According to my calculations…

A new phrase is prevalent in our world of late and it’s bringing to mind a series of complex questions.  Very recently while attending a lengthy information session, the concept of advocacy was discussed.  In fact, the way it was addressed prompted me to question the very definition of the word and ponder how it has somehow become a parent’s duty to take on this role within a multitude of complex systems ironically at least on paper created to do that very thing on behalf of children with A.D.H.D and many other complex conditions.  The irony is not lost on me, I assure you.  I’m just not willing to accept it is solely my ‘job’ to advocate for my child.  Where is the accountability when professionals who are paid to do so and simply DON’T??

Let’s break it down into literal components… I actually looked up an official definition of the word advocate.  It is defined in part as a verb meaning “To speak, write, or stand up for something or someone” “An example of an advocate is a parent fighting for special education services for her child” ..  Source  “www.yourdictionary.com”

No really, I’m not making up the example…it is there.  Way to close to my own experiences.  I’m actually the definition of an advocate.  Wow.  OK, so here’s the question…why am I still struggling to get my son the education and mental health services he so rightly deserves?  I’ve done my research, stayed calm during countless meetings, exhausted local options for support and even taken my lovely boy to another community for specialized medical help. So why isn’t it working?? What do you do when the advocate needs an advocate??

I’ve come to the conclusion that at least in my ‘neck of the woods’  several key ‘systems’ are completely fragmented, convoluted, complex, overly political and even in some cases discriminatory toward children with ‘invisible’ challenges.  (Clearly, not actually meeting the needs of children who need help the most). Overly exhausted parents are already advocating for their children within multiple systems..it’s incredible how much red tape exists in order to even attempt to access help within the education and mental health arenas…high effort, little results…thus far.

Let’s be real, to have already spent countless hours attending numerous meetings with little tangible progress is akin to being a hamster stuck on his wheel, spinning repeatedly without actually getting anywhere.  It’s also incredibly ironic that within so many differing systems exist criteria meant, in theory, to help children who need it, but in fact at times actually further isolate, compartmentalize, complicate and even prevent that crucial help from materializing.

How is it possible that parents like me are feeling they are in some way expected to magically mend broken education and mental health systems for their children?  Why are persons in positions of power often quick to shift these responsibilities back to parents? Where is the accountability when persons are not meeting the needs of children who  need help the most?

These are among many questions robbing me of sleep each night.  It’s become clear a shift in focus is needed..my energy is better spent fighting for accountability and positive changes within these complex systems rather than unconsciously taking ownership of problems clearly in existence many years before my child was even born.

I don’t need anyone to tell me to be an advocate for my child.  It’s a no-brainer, and has become my identity long ago.  What I need is to connect with those who will stand beside me and will advocate with me to fight for necessary changes within outdated, overly political systems.  My lovely little fellow has had a funny phrase stuck in his head lately… remember in my first post how I wrote about him repeating phrases?  Lately many sentences begin with “According to my calculations…”  Well tonight I’m borrowing it and saying once and for all according to my calculations, people need to stop shifting focus back to parents who would appreciate genuine help the most, stop hiding behind made up criteria/politics and accept that key systems are in need of a serious overhaul.

To me, advocacy is not only a parent’s job.  When it works as it should, it also involves a team of other people from multiple professions united by a common goal: standing up for the rights of all children.   To those of you who have this team, my hat’s off to you…as for the rest of us, we are still fighting. I hope one day soon we won’t have to.