Wednesday, July 24, 2013

Our Documentary is to be Broadcast on ABC7 Los Angeles

We have received confirmation that our documentary short, Autism: Rethinking Family has been officially scheduled for broadcast on ABC7 Los Angeles.

It will be airing on Sunday, August 18th at 2pm. 

We hope that you can tune in, and that you will tell others to tune in as well. 

It's exciting.  A bit surreal, but still exciting :-)




Tuesday, July 23, 2013

California Special Needs Parents Please Read: Developmental Services Budget Trailer Bill, AB 89

ATTENTION CALIFORNIA AUTISM AND SPECIAL NEEDS PARENTS:

We received a letter from the company that provides our behavior therapy stating that as of September 1, the state of California, in the Developmental Services Budget Trailer Bill, AB 89 (passed and signed by the Governor in late June), has mandated that the regional center program will no longer provide financial assistance with co-payments and coinsurance to cover the cost of therapy-related services, unless the family is at 400% or less of the federal poverty level.

This means that as of September 1st, 2013, you will be responsible to make all the payments for services provided that are not covered by either your insurance or the regional center. These payments include, by not limited to, your deductible, according to your plan and your co payments or coinsurance, according to your plan.

Families have the option to file an appeal with their regional centers.

It is strongly recommend that you discuss this matter with your service coordinator to better understand your eligibility.

Here is a link you can access to find out where your family falls according to federal guidelines. 


The federal poverty level for each family size, and the percentage columns that represent income levels that are commonly used as guidelines for health programs.

Please share with other special needs parents you know in California.

This stuff never ends...

Thursday, July 18, 2013

"Somewhere, She Learned to Read..."



Elena  is reading. 

Somewhere, she has learned how to do it. 
Phonics, single-word recognition, comprehension...it's all at work here. When she began going to school she was almost entirely non-verbal, with severe language deficiencies. She still has major pragmatic language deficiencies and has trouble putting sentences together to express her thoughts but, she is reading. 
She can read!

I don't believe in miracles, but I believe in miracle workers. And a whole lot of work from numerous workers went into this miraculous little achievement.


Wednesday, July 17, 2013

Five Twenty-Two: A Photo Blog

The Afternoon Project
Just home from summer school
Six months in the closet
Out of sight, out of mind?
Not really...
We'll do it, but we need to follow the directions...
In the meantime, read the box...
We begin...
Finding instruction book

Where in the .... is 2?
We are organized...this time
Gotta put the figures together first...
So far, so good
added the seat
first part is done


Trees...
trees on fire...

A reading from the Second Book of Lego Fire Plane

Making the Plane






Last bag



finishing touch
We got a fire plane!



Almost bed time
522 pieces of little kid summer time joy


He was awesome.  Six months ago, when he got this at Christmas, it would have been a multi-meltdown disaster to attempt this.  Now, with much prompting, guidance, and many reminders to work one step at a time, he did it.

Dad helped.

So did this.

10 Commandments of Behavior...Intervention

Monday, July 15, 2013

She Can Hear the Universe: Sensory Dysfunctions & The Audible Range of Human Hearing

“Judging is preventing us from understanding a new truth. Free yourself from the rules of old judgments and create the space for new understanding.”
Steve Maraboli, Life, the Truth, and Being Free

During our "managing behavior" autism parent-mentoring courses we learned that eighty-percent of the human population has some level of sensory dysfunction.  Many of us are sensitive to bright light, or certain scents, or the feel of certain material on our bodies.  Many of us wear glasses and hearing aids to correct our dysfunctions in order to achieve as near-to-normal visual and auditory sensory state that we can.  Some of us don't like to be touched.  A few of us have synesthesia - a cross sensory transfer of information, enabling some to taste smells and see the colors of sounds, and other cross sensory sensations.

Mozart
For some, their sensory dysfunction is a gift.  If you read anything about his life, Mozart was, arguably, autistic, and likely had a heightened sensory awareness of some sort. I'm sure many creative artists and other abstract thinkers throughout history were on the spectrum, able to overcome, in some way, the often difficult existence that living with sensory dysfunctions can be.  Is it such a leap to consider that such notable figures as Picasso, Emily Dickinson, St. Teresa of Avila and John Lennon might have been on the autism spectrum?

