Oh, the places you can go!

Orange Cafe at Night - 16"x20"
Acrylic on Canvas 2012

Oh, the places you can go……the world has been expanded for Jimmy Reagan.

Jimmy has excelled in Geography since he was young….memorizing the states, capitols and continents with great ease.  His art pieces are frequently named for places our family has travelled or places he would like to go.  In recently months when we ask him were he would like to travel, he starts big….China, Japan, France, Italy, Australia…..then quickly onto every state in the US.  Travelling by air to these places has never been an option for Jimmy. 

We have taken many trips to Montana by car. But, Jimmy had never been on a plane.  With 5 kids, flying was not our first choice for travel…too expensive and complicated.  Jimmy was 8 when the tragedy of 911 occurred.  After 911, flying with someone with autism just wasn’t something we would ever consider given all the difficulties of even getting on a plane.  When Jimmy was diagnosed with autism the incidence was 1 in 10,000 births.  In 2001, most people still believed that autism was rare. It wasn’t until 2003 that the U of Minnesota incidence study was published showing autism was present in 1 in 250 kids in Minnesota…..more reason not to fly as the public was not well educated on what autism was/is and how to best help families. So, at age 19, Jimmy had never been on an airplane until this week. 

Jimmy with AirTran pilot
 learning about the plane

Sometime last spring, I decided that we should try a short flight to someplace motivating for Jimmy.  Having recently been to the Art Institute of Chicago, I knew that they had a wonderful collection of impressionist and contemporary art….just the place for a motivating trip.  The flight would be short and my sister lives in Chicago….so, if we had problems, I had a back up plan.

Josh and Jimmy at the
Art Institute of Chicago

Jimmy has come such a long way with his health and accomplishments in art that flying for him would benefit him greatly….helping him grow as an artist and human being.  Autism is so isolating for both the person who has autism and their family.   With great hope for success, I started to plan for the trip….preparing Jimmy, me and Josh for all the what if’s for a first flight and walking the streets of a very busy city….both new experiences for Jimmy.

Josh and Jimmy in Chicago

We decided to fly on Southwest Airlines….their reputation and our personal experience for having friendly staff was important.  Flying out of Terminal 2 in Minneapolis (smaller airport) to Midway (smaller airport) in Chicago gave us a good chance for success.  Family friend, Angie MacDonald, works at Southwest.  I called her to ask if we could come to “practice” at the airport before our actual flight.  I had no idea what a fabulous experience would be in our future.

Jimmy in the cockpit of an AirTran plane
at Terminal 2 Minneapolis, Minnesota

Angie connected us with Metropolitan Airports Commissions staffer, Shelly Lopez.  Shelly called me to set up a tour/practice at Terminal 2 last Tuesday morning. On the phone, Shelly asked remarkably well informed questions: does Jimmy use an iPad to speak, how is he with touch, does noise bother him, etc…. I was impressed! Shelly met us in the parking lot. Took us to pick up a pass for security and brought us through security.  Much to our excitement, she took us to a gate where we met Mike Gregory.  Mike arranged for us to meet flight crew from Air Tran.  The flight crew brought us on board…Jimmy got to sit in the cockpit…what a treat.

Now you might think, how did we get such special treatment? Well, the good news is that it wasn’t special treatment. The Metropolitan Airports commission is working with Fraser and other community partners to help people with disabilities fly.  The program will be launched in January…Yippy!!!!!

As you might imagine, I was likely as anxious as Jimmy was about flying. I mentioned this to my sister last week.  She told me about a friend who was traveling with twins who had colic.  The family made small “treat” bags to give traveler who sat near them letting fellow travelers know that they were doing the best that they could under the circumstance and that they greatly appreciated their patience.  I thought this was a wonderful idea. So, I packaged up Jimmy’s note cards to take with us to Chicago.  We handed them out to people who helped us along the way. 

