anxiety

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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.

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.

Meltdown – Containment of Our Little Nuclear Reactor

Published April 8, 2015 by Jen Rosado from MyAlternateUniv

It was about 2:00 in the afternoon on a crisp, fall day. I was speeding the backcountry route to my son’s school…Well, I WOULD have been speeding, but I was behind several cars, the first of which was driving at least 10 miles per hour below the speed limit and likely making everyone else just as crazy as I was at that moment. Road rage issues aside, this particular day I had a reason to be in a hurry. I was headed to pick up my boy. His teacher had called to say he was having a meltdown, and they were having trouble calming him – I needed to come right away.

If you’ve heard of autism, you’ve probably also heard of “tantrums” that individuals on the spectrum may have sometimes. I don’t use the word “tantrum” – a tantrum in my mind’s eye is a child throwing himself on the floor, kicking and screaming and carrying on because he didn’t get his way, or a child stomping to her room and shrieking, “I HATE YOU!” before slamming the door. Those are tantrums, and pretty much every kid on the planet has had one of those.

I prefer to use the word “meltdown”. That is, of course, with the understanding that I’m not comparing my son’s emotional state to, say, an ice cream cone melting on a hot day, where the warming molecules begin moving faster, breaking the bonds between them so they slide past each other and become a liquid, gooey mess. No, it’s more like the meltdown of a nuclear power plant, where enriched uranium fuel rods are left uncovered and uncooled, melt into a hot, radioactive gooey mess, subsequently burning through the containment vessel, possibly leading to an explosion and release of hazardous radioactive fallout.

THAT is the meltdown I’m talking about.

And just like in the case of a nuclear reactor, it’s very difficult to reverse my son’s meltdowns and prevent the explosion. Once it’s reached a certain point, we pretty much focus on containment in hopes of minimizing the danger he poses to himself and others.

It hasn’t always been like this. My son was a lot less volatile when he was a toddler lost in his own world. As he grew older and more aware, his anxiety and agitation grew as well. Coming out of his shell exposed him to an overwhelming and frightening world. He was simply not equipped with the necessary tools to process and navigate through it.

Warning signs of future trouble were almost imperceptible at first. Around 4 years old, he started having emotional outbursts that were short-lived and could be easily traced to a trigger – hunger, tiredness, and frustration were common and pretty easy to identify. As the outbursts became more frequent and for a longer duration, the triggers became harder to pinpoint. He might be playing quietly in the yard, then suddenly take off running, screaming and crying as he ran. If we tried to calm him, his anxiety would escalate as he tried to break free.

In the months that followed his agitation increased, especially when he returned to school in the fall just after his 5th birthday. It became harder and harder to calm him and nearly impossible to prevent his meltdowns, since there often seemed to be no antecedent for his emotional state. That doesn’t mean that there WASN’T a cause, only that we couldn’t readily identify it at the moment of his outburst. It could have been anything: an upset stomach, a headache, sensory overload, disliking a task, an upsetting memory, stars out of alignment…you name it. He had no way to tell us what was wrong.

What’s more, he was becoming more aggressive towards me. Sometimes he would seek me out for comfort but then pinch, scratch, and bite me, pulling my hair with both hands, desperately trying to communicate his pain and anxiety.

The International Atomic Energy Agency has a scale for rating nuclear incidents based on the level of danger, from a Level 1 “Anomaly” to a Level 7 “Major Accident”. One day in October, I knew we had moved up our own meltdown scale into a much more dangerous category. I got my son off the bus that day, and we walked slowly up the driveway, his arms wrapped around my arm, his head leaning against me. A whining noise began to build in his throat as we went in through the front door. At the top of the stairs, the whine became a scream. He began jumping up and down, hitting himself on his head with his fists, pulling his hair. I tried to soothe him, but he broke away and ran into the living room where he threw himself down, banging his head repeatedly against the carpeted floor.

These are considered “Self-Injurious Behaviors”. It was time for professional help.

I took him to a psychiatrist who specializes in children with autism. She started him on a small dose of Clonidine, which did not react well with his system. We took him off this medication for several days before beginning a different medication.

It was during this lull in medication that my son had the terrible meltdown at school, where I was headed that afternoon.

