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!

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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.

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