Kelly or Grace - 21 years ago today

Kelly in Rome

Today, my daughter Kelly is 21 years old.  Hard for me to believe she was born 21 years ago.  Kelly is my only daughter and cherished friend. Today, she is a junior at Holy Cross College in Massachusetts studying Economics and Political Science.  She has been a member of the golf team for 3 years, is a sports writer for the school online newspaper, participates in a leadership in athletics initiative, is a Dean's List student, has recently been invited to be part of a national honor society among many other accomplishments.  But this doesn’t describe who Kelly is and the difference that she makes in my life.

Ballerina #1

As the oldest of five kids, Kelly has lead the way for her brothers. She is smart and beautiful. By definition, the name Kelly means "Bright-Headed". She works harder than most people I have ever known.   She loves her brother's with more heart and soul than one might think possible. She is compassionate, honest and funny. In addition to her brains and athletic abilities, she can sing.  Her brother's are certain that she would be an excellent American Idol candidate.  Like Jimmy, she is an artist. She has won art awards at the Minnesota State Fair. Perhaps, she is the one who inspired Jimmy. Until recently, she hasn't been producing much art. But, in the last six months, she has made time do a little drawing. I think that these ballerina's highlight the grace in Kelly's heart.

Actually when she was born, we weren't sure if we were going to name her Kelly or Grace. In spite of her frequent clumsiness (certainly inherited from her mother), we often joke about how humorous it would have been had we named her Grace.  The truth is she is both Kelly - "Bright-Headed" and Grace -defined as a "Blessing and Virtue." Kelly is full of grace and strength. She has made it better since the moment she entered it. 

Happy Birthday Kel-bel!

   

High school is over, what's next if you have autism?

Jimmy self-portrait: colored pencil,
pen and pastel on paper 2011

Graduate school, college, community college, interesting and engaging career opportunities or emptying garbage cans and shredding paper: normally developing high school student versa high school student with autism. Does there seem or feel like there is a big gap for opportunities and the way you are thought of if you have autism? It should because there is. 

I attended a college counseling program for my fourth child who is a high school junior last Wednesday night.  The day before, I met with our two school districts who manage Jimmy's program to review his current status and discuss his transition program as he will graduate in June.  I was struck by the stark difference in these two meetings and it caused me to think. 

Jimmy's images on 2009 William Gordon Estate Bottled Cabernet Sauvignon
These six bottles will be auctioned at 2012 WineFest on May 12th, 2012

 While we are creating a unique plan for Jimmy which is being developed around his love of art and his abilities as an artist, it is apparent that most families do not experience what we have for Jimmy.  Clearly, our  experience should be shared by more families; not just mine or a handful of others.  I would challenge educators and communities to think creatively when building plans for kids with autism just like we do for kids that are normally developing.  Many families of normally developing kids, travel the country in search of the right college and scholarships as they work to create a positive environment for their child.  Why does the college search feel so positive, full of potential and transition planning a dead end full of settling and failure?  

Why does the experience and opportunity have to be so different. Brian and I want the same things for both of our boys yet the thought process and experiences are so different.  I think that high school counseling and transition should be thought of in a more similar light.

College and career counseling have a positive connotation. The college bound child will move onto in school and continue his/her learning surly moving onto to a career or additional schooling that will bring them happiness and success.  The word transition, which is commonly used to define the program for those with special needs moving on past high school, implies difficulty and handicap.  Do people with autism stop learning when they graduate from high school?  Are kids with autism no longer able to learn and grow when they leave high school? Is there an inherent thought process that kids with autism stop learning at some point?  Reminds me of the conversation that I had with a psychologist who told me learning basically stops for kids with autism by the age of six. Truly, time to change minds. 