For others, particularly autistic children, their sensory dysfunction can be a terror and anxiety inducing curse. The biggest and final realization I had that Nicholas had severe issues that needed attention was when we were trying to have dinner with friends at the Rainforest Cafe in Downtown Disney.  As we entered the very popular restaurant, he wouldn't, and began having a classic autism meltdown.  So, like typical parents we just picked him and carried him, thinking the fun ambiance and cool decor and lively colors and rainforest sounds would be enough of a fun distraction for him to settle in and enjoy being there.

Of course, the effect on him was the total opposite.  It made it far, far worse.  Popular meant overly crowded.  Fun ambiance meant very loud.  Cool decor and lively colors meant overwhelming visual stimulation.  Rainforest sounds meant unfamiliar, dissonant noise.  Looking back, he was absolutely terrified.  Jill lifted him and carried him out, leaving our friends and their typical kids behind.  As we walked back to the car, I could see his sobbing cries of despair gradually transforming to sighs and heaves of relief.  Seeing that change in him, at that moment, changed me  -- forever changed me.

He was three at the time, and had previously displayed discomfort and anxiety in certain situations, like entering into public restrooms or a new "place" or loud enclosed area, often leading to meltdowns.  At the time, prior to the autism diagnosis and my autism parent training, I thought he was just having another tantrum because he was doing something he didn't want to do.  I look back at that time and kick myself, wishing I could have, would have been more aware of what he was going through, instead of relying on what was modeled to me by my parents, which was to chastise, and make him deal.

That's how I was raised.

It worked, on me.

Do you want to hear a good one?

Elena has it worse..


She is, at times, an absolute prisoner to her sensory dysfunctions.  She is extremely sensitive to sounds, particularly to police/emergency vehicle sirens.  She hears them before anybody else can, picking out that sound within the cacophony of urban L.A. noise even if the siren is a mile away.  It physically pains her, or so it seems.  We don't really know.  She's doesn't say much.  We are only guessing it hurts.  It looks like it does.

Here are two online "hearing test" that I think would be fun and interesting for all of you reading this to take, right now, before reading any further.  Can you do that for me?  One takes about two minutes, the other about five.  It's fun.

Be careful though!  Don't put the volume of your headphones or speakers up too loud.  In fact, set them just below your normal setting.   If you are a typical human, you are not going to hear a lot of the tones in the beginning.  So don't put it louder!  When you do hear one, you'll know. 

The Audible Range of Human Hearing, 2 minutes

The Audible Range of Human Hearing, 5 Minutes

How did you do?

Nicholas can hear every tone on the two minute test - lowest to highest, easily.  He is autistic and it's hard to know for certain.  Still, when I played this he immediately asked "Dad, what's that noise?" when I wasn't hearing a thing.  Turns out I am incredibly normal.  Though I do think I've suffered hearing loss due to my years living in New York City, because, of all things, police and ambulance sirens.

I am trying to figure out a way to get Elena to listen to these.  Honestly, I think she's is far more sensitive than him.  I am convinced she hears way beyond what most typical humans do.   She is plagued by unknown sounds -- unknown to us anyway.  The fact the he is her brother has convinced me she isn't any different. 
Full color sound spectrum of our very early universe
We joke that she hears the universe, but we may not be joking.   

The Sound of the "Big Bang" 

There are moments in our lives where she is suffering and we can't figure why.  I think it has to do with her hearing.  I have found her lying on the floor in the bathroom, in the dark, moaning, biting down on a chew toy and plugging both of her ears.  And there is no audible, unsettling sound  that can be heard.  No sirens.  No aircraft.  No motorcycles.  No children screaming or babies shrieking.  No electronic devices.  Just normal every day sounds.

It has happened not just in our place here in the big city, but in small towns, at the beach, out on walks in the woods, indoors and outdoors as well.  When she does this and there are no other sounds happening that the average human can hear, that her above average brother can hear, then we are at a loss.  And all we can do is try to redirect and comfort her.  She usually comes out of it on her own, which must mean whatever she heard has subsided.  I don't know.  

It is said that there are "sounds" in space, like the sound of the solar wind, and maybe she can hear those sounds, those echoes of space and time that we mere humans are not capable of hearing.  I don't know.  I am just speculating, rather imaginatively, of course.  I don't know if we will ever know what she is experiencing, what she is hearing, and how it makes her feel.  But that is what living with autism is like, for us.  Often, particularly with Elena, it is just one big mystery...

On the flip side, she can hear a song for the first time and, if she likes it, can instantly harmonize in perfect pitch.  And that's living with autism, too - realizing the strength within the apparent weakness, seeing the silver lining in that dark cloud of her reality, and figuring out a way, always trying to figure a way, to make it better.