The seriousness of the situation that day was punctuated by the fact that both the school nurse and the principal greeted me at the school door. After assuring me that my son was calm and safe with his teacher, I was ushered into the nurse’s office where they explained what had happened: Suddenly and unexpectedly, my son had jumped up from his activity and started screaming and throwing himself into filing cabinets, against walls, and onto the floor, apparently with the intent to hurt himself. My five year old, my baby, was so out of control that he had to be restrained by two, and at one point three, adults for his own safety. The meltdown stopped only after he was completely exhausted.

As I attempted to seek mental health help for my autistic child from the school nurse’s office, an image began to form in my mind of a room full of medical and related service professionals loudly declaring, “NOT IT!” The pediatrician’s office said to call the psychiatrist. The psychiatrist wasn’t in, and I got the voicemail of her nurse. The children’s hospital said I could certainly bring my son in to be checked, but they weren’t sure how much they really could do to help him.

The emergency room seemed the best option, so I loaded my now calm and happy boy into his car seat and headed for the children’s hospital, stopping on the way to pick up my husband. We were almost to the ER when the nurse at the psychiatrist’s office called back. “Don’t bother going to the emergency room,” she said. “If he’s not ‘in crisis’ when you bring him in, there really isn’t anything they can do for him. I’ll fit you into the doctor’s schedule early next week. In the meantime, try calling the mental health crisis hotline at 211.”

The therapist at 211 was very friendly, but it became clear that the methods she used to counsel youth in crisis would not be helpful for a non-verbal five year old with autism. She offered to come out to our house anyway, so we decided against the ER visit, turned around, and headed home. A half hour later, she called back to say she had an emergency crisis and couldn’t make it until the next morning. I thanked her and declined, knowing it really wouldn’t do much good.

So there we were, my husband, my boy, and I, in the haze of radioactive fallout from a terrible meltdown. It left us shaken, confused, and isolated. We still knew something was wrong with our son but had no idea what it was or how to fix it. It’s like the warning alarms in our power plant were sounding, red lights flashing, while we sat staring at the computer screens, attempting to make sense of the pressure and temperature data, desperately trying to find a way to cool our little nuclear reactor core and restore balance and peace. With no nuclear engineers rushing to our rescue, we felt completely helpless.

Early the following week, the psychiatrist started our son on Risperdal. To our relief, we noticed a positive change within a day or two. The medication was like a cooling solution for our boy’s over-reactive, over-heating system. He became calmer and more ready to learn. His meltdowns were less frequent, less severe. His smile returned.

Medication is not the quick fix it appears to be, however. We constantly weigh the benefits with the risk of possible side effects. Like the cooling system of a nuclear reactor, it requires monitoring and adjusting. And medication, while avoiding some meltdowns and helping reduce the severity of others, does not address the underlying causes. The communication, social/emotional, and anxiety issues that my son has are still there, bubbling below the surface… “contained”, for the moment.

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Noise – Why It’s a Good Thing I Can’t Shoot Laser Beams From My Eyeballs

Published March 8, 2015 by Jen Rosado from MyAlternateUniv

I hate going to the movies.

Actually, I hate going anywhere that requires people to sit quietly for an extended period of time and just watch or listen.

The reason I do not generally enjoy these things is not because I cannot sit still and be quiet, it’s because I cannot tune out the OTHER people who cannot sit still and be quiet.

And I may sound a little paranoid, but I’m pretty sure fate likes to mess with me when I go to the movies. No matter how empty the theater is, undoubtedly the “distractors” will find me: The parents with several small, antsy children, the teenagers who are just looking for a place to hang out and goof off, the couple that wants to analyze and discuss the plot of the movie, the guy chomping on popcorn, slurping his soda, and shaking the cup to dislodge the ice in the hopes of finding more soda near the bottom.

They FIND me.

They find me at the symphony. Just when the orchestra reaches a particularly moving part of a Mozart Concerto, the little old lady behind me tries to open a cough drop wrapper…very…very….slowly. Crinkle! (Pause) Crinkle! Crinkle! Crinkle! (Pause) Crinkle! This is followed by the “mouth noises” of the cough drop clicking against her teeth as her tongue moves the lozenge from one area of her mouth to another. I cannot focus on or enjoy the music until the noises stop. Mercifully, the noises DO stop, only to be followed by her loudly whispering to her friend, “Do you know where the ladies’ room is?”

