Saturday, March 29, 2014

15, autistic and wary of awareness....

 ~"These are the things that require neither signs nor       labels. Churches, coffins, and urinals all proclaim,
This is what I am.
No questions asked."
~ Andrew Smith~Grasshopper Jungle

  Autism awareness month is about to rear it's weird head..and I have been wondering (after five plus years of blogging)- what more I could say about it. By this point everyone is aware-so, now what? Really? What does awareness mean or do anyway?  This past week-I have learned what it means to my Sam.(I didn't even know that he was paying attention..*sigh*) He is fifteen, autistic..and one of the best people that I know.  He doesn't like the "lighting it up blue" or the puzzle piece symbolism.  In one conversation, he equated all of that with Nazi Germany-telling me that he felt as if he were being marked much like the yellow star or pink triangles from then. He makes a lot of sense-and, being autistic-he has even more of a say in what this month represents to him than most other people. The following (in red) are his words-his thoughts.  the drawing is his as well...So, without further ado-I'm going to kick off this whole awareness month with the thoughts of my son. These are his words.

This month always separates us into two groups-the "afraid" and the "feared".  The afraid, not knowing what autism is- create hate (or the opportunity to abuse) making the "feared"(autistic peoples) lives miserable. The people trying to "help" are filled with pride which makes them feel special.  They always talk about the problems, what "they" can not do and NOT what they CAN do.Making not only themselves blind..but even some autistic people as well- especially when they try and embrace this blindness. They blind potential.  Another part of this parade of abuse...this march of madness..makes siblings who don't have autism look like their lives are miserable. But, the saddest part of this is that a lot of people are too blind to see the truth.  Please end the madness.

Saturday, March 22, 2014

There are no dingo's in Canada.....

~"She needs wide open spaces
Room to make her big mistakes"~Susan Gibson


 When I was fifteen, I knew everything. I did! I knew how the world worked..I knew what I was going to do and how I was going to do it. Everything was crystal clear-black and white-simple. There was no telling me any differently. It was my life and I was going to live it. My parents did not agree. But..after a series of..what I like to call "learning experiences"(my parents would probably have called them "legal issues") It was decided that home was not the best place for me to be. So I left.

  Fast forward thirty four years and I no longer know least, that is what my fifteen year old tells me. The thing of it is-he's kind of right! I am finding that I have lost all sense of what I used to know. I blame my kids. Until I had them-the world was a wonderful place filled with adventures just waiting to happen. After kids-it became a murky place filled with menace..and bad things just waiting to happen. Gone was the happy go lucky slightly irresponsible woman .. replaced by a paranoid loon of a woman who thinks that bad people(or dingo's, werewolves...zombies ) were lurking behind every tree and or bush just waiting to harm her babies!    *sigh* I need to find my fifteen year old self again. Not just for my quickly growing kids-but for my own sanity as well.

  Last week, Sam went on a three day school trip to Quebec. That in itself is amazing.  The kid who we were told not to expect much from- went away with his classmates-for three days! Out of the country! How amazing is that? My boy continues to astound us-daily. When we first heard about the trip back in September-we thought it was a great idea.  In fact, we continued to think it was a great idea...until he left. Then, for whatever reason-my paranoia kicked in. "He's going to a different country! What if he gets lost? What if loses his money? Does he have enough socks?(I gave him 10 pair) Are there dingo's in Canada?" I was crazed..pacing..panicky...mostly because forgot his phone. The special phone that we bought BECAUSE it would allow him to text us from Canada.  The phone that caused Omar to drive in a Keanu Reeves-esque fashion chasing the bus(for a half hour) in order to try and get it to him-he didn't. The phone that he INSISTED he had as he got on the bus-but that I found happily charging in his room when we got back from dropping him off.  Yup-THAT phone. Which led me to rant "I trust him to go out of the country and he forgets his phone-what was I thinking??!!!"  Yup, I was a mess...and it was kind of ridiculous. I admit it. I worried for nothing.  Sam found a way to contact me...and I have some lovely friends who also checked in on him for me. My boy problem solved all on his own..which is what we have raised him to do...which is what he is supposed to do..So why do I have such a hard time letting go? It isn't fair to him.

  When I was fifteen, I didn't have a cell phone..I probably wouldn't have used it if I did..well, at least to call home.I spent a lot of time running wild..leaping before I looked..the hell with consequences-I lived in the moment. Sam, is my polar opposite. He's cautious, he thinks things through...and although he may be a little absent minded at times (PHONE) he is so very responsible. How fabulous is that? And yet-I still worry..although after this trip-maybe not as much.

