Tuesday, July 10, 2012

Living the "inside" life OR coloring within the lines in an outside the lines world

Having dedicated this blog to autism, autism endeavors, creating a business for a teen with autism where few have dared to tread before, I would be remiss if I did not, from time to time, comment on those areas of life with a teen or adult with autism that sets our lives apart from the "color outside the lines" world that we all live in.

I realize more and more as Andrew turns 18 and looking beyond that (if I dare) that life with autism becomes, at least for our family, MORE reclusive not less, and that being able to live an "outside" life is a lofty and often unattainable goal.  What does an "outside" life look like? Well it looks the same as a "color outside the lines life."

Let me explain... living the autistic life or la vida loca entails many details and planning maneuvers that the typical population would not even dream of (unless they had infant triplets or quadruplets under 1 year of age) and even then it pales in comparison.  Coloring outside the lines and for those who do so to me means a life where an event can be planned in an hour, where a day trip is decided upon at breakfast, and a late night bonfire on the beach is not out the realm of reality. Actually sitting down in front of a bonfire would be a wish just in and of itself. Were andrew to be with us, it would not be feasible or desirable. Unless running down the beach is part of the "fun" of the event. (Did I mention running down the beach in the dark?)

Can we attend an event? Will it be noisy/crowded/hot/far from home/of a long duration? Usually the answer is NO. 

Can we attend as a family an event, birthday, anniversary, barbecue - the answer also is resoundingly "no" there is no one willing, eager or available to stay with an 18 year old 3 year old who has behaviors that challenge, on any given day,  your patience, resolve and endurance. 

And so without realizing it your "outside" life becomes an "inside life" living within the restrictions, gates, fences (imaginary or real ) that you are forced to construct to support the life that you have devoted yourself to defend and support, albeit unintentionally and without forethought.

It is a shoot from the hip world, spontaneity has been shelved along with inconsistency or free spirited activities. Activities must be planned, orchestrated, planned again, double checked and then even then with all this planning, oftentimes events run amuck. Respite workers don't show, come late or have other intefering plans, (afterall they are from the "color outside the lines" world where the same rules don't apply.

I am not angry or bitter about leading this "inside" life but there are days that I truly would like just a bite, a nibble at the "outside the lines world" even if only for a day - that world where spontaneity rules, and consistency is thrown to the wind.

Having said all of this - it now is time for me to prepare activities for andrew's day and to once again engage in the rules of my "inside" life - I chuckle at Cesar Milan's (dog whisperer) admonitions to each client when working with their unruly pet  - "no touch, no talk, no eye contact" that is often the mantra of my day...

A sense of  humor helps a lot and a sense of a bigger purpose buoys me on the tough days. I am thankful  for my stubborn tenacious nature, it has served me well these last years.

My next blog posting will return to life in the shop! but I digressed to   share the lifestyle of the family truly living with severe autism.


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