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 firstname.lastname@example.org.
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?
Sheila: It validates what I’ve always thought. I’ve seen so many black children with autism since I’ve been back with this school. I’ve seen so many black male children misdiagnosed and I’ve had to tell them, “Wait a minute, go back to the doctor. Your child -- he has autism.” I’ve seen so many of them.
The majority of the African-American families I know with children with autism are middle/upper class families. They are educated people like my husband and myself. We believed stupidly in our government and forgot about the many medical atrocities we learned of from our grandparents about how never to trust doctors, because of the Tuskegee experiment, etc.
This government historically hasn't given 2 cents about an African-American child. I should know. While my husband was active duty I watched other families get the treatment their child needed, ABA for one, while we were told our command had to approve it, which they NEVER did. I also watched how the many doctors I took Temple to in hopes of some professional saying that he didn't have autism, quickly give me that diagnosis and prefaced it with saying he will be institutionalized before his teens because of the severity of his condition. Oh, and the best comment to date---"EXPECT NOTHING from this child. He will NEVER get better. Just find a good institution to place him in and go live your lives."
Dan: How is your son doing these days?
It’s been an uphill battle for Temple, and I don’t know what the future will hold for my son, I just feel fortunate that he is still living. Developmentally he is about maybe six years old at 15, he can’t even cross the street properly. He still can’t write because of the damage that is done. I shouldn’t say he can’t write, he can now hold a pencil and his writing is very primitive, because he has only been on the mitochondrial cocktail for the last two years, but he has really been on the high dose -- after I fought the insurance company to pay that $18,000 a month -- for about 18 months. (He was diagnosed with mito disorder.)
Dan: Did you tell people at the time about the double MMR shot and then about the burglary of Temple’s records from your home?
Sheila: I told everybody. I’ve been labeled as a fanatical crazy mom, I don’t care, but I’ve known all along it was that double dose of the MMR. I’ve seen so many doctors for this child, I’ve taken him everywhere and I’ve had some of the best doctors tell me it’s something more. I don’t know what it is, but what’s going on with him it’s not typical for other children with autism. I guess that if he got two shots of the MMR on the same day, that increased his risk even more.
I read about mothers in Africa who would use mosquito nets. They went to get the MMR and they were given a free mosquito net. Then they would go to another village a month later to get another mosquito net because they couldn’t get more than one, and would get another MMR, and a lot of those children died. After reading that article I felt fortunate that he didn’t die.
Dan: Yeah, that is true.
Sheila: He has serious damage, and what I don’t know is, did his mitochondrial damage occur because of that vaccination? I’m willing to say yeah.
Dan: I would think so.
Sheila: I didn’t want those vaccinations and I don’t know why. It wasn’t because I didn’t trust the government at the time, because I have an older daughter that will be 34 in October. When she was little, there were only a few vaccinations and they happened at birth. When I had this set of kids I had no idea about the number of vaccinations, so I did trust the government, but this is what happened to me. There are a higher number of autistic children in the military, and we were in the military at the time, and they kept calling me and calling me and calling me to come in and get the vaccination for the kids.
When Temple was 5 months old, before I left New Orleans, he got vaccinated and he had such a bad reaction to them. I took him to the emergency room three or four times, his fever was off the chart. I was so worried. They kept telling me, “Give him Tylenol. Give him Tylenol.” That’s what I did and it went away and he seemed to be doing fine. At 12 months his fate was sealed.
I’m glad you called me. I don’t know what else to do, but there’s got to be something that I can do for my son. He deserves justice for what’s going on. My husband had retired that March of ’05 and started his own business. But I’m going to tell you we spend the money on him, because to me at the end of the day money will mean nothing 15 years from now if I haven’t done all that I could for him.
His life has been pretty much robbed from him. To me, that’s how I feel about it.
Dan Olmsted is Editor of Age of Autism.