How Autism Happens: A Conversation With Sheila Ealey
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 protected]
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.
Thanks everyone. I appreciate the positive energy and warm thoughts.
Posted by: Sheila Ealey | September 17, 2014 at 09:40 AM
God bless you, you precious mama! I'm deeply saddened to hear Temple's story and thank you for speaking out and trying to protect children. Oh, how I wish we could have protected everyone all those years ago! I will not forget your story and your inspiring commitment to your children.
Posted by: ang | September 16, 2014 at 09:15 PM
My heart goes out to your family.
Posted by: Full Spectrum Mama | September 16, 2014 at 11:08 AM
"What is the mitochondrial cocktail? If it's oral supplements, maybe we could try it."
Mito cocktail consists of CoQ10, L-carnitine and alpha lipoic acid.
Posted by: no-vac | September 15, 2014 at 05:43 PM
Since you went to the level of getting a lawyer and her firm told her to stop there are two places that knew where to look for your records. Wow.
But even if that fact were not included this is one of the saddest stories I have heard of vaccine injury. It is appalling. And what you said about the mothers going to mosqito netting. I have wondered for years what happens to a baby in an area with low sanitation when he gets the exploding diapers my child got for YEARs after the MMR.
That "horrid" man Andrew Wakefield with his "crazy" theories saved my son from that bowel disease and our families sanity and almost put both baby wipes and Clorox wipes out of business . When my son was 6. But these families in Africa and other places what do they do? Where do they go? How do they keep a baby safe that threatens sanitation in an entire village? We have running hot water...If I couldn't have easily given my caked baby a Bath...
Posted by: Hold Journalists Liable for every child brain injured by vaccines | September 15, 2014 at 04:20 PM
Sheila, did the doctor who gave you the original records keep copies?
Posted by: Taximom5 | September 15, 2014 at 04:15 PM
Though I haven't heard before about a patient's medical records being stolen, I guess it doesn't surprise me. In _Blood Feud_ by Kathleen Sharp, a book about pharma whistleblower Mark Duxbury, the claim is that since the late 1980s pharmaceutical companies have employed former FBI executives, foreign agents and black-ops experts to guard their confidential information. Maybe that doesn't keep them busy 100% of the time.
And I remember Doug Bremner in _The Goose that Laid the Golden Egg_ talking about his home being broken into after he became involved in associating Accutane with suicide. Nothing taken, as I recall.
They have the wherewithal to do it if they want to.
Posted by: Carol | September 15, 2014 at 02:48 PM
Thank you, Shelia, for sharing your important experience. Obviously your son's medical records were worth a lot to someone, maybe several someones.
The medical error and your son's reaction should constitute a case report that would at the very least call for more investigation of MMR autism related related risk and probably the establishment of vaccine administration procedures designed to prevent mixing up vaccines for multiple patients. And of course your son should have had immediate compensation from those involved. Hospitals compensate for drug overdose all the time, though possibly they do what they can to get out of such responsibility all the time as well.
But apparently vaccines are extra special and in today's vaccine world an administration error followed by immediate reaction apparently justifies theft (people shouldn't laugh off your experience, but sit down and think about what the theft or your records means for you and the safety of their own), denial, complete injustice, and in a CDC study would likely disqualify your son from inclusion because the "higher exposure groups had higher outcomes" or something like that.
I hope your story is soon met with serious reflection and efforts to bring about compensation by most. I don't know how much to expect from our highly propagandized neighbors, and sometimes I wonder if we're all by and large medically/environmentally compromised in intellect, but I hope more are waking up.
Posted by: Jeannette Bishop | September 15, 2014 at 02:28 PM
What is the mitochondrial cocktail? If it's oral supplements, maybe we could try it.
Posted by: cia parker | September 15, 2014 at 01:12 PM
Time to approach the publisher about the expanded second edition.
Or volume II.
Posted by: Linda1 | September 15, 2014 at 12:19 PM
Theresa, "how autism happens" is a key component of the stories in the book Thinking Moms' Revolution: Autism Beyond the Spectrum, and Team TMR: Evolution Of A Revolution: From Hope to Healing. One of the concerns we had was that the story was a bit repetitive, but at the same time I think it's a strength of the book. It is impossible to read over and over and over again and continue to think, "It's all just a coincidence of timing."
Posted by: Zoey O'Toole | September 15, 2014 at 11:32 AM
Beth, we were a military family at that time and back then whenever a transfer of duty happened, they gave you your records to take with you which were the originals.
Posted by: Sheila Ealey | September 15, 2014 at 11:18 AM
Heartbreaking! I hope you will continue to tell your story far and wide.
Posted by: Twyla | September 15, 2014 at 11:09 AM
I hope this story travels far and wide. It's obvious that the powers that be do not value Temple's life, and they dismiss his vaccine reaction as coincidence despite his radical transformation happening that very day, immediately upon the vaccines being given to him.
Every life matters, and the harsh reality is that vaccines equate to human sacrifice for some.
My thoughts and prayers go out to Temple and his dear mother for enduring the nightmare that is public health policy in America.
Posted by: End Human Sacrifice to Almighty Vaccines | September 15, 2014 at 10:49 AM
Thank you for telling your story, Sheila. It is an amazing story. Every story may include vaccine injury -- but they all are different like two of the same shots in the same day does not end as well as fiction - example would be "Pearl Harbor" when Ben Affleck took two vaccines to get to know his nurse, just fainted but then was up and at them well come to think of it - his girlfriend nurse had her baby with his best friend -- and not him - hmmmmm.
I am off topic -- sorry --on top of that records stolen and nothing else, at one time I would have blown a raspberry at that -- but now I don't thinks so. I believe girl!
Even if everything was stolen -- what druggy thief wants medical records. Take if from me -- I am an expert at what they want I've been robbed four times, my parents robbed 5 times -three were attempted after they broke out the glass and my Dad was standing there watching them. Both of my next door neighbors were robbed; as have most of my larger neighborhood. It is getting so - that if you have not been robbed we are suspcious of you.
We all have a neighborhood watch going on here - and we live out in a farming community. High crime and farming communities --really go together don't the.
But anyway What theives want are tools -hand or power - easily sold at pawn shops, guns and knives - again easily sold, and jewelry - easily sold, along with TVs and electronic equipment, power washers -- Pawn shop stuff mostly. -- Oh and any type of metal be in on power lines, outside air conditioning units, electric wiring in a empty house - rail road - rails -- and now that cattle are high - they recently drew some cattle into a barn with promise of food - I suppose they planned to come back with a trailer and get them - but since they had no trailor - well the cattle was locked in a hot barn and died.
So what would they want with medical records, and not even smart enough to steal anything else to try to cover it up. No wait; they are not even concerned enough to cover it up - they just label her as crazy -
Posted by: Benedetta | September 15, 2014 at 10:12 AM
maybe we should compile a book " How autism happens" With all of our stories. Might get the word out a little. Of course, most of the "happens" would be vaccines, so a bit repetitive.
Posted by: theresa 66 | September 15, 2014 at 09:10 AM
Sheila- can't your pediatrician (who gave the shots) give you another copy of Temple's records? Unless you are like some military families who were given the original records to take with you. This burglary is very sinister.
Posted by: beth johnson | September 15, 2014 at 08:42 AM
Hi, I have a daughter who is vaccine injured. I came to live in US from India and soon my daughter was born and the rest is a horror story. ...
Posted by: Mbh | September 15, 2014 at 07:14 AM
So much for Paul Offit's 10,000 vaccines!
Posted by: John Stone | September 15, 2014 at 06:41 AM