A Prison of Hope

"I cannot be an optimist but I am a prisoner of hope." — Cornel West

The other day I came across this quote and it totally summed up my feelings about - well almost everything related to autism and The Boy's diagnosis.  

I cannot be optimistic when I have to fight for services that The Boy needs.

 
I cannot be optimistic when District Officials have told me "It doesn't matter how much services you bombard him with, you still may not get the outcome you want."

I cannot be optimistic when after applying to eight schools - the only school that accepted him, costs $93,000 a year.  


I cannot be optimistic about the state of the special education system when there are budget cuts and schools that are without occupational, physical and speech therapists.     

I cannot be optimistic when I hear about center based service providers closing their programs due to lack of funding.  

I cannot be optimistic when I ask coordinators, social workers, teachers, service providers, district officials questions and the answer that I hear is usually "I don't know."

How can I be optimistic about a system - a government - that is failing our children & growing population of adults living with autism?

  

Yet I continue to hope.  I am held captive by it.  Because I write letters and petitions.  I make phone calls and attend meetings.  And I write about our world.  Always hoping against hope.  

I associate with "prisoner of hope" not because I consider my life with The Boy a prison.  But because our world, at times, is a lonely place where time passes slowly.  And every day there is uncertainty.  Because nothing is guaranteed.  Because our lives seem disconnected from everyone else's.  And all the things I cannot be optimistic about, confine me.  Worry and concern are constant.  Still hope is always present.  Hope sustains me.  Hope can exist within the pessimist. While it's difficult to be optimistic about the world in which we live, I continue to hope for the best for The Boy. 

More often than not, The Boy will do something, say something that I haven't seen or heard before. Something that will put every challenge in perspective.  Something that will make me pause and savor the moment.  Moments that bring tears to my eyes and thank the God that I tend not to believe in, because I know how much work it took to master a task that comes so easily to his peers.  


And every so often I will talk to someone who provides me with the answers I seek or refers me to a program.  Every so often I will see something or read something about a person or community making an impact.  Someone who challenges the system, who takes matters into their own hands.  And I am provided with a temporary release.  A parole from my prison.  And I think, maybe there is hope beyond the walls of our world.