DNA – Allowing My Boy to be His Own Dinosaur

Published December 1, 2017 by Jen Rosado from MyAlternateUniv

I can’t help it. It’s very much in my nature to observe, interpret, analyze, analyze some more, maybe over analyze a little, and then draw some conclusions. The teacher side of me wants to explain. The writer in me looks for the story. The dreamer searches for deeper meaning.

But I’ll admit there are times when my attempts to tease out the story or provide some kind of philosophical analysis only detract from the moment – times I say too much when I should just let the moment speak for itself.

Because my son is non-verbal, I am always speaking for him. I observe his behavior. I interpret and analyze it. I draw conclusions about what he wants and needs. I’m like the thought bubble above his head, providing context and meaning, as close as I can gather from the clues he’s providing.

However there are holes in the story, missing clues. He has no way to verbalize his internal world of thoughts and feelings – I can only make my best guess at them. And when his behaviors are interpreted through my brain they are sometimes tinged by my experiences, expectations, and biases.

It’s like when Jurassic Park scientists fill in the holes in the dinosaur gene sequence with frog DNA – they get something very close to a dinosaur, but it’s not really 100% dinosaur.

So I’m sharing another of my boy’s favorite YouTube videos. And, oh! How I wanted to analyze the crap out of it because of its profundity and timeliness and timelessness…fill in all the gaps with my parental pride and amazement and perhaps a little philosophical frog DNA about my boy being a “dreamer” like his mom.

But I thought this time I would just let my son be his own dinosaur with as little of me in the mix as possible.  Let him “speak” for himself.

The song is “Imagine” by John Lennon, performed by Playing for Change (my son’s favorite YouTube channel which brings together musicians and singers from all over the globe to “connect the world through music”).

Enjoy!

 

 

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Comfort – Dark Matter and the Light of Stars

Published October 5, 2017 by Jen Rosado from MyAlternateUniv

Albert Einstein theorized that the dark, empty space of the universe is not “nothing”, that empty space may, in fact, possess its own energy. Scientists have called the “something” of empty space “dark matter” and called its energy “dark energy”. And although they still question and explore the nature of space as it relates to the expansion of the universe since the Big Bang, they’ve used observations and calculations to arrive at an approximate and theoretical model of composition of the universe:  68% dark energy, 27% dark matter, and 5% normal visible matter (stars, planets, us, and everything we can see).

This fits with what I see in my skies at night. The skies I see are mostly dark space flecked with occasional stars and planets. The stars are brilliant and beautiful, yes, but separated by oh, so much darkness, with only a small amount of what one might consider the light of “normal matter”.

When my son was born, I dreamed what our life would be like, what his future would hold.

I never thought my husband and I would be taking a PMT class to learn the proper ways to restrain my son so he won’t hurt himself or others during a meltdown.

I never thought we’d be shopping on-line for a helmet to protect his head from self-injurious behaviors.

I never thought I’d wear long sleeves no matter the weather to cover scratches, bruises, and bite marks.

I never thought we’d talk in hushed voices over dinner about the possibility of a residential home if he got too big for us to handle.

Our life has drifted so far from what would be considered “normal matter” that for months I’ve been too distracted by dark matter, too overwhelmed with dark energy, too consumed by the blackness of an endless void of fear and anger and guilt, of helplessness and hopelessness, to bother to look for the light of stars.

“I can’t believe this is my life,” I find myself saying. “I can’t believe this is our life.”

I can’t believe this is his life.

Yet my son, the one who is suffering the most – from sensory integration problems we don’t understand, from painful, crippling anxiety, from overwhelming frustration at his inability to communicate – he is still searching for and finding stars every day.

Over the past few months, my husband and I have introduced our son to YouTube videos of different kinds of music and dance – from classical to contemporary. Many videos he is not interested in. Others he watches over and over and over again – silently, intently, occasionally bouncing or rocking during a favorite part.

It never ceases to amaze me, his choices of videos. He is unaware and uninfluenced by what typical 8-year-olds are supposed to like, and although many of his choices are simple children’s songs, sometimes his choices are timeless and profound, showing a wisdom and sophistication beyond his years.

He finds what speaks to him, what comforts him. He finds his own stars.

And like stars, sometimes they stand alone, but other times they appear to form a pattern, a constellation through which stories or messages can be conveyed.

For several weeks recently, my son watched these four videos again and again, and they do, indeed, seem to create a constellation. (I encourage you to watch each one all the way through. I’ve seen them what seems like a hundred times by now, yet I’m still inspired and moved, getting all teary-eyed like the sensitive sap I am.)

