Thursday, December 30, 2010

A Christmas Story

I have had a little bit of writer's block.  Or is it blogger's block?


So much has been happening, ranging from ugly viruses to Christmas holidays to work to everything J-man, that where to start and what to say has alluded me.  And to be honest, it still does.  So, in order to break this log-jam, I will just start with a little Christmas story.

We didn't know how Christmas would go this year.

Last year, J-man really didn't get the concept of presents.  And Santa??  Who is that??  And while it was clear that this year he could identify Santa, I was pretty sure he didn't get the concept of Santa. What I wondered, though, was would J-man finally understand the concept of presents?  That they aren't just pretty colored boxes under a tree, but that inside the package was toys? 

J-man totally has the concept of toys.  Daily we are bombarded with requests to go to 'Arget' for 'oys'.  Every Day.  His love of toys... especially new toys... has reached epic levels to wit we must nip in the bud lest we become financially insolvent.  So I suspected that once he opened one or two presents he would get the concept pretty quickly.

And he did.  By present #3.  And he could have stopped... at present #3.  Allow me to introduce...  

Mooooooooon  Baaaaase

J-man, Cousin A-man, and the MOOOON BAAASE
One of the few moments of interactive play between the boys.
Mostly, they fought over it.
Over the last few months J-man has become quite devoted to looking at toy catalogs.  Quite devoted.  Like reading a book, he would look through the pages, point to toys and want me to label them.  His favorite, by far, was this Alien Moon Base and Rocket.  So we took a chance... Grandma got the Moon Base and I got the Rocket.... and hoped that his devotion to the picture in the catalog would translate to toy-love at Christmas.
We had him at Mooooon Baaase

His eyes were huge, people.  HUGE.  He insisted on opening it immediately, and from that point onward all other presents took a back seat to his Moooon Baaase.  He wanted to make extra sure we knew what it was.  He was very... VERY.. possessive of it.  Many a battle was waged between J-man and A-man over playing with the Moon Base and Rocket.  Sharing is not easy at Christmas. (How ironic)

But other than the occasional toy battle, J-man shone bright.  He cuddled with 'Papa'. He went sledding for the first time with us. He was fully engaged in decorating the gingerbread house with 'Mumu' and A-man, putting candy pieces on the roof.

It was a charming, beautiful Christmas.

The best Christmas present I could ask for.

Friday, December 24, 2010

Christmas Peace

It does not mean to be in a place
Where there is no noise, trouble, or hard work
It means to be in the midst of those things,
and still...
Be calm in your heart.

A Blast From Christmas Past

A Merry Christmas to you all!!! 

Or Happy Hanukkah (from earlier this month)!!!

Or Happy Festivus, if that is your brand of Holiday cheer!!!

Whatever you celebrate, wherever you are,
may you have those you love close
and find joy and peace this season.

Thursday, December 16, 2010

Visiting Santa

Last Christmas, Santa was not a big success.

However, for some unbelievable reason, the Easter Bunny was.  Explain that one to me.

The question of the year:  How would J-man react to Santa this Christmas???

So we arrived at the Mall and worked our way to Santaland.  As we rounded the corner, there He was.  I had planned ahead, choosing a Tuesday morning on the hopes that it would be quiet at the Mall and have a minimal line to see Old Saint Nick.  And I was right... the perfect situation to see Santa.  No line.  Same great Santa. 

As we approached, J-man stopped in his tracks.  I knelt down, pointed to Santa, and asked J-man, " Do you know who that is?"

J-man looked wide eyed and said "Ann-ta".

"Yeah,' I said approvingly, 'Do you want to go say "Hi" to Santa?"

J-man grasped my hand, pulled me in the opposite direction, and said emphatically, "Nooooooo!"

Okay.  Message received.  No Santa picture this year.

And then, J-man's preschool had a family Christmas party.  And guess who showed up??

This is as close as J-man would get to Mr. Claus, but he was perfectly fine with him at a distance!   And now we have a Santa picture this year.  All is well with the world.

Monday, December 13, 2010

A Conversation at Bedtime

Yes, you read correctly.  A conversation. 

The scene: J-man playing with my iPad, doing the Starfall app.  (By the way, he can do memory matching games.  Who knew...?)

Mommy says, "Ok buddy, bedtime in five minutes." 

J-man looks up from the game and shoots me a disgusted look.

J-man says, "Noooooo."

"Oh yeah, buddy.... five minutes." I repeat.

J-man sighs.  He looks me straight in the eye and commands, "Smiiiile!"

Apparently, if I am smiling and happy, he doesn't have to go to bed.  Probably worked.  He got another 10 minutes out of me.

Sunday, December 12, 2010

Boys Will Be Boys

Really, believe me.... we don't promote violence.  Really. 

But... well... somehow, boys just know how to be boys....

