Overcoming Sensory Dysfunction (Part II)

Seb has made much progress in overcoming his intolerance for hand dryers, yet he pleads that all the windows in the house be closed whenever the sprinklers are watering the landscaping. It seems he cannot stand for the incessant sizzling sounds of spraying plant drink. He begs us to turn them off.

Our current mitigation plan includes closing all of the downstairs windows while the sprinklers quench the thirst of parched palms. As the summer continues to heat up, open windows cool the house. To optimize the watering schedule, keep the windows open and the house cool, I am about to reprogram the sprinklers to go off at a time when Seb is fast asleep. Meanwhile, we are patient that we’ll soon have a chance to explore potential long-term solutions to help Seb increase his tolerance for treble.

So many interventions are available for toddlers who’ve been diagnosed with ASD, the search for appropriate treatments can be baffling. My wife and I struggle to find appropriate sensory integration therapy, otherwise known as Occupational Therapy (OT), for our son. We sort through services available from public and private agencies. We find the right therapist by calling and interviewing them. Sometimes we need to pay for a trial evaluation. If we think we have a match, then we scramble for funding for frequent sessions, which might include a necessity to endure a grueling 45-day process to obtain pre-approval through our health insurance. Moreover, we know not all interventions are created equal.

Seb is slowly learning to embrace the sounds of life. At the History of Music Museum in Carlsbad, for the first time ever, he picked up the drumsticks.

Shopping for therapies is not like sampling desserts at the end of the frozen foods aisle of Costco. We cannot take one home, try it out, and if we don’t like it, return to Costco the next day to sample another. True, a single session with a therapist might tell us if we’ve bitten into something nasty.

Then again, a single session will not tell us if we have struck it rich and found an effective treatment. Therapies must be explored and tried out over the course of a month or more. Sometimes, we need to put our son on a wait-list that can take more than six months before an evaluation may even be made. Other times, the benefits of a particular therapy are not revealed for as long as a year. For instance, successful parents of ASD kids tell us that hyperbaric oxygen therapy might require almost a year of sessions before a breakthrough occurs. After a lot of time, patience and many payments to the health care provider, they finally experience results.

With various types of sensory integration therapy available, a kid with sensory dysfunction might need one or more of them, depending on his needs and the results of evaluations. Some are more effective for kids on one end of the spectrum, and less effective for those on the other. Some good for small kids, others perfect for big ones. Some more effective for your kid, less effective for mine. Fortunately, a wide range of intensities for sensory integration therapy exist to correct specific deficits in sensory processing.

Sensory Integration Therapies

Here is my brief description of sensory integration therapies that either have worked for our kid or we would like to try in the future:

Fast Forword: Fast Forword is a scientifically designed series of computer-based games that aid a child to process sounds, specifically those associated with language and communication. The program is typically administered by a speech pathologist over the summer, every day for about an hour. If playing computer games on an iMac were not exciting enough, as an incentive to play the games, the administrator of the program Seb took, Wings Speech and Lanugage Center, implemented a token economy. Seb saved his tokens and was rewarded with a small prize at the end of each week.

In one game, a child learns to listen and recognize all of the sounds of a single word. This game has a tic-tac-toe grid of the same drab, blobby shape, for a total of nine blobs. Obviously, the grid is designed to facilitate the player to focus on sounds, rather than on graphic presentations. The game begins by sounding a control word, a word that must be recognized to score points. Our son listens with headphones to the stretched control word. The software stretches and thereby lengthens the word’s sounds. Then each of the nine shapes sounds either the control word or a similarly sounding word. When Seb recognizes the word, he clicks the mouse to acknowledge and scores points. The points measure his progress and help him attain rewards.

Seb and Ashley make monkey bars out of the playground equipment. The goal of sensory integration therapy is to help Seb turn the world into his own personal jungle.

