him about it, I now understand he has food issues. I am taking on different approaches to dealing with him based on what you taught me. I’m even helping my mother to understand we can’t force him to eat foods he is not ready to eat.”

And so on and so on and so on. It would have been wonderful for my son to have had such educated educators in back in his early days. Still, I am grateful for the advances in education and understanding about special needs. I am even more grateful that greater acceptance of differences is coming into view in schools and institutions.

Stephen – Dr. Shore – is a relative pioneer in advancing these causes.

ALWAYS SOMETHING TO SAY

Of course, if you know me, you know I had comments after each and every group presentation. No surprise there. I suppose that’s also key in why I am “momma drama.” I get a fire in my belly and want to share my strength and experience to those who might listen. Happily, Stephen not only invites me to share, but encourages it. Stephen is a true collaborator, always eager and happy to share the podium.
I feel energized as I share my insights with the students. It is a tangible experience knowing that I am contributing something important with these remarkable beings – seed planters – as I call the educators and professionals in this field.

The fervent, accepting nod of heads as I speak warms my heart. The way the students look directly into my eyes as they present their presentations also tells me that they get that I get it. For some reason, most all the students spoke looking directly at me, as if I were their target audience. Perhaps a visitor offered an outside inspiration to pump it up? Sitting in the front row, watching them as they look at me (or what? approval?) causes me to feel deeply connected to each one of them and their mission as educators. This is an awesome feeling for me – an odd, if not quirky visitor from California. This experience makes my morning at Adelphi University all the more blessed.

A NOD TO ADELPHI UNIVERSITY

Education – and moreover, continuing education is key. On a local, national and global scale, we still need more of it – much more. Yet the experience at Adelphi gives me great hope. I trust it will give you hope as well – that your kid and mine are coming into a place where there will be more opportunities, education and possibilities for this generation and the next – of those with disabilities. A time when educators teach possibilities and do not diminish children as they were often want to do in the past. A time when educators take all children into account and not just the cookie cutter kids who go along and get along.

I honor Adelphi University and other educational institutions who are at the forefront of making education in special needs a priority, and add, Adelphi could do no better than employing the experience and knowledge of someone who’s been there, done that: Dr. Stephen Shore.

Diagnosed with “Atypical Development and strong autistic tendencies” and “too sick” for outpatient treatment, Stephen was recommended for institutionalization. Nonverbal until four, and with much support from his parents, teachers, wife, and others, Stephen has been a professor at Adelphi University for several years now. His research focuses on matching best practice to the needs of people with autism.

In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, the critically acclaimed Understanding Autism for Dummies., and the newly released DVD Living along the Autism Spectrum: What it means to have Autism or Asperger Syndrome.

President emeritus of the Asperger’s Association of New England and former board member of the Autism Society, Dr. Shore serves in the Interagency Autism Coordinating Committee, Asperger Syndrome and High Functioning Autism Association, United States Autism and Asperger Alliance, and other autism related organizations.

I am so delighted to know and adore Stephen Shore- a man whom I adoringly call “moon man” for his love of the moon.
For more information about Dr. Shore’s work, visit http://www.autismasperger.net/bio.htm

GENIUS of AUTISM and the ART of COLLABORATION

Anticipation and unbridled enthusiasm filled the air at the Edison Ballroom in Manhattan on Monday night, as 14 honorees of the annual Strokes of Genius event gathered to share their exceptional talents in this part concert, part art exhibition event sponsored by the McCarton Foundation. This year’s exceptional honorees include artist, Stephen Wiltshire; artist, Trent Altman; animator/author, Dani Bowman; artist/animator, Justin Canha; singer/songwriter, Kyle Cousins; vocalist, Colin Brennan; singer/dancer/actor, Hunter Brown; dancer, James Hobley; painter/singer, Amanda LaMunyon; singer, Carly Ryan; musician, Matt Savage; singer/songwriter, Talina; singer/pianist, Ethan Walmark and rapper/singer, Rio Wyles.

The bustling energy and excited conversations taking place for two hours during the pre-event cocktail event was both intoxicating and infectious. In an aura of low lights, red carpet, artworks by Dani Bowman, Trent Altman and Amanda LaMunyon – along with oodles of yummy hors devours which freely flowed – Dani Bowman also flowed. Looking radiant as ever, and beaming with energy, Dani flittered about the room as if on a cloud meeting and greeting old and new friends alike.

LIKE MOTHS TO A FLAME

Seeing Dani work a room is always a special treat for me. She is like a bright, hot flame – attracting all who come into her presence to be drawn to her light. After a cheerful hug and photo opportunity with her and her family, I spoke briefly with her aunt and uncle, Sandy and Patrick Eidmiller, who are also her ever-supporting, witting managers. I was delighted to hear about Dani’s current collaboration with artist/animator Justin Canha and the fluid soulful singer/guitarist, Nick Guzman. The three of them are working on a new project called Hannah, with Justin story-boarding, Nick doing the music and scoring, and Dani at the helm of the animation. This project, like all that Dani touches is sure to be a hit. “Dani just eats it up.” Patrick tells me. “To be able to work with two extremely good and talented friends, and to give and get feedback from each other is amazing to see.”

