Sunday, November 30, 2014

Growing Up

Ben is focused intently on assembling his magnetic construction while lots of games go on around him on Thanksgiving day.  
Another Thanksgiving has come and gone.  For most of us, Thanksgiving is a time to reconnect with family and to reflect on the things that we are thankful for in our lives.  Since I live half a country away from most of my family, I don’t get to see them very often.  Twice a year we fly up to visit them, once for Thanksgiving and then once in the summer.  I am grateful for this time with my family, even though it passes by too quickly.
My husband and I have lived in Florida for 13 years now, but we grew up in Indiana.  In many ways, going back to Indiana feels like opening a time capsule.  As I look out the car window at the farmlands and the houses that flash by, it feels as if time stood still.   So many things around me look just as they did when I was a little girl.
 In other way, however, traveling back home makes me realize that time is
speeding by way too fast.
When I travel back to Indiana, I slow down long enough to realize something that I don’t always notice in my daily rush back home in Florida. 
My little boy is growing up.
It’s the little things that get me the most. 
Like the way he wears a backpack now at the airport and walks next to me, rather than riding in a stroller.  Come to think of it, I can’t remember the last time he rode in his stroller.
 Or the fact that he no longer counts as a small child when boarding the airplane, which means we can no longer board early.  And, rather than throw a fit about it, he waited calmly in line with the others because he is a “big boy”. 
Or the way he calls me Mom now, instead of Mommy. 
Or the way he watches out for me, like when he reached out to touch my arm to make sure I was okay when I got sent back to Start during a family game of Sorry.   
And let’s not forget that he washes his own hair.  In the shower.  By himself.
            Ben loves seeing his family, but big family gatherings are still hard for him, and Thanksgiving was the biggest get together of the trip.   The day was loaded with potential sensory triggers. 
A house that he’d never been to before filled with people he only sees a couple of times a year.  A meal filled with food he barely tolerates, and one food he loves (if prepared the way he likes).  Lots of action happening all at once, in a closely confined space.  All of these things could spell sensory overload.  Add this to the fact that there would be several young cousins and a couple dogs (which he’s so-so about) mingling about, and relatives who would be excited and clamoring to see him.
            Ben handled the day on his terms.  He excitedly staked a claim at the table closest to the door as soon as we arrived at the house.  Soon after, the meal was served, and, luckily his favorite food (turkey) was to his liking, and he ate a ton.  He even made polite “small talk” with the adults around him. 
            “Do you like the mashed potatoes?” my uncle asked.
            “A little bit,” he answered (even though he hadn’t eaten a bite).
            “So, what grade are you in?” my cousin asked him.
            “Who’s your teacher?”        
            “Mrs. H.”
            “Do you have any friends?”
            He answered everyone’s questions, and even though his answers were one word, he kept the conversation going.  He didn’t let it lag.
            After the meal, the family members congregated in the living room, visiting and catching up.  A few cousins started a card game at a nearby table.  As the noise level rose in the house, Ben’s activity level rose to match.  The louder the noise level of the room, the louder he became.  His facial expressions became more pronounced, his hand waving wilder, and his body movements more manic.  However, when he started to become overwhelmed, he pulled himself into a quiet room by himself to draw pictures and find his calm again. 
            Only once did he really lose control that Thanksgiving day.  My Dad and I saw it coming.  My aunt had pulled out a magnetic building set for him to play with.  It was the perfect toy for him and it captivated him for a long time.  He sat at the table, quietly concentrating on attaching the pieces together into an intricate array of shapes and designs.  It was when he tried to the design 3 dimensional that the frustration set in.  As he started stacking the sticks higher and higher, his elaborate construction collapsed around him.   The first time he merely gasped in exasperation.  The second time, as it fell, he tore his creation apart in frustration.  At that point, I calmly suggested that it might be time to try something new, but he was having none of it.  He had a vision in his mind of how this thing should look, and he was going to see it through.  I knew that continuing with this project could only spell disaster, but I also knew that removing him from the room now would only cause a huge scene.  I also knew that he needed to learn to deal with frustration, so I let him go.  For about five minutes all seemed well.  He stacked the sticks higher and higher.  And then, the fateful moment came.  One stick too many, and the whole structure crumpled under the weight.  Ben was undone.  My Dad and I worked to guide him out of the living room so that he could have a moment to regain his composure in privacy, but it was no small feat pulling him away from his toy.  After several moments of loud, angry tears (and one Oreo cookie dessert later), all was right in the world again.
            But, this story isn’t about Ben melting down.  The wonderful part of this was my family’s reaction to this tearful scene.  Not one of them gave me a sideways glance.  No one lectured me on my parenting skills or called Ben a spoiled brat.  Instead, they allowed Ben the dignity and space to regain his composure again.  Not long after, everyone was gathering their coats and saying goodbye.  We had to wait until a few of our relatives went ahead since our car was parked behind.  Again, Ben started to become agitated, but no one said anything.  Everyone understood.  Ben was able to give hugs and say goodbyes, and hold the memory of a good day where he visited family, ate turkey, and had yummy desserts.
            Most of my relatives only get to see Ben twice a year at Thanksgiving and at the 4th of July.  I know that the majority of their memories of him come from these family gatherings, which, due to the sensory overload and heavy social expectations, are not always his best moments.  Yet still, they complimented me on the growth that Ben has made in his conversations, his language abilities, and his overall maturity.  They recognized the growth he had made and made an effort to get to know him on his terms. 
It is human nature to fear what we do not understand, but my family has made an effort to understand Ben’s autism.  They have shown him nothing but love and support.   I am grateful for this, but I hope for more.  I hope that one day, society will have a better understanding of autism.  As more people become educated and aware, whether it’s because of a loved one like Ben or because of someone they have met along the way, autism will seem a lot less scary.   I hope that more people will learn to love and accept those around them and learn give others the benefit of the doubt when they see someone struggling or having a hard time.  A little compassion goes a long way.

