Thursday, April 24, 2014

The joys of doing nothing - Autism - overscheduling and the need to let go...

When Andrew was 3 years old and newly diagnosed - my sole purpose was to find the "cure" the fix or at the very least the path to progress... I had no idea what the progress would look like..what form it would take...or how I would accomplish this ... I just knew I had to try  ...the "what" of this process and the "who" of the process I did not clearly understand - it was foggy, at times indiscernible and the pathway often meandered of--imaginary steep cliffs, rapids, swamps and quicksand made the journey fraught with distress ... frustrating, and horrifying for a mother trying so desperately to put herself and her son on this path to progress. Lack of staff, lack of understanding, lack of curriculum were our virtual roadblocks.

I never had a vision of what the end of this body of work would look like.. I never envisioned my son "cured" or as they say in the autism community "recovered." I saw only work, a curious ambition, a job and a journey.

Mercifully for many parents, your mind is so cluttered with the now that the future has to take care of itself since there is no energy left for that which is not directly in front of you on any given minute, hour or day.

And so we proceeded - researching websites, scholarly articles,  research journals and the like - looking at studies, scrutinizing the outcomes and trying an eenie, meenie, miny mo mentality to choose the correct path for our child.  I had no idea what to do  - only a vision of something better.

We worked within the ABA framework for many years -  totalling 17 years this present year... we worked for consistency, we worked for language, we worked for behavioral excesses, and we worked to work ...never daunting, never giving one inch to autism...some days putting in 14 hour days just to get by. Never letting our guard down, never forgetting the "principles" and in the end being somewhat tormented by the very principles we had looked to for guidance and deliverance.

I had no idea where I was going - how I would get there - or what would be the final product... would autism win this war - were we simply putting out fires and winning small skirmishes - or were we in fact pushing autism back over the border and letting" normal" invade enemy territory?

The answer was not simple, nor was it to be forthcoming quickly or succinctly - instead it was delivered in a series of events - deviations from the path - muddy meanderings from our path into  the jungles and mountains of all that autism is/has and can throw into a human's path toward success.

I could not see or foresee the future and so we plunged into the depths of this confrontation and gave it all we had from age 3 to the present almost 20 - 17 years... the question remains ...did we win? did we acquiesce to autism? The answer is not simple or clear.

What I believe we accomplished - now clearly  seeing in retrospective lenses - was holding the enemy at bay - sometimes losing skirmishes - gaining some ground - only to lose it again - and also succumbing to the reality that for many individuals with autism "recovery" is not possible.

Acceptance, resilience and clarity becomes tangible and comprehensible only after many years of battle. To digest all that you must endure, all that your child must endure is too much of a smorgasboard to swallow early in the journey. Instead you taste from entrees and appetizers  all preparing you for the eventual outcome.

We have landed... I can say after 17 years we have arrived at the place of convergence of all roads we had jogged, walked and trotted along the only map we were given.

We have not won, but we have survived ...sometimes that has to be enough.  The goal now is not to fill Andrew's day with scheduled activities that overwhelm  but to tune in further to what he might be trying to tell us.. to tune in to his moods, his attempts at communication and to honor where he is now and not be disappointed that the journey did not take us to where we had originally hoped.

We learned many bitter and happy lessons along the way - we appreciate Andrew's simplicity, enjoy his quirks and reflect on those things that appear to make him happy - we don't rush him along the path anymore to the next scheduled activity - we allow and approve and support cloud watching, sillly jumping and wind appreciation... there is no place he needs to be, and there is no rush any more to take him to places he was never meant to go.

Being present in the moment is our new way of being..accepting...coping and bouncing back.  We don't know where the road will take us next, but the next segment of this journey will be less circumscribed, more loosely formulated and will have no time table... Enjoy each day, accept each stepping stone, and be  happy in the present.

April is autism awareness month and I felt it would be fitting to give thanks to where we have been, the professionals who have helped us along the way and the soul of the journey, Andrew.


Sunday, April 20, 2014

REPURPOSED LIVES - happy resurrection

I spent this past weekend and the weekend before repuposing aluminum containers - giving them new life as flower holders, plant containers and just fun useable "green ware" for your pencils your kitchen or wherever you want to splash around a little bit of your own personality and pizzazz.

Lots of work but in the end I am happy with their little joyful images. Made me smile...

Penny, Paris & Peabody survived the long winter and are so happy to be outside again! 

