Life with Autism – When the Opposites Arise

It’s been a few years since I have touched this subject, and I only do so with the greatest amount of care and reverence towards my friends who have been touched by Autism.

This week, the Autism Court (laughing) stating emphatically that there is no link between vaccines and Autism. I know that some parents (including myself) saw their perfectly happy child change overnight after receiving a vaccine… so we look at the ruling as just another way to sweep the issue under the rug. In Jared’s case, he got a major fever after his MMR shot, starting screaming in pain, and would not allow us to touch him that night… and he has never been the same ever since. Just coincidence?

I am not here to debate that now, but it’s merely a point of reference for where I fit into the equation. When Jared was diagnosed with Autism, the Autism rate was approximately 1 in 10,000… today the rate is approximately 1 in 150… many of you already know this and to this day, know one really knows why?

For the longest time and to this day, I have wondered and dreamed about how different Jared’s life would be if Autism did not find him. Back in the day, the resources available for parents of autistics were limited, but the Internet (still somewhat in its infancy as we know it) allowed me to do research from home, which was a godsend, considering how difficult it was to take Jared to the Library without having to have to shadow him at all times.

For the longest time, I looked at Autism with contempt. I began to feel angry, scared, and isolated. I used to say that Niles (Jared’s older brother) was born normal, but anytime Jared crossed my mind, the A word flashed in my mind, to the point where his name at that word where never separated in my thoughts.

I did what many parents in a similar situation does… research and develop a thick skin. Instead of pointing directions, the Medical Community (Autism was not a part of standard curriculum in any US College or University Medical School) and educational communities pointed at each other. I was at the mercy of my health insurance plan for whoever I was working for… and I cannot tell you how many times I have had claims denied because Autism is considered a “pre-existing” condition, or the treatment options were considered “experimental”….. even for routine medical checks or illnesses.

Anyways… I’ll leave that for another time.

When Jared was about 5 years old, I attended the first major Autism Conference in Portland that was sponsors by a local FEAT (Families for Early Autism Treatment) Group, who are strong advocates for ABA (Applied Behavior analysis)…. which has won a court case that allowed a family to choose ABA over TEEACH (which was the only program the School District was offering), which required the School District to pay for the cost of ABA (which can cost anywhere from $20,000 to $60,000 per year).

The featured speaker at the conference was Dr. Ivar Lovaas, the renown (and controversial) Autism researcher who was one of the founders of use of ABA as the primary treatment of Autism.

What I remember of the most from the conference (other than to hear that they were only taking children 3 years of age and under – Jared was 5 at the time) was Dr. Lovaas’s opening statement about the origins of Autism.

For the first time, I heard someone say something positive about Autism (other than Rain Man was pretty cool… like it was some kind of silver lining or consolation prize).

I did not tape it, but the gist of what I remembered is this:

- We do not know what causes Autism, but we know certain characteristics unique to it
- Autism is meant to be here
- Autism is important to to human race (modified Chaos Theory… will explain another time)
- While Autism may be treatable (to varying degrees), but it is still a part of the person who has it.
- Put into context, Autism needs to be understood and accepted

I heard the words, but got lost in the forest. There was no point of reference in my vocabulary to consider Autism as a blessing. Yet it stuck with me… because it was the first nice thing I really heard.

As Jared got older, some things got better, some things got worse. Some things vacillated, which is where how I became somewhat proficient at predicting changes and spurts (by mapping pre-cursors).

As Jared grew up (and as I became more comfortable that I can always find a Plan B at all times just in case), I started taking him to the Zoo on a weekly basis… where I started to teach him social norms (“go around” instead of “in front” of other people) plus he loves animals.

Over the years, I have taken (and in many cases, posted online) several hours of video of Jared at the Zoo, as well as thousands of pictures (many of which I have posted in my bloggo days)… and I have been able to see him grow and change before my eyes…. I came to find out that I was not the only one watching.

In December of 2006, I was approached by a group asking if they can use some of my videos of Jared on their website. This was my first encounter with a new kind of Autism Advocates. These are Parents, Educators, and Autistics themselves who believe that Neurodiversity should be celebrated, and they find it to be offensive that the well-meaning Neurotypical world equates Autism to Negativity… or that there is a cure for something that is who they are.

* http://www.wrongplanet.net/
* http://www.blogtalkradio.com/embraceautismnow
* http://neurodiversity.com/

I was not sure what to do at first… but once I thought about it, it made sense once it sunk in.

