One More Week of CPSE

I've been up since 3:30 this morning thanks to The Boy.  Tossing and turning in his bed, drifting in and out of restless sleep, listening to the sounds of legos clicking together. Too tired to argue, hoping he'll fall asleep on his own.

At 6:05 he falls back asleep and I know I have to wake him up at 6:30 to get ready for school.  And then I realize it's Friday.  Another week of his ESY is over.  And there's one more week left.  And then...he's done.

And after next Friday, all of The Boy's home based services will be done.  No more SEITs.  No more Board of Ed funded OT sessions at the sensory gym.  And I want him to continue at the sensory gym, which means I'll have to pay privately.  Which means a LOT of money.  It shouldn't be too bad, insurance should cover some of the cost.

But for the first time in three years, we'll be on our own.

It'll be our 3rd major transition.  First EI.  Then CPSE.  And now...CSE.  

And The Boy will be starting a new school.  With new teachers,  new students.  A new bus driver.  New routines.  Come Setember - EVERYTHING will be different.

So in addition to sleep depreviation, depression there's a side of anxiety thrown in - you know, for good measure.

It's NOT the most wonderful time of the year.  Not for me. 

I'm Not Ready.  Is The Boy?  I think he is.  Maybe that's why I'm so nervous.

    

Wordless Wednesday: Progress!

Norrin writing his name (by himself!) and doing pre-k math :)  
Thank to his new amazing SEIT - Ms. N  

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.