“Ode to Joy/Ode an die Freude”, “Jesu, Joy of Man’s Desiring/Joy to the World”, “Happy”…

Yes, it’s a constellation of happiness, but it’s really more than that. These songs are jubilant, triumphant, victorious celebrations…defiant declarations of joy.

Keeping in mind the fact that my son is nonverbal and has limited understanding of the English language (no less a foreign language), clearly it’s not the words but something about the music and the instruments, the singing and the dancing, something that breaks through the confused messages of his disorganized neurons to bring him calming comfort.

To bring him happiness.

For him, music is like those powerful, burning spheres of hydrogen and helium, the light from which travels light years through darkness to shine as stars in our night sky.

I’ll admit I haven’t looked for stars lately because, quite frankly, I don’t want to.

I’m angry.

I don’t want to be comforted. I want things to be different.  For now I’m content to stand in the maelstrom of our personal Pandora’s box, screaming expletives into the wind.

My boy is the keeper of the little light in the bottom of that box.

His behavior during intense meltdowns is not who he is.

He is an intelligent, complex, and deeply sensitive child.

He is a hero who defies the darkness.

He is a seeker of stars.

He finds comfort in their light and shares it with me.

“Dark Energy, Dark Matter”, NASA, https://science.nasa.gov/astrophysics/focus-areas/what-is-dark-energy, Sept. 15, 2017.

Communication – The Detours Connecting One Universe to Another

Published April 29, 2017 by Jen Rosado from MyAlternateUniv

Nothing frustrates me or gives me more anxiety on a journey between point A and point B than having my forward momentum slowed or stopped by the noisy, confusing gridlock of traffic.

So crazy it makes me that I often take the next available exit and try to feel my way through back roads and byways, guided by road signs, GPS, and even old-fashioned paper maps. Despite the traffic lights and stop signs, the slower speed limit and occasional wrong turn, a detour can be far less stressful to me than remaining stuck, mindlessly inching along, bumper-to-bumper on the jam-packed highway.

Inevitably, I arrive at my destination much later than expected, but eventually I do get there.

I imagine for the average child, learning to speak is much like traveling on a highway on a “good traffic day”; some children ride in the fast lane, others in a slower lane, but they hit their milestones and arrive at functional speech within a statistically average amount of time.

That journey can be quite different for a child with autism.

My son has spent much of his journey stuck in traffic, his brain overloaded with information from his senses – a confusing, noisy gridlock of signals that are difficult to filter and process properly. And a mind constantly distracted by the need to lessen overwhelming sensory stimuli (and the accompanying intense anxiety it creates) is a mind unavailable for learning.

We spent years wondering when, or if, he would ever learn to speak. Anytime we heard of a case of an autistic child learning to speak attributed to some new approach, we felt a resurgence of hope. Here was a new direction to try, a new mountain to climb with a world of possibility waiting on the other side. Maybe this was the magic detour that would help my son find his way!

But autism presents uniquely to each individual, so it should come as no surprise that what works for one person might not work for another.

Looking back, we tried many different techniques and therapies – some more helpful than others, some not helpful at all, and some helpful but not necessarily effective if presented too early – like pointing out a detour far ahead when our boy still hadn’t even found an exit off the congested highway. For a long while, it seemed he didn’t even notice us waving and shouting, trying to get his attention from the side of the road. He just wasn’t available for learning in those earlier days.

This universe is composed of small victories, not magical, overnight successes. Here, movement takes the form of baby steps, uneven and unbalanced – three steps forward then two steps back, with the occasional fall on the bottom. “Miracle breakthroughs” are the result of hard work – inches of slow, almost imperceptible progress made over days and months and years that eventually add up to a milestone.

But I’ve learned that hard fought battles make those small victories feel like miracles.

A few months before his sixth birthday, we finally heard our son speak. His voice was the most beautiful sound – a delicate, musical whisper, perfect in its imperfectness.

You might remember that my son’s “first” first word at 12 months was “clock”. Well, my son’s “second” first word at five and a half years old was…

The alphabet.

Not all at once, mind you. He started (obviously) with A, then B, C, and D, and on from there. He loved the alphabet song and capital and lowercase letters and the way they lined up side by side in straight, neat rows to form words. (A boy after my own heart, I must say).

It was then that I truly began to appreciate the amazing complexity of human communication. “Speaking” doesn’t always mean “communicating”. The alphabet is not a word that conveys meaning. Yet while the sounds he was making did not express a thought or need, he was actually communicating – by looking to me for approval or celebrating his accomplishment with claps and cheers. So indeed, through the alphabet, my son was interacting with his world.

