In a split second, the outside world, the sounds of birds tweeting, the passing vehicles on our busy street, the dinner conversations at our picnic table completely halt.  The world fades away into a cloudy haze.  I see only my boy, his head tilted back, chin up to the sky, examining the clouds…

I’m over at Hopeful Parents today.  Come on by and sit for a spell, won’t you?  And while you’re there, check out some of the amazing pieces from other Hopeful Parents!

Click here ————>>>>>  “The Rain” <<<<<—————Click here

We currently find ourselves nestled in the space between the regular school year and the upcoming summer program.  This less structured time finds my boy battling to maintain control over his faculties as expectation and predictability melt away in the summer heat, leaving him overexposed and unprotected.

So, we work hard to maintain order, predictable order.  We dust off the visual schedule.  We restock the chew-tubes and straws.  We type-up a list of Jonas’ sure-fire calming-down, settling-in favorites for the babysitter just in case.  And as we prep, we take deep breaths, exhaling long therapeutic sighs because he hasn’t needed any of these things at home for some time now.  But it’s a different time, a different season and we’ve watched our baby struggle desperately, sometimes fruitlessly, to maintain some semblance of control over the unpredictable, free-frolicky nature of summer.

Yet, no matter how much we prepare, we’re often grasping at straws because no matter how organized and planned out our day is, it simply is not the structured school day that my boy has grown to find comfort in, to crave.

Additionally, this season is ripe with highly preferred objects and items that send my boy into dysregulated sensory overload.

Motorcycles whip by us everywhere we go.  Landscapers and regular folk with their weed-whackers, leaf blowers, and lawn mowers dot the scenery on our daily travels.  My boy who would do just about anything to see, touch, and feel the vibrations of such items loses himself to the hum of their engines.  They cloud his mind, creating tunnel-vision, feeding a unquechable thirst that lies within him.  A thirst that he cannot regulate, one that I feel largely helpless in mitigating as these items pop up unexpectedly here and there, sending him back into a downward spiral of sensory dysregulation, fueling a fight or flight response.  This response that largely takes the form of fight finds my boy completely overcome by his senses and emotions, unable to control the simultaneous angst and unfettered joy that these items elicit from him.  And in those moments we lose him.  Our typically tranquil and lovable boy, our boy who bounds and bounces about in a flappy rhythm, loving those about him, happily drinking in the scenery fades, replaced by an overwhelmed, swiping, hair-pulling mess of behaviors.  Behaviors that take the place of the words he cannot reach in those moments, placeholders for the competing emotions tugging at his seams.  Placeholders for unspoken self-expression that if vocalized might sound like: “I don’t like it!” “This is so exciting!” “I can’t do this!” “Why do I feel this way?” “Let me at it!” “Help me!”

And then there is the inevitable onslaught of new friends, teachers, therapists, babysitters, classrooms, situations, schedules.  The sum total of which leaves our entire family wishing away the summer, longing for the colder weather, the predictable comforts that the fall will bring, and the return of our beautiful, joyful cherub.

And so in the meantime, we weather the storms as they come, ride the waves that feel as though they could drown us, we maintain order and structure as best we know how, and keep our baby close to us as we navigate the unfamiliar, unchartered territory of summer together.

Today is the day that my very first post has been published on their website.  Come on over and sit for a spell, will you?  And while you’re there, take a minute to look around.  There are some pretty amazing folks contributing to this grass-roots community!

Click here ———————–> “The Word” on Hopeful Parents

I would hang up the phone after our conversation and continue preparing dinner.  My children would continue to play, and my mom would purchase a brand spanking new red, Nascar bicycle complete with racing stripes and neon yellow tires.

Jonas would love it.  Initially he would show excitement in that Jonas way of his, which doesn’t really look like excitement at all, but is through and through.  Later, he would scriptedly tell me about the “suhpize” in the living room.  He would flap and shudder, awkwardly hopping from one foot to the other as we ogled the Nascar racing bicycle and once again tried it on for size.  Perfect!

