control

All posts tagged control

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.

Luck – The Humbling Unpredictability of the Dinosaur-Filled Island of Life

Published August 4, 2015 by Jen Rosado from MyAlternateUniv

I’ve written about fate and destiny and cosmic conspiracies, but luck? Luck was something to which I hadn’t given much consideration.

In fact, I used to bristle if someone said I was lucky. Saying “you’re lucky” makes it sound like you’re undeserving, like good things had come your way by chance rather than through hard work and perseverance.

Of course, when “bad luck” struck and things didn’t go as planned, I used to comfort myself with the belief that everything happens for a reason, and there was a significance I might not understand for years or even a lifetime. The comfort was in the knowledge of a larger purpose – everything would work out in the end.

But I understand now that some things just…happen. There is no reason.

Whether you want to call it luck or chance or happenstance, some things in life are random and unpredictable. The very thought of this makes a wild-eyed, breathless, hand-wringing control freak like me break out in a cold sweat.

Honestly, in the grand scheme of life I still believe in a higher purpose – the gifts we were born with that, with hard work and perseverance, lead to what could be considered our “destiny”. But I’m struck by the reality of just how many things in life are determined by mere chance:

At birth: your genetics, innate talents and intelligence, who your parents are, and where you are born – all beyond your control. As a child: your health and nutrition, socio-economic status, and the opportunities available to you to learn and develop skills – again, beyond your control.

It is not until we reach adolescence and young adulthood that we begin to realize some semblance of control. At that point in our lives it’s easy to attribute our achievements only to things that are within our power (like good-old hard work and perseverance). Although luck is all around us in different forms – from fabulous blessings to miserable misfortunes, it’s easy for this fact to be lost in a youthful sense of destiny.

Through experience, I’ve lost a bit of that self-assuredness. There are times when life is less like a box of chocolates and more like a dinosaur-filled island after a tropical storm has knocked out the electricity to the T-Rex and velociraptor paddocks with the supply ship having already departed for the mainland leaving you at the mercy of genetically engineered, carnivorous beasts.

It is, indeed, humbling when there’s a humungous T-Rex eyeball staring in through your window in the form of a pink slip or medical diagnosis or any of a million unforeseen challenges life may throw at you.

It might be mental and emotional fortitude, a soaring intellect, an amazing talent, athletic ability, or quick-wittedness that saves you from being devoured by life’s monsters…if you were indeed lucky enough to be born with such attributes and lucky enough to have had the opportunity to hone such skills.

But even then, you might need help.

I’ve written about my son being on the autism spectrum. The truth is we’re all on a spectrum of sorts, with different levels of abilities and assets to utilize and disadvantages and deficits to overcome.   It’s how we take advantage of the good luck and how we adapt to the bad that sets the course of our lives. It helps shape our character – a character that is ultimately defined by our words, our actions, and how we treat our fellow human beings.

Looking back I realize there have been times in my life when victories came from battles long fought. And, yes, there were times when good things happened seemingly by chance. But it strikes me that, especially in my most anxiety-provoking, dinosaur-filled moments, my good luck came from the kindness of others.

You can’t always be airlifted off your island, but a much-needed supply-drop, the guidance and advice of experts, or even just some words of support and encouragement can make a world of difference.

So I guess you could say I’ve been lucky. I’m grateful for the talents I possess and for the opportunities that have presented themselves along the way, but mostly I’m grateful for family and friends and people in my community I’ve never even met who have helped and supported me when I needed it most.

I truly have an amazing village helping to raise my son.

Whether life is a Whitman Sampler or Jurassic Park, the significance of our struggles and sorrows is their ability to connect us to others, to build understanding and empathy.

And the beauty in this colorful spectrum of humanity is our ability to use our gifts as a positive force in the lives of others – to be a source of someone else’s good luck.

 

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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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