I don't mean to suck at blogging...

Really, I don't.

But somehow... and I am still unraveling how... I have hit a giant rut.  A snag.  A bear trap.

So bear with me.   Don't leave.  I will be back.  I promise.

Vacation Post Due

I have been an AWFUL blogger.

Part of it is because I have been working full time, doing advocacy work at the Capitol, preparing for the Highlight It Up Blue for Autism fundraiser/awareness event, and taking care of J-man and Big Daddy.  But hey... I did skip out on the seminar at J-man's program entitled "Parental Burnout - what you need to know".  I am working toward being the poster child for parental burnout... I am not sure I need to go to a seminar on it.

The other reason is that J-man and I flew down to Arizona to visit my parents.  It was a long weekend, and there is lots to talk about, and unfortunately... because of the above events this past month... my brain cannot possibly convey the terrible wonderfulness of our trip right now.  So that will have to wait.  Maybe this weekend I can write something coherent... if I am not in a stress-induced coma.

In the meantime, two photos.  One of the oh-so-awesome J-man sporting some serious shades...

... And the next of me, sporting my new blue highlights.  I just want you to know that I hate pictures of myself, but I am sharing it here because of YOU.  I am just that giving.

I promise much more entertaining blogposts in the near future.  

School Daze

And so it begins...

My yin and yang.  My highs and lows.  My dream and nightmare.  All this and more has resulted from a single, crazy, amazing event.

J-man got into the "dream" charter school.  For Kindergarten.  This fall.  THIS FALL!  

*sob*

Those are tears of joy and dread, people.  Of hope and doubt.  Of confidence and fear.

I am so excited, confused, conflicted, excited... oh wait, I said that already...  well, there you go.  I am a whirl of mixed up emotions.

Of course, my first mistake (or act of utter genius) is that I applied to have J-man enrolled at the "dream" school to begin with.  You see, we didn't plan on enrolling him in Kindergarten this year.  The plan was to keep him out until he was six.  Give him time to mature, etc etc.  And I still think that is a really, really good plan.  A reallllllllly good plan.

But....  well... for some crazy reason I thought that it couldn't hurt to apply to go to the "dream" school.  I knew the odds were stacked against us.  There were only a very small number of empty slots (like, 20), and well over 100 applications.  So, you know... the odds of J-man getting in were very small and....

Here we are.

Will he be ready?  Welcomed?  Able to perform in a regular classroom?  How much support will he need?  Can they provide it?  Is this school truly as wonderful as everyone says?

Am I making a giant-ass mistake by even trying this????

And yet, as I waiver to and fro, I see things like this bus...

J-man cut out the bus, windows, and tires independently.  And glued them on independently.  And those were things he couldn't do a month ago.  So maybe I am worrying needlessly?  Maybe he can do it??

Stay tuned.  The drama is just beginning.

A Different Kind of Valentine's Day

My Valentines
Photo from 2009

I sort of forgot it was Valentine's Day.  I find that odd, as I did remember to bring Valentine's cards for J-man to hand out to the other kids at his program.  Made a point, in fact, to go back into the house and get them before we left.  But at a late afternoon lunch with Big Daddy, he said ... sorta as a side note..."oh Happy Valentine's Day".  And I went "yeah... I kinda forgot.  There is a card for you in the drawer at home....".  And we both wrinkled our noses and laughed.

We aren't anti-Valentine's Day.  While there is plenty of reason to think Valentine's Day is just this made-up-marketing-buy-candy-and-jewelry-holiday, I also see nothing wrong with celebrating love and romance.  Taking one day out of the year to just be sweet to each other.  It's cool with me.  We just didn't really do that this year.  This year seemed to be a "we love each other everyday" kind of year, with no special pressure one way or another to somehow prove it today.

So instead of roses and romance, how did I spend my day?