At 14 years old, Talina is a singer/songwriter to watch. Her powerful voice and captivating stage presence draws you in. So too does her demeanor. “Talina rolls with the punches. I call them ‘curve balls’ that we purposely throw at her – and as a result Talina is very good at adapting to the life of a singer.“ says dad-as-manager, Lou Toscano who is clearly Talina’s biggest fan. He’s also a smart businessman. “When the kids come together to make collaborations and artistic partnerships, friendships last forever.” He goes on to tell me that he believes through organizations such as Genius of Autism and The Art of Autism, who recognize children and adults with autism for their contributions and talents in the arts, “One day we’ll find the next P Diddy, Celine Dion, or Picasso – here in places like this.” as he outstretches his arm and points to the vastness of the ballroom. I for one, couldn’t agree more.

STROKES OF GENIUS

Trent Altman, an artist who paints vibrant, expressionistic abstracts in acrylics and mixed media collages on canvas, and was a recipient artist of the United Nations Autism Awareness Stamp last April, looked quite handsome in his grey suit and tie. As he turned shyly but intently toward me, he appeared quite proud of the display of his original works arranged behind us. His large, colorful canvases were prominently featured, which was for me, a very special treat. I had never seen his original works before. Trent is one of the 77 artists featured in Debra Hosseini’s book, The Art of Autism; Shifting Perceptions. I had seen his works over and over while editing the 2012 edition of the book, and had seen a large print of his stamp painting “An Abstract Flower Garden II” at the United Nations, but I had never seen his original canvases in person. Mind blowing… Can you spell brilliant? I was equally excited to have him sign a personal copy of the book. His mother-manager, Jacqueline Marquette, a delightful mom, who is an autism transition specialist, held out her left and right pointer fingers about an inch apart so that Trent could make his mark in the book. It was wonderful to see this loving interaction, and I must say, for all my years in facilitating autism workshops, events and performances, I’ve never seen this done. Sometimes it is the simplest of things that just breeze by me! This is a strategy I will surely have an opportunity to use in the future

COLLABORATION IS KEY…

It is always a joy to talk with singer/songwriter, Kyle Cousins. We’ve produced a couple of collaborative Art of Autism and Autism Movement Therapy shows featuring his live performances with others on the spectrum. A true professional, it’s a treat to see (and hear) him rock out the house, or sing a heartfelt ballad. His writing is prolific, almost outdone, but not quite, by his charisma and charm. His momma-manager, Diane Cousins raised him well! Kyle, who was very excited to be honored at the Genius event was equally excited to tell me about his current collaboration with singer/songwriter/artist, Amanda LaMunyon.

“It’s a 50/50 collaboration, with Amanda writing the lyrics and me the music. While sometimes it can take me week or even months to write my music, when I see Amanda’s lyrics on the page, the music just flows out of me in minutes! It’s a very natural process to work with Amanda because her words are really well written and just flow forth. It’s also fair to say that Amanda saves me a lot of work – it’s so fulfilling to approach writing songs this way.” Kyle adds with a warm smile, “I think it is wonderful and a great opportunity to see those who happen to be on the autism spectrum perform and to see their hard work.”

I asked Amanda LaMunyon how she feels about her collaboration with Kyle. Her response makes it clear just why this is a collaboration of mutual benefit and intensity. “We have a long distance relationship. We did spend some time together last fall, and sang a lot of journey songs together. We seem to enjoy the same kind of music and we both just love to sing.” She goes on to tell me that Kyle is easy and fun to work with, and that it has been a process to learn how to work together from different states (he from Texas, and she from Oklahoma.)

I am very impressed by the fact that this team does not let miles or distance interfere with the quality or outcome of their work together. Would-be-moms-and-dads- as-managers TAKE NOTE! We can make friendships and collaborations happen across the country and across the globe with today’s technology.

Amanda goes on to say “I sent my lyrics to Kyle for our song, ‘Someone to Love.’ I left a couple empty lines and asked him if he wanted to put music with it. He did and sent it back to me.” Amanda then went into a studio in her hometown in Enid, and with the help of some very talented friends, put down some background vocals to the music. “It was really a learning process for me.” she confides. The pair only practiced for a couple of hours after arriving in NYC on Monday – just prior to performing the song live at the Strokes of Genius benefit… WOW!

And so what would Amanda say to other would-be musicians, artists and others on the autism spectrum? I am blown away by her response: “I write, sing and paint from my heart. I do enjoy when others see who I am through the arts because so many times I feel unable to express what I think and how I feel in a way for others to understand. I hope the message of the song we sang (at the event) came through even if someone slips into autism or any other difficult situation… Their biggest hope is for someone to love them enough to hold on for all times and to learn how to love in return.” Amanda is another one to watch in the coming years… Still so young, talented and so smart, right?

