Welcome To 2015 and A Vision of Hope and Love for the New Year By Guest Blogger and Autism Advocate Kerry Magro

What better way to start the New Year than to read an unedited piece from one of The Daniel Jordan Fiddle Foundation’s admired advocates,  Amazon best-selling author Kerry Magro. Kerry’s new book, “Autism and Falling in Love” tells the story of how he was non-verbal as a child to overcoming the odds to become a national speaker and finding a relationship as an adult. You can learn more about Kerry and his book here.

The Difficulties of ‘Mind Blindness’ in Individuals with Autism

by Kerry Magro

One of the better movies I’ve seen about autism in relationships was the 2009 film “Adam” featuring Hugh Dancy and Rose Byrne. In the movie, Hugh Dancy plays a 29-year-old with Aspergers Syndrome who just lost his father and has to transition to now living by himself for the first time. While in this process he also finds a romantic relationship with a new girl (Rose Byrne) who has just moved into his building.

I had a chance to watch this movie again this weekend and it brought up a lot of different emotions for me. My new book “Autism and Falling in Love” is just coming out this week and in the book I discuss a great deal of the same topics that this movie does. One in particular they emphasize on is “mind blindness.” Mind blindness as Hugh Dancy’s character portrays to his girlfriend is the inability to understand what someone else is thinking. As a 26-year-old adult with autism myself, having this movie out there to discuss this specific challenge some face is very refreshing.

In my book I discuss how mind blindness had made for several difficult scenarios for me in relationships. The inability to express empathy and to do this, to “put myself in the shoes of another,” limited my understanding of others, and made it difficult to develop anything but basic friendships/relationships. People are very complex and reading them—not only from a relationship standpoint but to advance in life, whether it’s through school, employment, on a professional level, is a necessary skill.

Further, there are different names for this theory including “Tunnel Vision.” This has led to not only people I’ve been in relationships with but some of my peers to believe that I’m self-centered, and that regardless of what I’m doing, it’s about me and everyone else has to live with it (which is it farthest from the truth because I feel passionately about other people’s feelings).

On the other hand, these experiences glaringly pointed out, that although I have raised the awareness of what autism is, and put a face on what someone with autism looks like, many people have no clue of what it entails or how it manifests or affects many in our community. I’ve never used my disability as a scapegoat for whatever tendencies I have gone through but what do you do?

This is how I felt in one of my past relationships. I didn’t understand to what extent things were going wrong. What was worse is, when I was told what had gone wrong, I didn’t get the opportunity to try and fix things. Although I start seeking help within an hour of learning what had gone wrong, I couldn’t make things right for us and that has given me one of the bigger lessons I’ve ever had to learn.

What I can share with the people reading this blog when it comes to mind blindness and also autism is simple. Follow my own advice… Autism is never a disability unless you let it become one. I take criticism as an indication of what I could work on to become stronger as a person, but in this situation where I haven’t been able to understand… I’ve just never felt so blind.

Rich Bushnell Heads Up Grants Management at The Daniel Jordan Fiddle Foundation Guided by Individuals Living with Autism

John Goldfarb and Rich Bushnell, a Founding Trustee of The Daniel Jordan Fiddle Foundation had the chance to discuss Rich’s leadership role and great insights in a recent interview:

 

Rich Bushnell (far left) at one of "Danny's Red Ball Weekends" at Camp Bernie hosted by Ridgewood YMCA

Rich Bushnell (far left) at one of “Danny’s Red Ball Weekends” at Camp Bernie hosted by Ridgewood YMCA

John: How did you become involved as a Founding Trustee of The Daniel Jordan Fiddle (DJF) Foundation?

Rich: I’ve been a longtime friend of Linda and Fred (DJF Foundation co-founders) and my children grew up with Danny (Danny Fiddle for whom DJF Foundation is named) so I knew firsthand the love and the spirit that was a part of Danny.   My kids certainly enjoyed playing with Danny and being with him.  When Linda and Fred decided to start the DJF Foundation, it was something I felt I wanted to be a part of to assure the ongoing legacy and memory of Danny.