Well, last night our Miss Dolly had to go in for emergency surgery.  She had an uterine infection, and it needed immediate care.  I spent pretty much the entire evening at the vet with her, getting home after midnight and getting up far too early this morning with a very cranky J-man.  Big Daddy fetched a very tired and sad little dog home while I delivered J-man to school.  Cranky.  Then I spent about an hour in a meeting with J-man's OT, discussing his latest evaluation and new plan of OT action. It involves pencils and fine motor skills and feeding.   Slow and steady wins the race, right?

After the rather productive OT meeting, I embarked on my newest folly of epic proportions  project.  Somehow... and I am still not exactly sure how this happened... I got suckered talked into helping spearhead a group that is trying to get insurance coverage mandated for individuals with autism in my state.  Right now 29 states have some level of mandated coverage...  and Minnesota is not one of them.  What this means is that very few private insurers will pay for any therapy or services for autism (ABA, Speech, OT, whatever is needed), and that most families have to turn to the state Medical Assistance plans to get any coverage whatsoever.  And that coverage is extremely difficult to obtain...  lots of hoops, lots of hoops.  It is a dicey situation, and one in which I want to help rectify.  And now, suddenly, I am in this position to help recruit and organize people to write, call, and visit their legislators at the Capitol to try and get some legislation passed and policies changed.  

Dude, I am just a mom!  

Here I am with this little team of people, starting a Facebook group, making up a website, having phone conference calls and today...  today I went to the Capitol and had my very first meeting with my Senator.  I told him our story and showed him videos of J-man's progress.  Talked about the issues specific to us right now.  He asked questions.  I answered some of them... failed some... and promised to get back to him on those things I could not answer. 

Dude, I am just a MOM!

But here is the thing...  even though I believe that 'politically' he was not one to likely support issues like public insurance or putting mandates on private companies or etc etc etc... you know the drill... when he saw the changes in J-man on video! How utterly amazing he is!  When it was there, in his face, and I said to him :  we are the lucky ones.  We get to have this because my employer is knowledgeable and understands its importance.  There are so very many who DO NOT GET EVEN A CHANCE to see if therapy could help them....

I know it made an impression.  I could see it in his eyes.  I think that when this issue comes up again for him, he will not disregard it or shrug it off. He will remember J-man, the little boy in the video, and he will spend a little time learning more and being open to the issues.  And maybe... just maybe... help be part of a real solution.  That is the power of telling your story.

So I guess that is why I got suckered talked into doing this crazy stuff.  Because in the end, if I am not part of the solution, who will be?  I might be 'just a mom', but I am J-man's mom. 

And J-man matters.  

Friends

I want J-man to have friends.

I think all parents want their children to have friends, right?  Well, except that psycho mom from the movie Carrie.  And maybe that mom from the movie Throw Momma From the Train.  But, you know, their attitudes resulted in some unsavory consequences.

I want J-man to have friends.  And when your child is on the spectrum, relationships are hard, and language is hard, and processing is hard...  friendships become hard too.  Hard for the ASD kiddo, and hard for the neurotypical kiddo, and hard for parents.  Cause, you know, no one knows what to do!  Or how to do it or how to explain it or how to manage it or how to understand it.  It is just harder.

J-man's therapists have started working on social play skills, and we are getting some favorable feedback. The trouble is, of course, J-man doesn't always respond... or the other child doesn't respond... and the shared moments are lost due to whatever it is that impedes it.  Sensory processing?  Language barrier?  Attention issue?  All of the above?  None of the above?

Social communication relies on mutual give and take.  And if one... or both... of the actors are grappling with autism, it could be hard to get them engaged with each other.  So I had a thought...  what if we had a playdate for J-man at his program?  With a neurotypical kiddo.  And not just any neurotypical kiddo... my friend's son G-man... a wildly social, verbal, and engaged playmate.  Who just happens to really like J-man and wants to be his friend.  Could they become good playmates for each other with some facilitation from J-man's therapists and us?  Could G-man develop an understanding and appreciation J-man even though he 'plays differently' and doesn't always respond?  Could G-man's persistence (which he has in spades) draw J-man out?

Could they become real friends?