AAAAARRRRGGGGHHHH!!!!!

Sometimes I hear sounds nobody else even notices. The “thump, thump, thump” of the music from a party down the street plays on my every nerve until I literally feel my chest tightening and my heart beating faster, like the start of a panic attack. A person chewing and swallowing in the same quiet room makes me feel physically sick. Don’t even get me started on gum-chewing.

So, yes, you may have figured out that I have very sensitive hearing, which seems to be wired directly into my nervous system. I’ve been cursed with an almost complete inability to filter out extraneous noises that disrupt an otherwise quiet environment or interrupt a situation that requires my focus and attention. The distracting sounds start as a small irritation, but as they continue they fill me with anxiety. The anxiety builds to a point where I am forced to escape or make the sound stop. When it reaches this point, it’s a very good thing I do not possess the ability to shoot laser beams from my eyeballs. (Yes, consider yourself lucky, college student who was the test monitor who administered my teacher certification exams and sat at the front of the classroom sipping Diet Coke, eating a bag of crispy potato chips, and whispering and giggling about your weekend to your friend who stopped by, while I tried to focus on an exam that cost hundreds of dollars to register for and would determine my ability to secure a job in my chosen career and collect a decent paycheck. You are VERY LUCKY. Just sayin’.)

At times I’ve wondered, what is wrong with me? Why am I so darn sensitive? Why can’t I just learn to tune things out like other people? As I have read up on the brain in an attempt to understand my son’s autism better, it has actually been a bit of a relief to learn that some people are just “wired differently”, both for learning and for sensing.

Throughout day-to-day life, we take for granted that everyone’s senses are registering and understanding the world in pretty much the same way. Roses smell like roses. Strawberries taste like strawberries. Mozart Concertos sound like Mozart Concertos (sans cough drops, one hopes).

So it’s true that humans have a relatively common basis of sensory experiences. It appears, however, that my son actually senses things differently. In addition to autism, my son has what is known as SPD, or Sensory Processing Disorder*. A simple way to explain SPD is that although my son’s sight and hearing have been tested to be completely normal and his motor skills and movement are developmentally appropriate for his age, his brain does not process the signals he receives from his senses the same as other children.

Individuals on the autism spectrum often have difficulty filtering and utilizing the information coming in through their senses. And it’s not just the five senses we’re familiar with – vision, hearing, smell, taste, and touch. SPD also can affect movement, balance, and body position (vestibular and proprioceptive senses). A person can be over-sensitive or under-sensitive, over-responsive or under-responsive. They might seek a sensory experience or avoid it.

Through observation of his behavior, it appears that my son is more visually sensitive – he seeks lines and patterns, and he loves lights and lightbulbs. He seeks out vestibular and proprioceptive input through spinning, jumping, and crashing, yet he tends to avoid some kinds of swinging. His feeding issues stem from an avoidance of certain textures and tastes of food. But, by far, his most distressing over-sensitivity is his hearing.

Some causes of his auditory distress are pretty obvious: Toys that move and make noises frightened him. A clock striking the hour or a toilet flushing might send him running from a room. He might become inconsolable if a rooster crows on TV. He has a physical aversion to places where sounds are loud and confusing, like the grocery store and the gymnasium at school. He refuses to go outside to play if a neighbor down the street is using a leaf-blower. Even the sound of my voice sometimes causes him to howl and clap both hands over his ears.

But some causes of his auditory distress are more of a mystery, like during a ride home on the highway not long ago. As I merged into traffic and brought the car up to speed, my son suddenly started shrieking and kicking his feet, his hands covering his ears. I searched for reasons for his behavior: the radio was off, no one was talking, the windows were up. Still this continued until, hoping to find a way to calm him, I slowed down to take the next exit. As the car slowed, my boy took his hands from his ears and his crying quieted. When I sped up to the speed limit on the back road, he became agitated again. I realized it was the sound of the car engine – my son was bothered when it revved at certain speeds. So I kept the car at a steady, slower speed on the back roads. (It was my own version of the movie, “Speed”, only my movie would be called, “Deceleration”, starring me as Sandra Bullock’s Annie, my husband as Keanu Reeves’s Jack, with Dennis Hopper on the cell phone warning us there was a preschooler in the backseat set to explode into a full meltdown if the car went above 50mph. Yes, at times my husband and I have all the suspense and drama of an action/adventure movie. Although taking the slow, scenic back roads through the countryside to get home would not for make a very exciting plot twist, I suppose.)

