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!  

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.

Read a Guest Post From Kerry Magro, An Outstanding Advocate Living with Autism

When He Grows Up

This blog post is by Kerry Magro. Kerry, an adult living with Autism, and an advocate for the Autism community. He recently started a new video blog called “My Autism My Voice,” where he discusses a variety of Autism-related topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerrymagro@gmail.com or through his Facebook page here.

I often asked myself where I would be when I grew up. Some of the questions I asked myself were…

  • Would I go to college?
  • Would I live independently?
  • Would I have a job?
  • Would my dreams come true?

These are some of the more simple goals for adulthood that people strive to achieve but for me it was always something more. You see, when I was I was 4 I was diagnosed with autism. In my life I’ve gone through countless challenges to get to where I am today. Today, I’m a college graduate, living in an apartment with 2 of my close friends and am a hired consultant for Autism Speaks.

One of the bigger problems I see out there in the autism community today though involves when children like I once was grow up. Where do we go? What do we do? What services are there to provide and protect us? When I was growing up, I was lucky enough to have a strong and loving support system at home to help me even in my darkest hours. This is where I’m concerned for the future and which is why I strongly support the work done here by The Daniel Jordan Fiddle Foundation.

Today, we have over 1.5 million people in The U.S who are living with autism. I think one of the main things we forget when we look at autism is that autism doesn’t just go away once you hit 18. It’s something that is a part of who you are for your entire life. Many autism-related organizations and resources today often focus on how to help with children, how to help with early intervention, what treatments to use, but when it comes to resources for adults I think we are still missing out.

And at what cost will this be for our loved ones? Children do become adults at some point. The transition into early care services to adult services needs to be a smooth one and we are not there yet.

So what can we do? First I truly believe we must focus on a long-term perspective of what adults need. Autism is a very wide spectrum. I often tell people, “If you know one person with autism…well…you know one person with autism.” We must look at the range of what is needed between treatments, services, housing, employment, etc. We must have a blue print of what this looks like as well which is why I’m very grateful for Daniel Jordan Foundation’s initiative focused on Blueprint Programs of what this looks like.

At the end of the day though I think our best strategy involves focusing on awareness efforts. If we look at it for example as parents saving up for college for their kids we need to start saving up on awareness efforts so once the time comes we know what’s needed and how to provide it. That’s the challenge that lies ahead for our loved ones when they grow up.

Let’s make the effort for that tomorrow, today! There is so much hope out their within our community so let’s stay focused, stay motivated, and keep making a difference! Good things lie ahead if we do it together!

Ten Thoughts To Enhance YOUR Health and Well-Being

Recently I had the great pleasure of being asked to deliver the keynote address to the faculty and staff at one of New Jersey’s most outstanding programs for children and young adults living with Autism, The Phoenix Center.  The day was focused on the health and well-being of the awesome educators and administrative staff who like many in the field of special education (and regular ed too) give their all everyday to others but often have little time to recharge themselves.  The interactive exchange we shared together left me inspired and I hope it will inspire you too…Here are the ideas the insightful Phoenix Center team shared as they explored how to improve their own health and well-being…as good of a TOP TEN LIST as I have ever encountered:

  1. Carpe Diem
  2. Be Positive
  3. Get Rid of Negative People
  4. Cultivate Your Support System
  5. Never Lose Faith
  6. Walk Tall
  7. Take a Breath
  8. Be Inspired by Children
  9. Have Hope
  10. Live Gratefully

The Daniel Jordan Fiddle Foundation Ignition Grant Award for Innovative Young Adult and Adult Autism Services

