Saturday, May 31, 2014

The Heart of a Meltdown

“Did you know that meltdowns are involuntary acts most often caused by overstimulation and are outside the control of the person in question?  Meltdowns should not be confused with tantrums, which are willful acts meant to manipulate.”  -Lost and Tired (

My son has a wonderful, sunny disposition.  He has a kind and caring heart.  He has an unadulterated joy that emanates from him as he dances through life.  He has a vivid imagination and he joyfully accepts the revolving role as the main character of his fantasy world every single day.  It is captivating to watch.  However, he also weathers many emotional storms that can quickly dampen that sunny personality.  Tears flow easily with Ben, often for seemingly no reason.  But, make no mistake, there is always a reason.  He cries when life becomes overwhelming.  He when cries too much is going on around him and he just can’t handle it any more.   He cries when plans change and things that he expected and needed to happen don’t happen.  Normally his tears come and go quickly.  Ben has learned to recognize his feelings.  When he starts to become sad or upset, he knows how take action and calm down. However, there are times when disappointment is too great, or when his sensory systems overwhelm him, and a meltdown occurs.  In those moments when my son’s body succumbs to his emotions, I try to do everything I can as a parent to help him.  I try to calm, distract, and soothe.  I give him a safe space to work through his feelings.  At the end of an episode, I am exhausted and relieved that the ordeal is over.  It is human nature to view the world through our own perspective, but the other day I had the rare opportunity to view the world through Ben’s.

Thursday, May 22, 2014

A Kindergarten Dream Come True

           Sending a child to kindergarten is a huge milestone, as any parent who's been there will tell you.  When the big day finally arrives, we snap pictures of our child in their brand new clothes, backpack in tow, as they stand with barely-contained excitement outside the classroom door.  Our heart tugs as they walk away from us through that classroom door, looking much too small to be sent off into this big and scary world. We hover a few extra minutes, peeking through the window, knowing that once we walk away we will have to admit to ourselves that our baby has just taken another yet step on the path to adulthood.   Leaving our child in that teacher’s hands for the first time is a really big deal. 

Monday, May 19, 2014

10 Ways I Parent Differently Because My Child Is Autistic

A few days ago, I was talking with a couple of colleagues at school.  One of them teaches a class with an autistic little girl, and she was thrilled because the girl actually came up to her and tattled on another child.  She was just so happy to see her engaging in conversation and speaking up for herself.  This led us into a conversation about how we approach autistic children differently from neurotypical children.  By the way, when I use the word neurotypical, this simply means people that are not on the autism spectrum.

This led my colleague to ask a question that I think many are wondering but are afraid to ask, “What is it like to raise an autistic child?” I thought I might try to answer her question here.  Please know that I can only speak for my own autism parenting experience, because each family has its own unique set of circumstances.  There is a saying in the autism community that if you have met one autistic person, you have met one autistic person.  I know that many children on the spectrum display much more severe behaviors than what we deal with on a daily basis. 

So, with that disclaimer, I give you…

10 Ways I Parent Differently Because My Child Is Autistic

  1)   I let my kid jump on the bed…
…or at least I did before we bought him a trampoline.  I learned when Ben was very young that he needs to move- all the time.  On this same vein, I never take away his physical outlets as a consequence.  Ben has sensory needs that need to be met.  If left unchecked (as in if he sits too long without a motion break), he can become overstimulated, anxious, or dysregulated, which can lead to intense emotions.  Jumping helps.  So does crashing into a mat.  So does swinging.  And yes, we have an indoor swing in the playroom for this very purpose.  Many neurotypical children enjoy swinging, jumping, and crashing.  For Ben, it is a necessary as eating, breathing, and sleeping. 