John: What is your role on the DJF Foundation Board and why is it important to you?

Rich: My role on the Board has been to head up grants management of the over 100 programs and numerous community resources DJF Foundation has developed and funded during the past 12 years. As the organization has evolved, we have grown in the diversity of programs and resources we have created, including model DJF Signature Programs that have become blueprints for adult autism program development throughout the United States. We have always maintained our focus on transition and adult life for people living with autism and we have opened many doors of opportunity where none existed before. Another key aspect of being apart of the Board is being able to offer direction and work with Linda and the rest of the board members to create ways to address underserved needs. It has been very rewarding to work with the other board members and to be part of the team that guides and sustains the organization.

John: Would you please tell me about your job outside of DJF Foundation?

Rich: I am a retired executive at General Electric Corporation and I am head of one of the business development areas.

John: How has your connection to autism grown over the years and what have you learned from it?

Rich: Through DJF Foundation, I’ve met a number of families who have a family member on the spectrum and of course I have met many individuals who have participated in our programs and contributed their experiences and ideas to DJF’s efforts. It has been extremely rewarding to see the impact our programs and resources have had on individuals and families. It makes me continually realize how valued and needed the work of the DJF Foundation is to those we serve.

John: What can a person who does not have direct connection, like a relative, do to be a better neighbor and friend to someone on the autism spectrum?

Rich: Although my family does not have any autistic members, living next door to Danny gave us all, especially our sons, the opportunity to learn more about autism. My sons played with Danny and had many good times with him because they liked Danny and he was fun to be with, and we all cared for him because of the person he was and his lively personality. The fact that he was autistic was just part of him, but not all of him. There is no special way to act if your neighbor or friend is autistic, just accept them for who they are, like you would anyone else.

John: What do you think the future holds for people living with autism?

Rich: Well I think it’s getting better because there is more general awareness about autism. We need to continue to expand awareness that autism impacts individuals for a lifetime and that when children grow up there needs to be supports and services to help them live as independently as possible. This is why the advocacy efforts of DJF Foundation are so important and Linda with her broad expertise is making an impact. We need to always value and listen to people who live with autism. Our DJF Advisory Board is led by people on the spectrum and it is a great model for society to listen to those who are directly affected and be guided by their hopes and dreams.

Rich receives a decade award for his volunteer service to DJF Foundation

Rich receives a decade award for his volunteer service to DJF Foundation

 

Steve Ball: Founding Trustee, Dedicated Volunteer and Emeritus Trustee

John Goldfarb continues his series on “Getting to Know the Dedicated and Talented DJF Board of Trustees” with his recent conversation with Steve Ball, the strategic leader of the organization:

John: What made you decide to become a Founding Trustee of The Daniel Jordan Fiddle Foundation (DJF)?

Steve: Fred Fiddle and Linda Walder, the co-founders of DJF have been close personal friends for many years, and I knew Danny (Fiddle) since the day he was born. When he passed away, it seemed like the only thing to do to support this new and what turned out to be groundbreaking organization, named for a special boy.

John: What has been your role on the DJF Board?

Steve: Over the years I have helped the Board of Trustees to formulate a strategic vision that encompasses a balance of our finances and objectives. I see my role as advising Linda and the Board with a plan for each year to help the organization succeed in achieving the goals of our mission. I have been glad to serve the organization and hopefully make an impact.

John: Would you please tell me about your job that you do outside of DJF?

Steve: I was a banker for years for Merrill Lynch, and now I do some teaching at Rutgers University Business School, and work on a lot of different things, primarily in the real estate business and private investments.

John: What is your personal connection to autism?

Steve: Well again, my personal connection is knowing Fred and Linda and obviously knowing Danny for years, and that’s how I got to understand about autism. If it wasn’t for that, quite frankly I probably wouldn’t know a lot about it.

John: Does your own family have any members on the spectrum?