This video was shot at my birthday party last week.  The "battle" began spontaneously between my nephew A-man (the blond) and my J-man (shorter and not so blond), and after a minute of completely normal, appropriate boy battling with the very safe foam swords, I just had to try and capture the beauty.  They loved it. I loved it. 

I think I see some pretty good interaction and turn taking going on. What do you think?  Oh, and although you can't hear it, J-man followed some "encouraging instructions" from the sidelines.  The Cops and Robbers soundtrack provided for your pleasure (and to protect the bad influences.. ahem...lets just leave it at that).

J-man has really taken a keen interest in his cousin, which is just flippin wonderful.  A-man is a little older (5) and filled with energy and great ideas, and J-man definitely is paying attention.  As I have always known he does.

But really.... believe me.... we don't necessarily condone violence...  but what is a little foam swordplay between cousins?

Wednesday, December 8, 2010

When God Whispers

On Friday, we fired our school district.

And it feels like I have shed the weight of the world.

Like I can breathe again, deep and easy.

Like I am free.

Until we cut them loose, I didn't realize how heavy and trapped I felt.  Like I was slowly drowning.  My hubby said our relationship with the ECSE department was like a relationship with an abusive spouse that you just keep going back to, hoping they will change.  That things will get better.  Or that you have somehow convinced yourself that you can't live without them.  But you can...

He was right.

(Relish that confession, babe, it doesn't happen often ;)

As some of you are already aware, we have had some issues with the school district services.  While I mentioned it on one or two occasions, lately I remained relatively vague about the issues. In part this was because we were in the thick of it and I wasn't sure of the outcome. However, through the magic of server-IP-identification, I also became aware some time ago that someone(s) at the school district have been regularly checking out my blog.  I will confess...  I am kind of amused.  Heck, the Internet is an open forum and I do put it out there.  And actually I have no problem with them reading my blog:  I am proud of my boy and all he is doing! But I was... hesitant... to go into specifics about my anger, frustration and angst regarding our conflict.  Not that I don't stand behind my blog...  what I say here I proudly own... but you know, they don't need to know everything.

Of course, now that they are fired...

I will admit I've had some fantasies about writing this post.  My hubby has been dying for me to tear the district apart, to name names and put it all out there.  But now that it is here...  what do I say?  That they acted poorly, were manipulative and lied?  Of course.  That they have made inappropriate and possibly destructive decisions?  Yep.  That they have failed to listen to us or treat us as equal partners?  Yep  That they have failed in their legal, ethical, and moral obligations to the J-man?  It goes without saying. 

We wouldn't have fired them for anything less.

But aside from telling the basic story in my letter, I have no taste for giving them much more of my time.  Instead, I would rather focus on why it took me so damn long to see what has been obvious all along...

We don't need them.

In case you are reading this, IEP "team", allow me to repeat:

We don't need YOU.

We will do this all on our own.  In many ways, we have been. You had a chance to be a part of something magical, something beautiful, something you could have been proud of.  Something meaningful. If you would have just opened your eyes and really saw him...

You lose.

The system is stacked against families.  The power structure leans heavily in the favor of the school district.  Don't get me wrong. The law is built for us.  But failing to follow the law carries few penalties and doing what is right for the child and the family is not necessarily rewarded.  The ethics seem nebulous at best, and it appears to be fairly easy to convince themselves that they have the knowledge and authority to be the ones making the decisions.  It is okay to keep parents in the dark about their options, because if parents know too much then they might challenge you.  As a parent, this attitude can feel very paternalistic:  Do what we say because we know best.  It is our system, our programs, and if you don't fit or agree.... well, too bad, so sad.  So much for the Individual part of IEP.

So we started with Hope.  Hope we get 'the good ones'.  Hope they will really see our child and work with us.  We smile and try and cross our fingers and pray that they share our vision.  And even as the evidence mounts that is not the case... we still Hoped.  Maybe they will see him as we see him.  Maybe they will.... 

And as Hope starts to fade... it is replaced by Anger.  Anger that they are failing in their duty.  Anger that they won't listen or maybe just don't care.  Anger.  We pay taxes.. have since we were 16 and probably will until we die. We have one child... only one.. and I think we have paid our dues.  J-man is a citizen of the United States of America and our society has decided that ALL children deserve a quality education. They are not allowed to fail. This is J-man's right.  They should feel ashamed, right to the core. 

And under all that Hope and Anger is Fear.  Fear about making the wrong decision.  Fear about defying 'authority'.  Fear about doing it all by ourselves... what an isolating, lonely feeling... How will we do what needs to happen for J-man?  Why can't they just love him as we do?  There is so much to love...

I was stuck by Hope, Anger, and Fear.

