Saturday, December 21, 2013

Counting stars - living the live you have

I was recently speaking to a friend who relayed to me a story about a young man stricken with a brain tumor - whose subsequent surgery has left him essentially unable to speak, walk properly or engage in those activities he was fully accustomed to doing  as a young man of 27.  She relayed how the family was upset and understandably worried and distraught at his lack of ability to be "who he used to be."

I believe that living the life that I do - with a son who is severely disabled by autism - leads me to see this young man's situation and life in general in a different light.  I see the optimism versus the pessimism and I see a life worth living and worth fighting for even if he never returns to his former function. I see a blessing of him surviving 5 surgeries, infection and numerous set backs. I see a warrior and a survivor and someone I truly admire and would encourage to fight on.

I understand how his family feels --they have "lost" who they knew - they have had to replace their fully functional and independent son and brother with a facsimile of his former self and they are undeniably and understandably upset and discouraged.

Living the life I have has led me to counting stars  - I count blessings in the every day hurdles accomplished - in hours, minutes and seconds - I count stars for what I have not what I wish I had or would like to have had.   I count stars every day for the simplest things. A beautiful sunset stopped me in my car yesterday evening, breathtaking and blessed - mother nature sending us messages that I hope we take note of.

We rush - stumble and race through life forgetting to count the stars - a dog's funny antics - a kitten tumbling with its mouse toy, a  time of peaceful thoughtfulness, lunch with a friend, a baby's first smile - so many things.

I feel so blessed to have met my son and to have him in my life. He has taught me to count stars every day not for what I wish I had , but for what I have...



Thursday, December 19, 2013

Fast and furious - No rules autism

Growing in knowledge with an individual with autism is a never ending, changing set of dynamics. Treating and caring for an adult with autism is an even more challenging set of rules for which you have never been shown the rule book.  To navigate you wing it - fly by the seat of your pants - and careen around uneven corners of guessing. The compass is missing the navigational parts and you spend a lot of time hoping your hunches will pan out.

When we started this journey Andrew was 3 years old.  Like  a computer hard drive mother nature/genetics had forgotten to hardwire his brain with typical human essential information.    He came without a manual, or instructions.

Simple baby games did not happen for him, and tasks inherent (one would think) to all young toddlers were no in his repertoire. Clap hands became a lesson, waving bye bye became a lesson, touch your nose or your toes became a lesson.

We piled in the learning as fast as his brain would retain it and some things have stuck to this day, though not enough growth has emerged from these hard won lessons to withstand the test of time

As Oprah would say "What I know" is that I know autism is complex, taxing, physically and emotional challenging for caregivers and destined to defy expectations or plans.  No one knows what to tell you or how to repair or regenerate those areas of the brain that remain defective and damaged.

We find as we enter the young adult years - the demands become more challenging, the behaviors more complex and the answers even harder to find.  New behaviors crop up daily, weekly, hourly and we rise to the challenge as best we can with suppositions and logical (we hope) responses to behaviors we cannot understand.

Why is it so difficult for him to transition from one surface to another - stopping as if there is an invisible barrier between wood floor and tile. We don't know, we simply hope to move him past this unseen obstacle.

We move forward at a snail's place, but forward is always our goal.

We are never totally defeated but we are totally challenged. However, we rejoice in his presence in our life and as Tiny Tim said in A Christmas Carol - God Bless us everyone!

merry holidays