NEW YEAR, NEW GOALS…NEW COLLABORATIONS!

 DJF Ignition Grant Program Photo

Today as we all settle into the New Year 2013, we are busy, motivated, perhaps even overwhelmed at all that we need to do and want to accomplish in the days and months ahead! As you rev-up to achieve your personal goals this year, I suggest that you consider how collaboration can help you in all areas of your life to attain the fulfillment and progress you are hoping for in 2013. In my role as Executive Director of The Daniel Jordan Fiddle Foundation, that I have now had for over a decade, collaboration has been the key to our organization’s effectiveness and progress.

In that spirit, I from time to time to feature in this BLOG the writings and thoughts of individuals on the spectrum and others who are making a difference and whom I feel will inspire you in your own journey. Recently, I received the following blog post from an adult individual named Daniel who lives with Autism…

The Gift of Asperger’s  by Daniel Wendler

For many people, a diagnosis of Asperger’s feels crippling.

And I’m not going to lie – having Asperger’s does bring many challenges. It’s not easy to manually learn all of the nuances of social interaction, especially when the rest of the world expects you to know all those things automatically. But having Asperger’s also brings many strengths. And I believe those strengths hold the key to overcome the challenges of Asperger’s. When I was diagnosed with Asperger’s 10 years ago, I was lonely, shy, and awkward.Today, I am confident, comfortable in social situations, and blessed with many deep friendships. I even run a website – www.ImproveYourSocialSkills.com – to help others achieve social success.

How was I able to achieve this? It was because of my Asperger’s, not despite it! When I received my diagnosis, I was presented with a list of social skills that people with Asperger’s often lack. This list sparked an epiphany in me. I realized that my social struggles were not because of something fundamentally wrong with me. I was struggling socially because I lacked social skills (makes sense, right?) Although some people are more naturally gifted socially than others, everyone can improve, and everyone can achieve social success. Improvement looks different for different people, and “social success” will mean something different for you than it will for me. But it’s possible to learn, and to improve. I wasn’t doomed to a life of awkwardness (and neither is anyone else).

When I realized this, I set to work. I devoured books on relationships, etiquette, conversation, body language — anything I could get my hands on. I started to debrief social interactions with my parents and figure out what I could have done better. I made a deliberate effort to go out of my comfort zone to meet new people and make new friends.My hard work paid off. I learned to survive socially, and then to thrive. I learned to make friends, and then how to be a good friendSocial interaction will always be a second language to me. But I am now fluent in that language. My Asperger’s has not been “cured,” but I have learned to thrive. The funny thing is, I never could have overcome the challenges of Asperger’s without the strengths of Asperger’s!  I used my Aspie analytical mind to puzzle through the nuances of social interaction. I used my Aspie determination (some might say stubbornness) to keep studying and practicing even when I was discouraged. I used my Aspie quirkiness and humor to defuse conflict and to find my own voice in social situations.

In every situation, I found that I was using my Aspie strength to overcome the challenges of Asperger’s. Looking back, I realize that for every challenge Asperger’s has given me, it has given me a greater strength with which to overcome that challenge. And for every strength Asperger’s has given me, I have found an opportunity to use that strength to help others.I treasure the moments when my calm rationality allows me to be a solid rock to a friend in crisis, or when my Aspie humor draws a deep belly laugh from a loved one. I take deep joy in my ability to guide others on the path to social success, and great pride when my Aspie insight allows me to see a solution others might have missed. Looking back, I realize that for every challenge Asperger’s has given me, it has given me a greater strength with which to overcome that challenge. And for every strength Asperger’s has given me, I have found an opportunity to use that strength to help others.I treasure the moments when my calm rationality allows me to be a solid rock to a friend in crisis, or when my Aspie humor draws a deep belly laugh from a loved one. I take deep joy in my ability to guide others on the path to social success, and great pride when my Aspie insight allows me to see a solution others might have missed. My Asperger’s has given me the ability to make an incredible and unique impact on the world, and I truly believe that my Asperger’s is a gift. It’s a hard gift, to be sure. But I believe that Asperger’s invites me into a rich life – a life marked by pain and struggle, yes, but also by strength, by joy, by purpose. For those of you with Asperger’s or a similar diagnosis – this rich life belongs to you too. Your road ahead will have challenges, but it will have joy as well.You are the way you are for a reason – you are not broken or wrong, just different. And that difference will equip you to make an incredible impact that only you can make.Your Asperger’s is a gift to you, and you are a gift to the world. Cherish that gift, and don’t give up.

