Jennifer O’Toole

Meet Jennifer O’Toole, author of the Asperkids book series, speaker and the winner of the 2012 Temple Grandin Award.  Jennifer was diagnosed as an “Aspie” in adulthood and is the mother of three amazing Asperkids.  As a father of an Aspergirl, I especially appreciate her feminist perspective. She passionately advocates for women and girls on the spectrum because girls with autism have historically been under recognized and misidentified.  With a style all her own,  Jennifer wowed the participants of the 2014 US Autism and Asperger Association Conference with her 10 minute talk titled, “My Ruby Slippers” which will be available for purchase on the US Autism and Asperger Association site next week.  We made this portrait at the conference.  It is very different from her lovely promotional pictures, but I believe it reveals an authentic intensity that will resonate with those who know her.

Posted in Advocacy, Autism

For the Love of Art: An Open Letter to My Aspie Children

USAAA_Chris_10minThis week I’m at the 2014 US Autism and Asperger Association World Conference in Kansas City, MO. In preparation for this event,  I was asked to organize 10 minute inspirational keynote talks to set the tone for the conference.  Today it was an honor to share the stage with four incredible people; Raun Kauffman, Dr. Stephen Shore, Jennifer O’Toole and Benjamin Tarasewicz.  

This is the transcript from my 10 minute talk.

I’ve been writing this letter in my head for quite some time now.  It started out as a series of important things I’ve wanted to say to my Marauding Space Monkeys (my children, Madeline and Caleb) but in the process of preparing these thoughts for this talk I realized that it’s also a list of things I wish I would have heard as a child as I navigated a world that didn’t quite get me. 

“Dear Madeline and Caleb (My Marauding Space Monkeys),

One day, in my second grade art class we were given cardboard pieces, glue and aluminum foil. The teacher asked us to create a low relief abstract design.  I recall my classmates cutting out a variety of geometric forms and assembling them with some, but little variation from the sample.  I wanted to do something different.  So I thought back to the conceptual works of art that I had been exposed to, some of them exhibited in Kansas City at the Nelson Atkins Museum. I designed a simple form, with the raised text, “it is.” When I handed it in, the teacher scolded me for “not following the directions.” Failure.  Now I look back, from my perspective as a university art professor and I recognize the teacher’s intolerance of difference blinded her to seeing the potential in me.

This will be hard to hold on to, but it’s truth.  You define you.  Only you can define who you are, and what you will become.  Others you trust are only advisors, and the rest, don’t give them any more energy than necessary.  You deserve to take up space in this universe and the universe is improved when you contribute the results of your existence within it. You are Star Stuff incarnate. Don’t allow someone to disrespect or shame you because of your desire to focus on the things that matter to you, or pathologize your special interests as perseverance behavior that needs to be extinguished. Use your fascinations as internal motivation to build skills and expertise necessary to lead a fulfilling and productive life, however that is defined in your mind.

Sometimes it will seem the odds are stacked against you. But having challenges can give you a sense of humility, an awareness of needed personal growth and your response to these challenges might provide important clues to understanding how others may be feeling in similar situations.  But don’t mistake humility for humiliation, the internal or external voices that berate, or bully you to feel small and worthless. Some of us are riddled with fear, anxiety and adrenal stress, I know I am, but don’t let the fear stop you from living your life to the fullest. Courage is not the absence of fear, but the willingness to act in spite of it. Continuing to pursue your goals, being tenacious in your efforts will lead you to surpass everyone’s expectations, sometimes even your own. Remember, half of success is just showing up.

Adolescence was rough. Pressure to conform was excruciating, but during that time life-changing things happened to me.   I met my best friend and chosen brother Joe, and I found my passion for photography.  Joe and I bonded through our shared interest in photography and together we persisted through a turbulent youth, emerging with a skill base that shaped our futures. Later in High School, I met your Mother — a force of nature herself, and the person who has helped me become who I am today. Please understand that you don’t need a whole pile of fair weather friends, sometimes you just need one or two, the kind you trust with your life. Random acts of kindness to strangers are laudable, but forgiveness of a grievous error in friendship is so precious that its value cannot be determined.

Find love, true love.  But don’t be fooled into thinking there is only one person in this world who is your soul mate, that can make you feel desperate when there is really no need. Be wary of people who want you to change the way you look, or to be more like them. There are many such people out there and you really need to let Mom help you figure out who is who — she is brilliant at this sort of thing.

Life can throw some real hard balls. When you experience cosmic disappointment or devastating grief, don’t give into bitterness and rage. Indulging rage, even for a second, damages relationships and darkens the vulnerable tenderness within you.  Rage is a tough genie to put back into the bottle.

Question everything but pick your battles carefully. Not every battle needs to be fought, and not every battle fought needs to be won. Sometimes, losing the battle to win the war, fighting a hopeless battle in support of the underdog, or choosing peace over victory is the right strategy.