  2)   I pack him the same lunch every day
Yes, I want my child to have variety in his diet as much as the next parent, and we do encourage him to try new foods as much as possible.  However, there are only a limited number of foods that Ben will eat.  Part of this is because he is bothered by foods with texture.  Part of this is because he likes routine and consistency.  This is why he requests the same cereal every morning when he gets his breakfast at school. God bless the cafeteria ladies who save him back his favorite flavor of juice when they are running low. This is also why I pack him essentially the same lunch every day.  We are working on the food thing as best we can but it is not easy, so yes, we pick our battles.

  3)   I discipline differently than most parents
Early on, I learned the difference between a tantrum and a meltdown.  A tantrum happens when a child decides to throw a fit to get his way.  You can spot a tantrum because a child is watching for your reaction and is in control of the tantrum.  The child can stop a tantrum at any time.  A meltdown occurs when a child becomes overwhelmed by sensory input or emotionally dysregulated.  A meltdown is much more emotionally intense than a tantrum, and once a child reaches a full-fledged meltdown, they are no longer in control.  The meltdown is just as scary or more for the child than it is for those watching it happen.  So, yes, my husband and I have rules and consequences for my son, and we try to be very, very clear about our expectations.  Our son’s behavior is almost never a result to defiance but rather presents itself as an emotional outburst (often tears) as a result of frustration sensory overload, or an unexpected change in routine.  Therefore, while we give consequences, we are very, very gentle with him and try to give him tools to handle his big emotions.  When his emotions ramp up, then I have to make myself very, very calm.  Which leads me to…

  4)   I spend most of my money on squishy balls and play-doh
Now I know that some of you are thinking that your kids like these things too, but for my kid, they are a VERY big deal.  One of the strategies that we have taught Ben for dealing with his emotions is to squeeze a squishy ball.  He has a huge collection of them for this very purpose, and heaven forbid one pops, rips, or breaks.  We have social stories ready for this very purpose (Sometimes our toys break…)

Play-doh is another necessary tool.  It builds his hand strength, which helps him with fine motor tasks like writing.  One of his favorite things to do is open a brand new container of play-doh and inhale its unique smell.  Recently we learned to make play-doh using Kool-Aid and he has been in heaven experimenting with different scent combinations.

  5)   My life feels like one big movie script
Many children on the spectrum who are verbal like Ben engage in something called echoalia.  This means that they parrot back phrases that they hear others say.  Sometimes they may repeat a word or phrase right after the speaker says it, but in Ben’s case it is often stored away in his memory for later.  Often called scripting, Ben can memorize lines from his favorite books and movies and uses them during conversations and playtime.  I know that his teachers think that he has a vivid imagination (which he does), but they probably don’t realize just how often he is channeling one of his scripts.  For example, when he says “We regret to inform you that chapter three was a dream”, I know he’s quoting “Bad Kitty Gets a Bath”, or when he pretends to hack up a hairball in class (sorry Mrs. B), he’s acting out a scene from a chapter in “Bad Kitty School Days”.  Often he will use lines from these scripts in conversations, which he did tonight when he called Daddy back upstairs after bedtime and asked, “What about goodnight kisses?” in a perfect Agnes voice from the movie Despicable Me (Daddy did forget the kiss, and I knew Ben would be calling for it).  Ben has been scripting for a very long time.  In fact, I remember making a “cheat sheet” of Ben’s words and phrase for my parents (who live out of town) one summer when they came to watch him for a few days. 

  6)   We live our life by rituals and routines
Every parent knows the importance of having consistency and routine in their child’s life, but for Ben this predictability is his rock in what can be a very chaotic and confusing world.  I am reminded of this any time I deviate even slightly from our rituals.  Bedtime is a great example.  I’ve never taught him to do this, but I swear my kid can tell time.  If I try to start the routine a few minutes before the regular time, he’ll point to the clock and protest, “It’s too early!”  After teeth, books, and a story of what’s happening tomorrow (our social story which prepares him for the events of the next day) and prayers, I say the same phrase, “Mommy will be on Mommy’s bed.  Ben will be on Ben’s bed.  Have a good night sleep and I’ll see you in the morning.”  There’s almost something sacred about our ritual.  He needs it to feel centered and secure.

