It's Honest Art

A few weekends ago we attended a party that was very near to a mountain brush fire.  It was an outdoor gathering, and Nicholas and Elena were able to spend most of their time in the pool.  The fire was about one mile away, due south.  We were in no danger but with the helicopters and fire planes flying above us, and the smoke cloud growing bigger and darker, and the general excitement in the air, it  made a huge impression on our boy. There was a lot of sensory input for him to process, and a lot of excitement and curiosity to work through.  He was anxious to come home and draw a picture.

One of the ways he is discovering that he can process his thoughts, feelings, passions and perceptions is through drawing.  For him, it's more than just a fun activity.  It's a means to connecting to parts of him that he is not able to connect to in ways more typical people can.  

For him, drawing is more than just making pictures.  It is an expression of his inner being.  He is verbal, but has difficulty in pragmatic language expression and usage.  He can talk, but it can become more like monologue than dialogue.  He is often at a loss for words.  His drawing is an extension of his language.  His perception of his world through the filter of his thoughts, his emotions, his level of understanding, without the burden of speaking. 

It is reactive.  It is immediate.  It is vibrant and full of action and drama.  It is a highly personal response to the reality he lives in.  There's a lot going in, and he usually fills the frame with action.  There is no subtlety, only a seven-year old autistic boy's visceral truth.  It's honest art.

He reminds me of Picasso, and not because he's my son and I think he's a great artist.  He reminds me of Picasso because of the strength of intent and need to create he shares with him.  He usually draws something everyday.  And it's usually a reflection of his current passion or obsession.  And it's always about what he knows and how he sees it.  And that, to me, is very Picasso-esque, in spirit.

I think we may have actual artist on our hands. 

http://www.pablopicasso.org/guernica.jsp

Cognitive Dysfunction is a State of Mind

I don't know any parent who is okay with hearing that their child has a cognitive dysfunction - cognitive meaning relating to, being, or involving conscious intellectual activity (as in thinking, reasoning, or remembering).  It's not the reason why you have children, so that they can have and you can deal with a cognitive dysfunction.  It is not what you hope for and envision. In fact, it's the opposite.

According to the trained professionals who work with our children at school, they both have a cognitive dysfunction.  It is based on their lack of awareness for the recent past and near future, especially Elena.  Apparently, it stems from their condition   And it is a cause for concern.

It's true.  It's an accurate diagnosis.  It is who they are and what they do at this point in their lives

But, is it really a cognitive dysfunction?  Technically, medically, yes, it is.  If one accepts the standard definition and  parameters of the meaning of "cognitive," which really means based on or capable of being reduced to empirical factual knowledge.  Within those parameters of factual knowledge is an ultra-harsh reality imposed upon you and your child by the Establishment, the entity that says this is reality as we define it and how it will be.  Beyond those parameters, beyond the Establishment, lies hope.  When living with autism, one learns to move beyond the parameters of the Establishment.  When living with autism, one moves into the parameters of Hope.  And hope, like faith, is beyond the empirical.

So, in the parameters of the Establishment version of reality they struggle with the empirical facts of the past and the potentialities of an unknown future, and suffer from a cognitive dysfunction.  In the parameters of Hope, they care not about the concept of past and future because it is of little importance, as they are about existing in the present, being in the Now, and living in the moment.  In the parameters of Hope they do not suffer from a cognitive dysfunction.  On the contrary, they are advanced beings.

I read, I research, and I gather and assess a wide variety of philosophical and spiritual works and esoteric knowledge.  Living in the NOW, being in the moment, experiencing life in its immediacy is the way of the Buddha, the path towards Nirvana, which is the way to Oneness with Creation, towards universal consciousness which is an ascension of this third dimensional existence.  In that aspect, they are the embodiment of their I Am presence, which is divinity manifest on this earthly plain.  They are not on a path towards enlightenment.  They are enlightenment.  The Kingdom of God is within them.

Still, with one foot in this reality, they have to know and understand the recent past and near future.  It's a safety issue, especially if they injure themselves or have a harmful experience.  They have to be able to explain "what happened."  Similar concerns with understanding the future, "what will happen if..." and "what to do if..." are major issues to understand in our society as it is today, as we are very past and future oriented.  So, I get it.  I, and their teachers and therapists, will teach them to get it, too, so they won't have to struggle as they live out their lives on this limited, empirically-driven third dimensional existence.

However; I often wonder, is it they who are struggling with a cognitive dysfunction or is it we that are suffering through a type of cognitive dissonance from knowing, inherently, that what is most important is the present moment while continuing to foolishly cling to a nostalgic past that we rewrite in our minds to suit our present circumstances in the hopes that our future plans based on our  revisionist past will come to fruition when deep down we truly do not know what the future will be?