Thursday, April 10, 2014


Should society offer its citizens warning labels- cautionary tales - adverse reaction symbols? Have we as a society become indifferent to the plight of our fellow members? Has our ability to live life peacefully been compromised in a fashion that we can never recover  peaceful and more gentler times?

I often ask myself if technology has been a boon or a bane of our existence... have we created "monsters" of technology, unwitting victims to the unrelenting videos, violence,  and disruptions of kindness. Have we exposed our more friable, impressive minds with so much input, 24  hour technological interference  and bombardment that we are creating a subset of individuals bent on destruction - their own and others.

Have we replaced parenting with technology? I believe in many cases... yes. One only has to glance around in the supermarket, toddlers crying in their strollers while mom gabs on  her cell - chatting amiably while tears run down baby's face.

Teens sit in the back seat texting while mom gabs on her blue tooth. Dad meanwhile outfits offspring with their own tablets for mindless game playing while he surfs emails, sports or internet.   No one is connecting to the person they are physically with,  but instead removing themselves from their geographical location to chat with someone miles away.  We are together but apart even when we are together.  Make sense?  No one is with the person they are with - but instead we are  living in parallel universes - chatting with people not present, while we are present with a real person... makes me crazy....

I am not a TV purist, or an anti information guru determined to suppress or withhold information from the public, in fact quite the opposite - I believe truthful information is powerful and empowering and has helped move our country forward.

What personally makes me cringe and actually panic is the TV/video/media feeds that I am exposed to quite involuntarily  and unexpectedly that throw my mind into revolt and disdain and actual anxiety.  I find it harder and harder and harder to extricate myself from the constant barrage of information, wanted or unwanted - it is there at your fingertips. Forcing you to pay attention - like an alien being taking over your thoughts, you find your eyes flicking back and forth between stimuli.

I have experienced recently the onset of media in my face at the supermarket flashing ads, recipes, information, commercial advertisement while I am forced to wait in line. I actually used to prefer standing quietly in line, just letting my mind wander, checking out the candy selections or the woman in front of me who was wearing very cool sandals.. but now I cannot avoid the input. I cannot turn it off.

At a diner    not long ago I found myself sitting at a booth with a media player on full display, blasting away a variety of tasteless stuff - flicking, flipping to scene after scene, much of it not appropriate for younger patrons. If I were a parent with young children I would have covered the indecency with a napkin.

I found it taking my attention from my friend - constantly pulling me in to look at its mindless ramblings and flashes. Annoying, intrusive and abusive.

I wonder - based on the events of these last few years - the shootings,  and now senseless stabbings at our schools - is it too much? Is it  too pervasive a force that is turning minds that may be impressionable and fragile into rage filled killers and machines bent on destruction.  WHY I keep asking. WHY?

I was working this weekend and had  flipped to an animal channel - National Geographic - safe I thought, pleasant... I looked up to see a cougar headed straight into the bucolic scene of a mother moose caring for her recently born calf... I did not have to finish the scene to know it ended badly and horribly... I could not switch the channel fast enough.

How do we know what this constant death and violence does to young brains?  How can children watch, what seems to be a lovely wildlife feature - only to find that in mere seconds - a cougar has a baby moose in its jaws killing it violently and in great detail for the children to digest.

The problem as I see it is that they cannot digest it. They cannot decipher it and it is disturbing to them.  Combine that with violent video games, and the rest of the mindless chatter we are subjected to daily and I believe it is not in any fashion providing stability to our teens and younger.

I find it so disturbing to watch TV myself I cannot even fathom young children watching  anything without violence now. It's rampant and overwhelming, and I cannot help but wonder how it affects the level of violence we continue to experience.

I brace for impact every day and I watch all things visual with a certain degree of trepidation and with a remote clutched in my hand ready for a quick switch... Sadly we are not offfered to OPTION OUT of the barrage. No, I don't want a table with a media flat screen, NO I don't want to watch this ad while I check out. I want to connect with the REAL world, REAL people and sadly I believe some of these young kids acting out in violence did not have enough of REAL  parenting, REAL people in their lives. .


Wednesday, April 2, 2014


Recently I had the opportunity to work on a black and white wedding - and for some reason the simplicity of black and white really appealed to me.

And so it comes to be that my shop is full of the color of the moment - right after this I am moving to hot pink and tangerine-- quite a difference - and I am ready. Though I loved making the flowers - I am always happen to move on to new colors.

And so it goes as this order goes to its intended bride - new colors will  visit the barn and just in time for spring!