  7)   I celebrate the little things and find joy in ordinary moments
Most parents take for granted that their child will walk, talk, wave “bye-bye”, say “I love you,” ride a bike…  For some parents, each of these milestones is a long time coming, if ever.  So I try to never, ever, take for granted the progress that Ben makes.  Like the first time he had a real conversation with another person.  Or the time he started a game of hide-and-seek with some kids at the playground.  Or the moment when he snuggled up to me in the chair and leaned over to kiss me on the cheek .  These moments take my breath away. 

  8)   I let my kid have an iPad
      Yes, I said it.  My kid has had an Ipad since he could barely walk.  I know that some view this as indulgent but I have seen Ben benefit from the programs it offers.  We limit the amount of time he uses it, and lately he hasn’t even asked for it at home in the evenings because he is busy with art projects or checking on his trains. However, I do rely on it when we have to wait for extended periods of time at the doctor’s office or if we take a long car ride to a therapy session.  And, on the days when he has to stay a long time in the after school program, it gives him something to share with the other kids.  The coolness factor certainly doesn’t hurt.

  9) I honor my child’s requests whenever possible
      When Ben communicates to me that something is too much for him, then I listen because I’ve seen what can happen when I fail to heed his warning.  Like the time I kept him in a dark theater when he was petrified of the huge dragon puppet and then wouldn’t go into another dark place for months.  So if Ben doesn’t want to go on a ride at Disney, I listen and honor that request.  This doesn’t mean that he always gets his way.  If his safety is at risk or if there are existing plans that cannot be altered, he does have to learn to deal.  But, if I’m able to give him choices, I always do.  And if his request is a reasonable one that I can honor, I always will, because I want him to know that he can always communicate his needs to me and that they will be heard and respected

  10) I compare my kid to my kid
      Another thing I stopped doing very early is worrying about what my friend’s kid on Facebook is able to do that my kid can’t.  I’ve learned it’s much more productive to measure Ben’s progress against himself.  And while this doesn’t mean that I don’t have goals and expectations for him, I’m not going to stress if he’s not making the most soccer goals or if he doesn’t make captain of the debate team.  If he gets those things, it’s definitely a bonus, but I’m cheering for the progress he’s making, because he always gets there in his own time.

…and, in case you were wondering, here are ….
10 Things I Expect of my Autistic Child

  1)   I expect my child to have manners
      This includes everything from saying “please” and “thank you” when he receives an item to waiting for his turn to talk in a conversation.  We’re still working on these things but he is getting there.

  2)   I expect my child to pull his own weight
Ben is responsible for picking up his toys, doing his chores, which include taking in and out the trash and feeding the dogs.  He carries his dishes to the sink and puts his clothes in the hamper.  Ben is my helper at school and often runs errands with me at the end of the day.  Heavy work is a form of occupational therapy and helps with keep him centered.  Plus, it’s great for character building!

  3)   I expect my son to show kindness others…
…and I hope that the world will show kindness to him in return.  Ben is one of the most loving people that I know.

  4)   I expect my son to work hard and do his personal best
      Life can be extremely frustrating for him because it does not cater to his style of learning, but this is not an excuse to give up.  Every day is a lesson in perseverance and problem solving.  When his Legos break or he can’t get the glue bottle to work or the lid off a container, I expect him to find strategies to deal with this, even if it’s as simple as asking for help.  This does not mean that I am going to push him to his frustration point.  This also does not mean that I expect him to act like every other child.  My job is to provide him the supports that he needs to be successful, and then to gradually take these supports away when he is ready, which leads to…

  5)   I expect him to learn independence

I have full confidence that there will come a day when my son will be a successful, contributing member of society. I remind myself on a daily basis that, even though it takes longer, I have to let him learn to do things on his own.  Whether it’s styling his own hair or giving himself a shower, he’s slowly learning the skills it takes to be an independent little man.  And I could not be prouder.