 

 

The fact that he had learned the alphabet song offered a clue to the inner workings of our boy’s brain. We discovered that my son learned best when words were taught through songs or paired with visuals or sign language. Music, movement, and pictures were signposts guiding his brain through detours, like a GPS “recalculating” the route to get around the traffic jam on his neural highway.

Words popped out intermittently in the months that followed. He said “cup”, “bowl”, “cookie”, and “baby”, all accompanied by their correct signs, apparently stored in his memory banks after years of watching sign language videos from “Signing Time” and “Baby Einstein” over and over.

To our confused delight, he loudly sang, “Ha-So-Me-A-Toe” for weeks before performing the correct movements to indicate it was his personal rendition of “Head, Shoulders, Knees, and Toes”.

Then a few months after his sixth birthday, my son said his first meaningful word – “more”. Not some boring, monosyllabic, 2 second “more”, mind you, but a long, drawn out, sing-songy, “auditioning for the musical Oliver Twist” sort of “more”.

He used it in the correct context as a request and accompanied it with the correct sign. It was an exciting breakthrough!

So that’s it, right? I mean, once he says a word and understands the concept that saying a word as a request causes the big people around him to give him things he wants, that should be the key, the light bulb, the lightning bolt. Like Helen Keller’s sudden understanding of the word “water” signed in her palm at the water pump, surely this was the moment of connection from which all other words would flow.

That’s of course the idea we always had – that once our son made the connection between words and the world around him, more words would quickly follow. “Almost overnight,” people would joke, “he will be speaking in sentences, and you’ll be wishing for a moment of peace and quiet!”

But autism and language and human behavior are mysterious and complex. It’s as if our boy had arrived at his language milestone after a long detour only to find himself surrounded by a thick fog. For my son, processing the signals from the outside world, and even from within his own body, is not an easy task. Making that connection and formulating some kind of response, whether verbally or with signs or picture cards, requires a great deal of focus and concentration. It does not come easily.

Naturally, motivation becomes a big factor, because if you work really hard at something it helps to know you will be getting something really great in return. Otherwise, you’ll find an easier way to get what you want that doesn’t require as much effort. And therapists through the years have discovered something that we, his parents, already knew to be true – our boy is not motivated by many things. Food items hold little incentive for him, and toys only motivate him in their novelty.

The truth is, offering incentives to move forward in a thick fog may get him moving again on the road to communication, but his progress will always be slow. Even now, a year and a half after that word “more”, he’s still inching his way carefully through this confusing territory.

So while we continue to cheer our son on as he makes his slow and steady journey on the road to communication, we also try to lift the fog a bit and make the going easier. His speech sessions are paired with OT or PT, music is incorporated into his lessons, and his therapists are trialing different communication devices and programs to find the perfect match for his learning style.

We need to meet him where he’s at, drive at his pace, and guide him the rest of the way.

After all, in teaching my son to communicate we’re not just hoping to hear his voice, we’re hoping to understand his wants and needs and interests, to get to know all there is to know about the wonderful little person he is by building roads and finding detours to connect his universe to ours.

 

Stress – Learning to Deal With Sh*t (With the Help of a Dung Beetle)

Published March 18, 2017 by Jen Rosado from MyAlternateUniv

I read somewhere that people who have a positive attitude live longer. If this is, indeed, the case – I am screwed.

As far as I can tell, I’ve pretty much been a crotchety old person complaining about the music being too loud and telling people to get the hell off my lawn (figuratively speaking, of course) for most of my adult life.

Don’t get me wrong – I’m generally a nice, friendly person in my own guarded, reclusive, “New England introvert” sort-of way. It’s actually my intense emotional sensitivity that causes me to become overwhelmed and thus more circumspect and wary. I feel all emotions deeply. I brood, I ponder, I analyze, I worry.

Everything has a weight. Even little things when added to the pile make it that much a heavier burden to bear. And when that pile gets too heavy? Let me tell you, my friends, there are times when I’m in a truly foul mood.

Oh, I’ve heard my share of tut-tutting over my negativity and well-meaning appeals to “just look on the bright side” and to “consider those less fortunate”, the assumption being that surely if I considered the plight of others compared to my own I would realize things don’t suck as much as I think they do and I’d be more grateful.

The thing is, we sensitive folk are already well aware of injustice and suffering and despair in the world. It’s part of the pile – trust me.

My problem isn’t a lack of perspective or an inability to recognize all I have to be thankful for; my problem is how do I cope with the increasingly heavy pile of life’s stresses?

