Friday, December 30, 2011

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" 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

Sunday, December 11, 2011

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.

Tuesday, November 29, 2011

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 ......

Tuesday, November 22, 2011

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 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!

Wednesday, November 9, 2011

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 
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… is a young man who is thriving both physically  and mentally. So, look at me now!

Sunday, October 2, 2011

Jimmy's painting and his written remarks from the U of MN WineFest #17 Kickoff October 1st, 2011

Café at Night                                                          
by Jimmy Reagan

Hi   I'm jimmy reagan. I'm eighteen years old and I'm an artist. I chose the painting café at night  to share with you tonight.    café at night - when I   started this painting I decided to use orange, red, and yellow
to show a contrast between the blues and the bright colors. the round yellow stars shine brightly in the night sky.  the small round tables on the patio sit empty.   the café has just closed for business.  the candles in the lantern are still lit showing that customers were just there .   I like to use tick marks. they make a dramatic effect to show where the patio ends and the sidewalks begins.   the café and the shops across from it cast their light onto the darkness of the alley.   the shops are painted a dark blue to show that they are in the shadow.  the café is in bright yellows and oranges because of the moon light shining on it. there are windows with shutters above the café as well as the orange awning show themselves vividly because of the clear night and the bright moonlight.  I hope you like the painting. I am very proud of it. thank you for supporting the arts, the amplatz children's hospital and winefest 17.

Tuesday, August 23, 2011

Here is the "The Bull" completed

 Jimmy with his finished painting, "The Bull."

He decided to use tick marks in the background
Do you think the background looks like a farm field or people in the crowd at a bull fight?

Friday, August 19, 2011

Jimmy Reagan: An Autistic Artist at Work

Many people have asked how Jimmy works.  So, I thought that I would take pictures of him as he is working to help others understand.  He is constantly evolving.  It is always exciting to see what he produces. Enjoy!

Tuesday, July 26, 2011

Autism: Living in a literal world where "you're different from the rest.' Jimmy Reagan

Girl with Eyelashes by Jimmy Reagan
I recently read "the curious incident of the dog in the night-time." by Mark Haddon. The main character is a boy with autism. He sees the world very literally. This character gave me some recent insight into how Jimmy may view the world. The book was recommended to me by Gloria Smith, a lovely woman that we met at the Edina Art Center Young I: A Teen Self Portrait art show. Jimmy's self portrait won an award at this juried show.  His self portrait was vastly different from the others at the show, confirming his tag line when he is upset, "You're different from the rest." Being different as an artist is a gift and we tell him just that. Being different from those in mainstream society is another thing.

When we arrived at the show, we didn't know if Jimmy's portrait would be on display. When we walked in, his portrait was the first one we saw.  In an overwhelmed and excited motion, we quickly moved to view his portrait on display and take his photo with his picture. As I looked at his portrait, the space we were in became more crowded and people were offering congratulations.  I was a bit baffled.  Then Brian said, "looked there is an award next to Jimmy's portrait." A lovely couple, Phil and Gloria Smith, came up to Brian and I to offer congrats.  Jimmy nervously looked around and spied the video section of the Art Center….he made a b-line for the video shelf. The Smith's reinforced how proud we felt about Jimmy's award and recognition.  All along, I thought, the judges had given Jimmy this award because they knew he had autism…they were being nice. We learned that they didn't know about his autism. The judges discussed why Jimmy's work was so unique….it was "different from the rest." The Smiths watched Jimmy curiously.  Jimmy rejoined our little discussion and Phil asked Jimmy, "what grade are you in?" Jimmy responded, "I am six years old." Phil and Gloria had somewhat stunned expressions on their faces since Jimmy was clearly not 6 years old. I responded with, "Jimmy has autism."  They were very surprised and interested. In fact, they were fascinated. Gloria is an artist and was really interested in Jimmy's perspective. She asked if I had read Mark Haddon's book.  I hadn't.  As  a person with dyslexia, reading is laborious for me and I don't read as much as I should. Gloria mailed me the book which I completed a few months ago. She was right, it is a must read.

