Please know that I am a poet and a scientist...so how I deal with discomfort is I ask questions, I manipulate words and rhythms and I dance around issues that I feel strongly about. When I use the word dance, please know that I am no ballerina...I prefer sharp, awkward maneuvers that express my passion. So when I dance around issues, there is no guessing how I feel about them...take nothing personal but please take action.
My son or daughter, first of all, were not given the choice to be gifted with such a monumental task as to maneuver thru the wells and floods of autism. True, they are blessings. True, they have taught me to be grateful, present and to return to my inner strength. I agree, all of these feats are important, but could we please get less learning and more help???!!!! From somewhere? Could one of the following agencies step up: the EPA, FDA, NIH, AMA, Autism Speaks, the oil industry, Monsanto, big pharma, social services, schools and the general public??
What have we done or not done to deserve the total chaos that we inherited, not genetically, but chemically...medically...and the inherently obvious statement, 'that we have not CHOSEN: Autism.' Where are the choices? The hoopless supports? The easy buttons? The wrap-around, behaviourally-modified and modestly-supplemental supports so many have promised at the very least? Here we sit in poverty, stress and distress waiting for the delivery of the services and lifestyle that we have been guaranteed by law, and we have fought for via avenues we paved with our own bones...to no avail. To end up better for the work we put in, further than any pre-paved trail could have brought us, and more adept than those who have been embedded in 'research-based' models for years, and still be offered the same or less than when we started due to bureaucratic backsliding and slippery sliding scales is, well, unspeakable.
Deregulation has defined our dilemma and I am D. O. N. E. done.
Step up please...any expert who has a remotely intelligent answer. A someone who is willing to point a finger or file a complaint, sign a petition, lobby a legislator or even read the laws they obey. Anyone with a loophole for surviving autism adventures. Anyone? Anyone? Unlike Ferris, I have no days off, paid vacation, sick pay, or insurance plan. I am the 'unpaid help' DSHS uses to cover their budget cuts - which we so graciously allowed our house to pass...unnoticed. But we are used to this status....unnoticed that is, except of course when we are inconvenient. Then we are simply put away...like we are now. Like those in pastures, whose worth has been deemed 'less than' in some way, by some one. What are we worth to you?
My goal when starting this project was to expand the adventures so more like us would have support due to more, who possess the easy buttons ( and trust me, even those who have difficult buttons are very far from navigating the complexity of our daily adventures)...those who can press a button, get out of their car, go inside and ask their kids how their day was and even have the luxury of being ignored...those people who we've opened our world up for...we want you to ask tough questions about corporate medicine, to pick up phone and call your senator, to push the donate button, volunteer, have coffee with a parent (like me for example) and offer an easy button...to someone. JUST ONE moment of easy. If not us, then who? If what we do, hasn't stirred some action then I ask you, "What will? And will it actually have to come to whatever your answer was?"
Feelin' Guru V...the goal...for everyone to feel groovie. Well, frankly, I am finding groovie less and less these days and grouchy is more the feeling. I am feeling less in love and more imprisoned. So far, the resentment is for some massive gravitational force, named establishment. The more I am squeezed, pulled and ignored, the more I dig in deep. Into a place that is dark with sinister disgust for fear, compliance and greed. My shadow is inquisitive and I refuse to accept these "Sofie's Choices" laying down. I pray it doesn't come to that.
Answers, choices and an ounce of easy. Am I really asking for the impossible or simply the implausible? Rise up and Slam for a Solution. Slam this ridiculous model of isolation we have endured far too much of. Slam open our door and visit at the very least. I am lonely...and so are my kids.
Sincerely, not so Zen, but so Zen Jen and her gurus