Ben still has a lot of growing up to do, but the good news is that he has a tribe rallied around him.  They may not live next door, but they have his back every time.

Sunday, November 16, 2014

Waiting Is The Hardest Part

Being the first one in line can have its benefits.  Ben got to take part in opening the Disney store since we were the first ones there.

Long lines
Wordy speeches
Waiting for a turn

For most of us, these things can cause feelings ranging from mild irritation to downright annoyance and frustration.  However, for my son Ben, the items listed above cause him major struggles every day. 

Being patient has always been especially challenging for Ben.   Now, I know that all young children struggle with patience.  Waiting is hard to everyone, especially in a society that has become accustomed to instant gratification.  However, those on the autism spectrum have to contend with additional layers of challenge.  Autistic individuals tend to hyper-focus on an object of interest and also have a tendency to perseverate (talk or think about something over and over and over). 

The more Ben anticipates or wants something, the harder it is for him to wait, and the louder and more persistently he demands his desired object/event.

Exhibit A:  Ben loves going to OT, but it’s across town and unfortunately we sometimes run into traffic on the way.  As we get closer to the gym, as he calls it, if we run into a line of cars or are stopped at a red light, he’ll start yelling at the vehicles.  “You’ve just crossed the line!” he’ll shout at them.  Sometimes he’ll start pushing into the seat in front of him to try to physically move the car forward.  No matter how many times we’ve discussed being patient, taking deep breaths, he still works himself into these states on an all-too-frequent basis.  Thankfully, some days the traffic doesn’t faze him at all.  But other days, particularly if he’s feeling extra tired or if the wind isn't blowing the right way, traffic becomes the stuff of nightmares.

