Sometimes It Takes A While

via Sometimes It Takes A While

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

 

 

 

 

 

 

 

 

 

 

 

 

EVERYTHING HAS ITS DAY

Why is it that everything has its day? There are of course the long celebrated traditional days like Mother’s Day and Father’s Day.  For the romantics among us, there is Valentine’s Day, and for the winter weary there is Groundhogs Day.  There are numerous annual celebratory days that most people like because it means a long holiday weekend, and a day off from work; Presidents’ Day, Columbus Day and Memorial Day are some of these.

Now, almost every cause, be it one relating to illness, racism, sexism or multiple other “isms” has a day too.  In fact, I bet that we could take the calendar for 2018 and find some sort of celebration for every day of the year.  This is in addition to the birthdays, anniversaries and graduations we celebrate individually.  Frankly, I could use a personal secretary to keep up with it all, and some folks do have this, its called a “social secretary.” Most of us however rely on our calendars on our phones or desktops to keep up with this stuff but sometimes keeping tabs is overwhelming.

For those among us who feel the need to see their cause’s signature colors shining on lights on the Empire State Building or other Federal and State structures, these awareness and celebratory days perhaps give them the recognition and validation they seek.  But, forgive me, if I just do not support this kind of self-serving and annoying trend.

It is my observation that “causes” use this kind of awareness day to raise money or congratulate themselves for accomplishments. These kinds of days are also so competitive pitting like-minded causes to compete for attention and notoriety. And of course the dutiful media falls right into the trap, running stories about the “cause du jour” and enhancing the whole business of political correctness. Yes, it is a business folks!

May I thus be so bold as to suggest that we do away with most of these “DAYS” (alright we can keep Mother’s and Father’s Day) and instead focus on what is REALLY important: doing good for the world and doing so every single day!  As my wise grandfather taught me, “self praise is no recommendation.”  We do not need all the fanfare of celebratory and awareness days, what we need is to make each day matter for what we care about.

 

DONATE NOW to the ONLY ALL-VOLUNTEER national autism organization serving adults and their families: THE DANIEL JORDAN FIDDLE FOUNDATION! Look at our record for 2017…

Before the door closes on 2017, and in preparation for the new tax laws in 2018, it is the perfect time to consider a donation of any amount to the only 501(c)(3), all volunteer-run autism organization in the United States focused exclusively on adult autism and the only organization with FOUR GROUNDBREAKING ENDOWMENT FUNDS at renowned universities: The Daniel Jordan Fiddle Foundation!

According to Merrill Lynch investment advisors:

“Charitable gifts could be worth more if deducted in 2017 instead of 2018. The top marginal tax rate for 2018 would be 37% (down from 39.6%)—some taxpayers who are in the current 39.6% bracket will drop to 35% since that bracket is elongated to cover income up to $600,000 for married taxpayers. Therefore, a charitable deduction could be worth more if made in 2017 rather than 2018. There is a host of complexities, such as phaseouts and caps that can affect any particular taxpayer’s decision. There is no substitute for individualized advice from your tax professional. It is also noted that with the elimination of state and local tax deductions (and even with a $10,000 allowable deduction), some taxpayers may actually use the standard deduction if they have no charitable deductions. As a result, some portion of their charitable deductions in 2018 could be “wasted.”

This past year has been a great year of accomplishment for The Daniel Jordan Fiddle Foundation Adult Autism Research Fund at Yale University led by Dr. Roger Jou who has engaged nearly 400 participants in social groups that will form the basis of innovative research relating the unique social challenges of autistic adults.

The Daniel Jordan Fiddle Foundation Transition and Adult Programs at the University of Miami Center for Autism and Related and Disabilities and the like-named fund that supports employment bootcamps, job coaching and support groups for adults and even social activities that enhance skills vital to employment has launched full-time employment for participants and fosters on-going support to assure success!

The Daniel Jordan Fiddle Foundation Theater and Performing Arts Fund at Brown University has trained over 50 professionals in the acclaimed Miracle Project methodology and successfully completed a filled to capacity summer camp alongside Artists and Scientists as Partners where young adults and adults on the autism spectrum, their peers and Brown students through the magic of theater, dance and music made life-changing memories together!  And this is only year one!!

At the Graduate School of social work at Rutgers, the State University of New Jersey, we recently met with Dean Potter and the four Daniel Jordan Fiddle Foundation Fellows who are working as clinicians with the family members of adults diagnosed with autism as well as putting the finishing touches on a national database to assist the family members of adults as well as professionals, autistic adults, and the community at large in navigating resources and support systems they need during the lifespan journey of of autism.

