Dancing "Gangnam Style" at Spring Fling 2013

Our first You Tube video.

Nicholas and the entire first grade at his elementary school dance to "Gangnam Style" at "Spring Fling 2013" - his school's annual end of the year all school dance show.  Taken on our iPad.

He's actually a pretty good dancer.

He gets it from his mother.

Looking for mom and dad

Still looking

After we've been found

Watching his friend in the 3rd grade dance

Just making sure we're still there.  The fact that he waited so patiently was wonderful!

Finally ready to perform

Sees me with the camera and the iPad

"Gangnam Style!"

Intensive In Home Behavioral Therapy Can Sometimes Be at the Park

Once in a while, especially if our therapists have make up hours to complete, therapy can happen on a weekend, and it can happen someplace other than home.  We have many goals to meet and issues to address, and even though this looks like too much fun for therapy, much work is getting done.

Compliance
Safety Awareness
Sensory Integration Patience
Cooperation
Sibling Play (they don't play together)
Physical Therapy
Listening
Control issues
Social skills
Asking
Using your words
Taking turns
Anger management
Proprioception awareness
Kinesthetic awareness
Fine and gross motor skills
And so much more...

We love our therapists.  And even though this looks like fun, and it is fun, they have worked very hard on our behalf, accomplishing more than we ever thought possible.  We are so grateful to have them in our lives.  They are family now.

Acknowledge, Feel, Release

This afternoon, towards the end of his intensive therapy session, Nicholas sat down to draw and spontaneously began processing the tragic events from the devastating tornado in Moore, Oklahoma earlier this week.  He was exposed to it mostly at school, of course.  We just don't watch much TV any more.

To be honest, Jill and I tend to detach from most news cycles, even this one.  Living with autism pacifies the urge to become involved in the day-to-day drama of current events - this coming from a former "news junkie."  We stay informed about local and world events but don't give them much emotional attention anymore.  Autism has taught us to put our energies where we need to have them.   

Acknowledge
Feel 
Release 

That is the new life mantra for me.  At least, it's the new life mantra I strive to maintain, with much mindful effort.

It's ironic that he has been learning about severe weather in his high-functioning K - 2nd grade class the past few weeks.  Thunderstorms, heavy rain, hail, lightening, strong winds, and even hurricanes have been part of his homework assignments.  He has become obsessed with "tornado sirens " begging to see images of them on Google, and asking us over and over again, "What do they sound like?"  In a sense, he was primed as much as a very bright, autistic seven-year old boy could be for this tragic event.  Perhaps it was a blessing. 

I'm not entirely sure how much he gets in terms of the loss of life, at least, the significance behind the loss of life.  He understands death.  He was with me on the day my mom crossed over.  He was three.  He put his forehead to hers as I told him to say goodbye.  He knew she was leaving.  

He does feel the severity of the effects of the devastation, which makes me think he knows exactly what happened in Oklahoma this week.  The old thinking was that autistic people didn't feel anything.  Some of the new thinking proposes that autistic people actually feel too much.  I'm with the new thinking.

Acknowledge
Feel 
Release 

Maybe he gets it already.

The tornado siren sounding the alarm.

The storm approaches.

The event.

The devastation.

IQ Testing Underestimate Autism Spectrum Intelligence

Autistic people have always been short-changed when it comes to accurately assessing their "intelligence" on the standard, typical IQ test. The scientific, cultural and artistic contributions from those with autistic minds throughout history are amongst the most profoundly brilliant, insightful and creative works ever produced by humankind. It is more than time we acknowledge and accept this fact and stop trying to force beautiful square pegs into round holes when, in reality, there are no holes. 

IQ is nothing but another inconsequential number in a life burdened by the weight of inconsequential numbers.

http://psychcentral.com/news/2011/10/03/iq-testing-underestimates-asperger-autism-intelligence/29999.html

Deaths of 3 Autistic Children Call for Better Anti-Wandering Protocols | Child Mind Institute

In light of  recent drowning deaths of autistic children who had wandered away, I feel compelled to share this article from the Child Mind Institute. Nicholas tended to wander off.  He has gotten better  Elena will flat out wander away if we are not constantly aware of her whereabouts. We barricade our door nightly, just in case she gets up in the middle of the night and decides it might be fun to go outside. As she gets older, and we address these issues in therapy, we hope we can no longer concern ourselves with this. In the meantime, awareness is all that we ask.

Deaths of 3 Autistic Children Call for Better Anti-Wandering Protocols | Child Mind Institute

ARTism...