And it’s not just the day-to-day stresses anymore. Lately, this Universe has become a colder, darker place, with looming threats and uncertainty beyond my ability to control. I’ve become mired in a pile so deep, at times I feel as though I’m almost unable to move. There’s an instinct to protect myself, to pretend things don’t bother me, to ignore any unpleasantness with the hopes that the world will simply right itself again.

Sometimes in dark and troubled times, comfort and inspiration can come from unexpected sources. In this case my unexpected source of comfort and inspiration happens to be “Scarabaeidae” – the common dung beetle.

I caught a glimpse of this plucky little insect on my son’s “Video Touch” app. It was a short video clip of a diligent, determined dung beetle pushing a perfectly formed sphere of poop over a pebbled landscape. He was clumsily making his way along the ground with his front legs while pushing the poop ball with his back feet. At one point in his earnest travels, he lost his balance and landed on the hard, black shell of his back. Front legs flailing wildly in the air and back legs digging backwards, he desperately hopped his body about until he leveraged himself against a small rock, flipped over, and scurried back to his poop ball to continue his journey.

I’m not normally a fan of insects, but I must admit I was impressed. At this point in my life, I am barely able to keep my shit together. Yet this amazing little insect is able to shape his shit into a tightly formed ball many times his own weight and then, with great effort and persistence, roll it quickly from the dung pile from whence it came.

Not only that – he rolls his poop ball in a straight line so as to not accidentally circle back and end up back at the dung pile where other beetles might try to steal it from him. How does he move in a straight line? Turns out, he uses the polarization of the sun during the day and the moon at night. And on moonless nights, the dung beetle guides himself using the Milky Way, the first animal shown in scientific studies to navigate by the stars.

In fact the more I researched this insect with a penchant for poop, the more I came to appreciate him on a philosophical level.

There are three types of dung beetles – dwellers who live in dung piles, tunnelers who bury their poop underground where they find it, and rollers who make their poop into balls and roll them away. In a strictly metaphorical sense, I believe “roller” dung beetles handle their shit better than “dwellers” who wallow in it and “tunnelers” who bury it.

For a while I was a “tunneler”, pretending, putting on a happy face, trying to bury the stress and anger and all those other negative feelings I thought best denied or hidden. But let’s be real – that shit doesn’t stay buried for long.

Right now, I’m a “dweller”, exhausted from wading through an overwhelming amount of crap, unable to pick a direction in which to focus my energy, and, quite frankly, beyond the point of pretending everything is OK and that I’m not actually stuck in a very stinky place.

I aspire to be a “roller”, to sort through all my stresses and worries, discard those I have no control over, get my shit together and form it into a tight ball I can roll with. I need to take action, pick a direction, and hold a steady course so as to not become entangled in conflicts and dramas at the dung pile. I need to focus my precious energy – there are many battles to be fought, but to my personal poop ball I will only add those that hold the most meaning for my family and me.

So now, emboldened by the dung beetle, the scarab, the Ancient Egyptian symbol of transformation and renewal – it’s time to break free from the pile.

Attempting to roll with my poop ball will be a clumsy endeavor, with lots of tripping and falling and flailing about with my vulnerable underbelly exposed, surrounded by a dusty cloud of curses and swears (and the occasional snark-filled tirade). Perhaps in those moments of frustration, I will take comfort in the image of a little dung beetle, sitting atop his sphere of poop, gazing at the heavens, setting his course by the stars.

Dung Beetle (courtesy of giphy.com)

 

Sources:

Dell’Amore, Christine. “Dung Beetles Navigate Via the Milky Way, First Known in Animal Kingdom.” National Geographic, January 24, 2013, http://voices.nationalgeographic.com/2013/01/24/dung-beetles-navigate-via-the-milky-way-an-animal-kingdom-first/ . Accessed March 17, 2017.

“Dung Beetle gif.” Giphy.com, uploaded by: gifhell.com. from BBC One: Hidden Kingdoms. http://giphy.com/gifs/ball-dung-ha0ihj0UdzqP6 . Accessed March 18, 2017.

“Dung Beetle.” Wikipedia, last modified February 14, 2017, https://en.wikipedia.org/wiki/Dung_beetle.  Accessed March 17, 2017.

Wits University. “Dung Beetles Follow the Milky Way: Insects Found to Use Stars                   for Orientation.” Science Daily, January 24, 2013, https://www.sciencedaily.com/releases/2013/01/130124123203.htm . Accessed March 17, 2017.

Perspective – Stories Told By Trees in a Giant Forest

Published August 22, 2016 by Jen Rosado from MyAlternateUniv

As the saying goes, sometimes it’s hard to see the forest for the trees – you concentrate so hard on the details that you miss the big picture. By the same token, it’s possible to notice the whole while ignoring it’s individual parts – seeing the forest but neglecting to acknowledge the trees.

