Artificial Freedom - Living the Autism Lifestyle

What is that old Janis Joplin song? " Freedom's just another word for nothin left to lose."

Being a parent is not a job for the faint hearted. Being a parent of a 19 year old with severe autism is not a job for the faint hearted or the faint minded.

The word freedom takes on new meaning.

What does freedom look like? What is it? Freedom to me would mean an unbridled enthusiastic emergence into a world that has no boundaries or boundaries only of your choice. Freedom to get up when you want, freedom from worry, freedom from the day to day grind of reporting in to a job or boss.  Seeing new things, doing new things, freedom to choose what your day would look like.

For Andrew, there is only the freedom we afford him. The freedom to work on new tasks, the freedom to watch a movie, eat a snack when he wants, but he lacks many basic freedoms because of the level of his disability. He needs to get up at a certain time, because to allow him the 'freedom' not to means time to do unproductive things, like taking the hems out of his clothing or shredding papers.  Freedom for him is canceled out by a need to be engaged in more positive activities. But perhaps if he could speak he would like to be free to rip up papers and take some hems out. That is his view of freedom, but unfortunately society does not smile on those activities.

So it is that we establish a system of "artificial freedoms" - creating a schedule of our choosing, not his, that allows him to choose or put in order those activities he clearly does not want to do. What is he choosing? I believe this is merely giving him the opportunity to delay those activities to the end of the list that he finds most abhorrent, putting the least abhorrent first.  Is that freedom?

The voice of reason is also yelling in my other ear and to that voice of reason I answer --- yes I know there are things that must be enforced for safety and well being and I am fully on board with all of that. But to create a "leisure schedule" of someone elses choosing and call it choice seems absurd.

I can never and will never fully decipher the WHY of things  - that establishes that people with autism must learn to: Make eye contact firmly and for prolonged periods of time (I don't), be willing to engage with all sorts of individuals who tell  them what to do on a daily basis --and be cooperative 100% of the time -- I don't - does anyone?

There is such an utter lack of individuality and personalization to this disabled community it is no wonder that individuals on the severe end of the spectrum implode and explode. They have no other way to show that they are really ticked off and tired of being manipulated.  It is kind of an exaggerated "Can  you hear me now?"

I am grateful every day for my ability to communicate by speech or other  means, - and yet frustrated that no one wants to think outside the box, and consider possibilities that veer off the mundane and conservative. Old ideas for a bygone time.

Andrew's beautiful ribbon -  made from shredded and dyed cotton. Choice! yes...

  Does the individual look happy? If they don't look happy - if they are acting up  - chances are like the rest of us - they are not happy.

The key  I believe for teens and adults with autism is to establish by way of observation those activities that individuals with autism "enjoy" on their own, tweak them slightly  to make them less destructive and more productive, and then when this process has been completed, embed these activities in a series of choices. That would to me, signify freedom of choice - an ability for someone who is disabled and nonverbal to exercise their rights to choice.

Society as a whole, is quite a goody two shoes  pompous, and uninformed parade. People with autism "should" do this or that or the other thing. I always say WHY - WHY- WHY - if  I color outside the lines, why can't they? As long as they are hurting no one in their exploration to be human in their own way - why do we feel the need to restrict, control and corral creative spirits?

I am thankful for my hands, my voice, my eyes and my ears, and I relish in the little things. Last night I was captivated by the moon  surrounded and suspended in wisps of clouds, shining like a globe above the yard - I am thankful I am given this choice to view this spectacular show of nature and that no one was calling me, setting off a timer or otherwise telling me I have outstayed my allotted time to head to bed.

I am afraid I would fail again and again if I were to be corralled in that way...

Color outside the box and when you can and if you can let individuals with disabilities do the same...

peace
cate

Papercatz Garden - High summer

I like to document the seasons and the changes they bring to my patch of earth.  We have a large flower garden and a smaller vegetable garden - all organic.

we struggle with the soil as it is not great growing medium, and it needs to be amended and helped along to provide proper nutrients.  This year is our second year with tomatoes and gourds, peppers, and herbs.

The gourds are going great with new babies popping up along the vine every day. Today I spied some new ones in green with yellow tops.  The remainder are a nondescript fall gourd, but I love them nonetheless as they are home grown.

I can sense the seasons more than I even see them... I feel them change. I believe even if you took away a calendar I would know where we are in the seasons by the way the light slants, the bugs hum and the birds fly.

