updated 09/20/2007 AT 10:00 AM ET
•originally published 09/20/2007 AT 12:00 PM ET
For years Jenny McCarthy promoted herself as an uninhibited good-time girl – Playboy Playmate, raunchy comic actress, author of frankly funny books on pregnancy and motherhood. But she was just another terrified mom in 2004 when her son Evan, then 2 1/2, suffered a series of life-threatening seizures – and was eventually diagnosed with autism. “Holding my convulsing baby as he tried to breathe,” recalls McCarthy, 34. “From that day on, I was not who I was before.”
What she became was single-minded in her quest to find help for Evan, an odyssey she recounts in Louder Than Words: A Mother’s Journey in Healing Autism. It’s a story of endless doctor visits, hours of Internet searches (“the University of Google,” McCarthy calls it) and a marriage – to actor-director John Asher – strained beyond repair. But ultimately, McCarthy says, “my story is about hope.”
Indeed, after rigorous therapy at UCLA and some controversial alternative treatments – including removing wheat, dairy, yeast and sugar from his diet – Evan, now 5, is vastly improved. Though he remains on anti-seizure medication, “he’s in a typical school – he’s incredibly social,” says McCarthy. Cured? “I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”
In an excerpt from her book and an interview with West Coast Deputy Bureau Chief Bryan Alexander (to whom she also opens up about the new man in her life, Jim Carrey), Evan’s mother recalls their journey.
I started running toward his room and threw open his door. The sound I heard will be imprinted on my soul forever: my son struggling to breathe. I ran to the crib, grabbed him and started screaming, “Something is wrong with Evan. Oh my God, help me!” I ran his limp body into the living room while his father, John, leaped to call 911. I ripped off his clothes while he convulsed and wheezed. I put my lips next to his ear and said, “Stay with me, baby, stay with me. Mama’s here.”
Finally, after the longest fourteen minutes in my life, I saw paramedics walking up my driveway. I ran out and screamed, “Run!” They picked up the pace; I heard one of them say “seizure.”
That morning was the start of a terrifying medical odyssey. Diagnosed with epilepsy, Evan had frequent seizures; the drugs doctors tried left him alternately manic, spouting gibberish and nearly comatose. Frantic and convinced epilepsy wasn’t the whole story, McCarthy made an appointment with a UCLA neurologist in 2005.
I had to shoot a For Him Magazine layout that day. I gave them the best cleavage shots ever just to get out of there. I kept thinking: “If only people knew how incredibly sad I am about my sick boy, they would think I am the best actress in the world.” Moms gotta do what moms gotta do.
I threw on sweats and raced to the doctor’s office with Evan. A sweet older man walked in. I started telling him about the seizures; he listened closely but had his eyes on Evan. Then he pulled his chair up to mine and put his hand on my hand. He looked at me with sorrowful eyes and said, “I’m sorry, your son has autism.”
I felt each membrane and vein in my heart shattering. I looked at the doctor with pleading, tearful eyes. “This can’t be. He is loving and sweet and not anything like Rain Man. How can you tell after only a few minutes”?
He pointed to the corner. Evan had taken those cones doctors use to look in your ears and made a perfect row.
“Does he line up toys at home instead of play with them”?
“Yes, but don’t all kids do that”?
“Nope,” he said. “And they all don’t flap like that either. That is a stim – a self-stimulatory behavior. It’s an autistic trait.” He also told me 30 percent of autistic kids suffer from seizures.
Looking back, little signs had presented themselves, but I looked past them. In playgroups I’d watch bullies whisk Evan’s ducky away. Evan just sat there. I remember thinking, “Look how sweet my angel is, he didn’t even mind that his toy was ripped out of his hands.” When he would flap his hands, I thought it was so cute. People would comment, and I would say, “Yep, he’s gonna fly south for the winter any moment now.”
He had a fascination with door hinges – I told people he was going to be a mechanic. At the mall, he and I had to ride the escalators 100 times. And my friends were amazed that he could sing an entire Dave Matthews song and not miss a word. I thought I’d given birth to somewhat of a genius. But he had very little “original” speech.
After the diagnosis, I couldn’t lie in bed and cry. Instead, I had to promote my book Baby Laughs. Yes, I had to do a week of comedy about my baby, to sell this book, so I could pay for his autism. I know people like to think celebrities are immune from problems. Don’t let designer shoes fool you.
At Live With Regis and Kelly, Kelly said, “How’s your baby boy doing”? It made me want to cry, but I couldn’t. “Really great!” I replied. I immediately went into a joke.
Coming home a week later, I could tell Evan was happy by the amount of flapping going on. Only now I knew it wasn’t a cute thing.
Soon afterward, she got a call from Holly Robinson Peete, whose son Rodney, now 9, is autistic. "There is this window of time," Peete told her. "If he aggressively gets treatment, you can pull him out of autism." McCarthy made an appointment at the UCLA Early Childhood Partial Hospitalization Program, an autism treatment center.
That day I put Evan in his best outfit. I thought if he looked adorable, people would see past any of the “flaws.”
“Evan, can you point to your feet”? the therapist said. Evan looked into space. “What does a cow say”? asked the therapist. Evan stared at her blankly.
“This is crazy!” I said. “He has a cow stuffed animal and says ‘moo’ all the time.”