When Elena began her special day preschool mixed program a little over two years ago she couldn't grasp very well, if at all.  She would eat with her hands, always.  Coloring and scribbling were not activities she could engage in.  Holding a pencil or crayon was nearly impossible.

So when Sheila, her intensive in-home therapist, took out a ceramic painting set from our toy cabinet during her session and asked me if it would be okay if Elena painted I said, "Sure, she can paint!" but inside I was screaming "Why in the hell do we even have that!?!"  We have let her paint many times, with watercolors, and it is usually a puddle dripping disaster of colorfully epic proportions.  She has fun though, and that's what is important, right?

To be honest, when it's just me at home, I have tended to hide the watercolors from her, or I tell her that we could paint later on or tomorrow, which never happens.  I mean, seriously, the mess she can make is downright FEMA worthy. As Sheila set her up and I got her some water to clean her brush, I just kept thinking, "This is just going to be a huge freakin' mess..."

She is a master preschool finger painter.  I have an online store over at CafePress.com called Autistic Endeavors where I have various items available for purchase that feature artwork by Nicholas, me and Elena.  (Autistic Endeavors website)  Several items that feature her "art" have actually sold, not only to friends and family but to random people across the United States, especially the finger paint projects she has brought home from school.  We ain't making money off this.  It's more about raising awareness.

She comes by the creative impulse naturally.  My family is full of starving professional and nonprofessional visual artists and artisans, including my older brothers and sisters, and my mom and dad, and my nieces and nephews.  Even I've sold a few of my digital photo art pieces, in postcard, greeting card, magnet, framed print and shower curtain form.  Jill is very creative and artistic, as is her Uncle Maurice, a professional theater artist.  Her mom is a brilliant needle point artist and creative home cook.  Art is what we do.  However; using your fingers to paint and your hands to stamp and stencil are not the same skill set it takes to actually hold a paint brush.  Particularly since Elena could hardly hold a spoon two years ago.

Sheila quietly sat down with Elena.  I was at the computer, emailing the White House for disaster relief aid.  Okay, I exaggerate, although it was quiet.  Too quiet.  It was so darn quiet that I finally glanced over and saw one of the most beautiful sights this ASD dad will ever see.  His child fully focused, engaged, having a wonderful time, with a great and beaming smile on her face...and hardly a mess in sight.

What else is a dad to do but take pics?  That is over two and a half years of intensive occupational therapy at work.  Let us celebrate what so many others take for granted.  And cherish the small triumphs as we experience them.

She Just Keeps on Dreaming...

Or is it spinning?

She loves to dance. 

And she never misses a beat.

We Are Us...

We are a family of four.

We live in Los Angeles.

We are educated, both with graduate degrees.

We are working class, both born that way.

We qualify for assistance from the California Regional Centers.  (What's this?)

We are a culturally mixed family. 

I am Latino.

Jill isn't.

Nicholas is seven.

Elena is five.

Both our children are considered to be somewhere in the moderate range on the spectrum, with a number of severe behavioral issues.

Elena displays more traditionally classic autism symptoms while Nicholas displays symptoms that are more like that of Asperger's Syndrome, even though he is clinically diagnosed as "autistic."  Essentially, it means she is nonverbal and keeps to herself while he can, more often than her, talk about the same things, over and over and over again.

We feel they are very intelligent and bright.

And really funny.

Nicholas was diagnosed soon after his fourth birthday, but we began the process of getting him diagnosed right after he turned three.  It took a long time.  It felt like a lifetime.

Elena was diagnosed at two.  Her process went faster.  We knew what to do.

Ironically, he was diagnosed first by our school district, and later by the Regional Center.  She was the opposite.  Getting an autism diagnosis from your school district doesn't mean the Regional Centers automatically accept their diagnosis.  You have to get a separate diagnosis from their team of psychologists to qualify for Regional Center services.  And vice versa. 

Nicholas was in a special day collaborative class (What's this?) where he was one of five children with a high-functioning disability.  For the past two years he has been enrolled in a kinder thru second grade program for children who are high-functioning autistic.  He is mainstreamed half the day. (What's this?)  He will attend the same program next year, as a second grader.  He takes the bus to and from school everyday.  It is part of his IEP. (What's this?)

Elena has been in a special day mixed class for over two years now.  She attends for two hours and twenty minutes a day, Monday thru Thursday.  She was in a pre-special day program at Therapy West, four days a week for six months, two hours and twenty minutes a day, funded by the Regional Center.  She began it soon after her diagnosis.  She was receiving occupational therapy (What's this?"), speech therapy and physical therapy at the same time, at the same place, all funded by the Regional Center.  She began attending our school district two days after her third birthday.  She will be attending a kinder collaborative class in the fall.  She will be one of seven high-functioning autistic children in a class of typical children.  She is also bused to and from school.