J-man and G-man

So today, G-man and J-man had a facilitated playdate at his program.  It was a first trial, and we were not sure if it would be a good idea or not.  We drank coffee and waited.  And wondered.  And talked about all kinds of things while we waited and wondered.  I am sure my friend was nervous.  I mean, she just left her G-man with a bunch of strangers.  Frankly, I think she deserves a reward for her willingness to try this!  (I adore you, Ms N!)

And as G-man came out into the lobby at the end of the playdate, G-man cried to his mom...

"Mom!  I don't want to go home!  I want to stay and play"...  YES!

Apparently, it was a huge success.  J-man's therapist said it went fantastic!  She said that there wasn't a whole lot of engagement during 'quiet play' (cars, trucks, etc), but during gross motor movement and action play there were wonderful exchanges between the two boys.  She said they would love to have G-man back again, and that they saw real value in working with the boys.  YES!!!

It is a first step and I hope it leads to great things!!!

Six More Weeks of Winter?

Five years ago today, J-man was born.  The high that day was -10 F below zero.  It was Groundhog's day.  Clearly, when Mr Groundhog poked his head out and saw it was -10 below zero, he turned his furry butt around and said "c-ya in six weeks, suckers!"  Every year since, Mr Groundhog has poked his head out, gave the skies an evil eye, and high-tailed it back underground for six more weeks of winter.  Withdrawing and hibernating in his little cave.

According to the folks in Pennsylvania, Mr Groundhog did the about face again today.  Six more weeks of winter.

But I beg to differ, Phil.  I feel spring in our air.  I see J-man starting to bloom.  I think our winter is nearly over and we are going to be seeing the sun.  So go hide in your hole, Phil, if you need to.

We are emerging.

Highlight It Blue LAUNCH

Wow.

I am doing it.  It is REAL.  We have a location, we have a stylist (with more to come!) and we have a plan!  I am so excited I can hardly stand it!  If you are in our neighborhood, please check out our FB page and join us!!!

So, I have had a few of you loyal readers (I am still shocked I have loyal readers) ask me how to do this?  Since I am making it up as I go along, I will give you my recipe.  Alter to taste!

1.  Pick a local autism charity group.  There are a lot of wonderful causes out there... my take is consider a group that is doing wonderful work at a local level and fundraise for them.   Go bigger if you like, but I love the idea of raising money for the people in my own community.

2.  Find some amazing stylists who are willing to volunteer their time.  Partner with them to get the materials and to set the donation you will ask for.

3.  Find a place to do it.

4. Advertise... flyers, posters, Facebook, etc.

5. Organize people to help run it.  Friends, family, etc... you might even consider other organizations like therapy centers to volunteer their time for a little free advertising.

6.  Hold your event!  Provide A TON of free information about autism so that the Highlighted can go out and educate the world!!!  Or at least the old lady at work who will wonder why you have blue in your hair!!!!

Let's Highlight It Blue!!!

What No One Ever Told Me

You know....

... when you dream about having kids there are many things that you never think of.

You know you won't get a lot of sleep. You will probably be a little poorer in the wallet (but richer in the heart, of course).   Your relationship with your spouse will become different.  Your time will not be your own.  And of course, you know that you will change.

But there are some things... some specific things... that just never occurred to me.  Believe it or not, it wasn't autism.  That actually did occur to me.  Heck, I am an NICU nurse with multiple degrees in developmental psychology...  I am sure you can't even begin to guess the number of different things that did occur to me.   I promise you... I over thought the whole thing.

But boy, I missed some stuff.

Like Power Rangers.

Did you know there are 17 different Power Ranger series?  Not shows.... series!  Did you also know that you can get all of them on Netflix streaming?  Yes, you can.  And did you know that... if you watch them often enough..you might actually begin to rate your favorites?  Become involved in plot lines?  Slowly see your brain cells whittled down to the point where you actually keep watching it even when the kid has left the room?

So tonight I was hanging out with the J-man watching the newest series he has discovered (Power Rangers Wild Force), when a thought crossed my mind.