Saturday, May 17, 2014

An Open Letter to My Son's Soccer Coach

Ben's soccer team doing their cheer, "Go Cheetahs!"

Dear Coach C,

As Ben’s first soccer season draws to an end, I wanted to take a moment to write this to you.   I know I said thank you today on the field, but I also know that those two simple words cannot convey just exactly how grateful my family is to you. 

There are not many people would volunteer their time to coach 4 and 5 year old soccer on a Saturday.  I know this because of the multiple emails I received pleading for coaches for the league.  If I’d had the slightest clue how to play soccer beyond “don’t touch the ball” I would have helped.  But you stepped up in a big way.

Friday, May 16, 2014

My Girl

            One of the main features of autism is difficulty with social relationships.  This means that friendships often don’t come easy for many on the spectrum.   My son's relationship with other kids is a bit unique.  At school, Ben is a bit of a celebrity because he’s a teacher’s kid.  Everyone at the school knows me, and therefore everyone knows Ben.  Each day when we come to school, several kids stop to say hi as we walk through the hallways.  I always remind Ben to say hello back, but often he runs straight past them on his quest to get to the front of the breakfast line or to his favorite center, the Legos.  No matter where he goes, kids seem to gravitate towards him.  Ben is in the before and after school program, and those children dote on him constantly.  I am so grateful that these children seem to genuinely enjoy my son, but I remind myself that he’s five and he’s adorable, so when he acts differently or cries, the children are quick to reassure him and help to guide him to whatever he needs to be doing. Still, I worry.    How tolerant will children be as he gets older and his differences become less socially acceptable?  Will children still want to be his friend, especially if he has a hard time showing that he's interested in being a friend too?  One day a child found out that Ben was my son and told me confidingly, “Ben’s weird.”  
          “Ben’s just a different kind of learner,” I quickly corrected him, but the worry continued to grow.  How many other children are already viewing him in this light?  I know I can’t protect him forever.  Which leads me to today…

Wednesday, May 14, 2014

The Truth Behind the Autism Label

 “Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work.  It’s that you’re destroying the peg.”  -Paul Collins


Wednesday, May 7, 2014

Sink or Swim

Yesterday was perfect pool weather in Florida.  It's May, and the temperatures are already creeping up towards 90 degrees.  After school, I helped Ben change into his swim trunks, and we jumped in the car and headed to our community pool.  Because, you see, I'm determined that this is the year that he will learn to swim.

The Diagnosis- One Year Later

Life is made up of moments.   Tiny moments that define us.  Some moments are so small that they barely cause a ripple in the river of our experiences.  Other moments cause that river to bend ever so slightly, altering our course.  Then, there are those jarring moments that veer us in an entirely new direction, taking us to a place that we never could have imagined.  These are the moments that define us.  Such a moment came for me as I sat in a chair much too small for me, in a tiny room meant for four year olds, when the clinician looked me in the eyes and said, "Have you considered that your son may have autism?"

The truth is, I had considered it.  As an educator, I know the signs.   In fact, looking back, all of the signs were there.   Very little eye contact.  Limited interests.  Absorbed in his own world filled with cars, trains, and basically anything with wheels.  I noticed how as a tiny baby, he would scream so hard that he earned the nickname "Red Ben", and I watched as he screwed his little eyes shut as if to block out the world that was just too much to take in.  A little voice inside my head whispered to me when my son never pointed to the pictures of the stories I read to him every night.  In fact, he never pointed at anything, never reached to be picked up, never knew how to hug, never said "I love you".  And the voice would whisper in my ear, "Not normal, not normal..."  But then, I would doubt.  I would remind myself that every child develops on their own timetable.  I'd convince myself that I'd wait and ask about it at the next doctor's visit.  I would watch and worry.  But no one else around me seemed concerned so I would shove my worries aside and absorb myself in my day-to-day life.