We think their special-ed teachers are truly amazing educators and beautiful souls.  We are lucky to have them.

Both receive the full litany of services from our school district, from Speech Therapy, Occupational Therapy, and Adaptive P.E.  All in the classroom environment.  Elena receives and extra hour of OT clinic every week.

They attend different schools.  Next year as well. 

Both have been receiving in-home intensive ABA Therapy for over a year now and will continue to receive it for as long as medically necessary.  (What's this?)  ABA Therapy and other in-home therapies are now mandated to be covered by health insurance.  Prior to the Affordable Health Care Act it was covered by State and Federal funding through the Regional Centers.  There is a copay for each session.  The Regional Center covers the cost of the copay.  If not, with our insurance, it would cost $80.00 a week.

We qualify for social skills programs (What's this?) through the Regional Center but do not use them at this time.  We need some Velazquez family time on our weekends, or just time...period.

We qualify for weekend in-home respite care hours (What's this?) and weekday supplemental caregiver support hours as well.  It took some time to settle with the right agency, and with the right type of caregivers.  Just because they show up doesn't mean they're a good fit for our kids.  We use the supplemental support hours more than the respite care.  We have our preferred caregivers spend time with Elena in the morning a few times a month before she goes to school.  Gives me a chance to do...whatever.  Even work a part-time job, someday, I hope.  Not like we can have it everyday, with therapy happening.  So, you know, we have it.  Doesn't mean it's convenient to use. 

ASD comes with many surprises.  One of them is a huge mountain of paperwork.  Another, meetings, lots and lots of meetings, especially early on in the diagnosis.  Another, hours spent in therapy.  Another, hours of parent training to be more effective autism parents.  Oh, and phone calls and voice mails and phone tag.  Surprisingly, not much email.  And you sign your name, a lot.  If you are newly diagnosed autism parent, expect the same. 

We are both older.  That can contribute to having a child with an ASD.

We come from families where there appears to be, perhaps, a genetic predisposition towards ASD's, though prior to our two it went undiagnosed.

The only medically sound indication that a child may be born with an ASD is if  there is a sibling with an ASD already in the family.

We did not know Nicholas was autistic until Elena was two. 

Looking back, Nicholas actually displayed physical behaviors associated with ASD's while in the womb.

No, really.

We don't talk much about cures.

We don't talk about vaccines at all.

We do talk about neurodiversity. (What's this?)

We are not trying to force square pegs into round holes.

We are trying to get rid of the holes.

That is us, in a very small nutshell.

And as of yesterday, this is Nicholas and Elena.

And we love them more than earth.

We've come along way in the nearly three years since our ASD family odyssey began.

And if you know us, so have you.

ADDENDUM:

August, 7, 2013

Since originally posting this back in May we have decided it is time we pursue a social skills class for both children.  They will, once funding is approved, begin a social skills class at a local gymnastics school called Leaps and Bounds (learn more here).  It looks to be very promising.  The therapist that assessed Nicholas and Elena was extraordinarily talented.  They will be working with her and the very talented staff in a very small group setting.  We all can't wait for it to begin.  Hopefully soon!

Elena will be in school for a full day starting next week.

We will also be pulling back on therapy hours out of necessity, due to new school schedules.

And also, with the enacting of the Affordable Health Care Act, we now deal with insurance more than we have ever dealt with before.  Insurance has been great, though our service providers are doing a lot more paper work than they used to do, but so far we can't complain about our insurance coverage.  Hope it stays that way. 

The documentary will premiere at the end of September.  It will give a bit more information about my wife and I as a couple and our everyday situation in general.  Even though it was filmed over 18 months ago, we are still living, more or less, the same way of life.  We're all just a bit older.   

August 22, 2013

We have called an IEP for Elena.  We are soon going to have her in another program at another school.  The kindergarten collaborative was not the right fit under the conditions it is in now.  Over 30 children, about a quarter of them special needs.  In a class that size she gets lost in the shuffle.  She is also bored.  She is academically beyond the curriculum they are teaching.  So she wanders the classroom.  She requires more attention than that program can provide.  She will regress there.  It's clear to everyone that she needs to change to a program with less kids and where, academically, she can be taught new concepts and ideas.  We will have a new reality yet again very soon.  It has not been easy on her.  She is one tough kid. 

May The Force Be With You

Source: Public Domain

We are fortunate to be able to take ourselves to Disneyland every six months or so.  We usually attend during the work week and in the off-season, to avoid crowds.  We have had several trips that we're not so great and some that went just fine.  With the autism, it's always a crap shoot and sometimes we are lucky to roll a seven and sometimes not.  It just depends.  In terms of their condition, Disneyland does present several challenges but we've been able to cope and adapt to them, with patience and a little luck.  Our last visit was a testament to that.