And amongst the chaos of this week... the lost Hope, the Anger, the Fear...  I read this post by my friend Ange at Life in the Pumpkin Shell.  The last line struck a chord in me so strong and clear it was like God himself whispering in my ear:

One gift allowed me by the spirits who guide me through...'Walk away when it feels wrong.'

And then, in a wonderful repost-response given to me by Ange about their experiences with their son  (who reminds us of J-man so clearly it is scary), I found solace and fellowship.  And Courage...

So while Hope, Anger, and Fear have failed me,
the Courage to walk away will save us all.

And it feels like we have shed the weight of the world.
Like we can breathe again, deep and easy.
It feels like we are free.


Sunday, December 5, 2010

My Birthmas Present

I turn 40 on Wednesday. 




Anyhow, the greatest Hubby in the world and the greatest Grandma-Mumu  & Grandpa-Papa in the world got together and got me the coolest gift ever!

Yes, my very own iPad!

I had a hard week so they revealed it a little early.  I have been jonesing for an iPad for quite a while.  It just has so many cool features that we can totally use around here... surf the web from the couch, watch movies on a long car ride, play games, etc etc.  Yes, it is a toy.  But, to be honest, I don't have a lot of toys. Also, the iPad also offers A LOT for kids with special needs like my little J-man.  Shannon Des Roches Rosa and Robert Rummel-Hudson offer a great commentary on the impact of the iPad for kids with special needs.

So it is a toy I can feel pretty good about all around.  It is for me AND the J-man.  Guilt assuaged.

That is, if he could figure out how to use it..... Hmmmmm

J-man has shown limited interest in the computer up until now.  Recently he discovered the joys of YouTube, but just enjoyed watching and didn't show interest in trying to use the computer in any other way.  The idea of the mouse alluded him.  He just wasn't ready which is ok because he is only three and a half.

But what about the iPad? 

Allow me to present J-man's iPad skills. 

Game One:  My First Word

In this game, he moves jumbled letters on top of each letter in the word.  When the word is done, the graphic of the word "dances"

Game Two:  Talking Santa

A pure game.  You hit buttons to have Santa do different things (or have things happen to Santa).  Try to ignore the sociopathic joy he gets from assaulting Santa with a snowball, and notice how he follows my directions and shows shared enjoyment. 

At this point I have owned it about 12 hours. 

J-man's time to learn it:  5 minutes.

Thursday, December 2, 2010



I thought I might do another SNBH.  This Week's Theme:  What is a recent accomplishment that your child has made?

Anyone who follows me regularly knows the strides J-man has made recently.  I view most of his daily strides as major accomplishments, but I decided yesterday's story was worthy of this topic.

The "guys"
I was parked at the kitchen table working on one of my least-favorite chores:  paying the bills. (Anyone with me on this one?)  J-man comes running into the kitchen and grabs my hand, pulling me out of the chair and into the dining area.  In his hand he was clutching three of his "guys":  Superman, Batman, and the Joker.(He loves his guys)  He looked me directly in the eye with this urgent need in his expression. 

J-man said to me, " aAAh iIm!"

aAAh iIm??  What the....?

"What honey?" I said.

" aAAh iIm!"  he said again, insistently.  Clutching his 'guys' in his hands, J-man rubbed his fists up and down on his chest, trying to sign what he was saying.  "aAAh iIm!"

I imitated his sounds and sign, showing him I was hearing him.

"I'm sorry hon. I don't understand" I said regretfully.

But he persisted trying to get me to understand.  He didn't quit.  He signed.  He forced his words out, even though his mommy didn't understand.  He hung in there.

I watched him, as frustrated as he was, looking for any clue that might help me figure out what he was trying to tell me.  I watched his signing, listened to his words, and looked at his hands clutching his 'guys'. And suddenly it hit me like a ton of bricks...

"Bath time?!?!"  I asked excitedly.  He glowed with relief and excitement, "aAAh iIm!" with the sign for bath.


Some time ago J-man went through a spurt of avoiding bath time.  He just wanted to play, and bath was just a rude interruption.  At that time, we decided to try and make a game of it by putting his "guys" (and he has a lot of guys) on different stairs going up to the second level bathroom, and then had him gathering them as he went up the stairs to the throw his 'guys' into the 'pool' (bath) to go swimming.  And he took to this like a fish to water (hehehe) and it has become a routine ever since.  His guys get a bath.  His guys go swimming, get washed and dried.  He has once again embraced bath time.

How fundamentally frustrating it must be for J-man.  To have these thoughts, these ideas, these words, stuck in his mind and in his throat.  To know that communication is important, to know that he can't do it well, and to know that we adults may... no, probably... miss what he is trying to say.  How does a three year old cope with that?

And yet, he persisted.  He persisted in spite of the fact I didn't understand, in spite of his best efforts, in spite of how very hard it was for him.  Yes, this time his Mommy figured it out, but in his world that is probably the exception more than the rule.  And still...

He persisted.



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