Later my mom would tell me about the bicycle purchasing experience.  She would tell me about how she got a really great deal on it after using a coupon and discount.  She would be quite pleased with the fact that she saved so much.  I would be pleased too, and the bit of guilt that I would harbor would lift ever so slightly.  But it would be the next part of her story that would stop me in my tracks and linger with me for days after, coloring my dreams at night, churning my stomach periodically throughout the day.

You see, April is Autism Awareness Month across our nation and in many places across the globe, and like many non-profit organizations that serve in the name of those with autism, Autism Speaks found a partner in Toys R Us to raise funds for their organization, for research projects, advocacy efforts, 100 day kits and more.  So, when the clerk at the check out counter asked my mom if she would like to donate to Autism Speaks just days before April, my mom would say yes.  And when the clerk asked her in turn how much she would like to donate and she would reply $10, and then a woman in line behind her would scoff at her gesture…loudly.

“Ten dollars?” she would sneer with a roll of the eyes and that guttural mocking noise that people make in judgment of others.

My mom being a woman with far more restraint than I would say nothing to this woman, though she may have been throwing daggers in her mind.  She would carry on with the transaction.  She would walk through the exit awkwardly crouching as she guided the Nascar bike to her car with her head held high.

Yes, ten dollars.

My mom would share the story of this exchange with me later, and it would haunt me for days as I tried to process it.

I would wonder repeatedly why someone would scoff at such a gesture.  Was it the amount of money…too much or too little?  Was it the organization?  Did this woman have issue with Autism Speaks?  Was it her ignorance or something else?

Obviously I will never know why her judgment came down as it did, but I can’t help but feel the heavy irony, the weighted meaning that envelops the entire exchange.

She could never have possibly known that the bicycle that was being purchased by my mother was for my beautiful cherub who has autism.  She could not have known (I hope) how deeply her remark would cut through the air, marring a moment of levity, of pride, of potential that my boy may possibly learn to pedal, not even ride, but pedal this bicycle, training wheels and all.  She couldn’t have known.

But she did say something.  She did suck the air out of the experience to a certain degree. She did display her ignorance, her judgment, her rudeness, and poor social skills…her obvious lack of autism awareness.

This year, I had been pondering and planning and prepping something a little bit stronger, a little bit beyond the reaches of simple awareness into the realm of education for Autism Awareness Month, but now after this moment fell into my lap, I can see that for many autism awareness hasn’t yet dug in, rooted, and taken up residence in their hearts and minds.  Indeed for some awareness has yet to be even a zygote of an idea.

So, this year, I will be taking a multi-faceted approach to raising awareness.  I will once again be Lighting It Up Blue.  I will once again wear a different autism awareness t-shirt every day of the month.  I will once again wear my puzzle piece pin every single day.  I will once again brainstorm with my older children about how they want to raise awareness with their peers.  I will once again have conversations.  I will once again share our story.  And…for those who are ready, who are open, and for those that are neither ready nor open, I will educate from the heart and the mind and the soul in the name of my beautiful baby boy and the 1 in 88 who deserve nothing less than understanding, and acceptance, and love.

1 in 88.

The shock, the finger-pointing, the fear-mongering, the downright ripe for the picking anger and anguish that such data elicited lit up my news feeds on Twitter and Facebook like a Christmas tree.  The tsunami of emotion that such figures evoked fed our parental insecurities, our skepticism, and mistrust of authority, in essence feeding the divisiveness in our community.  That divisiveness that our families, our children, our world cannot afford.

I didn’t dig too deeply into the media, knowing that our community would need to sit with this information, knowing that collectively we would need to process it and interpret it and accommodate it into their existing data banks only after the onslaught of shock and emotion worked its way out.  I myself began processing what these numbers mean, thinking deeply about all of the questions and emotions that this “new” data evoked in me and what it then said about our children, our community, and our world.

But what I couldn’t get out of my mind and my heart was a sense of urgency.

This “new” data fed my sense of urgency.  The irony is that I’ve held fast this urgency for years now, yet somehow the urgency became more urgent, if that is possible, upon initially hearing about and then beginning to process these numbers.