ABOUT THE BLOGGER: Daniel Wendler is the author of www.ImproveYourSocialSkills.com, a comprehensive online guide to social skills. He was diagnosed with Asperger’s as a teenager, and has dedicated himself to overcoming the challenges of Asperger’s and helping others achieve social success. He likes people a lot, so if you are a person, he would love to get to know you! Get in touch by visiting www.ImproveYourSocialSkills.com or www.DanielWendler.com

I hope that Daniel’s story inspires you, as it is inspires me, to find Joy in the Journey! 

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by lindawf1 on January 10, 2013  •  Permalink
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Posted by lindawf1 on January 10, 2013

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The Power of Advocacy

At this time of year with election day approaching it seems that everyone is advocating for something. Politicians are advocating their positions on key issues that affect their constituents.  Special interest groups are advocating for the politicians that represent their viewpoints. Business leaders are advocating for candidates that will enhance their prosperity while the underserved are advocating for more attention to their needs.  Opinions run rampant on social media like FACEBOOK and sometimes these opinions run those with opposing viewpoints out of town.

Everywhere one turns, whether tuning into television ( and not only the news show but entertainment shows too espouse political viewpoints) or getting one’s manicure or barbershop crew-cut, people everywhere are advocating their perspectives.  Yes, this is the American way, our first amendment right to free speech, and yes, we Americans hold this near and dear to our hearts and rightfully so!  It is powerful to advocate.

Why is advocacy so powerful?  First, on a primal level, advocacy allows us a vehicle by which to use our brains, formulate an opinion and then passionately share it.  I am not sure the amount of calories burned but perhaps someone has or will do a study as to whether constant advocacy leads to weight loss!  Anyhow, back on topic, it would seem that advocacy is a healthy form of discourse.  However, not always.

A childhood friend of mine was actually threatened and bullied by some other people from our childhood because of his political views that he shared on FACEBOOK.  They even threatened his mother!  This is a sad example of how advocacy can turn ugly and cruel.  There have also been recent instances that I have noticed advocacy envy where advocates who supposedly are working together for a cause, diminish and knit-pick the work that others are doing rather than celebrating the good intentions that create awareness.

In the world of Autism advocacy, many people living with Autism have difficulty with verbal communication (although they find other ways to get their point across for their needs and wants) so they are dependent on their peers who are more verbal, their parents and caregivers and professionals working in the field to express viewpoints.  The Daniel Jordan Fiddle Foundation is extremely proud to have been among the first national Autism organizations and to be the first one focused on adults, to have an Advocates Advisory Board. We have always relied on our Advocates to guide us in our program development and in all else that we do. The Advocates on our Advisory Board all live with the challenges of Autism and some have posted on this blog and others will in the future.  These advocates currently serving as The Daniel Jordan Fiddle Foundation adult self-advocate advisors are: Alex Bond, Stephen Daly, Amy Gravino, Susan Meyer, Jimmy Scancarella and T. Paul Voss. Each of these individuals has had opportunities to represent The Daniel Jordan Fiddle Foundation; for example at: advocacy events; in the media; in pieces they have written for our publications; and social media; and at conferences and round-table think tanks to name a few.

In addition, The Daniel Jordan Fiddle Foundation has proudly partnered with Autism organizations led by self advocates such as GRASP, ASAN and ARI and the programs, initiatives and awareness our partnerships have created are ones we take great pride in, especially because these affiliations and valued collaborations are driven by those who are on the front lines of Autism advocacy.  We are also very proud of the fact that these collaborations are serving the needs of the constituents that these organizations represent.

The power of advocacy is potent.  Even one voice can make a difference as we have often seen through history.  But the power of advocacy, like any other kind of power, must be cherished; and it should be used with careful consideration, respect, tolerance and positivity. Self-advocates should not be engaged as poster mannequins but as valued voices who drive the cause they represent. Groups working to achieve societal change and better lives should not vie against one another to be top-dog but rather support and respectfully disagree while mutually encouraging community engagement on the issues they care about. In these best case scenarios the power of advocacy is at its finest.Image

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by lindawf1 on October 22, 2012  •  Permalink
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Posted by lindawf1 on October 22, 2012

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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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by lindawf1 on October 3, 2012  •  Permalink
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Posted by lindawf1 on October 3, 2012

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Don’t Have A Meltdown Over Ice Cream

We have all heard the expression and maybe even read the book, “Don’t Sweat the Small Stuff,” yet sometimes we do or we have an encounter that reminds us.

