Dr. H adjusted his glasses and folded his hands on top of the stack of papers he had been reading. Looking up at us, he smiled a closed mouth tight-lipped smile and nodded his head once. “Okay,” he said. He raised his eyebrows and blinked a few times before continuing. “Joey has PDD-NOS.” Joe, (Joey’s father) and I stared at him silently. “…what’s…what is…what is that?” I asked, my heart slamming in my chest. Please God. Please God. Don’t let Joey be sick. Please God. “It means Pervasive Developmental Disorder… it’s part of the autistic spectrum.” Silence. Joe and I sat completely still just staring at the doctor. In the background I heard the hum of the air conditioner and the soft tick of the clock on the desk. My eyes slid over to my little two-year-old Joey, who was lying on the floor on his tummy, rolling a small truck back and forth as he peered at the wheels. Joe, a physician himself, said, “…so…what? Joey has autism? But… no. No. No. He does not display any of the idiosyncrasies of an autistic kid.” “He does,” replied Dr. H. “Those manifestations are what brought you here to me.”
WHOA. I covered my face with my hands and shook my head, taking a deep breath and holding it. Autism? It was the LAST thing I expected to hear and actually the WORST thing he could have said, even though it was something that never entered my mind! Not in a million. In my mind, I could see Dustin Hoffman in Rainman, rocking back and forth in the front seat of the car shouting that he had to see Judge Wopner, clapping his hands rhythmically. I saw him shaking his head with his eyes squeezed shut as he methodically repeated the same sentence over and over again. Oh my God. There are no words to describe the swirl of thoughts, the utter shock and the suffocating fear that flooded me at that moment. Joe said, “So what does this mean? Do we stop the college fund now? Is he going to work in a pencil factory? Will he have a life worth living?” Dr. H nodded his head and raised his eyebrows. “That depends entirely upon how you handle this. He needs intervention now.” “He’s Autistic?” I whispered. “No,” said Joe. “Well, yes,” interrupted Dr. H. “PDD-NOS is on the autistic spectrum. I think Joey is high functioning and shows the propensity for retaining and utilizing what he learns. He has significant delays but I suspect with proper therapies, he will respond nicely.” Joe held his gaze for a few moments. “Are you sure? This diagnosis…” he asked. “Yes,” said Dr. H. Joey tottered over to me and scrambled into my lap. I kissed the top of his head and inhaled his scent, my eyes closed. “Alright,” said Joe. “What do we need to do? Anything. We‘ll do whatever you tell us to do.”
Joey began Early Intervention immediately, starting with strangers in our house studying Joey and scribbling notes on their pads while they occasionally talked at him in a falsetto sing-song voice. I didn’t like it one bit. It only underscored how much Joe and I had failed our son. …that was my translation of the wordless grief that this diagnosis laid upon our backs. Then he began to receive speech therapy, occupational therapy and ABA therapy, five days a week, up to 6 hours a day. Some people shook their heads at us, unhappy with the “pressure” we put upon our tiny son. We didn’t listen to them…he was two years old, completely non-verbal, having mysteriously lost the babbling he once had, and eye contact was fading too. He began to do things like sway side to side with his little head turned so he could peer out of the corner of one eye. Then squinting began, as if he couldn’t see, almost all the time, and usually with his little face right against whatever he was looking at. Then he stopped responding to his name, as if he couldn’t hear. He would do things like swing his head rhythmically, spin and spin and spin in circles with his eyes squeezed shut, or run and smash into walls or the couch, hold one hand up near his eye and flap his fingers up and down, peer at items right up against one eye with the other eye shut. He became fascinated with circles and round objects, but not in a functional way… only staring at them for long periods of time, blankly. He would flip items over and spin them, and if he played with a car, it was not on its wheels, pushing it back and forth; he would flip it over on its roof, spin the wheels and get really close so he could watch the spinning wheels. He would line up everything and make sure all sides and corners were even. Cars and like items were lined up according to color and size, and everything needed to match; one day I dropped a 12 pack box of Sprite, and as the cans rolled out of the box and scattered, Joey picked them up, one by one and lined them up on the coffee table so that the tabs all were perfectly straight and spaced evenly. Joe and I looked at each other when we realized this was not a “bright” thing. Joe flipped two cans over, disrupting the pattern. Joey melted immediately into heavy tears and frantically turned the cans upright and back in order, and stopped crying once it was done. He could not handle visual disorder. What we once saw as “bright” we began to recognize as a hallmark behavior of autism. We had a window that was closing and we jammed that window full to keep it open for as long as we could. Soon, progress came. Where Joey used to float around aimlessly, he would now clumsily sign, “eat” or “drink”. He was communicating with us! Where Joey would usually stim by banging his fists repeatedly on the coffee table and run in circles with his head tipped and his eyes squeezed shut until we literally had to hold him still, he was now calmer, and more comfortable in his skin. We knew the key to unlocking Joey out of his silencing and restricting box was consistency. Period. What worked needed to be implemented as often as possible. And so we did. We attacked this autism with ferocity and we were most grateful for the progress our Joey was making. Our goal was (and is) to know that in this world, Joey could make it on his own, independent across the board.