We all have those things that make us crazy – certain smells might give you a headache, a particular sound might send chills up your spine, the motion as you ride in a car might make you carsick. We learn ways to cope by either addressing the problem or avoiding it.

This got me thinking about my own issues with tuning out noises. The discomfort I experience with my auditory sensitivity, milder than my son’s I’m sure, gives me an idea of how overwhelming and even painful the world must be at times for him. What’s more, my son does not possess the skills that I have to cope with the noises that bother him. He does not have the communication to express how he feels or to ask someone to stop. Nor has he learned the not-so-subtle ability to clear his throat loudly and shoot a stink-eye at someone (passive-aggressive, yes, but less violent than laser beams).

My heightened sense of hearing, at times a curse, provides a glimpse into the reasons for my son’s anxiety and agitation stemming from his SPD. The blessing is my ability to understand his discomfort. It’s an awareness that allows me to identify a source of distress and provide him the tools to cope (like wearing headphones in the gym) or help him avoid the issue in the future (like enjoying a museum only on “sensory friendly” days to avoid noisy crowds).

It’s a connection we share, my boy and I.

Not long ago, we found ourselves in a building that must have had thin walls, because I kept hearing an irritating noise coming from the floor above. I just couldn’t ignore it no matter how hard I tried. Looking at my son with his hands firmly placed over his ears, I smiled. “I know, Buddy. That IS really annoying!”

Yup, when it comes to noises, my boy totally gets me.

* Please note: I’m a mom, not an expert in SPD, senses, the brain, etc. Consult an Occupational Therapist if you have questions about SPD, or check out one of my favorite books on SPD, “The Out-of-Sync Child”, by Carol Stock Kranowitz.

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Control – Basic Physics and The Average Bear

Published February 1, 2015 by Jen Rosado from MyAlternateUniv

There are many different bears in this world: Winnie the Pooh is stuffed with fluff yet philosophical and, in my opinion, unfairly labeled as a “bear with very little brain”. And Yogi Bear – thought to be smarter than the average bear based mostly on his ability to steal picnic baskets from park visitors. Of course, there’s Fozzie Bear with an indomitable comic spirit despite constant heckling from the balcony. Also the easygoing, practical bear, Baloo, from The Jungle Book, looking for the bare necessities of life. And don’t forget Smokey the Bear, passionate activist and educator who is always on the look out for danger.

But this is not a blog post about bears – it’s a blog post about physics. More to the point, it’s a blog post about physics and bears and the way fate and the Cosmos conspired to wrest control from my stubborn, desperate, clenching fists, because I sure as hell was not giving it up without a fight.

But first…physics and bears:

Back in my previous universe, I was a fifth grade teacher in an elementary school. Part of our science curriculum was basic physics, including Newton’s first law of motion, also known as “The Law of Inertia”: An object at rest tends to stay at rest, and an object in motion tends to stay in motion, unless acted upon by an outside force.

I wrote this on the white board in the front of the classroom while my students dutifully copied it into their science notebooks.

Any grumblings there may have been when I asked them to copy down their homework at the end of class quickly turned to smiles and even some cheers. Their homework was to bring in a large toy car or remote controlled vehicle and a stuffed bear for the lesson the next day. The toys would be used during science class to conduct an experiment. They would work in pairs or groups, place the stuffed bear atop their vehicle, push the car with a quick motion to start, and end by crashing the car into another car or a wall. Sounds violent, I know, but keep in mind that these are kids, and it’s very likely they had done this many times before in play. The only difference was now I was asking them to make observations about the motion of the bear.