Big Fun Gymnastics: Big Fun Gymnastics is a provider of high-intensity sensory integration therapy. This therapy is administered in professional Olympic quality gymnasiums around the Los Angeles area and Orange County. The therapy incorporates competition-scale gymnastics equipment into exercises. The therapist utilizes balance beams, trampolines, parallel bars and gigantic foam shapes to build obstacle courses intended to challenge a kid with ASD. By training in the gym, our son developed motor planning skills by working through relatively complicated courses. Seb also demonstrated his rotational tolerance by sitting strapped into a swing and spinning like a top for several minutes. Once the therapist stopped the swing from spinning, Seb hopped down and proceeded to run in a straight line across the mat. This intensive sensory integration therapy helped Seb to develop a working memory, which is required to successfully approach and carry out novel, complex and multi-step procedures and routines.

Karate for All: Seb was recommended for this by his pediatric neurologist. This is a blend of martial art and occupational therapy that combines for an intensive sensory integration therapy. The chops, kicks, rolls, hops and blood-curdling Kiai of this martial art would certainly provide Seb with the kind of stimulation he naturally seeks. The discipline of this sport might help him with his focus. A group class might satisfy a need for our son to participate in community based activities, but individual classes are also available. Karate for All has two locations, one in Tustin and the other in Mission Viejo. If we were residing in any city in Orange County, we would be taking our son to Karate For All to give it a good try.

A Sensory Diet: A promise often made by school occupational therapists and teachers is that an appropriate sensory diet will be implemented in school to help kids with sensory processing dysfunction. A symptom of sensory dysfunction is a short attention span–really short, like, at times, a couple of seconds. Affected kids are easily distracted in a typical classroom. A sensory diet enables the kid to function in a learning environment without being distracted by the multitude of sights and sounds. It helps with reading, listening and otherwise sitting still and following directions in the classroom.

A typical sensory diet includes simple fidget toys that are handed to kids whenever they appear to be ready to bounce around the room. An example of a fidget toy is a balloon filled with sand. Squeezing it is supposed to calm the kid down. As a dad, I do not see a lot of value in fidget toys. While our son was in preschool, we requested that the occupational therapist place a small trampoline in the classroom. Whenever the teacher noticed Seb was walking on his tip-toes, she would encourage him to jump for a few moments and self-medicate with the pressure he was seeking on his lower extremities.

Seb and his pal, Shane, share jokes at the farm fest. Seb was known among his peers for coloring well outside the lines.

Our son had been picking his nose at school and experiencing several bouts of self-induced nose bleeds. These incidents were documented in a communications notebook that we keep for Seb, in which his teacher and all his therapists write highlights of the day. Aside from nosebleeds, other highlights have included fist fights, biting incidents, and benign trampoline exercises. After several problems with our son’s sensory integration in his Kindergarten class, an occupational therapist at one of Seb’s schools implemented what is known as a Drive Thru Menu program.

The Drive Thru Menu program is supposed to teach kids to become aware of the variance of their activity levels in class and regulate their behavior at school. As part of the program, kids are made aware of their bodies. Activity levels and moods are identified in stages as engine levels. If a kid is jumpy, his engine level is high. If a kid is in a daze, his engine level is low. Seb and his classmates were encouraged to review the Drive Thru Menu throughout the day and find ways to recognize and regulate their engine levels. It seems that the Drive Thru Menu program is tailored to the needs of the occupational therapist to efficiently manage a multitude of young children in the classroom without spending more than a few minutes in it.

Surfer’s Healing is probably not for everyone, but it’s one I’d like my son to try. The Surfer’s Healing is a therapy which combines a long board, swell waves and kids with sensory overload. The Surfer’s Healing includes an introduction to the calming power of the ocean, one-on-one surfing lessons, and some excitement for kids with sensory dysfunction. Like most kids, Seb loves the sand. He loves the ocean, and he loves to swim. Since we live within minutes of a few of the world’s renowned beaches: Silver Strand of Coronado, Moonlight Beach of Encinitas, and La Jolla Shores, we are destined to step onto a surfboard and embrace the waves. The Surfer’s Healing schedules multiple destinations throughout the year. Dude, camps fill up quick, so it’s best to sign up as soon as they are announced.