AUTISTIC AND SEEKING A PLACE IN AN ADULT WORLD

Turning a corner to a quieter part of the bustling ballroom, I spy Justin Canha, who earlier in the day was in his element, schmoozing and posing for fun photos with his peers. When I approached him, he was quiet, seated alone, texting or playing a game on his phone – appearing to be taking in the scene about him out of the corner of his eye. On approach, I asked, “Are you so proud, Justin? Congratulations!” He looked up, turning his eyes away from his gadget, and produced a big warm smile. “Yes. Thank you. I am so proud.” I have known Justin for many years now, and as an artist myself, I have to say I am in awe. Words cannot express how his art affects me. Suffice it to say I am a fan. His vision, his strokes, choice of lines, subject, negative and positive space, always surprises and inspires.

Just then, Justin’s mom-manager, Maria Teresa, and Justin’s ever-supportive life coach (and former client of mine,) Nicole Turon Diaz approach. Nicole works with Justin on a regular basis, accompanying him to shows, events, and public speaking. engagements (which they often do together) at local, national and international conferences. I could not help but to throw my arms around them both, giving them a big gushy hug. Gosh I love the amazing powerful women I am honored to know in autism advocacy! Especially moms who have been “doing autism” as long as I have.

Maria Teresa and Justin’s dad, Briant, have both tirelessly nurtured Justin’s creativity since he was a very young child, supporting him to become a world-renowned artist and a relative pioneer in autism and the arts. An article about Justin, “Autistic and Seeking a Place in an Adult World” written by Amy Harmon in September 2011for the New York Times, is, in my opinion, one of the best articles about autism ever written. Ms. Harmon received an award for the article this October from the Annie E. Casey Foundation, which underwrites NPR. Most especially, I was delighted to hear that Justin’s internship at Sesame Street was a success. I cannot wait to see what exceptional thing comes from him next!

MIRACLES HAPPEN EVERYDAY

At first, Rio Wiles of The Miracle Project seemed perplexed when I said hello to him. I have only seen him in Los Angeles, where he has often been a part of The Art of Autism shows, or at Miracle Project events. “Keri, Keri Bowers from the Art of Autism.” I say. He cracks a wide-tooth grin, saying “Oh… Now I remember you!” I couldn’t help but whisper to him that I was most eagerly awaiting his performance later – as I love this young man’s music. Rio is sooooooooo ready for the big time. His soulful raps are penetrating, well written and performed with a detailed passion. He did not disappoint later on in the evening when he commanded the stage and belted out his powerful licks to the audience’s delight.

A BRILLIANT MIND

Upon taking his onstage bow, Inspiration Award Honoree, Stephen Wiltshire flashed a smile so big it captivated the audience and could be warmly, if not physically “felt” across the crowded ballroom. When I asked Stephen what he thought about being honored for the Inspiration Award, he offered “It feels good, really good. I’m glad to be here.” Stephen’s cityscapes and panoramic architectural prints, which he often draws from memory (as seen in the exceptional short film “The Human Camera”) have indeed inspired many around the globe, none the least of which is me. My son Taylor and I had the privilege of interviewing Stephen in his London gallery a few years back for our film, ARTS. Ever humble, and quite matter-of-factly, he warmly shared each detail of the inspiration he himself found in creating each piece of work he showed us. He also shared – as our welcome and parting gifts – his infectious, inspirational smile.

I wish there had been more time for me to meet and greet all of other the honorees, but alas it was time for us to take our seats downstairs in the ballroom. Placed at table number 1 with the ever beautiful Elaine Hall, founder of the Miracle Project, and with my dear friend, Aaron Feinstein, Director of the Miracle Project New York/Brooklyn, and founder of Action Play, our view to the stage was outstanding. Though I felt quite sad that I did not get to meet all the of the honorees, in lieu of personal introductions, I found the performance aspect of the show to be chill-inspiring. Outstanding, actually. Choreographed beautifully, this was a not-to-be missed event.

SOMETHING MAGICAL

There is something magical that happens when the lights go up and the audience awaits expectantly for the performance to begin. For those with autism, it is often the case that no matter what has gone on in their day, whatever challenges or distractions they experience before or at the moment of no return, when they must step into the light – they walk tall, erect and proud onto the stage to give us their hearts and passion – a gift for us to see, hear and behold. For me, as a producer of similar shows, this is a moment of powerful magic.

There is a relationship that occurs between the performer and the audience in the light. I witness a quiet internal release that comes forth in the performers the moment the dance begins, the song is sung, the words uttered, or the instrument played. It is a metaphoric – if not literal dance – where autism is invisible and grace is all we see and feel. It is also a moment when we, as moms, dads, uncles and aunts-as-managers and collaborators swim in joy and know without any doubt that the time we spent nurturing our children, caring for their fears, supporting their quirks and growing their passions is rewarded as we witness these incredible moments. There is no better way in my opinion to raise the self esteem and socialization of children and adults as I have seen occur in the arts.