Steve: We have in fact. There is someone in my family who’s on the spectrum, a person who is able to live pretty independently, but yes we have.

John: What advice would you give anyone who has a loved one on the autism spectrum?

Steve: Well like anything, probably do a fair amount of research: try to understand your loved one and their challenges as best as you can because if you don’t become educated, I think it’s difficult for all. The DJF website is a great place to start http://www.djfiddlefoundation.org where one can find many resources and updated information.

John: What do you think the future holds for people living with autism?

Steve: I think it’s brighter than it had been over the last 10 years. It seems like the awareness factor has gone to new levels for a host of different reasons, one of which is the work and advocacy of DJF.

John: Do you have any mentors who inspired you to continue working for DJF?

Steve: The one person who’s inspired me really has been Linda. She’s amazing; everyone should be able to channel the grief that she and Fred went through; she has been able to turn tremendous grief into a positive and lasting energy in Danny’s honor and memory. We are all inspired by her.

Steve Ball and Linda J. Walder

Steve with Linda at a DJF fundraiser hosted by him and his generous and talented wife Pam at their home.

Fred Fiddle, Co-Founder of The Daniel Jordan Fiddle Foundation, is Dedicated to Fulfilling A Mission in Memory of His Son

John Goldfarb interviewed The Daniel Jordan Fiddle Foundation’s Co-Founder, Fred Fiddle who explains his role at The Daniel Jordan Fiddle Foundation.

fiddleFred Fiddle, Co-Founder of The Daniel Jordan Fiddle Foundation

John: What was your goal in co-founding The Daniel Jordan Fiddle Foundation?

Fred:   Daniel was my son, and Linda, the Founder and Executive Director and I co-founded The Daniel Jordan Fiddle Foundation in memory of him, and to carry out his legacy with the purpose of providing opportunities for the diverse adult autism community so as to raise their quality of life and give them a place in the world that would be better for them and their families.

John: Why is being a member of the Board of Trustees important to you and what is your current role?

Fred: As one of the organization’s founders, I continue to help oversee the direction of both short term and long term goals while maintaining the mission to focus on adults living with Autism. I’m the treasurer of The Daniel Jordan Fiddle Foundation, and chair the oversight of all financial aspects of the organization .

John: Would you please tell me about your job, or what you do now?

Fred: For many years, I’ve worked on Wall Street. I am a banker, and I’m an investment banker and originate what are known as capital markets transactions.

John: In what other ways have you connected to individuals and families because of your work with The Daniel Jordan Fiddle Foundation?

Fred:, I’ve developed close relationships with other families that have autistic sons, daughters, nieces, nephews, aunts, uncles, as I’m sure your well aware, this is a situation which has grown in significant proportions over the years. There’s many now that are on the spectrum and I’ve reached out to many of those in need and have been blessed to come into contact with many families that have family members on the spectrum, and it reminds me of times with my son and also reminds me that giving back is something that’s really important in life.

John: What are your hopes for the Autism community?

Fred: I would tell you that the future, I would hope continues to improve. I would hope that there would be more organizations either like ours or at least similar enough and that they’re supportive of the autism community. I would hope that government plays a larger role in sponsoring programs and services for those living with autism. Certainly there’s a lot of effort and research that’s gone into trying to establish the grounds on which autism is triggered in individuals, but the bottom line is, there’s an enormous population that are currently living with autism, most of those individuals will live a fairly long life, a typical lifespan, and everyday there are kids that are being born that will at some point be diagnosed, so the size and scope of the issue is significant, and I only hope that the support meets the challenge.

VICKI GENTEMPO OFMANI, CONTINUING THE LEGACY OF HER STUDENT, DANNY FIDDLE…

Vicki Gentempo Ofmani is a Founding member of The Daniel Jordan Fiddle Foundation (DJFF) Board of Trustees and she recently discussed with John Goldfarb, DJFF intern about her role in the development of DJFF:

John: How did you become a a Founding Trustee on the DJFF Board?

