Monday, December 3, 2012

When you come to the end of all that you know....

When you come to the end of all that you know and are about to step off into darkness, FAITH is knowing that you will be given something solid to stand or or you will be taught to fly.........

Letting go is not giving up, changing course is not withdrawing from the fight,  and reinventing the dream is not losing sight of your path.

I say that as much outloud to bolster myself as I would to another parent fighting the relentless fight we fight to keep our son engaged-productive-happy-safe.  At the same time we keep ourselves engaged in the process and try to follow our own advice to be safe, happy and engaged. Not necessarily in the same order!

The battle rages on so many sides that it is often hard to tell the enemies from the good guys and the goals and hopes often get lost in the trenches of the on-the-ground warfare that is waged with all sorts of agencies and providers. The fighting is fierce, and the casualty rates are high.  No one wins when no one listens or cares, and we have found apathy and callousness a major part of our dilemma in working with some individuals who would offer themselves as "experts."

I have learned, not without pain, that providers do not always live up to their name and essentially provide NOTHING. Can one call oneself a "provider" without providing something? But then again the definition of  "providing" is so loosely constructed that one cannot always tell if just showing up is  considered a provision of some sort... not sure about that ...

I recently attended a school meeting wherein I asked about their "providing of services to my son" - he was without educational services for 11 days - their definition of providing services was "showing up" though no services were rendered, they were not even in the same location as my son, and they did not make any contact with him.  What mom or dad sends their child to school with the expectation of their son or daughter never even seeing their teacher or any teacher? When one has autism apparently that can be the "new norm."

So, for those of you who might think "providing" means supporting or guiding or supplying something  - in new age educationalspeak - it may mean something totally different.  I learn something new every single day.

I believe that is a good thing, learning that is.

I attempt to face each road block with determination, not for myself, but for my son who is voiceless in this abyss.  It gives me strength, determination and sometimes anger to see anyone who would deny services to my son or ANY CHILD who might need them in such a callous manner.

But then I always thank andrew for showing me and continuing to show me how to manage to go on...what motivates him, what is meaningful for him.. and I listen and I learn and I am blessed to have some small options.

We have found a peace of sorts, our own peaceful spot in our creative studio. There he thrives, laughs and engages. He tells us by his smiles that we are on the right track... and so we are now the followers and he is our leader....


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