“He might very well know the cow says ‘moo.’ However when asked, ‘What does a cow say?’ he doesn’t understand.… Is he affectionate”?
Time stood still. I wanted to reply “All the time, he hugs me and gives me kisses.” But he didn’t. I honestly had never noticed. I answered, “Does he show love? He is love. I feel it every day.” The therapist looked confused.
There was a waiting list for the UCLA program, and for other programs McCarthy found. As the weeks went by, her marriage grew more strained.
John was starting to get angry at me because he felt ignored. The only fantasies I wanted to imagine were Evan being able to say, “I love you, Mommy.” I didn’t care if I never had sex again.
While I waited for services, I decided to educate myself on diet. I read that after beginning a gluten and casein-free (wheat- and dairy-free) diet, mothers reported huge changes in their autistic children. I asked Evan’s pediatrician. “Another desperate attempt at healing autism,” he said. All I knew was if there was hope in anything, I was going to try. I’m pretty grounded, but when you have a sick kid, you would cut off a chicken’s head if you thought it would cure him.
She removed wheat and dairy from Evan’s diet; he seemed more responsive and was speaking in full sentences.
I received a call from the UCLA program, saying Evan could begin soon. Months had passed since his evaluation, and I was hoping the therapists would see a difference. At the end of his first day, I was approached by a therapist, who said, “Is this evaluation correct? It says here that he couldn’t point to his feet or nose, and he did both without a problem today. That’s a pretty great improvement.” Victory! Her marriage, though, was crumbling. At Jenny’s request, John moved out.
As John packed up, I looked at Evan. It was the only moment I was actually grateful for autism. Even when John said, “Daddy’s moving into a different house,” Evan just stared off.
Evan’s progress at the UCLA program was nothing short of miraculous. He was up to six-word sentences, had mastered “yes” and “no,” and showed interest in his peers.[After he completed the program] I called agencies that did in-home therapy and asked how much it cost. Most replied, “$75 an hour …so that would be $2,250 a week.”
Placed on a yearlong waiting list for state funding, she chose to pay herself.
I sank into my chair. I had taken out a second loan on my house, so I could cover it for now. When I talked to other families, the story was the same: They’d refinanced their house or borrowed money. Just know if I ever come out with my own dumb perfume line, this is why.
Evan began in-home behavioral and speech therapy, plus an array of non-traditional treatments. He continued to improve. She also experienced a dramatic life change: She met Jim Carrey.
It had been a few months since John left, and I felt lonely. One night I went to a party. I wasn’t sure about a relationship because Evan’s needs were so demanding. But as fate would have it, I was introduced to this really cute guy. There was something so beautiful in his energy. He was surprised I wasn’t the outrageous chick who beat up boys on MTV. I gave him my number; he asked me to come over and watch a movie. I went with the hope of some nice small talk and maybe a killer make-out session. It turned out to be exactly that.
In the following weeks, Evan was starting to act a little more kooky. He had developed a bad obsessive-compulsive disorder that experts say happens with a lot of autistic children. One day, he wouldn’t stop screaming until all the doors in the house were closed. I called my agents and told them I would be taking some time off. Until I could get Evan healthy again, I couldn’t play mom and actress. Sadly, I also knew I couldn’t play girlfriend.
I went over to the cute boy’s house and cried all over his shirt. I told him that I couldn’t be with him at this time but hoped someday in the future we would cross paths again. In her continuing quest for alternative treatments, McCarthy found doctors who prescribed antifungal drugs to remove yeast from Evan’s intestines. His compulsions seemed to lessen.
Two weeks into this, I was watching Sponge Bob with Evan, when the most amazing thing happened. He giggled at a joke. My body went into shock. Then it happened again. I started screaming. It was such an abstract joke that I knew it meant he was no longer in a confused daze, but was growing mentally and emotionally.
Evan’s therapist couldn’t believe the burst of development. He was social and for the first time wanted hugs from Mama! Words can’t describe the feeling of your baby wanting to be held after years of rejection.
It had been a few months since I had walked away from that cute boy. I decided to text him. I must have practiced “Hey, how are ya”? 80,000 times.
Finally, I sent, “Hey, it’s Jenny. Is there still room on your sofa, or has my seat been filled”? TICK-TOCK-TICK-TOCK Finally I heard a beep-beep. “Your seat will always be here.” I went over to his house. It felt so good to be back in his arms; I felt cared for.
A therapist came to her house to determine whether Evan still qualified for state-funded therapy.
“Evan,” she asked, “can you tell me where this train goes? In the bowl with the airplanes, or the bowl with the animals”? Evan replied, “It goes here,” and threw it in the bowl of vehicles. Then he said, “I went on an airplane. I went to Canada and saw deer and Santa. Then we went in Mama’s trailer and I played with the fans and ate chips while Mama worked.”
The woman slowly looked up at me and said, “What’s going on”?
Now, Evan still repeats words a few times and flaps his arms, but he’s no longer stuck in the world of autism. For the most part, you would never be able to pick him out of a crowd as being a little unique. He is now 5, and since he is able to completely communicate, I ask him questions I so badly wanted the answers to. When I asked him why he flapped his arms, he replied, “Because I get SO EXCITED, and then I fly just like the angels do.” How can I argue with that?
Excerpted from Louder Than Words by Jenny McCarthy published by Dutton, a member of Penguin Group (USA) Inc. © 2007 by Jenny McCarthy.