13 April 2010

Light It Up Blue

April is Autism Awareness Month.  Many countries around the world are trying to bring awareness to this developmental disorder by "celebrating" this cause during April.  Kindof an odd way to put it I suppose, but at least it shows that humankind is making the effort to recognize that autism affects so many, and a greater understanding is needed all around.  Doesn't matter to me what word is used, as long as people become more aware.

Autism is a very complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing by 10-17 percent annually. There is not an established explanation for this increase, although improved early diagnosis and environmental influences are two reasons that often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.   (Check out Autism Speaks for more information.  There is no known single cause for autism, but increased awareness and funding can help families today.)

A couple of years ago I had the privilege of spending a lot of time with an awesome little guy.  He was diagnosed as being on the "spectrum", a term often used to describe those who have some sort of Pervasive Developmental Disorder, or Autism Spectrum Disorder.  It is called a "spectrum disorder" because it affects individuals differently and to varying degrees. There are such a wide range of issues, that it is extremely difficult to categorize and pigeon-hole each person, so sometimes the label "autistic" is used as the more generic term.  Not my decision, just seems to be the way it goes.  His issues were more severe than many, but less severe than others.  The "spectrum" ranges from kids with mild language delays and social difficulties, to kids who have no language capability whatsoever and spend their days locked in their own little world.  SUCH a wide array of symptoms that vary between each and every individual, which really makes this such a tricky disorder to diagnose, treat and manage.

Anyway, his mom and dad needed someone with educational experience to hang out with him, tutor him, and just basically converse and socialize with him.  I spent almost a year, 3-4 afternoons a week, working and playing with him.  What a challenge.  This was a kid who could count to 100 in English, German AND Japanese, but would literally poop on the floor of the bathroom if he didn't feel like getting up on the toilet.  He could kick my butt in I Spy, but rarely met my own eyes.  He could read about 500 words (he was 4 at the time), but wouldn't use a fork/spoon to eat.  Sometimes he would laugh and giggle, but rarely at appropriate times, and on the rare occasion when he would meet my eye, or laugh WITH me, it was like the world would stand still it was so amazing.  It was like a little gift each time it happened, and it just made me more determined to see that gorgeous set of blue eyes looking AT me, not through me.  We had a great time most days, and I always had a real feeling of satisfaction when we'd do something different and he'd respond positively. 

I probably learned more from him than he learned from me.  For example, I learned that my bruised feelings, when the "talking" Thomas book I bought irritated him more than pleased him, were incidental and insignificant.  I never realized how grating and loud the book was until he clapped his hands over his ears and started to wail.  My own kids had liked it, or at least tolerated it, but he quickly showed me that everyone has their own threshold and it was up to me to work within HIS parameters.  I think most parents learn to be unselfish, and put the needs of their kids first, but parents of kids who have any type of issue learn this lesson all the more quickly. 

The most important thing that he taught me was to celebrate his passions, large and small.  He had SUCH an intense passion for everything he loved.  Right before I stopped going over there regularly, because he was getting ready to be in full-day kindergarten, his most favorite thing was a book of flags from countries around the world.  He could name EVERY SINGLE FLAG AND COUNTRY, and we'd spend hours examining each one.  There were hundreds of different flags, and I swear, some of them were nearly identical to those from other countries.  Didn't phase him, though.  His singleminded focus was a powerful thing to behold and his parents and I tried to channel that toward other more mundane tasks.  I'd like to think it was working, and I am sure he's continuing to astonish his parents and teachers each day.

The admiration I have for his mom and dad knows no bounds.  Their advocacy for their son knows no limits.  Their extraordinary patience, gentleness of spirit AND steadfast demand that he do all of the things any other boy his age would do, is going to help him for the rest of his life.  He goes to school, church, plays soccer and takes music lessons.  Just like many other little guys his age.  He also has intense speech therapy, occupational and physical therapy, is in special classes, and needs alot of TLC, but all of these things wrapped up in one package are going to help him to be a part of our society at large, just like anyone else. SO many people around the world are affected by Autism.  Not just those who are diagnosed, but their parents, siblings, teachers, classmates.   It can take much patience and love sometimes, but don't we all need that?

Many children with Autism Spectrum Disorders need that special attention, and it is our job as a society to make sure that they, and the adults that they eventually become, get all of the help that they deserve.  Autism is treatable. Children do not necessarily "outgrow" autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes. Currently, the Autism Society estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs for autism (this figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, in addition to related therapeutic services and caregiver costs).

There are several important bills moving through Congress that will have important effects on the autism community – safer educational settings (Keeping All Students Safe Act), better autism services (Autism Treatment Acceleration Act), greater financial independence (Achieving a Better Life Experience Act), better protection against toxic chemicals (Toxic Substances Control Act Reform, introduction anticipated soon), and more. For more information about this legislation and to take action to support it, visit Vote 4 Autism.

Below is text from the United Nations Secretary-General Mr. Ban Ki-moon's Message for World Autism Awareness Day.  I think it SO perfectly states what we should all keep in our hearts and minds when thinking about those in our world with ANY disability. 

"Autism is a complex and inadequately understood disability with a wide range of manifestations. Children and adults with autism – and, indeed, those living with disabilities in general – have a double burden. In addition to the daily challenges of their disability, they must also cope with the negative attitudes of society, inadequate support for their needs and, in some cases, blatant discrimination.

The UN Convention on the Rights of Persons with Disabilities, which entered into force in May 2008, is a powerful tool to redress such situations. It aims to promote equal enjoyment of all human rights and fundamental freedoms by persons with disabilities. As of today, 144 countries have signed the Convention and 83 have ratified it.

World Autism Awareness Day is dedicated to creating greater understanding about autism and promoting universal adherence to the UN Convention. By combining research and awareness-raising efforts, we can provide adults and children with disabilities such as autism the protection, support and full membership of an inclusive society.

As we commemorate World Autism Awareness Day 2010, let us remember that each of us can take on that responsibility. Let us join persons with autism, their families and their advocates in a community of voices for greater awareness and understanding. Let us also look within, and re-evaluate our attitudes and those of our societies so we can remove the prejudices that discriminate against persons with disabilities. Let us dedicate ourselves to creating a fair and caring society that affords true dignity and rights for all."

I am moved each and every time I read that statement and I am proud and happy to be participating in the "Light it Up Blue" campaign being used to promote Autism Awareness Month. It is a unique global initiative designed to help raise recognition and to shine a bright light on autism as a growing public health issue. On April 1, the eve of World Autism Awareness Day, the Empire State Building joined in and blue lights lit up the evening sky! The launch of this inaugural "Light It Up Blue" campaign was a success. Iconic landmarks around the globe joined the Empire State Building in New York City. The Willis Tower in Chicago, the CN Tower in Toronto and Kingdom Tower in Saudi Arabia – as well as airports, bridges, museums, concert halls, restaurants, and retail stores - were among the more than 100 structures in over 16 U.S. cities and nine countries around the world that were lit up in bright blue on the evening of April 1 – the first night of Autism Awareness Month and the eve of World Autism Awareness Day (WAAD), April 2nd. 

To show your support you can wear a blue bracelet, purchase a rainbow Autism Awareness ribbon, wear lots of blue, change your Facebook profile pic, use a blue font, post about it on your blog or twitter.......But mostly, you can just become more AWARE.  That would be the biggest way to support those with autism.

Thanks for reading today and allowing me to use my blog as a forum to talk about a cause that I really believe in.   Some days plain ole silliness abounds, but some days it's awesome to have a blog where you can get on your soapbox, just for a brief moment, and "shine a light" on something truly worthwhile.