Liebster Award – A Post-Thanksgiving Word Workout

Published December 3, 2015 by Jen Rosado from MyAlternateUniv

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I haven’t published a post in a while. Honestly, the past couple months have been personally challenging, and on top of that I’ve had writer’s block. Oh, I’ve had plenty of stuff to say, even jotted down notes and mapped out chapters. But when I sat down to write, the words didn’t dance lithely from my fingertips to the computer screen. Instead they plodded and slogged and stumbled onto the page, collapsing into a clumsy, discordant lines, and no amount of poking and prodding on my part convinced them to rouse and arrange themselves in a more suitable, artistically engaging fashion.

So I took a little break. Rearranged my office. Cleaned my house. Reconnected with some old favorites from my CD collection.

Naturally, my words felt neglected and ignored, and they petulantly reminded me that I HAD been nominated for a Liebster Award over the summer and couldn’t I at LEAST put them to work fulfilling my requirements as a nominee?

It’s true. What better way to whip my lazy, bloated, uninspiring words back into shape than to answer a few questions? It’s a bit like a long, refreshing hike the day after Thanksgiving.

Before I begin giving my words a workout, I’d like to thank Brandi at Destination Enlightenment for nominating me for this Liebster Award and for providing an inspiration to kick-start my writing again. Brandi is a fellow curious traveler on the journey of life, and her blog is thought provoking and meaningful. I highly recommend checking it out!

The Liebster Award rules:

  • Make a post thanking and linking the person who nominated you.
  • Include the Liebster Award sticker in the post too.
  • Nominate 5 -10 other bloggers who you feel are worthy of this award. Let them know they have been nominated by commenting on one of their posts. You can also nominate the person who nominated you.
  • Ensure all of these bloggers have less than 200 followers.
  • Answer the eleven questions asked to you by the person who nominated you, and make eleven questions of your own for your nominees or you may use the same questions.
  • Lastly, COPY these rules in your post.

(OK. You probably noticed the third rule about nominating other bloggers. Because I have not been actively blogging the past few months, I have yet to complete this task. I will be on the look out for bloggers who meet the above criteria and announce my nominations at a later time. My apologies!)

  1. If you could meet one famous person, who would it be?

I’d be lying if I said there were no celebrities I would be interested in meeting. I can think of lots of actors, musicians, and dancers with whom I’d love to sit down and have a cup of coffee. However, when I imagine such a meeting, I can’t help but think of the initial breathless, starry-eyed handshake, me stammering something about being a REALLY BIG FAN, then the inevitable awkward silence followed by the painful small talk one might expect when two complete strangers meet but one just happens to know, admire, and hold the other in high esteem while the other one…doesn’t. The days and months following such a meeting would be filled with worry and embarrassment about the stupid things I said and why I asked that question and what their tone of voice meant when they answered the question and so on. I would never be able to see their movies, hear their music, or watch their dancing again without being reminded of my self-consciously awkward social inadequacies. No sense creating unnecessary angst.

But the question doesn’t say “celebrity”; it just says “famous person”. And the famous person I immediately thought of that I’d love to meet is Pope Francis. I very much admire him because he is someone who leads by example, with wisdom, kindness, and humility. Although I’m not a church going, religious person anymore, I’m in the midst of a spiritual journey of self-discovery. So it would be pretty amazing to meet the Pope, benefit from his wisdom, and get all deep and philosophical talking theology over a cup of coffee (or tea, as the case may be). Besides, being the Pope I’m sure he’d be forgiving of my social foibles.

  1. What is the simplest thing that makes you smile?

This one’s easy: My son’s smile. He has the most beautiful, infectious smile…seriously, I’m not just saying that because I’m his mom.

  1. What is your favorite season and why?

Autumn is definitely my favorites season. The colors, the smells, the fantastic weather, the free admission to beaches and parks, the far more flattering and comfortable fashions (at least for some of us), and pumpkin flavored everything. Most of all – it’s “back to school” time!  Woo-hoo!

  1. What is your all time favorite food?

I love pretty much any food I do not have to prepare myself. My mom has said that I was born too late because of my love for Big Band era music and movies, but I’ll argue I was born too early because the food replicator from Star Trek’s Enterprise has not been invented yet.

I guess if I were to pick one specific food I would say “taco pie”. It’s a dish my husband invented to use up leftovers from taco night. Layer all the leftovers – rice, corn, meat, sauces, avocado, cheese, shells, etc. – in a pie plate, and heat it in the microwave. So yummy and easy! (Almost as easy as saying, “Computer! Chicken taco pie with low-fat cheese, please.” Almost.)