Finally, The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award, a national honor presented annually at the Autism Society of America Conference, was awarded to Rising Tide Car Wash, a Florida company that employs autistic adults. Rising Tide is a role model for entrepreneurs and businesses across the United States and throughout the world and its great success exemplifies The Daniel Jordan Fiddle Foundation vision to value each person and honor their strengths and talents as they participate in and contribute to community life.

As you see, 2017 was an incredible year of achievement for our all-volunteer-run organization, and we could not have done it without your continuous support during these past 15 years.  We hope you will consider a year-end donation that you can make directly from our homepage at http://www.djfiddlefoundation.org

With our unwavering commitment to all those affected by Autism, and to all of you in our service, our best wishes for a wonderful new year, The Board of Trustees of The Daniel Jordan Fiddle Foundation

 

Jumping Off…

By Linda J. Walder

This is the jumping off point for today, written by filmmaker and writer Simon Fitzmaurice, “Society is predicated on the idea that we all have the same wants and needs. But that’s only when you reduce us to the same. What’s different about us is just as important.”

The other night, at a friend’s home for dinner, the question arose about autism. What is it?  What are the “characteristics of a person ‘with’ autism?” My response, and quoting my friend and colleague Dr. Stephen Shore, “When you know one person with autism, you know one person with autism.”

The discussion then moved to neurodiversity, and my point that we are all different, and unique, and in my opinion, that is what makes the world fascinating and stimulating. “But isn’t it so sad,” said the hostess. “that many autistic people will not be able to live their lives experiencing and doing so many things we can?”Another guest answered, “but maybe they do not want to do those things you speak of and maybe it never even crossed their mind to do them.”

This has been what some view as the BIG problem with the “cure autism” mentality that others embrace.  Those who espouse the view of autism as a “disease” that needs “curing” versus those who do not believe autism is an illness but rather, a manifestation of what has been called  “different brains.” The response of many “cure” folks has been, “how cruel and unthoughtful are those who do not live with the sleepless nights and a nonverbal, frustrated and behaviorally challenged child to believe autism should NOT be cured?” “Have those who do not believe in ‘curing autism’ walked in my shoes?”, they proclaim.”

I have been thinking about both sides of this discussion for many years, first as a parent, and later as an advocate and not-for-profit leader in the autism community. The one consistent observation I have made is that this debate itself is really the crux of neurodiversity. If all opinions are based upon how a given individual processes their world of experiences, so too the notion of “curing” autism is based upon one’s experiences of autism.

Getting back to where I jumped off in the beginning, it seems to me that the duel between the individual and the society has and will always exist.  Our laws, our organizations, our secular and religious institutions are all based upon preconceived ideas of right and wrong and how “things” should be and should not be done. There is an order in this that creates a sense of security that humans crave. But the truth is we all do not have the same wants and needs, and our compassionate souls might better take the lead, traveling in less secure places, and opening our minds to what seems difficult but is essentially very easy: acceptance. We do not want our children, or anyone else’s children, relatives, friends, or more to suffer, but should we define what is suffering for them?  And do we even know for sure that they are suffering?

 

 

 

Armchair Critics Feast Upon Gossip Rather Than Standing Up For Change

At times in each of our lives, we are faced with the question, “to do or wait for someone else to do?” I would also add to that question this way, “to do or wait for someone else to do, but in the mean time whine and complain, write snarky comments in social media and spread gossip?” This question has been crossing my mind frequently lately because of worldwide events, autism-related issues, local occurrences at large, and the way I observe people reacting to them. Some of the brouhaha centers on real events that get distorted like in the old child’s game of telephone where gossip is passed on and on embellished along the way from one person to the next until the truth is disconnected. Other news is completely fake or made-up and meant to stir- up certain specified people or groups; also reminiscent of childhood behavior, where one child makes up a lie and spreads it maliciously while the intended recipient(s) gobble it up.

Whether gossip or fake news, there are those who spread it and devour it, often behind a computer screen or in texts. This indirect method works great for the armchair critic who can feast upon the “tasty” morsels that they read or learn about from their “sources.” These folks are more brazen when shielded behind a communication device. For instance, I have seen this kind of behavior on Facebook when someone in the autism community digs into another person with fury rather than facts. The worst of this is when the insults become personal; another example of childish behavior that we as adults supposedly have learned is not acceptable.

