sensory processing disorder

All posts tagged sensory processing disorder

Communication – The Detours Connecting One Universe to Another

Published April 29, 2017 by Jen Rosado from MyAlternateUniv

Nothing frustrates me or gives me more anxiety on a journey between point A and point B than having my forward momentum slowed or stopped by the noisy, confusing gridlock of traffic.

So crazy it makes me that I often take the next available exit and try to feel my way through back roads and byways, guided by road signs, GPS, and even old-fashioned paper maps. Despite the traffic lights and stop signs, the slower speed limit and occasional wrong turn, a detour can be far less stressful to me than remaining stuck, mindlessly inching along, bumper-to-bumper on the jam-packed highway.

Inevitably, I arrive at my destination much later than expected, but eventually I do get there.

I imagine for the average child, learning to speak is much like traveling on a highway on a “good traffic day”; some children ride in the fast lane, others in a slower lane, but they hit their milestones and arrive at functional speech within a statistically average amount of time.

That journey can be quite different for a child with autism.

My son has spent much of his journey stuck in traffic, his brain overloaded with information from his senses – a confusing, noisy gridlock of signals that are difficult to filter and process properly. And a mind constantly distracted by the need to lessen overwhelming sensory stimuli (and the accompanying intense anxiety it creates) is a mind unavailable for learning.

We spent years wondering when, or if, he would ever learn to speak. Anytime we heard of a case of an autistic child learning to speak attributed to some new approach, we felt a resurgence of hope. Here was a new direction to try, a new mountain to climb with a world of possibility waiting on the other side. Maybe this was the magic detour that would help my son find his way!

But autism presents uniquely to each individual, so it should come as no surprise that what works for one person might not work for another.

Looking back, we tried many different techniques and therapies – some more helpful than others, some not helpful at all, and some helpful but not necessarily effective if presented too early – like pointing out a detour far ahead when our boy still hadn’t even found an exit off the congested highway. For a long while, it seemed he didn’t even notice us waving and shouting, trying to get his attention from the side of the road. He just wasn’t available for learning in those earlier days.

This universe is composed of small victories, not magical, overnight successes. Here, movement takes the form of baby steps, uneven and unbalanced – three steps forward then two steps back, with the occasional fall on the bottom. “Miracle breakthroughs” are the result of hard work – inches of slow, almost imperceptible progress made over days and months and years that eventually add up to a milestone.

But I’ve learned that hard fought battles make those small victories feel like miracles.

A few months before his sixth birthday, we finally heard our son speak. His voice was the most beautiful sound – a delicate, musical whisper, perfect in its imperfectness.

You might remember that my son’s “first” first word at 12 months was “clock”. Well, my son’s “second” first word at five and a half years old was…

The alphabet.

Not all at once, mind you. He started (obviously) with A, then B, C, and D, and on from there. He loved the alphabet song and capital and lowercase letters and the way they lined up side by side in straight, neat rows to form words. (A boy after my own heart, I must say).

It was then that I truly began to appreciate the amazing complexity of human communication. “Speaking” doesn’t always mean “communicating”. The alphabet is not a word that conveys meaning. Yet while the sounds he was making did not express a thought or need, he was actually communicating – by looking to me for approval or celebrating his accomplishment with claps and cheers. So indeed, through the alphabet, my son was interacting with his world.

 

 

The fact that he had learned the alphabet song offered a clue to the inner workings of our boy’s brain. We discovered that my son learned best when words were taught through songs or paired with visuals or sign language. Music, movement, and pictures were signposts guiding his brain through detours, like a GPS “recalculating” the route to get around the traffic jam on his neural highway.

Words popped out intermittently in the months that followed. He said “cup”, “bowl”, “cookie”, and “baby”, all accompanied by their correct signs, apparently stored in his memory banks after years of watching sign language videos from “Signing Time” and “Baby Einstein” over and over.

To our confused delight, he loudly sang, “Ha-So-Me-A-Toe” for weeks before performing the correct movements to indicate it was his personal rendition of “Head, Shoulders, Knees, and Toes”.

Then a few months after his sixth birthday, my son said his first meaningful word – “more”. Not some boring, monosyllabic, 2 second “more”, mind you, but a long, drawn out, sing-songy, “auditioning for the musical Oliver Twist” sort of “more”.