Because what they are is numbers.  Shocking numbers…yes.  Old numbers…yes.  But in the end, just numbers.  Numbers to the casual observers, to the news reporters, to the statisticians.  Just numbers.  Numbers come in, they sit, they leave like that idiom we oft use to describe our children in relation to their chores, “in one ear and out the other.”

But I, like so many of my fellow autism Mamas who started to buzz about and post about and talk about last night, see more than just numbers.  I see the face of my baby boy.  I see his smile, his laugh, his everything that makes him uniquely him.

I see our collective history intertwined.  I see his depth and his milestones and his grace and his challenges.  I see a montage of moments that I’ve collected and stored in my memory that captures my boy.  I see him.

And me.

I see my husband and children, my parents, my siblings, my aunt and cousins, my husband’s family, our friends who are less like friends and more like family.  I see our network of therapists, physicians, and teachers, both past and present.

I see our collective work.  Our tears, our joy, our laughter that spills forth, all in the name of Jonas.

Jonas who is 1 in 88 to the world, but to us he is indeed more than that.  To us, he is 1 in a 1,000,000,000,000,000,000.

This morning, just like every morning, her words touched my profoundly.  So, profoundly in fact that I started to craft a comment, but like most mornings my comments transform into volumes, so I deleted my lengthy processing and wrote this instead:

Take a moment to read Jess’ post, will you?  You won’t regret it, I promise.

You back?  Good.  I felt the immediate urge to capture these words, this verbalized epiphany of sorts here in this space as a testament to the journey that we’re all on.  So here’s my volume of a comment.

*****

I was in denial too, though mine took a different course because my denial lasted all of 10 minutes after the OT that happened to have walked into the treatment room at the time (who observed my guy flapping and stimming) during his PT eval (because I had at least accepted that my 15 month old boy who couldn’t even crawl yet needed help with movement) intervened into the eval where I was giving the PT Jonas’ developmental history so that she may advocate for more testing.  I was taken-aback.  I remember the emotional haze of our conversation, not so much the words, well except for when she said in rebuttal to my blatant denial “look at him now, he’s just flapping away.” I didn’t even know what flapping was.  I thought it cute that my little bird would flap so, as if he were about to take flight.

But it was in that instant that the picture of my boy came into focus…sharply.

We hadn’t even left the PT eval where they would recommend therapy for gross motor delays…not autism, not anything else really, and I already had accepted that my son had autism.  It was as if I had already known all along, but no one had yet fed me the word…and once it was suggested…I became absorbed in it.

And here I am still…absorbed.

Because that’s what this life does to us, isn’t it? It absorbs us.  I suppose no differently than how my other children’s lives absorbed my own, but somehow it’s different….more urgent.

The downside to this immediate conversion so to speak is that I didn’t have the extra time to deal with me and how I felt/feel about the diagnosis that would come down over a year later.  A year after we started fund-raising for Autism Speaks.  A year after we had already made the announcement to the world.

Our son has autism.

We knew, as we’ve always known.  It is years later and I still haven’t properly dealt with those feelings.  I stuff them down, but they bubble up here and there threatening to drown me.

Bubble, bubble.  Stuff, stuff.

” I don’t have time for this,” I tell myself.  ”Gotta capture those precious minutes.  Gotta do, do, do.”

Recently I realized somehow that I’m not the exception to the rule.  I’m not the mom with it all together.  I’m not the mom who will crack the autism code.  I’m not different than anyone else walking around in the same shoes.  I stand not on some pedestal somewhere (though my friends and family still insist on placing me on one because “you’re so strong…” blah blah blah>).  But no, I’m not different than anyone else.  Not different.

That realization has somehow provided me some necessary release, because I’ve been walking about with the weight of the world on my shoulders for years now, and its only just now that I actually have accepted that I can’t do it all.  I can’t mitigate every single bump in the road for my boy.  I can’t because I am only human.  And that’s all right, in fact it’s more than all right because it is my humanity that allows me to give as much as, and in manner that, I do…wholly, without restraint.