Armchair critics can be effective in raising points or questioning things but their methods do little or nothing to change what they are complaining about. Instead they vividly opine but leave the heavy lifting of change-making for others. To do the heavy lifting of change-making it takes more than just ideas: it takes courage; persistence; and time. It also takes selflessness, and by that I mean doing something that may not directly benefit you. There are people who do this and inspire us, everyday heroes and heroines who change the world.  It is easy to criticize  and as the saying goes “words are cheap,” but to add real value to a cause, even the tiniest action can make a big impact.

Personally, I am honored to know and work with many outstanding advocates in the autism community. These individuals do not get tangled in the web of gossip because they are focusing on projects and advocacy that they are passionate; they are changing lives and opening doors for others. They realize that criticism alone does little to change society. They realize that tearing others down does not build a community up. They realize that there are many ways to look at the same issue, and they show respect for others even when they disagree with them.

It is my hope that as adults we start to do a better a job in raising our children to be  concerned about the world they are inheriting rather than just becoming successful  themselves. We must teach by example that armchair or bystander activism is not enough. You have not done a notable job as a parent if you merely raise a child that looks good in Facebook posts and seems to have it all. The word “seems” is important here. That same child may be a gossip using tactics like armchair bullying or spreading rumors. That same child may act entitled, in the “little things” like not sending appreciative thank you notes to having common courtesy for all people, not only those who can benefit them. Indeed there are many younger individuals who actively change the world because they care about more than building up their resumes, but too many do so to enhance their own appearance. It is up to parents and other adults in the lives of our children to model kind and respectful discourse and to demonstrate through our behavior that actions based upon knowledge not gossip speak louder than words.

The opinions expressed in this BLOG are solely the opinions of Linda J. Walder and do not reflect the opinions of The Daniel Jordan Fiddle Foundation or those affiliated with it.

Dust in the Wind

The following is a commentary by Linda J. Walder, and does not necessarily reflect the viewpoints of others affiliated with The Daniel Jordan Fiddle Foundation.

Many of you are too young to remember the rock group Kansas and their iconic song “Dust in the Wind,” https://www.youtube.com/watch?v=tH2w6Oxx0kQ This song comes to mind in the wake of celebrities, and others in the public eye who due to their careers are in the media spotlight, and who are constantly badgering the public with their personal viewpoints and politics. The egos of these folks are so enormous that they have anointed themselves the “experts” on everything! Many of these people are not well-read, well-versed or well-eduated, but this does not stop them from using their platforms to divide our country.The lyrics of ” Dust in the Wind” are spot on for the message that all of us are simply “dust in the wind,” and that no amount of money, fame or power will change that truth.

How can we progress towards a more utopian world where we all feel valued, and where we all feel that our viewpoints, although differing, will not be berated or stifled? In the world of autism advocacy, we need to first and foremost listen to individuals and their families living with Autism Spectrum Disorder (ASD). Science may guide us and we should learn from what is revealed, but not to the exclusion of the day to day experiences of individuals and their families. Both research and experience are worthy informants and hopefully help to improve people’s lives. However, what is valid today, may not be valid tomorrow. We cannot learn more if we shut our minds to new research and experiences that contravene how we think now.

Those whose egos claim ownership of the truth may be in for a wake up call when their positions are rejected. The realization that we are all “dust in the wind” should be an uplifting thought of empowerment for every person who defies that sort of egotism.  In the end, what will matter is not who blew their horn the loudest, but what blew us away without fanfare or conceit.

 

 

 

Inaugurating A New Beginning

Thoughts on What We Must Do to Educate and Inform the Trump Administration about Autism Spectrum Disorder by Linda J. Walder, Founder and Executive Director of The Daniel Jordan Fiddle Foundation for Adult Autism

Today, January 20, 2017 was an historic new beginning for all Americans, and the world, as Donald J. Trump became the 45th President of the United States of America.What does this mean for individuals and families living with Autism Spectrum Disorder (ASD)? It is too early to know with certainty what will happen in the next four years, but based upon what we know so far, I offer these predictions and thoughts that hopefully inspire discussion and action:

  1. Donald Trump appears to be a devoted father and has very close relationships with all of his children. It would seem that he would also value the families of all Americans, and that he would recognize and address the challenges that many face, including those of individuals and families living with ASD;
  2. Donald Trump does not appear to know a great deal about ASD but that does not mean he does not want to learn about it, and how it affects individuals and families. It is our job as members of the community directly involved with ASD, as advocates, family members, scientists and professionals to educate the President and his administration about the needs and concerns of those affected by ASD;
  3. Donald Trump’s choice to lead the Department of Education seems to not embrace or understand how vital federal laws like IDEA are to our students challenged by ASD and that this is a law that enables families assurances that no matter where they live in the United States that their child will receive the best education possible commensurate with their needs.  By leaving this to the states to decide, it puts families in the position of having to move and uproot their lives to states that are more accepting of the IDEA,  and this is onerous on families.  Again, we must educate the Trump administration about protecting these rights in all states;
  4. Although Donald Trump has pledged to repeal and replace Obama Care this does not mean that treatments and medical needs of autistic individuals will be unavailable or that insurance rights will be repealed.  It has and is already up to each state to accept the federal right to receive  insurance coverage on behavioral therapies and other medical needs and that should not change in the Trump administration and families should still be able to save for medical expenses in Health Savings Accounts;
  5. The impact or lack of impact of vaccines on autism has been brought up by candidate Trump and other advocacy groups lately and will most likely be a renewed topic of inquiry and discussion in  the new administration.  Although the CDC’s current position is that there is no connection between vaccinations and autism, I do not see any harm in revisiting the inquiries on this topic while at the same time recommending to parents to pursue a safe vaccination schedule  with their child’s doctors;
  6. The lifelong needs of individuals diagnosed with ASD affect directly over a million Americans, and our entire society at large.  We need the United States government to continue to support the development of housing, employment, medical care, educational and recreational options for the diversely challenged population diagnosed with ASD and President Trump must be made aware of the hopes, challenges and needs of these individuals and families.

We should not look at today’s inauguration of a new President as a negative that will revoke the gains we have made or foreclose future ones.  Rather, we should further solidify our resolve that all people diagnosed with ASD are entitled to be valued and supported as needed throughout their lives.  We do this as an autism community and community at large through advocacy, educating our new leaders, and by highlighting and publicizing positive examples that put a spotlight on how we successfully address the challenges we face to achieve the best lives possible for all. Now is not the time for despondency, rather we must roll up our sleeves and get to work with steadfast hope that our effective enlightenment of the Trump administration will lead to better days ahead.

 

 

 

Now is the Time. Let YOUR Light Shine!

It is remarkable that in this year marked 2016, within the next 48 hours, 3 of the world’s renowned holidays will begin: Christmas, Hanukkah and Kwanzaa. It is the season of joy, hope and celebration for many, a melancholy time for some, and disdained by a few. Regardless, it is possible to focus on something more inherent than whatever this time of year evokes for you. Now is the Time. Let YOUR Light Shine!

What does this mean? As always, it means what you want it to mean for you. It can mean a smile you give to a stranger you pass on the street. It can mean enjoying beautiful music. It can mean noticing the sunrise or sunset. What inspires your inner light to shine is deeply personal, and powerful. Light is endless when it shines from within and no one can diminish that light unless you permit that. Even then, even if your light ebbs and dwindles, it will not be extinguished in your lifetime.

Think about that. Your light will not be extinguished during your lifetime. That is an astounding thought!

How much your light shines depends, and it depends on you. It does not depend on the opinions, behavior, judgments, assessments or attitude of others. Your light may flicker by the actions of those whose lights are dimmer and want yours to be too, but do not let them have the strength of the wind to blow upon yours because you are the storm. When others display their negativity or boasting in false light that does not enhance their light and diminish yours, it diminishes theirs.

Value your light and do not be afraid to let it shine uniquely. This is your time to shine and that is why you are alive now. It does not matter if you become famous or well-known because that has nothing to do with light, except light that is manufactured.

This is the season to notice the light everywhere and most importantly your own light. May your light shine more brightly than ever in the new year marked 2017.

The Silent Ones

Who are the silent ones? They are definitely NOT many of your friends on FACEBOOK. They are definitely not the self -proclaimed cognoscenti crew of celebrities and sports stars. They are definitely not political pundits who are paid to give their opinions.

The silent ones are outwardly “politically correct,” but inwardly they are “politically fed-up” with the arrogance, the lies, the misrepresentations and the endless opinions of those who go beyond just stating theirs, but pummel us with them.

The need to be right does not appear to be a need of the silent ones. The silent ones do not need to boast every time something happens that seems to validate their point of view. Most likely they take mental notes but are not keeping score.

The silent ones are not one type of person, not one gender, not one race, not one religion, not from one country or from one political party. They do not like one kind of ice cream, one sort of hairstyle or favor one type of town. The silent ones live among us everywhere.

Do not mistake the silence of the silent ones for acquiescence. Do not mistake the silence of the silent ones for apathy. Do not mistake the silence of the silent ones for approval.

The silent ones will let you know what they want, what they need and what they know. The time will come.“And the sign said, ‘the words of the prophets are…whispered in the sounds of silence.’”