Tuesday, February 16, 2016

A Person is not a Diagnosis

"Listen to the mustn'ts child.  Listen to the don'ts.  Listen to the shouldn'ts, the impossibles, the wont's.  Listen to the never haves, then listen close to me.  Anything can happen, child.  Anything can be."  -Shel Silverstein.
It has been almost three years.

Three years since my son was evaluated and received his official diagnoses.

He was four years old.

I still remember that moment, sitting in that conference room and hearing the official classifications for the first time.  He was diagnosed with ASD (autism spectrum disorder), SPD (sensory processing disorder), LI (Language Impairment), SI (Speech impairment, specifically with a phonological processing disorder), and in addition to qualifying for speech and language services, he also qualified for OT (occupational therapy).  That's a lot of alphabet soup for a very little boy.

And so it is that during this time of year, I find myself reflecting back to that moment- the moment when these diagnoses became a reality for my son.

Over these past few years I have uncovered a great contradiction that comes on the heels of a diagnosis.

On one hand, a diagnosis helps to provide an explanation for a set of behaviors and, often, a plan of action with the promise of services and supports.  It can be frightening at first to come to terms with a diagnosis but, over time, there is a sense of relief and freedom in having a word to describe these differences that you see within your child or possibly within yourself.

However, there is another side to the diagnosis- and herein lies the danger.

If one is not careful, the diagnosis can define the person rather than the other way around.

We hear the saying all the time.

You know the one.

It goes something like this, "If you’ve met one autistic person, then you’ve met one autistic person."  

We know that autism is a spectrum.

We know that sensory processing disorder presents differently in each person.

And yet, we still seek ways to define and quantify them. 

Perhaps is has to do with the endless questionnaires and checklists that we fill out, first for the evaluation center, and later for the dizzying array of therapists or for our child’s school.  The questions on these checklists assume certain things about what our children can and cannot do and leave little room for anything outside their neat little boxes.  

It continues later, at home late at night, as we search for answers to our burning questions through endless Google searches.  What we fail to realize is that we are limited by the questions that we ask and the answers that we receive.  

We look for examples of our children, or ourselves, in the blog posts that we read or in other children we meet in therapy sessions.  We begin to assume that the behaviors that we see now mean forever and, slowly, the despair sets in.  And while there is comfort in finding a community, a danger lurks in the fixed mindset that creeps into certain comments that we read from others, creating a low ceiling of expectations for our children or ourselves.  

Please understand that I am not advocating that we push kids and ourselves to the breaking point.  I’m just saying that, too often, we allow an autism or SPD label to set the bar too low or to create sweeping generalizations to describe our kids.

Also, please know that I am eternally grateful to the teachers and therapists who have come into our lives and who have helped us along the way.  I am grateful to the family and friends who were there for me and who continue to be there for me.  I know I am lucky that Ben has such an amazing support system surrounding him.

But, even with that cocoon of love and support, it is easy, so easy, for us to lose our way.

Too often fear takes over and silences that inner voice that whispers that our child is so much more than the data points on that bell curve we just received from the latest meeting, or the summary statement that stares at us bleakly on top of the huge evaluation report.

The biggest thing that I have learned over the past few years as a parent of an autistic son and a son with SPD is this:

Ben's autism and his sensory profile are integral components of his neurology and his personality.  I cannot separate the autism from him, nor would I want to.  It is a part of who he is.  However, the person who he is today is not the same person who he will be in the future.  He will grow and change, even though he will never grow out of his autism.

Also, even though he is autistic, he is no less of a human being.  His autistic self and his sensory profile are as unique as his fingerprints.  They are a part of him, but they are not all of who he is.  No survey, questionnaire, or expert can define him.  He defines himself.  And, more often than not, he defies expectation.

Here are a few examples:

Myth 1:  Autistic people lack empathy.

I never truly bought into this myth because I’ve seen so many examples of my son defying this on a daily basis.  You can read one example here from a couple of years ago.  What I have found to be true is that my child shows empathy in his own way.  I think that some say that autistic people lack empathy because it’s the easy answer.  Those who say this simply don’t know where to look. 

Here's a recent example of Ben's empathy that I almost missed myself.  We recently had to pick out Valentine’s Day cards for my son’s class party.  As we stood in the aisle at Wal-Mart, I pointed out the wide selection of colorful boxes.  I steered him towards a couple of options that I thought he’d love, especially the scratch art variety, since he loves to draw and color.  However, Ben had his eye on the Skylanders cards.  Ben had never shown even the slightest interest in Skylanders before.  However, after asking him a few times if he was sure, I allowed him to make his choice.  They were his cards, after all.

Ben went home and immediately got the list out from school that had the names of his classmates.  Even though writing can be a challenge for him, he carefully wrote the name of each classmate on a card until they were all finished.  Then, we set them aside until Valentine’s Day.

I didn’t think much of the cards until it was time to pack them in his backpack on the day before his class party.

“Landon is going to love my cards,” Ben commented as I placed them in his backpack.

“Why?” I asked.

“Because Landon loves Skylanders,” he replied.

And then it hit me.  Ben had chosen those cards weeks ago with his classmate in mind.  He chose the cards that he knew that his buddy would enjoy.  If we hadn’t had that conversation, that clear act of empathy would have totally passed me by.

Don’t believe for a second that people on the spectrum are devoid of emotion.  They feel, probably more deeply than most, even if you can’t see the evidence to prove it right away.

