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.


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