So you understand, I started the Facing Autism project because I wanted to use my talents to advocate for others.  I wanted to ignite the power of imagery to humanize the autism prevalence statistics and to convey my deep concern about the impact of environmental toxicity on human health and development.  I feel like I have contributed to the larger conversation about autism in the US and in the process, I have found a diverse group of amazing people with whom I belong. Not a small thing for a person like me.  But my choices have come at a cost as they often do when following a passion that not everyone values. I regret nothing.

Your future uncertainties must be met head on with innovation, a willingness to adapt, and fierce determination. Even in adversity, work hard to see possibility in others.  Black and white thinking misses so many opportunities for collaboration. BREATHE. Be present in the moment. Quieting your mind and soul will make space for intentional decision making, critical thinking and abundant creativity.

Create. FOR THE LOVE OF ART, do whatever it is that makes you, YOU. Do it, and don’t let anyone stop you.”

Love you better than broccoli, and to Planet X and back!

  Dad (and Mom)

Posted in Uncategorized

CJ Jilek

The other day I had the pleasure of making a portrait at Hardware Ranch in the Blacksmith Fork Canyon with the amazing ceramic artist, CJ Jilek. She’s recently back in the US after a year long stint in Perth, Australia where she did an artist residency at The Clay House.  She is starting a new position as the Assistant to the Director of the Ceramic Studio in the American Museum of Ceramic Arts in Pomona, CA.

We are lucky to have several pieces of her work in our personal collection. The images below are documentation photographs I made of her work four years ago.   Thank you CJ for the great afternoon in such a sublime location.

 

Posted in Art, Uncategorized

Summer Solstice Memorial for Nancy Holt at the Sun Tunnels

Yesterday we ushered in the summer of 2014 with a long awaited trip to Nancy Holt’s Sun Tunnels.  We had been aware of Holt’s passing in February and heard through social media that there was to be a public informal memorial gathering hosted by her colleagues and friends to celebrate her life and accomplishments. With the anticipation of experiencing the sun set on the equinox, and a hope of meeting interesting people doing the same, we packed a lovely summer supper and hit the road.  We were not disappointed.

The Sun Tunnels, as described by the Center for Land Use Interpretation, “is an artwork by Nancy Holt, completed in 1976, consisting of four large concrete tubes, laid out in the desert in an open X configuration. The nine foot diameter, 18 foot-long tunnels are pierced by holes of varying size that correspond with the pattern of selected celestial constellations. There is a tunnel for Draco, Perseus, Columba and Capricorn. The tunnels line up with the rising and falling sun of the summer and winter solstices.”

We arrived in the late afternoon, allowing ourselves time to playfully inspect the tunnels. The wind blew dust in clouds across the open expanse, and through the tunnels.  It was a visceral full body experience that included intense sensory stimulation from the bright sun, high wind, and fine dust.  Even so, our children, Madeline and Caleb were mesmerized by the elliptical light projections, circle openings and the limited color palate of the work and the land. Initially, our voices seemed too loud, too interruptive to the mediative mood of the space but gradually, as the group increased in size, the growing hum of activity was sprinkled with laughter and levity.

When the sun was approaching the event horizon, Matthew Coolidge, Founder and Director of The Center for Land Use Interpretation; Hikmet Loe, Art Historian; Lucy Lippard, curator, critic, and activist and Bruria Finkel, artist and curator spoke briefly about their friendship with Nancy and her immense contribution to land art.  The deeply moving reflections gave personal, historical and social context to the evening, and reminded us of the importance of belonging to a thriving and supportive art community.

 

Posted in Art, Travel

Governor Herbert’s Ceremonial Signing of HB88 and SB57

This week we attended the Ceremonial Signing of HB88 and SB57. The event was emotional and extremely fulfilling. After years of effort, insurance coverage for assessment, and treatment of autism will be provided for children up to 10 years of age in the state of Utah. The coverage includes ABA, DIR/Floortime, (A HUGE GAIN FOR FAMILY CHOICE) Speech, OT, PT, and other medically necessary interventions. It is a major victory, albeit an incomplete one. In the coming years, the community will continue to fight for an expansion of SB57, to include older children and to require self-insured businesses and Universities (USU, U of U, BYU, UVU, etc) to provide coverage.

Posted in Advocacy, Autism

SB57 is on Governor Herbert’s Desk. Change is good.

sb57profile2The State of Utah’s heart grew three sizes today.  SB57 has survived each hurdle of the legislative process and now sits on the desk of Utah’s Governor.  A child who is diagnosed today will have to wait until 2016 for the mandate to take effect, but never the less, that child will have access to life changing therapies paid for by insurance.  Thank you to the Utah Autism Coalition and it’s leadership over the past 6 years and for anyone and everyone who created a “tiny ripple of hope” throughout this process for individuals affected by autism and their families.  Thank you to legislators in the Utah Senate and House, who listened thoughtfully  and allowed a greater understanding of the issue to impact decision making.  YOU DID THE RIGHT THING HERE.  A GOOD THING.