Someday He’ll Be a Hero

It takes a courageous soul and a true downhill specialist to attempt a double diamond run in a blizzard. And only the most expert of sailors would take out a small craft under the warning flag and sail wing-on-wing. As for climbing up to the Everest base camp in a pair of flip-flops: leave that to anyone born in an afternoon’s shadow of Annapurna. And, by the way, parents of autistic kids are of a different breed of parent, though not quite gifted as you are welcome to think.

No more or less skilled than those of typical children, indeed, parents of autistic kids are like school crossing guards assigned to monitor the security of Fort Knox. We are the veritable employees of McDonald’s placed in charge of establishing a nutritional system and meal plan for the United States of America’s Olympic Rowing Team. Yes, we are like high school graduates sitting for a bar exam. Let me be clear, although my autistic child has special needs that I ought to address, my parental super powers are not superior to those of any parent of a typical kid.

Obviously, I wish I had super powers. Autistic kids are not easy kids to raise. Although an ASD kid may be gifted with early reading skills as he enters Kindergarten, he might also retain the emotional maturity of a two-year-old through the end of first grade, tearing, screaming and crying his way through the days. And he may alienate his peers with disturbing or repetitive behaviors, like, and for no apparent reason, slamming his own head into the wall over and over again. While our son’s classmates engage each other in pretend play and sports activities on the playground, he can be frequently found to be spinning himself in circles. The thing about Seb is that he spins around and around and around, but he never gets dizzy. He just keeps spinning, and I wonder, could this be a talent?

To raise a child with autism certainly requires a level of intervention that most parents simply do not anticipate that they can easily muster. It’s doable, but with ASD, there is no wait-and-see. We do not endure tantrums, continue to change diapers and foster our child’s obsession with spinning things beyond age 5 and otherwise do nothing. If we do not act while our kids are young, they will simply fall further behind and then perhaps require even more special attention. Actually, there is so much more we can do right here, right now.

If I could have one super power, I would want to be able to be everywhere at once. So that no matter where I had to be, I could also be on the playground with my son encouraging him to stop spinning and make some friends. Such persistent qualities as these, the delay in socio-emotional maturity and the odd repetitive behaviors, keep ASD kids from advancing. If they hit them at all, they reach their organic development milestones late. For now, I am simply trying my best to help my kid improve, and it seems that I will have to try just a little bit harder.

Playing with Words

A couple of years ago, Seb, our 5-year-old, was diagnosed with the Autism Spectrum Disorder (ASD). Elia and I were deeply affected by this news, yet we were not quite caught off guard. Although he had been meeting with many of the expected milestones of his infancy, he had gradually regressed, and almost all of those milestones were seemingly forgotten or, perhaps, abandoned. Before he lost his speaking skill, his final words were mama and papa. We had been noticing other signs a few months prior: intense focus on inanimate objects, lack of speech, and extreme separation anxiety during preschool, to name a few. The flapping of his hands at the wrist was his typical emotional response to a wide range situations.

Throughout the past two years, Seb has endured a bevy of therapists, more than I think any child should ever have to meet. He was assessed by several doctors and professionals who set to work on lifting him out of his early childhood depression. Funded in part by insurance, in part by California Department of Disabilities, in part by the California Department of Education, and the rest out of pocket, he has undergone Floortime, Applied Behavioral Analysis, Occupational Therapy and Speech Therapy. Fortunately, he is a quick study and has benefited tremendously.

Seb recovers after a trek around the La Jolla UTC ice skating rink.

In just a few months, Seb went from speaking no words to reading and spelling, and at the time he was barely three years old. Over the past two years, he has made dramatic improvements in so many aspects of his life that, unless you were acutely aware of his history and the telltale manifestations of ASD, you might think Seb is a typical kid–a bit quirky, but, for the most part, typical. Look at him: you have to admit, he is a good looking kid. I mean, you might prefer his father’s green eyes to the dark brown color he shares with his mom, but he looks fine. And with a couple more years of regular, intensive therapy, he will be fine and, hopefully, low-maintenance.

