Saturday, July 6, 2013

Twenty Steps - Living one minute at a time with autism.... Life unplugged

No one would really know just to look at me that I lead a double life... no not espionage or secret identities, but a life that's  minute to minute versus a life that stretches out for the long haul. I often cannot think past 30 minutes sometimes ten.  It is a visceral life I lead, sometimes raw with stress, pain and frustration, sometimes joy and elation.  

I have a very hard time with the word "normal." Who defines normal.. One day, when I was heavy into knitting I lamented my missed stitches and possibly poor choice of knitting pattern to an older veteran knitter.  She said to me "do you like it? I said "yes." She smiled in a twinkle in the eye sort of smile and said
"Well that's all that matters. There are no rules to creativity.  No judgment."

Wise words.....

So today, living with a soon to be 19 year old with severe autism, nonverbal,  cantankerous and at times strangely unexpectedly volatile I learn to lead with two faces. One that the world sees that presents calm and rationale and the other face that is screaming inside "What do I do now?"

I have learned for parents/people caring for individuals with disabilities from the very youngest to the seniors with medical and intellectual disabilities - there is no charge of the light brigade - as another parent put it - "I was waiting for help that never came."  How true...

There is help and there is hope but it lies within you not around you. YOU are the key to your own happiness or misery.  By accepting this life as a soldier in the army of disability, you are signing onto a lifetime career. Not necessarily the one you like or even choose, but the one that you need to fulfill.  Stress and uncertainty become best friends. Frustration and isolation are your bunkmates.

Sometimes when I up late into the early morning, (loving the peace of the night), I watch Cesar Milan (dog whisperer)he has a lot of wise words that often fit surprisingly well into my situation. He once told a family "You don't get the dog you want you get the dog you need."  Well perhaps I got the kid I need... I thought to myself. What has he taught me?  I had to admit he taught me a lot - much of it good.  Thanks Cesar! :)

When people ask "how do you do it?" I truly want to laugh and answer bluntly "Do I have a choice?"

Last night, while working in the barn in the wee hours of the morning, I heard a door knob turn, (which jolted me for sure) and there was andrew at  1 a.m.  trying to enter the barn. Why  he was out in the yard at 1 a.m. I have no idea, nor can I ask him, I can only pray he follows me back into the house and does not elope further. (Note to self we have to have another alarm on the back door to alert us to this possibility).

I was grateful I am a night owl. What if he had been roaming and I was asleep and did not know?  

Why does he do what he does? What did he want in the barn? I will never know. I just have to now take more precautions than I did already to keep him safe.   It never ends and it never will.  Life is messy.

But then life is messy and difficult for many. I don't feel that my life is any worse than anyone going through tough times, I simply think it is longer. Most difficulties and dramas have a shelf life or expiration date. Death, divorce, has a way of quickly equalizing the misery.

Autism and other disabilities have no expiration dates - they are like a marriage - till death do you part..

For me, working in the barn, breathing life into paper, and creating flowers keeps me grounded and frequently sane. I love my customers, and they inspire me to keep going. When I keep going then so does Andrew and the world rights itself  for awhile.

As the sun sets here I begin to wonder how I should plan this night's autistic adventures.. But locking the door to prevent escape is high on the list of must do's...

So tonight the barn and I will sink into the night together with Andrew hopefully tucked safely inside, 20 steps away.... I have counted these steps funny to say - I have counted them as I have raced across the lawn in snow and rain and now horrible heat. They are all that separate me - and save me -  from life unplugged.


A floral bouquet heading to Oklahoma! 

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