Our Documentary is Live on Interacting with Autism!

The journey that the autism diagnosis sends the parent on is unparallelled -- there is no other like it, and yours is yours alone, as no two journeys are ever the same.  It is difficult to express what the path is like, but a few words come to mind when I think of my own journey, the one I travel with my family, with my two precious special autistic ones.

Daunting.
 

Demanding.

Unknowing.

Mysterious.

Haunting.

Beautiful.

Mindful.

Devotional.

Expansive.

Awakening.

Personal.

Evolutionary.

Those are but a few of my words.   Other autism parents have their own.

There is one more word, one that I have come to understand and embody.  It is less a word and more a sentiment, a way of moving forward, a way of being in life when living isn't much about being and more about surviving.

That word is: Hope…

"Hope is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm - 

I've heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me

~Emily Dickenson

I have hope, so much hope, for my children and all children and all people the world over.  As an autism parent I have striven for clarity, for understanding, for light in the darkest of hours.  I have striven to hear the song of Hope in the strange Sea of the unknown.  I have striven to feel the warmth of Hope in the cold and desperate moments.  Without Hope, I would be lost.

I am  honored to have the story of our family be included in this new, unique and amazing autism support website.

http://www.interactingwithautism.com/

I am impressed by the enormity of its scope.  

I am excited by the tremendous amount of useful information it presents.

I am gladdened that others out there, living with autism, directly or by association, now have a wonderful, easy-to-navigate resource for answers, ideas and options.

I am thrilled that my family and I are part of something so dynamic and so profoundly needed.

I am humbled to be a part of something that, if nothing else, inspires so much Hope.

I want to thank Mark Jonathon Harris for his extraordinary vision to understand and see the need for such a website, and for his tenacity and passion to get it done.  

I am grateful to the U.S. Agency for Healthcare Research and Quality for providing funding for a such a much-needed and important autism support website.

I want to thank our friend and filmmaker, Nando Grancelli, for capturing such a moving portrayal of our life at that time.

I'd like to thank all the hardworking autism professionals, educators and students at USC and the USC School of Cinematic Arts who made this dream into a concrete reality.  Kudos to all of you!

Sometimes you discover the journey.  Sometimes you seek the journey.  Sometimes you are thrust forth on the journey whether you want to be on it or not.  Whatever got you on the journey, whatever compelled you to take it, whatever keeps you on it, there are certain truths all who travel come to understand -- you never know where the journey may take you, and you are never without Hope.  

Hope lives in your heart.  It asks nothing of you in return, other than you carry it inside you.  Sometimes, especially in those dark places we must travel, we need a reminder that it’s there, that we have it, that it’s still a part of us.  When we do, the road isn't so dark anymore, and light begins to appear, and our path gets a bit easier.  This site, this incredibly beautiful site, is a great reminder.

Please come by and watch our documentary at the link below:

http://www.interactingwithautism.com/section/living/velazquez 

And when you are done, watch all the other great and informative videos as well.

http://www.interactingwithautism.com/

And then, share!  Share with everyone you know!

Raise Awareness.

And inspire HOPE. 

Goodbye, Baby Teeth

A few weeks ago Elena last her first tooth.  About twenty-five minutes later, she lost her second.  I am blogging about it because it was a uniquely challenging ordeal.  Her autism made it so.  We were monitoring her mouth for well over a month.  Her teeth had been promising to come out all summer, slowly getting looser and looser as the weeks passed. 

I was the parent at home when it really began to happen.  She is still fairly nonverbal when it comes to things like this, so she clued me into that she was about to lose them by taken my hand and putting it in her mouth to pull them.  It was then when I realized it was going to be two teeth, as her two lower front teeth felt like they were pointing due west towards Venice Beach. 


We sat on the floor, quietly, as she played on the iPad, allowing me to move her teeth back and forth to get them as loose as I could before trying to pull them out.  She as getting bored and a bit frustrated and went and got me her tooth brush so I could brush them out.  She's smart, that girl of mine. 