MJ with One-eyed Toad
Portrait of Jimmy's 4year old cousin
MJ with the one-eyed toad she found.
Acrylic paint on canvas, 2011

Over the years in discussions with professionals that have worked with Jimmy, so much of the dialogue revolves around his presumed and sometimes real difficulty in making transition from one activity to another.  All the text books tell us that kid with autism don't like change and they can't move from one thing to the next.  Maybe, that school of thought isn't quite right. We found that Jimmy actually likes change and his behavior is better when  in a new environment.  He doesn't  get stuck.  When we prepare Jimmy for something new, he adapts well. If we haven't prepare him for what to expect, the situation may not meet our expectations.  The challenge is to see things as he might….wear the blinders that he has to wear…..get into his shoes… how might he view the situation.  I don't think that transition issues have as much to do with a new situation/environment as it does with the preparation. 

In  conversations with families about their transition programs, I rarely hear about a program that families are excited about. I ask,  will this program allow the child to excel in an area that will bring them happiness and success.  Most conversation sounds like settling as there are few opportunities that are available. Opportunities for those with special needs is often an afterthought…what is left at the bottom of the barrel.  Parents are often dependent on the funding that is available through the state and school districts…there are no scholarship opportunities. Family resources have been tapped for many years - paying out of pocket for uncovered therapies for their children.  Families are beat down and exhausted.  Let's develop innovative idea that include kids in the spectrum?

Girl from Italy
 Pen and oil pastel on paper
2012

The question might be who really has trouble with change and transition: kids with autism or the rest of us  who  have predisposed ideas of what people with autism are really capable of? Let's think of these kids as we did on the day they were born: a beautiful human being full of potential.

 

So, why do we use the word transition to define the opportunities that might be available to kids with autism. I would suggest a change in terminology and a change in how we think about post high school opportunities for people with autism.  What about environments where kids with autism thrive.  How about the "potential" program rather than the "transition" program?

Rally up you entrepreneurs,  there is a huge workforce on the horizon! We need ideas that will invigorate families and their kids by providing opportunities that foster growth, purpose and happiness.  Let's start the conversation and change the expectations.  My parents taught me as a young kid: if you expect poor performance, you will get poor performance.  If you expect great things, you will strive to attain great things.

Time to change minds and what is next for kids with autism.  

Einstein
Pen, colored pencil, chalk and oil
pastel on paper, 2011

Who is doing this in Minnesota now?

Erik's Ranch and Retreats www.eriksranch.org 

Minnesota Life College www.minnesotalifecollege.org  

Autism: When Purpose + Pride = Function. Erik's Ranch and Retreats aims to make this equation work.

Jimmy in 2007

Reagan kids 2011 Holiday Photo

In one of my first blogs, I wrote about the loss of Jimmy's smile - a giggly happy natural smile. Our family pictures tell a story of a young boy losing his way into a world autism full of confusion and illness.  Over the years, the lost natural smile was replaced with an unnatural forced flat smile - even that smile was rarely present.  His natural smile has been absent until recently.  Holiday photos show a different human being.  I often wonder why the change? Is Jimmy's art making a difference? I am sure that it is. Clearly, he is less trapped in the world of autism.  But why? Might it be his sense of purpose and pride that his art has given him? Is his art responsible for bringing back that beautiful natural smile. Certainly, this is part of the equation. Erik's Ranch and Retreats is an organization that aims to make the equation Purpose + Pride =Function work with their innovative model for young adults with autism . Jimmy will be part of their pilot project this spring.

Equations are logical and make sense to me.  Although many equations seem complicated, others are much simpler or the solutions might be more obvious  than we might think.  Kathryn Nordberg and the folks at Erik's Ranch and Retreat  may have found one of those obvious solutions to what many have thought to be a complicated equation.  The question is how to help young adults with autism flourish and thrive by leading a life with purpose, pride and function.
 