 “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.”

– Robert F. Kennedy

 

Posted in Advocacy, Autism, DIRFloortime

For Such a Time as This

HB57_2013

We have remained somewhat silent in the fight for SB57, the bill introduced by Senator Brian E. Shiozawa to require insurance coverage for assessment, intervention, and treatment of autism spectrum disorders. Indeed, as have many others, we have become increasingly disenchanted with the national organization that seems to be loudest voice in the room, drowning out diverse ideas; wielding it’s power to drive specific treatments/ research objectives, and encouraging people to walk around in circles (literally) raising money from folks in the trenches to pay for a lot of expensive and highly compensated bureaucracy.

The drumbeat of advocacy for BCBA autism treatment coverage in Utah has been pounding away for nearly 5 years and in that time, autism advocates have earned some ground, (Utah Medicaid Waiver for ABA)  but not enough to even touch the growing need for interventions and support services in a state where the autism prevalence rate is 1:47 children, 1:24 boys.  Further, ABA is not right for every child. Families need to be given choices about which treatment modalities will be implemented, as the intervention will be powerfully shaping the child’s formation of relationships, learning style and character.  Our children, Madeline and Caleb made profound progress in relating and communicating through participation in The Play Project, a program being utilized by Baby Watch Early Intervention at Utah State University, Center for Persons with Disabilities.  “Developed by Dr. Solomon, P.L.A.Y. is a practical, family-friendly application of renowned child psychiatrist Dr. Stanley Greenspan’s Developmental, Individual-differences, Relationship-based (DIR) framework, popularly known as Floortime. Through structured monthly home visits focused on modeling, coaching and video feedback, consultants train parents to engage their child with autism in ways that promote emotional connection and communication. By training parents to participate in their child’s intervention, the program also promises to be cost-effective. The P.L.A.Y. Project costs under $4,000 per year, in comparison with other interventions that cost $40,000 to $60,000 per year.”  

It changed the outcome of our children’s future – anecdotal to be sure, but no less real for them and for us.  Read the results of the Play Project Pilot study here and further research support for play-based therapy here.

It has come to our attention that a recent amendment has been passed to open the treatment modalities to be covered by insurance as long as as that person has the appropriate credentials for service provision.   The HERO amendment looks like this:

45          (ii) provided or supervised by a

             46          (A) board certified behavior analyst; or

             47          (B) licensed psychologist so long as the services performed are commensurate with the
48      psychologist’s formal university training and supervised experience.  
 }

  person licensed under Title 58, Division of Occupational and Professional Licensing, whose scope of practice includes mental health services.       

 

We believe DIRFloortime and other developmental interventions should be financially accessible to all families in Utah. We applaud those responsible for this MONUMENTAL change and are ready to ask everyone we know to support SB57… for such a time as this.

 

Posted in Advocacy, Autism, DIRFloortime

Premier of Respecting Autism Radio Show

 

How cool that we got to do this!  Here’s the link to the inaugural Respecting Autism Radio Show on The Coffee Klatch, Blog Talk Radio.  A very special thank you to Dr. Gil Tippy and Marianne Russo.  Click the logo to hear the broadcast.

Posted in Advocacy, Art, Autism, DIRFloortime, Media Interviews

The Respecting Autism Radio Show

We get to be the first guests on The Respecting Autism Radio Show with Dr. Gil Tippy.  Gil Tippy, PsyD, is the Clinical Director of the Rebecca School in Manhattan. As one of the founders of the school, he has been responsible for evaluating over 300 children, and has been central in creating both the academic and clinical programs. He creates the training for the entire staff, and consults on their interventions with the children in the school. He was directly supervised by Dr. Stanley Greenspan, creator of the Developmental, Individual difference, Relationship-based (DIR®) model and is one of our personal heroes.  His super power is bringing people into authentic relationships, and seeing the best in each individual he encounters.  If you have not read his book, Respecting Autism, please pick it up and at least read the introduction. Dr. Tippy lays out the argument for a developmental/relationship based approach to autism intervention and treatment.  The implications are profound. We are recording tomorrow night and it will air this Sunday, December 8th, at 9:00 pm  Eastern Time, on the Coffee Klatch Special Needs Radio Network.  Just in the nick of time, Dr. Tippy’s Facing Autism portrait is done!

 

Posted in Advocacy, Art, Autism, DIRFloortime, Media Interviews

Foxboro Neighborhood, North Salt Lake, Another Generation of “Downwinders”

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In September we attended a rally organized by various local environmental groups protesting the Stericycle Medical Incinerary Plant’s irresponsible discharge of toxic fumes.  You can read about that and see the event photos here.  Last weekend we went back to the Foxboro neighborhood to photograph several families who own homes in the affected area. We hope to partner with the local organizations to bring additional attention to the concerns of this community.

 

Posted in Advocacy, Art, Ecology