From the time we realized Jared was Autistic to the time I really thought about it this way, I have tethered a negative label towards Autism. As analytical as I can be (it’s a tick and my profession), I was jolted by the implications. I began to look at pictures differently, seeing a dazzling star that is invisible to the casual observer. While I had loved Jared with all of my heart, I never found myself celebrating Autism as much as I was mourning it.

I had a number of Pro Autism parents and individuals note Jared’s happy smile, and how cool his shadow dancing was… and as mysterious as it is… it was very interesting and it had a certain beauty to it.

I looked at my friends and listened to their struggles and I still struggled to reconcile this, until I finally found the words and wrote about it. It was then that I realized that I had much more in common with Jared than I ever allowed myself to believe. He is me… just in different proportions.

Part of me felt a sense of calmness fall upon me, but I also felt at odds with myself for focussing on “fixing” Jareds’ Autism instead of celebrating Jared (who happens to be Autistic).

While I believe that in some ways, both perspectives can co-exist… I have learned that both cannot occupy the same space at the same time in the same way.

This doesn’t equate to not fighting for better education programs and medical treatment options to address some of issues that may be part of or side effect… I just refuse to look at Jared as “less-than”, let alone allow anyone else to do so.

Super Bowl 2010

 

Great Game… Congrats Saints!!!

Must be a rush to be in New Orleans tonite!!!

Leaving the Summit

Saturday Night…

I spent part of the day packing, and the rest of the day thinking about what to pack, and what stays behind.

We are moving to Hillsboro, Oregon… which is about 15 miles Northwest on the Plains of the Northern Willamette Valley.

It’s just west of the old haunting grounds in Beaverton, where I lived before moving to the Summit close to five years ago… and the new place is within walking or bike distance of work.

The commute from Lake Oswego to Hillsboro runs anywhere from 30 – 50 minutes, depending on what time you hit the freeway, whos on the freeway, and the weather.

I know I will not miss Hwys 26 and 217 during rush hour… and I will enjoy having the commute time back in my life to spend with the one’s I love and doing the things I love the most.

The new diggs are on the second floor of wooded Commons that overlooks the playground and swimming pool. It has pretty much the same stuff that makes apartment living so convenient… there’s a gym, sauna, and tennis courts on the property, and there are soccer fields, and full size basketball courts just across the street.

I’m actually very excited!

On The Road

 

“The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn, like fabulous yellow Roman candles exploding like spiders across the stars, and in the middle, you see the blue center-light pop, and everybody goes ahh…” —from On the Road  

Monday Night…

I have been meaning to write more, but I am still finding it hard to get momentum.

Writing had become both catharsis and escape, which are not unlike two objects moving in opposite directions simultaneously.

Realities have change… some doors have opened as others closed… and the time that once crawled is now walking on its own.

I look backwards with both nostalgia and caution… it seems that most plans I have made have been filled with detours, occasional dead ends, and moments that I could never have imagined in my wildest dreams.

I lost my parents by the time I was 20, so I have never had the luxury of taking much for granted without a safety net; which is something that Sonya and I share at a pretty deep level.

When my parents left unexpectedly… the world changed around me … realities that would loyally follow me on the path, whether I wanted them to or not.

The Blank Slate

As bad as that may sound, I did discovered freedoms that would otherwise be overlooked… and in some ways, I lost the tethers to my past… I no longer carried a religious or cultural designations (that I can only contribute to saying that it was all that I knew), or family biases… they no longer really applied except in fading memories.

I moved to the Bay Area shortly after my parents passed away and it was like living in a whole new world for me. I managed to make ends meet, with just enough money left for beer, pot, and as many trips that the road would allow.

It was like night and day compared to Pittsburgh (where I grew up)… in the early 80′s, Pittsburgh was reeling from the job loss due to Steel Mill closures, which was the life-blood of so many communities along the Allegheny, Monongahela, and Ohio rivers. By contrast, the Bay Area was bustling with economic life, and it was relatively easy to find work and moving along whatever ladder you so choose. 

While both cities where cultural melting pots, the mix was very different. I loved the change of scenery, meeting new people from all over the US (and world),  the near perfect climate, and the lack of humidity (and lack of mosquitoes)… but what I loved the most was the freedom I felt starting over with a clean slate.

The Air Was Soft, The Stars So Fine, The Promise Of Every Cobbled Alley So Great

As my personal history disentigrated before my eyes… those successes that I defined myself with and the fears of my failures and shortcomings became shapes, colors, and patterns. What I used to believe was real was only real in context.. as two people can watch the same thing, but interpret  what the saw completely differently as meaning is filtered through the personal history or events in the past tense.