Joey began preschool with very limited and prompted language. There, he made progress through more 1:1 teaching and constant peer interaction. He was given a personal aid who shadowed him through the day and he was pushed hard by a teacher who refused to shrug and say, “Well, he has autism, so…” She would say he was capable to climb up and over this diagnosis so she pushed him. Hard. Joe smiled and gave a father’s thumbs up while I grimaced and coddled my baby. So Joe said, “Shan. Do you want Rainman or do you want to attend Joey’s college graduation?” Noted. Thank God I listened. PDD or ASD or Autism or whatever label we feel comfortable with is still a diagnosis that, I feel, demands us as parents to take the deepest breath we can and blow into the sails of our children to help get them across that water, just like we would do with any other child. Autism doesn’t mean, “They can’t,” it means “How do we teach them to do this?”
Joey didn’t have conversational language until he was over 5 years old. We thanked God for a child with “only Autism” and not something like deadly Leukemia, and resolved ourselves to the idea that Joey would only sign and not talk to us. Then suddenly language exploded. Where did THAT come from? Who cares? He’s talking and now he won’t stop! I can’t get through a thought without being interrupted by Joey’s constant chattering. Thank you God. Again…this diagnosis keeps you guessing.
Joey is heading into the 6th grade now and attends a regular education school with typical children. He has a personal aid that the rest of the class thinks is the classroom helper. He helps Joey get back on track when he drifts away and he applies deep pressure and gets him up and walking when he begins to stim. Joey does not know he has Autism, and his father is adamant we not tell him. I fear that if we don’t tell him, he will feel betrayed one day when he learns of his diagnosis…sort of like finding out you’re adopted and nobody told you. Professionals and friends alike differ on their advice of whether or not to tell him. And some of my friends with children on the spectrum won’t even tell their friends and families, let alone the child themselves. Autism is a deeply personal “condition” that people greatly differ on with their approach and acceptance of. It’s a deep social stigma…but why? I really don’t get it. Is it the “retarded” label that all parents dread having others toss on their child? Maybe. Is it because nobody wants anyone else to look at their child with the compassionate “they’re in special ed.” face? God knows you better not make that face at MY son! ...yes, I hate it, too…because it limits my son mercilessly and unfairly. So maybe that’s why. Maybe us parents feel like admitting our children have it translates to us throwing in the towel and accepting a limited life, but not me. My son has the world in the palm of his hands and doesn’t even know it. This disorder causes my son to naturally think outside of the box because his brain just translates and sees and reasons and responds non-typically, but incredibly creatively and effectively! His problem solving far surpasses mine and I find myself asking Joey for help with some things. So I suppose the reason many parents do not share the diagnosis with friends and families is because we know that most of the time, the people we are talking to just don’t “get it” and its too emotionally exhausting trying to explain and justify and fake our way through our “hope”. It’s hard, for sure. I quit talking to one of my sisters about Joey because she just can’t stop telling me that Joey is “fine” and the doctors are wrong; it is consummately insulting when I consider the amount of work my son put in just to form a sentence. The hours and hours and hours for 3 years of very invasive speech therapy that my son had to get through is not something I care to dismiss or allow someone else to shrug off. How dare anyone. I cannot stop fuming inside when she says it, because no matter what I say, she will never “get it”. He LOOKS “fine” because he was saturated with therapy and we attacked this early! But she doesn’t know his daily life and his little quirks and fears and present delays…or hurt feelings when other kids make fun of him. It makes me mad. At those moments, she isn’t my big sister with advice, she’s “someone who doesn’t get it” so I dismiss her. It’s funny how everyone squares off with his or her opinions of Autism and how to handle it. All of us are right and all of us are wrong and that is the truth. In the nine years I have spent as an ABA therapist, this is the one common thread that every family I have worked with shares, and why I’m friends with the families; I get them and they get me and we need never “explain” to each other why our children “do that” funny little thing they all do.
Joe and I are no longer together; sadly, this is a very common statistic among marriages with a child on the spectrum. The guilt is overwhelming that Joey not only has to shoulder his world with this disability, but now he has to shoulder it while being shuttled between two houses. Such is life though, and our disbandment suddenly fuses again when it comes to Joey. In each other we have the common goal of getting Joey on his way to a world of independence. We take off our boxing gloves when it comes to him, and we both take deep breaths, filling our lungs until it hurts and blow into Joey’s sail, together. That boy is our world. Autism is not.
I deeply and strongly encourage families to not fall into the groove of identifying themselves THROUGH the Autism. IT DOES NOT DEFINE YOUR CHILD. I believe with all of my heart, that our children and their uniqueness define what Autism is. Not the other way around.
My son is in the fifth grade. He is blonde, he loves Pokemon and dogs and swimming and can draw like nobody’s business. He’s obsessed with Titanic and can tell you anything about that ship, from it’s weight to it’s length from bow to stern, to all of the theories of her demise. He has an enormous collection of Legos and a million unfinished little cities he builds with them. He never remembers to make his bed and his bedroom is strewn with comic books, action figures and video games. He has beautiful manners; he shares, says, “Please” and “Thank You” and even holds doors open for ladies. He treasures his joke books and playing card collection and begs me to stop what I’m doing to play “Go Fish”. He loves to sing and is the most cheerful kid you’ll ever meet. ….oh yeah, and he has Autism. (Shannon Kuratli-Parent & Professional)
Contributions to this blog are made by Celebrate the Children's highly talented, interdisciplinary team and wonderful families.