He used it in the correct context as a request and accompanied it with the correct sign. It was an exciting breakthrough!

So that’s it, right? I mean, once he says a word and understands the concept that saying a word as a request causes the big people around him to give him things he wants, that should be the key, the light bulb, the lightning bolt. Like Helen Keller’s sudden understanding of the word “water” signed in her palm at the water pump, surely this was the moment of connection from which all other words would flow.

That’s of course the idea we always had – that once our son made the connection between words and the world around him, more words would quickly follow. “Almost overnight,” people would joke, “he will be speaking in sentences, and you’ll be wishing for a moment of peace and quiet!”

But autism and language and human behavior are mysterious and complex. It’s as if our boy had arrived at his language milestone after a long detour only to find himself surrounded by a thick fog. For my son, processing the signals from the outside world, and even from within his own body, is not an easy task. Making that connection and formulating some kind of response, whether verbally or with signs or picture cards, requires a great deal of focus and concentration. It does not come easily.

Naturally, motivation becomes a big factor, because if you work really hard at something it helps to know you will be getting something really great in return. Otherwise, you’ll find an easier way to get what you want that doesn’t require as much effort. And therapists through the years have discovered something that we, his parents, already knew to be true – our boy is not motivated by many things. Food items hold little incentive for him, and toys only motivate him in their novelty.

The truth is, offering incentives to move forward in a thick fog may get him moving again on the road to communication, but his progress will always be slow. Even now, a year and a half after that word “more”, he’s still inching his way carefully through this confusing territory.

So while we continue to cheer our son on as he makes his slow and steady journey on the road to communication, we also try to lift the fog a bit and make the going easier. His speech sessions are paired with OT or PT, music is incorporated into his lessons, and his therapists are trialing different communication devices and programs to find the perfect match for his learning style.

We need to meet him where he’s at, drive at his pace, and guide him the rest of the way.

After all, in teaching my son to communicate we’re not just hoping to hear his voice, we’re hoping to understand his wants and needs and interests, to get to know all there is to know about the wonderful little person he is by building roads and finding detours to connect his universe to ours.

 

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

Published December 5, 2014 by Jen Rosado from MyAlternateUniv

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

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

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

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

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

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

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

A very, very good reason.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Acceptance – What’s in a Label?

Published October 17, 2014 by Jen Rosado from MyAlternateUniv

I waited in line at the library, my two-year-old son on my hip and a book in my hand. The librarian smiled at me and glanced at my son as she scanned “Making Sense of Autistic Spectrum Disorders”, by James Coplan, into the computer. I wondered if she was thinking the same thing so many others had said aloud – “He doesn’t look like he has autism.”

But my husband and I had already been down that road. We had gotten past the denial pretty quickly once the clues fell into place. We knew he had autism.

Now the question was, where do we go from here? Naturally I started doing research, beginning with…

The Internet.

Ahh, the Internet. Before long, I was caught up in this expansive, bewildering, sticky web of information and misinformation. It was completely overwhelming.

I asked one of my son’s therapists if there was a good book about autism basics. She didn’t think such a book existed.

But at least one book DID exist. I found it at the library, one of just a few on the library’s “Autism” shelf. I returned it a few days later, having bought my own copy that I read cover to cover, marking up and bookmarking pages with post-it notes.

Dr. Coplan’s book was exactly what I had been looking for. It began with several case studies from his experience diagnosing and treating children with autism. Each case he described represented a different level on the autism spectrum, from low, to moderate, to “high functioning”. As I read the cases, I tried to imagine which child was most like my son.

I had assumed my son would be considered “high functioning”, which is also known as Asperger Syndrome. But reading the case study for Aspergers, I realized my son did not exactly fit the description. From what I read, children with Aspergers begin talking “on time”, sometimes early, developmentally. They are often precocious “little professors”, highly intelligent, but lacking in social awareness and skills. My son, although he had social skills deficits and appeared quite intelligent, did not have language at two years of age.

I often hear parents of children with special needs say they were given the worst-case scenario from the start and were determined to prove everyone wrong about their child. I encountered quite the opposite. One of the therapists who gave us the official diagnosis of autism was quick to reassure us that many children who start off on the spectrum end up fully integrated into the regular education classroom. “Sometimes we’ll check in on a child we haven’t see in years,” she said, “and, aside from a few quirks, you wouldn’t be able to tell the difference between them and their peers.”