Exhibit B:  Waiting for a coveted prize or possession is very, very hard for Ben.  One shining example of this happened this past Saturday.  Ben’s soccer team played in their final “championship” game.  I use the world championship loosely because they played the exact team that they have played all season on the exact same field.  Even so, Ben knew this game was special.  This is his second soccer season, and he knew that after the game he would be getting a trophy.  Now I know that children should enjoy playing sports for the love of the game and not be so materialistic.  I know that too many extrinsic rewards aren’t good, as we should teach intrinsic motivation.  But, Ben has been talking about that soccer trophy ever since soccer began.  After each game, he would count how many games were left until he would get his trophy.  After each game, he would tell us how hard he played, and how well he listened to coach, all in the name of earning that trophy.  So, this Saturday, when the game finally ended, Ben made a direct beeline for the trophy table and stood as closely as he could to the gleaming plastic soccer balls on pedestals.  To Ben’s credit, he did not grab the nearest trophy off the table (as he did last season) but held his outstretched hand in front of them, fingers hovering in the air while his coach spoke to the parents about the season.  Then, coach called each player up one by one, starting with the player farthest from Ben.  When Ben realized his name was not the first called, he let out a loud, exasperated shriek that got more and more frenzied with each passing player’s name.  Finally, the head lady whispered to coach to go ahead and give Ben his trophy, to which Ben let out a loud, jubilant shriek of joy, victoriously pumping the air and clutching the trophy with pure rapture. 

I want my son to learn patience.  I know it is a life skill, but I also recognize that, as with so many things in life, there is a learning progression.  I can’t snap Ben into a sudden zen-like state where he arrives at a place of patience overnight.  It is a process that takes time and repeated exposures to trying situations.  We try to teach Ben techniques to help make the waiting process more visual and concrete for him.  For example, we count down the days to anticipated events like flying to Indiana or Christmas with countdown chains. Every morning he gets to cut one piece of the chain until the day arrives.  This time we haven’t even needed the chain as we prepare for our Thanksgiving trip to Indiana.  To help Ben handle waiting for a big event like getting the soccer trophy, we tell very specific social stories so he knows exactly what will happen.  Before the trophy ceremony, I took him aside and explained that first, coach would talk and everyone would listen quietly.  Then, coach would call each player’s name, and when he called Ben’s name, he would get to come up and get the trophy.  I’ve found that social stories don’t completely resolve Ben’s impatience, but they do make the waiting tolerable because he knows exactly what to expect. 

Another thing that Ben has a hard time waiting for is a toy that he really, really wants.  Going to Target or Toys R Us used to be nearly impossible, because if Ben saw an item he wanted and he couldn’t have it, a meltdown was pretty much a given.  He simply did not understand the concept of waiting for that gratification.  To help with this, we introduced the concept of a wish list.  If Ben saw something he really, really wanted, we would take a picture of it and add it to his wish list.  We’d put the pictures on the refrigerator, and as he’d acquire the items at a later time, he could check the item off his wish list.  We have Christmas videos where Ben opens a present and immediately runs to the refrigerator, pen in hand, to check the item off the wish list before proceeding to open the next present.  Now that he’s older, he barely uses his wish list anymore because he doesn’t need that intervention.  Instead he has an allowance for feeding the dogs and doing chores, and he’s learning to save his money towards buying the things he wants. 

Unfortunately, life doesn’t always go exactly as planned.  There are traffic jams on the interstate and rainy days that cause soccer games to be cancelled.  There are Christmases and birthdays with presents from relatives that are not exactly what was on that wish list.  As hard as these moments can be to live through, they are necessary also, because they provide an opportunity to practice flexibility. 

To a casual observer who is witnessing these behaviors in public, it is easy to label the child as a “spoiled brat.”  Sadly, not everyone in society gets it.  There are some that are quick to judge without fully understanding the situation. 

I read a story recently about a man standing in line at McDonalds in front of a little boy and his mother.  While the little boy waited, he repeated over and over to his mom that he wanted an apple pie.  This verbal perseveration on this object of intense desire (the coveted apple pie) coupled with some other behaviors indicated that this child could very likely be on the autism spectrum.   Sadly, when it was the man’s turn to order, he bought every single apple pie and then promptly threw them all in the trash, saying that little boy needed to learn a lesson and that spoiled brats don’t always get what they want, especially brats that drive everyone crazy. 