  Sam came home a different person..or maybe it was just that I was able to finally fully recognize who he is. High school hasn't been easy for him. We live in a very small town-and while mostly everyone has been very open and accepting of him-it is a double edged sword-because he is also known as a special needs kid.  A label he wants very much to get rid of.  He just wants to be "Sam." A kid who does all the things that he does for no other reason other than that is who he is. Maybe I need to look at him with clearer eyes as well. Maybe I need to remember what is was like to be fifteen.

  He came to me the other night and said "Mama...sometimes I worry that I am never going to get out of this town."  Of course I did my best to reassure let him know that he would indeed leave one day-sooner rather than later...that he would find his place and his people...and while I believe these things and know in my heart of hearts that they are true-it still hurts me to see him struggle in the now. I owe him more than I am giving him at this moment. It's time for me to start trusting in who he is.An amazing and decent young man who I am totally blessed to have in my life.

  Right now, we are looking at Summer programs for him..someplace he can go away to..where he can find his feet..spread his wings a little..makes some mistakes-own his who he is.  As long as he remembers his phone...and their aren't any dingo's...or werewolves...I should be o.k.  

Saturday, March 8, 2014

All dogs are service dogs...

~ "Dogs have boundless enthusiasm but no sense of shame. I should have a dog as a life coach"~Moby

I'm not a religious person..Although I do like the idea of heaven.  Not as a place you get to go to because of your beliefs-but rather, because of your actions. In my imagination, heaven would be run by dogs. Dogs have no guile. They live in the present for the present. Wanting nothing but food and affection-and returning the latter in abundance and unconditionally.

  It was almost twelve years ago that Charlie entered our lives.  At the time, I had two yet to be diagnosed boys (3 and 8 months old) who seemingly never slept. Sam, had stopped speaking a year and a half before-and Oscar never seemed to stop screaming. We didn't know what was going on-or what to do to help them.  We were living at out wits end. being the way that we are..did what we always seem to do best in times of great stress-we added to it! Enter Charlie-a rambunctious 8 month old yellow lab. Charlie needed a home..and we thought (actually we really weren't thinking) that we needed a dog.

  I remember the day we brought him home. (We had driven eight hours down to N.Y. to get him and immediately drove eight hours back.  Charlie had been living all alone-in of all places, a mansion...with only servants to take care of him.  He even had a swimming pool. But-he didn't have a family. So we rescued him. Or so we thought.) He bounded up in to the house and came racing out with a dirty baby bottle in his mouth...and then a dirty diaper...and then some garbage. *sigh* The next eight months were filled with his misadventures.  He ate my futon. and my shoes...and lots and lots of diapers. He was so energetic and full of life. Escaping into the woods whenever I tried to leave the house..shredding rolls of toilet paper when I did manage to get out...and to my absolute mortification..running over to the Baptist church that was next door and peeing on the giant cross in their garden-but only when the congregation was present.  I swear that he spent most of his first year laughing at me..especially as I chased after him in my pajama's or other interesting outfits.Our Charlie had a wicked sense of humor..

  He calmed down a bit after that first year..(.although he did occasionally wander off in the early morning hours..making me chase after him...again-in interesting outfits) Choosing to spend his days either at my side or lying in the sun...usually in a place where I was sure to trip over him..The thing of it is-he was always there.  From the first diagnosis eleven years ago, to the last four years ago. He has weathered crying babies, massive meltdowns..sleepless nights..climbing toddlers..birthdays, deaths..everything tumultuous plus all the wonderful that make up this life of ours.  He was part of our family-and we were his pack. My constant companion.  All he ever seemingly wanted- besides his ears scratched..or my lap to sit on(all 125 pounds of him) and the occasional garbage pail mistakenly left open to eat out of-All that mattered to him-was to know that he was a good dog.

  The years caught up to my boy. His vision, his hearing..his hips..they were all gone. And although I could have prolonged his life...let him slowly waste would have been for us. Knowing him-he would have stuck around...again-for us.   We owed him more than that.  We owed him peace.

.Yesterday, we took our last walk together. He and Bandit (another one of our dogs who deserves his own post) took their last steps-Omar and I walked beside them, as far as we could.. Holding Charlie on my legs and Bandit in my arms as they woofed their last woofs, breathed their last breaths..slept their last sleep.. It was peaceful, serene..and in its own unexplanable way beautiful.. My lovely, velvet eared, yellow headed Charlie dog has moved on-and I am bereft.  I hope that there is a heaven for where they can eat dirty diapers and futons to their hearts content.

  I am going to miss my pup..He was a good dog.  

Charlie J Dog
May the wind always be at your back