And then one day, I knew for certain that something was different about my boy.  It was Mother's Day, the year that he was three.  The teachers at his wonderful preschool made a video for parents, complete with a short clip of each child in the class singing a special song to their moms.  Each child was featured singing the song before flashing to the next cute little face.  I know that it's unfair to compare one child to the next.  I know every child is different.  But, I watched with gut-wrenching pain as each voice sang out sweetly and clearly, "I love my mommy, yes indeed.  She's so very good to me..."  And then, my beautiful baby boy's face flashed on the screen.  The tape clearly stopped and started several times as the teacher tried to get the best "take" possible.  I watched with a lump in my throat as my son gurgled an intelligible string of sounds.  After the third time watching the clip, I deciphered the word "mommy".  The final scene showed the whole class standing in a straight line, singing in a tiny chorus.  As the camera panned across the class, all the children stood tall and proud, their tiny mouths moving in unison to the words.  The camera quickly skimmed over my boy, swaying in the sidelines, hands shaking to his own rhythm, head bobbing uncontrollably.  And then, in a moment of clarity, I knew.  I didn't need to have an expert confirm what my heart now knew for certain.  My son was autistic.

A few days later, I arrived early to pick my son up from school.  I noticed the class playing outside on the playground.  I sat in my car and watched the children in his class happily running and chasing each other around the green grass, climbing the stairs and running in and out of the tunnels on the playground equipment.  It took me a moment but finally I spotted my boy wandering the outer perimeter of the fence, walking slowly, head down, and alone.  When I later related this story to the evaluator, I explained that I had thought that Ben preferred to play on his own because he is an only child.  "Actually," she explained, "Only children usually seek out children more than those who have siblings.  They crave company.  The fact that an only child prefers to be alone is highly unusual."  And, here I thought my son was a genius because he could play for hours by himself, intensely focused on building intricate train sets.  We had even nicknamed him "The Trackmaster".

So, after months of evaluations, checklists, observations, and assessments, Ben finally received the diagnosis of ASD (autism spectrum disorder), along with the classification of speech and language impaired.  Occupational therapy followed soon after as a related service.  As I sat in the meeting with the room full of professionals, it suddenly became very real.  For years, I had sat on the other side of the table at meetings such as this as the content area expert.  I would interpret literacy assessments and prescribe interventions for other people's children.  Suddenly, listening to my son being described in such clinical terms, I got a bitter taste of reality.  I realized how these words were not even coming close to capturing the essence of Ben.  I realized that these numbers, these ranges of "below average" and "clinically significant" results were not getting at the heart of the matter.  And I realized that it didn't matter because I knew my son best, and, for the moment, that was enough.

When the evaluator asked how I was feeling at the end of the meeting, my answer was simply this.  Ben is still Ben, no matter what label he receives.  My son has not changed from the son who I have always known and loved.  What matters now, going forward, is making sure that my husband and I surround him with all the supports that we can to make sure that he reaches his full potential.  This year I began the journey towards achieving this goal.  I began the journey believing that his autism would be a "temporary thing".  I now know that autism is a part of who he is, and I've learned that it's okay.  I fully believe that when my son grows up, his unique learning style will be an asset to this world.  I am not going to limit my son by assuming what he cannot do, and I am not going to allow others to limit him either.  Every day, Ben shows me that he is capable of exceeding any expectations that we may set for him, so I plan to never set the bar too low.

On the day one year ago when Ben received his official diagnosis, the evaluator told me something I will never forget.  She said that, as an educator and a mom with a child on the spectrum, I am in a very unique position to be an advocate, not just for my son, but for all of the children like him.  Because, you see, now it's personal.  My eyes have been opened to a whole world that I knew existed but I never really saw before.  I have a mission, and that mission is to help others begin to understand this huge thing that we call autism.  We fear what we do not understand, and I have learned that we cannot fear this.  We cannot hold these children at arm's length because these children are our future.   Each child has a unique story to tell.  This is the beginning of our story.