The Daniel Jordan Fiddle Foundation, a national Autism organization focused on developing, advocating for and funding programs for adults living with Autism Spectrum Disorders (ASD) is known for innovating opportunities that target the needs of the individuals on the spectrum. http://www.djfiddlefoundation.org
The UJA Federation of New York is the world’s largest community based philanthropic organization that raises funds to sustain more than 100 health, human-services and community building agencies. http://www.ujafedny The Hilibrand Autism Symposium at the UJA Federation of New York is one of Autism’s cutting-edge annual events that brings together scholars, news-makers, community support systems and service providers. Combine all three of these forces and the result is certain to ignite ideas, and in this case, directed specifically towards programs for adults living with ASD.
During last Spring’s Hilibrand Autism Symposium all three organizations announced the creation of The Daniel Jordan Fiddle Foundation Ignition Grant Award for Innovative Young Adult and Adult Autism Services. (DJF Ignition Grant). At this year’s upcoming symposium scheduled for April 25th in New York City, the first program to receive this award will be unveiled. The DJF Ignition Grant is designed to stimulate the development of an innovative program for adults living with ASD or young adults as they transition to adult life (age 16 or older) by encouraging UJA Federation of New York agency organizations to submit proposals to develop, create and sustain new ideas.
The DJF Ignition Grant award that is matched by UJA Federation of New York, provides seed money to pilot a new idea in the field of adult Autism to enable people in this age group to have access to opportunities that will allow them to achieve additive levels of independence. The program idea can address any area relating to adult life including social skills, employment, education, social/sexual development and housing/residential initiatives; no matter what the program , it must push the boundaries of what is already available at UJA-Federation agencies in New York and capitalize on unrealized potential.
The first DJF Ignition Grant recipient fulfills the goal these organizations imagined and that adults living with Autism have been asking for: a program to help them form, maintain and navigate healthy interpersonal relationships. The JCC in Manhattan is the recipient of this $10.000 grant that expands it six year old Adaptations program geared towards adults in their 20s and 30s and creates four different social support groups for adults on the spectrum. Groups are co-facilitated by experienced professionals, consist of 8 to 12 individuals and meet every other week for one/two hours .
The focus of this new program, which interestingly addresses issues raised in Amy Harmon’s New York Times front-page story, “Navigating Love and Autism,”, is on sexuality, dating and intimacy offers a supportive and safe setting to explore these topics . The Social Learning Support Group, one of the four groups in the program, is geared towards young adult participants with an Asperger Syndrome diagnosis. In this group, participants learn and practice navigating social situations such as body and volume awareness, self advocacy, dealing with anxiety conversation skills and developing friendships. Group members have the opportunity to apply the skills discussed out in the community. Participants also receive individualized support within the context of the small group. The Social Learning group now has 12 active individuals with a facilitator from the Mount Sinai Seaver Center and an intern from Adaptations who is with the group for her second year. Additionally, the group has two other interns involved. The group now meets for an hour and a half; thirty minutes are spent discussing a particular lesson with the entire group and an hour is used for small groups discussions. This new Social Learning Support Group has created a space for its participants to socialize, learn and grow together.
The GirlFriends Group is another support group in the program and brings girlfriends, in this case young women on the spectrum, together to experience the bonds of friendship through laughter, tears and advice when needed . Having a strong network of girlfriends makes women healthier, happier, more successful, less stressed and more confident. The GirlFriends Group helps participants establish lasting friendships. There are currently 9 regular female participants who are benefiting from the group’s work on navigating the social complications of female friendships.
The Dating – On and Offline Group has been quite an experience and experiment according to the program facilitators. After several years of hearing about people’s desire to date and discussing dating issues one on one with participants, Adaptations is finally able to do so in a group setting. This has allowed participants to receive help in creating their own dating profiles, and explore issues of boundaries and safety when dating online. Participants have expressed that they now feel more comfortable dating on line. This group has also allowed for the creation of a forum for the participants to start asking questions that they have kept inside for so long and to gain support from their peers (eg:“How do I ask someone out on a date?” “How do I know if they like me?”, or “ How do I know when it is appropriate to kiss my date?” etc.) This group is still in its infancy phase where people are just excited to have a place to ask questions, feel validated in not knowing the answers, learn how to better understand social cues and ultimately improve their self confidence.
The fourth support group in the program ,that is still in formation, will focus on building confidence in dating and social relationships in the context of the larger community outside the program. Other future avenues for this DJF Ignition Grant program include dating and mingling events and the implementation of a safe, secure on-line dating website just for program participants to use within the confines of the program. To achieve this part of the program, a partnership with Pace University and the Seidenberg School of Computer Science and Information Systems has been established. Pace Assistant Dean and Director of Special Programs and Projects has agreed to take on this project and has began development of the site along with the experts Adaptations.
The Daniel Jordan Fiddle Foundation, UJA Federation of New York and the Hilibrand Foundation are looking forward to the growth of this first Ignition Grant Program and aspire for it to serve as a model for the development of similar programs in communities everywhere.

It Doesn’t Hurt to Be Bold…

Did you ever notice that some people are naturally outspoken? I sometimes watch in awe as these fearless folks wave their arm up to be recognized at public forums or at meetings and now even in social media. Although at times, we less outspoken souls roll our eyes or wince when the floodgates open, often it doesn’t hurt to be bold, and can actually be a good thing. Boldness can help define issues, boldness can give voice to the unspoken and boldness can help fulfill dreams.

Arianna Huffington who wrote,” On Becoming Fearless…in Love, Work and Life,” contends that we can be assertive without sacrificing charm and humor. I fully subscribe to the notion that it is all in the presentation—or at least a good deal is. Part of this is taking what we have to say seriously but not taking ourselves too seriously. And one other thing my grandmother taught me, and maybe yours taught too,” you get more flies with honey than you do with vinegar.”

When I think about the most effective and persuasive people I know, they share certain attributes that make them successfully and non-offensively bold. First, they know who they are and what they stand for: call this self-confidence or self-awareness or self-actualized—all are good descriptions. Next, they are not obnoxious or offensive, rather they express themselves without attacking in a calm way that engages. Another attribute these well-spoken speakers possess is their ability to get their point across in a way that is respectful of their audience without coming across superior or humorless. Finally, and maybe most importantly, they do not have to go on forever with their thoughts and skillfully state their case and sit down.