I don’t know if it was a coping mechanism or not, but as time drifted, I began to understand (and believe) that our lives were chapters in the book, which allowed me to look at  past in  perspective, as opposed to being tethered by it.

I found that this provided a way of looking backwards with nostalgia, and it provided me with a buffer from the loss I felt from losing my mom and dad that earlier in life.

The same is applicable to the present tense… a notion that was reinforced in the books I immersed myself in by authors such as Carlos Castaneda, Ken Kesey, and Jack Kerouac.. and later by the construct of Soto Zen Buddhism, which I started practicing in the late 1990′s.  

 While the former was fuel by the sense of adventure, the latter had more to do with the need to feel grounded. While they may appear to be paths in the opposite directions, they are really just different vehicles on the same road.

I am still restless at times… but I no longer fight or wrestle with it… I accept that part of my nature will always test boundaries.

If you have been there, you will know exactly what I mean.

Thursday Night

Thursday Night…

It’s beginning to feel like the fall… as the days get shorter and Football Season is upon us.

What a surprise to learn that the Steelers where opening the NFL season tonite (from Pittsburgh). After a long night of frustrating MS Excel Issues, which was mitigated by great sex before bed… tonite’s pace has been an antithesis of last night, and hopefully a pre-cursor of the upcoming weekend.

Jared has been on the back porch watching the sunset and acting out the roles he see’s on TV and his favorite Disney, Dinosaur, or Pre-School videos he can find on YouTube. Jared started school on Tuesday, but the bus driver (who was supposed to drop by last week and never did) went to the wrong unit and proceeded to leave w/o Jared.

Sonya was pissed off (and so was I), but I did not have time to think about it.. and I was just grateful Sonya was home. I do not plan on letting the Bus Driver totally off the hook… instead of just taking off… she could have knocked on the door or waited a few minutes. She was running late and Jared was addition by subtraction.

Getting back to the Steelers… I can’t believe the score is 7 – 7 in the 4th quarter. It’s been one of those kind of games, but only in the sense that it’s low scoring. Otherwise, it’s been kind of a typical defensive battles… either that or the opposing Offenses are making it easier to look good.

Sonya is playing Evony… which is an online Game/Gaming Community and all I can see is shades of blue and black as the sun has officially set. I spent the past few hours going from Point B to A… along with a few stops in between. I picked up dinner on the way home… so no dishes either.

I know that I’m going to crash early tonite… I have been working some insane hours as of late, and I’m starting to feel a little mental fatigue.  I am glad that the weekend is nearly here.

The Steelers are entering OT…. The Titans lost the coin toss… so the Steelers are receving the ball.

<Commericials>

We missed Vampire Diaries (conflict with game)… we will watch tommorrow.

Sonya is a big fan of the Twilight Series… (I enjoyed the first movie… but I’m not much of a book reader as of late)… and Death Cab has written one of the songs on the sound track (Twilight based in the Pacific Northwest… which was originally titled “Forks” after Forks, Washington… the rainiest place on the Continental US).

Steelers are moving the ball… huge 1st down on third and short.

Steelers Won!!!!… Woohoo!!!!

Great end to a great night… now I can crow!

A Random Starting Point

“My witness is the empty sky.” – Jack Kerouac

September 4th, 2009

It’s an early start to a late four day Labor Day weekend.

Nothing major planned today… except dropping Jared (my youngest son) off with Donna (his mom) after she gets off work and running Sonya (my girlfriend) to the Clackamas County DA’s office to drop off some paperwork.

I have some work related stuff to do over the weekend, but I’m going to do my best to keep it off the radar today.

This is the obligatory first post, the ice breaker for those who choose to read my journals or for those who I may randomly cross paths with.

A few things about me:

I was born and raised in Pittsburgh, Pennsylvania… in the suburbs surrounding the Steel City. Both of my parents grew up in Finnish American communities along the Great Lakes and thier lives crossed paths after my father returned from WWII.

In the late 1950′s, my family relocated to Pittsburgh when my father got a job as a Controller with Westinghouse and started to settle down and live the American Dream.  However, their lives were cut short, and by the time I reached 20, I was on my own.

Pittsburgh had three major sport teams.. which sparked my interest in sports at a young age. In Pittsburgh, it was hard not to be a Steelers Fan, but I had a knack for Goaltending… so Ice Hockey became my first love and obsession.

I moved out west after my parents passed away, and I have lived here ever since.

Fate works in strange ways.