My students laughed and chatted the next day as they pulled cars and bears from their backpacks. They split into groups and found spots in the classroom to drive their stuffed bear around, colliding into walls, radiators, desks, and other cars. The room filled with “Vroom! Vroom!” driving sounds and high-pitched “EEERRRT!” sounds for brakes, followed by loud crashing sounds. (Really, how could you do this activity and NOT add sound effects?) They noticed that when they first started pushing the car, the bear fell backward. When the car came to a sudden halt after slamming into something, the bear flew forward. A bear at rest remained at rest even though the car began moving. A bear in motion continued moving forward at the same speed, even though the car had stopped.

But what about the ‘unless acted upon by an outside force’ part of Newton’s Law?

The din subsided into problem-solving discussions when I gave them their final task: Use materials found in the classroom to design a support or safety system to protect their bear from the effects of inertia.

Thinking back now to that classroom and those students really is like stepping back into a whole different universe…one in which I was a bear completely in control of her car.

Sitting on the roof? No way! I was behind the wheel of my vehicle, swerving to avoid chair legs, bookcases, radiators, and the other insane stuffed bears that were riding on top of their cars. I could see that wall coming from a mile away and have enough time to not only avoid colliding with it, but also plan out an alternate path to avoid it, a “Plan B”, if you will.

Yes, I felt fully in control of my life back then and not because I had great confidence and bravado. It was actually the opposite. I had a desperate need for control in order to ease my constant anxiety. I felt safe in my world as long as I was the one who was driving.

Somehow I was plucked from the driver’s seat and placed on the roof the moment my child entered this world. My car unexpectedly veered off the planned course onto an alternate path to my Universe “Plan B”, and I am currently a stuffed bear hanging on for dear life to the top of a speeding vehicle that is fully in control of a highly energetic, complex little boy with autism.

There are times on this crazy ride when I feel I’m coming apart at the seams, my stuffing beginning to show. And I’ll admit that my own personality is partly to blame.

Since my son was born I have felt compelled to respond to his every need. I choose the word “compelled” quite purposefully here, because indeed I felt instinctively driven to respond to my son’s cries. It was more than just a sense of maternal responsibility – I actually felt physical symptoms of anxiety when my infant son was crying. Even when others around me offered to help, I just couldn’t give up that control. It was not that I didn’t trust others to comfort him. As strange as this may seem to someone who has not had anxiety, to NOT respond felt almost unbearable.

But this was no ordinary baby. He was a discontented, colicky, “high maintenance” baby, and his needs only became more complicated as he grew older.

What’s more, I felt weird about letting people clean my house and help with chores when they offered. It was my family’s mess, after all. Besides, my Type A personality was convinced they wouldn’t clean it the way I would clean it anyway – stuff would get put away in the wrong places, towels would be folded differently, and I’d probably just end up all out-of-sorts instead of relaxed.

So what does all this have to do with bears and physics and a grand conspiracy of fate and the Cosmos?

Well, if you happened to be the kind of person who feels compelled to do everything yourself and you were to, let’s say, have a child who lacks the ability to communicate and requires help for everything from eating and dressing, to regulating emotions, to occupying what seems like every waking moment, all in addition to your normal tasks like cooking, cleaning, and shopping, it may take hitting a wall before you realize…you can’t do it all.

That wall for me was the Epstein-Barr virus, the cause of mononucleosis (just one of the many delightful illnesses carried home by our little host monkey from his preschool). This illness made me dizzy, short of breath, and more exhausted than I have ever felt in my whole life. I kid you not – I was at times so tired I had difficulty responding to someone talking to me, like it took too much energy to get my thoughts to combine with the air in my lungs and the vibration of my vocal chords to actually speak words. Nope…Sorry…Too tired.

I had to let go of some of my control. I had to accept the help of others. I needed to recognize my limitations and say no to those things I couldn’t handle…just focus on the bare necessities.

The experience made me realize the importance of a support system – the “safety belt” that will keep me from flying into the next wall that appears in my path. It’s a support system for me AND my husband (who is also a bear atop his own speeding, swerving car.) That support came first and foremost from our parents, who babysat, cooked meals, picked up groceries, chopped wood, and mowed the lawn. Next were siblings and family members who repaired our cars, hosted holiday gatherings, and provided emotional support.

But having a child with complex special needs requires our support system to extend beyond family. As our parents have gotten older and our son’s issues have become more complicated, we’ve looked into community resources for respite, requested grants to pay for therapy in the home to teach our son self-help and communication skills, and attended workshops and meetings to connect with other parents, always on the lookout for materials and information to construct a more secure support system.

So now I guess you could say I’m a practical, passionate, philosophical bear learning to rely a little more on my safety belt while the inertia of life speeds me forward. Maybe with time (and a good sense of humor) I can learn to relax…just a little bit…and enjoy the ride.

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Anger – Why I May Be Destined For An Oscar, Not Sainthood

Published December 5, 2014 by Jen Rosado from MyAlternateUniv

“You are so good with him.” The secretary smiled, her chin resting in her hand as she watched me interact with my autistic son. I have often received compliments like this. Compliments about how patient I am, how I’m such a loving mom, how God chose me to be my son’s mom for a reason.

I responded the way I always do, with a wry smile. “Oh, thank you. But you should see me at 3AM.”

Of course I say this jokingly, but it really is no joke.

Although I am flattered by the compliment, I am no saintly Mother Theresa. That is, unless Mother Theresa had a potty mouth and anger management issues.

The truth is given the right circumstance – like searching for a missing sock or matching Tupperware lid, getting stuck behind a person who is driving too slow, trying to figure out the new operating system on the ipad, etc. – I can construct a string of profanity with more creativity and passion than my late-teens/early-twenties, heavy metal headbangin’, fish net tights with Doc Martin boots wearing self could ever dream. Because as angst-filled as I once was, it’s nothing compared to having control of your life completely hijacked by a preschooler, especially one with special needs.

According to my pre-parenting plans, my child was destined to be a “magic baby” who slept through the night the first week home from the hospital (as long as I put him into his bassinet before he fell asleep and let him “cry it out” so he could learn to “self-soothe”). Then my fantastic parenting would mold him into a “magic toddler” who would eat the food I put in front of him (or go hungry because I wasn’t cooking him his own meal). I was also quite sure that my child would be calm, polite, and well behaved – his preschool teacher’s dream (because I would set boundaries and be firm and consistent in my discipline approach at all times).

My careful, confident planning was based on many assumptions about my future child. I had not considered the possibility that my child would have a neurodevelopmental disorder that would affect his ability to calm his body for sleep. Or that he might have a Sensory Processing Disorder that would give him overwhelming anxiety and make it difficult for him to eat a variety of foods beyond the few he felt safe eating. And my plans didn’t take into account how difficult it is to teach proper behavior to a child with no receptive or expressive language. Indeed, I had never considered the fact there may be a very good reason why a child is not “calm, polite, and well behaved”.

A very, very good reason.

A reason beyond my control that required patient understanding, not strict discipline.

Now I’ll admit, patience has never been my strong suit. Sometimes I surprise myself at how patient I really can be as a parent. But while my love for my son is boundless, there is only a finite amount of patience in my being, an amount that diminishes exponentially based on one variable: Number of Hours of Unbroken Sleep.

Let me tell you a little something about sleep (or lack-thereof). It’s not for nothing that sleep deprivation is considered a form of torture. Sleep deprivation is not only the foremost cause of my lack of patience but also the biggest contributing factor to my possible future Oscar bid in the “Drama” category. Aside from the swearing, foot stomping, and door-slamming, one of my signature Oscar submissions would be my “exasperation moment” where I shake my fist skyward, cursing fate for her cruelty, shouting, “WHY?! Why can’t one goddam thing be EASY?!”

And it really seems that way at times. Whether it’s sleeping issues, feeding issues, asthma, allergies, anxiety, or the inability to communicate, it’s always SOMETHING. Or, as my husband says, “It’s always MANY things.”

In my writing, I try to deflect negativity with humor and hopefulness. But I worry that this may be a little disingenuous, like I’m being dishonest by the sin of omission. Because my anger, in all its ugliness, is very real – it’s the darker side of my experience as a parent.

It’s hard for me to look at this unpleasant aspect of my character. I’m aware of it. I want to change it. I see the way anger makes me selfish, less compassionate, less understanding. Like when I shout, “For the love of God, STOP COUGHING!” to my son in the next room as he wakes me up for the third time that night, for the fourth night in a row with incessant asthmatic coughing. “I gave you both inhalers and your allergy medicine! There’s nothing more I can give you!!”

That’s a pretty stupid thing to say. He has asthma and would very much like to stop coughing. It’s desperation, exhaustion, and selfishness that cause my brain to abandon logic at 3AM – I just want uninterrupted sleep, I want peace and quiet, I want things to be EASY for a little while. At 3AM, I really do feel I have nothing left to give. I’m all tapped out.

And it’s not just the foggy hours before sunrise that push me to the edge. Day to day, I find the pull of gravity to be so much stronger in this universe. Everything weighs heavier on me here. It’s overwhelming and crushing at times. But in this universe, humor provides “lightness”. So does hopefulness. And of course there are always lessons to be learned.

Years of broken sleep left my husband and I feeling like we had been pulled past some Event Horizon of Sleeplessness and were now spiraling into a Black Hole of Madness. So we decided to focus on the root of the problem – our boy’s sleep disorder. We bought a special air cleaner, humidifier, vacuum, and vent filters to help with his asthma and allergies. We got him a weighted blanket and foam mattress pad to help with his sensory issues. A projecting music player gave him something to turn on and watch when he awoke in the middle of the night. And when all else failed, his doctor prescribed medicine that treated his anxiety, impulsivity, and sleep disorder.

You know what? All of these things did not make his sleep issues go away entirely, but they did make the problem more manageable and improved the quality of sleep (and life) for everyone involved.

But what about my anger and guilt? Well, I wish I could say I found some fantastic technique that helped me conquer my frustration and impatience and brought peace and serenity to my life, but that’s not the case. Honestly, the more I’ve read blogs and articles about parenting and the more I’ve talked and commiserated with friends, the more I realized that I’m not alone in my guilt about not being a perfect parent. Special needs or not, parenting in not an easy job for anyone.

So if pretty much every average, typical parent struggles with impatience and frustration, why did I think that my son having special needs would preclude me from having those same feelings?

I realized I had internalized the belief that my son, with all of his special needs and challenges, had been “given to” my husband and me based on some superhuman abilities that made us more equipped for the challenge than the average parent. It was this idea that was shaping my unrealistic parenting expectations.

The reality is I do not possess any superpowers or abilities beyond the average parent. I was not built better, stronger, or faster, like some “6 Million Dollar Bionic Mom”, nor do I possess “Uncanny”, “Amazing”, or “Extraordinary” mutant parenting superpowers like some comic book hero.

I’m just an ordinary mom doing the very best I can to raise an extraordinary child – an uncanny, amazing, and exhausting little boy, who we may find in the future does indeed possess some superpowers of his own.

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Empathy – The Birth of a Blogger

Published July 24, 2014 by Jen Rosado from MyAlternateUniv

When I arrived in my alternate universe, my first thought was not to start writing a blog. Early on in my adventures, all my thoughts and energy went into SURVIVAL. Yes, I know this sounds a bit exaggerated and overly dramatic, but it’s true.

I think every parent of a child with special needs has read the beautiful essay by Emily Perl Kingsley called, “Welcome to Holland”. I get all teary-eyed when I read it, and I’ve shared it several times on Facebook over the years. In the essay, Emily describes her experience of finding out her child has a disability by comparing becoming a parent to a trip to Italy. You’re excited and prepared for Italy, read the guidebooks, learned some Italian phrases, and planned out which sites to visit. As the plane comes in for a landing, the stewardess announces that you’ve arrived…in Holland. Her description of the shock, the confusion, the disappointment, and finally the acceptance – that’s pretty much what it feels like.

But I’ve always imagined that our plane did not land in Italy or Holland. After all, Holland is peaceful and serene, with tulips and windmills – a nice, relaxing, slow-paced destination. I’m guessing that our pilot came over the intercom with an irritatingly jovial voice to announce, “Well folks, we know you love mystery and adventure! So we’re letting you jump out of the plane and parachute into this jungle here! Heh! Heh! It’s pretty crazy at night, so we recommend sleeping in shifts or not sleeping at all. Your mission is to find some friendly natives who live in the jungle. The quicker you find them the better off you’ll be in the long run, so pay attention! They will direct you to the nearest civilization – a busy and confusing city, crowded with honking cars and people who don’t speak your language. THAT is where you’ll find the next clues in your adventure. Aaaaaannnnd if you’re lucky, you might eventually find your way to HOLLAND!”