Since "the curious incident of the dog in the night-time," is written from the perspective of a boy with autism, I found the book really enlightening as to how Jimmy might view things since he can't verbalize it. I found a new perspective.

When Jimmy was entering kindergarten, I was so excited that he would take a bus to school.  In the previous years of therapy, early interventions, etc…, I drove Jimmy 500 miles a week.  This didn't make for a great experience for his siblings who couldn't share play dates at our home or a park since we were usually in the car or at therapy. So, the idea of Jimmy taking a bus to school was a great relief.  He liked being in the car. The first day the bus arrived at our home, a half ton bus with a friendly bus driver, Jimmy refused to get on the bus.  I was shocked.  I had to get on the bus with him riding to school while Dad drove in the car behind us. This routine lasted for awhile. Jimmy was always horrified by the bus.  I was at a complete loss for words.  In near tears I thought, he HAD to ride the bus…I needed relief from our schedule and his siblings needed a schedule that focused more on them. Autism had taken over our lives. After a few weeks of terror when the bus arrived, I realized what might be going on. This was the first time that I recognized that Jimmy's perception of our world was different and his fears were as well. One of Jimmy's favorite books/program was the Magic School Bus.   Miss Frizzle magically takes student on adventures that usually involves some mutation of a half  ton school bus.  I asked Jimmy if he thought the school bus was going to fly and he said, "yes." Okay, now I get it. We assured him that all the bus would do is drive to school and home. We visited District bussing and he checked out many busses. The District Director and mechanics assured him that their busses were different and  no transforming would occur. He was convinced and learned to love his drivers and the ride to school. Chalk this one up to my first recollection that those with autism often have a literal interpretation of life experiences and what they see.

Girl with Red Hat by Jimmy Reagan
Both Girl with Eyelashes and Girl with Red Hat
were created by Jimmy Reagan.  He was looking at the
same photo of a girl with a red hat.  These are
two very different images.
The topic of my last blog discussed Jimmy's upcoming Guardianship hearing. I have stressed about this date and the experience. But, we have shared little information with Jimmy about this event or at least, I thought so. One of our concerns has been Jimmy's movie talk at the hearing.  The movie lines all seem to revolve around lawyers, going to jail, someone being killed and courts. Brian and I met with our attorney to make sure that the judge understands that these are clips from movies that he watches and not reality.  She was grateful for the heads up and said that she'd advise the court.

Jimmy's movie talk seems to be increasing as is his voice volume lately. Typically this is a sign of stress for him.  Jimmy has also been sneaking foods that light him up like a firecracker.  He has been out of sorts for reasons I could only guess until yesterday.

Yesterday, I had a stunning revelation.  Jimmy usually loves Yoga Mondays. Yesterday, was a Yoga Monday. He was squirmy to say the least.  Bridgett our beloved yoga instructor called me into the room where yoga takes place. Bridgett massaged Jimmy's feet while I worked on his arms and hands.  In quiet conversation between Bridgett and me, she asked about the pending court appearance.  Jimmy looked right at us and said, "August 15th you go to see the judge."  He looked panicked. August 15th is a Monday like yoga Monday and is our hearing date. I don't believe we have shared the court date with Jimmy so I was shocked he knew. Evidently, he has overheard our discussion and sensed our distress. I asked if he was scared and he said, "you go to jail." Suddenly, I realized that he thinks that he is in trouble and going to jail….that's what happens in the movies. In his mind, apparently, sneaking food that makes you sick is cause for jail time. I was sick to my stomach.  We reassured him that he was not going to jail and that he hadn't done anything bad to meet the judge. Meeting the judge was a good thing. Later last night I sat on the couch with him and he looked at me intently,( he typically only makes eye contact when he is intent on communicating) he said, "I so scared, I so scared, I so scared." He had tears in his eyes.  I don't recall another moment in his life where I saw tears like this. I can't say that I know exactly what he was thinking….but, fear was very evident. We hugged and he seemed to feel better. We are working on a social story that I hope will help quell his fear and move me past my own concerns. I've suggested that we bring the judge some of his note cards and we'll go out for ice cream when we are done.  All these things seemed to offer him relief. Today, was a better morning.