                Purpose is a word meaning an object to be reached; a target; an aim; a goal; a result that is desired; an        intention. Purpose's basic concept is an individual's voluntary behavior activity awareness. Wikipedia

Purpose is important for all of us.  Yet, people with autism are less likely to find jobs that focus on their interests and abilities.  In fact, they are less likely to find jobs period….leaving them dependent on others. Since Jimmy was diagnosed 16 years ago, I've said my goal was to make him a tax payer….that would mean that he had a job and purpose.   Erik's Ranch and Retreats will help develop purpose for people with autism that lend themselves to their strengths.

Jimmy and Karen Kaler at Eastcliff hanging his work Girl with Leaves 

Kathryn Nordberg's son, Erik, loves horses.  He rides weekly, cares for horses and thrives in this environment.  Erik is autistic and struggles to communicate.  Through Erik's Adventures, Erik's Ranch and Retreats will help Erik develop his skills taking guests on trail rides - a career many typical human beings enjoy.  Jimmy creates and shares his art. His work is enjoyed by many including University of Minnesota President Eric Kaler and his wife Karen.  They recently purchased one of Jimmy's pieces for the University of Minnesota President's residence, Eastcliff.  Creating art speaks to Jimmy's strengths and help minimize his weaknesses. Jimmy will be part of Erik's Adventure's pilot project this spring where he will take guests to see his art on display.  Through this program, Jimmy will work on weakness like communication skills.  He is motivated to share what he loves - his art.  So, he is more willing to work on what is difficult for him, like language.

                Pride refers to a satisfied sense of attachment toward one's own or another's choices and actions, or            toward a whole group of people, and is a product of praise, independent self-reflection, or a fulfilled    feeling of belonging. Wikipedia

Pride in what one does is important for a sense of self worth.  Being satisfied in a career choice creates a sense of joy and accomplishment. People who feel good about what they do and who they are stand up straighter, look others in the eyes and have confidence. People with autism, if they do have career opportunities, are unlikely to be offered something that they love.  Erik's Ranch will help identify strengths in young adults with autism helping to create meaningful careers that will create a sense of pride in these people. Everyone deserves this opportunity.

 
             Function is an action or use for which something is suited or designed. Webster Dictionary

 Greek philosophers, Plato and Aristotle , wrote extensively on the topic of  happiness and its pursuit.  Plato used the word  flourish  in his definition and Aristotle wrote that "happiness is a self-sufficient state of the active individual" http://plato.stanford.edu/entries/plato-ethics/. I believe that happiness is the Function that humans beings are suited and designed for.  Thousands of years after Plato and Aristotle wrote, these simple ideas are still true. 

I hope for happiness for Jimmy.  This means that his life should have Purpose, Pride and Function.  I believe that Kathryn Nordberg and the folks at Erik's Ranch and Retreat are hoping to do just this for young adults with autism.  Hats off to Kathryn and her team as they develop their model to help young adults with autism flourish and thrive finding solutions to the equation Purpose + Pride = Function

The Brain - Making New Connections

Jimmy Reagan - Medusa, Oil Pastel on Paper, 2011

Over the last six months, Jimmy's art has been growing in ways that continue to surprise me. The density of the colors, combinations of color and subjects are all evolving. He is changing in other profound ways as well. I delivered some of Jimmy's art pieces to be scanned for printing as few weeks ago.  As the printer perused the portfolio,  he remarked, "Jimmy's work is changing in such interesting ways. I've worked with some artists for ten to fifteen years and their work never seems to evolve. Jimmy's work is really growing.  This is so exciting" I thought this was interesting.  He also remarked, "Jimmy isn't inhibited by what others think." This is certainly true with his art. I was pleased by these comments and is caused me to think.  His tutor, Ron, stopped me on Friday after class and said I need to tell you about something that I've observed over the last several month with Jimmy - it is so exciting. Math word problems have always been a challenge for Jimmy.  Ron stated that Jimmy is now able to complete near age appropriate math word problems. This is a remarkable change. Jimmy is more engaged and seeming to be able to follow multi-step instructions in a way that is very different. All of these wonderful changes seems to be happening together. Is it a change in his health, the way the material/information is being delivered,  less anxiety, a sense of purpose, motivation to perform because of constant positive feedback or is his art changing the way his brain is actually functioning?   I don't know. But, certainly think this would be a fine research question to study.