Vicki: I was Danny’s first teacher at the Forum School in New Jersey. When I was asked to join the Board by Linda Walder and Fred Fiddle (co-founder’s of DJFF), I was flattered and honored and when they told me the that the organization would be the first one in the United States to focus exclusively on young adults and adults living with Autism, I was completely committed. Joining this dynamic organization was aligned with my own interests and on a personal level, to this day, continues to give me purpose.

John: Would you please tell me about your “day” job:

Vicki: I am the Supervisor of Instruction and Structured Learning Coordinator at the Forum School in Waldwick, New Jersey. I act as Assistant Director of the school. My career has always been in Special Education, primarily working with learners living with Autism and related challenges. My job at this point is to coordinate learning experiences for students ages 16-21 and to also oversee the behavioral components of their educational programs. I also coordinate all of the teacher assistants that work in each of the Forum School classrooms (the Forum School serves children ages 3-21 years old).

John: Who are your mentors?

Vicki: I have a few…Linda Walder, Founder and President of the DJFF is one of them because she has taken a personal tragedy and turned it into a highly respected and leading organization that benefits people living with Autism everywhere. Dr. Steve Krapes, the former Director of the Forum School has been a role model and has guided and enhanced my understanding about teaching students with different challenges and I am extremely grateful to him for his 25 years of mentorship that truly shaped my career.

John: What a advice would you give parents who are raising a child living with Autism?

Vicki: I think being accepting that everyone is different is key. Acceptance will lead to understanding the needs of your child and then you will be able to help your child be the best he or she can be. It will also lead to providing the supports that will enhance your child’s life by enabling them to be part of the community.

John: What do you think the future holds for people living with Autism?

Vicki: I think it holds as much promise as it does for anyone else. For each of my students, their choices will depend on their interests, some may need more support than others but each should be able to attain goals and

Vicki Gentempo Ofmani, Founding Trustee of The Daniel Jordan Fiddle Foundation

Vicki Gentempo Ofmani,
Founding Trustee of The Daniel Jordan Fiddle Foundation

live fulfilling lives. This is the legacy of my student Danny Fiddle, and the DJFF Foundation created in his memory and honor, for all people living with Autism to reach their personal best.

John Goldfarb Interviews Jim Scancarella, Founding Board of Trustees Member of DJFF

Founding Trustee and Vice President of the Board, Jim is a dedicated volunteer and leader

Founding Trustee and Vice President of the Board, Jim is a dedicated volunteer and leader

Jim Scancarella is the Vice President of the Daniel Jordan Fiddle Foundation Board of Trustees. John Goldfarb, our blog editor had the opportunity to talk with Jim recently.  

John: How did you become a founding Board of Trustees member and Vice President of The Daniel Jordan Fiddle Foundation?

Jim: My son Jimmy and Danny were at the Forum School in New Jersey together and our families met over 18 years ago. When The Daniel Jordan Fiddle Foundation was established over a dozen years ago, Linda (Linda J. Walder , Founder of The Daniel Jordan Fiddle Foundation) asked me to serve on the Board of Trustees. I wanted to give back something to all these beautiful kids and young adults and believed in Linda’s pioneering focus on adults living with Autism. At the time, we were the only organization in the United States to have a specific mission focused on adults.

John: What do you do as Vice President of The Daniel Jordan Fiddle Foundation?

Jim: I typically lead fundraising efforts, I attend meetings, assist with going to look at various projects that we’re considering collaborations with, and whatever else is requested of me.

John: How does the Board of Trustees decide on projects The Daniel Jordan Fiddle Foundation will develop and support?

Jim: There are constantly new and ongoing projects that Linda spearheads. Then these are reviewed by our Board of Trustees. Our mission and vision of developing, advocating for and funding projects to benefit adults on the spectrum is based on the social entrepreneurial spirit of The Daniel Jordan Fiddle Foundation and founded in our goal to open as many doors as possible for all adults living with Autism. We have always remained focused on our mission and all we do reflects this.