Understanding a person with autism can be very challenging when you can't/don't see the world through their eyes. Jimmy's art has allowed him to be "different from the rest" in the most positive way imaginable.  Yet, his autism also forces him to interpret the world in a way that is" different from the rest" of us which is full of fear and misunderstanding.  

Life is a journey full of many learning experiences. Those with autism have an exaggerated difference in their perspective of the world that teaches me to be more understanding.  I can't walk in your shoes but, I can try to comprehend the place you are coming from.  

Thursday, June 30, 2011

Jimmysfans at

Hi all, I was just informed that Bobiam is offering a special Jimmysfans discount on the t-shirts that he designed.  If you enter, Jimmysfans in the coupon section on the Bobiam website, you'll receive a 15% discount off your shopping cart! 

$1 for each T-Shirt Sold will be donated to the Amplatz Children's Hospital at the University of Minnesota.

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Womans Rooster Favorite TeeGirls Rooster Comfy TeeMens Blue Cat Everyday TeeBoys Blue Cat Ringer Tee

Sunday, June 26, 2011

What does turning 18 years old mean when you have autism?

July 6th is just around the corner.  For Jimmy, this means that he will be 18 years old. For most soon to be adults, ones 18th birthday is very exciting. For Jimmy, it may feel like just another day with a chance to go to Valley Fair.  For me, Jimmy's birthdays have been a more sad than happy occasion. He didn't have birthday parties as he didn't really understand them, he wasn't really interested in gifts and he couldn't eat the "party" food. Normal teenage milestones for Jimmy have not been marked with the epic excitement of a Driver's License but with a mothers remorse at what could have been. His birthdays remind me that another year has passed where I have failed to help him overcome his challenges with autism. It is a reminder that I have not been able to change his life as I had hoped….drivers license, girlfriends, voting, college, etc… maybe, my expectations and hopes were not firmly grounded.  Certainly, Jimmy has positively changed my life more than I have changed his life.  It is through Jimmy's art that I am seeing his world differently. This July 6th, I am determined to
approach the day differently.   

When Jimmy was diagnosed nearly 16 years ago, we were given marching orders to set in place his services. Brian and I lined up resources with Fraser (, our school district, Speech Therapy, Occupational Therapy and additional help for our five children who were all under the age 5 1/2.  Brian took a leave of absence from his career to help us manage the reams of information that we needed to decipher.  We made our plan and I embarked on a mission to understand, fix, repair and restore Jimmy as best I could. I followed the instructions directed to us by those in the know.  One of the most daunting tasks was the "packet" we received from Dakota County. It  was so overwhelming.  I'd begin reading the information that was intended to be helpful and put it down in tears thinking how can we be in this position.  Educators and Therapists insisted that we continue with the paper work to make sure that Jimmy was protected and services through the County were lined up. Honestly, I hoped that we wouldn't need their help because Jimmy would grow out of his challenges.  Well, the long and short of it is that we found out we didn't qualify for funding  for services and that we would pay for nearly all of Jimmy's care ourselves. In fact, the insurance companies didn't even want to contribute to his care declining services at Fraser and even ear infections.  The battles were fierce.  It was an overwhelming time for us and many many other families who had children in the spectrum.  The upside is that I never thought about the process with County again until last fall when our school district reminded us that Jimmy would be 18 soon….they asked about Jimmy's social worker…...we didn’t' have one.  Here we go again, I was overwhelmed before we started.

So, what does turning 18 mean for your family if you have autism? The documents that I thought I had avoided were back on my desk. The task that I had postponed for 16 years was back with a vengeance and I felt less capable of managing the emotion of what this means for Jimmy, Brian, me and our other kids than I did when Jimmy was 2. The process is full of lawyers, coordination of wills, designations of guardianship, court dates and many "what ifs".  Perhaps, the real challenge is managing through the emotion of what turning 18 means for your family if you can't care for yourself. I hadn't thought about it this way until recently.

