Tuesday, August 21, 2012

Best Laid Plans and Other Myths

J-man had his first week of kindergarten last week.

I pretty much banked on the fact that I wouldn't cry.  I mean, come on...  after all the drop offs we've have, how could I possibly cry over him going into a kindergarten classroom.  After all, I am not an overly sentimental person.

When we arrived and clustered with all the other kids and parents, I was cool.  It was good.  And it stayed good until...


... the teacher came and lined them up and started toward the classroom.  And there was no para from J-man.  None.  He was suppose to just line up and go with the class.  He looked terrified and confused, and I imagine so did I.  Big Daddy just looked pissed.

Where was the para?  You know, the one we all agreed would be with J-man during the day to help with transitions and provide him supports as he learned about this crazy, scary place called school.  The one he needed because of his extreme language issues and difficulty understanding.  The one we specifically all agreed to in the meeting a short five days before?

We walked him to the classroom ourselves.  There really was no other choice, as there was no way he would have gone on his own.  We stopped at the door and his kindergarten teacher, Ms L, was there.  She saw the look of confusion on our faces.  Or maybe frustration with confusion and a tint of ticked-off.  Anyway, she greeted J-man and took him by the hand to lead him into the classroom.  He turned back, a bit frantic, and told us to "wait", using both his voice and signs (which usually means he means it!).  Once safely in the room, we hit the front office to ask what-the-heck was up with the no-para situation.  We were told that the para would come to work with him in an hour.

That meant the for the first hour of his day, he was on his own.

Yeah.  You can imagine how well THAT went over with us.

(Let's just say that the next day, he had a para from the first minute he arrived!!!)

So I cried.  We went to lunch, and I cried, worried and was frightened for him.  I was so terribly frustrated, too.  After all that planning, all the meetings, all the conversations and double checking and hovering, it still wasn't enough.  The first hour!!! How could they have screwed up on the FIRST HOUR OF SCHOOL EVER?  How do I even wrap my head around that?!

Of course, he survived!!!  All is well now.  He seems to like kindergarten, or at least is not protesting going, which is a very good sign.  And apparently he is impressing them with his abilities already.  I really like the teacher, the para, and the SPED teacher.  They all seem eager to work with him, which is good.  So forward we go, one day at a time.  What I need to remember is that even if I think I have everything worked out and all is right with the world, it is probably not.  Constant vigilance is needed.  Which really sorta sucks.

Sunday, August 12, 2012

The Last Weekend

This was our last weekend before Kindergarten.  We had a mommy & J-man weekend and went to the zoo to see dinosaurs (don't ask).

Tomorrow J-man becomes a Kindergartener.  He crosses that invisible line that moves him from young childhood into school hood, and a door to a time closes.

It is unlikely I will cry.  I am not really a crier.  Or at least, I am not a crier with these kind of "transition events".  After all, I have been dropping him off at some therapy or another for years now.  Afternoon Kindergarten for three hours is nothing in comparison to sending him for 40 hours a week of ABA.  So no, I don't think I will cry.

But I am sad.

Oh, I am anxious, excited, freaked-out, hopeful, and scared too.  All of those feelings are for J-man.

I am sad for me.

I am not ready for this stage of my parenthood to be over.  To not have J-man be my little boy.  To have a school-ager: not a baby or a toddler or a preschooler.  J-man being my one and only, I am sad.  So much of my parenthood thus far has been far-and-away from my expectations... well, of course it has... and while I have wrestled with that, I have also reached an uneasy peace with it.  It is...and has been.. what it is, with some bitter and a lot of sweet.  I will not regret a moment.

And I am not ready to leave this part behind.  This passage makes me sad.  I will never be this mother again...  I will be his school-age mother, and it will be great and good.... but I will never be a mother of a little boy again.

This was the last weekend for that.  Some bitter and some sweet.

