At Autism One in 2011 I was asked to fill in for Louise Kuo Habakus on the Human Rights Panel which was the most exciting thing that’s happened to me since my life took a nosedive into Autism six years ago. I loved the book Vaccine Epidemic edited by Louise Kuo Habakus, MA and Mary Holland, JD and I was deeply honored to be asked to participate on this panel with Mary Holland, Kim Mack Rosenberg, JD and James Turner, JD. I haven’t spoken in front of a room full of people for over ten years, so I was really nervous. The podium was on wheels and I was gripping it so hard I almost pushed it right off the riser sending me into the audience ass over teacups. Thankfully I found my nerve and there isn’t a warmer group to speak in front of than Autism parents. I hope I will get to meet you at Autism One this year and I hope you will join me in attending the Advocacy Track presentations http://www.autismone.org/content/advocacy-track. This is an excerpt from the talk I gave last year.
Human Rights Panel Autism One 2011
I am the mother of two children, one of whom, was severely injured by his vaccines. When I tell people that my son Nick was injured by his vaccines they’ll often say “are you sure?” This really strikes me because if I had been standing on a side walk and Nick had rushed into the street and been badly hit by a car, no one would ever doubt me when I told them. Yet my experience as a witness to his regression after vaccination is frequently discounted.
As well as a mother, I am also a psychotherapist. I have been practicing psychotherapy for 17 years and in that time I have worked extensively with survivors of trauma. There are some striking parallels to the experience of a trauma survivor and that of the family of a vaccine injured child. I am in no way equating a vaccine injury with sexual abuse. However, in both situations there is the inclination not to believe the victim, or in our case, the parents. They call this Secondary Traumatization. In this situation the survivor is not only having their reality invalidated, but they are essentially also being accused of lying. In situations of rape the evidence is often mishandled, lost, or not collected quickly enough. This bungling of evidence frequently undoes any legal recourse the victim may have, and removes the concrete proof the victim will need to cling to, as they try to make sense of their own muddled memories. There is often an artificial statute of limitations. Finally, there is a sense that the victim should already be over it.
As parents of vaccine injured children, we are not believed, our children do not receive quick, definitive lab work as they are regressing or shortly after an adverse event, and we all know that the statute of limitations on our grief, like that of the vaccine court, is far too short.
When a child has an adverse reaction to a vaccine the parents are the first responders. Yet unlike a crime scene when the detective arrives, or in our case we get the child to medical attention, the doctor most frequently doesn’t believe us. We explain; we took a healthy child in for routine shots, we took them home and perhaps immediately, within days, or within several weeks, which was our case, our child has disintegrated before our eyes…A + B = C. We are told “No, it didn’t happen.” Now because we are being talked out of what we saw with our own eyes, confusion sets in. When we add to this the ‘doctor as God’ complex and the sexism still rampant in medicine today, mothers often feel bullied. This creates the kind of psychic dissonance that is so much a part of trauma. Add to that the exhaustion of caring for the incessantly screaming child, the worry, the grief, the rage… and you feel crazy.
When my son regressed into Autism I felt like I lost all solid ground as a mother. I didn’t trust myself, I couldn’t find my center. I couldn’t connect back with the certain, nurturing person I had been just a month before. If what I had seen hadn’t happened then I didn’t know anything anymore. This kind of disconnection to self is also a classic symptom of trauma. At that time, Nick was about 2 years old, I found myself watching him like a scientist would, collecting data on his first signs, that turned into sounds and then the first words to come back. I wasn’t mothering him from my heart, although I loved him dearly. I was mothering him from my head. I had seen his regression after vaccination and yet I was told by his doctors that his autism “had just occurred as it does in kids between the ages of 15-18 months”. This was so different from what I had seen with my own eyes and experienced viscerally in his feral screams and failing body that I no longer trusted my instincts. I was as disoriented as he was.
There are parallels for us in the healing stories of other victims as well. Like the trauma survivor, when we begin to speak our truth, first timidly and down the road with confidence, we move from victims of our experience to survivors. Where does the confidence to speak up come from? From feeling encircled by others who have been through the same thing and from being believed.
I went to the Green the Vaccines Rally. In the cab back to the airport after the Rally I called my husband. I said “Honey this really happened. I just stood with 8,000 parents with the same story. We’re not crazy.”
