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Wednesday, October 24, 2012

Walk for Autism

Bubs 2 couldn't hang
Bubs 1, 2, their mom and I recently walked to support autism. Autism Speaks was the nonprofit that organized this walk. Bubs 1 walked the entire way, while Bubs 2 rode (and slept) in the jogger/stroller. We walked in teams. We walked with Bubs 1's Occupational Therapist's team and had a fun time. The bubs' mom raised almost $250 for the nonprofit.

Bubs 1 and mom walking
We knew about the controversy that surrounded this nonprofit prior to the walk. Apparently, this group uses language, which many individuals with Autism and parents of children with Autism, find offensive. I happened upon a blog while searching the Internet for this discussion on the language issue. I read this writer's comment, "... and I do not want my children, when they're older, to feel that they are diseased or poisoned or otherwise flawed, and it will be hard for them to escape that message given the common perceptions of autism in our society..." and instantly thought about Bubs 1's future perception of himself. How crazy would it be to consider this walk detrimental to those individuals on the spectrum? It would depend on how influential you think language is in our society. It's a deeper understanding than just simply dismissing that idea by stating that the walk is only guilty of raising awareness of ASD. The message I took away from this walk is that ASD is larger than commonly aware in our society, but more to the blogger's point, the walk helped perpetuate the notion that individuals with ASD are different from others, rather than promoting the opposite. We're all human beings, right? There is a discourse out there that says individuals with ASD cannot operate in society. Why not addressing the limits that society constructs and erase these invisible lines of demarcation? There's no need to point out the differences, because those "differences" are a social construction being misinterpreted as biological fact.
Another statistic

I'll be sure to teach both bubs about the construction of language and how power influences a culture's words. I'll also be sure to point out how a dominant culture's language tends to label, categorize and also dismiss cultureal norms outside of the mainstream culture.

Positioned stats along the walk
As both bubs grow and participate in the multiple social institutions they're going to be more and more submersed into the mainstream language (and its knowledge). We'll discuss the rules that will affect their lives. They'll likely question some of them and not others. We'll dig deep into the reasons why some of these rules were constructed. From there, we'll figure out who benefits from these rules, if anyone does at all. It'll be fun to deconstruct the world around us in order to better understand it. This will empower them to be more informed information consumers, which will help prevent them from being misled or unjustily influenced. I make it my job to share this education with them.

Bubs 1 and mom walking
Bubs 1 waves to a cow
Why do I want to do this? As a kid, who grew up with Type 1 Diabetes and I understand what it is like to exist on the periphery of the mainstream. For a long time, up until relatively recently, I wasn't even aware that I was on the fringe. I wasn't aware that my disease had a constructed discourse interpreting it. I simply assumed it all to be scientific "facts." I was different, according to the mainstream. I had no reason to disagree since I was surrounded by this common discourse. I ended up forging a life where I was different. It was subtle in some instances, and huge in others. Necessary? No. My school was the first social institution that reconstructed society and trained me to be different. For example, in elementary and middle school teachers and administrators told me to eat my mid-morning snack in the nurse's office because food was not allowed in the classroom. They were afraid of introducing my diabetic condition into the mainstream, because assimilation was more important. They decided to hide me, which I interpreted to mean that I should keep this disease quiet. And that's what I did. That's how I operated my life. The unconscious turmoil/conflict was never identified and dealt with. Rather, it just came out as low self esteem.
Ocean background

The bubs lives in a different world today. Medical conditions are typically well explained to students in the classrooms - not hidden. I've witnessed many medical conditions addressed inside the classroom when I was observing and student teaching inside classrooms.

Kids understand more than we give them credit for.

Censorship is never the answer and Autism Speaks doesn't act like my school's officials did. In fact, AS does just the opposite. Autism Speaks held a walk and promoted the statistics that describe how many people are different in our society. It's a paradigm shift to think of the limits society places on the mainstream. Instead, we've been trained to point out the individuals who differ. AS falls short of erasing these invisible lines.

Saturday, October 20, 2012

Bubs 1 Turns 4

Bubs 1, mom and Grandpop Bernie
Bubs 1 turned four years old, two Sundays ago. He understood the birthday-concept thing this year too. His mom and I kept the celebration low key, because he's not a big on crowds. At least we don't think that he is. Maybe he'll surprise us one day, but from what we've seen thus far... he seems to function more comfortably in intimate settings.