A few weeks ago, we met with our attorney to discuss some of the final pieces of the process before we proceed to court to be named Jimmy's Guardians prior to his 18th birthday. We were discussing the ins and outs of guardianship and social security. I found myself beginning to tear up.  I excused myself from the meeting and wept in the ladies room by myself.  I felt, how is it possible that a judge will decide if I can continue to care for my son?  It seemed so frightening. What if the judge takes Jimmy's movie lines seriously?  We joke about it but…what if? I understand that this process is intended to protect and provide….it just doesn't "feel" that way to me.  We have been working with people in the County that wish to be helpful, attorneys who know their roles and all are empathetic. This seems to be more about a mother's loss and reality check than it is about an overwhelming and daunting process.

Anxiety and anticipation are present in the unknown.   Jimmy isn't aware or bothered by what the family faces on his 18th birthday. He is looking forward to going to Valley Fair on July 6th.  He isn't concerned about going before a judge because he doesn’t know what it means. I know that I will be anxious and will unlikely be able to avoid a deep sense of sadness, loss and failure. I had hoped that my skills as a task master, instruction follower, resource builder and loving mother would all have prevented us from the need to go through this process that we are in. Perhaps, my expectations and hopes were misguided.  Yet, those expectations and hopes have helped me positively persevere through the last 16 years.

Jimmy is defining who he is an artist and loving human being who also has autism. He is creating a future for himself that is clearly different than how I had imaged. He won't be able to care for himself yet he has many valuable and unique skills. He has already positively impacted many lives. I am learning to take his direction which his siblings seem to see easier than I do.  Whoever said that my expectations were right?   
Through Jimmy's art, he has created a bright future for himself and I am learning how to follow his lead rather than insert my own expectations. I am determined to fight my natural sadness on his birthday with a sense optimism for his future.  Each time I look at one of his art pieces, I feel a sense of peace, joy, innocence, pride, and optimism.   So, on July 6th, 2011, I plan to celebrate Jimmy's 18th birthday with the same sense of joy and peace that I see in his art and let go of a the sadness that has been hallmark for me on that day.

Saturday, May 14, 2011

Art - Good for Jimmy and Good for us

Art is created and enjoyed by many types of people. Inherently, our society values those that create art.  Art positively speaks to our differences with interest and respect. We all like and dislike different things.  Yet, with art, we respect those differences and elevate them in our society. Differences makes the world an interesting place providing color and depth in our world.

 When it comes to someone with autism, perspective of the world is altered from what is considered normal by actual and diagnostic standards.  Many people with autism, like Jimmy, have heavily restricted verbal means to communicate and engage in relationships. Verbal language is the tool that most of us use to communicate.  What if verbal language is not the easiest communication tool?  People with autism, like Jimmy Reagan, are often challenged to offer their name, make a polite comment, share a joke or offer condolences in the time of need. That doesn't mean that they don't want to express those feelings….How frustrating it must be to have such difficulty sharing what is in your heart and head. I believe that many people with autism becomes frustrated with their inability to communicate.  Just imagine how isolating this must feel.  I believe that this is how Jimmy feels.  He had words until he was about two years old….slowly the words including "Momma" escaped him. Jimmy has suffered years of challenging illnesses and until recently, I never understood that depression and anxiety were a part of his world. His separation and disconnect with those who love him and he loves certainly contributed to the negative spiraling of his health. How would you develop relationships with others, share the world that you live in and be a part of a community that is vital to us as human beings if you can't find a way to communicate with those people? TRY ART.

Jimmy's art has helped him emerge from isolation and has most certainly contributed to the overall improvement of his health. Someday, I'd love to see a research study on this topic. Jimmy "feels" better and certainly "functions" better since he creates art that others find interesting and shall I use the word, "love"? As a parent and someone who appreciates a wide variety of art, I can see how sharing his art makes Jimmy feel. He has purpose and is motivated every time someone tells him that they like his art. His posture is different….not curled over as he has been for years. He is motivation to be in places that demand more language than he can produce.  His stomach pain seems to be more tolerable.  His ability to control his repetitive verbalizations is clearly improved as well.  He's motivated to be in otherwise challenging places.  It also make me and our family feel relief and pride that other people can see the talent in Jimmy that we see.  