Rosie - 16"x20" Acrylic on Canvas 2012

I have always known that simple acts of kindness make a big difference.  It was never more evident to me than it was this week.  When people first meet Jimmy, they see his challenge to speak and often recognize his disability as autism.  This was the case with many we encountered in our travel to Chicago on Thursday and at our practice on Tuesday.  When we gave Jimmy’s note cards to those who helped us, the response was so rewarding and surprising. The shock at the quality of Jimmy’s artwork given his challenge was evident. The fact that someone said thank you to people who likely don’t hear it very often was remarkable. I feel like we changed  perspectives on Tuesday and Thursday.  Jimmy’s artwork has become a non-verbal means of changing the way people think about him and others in the spectrum…..the people we connected with on Tuesday and Thursday will see people with autism differently.  That wasn’t my plan…..just a great byproduct of a successful trip.  I am just so grateful that so many people were willing and happy to help us open up the world for Jimmy and our family.

Thanks to:

Angie MacDonald – Southwest Airlines

Shelly Lopez – Metropolitan Airports Commission

Mike Gregory – Southwest Airline

Flight to Chicago:

Captain:  Rob Nohrn

1st Officer: Brian Crockett

Flight Attendants:  Emily Scherzberg

Kristy Ramirez

Tina Henry

Flight Home:

Captain:  Kevin Sinibaldi

1st Oficer:  Kimberly Lane

Flight Attendants:

John Theuerkauf

Charles Kallick

Linda McQuaid

William Gordon Winery and Jimmy Reagan 

Wine Labels 

www.williamgordonwinery.com

Wine will be available in retail stores in Minnesota and online at William Gordon Winery in November or December, 2012

A portion of the proceeds from the sale of this wine will be donated to the

Through Jimmy's Eyes Autism Research Fund to promote partnerships for solutions for those living with autism

             

Wheeler "Cafe at Night" by Jimmy Reagan

Here is a link to a new video of Jimmy creating his painting titled Wheeler "Cafe at Night."  The Wheeler family made a donation to the University of Minnesota Amplatz Children's Hospital WineFest No. 17 for this painting.  We are proud to support WineFest and Amplatz Children's Hospital.  http://youtu.be/iYaVrVmnONs

So many questions, so few opportunities, so few resources: How will our communities find productive solutions for the growing population of young adults with autism?

Jimmy and company at the Minneapolis Institute of Arts
with his painting Girl with Cork II

My daughter, Kelly, is entering her last year of college and our conversations have turned to the issues that many college seniors face: What am I going to do when I graduate and where am I going to live? How much money will I earn? Will my work be rewarding? Kelly is an outstanding student, college athlete and has a charismatic personality.  Truly, the world is her oyster. I have no doubt that she will find her way with great success discovering her own answers to these questions.  These questions and answers to them are significantly different for Jimmy and the growing numbers of young adults with autism.

In April of Jimmy’s last year of pre-school, I was concerned about the resources available for him in Kindergarten.  My belief was that there were many kids in the spectrum that would place demands on the system.  So, I made an appointment with our Public School District Director of Special programs. I shared with him my concerns. I asked him what his plan was to support these kids.  He responded, “the demographics just don’t indicate that we will have many kids entering the kindergarten class in the fall with autism.”  I thought that couldn’t be right.  I see these kids on the playground and in my community.  I realized that there was a huge lag in what was being reported.   I suggested that he take a closer look.  Brian and I offered to help secure outside financial help if it was needed.  In July just short of two month before Jimmy entered kindergarten, I received a call from the Director of Special Programs.  He said, “You were right.  We increased from 2 to 12 kids with autism and we have no funding to support these kids in the fall.” I was not surprised.  Brian and I got to work.  Bremer Foundation stepped up to the plate with start-up funding for a new autism classroom.  

Girl From Egypt Painting - 24"x30" Acrylic on Canvas 2012

This experience made it clear to me that planning for the future for Jimmy would take years of advanced planning because he is at the front end of the large numbers of people diagnosed with autism.  Resources won’t be there for him when he reaches milestones.  It would be our job to create them for him. When Jimmy was diagnosed, the incidence was 1 in 10,000 births and now it is 1 in 84 boys.  It seems to me that the kindergarten experience is repeating itself now as we look towards Jimmy’s future as an adult.

Girl in the Forrest - 24"x30" Acrylic on Canvas 2012

Like me, other families are seeing the writing on the wall.  Governmental services are miles behind in what they offer.  We can’t settle for less nor should families have to settle. The time is now to bring to light what families want and need for their young adults with autism.  I have met some incredible people who are helping to illustrate the need and are creating solutions. Privately funded organizations are popping up to bring creative opportunities to the table as well as to make efforts to educate our communities on what people with autism are truly capable of doing while helping communities understand where supports will be needed.  These are new employment and living models.

