Merry Christmas from the Crack

When Jedi Mind Tricks Fail

Scripting is awesome.

A simple request

(Padme Amadala, Star Wars III)

(Padme Amadala, Star Wars III)

(Mash-Up of Annikin, Darth Vader, and Luke, all movies)

A Phone Conversation

My hubby called me this morning for a quick update.  He put the phone on speaker and here is the conversation with Jman:

Me:  Hi buddy!
Jman:  Hi mom
Me:  How are you?
Jman:  Good!  It is almost Monday!
(Dan in background) : you mean Saturday.
Jman:  It is almost Saturday!
Me:  Yeah, I know!!  Are you going to have a good day today?
Jman:  Yup!  See you later mom!
Me:  Ok, bye.

This normal phone conversation brought to you by over 3000 hours of therapy and one awesome kid.

You know what autism gives you?  Perspective. On what is really important.  No matter what the step, what the milestone, I appreciate every single one.

How This Fat Chick Turned Into a Yogi

(and stayed fat)

Yesterday I got an email congratulating me on my one-year anniversary of going to Heat Yoga.  A year ago, my friend talked me and my large booty into going to a yoga class in a room that was 105 degrees F.  I thought I might die.  Seriously, I saw black spots, a white light, and I might have heard the call of angels.  Or was it just a buzzing in my ears?  Not sure.  Based on that first experience, I cannot believe I kept going.

I counted back and over this past year I have gone to Heat Yoga 46 times, with the last 13 times just in month of September.  I stopped for several months because I ended up in the ER post-class with a migraine (my own fault) and got a wee bit skittish.  But the benefits has been so awesome that I have turned into a yogi.  My hips, which have hurt since Jman was born, have gotten 100% better.  I am stronger, both mentally and physically.  I am both humble and proud.  Humble, because 9 times out of 10 I can barely stand on one foot as I grow my "tree".  Meanwhile, the skinny b*tches around me can apparently put their foot in their crotch with arms outstretched to the heavens.

 Proud, because I am standing on one foot doing "tree" in a 105 degree room carrying an extra 50 lbs around (let's see some of those skinny b*tches do their tree with a 50 lbs sack potatoes strapped to their torso!).

Not that I am bitter about the skinny b*tches.  Really, I am not.  No, really.  Okay, well, maybe a little.  But I am working on it.  We are all, after all, on our own yoga journey, and there is no judgement in the room.  Or if there is, I just have to chalk it up to making everyone else feel better about themselves.  All I have to do is set my intention at the beginning of class (99% of the time it is "To Survive") and do my best.  Because whether people believe I belong there or not, this yogi is staying.

Disapproval, Scripted

Jman is perfecting the art of conveying his opinion via scripting.

This script is brought to you by the Cartoon Network's Lego Star Wars, the Yoda Chronicles.  

Here is the video sample for your viewing pleasure.  Enjoy!!

A Literal Bedtime Conversation

He's a giver (not)

Reboot

I have been tossing around the idea of starting a new, 'fresh' blog.  One where I talk about other things.  Like yoga.  Or books.  Or things of a spiritual nature.  Or just funny stuff that Jman says.  Not just autism.  Of course, still autism, but not just autism.

So I tossed around a bunch of different names.  Here are a few of my favorites:

Fun with Echolalia
True Story
Waiting for Shoes
Stepping on Legos

But instead, I think I shall just give the o'Crack a facelift.  Change the format a wee-bit, expand it beyond its original parameters, and see how that goes.  Whatca think?

An Update Owed

I haven't had much blogging time lately.  I miss it.  Blogging lets me keep track of progress, of change, and of those stories that are just so Jman.  But I've been stretched a little too thin with work, therapy, Jman, and all that jazz... so here is a little update for those who are wondering what is that crazy boy up to:

Swimming Lessons

I decided to try Jman at swimming lessons, because he really does need some basic skills.  We found a school (Foss for you locals) that provides private lessons, and because he is on the spectrum and is not able to do a regular class (yet!), we got the lessons for half off.  Now that is being special needs friendly!!!  (Note:  still crazy expensive.  But if we can get Jman swimming.... totally worth every penny!!!)


Birthday Parties

I know what everyone was doing 6 years and 9 months ago!!!  What IS it with February birthdays?  We have been to three parties so far, with Jman having his own as well.  And might I say, so far he has done A-MAZ-ING.

Busing

We did it.  We got busing for Jman.  It wasn't quite the struggle I thought it would be, and it was far more psychologically traumatizing for Big Daddy and myself than it was for Jman.  In fact, he is completely taking it in stride.  For us and our life... this is a HUGE time saver and life saver.  Details to come, but lets just say that for now, we are very happy.

And some FUN too...

He used to hate snow.
Take that, snow!

Joined the Power Rangers

And Fell in Love

Just a little update!  Hope you enjoyed it!

One Word

You'd think we'd have tougher skin, us parents of special needs kids.

You'd think after we hear time and time again how our kids are 'not enough':   not 'smart' enough, not 'compliant' enough, not 'good' enough... that we would grow leathery tough skin.  Sunburned-cowboy tough skin.  Superman-of-steel tough skin.  The kind of skin that doesn't prick and doesn't bleed.  Skin that acts like armor and deflects all the intended and unintended slights the world aims at our babies.

You'd think...

Yet, there are always chinks in that armor.  The little crevices of soft flesh that apparently beg for the wounds.  And people always seem to find those chinks, and aim those poison arrows there whilst we aren't ready and armed for battle.  When our guard is down.  On the rare occasions our guard is down.  And all they need to say is one word, one sentence, and ugh... it is like a blast into the heart.  Suddenly, what once was joyful and peaceful and good becomes tainted, and I want to stay far and fast away from it, lest I get another glancing blow.

That is how we can become islands, building walls between us and the world that seems to have no room for us and our babies.  What a cold place that the world becomes.

But here is the thing... we can't do that.  We can't do it to our babies, and we can't do it to ourselves.  Indeed, the world may be made up of unthinking people or straight up *ss*oles, but shuttering ourselves away only hurts us.  Because as we lose the world, the world also loses us.  We don't change the world, or their perception of us in the world, but making ourselves invisible.  We must be visible, and we must be vital, and we must be loud, and we must be relevant.

So we don the armor again and go forward, shielding our babies as best we can and preparing them to be able to fight their own battles and demand their own respect.  Maybe that is all we can do.

When the Milestones Don't Apply

In the beginning, when you learn your child has a delay, then a disability, you spend a lot of time worrying about the "will he evers".  Will he ever talk? Ride a bike?  Read a book?  Have a girlfriend?  Be able to go to the store without a meltdown?  The list goes on and on and on....

When the milestones don't apply to you, you feel adrift. No moorings to give a sense of where you are and where you are going.  It can be a frightening, disconcerting place to be.  It doesn't surprise me at all that when the messages you get are so vague and unclear, the trajectory uncertain, and the future presented so blatantly negative, so many people cry out for a "cure" and chase every miracle drug or therapy out there.

But what if we tossed those milestones out?  What if we accepted that some brains are going down a fundamentally different path, and their development cannot be tracked on growth charts?  What if we were, as parents, able to accept this different, unknown world for what it is, and accept the child for who they are?  And what if... through that acceptance... the child was able to become who they are meant to be?  The very best version of themselves.  And what if our definition of 'success' changed as well?  And our definition of what is a good life?  Is it possible that doing that could lead us to where we need to be, instead of just where we want to be?

I have been working hard at accepting Jman's development for what it is.  I try very hard to push when he is ready for it, and not push when he isn't.  I try to be sensitive to what his needs are and what his next step is.  It can be agonizing, because sometimes those steps seem insurmountable.

And then it happens.  Giant, huge, amazing things tumble out of him like floodgates opening up.  He goes from disorganized mess to got-it-going-on boy.  He does what I didn't know he could do, and does it with style.

Step-by-step, he teaches me to chill out.

He walked right in and sat in the dentist's chair.

She cleaned his teeth!
Hell, she TOUCHED his teeth!

"Don't worry, Mom.  I got this"

I will never, ever, ever, not believe again.

Thankfulness Fail

I made it five days on the blogging Thankful train.  Blogging FAIL.  

But in my defense, I have posted thankful posts on Facebook every day.  So that has to count for something.  

AMOT Day 5: I am an American

I Heart Bacon

Are you exhausted with the entire campaign season?

Yeah, me too.

It can be exhausting to go through the campaign gauntlet, assaulted with ads on TV, radio, Internet, your mail, driving through the neighborhood, and so on.  Signs, commercials, glad-handers, bumper stickers.  I feel like we... as a community... are so fractured during these times.  And it is tremendously difficult for me to drive by that house on the corner, which has covered their lawn with campaign signs and political statements that I wholeheartedly disagree with and not think "Damn, they must be a**holes".

I'm working on it.

But one thing that I am tremendously thankful for is that we do live in the United States.  Every four years we get a say on who leads us into the future.  We get a choice, and that choice is a precious thing in this wide world of ours.  It might not feel that way.  After all, what is my vote in the sea of all votes, in that mystery that is the electoral college?  A pebble in the ocean, perhaps.  But there are people in this world who do not even have the pebble.  There are women in this world who do not have any choices for their lives, any voice whatsoever.  It can be so easy to forget that, get absorbed in what we don't have and forget to really cherish what we do.

It's more than taxes.  It's more than domestic policy or foreign policy.  It is more than religion and religious differences.  Voting is about ownership of our home and of fellowship with each other as citizens.  We are a family after all, and when it comes down to it, we can bicker like siblings but we have to come together in the end and go forward for the greater good.  And when you make your choices at the polls tomorrow, I hope you keep in mind the fact that all citizens of this country are your brothers and sisters and you are making decisions not just for you, but for them.

I am Thankful to be an American.

Go Vote.

AMOT (Day 2-4)

I meant to write about Thankfulness and Appreciation all month.  But Blogger broke, and I couldn't post like I wanted the last few days.  So here is a rundown of my intended posts, in abbreviated fashion:

Day 2:  I am thankful for Noosa yogurt.  Yes, yogurt.  Dan and I went on a low-carb diet and my one daily "sin" is Noosa yogurt.  It is heaven on a spoon.  Seriously, I would eat this stuff over cookies and ice cream every day.  And I do.  Simple pleasures, but Lord knows I need those!  And in case you are wondering, the low-carb diet thing totally works... especially for my husband.  Might work better for me without the Noosa, but I refuse.  I will go down with the Noosa clutched in my hand, baby!

Day 3:  I am thankful for our super fantastic babysitters.  They are a pair of sisters from down the street who have a brother on the spectrum, totally get Jman, and he loves them.  They made it possible for Big Daddy and I to have a date night.

Day 4:  I am truly thankful for the new friends we have made via the connections of autism.  We had a night with friends who have two awesome boys on the spectrum.  We watched football, watched the kids play-ish, and chatted chatted chatted.  It has been a very long time since we have done anything like that, and it was pretty awesome.  You know, we have lost a few friends (or potential friends) along this autism way, but the ones we have gained far outweigh the ones we have lost.

And that is it in a nutshell...  three days of thankfulness rolled into one post.

A Month of Thanks (AMOT): Day 1

I have been notably absent.   I have a thousand excuses and none.  But I am vowing to make up for it this month.  This month, I will devote to expressing my thanks right here. Reflection can be very good for the soul.

Today I want to express my thankfulness to my wonderful Facebook posse.  And here is why...

About three weeks ago, Jman suddenly and inexplicably decided that he wanted to watch Elmo Happy Holidays.  Don't ask me where this came from, or why, or how....  just accept the reality that in early October we were watching Elmo Happy Holidays over and over and over again.

Not that you are overly interested in the finer plot points of Elmo Happy Holidays, but it is important at this juncture of the story that you know that Kelly Ripa plays 'Mail Carrier Kelly" and delivers many a holiday card to Elmo through the course of the video.  Jman discovered the wonders of... the mail.

So I tossed out this:
_________________________________________________________________

Pia Prenevost

October 17 near Minneapolis

Do you want to make a little boy very happy? Send him a card in the mail.
Jman has just gotten the idea of mail and getting cards in the mail (thanks Elmo). So if you wanna make him a happy boy, send him a card. That is all

Like · 

________________________________________________________________

I was flooded with responses from FB friends.   We are up to seven cards from four states from random friends from Facebook, some "real life" friends and some of the online variety.  When the first card arrived, this was his reaction:

To be specific, his response was, "Oh WOW.... Happy Kwanzaa!!!"

(Elmo encourages multiculturalism.  I'm good with that.  And this is an excellent example of echolalic scripting in practical action.)

With every card he has gotten, he has been more excited.  He loves it.  I have used it to teach him his first and last name, his address, and about writing cards and letters himself.  This is one of his first attempts:

How about THAT?

In a world in which there is so much anger and resentment and blame... where the social and political climate is so fractured and contentious (and Facebook definitely can highlight the hell out of that)... it is really wonderful when people can still do these simple little things to show friendship and caring with each other.  It means the world to Jman and the world to me.

Thank you.

When Words Fail Me

Unrelated photo:  J-man's Art.
  I actually think it is really good

For the last two weeks I have been staring at Facebook.  Specifically, I have been staring at J-man's kindergarten group page.  This page has been designed to communicate with the other parents who have children in J-man's class.  People pass on information, ask questions, you know...  an all around get-to-know-you page.  It is not overly active, but there are quite a few parents who have joined, so it reaches a large number of his classmates' parents.

And I have been staring at it, fingers inching.

You see, I want to tell them about J-man.  I want to tell them how awesome he is.  I want to tell them about his challenges.  I want to enlist their support.  I want them to teach their children about differences, about kindness, about understanding, about friendship.  I want them to know how loved he is and how worthy he is and how he is really worth it.

And I can't write a thing.

I am afraid of screwing it up.  I am afraid of scaring people away.  I am afraid of rejection.

It seems like if I could just form the perfect words, the words that would move them to take an interest in him, then maybe I could grow a caring community for him.  Maybe he would have friends, in spite of his obvious challenges with having friends.  Maybe their children's frustrations with J-man (which are sure to come someday) might be tempered with understanding.  Maybe, just maybe...  this big, bad scary AUTISM word would not be so big, so bad, and so scary to them.  Maybe it would pave the road to acceptance.

I love words.  It is ironic, since words are such a struggle for J-man, that I love words so much.  I love to take words and paint vivid images.  Wordsmithing.  I don't know that I am terribly gifted at it... I do believe I am at least moderately amusing... but I love it and love that I can do it.  But now, words fail me.

Since when does someone get writer's block over a letter to kindergarten parents???

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...

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.

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.

don't speak too loudly, but...

pssst....

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.
terrified.
freaked out.
and hopeful.

VERY HOPEFUL.

Tokens

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.