Category Archives: Autism

Jeremy “The Yeti” Crocker, Hardcore Autism Parent

Jeremy is a kindred spirit. I photographed this towering man, “The Yeti” (his words) because I deeply resonate with his hardcore passion about advocating for children (and adults) with special needs.  I asked him to write a little about his life and he took the soap box and ran with it.   Jeremy, thank you for sharing your personal story here and for using your voice to empower fathers facing similar challenges.  

 

 

Guest Blogger, Jeremy Crocker

My name is Jeremy Crocker and I am a stubborn, over protective, confrontational advocate and supporter of the special needs community.  Some people might consider me to be a bit too sensitive and quick to anger when it comes to individuals with special needs being mocked or mistreated in any way but I’m 100% proud and unapologetic about the choice I’ve made.  My journey began when my younger brother was born and diagnosed with down syndrome.  I was just a young child then so I didn’t know anything about what that meant or how he would be treated in the future.  I just knew he was my brother and that our family loved each other very much.  Of course, my naive outlook on life began eroding as soon as I started elementary school and witnessed how kids treated those who were different than what they considered to be “normal”.  I was just a chubby kid who was often outnumbered, so as you can imagine I got roughed up frequently when standing up for the children in the special education classes.  It was painful and humiliating to the point that I usually tried to hide what had happened to me but I don’t regret a single second of it.  My life continued down this path with all sorts of twists and turns but we don’t need to get into all of that.

Fast forward to the year 2007, when I became a father and I discovered an entire new definition for the word “love.”  All of my priorities were instantly rearranged and the focal point of my universe became a tiny little human named Caden, who could melt me with his big blue eyes.  After a year passed, we noticed he wasn’t passing certain developmental milestones and eventually we received a diagnosis of PDD-NOS (pervasive developmental disorder – not otherwise specified) which is just a confusing way to let us know that our child had an autism spectrum disorder.  I remember this hollow feeling crept through me as my brain refused to process the information it had just received.  I became quiet and withdrawn to the point that the only person I wanted to interact with was my son, regardless of the many attempts my wife and parents made to break through to me.  Eventually, I knocked down the walls and rejoined my family in the land of the living after doing some spring cleaning in my skull.  It was at this time that my wife and I both focused on becoming well-informed advocates who could always fight for the best interest of our child no matter what obstacles were thrown in front of us.

As we took our first steps down the path to earning a black belt in autism parenting, it became quite clear that we had an advantage that others in our situation did not have.  We had an ace up our sleeve that could lay waste to anyone who would dare deprive our son of any resources and/or opportunities that might help him reach his full developmental potential.  We had a weapon so powerful that it could simultaneously teach my wife and I how to become the best possible advocates we could be and bake delicious homemade cookies at the same time!  The name of this wise teacher and defender of Caden was none other than GRANDMA!!!! (Please try to imagine some dramatically ominous music playing in the background.)  That’s right, my Mom had already racked up 25 years of awesomeness by being the best damn advocate she could possibly be for my brother.  Our training began immediately and we took everything in as quickly as we could.  After some time we started finding additional resources through local organizations, therapists, other parents, and a great new pediatrician who has been a huge part or our family’s evolution.  We still try to educate ourselves more and more as we go, but we’re careful to sort out the misinformation and glorified opinions that some people in the special needs community are trying to pass off as facts.  It can all get overwhelming at times, but when we step back and look at the progress our amazing little boy has made over the past four years things suddenly seem a little more manageable and our motivation levels tend to increase dramatically (we also go through a lot of coffee).

