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.

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.

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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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

Do Holidays Get You Down?

We are smack in the middle of the holiday season 2013.  Thanksgiving and hopefully its leftovers are finished.  The wax has been peeled off of menorahs throughout the world, and in some community squares and shop windows fully lighted ones still adorn.  Christmas trees have been decorated with lovely ornaments, and one of the most spectacular ones in Rockefeller Center, New York City is ablaze with colorful lights that delight thousands of shoppers and tourists.  In a few weeks, more thousands of people will decorate themselves for New Year’s eve in Times Square, and everyone, everywhere will bid 2013 goodbye to welcome in a fresh new year.

It is nothing new to remark that all of this fanfare, and the obligatory shopping, overeating, overindulging etc. can get old and can make even the most merry among us want to curl up in bed and never leave our cozy nest. Even if you do not feel this way, you probably know someone who does.

People living with Autism are no different than anyone else during the holidays. For some it is the happiest time of the year and for others it is a completely dreaded misery.  It is important to understand, no matter how one individually feels about the holidays, others may not share your view, and as a caring person, one should try to empathize.  It probably does more good to be supportive rather than to try to drag another person over to your point of view.  So, if Susie hates the holidays and you love them, don’t try to convince her to be a gleeful girl, let her be a subdued Susie—in another words, be supportive. (Consider that supportiveness to be a very wonderful holiday gift to her!)  Of course invite her and include her in your holiday plans too, but be understanding if she says no.  This works the other way too of course, so if Paul is Mr. Holidays, don’t tear down his tinsel.

One way to cope with holiday doldrums is to understand your own personal expectations. An idea is to write down what you hope the holidays will be like for you: who you will share New Year’e eve with; what family members will discuss that may bother you; what you will eat and drink, for instance.  This may help you manage expectations by preparing you in advance for what may come up and what you may or may not wish to do.

Regardless of your perspective about the holidays, it is something we all have to go through as members of our society, like it or not. The days of December will draw to a close and the page of your holiday chapter 2013 will need to end as you herald in a brand new year of possibilities, promises and pleasures.

Wishing you all you dream for and more in 2014—Your friends at The Daniel Jordan Fiddle FoundationImage

A Post From Amy Gravino, Member of The Daniel Jordan Fiddle Foundation Self Advocate Advisory Board

 

The inspiring story of Amy’s vacation to Italy this summer will surely leave you longing to take your own adventure.  Although, just like everyone else, people living with Autism, may or may not enjoy traveling, we encourage those who do to explore places of interest and expand their horizons…Enjoy!

Barefoot in Italy: The Travels of a Food-Loving Aspie
by Amy Gravino

I can hear the bells.

Can’t ya hear ‘em chime?

I did.

For three weeks I heard the bells, in the town of San Marco Argentano in Calabria, Italy, where I visited family this past summer. It takes some getting used to—the sound of loud church bells ringing on the hour, every hour, accompanied by quieter tones on the quarter and half hours.  It’s an almost nightmarish proposition especially for a person on the autism spectrum, at least until the bells become a part of your daily routine.

This trip to Italy was my fourth thus far, but it was a “first” in many ways. When I was growing up, during the summer breaks from school, my parents and I would go on vacation all over the country, from the East Coast to the West. But it never really was a “vacation” for me, because I was constantly overwhelmed by the noises, the lack of routine, strange beds to sleep in, and sights unfamiliar. This made traveling an entirely unpleasant experience for me—and for our family.

The day that things began to change was the day that I learned how to pack my suitcase—which previously my mother had had to do for me. When you’re a kid on vacation, you never have much in the way of control, as you have to go where your parents want to go, when they want to go. 

Learning how to pack my suitcase suddenly gave me control over some element of my travel. I did it by finding a system that worked for me, a system of clearly labeled plastic storage bags for different items, and as a result, the stress of packing disappeared completely.

So when I finished my Masters degree and my mom and I made plans to travel to Italy, I could not have been more excited.

From the third floor of my mother’s cousin’s townhouse, we surveyed the goings-on in the street below. The church across from their building was one of at least five in San Marco, and was the source of the loudest bells that we heard each day. Jagged cobblestones lined the way into the main piazza, which bustled with teenagers, old men congregating in front of the Bar Centrale, and shopkeepers standing on the sidewalks waiting for customers.

There were several green grocers within walking distance of where were staying, but my favorite was the closest one, adjacent to the church. Every day, I would admire the deep red tomatoes on display, along with the rainbow of produce surrounding them: Peppers, zucchini, beans, oranges, apples, and more.  

As beautiful as the vegetables were, they tasted even better. You hear a lot in the news about “eating locally,” which means eating fruits and vegetables that are grown in your area, instead of ones from other parts of the world that are then shipped to supermarkets.

 In the United States, we have Farmers Markets that let us buy locally, but most people do their shopping at the supermarket. In Italy, it is the opposite—people buy vegetables mostly from the green grocer and do not get them at the supermarket.

I will never forget how sweet those red tomatoes were once I finally got to eat them.  Or how crisp and green the Romaine lettuce was, the leaves of which were washed and eaten completely plain at dinner, one at a time, or how juicy and ripe the nectarines were that we had for dessert.

Because I saw the difference between what I buy in the supermarket at home and what I ate in Italy, I gained an appreciation for fresh, local food that I didn’t have before. Now, it’s become important to me not just what I put in my body, but where the food I put in it comes from.

For a person with Asperger’s Syndrome, who may have many food sensitivities and preferences, it can be difficult to eat healthy. Finding out where food comes from and choosing when and where to buy it is another way to give a person on the spectrum an element of control over this facet of his or her life.

In Italy, one feast at the dinner table often gives way to a different feast later that night in the streets. San Marco was no exception, and the Feast of St. Anthony of Padua took place during the first week of our trip. My mother, her cousin, and his wife readily went out into the crowd, but I stayed behind. The prospect of so much noise and so many people in a tightly packed area proved too daunting, and I knew that if I went, I wouldn’t be able to handle it.

The booming crackle-pop! of multicolored fireworks that capped off the night validated my concerns, and then some.  I shuddered and cringed at every explosion, which somehow seemed louder than any fireworks I’d heard before.  My only source of relief was that I was not outside entrenched in the mass of feast-goers when it was happening.

Sensory issues are something that every person on the autism spectrum has to consider when preparing to travel. Planning ahead for a situation like the Feast of St. Anthony might have helped me to take a chance in venturing out, especially if I had a specific, set “exit route” that I could use to escape from the crowd if it became necessary.

It takes time to get used to many new “firsts” on a vacation—your first flight, first hotel bed, and the many new foods, sights, sounds, and people that you will encounter. Being able to travel is an invaluable skill, as well as something that gives you opportunities that you otherwise never would have had staying at home. Whether it’s the sweetness of tomatoes or the unpaved cobblestones moving under your feet, being on the autism spectrum doesn’t have to mean missing out on the fun of vacation.

Everyone deserves a chance to hear those bells chime.

 

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