  1. What song gets you pumped?

I notice this question says “pumped” – not a song that inspires you or gives you chills or you can’t help but dance to or makes you cry every single frickin’ time you hear it – I can name oh, so many of those songs. This is a song that gets you “pumped”. If I want a song that makes me feel strong and powerful and loaded with adrenaline for an ass-kicking workout, I dive into my collection of old, heavy metal CDs and pull out Prodigy “The Fat of the Land” album, the song “Mindfields”.

  1. What was the most inspiring book you have ever read?

Being an elementary teacher in my previous universe, I had the pleasure of reading fabulous literature by children’s authors. One of my favorite books is “Morning Girl” by Michael Dorris. I read it to my 5th graders every year. It’s simple in its story lines, yet exquisitely written in such a way that it elicits empathy in the reader without hitting you over the head with sentimentality. I have also read other stories by Michael Dorris, and he has inspired my writing by painting beautiful images with figurative language and by allowing his characters to work through their emotions to discover deeper meaning.

  1. Any other interests other than writing/blogging?

Swing dancing! That’s how my husband and I met. We danced several times a week, belonged to two performance groups, and although we are horribly out of shape now, we can still break out the Lindy Hop and Charleston moves at weddings. (However, our days of lifts and aerials are over, I’m afraid.)

  1. Do you believe in love at first sight?

No. But I do believe in the idea of being on the same wavelength as someone. It’s kind of like the sound waves produced by music notes. Each note alone is beautiful. When combined with another note it can produce harmonic resonance or jarring dissonance. My husband is easy on the eyes, for sure, but I could sense an immediate connection when we actually talked for the first time. Our notes “blend” well.

  1. Are you multi lingual or do you know parts of another language?

Je parle juste un peu le francais. I learned a little French in high school. I remember enough to order food and to ask where the bathroom is.  Right now I’m learning sign language with my son.

  1. Who do you look up to or who inspires you?

My husband and son inspire me. They are the source of my writing material, the brightest stars in my galaxy, the light shining through my dark matter, the pull for my gravity, the action for my inertia, the chocolate center for my Lindt ball, the wind beneath my wings, and all that. They’re pretty awesome.

  1. What do you enjoy most about blogging?

I love connecting with interesting and amazingly talented bloggers from all around the world!!

 

So now my words are feeling useful and reinvigorated, all stretched out and ready for blogging again.  Thank you to my readers for not completely giving up on me!

 

 

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Clocks – The Comforting Forward Motion of Time

Published September 17, 2015 by Jen Rosado from MyAlternateUniv

When my 6-year-old son and I visit the local library, we aren’t going to read books together, attend a “story time” group, or even pick out an Elmo DVD to watch later. When we visit the library, we are there to see the giant grandfather clock in the lobby.

The library is an old building, and the heavy, wooden doors in the front leading into the lobby are rarely used. The official library entrance is now on the side of the building. Every time we enter, instead of taking a right toward the stairwell leading to the Children’s Section, my boy takes a left, making a beeline for the lobby to see “his clock”.

It’s a small lobby with two reading rooms opening from it on either side. Above is a beautifully painted dome ceiling, lit from within by lights hidden from sight by a ledge. The floor below is an intricate mosaic tile design arranged in a circular pattern. My son can’t help but see this pattern as a racetrack, albeit a tight one, so compact as to force him to run at a constant slant, angled toward the middle of the design. I allow him a few laps before redirecting his attention to the clock, standing proud and aloof in the corner of the lobby against a gray column.

He first examines its pendulum swinging behind the glass door. The clock’s dependable “tick-tock” sound is not annoying like that of smaller clocks. The hollow, dark wood cabinet in which the pendulum swings provides a chamber for the sounds to mature into rich, full, well-rounded “tick-tocks” – sounds of character, depth, and wisdom. The sounds of age.

The clock is tall, the face of it starting just above my head and the number 12 well out of reach of my outstretched hand. I pick up my son so he can get a closer look at the face, reading the numbers from one to twelve, pointing to each as I go. I match the rhythm of my counting to the rhythm of the second hand. Sometimes my son watches the clock face as I count; sometimes he watches my mouth.