'Hey', I thought, ' I wonder if any of these actors ever did anything else after they were a Power Ranger?  I mean, all those Disney kids get contracts to eventually be in some movie... but the Power Rangers?  I don't think I have seen any of them go on to fame and fortune.  Is being a Power Ranger the kiss of death for one's acting career?'

I couldn't get this thought out of my head.  Big Daddy said "Google it", so I did.

Did you know that Wikipedia has an exhausting source of information on the Power Rangers?  And every Power Ranger actor there has been?  I found myself doing research about what other shows the Power Rangers actors have done outside of the Power Rangers domain.  I stuck mostly to my favorite series, Power Rangers Jungle Fury.

(Yes, I have a favorite series.  Don't judge!)

What I learned was that most of them went on to do other kids shows or some more B-rated stuff.  You know, the "straight to video" stuff.  But then, I discovered that my favorite Power Ranger,

(Yes, I have a favorite.  Weep for me)

Wolf Ranger RJ... aka David de Lautour..  is in the new Fox series Touch.  Which is coincidentally a show about an autistic child whose ability to see patterns gives him some kind of superhuman ability to predict the future. I haven't seen the show yet, so I have no idea if it is any good.  Anyhow...

And I feel like I have come full circle.

Then I realize I have spent a good chunk of time cruising the Internet looking up the career paths of Power Ranger Jungle Fury actors, and know that I really need a life.

Seriously.

Lord help me.

Highlight It Blue

So, I had this genus idea.  Dye my hair blue for April, which is Autism Awareness month.  In reality, it is because I am over 40 and want a reason to do something super funky with my hair.... Cause, you know, forty year old mommies can't just dye their hair blue for FUN.  

Autism Speaks has a campaign they do every year for Autism Awareness month called "Light it up Blue for Autism".  They encourage people to change the exterior lights of their homes to blue to display support and encourage awareness. 

Dude, we live on a circle.  We have maybe 6 neighbors who would see it.  Not enough!  Plus, how am I suppose to educate ANYONE on autism with a blue light?  Like someone is gonna stop at my house and say "hey, what is up with the blue light?".   No, we need something more "in your face".  Something I carry with me.  Something out of character.  

Blue hair. 

And one thing led to another and....  allow me to reveal my latest effort:

**************************************************

Highlight It Up Blue for Autism 

Creating Autism Awareness while looking Super Fly

Highlight It Up Blue is a local autism awareness campaign and fundraising event that we are looking to launch at the beginning of April.  

The Purpose:  Provide people opportunities to learn and educate about autism through sporting funky blue hair extensions for the month of April.  

How it works:  For a small donation to United for Autism, participants will have blue hair extensions placed in their hair by our volunteer professional hairstylists.  They will also be given education materials about autism, and be encouraged to spread the word about autism: what it is, how it affects children and adults, and how we can help.  We will encourage these participants to pass on the word by educating their friends, family and even perfect strangers about the purpose of their super-fly blue hair extensions.  

Who it is for:  Anyone!!  Old or young, male of female!  (well, I guess you do need hair?)  Let me know if you want to be on our email update list to participate!!!

Wanna help?  Contact me pia.prenevost@gmail.com  We are still looking to solidify a location for this event!  Volunteers welcome! (Super Fly poster draft done by Tahni Cullen.)

**************************************

As you can see, I am still in the beginning stages!  In addition to a awareness campaign, I have also decided to use it as a fundraising effort for United for Autism, a local group providing support to families dealing with autism in their lives.  They do education, seminars, and provide sensory friendly activities for our ASD loved ones.  How cool is that!  I am keeping it local, cause you know... that is how I roll.  But if you live elsewhere and want to blatantly steal my idea, go for it!!!  Wouldn't it be cool if there was a whole lot of blue haired old ladies (or men) running around in April?!  And by blue, I mean BLUE!


FEEDBACK PLEASE!!  Thoughts and ideas!!!!  Yes, YOU!

