anxiety

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Adaptability – The Half-Baked Wisdom of a Fortune Cookie

Published September 14, 2018 by Jen Rosado from MyAlternateUniv

Let me start by saying I don’t believe every fortune cookie needs to have something wise to say. In fact, I’m guessing the cookies from which I received fortunes that I’ve since kept pinned to my bulletin board are likely the overachieving cookies that actually put some effort into coming up with a thoughtful bit of wisdom or wit to impart before fulfilling their sweet and crunchy destinies.

One quote tacked to my board is, “It takes courage to lead a life. Any life.” Well, Amen to that. Clearly that cookie had seen a thing or two and was familiar with struggle, and so its fortune earned a spot in my collection.

Another is, “Go for the gold today! You’ll be the champion of whatever.” Admittedly, this one sounds like a determined and well-meaning cookie that couldn’t quite complete the thought at the end. “Go for the gold today, and umm…you’ll be the champion of…whatever!” That’s how I read it in my mind, and I laughed and admired its enthusiasm and added the quote to the board.

One particularly deep fortune cookie said, “Life is a comedy for those who think and a tragedy for those who feel.” But it turns out, that quote has been attributed to several thinkers from Jean de La Bruyere, to Jean Racine, to Horace Walpole, so that cookie was a bit of a poser and possibly a plagiarizer for not citing its source properly. Nonetheless, the quote became part of my collection.

There are countless fortune cookie quotes I’ve thrown away over the years because they didn’t contain anything interesting or noteworthy enough to justify keeping. But I never read a fortune that I’ve openly scoffed at until yesterday.

“Depend on the predictability and steadiness of life to support you.”

Oh, boy. This cookie must have led a sheltered life.

In fairness, being a fortune cookie spending most of its life surrounded by other cookies that look exactly like itself, protected from the crushing pressures of life in partially inflated shrink wrap packaging, and knowing with relatively high certainty just how it would meet its end – it can’t really be blamed for mistakenly believing that life is predictable and steady.

For people like me who have anxiety and people like my son who have autism – we seek predictability and steadiness in life precisely because life is not predictable and steady. Life is ever changing, and that scares the crap out of us because we’re not sure what to expect or how to prepare. Our routines and schedules and rules serve to calm our fears and create stability in the seeming chaos and uncertainty of everyday life.

It takes courage to lead a life. Any life. If life were predictable and steady, it wouldn’t take so much courage to get up each day, go for the gold, and maybe be the champion of…whatever.

What’s particularly interesting about the quote regarding life being a tragedy or a comedy is the fact that Horace Walpole’s version of this quote went as such: “I have often said, and oftener think, that this world is a comedy to those that think, a tragedy to those that feel – a solution of why Democritus laughed and Heraclitus wept.”[i]

Yeah, I’d never heard of them before either. But what is the Internet for if not to look up the names of ancient philosophers while in search of the origin of an un-cited quote found in a fortune cookie?

Turns out, Democritus was known as “the laughing philosopher”. He was a brilliant thinker with a cheerful disposition who came up with the atomic theory that everything in the universe is made up of atoms and empty space.[ii] Heraclitus, on the other hand, was known as “the Dark One”.[iii] He surmised that change is central to the nature of the Universe but there was also a “Logos” or logic to that change.[iv]

It’s not surprising to me that the philosopher who said things like, “Everything flows, nothing stays,” and “Nothing endures but change,” was seen as moody and pessimistic. But Heraclitus knew what my misguided fortune cookie failed to recognize – life is always in flux. “You cannot step twice in the same river.”[v]

But it’s good to remember that not all change is bad. And whether it’s in a scientific, philosophical, psychological, or spiritual sense, there does often seem to be “logic” behind the change.

Yet even when change is good and necessary, there’s still that fear of the unknown. It takes courage to accept change and cope with the anxiety, but my son and I are finding there is comfort in adaptability.

For example, my son carries his blanket, a “transition object”, to school with him everyday, sometimes wearing it over his head on difficult days. The blanket is predictable and steady. It reminds him of the safety of home. It helps him adapt by providing comfort and support when the environment, people, and expectations are changing around him.

And when I find myself saying, “This is unfamiliar, I’m worried what might happen next, and I wish I had a blanket to put over my head,” I’ve learned to give myself time to ease into the change, mentally and emotionally, and build familiarity with the new situation or competency with the new skill until the fear is replaced with confidence…or at least a sense that it’s not the end of the world and I will, indeed, survive.