Bubs 1 about to blow out his candles
Bubs 2 observed. He's learning a lot about life by simply watching his big brother. Their age difference is just over three years, so this automatically makes Bubs 1 a role model for Bubs 2. From what I've experienced so far, Bubs 1 is more of a teacher to Bubs 2 than both their mom and me put together. Bubs 1 must fall within Bubs 2's zone of proximal development simply due to his closeness in age. Being so close in age must make Bubs 1 a more meaningful teacher. His mom and I are just too darn old (and uncool) to be taken seriously. :)

Oh, birthday cake, I can't wait to eat you!
In a few of the pictures, we see the bubs' grandpop Bernie. He makes the trip up to the house, along with grandma Helen, twice a year. They travel up from Lynchburg, VA, where the bubs' mom was born. Grandpop Bernie grew up in Wisconsin and later, Oregon. Grandma Helen was born in the Phillipines and made the journey over to San Fransisco, with her family when she was a little girl. They made their way to the states on a Naval ship, courtesy of her grandfather who never returned home after serving with America during the Spanish American War. He decided to stay in the Phillipines. Apparently, the military honors their return trip no matter how long we wait. Grandma Helen is also a member of the DAR, Daughters of the Revolution. She has ties back to the Revolutionary War. Her grandfather was from the northeast.  She visits the historical archives, in the New York area, whenever up here. She spends a lot of time and works hard to learn more about her American heritage. At the same time, it must help her learn more about herself.

Grandma Kathy circa 1970
Bubs 1 blows out his candle
Bubs 1 was excited when he heard that his grandma and grandpa were coming up. It was exciting for me to watch his excitement. Last year, he was still seemingly unaware. However, this year held noticeable progress with his understanding of what was going on. Now that he's more aware and vocal, it makes me miss the time taken away from my mother, his grandma Kathy. She never had the opportunity to meet Bubs 1, because she passed away 18 years - almost to the day (Oct 4th) - before he was born. It's unreal to write that my mother died "18 years ago" and that instills in me a responsibility to keep her memory alive on this blog, so that both bubs can visit her anytime. This blog can serve as an artifact for them to get to know who she was, while allowing me the opportunity to write about her from post to post. Although I plan to be around a good long time and be a pain-in-the-ass for both these bubs, I'm sure that'll they'll learn a thing or two more about me after reading this blog.

I continue to learn more about myself with every post.

Wednesday, October 17, 2012

Pit Stop Turned Hay Ride

We took both bubs to a farm in upstate NY, on our way home from visiting uncle Vinny, cousins Gavin and Grace. We didn't know that this farm was here when we took a break from the road. It just happened upon us.

Within minutes all four of us were sitting on a trailer, sectioned with bales of hay for seats, hitched to a farm tractor. Our driver was a recently retired history teacher, who pleases his wife by staying out of the house working on the farm. Unfortunately, I'm forgetting his name. Now that it was about three weeks since this trip, my CRS is setting in. I was supposed to have this post up already, but now that I'm working myself... my free time has slipped away. At any rate, I digress. The history-teacher-turned-farm-tractor-hay-ride driver, yes - that guy. Well, he seemed to be enjoying the heck out of his new job and even offered Bubs 1 a seat on the big blue tractor.

At first, Bubs 1 seemed uninterested. He walked towards the trailer, instead of the tractor, when we asked him if he wanted to sit on the tractor. Then the interested seemed to seep into him. This is when Bubs 1 casually glanced over at the tractor, then he looked at us. We continued our encouragement. Bubs 1 stopped in his tracks, smiled and walked back over to me seemingly embarrassed by all the attention. Without asking again, I just picked him up and handed him over to the retired teacher, who placed the bubs on the tractor seat.
 Bubs 1 sat there silently looking around at the big ol tractor. I think he was amazed at the size of it. His no words described it perfectly. We went on to pick out some pumpkins in the patch and returned back to the farm. Our pit stop was done and back on the highway we went.

For the first 11 years of my life (before the shit hit the fan), I grew up in farm land country, in northern NJ. I remember a "Farm and Horse Show," in Sussex, NJ. It was about 30 minutes from our home. I think that we (my mother, brother and I) went there on a few Octobers. I have a memory of a picture (unfortunately not the event... more CRS??) where I was sitting on a pony. There was some other person holding the pony's straps (Bridle?) as they guided this pony in circles around a pen, giving rides to kids like me. I don't remember much else about this fair, but we're also talking about the 1970's so my memory may not be that bad at all.

Bubs 1 told his mom and me that he want's to be a ghost for Halloween. We were surprised, but very happy that he's taking an interest. So a ghost he'll be. I'm wondering if he'll allow us to put a sheet over his head? Not likely, so we'll have to get creative with this costume. I remember being a ghost when I was in Kindergarten (almost the same age as the bubs), but this memory also comes from a picture. There's another picture (where are all of these pictures!!!) of me somewhere standing in front of my old house in a Casper-the-Friendly-Ghost costume. You know the old school costumes with the mask that didn't allow you to breath properly? Yes, those.

Where are all of these pictures of me as a kid? Who knows. I think they were all left in that house I lost when my family fell apart. I'm glad that I'm keeping this blog, because I don't think that the Internet is going to be lost anytime soon.

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