It was a beautiful, but humid (which in this part of the country is usual) summer evening and we were standing on line for an ice cream cone.  The line was long: actually there were two adjacent long lines, filled with children, teenagers, families, infants in strollers, couples of all ages and pairs of friends, also of all ages. One such pair of friends was standing in line in front of us; they looked to each be around eighty years old, but this is just speculation.  As we waited and my friend and I chattered away the time, during the pauses in our conversation, I could not help but overhear some of the conversation of the women in front of us being that we were standing so close behind them.  One of the women was making remarks about people in line, and it was really obvious because she would look around, scowl and quip to her friend things like, “Look at her in those shorts—who does she think she is?” or she would pass a disapproving glance through the crowd.  Mind you, we were on line for ice cream at an ice cream shack, not a fancy restaurant!  In response to her remarks, her companion would shake her head in agreement or just listen dutifully.

Finally, after about forty-five minutes it was almost our turn to reach the front of the line and place our orders at the counter of the ice cream shack.  Being closer to the front of the line, we could now read the numerous assortment of flavors including one of the evening’s special flavors: “carmel pretzel swirl.” Moments later, it was time for the woman in front of us to order.  The college girl politely asked her, “What can I get you this evening?”  The woman answered, “A cup of carmel pretzel swirl.”  The college girl then politely answered,  ”I am sorry but we are out of that flavor, can I get you something else instead?”—there are about thirty other flavors!  And with that, the woman, in the meanest, rudest tone possible, snapped back at the college girl, ” FORGET IT!!!!”, as if it was the college girl’s fault that they were out of the flavor she wanted, and really, as if she had just been given a death sentence!  The two women (including the dutiful one) stomped off of the line, neither one getting an ice cream or even considering getting another flavor.

I was not only in shock by her reaction, but very offended by it and very sympathetic towards the innocent college girl who was just politely doing her job at the busy ice cream counter!  How could that woman act so rudely, and about something that was supposed to be fun and delicious—ICE CREAM?  What was the big deal if they ran out of the flavor she wanted—she had waited almost an hour on line and there were at least thirty other flavors to choose from?  Why could she not just choose another flavor?  Why did she have to treat the college girl with such disdain? Why did she make such a big deal over this and how come she could not recover from her disappointment over something so inconsequential?  All of these questions flooded my mind.

I did not have time to think of any answers to those questions because now it was our turn to order our ice cream treats! I settled on a vanilla/banana soft- serve with hot fudge!  My companion had wanted the mocha chip but they were out of that one too so he settled on a cone filled with a flavor called “Moose Tracks!” Thankfully my companion got it right and did not have a meltdown over ice cream!

As we walked home, enjoying our frozen treats and the simple pleasure of the evening, I looked back at the long line of waiting patrons and could not help but think that they too would soon be cooling down with their icy treats and how that unhappy woman and her dutiful companion were somewhere in the night sweating over the small stuff.

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by lindawf1 on August 5, 2012  •  Permalink
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Posted by lindawf1 on August 5, 2012

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What and Who Defines a Person’s Quality of Life?

According to Scott Michael Robertson, an adult living with Autism and pioneer in the neurodiversity movement, a deficit-focused model has dominated most discussions and research relating to quality of life and people living with Autism. Over the years, researchers, scholars, and professionals have widely disagreed on how to define quality of life with regard to people living with disabilities. The World Health Organization’s position paper on quality of life from 1995 (WHOQOL, 1995) defines it as: “Individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.” Carr, Gibson, & Robinson (2001) describe quality of life as concerned with how “impairment limits a person’s ability to fulfill a normal role.” Countless other descriptions of the concept of quality of life abound in academic and professional discourse according to Robertson. As Robertson has shared, below is a synopsis of key areas that current researchers and thinkers in the field of adult Autism may consider in a discussion relating to quality of life:
Core Domains of Quality of Life Indicators:

Self-Determination: Autonomy, Choices, Decisions, Personal Control, Self-Direction, Personal Goals/Values

Social Inclusion: Acceptance, Status, Supports, Work Environment, Roles, Volunteer Activities, Residential Environment

Material Well-Being: Ownership, Financial, Security, Food, Employment, Possessions, Socio-economic Status, Shelter

Personal Development: Education, Skills, Fulfillment, Personal Competence, Purposeful Activity, Advancement

Emotional Well-Being: Spirituality, Happiness, Safety, Freedom from Stress, Self-concept, Contentment

Interpersonal Relations: Intimacy, Affection, Family, Interactions, Friendships, Support

Rights: Privacy, Voting, Access, Due Process, Ownership, Civic Responsibilities

Physical Well-Being: Health, Nutrition, Recreation, Mobility, Health Care, Health Insurance, Leisure, Activities of Daily Living

Professionals working in the field of Autism who focus on this issue generally agree with Robertson on the core domains that encompass quality of life. Dr. Robert L. Schalock’s (2000) comprehensive review of papers on quality of life from the last 30 years, on which Robertson relies, identified the eight core domains listed above and their underlying indicators.