And for those who Doubted ...

... I present to you....

J-man reads "There's a Mouse in the House"





See.  I wasn't crazy or delusional.  Do NOT underestimate the J-man.

Glows

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”

— Paul Collins

"I saw the angel in the marble and carved until I set him free" - Michelangelo

Michelangelo could have used many methods to create his sculptural masterpieces. He could have taken a piece of marble, crushed it up into powder, mixed it with a combination of sand, cement, water, poured it into a mold, and TA-DA ....He could have made something like this:

But he didn't. Instead he made this:

He could have claimed that he created the angel out of the marble. But he didn't. What he says is that the angel was there all along. He saw it in there. He let the marble guide him, and in doing so he helped reveal what was there already. He didn't claim ownership of the internal beauty. He just helped set it free.

Did he have a hand in its creation? Sure. But if he had not respected the nature of the marble... if he not used proper methods and techniques and respect and care for that which nature provided... he would not have been the instrument in the creation of such beauty. Such beauty is not the product of ego or self focus.

It is the result of careful refinement of the senses to that which you are trying to reveal. It is about being sensitive to the nature of that which you work. It wasn't wood. It wasn't glass. It was marble, imbued with its own special properties... imbued with "marbleness".

Have you ever seen one of the true masterpieces close up? They glow. They capture the light in such a way that it seems like they burn from within. They are ethereal in beauty, as if God touched life into the stone. It is amazing to see.

When I think about raising a child with autism, I think of Michelangelo. I think of how he saw the angel in the marble. The beauty and truth of the child is already there, ready to reveal itself. The child is unique onto himself. You cannot look at the child and wish him to be other than he is. All you can do is see the true beauty that is the nature of this child. And with careful refinement of your own senses, you guide that child into revealing their very best.

That is what being child led is.

Imposing your will, imposing 'compliance', imposing your adult expectations and vision of what the child "should be" will only get you this:

But by following the child's lead, and by using your own sensitive engagement and guidance, you can help the child reveal their true essence. Their true beauty.

The neurodiversity movement stresses the idea that autism is not a disease. It is not an illness to be cured. Rather, it is a difference. A different way of seeing the world. A different way of being. And this difference deserves respect and understanding. I love this perspective, and yet I have often felt conflicted about it. How do I... J-man's neurotypical parent... help him learn to live in this world without trying to make him like his peers? How do I help him fit in and function here... in this world as it exists today? How do other parents of autistic children teach their child the ways of the world and how to make their way?  When the way they ARE is so very different? When their world can be so confusing and scary and fundamentally different than the one I understand and know...???

For me, the right approach seems to be the child led one. I will meet him where he is. I will appreciate his talents and excellence. I will sensitively understand how he sees the world (well, to the best of my ability) and I will hopefully be able to guide him to the next developmental step. I will allow for his quirkiness... cherish it even! And yet .... like all parents.... I will teach him how to channel his energy and communicate his thoughts.  Wherever he is at in the course of his life, he will know he is amazing.

And that he glows.

Blessings (A "Little Things" Post)

Hey!  I have been invited to take part in a blog meme by Lisa at Autism Wonderland called The Little Things are a Big Deal.  I thought this post might be a good place for me to launch!!!  So enjoy these little blessings and check out the other fine writers telling their big-deal stories!

************************************************************

I am in a pretty good place right now.

I am tired... nearly exhausted... but in a very good place.  J-man's autism doesn't bother me like it once did.  I don't feel quite so lost.  I don't feel quite so scared.  Or lonely.  I feel at peace with J-man, and therefore... by proxy... at peace with autism.

Not that we don't have struggles, cause we do.  Not that I don't get frustrated.  Cause I do.  But most of my frustration is about how hard J-man has to work to communicate and make his way.  And this boy works hard, my friends.  I am constantly amazed at what these ASD kids do every day, dealing with a neurology that challenges them at every turn.  And yet still they grow.  Little by little, inch by painstaking inch, they grow.  When you see it... when you hear the small triumphs that these kids achieve and know the efforts and barriers they go thru to get there...  I mean, come on!!!  How can you not be full-on inspired!!

