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.

Hope – Scratch Your Belly, Shrug It Off, and Head Up the Next Mountain

Published December 17, 2016 by Jen Rosado from MyAlternateUniv

The bear went over the mountain

The bear went over the mountain

The bear went over the mountain

To see what he could see.

But all that he could see

All that he could see

Was the other side of the mountain

The other side of the mountain

The other side of the mountain

Was all that he could see.

 

It’s a simple children’s song, one I remember singing in music class in elementary school. It never held any sort of meaning to me – just a bear going to the top of a mountain to see what was on the other side.

But I’ve been pondering those lyrics since the song popped up in my son’s music playlist the other day. I see that bear’s journey in my mind’s eye, how he struggled up that hill, stopping once in a while to bend forward with his paws on his knees, catching his breath (because he’d be walking upright on 2 legs, of course, like he always did in the songbook illustrations). His heart was filled with excitement, his mind filled with ideas of what might lie obscured from his view – a great unknown. Oh, how he must have anticipated what lay just over the ridge.

Then I imagine him reaching the crest of the mountain and stopping in his tracks to see what he could see, his long, hairy arms dropping to his sides, his shoulders drooping as if suddenly encumbered by an unseen weight. I’m guessing he’d let out a long, frustrated, guttural bellow, the bear equivalent of “WTF”.

All that he could see, all that he could see was the other side of the mountain.

I find myself commiserating with that bear, like I’m standing there next to him, patting his back, saying, “I know it, man. I know it.” And I really do. Because my husband and I have climbed hill after hill hoping this surely will be the one hiding a more tranquil landscape, a proverbial “greener pasture”.

Ever since our son was diagnosed with autism, we’ve attended support groups, workshops, and seminars, spent hours on the phone and Internet, and explored countless treatment options. We’ve brought our son to outpatient OT, speech, and feeding therapy sessions, had him checked for seizures, addressed his GI concerns, attempted several in-home ABA and play therapy programs, brought him for cognitive, psychiatric, and educational evaluations, placed him on medication for anxiety, enrolled him in horseback riding and swimming lessons, and even built him a sensory gym in our guest room.

We’ve climbed every mountain, forded every stream, and followed every rainbow that has crossed our path.

And like that bear, we stand at the top of each mountain and survey a landscape that looks very similar, if not identical to the one we just left.

Are we headed in the wrong direction? Going east instead of west? North instead of south? Maybe we climbed the wrong mountain altogether.

Cognitively, our son is bright. He recognizes his ABC’s and numbers 1 – 10. He knows the names of some animals and the sounds they make. He can sort colors and shapes. He can even recognize some sight words and match them to their correct objects.

Yet he is non-verbal, cannot answer a “yes/no” question or communicate his wants and needs beyond a few picture cards for his favorite foods and activities.

He is 7 years old, but his communications skills remain that of a 15 – 18 month old. He is often discontented, reactive, angry – his behaviors reflect his desperate frustration to understand his world and to express himself. That’s why my husband and I have and will continue to exhaustively search for ways to help him.

We’re not looking for a miracle on the other side of the mountains we climb, just progress – an indication that we’re moving in the right direction, perhaps a few steps closer to a calmer, happier life for our boy.

Sometimes it seems as though he’s made a breakthrough. We pick up speed on the downward slope, and the momentum starts us up that next hill filled with renewed hope, anticipating what lies over the next peak.  But then it’s as if physics takes over – our momentum is slowed by the pull of gravity as we struggle up that next mountain. When we reach the top we see…the other side of the mountain…and more mountains beyond. Our arms drop. Our shoulders slump. We utter assorted curse words in disappointment.

It’s so hard to not get discouraged.

But you remember that bear? All the effort it took him to get to the top of that mountain only to realize there isn’t a land filled with golden honey beyond the crest – just another valley? Well, after taking some time to scratch his belly and gather his thoughts, it became clear to him that he now knew what was on the other side of the mountain, and that knowledge was an accomplishment in itself.  The promise of possibility still lay ahead, so he shrugged off his disappointment and headed off down the other side of the mountain, galloping on all fours toward the next rise. And as the ground gradually sloped upward again, his hope began to grow anew.