John: What is your personal connection to Autism?

Jim: My son Jimmy, who is 22 is Autistic, he is on the autistic spectrum.

John: How has your family dealt with Autism?

Jim: We’re very fortunate that Jimmy is an easy-going kid and we’ve been able to deal with any issues that have arisen. We’ve just been able to adjust to our situation, that has been an easier situation than what other families experience.

John: What advice would you give anyone who has to cope with the challenges of a loved one who lives with Autism?

Jim: Just hang in there. There are difficult times and rewarding times and many things in between, but try to take them in stride.

John: Since you joined this Foundation, what is it like to create opportunities for adults who live with Autism?

Jim: We don’t really get to meet a lot of the individuals our endeavors benefit directly, however, it just makes us all feel good knowing that because of our efforts their lives are changed and expanded with new opportunities. It gives us great pride to know that the resources we have developed or programs relating to residential, employment or recreation have created opportunities that never existed before for adults living with Autism. I look forward to our next great initiatives that are on the drawing board now as they will create enduring collaborations that will benefit adults in the next decades.

John: What do you think the future holds for people living with Autism?

Jim: I think it’s good, I think there’s a lot of focus on the issues obviously, and that can only bring good things looking forward.

John: How has this Foundation changed lives?

Jim: The Daniel Jordan Fiddle Foundation has been in existence for over 12 years, and we were the first organization in the United States to focus on adults. I believe our efforts started what is now a national focus on the growing population of adults living on the spectrum, and I am proud to be a part of the strides that have been made to create the best lives possible for all people living with Autism. Our residential, recreational, transition and employment programs have opened so many opportunities around the country and we will continue to break new ground in the years ahead.

 

Welcome John Goldfarb, Our New Intern and Blog Editor

Summer Intern and Blog Editor, John Goldfarb

Summer Intern and Blog Editor, John Goldfarb

The Daniel Jordan Fiddle Foundation is excited to introduce you to our new intern, John Goldfarb who will be taking over as the Editor of our Blog for the summer. We asked John to introduce himself and to share his focus for the Blog in the coming weeks…

Hi everyone: I am John Goldfarb, a huge Baltimore Ravens, Los Angeles Lakers, New York Yankees, Rutgers Football, and Wisconsin Badgers basketball sports fan. I am also a recent graduate from County College of Morris in New Jersey. I will be attending Ramapo College,,, also located in New Jersey, this fall. I am a communications major. My interest in communications is sports journalism.

I’m very excited to be The Daniel Jordan Fiddle (DJF) Foundation blog editor this summer because this is an excellent opportunity to get to know more about the DJF Foundation as well as the people who help this organization out in numerous great ways.

Before I got into writing and editing articles, I played four years of football at Livingston High School. My team won a state championship my sophomore year and I had the opportunity to be on the Giants stadium field for the game. From my experience in football; I understand what it is like to be a part of something special. I get that same special feeling being a part of an organization like DJF.

Before joining the DJF Foundation, I spent my county college days working for the Youngtown Edition Newspaper. This paper is the on campus newspaper of the County College of Morris. I served as the college’s sports editor. While working for the Youngtown, I interviewed athletes, coaches and students from various teams or who were just around for sports related articles.

When interviewing the dedicated people affiliated with the all volunteer DJF Foundation, I will ask questions such as, “what convinced you to join the DJF Foundation?” or “how have you been impacted by Autism?”. If you have any ideas for questions for our Board members, self-advocates or collaborative partners of the DJF Foundation, feel free to email me at jdgold93@verizon.net.

I hope you will find my blog interesting as together we get to know the great people at the DJF Foundation a little better.

The Pros of Procrastination

Happy Holidays and I Guess Happy Tax Day!!!!

Autism For A Lifetime

Image Only a few days until April 15th, tax day, and of course I am thinking about procrastination, aren’t many of us? In fact, writing this blog is one of about twenty things I did today to avoid what I really “should” be doing, but then again, I am getting things done that I probably would not have done had I not procrastinated.  Ah, the first pro of procrastination!

I find that I procrastinate when I really do not want to do something because it is boring, requires too much thought or I would just rather be doing something else.  Today is a beautiful and warm day, the first in quite a while, so I took a long walk in the park with my dog Bella.  Another pro of procrastinating: Bella and I got some exercise and the sun shone upon us.

And then there is this very organized but very…

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The Pros of Procrastination

ImageOnly a few days until April 15th, tax day, and of course I am thinking about procrastination, aren’t many of us? In fact, writing this blog is one of about twenty things I did today to avoid what I really “should” be doing, but then again, I am getting things done that I probably would not have done had I not procrastinated.  Ah, the first pro of procrastination!

I find that I procrastinate when I really do not want to do something because it is boring, requires too much thought or I would just rather be doing something else.  Today is a beautiful and warm day, the first in quite a while, so I took a long walk in the park with my dog Bella.  Another pro of procrastinating: Bella and I got some exercise and the sun shone upon us.

And then there is this very organized but very tall stack of paperwork I need to go through for work, and I need to carefully read and review it all, but it is such a big, tall pile and although I love what I do, I cannot bring myself to do it today. However, I am thinking about the contents of the pile and as my thoughts are marinating I am getting more focused on the direction I want to take. This kind of procrastination is really part of the process of defining goals and objectives.  It is a getting ready mode that is necessary for thoughtful analysis and decision making.  Procrastination is on its face a way of avoiding a decision, or could it be a way the mind synthesizes and works through scenarios that will lead to better decision making?

For many people who live with Autism, and their families, there are often difficult and challenging things that others do not have to contend with in the same way. For instance, this week people will be celebrating Easter and Passover, and it is a time when family and friends gather together.  These gatherings are not easy for people living with Autism because of social and sensory impacts and many procrastinate on accepting invitations, not because they do not want to go but because they do not know if they can handle it. In these cases, my suggestion would be to think about why you are stressed out and procrastinating.  Maybe you will come up with a few things that you “fear” will happen if you go to the gathering, and then you can hopefully figure out a strategy to work this through, or even talk it over with the host of the gathering (after all, they invited you so they must care about you!). Procrastinating your decision about whether you will accept the invitation could actually be a good way to get yourself prepared and comfortable with your choice and will also help clarify your situation for the host.

Procrastination has a bad reputation, but is it really deserved?  When we procrastinate we allow time for new and maybe better things to happen. When we procrastinate we get more focused as we race towards the deadline.  And speaking of deadlines, I need to finish preparing my taxes and stop procrastinating!

A Valentine For You

Dear Friends, This is a Valentine created with love and appreciation for you! We at The Daniel Jordan Fiddle Foundation are so grateful for your continuous support for our 12 years of developing, advocating for and funding programs, resources and supportive services that benefit the diverse population of adults living with Autism throughout the United States. Thank you with love!!!

Why is a day like Valentine’s Day meaningful?  For many it is a particularly difficult day.  I read something this morning that reminds me of this…a beautiful woman I know posted on FACEBOOK that for 16 years she has been sending herself flowers on Valentine’s Day and looks forward to the day when someone else will do this for her.  My first thought was how poignant and a little sad, but then I thought, this is good that she loves and values herself enough to send herself flowers on this day.  It is a good message, to love yourself first.

It is also meaningful to take a pause in our busy lives to acknowledge love.  We can all get so overwhelmed with daily chores, commitments and chaos that gratefulness for all of those we love remains unspoken.  Valentine’s Day reminds us to say aloud what is in our heart.

And one final thought on this topic, if you know someone who is alone, or may feel alone today, why not pick up the phone or at least send a text or an email to say, “Happy Valentine’s Day?”  They are three little words that will mean a lot!Image

For those special someones, the other three words (“I love you”) will mean more than anything.

With love to you,

The Daniel Jordan Fiddle Foundation