Friday, August 10, 2012

don't speak too loudly, but...


hey you...  shhhh....

i only dare whisper lest i jinx things....

but i wanted to tell you about our amazing iep experience.

it was good.  it was great.  it has set the stage for good things.
my doubts about the school and their commitment to jman have been soothed.

it SHOCKED me.  okay okay, shhhhhhh..... can't speak too loudly.

the team was amazing.  the team wants to do right by jman.
the kindergarten teacher has a plan.
a real plan.
a well thought out plan.
jman got a para.  a full time para.
jman has a speech therapist;  one who is willing and eager to talk to his private speech therapist.
jman has visual schedules.
jman has a calm room.
jman has a token system and visual supports.
jman has a sensory plan.

jman starts kindergarten on monday.  MONDAY.

i know, i know.

monday is coming... three days and counting... and we launch.
and with all the good and the great, mommy is still scared.
freaked out.
and hopeful.


Thursday, August 2, 2012


Can J-man ride a bus?

It started out with that simple question.  Is J-man capable of riding a bus... a regular bus... without supports?  With a para?  Or does he need access to special education busing?

I was preparing for J-man's IEP meeting.  J-man gets TWO of those... one for his home district and one for his charter school.  The IEP from the home district can act as his charter IEP, but there are two meetings.  Two opportunities to get it right.  Or wrong.  Two opportunities to give me an ulcer.  One thing about IEPs... especially initial IEPs... is that they set the stage for the year.  It is important to get it right.

Big Daddy and I have agreed that J-man will not be taking a bus this year.  We are helicopter parents, after all, and the idea of putting him on a bus is a little like telling him to go rent his own apartment and get a job.  Not gonna happen.

But when it comes to the IEP, getting busing secured it pretty important.  It is an expense that districts don't relish, and yet all children are guaranteed transportation to school by law.  So if a child cannot be safe or tolerate regular busing, special education busing is the accommodation needed.  If you don't address it from the get go, and then later you need it, it becomes harder to justify.  

I was uncertain if we could require special education busing with a charter school (we can).  And we aren't planning to use it anyway.  But for some reason I just know it is important to fight for it. To have it there when we are ready for it.  I spoke to a couple of advocates at a local agency and the message they gave me was clear:  it is very important to emphasize worst-case-scenarios for J-man.  Emphasize how disabled he is.  Make sure you  don't give them any reason to deny him a service.  No hope.

It made me sick to my stomach.

How do I talk about my Amazing J-man that way???  How do I present him as being completely unable to manage a bus, or a classroom, or a playground, without supports?  Because to be honest, I don't know.  To be honest, some days he might be very capable?  Sometimes it works, sometimes it doesn't.  We are proactive people:  hope for the best, plan for the worst.  Not expect the worst, but know it could happen and try and have a game plan for it.  And a lot of the time we get the best.  Or at least the good.  But we don't invite trouble either... we pick our battles and select where we will challenge him and allow when we need to back off.  We are child led so we listen to him.

I was depressed.

And then, a ray of light!!  Or at least, good sense!!  A posted my woes on my Facebook page and asked my ASD posse to help me out.  Karla, an autistic adult and brilliant owner of Karla's ASD Page provided me with some of the best insight I have seen.  Here it is...

Let's say you have two children: Jimmy who is neurotypical, Bobby who has autism.

Each child gets 10 tokens for their day.

For Jimmy to ride the bus, it takes 1 token.  So for the rest of his day, he has 9 tokens.  Nine tokens to learn to read (maybe 2 go there), to sit still in circle time (1 token), to eat lunch with his friends (3), to play and be social  (another 1)... and so on...

For Bobby to ride the bus, it takes 5 tokens.  So for the rest of his day, he only has 5 tokens left.  Can he ride the bus?  Yes.  But what does it COST Bobby to do that?  What won't he be able to do because he used so many 'tokens' keeping it together to ride the bus?  And is riding the bus a priority for those tokens?

Obviously, the answer is no.

To me, her answer means that we pick the important things to get the tokens, and the less important things we ease the cost of.  Support, alter, or omit those things that cost too much and don't provide a real benefit.  Seems to make a lot of sense to me.

I presented this analogy to the home district IEP team (and gave Karla full credit!!) and .... honestly... I think jaws dropped.  The SLP wrote it DOWN in her notes, she liked it so much.  I could see that this perspective was greatly appreciated and was a perspective that they had never heard before.

And he got busing.

Not that we are gonna use it.


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