Are they hoping we can move our minds, our souls, into existing in the Now, in the present, just like they do?  

Are they politely waiting for the rest of us to evolve to their level?

Are they here to teach us, rather than us being here to teach them?

Why pretend to know the future when nobody can and why hold onto a past that we cannot change?  It's a lot of wasted energy we might be better served putting towards experiencing the moment. Yet it is what we do. 

Would they diagnose us with a Dysfunction of Consciousness, with a Dysfunction of Truth?

Would they care to even diagnose us at all?

I am not convinced they are suffering.  When left alone, they're very happy.  I am more convinced that we are suffering because we are failing in our need to make their lives more like ours, rather than make ours more like theirs.  And that's a cognitive dysfunction of the highest order.

Imagine a life lived where all that mattered was in the beautiful moment you are experiencing.

Imagine all the people, living for today...

Dysfunction is a state of mind. 

So, what's the state of your mind?

We Are All Significant

It is in the doing that we discover what the significance of our doing means. 

It is in the practice that we discover the secrets of our perfection. 

It is in the mastery of our craft that we discover the genius of our art.

It is knowing the part fits into the whole and the whole is incomplete without the part. 

It is realizing we are both the part and the whole.

By doing, we discover our perfection, and by practicing the mastery of living, we become the genius of our art. 

We are all significant.

We are all complete.

Almost Normal

It's days like this one, out in the world, that two years ago would have been out-of-the-question.  With much intensive therapy, guidance and parent training, we are getting to a place most typical families have usually taken for granted.  It's almost normal.

There is light at the end of the tunnel, but you do have to climb uphill everyday a bit to get there. 

Or, you know, take the escalator.

When all is said and done, it was a typical Sunday in the City of L.A.

Autism style...

All About Hope

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.
 ― Emily Dickinson

One of the common responses I get from strangers when I have to explain that they are autistic goes something along the lines of, "They must be smart then." 

Hmm...  

Nicholas is doing very well academically. He came home with a "Math" medal a few weeks back, to add to his "Art" medal. He rarely has a wrong answer on his weekly tests, both math and spelling.  He usually gets 100% on most of his work. His reading level is phenomenal, freakishly so. He is doing okay in that regard.

Elena is Pre-Kinder, so she doesn't get tests or even much homework yet, but today I found her quizzing herself on one of the Mandarin apps I downloaded for her. It was verbal recognition of numbers from 1 through 20. She had to listen and then chose the number she heard among seven choices. She got 32 out of 35 correct. I find that very interesting.

So, yes, I suppose they are.

 
Please don't think I am bragging. I'm not. We have had some rough days the past month or so,with some really rough episodes.  As I have posted, it's not always beautiful.  I just don't want to dwell on those more difficult issues at the moment.  In this moment, I just want to celebrate our victories, and inspire a little hope.

There will be plenty of hard moments to share yet to come.  We are a family living with autism, after all, which means we are very much a work-in-progress, and all about hope.

Hope is a waking dream.
 ― Aristotle

We Just Keep on Dreaming

People stop and stare at me.
We just walk on by.
We just keep on dreaming

I was the parent who got to take our daughter to that fateful appointment with the psychologist who made the initial diagnosis of autism.  I don't know if there is a true way of expressing the feelings that moment brings for those who will never experience it.  I am sure there are similar experiences we all can relate to in some way, but that one is particular to parents of autistic children, and comes with all the yucky baggage we all have heard about the last decade or so that such a life-changing diagnosis brings with it.  In our case, Jill got to be there for our son and I got our daughter.  That's just how it worked out. 

I wasn't surprised, that's certain.  We had suspected we'd get that diagnosis.  There were just too many similarities with her brother.  In her case, some of her issues were more severe than his, so it was a bit more obvious to us that we had something interesting on our hands.  Having gone through it all with her brother just a few months before made it less traumatic as well.  Still, to get the diagnosis is a memory you never forget.

As we were leaving the Westside Regional Center parking lot, I put on our MP3 player.  It was on shuffle.  As I drove out of the parking lot I was looking at my happy, beautiful and carefree little girl in my rear view mirror.  The mid afternoon sun was gently caressing her face, basking her in a tender glow of peace and joy.  Then it hit me then, real hard, that her life wasn't going to be the life I had wanted her to have, planned on her having, and thought she would be having.  I realized she was no ordinary little girl.  That she was different.  Special.  Truly one-of-a-kind.  And it wasn't going to be easy.  And that I was her dad.  I'm her dad.

Then this song came on.