Then we began the work of healing Nick’s very sick little body and I felt in tune again both with him and with myself.
I don’t know how much of the damage done to Nick through his vaccine injury will be permanent. How much we will be able to help him manage over his life time with various interventions, and how much we might be able to fix. But I do know that he was injured by his vaccines.
I got to a place about two years ago where I would walk into a doctor’s office and say “No one believes me, but I think this kid was injured by his vaccines”. I was usually met with either disavowal, or that blank face that always leaves me so curious. What are they really thinking? Do they think I’m another one of those wacky autism parents who spend too much time on the internet? Have they just shut down and stopped listening? Or would they like to say more but can’t?
Nick has a lot of medical problems so we have seen a fair number of specialists. I’m getting to the point now where I’m not willing to work with a doctor who isn’t open to the idea of vaccine injury. If I can’t put that out there, then what are we really treating? My hope is that over time we parents are educating the medical community. A doctor may disagree with me and I may choose not work with him. But perhaps the next mother comes in and has the same discussion, and the next and the next and sooner or later this physician has got to open their mind to the possibility. That’s why I think it is so important to speak up with doctors.
I think some of the greatest change is coming from some of the smallest and quietest conversations; at the bus stop, in the grocery store, on the playground - mother to mother. A few years back I used to get into these conversations and a parent would say something to me like “Well the vaccine/autism issue is closed, the science is in and they’ve proven there is no link”. This was so emotional for me that I would respond from the hip with some garbled comment that wasn’t all that effective and left me feeling really vulnerable.
I think the antidote to this is Mary and Louise’s book. Armed with solid facts we are able to respond in those moments with quick information. Because this topic is so emotional for all of us, to be able to respond with fact and science gives us a little intellectual distance. Our breathing slows down and we can be rational and clear. Then we can walk away feeling effective.
It seems to me in Autism that everybody gets to say no to the Autism parent. Your pediatrician says “No, your child’s regression into Autism couldn’t possibly be the result of a vaccine and if it was I have zero liability”. The vaccine industry has also been granted zero liability. Your health insurance plan frequently denies imperative medical and behavioral treatment for your child. And the Vaccine Court refutes your case. Everybody gets to say “No”.
There is one thing, that they cannot say no to…your right to tell the story of your child’s regression after vaccination as boldly and as frequently as you see fit. It belongs to you and it is yours to do with as you please. It is your human right and I would argue responsibility to tell your story.
It gets ugly when you get vocal. I think it’s only going to get uglier as the epic tragedy of what we are doing to children today, comes cracking open, and I truly believe it will. I think it’s going to become a brutal fight. There is just too much at stake. The other side has reverted to discrediting the speaker. My husband is in Public relations and he calls this the “Nuts and Sluts Approach”. They have worked tirelessly to portray Andrew Wakefield as a nut and Jenny McCarthy as a slut. When we did the Autism Series on PBS and I mentioned that my son regressed after vaccination, several people scoured the internet and found whatever mud they could sling.
When bloggers or health writers get nasty, I feel a bit like Tommy Lee Jones in the Fugitive. You know the scene where he captures Harrison Ford and Ford tries to explain that he didn’t kill his wife? Tommy Lee Jones says “I don’t care”. That’s how I feel. So they found out that I followed the Grateful Dead in college, I don’t care. Nothing that anyone could ever say about me is going to hurt as much as what has happened to my child.
By the way, I am so glad I lived it up back in the day because this Autism thing has been no party.
And it’s not like I embezzled millions of dollars from the CDC or was a heroin addict.
Sometimes I feel more effective as an activist than I do in healing Nick. And sometimes the opposite is true. On a bad day for Autism politics when stupid studies have come out such as the one that said that most children with Autism have moms with big boobs, or that Autism is due to tech geeks marrying women who don’t speak English because those women are less aware of their husband’s social quirks. Anyway, on the lousy Autism politics days, my husband will say, “Look at Nick, he’s doing great, let’s keep going.”
The fact is…when we don’t tell the stories of what happened to our children…they win. Many of us are our children’s voices. You, like me, may not be able to explain the exact mechanism that caused your child to fall apart. But you do know what you saw as his first responder. We mustn’t let ourselves be talked out of our reality. We mustn’t let the psychic dissonance of not being believed make us doubtful or quiet. Like all of the survivors that came before us, we can be emboldened to tell our stories to make change.
