December 28, 2013

A Letter to My Son, the Wild Card. ~ Jenifer DeMattia

At two and a half years old, there was a change in you, my son.

Some would call it a temper tantrum; I would refer to it as running a marathon while watching “Terms of Endearment” on repeat. It was an emotional roller-coaster for us all that would usually end with you being huddled in the corner begging us not to touch you, or look in your direction.

It made me feel sad; helpless. But most of all, I felt really scared for the first time as a parent. You seemed scared too.

In fact, you were scared of lots of things. Literally, your own shadow. You cried because your shadow was a permanent part of you. I was lost.

Why is such a little guy who sees only the good in the world so scared? What does this mean for his future?

I began to study you very closely. Suddenly, you had become a mystery to me, which is so strange considering we were once so in sync. When does he get the most upset? What does he do? How long do these emotional outbursts last? My years as a social worker began to kick back in; my occupation before I made you my full-time job. What are his triggers? What coping skills are helpful?

Eventually, we consulted the “experts” when you were three—within 25 minutes with the neurologist we were told you had autism.

Things we knew about you before entering that doctor’s office:

We knew you were hyper and had difficulty paying attention to one thing for too long. We knew you took things very very literally. We knew you were sensitive and we knew you did not like things to be moved out of their place. (The time I moved a table while you were sleeping and you spotted the change immediately as you walked down the stairs the next morning, for example. You sobbed and told me to put it back. I thought it was strange, but maybe you were just born with an eye for decorating.)

I knew you didn’t like to sit for more than three seconds at a time, and that you hated crowds and became overwhelmed when too much was happening at once. It seemed like every cookout we attended, you ended up crying and naked at the end. (Because you refused to take naps and became so tired and overwhelmed, even spilling a drop on your shirt resulted in the necessary removal of all clothes, like they were burning your skin.)

Going to a restaurant with you was like going to church—we spent the whole time just praying.

We knew that you were observant, smart and very loving.

The first thing we thought was “Wait a minute, he has no trouble speaking and communicating with us.”

The doctor recommended a second opinion, so we got one.

That led to your first test. They told us you would be given two tests: a developmental assessment and a psychological assessment. Your developmental assessment was what we expected: difficulty focusing on one activity for too long, but other than that, you passed the test.

For the second half of the psychological assessment we were invited in; we were asked to be observers.

“Do not interfere unless your son approaches you, then your interaction with him will become part of the test as well,” the therapist said.

The test was hysterical. The therapist asked you to play with a family of dolls—you could care less. In fact, you ignored her when she tried to play house with you. You wanted the fire truck and when asked to switch to a new activity you said “No.” You wanted to play with the truck. Then came the baby doll. You did not want to feed the doll or set up a birthday party for it. You wanted the fire truck.

“OK, so he’s not listening that great, but I think he’s doing pretty good,” I whispered to your dad. And then it was over. “What do you think?” we asked. “Anything that you can tell us now?”

“Yes,” she said. “I’m pretty sure he’s on the autism spectrum.

When we got in the car, I cried. Not because they said you were likely “low” on the autism spectrum, but because I couldn’t see it. You are my son and I couldn’t see it. I spend all day with you and I don’t see what they see. Was I in denial?

I found myself agreeing with them and trying to fit my son, my square peg, into their round hole. I went home and got on the computer and did what any confused parent does. I Googled you. I sat on the computer and read until my eyes burned. Why can everything be going great and then seconds later we are in the midst of an emotional explosion? It was like an unexpected bomb hit us. How can our boy be so predictable yet so unexpected at the same time?

Then I found you. Well, not you exactly, but similar stories of parents searching for an answer. Sensory Processing Disorder. It explains the crowds, the clothes needing to come off and the emotional meltdowns. I shared what I found, and ultimately the “experts” agreed.

I went to the final meeting alone. The meeting where they shared the results of your two tests and gave their recommendations. I was very pregnant with your brother and they must have thought I was slightly psycho because it was 100 degrees outside and I was covered in sweat. I was nervous and hot as hell. I also wouldn’t stop talking.