It doesn’t hurt to be bold when we have something we believe in, and we think it through before we speak. At times we do not express our thoughts for fear of being criticized or misunderstood and these are compelling reasons not to be bold. But to not speak and wish you had may have more dire and long lasting consequences. It doesn’t hurt to be bold but like in all things, be mindful of moderation.

When life makes you cry…

When life makes you cry, realize that is a healthy reaction to stress, loss and occurrences that touch your heart—good or bad.  Often we feel or are taught to keep emotions in but if we do this and never release, the consequences can be dire, affecting our health and relationships.

Sometimes a life altering event will occur and we are initially numb.  It seems strange that tears do not fall and to the general world we seem okay.  But then, months or years later the tears flow, almost randomly—but it is not random.  Emotions have been brewing and then, when a trigger occurs, they boil over, and the tears flow. Finally, all those bottled up emotions are released, or begin to release—although painful and difficult, this is a good thing and a first step towards understanding and recovery.

When a person is diagnosed with an Autism Spectrum Disorder (ASD), no matter what their age, it is a life-altering discovery.  Often it is painful, confusing and fear is prevalent.  It is okay to cry and probably important to cry.  The world as we expected it to be is not at all what we anticipated and we need to realign our thinking.  There can be a kind of mourning period as we let go of the imagined life and come to grips with a new reality.

Crying is a cleansing that is private and shared with those closest to us.  Crying is a cleansing that can be shared with professionals who can help guide our thoughts. Crying helps us transition and go forward.

During our lifetimes, we will all shed some tears— sad tears, happy tears and many other kinds of tears–markers of our humanity and our courage.  When life makes you cry…cry!  It is healthy to a point and for most of us, it will end and we can begin again, freer, fresher and clearer. If not, seek help, support and guidance, do not go it alone!

Embracing Love…and not just for Valentine’s Day!

“Ugh, Valentine’s Day!” you say, “not that time of year with chocolate promises of undying love and sparkling jewel like proclamations of forever us.” Now come on, don’t be such a nay sayer…this time of year does get us thinking, for better or worse, about the love we have in our lives and the love we are seeking. Thinking about love is really the first step to embracing love.

There are countless personal definitions of what love is or should be and surely you have your own specific thoughts on this topic. In terms of Autism and love, there have been several recent articles on the topic, including a very good one recently by Amy Harmon in the New York Times that profiles a young couple and their challenges and joys seeking love. The Daniel Jordan Fiddle Foundation Ignition Grant Program with UJA Federation of New York is focused on helping adults on the spectrum navigate the course of their love lives through support groups, social networking and dating advice. This will be a pioneering program that we will share so that adults living with Autism everywhere can benefit from the support systems that evolve from this program at the JCC in Manhattan in the coming months.

There is no question that all people seek love and need love but why do some more successfully attain love? I think one of the reasons is that they embrace love. Embracing love is opening yourself to love and putting that out there to others. Your own kind gestures and loving attitude towards others is a way of embracing love. Many say that one has to love oneself to attain love—but I am not so sure about that. How confident are most people that they feel worthy of love and why should we put that pressure on ourselves? Embracing love is more about lovingly be a part of the world in the kindest way that feels right to you. And once you embrace love, I believe that love will come back to you.

So this Valentine’s Day, instead of feeling down and out about love, embrace it! No you don’t have to walk around passing out chocolate hearts to people, but a few smiles or an act of kindness towards someone could open a new door of love in your own life.

It Takes a “Super Team”

This weekend, much of the United States, and many throughout the world, will be focused on the Super Bowl! Families and friends will gather around the biggest tv they own and a fortunate few will be there in person to cheer on their favorite team (or the team they like better of the two)!

I have watched a couple of the pre-game interviews with players and what strikes me is that no matter who is being interviewed, every player remarks that it is “teamwork” and the “whole team” that got them to this magnificent moment. It occurs to me that no matter what we do in our lives, building a great team is one of the essential ingredients to success.

So how do you build your own winning team? It starts from the center, the captain, and that is YOU. Next, supportive family members who are not judgmental and do not try to be captain but support and encourage you, offering advice when asked and gently bringing ideas to your attention that could help, would be an asset to your team. There may not be many who fit this profile, but even one such person would be a valuable member of your team.

Next, and this may be much easier because as the saying goes, “you can choose your friends, but not your family,” recruit your best friends to join your team. These friends undoubtedly come from all parts and phases of your life and each one has something special to add to your team. Some will add humor, some will add wisdom, some you can cry with and some will be as angry as you are when lousy things happen in your life. All of these team members are essential to your super team.

Professionals are important team members that you will call upon from the bench as needed. They will have expert traits and talents that enhance specific projects and goals. Having a great lineup of bench-warmers is vital to any great team.

When you watch the Super Bowl this Sunday, observe how the quarterback pulls the team together and calls the plays and how everyone else supports his call. I will never contend to know much about football, but I think we can all learn from this gridiron game that building a great team is the backbone for achieving goals and conquering challenges.

I

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