Like the neurodiversity model, Schalock (2000) outlines quality of life domains in a manner that fuses a social model of disability with an individual commitment to self-determination and self-advocacy. The framework also rejects a deficit model of disabilities in favor of a perspective that embraces strengths and difficulties, as well as human diversity writes Robertson in his article entitled, “Neurodiversity, Quality of Life, And Autistic Adults: Shifting Research and Professional Focuses Onto Real-Life Challenges.”

Central to any discussion about quality of life is the person; and every other perspective is a distant secondary opinion. There are individuals on the spectrum who can spend every waking hour listening to music and they are perfectly happy and fulfilled. There are individuals on the spectrum who never utter a single word yet they communicate brilliantly through their artwork. There are individuals on the spectrum who derive immense satisfaction from scanning books at a library or stocking shelves at the local supermarket and they perform these jobs with great efficiency and take immense pride in their accomplishments. Aren’t these, and countless other examples, indicators of an excellent quality of life?

Our perspective as onlookers should not be to “put our heads on the shoulders of others” but rather, we should be supportive and provide non-judgmental endorsement of individuals on the spectrum rights to enjoy their lives as they deem fulfilling (albeit in safe, healthy and legal pursuits!).  Our efforts would be better spent opening doors that provide opportunities for people on the spectrum to live, work and recreate in the community so that they can discover personally fulfilling avenues. This is a core goal of The Daniel Jordan Fiddle Foundation in our development, support and advocacy efforts that include programs, public service information and resources, and public policy reflective of the goals, needs and ideas of the diverse population of adults living with Autism.

As you move forward in your own life, consider the core domains of quality of life presented above. The vitality of your own experiences and choices propels your quality of life. So too, for people living with Autism, the right to make individual choices and pursue a life of self-determined meaning is vital.

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by lindawf1 on July 22, 2012  •  Permalink
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Posted by lindawf1 on July 22, 2012

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The Birthday of Independence

Today is July 4th, the birthday of the United States of America and our independence as a free and democratic nation.  The words BIRTHDAY and INDEPENDENCE in this instance go hand in hand.  In the lives of adults living with Autism and other challenges, perhaps one could say that attaining one’s independence to live, work and participate in community life is indeed a kind of birthday—or rebirth of the person.  To achieve independence it is essential that the person grows and develops in ways that give him or her the skills, mind-set and opportunities to have the confidence to say, ” I can do it, and I am ready to try.”  In turn, it takes the surrounding community to say, ” We believe in you, and we are here to back you up and support you as you take these new and exciting steps towards independence.”

Just like the the pioneers who forged forward to start our great country, striving towards independence takes courage.  It takes a leap of faith to go on a path not yet traveled without any certainty of what the future will be or even if one has the ability or strength to face what is ahead. Yet, if our forefathers and foremothers did not take this chance, and did not pursue a calculated risk that the future would be better and more prosperous for them, the birth of our nation would never have happened.  No one could have predicted then the impact of their actions, but today, we can truly celebrate the awesomeness of their courage and what was achieved.

Achieving independence is not about going it alone.  Achieving independence is when all of us realize that it is every person’s inalienable right to live a life that enhances personal freedom while embracing our connections to one another.  People living with Autism and other challenges are entitled to the same rights as every other citizen of our country and this includes the right to be independent. As a society we must allow all of our citizens the chance to grow, prosper and flourish to achieve their optimal independence.  We must all take this risk, just like the founders of our nation did, so that all can attain their personal dream of a better life.

On this 2012 birthday of our nation’s independence, as you watch the fireworks, light up the barbecue grill or spend time relaxing—think about what independence means to you and how important it is that you have it.  Now, if you will, think of a person you know who may be seeking more independence or may be capable of it but is afraid, and perhaps you can offer your hand to that person to hold as they move forward into their future of independence.

G-d Bless America Now and FOREVER!!!

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by lindawf1 on July 4, 2012  •  Permalink
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Posted by lindawf1 on July 4, 2012

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When Trust is Broken…Then What?

As the saying goes,”trust takes a long time to build, but only a minute to destroy.” How often do we go into relationships, trusting those we are involved with, only to be disappointed by a disregard for that relationship and sometimes worse, betrayal?! We build trust in our teachers, our business partners, our community and political leaders and in our personal relationships, but sadly this trust is sometimes misplaced. The pain inflicted in these instances depends on the circumstances, however, in all cases, it is a wound, and it hurts.