They went through the different tests, the ADOS, ABAS-II, the ASRS. Ultimately, it was determined that although you had many behavioral characteristics similar to children diagnosed with Autism Spectrum Disorder, you did not meet the requirements for a diagnosis and that sensory processing could very well be a factor. You were signed up for pre-school in the fall and the consensus was to see how you did in school and then have you assessed again if there were major issues.

As they read their results, a wave washed over me. I realized that the events of the last month since the testing had already led me to discover why you acted the way you did.

It was when the circus came to town that I discovered who you were.

You see, up until this point we had tried to take you everywhere. I’d attempted to join the stay-at-home-moms who take their children all over town to every event possible. Your obsession with Thomas the Train led us to the actual railroad where they offered a day out with Thomas. A real train that looked like Thomas. Parents of the Year, we thought we were, until we went to board the train and you held onto the door with your hands and screamed “No” at the top of your lungs.

You spent most of the ride on the floor crying. We tried Thomas again the following year with the same result. We were offered the opportunity to go to a horse farm and had the pick of the most beautiful horses to ride on. Nope. “Very scary,” was always your response. Hay rides, not a chance. Grampy’s tractor was a no-go. Even if we told you we had a new movie to watch, you broke out in tears because it may scare you.

We arrived early to the circus because we wanted to get a good seat. Perhaps seats with a location close to the door if you weren’t able to sit for that long. We didn’t know what you would think of the circus.

You are a wild card, remember?

Outside of the massive tent was a gated area with elephants. It was $10 per person to ride the elephant and your Nana was insistent that she was going to buy you a ticket. I looked at the excitement on your face as you stared at the big top tent and then I got a little sad. I was sad because I knew you wouldn’t ride the elephant and because I wasn’t sure how you’d respond to the show. “Don’t waste your money,” I told her. She was not looking at me though, she was staring behind me—she was staring at you. She was staring at you pushing your way through the crowd, up the stairs to where you climbed on the elephant.

“Buy the ticket,” I said.

It was you, your dad and your cousin Brooke. You all climbed the stairs and rode the massive animal. You didn’t hesitate getting on the elephant, and you smiled practically the whole time. I watched from the sidelines. A spectator. The world stopped moving. I was so proud of you—you were just being you.

I went home and thought about the day. You enjoyed the circus, but the highlight was the elephant ride. For me, it changed everything. I tried to discover the meaning in your elephant ride—was the elephant a symbol of some sort?

Back to Google I went.

Elephant: large mammals…herbivores…ah yes, here we go: they use dirt and mud as sunscreen, now there’s something you have in common. They are intelligent and have an excellent memory like you. But there has to be some deeper connection between you and this magnificent animal. In many cultures elephants represent strength and wisdom. Ganesh, the elephant God representing wisdom, is one of the Hindu religions most popular Gods.

Are you wise beyond your years, little one? Or did you just feel like riding the elephant that day? Is it the fantasy side of life that lures you the most?

It took me some time, but eventually I did discover the meaning of the elephant. The one fact I know to be true is that I’ll never know why you were so excited about riding the elephant; only you know the answer to that. And by the time we are able to have this conversation, you probably won’t be able to tell me.

To you, it may just be a picture in the memory book of your life. To me, the elephant represented the beauty of aging, of growing up, and the immense importance of never ever limiting yourself or someone else by thinking you know what anyone is capable of, because we don’t.

You have continued to surprise me since that day.

The day the circus came to town was the last day I ever thought about labeling your behavior.

You are a unique spirit, which makes you no different than anyone else, but an exceptional person at the same time.

Want 15 free additional reads weekly, just our best?

Get our weekly newsletter.


Assistant Editor: Miciah Bennett/Ed: Bryonie Wise

Photo: Jenifer DeMattia

Read 7 Comments and Reply

Read 7 comments and reply

Top Contributors Latest

Jenifer DeMattia  |  Contribution: 1,800