Sometimes It Takes A While

Have you noticed the truth of the well-known expression, ” Rome wasn’t built in a day?” As many of you know, it has been some time since I added an installment to Autism for a Lifetime: Finding Joy in the Journey, and I can explain that: I, and our beloved Daniel Jordan Fiddle Foundation have reached a pinnacle we could never have imagined nearly eighteen years ago, and quite frankly I have had to sit with that (in a very deep and good way) for the past several months. For some of you who are new to our mission and why we started The Daniel Jordan Fiddle Foundation, and for those who have been with us since the beginning, I hope you will not mind a brief synopsis.

The Daniel Jordan Fiddle Foundation is named in honor and memory of my son who was diagnosed with Autism Spectrum Disorder (ASD) at age 2, and who passed away unexpectedly at age 9 due to SUDEP ( Sudden Unexpected Death in Epilepsy), a rare comorbidity of ASD. For several years before my son’s passing, I started to vigorously research what options existed for him to live, work and participate in community life as an adult, and to my dismay there were few, if any avenues to travel.  This was over twenty-five years ago.

Fast-forward to the formation of The Daniel Jordan Fiddle Foundation, when with the counsel and support of a magnificent Board of Trustees (mostly all of whom remain board members today since day one), we decided to focus our mission on adult autism because no other organization in the United States was addressing the needs of children as they aged to adulthood, and throughout their adult lives.  Many have stated that our mission was avant-garde and trailblazing, and indeed that has been the case.  Yet in my view, nothing about this observation is self-congratulatory, in fact quite the opposite.

The Daniel Jordan Fiddle Foundation Board of Trustees focused on what we all felt were unmet and unaddressed needs, and we had the passion and abilities with our combined skills to make the dream Fred Fiddle, (co-founder and Danny’s dad) and I had for our son  a reality for others.  We started in the grassroots with local organizations from our home-base in New Jersey, and gradually expanded across the United States to establish programs from coast to coast, encouraging, challenging and creating through collaborative vision and expertise, a wide array of opportunities for adults diagnosed with ASD.  Opportunities to participate in recreational activities from camping and horseback riding to dog training and bowling and much more. Opportunities to create art, graphic novels, perform in original theater productions, record music in professional studios, and much more. Opportunities to turn passions into employment from farming to computer and technology jobs, to woodworking and furniture design to baking and culinary products, and much more. Opportunities to live independently in apartments and supervised housing in rural, suburban and urban communities, and much more.

We always have stayed true to our vision, that it is a matter of human rights for all adults diagnosed with ASD to have opportunities that help them reach their greatest potential with respect and dignity. This vision transcends to my own work as an advocate and public speaker as I have made my way from Washington DC to the United Nations, and addressed audiences who are not familiar with the challenges and triumphs of ASD.  This vision has also led to meaningful collaborations with other organizations such as the Autism Society of America where we have established an annual honor called, The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award that is presented at their national conference to an individual, business, service provider, family member and others whose life and work inspires us all.

In 2014, we embarked on what we feel is the apex of our work as a groundbreaking national organization.  Grateful that after nearly two decades, several other organizations are now making wonderful efforts to address the needs of adults diagnosed with ASD, we knew it was time to look to the future, and blaze another trail. Again, our dedicated Board of Trustees met the challenge with the establishment of The Daniel Jordan Fiddle Foundation Adult Autism Endowed Funds at America’s great universities.  We decided that each fund would have a particular focus based upon the areas of adult autism that the Foundation has pioneered.  To learn more about our endowed funds at Yale University, the University of Miami, Brown University, Rutgers University and Arizona State University, and how each assures an in perpetuity focus on a specific area of adult autism for generations to come, visit http://www.djfiddlefoundation.org  For us, these endowed funds have an extra special meaning in that they will be a continuing legacy for our organization’s namesake.

So, now you may understand why it has been time to step back and take a breath! In one of the first speeches I ever gave, I quoted Saint Teresa who said, “Every drop of rain matters to the ocean,” because I believe that every contribution we make to help another person matters. I know The Daniel Jordan Fiddle Foundation has made meaningful and lasting contributions to the autism community and for that I am truly grateful to have the chance to serve. The incredible individuals and families and professionals I have had the honor to know on this journey are my heroes.  There is so much talent, so much innovation, and so much to be thankful for, and I am blessed to see how the seeds we have planted together have grown and will continue to flourish.

None of this, or anything worth doing in life happens overnight.  Often we move so diligently through our days that we overlook the small victories that over time add up to much more than we could ever imagine. While it is great to achieve big goals and be recognized for them, I have learned that what is so much more meaningful to me are the individuals who inspire these goals. We need to take the time to listen to adults diagnosed with autism, and their families, and not control the conversation.  Sometimes we need to slow down and sit with people, and just listen.  Sometimes we need to be quiet on our own, and step back.  Sometimes it takes a while, and then we know what is next.

With my love to each of you who took the time to read this, Linda

 

 

 

 

 

 

 

 

 

 

 

 

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  1. Sometimes It Takes A While | Autism For A Lifetime

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