Ah, yes. That’s more like it. Now you see why I was focused on survival and self-preservation for those first few years. Our lives had become “Survivor”, “The Amazing Race”, and “Nanny 911”, all rolled into one.

After four and a half years in this place, the inspiration to write a blog hit me. WHY I wanted to write about my experiences is pretty selfish, really. I was looking for empathy. I wanted people to understand. I wanted to feel less alone.

Because this universe is terribly lonely at times. The nature of autism is a “separate-ness”, an “alone-ness”, not just for the child but also the parents. It doesn’t happen right away necessarily – it’s a distance that grows over time. Even after making new friends in the special-needs community, I still felt isolated. I missed my old friends, my old life. I found myself becoming ever more envious of the friends who ended up in “Italy”.

It was nobody’s fault really. My friends and I still tried to get-together and hang out. But I felt weird right after my son’s diagnosis – like an exposed nerve, electricity buzzing all around my head. I’m surprised people couldn’t hear all those excited electrons zipping and banging into each other, because all that racket was making it very difficult for me to put coherent thoughts together. And my anxiety was such that my head felt detached, as though it was floating a little above my body like a helium balloon.

Electrically charged particles, floating head, thoughts lost in a static haze…hmmm… sounds a little dangerous. Indeed, I should have had some kind of warning sign on me, mainly for my newly acquired case of “blurting”. I often found myself interrupting a pleasant conversation with friends to blurt out, “My son has autism…”. Of course, my poor friends would have no idea what to say or even what look to put on their face.

Later I’d be driving home, thoughts bouncing around in my electrified balloon head: Why weren’t my friends making me feel better? Didn’t they understand? Didn’t they know how difficult and painful this was for me?

The truth is, no, they didn’t understand. They COULDN’T understand, not really, unless they had been through it themselves.

This was my first “empathy epiphany”. I realized that when you empathize with someone, you try to put yourself in his/her shoes and understand their feelings from their perspective. This is a little more difficult to do when that person is going through something that you have absolutely no personal experience with. You end up pulling things from your memory that are closest to what they are going through, hoping those words of advice or reassurance will provide some comfort. I know, because I’ve done this before myself, when I really care about that person and their struggles, and I’m desperately trying to find a way to make them feel better.

But that’s not always easy…or even possible.

This was my second epiphany: It was not the job of my friends to make me feel better about my son’s autism. Because really, there was nothing anyone could say at that point to make me feel better. It was an unfair expectation.

So how does all this stuff about empathy lead to my decision to write a blog?

Well, the idea to write a blog came from my last “empathy epiphany.” It started with a fundraiser:

A month or two after the diagnosis, my sister-in-law called to tell me about a fundraising walk for an autism charity. “We should form a team!” she suggested. It sounded fun, so I agreed. It was only two weeks until the walk, but we managed to register our small team and raise $400. The event was such a wonderful, positive experience. Everyone there was celebrating someone with autism, just like us. With all the stress and anxiety that is autism, this was like a deep cleansing breath, and the positive energy grounded me. The buzzing electricity began to fade, and my head slowly returned to my shoulders.

Posting our team photo on Facebook was kind of like our autism “Big Reveal” to anyone who didn’t know about it yet. Empowered, I shared pictures and articles related to autism and posted occasional updates about my son’s progress in the months and years that followed. Autism wasn’t a secret to be hidden or discussed in hushed voices, nor was it something shocking that I needed to blurt out at dinner parties. It was simply a matter of fact: Our son had autism, and it was part of our reality now.

With this approach, friends wanted to know more about my son and his progress. They asked questions and took an interest in learning about autism. Some asked to join our team for future walks. It was as if people no longer had to worry about looking for the right words or the correct expression to put on their face when I talked about my son’s autism. Being open and honest, I felt more connected to people, sharing my experiences without placing unfair expectations on them to comfort me.

And here’s the strange thing – although there was no expectation of comfort, I WAS comforted. My comfort was the feeling that I was no longer ALONE in autism.

That was my final “empathy epiphany”, the reason I chose to start writing this blog. My friends didn’t have to understand everything that I was experiencing in order to give me love and support. They did that by just sharing in the journey.

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