Excerpt from Mother Warriors
"Jenny," the stagehand said. "We're going live in five minutes. You need to sit down."
I looked down in front of me and prayed to God to give me strength. I opened my heart and then looked back at the stagehand. He put his hand on my shoulder and said, "Oprah will be out there in a minute."
My eyes welled up as I slowly began walking. I exited the dark room in which I had waited, shaking and praying, and soon entered the studio, bright with lights and filled with women. I faintly heard the sound of applause, but the tone of the applause was different from what I was used to hearing. It wasn't a frantic slapping of hands with big grins on everyone's faces. It was slow, deep, and sympathetic. I sat down in my seat and looked at the crowd. I witnessed a room filled with five hundred women who had now grown silent. They looked at me encouragingly and I took a few deep breaths to center myself.
We sat down and the stagehand said, "Two minutes till live."
Oprah beamed and said, "I love live!" and the audience chuckled.
As she gathered her notes, I leaned over and softly said to her, "My intention today is to offer hope, faith, recovery."
She smiled and responded, "Well, then let us say it again. The intention for the show today is hope, faith, and recovery." From her energy at that moment, I had no doubt she was right.
"We are LIVE in...FIVE, FOUR, THREE, TWO, ONE."
Oprah's voice echoed in the theatre, "If your child stopped speaking, wouldn't look you in the eye, and completely ignored the world around them, what would you do?"
Being trained in the world of show business, I knew I had only seven minutes in this first segment to tell my story. I kept telling myself, "Don't cry, don't cry. Tell your story, Jenny." I took a deep breath and began to speak publicly for the first time about the horrific events that had taken place in the past two years.
When we finally arrived at the hospital, the doctors told me that he had a febrile seizure, caused by a fever. I told the doctor, "You know, he doesn't really have a fever, so how does that play in the scenario?"
The doctor responded by saying, "Well, he could have been getting one."
That didn't make sense to me at all. I went home with my baby, thinking something was very wrong. I didn't know what it was, but everything inside of me was screaming that there had to be something more.
About three weeks after the initial seizure, Evan had a second episode. We were visiting Evan's grandparents when I noticed a kind of stoned look on his face. I passed him off to Grandma thinking he was just tired, but moments later his eyes rolled into the back of his head and I knew it was happening again. I frantically called 911 and put cold rags on him (which is what you do for febrile seizures). This seizure was different, though. His body wasn't convulsing this time, nor was he trying to breathe. Foam was coming out of his mouth and he began to turn pale. I put my hand on his chest and kept saying, "Stay with me, baby, stay with me."
Because there were no helicopters available, we had to transport Evan to the Los Angeles hospital by ambulance. It was a three-hour car ride and in that time he had another seizure. At the hospital he had seven more seizures within a seven-hour period and after two days of being there and wondering what was going on, they came to me with the diagnosis of epilepsy. My instinct was screaming, "There's more, there's more!" I decided to get a second opinion and met with one of the best neurologists in the world. He politely put his hand on me and said, "I'm sorry, your son has autism."
I died in that moment but my instincts told me that this man was right. All those beautiful characteristics that I thought were Evan—the hand flapping, the toe walking, the playing with door hinges and lining up toys—weren't Evan characteristics at all. Who was my son if he wasn't all these things? The neurologist saw the look on my face and said to me, "Hey, this is the same little boy you came in this room with. He's not any different. He's the same boy." I looked at the doctor and replied, "No, he's not. My son is trapped inside this label called autism and I'm gonna get him out."
I took a big deep breath and leaned back in my chair, though I knew the hard part was not over. I knew at home millions of mothers had been waiting years for what was coming in the segment after the commercial break. Mothers who have been silenced, mothers whose child's own pediatrician had called them stupid and ignorant, mothers who had been accused of causing their child's autism with their own negligence, mothers who had waited years for one person to break through in the media and say what they have been screaming for a whole decade. This wasn't my moment in the spotlight coming up. It was theirs. I was their voice and ready to speak on behalf of these amazing women.
"FIVE, FOUR, THREE, TWO, ONE."
When the red light on the camera came on and we were back on the air, Oprah asked me to explain why I think Evan became autistic. In that next moment I actually smiled. At first I couldn't believe I was smiling and I imagined watching that moment on TiVo, screaming at myself again and again, "Why are you smiling?" And then it clicked. Oprah was finally giving me the chance to speak about Evan's autism without being censored. That's why I cracked a smile: The truth was about to come out of my mouth.
"The statistics are one in one-fifty. I'd like to know what number will it take, what number does it have to be for everyone to start listening to what the mothers of children who have autism have been saying for years, which is ... We vaccinated our baby and SOMETHING happened. SOMETHING happened. Why won't anyone believe us?"
The audience began to clap that deep, sympathetic applause again. I looked around and saw tears on the faces of mothers who I knew had children affected with autism. It seemed as though their anger had been released in that brief moment.
Oprah finished with a statement from the CDC, which said there was no science to support the connection between vaccines and autism. I couldn't help but think, "Who needs science when I'm witnessing it every day in my own home? I watched it happen." I replied with all the love that I could muster in my heart. "At home, Evan is my science."