Not too long ago, my son discovered small windows on each side of the clock cabinet that allow you to view the moving gears inside. Now, after I finish counting, I lift him a little higher in my arms, closer to the windows so he can get a better peek. He peers in, fascinated by the metal and movement.

After a few moments the spell is broken, and he wriggles down and takes off running, arms pumping, body tilting as he races around the mosaic tile racetrack. The steady pit-pat-pit-pat of his sneakers in forward momentum, round and around – circles, loops, laps – drawing often amused, occasionally disapproving looks from nearby library patrons.

“Clock” was my son’s first word at 11 months old. It was, indeed, an odd first word. It’s not exactly an easy word for a toddler to say, what with that tricky “L”. It came out “cyock”, but one can imagine it could have been worse. I remember his chubby fist reaching for the clock hanging on the wall in his playroom, the cheap plastic pendulum swinging rhythmically back and forth in its faux wooden frame. My husband would take the clock down and lay it on the floor so that my son could examine it closely, watching the second hand tick, tick, tick around the face.

The irony of my son’s obsession with clocks is that time moves steadily forward, yet my son’s development often seems to be in a state of limbo – no changes, no growth, no milestones to mark time’s passage.

Don’t get me wrong, my son is growing and changing every day like any other child. He is of average height and weight, and his fine and gross motor skills are exceptional for his age. The anachronism lies in how my son’s autism has affected his social and communication skills. Months, even years may pass with little progress to show for it. It’s frustrating and mysterious.

Not long after his first word, “cyock”, his words disappeared. The clock measuring my boy’s social and communication skills slowed seemingly to a stop, the second hand hiccupping in the same spot on the clock face – stuck at that moment in time while the gears continued moving in his head.

There were so many things getting in the way of his learning, including obsessive compulsive and self-stimulatory behaviors – like pouring sand from his hand slowly in front of his eyes over and over, and sensory integration behaviors – like his constant need to run and jump and crash.

Time was measured in the sand slipping through his fingers and the continuous pit-pat-pit-pat of his moving feet. But there was no eye contact, no pointing, no imitating, no interest in pleasing the adults around him – none of the social skills necessary for a young child to learn to communicate.

Yet amazingly, time was working its magic, only on a very, very delayed schedule. In his 4th year, my son showed consistent signs of attention and eye contact. At 5 years old, he showed joint attention and the ability to follow where someone pointed. And finally at 6, he began showing an interest in pleasing others, imitating some actions and sounds, and understanding basic receptive language. It’s a bit like a fog lifting, the way he has suddenly become aware of the world. Maybe that’s the way all children become aware, only he’s on a much slower time scale – like I’m watching his development in slow motion.

There is a cadence, a rhythm we come to expect in life. It’s distressing when things are out of sync. Sometimes I feel as though I can see the gears moving in his head, like peering in through the windows on the side of that grandfather clock. My son is learning in his own way, in his own time.

I just need to be patient and take comfort in the forward movement of time, in the hope it offers, and in the character, depth, and wisdom it may bring – both for my son and for me.

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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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“Normal” – My Life As A Fish

Published July 1, 2015 by Jen Rosado from MyAlternateUniv

Once upon a time, I was not a fish in a fish tank. I was a normal person with a normal life. My hopes and dreams for the future were average, typical, normal hopes and dreams built on average, typical, normal expectations of what life should be.

But autism changed things, turned normal on its head… turned me into a fish.

And so here I am, swimming around this fish tank with my little fishy son.

We spend our days swimming laps together, my boy and I – first to the plastic seaweed, then to the bubbling treasure chest, then through the pink coral tunnel, and finally along the glass at the front of the aquarium back to the seaweed again. Round and around, stopping at regular intervals to nibble on flakes at the surface.

We stick to the same routine. It’s comforting. We know what to expect.

Every once in a while, I notice the world outside our aquarium. My motion slows and I’m drawn closer to the side. I press my fins against the glass and watch.

Sometimes I notice other moms at the playground, smiling and chatting, relaxing while their children play independently on the play-scape and in the sandbox nearby. I can observe them through the glass, but I cannot join them.

Other times I witness the excitement of time off from school or work – the anticipation of a weekend, the joy of a vacation, the thrill of an unexpected snow day. I smile, remembering, but I do not share in the celebration.

By far, the hardest days to view from inside the aquarium glass are holidays because the scenes I observe are accompanied by memories of my childhood when holidays were the happiest days of the year. Those are the days I’d hoped to share with my son, to recreate the magic I felt when I was his age. For me, they stand as a measuring post for happiness. It’s what I cherish, what I know. It’s my normal.

