Monday, June 23, 2014

The Broken Shell


Summertime in Florida would not be complete without trips to the ocean, and this summer we’re getting in our share of beach time.  These days, one of Ben’s favorite things to do at the beach is to collect shells.  Ben is, by nature, a collector, and the shoreline provides an endless (free!) supply of collection material.

From the moment that we arrive in the parking lot, Ben has his bucket ready, and he’s stooping down to pick shells practically from the moment he steps out of the car.  It’s as if he doesn’t want to miss any prospects or leave any behind. 

As we pick our way towards the water’s edge, he stops every few feet to plunk another one into his bucket as I prod him on. 

After scouting out a good spot in the sand, Ben waits impatiently while I set up camp, spray him down with sunscreen, and then he’s off racing towards the waves, bucket in hand.  He looks back to make sure I’m coming, and I know he’s ready for his beach walk.

We walk along quietly, taking our time as we search for our shells.  I carefully scrutinize each shell before selecting my favorites to keep.  I like the pinks and the blues, or the ones with the mother-of-pearl sheen.  Occasionally I’ll find an olive to add to the collection.  I keep my eyes peeled for a shark’s tooth, but I’ve yet to find one.

Ben, however, has a different approach to shell collection.

Monday, June 16, 2014

A Case for Bringing Back Summer

The following is an excerpt written by an autism mom named Kristine Barnett, from her book “The Spark”:

“For the past year and a half, every moment that Jake had been awake had been about autism:  drills and therapy and pattern recognition to work on his lowest skills.  In all of this, we had forgotten something vitally essential childhood.  Typical childhood experiences- like watching your cold fingers wrinkle up under a sprinkler on the first superhot day of the year- are important for everyone, not just typical kids.  Every family needs to have special traditions that celebrate who they are and what matters to them.  I knew from my own days growing up that such traditions don’t have to be a big deal to be meaningful.” 

As summer officially kicks off in full swing, children celebrate the end of school year and the beginning of long summer days filled with play and relaxation.  However, for children with autism, along with other children with disabilities or just struggling learners, school most likely will not end in the summer.  Many children will take part in Extended School Year summer programs geared towards helping them retain their academic skills and continue to develop their social skills.

While as an educator, I know the research about the “summer slide” better than most.  In case you haven’t heard of the term, the summer slide refers to the phenomenon in which students will lose academic ground over the summer and enter the next school year even further behind then when they left in May.  This is why many schools offer summer programs and services that are geared towards stopping this summer slide.  I believe that these programs have merit, and I support any parent who chooses to enroll their children.  However, I have chosen not to enroll Ben in these summer programs, and here’s why.

While I believe in high academic standards, I also equally believe that Ben needs time to be a kid.  The fact that he has autism does not make this need any less real. 

Ben deserves time to play on the beach, run through the sprinkler in our front lawn, throw water balloons, and paint at his art table for hours if he feels like it.  He deserves trips to the movie theater, to the pool with his friends, and outside to catch the ice cream truck as it slowly drives down our street.

I think it is easy to discount the importance of allowing a child with special needs unstructured time when the overpowering message is that every moment of therapy is vitally important.  And while it makes logical sense that filling every moment possible with targeted, systematic, therapeutic work will help to close the developmental gap, my gut tells me that sometimes we have to slow down in order to leap forward. 

Sunday, June 15, 2014

Lessons I Learned From Dad…

Ben and his Papa at one of their favorite places, the beach.

My dad may not be a tall man, but he is larger-than-life.  His laughter and smile can light up a room.  His boundless energy and zest for adventure allow him to run circles around much younger men (sometimes literally).  While I may not have inherited my dad’s adventurous spirit, there are many other parts of him that I see inside myself.

My dad is an explorer.  He cannot stay in one place for too long, so it’s only natural that our family traveled a lot (and we still do).  Because of this, I have always loved to visit new places.  Some people like to accumulate material items, but I prefer to save my money for family experiences that we will always remember.  I have passed this love of travel on to my son.  Children on the autism spectrum like routine and predictability in their lives, but Ben seems to make an exception when it comes to going to new places.  He is always up for an adventure, even if it’s going to a “new McDonalds”.  Every morning he asks, “What are we going to do today?”  He has flown airplanes since before he could crawl, so he has always known that new places hold excitement and, often, people he loves.

My dad is a very hard worker.  When I was a little girl, he supported our family with three jobs, which included washing windows.  Now he owns two businesses in two different cities.  I learned from this example and, as a result, I’ve never been afraid to roll up my sleeves and get to work.  I tackle new projects head-on, which includes helping find the best therapies and supports for my son.  When Ben was first diagnosed with autism, I spent very little time mourning the label.  Instead, I got busy researching and learning all that I could about how to help him.  Along with this, my dad knows how to have fun and enjoy life.  He is a loving and giving person who always puts God first, and I aspire to approach all people and situations with that same loving spirit.