By the by, I must say that I have witnessed kids with no language or obvious grand talent also experience the rich rewards and esteem of being part of a group up on stage with everybody else. This type of thing occurs everyday, for example, at The Miracle Project. So if you are thinking “Yea, Keri, well my kid has no obvious talent.” then I sweetly and emphatically encourage you to reconsider your own personal vision for your child.

INSPIRATION BEHIND THE INSPIRATION

Sponsored by the McCarton Foundation, The Genius of Autism event was originally the brainchild of Dr. Rosa C. Martinez who is the Founding President of Strokes of Genius. Talking with Rosa is an exciting adventure. She is so full of compassion and enthusiasm for her work with individuals with autism, it is compelling and telling.

In 1986, Dr. Martinez began teaching six students with classical autism. Each year thereafter, she found a puzzling detail: although her students appeared to be “in their own world” and had no obvious understanding of the world around them there existed uncanny artistic talent amongst them. One student played brilliant concertos on the auditorium piano – that is when she could run away to sit at the piano bench. Another ran over to a lady sitting on a park bench during a school outing and tapped her broach naming the sound that resulted as the key Fsharp. He turned out to have perfect pitch. Another would take apart and unscrew everything in his path in seconds – including the toilet! Still another drew bridges with architectural accuracy even though he had never seen them.

Rosa told me “Everyone knew about the disabilities, but no one knew or understood the abilities.” She realized that the arts were synonymous with social communication and thereafter created Strokes of Genius – to share the diverse talents of those with autism and provide a comprehensive vehicle for inclusion and societal contributions.

This January, The McCarton Foundation will launch Dr. Martinez’s inaugural branch of the “Train The Talent” (TTT℠) Art Studio at the McCartney School. They will offer art classes designed to cultivate the artistic talent of young people on the autistic spectrum. The fine arts program, developed by Dr. Martinez, creates awareness of “ability” rather than the “disability” associated with autism. Strokes of Genius is a non-profit organization that empowers individuals on the autism spectrum. Dr. Martinez curates art exhibitions in the United States and has featured the artwork of luminary artists including Temple Gran din, Donna Williams, Stephen Wiltshire, George Widener, Kevin Hussein, Gregory Black stock, Ping Lina Teak among many others. Dr. Martinez, who was the editor of the original Art of Autism book is truly an inspiration to all of us. Be sure to Google Dr. Martinez if you’d like to learn more about her program or contribute your support.

INSTINCTUAL REFLECTION

I reflect upon the evening, smile and think back to my own story with my son, Taylor. I am reminded of a day, back in 1989 when I was painting on a large canvas. Taylor – who is now 23 – was six months old at the time and could not bear for me to touch or hold him. There was no autism mentioned on the front page of newspapers in those days, no internet, and there would be no correct diagnosis for him for six long years of seeking answers to understand Taylor ‘s bazaar quirks, delays, and multiple challenges. Suddenly an instinctual urge filled my head and heart.

My inner Goddess cried out to me: Put paint on Taylor’s little finger tips!.

I began to splay yellow, red and blue paint on his fingers. Cupping his noodle-like hypotonic body firmly in my arms, I faced him toward the canvas as he struggled to get free of my hold. Not relenting, I grazed his finger tips across the canvas – with traces and waves of color bursting forth. He did not like this, not one bit.

The “committee” in my head (as I call them) admonished me: What are you doing, Keri? What the Hell? My girl Goddess, far more wise than my annoying, nay saying committee replied, You don’t need to know, Keri. Just keep doing it. After many times of repeating applying paints to Taylor’s hands over the next months, he began to accept the paint on his hands. As he grew he even began to enjoy the feel of the paint and making swirls of color on canvases. Today – duh – we call this sensory integration.

I went on to work with Taylor in drama, music, dance, and other forms of creative expression, I’d sing social stories to him. Ultimately, the crowning achievement – as he says today – was the making our film, Normal People Scare Me. “Making this movie changed my life, mom.” he recently told me. The early work with Taylor in the arts naturally led me to work (now for over 20 years) with others on the autism spectrum in the arts. Through the various programs I created over the years I have had the privilege of meeting some of the most awe-inspiring individuals, parents (read managers), an others – who continue to inspire me and the work I love.

UPDATE

Taylor moved into his very own apartment a couple of weeks ago. I am so proud of him, his efforts and hard work. Though Taylor continues to struggle with many things, he also has an amazing attitude towards his life, who he is and what his limitations are (at least for now.) Taylor hopes one day to be a writer. I hope he will see that happen for him. And so I dedicate my words in this text to him – he who is my muse and inspiration – with a shout out to his little brother, Jace (The Sandwich Kid) who is always there to support Taylor and me in my work in autism.

Of the fourteen artists honored at Strokes of Genius, we at The Art of Autism are excited and proud to note that five of them are a part of The Art of Autism Collaborative, including Trent Altman, Dani Bowman, Justin Canha, Kyle Cousins and Amanda LaMunyon.

