Thursday, March 8, 2012

Sometimes Things Fall Apart...

"Sometimes things fall apart so better things can fall together."
(not sure if this is the exact quote or who even said it.)

The other day one of my FB friends posted this quote or something similar (I can't remember exactly) as their status update.  And well, I certainly hope this is the case.  Because lately things seem to be falling apart.

There is so much uncertainty lately.  Well, if I'm going to be completely honest - there's been uncertainty since The Boy's first day of kindergarten.  I remember this time last year, feeling tangled in red tape, overwhelmed and unsure as to what would happen in September.   

And so much has happened this school year.  Things I cannot write about.  But I will say this.  It's been incredibly disappointing.  And frustrating.

And while The Boy has come so far since September and I'm please with his progress.  I'm still at a complete loss. 

And I have raised questions and concerns that go ignored and unanswered.

And I have become cynical.  And I have lost both faith and respect in the New York Board of Special Education. 

And that's unfortunate because I wanted so hard to believe that ultimately - people will do right thing by a child with special needs. 

And bottom line.  More often than not.  They don't. 

Children are no longer children but a number in a broken system.         

And then last week - I stood in the rain for an hour.  Waiting for The Boy.  With The Boy's ABA therapist (that I pay for privately).  Needless to say, The Boy lost an hour of therapy. 

And when I called the school bus matrons, I was told that 2 more children were added to the route. 

And I could hear The Boy in the background - his high pitched perseverating speech.  And I knew he was confused.  Nervous.  Unsure of what was happening because The Boy memorizes routes.

The Boy is put on the bus at 2:20 pm (I think this is the time.  Though when I called The Boy's school to confirm, no one seemed to know.  But they did tell me, the bus is often late.  But that's for another post...)  And he didn't get home until 4:45 pm.  That means my 6 year old autistic child was on a school bus for 2 hours and 25 minutes.  And the matrons told me that 4:30 - 4:45 would be his new drop off time.

And I'm supposed to shut up and be okay with it?  Oh Hell Motha Effin NO! 

The school is less than 6 miles away.  He just turned 6.  He's autistic.  He has a 6 hour school day and over 4 hours in commuting each way.  I'm sorry, I don't want to be on a bus for more than an hour - let alone 2! 

So I wrote a letter to the person in charge of Office Pupil Transportation (OPT). 

And I may have cc'd the Borough President.  And um...The Chancellor.  (Because you know, me & Dennis are cool like that.)

They are working on it and The Boy has been getting home a few minutes earlier every day.

And you know what the OPT dude had the nerve to say that it wasn't necessary for me to cc those folks. 

Well...I beg to differ.  I will cc whoever it takes.  I will call and write whoever I need.  And I will do whatever it takes.  To make sure that The Boy's needs are being met.  That he has the appropriate services he needs.  That is my job.

And even when the NY Board of Ed & OPT don't do their jobs - that's fine.  I will continue to do mine.

So let things continue to fall apart.  Mama's putting it back together. 

(, this post is kind of all over the place.  But I have lots going on and my mind if sort of all over the place too.)         


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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.