Another example is of a female blogger who goes by the name of Smockity Frocks.  Smockity wrote  a story on her blog page about a little girl and her grandmother who were waiting for their turn to use the computer at the local library while Smockity’s little girl had her computer time.  Smockity mockingly described how the little girl repeatedly asked her grandmother how much longer until her turn on the computer.  The grandmother soothed the little girl, telling her, “Not much longer, sweetie.”  In her blog post, Smockity mocked the girl’s hand flaps, saying she looked like a little bird ready to take flight and clearly missing the signs of a child on the spectrum.  Smockity went on to praise her own self-restraint at not going off on this grandmother for praising the little girl for being patient, which in Smockity’s mind, she clearly wasn’t.  

Sadly, many people are quick to judge the behaviors that they see in other people’s children without understanding the entire situation.  Patience is a hard skill for all children to learn, but it’s especially challenging for those on the spectrum.  So, if you see a child out in the world who’s grabbing for that soccer trophy or repeatedly asking for that apple pie, before assuming the child is spoiled and hasn’t been taught proper manners, pause for a moment before passing judgment.  A little kindness and self-restraint goes a long way.

Tuesday, November 11, 2014

Little Things #SensoryHop

Ben and his Papa riding the golf cart during a camping trip this summer.  
"Enjoy the little things in life...for one day you'll look back and realize they were the big things."
-Robert Brauit

November is the month where we take the time to reflect on what makes us thankful.  I’m trying to embrace this spirit of thankfulness all year, not just in November, but this is easier said than done.  It is easy to become caught up in negativity and focus on the many things that make life just plain hard.  Even so, there are those shining moments in our day, some of them so small that they might pass us by if we’re not taking the time to notice.  These moments serve as reminders of all that we have to be thankful for.

Last Monday I took Ben to his occupational therapy class, as I have on pretty much every Monday afternoon for the past year and half.  Afternoon OT sessions twice a week became my new normal after Ben’s autism diagnosis.  Ben’s therapy is on the other side of town, and it takes us a good half hour to get there from his school, so depending on traffic, we either arrive slightly early, right on time, or slightly late.  Ben loves going to “the gym” as he calls it, and fine motor days are one of his favorites.  He can hardly wait to head back into the gym, filled with all of his favorite sensory goodies, from the trampoline to the crash mats, and multiple swings and a ball pit. 

When we arrive early it usually takes all of my powers of persuasion to convince him to wait quietly in the lobby until the other group is finished.  If I turn my back for a split second, Ben bolts into the gym, announcing loudly, “Here I am!!” and begins racing from one piece of equipment to the next.  Thankfully, the staff is quite familiar with Ben and his needs, and they graciously accommodate him.

Today we arrived the dreaded five minutes early.  I braced myself for a torturous five minutes of placating him until the previous group finished their session.  Surprisingly, my fears were unwarranted.  After letting Ben know that we were early, he calmly removed his shoes, put them in the cubby, and sat down on the waiting room floor and joined two other little boys in a Lego building project.  His little body showed none of its usual signs of restless energy and agitation at being forced to wait for a hugely preferred activity.  

He sat and waited.

No stream of endless questions, such as “Why we’re early?”  No bolting into the gym.  Nothing but calm play.  At one point he looked up as he heard the “goodbye song” playing in the gym, a sign that the current class was winding down.  “My turn soon,” he said, a simple statement of fact, and then returned to his Legos.

A few minutes later, when his teacher came to tell the boys it was their turn, he jumped up and quickly joined the group.  I watched him from the parent viewing area as he completed the obstacle course- pulling his body through the squeeze machine that he used to avoid, winding through cones that used to give him such difficulty.  In fact, a year ago, he would have spent the first five minutes of class running circles around the perimeter of the gym before he would have been ready to join the group at all.

As I watched his OT session, waves of gratitude filled my heart as I realized how thankful I am. 

Thankful for the team of people who have worked so hard with Ben to get him to the place he is today. 

Thankful for OT staff at this gym who have patiently worked with him since the early days following his diagnosis, when I had no clue what sensory diet or self-regulation meant. 

Thankful for his speech and language teachers who are helping him to develop the tools to communicate effectively and engage in appropriate social interaction.  Because of their efforts I can now have a back and forth conversation with my son, and he is beginning to play with others on the playground instead of just wandering aimlessly at recess.  