I used to compare J-man to other neurotypical kids his age.  There came a point when I sorta noticed that I stopped.  I am not sure why.  Maybe the gulf was so wide that there was no point.  Or maybe it was because I refocused on comparing J-man to J-man.  What have been his developmental steps?  How has he changed from where he was to where he is?  What is better, or even just different?  What are the 'green flags' he is flying, and how can we build on those?  I live in that place, most days.  It is a good place to live.

Today, while I was in my bedroom getting dressed, I heard J-man on the monitor in his room.  He had his new book, There's A Mouse in the House, on his bed and he was reading it.  Word for mother-loving word.  As I was listening to him in his broken speech, I realized that indeed, he was reciting the story nearly perfectly.  I peeked around the corner into his room and there he was, using his finger to follow each word.  Was he actually 'reading' it?  Or had he just memorized the story?  I am not sure I care, to be honest.  He was 'reading'.  I was so excited that I fetched the videocamera and tried to get him to read it again.  Alas, it was not to be... but that was ok.  Instead, I got this little snippet of video that is classic J-man.

What you need to know about this video is this:  I believe that he is telling me about watching Netflix and Power Rangers.  He is telling me a story about that.  I think he might also be telling me that after watching Power Rangers we are going to Target.  Then I try and push the story thing (stupid adult agenda!)...  but not too hard I hope.  He tells me he loves books.  And that he wants a different one.  And that he wants to go to Target.




What you will notice is that there are times... many times... that it doesn't seem like he is really saying anything.  And maybe he isn't.  Maybe he is making noise to fill in for words that he knows should be there.  But I think... my gut tells me... that in his head those words ARE there, but his mouth cannot get them out.  So I treat all of his speech as intentional and deliberate.  He is communicating with me.  He is telling me something.  Even when he doesn't speak, he is communicating with intention.  I guess I believe all ASD people are.  We just need to be smart enough to bridge the gap to meet them halfway.

Progress in Pictures

What a difference a year (or two) makes...

Two Years Ago

Hated Santa

Last Year

As close as he would get

Christmas Party, This Year

He said "Hi 'Anta"

The Thinking Person's Guide to Autism

It isn't just a uber-famous website filled with insightful, well written commentary on autism.

It is now a book.  One review says of TPGA's book:


"Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person's Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum 
and those who love them."

-- Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the
Public Library of Science (http://blogs.plos.org/neurotribes/)


Sounds pretty sweet, eh? 


What if I told you that I was one of the contributors??  I know, right!?!?!?!  I am freaking out!!!  


I will admit... I haven't read it yet.  But I looked at the contributing authors list and was WOW'd!  Launch day is tomorrow, so if you are interested in reading some amazing work by some amazing people (oh, and something by me...  how did I sneak in there???), check it out on Amazon!


My copy is in the mail!!

The Making of a Gamer

Big Daddy is a gamer.  He was a gamer when I met him. He remains a gamer to this day.  And I can foresee J-man following in his esteemed footsteps.

The household Christmas present was revealed today.  Big Daddy bought J-man a Kinetic for the X-box Clearly, we already have the X-Box....  I mean, Big Daddy is a gamer.  Duh.  Kinetic is a extension to the X-Box that essentially allows the player to just wave their hand at the TV and things happen in the game. Kinda like the Wii, but with no controller whatsoever.  I am sure that there is more to it than that, but I am not a gamer so I am not sure I care.

What it does mean is that J-man can just move his body and play a video game.  He is in love with this sh*t.

His favorite so far is Fruit Ninja.

 Fruit Ninja basically involves hiii- ja - ing your arms frantically into space and magically the character in the game chops up flying fruit.  J-man learned the concept very quickly and managed, in one short hour, to beat the crap out of Daddy and me.... score wise, of course.

It is quite a work out!

  No real point to the story.  Just had to tell it.  We had honest fun.  Pretty sweet!