Then there are those moments when you see both at the same time. It’s all about perspective.

I remember it clearly. I was maybe 7 or 8 years old, sitting on the floor of my bedroom, deeply engrossed in my activity, carefully cutting pieces of cardboard and taping them together to make horses and farmers to go with the cardboard barn I had made.

I could play like this for hours in my quiet, safe cocoon, fully content to be alone with my creativity.

Carefully I drew a face and clothes on the farmer with a black magic marker then folded his legs so that he could ride his cardboard horse. My world consisted of just this activity at that moment – the farmer, the horse, the barn – a little cardboard world of my own creation.

As I began cutting out the next addition to my farm, my concentration was interrupted by music floating through the wall that separated my bedroom from my brothers’ bedroom, and with the music came a mind-altering realization: While I sat playing on the floor of my room, thinking my thoughts, doing my thing, my brothers were in the next room listening to music, thinking their thoughts, and doing whatever it was they were doing.

It was a weird, out-of-body moment, a new awareness that this was not my world with all the people around me playing a specific role in it – “brother”, “Mom”, “Dad”, “teacher”. Indeed, all those people had their own world, their own thoughts and likes and dislikes. Some had been alive and thinking thoughts and doing things before I was even born!

At that moment, my egocentric understanding of life expanded. This realization didn’t diminish my feelings of self-worth – it instead made me more open to understanding others and seeing different points of view.

I have had several of these “shifts in perspective” throughout my life, moments when I understand something on a cognitive level that on its surface seems completely obvious but for a lack of recognition – like suddenly seeing both the forest and the trees.

I remember being in elementary school, my teacher quietly asking if my parents could afford to pay for the field trip to the circus, the different colored ticket I carried to the cafeteria every day for reduced-cost lunch, the food stamps and government surplus food my family qualified for – all this fed into my perception that I must be poor. By the time I was a young adult I had built a mythology on the idea that I had worked hard to overcome humble beginnings to achieve my goals.

In my mid-twenties, I interned in an urban school in a section of the city known for socioeconomic challenges.

A moment of clarity came as I tutored a third grader who was reading at a first grade level. He was struggling more than usual this particular day, and he finally looked up at me and said, “Miss, my dad is in the hospital. He OD’d last night. The ambulance came and everything. I’m really worried about him.”

That was the moment I stopped congratulating myself for pulling myself up by my bootstraps.

Because I hadn’t.

Comparatively speaking, my upbringing had been idyllic, charmed even, with the opportunity to play, and be a kid, and create farms out of cardboard – without the burden of grown-up stresses.

Admitting this fact did not diminish the pride I had in my accomplishments – it instead made me more aware of disparity and how vastly different life experiences can be.

And here again, my son and his diagnosis of autism have pushed me out of my zone of comfort into this alternate universe and an entire community I previously never knew existed, a community familiar with struggle and need.

Autism does not discriminate. The workshops, seminars, and support groups I’ve attended are a mix of people of all races, ethnicities, religions, and social classes. We share. We listen. We empathize. Our commonality is that we are all parents of children with special needs, however each of us brings our own history, our own unique personalities, talents, and challenges.

Beyond statistics and numbers, beyond stereotypes – Each of us is a story.

A few months after our son was diagnosed with autism, my husband was laid off from his job. It was 2011 and “The Great Recession” was in full swing, so our story was not unique. But then again – our story WAS unique. The emotions, the fears, and the complications that enhanced them were very much our own.

After my husband found another job and the intense stress and uncertainty subsided, I became active in social media again, only to be confronted by a barrage of memes and comments aimed at shaming the poor, the unemployed, and anyone receiving assistance from the government, despite it being a time of great need. I pushed back, not just in defense of myself but in defense of all those nameless, faceless people comprising the statistics and stereotypes.

Because the people posting these memes were my friends, they responded apologetically – of course they didn’t mean me. But I understood – they didn’t mean me only because they knew me.

To anyone who didn’t know me I was part of those statistics, recently but also when I was a child.  So, too, was the father suffering from addiction and his son who loved him, the struggling parents in my support groups, and even my son with his special needs – all trees in this giant forest.

It seemed on the surface to be so obvious but for the lack of recognition: To have the complexities of each human life reduced to a number or assigned a stereotype, was to deny each unique history, each individual story.

Understanding this on a more global level does not solve the problems of the world nor deny their existence – but it has given me the perspective to view social issues through compassionate eyes, to dig deeper even when my first reaction is anger or judgment.