Finally, my dad, along with my mom, taught me what it means to be a good spouse and parent.  My parents aren’t perfect, but as I watched their marriage through childhood into adulthood, I witnessed two people who were committed to loving and caring for each other.  My parents always showed their affection in front of my brother and me, and even though it embarrassed us at the time, we saw two parents who still loved each other very much.  They made decisions together, and even though they would sometimes disagree, they would always work it through.  My dad has always been a strong supporter in my life.  I am the proudest when I know that I have made him proud.  And I have never seen him happier than he has been these past five years as Ben’s Papa.  Ben’s diagnosis didn’t change him in my Dad’s eyes at all. 

Ben is blessed to have a father and two grandfathers who love him very much. He is surrounded with kind and loving men who always make time to play trains, fish, camp, take him to the park, or do whatever he would like to do.  Who can ask for more than that? 

Tuesday, June 10, 2014

Viewing the World Through Sensory Lenses

“For most of us, the delicate interaction between the brain and body known as sensory integration is nothing short of marvelous.  It allows us to move purposefully through the world without being driven to distraction by the cacophony of sensory experience that bombards us each moment we are awake.”
 -“The Sensory Sensitive Child”

             Today we were once again at the pool, Ben’s new favorite hangout spot.  The pool was getting quite crowded on this Saturday afternoon, but Ben didn’t seem to mind.  He was happily floating on his new shark noodle in the shallow end of the water, when I noticed a mother and her young son entering on the steps.  I had seen this particular boy at the pool before, always sitting off to the side near the chairs while his siblings swam, splashed and had fun.  He had attracted my curiosity then because he hadn’t seemed the slightest bit interested in the water.  He seemed more than content to play with his dinosaurs the entire hour.  But today, he was glued to his mother’s hip, clinging onto her for dear life, as she determinedly plunged them both into the water.  And then the screams began.  The boy was clearly doing everything in his power to make it quite clear that he wanted nothing to do with the water.  I turned my attention back to Ben as the wails continued.  I politely ignored this for the next several minutes, but when the plaintive cries did not subside, curiosity got the better of me.  As Ben swam close to the mother and son, I gave the mom my most understanding smile and told her confidingly, “My son used to cry in the water, too.  He still hates to get his face wet.”  Her expression visibly changed to relief and she let out a huge exhale.
            “I just don’t understand it,” she gushed.  “His brother and sister swim like fish.  He’s almost three years old, and I can’t let him sit by the side of the pool forever.” 
            I hesitated, knowing it would sound like an odd question, but I plunged ahead anyway. “Can I ask you something?  Does he like to swing when you take him to the park?” 
            “Why, no, he doesn’t” she said with a look of utter disbelief.  “He never has liked swings.  How could you have possibly known that?” 
            “Well,” I said carefully, “It may be a sensory issue.  He may not like the sensation of floating and flying through the air, when his feet leave the ground.  I noticed he was much more comfortable on the steps where he feet touched the bottom and wasn’t crying nearly as hard.” 
            The more we talked, the more this Mom opened up.  I was happy that I was able to pass on a few ideas to her, because I know the feeling all too well.  I know how it feels to be baffled by your child’s behavior.  Watching her little boy in the pool reminded me of my early days with Ben.    
            Ben’s behavior was always somewhat of a mystery to me, even from the beginning.   I remember the day after Ben was born, he cried loudly and inconsolably for what seemed like hours.  I remember rocking him back and forth while wondering if I was ready to be a mother.  The nurses would whisk in and out of the room, showing me how to swaddle him and jiggle him in just the right way, which helped for a while, but soon enough, the crying would start again.  The first few months of Ben’s life passed in a hazy blur of rocking, swaddling, and cuddling him close.  I frantically searched the baby books for advice, and I reassured myself in the fact that all babies cry.  Still, I sensed that there was something I was missing.  Sometimes Ben would screw his little eyes closed, as if the outside world was just too much for him. 
            Fast forward to his third birthday.  By then, Ben loved Thomas the Train, as many little boys do at that age.  We decided to throw him a big party with all of his buddies from school.  We rented out the community clubhouse and carted all of his train toys into their great room.  We hung Thomas balloons from the ceiling, strung brightly colored streamers from the walls, and filled the room with loud, upbeat train music. Finally, the big moment arrived.  All his friends where there, ready to celebrate.  It was time for Ben to make his grand entrance.   I walked Ben into the room while everyone eagerly leaned in to catch his reaction, video cameras glued to his face to capture the moment.  We all watched in disbelief as he studied the room, his normally boisterous personality suddenly very subdued.  Then, he quietly snuck over into a corner, slumping down on his Thomas chair, as silent tears began to pour down his face.  My dad joked he was crying tears of happiness, but the worried feeling inside me grew. 
