Saturday, February 9, 2013

Faith - when you will be given wings to fly

Faith is knowing that when you come to the end of all that you know and are about to step off into darkness - you will either be given wings to fly or something solid to stand on.

When Andrew was first diagnosed with autism at age 3  my only focus was how to "get him better."  Better than what I did not know, only better from what the feared unknown future would hold. I did not want to know too much for fear that  in knowing all of the journey and all of the pitfalls I would not be fearless but fearful.  This fear might stop me, waylay me or inhibit me from trying my hardest, working to my fullest.  Statistics and prognosis were not theories I entertained or investigated. Occasionally I would accidentally allow my eyes to wander over an article wherein statistics for children like mine were pigeonholed and trotted out with the "outcomes."  I hated the "outcome" word.  Best outcomes, worst outcomes, statistics of those who gained language and those who did not.

We were tagged with the word "moderate" - moderate made me feel hopeful. He could slide either way up the scale couldn't he? He could slide right into mild or maybe slide the dreaded other way into severe. But at age 3 who knew? Who wanted to know. To know was counterproductive. We would work for mild...... and we did.

We did not end up there ... we did not... we ended up sliding in  the other direction, despite the years of work and determination ....we ended up severe and nonverbal... the worst "outcome" that dreaded word.

And so it goes and continues to go.. at age 18 the challenges pile up before us. We push one out of the way only to find a new one. A friend of mine calls it "whack a mole." When one challenge is tackled a new one pushes to the surface. When you find a way to adhere to a schedule, an obsessive behavior creeps in that wreaks havoc on the schedule.

In 2009  our little on line business was started and for Andrew and for us it has been a tiny beacon of light as we maneuver through the chaos of a diagnosis without a roadmap or treatment.  He enjoys working in this business and no matter how chaotic the day, we trek to the barn studio behind the house and we have productive time and happy time. It is the only part of the day that is predictable.

We enter 2013 with hope and with determination - full of anticipation for new projects, meeting new customers and making new connections, and with the hope that our little shop will continue to support Andrew and keep him safe from autism's ongoing ravages on his nervous system.

We hope to add a new shop member part time - another young man with autism, who will help us get mailings ready and prepare paper products for assembly or shipping...

And so the journey goes... onward sometimes upward, sometimes sideward,  but always with hope and faith...



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