I’ll admit, I sometimes find this level of awareness overwhelming. So much suffering and need; so much inequity and injustice. It would be easier to retreat to a place of safety, ignoring the complexities of problems by dismissing them with sweeping statements of condemnation.

In an increasingly cynical age, when compassion is seen as naivety and pithy clichés seem to have lost their pith, it takes a surprising amount of courage to listen to the stories told by trees in a giant forest.

But I will listen, and I will continue to challenge perceptions with those stories in the hope that others might catch a glimpse of the world from another perspective… and maybe even be convinced to stay and share some stories of their own.

 

photo courtesy of Pixabay

photo courtesy of Pixabay

 

Behavior – When “Totally About To Lose Your Sh*t” Becomes a State of Being

Published June 6, 2016 by Jen Rosado from MyAlternateUniv

I’m being completely honest when I say that for all the “how to raise a healthy baby books” I read when I was pregnant, I did not read one single book on child behavior, discipline, and parenting. First of all, my parents kept 6 of us in line when we were growing up, so I figured I’d just follow their example. Secondly, I was an elementary school teacher and had read many books on child psychology and classroom management. As a teacher I was strict and structured, but loving and fair, and once my class understood my expectations we were able to do fun things.

Strict, loving, fair, and fun.

If I could control classrooms full of 9 and 10 year olds and get them to learn stuff and actually enjoy it, then parenting ONE kid? Pffft! How hard could it be?

Yup, when it came to the behavior of my future child, I was bursting with the self-assured confidence of one who knows they have set sail on a ship that is absolutely unsinkable.

From my vantage point on the deck of my absolutely unsinkable ship, I could glance askance at the red-faced, “totally about to lose her shit”, grocery store mom with two screaming kids in tow and vow with certitude that that would never be me.

Now I’ve mentioned in previous posts about how Fate delights in serving up a healthy helping of humble pie in response to statements of unabashed overconfidence. I’ve also warned against passing judgment on those who find themselves stuck on a dinosaur-filled island, lest a T-Rex or a few velociraptors be released in your general direction. I’ve also suggested being pragmatic when planning for a zombie apocalypse, because the grasshopper that sings instead of making preparations is destined to be eaten alive.

These are all topics I’ve explored since arriving in my alternate universe. Keep in mind that at the time of self-assuredness described above, my son had yet to be born. So although I had battled anxiety demons my whole life up to that point, I was (comparatively speaking) still but a singing grasshopper in a dino-free, unsinkable universe.

The reality of just how ill-prepared I was for my son’s behavior became apparent when he was around five years old. For now, let’s abandon the zombies and dinosaurs and stick with just the Titanic metaphor, which actually makes sense since an iceberg is quite analogous to the challenging behaviors that accompany my son’s autism.

The “challenging behaviors” to which I’m referring are aggressive behaviors like scratching, hitting, pinching, and biting that some (not all) autistic individuals engage in. If you’ve heard the statement “just the tip of the iceberg”, you know it means that you are seeing only a small part of a much larger whole. So it is with my son’s behavior – it is the tip of the iceberg, the visible part above the surface. The much larger part, the causes or “antecedents”, are below the surface.

My son is non-verbal, and he sometimes uses these behaviors to show his frustration at not being able to communicate basic needs and feelings. Because of his sensory issues, he might act out aggressively as a means of defense from over-stimulation in an overwhelming environment. He might also lash out to escape or avoid a task that is confusing, difficult, frustrating, or simply something he doesn’t want to do. It could be a combination of all of these things…or none of them. Sometimes with his “icebergs” we can only guess at the causes that lie beneath the surface.

If this was the maiden voyage of an average ship in average seas, I would be hanging out on the poop deck, having a drink with “angry, red-faced grocery store mom”, commiserating about how much our kids are driving us nuts.

But my story has icebergs. My ship of confidence is going down, and we’re sending up flares and distress signals, hoping help will arrive in the form of a behavior therapist or autism expert, someone to lead us to calmer waters.

Let me tell you – to fall from such lofty heights and plunge into the icy waters of reality below has been shocking and painful, the most chilling part being the guilt that accompanies the recognition that I am far from being the perfect parent my son deserves.

I, more than anyone else in my son’s life, should be patient and understanding about his behaviors. But the truth is when he is pinching and punching and biting and scratching me…I’m angry. And those red-faced, “totally about to lose my shit” moments I swore I’d never have? Some days that is my entire state of being.

And therein lies my glacial guilt, that icy realization that I’m not kind enough, not patient enough, not understanding enough…that despite the fact that I love my son more than anything else in this world, I’m still failing miserably as a parent.