“This might be ‘the mountain’. Only one way to find out. Gotta go over it and see what I can see. And see what I can see.“

Picture courtesy of Pixabay.

Picture courtesy of Pixabay.

Fear – Learning to Eat Cake Like a Shark

Published November 14, 2016 by Jen Rosado from MyAlternateUniv

Watching my son eat a cupcake on his 6th birthday was a special event indeed, not only because of the way in which he ate the cake but also because he actually ate the cake at all.

To say that my boy devoured his cupcake like a shark during a feeding frenzy would only be accurate if “said shark”, while circling a particularly tasty looking hunk of tuna, began sobbing with anticipation because he couldn’t begin eating the tuna soon enough, and if once he actually started eating the tuna he continued to cry while swallowing large bites, barely chewing them, and then finally went into full-on meltdown mode upon finishing the tuna, realizing that the tuna was gone and there was no more yummy tuna goodness left to eat…. Then, yes, you could say my boy ate that cake like a shark – an emotionally expressive shark, a passionately dramatic shark – with salty, shark tears and a runny nose.

Although a stranger may have found this over-the-top display a little surprising and maybe humorously unsettling, for me it was a victory celebration after a year’s worth of feeding therapy.

Like many children with autism, my son has always been highly selective with the foods he is willing to eat. His sensory processing issues make him especially sensitive to texture and appearance, while other food aversions are more practical, given his food allergies, intolerances, and frequent tummy troubles, like pain, constipation, and diarrhea.

Naturally a fear built up in his psyche, the knowledge that some foods do not feel good in his mouth and others do not feel good in his stomach. He narrowed down his feeding repertoire to just a few “safe” foods and ate those same foods day after day after day: oatmeal, chicken nuggets, rice & beans, and Goldfish crackers.

When his staple diet at school was reduced to just Goldfish, we decided a weekly trip to feeding therapy was in order. Over the span of a year, his feeding team, consisting of a psychologist, an occupational therapist, and a board certified behavior analyst (BCBA), gently and methodically re-introduced old favorites he had eliminated like avocado and sweet potato, while coaxing him to try new foods like green beans and cake. The process wasn’t always easy for my boy…or for me, for that matter. But he had become too limited, physically and mentally – it just wasn’t healthy.

While feeding therapy helped expand his diet, it didn’t solve the underlying anxiety that permeates most aspects of my son’s life. It’s a neurosis that takes on a life of its own: Fear creates a desire for sameness and sameness transforms into routines and rituals from which any deviation invites danger, uncertainty, and panic. He controls those things that are within his power to ease the fears of the things that are not.

Hmm…control as a means to feel safe and decrease anxiety? That sounds vaguely familiar. Well, it shouldn’t really come as a shock that I totally recognized myself in his behaviors. I understood first-hand: control – or the ILLUSION of control – is so very powerful. Before you know it, the boundaries you construct for safety begin closing in, trapping you, limiting you to an ever-shrinking world.

Flash forward almost one full year: Sting and Peter Gabriel’s “Rock Paper Scissors” tour was coming to the area, and I had tickets to attend the concert with my siblings on my son’s 7th birthday. I had been super-excited for months, counting the days with anticipation, pulling out all my old CDs as well as familiarizing myself with newer songs, and sharing my favorite music videos on Facebook.

About a month before the concert my enthusiasm was tempered by a mischievous itch in the back of my mind – a vague, unnamable worry that conspired with my imagination, growing and spreading, wreaking havoc with my logic center, harassing my amygdala.

Worries about traffic became fears of a terrible accident.

Worries about crowds became fears of a crushing mob or terrorist attack.

The likeliness of something horrible happening may have been statistically small, but that fact mattered little to me. The idea that they were possibilities, no matter how unlikely, was enough to send me into a panic until the risk seemed too great for me to chance. My responsibility was to my son and husband – who cares about a stupid concert anyway?