We are the Champions

Elia and I are responsible and in charge of his progression. We let the therapists do their jobs and work their magic, but before we go home, we listen to them tell us how we can reinforce the skills he is picking up. We read through social stories to help him overcome his ritual anxiety. We walk him through morning and nightly check-lists to enable self-care, in which he is taking pride. His ability to speak and communicate has developed so elaborately that we enjoy helping him and seeing him improve. While Seb has worked hard, we have also tried very hard to encourage him to continue with his therapy. We make the work fun by playing games. Because Seb is astutely aware of any abnormality in his environment, we try to exploit this talent as often as we can, to foster creativity and challenge imagination. The games help draw out his focus on his own inner world into a friendly conversation.

Here are a few examples of the games we play:

• One of the first games we learned to play was to leave out a keyword in a sentence or song. For instance, when taking a bath, I used to tell him to get out of the bathtub by singing Bob Marley’s Get Up, Stand Up. I sang it every night, and eventually Seb learned the lyrics and could sing it with me. But instead of singing it together, I would sing all of one line and leave out the final word: “Get up, stand up, stand up for your … “, and Seb would fill in the blank: “Right”. “Get up, stand up, and you don’t give up the … “, and Seb would sing: “Fight”, and we’d follow it up with the mock chord strike.

• Our favorite word game involves speaking common phrases or having typical conversations with him. In one iteration of the word game, we replace keywords with quasi-homonyms. For example, sometimes when prompting him to begin a task, chore or routine, we might say, “Ready, set, go!” But in our word game you can hear the similar cadence as we replace the word set with the word Seb: “Ready, Seb, go!” When Seb hears this and sees our feigned urgency, he laughs and asserts a correction, “No, not ready, Seb, go. Ready, set, go!”

• Another iteration of our word game involves replacing a normal direct object with another funny one. As in, when we are eating chicken nuggets, we might say, “Okay, Seb, are you ready to eat chicken plates?” Of course, no, he is not going to eat the chicken plates. “How about the chicken pancakes?” No, not the chicken pancakes. “Then how about the chicken fish sticks?” No, not the chicken fish sticks. Seb’s ready to eat the chicken nuggets.

• And in yet another musical iteration of our word game, we might change a key word in a familiar song, like We Are the Champions. Except, in our song, we change the We to Seb, as in: “Seb is the champion, my friends. He’ll keep on fighting ’til the end. Seb is the champion. Seb is the champion. No time for losers ’cause Seb is the champion of the world.”

We enjoy playing together and laughing about silly things, as we play and mess around with common phrases and songs. These simple games help Seb, like any kid, listen to every word we are saying, utilize his ability to recognize the abnormality, and enjoy the interaction.

Millie sees her Big Bro-tector and smiles with adoration.

Update from the Baby Front

Baby Amelia Sophie, or Millie, as I am liking to call her, is growing bigger and bigger–gracefully, every day. She is eating, smiling and cooing. Her hair, a lightish, blondish color, is growing out now in furry, fuzzy tufts. One of her favorite activities is to lay in her crib gazing at the lion-star-swirl-pony mobile that her Grandpa got her. Millie loves to be held and, in fact, according to Elia, demands it 24-7. Although we are struggling to enjoy a complete night’s rest, all is well on the baby front.

Have you ever been to a Potty Party?

Elia and I like to have fun, too, but a Potty Party is about as fun as it sounds. Yes, you are right to be curious about what a Potty Party is, but first what a Potty Party is not. A Potty Party is not one of those morning-after-beer-before-liquor rituals. Nor is it an odd, risque fetish. And it is also not a game played by contestants wearing adult diapers. In fact, a Potty Party is actually an effective toilet training technique for troublesome toddlers who refuse to do the deed standing proper before the throne with the lid up–if your toddler happens to be a boy, that is.

My childless friends, now you may return to your upper tier, kick back and, with your perma-smiles, enjoy the comfort of your abode and all of its unbroken furniture. Your stream-lined adventures shall continue toward an ever unfolding rainbow-colored horizon, while we parents bear our toilet-training burden before the dull, grey backdrop on the inside of a damp, public restroom stall.

We enjoy a sunset respite in Carlsbad as we prepare for next weekend's Potty Party.

On Holding It

New parents, we understand if you’re at your wits’ end with potty training, especially if your son or daughter is a holder. Pee-pee cannot be squeezed out of holders. They can and will hold their pee-pee, no matter how much discomfort it causes them and everyone else involved, until it’s time to take a bath. As parents of a holder, potty training has been one of the hardest tasks of our parenting experience.

When our son turned four, he refused to take typical developmental potty-training steps. Instead, he preferred going in the bath tub. While on errands with Elia, though he filled up on bottles of water and sucked juice boxes dry, he would not empty himself into a public toilet. Elia utilized the tub technique just so he could continue his day without bursting. During scheduled stops by the house, Elia dunked him in the tub, where he could decompress.

After a few months of this, we decided on a new tact in potty training. This effort was exhausting, different from any that we know are typical of potty training exercises, like, for example, using Cheerio and candy rewards, floating toilet targets, special prize incentives, and plain, old-fashioned guilt-tripping. Once we had tried and failed with all of these motivational tactics, we understood that extreme actions would be necessary.

Seb is lucky to have his own bathroom, where he could start out peeing almost anywhere without regard to anyone. To potty train him, we set a simple goal for him to relieve himself in there, approximately 75-25 potty in the bowl. We set off on helping him accomplish this goal by scheduling a Saturday morning “Potty Party” (also known as a bathroom lock-in).

What is a Potty Party?

A Potty Party is a party to celebrate a kind of toilet christening. It takes place entirely within the bathroom. For Seb’s Potty Party, Elia went completely over-the-top and decorated the bathroom with $0.99 store streamers and decorations. We set up a play table in the bathroom with tiny chairs, and had a cupcake ready with an unlit candle for the moment the pee-pee hit the bowl. Then, Saturday morning, we began the celebration.

Do a Little Dance

Elia and I alternated, staying with Seb and pointing him to the toilet. All day on Saturday, sitting on tiny chairs in the bathroom, on our knees hard against the smelly tile, speaking softly, then yelling, then using the silent treatment, then nothing. Seb was there with us, acknowledged our deep concern, but refused to go. And, you know, during this time, Seb was not simply saying quietly, “I don’t want to.” He was dancing, screaming, crying tears, pointing us out the door and making it very difficult for his parents. And, alas, ten hours later, Seb relieved himself in the tub.

Still, we stuck to the goal. The next day, same effort, much less enthusiasm, Elia and I skipped comforting Sunday activities and devoted it to potty training. Again, we alternated, for twelve hours, taking short breaks for food and water, waiting for him to go, but Seb would not. Elia and I, heartier and with more stamina, were relentless. We were determined to wear him down. As far as we were concerned, Seb did not need a bath tonight.

Eventually, after nursing a liter of water, he really had to go, and we wore him out. Seb finally tired of holding. Standing before the toilet, he let out a little tinkle. At that moment, we cheered and, of course, acted as if he was finally doing it. The drama intensified, and little by little, he did it. From that day, with continuing support, he would go in his toilet. Along with that, we tried to reinforce his habit by giving him a preferred toy every time. And so we enjoyed our success for the next few months.

Seb catches his breath for his next potty dance.

The Hangover

It had been about five months since that tough weekend. Seb went in his designated bowl, but nowhere else. Elia and I discussed Seb’s progress, and our shared concern prompted us to re-double our efforts to help our son go pee-pee in a different potty. Since we also have a guest bathroom in our place, this served as the different potty. One weekend, through four hours straight of tears, gentle encouragement, restrained anger, frustration, and staying with him in the bathroom, he held it. Elia gave up after just an hour, and then I took over. Torture, interrogation, pain, water boarding, were all images that came to mind as I sat on a tiny chair nearby waiting. And there went a cherished day of rest.