When it’s all said and done, I can’t disparage my misguided fortune cookie for its half-baked wisdom. First of all, it seems like a jerk move to criticize a cookie after I’ve eaten it. Second, it provided the inspiration for my first blog post in 9 months, thereby ending a long and frustrating bout of writer’s block. Lastly and most importantly, that cookie clearly saw the value in steadiness and predictability, just like my boy and me.

So I baked its bit of wisdom a little longer until it was completely done, and now I’m adding it to my bulletin board: “Depend on the predictability and steadiness of life to support you, but find comfort in adapting to change.”

Fortune Cookie image courtesy of Pixabay

 

[i] Wikiquote contributors, “Horace Walpole,” Wikiquote, , https://en.wikiquote.org/w/index.php?title=Horace_Walpole&oldid=2284773 (accessed September 14, 2018).

 

[ii] Wikiquote contributors, “Democritus,” Wikiquote, , https://en.wikiquote.org/w/index.php?title=Democritus&oldid=2451430 (accessed September 14, 2018).

 

[iii] Palmer, Donald. Looking At Philosophy: The Unbearable Heaviness of Philosophy Made Lighter. 2nd ed. Mountain View, CA: Mayfield Publishing Company, 1994.

 

[iv] Wikiquote contributors, “Heraclitus,” Wikiquote, , https://en.wikiquote.org/w/index.php?title=Heraclitus&oldid=2379976 (accessed September 14, 2018).

 

[v] Ibid.

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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.

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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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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Birth – Alternate Universe via C-Section

Published March 5, 2014 by Jen Rosado from MyAlternateUniv

As I stated in my first post, I’m pretty sure this universe where we are right now is actually a parallel universe to the one I once inhabited.  I don’t know much about Quantum Physics, String Theory, or Hugh Everett’s “Many-Worlds” Theory, but I’ve read enough to know that this is a totally plausible explanation for where I find myself today.  What’s more, the “old me”, my alter ego back in my original universe, is right now, I’m sure, enjoying all the benefits of my hard work and careful planning.

When did my reality shift to this new universe, you ask?  Well, my adventure begins with a birth.  Not MY birth…the birth of my son.

Now, I know what you’re thinking.  You think I’m going to write about how, after months of anticipation and many hours of intense, painful labor, my newborn boy was placed upon me (skin-to-skin, of course, for proper bonding), and we gazed in each other’s eyes, and the heavens opened with the sound of trumpets, and we heard a chorus of angels and the sighs of thousands of small, woodland creatures, and my husband and I locked tear-filled eyes, and that moment…that was when my universe changed forever.

You’re thinking of my alter ego’s blog.  Perfectly understandable.

Because, you see, that is EXACTLY how I pictured it would be.  I can’t really be blamed for this image because all you have to do is read a few pregnancy books and talk to a few people and this is the story you are told.  Time and time again I heard, “Oh, it hurts like hell!  But as soon as you see that baby, you feel no pain.  You just fall in love and nothing else matters in the world.”

My hormone-addled, anxiety-ridden brain just ate this stuff up.  But somehow the logic side of my brain got a message through the haze and told me to prepare.  I attended birth classes, read several books on childbirth, took copious notes on color-coded index cards (in three colors – one for each stage of labor), and made a list of preferences about labor and birth to review with my doctor.  #1 preference:  Water-birth (Laboring in a big bathtub; relaxing right?  I imagined my baby swimming around like the baby on the cover of Nirvana’s “Nevermind” album).  #2 preference:  Natural Childbirth (Like women through the ages, right back to cavewoman days).  #3 preference:  Epidural (Just in case, if I absolutely have to).  Things I wanted to avoid:  episiotomy (I’ll just let you Google this one) and c-section.

I read about c-sections and saw the movie about it in my childbirth class.  No one in my family had ever needed one, and since my pregnancy had been normal so far, there was no reason to believe I would need one either.  As I watched the c-section movie in class, I saw that they still put the newborn in the mom’s arms right after he was born.  I was thinking it looked like the easy way out – no pushing or sweating or crying.  They just hand you the baby.

OK, remember that the subtitle of my blog is “Life Lessons from a Cosmic Kick in the Pants”?

Cue Kick in the Pants. 