Debra Hosseini, my partner and long-time friend has been the main force behind administrating a collective vision for The Art of Autism. She has worked diligently to build the collaboration of artists who are a part of our organization, and to curate dozens of art shows throughout the country. Nothing is lost on Debra, especially the affect of this event and what her efforts mean to our global community. Yet she is humble and will often tell me “It’s all about the artists.”

DEBRA HOSSEINI ON THE GENIUS OF AUTISM

“The Genius of Autism is a wonderful event for bringing positive attention to talented individuals. All people on the spectrum have a divine spark of creativity. When we as parents nurture the gifts, we will see our children blossom. Everyone who participates in our project, The Art of Autism, is a star and deserves recognition. My wish is to see autistic people use their talents in their professions so they can sustain themselves. The more society opens their hearts to diversity, the more enriched our world will be.”

So true…

CHIEF COOK AND BOTTLE WASHERS and SELF ADVOCATES ALIKE…
How lucky we are to be in collaboration with one another on a joint mission to expand our understanding of the importance of the arts in autism. We are momma and papa-bear autism advocates/managers, chief cooks and bottle washers. Working with you who are self-advocates is our mission – our passion. And we adore you! We are proud to know you and to watch as your art and popularity grows. Your ability to express through art, music, dance and other creative mediums warms the world. Your art expresses what words sometimes cannot convey, and we see and acknowledge the illumination and support you give to others through your work.

For those of you not yet a part of our collaboration which is now 260 artists with autism strong, we extend an invitation for you to join us as we show the world a part of autism that exudes grace, beauty and talent. Contact us at www.theartofautism.com

…with special and warm thanks to Kelly Green, Autism Highway, Joanne Lara, Autism Movement Therapy, PAUSE4kids, Elaine Hall, Diane Isaacs, Aaron Feinstein, The Miracle Project, Yehudis Silverman, Eli Laber, The Friendship Circle (Agoura and New York,) Linda Gund Anderson, and all the mothers we know (you know who you are) who love and support your children everyday of their lives!

Never say Never 10 YEARS AFTER: Abilities Awareness Program Wins the Phoebe Apperson Hearst National PTA Award for Excellence in Education

A decade ago, I was told by an administrator in my son’s school district that a disabilities awareness program could never be facilitated at the middle school level because, as he put it, “Those kids are too self-involved and won’t be receptive to learning about their disabled peers. Such programs are better left to grade schools” Well, I was never one for stopping at the first “no”.

With the challenges of a fully included autistic son at middle school, I believed a comprehensive program had to be created.. I believe that now as much as I did then.

Why can’t young teens learn about disabled children I wondered? I was sure they could and would want to learn about differences. My faith in youth became my mission. I decided I would bring an awareness program to my son’s middle school despite the warning.

In early fall, 2001, I approached the PTSA President and asked to have my idea for an Abilities Awareness program placed on the agenda at the next meeting. She agreed. Upon hearing my proposal, the members of the PTSA unanimously voted to have the school host the program. This was an important start, and I recall how delighted I was – and relieved – that they were so receptive. Though I still had an uphill battle – I was left to create the p program on my own.

It was not so long ago that children with disabilities were segregated from regular campuses and classrooms. Even with all of the progress we’ve made in the last two decades, there still exists tremendous prejudice and resistance to inclusion in the mainstream. Though we have made tremendous strides in providing a free and appropriate public education for kids with special needs, many of the greater issues are still often ignored, underfunded, and dismissed. Kids with special needs continue to be segregated by typical peers and astonishingly, the system that supports them: read: educators and administrators.

While the students my son attended school with were generally respectful to him, they had never really included Taylor in their activities. They made fun of the weaker kids too. Back then, I wanted to help to bridge that gap. I wanted to teach the typical peers who did not fully appreciate my son’s place in their classrooms about kids like Taylor. I also wanted to help the school’s 100+ other special needs children to better fit in – to be understood.

Abilities Awareness took an entire year to plan. I wanted the students, administration and staff to have ownership of the program – and for that, they needed to be involved from the start. It was easy to enroll the kids. Not so easy to enroll admin and staff. I met with students twice per month to teach them about disabilities and to lend my vision to their own creative ideas. Occasionally PTA members or staff would pop their heads in to see what we were up to. I worked collaboratively with the kids I had enrolled to be a part of the program (ASB and other student unions) to design and promote the program, which culminated in a year-end, two day facilitation of “Abilities Awareness” for the school’s entire student body – comprised of 1200 students!

Abilities Awareness was a hands-on educational program that worked to inform and educate “typical” kids about the special needs of their disabled peers. The week prior to the two-day program, we presented students with written exercises to prepare them for what was coming next. During the program itself, we gave them an orientation in the gym (during their P.E. periods), and then had them segue 12 “sensory stations” which included wheel chair obstacle courses (gross motor), blindfold baseball (sight), backwards mirror writing (perception and hand-to-eye coordination), binoculars used backwards while walking a curved line (perceptual), mittens used while attempting buttons and zippers (fine motor), and other fun activities. I wanted the kids not just to hear about disabilities, but to experience them firsthand, and that, they did.