Jimmy recently donated an art piece to St. Thomas Academy for their annual auction.  Jimmy and his brothers who attend St. Thomas chose the piece. It was a unique colored pencil portrait called Man from Italy.  It wasn't my first choice and I hoped that someone would bid on it. I learned that a bidding war of sorts took place. I was hearten by this. Then, I received an email from one of our fine U.S. servicemen. His wife had bid on and lost Man from Italy at the St. Thomas auction.  He wanted to buy a print of this work for his wife for Mother's Day. Emotional might be an understatement. I was in the car when I learned this. I pulled over and called my daughter who is in college in Massachusetts….a little overwhelmed….we both felt the warmth of this gesture. It made a difference for us.  His wife loved this piece that Jimmy had proudly donated and helped display.  But, she didn't know how important her desire for this piece might be to Jimmy or his family. But, it is.  It means that Jimmy is communicating with others and it impacts all of us.  Was a great Mother's Day surprise for two moms.

On April 28th, 2011, we hosted an art opening for Jimmy at the Sunfish Cellars in Lilydale, Minnesota.  In January, Brian and I stopped into the newly opened and renovated Sunfish Cellars. We thought it might be a great place to have an art opening with an open loft that seemed very social. Sometime later, Brian and I attended an event at the store, Owner, Bill Miller, asked if we would be interested in displaying Jimmy's art in the store.  Thus, the art opening was born. Some two hundred people attended the event.  We displayed 31 pieces of art.  Jimmy sold 12 original pieces. We were shocked.  Jimmy stayed at the opening for 3 1/2 hours.  As folks came in and mingled, he greeted them with a handshake and "thank you for coming."  He could retrieve these words. I am certain that he thanked everyone in the crowd at least twice and some three times. He was happy to be in the crowd because he was proud of his work and understands that other people enjoy his art as well. Jimmy is motivated by
the positive comments, smiles, hugs and handshakes he receives
when people view his art.

At the opening, I had several parents who have children with autism ask me how I found something that Jimmy was good at….something  purposeful and a way he could feel included in our community.  These are questions that parents of children with autism struggle with daily. I am not sure that we found it for him.  He found it and we followed his lead. Finding a career that is meaningful for someone with autism isn't easy.  In fact, it is very difficult.  But, not impossible or unlikely. 

Several months ago, I attended an autism employment seminar that was hosted by Cargill, 3M, Best Buy, Autism Works and others.  Temple Grandin was the Keynote speaker.  Temple has autism and she  is enormously successful.  When Jimmy was diagnosed, the first book that I read was written by Temple.  This book gave me hope that my autistic 3 year old would have purpose and find his way. Temple is adamant that families find a purpose for their children with autism because people with autism are focused and reliable workers.   They like tasks, they don't mottle up the work area with idle chit chat….they can get the job done. So, hiring someone with autism  seems like it's a no brainer.  But, it isn't.  Our communities need to help create and present opportunities to those with autism.  Best Buy is modeling a new distribution center after a Walgreens distribution center that employs large numbers of handicapped people including those with autism. It is Walgreens most efficient Distribution Center. Their employees show up for work, work hard, get the job done and are happy employees.  People with autism can be very productive.

Where Do We Come From?
 What Are We? Where Are We Going? is a famous painting by Post Impressionist, Paul Gauguin

Purpose is important to us as human beings and is no less important if you have autism.  Purpose can be defined as, " the reason for which something exists or is done, made, used, etc." For centuries, Philosophers and artists have questioned "purpose" and "the meaning of life."  These questions seem to be more daunting for a person with autism and require the help of many to be successful.

As my goals for Jimmy  have changed throughout the years, one has remained the same… him find a purpose that he loves, contribute to his community and be happy.  For now, his love of art and his ability to share it with others certainly helps us feel closer to this goal.