The Nature of Keyboard-ness

This is a piano.  

Wait...or is it a keyboard?

Or is this a keyboard?

What makes a piano a piano?  What makes a keyboard a keyboard? 

What gives something keyboard-ness?  Or piano-ness?

Pianos are:

* Often, but not always, made of wood.

* Tend to have legs, but not always.

* Have keys, black and white.

* Those keys make sounds and music.

In contrast, keyboards:

* Tend to be electronic.

* Have keys, but can have keys with letters, numbers, symbols, and or be black and white.

* Can be used to make sounds, play video games, amuse mommy on the Internet, make daddy be really serious on the phone or make music just like a piano.

So which word more accurately describes this object?  

One of the things I hate about ABA is that they seem to be as stuck and rigid in their protocols as some of the kids they are suppose to treat.   So, a little background on his program…

J-man is in an Applied Behavior Analysis-Verbal Behavior program with a "natural environment" component to it.  That means he spends a small portion of his day doing "table tasks" (i.e. discrete trial stuff) and the larger portion of his day playing in the natural environment and putting those skills to work. There are some benefits to discrete trial stuff, but I often have huge issues with it.  Indeed, I have been struggling with a love-hate relationship with ABA-VB.  Don't worry, I am working on a blog post... heck, probably a series.... about the pros and cons of ABA-VB.  But that is a major project... and I just want to vent about this one pet peeve.  Consider it a taste test of some future blogging moments.

Every day J-man has a little written note that comes home with him that documents what he did that day, things he is accomplishing in his program, and what he is still working on (or struggling with). 

 Lately, he has been stuck on the word "keyboard".  So here is the "problem" (and I use that term loosely).

During his 'table time' (ITT, or discrete trial time), he goes through various exercises that are fairly rote, not terribly interactive, and bent on teaching simple skills like labeling objects.  J-man typically kicks ass on all these tasks.  We are often told he masters tasks very fast, sometimes within a day or two of being introduced a task.  

He really isn't there because he can't learn, people.

Anyway, the last week or so we have been getting updates saying that he is getting stuck on the word "keyboard", and could we practice labeling it at home.  Our therapists explain that they show him a picture like this:

And instead of saying "keyboard", he says "piano".

And of course, because the curriculum calls it a keyboard, they have to get him to call it a keyboard.

Are you kidding me????

One of our (sweetest) therapists explained that if it was in the "natural environment" (NET), they would accept piano.  Well, of course they would!!!  Because in the real world if I called this a piano, you would probably agree with me.  In fact, you may even call it a piano too.  It may not even occur to you that it is also a keyboard because let's face it:

THIS is a keyboard for most of us.

This illustrates one of my biggest pet peeves about ABA.  There isn't an allowance for creative or critical thinking.  Piano doesn't count because it is during "table time"... and the curriculum says "keyboard"... he has to say keyboard to show he knows what it is.  

Are you fucking kidding me????

And at what stage, exactly, should a child developmentally be able to make this distinction?  Do they actually know this? And why exactly is it important??  It wasn't like he called it a flute, for crying out loud.  Or a pickle.  Jeeezz...

The meaning of words (semantics) is a language skill that develops over the first 10 years of  life.  The ability to understand that one object can have multiple names, and that those names are not always stand alone in the what they can mean, develops over time...and speech-language pathologists don’t even test for this skill until a child is over the age of 5.  So developmentally, the fact that J-man is selecting to use a word that frankly... in my opinion... is a more accurate description of the functionality of this object and is less confusing than the term keyboard to me seems.... I don't know... extremely appropriate.

But then what the hell do I know?

I am just a mom, right?

I Just Need This!

Would you like a little glimpse into what it like get J-man out of the house in the morning?

It is much like this scene from the Jerk.



I just need one more thing.... wait wait.... one more thing... wait, potty....

He moves about as fast too.

And he is often in this stage of undress.

Just thought I would brighten your day.