We are in a high "Star Wars" cycle right now, especially Nicolas but Elena isn't so far behind.  It's great!  It's really cute and they love all the characters and the movies.  It makes them happy.  It was a part of my teenage years so it takes me back to those times as well.  It's been nice to be able to share and connect with them through these films.

With Nicholas it is, perhaps, a bit more complex and obsessive.  He is at the age still where it all is very real to him.  All things "Star Wars" are a very meaningful aspect of his current reality.  He lives it at a very deep level.

At Disneyland there are daily shows at the Tomorrowland Terrace of an interactive performance-based children's theater piece called the "Jedi Training Academy."  It is an outdoor stage show where they get a bunch of young children from the audience and train them to be Padawans (a Jedi Knight's apprentice).  They get a lot of children.  They are chosen by the Jedi Master who says "you there, and you in the green, you in the yellow, you with with the mouse ears..." and so on and so on till there are about forty kids on stage.  They put robes on the kids and give them toy light sabers, and begin to "train" them in the Jedi ways when Darth Vader unexpectedly shows up, accompanied by Darth Maul and two evil Storm Troopers.  Darth Vader tries to turn the kids to the dark side, and each kid gets to have a toy light saber duel with him.  It's fun and really neat for both the kids and the parents.  And very cute.

So, I didn't really know how the show was run having never had any interest in seeing it prior to this last visit.  In my ignorance, I though they chose one kid from the audience, if they chose any kids at all.  Nicholas really just wanted to see Darth Vader because I told him that he was going to be there.  That is why we went to see it.  I didn't know anything else.  We got there right as the show started and the "hosts" were explaining what would happen.

The main players for that performance came out--the Jedi Master and three assistant Jedi Knights.  The Jedi Master began choosing the kids to be in the performance.  Suddenly kids were frantically jumping up and down, throwing their hands up in the air, and getting in Nicholas' way.  Kids kept getting picked as the Jedi Master moved down the rows.  Nicholas was watching them as they ran up, got put in a robe, and given a light saber.

The Jedi Master gets to our section of the audience and I'm thinking, "What if he picks Nicholas?  What if he actually gets picked?  What will he do?  Will he do it?  Will I have to intervene if things go wrong?"  Luckily, he doesn't get picked as two older kids jumped in front of him and he disappeared from the Jedi Master's line of sight.  I was relieved, for a moment, thinking now all we have to do is watch.

And then the trouble began...

Instead of wondering what he would do if he got picked, I should have been thinking, "What the hell am I going to do if he DOESN'T get picked!" because he suddenly, without warning, became very, very, very heartbroken.  I was stunned.  He started crying deep painful cries of hurt and anguish.  Cries that I have only heard once before.

We are very good at including him in everything he can be included in.  We go out of our way to do that for him.  And now, when he so desperately wanted to be included, he wasn't.  He was excluded.  It was making him, emotionally, fall apart.  It was awful.  An all-time low for us both.

I had no idea he would have that reaction.  I was trying to keep my own emotions from getting involved.  Jill was away on other rides with Elena, so it was just the two of us.  I kept trying to calmly explain that it was okay, that we could watch this one and come back for the next one two hours later, but it wasn't working.  All-the-while I was feeling like such a heel and jerk for not thinking the scenario through and for letting down my son.  He quickly escalated from hurt tears to inconsolable heaves to a good old-fashioned ASD public meltdown as I desperately text messaged Jill to come as fast as she could.  She did, and took over trying to calm him.

Elena has become overly sensitive to Nicholas' crying recently, so when she got there with Jill she started to act up as well, which in turn caused him to take a few swings at her to everyone's growing frustration.  Having public meltdowns is nothing new for us, though it has been awhile thanks to intensive therapy.  This was Disneyland, though, so, at least for me, the pressure to get it under control was extra intense. 

It was getting very heated between the four of us now, with Elena screaming and his tone becoming angrier.  Jill and I exchanged words, over what I don't know, but doing so propelled me to pick up Elena and move away from her and Nicholas.  And as I did that I ran straight on into the "host" who had introduced the show in the first place.

I went up to her and said something like, "I know there is nothing you can do about it for this show, but my son is autistic and he is over there having a really awful tantrum because he was devastated that he wasn't chosen to participate.  He just doesn't get it.  Is there anyway, anything we can do to make sure that he gets picked for the next one?  I mean, he's dying over there.  He's heartbroken.  His feelings are hurt."