It turns out I did, because within an hour of cancelling, my emotions went from relief, to guilt, to regret. I had disappointed my siblings, especially my sister who had been looking forward to hanging out with me that night. I had also given up what was perhaps a once in a lifetime opportunity to see two of my favorite artists perform together…all because I was afraid.

I comforted myself with the thought that at least I would be home…safe…like every other Saturday evening. No crowds. No traffic. No possibility of an accident or random act of violence. I’d be free from torturous anxiety.

Free from worry, maybe. But not FREE.

I thought about my son, about how difficult it is to take him places and all the experiences he’s missed out on. I thought about his anxiety-triggered meltdowns and the panic in his eyes when he realizes other people are sharing his space, especially children with their quick, unpredictable movements and loud voices. I thought about how he would much rather be home, safe with Mom and Dad, despite his painful loneliness and boredom.

My husband and I had realized that although my son’s fears were visceral and profound and real, those fears had to be challenged. That’s why we still tried to get him out of the house to sensory-friendly places and activities. Sometimes he enjoyed them; sometimes he most decidedly did NOT.  The point was to push gently on his protective walls, to broaden his understanding of the world, to prepare him for dealing with the unexpected while at the same time opening him up to the endless possibilities and experiences that make life worth living.

Yes, my fears about the concert were real, but I had to challenge them. In reality, the things I was worried about were things that just happen, the everyday risks we take by simply stepping out the door every morning. I could prepare the best I could to mitigate those risks and minimize my anxieties, but staying home meant resigning myself to a hollow, unsatisfying existence. It meant missing out.

So I went to the concert. And with the first electrifying chords I felt the rush of excitement and adrenaline you only get from experiencing music LIVE and LOUD.  I was filled up, recharged.  I danced and sang. I got lost in the music and didn’t care what people thought of me.

After all, everyday life with its sameness and routine and beige banality is like chicken and white rice: It’s good and all, but once in a while it’s nice to have cake.

And I ate my cake like a shark that day.

That’s what I want for my son, as well.  To live a life of avoidance, of sameness for safety’s sake, is to nibble at life’s edges.  I want him to gobble up opportunities and experiences, to try things and enjoy things and, when he’s finished with that bite, demand more.

So I will keep pushing those boundaries of comfort, ever so gently, for my son and for me, in the name of cake and concerts and all of life’s yummy goodness.

Picture courtesy of Pixabay.

Picture courtesy of Pixabay.

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.

Identity – Missing the Bells and Whistles

Published April 25, 2016 by Jen Rosado from MyAlternateUniv

My husband and I both drive gray Honda Civics – one is fully loaded and the other is a strip-down model. Because I drive our son to school and therapy, my husband has graciously left me the car with all the amenities, taking the car with only the factory basics for his long commute to work every day.

On occasions when my car needs service, I have driven the strip-down car. And although there is stuff I can live without, I realize how much it really sucks when certain things are missing.

My husband’s car has an AM/FM radio, but no CD player…not even a cassette player. There is no “auto-lock”, so each door must be manually locked, with the driver’s side requiring you to hold up the handle while locking it. It is not equipped with AC, and the windows are the old fashioned, hand-crank variety. To add insult to injury, the hand-crank on the driver’s side sticks and requires two hands to wrestle the window open and closed as it screeches and groans loudly in protest.

The car’s interior has seen better days. The ceiling material has detached itself from the insulating foam and would hang so low as to obscure the view through the rear window if my husband hadn’t clipped it back up in several places. Likewise, the glue holding the upholstery fabric to both back doors lost its adhesive power years ago, and now the fabric hangs loosely, attached only in the upper corner where it is trapped under the plastic casing surrounding the door handles.

