Day 27: Acceptance is Unconditional

Ben getting his Bad Kitty book signed by his favorite author, Nick Bruel.  Ben's autism doesn't stop him from living his life every day.

Today Ben and I took our first trip of the season to the neighborhood pool.

There were several families enjoying the water, so we chose the side of the pool that was the least crowded.  There was just one family – a mom, a dad, and their little boy and girl.  The boy looked to be a little bit younger than Ben.  He wore his arm bands and splashed on the steps by the edge of the water.

When we swam near the family, the mom said brightly to her son, “Look, a little boy your age.  Why don’t you say hello!”

The little boy stared off into the distance, but Ben obliged and said, “Hi, I'm Ben!” 

Still, no response from the other little guy.  His whole body was turned towards the fence, and he was staring at the wooden owl that was supposed to scare the other birds away.

The mom tried to engage again, “Our new friend is talking to you.  Can you tell him your name?” 

Still, no response.

“He’s only starting to have conversations with others,” the mom said apologetically.  She told me that her son was five. 

The familiar flash of recognition registered in my mind, especially as I watched the boy flapping his hands and running off moments later, his mom chasing behind as he ran from the pool area. 

The mom was pretty busy after that, chasing after her son, encouraging him to try to swim in the water, so we never had the opportunity to talk again.  If we had, I may have asked her more about the Pre-K class that she said her son attends.  I may have gently prodded to see if she recognized what I could not help but see in a few short minutes of time with him- characteristics of the spectrum.  I am not a doctor and so I would not have offered my opinion of a diagnosis to her, but if she had asked, I would have pointed her in the direction of professionals who could tell her more.

It has been nearly two years since we received Ben’s diagnosis.  I’ve grown a lot in my understanding of autism but, more importantly, in my understanding of how to be a mom to Ben. 

Here are a few things that I would have told that mom if she had asked about autism- and I wish someone had told me two years ago when I was first learning what it meant for our family.

1)   Autism is not the end of the world.

Too often, when a parent receives the autism diagnosis, they are made to feel like the world is coming to an end for their child.  They paint the picture of a bleak future.  Some parents have been told that their child will never graduate from high school, never go to the prom, never live on their own.  Many, many autistic individuals have proven these so-called experts wrong.  Don’t listen to the doom and gloom prophesies.  Yes, the road is a hard one.  But no one knows what the future will hold for your child.  Don’t limit their possibilities- they are capable of far more than we can imagine.

2)   Autism is not going away…and that’s okay

Autism is a pervasive developmental disorder.  This means that it impacts every aspect of a person.  It is impossible to separate the autism from the individual, much like a person’s hair color or eye color.  You can change your hair and eye color, but the original color will still remain underneath.  In much the same way, a child may appear to “change” through therapy, but they will always be autistic.  Some people say that they hate their child’s autism, and, while I understand where the anger is coming from, we must be so careful with our words, because our child will hear this as “we hate him” and they will learn to feel like a burden.  I choose to look for the many strengths that Ben’s autism brings him, including his amazing memory, his intense focus on his interests, his love of numbers, and his unique perspective on the world.  I love him for the person who he is, autism and all!  We work through the tough parts and we seek to make the challenges less- but, through it all, I make sure that Ben knows that he is loved, no matter what.

3)   Autism is a spectrum

There is a saying that when you’ve met one autistic person, you’ve met one autistic person.  Before Ben’s diagnosis, I knew very little about autism.  Like most people in my age group, I associated autism with the movie Rain Man, because that was my only real reference point.  Even as a teacher, I never encountered a child on the spectrum in my classroom.  I think this was why it took awhile for me to recognize the characteristics in my own son.  They presented in different ways then I had heard about, and so it was easy to dismiss them.  Now, I am much more adept at recognizing the signs in others and I realize that there are many, many people in this world on the spectrum, children and adults alike, some diagnosed and some undiagnosed. 

4)   Autism alone does not define my son

Ben is so much more than his autism diagnosis.  One thing that I understood early on is that Ben is still the same kid that he was before he received the diagnosis.  (If anything, he's even more awesome now!) The reason that we agreed to the diagnosis was to help define his unique strengths and challenges so that those who work with him would have an understanding of the reasons for his characteristics and behaviors.  It allows us to set goals for him that can be addressed through specific therapies and interventions.  Some parents choose to not put the label on their child because they are afraid that society will treat their child differently.  Others simply refuse to accept that their child could be autistic.  However, the fact remains that if a person is on the spectrum, they are autistic whether you choose to formally add the label or not.  And, as such, they will most likely have behaviors that set them apart as different anyway.  I would rather educate people and help them understand why Ben acts a certain way, rather than have him labeled a “behavior problem” or an “odd kid”.  Sadly, there have been times when he has been treated differently when people learned about his autism, but it has also been a great learning experience for many people.  He has played soccer, taken part in theater classes, attended swimming lessons, flown on airplanes, cruised the Bahamas, and done many, many other things that many adults haven’t even experienced.  In short, he’s living a happy, full life.  Autism brings its own particular challenges, but it isn’t stopping him from living.

5)   Keep the worries in check

I’m learning from my other mom friends that worrying comes with the territory of parenthood.  Moms of special needs kids have their own unique set of worries.  We worry about our child succeeding at school.  We worry about bullies and if our kid will have friends.  We worry about our child’s future as a grown up.  We even worry about who will take care of our child after we are gone.  I have learned that the worry will consume me if I let it.  Thankfully, I’ve met some great moms who also have kids with special needs.  They are great listeners and can offer advice when I need it because they truly get it.  They have been down this road too.  When I feel the worries setting in, I turn to them, and then I get busy living my life, spending time with my amazing kid.  For, as one of my mom friends says, our kids remind us that they are awesome no matter what!

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.