I was so proud that year when we won the 2002 Phoebe Apperson Hearst National PTA Award for Excellence in Education – the highest PTA honor in the country for “best in program.” We won both State and National awards. But better than that was the program’s impact. The knowledge 1200 kids gained during the event was a sight to behold. I believe we lived up to the vision of the PTA founders’ ideals that the power of individual action, and work beyond the accepted barriers of the day, and our action, can (and has) literally change the world

As for that administrator, to this day he has no idea what an inspiration he was to me. As they say, never say never!

The award, and $2,000 check helped this program to survive beyond all expectations. This year, Redwood Middle School in Thousand Oaks, California will celebrate the 10th anniversary of Abilities Awareness. Although I have been out of the loop, and others have carried the mission and values of the program forward, I will always be reminded to never say never!

Footnote: I recently opened a new bank account. Upon seeing my business card which reads “Normal People Scare Me,” the teller asked, “What is that?” I told him I made films in autism. He said “Oh, I know about that. I learned a lot in my middle school about autism.” I sheepishly asked him what school he went to. He told me it was Redwood Middle School. I smiled. He went on to say “I don’t remember much about middle school except for this program I went through to teach me about special needs. I remember learning to be more accepting of people who are different.” I was now nearly on a cloud. I said “Yea, that was Abilities Awareness, a program I created for this very moment in time.”

Keri Bowers is the founder of PAUSE4kids a non-profit organization in Thousand Oaks, California. Founder of Normal Films, she has created 3 documentary films, including Normal People Scare Me, The Sandwich Kid and Arts. Co-creator of The Art of Autism, Keri is an international speaker, author, filmmaker and advocate. Her son Taylor, now 23, lives in independent living supported by the ARC of California. Her son, Jace , now 17, continues to volunteer in special needs and siblings issues. www.the-art-of-autism.com and www.normalfilms.com

ALPHABET SOUP, By Debra Hosseini

No wonder autism moms feel isolated and alone. Listen to this conversation I recently overheard at the park. You have to learn a different language to speak autism-mom talk. Don’t worry there is a glossary at the end.

Mom 1: Does Matt have an ASD diagnosis?

Mom 2: Matt hasn’t been diagnosed with ASD – he’s PDD, ADHD, LD, and has SID.

Mom 1: What kind of interventions have you done?

Mom 2 : Traditional ABA with DTT then switched to PRT.

Mom 1: Are you doing RDI? That’s really good for socialization.

Mom 2: Yes, we’ve also done RDI, but I prefer DIR – it’s more child friendly. The best thing I found for Matt was the SCD diet, we did that after GFCF. Our DAN Dr. introduced us to the SCD. We also did IgG.

Mom 1: Did you do IgG with an IV?

Mom 2: Yes, I read a study by the NIH about IgG for children with ASD. The children were rated by the ABC and then scores compared to their IgG levels.

Mom 1: Hmm, interesting. We have Kevin on an SSRI that helps with his anxiety. He had an EEG and it didn’t show any SZ’s. I was worried about SZ’s. Do you have the SCD as part of Matt’s IEP? I think IDEA allows for dietary inclusions.

Mom 2: No, it is in his IPP. The SC at TCRC suggested we add it to his IPP. We did an ATEC from the ARI website and Matt improved with the SCD. We also added EFA’s to his diet.

Mom 1: Really? Kevin has behavior problems. He’s on the GFCF diet. He has GI problems and IBD. Maybe we should try the SCD. I heard good things about the BED diet. Have you?

Mom 2: Yes, I may try that one at another time.

Mom 1. Couldn’t hurt. We added a BIP as part of his IEP. His OCD was causing problems in the class. We had to do a FBA. The school district hired a BCBA from CARD for consultation.

Mom 2: That must have been expensive. Is Kevin in a SPED SDC class?

Mom 1: He’s in the LRE – a regular ed class with a TSS. He’s getting FAPE.

Mom 2: Does he use any kind of AT?

Mom 1: He uses FC; the TSS has been trained on FC as part of an AT training at the SELPA. We did an ATA to determine that he would benefit from FC.

Mom 2: Our SLP works with PECS.

Mom 1: Does that work? The school district likes the TEACCH method, but I don’t care for it.

Mom 2: It seems to help. Matt responds well to SS’s and we just got him an IPAD. We put that in his IEP.

Mom 1: I hear there are good ASD APPS for IPADs

Mom 2: Yes, I heard that too.

Mom 1: Do you have an OT as part of your MDT?

Mom 2: Yes, and Matt receives SI as well.

Mom 1: I went to a training class on SI that was offered by the SELPA.

Mom 2: Our LEA doesn’t offer that type of training.

Mom 1: I’m worried about the DSM-V and the new classifications.

Mom 2: Me too. I don’t know why they want to change the DSM IV. Do you receive IHSS?

Mom 1: No, our family makes too much money. When Kevin is 18, he will be eligible for SSI. We want him to be in Inlv. I heard the DDS is making the RC’s cut their budget.