I 'd like to thank Nix Wurdak from Mendota Heights Patch, a local electronic newsletter/paper who  interviewed Jimmy at his opening. Nix has a unique understanding of people with autism.  She also works at Fraser, the largest provider of autism services in Minnesota. " 

Check out her story about Jimmy. 

Jimmy's art is currently on display at Sunfish Cellars.

Friday, April 1, 2011

April 2nd - World Autism Awareness Day

Below is an email that I sent to family and friends in 2008.  The message is still appropriate so I thought I would share it again. Tomorrow is World Autism Awareness Day and today Autism Speaks is promoting Light It Up Blue to raise autism awareness.  Light it up BLUE today, remembers those impacted by autism tomorrow and support those with autism all year long! 
Eight years ago, I began to tell the story of kids with autism along with many other parents around the world. At that time, the autism incidence was reported to be 1 in 10,000 births. Few people felt that autism was on the rise. Families were faced with a dire and often hopeless diagnosis with few alternatives. Physician were puzzled not knowing what to do or how to help families. Today, we know that autism has risen significantly as it effects 1 in 155 children being born.
Last December, the United Nations came together and proclaimed April 2nd World Autism Awareness Day. I am astounded at what has taken place over the last 8 years. I couldn't have imagined the scope of this disease in terms of shear numbers, healthcare needs, family toll and the enormous costs to society. The magnitude is stunning.
Today, April 2nd, 2008 will stand in my mind as a day of relief as the World will take note of these children and their families. It is a call to action for all those who touch families with autism. With the incidence of autism at 1 in 155 births, every person you know knows someone who is suffering with autism. We are all in this together as we look for solutions.
It will be with the observations and actions of many that we will find answers to the causation and effective treatments for autism. Do what you can to help. Collaborate and partner with scientists, teachers, therapists, employers, insurers, government agencies, funding agencies, families, friends and neighbors. Listen well and take action or help others take action.
It is with great appreciation that I send this email. You have been among those that have listened and I trust will help be part of the solution.
Thank you and have a marvelous day!

Thursday, March 24, 2011

Jimmy Reagan - "Where there's a will, there's a way." Eliza Cook

"Where there's a will, there's a way." Eliza Cook

Where there's a will, there's a way." Eliza Cook

This is a quote that describes Jimmy and our family journey.  When Jimmy was diagnosed with autism, we heard….he can't, he won't, don't, stop….etc…. Of course, this was hard to hear let alone absorb given how we thought about Jimmy…..a curious, sweet, cuddly, beautiful little boy.  He was the "engaged" kid…engaged with family, grocery store clerks and the camera. We had three children in just shy of 2 and a half years. Jimmy was the youngest. Marrying somewhat late, we thought that three was the number of children God had given us. As a gift to Brian for Christmas, I decided that I would find an artist to create a beautiful image of our three kids.  I located a seasoned artist who came on several occasions to visit our home and draw the kids as well as photograph them. Jimmy was about a year and a half. The artist stopped me and said, "Jimmy, is the most amazing kid to draw….he is so engaged and has the best eye contact." Funny, I had never heard anyone say those words…."eye contact." Sadly, over the next several years, Jimmy's eye contact would become non-existent, a hallmark of autism.  Our world changed as we added 2 more children and Jimmy was diagnosed with autism.   We learned that Jimmy's condition would alter our family in so many ways.  Not just for Brian and me, but, for all of our kids.

None of us wanted to accept that Jimmy….couldn't, wouldn't, shouldn't.  Verbal communication was very difficult for Jimmy and it still is.  When he was about 5 years old, Brian and I left for the weekend to attend my sister's college graduation. Our daughter was in elementary school at the time and had checked out a book on sign language from the school library. When we returned from the weekend away, Brian asked me what Jimmy was doing with his hands.  Stunned as I watched, he was signing the alphabet. He taught himself sign language while we were gone. For the next several years, we used sign language to help him in school and in public places…it clearly made more sense to him than oral language. I often describe Jimmy as the blade of grass that grows through the tar in the road. He wants to be part of our community and he shows us how it works for him.