To be honest, her mom is better at these things than I am, as I would have been content to spend the next six hours sitting there trying to gently ease the teeth out of her head.  I used the toothbrush and it seemed to be working, but afternoon was becoming evening, and I didn't want her going to bed with those teeth the way they were.  So I text mom to hurry home as soon as she could.  She had a job to do.  She had just pulled Nicholas' tooth the day before. She was in the zone.

The more autistic children I meet the more I am convinced that most of them, if not all of them, have a very high tolerance for pain.  With Elena, her verbal deficiencies make it difficult to ascertain just how much pain she is feeling.  My instincts were that she was in more pain than she was showing.  I mean, she just didn't look happy.

We were trying to explain what was going to happen.  This was her first tooth, so of course she was anxious.  She wanted us to do it, but was anxious when it came down to actually pulling it out.  Heck, I was really anxious when I had one of my molars pulled when I was in grad school, and I was on Novocaine!  We knew she was starting to feel agitated, and we did our best to reassure her that it would hurt only for a little bit. 

After a few false starts and some good half-cries and arm flaps, the first tooth came out.  She was tearfully relieved, and probably a bit shocked to feel just gum where there used to be tooth.  We knew she felt better, but knew there was still one more tooth to go.  So did she, and wasn't all that amused to have to get up and do it again, but she did.  So she bravely got up and we did it again.  And soon we had two.

We had put to notify the Tooth Fairy the week before, letting her know that soon she'd be called to duty.  We sent her a text to let her know that Elena had not just lost her first tooth, but she also just lost her second tooth.  She took it all in stride, or in her case, in flight, and texted back that she was prepared for any and all baby teeth contingencies.  Elena, apparently, isn't the first kid to lose her first two teeth within minutes of each other.  She reminded us to tell Elena that she was very brave and to thank her for letting mom and dad help her get her teeth out.

Our Tooth Fairy understands that our two special little ones just don't get that excited about money.  So understands that placing paper money of any denomination under a pillow will mean absolutely nothing to any person around here ages 7 and under.  She has to go the extra mile when dropping by this ASD household, often stocking up ahead of time with an item here and there from the Tooth Fairy Target -- hopefully something more suited to the needs of special little children.  She picks up so much stuff that when she gets here, all she has to do is fly around dad's closet and look in the good hiding places.

Good thing dad got rid of his old magazines. 

Luckily she knows the kids around here very well, and was able to secure out of dad's T-shirt drawer a very appropriate item in exchange for two newly lost but really cute baby teeth in very good condition.  Our Tooth Fairy recycles, taking the lost teeth and giving them to the new babies being born the next day, so she was very excited to be getting two very awesomely cute little girl teeth to pass on.  We got a very cool, forward-thinking, eco-conscious Tooth Fairy that way.

Elena was a real champ.  She has had a lot to deal with these last few months, with her school placement and the mess that made of her life for about a month.  This came right as she was settling into her new, "new" school, with the new schedule, new bus, and new routines.  She has held it all together, though, through all of this -- better than most typical adults I know.  She is an amazing soul.  She never ceases to surprise us.  And, teeth or no teeth, we love her more than earth.

 

When They Speak, They Speak of the Stars

A few weeks ago, on the way to school, she suddenly stopped, looked up at the sky and said, "Wanna skip on the clouds."

A few nights back she asked to go for a walk before going to bed. So I took her outside, freshly bathed, wearing her pajamas. We slowly stroll, hand in hand, down our block. She was looking up at the sky. We get past the trees covering her view and we find the moon.

She stops and says to me in her sweet little sincere voice, "Wanna sit on the top of the moon."

I melt, as I always do, and I told her, "Someday we will, Elena. Someday."

For a five year old girl who doesn't really talk, she speaks some of the most amazingly beautiful sentiments I have ever heard.

in the public domain

This bright star caught my eye last night. It seemed to me to be glowing, flashing, with different colors -- red. blue, green -- almost like it was moving. I stopped and looked at it for minute or two. It was captivating me.

I didn't know what star it was, so I went and got out our iPad and opened up the "Star Walk" app. It's an app that if you point to the sky, in any direction, it displays what's out there, even satellites. Turns out it was Arcturus -- the third brightest star in the northern hemisphere, 36.66 light years away. It was...exceptionally vibrant.