Our son had many quirks and atypical behaviors, also called “stims” or self-stimulatory behaviors. (Simply put, self-stimulatory behaviors are repetitive behaviors like rocking, jumping, spinning, finger-flicking, etc. that satisfy a sensory or emotional need.)

He also wasn’t speaking.

“Not to worry,” we were told by friends and therapists alike. “When he’s ready he’ll wake up one morning and start talking in complete sentences! You’ll see!”

I imagined my son looking up from the tray on which he had smeared his dinner with his chubby little hands to announce, “I dare say, Mother, I am enjoying these peas ever so much. Please, may I have some more?” (Of course I also imagined this would be in the accent of a British schoolboy, with an air of intelligence and sophistication befitting a non-verbal toddler who suddenly speaks in full sentences.)

A part of me believed that, accent or not, my boy WOULD miraculously begin speaking some day. His behaviors would diminish and, with the right therapies, he would be considered “high-functioning”.

It was in this frame of mind that I read the chapter about Intensive Behavioral Interventions, including DTT – Discrete Trial Training (what our school calls DTI – Discrete Trial Instruction). Despite the fact that the child described in this case study was nearly a perfect match to my son, I was nonetheless convinced that my boy was “not that autistic”.

This particular example of a DTT session involved two therapists helping this little boy learn to respond to the command, “Sit!” When one therapist said, “Sit,” the other therapist would guide the child to the chair and gently sit him down. The child was rewarded with a treat or praise or tickles, after which he would jump out of the chair and return to his preferred activity. This was repeated until eventually the boy would come and sit down on his own when he heard the “Sit!” command.

To me, it sounded like training a dog, and I was not going to let someone teach my child in such a way. There had to be better methods.

DTT falls into the category of ABA (Applied Behavioral Analysis). I read the rest of the chapter about the types of ABA therapy that might be helpful for my son, but they sounded like incredibly boring ways to learn. As a teacher, I couldn’t wrap my head around the idea of teaching skills in such a rote fashion.

So my husband and I pursued other kinds of therapy. We took our son to a special gym for sensory integration with an Occupational Therapist. We requested speech therapy through Birth to Three. We even volunteered to be a case study for a graduate student’s thesis in exchange for free play therapy similar to Greenspan’s “Floor Time” approach.

All of these interventions were helpful. Our OT taught us techniques to address our son’s sensory processing disorder. The Speech Therapist introduced us to the Picture Exchange Communication System in hopes that our son would learn to use pictures to communicate. Play therapy made big improvements in our boy’s eye contact and engagement.

But something was missing. Things just weren’t clicking. As my son approached the age of three, he still could not imitate sounds or gestures. He still could not interact with others or play with toys appropriately. He was in constant motion – running, jumping, crashing. He seemed incapable of focusing on anything or anyone long enough to learn.

That was it. Our son wasn’t learning.

His baby book had a page where you fill in all your child’s “firsts” – first time he sat up, first time he ate solid food, first time he walked. My son’s page was blank after his first year. No first words. No first time he waved bye-bye. No first time he sang a song, drew a picture, went potty, made a friend. All blank.

I realized that I had been holding onto a hope that my son fell somewhere on the higher functioning end of the autism spectrum, because to even consider the idea of my son being “moderate” or “low” would somehow be “giving up”. After all, if I allowed myself to admit that possibility, wouldn’t that mean I was lowering my expectations of who he may become and what he may accomplish?

A month or so after my son started an integrated special education pre-school program I met with his teacher to discuss his progress. I listened quietly as she described my boy’s inability to sit in the morning circle with the other children, how his lack of receptive language made it impossible to follow directions, how all of his work was done with the hand-over-hand help of a teacher, how he wouldn’t stay in his chair long enough to complete a task.

I thought of the child in the book who needed to be taught how to sit. That WAS my child. My son needed to be taught HOW to sit, HOW to pay attention, HOW to imitate, HOW to learn. ABA therapy may have seemed an incredibly boring way for ME to learn, but it might be exactly what my son needed.