Thankful for Ben's kindergarten teacher who challenges his mind while caring for his tender heart. Thankful that she structures her class to allow plenty of opportunities for movement so that, even at the end of the day, he is still calm and regulated enough to take part in therapy.

Better yet, I’m thankful for all of the teachers who work with Ben at school, who smile and greet him every day, and who take the time to know him and care about him.

I am thankful for his friends who save him a spot at the table each morning before school and say,
“Hey, Ben, we’ve got the Legos ready.  Want to play?”

I am thankful for my family who see a little boy and not a disability and who love him unconditionally.  I don’t know what I would do without their love and support.

I am thankful for so many individuals who have played a part in helping Ben to grow into the person who he is today. 

Most of all, though, I am thankful for Ben.  Thankful for the millions of little ways that he enriches my life.  I'm thankful for his kindness and unwavering love.  And I’m thankful for the view he allows me of his world.  Ben has taught me lessons that I have applied time and again.  Lessons of tolerance, patience, and acceptance.   

We have a long way to go, and some days are better than others, but today I am thankful.  Thankful for the little things that are not so little after all.

Monday, November 3, 2014

Through the Tears

In this picture, Ben is warming up with his coach before the big game.  

            My little boy is sensitive and kind.  He is quick to love, but is also quick to have his feelings hurt.  I try to always speak to him in calm, gentle tones, but occasionally I slip and raise my voice. When this happens, he will literally crumble before my eyes.  “Sorry you yelled,” he’ll say as tears swim in his eyes. 
            Some days Ben’s tolerance level for life is much higher and very little will faze him.  But every so often he’ll have a day where he is just extra emotional.  Saturday was one of those days.  Maybe it’s because it was the day after Halloween and he was tired from all of the excitement (and sugar) from the night before.  Maybe it’s because one of the players on his soccer team was tormenting his teammates by hugging each one too tightly and generally causing mayhem.  Whatever the reason, Ben was having one of his “quick to cry” days. 
            I think we’ve all experienced the sensation of feeling the tears come on and trying to fight them back, but finally succumbing to our body’s intense need to let the emotions pour out.  As my high school English teacher used to say, "Our bodies betray us."  I remember certain moments as a child when sadness, anger, or frustration would overtake me and I would find myself in a state of tears, and, as much as I would try to stop their flow, to control my breathing, my body would rack with sobs, and the crying would have to run it's course.  As an adult, I am much better able to control my emotions, but there are still times when tears spring to the surface.  I truly believe that Ben hates crying, but his emotions are always right there, just under the surface.  Most days he can control them.  Some days he cannot.  I have written more about his intense emotions here.  On the days when the tears just have to come out, I try to remember how I felt as a child when my body was racked with emotion.  I try to remember and be there for him.
            Ben’s response to his emotions has changed over time.  When he was a baby, he would scream, seemingly for hours on end.  We called this his “red Ben” stage.  We often could not figure out the cause of his intense crying spurts, but I always got the sense that he was overwhelmed by his world.  He would screw his eyes shut so that he wouldn’t have to look at the world around him.  During this time, I would rock him, hold him tight, and soothe him until he would eventually calm down.  When he got a little older, as tears would pour down his face, he would name his emotion.  “I’m crying…” he would say, often sounding as surprised as we were at his quick change of emotion.  Now, often as he cries, he gives us a running dialogue through his tears of exactly why he is crying.  “I’m crying because I want my mommy and daddy…”  And, almost always, after his crying jag, he will apologize for his tears.

            And so it was during his soccer game on Saturday.  The team was standing on the field, waiting for the kickoff, and suddenly tears started pouring down Ben’s face.  This was the first time he had cried all season.  As the other team kicked the ball, players running around him, Ben stood in the middle of the field and continued to sob.  Finally, the coach let Ben run to us on the sidelines.  I pulled him on my lap, and, as the tears poured down his face, he breathed in deeply as we had practiced, in through his nose like he was smelling a flower, and out through his mouth to blow out the candle.  As we sat and watched his team chase the ball, slowly the tears subsided.  A minute later he looked up at me and simply said, “I love you Mommy,” And, with that, he jumped off my lap, ran on the field, back into the game.