 Erik’s Ranch and Retreats is creating unique living and career opportunities for people with autism. Erik’s Ranch and Retreat founder/CEO, Kathryn Nordberg, is the mother of a young adult with autism.  She is using her expertise in the Assisted Living industry and translating what she has learned to people with autism.  Kathryn and her team are working hard to understand the unique skills and deficits that are present in people with autism.  In efforts to understand these realities, better solutions are being discovered and put into action.  This concept reminds me of the Johnny Mercer song – “Accentuate the Positive” – we need to be accentuating the positive skills and interests of people with autism while minimizing and reducing the negative pieces that are part of autism and the way people with autism function.

Good Bye Ron - 24"x30" Acrylic on Canvas 2012

Tim Hansen from Specialisterne is also a parent of a son with autism.  His son Joe has learned to and loves to roast coffee.  He has his own brand of coffee called, Cup o’Joe.  This is rewarding work for Joe and they have created a business model to help Joe become financially independent.  By the way, it great coffee! Tim’s work at  Specialisterne focuses on employing people with autism who have unique skills in technology. Companies like, Microsoft, are partnering with Specialisterne to fill critical technology testing positions. Specialisterne will provide the necessary supports and educate companies on what kinds of accommodations employees with autism might require.  This is good for Microsoft and good for folks with autism.

Minnesota Autism Society CEO Sherrie Kenny and her team are partnering with large Minnesota employers; 3M, Cargill, Target, Best Buy, Medtronic, Wells Fargo and Wallgreens to host an Autism and Employment Forum on October 9^th, 2012.  Sherrie is also the mother of a young adult with autism.   Clearly, job creation is on Sherrie’s mind.   We need to develop employment opportunities that will allow people with autism to earn a decent living with hopes of becoming financially independent.

The story is personal for Minnesota writer and film director, Shelli Ainsworth.  The independent film, Stay Then Go, will begin filming next week in Minnesota. It is the fictional story of a mother and her autistic son. Shelli is mother of artist Dietrich Sieling who has autism.  This film highlights the many challenges families face and tugs at the emotion of moving through life managing autism.  I believe that the production of this film is particularly timely, as it will help illustrate realities and hopefully generate discussion and action for solutions.  Jimmy and Dietrich’s artwork is on the Stay Then Go website.  The cast includes Janel Moloney of West Wing and 30 Rock fame as the mother and Matthew Kane as her son whose feature film The Dinosaur Project will be released this summer.  If you live in the metro Twins Cities, keep your eyes open for filming in August and September.

I have offered examples of Minnesota families who see hope and opportunity in autism.  So, how do we respond to the statement: So many questions, so few opportunities, so few resources: How will our communities find productive solutions for the growing population of young adults with autism?

Brian (Dad) and Jimmy with his painting Girl with Cork II at the Minneapolis Institute of Arts

 I suggest that we keep conversations going and have high expectations.  Partner with people who are innovative problem solvers.  People with autism deserve a high quality life and are capable of contributing to their communities in many ways that are very important.  Like the families noted here, we can all play a role in making change.  Put your entrepreneurial hats on and be part of good solutions.   

Links:

www.eriksranch.org

http://cupojoe.mn/story

http://specialistpeople.com/specialisterne-news/specialisterne-now-in-the-usa/

http://www.ausm.org/

http://events.r20.constantcontact.com/register/event?oeidk=a07e65tqwqwaaaed754&llr=kjzvvzcab

www.staythengo.com

http://www.dietrichsieling.com/

http://en.wikipedia.org/wiki/Janel_Moloney

http://www.mattkaneactor.com/

www.throughjimmyseyes.com

Art expands world of Autistic Mendota Heights Teen

Here is a link to today's Star Tribune article on Jimmy: http://www.startribune.com/local/south/162126725.html

In the Star Tribune photo, Jimmy was working on the Goodbye Ron Study.  Here is a better look at these two pieces - he had just started the painting. The title is quite funny.  Jimmy's tutor's name is Ron.  Ron asked him what he was going to name the painting and he giggled saying "Goodbye Ron."    In Goodbye Ron,  the subject is looking over her shoulder as if she is sending off a former suitor. Jimmy's sense of humor.....I like the title!