Oprah smiled warmly into the camera and then again cut to a commercial. As soon as I saw the red light on the camera go off, I leaped out of my chair and walked offstage to relax my pent-up nerves. I had just opened a giant can of worms and I wasn't sure what the reaction would be. I tossed my concerns aside and centered myself. Today was the first day that anyone was allowed to speak freely about vaccines, and Oprah was the first to allow it. It might have been news to some people, but mothers who have children on the autism spectrum know. People we told about the vaccine connection called us crazy and desperate to blame, but we've lived with our children and have watched them suffer. I could understand if only a few mothers were speaking out, but when millions of mothers are screaming that something happened when their child was vaccinated, I think it's time the world listened to what we have to say.
I sat back down and looked at Oprah. She smiled at me and I knew I had made her proud for speaking from my heart. I was excited about the upcoming segment because I was going to talk about recovery. I knew many people watching didn't know that children with autism can recover from it. Even people who have children with autism knew of no such thing. The hard part for me was knowing that the treatments I was about to discuss would cost people more money because insurance doesn't cover treatments for autism. But I had to say it. People needed to know this information, and pediatricians aren't offering it.
A doctor once said to me that if people don't believe in the gut-brain connection, then tell them to go try that theory in a bar. Order a drink and see what happens. I witnessed with my own son how food alters brain response. Within two weeks of starting the diet, Evan doubled his vocabulary and the foggy world he seemed to be trapped in suddenly lifted.
Oprah said I was going to hear a lot of backlash from people for whom the diet didn't or wouldn't work. I wanted to say, "Yes, I know and it hurts my heart on a level that no one could possibly understand. I walked in these moms' shoes. I know what it feels like to hope for a miracle, and it haunts me to this day knowing that for many, it wouldn't do anything except empty pockets. But I know for MANY children it will work. For the kids who are able to speak for the first time or smile for the first time because of the information I just shared with their parents, it was worth it." But my segment was coming to an end so I had to make a point quickly.
"I'm just a mom telling a story that resembles many other moms' stories. Our kids do get better. It's like chemotherapy. It doesn't work for every cancer victim, but you're gonna give it a try."
Oprah replied, "Yes I am."
As Oprah went to a commercial break I knew my work here was coming to a close. I shut my eyes and asked God if there was anything I needed to squeeze in because the last segment was coming up. I sat in silence for a moment as Oprah talked to Holly Robinson Peete. Then it hit me...
Sitting in my house while on the phone doing my preinterview for 20/20 I had what most people would call a breakdown. My boyfriend, Jim, called it a breakthrough, but the breakdown had to happen first.
I hung up the phone with the 20/20 producers and put my hand over my heart. It was beating fast, as though I had just run a marathon. I wasn't nervous about the interview and I didn't feel stressed out, so I couldn't understand where these heart palpitations were coming from. I stepped outside and took a few deep breaths, but it didn't help.
That night I decided to sleep in Evan's room with him. I thought that I might be sensing an upcoming seizure, as I had in the past. As I lay glued to him with my eyes wide open, the feeling in my chest got worse. I started to sweat and then I began to panic that something was terribly wrong with me. I ran to my good ol' computer and went to my favorite university: the University of Google. I searched for heart palpitations and it brought up anxiety and panic attacks. I sat back in my chair and realized that Google was right. I wasn't dying of a heart attack; I was simply having a panic attack. I couldn't believe that I had gone through the past two years—dealing with the emotional roller coaster of autism, watching Evan have seizures, and even watching him go into cardiac arrest—without ever having a panic attack. Why NOW when everything seemed okay?
I was just about to publish my book Louder Than Words, and I wondered if, on a subconscious level, I was scared out of my mind about telling the world for the first time about my experiences with Evan. I didn't think that was it, though. Don't get me wrong, I was scared but this was not the reason for my panic attacks. I went down the list of possible worries: Evan's health, my debt, my relationship. They all came back negative. Nothing resonated.
The next morning I woke up and looked at Evan sleeping sideways on the bed. His cute cheeks were smashed on my chest and he was looking up at me. He blinked his big blue eyes and said, "It's going to be a beautiful day."
I smiled back at him and said, "Yes, it is, Evan...a BEAUTIFUL day." I gave thanks for the words that came out of his mouth and then tickled him to tears. After I released him from the tickle machine, he ran to go play and my panic attack returned with a vengeance. "What the hell?" I thought.
I called Jim at his house. "Something is up and I can't get a grip. I can hardly breathe."
"What's bothering you?" he asked, and I said, "Nothing." He then told me to call my therapist. She was the woman who convinced me to get a divorce and I hadn't talked to her in two years. But I hung up from Jim and took his advice.
My therapist answered the phone and I explained to her what was going on. She paused for a moment and then said, "You have never dealt with the fact that you feel guilty for Evan's autism."
I was silent for a moment and then replied, "No, Evan's pediatrician is guilty for his autism."
She said, "You need to get in here. You have never dealt with this. It's always been about your ex or money or autism in general but never your guilt."