I’m inclined to believe that sometimes when Fate sets you adrift in frigid waters, the Universe aligns to throw you a life preserver.   Because in one of my lowest, most guilt-ridden moments, I happened across this quote from Fred Rogers:

“Love isn’t a state of perfect caring. It is an active noun like struggle. To love someone is to strive to accept that person exactly the way he or she is, right here and now.”

Well, that’s just it, isn’t it? Love is an active noun. It’s not static, exact, or definable.   It has no limits or boundaries to mark its presence or outline its shape. It grows, moves, evolves, transforms. And in love, as in nature, such processes require struggling and striving and enduring.

Even when your love for someone is as deep and wide as all the world’s oceans, it isn’t like you’re floating in the tropical Caribbean Sea every day, basking in the warm, blissful state of “perfect caring”. Yes, even with a love so deep and wide, you may still end up spending some time treading water in the iceberg-filled Arctic. Those days can be a mental, physical, and emotional struggle.

And so we struggle and we strive, my boy and I.

I wake up every day and strive to better understand and accept my boy’s icebergs. My boy wakes up with smiles and hugs – his way of letting me know he’s striving to accept my mistakes and failures, too.

We are doing the very best we can just as we are, right here and now. It’s not perfect, but it is love.

*     *     *

It’s been a challenging day, and I’m rocking my son to sleep like so many countless nights since the day he was born. He is 6 years old now and 50 pounds, his head resting on my shoulder, his body stretching down past my knees. My arms are wrapped around him, my cheek resting on his head.

His chest rises and falls – his breathing, slow and rhythmic, like waves on a beach.

Coming in.

Going out.

I smell the familiar scent of his hair and feel the comforting weight of his body, his heart beating right next to mine.

The waters are calm. Not an iceberg in sight. We gently rock in the warm glow of his musical projector.

We drift and float,

lulled to sleep in this moment of perfect caring.

 

Image courtesy of Pixabay

Image courtesy of Pixabay

Works Cited:

Rogers, Fred. “The World According to Mister Rogers – Important Things to Remember”. New York: MFJ Books/Family Communications, Inc., 2003.

Nature – Surprising Instincts of a Praying Mantis and a Six Year-Old Boy

Published March 27, 2016 by Jen Rosado from MyAlternateUniv

About three miles from our house there is a white Congregational Church with a tall steeple, giant pillars, and huge, rectangular windows. And behind this church is a shady playground with swings and climbers and plastic houses and a sandbox and seesaws and those bouncy horses attached to giant metal springs in the ground. And around this playground there is a chain-link fence. And on this fence, on this particular summer afternoon, there sat a praying mantis.

I imagine this praying mantis was feeling pretty confident that day, sitting atop that fence, maybe hoping for a yummy insect meal to come her way. Sure there were predators about, in the skies and on the ground. But she didn’t feel overly concerned because her great mantis ancestors had passed on a clever adaptation that offered her protection – the camouflage of a leaf-like body shape.

She knew she wasn’t the foremost predator on the food chain, but in the insect world she was pretty hot shit. After all, praying mantises sometimes ate their prey alive. The females of her species had the reputation for cannibalizing their mates. Some large mantises could eat birds – BIRDS! Not that SHE was capable of that, but still… those are the instincts that demand respect in the world of nature.

She stretched her forearms, rotated her head to take in her surroundings, rocked forward and back a few times on her long, spindly legs, and sighed, settling in for a lazy, relaxing day in the sunshine atop the fence that surrounded the playground behind the church about three miles from our house.

* * *

My son has non-verbal autism.  He LOVES to be outside. He loves nature. He runs with his face to the sky. He smiles and laughs at the wind in the trees. He lies back in the grass or mud or snow, just lies there – listening, feeling, being.

One of my son’s little quirks is that he likes to carry objects around in his hands. These objects can be small toys, or pieces of ribbon, cellophane, or fabric – anything that has an interesting texture. Outside he might carry a twig or a leaf or a long, dry stalk from one of the hundreds of tiger lilies that have taken over our yard.

I can’t say exactly why he carries objects; it’s just something he has done since he had chubby, saliva-covered, toddler fists. Maybe the objects are comforting to him, helping him transition from one space to another. Maybe they distract him from an overwhelming world, giving his hands something with which to “fidget”. Or maybe they just fascinate him. Who knows?

He carried an object out to the car on that warm, summer afternoon – a crinkly straw wrapper from a Capri Sun juice pouch. He dropped it as soon as he climbed into his car seat, trading it for a green, satin ribbon he found on the back seat. I buckled him in as my husband started the car, and soon the three of us were on our way to the playground behind the Congregational Church in town.

