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.   

Friday, March 11, 2011

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. 

Wednesday, March 2, 2011

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 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.