The time of spiders will soon be upon us ... they occupy the zone between late summer and early autumn. It is still warm in the day but the nights cool forming copious amounts of dew on the grass, drenching your shoes even with a simple walk across to the barn.

The spiders will work furiously to form tiny webs everywhere in the grass, I suppose trapping the last of summer's bounty.  Knowing full well what cold lies ahead they seek to gorge themselves on other hapless insects.  Its a bug eat bug world...

From the tiniest of insects the need to survive and the drive to survive is hard wired.

Lopsided benefits - children with disabilities

I am a person, who by my own admission, clings too tightly to those things I love.  It always revolves around people but at times it can be directed at a well loved pet, a  favorite shrub,  a place, a sentimental round about of emotions.

I enter this circle with the unintentional intention of never leaving; clinging to those who impact my life positively and at times people who impact it negatively.  I am in a revolving door of emotions; holding on when I should be letting go; seeing through my own tinted glasses virtues and traits in people that are not there, and when I should be running in the other direction, instead I draw the circle tighter.

When you are raising a child with a disability you are subjected to that revolving door of emotions more than is comfortable or natural. You have caregivers come who lift you up out of some very dark spots; give you a reason to believe or hope things can be better, when you have hit rock bottom, and in my case, I cling to them like a  human life preserver, not relying on my own strength and conviction, but instead  allowing them to direct and drive through the commotion, while I jump in the back seat.

While is is natural and necessary to allow others to take over when you are on this long journey of disability support, it is not in my best interest or any parent's best interests to completely turn over the reins and step back. To do so is to court disaster and emotional disintegration.

I have been guilty of that this past year -  attaching myself like a strip of velcro to the vitality of another; and crossing off  all the negatives in my mind, of where this was going to take me.

I cannot hold onto others with an iron claw grip.  I have to allow my strength and resiliance to rebound.  Yes, allow help, support, respite, but don't give up your captain's hat. You will invariably need to get out the sextant and chart your own course in due time.

If you stay in the crow's nest, keep your eye on the horizon, the curve is less steep, the shock less painful when your "crew" abandons ship.

I say this out loud to myself as much as an affirmation as I can muster today as I figure out how to take back the helm, steer the ship and keep my course.

Two years ago when I started the business for Andrew I started it with a sense of purpose and determination. That has not changed. Though I mourn for what I wished would have been a longer relationship with our support person, I have to accept that this is not the way this ship was charted to sail.

I have to allow the drift and believe I can manage the wheel once again.

cate

When you come to the end of all that you know....

I heard a little quote many years ago when I began the autism journey - little did I know the journey would become as arduous as it has - but the quote went like this...


When you come to the end of all that you know and are about to step out into darkness.... faith is knowing that you will be given something solid to stand on or you will be taught to fly.....

I often think about that when I am faced with those times that any step seems to be the wrong step or any step might pitch me into the precipice of the unknown.. a dark and unfamiliar world that I dread to enter.

The entire autism journey has been that way.. unknowing, unfamiliar, and uncomfortable ... never quite being sure which way to turn or path to take. It has not changed in 16 years and I don't expect it ever will.

Today I learned that Andrew's job coach and supporting team member is leaving.. so sad to see her leave. She has been on the Papercatz team for a year and I had hoped to have her in our lives longer... selfish of me I know ... but I hoped. I wish her well and will always appreciate the goodness she brought to our home.

It is difficult finding new personnel and when people work in your home every day they become more than personnel they become family.   I am sad to see her go, but hope that her future is bright and happy...

Scared... yes and unprepared always for what is next...

cate

Memories of summer

Tonight while cutting the grass and smelling the summer smells - my nose - my brain and my eyes took me back to an earlier day, earlier times, summers of bliss and laziness. Summers of childhood. If only you could bottle that innocence and exuberance and remember to use it wisely, uncork the bottle of youth slowly and savor savor savor.

The sight and smells of newly mown grass brought me back to playing outside until dark, never wanting to come in and coming in exhausted, dirty and sweaty and not really wanting to take a bath or shower, but being forced to succumb to the water and the soap's magic. If you were lucky a snack before bed was a true treat and rare.

There was spotty air conditioning then, not the monster cold machines we have now, and my room had no air conditioner -  just a fan grabbing wisps of a cooler night just outside the window.