In this momentary clearing (because indeed even I know that it is momentary and that soon I’ll be back to the routine of doing more than I can do) I’ve found some sense of peace.  I’ve found intimacy with my husband that has been lost for years.  I’ve found the ability to pause in the moment and observe my children as they are. right. now.  And that’s huge for me…living in the moment.

Right. now.

The Nature Center is a sparkly gem of a place.  Though it does not have the draw of the World Famous San Diego Zoo, nor Sea World, it is absolutely not to be missed on a trip to San Diego, especially if you have children.  The history of the lands where the Nature Center is located is rich and colorful.  At one time it housed one of the leading producers of gun powder used in the war effort during World War I.  Potash and acetone extracted from kelp found in expansive beds along the San Diego coastline was converted to cordite, an explosive, that was used in fuses for the British.  The road leading into the Nature Center has been named Gunpowder Point Drive as a tribute to the history.  In later years, after the industry fizzled out, the lands were used for storage of cottonseed.  Unfortunately, the plant caught fire and the business was lost.  At some point vegetables were grown on the land and the fields became the backdrop for the cult classic Attack of the Killer Tomatoes. In the 80s the lands were turned over to the city of Chula Vista, who created a wildlife refuge in its Chula Vista Nature Center.  Over the years, the site has grown, has become modernized, and has truly become a deep source of pride for the citizens of Chula Vista.

The entrance fee per person is completely reasonable and the aquatic center filled with aquariums and enclosures.  There are touch tanks where you can get up close and personal with stingrays and sharks.  There are birds of prey, sea turtles, endangered species, and trails.  It is a wonderful place.  It is home to a very successful breeding program for the endangered Clapper Rail.  And perhaps one of the most unique features is that every single creature on exhibit at the Nature Center is native to Chula Vista.  You don’t get a glimpse of that at the zoo or Sea World.  So, all in all, it is a wonderful, magical place.

When Micah was a toddler, we visited the Nature Center nearly daily.  And when I say daily, I mean DAILY.  It was absolutely the only motivator that worked to get my little guy potty-trained, and after more than a year of trying, I was ready to try ANYTHING.  And it worked.  Within weeks, my little man was 100% potty-trained.  Seriously.  Amazing.  It was at the Chula Vista Nature Center that Micah developed his love of animals, of nature, where he became the naturalist that he is today.  We used to joke that my then 3-year-old knew so much about the Nature Center that he would actually be an incredible docent.  At 4 years of age, he was already counting down the years until he was old enough to become a volunteer.

So, needless to say, one of things that Micah misses most about living in San Diego is the Nature Center.  Period.  It is the place where he feels most free, most balanced, most inspired in the world.  And that speaks volumes of this place because my Micah lives in a world where he rarely feels any of those things consistently.

Our visit was wonderful.  We reminisced, we rejoiced, we explored the new additions and improvements to the center.  We basked in the warmth of the California sun and immersed ourselves in this very special, and unique place.

Micah at the touch tank. His favorite stingray (the albino) has grown so much over the past 4 years!

Jonas was in sensory bliss at the touch tank!

Micah taking it all in from the Observation Deck

Jonas on the trails, collecting sticks. I nearly cried when I saw him squatting just so! His PT would be SOOOOOO proud!

And so we enjoyed the time, we drank in the day.  It was very bittersweet when we left.  Very.

TO BE CONTINUED…

The food, the smells, the sights, the warmth.

During those first couple of days, as we spent quality time with my husband’s family in Tijuana, I would feel younger than I have in years.  I would be reminded of a quote from one of my very favorite novels, Caramelo, that recalls the experience of returning to Mexico after a long stay in the States.

“The smell of diesel exhaust, the smell of somebody roasting coffee, the smell of hot corn tortillas along with the pat-pat of the women’s hands making them, the sting of roasting chiles in your throat and in your eyes. Sometimes a smell in the morning, very cool and clean that makes you sad. And a night smell when the stars open white and soft like fresh bolillo bread.

Every year I cross the border, it’s the same–my mind forgets. But my body always remembers.” –Sandra Cisneros

And as it always is after being away from my querida Tijuana for too long, it was…just. like. that.