Having grown up in an large family, I had dreams of replicating Sunday brunch after Church, teaching my kids to participate in the sports I loved, family travel and so much more. Autism effects family function. Going to Church is one of those activities that becomes handicapped. Being in public placed that require quiet, attention and focus is not easy for someone with autism. As a catholic, it was important to me that Jimmy make his First Communion. The priest at the church that we had been a part of for many years, told us that Jimmy couldn't participate in First Communion activities…."we don't have anything available for him here." Not offering us an alternative, I was saddened by the thought that this personal and family event might not take place. Rather than stop there, I sought out someone who might help us achieve this important milestone.  Fr. Kevin Clinton was the pastor at St. Peter's in Mendota.  I went to see him after mass one morning and explained the situation.  He took my hand and said, "I don't know much about autism, but, I would be happy to work with Jimmy and your family." I was struck by the kindness and openness to the thought of doing something different to accomplish the goal. Having been diagnosed with dyslexia in high school, I knew that sometimes the traditional path to learning wasn't always the best path. Jimmy made his First Communion at St. Peter's in an emotional ceremony. First Communion was scheduled to take place during Mass on Mother's day.  Two week before the big event, Jimmy got sick, a frequent occurrence.  He would struggle to be in church.  I knew that making his First Communion during Mass would be too difficult for him and it wouldn't be fair to the other children and their families who would be with him.  I called Fr. Kevin and sadly reported the circumstances. He said, "no problem, don't worry.  Have your family come to the church at 12:15 (after the last Mass) and we will have an individual ceremony for Jimmy and your family." I was so grateful.  This was an amazing experience watching Fr. Kevin kneel in front of Jimmy and talk with him about what was happening.  It was a moment of peace, joy and tears.  With the help of Fr. Kevin, Cathy Riable and Judy Funk, the milestone was reached in the most lovely way.

I have been a lifelong athlete. I love to watch and participate in almost any sport.  As a kid, my family took regular alpine ski trips and I continued this as an adult.  I married a skier.  Brian raced in high school and we wanted to make sure that our kids would learn to ski. I asked a psychologist if Jimmy would be able to learn to ski and she said "likely not." I was disappointed and then thought…why not? He was coordinated….in fact, he never fell….he had uncanny balance. I was determined to share the family ski trip and teach Jimmy to ski.

 Eleven years ago, we began our annual pilgrimage to Big Sky, Montana.  This family friendly mountain has become a second home for us. When we first put Jimmy on skies, he lit up.  He liked the speed and didn't fall. We used a harness for several years as he was very capable of skiing almost anything on the hill but lacked awareness of others.  Enter Mike, Big Sky ski instructor. We hired Mike to ski with Jimmy and help us rid him of the harness. Mike asked if Jimmy had ever crashed…..I thought no, we hadn't let him with the harness…..Mike said, "best method of speed control is crashing. But, don't worry, I won't let him get hurt."  Well, he was right about that… minor crash and his speed control was much improved. Mike, introduced us three years ago to the Eagle Mount organization in Bozeman.  Eagle Mount makes possible outdoor activities for people with all kinds of disabilities.  They are staff by phenomenal volunteers.  Now, Jimmy skies with folks from Eagle Mount part of the day.  They work with him on control, awareness and challenge his skill level. Skiing is a gift for Jimmy and he has learned to ski virtually any part of the mountain in all conditions. Jimmy skies independently but still struggles somewhat with awareness on the hill.  He loves skiing as much as I do and the rest of the family. 

When I was a kid, my parent bought a piece of property in Northern Minnesota.  There was an ancient tractor on the property. It didn't work and the instruction/repair manual was long gone.  Yet, my dad was determined to get it started.  We took the tractor apart piece by piece to try to understand how it worked and what wasn't working. This has become a lifelong lesson for me as we don't always know how things work or how they should function.  We had to improvise with the tractor and had hope that we could get it running. It doesn't really matter if the tractor ran or not… was the journey as we worked and hoped to help it function. With effort, hope and creativity many things are possible.