But these special events – the trips to the playground, vacation days, snow days, holidays – they do not make my son happy. They stir up our fish tank and disrupt our routine. His life is thrown into turmoil, and our tank becomes a dizzying maelstrom of confusion and anxiety. Our little fish bodies are whipped around, buffeted by algae and bits of debris churned up from the bottom. Sometimes I can’t tell which way is up, so I just hold onto my boy and wait for the water to calm, the debris to settle.

When peace is restored, we take comfort once again in our routine:
Plastic seaweed, bubbling treasure chest, pink coral tunnel, nibbles of food.
Plastic seaweed, bubbling treasure chest, pink coral tunnel, nibbles of food.

When I first became a fish in this fish tank, to look beyond that thick glass at the world outside was painful. The yearning for “normal” was almost unbearable.

From the preschool parking lot, I watched the children playing on the equipment, chasing each other, shouting and laughing, while my son wandered the perimeter fence of the playground, separate and alone in his own fish bowl world.

My heart ached. I wished for him to play and have fun and enjoy the company of friends. I wished for normal.

I saw his classmates dressed in elaborate Halloween costumes, sitting around a big table together eating a special Halloween snack, their parents snapping pictures, while my boy sat on his para’s lap at a table across the room doing a puzzle. He was agitated and whimpering, bewildered by the chaos.

I took him home and hugged him close, held him until the waters calmed. My salty tears swirled and mixed and disappeared, lingering still as part of our aquarium world. And I wished. Oh! How I wished for normal!

But I must say, the more time passes in our fish tank, the easier it gets. I spend less and less time with my face pressed against the glass, longing for the “normal life” on the other side.

Because I know I will only drive myself crazy and remain unhappy if I don’t adjust my expectations and stop wishing for a normal that no longer fits my reality.

And the reality is that my son requires constant supervision, guidance, and emotional support at the playground and at social gatherings.

The reality is that snow days, vacation days, and holidays are stressful for him because of the lack of structure, overstimulation, and disruption of our routine.

The reality is that schedules and routines make my son comfortable and happy; Crowds and surprises do not.

These realities will not be changing anytime soon. I have to change me instead. And the truth is, my deep pain and disappointment stems from expectations based on my childhood experiences and my dreams for the future. I have to let go of these ideas of “normal” in order to enjoy my son’s moments of happiness, his “special days”.

Maybe he will never like dressing up for Halloween to go trick-or-treating. Maybe he will never anticipate the arrival of Santa. The memories he will cherish of Halloween may be the smell of fall leaves and the feel of the crisp, autumn breeze on his face. His memories of Christmas may be filled with visions of colorful lights and the sounds of crinkly wrapping paper.

Or maybe his memories won’t be of holidays at all. A day does not need to be marked as such on a calendar to be a special day for my boy. It might just be a day when he is feeling well, when he’s had a good night’s sleep and enough to eat, when the moon is in the correct phase and the stars are properly aligned. He’s just happy. Insanely, contagiously happy. It’s a special day – he doesn’t need a reason.

Special moments just happen. Memories make themselves.

I’m not going to lie, the pain is still there – the ache I feel for me, for my son. Sometimes I still slow down and gaze at the world on the other side of the glass. I allow myself a moment or two to feel the sadness – after all, my feelings are not any less real. But once the moment passes, I push myself away from the glass and continue moving forward, swimming laps with my boy. I focus on keeping the waters calm, remembering that when he is happy, I am happy. And we celebrate the special moments when they happen.

It’s not average. It’s not typical. But my family and I – we create our own “normal”.

(Dedicated, with many thanks, to those who dive in and swim with us!)

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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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Beauty – How My Son Speaks Without Words

Published September 12, 2014 by Jen Rosado from MyAlternateUniv

“To see a world in a grain of sand,
And heaven in a wild flower.
Hold infinity in the palm of your hand,
And eternity in an hour.”
-William Blake

In our side yard, there is a giant maple tree. Two things make this tree special: 1. It has dark crimson leaves that stand out from the green of the surrounding trees. And 2. My boy loves this tree and thinks it is beautiful.

Truth be told, this tree isn’t in OUR side yard. It’s actually in the neighbor’s yard, but its lower branches reach out over the fence into our yard. And, truth be told, I really have no idea if my boy loves this tree or thinks it is beautiful.