The familiar hum of the city transported me back years to a time and place where a naive, yet ambitious 20-year-old girl found her niche in the world.  A niche in a place most simply pass through, in a language and a culture not her own, but so very much her.  Awakening in the morning in the hotel room to the heavy, cool air of the city.  The competing scents of exhaust, rain, and Suavitel on the morning breeze would bring me back to the days when I lived and worked at the children’s shelter just a stone’s throw from our hotel.  The buzz of the traffic zipping by on the old highway to Rosarito would recall to my mind Don Braulio’s singing, Doña Mary’s cooking, the drive in me to serve the migrant transient population, the strong friendships forged, and the love cultivated within the walls of this beautiful city, mi Tijuana.  It was here that for the very first time I felt comfortable in my own skin.  It was here where I was embraced for my quirks and irregular beats, where I was loved for the unique light that I harnessed and shined, where I felt whole.

I welcomed my beautiful Tijuana with open arms.  My husband, the two boys, and I would bask in her glory over the course of 2 short days while Sole visited with her mother.  We would eat richly, gluttonously really.  We would indulge in the company of our family there, savouring the moments that we knew at the back of our minds were numbered.  We would be tourists in this home of ours, visiting the local cultural center, the mall, and restaurants.  In the blink of an eye our time there would end and we would find ourselves parked in the familiar and excruciatingly long lines of the border crossing headed to San Diego, surrounded by vendors peddling ice cream, shrimp cocktail, candies, chips, cigarettes, rosaries, and ceramic renderings of The Last Supper.

During our time in Tijuana we would have high points, like Jonas playing word games with his Tio Hugo.  High points like when I nearly cried (okay maybe I really did) when Jonas scaled the play structure in the Burger King in Plaza Rio with minimal assistance from big brother Micah.

High point!!!! He's growing up so much! (Note: he's below the car in the pic)

High points like me meeting and then playing with my beautiful niece, eating shrimp tacos, admiring and tasting ingenious coffee, and the conversation.

And so we would have low points too, and the pattern of our trip would emerge: tumultuous meltdown followed by unexpected, inorganic calm.  Low points like Micah contracting food poisoning the second night we were there, like Jonas’ lack of understanding about the lack of available wifi in Mexico, like the high-energy of the city that would attack his senses, like the disruption of routine and the time change, all of which would lead to an inevitable spiraling meltdown.

And then we would arrive in San Diego.  And then there would be calm…inorganic calm.

TO BE CONTINUED…

High point!!!! Los primos/The cousins

The warmth of the sun’s rays unevenly warming my arms.  The intense white light created by its rays as they tickled the crests of each wave on the bay.  The smell of bourgainvillea’s caught on the breeze.  Micah’s beloved agapanthus growing in clumps along the edges of nearly every flowerbed we passed.  The birds of paradise in their curious regal splendor dotting the grounds of our hotel.  Yes, this was home, and the flood of memories absorbed my mind, as my senses recalled to the forefront of my brain, what my emotions had long tucked away safely in files immediately sealed in an effort of survival.

It was beautiful.  And wonderful.  And sad.

Tears collected and tugged at the corners of my eyes.  That familiar burning lump found its way to my throat.  I would not cry.  I would not mourn this place.  I would not allow these memories to send me into regret over the tough but necessary decision to move back East.

Who’ll take care of him while we’re working?  Who is as vested as we are?  What’ll happen?  We can’t do this in a vacuum.  We need help.  We can’t continue like this.  It’ll swallow us all whole, the autism.  And what about the behaviors?  Our kids, how will this effect them?  And what about Jonas?  We only get one shot to do this right.  It’s his future, his potential.  The schools here, what about the schools?  My career?  My commitments?  I can’t be both places.  I can’t do both well.  This back and forth is killing me.  I simply cannot, will not continue to service other people’s children instead of my own.  I cannot.  IT’S NOT FAIR!! I can’t do this anymore.  I can’t.  And what of our lives?  It’ll swallow us all whole, the autism.  But East?  It’s a chance.  It’s hope.  It’s support.  It’s scary, and it’s hard, so hard.  I know.  But, we have to do something.  We have to.  What other choices do we have?  Let’s do it then.  