Nine years prior to that moment I had a remarkable moment of personal connection with Debbie Harry, rock goddess and legendary icon of early alternative pop,  It was during the days following September 11, 2001.  I was in New York, working for a theatrical talent agency in an office that was very close to Ground Zero.  We were called into work for no other reason than just to go into work.  Looking back, nobody else was working, especially in theater and especially in such close proximity to the actual event.  I was answering the phones that day.  When they did ring, it was very surreal.  Nobody expected an answer.  When I picked up, people on the other end felt suddenly compelled to express their sorrow and anguish and heartfelt wishes of love and luck, and I had to listen to them, and thank them, and take their message.

One of the callers was Debbie Harry.  I knew right away because the first words out of her mouth were, "Hi, I'm Debbie Harry!"  She was calling to speak with one of our agents because one of our more aggressive playwrights had sent her a script, asking her to be in a reading, unbeknownst to anybody in the office.  She was calling to say she was flattered but would be away at the time they wanted her.  I said I'd pass on the message and was ready to thank her and end the call when she unexpectedly asked me how it was going, how I was doing.  Next thing I knew, I was having a wonderfully warm and sincere conversation with Debbie Harry - Blondie - rock legend - about the events of 9/11 and the immediate aftermath we were both going through.  I remember it like it was yesterday.  It was a very real and personal moment of connection between two people, strangers, yet not...not really strangers at all. 

Flash forward nine years and there she was again, Debbie Harry, sharing perhaps one of the most personal moments I will ever have, and making it better, easier, and real.

I got reminded of this today as I was with Elena at our local park and then our local Trader Joe's.  She was having, what we call around here, a "heavy autism" day.  A day when she exhibits some of the more severe symptoms of her condition in more severe ways than usual. Those are some of our most difficult days.  Today was rough. It was just the two of us out in the world, which makes it even tougher.   It was the kind of day when we get glances from strangers, looks from other kids and outright stares from parents and other caregivers. 

We just walk on by.
We just keep on dreaming.

On days like today, with the stares, the meltdowns, the whispers and looks, the odd encounters and uncontrollable reactions, bizarre behaviors and sensory dysfunctions, I get taken back to the moment in the car, as I looked at her in the rear view mirror, and this song came on, and tears were streaming down my face, and I realized at that moment, that for us, that dreams are what we got, dreams are what we have, and that we have a lifetime of dreaming before us. 
  
Imagine something of your very own
Something you can have and hold
I'd build a road in gold 
Just to have some dreaming

Dreaming is free...

Autism is a Wonderful Color

Three boys, all classmates, all Latino, all autistic...having the time of their lives.

Mariquita Saturday

Enough said...

An E Ticket Experience

The autism experience is not always beautiful.  Sometimes it is very ugly.  There is a beauty in its mystery, but there can be lots of ugliness as it gets played out in physical reality.  It's all about the moment.  The moment you are in.  The Now, as they say in some circles.  Days can be full of enormous highs and devastating lows, from hour to hour, sometimes minute to minute.  Pick a moment, it will be something.  In the autism experience, all moments are something.

It is the cliché of the rollercoaster ride, only you don't get slowly pulled up with that familiar "clank-clank-clank" sound as you approach that first long drop.  With autism, suddenly getting out of bed is the initial drop, and that clanking sound is the thump of your tantruming two-year old leaping out of his crib again at 1am or the hard footsteps of your insomniac three-year old daughter with a history of mouthing and eloping, awake and cruising around the house unsupervised at 2am or crying screams and peals of unknown anxieties from both of them at 3am. 

Like a rollercoaster, the autism experience has lots of fast curves, only you don't see them coming and they're not very fun.  And there are lots of screams, only yours are coming from frustration and anger and not from the excitement of that kickass loop.  If you scream too much on a rollercoaster people just laugh at you, but in the autism experience if you scream too much the neighbors complain, the landlord comes to talk to you and the cops show up. 

Unlike a riding a rollercoaster, though, there is no end to the autism experience, no time to catch your breath before coming to a stop and no platform to step up onto that will take you to the nearest exit.  There is no exit.  You are on it forever.

Every family can relate; I am sure of that.  All family units have their up days and their down days with lots of fast curves and wicked loops and flying turns in-between, living the autism experience or not.

I think the difference is that even as much as we try to establish routine, keep schedules and maintain a type of family normalcy, it's always unpredictable, always on the edge of collapse and breakdown, without precursors or triggers, even when we are mindful of potential precursors and triggers, and even when it is seemingly going well.  We do our best and our best has gotten to be pretty good, all things considered.  It's controlled chaos.  It is Theater of the Absurd, only lived.  It is real-life episode of Monty Python's Flying Circus, incoherently happenstance yet truthfully connected.  It's a crazy ride, and if the lapbar is up and you're not buckled in, centrifugal force might send you flying out. 