 When Jimmy was 5, I was told by a very knowledgeable psychologist that neuroplasticity ends at age 6.  

"Neuroplasticity is a non-specific neuroscience term referring to the ability of the brain and nervous system in all species to change structurally and functionally as a result of input from the environment.^[1] Plasticity occurs on a variety of levels, ranging from cellular changes involved in learning, to large-scale changes involved in cortical remapping in response to injury. The most widely recognized forms of plasticity are learning, memory, and recovery from brain damage. During most of the 20th century, the general consensus among neuroscientists was that brain structure is relatively immutable after a critical period during early childhood. This belief has been challenged by new findings, revealing that many aspects of the brain remain plastic even into adulthood.^{[2]" Wikipedia}

 My first thought was that this concept is ridiculous. If this were true, we would all cease to learn or develop complicated thoughts past age 6.  In terms of autism, this established idea allowed therapies to be reduced or eliminated  because the thought was that they wouldn't work and were not of value to be continued. Seems like giving up to me or an excuse to stop working with a challenging human being….how about trying to teach the skill in a different way since we all respond uniquely to ideas, concepts, etc... This is another one of those concepts that just didn't make sense to me. So, I didn't spend much time thinking about how things for Jimmy wouldn't make much improvement after age 6. I believed that his future was full of potential.

 

Since the human body is designed to generate new cells, why would connections in the brain be different? In her late 90's, Brian's grandmother asked me for suggestions for new periodicals so she learn more about mega bit in an effort to complete her daily crossword puzzles. Her neuoplastiscity certainly didn't cease at age 6.  She lost her hearing as a 10 year old and had to re-learn how to communicate. She died at almost 105 and was interested in and learning new things into her 100's. I recently attended a speech by a Dartmouth professor. He discussed the economics of healthcare and employment. He identified some interesting correlations and recommended: new career in your later year, as in your 60's, improves ones health and reduces healthcare costs. Does learning something new and having purpose make us happier and healthier?  My guess would be yes. Does it challenge the brain to develop new connections? I hope so.
 
So, what am I thinking….Jimmy is becoming a different more engaged and healthier human being. What is behind this drastic change? He is able to function in public settings that were previously nothing but frightening for him and us. As of late, his language output seems slightly improved.  I believe that his art is changing the way he thinks and is helping to make new connections in the part of his brain that has seemed to be so handicapped in the past. His interest in art has allowed him to be open to new things. He has found something that he loves that has given him a sense of purpose, worth and perhaps, has improved his actual brain function.

Eyes are the Windows to the Soul

Jimmy Reagan, Study on Eyes - 2009

There is an ancient belief that the eyes are the windows to the soul. Jimmy's images all seem to make interesting statements with their eyes. What the statement actually is, one can only guess. In those with autism, eye contact is often absent. In Jimmy's case of regressive onset autism, he lost his ability to make eye contact.

When Jimmy was about 15 months old, I commissioned a portrait of the then 3 children for Brian for Christmas. The pencil detail of Jimmy in the  Reagan children drawing shown here, illustrates a giggly Jimmy with eyes looking directly at the viewer.  In fact, the artist who created the image of Jimmy commented that he had never drawn a more engaging child than Jimmy -"Jimmy has unbelievable eye contact," the artist remarked. I was so proud of this compliment. Yet, I thought the term "eye contact" was odd. Strangely, I  had never heard the words "eye contact" before. 

Artist drawing of Jimmy Reagan at 15 months

Little did I know, Jimmy would lose his eye contact and engaging smile to then rarely diagnosed autism.  In Jimmy's early 2009 detail study of the eye, the eyes in the study are full of intense emotion.  Perhaps, a longing to communicate or worry of confusion for a task required. 