In closing, I want to make it clear that my crazy little family wouldn’t be where we are today without an amazing support system consisting of family, friends, teachers, therapists, doctors, fellow parents, etc.  We are beyond grateful to everyone who has helped our son along the way and look forward to meeting new additions to “Team Caden” as we continue to roll with the punches and celebrate every victory no matter how big or small.  My wife and I would also like to let everyone out there know that parents of kids with special needs are not something to fear or feel awkward around.  We may seem a little disheveled and sleep deprived at times but we enjoy having “grown up time” as much as any other parent.  Just because we have different stories and experiences than most parents doesn’t mean we can’t find some common ground to agree on.  All we’re looking for is some acceptance and inclusion for our children so they can have some of the same childhood experiences that so many kids take for granted every single day.  We are a loving bunch of folks to anyone who is decent and respectful to us and our children.  Of course, on the flip side, if anyone ever messes with a child who has special needs (especially MY child) then they’d better run like hell because we will tear them apart and then go out for ice cream when we’re done.  I dream of the day when the special needs community unites under one banner instead of splintering off into “the autism group” or “the down syndrome group”.  If we could all work together with minimal bickering and just stick to the basics of what we all want for our kids, we could accomplish more than any of us have achieved up to this point.  Maybe I’m just developing a brand new naive outlook on life, but I really like the way it looks in my imagination and it’s going to take more than some schoolyard bullies to make this one erode away.

 

 

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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.

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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.

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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

 

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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.

 

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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.

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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!

 

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A Huge Shout Out to the US Autism and Asperger Association for an AMAZING Conference This Year!

THANK YOU.  It just keeps getting better and better and because the conference was held in Utah this year, the ripple of impact really hit home!  Thank you Dr. Lawrence Kaplan, Gail Kaplan, Theresa Wrangham, et al. for making this conference everything that it was – enlightening, empathetic, and empowering. Thank you Rev. Dolores Wiens, and Dr. Paul Wiens (aka, Granny and Granddad) for painting the town red with our children Madeline and Caleb, so that we could attend together and spend time with fantastic folks like, Dr. Gil Tippy,  aka, DIR/Floortime Guru; Brooklynne Sanders; costumer and young brilliant self advocate;  Jacquelynn Bradley, super awesome Easter Seals Play Project advocate, Julie Matthews, ASD Nutritionist and foodie extraordinaire, and Dr. Judy Zimmerman, the incredible person responsible for figuring out the autism prevalence in Utah — “Auntie Judy” to the kids.  We are so grateful! Here is a sampling of the photographs made during the conference.

We just love these people!

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“US kids born in polluted areas more likely to have autism.”

Environmental Health News, a foundation-funded news organization that advances the public’s understanding of environmental health issues, reports the link between air quality and autism today. The article cites the study, “Perinatal Air Pollutant Exposures and Autism Spectrum Disorder in the Children of Nurses’ Health Study II Participants” was released today online in Environmental Health Perspectives authored by Andrea Roberts, a lead research associate at the Harvard University School of Public Health.  While the study is not conclusive, it provides the impetus for further research and has major implications for regions with air quality problems like we have in Salt Lake City and Cache Valley, Utah.

 

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Paradise Ranch, Las Vegas

I just completed the post-production work on the most recent Martyrs, Saints and Superheroes portrait, Paul Rogers III QMHA, M.S. Paul provides Horse Assisted Therapy (HAT) to individuals with autism, disabilities or other mental health issues in a climate controlled arena called Paradise Ranch in North Las Vegas. Paul and his wife Stephanie are devoted to a working ranch that contributes to the heath and well-being of humans and animals. These folks are just extraordinary people.

Paul is a true horse whisperer with the ability to reach horse and child alike and Stephanie has a grounded administrative giftedness — an amazing partnership! Their beautiful free-spirited children, Aurora and Alex, worked and played right along side ours; like they had known each other forever. Paul was gracious enough to give our children a chance to experience riding a horse around the arena.  The magical way Paul related to Maddie and Caleb in that brief lesson revealed the blend of mastery and artistry he employs in his work and made the benefits of HAT obvious.  The developing facility contains a waiting room, gift shop, play space, quiet respite room for caregivers, a sensory room and a theater stage.  There is even a shoe exchange so that all clients have appropriate shoes for riding regardless of the ability to purchase them.  The potential is limitless and with hard work and passion, Paul and Stephanie are transforming these buildings (formerly a flooring warehouse) into a safe haven for the very important and therapeutic work being done there.  While it is not my intention to declare what historical figure is being referenced in each photograph, we left Paradise Ranch with a sense that we had spent time with St. Francis of Assisi.

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