So my day of delivery arrives (ten days late), and here is a brief synopsis:  Water-birth – not possible. Natural labor – for a while until Pitocin is given.  Then, holy crap, all bets are off – just give me the damn epidural.  Complications.  Emergency c-section.

The complications had to do with my son, and the nurses worked on him for several minutes before holding him up for us to see, saying, “Here’s your baby boy!” and rushing him out the door to the NICU.

No trumpets or choirs of angels.  No sighs of small, woodland creatures.  My husband and I did look into each other’s eyes, but any tears were not tears of joy but tears of “What the hell just happened?”  Even if my son had not needed immediate care, holding him for “skin-to-skin bonding” would not have been possible like that movie had shown.  Both my arms were completely numb, and I was having difficulty breathing.

This was not beautiful.  This was traumatic.  And it definitely was not an easy way out.

Some of you might be thinking – it turned out fine.  You ended up with a wonderful little boy, so why does it matter how he was born?  It could have been worse, after all.  Indeed, it is shame that kept me from expressing my shock and sadness out loud.  After all, some women can’t have children, or have miscarried, or have lost a child.  I would not even suggest measuring my sadness with the same measuring stick used to measure their grief.

But this fact did not lessen the gnawing, hollow feeling I had for days after the birth.  I couldn’t quite identify it until a friend said something that finally brought it into focus.  “Hey!  It’s almost like you never gave birth!” she said.  I know she probably meant that all my “lady parts” were undamaged (and I had avoided the episiotomy after all).  But now my feeling had a name.

Failure.

Did I really not give birth?  Can I not claim a connection to my foremothers through the ages who sweated and cried and pushed their babies into the world?

Of course time has healed this wound, and I can honestly say that no, it does not matter how my son came into this world.  And yes, I did give birth to him, and it was not “easy”.  Maybe the scariest thing, the thing that set my universe on a different course, was that no amount of preparation could have prevented or changed these events.  They were completely out of my control.

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Welcome to My Alternate Universe

Published February 15, 2014 by Jen Rosado from MyAlternateUniv

I’m writing to you from my alternate universe.

No, I haven’t met my alter ego after being catapulted through some fissure in the “space/time continuum”.  And I wasn’t transported to another dimension to fight my evil twin to save humanity (however, that WOULD be a really cool story).  It’s possible I accidentally caused the untimely death of a butterfly, sending ripples into the future where I now find myself, but that’s not too likely because I generally try to keep my distance from insects of any kind.  Regardless of the reason, the truth is I find myself here, in this uncharted universe, living a very different life, and I am not the same person I was.

On some other timeline, on some other plane of existence, the old me is living the life I had planned.  I picture her to be a peacefully content, self-assured Super-Mom, and a bit of a smug know-it-all,…very likely an insufferable pain in the ass.  I’ll try not to judge her though because, bless her heart, she means well and doesn’t know any better.

So what’s it like in this alternate reality?  Well before I jump right into my adventures, allow me to provide some important back-story.  I have Generalized Anxiety Disorder, which I think means I feel a general sense of dread all the time without any specific reason.  We anxiety-prone folk have many coping strategies to help us navigate life (which, let’s face it, is an incredibly frightening bag of nails on a good day).  My go-to coping strategy is CONTROL.  By orchestrating the details of day-to-day life and carefully planning for every contingency, I try to avoid any situations that might throw me into a state of panic.  I am always on the lookout for obstacles or danger – I smooth the path ahead to lessen the fears I have about the future.

I suspect that someone was onto me, because not too long ago the laws of the Universe shifted and the control that I counted on as my protective shield was suddenly stripped away.  And just like a character in a sci-fi story, I woke up here…in this strange, unsettling, humbling, enlightening place.

Weird, right?  Weirder than you think, my friends.  It’s taken awhile for me to get my bearings and decide the best course of action.  When you unexpectedly find yourself in a life that is “almost, but not quite, entirely unlike” the life you expected…what should you do?  I guess you do the same thing you would do if you found yourself in any unfamiliar territory without the comfort of a well-planned itinerary:  1.  Focus on survival.  2.  Make observations.  3.  Take lots of field notes.  4.  Blog about your experiences (of course).

And so my adventures begin…

(Please note:  If you would like to read my adventures in order, click “birth” in the “Categories” column on the right and read the story titled “Birth – Alternate Universe Via C-Section”.)

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