I didn't want to hear this. I wanted to get off the phone with her, so I quickly replied, "Okay, I'll call you next week to set something up." I hung up and sank into my chair completely stumped.
I stopped for a moment to giggle in my head. Growing up in the Midwest, I used to think only crazy people saw therapists and even though I've been in Hollywood for fourteen years, having a therapist still makes me laugh. I replied nonchalantly, "She said that I feel guilty for Evan's autism."
Jim stopped what he was doing and slowly looked at me. He stared at me and in that moment I felt naked. I looked into his eyes and saw for the first time that I had built these thick walls of defense around my heart. I knew love was capable of a lot, but I had no idea that the man standing in front of me would be the one to put the first crack in those walls. He softly said with the sweetest eyes, "You do feel guilty for Evan's autism."
He slowly walked over to me and held me. I know it might be confusing that any mom could feel guilty for her child's autism, but some do. Some moms feel that it must have been something in them that caused their perfect babies to be born with weak immune systems. Some moms worry that they didn't scream loudly enough when they had concerns about the vaccinations.
Two hours had gone by and I slowly lifted my head. I felt a sense of peace, but I also felt incredibly vulnerable and stupid for crying so hard. I always wanted to at least appear that I had all my shit together, that I was a strong woman who could handle anything that came my way, including autism. I wasn't sure Jim would admire this new girl who had just shown her bloody wounds. But when I told him how naked I felt, he told me, "I never loved you as much as I do in this moment. Right now." He told me to keep crying as things come up, and to my surprise, they kept coming up. The next morning I lay in bed and cried more, and this continued for at least four days. I felt stupid at times, but I couldn't keep it buried any longer. The well had opened and I had to release the emotion, any time and any place. I'd even cry my ass off on the side of the road.
I realized that when Evan was diagnosed I hadn't allowed myself to grieve. I cried but I didn't grieve the fear, guilt, anger, and resentment I had in me. I said to myself back then, "There is no time for me or my feelings. I need to focus on getting Evan better and that's that." Now that Evan was better, I realized I had never gone back to deal with my own pain over the diagnosis.
When the doctor first gave me Evan's diagnosis, I popped a Valium as soon as we got to the car. Drugs and alcohol take the pain away, but eventually the effect of the drugs wears off and the pain comes back. It's easy to become addicted to the drugs as the pain becomes more and more unbearable, but instead of turning to drugs I simply suppressed my pain. I was amazed that I had been completely unaware that this deep-rooted guilt existed in me. I believe that suppressed emotion causes disease, so the faster you start to FEEL, the faster you can HEAL. Sitting behind the wheel at a red light, crying my eyes out, I knew Mommy's healing had begun.
I looked out at the cameras and all the eager moms in the audience and realized it was the last segment. This was it. I said, "Don't feel guilty for your child's autism. It's not your fault. Stay focused on recovery and trust your instincts."
Oprah smiled and said, "And ONE SIZE DOES NOT FIT ALL!"
I wanted to leap over that chair and give her a big fat kiss, but I knew I'd probably never be asked to come back to the show, so I simply replied, "Yes, one size does not fit all."
The stagehand shouted, "We're out." The camera lights went dark and everyone started to get up.
I walked over to Oprah and said, "Thank you on behalf of thousands of moms for allowing me to speak our truth." She gave me a hug that was filled with love, warmth, and gratitude. I didn't have to tell her how profound this show was. She felt it. I walked back to my dressing room relieved and said a little prayer that my intention to offer hope, faith, and recovery for these families was successful.
Finally I called my segment producer on her cell phone, and she said, "The system crashed. After the show, there were 2,500 hits per second and it completely crashed the entire system." In a way, I wasn't at all surprised. I knew the show would have such an amazing impact, since no one until this point had spoken about vaccines and, more important, recovery! I had also talked about how the gluten-free, casein-free diet was helping kids with autism, a theory that has always been controversial. It would surely stir up some shit, and I was interested to see what people would be saying about the diet. I wanted to know if others across the country had tried it or any other therapies that might have led to their kids getting better.
Two days later oprah.com was working and I could finally read some of the e-mails that had been posted. Mom after mom reported similar improvements after changing their child's diet and trying other biomedical treatments like oxygen therapy and metals detoxification. I was so happy that the rest of the world would see now that Evan is not alone. Healing is a possibility for every child with autism. Hope, faith, recovery. What an awesome intention!
On my way to New York City to continue my press tour for Louder Than Words, I was really nervous. I knew Oprah was open-minded and understanding of everything I had to say, but I had a strange instinctual feeling that someone along this path was going to challenge me. I knew during the tour that the pain I had gone through with Evan's brave struggle would sometimes be overshadowed by the controversy of autism, but it was important to get the message out on a massive scale. I kept my heart open and knew that whatever happened would be for the best reason possible. But I had already experienced so much pain and I was hoping I wouldn't have to go through any more pain just for speaking the truth. I was about to find out that there were many moms like me who were made to feel stupid for speaking this truth, and I was going to be the one to knock down some walls.
Published with permission from Dutton, A member of Penguin Group (USA) Inc. All Rights Reserved.