Monday, March 14, 2011

Tangeled in Red Tape

I feel like I'm having a Lifetime Movie moment (not that I've ever seen a Lifetime Movie) when absolutely everything goes wrong for the heroine and all seems bleak but you know that it's all going to be okay, you just don't know how all the crap is going to work itself out.  Except I'm (a) not a heroine and (b) I'm not so sure things will work out.  That's where I am.

Because so far, March sort of sucks.

We're still in Turning 5 limbo - thanks DOE for canceling our meeting at the last possible second.  No explanation.  No reschedule date.  All we can do is wait for their call.  

We're still looking for an attorney - though we've narrowed down our very few options.  Thank goodness for 401k loans.  Because yes, it's getting to that.

We have one school acceptance so far.  And I'd say "Hooray" - except that the yearly tuition is our annual income and I'll need to sue the DOE every single year that The Boy is there for tuition reimbursement.  It's much more appropriate than the public school District 75 options but completely unaffordable for any average person.   The financial burden is overwhelming.  (Let's not even discuss the guilt that goes with this.)

We've had one school rejection so far.  Ouch!

We're still anxiously awaiting for the school of our dreams - the private Board of Ed approved school.  I'll dare not speak of it any further.      

We've just had another SEIT "break up" with us via text message.  I like to use the term "break up," because they always use the same excuse "It's not you, it's me." Blah, blah, blah.  So tomorrow we'll start with a new SEIT. It will be The Boy's 5th home based therapist since January.  News flash: The Boy needs consistency!

But I'm especially disappointed, because this last SEIT was an ABA SEIT.  And when this woman called me  - I cried.  I said, "Are you serious?  Do you know how long we've been waiting for you?!"  (I had been told by the District that ABA SEITs do not exist.) And after she came to our apartment and agreed to take our case, I threw my arms around her.  That was last Wednesday.  Today I got the break up text.  Rejection sucks.  Especially when it's over something lame like street parking and Cross Bronx traffic.

I had begged this woman to take our case, I cried - in front of her.  Now for those that know me, know I'm a cry baby.  I will cry over a cell phone provider commercial. But for me to cry in front of a stranger - someone who has control over what The Boy needs - takes a lot.  Nothing makes a mother more vulnerable than not being able to provide something your child needs.  

Not wants.  NEEDS.  The Boy needs these services.  And if it were up to me, if I had the financial means, I would not go through these hoops.  I would not be tangled in red tape.  I would not have to justify and advocate for the appropriate services.  Strangers and bureaucratic agencies would not have a say over what The Boy needs.

The Boy is active, a rough and tumble scruffy boy who loves to run, jump and hop.  His shoes are often scuffed, dusty with dirt.  But when he needs new shoes, I buy them.  Because I know he needs them.  There are no scheduled meetings.  No reports to read over.  No justification.  No discussions about whether or not he really needs the shoes.  No doctor notes required.  Because when The Boy needs new shoes - it's pretty obvious.

And since The Boy has an autism diagnosis.  Since The Boy has a significant delay. Services should be the same way.  The need is obvious. It should not have to be so hard to get them.              


  1. Oh. I feel your pain. Hugs to you.

  2. sorry to hear that you're going through a rough time. It was very lame and unprofessional to walk away from you and your son after she gave her word she would be there and to do it by text unreal. Parking as an excuse? It goes deeper than that I think but whatever you need someone who will help you get the help your child needs this is not fair to your son. You try to be professional hold ppl accountable and you still deal with stupidity. I hope things work out for you and you will find someone truly committed to getting your son the help he needs

  3. So sorry that you are having such a bad time. I hope that things turn around soon.


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.