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


No comments:

Post a Comment