Disclaimer here: some how Star Tribune thought our barrel top was one of Jimmy's pieces - it is not - pretty evident by the difference in style.  I am not sure who the artist is.  We bought this piece at WineFest a few years ago. 

Goodbye Ron - Study
Pen, Colored Pencil and Pastel on Paper
2012

Goodbye Ron 
Acrylic on canvas, 2012

Jimmy in the news - Edina Sun Curent and KSTP TV

Jimmy starts on Girl with Cork II

Girl with Cork II

Lisa Kaczke from the Edina Sun Curent wrote a lovely article about Jimmy last week.







Here is the link to the Sun Curent article.
http://current.mnsun.com/2012/06/art-changes-how-the-world-sees-jimmy-reagan/


As a result of this article, Ellen Galles from KSTP TV in Minneapolis interviewed Jimmy and me.  The KSTP TV segment should air tonight at 5, 6 or 10pm.

   

Jimmy in ArtSlant

Jimmy is listed as an Emerging Artist in ArtSlant, Chicago.  Girl with Hat is featured. Cool!

http://la.artslant.com/chi/showcases/artshow2?listtype=recent&nv=true&page=6

Virtual Tour - May Be (R)Evolution exhibition , Factory-Art Gallery, Berlin, Germany

Check out this Virtual Tour of the exhibit in Berlin, Germany. Pay close attention to the far right as they scan across Jimmy's painting of Golden Hair Man.  Jimmy wrote a note to Mark Jones thanking him for being included in the exhibition. They included the note in the exhibition.  Nice touch Factory-Art Gallery!

http://www.factory-art.com/2012projectberlin/mayberevolution/virtualtour/virtualtour.html

There is Strength in Numbers

Jimmy with his family and Josh Harrod  as he read about his WineFest painting Cafe at Night

The saying that there is strength in numbers is an absolute truth with autism.  Jimmy's success is the culmination of the efforts of many people in his life.

First and foremost, his family.  Surrounded by the love and compassion of his parents and siblings, Jimmy is thriving. This past Saturday night, he presented his painting, Cafe at Night, to a crowd of well over 700 people.  He was a rock star and received a standing ovation. I am humbled by his success finding it hard not to forget the sickly Jimmy laying motionless on the couch or screaming in pain not knowing how to ask for help as he struggled to find words.  His siblings have always believed in him and his potential. Kelly, Jack, Patrick and Ned have been tireless supporters of their brother.  I am a very fortunate mother of five lovely human beings. As parents, Brian and I, could not be more proud of our children - they are good human beings who support each other.

Secondly, there are the legions of professionals that have help Jimmy throughout the years. One of the more important people in Jimmy's life is is Josh Harrod. Josh has been a constant companion, role model, instructor, friend and mentor of Jimmy's.  As I have said many times, angels surround me and support me in my time of need.  This is particularly true with Josh.  In 2007, Jimmy was so sick that we had to remove him from school.  This meant that not only would Jimmy be home bound, but, so would I. I needed help.  I made calls to find someone who would be a fit for Jimmy and our family. I was discouraged as I just didn't seem to find the right person.  Our oldest son, Jack, was a ski racer and needed new skies and boots.  We took Jack to the store....buying new skies and boots can be and was a long process. I got to chatting with the woman at the store and she

Patrick and Ned holding Jimmy's painting during the Live Auction

asked about our other kids. Our conversation turned to Jimmy and his current situation.  It was a very difficult time for me. This lovely older woman said, "my daughter's former boyfriend is moving back to Minnesota - he works with kids with autism and wants a career in autism." She called him from the store. Josh called me later that day.  I knew almost immediately he would be a good fit. Honestly, I had no idea how good it would be. When I say angels surround me in my time of need, I am not kidding.  Josh told me a few months ago, that the woman that I talked with was only at the store that day as a favor to the owner - she was filling in and did not work there. Josh came to us in a time of tremendous need.  He has seem Jimmy at his worst and now at his best.  He was with us on Saturday night. We are fortunate.

As the evening closed on Saturday night, Brenda Weigel, oncologist at the U of MN, asked if I would talk with a couple who has a 7 year old son with autism. I was more than happy to visit with them.  They said that Jimmy gave them hope for their son.  What an honor to be able to give someone hope.  It is an interesting twist.....Jimmy is offering hope to other families and those families give Jimmy the strength, desire and support to do what he does.  Like I said.....there is strength in numbers!