Mom 2: I heard that too. I hope ARCA is lobbying against the cuts. What does Kevin do for ESY?

Mom 1: .The school district offers a short program. We have some fun SI activities planned for the summer. How about Matt?

Mom 2: We’re going to work on a PTP for him over the summer. He’ll be 18 in November. I want him to be able to pass the CAHSEE.

Mom 2: Look at that NT over there. (Mom 2 points her finger in the direction of the sandbox. They both look at a little girl playing in the sand.)

Mom 1: Do you think she is really a NT?

(The little girl starts flapping her hands)

Mom 2: She looks a little stimmy.

Mom 1 (sighing) Yea, NDA’s are rare these days.

Mom 2: She’s probably NDY.

Glossary

ABA – Applied Behavior Analysis
ABC – Autism Behavior Checklist
ADHD – Attention Deficit Hyperactive Disorder
ARCA – Association of Regional Center Agencies
ARI – Autism Research Institute
ASD – Autism Spectrum Disorder
AT – Assistive Technology
ATA – Assistive Technology Assessment
ATEC – Autism Treatment Evaluation Checklist
BCBA – Board Certified Behavior Analyst
BED – Body Ecology Diet
BIP – Behavior Improvement Plan
CAHSEE – California High School Exit Exam
CARD – Center for Autism and Related Disorders
DAN – Defeat Autism Now
DDS – Department of Developmental Services
DIR – Developmental Individual-Difference Relationship-Based Model
DSM – Diagnostic and Statistical Manual
DTT – Discrete Trial Training
EEG – ElectroEncephelogram
EFA – Essential Fatty Acids
ESY – Extended School Year
FAPE – Free and Appropriate Education
FC – Facilitated Communication
GFCF – Gluten Free/Casein Free
GI – Gastro-Intestinal
IBD – Irritable Bowel Disorder
IDEA – Individual with Disabilities Education Act
IEP – Individual Education Program
IgG – Immunoglobulin G
IHSS – In-Home Support Services
Inlv – Independent Living
IPAD – tablet computer designed by Apple
IPP – Individual Program Plan
IV – Intra-venous
LD – Learning Disability
LEA – Local Education Agency
LRE – Least Restrictive Environment
MDT – Multi-Disciplinary Team
NDY – Not Diagnosed Yet
NDA – Not Diagnosed with Anything
NIH – National Institute of Health
NT – Neuro-typical
OCD – Obsessive Compulsive Disorder
OT – Occupational Therapist
PDD – Pervasive Development Disorder
PECS – Picture Exchange Communication System
PRT – Pivotal Response Training
PTP – Personal Transition Program
RC – Regional Center
RDI – Relationship Development Intervention
SC – Service Coordinator
SCD – Specific Carboyhdrate Diet
SDC – Special Day Class
SI – Sensory Integration
SID – Sensory Integration Dysfunction
SLP – Speech and Language Pathologist
SPED – Special Education
SELPA – Special Education Local Plan Area
SS – Social Stories
SSI – Social Security Income
SSRI – Selective Serotonin Reuptake Inhibitor
Stimmy – self-stimulating
SZ – seizures
TEACCH – Treatment and Education of Autism and Related Communication Disorders
TCRC – Tri-Counties Regional Center
TSS – Therapeutic Support Staff

Continue reading on Examiner.com Alphabet soup: autism mom speak – Santa Barbara Autistic Art | Examiner.com http://www.examiner.com/autistic-art-in-santa-barbara/alphabet-soup-autism-mom-speak#ixzz1owwvM2TE

WHAT IS NORMAL ANYWAY?

As he looked up through the moon roof of our car, Taylor’s face lit up quick and bright as a flash. Excitedly, he began to bob up and down, frantically waiving his arms up and outstretched through the roof’s tiny opening which framed the stars and the moon like a picture against a deep blue canvass. He was barely able to contain his frantic little body as he pointed up to the round, silver object and cried out in amazement: “Look Mommy! It’s the big tiny moon!” And you know, it was big. And it was tiny too.

That was the first time I can remember my son putting a string of words together in a powerful way that resonated deeply within me. It would be a couple more years until Taylor would be diagnosed with autism and his funny manner of speech, sensory and behavioral issues would all finally make sense to me – at least to the degree that anyone can make sense of autism.

Ice Cream! Ice Cream!

The ice cream truck came rolling slowly down the street, that familiar jingle blaring loudly on its speaker. Like Pavlov’s dog, I had been conditioned as a child to run to the curb for ice cream when I heard that old familiar tune. Now, Taylor was well conditioned by it as well.

“Mommy! Mommy! Ice Cream! Ice Cream!” Without thought or hesitation, Taylor ran from the house out toward the curb, naked, bare to the world. I gasped with horror. “Oh my God! He’s naked in the front yard.” More than a little bit ashamed, which I’m loathe to admit it, I was not so much distraught that he was standing at the curb naked, but rather I was worried what the neighbors would think. Fitting in to my neighborhood “norm” was especially important to me in those days.