I would push my bed under the window (fretting about the unknown things outside in the dark lurking just outside the window's  halo of light).  Monsters? Bad guys? vampires? It would depend on what movies I had watched that week as to what flashbacks I might be entertaining on any given evening.

The wisps of air were often lacking and I tossed and turned looking for those elusive cool spots on the bed, hoping for a reprieve.  This was the era pre sunblock/sunscreen, so I often was sporting a new sunburn on my back, making back sleeping impossible.   Add the factors together, the heat and the sunburn and I am sure there were nights where I was awake more than asleep. Hoping for the tiny wisps of cool air.

This was the era of grin and bear it.   There was no whining "It's too hot."    "I need a drink of water." Those types of pleas in my home went unheard and unanswered. "Don't wake your father - I'll get you a drink" was more the norm --with my mother sneaking in the extra comfort. Dads were tough in those days not coddlers not enablers.

I shot some pictures tonight while enjoying the green grass and cool air of a temperate nite.

Little garden monster - saddleback caterpillar - his sting feels like a lit cigarette! Beware! He got me! 

Sunset - August, 2013 - looks like the Caribbean - but it is not!

Dream your dreams and fly your flights of fancy - you are never too old to dream! 

=

HIGH SUMMER - FLOWERS IN THE BARN

I always like to try to take the time to enjoy each season for all that it brings to my senses.

Fall is my favorite season - the changes in temperature, storms and fast moving skies, quickens my senses and makes me feel more connected to the earth - more influenced by its fury and its strength.

Winter follows close behind fall as a favorite time. I do get tired of the end of winter - those tired late winter days of warmer temperatures, winter desperately trying to fling some snow our way only to find it melting in the atmosphere and raining down on us in the form of slushy, mushy snow/ice.

I like the days of deep winter most - those times when hibernation and the need to nest take on new meaning,  urgency and enjoyment. A cozy blanket, some chips and cheese  and a good movie.  My favorite seasons overall seem to be those seasons with the most change, the most volatility for storms and the need to be sheltered taking haven indoors. I am not of a tropical mind set.

I tolerate summer - threatening to run to Alaska should it continue in the 90's - wondering where in the world I could live where it is cool enough and moderate enough to spare me from this horrible humid heat. It smolders up from the ground in late day.  You can feel it oozing up from the grass at the end of a long, hot, humid day. There is a miniature sauna at my feet, alive with insects, more than I really want to know about or acknowledge live at my feet. I feel especially vulnerable as I tip toe through clover with buzzing bees and flip flops.  My feet are an easy target for a sting or two. I carefully avoid the bees, firstly because I respect them and secondly because the stings not only hurt me, but it kills the bees who are only doing their job of collecting pollen to feed their colonies.

So, I muddle through summer, dreaming of cooler days, waiting for fall...  and taking the time to remind myself to bring in the fresh flowers that abound right now.  The garden is chock full of blooms. Amid the buzzing bees I take  a few. Trying not to disturb their work.

Green fields of soy - there is a hint of a rainbow. 

The secret life of bees and not so secret life of Ripley - July 's bounty

Gardening comes easily for me - having an English father who was ahead of his time with his ability to grow just about anything - and had a huge  English cottage garden long before they came to be known by that name - taught me a tiny bit about gardening I suppose - not that I was interested but I learned by osmosis.

I have a large perennial garden which has been neglected with the heat of these past weeks I cannot get past the heat or the bees to get in it to ferociously weed it.

So it was this evening as I surveyed the damages and plotted to clean it up I spotted two bees asleep in the flowers. Who knew they sleep in flowers? Didn't common knowledge tell us they go back to the safety of the hive at night? Apparently they did not get the memo...

I think if they caught too far from the hive as evening approaches they hunker down and stay put.

A baby and a full grown bee were side by side waiting it out - little survivors I guess - outwitting mother nature.

In the background of course is Ripley  - whose battery for his electric fence has died (thank the stars one arrives in the mail tomorrow). I have been watching him like a hawk. He is intent on a reign of destruction and I am intent on having it NOT happen.

So another day closes and with it the garden goes to sleep - (I will dream about weeds growing in my sleep).

Pink cone flowers

perennial sunflowers

Paris the silkie hen - she cannot see a thing!

shasta daisies purple cone flowers

RIPLEY THE LAWN WRECKER

Brown eyed susan

evening glow in the barn