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, which would usually end with you being huddled in the corner begging me not to touch you, or look in your direction. In 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? Just wait until you grow up and see how scary this world can be. Why now, at such a young age?
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? It all began to kick back in, my years as a social worker 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 twenty-five minutes at the neurologist we were told you had autism.
“Excuse me”, I said. The doctor responded with, “Really, you didn’t suspect it? Most parents have an idea before they come in.”
As the tears welled up, I looked to your dad. Don’t do it he was thinking. He knows me well. Don’t cry, we know him best. That’s what he was telling me with his eyes. You see your dad never believes what someone tells him the first time. He’s a wild card like you. I on the other hand, tend to think things are how I’m told they are. I never questioned as much as I should.
Things we knew about you before entering that doctor’s office. Well we knew you were hyper, had difficulty paying attention to one thing for too long. We knew you took things very literal and thought very literally in general. We knew you were sensitive, and we knew you did not like things to be moved out of their place. Like 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. 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 3 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 that 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.
And so led to your first test son. They told us you would be given 2 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. Ha. Watching you walk away to take your test was the sweetest. You took her hand and said bye to us. Your father and me looked at each other in surprise. “I guess the stranger danger talk needs to be next.”
For the second half of the psychological assessment we were invited in. We were asked to be observers, something I already was. “Do not interfere unless your son approaches you, then your interaction with him will become part of the test as well”, the therapist said.
Sh*t just got real.
My insecurities kicked in immediately. What will she think of me? Did we create the behaviors? Does she like my outfit? Why does she wear her hair that tight? I want sushi for dinner. Should I buy colored mascara? Oh my God, I’m definitely the problem. Focus baby, you know what to do. 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. Am I in denial? I found myself agreeing with them next. 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. 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 had to go 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 were looking at me with pity, no concern; actually…I can’t tell what the hell they were thinking. “It was noted that he did show unusual responses to sensory aspects of toys or surroundings such as putting the play dough to his lips, and sniffing items during the observation.”
As I listened and read through the reports, I couldn’t help but think of when I ate glue in kindergarten. As a young girl I used to pick my nose and rub my boogers between my fingers and then stick it in the front strand of my hair to make the perfect Barrette. Should I share this information with the table? Probably best to keep it to myself. 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. Cleansing me, and cooling my body. 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. I found myself thinking back as they spoke in slow motion with no words coming out of their mouths.
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 myself have attempted joining the stay-at-home-moms in their stretch pants glory take their children all over town to every event possible. It was always interesting with you my boy. Some of the coolest opportunities were missed out on. 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 actually had me convinced that it was all a trick and that we were in fact not going to make it back. 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 walk around 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 off area with elephants. Ten dollars per person to ride the elephant. 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 waist 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 having a moment. One of those mommy moments. I was so proud of you son. And yet, you were just being you. You weren’t trying to make me proud, or show off. You were just being you. I love 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? So I googled it. 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 year’s son? Or did you just feel like riding the elephant that day. Is it the fantasy side of life that lures you the most? A horse, a tractor, they are things you see every day as we drive down the road. But the elephant, maybe the elephant appeals to you because it’s exciting, something worth your attention. Or perhaps you just felt like riding the elephant that particular day.
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. But 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. Perhaps you do lie somewhere on the spectrum. Maybe there are some sensory issues going on.
Good to know. But meaningless in the end.
You are a unique spirit. Which makes you no different than anyone else, but an exceptional person at the same time. My wild card. My son, who like the elephant, would prefer to roam free and play in the mud than be confined. I asked you the other day if you remembered riding on the elephant. Your response was this, “Maybe later, I have a lot of work to do.”
I’m sure that’s true baby.