Editor’s Note: This is the second story (the first was How Autism Happens: A Conversation with Kathryn Wolcott) in which parents tell how they watched their child develop autism – and Sheila Ealey has quite a story to tell. She lives in New Orleans, but, married to a military man, has moved around the country. She set up a school for special needs kids in New Orleans, in part to help her autistic son, Temple, but the day it was to open, Hurricane Katrina swept in. She relocated to Houston with thousands of others but is now back in New Orleans; the school, the Creative Learning Center of Louisiana, is thriving. I met Sheila at an autism conference in 2006, introduced by our mutual friend Brooke Potthast. With the news about the higher risk of autism in black males, and the CDC effort to hide it I remembered our conversation and Brooke helped me get in touch. The conversation starts with her son, Temple, and his twin, Lucinda, at a military hospital in Maryland for their one-year shots along with their older sister. If you want to participate, e-mail me at email@example.com.
Sheila: It was August 2, 2000 – my birthday – and Temple and Lucinda were almost 13 months
old. Leielani is only 15 months older. Lucinda can manage to get herself out of the triple stroller, she did not want the injection, and she was fighting tooth and nail not to have it. I looked down for just a moment -- the nurse had all the vaccinations lined up. She had the HIB, the DTaP and the MMR for each child. When I looked up after taking her twin sister up, she had given Temple both of the MMRs along with the DTaP and the HIB. The next morning, he was not responsive anymore. It took me until he was 18 months to get a finished diagnosis of autism for him.
Dan: When you say, “he was not responsive anymore,” how do you mean?
Sheila: He didn’t have language yet by that point, but he was walking. He walked exactly on his birthday July 12 of that year, and he was walking well. After the shot he stopped walking, he started crawling, he started banging his head against the wall, the floor, anything he could. He stopped imitating with his father, he was making no eye contact, and he didn’t want you to touch him or hold him.
Dan: That happened within a day?
Sheila: He cried so -- he cried, cried, cried the entire night. I called the doctors back because I caught the mistake right away, and the doctor who was on duty at that time said, “I’m going to call Merck and find out what to do.” But in the meantime the fever went up extraordinarily high. He said, “Give him Tylenol.” Which is what I did. The next morning when I went to his crib he wasn’t standing, rocking on his crib, calling for me, “Ma, ma, ma” to come get him. Nothing. Nothing. He was lying there looking in the ceiling. He looked gone. My baby was gone.
Dan: His sister didn’t have any of these problems?
Sheila: I refused to give her the vaccination, so she didn’t get it. We left. She is fine. She is learning three languages. She is doing extraordinarily well. Now it seemed that she did have a few issues from the vaccinations before, at 5 months. She had reflux, but outside of that she is absolutely fine. She doesn’t have any issues. But this child, Temple, was hit so hard. Language has not come back in. Before the shot, he wasn’t speaking in sentences -- he was just a year old -- but he would say “Mama,” stuff like that.
After this happened I started taking him to developmental specialists and they kept saying, “He is a boy. Sometimes boys are a little slower.” And I said, “Okay.” I came home, I decided to pack my bags and to move back to New Orleans because I had a pediatrician I had been dealing with for years for my older daughter. I asked her, “What is this? I have never seen this before,” because I didn’t know about autism. She said, “Sheila, I think your child has autism.” I said, “What? What is that?” The minute I took him to see a neurologist that she told me to take him to, he told me, “I’m sorry this child is so autistic, he has to have chronic autism.” When I asked him what that was he told me, “He had to be born with it.” I said, “I’m not sure -- this baby was just perfect and now … there was nothing wrong before.”
Let me tell you what else happened to me, Dan. After I went to Autism One, I was still living in Houston because we had lost everything to Katrina, but I had his records with me where the doctor had said that he had gotten a double dose of the MMR, and that they should call Merck, and Merck said he doesn’t need to be vaccinated for the MMR anymore.
We came home to New Orleans and we left those records locked up in the apartment. Someone went into our apartment and stole his records. They didn’t take anything but his record.
Dan: Oh Lord.
Sheila: Temple's records were stolen from our apartment. My partner in the school is a lawyer who worked at the time for [a new Orleans law firm]. When she returned in October of '05, by spring of '06 they fired her because they were representing Merck against me. Thanks to Congress, my case was thrown out. I also filed with the vaccine injury program and they dismissed my case because they said I needed a doctor who could without a doubt state that Temple was damaged due to the double dose of the MMR.
Dan: What do you think about this new report about the black males and the high risk and all that -- what does that make you think?