I couldn’t.  I wouldn’t.  I could not rue this decision.  I would not cheapen our decision no matter how hard it was, no matter how hard it continues to be.  I would not regret this place.  So I swallowed deep the lump, the tears, the lament.

I would enjoy my days in this place that now felt worlds away from my day-to-day life, even as I strolled along her streets, taking in her wonders.

I would enjoy the time.  Enjoy it, enjoy it, enjoy it, I told myself over and over again, because it won’t last forever.

******

TO BE CONTINUED…

Before 5:30am we had returned the rental car, shuttled to the airport, checked in, and had endured several levels of hell in the security line at the airport where I was first subjected to an invasive pat-down while holding the hand of my crying cherub because I was carrying two juice box sized containers of Rice Dream for my lactose-intollerant cherub, and then left to board the airplane with only my children and our slew of carry-on items, since my husband was pulled from the security line and forced to head back to the check-in counter.

He did make the plane, however, as the Captain on the Southwest Airlines flight assured me that he would.  This amazing man had seen me standing post-violating pat-down fruitlessly, silently holding back tears in the boarding area, three shaky angels in tow.  We were both waiting to board the same plane.  And maybe it was my tears, or the blue preboard card that indicated that someone in our party has a disability, or maybe I just looked completely mired and deflated and helpless, or maybe this is an “all of the above” situation, but in any case, he approached me, offered me comfort, and though I did not speak the fear that weighed imminently on my mind, assured me that come hell or high water, or hand-plucking my beloved from the security line, that my husband would be joining us on the flight home.  And join us, he did…just in the nick of time.

In that minute, I became a vehemently loyal Southwest Airlines customer, because I’m certain that this Captain made all things possible for us on this return flight home.  And the comments and knowing looks from the rest of the onboard crew confirmed my suspicions.

The rest of our flight, and connection aboard Southwest would run eerily smooth.

Our entire trip had been fraught with this stream of relentless paradox: tumultuous meltdown followed by unexpected, inorganic calm.

****

All of my children have always been really good travellers, exceptionally good on flights.  Over the many years of travel with 3 children, we had only ever had one bad leg of a trip.

(The time that we nearly missed our connection in Texas to San Diego and moments before boarding, Jonas had projectile vomited on my husband, and the sippy cup had been left behind on the previous flight in the grand rush, and the portable DVD player’s battery died minutes later, and Jonas having no tolerance at this point, desperately looking for comfort, confusing the tray-table for a portable DVD player and requesting over and over again that we open and close the table expecting to find Muno and Brobee on a screen at each subsequent opening, and being disappointed each time, yielded screams and shrieks and in turn stares from other passengers…Yeah, that was a doozy of a flight, that one there.)

So, I was what I thought adequately prepared when we flew out of Boston and for a moment on the flight from Boston to Chicago where we had a layover with no change of plane on our way to San Diego, I sat back, gazing on my sleeping boy, fully occupied and content Micah and Sole, and hubby and thought to myself, ”What was I worried about?  Look at this.  I’m one lucky gal.” Half a second later I scolded myself for potentially jinxing the remainder of the flight.  And jinx it I did.

Jonas didn’t understand the layover.  He awoke as we were in our final descent to Chicago, and was shaken by the fact that nearly everyone on the plane had deboarded, but we remained in our seats.  He told me that he wanted off.  I explained that we were picking up more people so that we could continue on another plane ride to San Diego.  He was confused.  He wasn’t buying it.  I let him get out of the car seat to stretch his legs.  This was the beginning of the turmoil that would lace the next 5 hours, where we would teeter on the brink of full-on meltdown, where I would coax him away from the edge for a few minutes before I would find him beginning to free-fall into the emotional distress once more.  And at each turn I would yank him back to reality, to calm for another minute, before he would begin to free-fall again.

Up.  Down.  Back.  Forth.

Bungeeing between here and there, dangling over the infinite abyss of no return.

TO BE CONTINUED…

Jonas, kneeling in the cramped space in front of his seat watching a new DVD, somewhere over the Midwest. One of my attempts at calm.