When I was a little boy, long before FASTPASS and the ride-anything -you-want-till-you-puke policy, Disneyland still had the ticket system, and the "E" ticket was the one that got you into the best rides.  You only had a few of them in your packet, so you had to choose wisely which really cool E ticket ride you wanted to go on.  You always had to make a sacrifice, too, and that was always tough.  Were you going to skip the Jungle Cruise, The Haunted Mansion or Pirates of the Caribbean?  It was a yearly rite of passage for L.A. and Orange County kids fortunate enough to go there.  I guess we were all supposed to learn something from doing that.

In the Disneyland of Life, I don't know if the Autism Experience would be an E ticket ride, but it sure as heck isn't the Main Street Horse Car either.  It would be a really short line though.  And as far as thrills go, you would certainly get your money's worth.  And it lasts a lifetime, literally.   

So given the choice now between riding the Autism Experience and all the other E ticket rides, I would sacrifice The Pirates of the Caribbean.  It's certainly more exciting than Pirates since they added that mindless Jack Sparrow stuff.  It's just as dark and at bath time, just as wet.  In the Autism Experience we get to look at other people's money as we financially float by.  We sometimes see ghosts, of the past and present (I do anyway), and we always avoid getting into serious trouble as fires rage and the world crumbles around us. 

So, yeah, the Autism Experience is definitely a ride that could be interesting and fun to take with the right mindset.  I mean, what the heck, I might as well; I'm on it already anyway! 

Here's my E ticket!  It's my last one, too!

Maybe I did learn something, after all.  

Thank you, Disneyland!

The IEP Meeting: We Just Want Our Kids

The IEP meeting is an annual occasion for most parents of a child with a disability.  "IEP" is short for Individualized Education Program.  For many parents, it is a dreaded event, which causes much tension, anger, anxiety and disappointment, and can be a long, drawn out ordeal.  We recently had our daughter's IEP and today, because their birthdays are only two weeks apart, we had our son's.  It marked our seventh IEP meeting in three years.  And for the seventh time in a row, we had a very good, helpful and encouraging experience.  

Autism is a disability.  The IEP meeting is required by federal mandate through the "Individuals with Disabilities Act," so it needs to happen, usually around the child's birthday.  The IEP meeting is attended by the professionals who are working with the child through the school district.  In our case, it has been their teacher or teachers (both special education and general), their speech therapists, their occupational therapists, the school's assistant principal and, in past meetings, their adaptive physical education therapists.  As a parent you are encouraged to take an active role in the process.  With that in mind, and with advance notice, you are entitled to invite other professionals and advocates to attend on your child's behalf as well.

In a very quick nutshell, the goal of the meeting is to determine for the upcoming academic year the goals and objectives for each child and to produce a written document that states those goals and objectives, and the services that will be administered to attain them.  The past year is reviewed, data and reports are presented and assessed, and goals and objectives are discussed for the next year which usually allows for other issues to be addressed.  If all goes well, we, as parents, and they, as educators and professionals, come to an agreement.  Documents are then signed or given to the parent to mull over for a few days and then sign, or if there are disagreements, to meet again for further consideration, often with lawyers.  

I don't know if we've been lucky.  I don't know if our expectations are different than other parent's expectations.  I don't know if we're just easy to please.  I don't know if our attitude going into the meeting makes a difference.  I don't know if being educators ourselves makes a difference.  I just know that we've always been given services that have been obviously needed and put into very good programs with excellent teachers and highly-qualified professionals who have nothing but the best interests of our children in their minds and hearts. 

If we didn't see significant growth and positive improvements in every aspect of their lives, we would have something to complain and haggle about.  But we do.  We see the hard work of many dedicated people paying off in huge ways.  We can take a metaphorical step back and say, yes, from last year at this time to today, there's been tremendous growth, and more than we could have imagined.  As I am wont to say, I don't believe in miracles, but I do believe in miracle workers, and we've been blessed to have them working their magic on our behalf. 

We don't expect the world.  We don't want it.  We just want our kids.  And that's what they've given us.  We have our kids.    

For that, we are very grateful.

Elena Awareness vs. Elena Acceptance

April 1st is the official beginning of "Autism Awareness Month."

Others say it's the official beginning of "Autism Acceptance Month."

Awareness…?

Acceptance…?

(Sigh)

You know, I'm a dad with two autistic children.   

I really don't have the time or energy to figure it out.

For me, what's really important is that April 1st is my daughter's birthday, and today she is five-years old.   

She is beautiful, intelligent, hilariously funny, musical, fun, happy, playful, sensitive, and full of charm, warmth and grace.   

She is my light in times of darkness.  

She is a hug in times of stress.  

She is a smile in times of sadness. 

And I love her more than Earth.

Whether you are aware of it or not, she is definitely autistic, and you should just accept her for who she is. 

 
It's easier that way.