How you deal with the betrayal of trust first requires the understanding that this breach has nothing to do with your character or with you—it is about the person or entity that has broken the promise you counted on. It is their carelessness, character flaw or conceit not yours! Recognizing that the perpetrator is responsible is important when coping with broken trust.

We rely on so many others for support, love and guidance and when that trust is broken it is difficult imagining that we can ever trust again. It feels as if every time trust is betrayed it chips a piece of one’s trusting heart away.

However, we cannot stop trusting—we just need to take the lessons learned and hopefully make better choices in the future. One might contend that sometimes trust is broken unwittingly, and in this case, it may be easier to forgive. But trust that is betrayed intentionally, without regard to the potential consequences whether on society or the individual, is much more difficult to wrestle with and overcome.

So who can we trust? This is such a difficult question and one that cannot be answered with pure certainty. Trust is a leap of faith, and as humans we need to trust to survive. And, we do survive when trust is lost, because we must. Trust is and will always be a fragile vessel; so carry it with the greatest care knowing that if it shatters, it will never be the same again.

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by lindawf1 on June 11, 2012  •  Permalink
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Posted by lindawf1 on June 11, 2012

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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!

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by lindawf1 on May 23, 2012  •  Permalink
Posted in Parenting, Positive Thinking
Tagged , , , , ,

Posted by lindawf1 on May 23, 2012

http://djfiddlefoundation.wordpress.com/2012/05/23/summer-is-here-managing-these-lazy-crazy-days/

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!  

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by lindawf1 on May 6, 2012  •  Permalink
Posted in Parenting, Positive Thinking

Posted by lindawf1 on May 6, 2012

http://djfiddlefoundation.wordpress.com/2012/05/06/parents-of-adults-on-spectrum-they-need-support-too/

A Snapshot and a Statistic is an Unrevealing Picture

The latest buzz in the Autism circles goes something like this: parent posts a picture on FACEBOOK of their adorable, handsome child with a caption that reads,”this is my 1 in 94″ or ” this is what 1 in 88 looks like!”  What can one who reads this post gather from it other than to gaze at a good-looking child and wonder what is Autistic about this image, and for that matter what does that number mean?  Obviously, the parent loves their child, and the parent is proud of their child (or why would they post his photo in the first place?) but what does that photo tell us about Autism and further, what does the statistic tell us about Autism?  In my mind very little.

The photographs in these POSTS reveal nothing about the caption. There are very good looking people who live with Autism and many not so distinguished people who live with Autism, just like in the population at large.  I wonder if the parent is trying to illustrate a point about Autism by posting the picture because as far as I know, Autistic people look no different than any other people.  Members of the Autism community know this but there are many people who do not know that Autism is not reflected in how one looks, so it may be confusing to try to figure out what is Autistic about the person by looking at the photo.  Clearly, the parent is not posting the photo to confuse the FACEBOOK audience into thinking that Autism has such physical markers that can be discerned in a photo, but I think it is confusing when coupled with the caption.

Which leads me to the caption, “this is my 1 in 94″ or “this is what 1 in 88 looks like.”   I ask myself, “1 in 94 or 88 or any number what?” when I read such a statement. The number tells the average FACEBOOK viewer nothing about the person in the picture.  Even if one assumes (and presumably the parent means this) that this is what the statistic looks like, I find it insulting to the person in the photo, though I may have no right to be insulted for them.  First, all people are unique individuals not a number.  Second, people living with Autism are individuals like everyone else, not numbers. Third, the number is not the sum of the person as some may read into this POST.

I truly believe that the parents who POST such a photo and caption do so proudly with good intentions but I wish they would have stopped to think a bit more before pushing the POST button.  It does no one living with Autism any good to be cornered into a statistical box.  People living with Autism are as diverse as the general population.  It does not enhance the life of a person living with Autism to have people stare at them to try to find a physical difference or to have others focus on their “differences.”

In my view, although numbers can be useful in helping the scientists or the politicians focus on an issue, when it comes to real, live, breathing individuals, we need to get away from numbers and look at the person.  We need to focus on the strengths, talents and uniqueness of each individual because it is all of these together that make the person.  That proud parent on FACEBOOK could have written a different caption to make the point they were trying to make: ” this is my son who lives with Autism and I love him.”  Everyone who read that POST would have understood its meaning immediately and its positive caption would have achieved the empathy and support they were aiming for.

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by lindawf1 on April 8, 2012  •  Permalink
Posted in Positive Thinking
Tagged , ,

Posted by lindawf1 on April 8, 2012

http://djfiddlefoundation.wordpress.com/2012/04/08/a-snapshot-and-a-statistic-is-an-unrevealing-picture-2/

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