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.

cate

A floral bouquet heading to Oklahoma! 

The soul of the matter....

I have been tossing around some thoughts as of late...trying to put my finger on what is missing...what is lost....what is wrong... why is the universe tilted a bit more than it should for my comfort.

It dawned on me today that there is a distinct  and measurable decrease in  the "soul factor"...

I suppose "soul" for many people can be defined in a variety of ways, but for me soul is the heart of the person, their philosophy, and their ethics, their ability to rise above and still when struggling do the right thing.  It's the guy coming home from an all night  shift who sees  a car about to careen into another human standing waiting for a bus, and dives in to save them, risking his own life in the process.

It's the mother who opts for life when she learns her baby has Down's syndrome. It's the coworker who donates a kidney.  It's those selfless, kind hearted acts that we all marvel at and wish we could emulate. It's soul.

It is the life of what and who we are as humans, and it is the loss of soul of compassion and kindness and a darkness that takes over us that dims this capacity and creates the chaos, and unkind acts that for some reason I seem to be seeing a lot of lately.

I love my customers from my little on line store, and their kind feedback feeds my soul and makes me go back to the table to try to be more creative and more productive.

For us all we have those sources of light and strength for our lives. Tap into those sources regularly, whatever they may be..family... work.. religion...volunteering.

Receiving or giving acts of genuine  kindness  are truly food for the soul....

cate

Flowers flowers flowers

I am trying to take the time to conjure up new ideas for flowers - we have shows in the fall and there never seem to be enough flowers available.

If I make blue flowers, everyone wants gray, if I make gray, teal is  the big request.

So I make what I like and hope that others do too.  I have also been concentrating on "baby things." Babies are a popular decorating  theme and I have been obsessed with pink and brown.  Owls are a huge theme at the moment as well. Not quite sure how some critters  move to the top of the animal heap in popularity, but they have been enjoying an upswing for the past year.  I chuckle to myself when I think about the predatory nature of owls and really not the cutesy little creatures to feature at a baby shower perhaps, but we all love owls and we forgive them for the naturally driven predatory instincts... We cut them poetic license I suppose to sit at the baby shower like a fuzzy little friend, (talons and beaks are NEVER part of the allure) and I get some sort of personal chuckle when featuring owls.

They are one of my favorite creatures and I respect them for all they do and they are magnificent to behold should you be so lucky to see one in nature. I saw one many years ago when I was a kid and I will never forget the site of him/her sitting proudly  on our porch railing in the failing light of sunset.

Baby girl garland with baby owl. 

enjoy your day... cate

Finding Center ... in a off balance world

Recently I took a walk past a small garden  adjacent to a walkway in the yard. About a year ago I took the time to stencil words on broken shards of pottery.

I find that many of the things that Andrew does turns into fodder for creativity.  He broke some mugs and they became part of the garden "pottery graveyard." That in turn creates another outlet to create something new from something shattered.

That seems to be the story of my life... creating new  dreams from shattered hopes.

In the depths of despair, Papercatz was born.  When mugs break I create garden memorabilia, when clothes get shredded I use the shreds for recyclable packing. Refusing, I guess on some subliminal level to let autism win.

As I looked at this mini garden I noticed two things; 1. Ripley, our very loved but  maniac labrador had begun to undermine the edges with relentless digging. (I always wonder what is he looking for?) Ripley is very much like the lab from the Jennifer Aniston movie Marley and Me. Loveable but slightly insane and utterly clueless to the chaos he brings to every event.

 Only he knows why he digs. But his newest conquest was the edge of my garden. Last week it was a branch from the butterfly bush, the week before that the hydrangea was almost uprooted. Is he looking for something? Why do dogs dig? Why does Ripley dig? Because he can... and does incessantly.  We have many gopher ankle twister holes in the yard always being filled in, only to be dug out again.  Maybe he could join a dog road crew and get busy cleaning up pot holes. I'll have him ready at 7 a.m. and I'll even pack his lunch if someone would just keep him busy and out of trouble all day!

I digress...

When I looked at my mini garden, after assessing Ripley's renovations, I saw words I had stenciled onto these shards... Hope, Faith, Dream, Laugh and on this particular day I wondered if the exercise of painting these words was an exercise in hope for me that I could remember to practice and participate in these lovely words. Dream? Dream of what? I am sometimes not sure what to dream about or for ... so busy am I just surviving it would seem.  Hope? Hope for what exactly?  and Faith? Faith in what? A cure for autism, a hope for a successful business, health, happiness... what exactly do these words mean?

On this particular day, sadly the words fell flat and I could only stare at them missing their meaning and caught in a vacuum.

Andrew had been particularly diffcult that week and I realized that my "center" - my compass -  was his center. If he was off. I was off. If he was okay I was okay and I never realized my gravity and my balance lie squarely with him... who knew an autistic kid held my happiness in his  moods.. If he is happy so am I. If he is not neither am I. We are dysfunctionally symbiotic...

So this week I try to re embrace those words, plan for the business, create new things and get involved in tackling things long overdue.

I am searching for center... and I am a bit closer to finding it...

cate

Blooms in the Barn

The flowers called to me today - they glowed with light and beauty in the sunlight today and looked beautiful as the twilight came - the magenta peonies were alive with light and dimension. White peonies like summer snow. So beautiful and delicate. I dread the heat that will follow and take away their  cool weather beauty.

I found myself taking picture after picture in the twilight hours. They called me and beckoned  new photos with the dwindling light, the glowed brighter until the evening enveloped them.

Beautiful spring bouquet glowing in the twilight. 

Evening glow in the barn 

Memorial Day has gone to the chickens

Memorial Day weekend has brought about an odd ball mix of weather, but we dawned today with beautiful blue skies, breezy, low humidity day with bright intense sunshine. I love it... give me cool temps and bright sun any day.

Today, the chickens were treated to their FIRST ear of corn. They never forgot their love of corn from last year and immediately went to town on their juicy ear.

I love my chickens - they require little - and yet give a lot.  The girls have been reluctant to part with any eggs lately and the white "chicken" is really a rooster disguised as a chicken. Surprise for us..

So here they are enjoying the low humidity and cool breezes, pecking away at their first ear.

Penny, Paul and Paris - first corn of the summer 

Spring and the garden

Well... the garden is pitiful this year with weeks winning the battle. Weeds 1 Cate 0.

I have made a vow to spend at least 1 hour per day beating back the weeks. I have the most beautiful garden and it is as if nature has conspired with rain and mild temperatures to grow the weeds faster than the flowers.

Beautiful roses are blooming... swooning in the twilight, just electric. Evening is the magical time to take pictures of flowers, they glow. The purples glow deeply and the pinks are neon. BUT only for a shortwhile till twilight overtakes their beauty and puts them to bed.

How simple their lives are, but how fraught with danger from insects intent on eating them and mother nature in the last years wanting to cook them in its heat.

I love early spring/late summer, but I loathe high summer when you bake, sweat and yearn for a breeze.

So for now let me enjoy my beautiful peaceful garden until the tides turn, the sun beats hard and the insects  find them.