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. www.sunfishcellars.com.  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…..help 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. 

www.mendotaheights.patch.com/articles/mendota-heights-artist-displays-barrel-top-for-winefest

Jimmy's art is currently on display at Sunfish Cellars. http://www.sunfishcellars.com/

http://www.fraser.org/

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!

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…..one 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…..it was the journey as we worked and hoped to help it function. With effort, hope and creativity many things are possible.   

  

Road Maps Needed



Jimmy 2007 at age 14 weighing 68 lbs



When Jimmy was diagnosed with autism  in 1996,  the incidence was 1 in 10,000 births.  Certainly, autism was a rare occurrence at that time and we believed that Jimmy was an anomaly.  Soon we realized that he wasn't the only child with autism as we saw similar children on the playgrounds and were hearing the word, "autism" more and more frequently from our peer parents. The Center for Disease Control and Prevention reports that in 2011 it is "estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD", (Center for Disease Control and Prevention).  This change is quite remarkable in 15 years. 

When a disease/disorder is rare, it is often difficult to locate trained professionals who can assist families in obtaining the resources that they need, or for that matter, find useful answers to questions.  At the beginning of our journey, I wondered why my questions seemed to be so puzzling to doctors, teachers and family members.  Responses that I often received seemed to make little logical sense or offer relief for Jimmy or our family.  Then it dawned on me, that we were at the beginning of, perhaps, a new disease and that answers were not readily available. It would require a collective effort to find useful answers. All of these well meaning doctors, teachers and professionals just didn't have the information yet to provide us with the needed tools. Basically, there were no road maps to help us find our way….the maps hadn't been surveyed, drawn or published. Much work would need to be done.

Lack of solutions for chronic ear infections, intestinal abnormalities, mouth pain and school issues would not be acceptable for us and many other families around the country. Families needed to seek out professionals that would listen to their stories and help create a plan of action.  The task was often daunting as the observations by parents often differed from what had been historically understood by the mainstream medical and educational communities.

We experienced caring pediatricians that saw our family's needs but didn't know how to guide us. They clearly felt at a loss.  I also saw frustrated doctors and teachers give up, feeling inadequate and unable to help. Parents were discouraged and saddened with the lack of solutions. As the number of kids being diagnosed soared, so often did the frustrations of professionals and families.  This wasn't very helpful for anyone.

In 1999, I went to the University of Minnesota in support of a Minnesota Autism Prevalence study. Minnesota Researchers were concerned at the seemingly growing number of children on the spectrum. We believed that if the prevalence was proven to be higher than originally calculated, governmental agencies and organizations would pay  attention allowing pathways for new  funding, services and future answers. It would also hopefully speed the development of new resources. In 2003, the University of Minnesota in partnership with the State of Minnesota Health Department published the Minnesota surveillance study indicating that autism was present in 1 in 250 children.  As a result of this study and many other similar prevalence studies around the country, new funding and research would begin.

The flood gates opened. The MIND Institute was the idea of a couple of dads in California.  They partnered with UC Davis and the State of California to fund and build a remarkable facility to study and care for families with autism.  Autism Speaks was founded by the grandparents of a child with autism and it offers amongst the largest funding streams for awareness and research in the country. Universities like the U of Minnesota are participating in the LEND grant program.  The LEND grant is a Maternal and Child Health Training grant. This grant places various type of Fellowship recipients with medical professionals and families to understand and learn about diseases/disorders like autism.  Medical School students are learning and developing interests in careers in caring for those with ASD.  Help is on the way.

Families, professionals and organizations around the country have partnered together to build the road map.  With the incidence being as high as it is, most people have a personal connection to autism.   As more is learned, the road becomes clearer. Sometime in our future, we will understand where it is that we need to go and how to identify and treat those with autism.  The map is large and we need to continue to draw the lines.   So, think about becoming an autism cartographer and share your talents. 



Life is good when you find something you love.

                                                                                                                                                                                                                                                                                                                                                                                                                                       Over the last several years, I have wondered what Jimmy will do when he grows up. As a family, we have stressed about how to help Jimmy create a meaningful life.  Before he was diagnoses with autism, Jimmy was a bright and giggly little guy.  He was named after his grandfather, a Harvard graduate. Jimmy was smart and I figured he might become an academic.  Most certainly, he would have advanced degrees like his father and grandparents.  At about age two, illness and doctor visits were  a regular part of Jimmy's day.  Loss of language and eye contact  preceded the devastating diagnosis of autism.  We wondered, how could this be? This beautiful child whose future seemed so bright just months before.   One of the first physicians told us that Jimmy might be institutionalize by the time he was ten. Unwilling to believe this fate would become a reality, we provided Jimmy with as many opportunties for treatment that we could find. The resources were limited as the diagnosis was considered rare in 1996 at 1 in 10,000 births.  Nevertheless, I refused to give in to the talk we were hearing.

I see potential.  Everyone has it no matter what the IQ . Potential needs to be identified, developed and nurtured. Over the years, Jimmy's health  Potential needs to be identified, developed and nurtured. Over the years, Jimmy's health was more like a teeter totter and than a straight line.  During one of the health down turns, I came to the sad realization that Jimmy wouldn't go to college and he might not be an independent human being. These were crushing thoughts. We needed to identify what he was or could be good at so that he would have a place in this world.  I often asked autism specialists and professionals what would Jimmy be like and what could he do when he got older. I rarely received a response that I could live with.  So, I developed my own benchmarks which included: 1) Love what you do 2) Do what you love and 3) Life long learning.

Just before Jimmy was diagnosed, I told the doctor that I could show Jimmy how to do a task and he would do it right everytime.  However, I couldn't verbally explain the task to him. When giving verbal instruction, he'd  look at me in such a perplexed way....it seemed as though I was speaking Chinese and not English.  Like many people with autism, Jimmy is a visual learner. In order to keep him engaged when he was little, I drew pictures or use pictures to communicate with him. He taught himself sign languages from a book when he was about five.....another visual tool. He is resourceful in his efforts to communicate with others.  His world makes more sense when communication is done visually.

Art has been in my family for nearly 100 years. My grandmother, Edith Fritz Schneeman, was an artist. My uncle, George Scheeman, was an accomplished artist. My sister, Mary Schneeman Waldvogel, was a studio art major and is an accomplished artist. I dabbled in the arts but never had much aptitude. Although, I was pretty good at making up art projects. With five children just five and half years apart in age, art projects were a frequent part of our household. It was a cheap activity that we could all do together.  I began to notice that Jimmy, who typically couldn't sit at the table for any activities including meals, liked to paint and work on our projects. I mentioned this to his tutor, Pat Pendelton.  Pat liked art projects as well. So, this became an effective part of her teaching style with Jimmy. Pat's friend, artist Krista Walsh, expressed interest in working with a student with autism. Jimmy was a good fit.  Krista began coming to our house. Slowly but surely, he responded to Krista's suggestions. He began to delight in his own creations and was proud of his work.

Jimmy has become a passionate artist. He loves what he does.  He does what he loves and he is learning all the time.  His art is evolving and I can't say that I can see his road ahead.  But, I know that he is happy and that joy is seeming to translate into improved health and function for him.  So, Life is good when you do something you love.