Mona Lisa with Stars, Oil Pastel on Paper 2011

His study of the eye illustrates that Jimmy chooses to show little detail in the eyes of the many portraits that he has created.  The starkness of ill defined singularly colored eyes has a dramatic impact on his images. When I suggest that he add more detail in the eyes...he almost always ignores me. He is deliberate when creating eyes and it is usually the first part of an image he works on. I always wonder what he is thinking ......



Jimmy, how do you feel? "Are you good?"

Jimmy with WineFest painting, Cafe at Night

Jimmy had his second art show on November 17th, 2011 at

Sunfish Cellars www.sunfishcellars.com. He currently as over thirty pieces on display at Sunfish.  His WineFest painting, Café at Night, was one of the pieces at the show.  This painting has made appearances at  five separate events this fall.  Jimmy has accompanied the painting on several of these occasions.  He is so different at these events; his movie talk in check, the hopping, jumping and skipping virtually absent and his loud vocalizations are significantly diminished to name a few behavior changes. His motivation to be included is off the charts.  I asked him how he felt about his painting and he responded, "are you good." Jimmy feel good about this painting and all the other works he has completed!  His sense of accomplishment is clear as is his joy when other appreciate his work. Thanks for supporting Jimmy and his art. It makes a difference for him and allows him to more fully be part of his community. His art encourages him to thrive in a way that has been so illusive in the past.  Thank you and happy Thanksgiving!

Look At Me Now!

If you have been reading my blog, you know that Jimmy has been a profoundly ill human being most of his life, plagued by infections, allergies, GI distress and failure to thrive to list a few. I was looking through the photos on my phone the other day and I was stunned by an image of Jimmy that I had saved from January of 2007.  We were in the gastroenterologist's office waiting to be seen when I took the picture thinking he was so thin…..but, was content for the moment….I never knew how long that would last.  Jimmy had been so sick weighing only 62 pounds at this appointment….he had fallen off the growth charts having been in the 50 percentile much of life.  Now, he was almost 14 years old and 62 pounds….what was happening???  He looked more like a seven or eight year old. After diagnosis and treatment for failure to thrive (typical of newborn not a teenager), low growth hormone, GI infections and gastritis, Jimmy began to recover from the illnesses that together removed him from school and the interaction of his friends and our community.  He became an isolated human being.

Some may mistake this for typical behavior of a person with autism. Certainly, an untruth forged by media and old ways of thinking about people with autism. His autism impacts his ability to communicate but not his desire to be loved and love, feel joy, have friend and thrive. His illnesses caused him to isolate himself just as it would for any of us without autism.

In 2007 with the help of U of MN doctors, he slowly began to recover.  He gained 10 pound by April yet still looked gaunt, pale and lifeless.

So much was missing for this human being. Depression and Anxiety were certainly a big part of Jimmy's life having lost more of his language with this last illness.  How frustrating and depressing it must be to be unable to verbalize what you want to say. But, this has been the position Jimmy has been in since he lost his first words at age two.  Who wouldn't be depressed when your ability to communicate is lost…..just ask a stroke patient. With the guidance of his tutor and art instructor, art entered Jimmy's life in 2007.  Although Jimmy has great difficulty with conversation, his art has allowed others to see his potential.  His art speaks for him when words are so hard to find. We all feel good when people appreciate our work.  Jimmy is no different. Art had given him purpose and a new found ability to thrive.

Recently, Jimmy donated a piece to the Miracles for Life Worldwide fundraiser http://www.miraclesforlifeworldwide.org/. 

This worthy organizations educates and encourages organ and tissue donation.  Jimmy attended the event where he showcased a few pieces as well as donated one. This was a rewarding evening for Jimmy and our family. Jimmy was engaged with many people he didn't know. They congratulated him and told him how much they enjoy his art. This picture taken at the event speaks a thousand words…..here is a young man who is thriving both physically  and mentally. So, look at me now!