Of seizures and celebrity: Evan’s grandmother speaks up

 Reposted from Autism News Beat:

Jenny McCarthy is the face of vaccine rejectionism in America. The story she tells of how her son, Evan, became autistic after his MMR shot is arguably the origin myth for the anti-vaccine movement, and the legions of  “Warrior Mothers” who follow her. Now, a competing narrative from someone else close to Evan calls the myth into question.
“I have such tremendous guilt for not speaking up when I knew something wasn’t right,” says Joyce Bulifant, Evan’s paternal grandmother. “But I was afraid of Jenny, and didn’t want to be the interfering mother-in-law. I was more concerned about me than taking care of Evan.” She agreed to speak with AutismNewsBeat.
McCarthy’s many critics have pointed to her numerous contradictions. She told Oprah Winfrey, for example, and there is “no doubt in my mind” that the MMR vaccine caused her son Evan’s autism. But she has also written that Evan showed signs of delay by six months – one year before the shot.
“I don’t think she’s very fond of me, but I love her because she is Evan’s mother. It makes me sad that we don’t have a true relationship,” says Bulifant. “That makes me very sad.”

The elf on the shelf
Bulifant is no stranger to Hollywood. The Virginia native has been acting for more than 50 years, and is well known for playing Murray Slaughter’s wife, Marie, on the Mary Tyler Moore Show. She was also a regular on The Match Game, and appeared in Airplane! (1980). She lives in Palm Springs with her fourth husband, actor and composer Roger Perry. Joyce has 15 grandchildren, and they all call her LaLa. When she speaks of Evan, who was born in May, 2002, it’s easy to imagine he is the favorite.
“Evan was here for Thanksgiving, and he left a note on my fridge that I just can’t take down. It reads ‘Dear LaLa, I hope that you love me so much. Thanks, Evan. I love you to the moon and back.
P.S., the Elf is in the freezer with turkey.”
The elf is a small, felt doll that sits on a shelf.
“He used to be afraid of the Elf on the Shelf, but last year he started moving it around the house, hiding it in different places and making it reappear. He said it had magical powers,” says Bulifant. “I love playing magic with him. He’s so very dear. It’s like he has a sixth sense that I don’t have.”
That sixth sense sparks her sense of wonder. “I am dyslexic and so is my son (Evan’s father, John),” she says. “We do compensate when we don’t have all the typical skills. The compensation part fascinates me. T
o me Evan is magical and wonderful and I love him to death.”
Bulifant’s conversation is sprinkled with sweet and simple stories about the boy she loves.  One time at L.A.’s Getty Museum, she said, Bulifant and Evan were throwing quarters into a fountain to make a wish
“I wish you would always love me,” said Evan.
“I wish you would always love me,” she said.
“LaLa, that’s my wish!”
Bulifant said she was concerned about Evan’s months before his first birthday.

As “Marie” on The Mary Tyler Moore Show

“I remember Christmas, 2002 (age seven months). I was bathing him in the sink, and trying to get him to giggle and respond to me, but he seemed detached. My family was a little concerned but I didn’t say anything to Jenny because I know children develop at different times. But I was concerned.”
And then there was the incident in the park, another example of how difficult it is to see autism in a loved one.
“We took him to the park, and he started running away from us. We called, but he didn’t even turn around. We wondered if his hearing was impaired,” she says. “That didn’t seem right. So I was testing him in the car seat on the way home. ‘Where is your nose? Where are your ears?’ I asked Evan. He didn’t respond, and I wondered what was going on. Then, when we pulled up in the driveway, Evan suddenly pointed to his mouth and said ‘mouth’, and then he pointed to his ears and said ‘ears.’ It was like he was saying ‘Silly gramma, I know where my mouth and my ears are!’”
Joyce has been active in dyslexia education and advocacy for years, and she called on her research contacts for help. “By the time Evan was 18 months old, I was convinced he had autism,” she says.
Bulifant was wary of approaching McCarthy, who had written two books by that time that made it clear she didn’t appreciate parenting advice from others.
“She wrote ‘I don’t want anyone telling me what to do as a mother,’” says Bulifant. “I was trying to be a good mother-in-law and a good grandmother at the same time. I don’t think I even said anything to John. Everything I read pointed to autism.”
One day, while John was off directing in North Carolina, and Bulifant was staying at Jenny’s Los Angeles home, the “Good Grandmother” spoke up, and asked the nanny about Evan’s development. The nanny reacted defensively.
“I want to ask you something. Have you noticed that Evan doesn’t always connect with me?“ asked Bulifant.
“Jenny is a wonderful mother and he always connects with me.”
“He does watch a lot of television, ” said Bulifant, “and I’m wondering if that means he’s not used to interacting.”
“Evan is fine and always interacts with me. “
Bulifant retreated. “I thought maybe I was just me being a silly grandmother.”
She and her husband left the house for a few hours, and when they came back nobody was home.
“I was terrified that something had happened to Evan.” Then John called, and said that Jenny was “very upset “about the conversation with the nanny.
“You just can’t say anything about Evan,” John continued. “She gets very upset.” He said McCarthy would not come back home until Bulifant and her husband left the house.
Which they did.
Back home, Bulifant wrote a letter of apology to McCarthy. “Jenny wrote back saying ‘You shouldn’t have said anything to the nanny. You should have said it to me.’ And she was right, I should have. I was just afraid. I didn’t want to be the interfering mother-in-law.
“It was very wrong, and that is something I have to live with,” says Bulifant.
McCarthy has told a similar story:

Others had noticed something different about Evan, too. “My mother-in-law said, ‘He doesn’t really show affection,’ and I threw her out of the house,” Jenny says. “I went to a play gym, and the woman [there] said, ‘Does your son have a brain problem?’ … [I said], ‘How dare you say something about my child? I love him. He’s perfect. You can’t say that about a child.’ I just had no idea.”

Bulifant says that after being “thrown out of the house,” she and McCarthy have only spoken a few times, and for the last two years have communicated only through occasional texts.

Seizures and celebrity
Evan’s autism, and Bulifant’s collision with McCarthy’s “strong personality” created another issue. It’s what she calls her “moral problem” for not speaking up sooner about McCarthy’s well-publicized anti-vaccine views. “I know enough about Evan that if I spoke up sooner, more kids would be vaccinated, and fewer would have died or gotten very sick. We’ve seen cases of measles in Texas, and whooping cough killed ten children in California. It breaks my heart. That’s the biggest moral issue in my whole life,” she says.
Vaccines are at the center of McCarthy’s shifting narrative. In one version she says “the soul was gone from Evan’s eyes” shortly after the boy’s MMR vaccine. Here is what she told Oprah in September, 2007:

“Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.”

McCarthy’s narrative also includes two seizure episodes suffered by Evan, leading to an autism diagnosis. In Belly Laughs, she wrote Evan was diagnosed with a febrile seizure at 2 ½, and three weeks later, he suffered seizures which led to a cardiac arrest, and a diagnosis of epilepsy. By this telling, stereotypical autistic behaviors followed.
Bulifant says the first seizure came in the spring of 2004. Oddly, the news triggered in her a sense of relief.
“I knew that seizures are associated with autism, and that Evan would finally get the diagnosis he needed and finally get help. I wasn’t alarmed.”
The second seizure occurred the evening before Easter Sunday, in Bulifant’s home. “I had an Easter basket for Evan,” she says.
“It was the night before Easter. Evan was so tired that he fell into my arms. I laid him on his bed and took off his shoes and when I looked at him I saw his little eyes rolled into the back of his head. I yelled for John to come quickly. We called 911. John held Evan’s hand and said ‘Don’t worry, you are in a safe place.”
Paramedics arrived. “Jenny was a mess. I now know what ‘wringing your hands mean’, because that’s what I was doing.” The EMTs “bagged” the boy because his breathing was shallow, says Bulifant, then took him to the local emergency room. Jenny rode in the ambulance. Anxious hours followed in the waiting room while doctors stabilized Evan and then allowed family to visit.
Evan’s first words were “Look at that air conditioning vent.”
Jenny and John left Palm Springs with Evan and drove straight to Cedars Sinai Hospital in LA, where he was diagnosed with epilepsy. Joyce felt like screaming – “No, it’s autism!” She had had enough.
“I said to John ‘I now insist that you go to UCLA to see a neurologist.’” By McCarthy’s telling, it took the neurologist 20 minutes to arrive at a diagnosis.
A September, 2007 People Magazine article is typical of how McCarthy tells the story:

This was another seizure, she thought, “but this one is different. He’s not convulsing.” Instead, “foam was coming out of his mouth, (and) and after a few minutes, I felt his heart stop,” she said.
When the paramedics arrived, she told them about Evan’s heart. “They looked at me like I was crazy. I don’t know why,” she said. Only, as they discovered for themselves, the child’s heart was no longer beating, so they administered CPR.
“Why, God? Why me … Why? Why? Why?” McCarthy recalled thinking in those desperate moments, but then, she said, an inner voice came over her. “Everything’s going to come out okay.”
Because there was no pediatric hospital near her parents’ home, Evan and McCarthy drove three hours back to Los Angeles, during which time Evan suffered several more seizures.

Dramatic effect
Another unfortunate dimension to McCarthy’s assault on children’s health is her endorsement of unproven, costly, and potentially harmful alternative therapies for autism. She is front and center at the annual AutismOne conference, where speakers have recommended bleach enemas and chemical castration. Her charitable foundation, Generation Rescue, actively promotes  “a wealth of biomedical therapies that treat the underlying issues of autism inside the body.” These include chelation, hyperbaric oxygen, anti-fungals, anti-virals, and cannabis.
When asked what she thinks of the autism cure industry that Jenny has captained, Bulifant demurs. “I think there is value in eating right and exercise for all children,” she says, her voice trailing off.
But what about telling autistic children they are vaccine injured, or that the soul has been sucked from their eyes? Jenny and her angry mob, as she has called her followers, regularly describe their children as train wrecks, zombies, and worse.
“Jenny says things for dramatic effect,” says Bulifant “I don’t understand that type of thinking. Evan is incredible. One of our favorite things to do is to go looking for lizards. He spots them where I can never see them. I ask him ‘How did you even begin to see that?’”
Still, Bulifant doesn’t hesitate to describe McCarthy as “a very good mother, very caring and trying to do the best for Evan,” adding “I don’t know why she says those things.” She describes her son as good father, and regrets how John has been portrayed as distant and uncaring.
“John never spoke up when Jenny said unkind things about him. I asked him why, and he said it would turn into another ‘Hollywood he said – she said’, and that he wanted to be a gentleman about it, and didn’t want to hurt Evan.”
Does she worry that Evan may one day think he lost his soul to autism?
“I hope that Evan never realizes the things have been said about him. I just don’t want him to ever be hurt. I don’t know if he will ever realize what has been said about him. I hope not.”
Bulifant tries to expose her magical grandson to the arts whenever possible. “I took him to see Billy Elliot, and he loved that. His little mind is working all the time. ”But those bonding opportunities have dwindled since McCarthy moved to the Chicago suburb of Geneva last year. Now, Bulifant watches The View to see new pictures of Evan, and to hear the latest stories.
“Jenny is doing well on The View,” she says.
- by Ken Reibel

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Update from Joyce Bulifant:

I understand and have great empathy for parents of autistic children who want to know the reason for their children’s autism. They understandably latch onto anything they can find as a reason. That might be what Jenny did when Dr. Wakefield gave incorrect information about vaccines. I don’t think she did this maliciously. She just needed a reason.

If people know Evan showed signs of autism before his MMR vaccine, parents wouldn’t be afraid to vaccinate their children, thereby saving lives and much suffering.