Cracked Poetry: An Ode to Stress

I am starting a new series:  Cracked Poetry.  Poetry about real life, real things, and real problems.  And it can be really funny too.  No poetry about trees or flowers or fluffy clouds need apply.  But if you want to write a poem about washing the dishes while your toddler tantrums on the kitchen floor, please do.  Please feel free to submit.  It doesn't even need to be good... 


To open the series, here is a poem I wrote last night.  Enjoy.


An Ode to Stress By Pia Prenevost

Stress is my bedfellow

He steals my pillow

And farts under the covers

Laughing as I gag.

Stress is my dinner date

He suggests pasta Alfredo

and cheesecake

Smirks when my jeans are too tight.

Stress is my lover.

He holds me too tight

He takes all my time.

He is jealous of my joy.

My friend says Stress is a dick

But she sleeps with him too.

Stress gets around.

Let's face it...Stress is a whore.

I should kick Stress to the curb

And change the locks.

But he is like a nail fungus

Impossible to get rid of.

**********************************

(Note:  In no way is Stress 'code' for my hubby.  Just so you know.  My hubby rocks!)

Negotiation by J-man

This is how J-man negotiates. 



If this isn't progress, I don't know what is.

PS:  If you can decipher the few words I am stymied by, you win a gold star!  All  reasonable guesses will be posted and open for voting!!!

PPS: "Noodles" refers to Mr Noodle from Elmo's World.  Mr. Noodle is a comic mastermind.  Just ask J-man.

A Normal Life and Other Crazy Talk

Photo by PaperWings Photography

A shift is happening here.  It is weird.  It is unexpected. Complicated.  A little frightening.

We are edging a little bit closer to normal. 

Egads!!!  Not THAT!

Not J-man, mind you... he is still his fabulous self!  He has gotten much more vocal, verbal, and opinionated, all good and frustrating things. His intelligible vocabulary is increasing daily, and his use/desire to communicate is happily expanding.  We are happy.  He is happy.  All is well.

"Normal" comes in the form of "what other people's lives are like".  As in... jobs, lifestyle, time, energy... all the crap everyone else does day to day.  You know, "normal".

"Normal" means we managed to find a babysitter.  In fact, not just one but TWO babysitters.  Two sisters who live down the street from us, who are young enough to still love playing with little kids but old enough to be responsible.  Two delightful young ladies who just happen to have a brother with autism.  Who understand autism.  Who get it.  I mean, seriously...

It is like hitting the babysitter jackpot. 

What this means is that now we do not have to rely solely on Mumu to babysit (which is good since Mumu & Papa are snowbirding this winter 1000 miles away).  It means we can have regular date nights.  It means we can make last minute plans with friends... go for dinner... laugh and have a few drinks... guilt-fricken-free.  And might I add, J-man adores them, and has from the first moment they came to the door.  Intuitively he just knew.  It might seem like a small thing, but it is HUGE.

"Normal" also means big changes in Mommy's department.  I applied for... interviewed...was offered... and accepted a new role at my work.  I am going to be a clinical educator in my unit, which is both a huge change and an exciting one.  I need to do this.  Now is the time and opportunity.  It is something I really want. 

And yet...

.. of course, I am a little nervous.  Or a lot.  Or is the word "freaked out"?  Not just about the job itself... I feel okay about that.  But what is going to be the effect on J-man??  I will be working a lot more.  He will start going to his program full-time now.  I have my concerns about that (to be addressed in a different post). Some guilt.  Or a LOT of guilt.  If all goes well, it will be wonderful.  If all goes sh*tty, then it is my fault.  Yeah, nice thought. 

Plus my house will probably become a disaster. Or more of a disaster than it already is. Big Daddy will have to take on some new duties which he says will not be a big deal but....  well, let's hope... All in all, though, not a bad problem to have.  Not bad at all. 

Of course, I am safe in the knowledge that J-man is unlikely to let our lives get too normal.  We will... no doubt... continue to let our freak-flag fly proud. I think that sounds just about perfect.