My son has autism and is non-verbal. He cannot express himself through words or language at this point, and it was only a little before his fifth birthday that he showed signs of understanding what others were saying to him. Something as simple as following a request to “pick up the ball” or answering “yes” or “no” to a question are skills he has not mastered yet.

To know that my son loves the crimson maple tree in the neighbor’s yard, I need to interpret the clues he gives me…like the fact that he sometimes stops running and stands staring at the tree as its branches sway in the wind…or the way he sprints through the yard with his head tilted up towards it shouting, “I-yeee!” with a huge smile on his face…and how upset he got when he found one of its leaves on the ground and handed it to me, indicating that he wanted me to put it back on the branch from which it had fallen.

Yup, I’m pretty sure he loves that tree.

One wish I have always had is for the ability to climb inside his head – to see what he’s thinking and understand how he sees the world. Ever since he was first able to pick up and observe objects, sprinkle sand, and pour water, my son has, at times, become fixated in these activities, performing them over and over. I find myself wondering what he sees, what he’s thinking.

Why does he bring toys close to his face, moving them from the middle to the very periphery of his vision field?
What does he see when he scoops a handful of sand, lifts it to his eyes, and allows it to slowly trickle back into the sandbox?
What observations does he make as he watches a handful of pebbles bounce off the plastic table, the rubber ball, the metal railing?
What questions fill his mind as he drives himself crazy trying to catch a drop of water between his thumb and forefinger has it falls from the end of the hose?

Without language, without the ability to communicate, the workings of his mind remain inaccessible to me.

I’ve been told that he focuses on tiny grains of sand, water drops, toys, and other small objects to block out a world that is overwhelming to his senses. I have no doubt that this is true. But autistic people who have found language, like Temple Grandin and Naoki Higashida, lead me to believe there might be more to it.

Maybe it’s not just blocking out the world, maybe it’s also appreciating the world in its most minute detail.

Children his age are usually full of imagination and questions. I would think he is just as creative and curious, but without language he must make sense of his world through observation alone. His brain must find a different way to think thoughts, organize them, and learn from them. I’m guessing his imagination and the stories he invents must be quite unique, indeed!

At a recent play date, I watched three children the same age as my son running from the sandbox to the porch where they sat with their feet dangling from the edge as they sprinkled handfuls of sand onto the cement sidewalk below. Chatting happily with each other, they repeated this over and over, until I finally asked what they were doing. “Feeding the sharks!” they said.

Huh! Well, of course! The clues were there, weren’t they? After all, the route they took from the sandbox to the porch always avoided the cement walkway. And they were being very careful not to dangle their feet too close (although apparently the sharks were of a friendly variety). And how else would you feed sharks but to sprinkle food from above?

See, a child’s mind works differently from an adult’s mind…an autistic child’s mind, even more so. I was able to put the clues to the shark story together only after they had explained with words what they were imagining. With my son, however, there are no words for him to explain his thoughts. And the clues he gives to the inner workings of his mind can be as frustratingly elusive as that water drop that he just can’t capture.

But sometimes, when I’m really lucky, I feel like clues ARE there.

Like when my boy scooped up a handful of sand and ran across the yard, opening his hand and releasing a sand trail into the air as he went, I saw the joy on his face and tried to imagine what he was seeing. Perhaps he imagined something far more beautiful than just sand. Maybe to him it glittered and sparkled as it fell back to the ground, a tail for my little “comet boy” as he flew toward the sun.

I’m a writer, a lover of words and language. But I’m learning that thoughts can be conveyed in much simpler and subtler ways. It’s a form of communication that requires me to pay close attention, to act as an interpreter, to give words and meaning to the clues my son is sharing from his inner world.

On a sunny afternoon not too long ago, my son ran around the corner of the house and came to a stop. He was staring at his tree. I walked up beside him, and he looked up at me, his eyes shining. I sat down next to him in the grass, and he climbed onto my lap, and there we sat, gazing at the crimson maple tree, listening to the sounds of the birds and insects. His little body, usually bursting with movement and energy, was quiet and relaxed, watching.

He was smiling.

He was communicating.

He was sharing with me, the same way another child might point and say, “Look, Mommy! That tree is beautiful!”

He was telling me to stop, to pay attention, to not just acknowledge the tree’s existence, but to experience its beauty.

And it really IS a beautiful tree.

You know? Maybe my son CAN see heaven in a wildflower.

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