At the next official team meeting, my husband and I requested ABA therapy as well as a one-to-one paraprofessional to aid my son throughout his entire school day. Not surprisingly, his teachers had been considering the same route, and it wasn’t long before his program was changed to start meeting his needs.

His teacher kept me posted on new methods and ideas they were trying. They hired a paraprofessional who was trained in ABA, and she would be doing DTI with my son several times a day. Oh, and they had set up a special learning area for him in the supply closet.

OK, I know what you’re thinking. And, honestly, if you had told me five years ago that I would be supportive of my son being taught in a closet, I would have thought you were nuts. You should know that this was more like a small room, maybe 6ft by 8ft, with two doors, one for each preschool room on either side. In it they had placed a small, adaptive desk (with foot rests and a moveable work tray) and a chair for his para. Although it was a little cluttered with supplies, it was far less stimulating than the classroom. And though not perfect, it provided a quiet, calm environment in which he could focus without sensory overload.

One morning a few weeks later, I brought my son into the classroom at drop-off time. His para guided him through hanging up his coat and backpack, but instead of running around the room or heading for the radiator to line up all the magnetic letters my son did something amazing. He headed right for the closet door and pulled on the doorknob. “It’s not time yet, Buddy!” his teacher said, but he continued trying to get in. She opened the door and in he ran, right to his little desk. Positioning his feet on the footrests, he pulled the desktop to his chest and sat quietly, ready to learn.

It was clear – my son was learning. What’s more, he was ENJOYING learning.

I realized that this method may not be my style, but my son found the routine and predictability calming. It made sense to him.

I also realized that whether he was high or low functioning, it didn’t change the deep love I felt for my son, only the therapies we would seek to help him. So yes, the label served a purpose, but it didn’t define who he was. It didn’t predict his future.

Acknowledging where my son is on the autism spectrum at any moment in time doesn’t mean I’m giving up or lowering my expectations. It means I’m accepting him for the wonderful, amazing little person he truly is… just as he is.

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Works cited:
Coplan, James. “Making Sense of Autistic Spectrum Disorders”. Bantam
Books/Random House Publ. Group. New York, 2010.

Happiness – A Trip to the Dollar Store

Published July 17, 2014 by Jen Rosado from MyAlternateUniv

So far, I’ve been writing my blog in chronological order. I like it when things are in order. It makes me happy. However, sometimes a totally blog-worthy story presents itself and rules have to be broken. If and when I publish my book, this will be a later chapter, in its correct chronological spot. This will make me happy. Until then, please enjoy this story in all its blog-worthiness:

Not long ago, I decided it was time to desensitize my four-year-old son to shopping. His autism and sensory processing disorder have always made shopping with him very challenging. I can’t be sure exactly what it is about stores that cause my boy so much anxiety. At school he had to be desensitized to the gymnasium, which absolutely terrified him. So maybe part of it was the largeness of the store and its tall ceilings. Then again, his senses have always been very sensitive, and all the hustle and bustle of a store, the colorful products and packages on tall shelves, the beeping of registers and loud announcements and such – it’s a lot to take in and process all at once!

And then of course, there are PEOPLE. My son will go to great lengths to avoid people. He will take himself as far from people as possible, keeping a constant eye out for an escape route. It doesn’t matter if it’s a store, a playground, a gathering of family members, a play date with friends – there is something about people that inspires a fight or flight response.

Obviously this is something we need to work on.

I began my quest for desensitization by taking him into the local country market in town. The first few times he clung to me as we did one quick walk around the perimeter aisles of the store. Next we graduated to walking up and down the aisles, picking out a banana or yogurt, then standing in line and making a purchase. His need to drag his hand along the products on the shelves and his fascination with the floor tiles prompted me to carry handi-wipes, but otherwise he did really well!

Next we tried Kmart – bigger store, but not huge crowds of people. He hesitated as we walked through the doors and tried to pull me back out. Once he resigned himself to the fact that we were, indeed, going into Kmart, he held tightly to my arm and walked quickly and purposefully around the outside aisles. We were not going to stop to look at anything, not even toys – his body language made that very clear. He wanted to get out of there as soon as possible. He looked down each aisle in hopes of catching a glimpse of the exit, and he damn-near sprinted when we got within sight of the glass doors. I gave him hugs and lots of praise when we finally walked out into the sunshine.