            Everyday tasks were often very difficult for Ben.  On nights when we had to wash his hair (a task I always gave to my husband because I just could not bear it), I feared the neighbors would think we were torturing our child because of the heart-wrenching screams.  “No hair!” he would beg nightly at bath time, for fear that this would be the night when we would force this upon him.  Most nights I would let him off the hook, because I could not handle the emotional toll of the ordeal.  The same held true for clipping his nails and cutting his hair.  I would watch the other children at the "Little Tykes" hair salon sitting so still for the stylist, while my child twisted his body like a contortionist in a heroic attempt to escape the race car chair.  I felt like an accomplice as I held his head in a deadlock so the stylist could finish the job.  We would bribe him with several lollipops to get through.  I would wonder why it always had to be such a battle.
            And then there was the time I had to take him to the eye doctor.  The doctor needed to dilate his eyes.  After pleading with him to open his eyes, just a little, I finally had to sit in the chair myself and restrain my little guy so the doctor could finish the job as he thrashed and screamed.  Weeks later, Ben would still talk about how Mommy held him tight at the doctor’s office, and the guilt inside me grew a little more.
            Mealtimes were especially challenging.  There were only certain foods that Ben would eat, and he wanted the same foods every single day.  Then, for no apparent reason, he would refuse to eat them anymore.  Like the day he stopped eating bananas, then mandarin oranges. My husband and I knew better than to make mealtime a battle, but I still felt like a horrible mother because there was little variety in his diet.  I had always sworn that my child would never know the taste of fast food, but McDonalds was slowly becoming the dinner of choice, especially on busy nights.  
            And then there was the way he would smell everything and everyone.  He was forever carrying around his favorite stuffed bear, holding its well-worn paw to his nose.  Anytime we would go somewhere new and different, he would loudly ask, “What’s that smell like?’  Sometimes he would walk up to strangers and sniff their clothes.  Odder still, at four years old, the teacher at school was reporting that he was putting everything in his mouth.   Things like Easter grass from the sensory bin.  Then, I watched one day during karate class as he bent down and licked the karate mat.  What was going on with my child?
            Luckily it was during this time when a colleague happened to be at a teacher training with me one afternoon, and as we were catching up, we were surprised to discover that we were both concerned about our sons, who are roughly the same age.  She shared with me that her son had started seeing an occupational therapist named Jen, and that this therapist was offering a free parent workshop if I wanted to come and learn more.  She said that Jen really “got” her kid.  Now, being in the school system, I’m familiar with OTs, but I had mostly thought of them as people who worked with kids who had physical disabilities or severe gross motor and fine motor issues.  With some trepidation, I decided to go check this place out.
            When I arrived at the sensory clinic, the woman behind the counter was barefoot and wore a tie-dyed shirt.  I quickly learned she was also the owner.  Jen immediately captivated me as she opened my mind to the sensory world.  I’ve always loved to learn new things, and for the next hour, I soaked up everything that I could.  This was the beginning of my journey into understanding sensory integration.
            I learned from Jen that we experience the world through our seven (yes seven) senses.  We all have sensory needs that are different for each person. Some people need their morning cup of coffee to get them going.  Some people need a shower in the morning to rejuvenate them at the beginning of their day.  Some need it completely quiet when they’re working, while others prefer background music.  Some, like me, don’t feel right if they don’t have “their” seat in the conference room or “their” exercise equipment at the gym.   However, most of us can manage our sensory needs without much issue.  Our brain blocks out the irrelevant sensory information before it ever reaches our awareness level, noises like the hum of the air conditioner or the cars driving by outside.  Without this “pruning” function of the brain, we would be incapable of getting through the day.  Our world would be too overwhelming, distracting, and we would cower and hide from it all. 
            For a child with sensory processing disorder, like my son, the pruning function isn’t working correctly, and things that we take for granted are extremely challenging for them.  Jen compares this sensory malfunction to a radio that either is playing to loudly or too softly.  Every sensation is amplified, from the buzzing of a light to the painfully scratchy sensation of a t-shirt tag to the noxious odor of someone’s fish sandwich at the next table over at the restaurant.  To complicate matters, everyone experiences sensory input in different ways.  The more Jen talked, the more the light bulbs flashed in my brain.  This is why Ben covers his ears every time the toilet flushes and why he hates to get his face wet in the shower.  I was hooked and eager to learn more. 
            Over time, I learned that my son is mainly a sensory seeker.  He craves sensory input.  This is why he runs his fingers alongside the walls in the hallway of school as his class walks.  This is why he loves the feeling of his whole body in the sand and the squishy feel of mud between his toes.  This is why he needs time every day, often multiple times a day, to swing, jump, and crash into mats.
           With Jen’s help, along with his OT at school, we created a sensory diet for Ben.  This is a daily plan that includes opportunities throughout the day to meet his sensory needs.   Here’s some examples of Ben's unique sensory makeup, as viewed through the lens of the seven senses: