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.

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.

 

Summer is Here…Managing These Lazy, Crazy Days!

When I was a kid and the last school assembly was over, the jubilant school bell sounded and my friends and I dashed from the building as if our pants were on fire! Years later when my children entered school and I prepared the final brown bag lunches for that last time I sang as I spread peanut butter on sandwich bread, “No more pencils, no more books, no more teachers’ dirty looks,” hoping to evoke smiles (but actually it was more like, “Mom you are so embarrassing!”). In my personal history, the end of the school year was always heralded with excitement, fun and a sense of freedom from the routines that endlessly fill the days and nights of school age children.

As a parent of school age children, there were other thoughts too like, “how am I going to keep everyone busy, happy and endure the continuous chant of ‘there’s nothing to do around here?'” Ah, summer and parenthood!

For those of you living with Autism and parents of children and adults on the spectrum, summer has its own set of challenges that include the above mentioned ,and then some. Structure is like a big, fluffy beach towel to most people on the spectrum in the summer and this is in sharp contrast to the lazy, hazy days many of us envision. In my experience, it is often up to parents and for some adults, their support team, to devise a structured day for the person living with Autism. It is my experience that although this may sound onerous and yet another “job” to do, it is truly worthwhile and will lead to a much more pleasant summer for everyone.

Here are are some tips to think about as you remove the cover from the barbecue, plant garden flowers or wring your hands together in utter fear and frustration as summer begins:
1) Talk to the person living with Autism and find out what they would like to do this summer…if they are not too verbal than observe what they seem to enjoy and like. All summer plans should be person-centered and derive from the interests of the individual involved;

2) Make a list of all favored activities;

3) Make a list of household chores and responsibilities the individual can do independently and add these to your list;

4) Make a list of household/life skills that the individual can add to their repertoire (not too many items) that family members and support helpers can help him or her master and add these to the list;

5) Ask the individual if they would like to take a trip this summer and perhaps the entire family can join in or if this is not doable then maybe suggest a few ideas for day trips and add these to the list;

6) Think of a few weekly community based outings that a family member or support helper can go with the individual to do such as grocery shopping, errand running like bank and post office and add these to the list;

7) Plan unstructured time…like time for the person to listen to music in their room or work of the computer or whatever they enjoy and add that to the list;

8) Plan outdoor time that could be learning to swim, taking walks or hiking…whatever the person likes or if they are willing to be exposed to something new, that is even better;

9) Plan for one night a week to be something special (a reward for all) like going out for frozen yogurt or a barbecue and add that to the list;

10) Invite school or work friends over on the weekend or from time to time so the individual can socialize with their friends and add this to the list….

As you see the list can include a whole array of items and it should! Then print out a calendar or use one you have and each day create the plan. It would be great to have Mondays have certain activities that happen every Monday etc. so as to have a predictable and manageable for the person structure, but do the best you can as this is not always possible.

If you are an adult on the spectrum, I think it is great if you can do this for yourself…it will really get you going rather than waiting for random things to happen. It will also help you to organize your summer and to have plans to look forward to with friends and family.

Summer is filled for most of us with some lazy, some crazy, some boring and some forever memorable days and with some thought and a little planning, this summer can be your best one ever! I hope it is!

Parents of Adults on Spectrum: They Need Support Too!

The world of adult Autism does not only involve individuals who are personally affected by the challenges of Autism.  Autism affects family members throughout their lifespans as well, and in particular parents who have a child on the spectrum; and that means “adult” children too.  A decade ago, The Daniel Jordan Fiddle Foundation was the first organization in the United States to focus exclusively on adults living with Autism and we paved the way for programs, public policy and initiatives that benefit adults on the spectrum. Today, other organizations are now beginning to look at the lifespan of Autism, and the public at large is beginning to realize that Autism is not just a childhood condition.

As the DJF Foundation has always been looking at and directing our efforts to best serving adults who live with the challenges of Autism, we also always have been focused on the health and wellness of the family members who care for and support adult individuals. (See the Health and Wellness section on our website at http://www.djfiddlefoundation.org/health.cfm )

The diversity of the spectrum is reflected in the amount of time, support and care required of the family members of adults on the spectrum.  Some adults can live independently with occasional support of family members, but most adult individuals on the spectrum require significant help from their parents and caregivers as they navigate life in the community.  Many, because of a paucity of residential programs coupled with long-waiting lists for the limited accommodations and financial constraints, live at home with their parents.

So what happens to the parents of adults on the spectrum?  Who thinks about their needs?  Who is supporting them?  Parents of adult children generally have the luxury of retirement, vacationing, down-sizing, starting new lives, transitioning their lives…but parents of adult children on the spectrum, generally cannot do these things. There is really no end in sight in the day-to-day management of the life of an adult child on the spectrum.

We, as a society, need to make ourselves aware that parenting an adult child who lives with Autism is not easy.  We need to listen to parents of adult children on the spectrum and find out what their needs are and how we can support them.  The Daniel Jordan Fiddle Foundation will be leading this discussion in the days and years ahead.

In the meantime, you can help too.  If you know a parent of a young adult or adult on the spectrum, perhaps you can offer some help to them.  If you are a member of a faith community, perhaps your congregation could be supportive by providing meals, rides or whatever your caring community is capable of offering.  In our grassroots communities, we should offer opportunities for parents of adult children to socialize, perhaps at local community centers or YMCAs or JCCs.  Truly, there are many avenues to offer support, and they do not have to be fancy or big efforts—every kindness will make a parent of an adult feel less alone and more valued!