Funny thing, I had to take Nicholas in for a medical appointment last Friday morning and afterward, on the drive to take him to school, he asked me from out of the blue if Arcturus had people. I was kind of taken off guard.

"You mean, the star?" I asked.

"Yeah," he said.

We talk about the universe but it's been a few months since we had a real specific chat about the night sky. It's not extraordinary that he brings up space, but he is usually more interested in the planets than stars. I mean, this is a boy who had memorized the entire solar system before age two, before he could put together a three-word sentence.  That's living with autism.

"It could. It really could, but I don't think they'd be people like us. They'd be different. They might look like us but they might look a little different. There are probably lots of different people from all over the universe, because there are so many stars. Arcturus could have people though."

"Are they nice?" he asked.

"Yes, they're nice." I replied. "If there are people in Arcturus, they are probably very nice."

And that was it. I took him to school, without another mention of it. It was a good little conversation - a rare treat around here.  Autism has many mysteries, some of them harsh and difficult, and some of them intriguingly beautiful.

 
Odd how, if you think about it, in a way, that it suddenly was there tonight, Arcturus, big and bright and colorful, getting my attention, making me wonder what I was looking at, making me want to know.

Then again, if you think about it, in another way, maybe it's not so odd after all.  

It's just another beautiful mystery.

 

September 11 - Then and Now

I remember that I thought it was going to be a hot day, but wasn't sure if it was going to be too hot to walk over the Brooklyn Bridge to my job in Soho. Could I walk or should I just take the F Train? I had to decide quick.  So I turned the TV on to NY1 News like I always did to catch the weather forecast. 

They were showing helicopter footage of the World Trade Center. It was on fire. They were speculating that a plane had crashed into it. A small plane. It had just happened. A few minutes later I could see a jetliner cross the screen, really close up. And then the explosion. I have never seen that footage again.

Having two little ones on the spectrum for the past seven years has pushed aside the lingering memories and haunting images and unsettled emotions that used to be a daily part of my life from that day and the days and days that followed. They come back every once in a while, those memories and images, but autism has changed me. If autism has taught me anything, it's to savor the moment you are living, the moment you are experiencing, the life you have, as it is, right now.

My babies were adorable this morning. My daughter with a new toothless gap in her pretty little mouth. My son designing yet another "city" with his Legos, toy planes, structures and cars, all the while getting ready for their 6:37am bus pick up. 

I remember calling my parents twelve years ago right after the second plane hit. It wasn't even 6:30am yet on the west coast. They had no idea.  Twelve years later, west coast time, my wife and I are putting our two little autistic children on the same bus, dressed in the same school uniform, going to the same school and same classroom with the same great teacher and aides.  Had you shown me that scene of my future self in those moments twelve years ago, when the world stopped and came crashing down, walking with my little ASD family to the yellow school bus waiting at the corner, I would have been shocked, thrilled and relieved to know that was my destiny - because that meant that I was alive, had two beautiful children, was married to the same lovely and caring soul, and was living a life I never imagined I could have ever lived. 

Cherish this moment. 

Love this moment. 

Right now. 

We are here.


And here is a beautiful place to be.

 

Saturday, September 28 marks the official launch date of the website "Interacting with Autism" where our documentary "Autism: Rethinking Family" will be permanently featured. Federally funded by the Agency for Healthcare Research and Quality (AHRQ), and guided by a Board of Advisors and Consultants that includes many of the country’s leading scientific and medical experts on autism, "Interacting with Autism" is an intensive video-based website that hopes to present the most reliable, evidence-based information currently available on how to understand, treat and live with autism spectrum disorder. 

We have been able to preview the site and I have to say, it is an ambitious undertaking and that should prove to be a fantastic resource, providing a wealth of information that will be especially useful to families who are new to the diagnosis, as well for those already familiar with the demands and lifestyle changes autism brings. Our documentary is one of many great short films highlighting the various aspects and issues families encounter when living with autism. We are very proud to be a part of this fantastic, dynamic resource. 

I hope you can visit their Facebook page, give it a "Like" and stay tuned for what promises to be a valuable addition to the growth of autism awareness.

"Interacting with Autism" on Facebook