I watched my child disintegrate after vaccination. I know what I saw. I know that it was real. When I tell his story I feel aligned with the truth, connected to my core, connected to myself as a powerful, nurturing mother worried about the health of all children.
I want to thank all of the parents who have been so vocal for many years on this issue. I am so grateful to you. Without you I would be in the dark. A more experienced Autism mom told me early on “It will be the parents that will get you through this.” I had no idea at the time how fundamentally true this would be.
I’m behind every one of you as you embrace your human right to tell your child’s story of vaccine injury. And I promise you that I will keep speaking up.
~ Mama Mac (Alison MacNeil, LICSW)
Wow. Such powerful words here. I have never been shy about telling doctors what happened to Little E. I know that exact look you mentioned, the eyes-glazed-over, great-another-parent-who-needs-to-lose-their-internet-access look. But, honestly, it’s that attitude from other parents that really floors me. Any parent will emphatically tell you that they know their child better than anyone. ANYONE. Yet, those same parents who are so confident in knowing their children because, well, they are their children, will question that very thing when I tell them my son was injured by a vaccine.
Interestingly, though, we have encountered doctors who are slowly coming around. My husband was ill a few months ago. We didn’t have time for the 1 1/2 hour drive to our usual family doc who is open to those of us who question vaccines, so he went to the local rapid care clinic. They immediately offered him a flu vaccine and a pneumonia vaccine. He refused. They asked why. He told them the truth. He explained that our son suffered a severe vaccine reaction and is disabled because of it. Of course, their response was, “Those reactions are very rare.” He replied, “That may be, but it doesn’t seem rare when it’s your child. And since my wife and I are his caregivers, we won’t be taking the chance. Turns out the nurse practitioner selectively vaccinates and was intrigued by my husband’s knowledge on the subject. She is seeing too many developmentally challenged children to ignore what is right in front of her eyes. Still, the organization she works for has her pushing vaccines.
Keep up the great work, Alison and TMR!!!
so a sick man walks into an ER and the first thing they want to do is vaccinate him! do they NOT read the inserts…sorry - that is so irresponsible.
Thanks Allison for Your powerful voice. I know how hot my two year old daughter became the night she received the Dtap and Hib vaccine. I heard my daughter screaming a few months later during the entire July 4th fireworks when past firework displays never bothered her.
I also witnessed my middle daughter after she received her school vacs lay on the floor doubled over in pain screaming for a half hour at a time. This happened in numerous occasions. A complete work up at Children’s Hospital revealed nothing. My Pediatrician then stooped so low as to try and convince me that my now 6 to had a psychological problem. She now at the age of 20 suffers from interstitial cystitis. I am quite sure the mercury is hiding in her tissues.
I will NEVER quiet my voice and will continue to tell my story and how important it is to educate yourself BEFORE you vaccinate. This lie must be exposed. This assault is happening on our babies, our teens, the elderly…….. everyone who cannot fight the toxic insults. This purposeful brain injury must STOP!!!
Thanks Allison for such a powerful post! I was just thinking yesterday how not long ago I would be afraid to tell people about my son’s vaccine injury. I used to reluctantly tell other parents, and only those who I knew were cautious about the vaccine schedule and would space them out, for fear of being ridiculed.
My son began to regress around 20 months, a little later than most regressive cases, because we vaccinated him late after going on an extended vacation. It was so apparent b/c unlike most regressive cases who get their vaccinations at their 12/15/18 months checkups and are just beginning to talk before they regress and lose language, my son was already speaking in 2-3 word phrases at 20 months and his motor skills were already advanced. So when he regressed it was so clear and apparent that he was losing so many skills and regressing. He lost his ability to string words together and would just repetitively say one word over and over. He stopped being able to hold a crayon or even point, which he used to do all the time. He looked drunk and was falling all over himself. He lost social skills, started developing rashes and chronic diarrhea. The doctor tried to sell me the theory that autism just turns on magically like a “lightswitch” coincidentally around the vaccine schedule. I’d ask the Doc, “But why does he have diarrhea?” Oh, that’s just common with Autism. Why does he get rashes? Why doesn’t he feel pain or heat/cold AT ALL??? Same stupid answer. These were not behavioral symptoms but physical symptoms that any other child would get sent to see a dozen specialists for. For a while, I doubted what I had seen with my own eyes. People around me made me doubt what I had witnessed. I can never get that first year back, where I could have been treating my son. I am so grateful for thinking parents who pushed me on the right track and made me strong and fight for my son. I no longer feel embarrassed or crazy anymore when I tell our story. Now I just feel pissed off!