This playground had become a favorite of mine since the first time we visited it with one of my son’s therapists. For one thing, a gigantic maple tree shades a good portion of it, which is unusual for playgrounds in our area. It has a wide variety of equipment for children to play on. Although popular on the weekends, it is often empty during the week. And best of all, it is completely fenced in, meaning I can actually relax when I bring my son there instead of hovering close by and chasing him every time he bolts. Here, he’s free to roam and run as he pleases, without Mom cramping his style.

He sprinted through the gate, dropping his green ribbon as he stopped to examine the bouncy horses with their huge metal springs. Then he took off again, heading for the swings. I stooped to pick up his ribbon, sliding it into my pocket for the car ride home. My husband and I slowly followed our boy, with no particular desire to move too quickly in the heat. We watched as he flitted from one area to another, making happy, excited sounds, occasionally finding a new treasure to hold – a small scrap of paper, a sandbox toy, a blade of grass.

A few minutes later, he slowed his pace and drifted toward the perimeter fence. Even though there were no other children around, he was still drawn to this place of safety. He made his way along the fence, keeping his eyes open for anything of interest on the ground or in the skies.

Near the back corner of the playground, I saw him reach out and pluck a leaf from the top rung of the fence. He walked a few steps then opened his hand to examine his leaf with a look of surprise. After a quick glance, he gently placed his other hand over the leaf, walked back to the fence, and put the leaf back on the exact spot he had taken it from. He scrunched his nose a little, brushed his hands on his pants, and hurried away to find a new activity.

Suspicious, I strode over to see what had prompted my boy to return the leaf from whence it came. And there it was, teetering unsteadily on the top rung of the chain link fence – a large praying mantis.

My voice shot up an octave as I half-breathed, half yelled to my husband, “Holy crap! Praying mantis! Honey, he picked up a praying mantis! Did it bite him?! Do they bite?! Check his hands!”

The mantis appeared to be in shock, and although my son had been very considerate in placing her back on the fence, he hadn’t quite gotten her completely balanced before letting go. Now she was slipping off the side, her legs desperately clinging to the wire links.

Not wanting to freak her out even more, I grabbed a stick and used it to push her body onto the bar at the top of the fence where she could position herself better. And there she stayed, posing as I snapped a few photos with my cell phone.

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My son was fine. The praying mantis was fine.

And an interaction that had amounted to no more than a few brief moments had left me with a feeling of great respect for my son. Because I know what I would have done if I had accidentally picked up an insect instead of a leaf – I would have made a high-pitched yelping sound, dropped it on the ground, and backed away whilst shuddering and carrying on in a ridiculously embarrassing manner. I’ll admit it. I’m not proud.

Besides those like me who would react with fear, consider the fate of that praying mantis in the hands of a more thoughtless, more reckless human.

With all his anxiety and impulsiveness, meltdowns and outbursts, my son’s instinct was to be gentle, to protect, to correct his mistake. He exhibited amazing self-control in that moment, given that he had no idea what he held in his hands and if it posed a threat to him.

Praying mantises are so bizarre, so alien in appearance. I wonder what flashed through my son’s mind as he beheld this strange creature, with its triangle shaped head, bulbous eyes, elongated thorax, and long, serrated, multi-jointed forearms. He had no way to ask; he could only search his own memory for a category in which it might belong and, in a split second, decide what he should do with it.

I admire his decision. I admire his instincts.

How sad it is that kindness, gentleness, and compassion are often viewed as weaknesses. In the natural world, the predator is feared and respected. In the human world, it’s the biggest show of force that is respected, the loudest voice in the room that is acknowledged. Power and dominance are associated with strength.

However, I will argue there is a different kind of strength, a deep, sometimes quiet strength, required to resist those predatory instincts,

to do the right thing in spite of fear,

to be kind and compassionate in an unkind world,

to listen and feel and be, without the desire to dominate.

* * *

On a fence surrounding a playground behind a church about three miles from our house sat a praying mantis recovering from a harrowing day. As the sun retreated leaving a warm, damp dusk in its wake, the introspective, humbled insect put her forearms together and thanked her mantis god that she had survived her ordeal. Her leaf-like appearance had been a disadvantage that day, but she had gotten lucky. She was a changed mantis and promised to pay it forward, vowing to never again bite the heads off her mates in the future. She swiveled her head, sensing night’s arrival, as the skies turned pink, then purple, then a deep, deep blue above the chirping playground behind the sleepy church about three miles from our house.

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photo courtesy of Pixabay

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