She was very calm.  She looked his direction and said that, "He should be here at least fifteen to twenty minutes early next time, get a good spot and when the Jedi Master starts picking kids to be loud, jump up and down and say pick me, pick me as much as he can.  There's no guarantees he'll get picked still, but the more shows he sees the higher the chance goes up he'll get picked."

I thanked her and went back to Jill and Nicholas and asked him if he wanted to get the light saber I had made for him that we had on hold over in the Star Wars store.  That's a classic "redirection" in behavior management terms.  To my surprise he said, "Yes!" and began to calm down.  As we walked over to get it I told Jill what the host told me.  We agreed to do just that but we had about an hour and a half to burn.  In the meantime, he ate, went on a ride with mom while I went on Star Tours with Elena and made her a light saber of her own.

Come 2pm we are all back and I take him to the get a good spot.  This time he has his green Yoda light saber and I am sitting right up against him so that no other kid could move him out of the way.  We are sitting next to two older boys, about ten, and they both have light sabers as well.  So things are looking good.

2:20 rolls around and the "hosts" come out to introduce the show, and my person, my girl, my connection isn't one of them.  "Damn it!" I say under my breath.  "What the fu**?!"  And I text Jill this who is sitting close by with Elena, watching.  She goes over to one of the new hosts and explains our plight and basically gets told the same thing, to just jump up and down and say you didn't pick me last time.  "Great.  Here we go again," I think to myself.  "And if he doesn't get picked...again?"

At 2:25 the players come out.  Same Jedi Master, and I'm thinking, "Okay, that's good.  He better pick him or he's getting his ass kicked" and other such thoughts parents think in those situations.  And then to my surprise I see my host, my connection, my Disney-employee-in-shining-armor, and she is now playing a part in the show!  She's a Jedi!  And I start thinking, "Okay, we got a chance here!"

So the choosing of the children begins, and he starts in the other section, and I'm thinking, "Crap, we should have been over there" and I start telling Nicholas pick up your light saber and swing it around, and jump up and say pick me, pick me, pick me!  And he starts doing it as much as he can, and the two older boys next to us start doing it and all three of them have their light sabers and are jumping up and down and the moment he gets to our section the Jedi Master says, "you three boys with light sabers come up!  But leave your light sabers!" And he runs up, leaving his light saber with me, and before I could look up he has his robe on already and is up on the highest level of the stage, waiting in his "spot."  Wow!  He's doing it!  And the host, my connection, is the one running this aspect of the show.  Awesome!

The show begins and he is doing his thing up there, the best he can, and he is taking it very seriously because for him, this is the real-deal.  It's the Magic Kingdom only he is at the age where it's not magic, it's reality.  In his mind and heart, he is learning to be a Jedi.

Soon after Darth Vader comes out, dramatically rising from the nether regions, trying to sway the kids to join him and embrace the dark side, and then each kid gets a chance to duel with him to prove their worthiness.  During this time one lucky child gets to do something special that the others don't.  One child gets told that they can "Force Push" Darth Vader and his two Storm Troopers.  If you have seen the films then you know what a Force Push is all about.

I don't know how it's timed out.  I don't know if the host who is now the Jedi Knight and in charge of sending the kids to Darth Vader knew how to work it.  I don't know if the crew and tech people behind me had anything to do with it.  I don't know if it was just dumb luck, but Nicholas got to be the kid that Force Pushes Darth Vader, and then both of his Storm Troopers, first separately then both at the same time.  I was doing all I can not to break out in tears of joy at the same time clicking away about fifty pictures.  I was so proud of my little boy!

I would like to think our host-turned-Jedi had something to do with it, but I will never know.  If she did then she is forever in my gratitude.  Really.  And I will always send her the highest vibes I can.

How ever it came about, it was truly meant to be.  He will have a special moment of triumph that, for him and for me, will honestly last a lifetime.  From the lowest of lows to the highest of highs in a little over two hours, for both a boy and his dad.  I have never experienced anything like that.

And to think, if he had been chosen the first time, he would have never had this wonderful and meaningful experience at all.

May the Force be with you, always!

The training begins.

A Jedi listens...

Rising from the nether regions of darkness.

You do not understand the power of the dark side.

Join me, younglings.

The challenge is issued.

Taking notes in his Jedi mind.

That's our special Jedi.  The Force is strong with her.

Approaching Darth.

The Force is strong in this one!

He pushes!

Take that, Darth Vader!

First you!

Then you!

The Double Force Push

We will never join the Dark Side

He has proven himself worthy of being a Jedi.

Uhh...turn around.

Our Padawan