Myth 2:  Autistic people and those with SPD hate being touched.

It is true that some people cannot stand physical touch of any sort.  However, for many people, the type of touch matters.   I’ve learned from Ben’s OTs that there is a difference between the way that people respond to light touch and deep pressure.  Light touch is typically alerting while deep pressure is usually calming.  Think about how differently your body responds to feeling a spider’s web on your arm as opposed to a deep tissue massage. 

My son has always responded well to physical touch.  It calms him.  When he is upset, a deep hug reassures him better than any deep breathing technique.  His favorite thing to do in the evening is to cuddle up next to me as he relaxes before bed.  You can read about our special evening routine here.  

It is important to ask permission before touching another person, spectrum or otherwise.  I never force my son to display physical affection.  It’s up to him to give consent, because I want him to know that he is in control of his body.  However, when used properly, deep pressure can be very calming and reassuring in an often-scary world.

Myth 3:  Autistic people and those with SPD cannot handle anything over-stimulating.

The sensory world can be a lot to handle and often confusing.  However, I have learned that I shouldn’t allow this to limit my son from enjoying life.  This is where knowing the person is so important because what is too much for one person to handle may be just right for another.  Or, what may be too much on one day may be fine the next (or, fine for awhile until it becomes too much).

In my son’s case, he may be able to handle and enjoy the event itself (with support) but he will undoubtedly need a lot of down time afterwards. I’ve learned to take my cues from him and let him decide what is too much and when he’s had enough.

Recently we celebrated Ben’s seventh birthday in Orlando.  We decided to take him to see The Blue Man Group.  In case you haven’t heard of the Blue Men before, they are three guys who are painted blue (hence the name) who do strange, amazing, and hilarious things on stage, such as drumming while paint sprays out into the audience.  Before we paid for the tickets, Ben watched some You Tube videos of the show and found the guys very funny.  I’d seen the show myself in the past and I felt he could handle it.  However, when I told a friend that I was taking Ben, her immediate reaction was concern.  

“You’re taking him to see the Blue Men?  Do you know how loud that show is??  And there is strobe lighting?? Not to mention those guys are creepy looking and they walk into the audience.  It seems like the recipe for a sensory nightmare to me!” 

I appreciated her concern.  I knew she was looking out for Ben’s best interest and, quite honestly, I knew there was a chance it would be too much for him.  However, we went to the show prepared.  We had his noise canceling headsets (which he immediately requested and wore the entire time).  Luckily, as we hoped, he had a great time.  He had a general sense of what to expect because he’d seen it on the videos, so he was not caught off guard.  His favorite part was the dance party at the end when the giant glowing beach balls fell from the ceiling and bounced around the auditorium.  What could have been a potential disaster turned into a fun evening.  Now I’m certainly not suggesting that every kid with sensory needs should go see the Blue Men.  What I am saying is that, with supports, our kids should still be able to enjoy the world around them on their terms. 

Myth 4:  Autistic people cannot tell or understand jokes.

It is true that many people on the spectrum are more literal-minded so jokes and idioms can be more difficult for them to get.  This doesn’t mean, however, that they can never understand or appreciate humor.  It’s been fun to watch my son’s blossoming sense of humor.  

I come from a family who enjoys a little good-natured fun.  My husband and father are both jokesters.  Lately Ben has been able to recognize a certain tone in my husband or father’s voice and has begun asking, “Are you teasing?” 

This past week I watched my son attempt to tease me for the first time.  I installed an app on his iPad for the Oregan Trail. (It’s a modern version of the game so many of us from my generation remember from our childhood.)  There is this one particular song on the game.  It has this annoying repetitive twang that grates on my nerves. 

“Oh, no! Not again!” I exclaimed as the song came on.  “This drives me crazy!!” 

Ben dissolved into a fit of giggles and got a mischievous look in his eye.  Then, he started the game up again, just to play the song and watched for my reaction. 

“Do you like this song?” he asked sweetly, knowing full well that I didn’t. 

Another example is his attempt at magic tricks.

“Which hand has the coin?” he’d ask, presenting me with two closed fists.  If I guessed correctly, he’d quickly try to swap hands and ask me to try again. 

Humor may look different for each of us, but that doesn’t make it any less valid.

Myth 5:  Autistic friendships should be discouraged.

This was a lie I bought into for a short time when Ben was in preschool.  I was told that Ben should not play with other autistic children because he would learn incorrect habits from them.  I was told that he would not learn proper social skills.  I am so glad I didn’t listen to this because one of his best buddies is also on the spectrum.  On Ben’s birthday, as we were waiting for our dinner at Chili’s, we got a call on the phone, and it was this buddy wishing him a happy birthday.  Apparently he’d been waiting all day to call.  I cannot ask for a more loyal friend for my son.  They have a special bond and it is a joy to watch them play together. 

So, the moral of the story is this. 

Your child is a unique person.

There is no other child like yours in this world. 

No book nor questionnaire can define him. 

Your job is to let go of the worries and fears about doing it wrong. 

Give yourself permission to make mistakes and try again.

There is no race to the finish line.

There is no magic window that closes.

So let your child be his own unique, wonderful self.

Teach him to know himself so he can advocate for his own needs.

Love him for who he is.

Then, in your heart of hearts, you’ll know that you’re doing it right.

*I use the pronoun "he" throughout this post, but of course all of this applies to females too!

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!