Sunday, August 25, 2013

Life cycles on our mini farm

Our two hens Penny and Paris have taken to roosting and trying to hatch infertile eggs. Our rooster died a month of so ago, so there is no doubt these are chickless eggs.

I recently acquired some fertilized eggs from a chicken friend and they are now sitting on possible real live chicks. My first hatchlings! Maybe I hope. I pray the experiment does not go amuck. I wait with much anticipation.

So we candled the eggs the other day and there were veins throughout - my chicken friend told me this was a great sign. So the girls continue to sit. We are almost 10 days in with about 11 more to go.  3 weeks for a chicken to become a chicken.

We started on the 17th!

Paris is the buff/blondie.

Penny is the black hen - she is cranky now when I bother her!Eggs to tend


Friday, August 23, 2013

Skipping stones -

Skipping stones - that analogy and vision floated through my mind this morning as I thought  how to describe my life at times - and my interpersonal connections - skipping stones -  living life with an individual with autism or ANY disability - geriatric - pediatric - we skip stones daily, hourly and sometimes by the minute.

We are often told by professionals about our loved ones as IF we don't live with them and observe them every day. I have taken to skipping stones with these persons as well.  They leave and my life resumes without a ripple. Easier to skip stones then to dive deep. It's never worth it and never results in anything positive anyway.  Everyone knows your loved one better than you do and everyone has an opinion. But in the end the only opinion that matters is your own, and the only one left standing holding this basket of skipped stones is you. The basket gets heavy as you are unable to find a safe haven to unload it.

I put the stone skipping on different levels.

Talking to professionals  - skipping stones - waiting until they are finished so that you may resume your life.  They may mean well, but you know your life - you live it 24/7.

Acquaintances - friends - skipping stones - flying over the water - barely touching down - no one really wants to know the intimate details of your crazy life.

You become adept at skipping stones - skip stones for almost everyone - except a few chosen people  - this list grows shorter each year.

You look for kindred spirits who understand -  they  will allow you to dive into the depths - they will even dive with you,  but they are few and some are short lived as you tend (unintentionally) to burn out all but the most trusted friendships.

So you skip stones - hello - how  are you to the guy at the post office - just great you say - first stone of the day skipped successfully without a ripple on the water.

The day proceeds on much in the same fashion.

It is the way it is. It should be better - deeper - more meaningful - isn't life supposed to be meaningful  and conversation cathartic?  

You learn to drop your skipped stones into your basket at the end of  the day readying them for the next day and the next. The basket gets heavy but you continue on.  Perhaps you may never meet a person to share your basket, but you keep trying, because that is what you need to do.

I  keep a sharp eye out for stone skippers - someone in my secret club - we carefully unload our baskets together, and as they empty and stones pile up we feel a sense of freedom and release.

To all my fellow stone skippers-- I salute you for your bravery and I hope to meet you in my travels...



Wednesday, August 21, 2013

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...


Tuesday, August 13, 2013

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.

Tuesday, August 6, 2013

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.


Monday, August 5, 2013

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...