Wow! Thanks sooooo much! I’m passing this on.
The process and reactions you describe for your autism journey, parallels many of the emotions during our Mito journey.
As I have become more vocal about the lack of care or improper care of mito patients, the rotten eggs are flying at us from even the most surprising sources.
Years ago I gave up my trust in Drs- they usually mean well, but no longer are they about the patient first, if this was the case they would be telling us the truth about vaccines and other toxins.
Thank you for so eloquently putting the emotional process into words.. I often feel like it is similar to post traumatic syndrome..
IT gets easier- as we stand bravely(with knees knocking)for the truth, for our children, there comes a sense of peace and self.
Diane, Mary, Guilded Thinker, Shiri - that’s right there is “sense of peace and self” that comes when we tell our stories. We can stand together knees knocking, with shakey voices and support each other in telling our truth. Courage that comes from desperate experiences is still courage nonetheless!
Momma Mac, you talk to my soul and bring me to my knees. Thank you for standing and sharing. The future will change because Nick and Patrick had moms who didn´t sit down and behave. And that we have amazing friends like all of the TMR and many many more who share this journey with us who kept on keeping on for change. I hope that soon, autism will be the Pink´s disease of yester-year. Till then, I am with you Momma…see you at A1 and there will be hugs and tears and cocktails that we need and deserve. XO
Bravo Mama Mac!!
Thank you Momma Mac for your bravery and your honesty! I have two daughters. My younger is vaccine free. Unfortunately I vaccinated by older daughter until I knew better, and I regret it everyday. She does not have autism, but struggles with chronic constipation that started a week after her second round of vaccination (constipation in my exclusively breastfed baby should have started some alarm bells ringing, but unfortunately didn’t, and I subjected her to even more). She has low postural tone, which could be due to the vaccination. I will never know. And that is the point. I will never know what my child should have been, because I blindly did as I had been brainwashed to do. I am a physical therapist, so have some medical training. I remember going to NVIC’s conference in 2009 looking for more information (and especially more information to convince my skeptical husband of what I was starting to believe more and more strongly) and just being BLOWN AWAY by the extent of knowledge and understanding of the parents there. Thank you for telling your stories over and over again, so that other moms hear, because you are helping to get moms to question and to do their own research and you are helping save children!
I fired 2 neuro’s who gave me the cold shoulder when it came to talking about seizures and vaccinations. I can’t stomach the hostility and arrogance on the part of the medical establishment. We are the voice of our kids and I for one am NOT shutting up!
God Bless You!! I wish I knew more “medical” people who have the guts to speak up. I am a registered nurse who used to work as an LPN at a doctors office. I found the whole fiasco of vaccination a travesty. I would see parents looking at the doctor as if he was their savior and trusting him unconditionally with their precious babies. It made me sick. I went back to school so I wouldn’t have to deal with vaccinating babies ever again. A little piece of me died with each injection. I wanted to scream at the parents to be sure and read ALL the side effects on the vaccination information sheet before signing the consent. I wanted to scream at them to say NO to vaccination but I couldn’t because I would lose my job. I am a single mom and needed the money. My children were not vaccine injured because when they were babies there weren’t as many vaccines as there are today. I truly believe in my heart the troubles with vaccination came with the passing of the law to inject newborns with the Hep B vaccine. My grandson is 4 years old and has never received a vaccine. He is the healthiest little boy. His immune system works perfectly just as designed. I speak to as many young new mothers as I can about the dangers of vaccines. I tell people to really take a look at the diseases for which there are vaccines. This is 2012 and medicine has come a long way. Most diseases, (except for viruses) are treatable with antibiotics. I had measles, mumps, chicken pox and rubella as a child. I survived and I am surely not threatened about diseases, especially flu. I have never received a flu vaccine. Doctors are brainwashed by the pharma reps and the medical schools and the government. I will keep up the fight against vaccination for as long as someone will listen.