I didn’t know what was going on with my son Evan. One day he was a completely healthy 2 year old and the next he kept having life-threatening seizures. Countless doctors and hospitals couldn’t get to the bottom of the problem; no one could determine the right diagnosis.
We continued trying different anti-seizure medicines, but they either made Evan act psychotic or like a zombie. Finally, I got an appointment to see the best pediatric neurologist in Los Angeles.
I was beyond nervous in the doctor’s office. My heart was beating so loud that I bet Evan thought it was a drum in the next room. When the door opened and a sweet older man walked in, I immediately felt good. I started telling him about all the seizure activity that had taken place and what had been said thus far about Evan.
The doctor listened closely but fixed his eyes on Evan the whole time. I could tell he was evaluating Evan and his bizarre behavior. He asked me a couple questions and seemed peaceful throughout the entire discussion. I was starting to feel more and more relaxed as the pediatric neurologist played with Evan. The doctor then stood up, opened his office door and told his secretary to cancel his next appointment. I thought to myself: Wow, he must really like us. This is some major VIP treatment. The pediatric neurologist closed the door and pulled his chair up close to mine. He put his hand on my hand. He looked at me with sorrowful eyes and said, “I’m sorry, your son has autism.”
I stared at the doctor while remembering all the signs that led up to this diagnosis. I felt each membrane and vein in my heart shattering into a million pieces. Nothing prepared me for this. I couldn’t breathe. I wanted the suffering to end. I had endured so much, watching my son have seizures and psychotic reactions to medications. I looked at the doctor with pleading tearful eyes: “This can’t be. He is very loving and sweet and not anything like Rain Man.”
“Every child is different,” the doctor responded. “Some aren’t as severe as others.”
I remained frazzled, saying: “I don’t understand. How can this be? How can you tell just in a few minutes?”
The doctor looked at me and then pointed to what Evan had made in the corner. Evan had taken those ear cones they use to look inside your ears and made the most perfect row lined up across the room.
“Does he line toys up at home instead of playing with them?,” the doctor asked.
“Yes, but don’t all kids do that?”
“Nope, not all,” the doctor said. “And they all don’t flap their arms like that either.”
I looked at Evan and saw that he was flapping his arms like wings. I offered, “Oh no, he just does that when he gets excited.”
The docor revealed, “That is called a stim.”
“A what?”
“A stim. A self-stimulatory behavior. It’s an autistic trait.”
I looked at Evan and saw him flapping— and once again my heart shattered. I had always considered the flapping as an adorable characteristic of Evan’s that was cute and unique; I even called him my little bird. I almost felt betrayed, as if I didn’t know this child standing in front of me. Everything I thought was cute I learned was a sign of autism, and I felt tricked. I guess the doctor realized my thinking because he turned my head back toward him and said, “Evan is still the same boy you came in here with.”
In my eyes he wasn’t. This was not Evan. Evan was locked inside this label, and I didn’t know if I would ever get to know who Evan truly was. All the behaviors I had thought were personality traits were characteristics of autism. Where was my son, I wondered, and how the hell do I get him back?
I turned into a detective and thanks to a ton of Google research, the support of UCLA and my DAN! (Defeat Autism Now!) doctor, I found the treatments that worked for Evan.
Evan is now 5 years old and able to completely communicate. As we can finally talk, I ask him questions now that I badly wanted to know the answers to during the crisis of determining the appropriate diagnosis. When I asked him why he flaps his arms, Evan replied, “Because I get so excited and then I fly just like the angels do.”
Not all children with autism are able to make leaps like Evan. Some parents have worked longer and harder then I have, with no success, trying the exact same things to help their children. I have no idea why some treatments work on some kids and not on others. But I beg moms and dads to at least try to find the right treatments. I will work my ass off raising awareness for autism and banging down doors to get answers.
In the meantime, don’t give up hope. Remember that acceptance of your child’s condition does not mean giving up— it simply means loving your child for being the perfect little spirit he or she is. That was the shift I had experienced before Evan’s healing even began. Faith is what continues to keep me moving forward.