Taylor was six years old then and was easily at least or more a foot taller than other boys his age. He had always been quite tall. “In the 120% range” his doctor had recently told me with some surprise. Taylor looked to be a boy of at least eight, maybe even nine. And there he stood, not appearing to be six years old, but older. A boy who by all appearances, should have known better than to appear in public in his birthday suit.

It was often that way for me and for Taylor. People would look at us in “that” way – a slight tilt of the head, told me they were trying to make sense of this strange boy; trying to figure out what was different about him. His awkward speech, disconnected gaze, repetition of topics like roller coasters, indifference to people, and questions that came out of the blue – starting and ending in no particular order. How odd he was. So not “normal…”

When people looked at Taylor (us) in that perplexed way, they reminded me of little puppy dogs cocking their heads to the side while trying to figure out what was being said to them. “Strange” as I often overheard grownups and children say.

“Here! Here! Ice cream, ice cream!” Taylor cried as the truck came to a stop in front of our house. Then I heard it. The laughter rose up and like a knife, it cut into my heart. The boys next door were laughing at him – laughing their asses off. My heart sank. I wanted to save him.

At hearing their laughter, Taylor only became more excited. He jumped up and down, clapping his hands. So sweet and naive he was, he thought they were laughing with him. He interpreted their hysterics as equal enthusiasm to his own at the ice cream truck’s arrival. It was clear he thought they were laughing with him – not at him.

If it’s possible to die a thousand deaths, I did so in those moments. I didn’t so much feel pain that he was naked, and it wasn’t even necessarily the fact that he was being laughed at — though that hurt like hell, but rather it was the fact that Taylor was so innocent I feared the world would swallow him up and that he’d be the one to offer the world the knife and fork to eat him with.

The Sweet Bitter, Bitter Sweet, No Nonsense Truth

Katherine Sammons sat opposite me at the table dominating the relatively unimpressive room at the impressive, even intimidating U.C.L.A. Neuropsychiatric Hospital.

“Well, we know what’s wrong with Taylor.” she said.

“Oh my God.” I though to myself. I had searched for years to uncover a diagnosis, some form of tangible explanation to reveal the nature of Taylor’s otherwise idiosyncratic, if not odd behaviors. Now she was putting a label to these behaviors. “Our team’s diagnosis is unanimous.” she said. I held my breath.

She leaned slightly forward in her seat “Taylor is autistic.”

She paused for a moment and continued gently, calculatedly, seemingly empathetic and concerned. “The good news is that now you’ll have some answers to your questions. The bad news is that autism doesn’t go away. Taylor will be autistic for the rest of his life.”

“The rest of his life?” I though to myself incredulously. I sat there, stunned, motionless. “Do you know anything about autism?” she asked.

“Autism? Yes, I think I’ve heard of it. Wasn’t Dustin Hoffman’s character in Rain Man autistic?”
“Well, yes he was, but that’s the interesting part, Taylor is not as severely afflicted as that character was, or for that matter as severe as many others.” She went on to explain the general nature and characteristics of autism. I continued to sit there, frozen, momentarily rendered speechless.

And in that moment, ‘What is normal?’ would become a major question in our lives, and together we found our answers.

Taylor has changed my life forever. All these years later, I am a better mother, and woman, for his grace in my life. Today, Taylor is 23, lives in independent living, and has traveled the world with me to promote the 3 films we’ve made together. Today he stands on stages, and speaks a philosophy we would all do well to understand. His “normal,” is mankinds aspiration: to become become better human beings by being who we are at any given moment.

READ RAINBOWS AND MONSTERS AT CITY PULSE

http://npaper-wehaa.com/citypulse/2010/03/10/s1/#?article=790481

A LESSON IN LETTING GO…

THIS IS A LETTER I RECEIVED FROM MY FRIEND, CHRISTINA GUZMAN. HER SON, NICK GUZMAN IS A TALENTED SINGER WHO HAPPENS TO HAVE ASD. NICK APPEARS IN MY FILM “ARTS” PERFORMING “SINCE WE’RE FRIENDS” A SONG WRITTEN FOR HIM BY JOEY TRAVOLTA AND COMPOSER JEFF LASS.

Keri, after our conversation yesterday about independence, I felt the need to cut some of my strings with Nick. SO this morning when he got dressed to run and since I was sick…Nick went on his own.He called happily on his way back saying things went well.

It took a little longer than I would have expected but I just let it go. Finally he comes in the front door smiling and proud. He is standing there holding two booklets and I said what are those? He say’s “Oh just some stuff the neighbors gave me to read”. I look at them and see that they are Jehovah Witness pamphlets.

I broke into a huge belly laugh, which Nick did not get. I was so worried about him being bit by a dog, a confrontation by a bully, being hit by a car or something of that nature. It felt really good to set him free..I think I will be doing more of this. Thank you Keri for that inspiration. I needed to confront those issues I had.Big warm heartfelt hugs,

Christinna/Mama Bear