We made other excursions into stores like Stop and Shop and Kohl’s. Toys-R-Us was interesting: Despite being a happy destination for most children, my son didn’t make it past the first display before he was pulling my husband and I toward the exit in a panic.

A few days after the Toys-R-Us attempt, I decided to try taking my son to the dollar store with me. I needed to buy some plates and party favors for his birthday, and I thought it would be a good opportunity to practice shopping and waiting in line.

Entering the dollar store was similar to other store experiences. He hesitated at the door, turning to me with his arms up indicating that he wanted to be carried. I hoisted up my 40-pound boy and hoped that I wouldn’t have to carry him around the whole store.

It turns out that, no, I would not have to carry him.

As we walked in, a look of absolute joy came over my son’s face. He gazed around the dazzling, magical wonderland that is the dollar store, slid down from my hip, and laughed, saying, “Iiii-yeee!” (My son is non-verbal, but he makes vocalizations that often indicate how he is feeling. This particular vocalization is one of his “happy sounds”.) I took his hand, and we walked down the first aisle where the paper plates were found. He touched the shrink-wrap on the colorful plates and cups and tried to reach the balloons that were bobbing from a display. “Iiii-yeee!” he laughed.

“I know, Buddy! This place IS great!” I was thoroughly enjoying his reaction. He was smiling and laughing and jumping up and down, having fun exploring the store, completely ignoring the people around him. A lady nearby smiled and commented how adorable he was.

At some point his happiness became so overwhelming it could no longer be contained – he just HAD to let it out. My arm pulled downward with the weight of his body as he sat down on the floor and kicked his feet in an excited frenzy.

This, of course, reminded me of the first time I had shopped in a dollar store: “You mean THIS is only a dollar?! No Way! What about this? This is only a dollar, TOO?! This place is AWESOME!” So that’s pretty much what I imagined my boy was saying as he made happy sounds and kicked his feet on the floor: “Mom! All this stuff is a dollar! Can you BELIEVE it? This place is AWESOME!”

I picked him up off the floor and crouched at eye level to him. “No, Honey. We don’t sit on the floor. We walk in the store.” He might not have understood the words I was saying, but I was pretty sure he got the message that he was not supposed to sit on the floor and kick.

Or, maybe not.

We continued through the store – me, choosing plates, decorations, and some glow sticks for party favors; my son, sitting down every few feet to kick and laugh.

In the toy aisle, my son’s excitement exploded into a supernova of wild exuberance. He found a display of plastic toy megaphones and started pulling them out of the box and throwing them on the floor, creating an obstacle between us. Then he took off in a sprint, not entirely unlike a criminal in a police drama, dumping a trashcan over to slow the pursuit of the cop chasing him down an alley. I’ll admit, it kind of worked. I hesitated, trying to decide if I should chase him or clean up the mess he had made first. It didn’t matter, because ultimately his get-away was foiled by his inability to resist the urge to sit down and kick his feet. I captured him before he made it around the corner and, holding him tightly with one hand, cleaned up the megaphones.

At this point I realized that my boy was a bit TOO comfortable in this store. It was time to leave.

We waited in line, the weight of my boy pulling me sideways as he hung limply from my arm, laughing. I reconsidered the glow sticks as the thought of my son biting into one of them and the subsequent calls to poison control entered my head. I put them on a nearby display, paid for the rest of my things, and carried my boy from the store (because now apparently he didn’t want to leave).

During the car ride home, I found myself imagining my son five or six years in the future. A four-year-old, sitting on the floor in a store, kicking and laughing with joy, is kind of cute. But what about when he is ten years old? His behavior will not be so cute then. He will be bigger, heavier, and quicker, and his escape attempts might be more successful. It’s scary to think about. Perhaps by then, after years of practice, he will learn the appropriate behavior for when we’re out in public and not be so enamored by magical places like the dollar store.

I looked at my son’s smiling face in the review mirror. I really didn’t want to lose that innocent joy. Maybe we could find a way to keep the joy, just teach him to contain it and express it in a way that won’t make him a danger to himself or others. And, hey – if he wants to laugh and let out a few “Iiii-yee’s”, so be it.

Heck, I might just join him in his celebration, because he’s right…the dollar store IS a pretty awesome place.

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