Factory-Art Gallery- Berlin, Germany, May Be (R)Evolution Exhibit

Here is the link to the Factory-Art Gallery Berlin, Germany exhibit where Jimmy is Guest Artist.  The paintings are on route to Berlin.  Opening is on May 10th and Exhibit runs from May 11th to June 8th, 2012.

http://www.factory-art.com/exhibitions.html

YouTube video of Jimmy Creating Girl with Hat.

Girl with Hat Painting
Acrylic n Canvas, 2012

Girl with Hat and her travelling companion, Golden Hair Man, are on their way to Berlin, Germany for the Factory-Art Gallery exhibit May Be (R)Evolution. Check out this YouTube link that shows Jimmy creating Girl with Hat. You will also see Girl with Hat pastel which Girl with Hat painting is based.


http://www.youtube.com/watch?v=j0FzU8wKWFM

Golden Hair Man Painting
Acrylic on Canvas, 2011

The Sky is the Limit and the Tide is Turning - these aren't really cliché statements!

Jimmy at the Seven Mpls Sky Bar with his Clear Channel Outdoor billboard. 

I have been in a variety of meetings with people in the autism community  in the last few weeks and I have great optimism for the potential for good things happening here in Minnesota. Partnerships that will greatly benefit families are being forged.  We are coming off our islands in search of each other.  I feel a sense of promise that the ship is finally headed in the right direction.

With the development of Jimmy's art, people see and treat  him differently. Our family has always seen Jimmy as a smart kid with great potential.  But never imagined that his art would be on billboards?  Our challenge has been to help others see him as we do.  This is part of the conundrum called autism. I have written about this with great frequency. It seems as though families with autism are make headway as I am seeing and hearing optimism from providers, teachers, researchers, doctors and employers….it is as though the lights have been turned on.  We seem to all be seeing and hearing things in a different way that I am certain will lead to solutions and improved outcomes for those with autism and their families. So, the tide is turning and I feel like it is about time.

Remember that the sky is the limit and be sure to keep your lights on - it will certainly be beneficial! 

Art - Impact and Reach

Three Cows, Oil Pastel and Pen on Paper, 2012 by Jimmy Reagan

Since Jimmy's diagnosis with autism when he was 2 1/2, our journey has been a path full many blind hills and perilous turns which drove our fears of his unknown future spiraling into worry.  When asking physicians what his future would hold, suggestions, potential or even an inkling of a visual image were not offered. How could there be a vision or answers? Autism was a virtual unknown effecting 1 in 10,000 births when Jimmy was diagnosed in 1996. We were a society of the blind leading the blind.

Hanging onto the hope I saw in Jimmy's face was often a difficult chore. Yet without hope, discouragements are easy to see and hard to let go.  I realized early in Jimmy's diagnosis that I was someone who was positive and outcome focused.  At first, I thought others were like me as well.  But, I found out fairly rapidly that many people with newly diagnosed children were not as optimistic as I was and many were devastated without hope. Honestly, I am not sure how I was optimistic….the diagnosis seemed like a death sentence. But then again, I have always been a person who liked the odds for the underdog.  My husband used to describe how we felt about the autism diagnosis as follows: your child has a terminal disease that will last 80 years, he will suffer endlessly, it will cost you a fortune and there are no treatments for his illness . Boy, loads of encouragement there….yet, that was the state of care and knowledge about autism 16 years ago.  Thankfully, our society is making some progress in understanding and care.

Over the last few weeks, I have received numerous emails, had conversations and overhead conversations full of hope.  Hope that Jimmy has generated for other kids in the spectrum and their families.  Truly, I didn't see this coming and I think that it is important to share.



Blue Dog - Oil Pastel on Paper, 2010, Jimmy Reagan



A few weeks ago, I delivered a Blue Dog prints to a pediatrician who purchased it. She hung it in her Clinic office and shared Jimmy's story with her colleagues  - several who had seen him as a patient.  Having many children in the spectrum in her practice,  she told me that Blue Dog would be her reminder that every kid with autism has potential.  She would look at these kids differently.  Not only did she enjoy Blue Dog for the art, she sought to find better understanding of kids with autism as a result of her exposure to Jimmy and his art. I had no idea that Jimmy's art might have this impact. I have heard similar stories from the doctors at the University of Minnesota Autism Spectrums Disorders Clinic where several of Jimmy's pieces are hung. I have realized that Jimmy's art reaches people in so many different ways.