After a prolonged silent treatment and hours of painful holding, he finally let out a tiny squirt. He pointed to some drops on the rim and tried to convince me that he had done it. I encouraged him to go ahead and let it all out, and little by little, he did. Later that weekend, he made his fifth trip to the different toilet and eventually championed the bowls of public restrooms in Target and Toys R Us, letting it out little by little. In one final push, we taught him to let it all out in a single flowing stream. He eventually conquered toilet in the public Kindergarten.

Seb anxiously awaits his chance to exit the kiddie bathroom.

Celebrate and Give Thanks

We are grateful that the bathroom potty party lock-in worked for Seb. Each child has a different story, of course, but our opinion is that the longer you wait with a holder, the harder it gets to potty train. Nonetheless, our short journey to the end of this final episode was really nothing to look forward to undertaking.

In the Spectrum

You might have heard that our son, Seb, has been diagnosed with the Autism Spectrum Disorder. Still, you wonder, how can it be that a normal-looking, cheerful and otherwise silly kid could be considered autistic? What makes Seb autistic? I mean, in most appearances, he seems like a normal boy.

Well, friends, let me explain what makes Seb autistic and, therefore, so different from other kids. The following is a partial list intended to shed some light on Seb’s autism. As a unique, special kid, who happens to have been given a diagnosis of autism, Seb is:

• Partial to a limited variety of food: mac ‘n’ cheese, veggie lasagna, and chicken nuggets;
• Obsessed with wheels and other spinning things;
• Often found to be twirling himself in circles;
• Unable to point at anything with his finger;
• In possession of a perfect pitch;
• Able to sing in tune;
• Naturally gifted with echoalia;
• Intolerant of any interruption to his routine;
• Enraged by imperfection;
• Anxious and fearful in the observance of typical cultural rituals like changing calendars and the top of the hour;
• Overwhelmed in crowded rooms to the point of tears;
• Prone to inconsolable crying tears and runaway meltdowns;
• Unwilling to use the toilet like a normal person;
• Frightened by or unusually interested in harsh sounds, like automatic hand dryers and electric vacuum cleaners;
• Afraid of normal childhood activity, like petting dogs and riding on carousels;
• Extremely disappointed upon separation with friends;
• In denial of eye contact;
• Charming;
• Unable to sleep regularly and consistently;
• Lacking in attention to two- and three-step routines;
• Seeking self-stimulation in the forms of sound and light;
• Constantly seeking sensory input, like poking his eye with his finger until it turns red, picking his nose until it bleeds, biting his lip until it scars, hitting friends, running into people, flapping his hands about his wrists, and walking on his toes;
• Burdened with stereotypies, like hand flapping and grimacing;
• Unaware of his peers;
• Intensely focused on and quite comfortable with a monotonous activity;
• Referring to everyone, including himself, in the third person;
• Challenged to develop fine motor skills, like holding a pen and using scissors;
• Uncoordinated in his development of gross motor skills, like running and jumping;
• Taught otherwise naturally developing language skills, like pragmatics. For example, instead of saying that the water is cold, Seb used to say that the water is not hot;
• Easily distracted;
• Hyperlexic; and
• Quirky.

Actually, Seb’s autism is not half of what it used to be. The above list is cumulative but not necessarily current. Some of these behaviors have already been mitigated or overcome. Seb has even developed quite a sense of humor and a typical fondness for mischief. Yesterday, after coming inside from riding his scooter home from the park, Seb dropped his helmet in the middle of the tiled entryway floor. When I called him out and pointed at his helmet, he laughed with glee and proceeded to put it away.

Seb has made a lot of progress since his first visit to the pediatric neurologist a couple of years ago. With thanks to the understanding and recommendations of Dr. McIntosh, during the past two years, Seb has undergone more than 30 hours per week of intensive behavioral therapy. What other kids learn naturally on their own, Seb has been taught by a contingent of therapists mobilized to practice a battery of therapies, including occupational, speech, sensory integration, and auditory processing and applied behavioral analysis. With this very early intervention, we believe Seb is more likely to seem like a normal kid.