When I get the car up to speed on the highway, the engine roars and the steering column shudders. I half expect to look in my rearview mirror and see a trail of debris made up of bits of fuselage that has peeled itself off the exterior of the car. On warm days when the windows are down, material on the doors and ceiling balloon and flutter and snap in the wind, frayed and threadbare in some places like the sails of a ghost ship adrift on the high seas.

But for all it lacks and for all its flaws and oddities, it’s a good little car that gets us from point A to point B. Usually that’s all that matters.

Before my son was born, I remember dreaming of what it would be like to be a stay-at-home mom. Even if we could only afford for me to leave my career for a year or two, I was excited to throw myself into the role full-time. I would be the same person with all the same interests and hobbies and dreams – all those things that made me “ME”… and I would ALSO be a fabulously amazing mother.

It’s all about balance, you see. I had read that somewhere.

But my experience as a parent has not been about balance at all. It’s been about sacrifice.

From the moment my son was born, I’ve shed little bits of me. I’ve watched in my rearview mirror as those parts bounce and clatter and roll away behind me, retreating into the distance, memories of a person I once was. And with each new bump in our autism journey I shed more of me.

In my old universe, I was a teacher, a dancer, a runner, a reader. I traveled and climbed mountains and took photographs with a camera that required actual film. By no means was my life a “luxury car”, and I had no desire for a turbo-charged life in the fast lane. Mine was a practical, comfortable life with enough “bells and whistles” to keep things fun and interesting. Music playing and moon-roof open, I felt free to explore the world and discover my place in it – my interests, my passions, my identity.

I’ve spent some time mourning the loss of these pieces of my identity as if they were, indeed, lying by the side of the road somewhere, decomposing and forgotten like so much carelessly discarded litter. I’ll admit, I’ve felt sad and angry and resentful, even bitter about the loss of those pieces. I miss the “bells and whistles”.   I miss my freedom.

Sacrifice is often painted as noble and honorable, a necessary step on the path toward deeper meaning and personal growth. But sacrifice worthy of honor should be a gift given willingly with a full heart, not grudgingly with exaggerated sighs and muttered curses…right?

And so I’ve worried – Am I a selfish, horrible person?

I realize now that I am not a selfish, horrible person, because if I gave up or lost something and didn’t miss it, it wasn’t all that important to me in the first place. Missing it is what makes it a sacrifice. That struggle is where deeper meaning and growth is found, not in some blissful acceptance of things lost.

And when life circumstances force you to sacrifice things that are important to you, when you are stripped down to the factory basic model of yourself, it can make you reconsider the very idea of identity.

It’s true that I am no longer a professional teacher, and I have little time for pleasure reading. It’s true that my dreams of traveling and exploring the world may no longer be possible in my present circumstance. And it’s true that although I’m the same make and model, same year, I’m not in such great shape anymore. My best dancing and running days may be behind me, as some of my parts have taken to creaking and groaning, and now I wheeze and cough when I reach speeds at which I once cruised with ease.

But who I am at the core remains the same when I define myself not with nouns like teacher, dancer, and explorer, but with adjectives like passionate, curious, idealistic, and creative. These traits are the engine that moves me forward, the engine that has ALWAYS moved me forward.

No matter the condition of my exterior. No matter how tattered and threadbare my interior may become from the storms that whip through me. No matter the bits and pieces and parts that fall away. No matter my flaws and oddities, my engine still somehow gets me from Point A to Point B. It gives me the power to reimagine, redefine, reinvent myself.

There are many ways to be a teacher.

There are many ways to be an explorer.

There are many ways to dance.

I need to spend less time looking in the rearview mirror lamenting what is lost and focus instead on the road ahead. My engine is driving me in a different direction now, on a road less traveled – one with twists and bends and mountains to navigate and few road signs to guide the way. The uncertainty is both terrifying and exhilarating.

So now with my music playing and moon-roof open, with a full tank and my engine strong, it’s time to explore my new world and discover my place in it, and maybe, just maybe, “find myself”.

My unexpected detour might make all the difference.

Photo courtesy of Pixabay.

Photo courtesy of Pixabay.

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