Impact and Reach are interesting words which have gathered new meaning for me. An email was forwarded to me over the weekend from Brian's aunt who recently lost her husband. She used one of Jimmy's note cards to thank a friend who had sent her condolences.  The friend has a nephew with autism and was quite taken by Jimmy's note card and his website. Her nephew is 8 years old. This lovely woman described how she was spending time and working with this young man.  She found Jimmy's art an inspiration for herself and her nephew.  She used the words impact and inspiration several times in her communication.  She believed that Jimmy's website would offer hope and encouragement  for her nephew and his family.  In the last few years, I have thought mostly about how Jimmy's art effects Jimmy and less on how it impacts others.  Truly, I just had no idea how his work and accolades would change the way people think about Jimmy and those with autism.  When Jimmy was young,  we didn't have a "visual" image of what he might look like as an adult or what his future might hold. Jimmy's art offers others that "visual" message that was missing for us.

Italian Coast - Acrylic on Canvas, 2012 by Jimmy Reagan

"Reach"  is defined by Webster as: to stretch out physically or extend as far as a particular place or point. In other words, how many people can you touch with what you do. Recently, Erik's Ranch and Retreats applied for funding from a Foundation.  Their request was turned down because the Foundation was looking to fund organizations that had more "reach" than Erik's Ranch and Retreats does at the moment.  Now at first sight, you might agree - Erik's Ranch and Retreats tour program has less than 10 kids in the program and the Foundation was hoping to "reach" more like 1,000 individuals.  These 7 kids from Erik's Ranch and Retreat will, in fact, offer tremendous "reach" as Jimmy has.  They will show potential to others who had a different impression of what might be possible. They will offer hope and encouragement  to others in the spectrum and their families.   They will "reach" many.



Cow and Goat #2, Oil Pastel and Pen on Paper, 2012, by Jimmy Reagan



Recently, there was a reception for Jimmy in Northfield. The weather was horrible - torrential rain discouraging the large crowd that we had hoped for.  Sales were not the highlight of the evening.  Although, a  group of young artists who share Jimmy's challenges were most certainly the highlight of the night.  This group of young artist in their late teens and twenties arrived with joy and respect for what they saw on the walls. I overheard conversations which went like this: "maybe, I could make note cards and  maybe, my art could be on the walls of this store." Parents thanked us for coming and showing their kids what potential they have. Jimmy's art offers a sense of hope for kids in the spectrum and their families.  We  "reached" many people  on that rainy night. 

Girl with Hat - Acrylic on Canvas 2012, by Jimmy Reagan

The data. Jimmy's website has had nearly 90,000 hits since last May.  He has had visits from countries around the world with regular visitors from the US, Russia, UK, Germany, France, Canada, Sweden, Norway, Argentina and many others.  He was recently invited to submit works for an exhibit in Berlin, Germany. We will know at the end of the month if he is accepted into the exhibit.  He is currently on the University of Minnesota Website Home page.  His work Café at Night  went up on Clear Channel billboards across Minneapolis and St. Paul on Monday. Jimmy's "reach" is worldwide.  If someone told me this was going to happen a year ago, I would have told them they were nuts.

Jimmy's art speaks for itself with joyful color combinations, mysterious and intriguing portraits and subject matter that is easily relatable.  Jimmy can't speak for himself yet his art speaks volumes encouraging kids who share his struggles and their families offering hope when hope seems so hard to visualize.  I never imagined that this could happen.  I am so grateful that he has become a messenger of hope and potential - this may be Jimmy's true gift.  

Jimmy Reagan, Artist - movie

Jimmy has been working on making a presentations of his art. Some of this presentation is directly in Jimmy's writing voice and other parts are in mine. His language is challenged, but he is a great reader.  So, a PowerPoint format works well for him. After Jimmy lost his language at around age 2, he developed a keen ear for music and could hum various difficult classical pieces of music. One of his favorites to hum was Vivaldi's Four Season. So, I thought that it was fitting to pair his PowerPoint with one of Vivaldi's beautiful works.  Be patient with me as I am learning PowerPoint and movie making on an ancient computers. :)

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