Moving Heaven and Earth
Managing Editor's Note: I received this email and asked Shannon for permission to run it. She kindly turned it into a post for your reading enjoyment. Thanks, Shannon.
By Shannon Berman
Hi Kim,
First I need to apologize for the length of this email. I just looked it over and I have no excuse other than I am an angry mother who has never really vented, certainly not in an open forum.
Today I was able to watch your appearance on CNN and I wanted to thank you for speaking so eloquently on behalf of the autism community. I do visit the AoA website as often as possible but as the mother of an autistic toddler rarely do I have the time or energy to share my opinion or personal experiences.
However, there is something I find interesting regarding my son's story that again was brought to my attention by the physician that followed you on CNN with regard to the vaccination controversy.
As I've heard numerous times, the doctor again stated that it is merely coincidence the symptoms and onset for regressive autism occur at approximately 18 months and coincide with the MMR vaccination. Most children receive a diagnosis at approximately 24 months of age, 5 to 6 months post vaccination.
We are American expats and my son was given the MMR vaccination at 9 months of age and was diagnosed with autism the day after he turned 14 months, one of the youngest diagnosed at Kennedy Krieger.
In our case the same time lapse exists from MMR vaccination to diagnosis but both events 10 months earlier than the norm. I find that very interesting. He regressed immediately after vaccination, losing speech entirely, fine and gross motor skills lost, and the super social child was mostly gone.
Here is a post I was motivated to write (my first) this week after witnessing so much negativity directed at our community:
I consider myself to be a rational, left brained, believer in science. I am a helicopter pilot and former flight instructor (aerodynamics is my friend) with a degree in psychology and the mother of an autistic toddler. I’m fairly certain that I’m not crazy.
Our circumstances were such that our son was vaccinated with the MMR vaccine in Thailand(we are American expats) at 9 months of age and our extremely social, early achiever in every milestone, happy babbler just starting to say MAMA and DADA with real enthusiasm, never rebounded. My husband and I assumed he was just cranky from the shot and the short return flight home which explained away his not wanting to socialize. The crankiness continued along with total loss of eye contact which as a breastfeeding mother was very alarming and something I was acutely aware of. Both fine and gross motor skills diminished. The once mastered ring stacker had become totally alien to him. Odd behaviors sprung up not seen prior to the vaccination, hand flapping, obsessive opening and closing of anything hinged, endlessly banging a hammer on the tile floor, etc. All totally out of character for our happy little island explorer.
We lived on a tropical island and mostly everyone commented upon our return from that eight day trip that something had changed in our son. The twinkle in his eyes was extinguished and he was now grumpy, if not downright angry, all of the time. Many islanders asked if we came back with the right baby! It was that obvious.
He was diagnosed with autism the day after he turned 14 months and only that late because of having to relocate to civilization for the diagnosis. I certainly believe there is a genetic component (mirror neurons, minicolumns,???) that is the basis for autism but I am also a firm believer in the theory that in certain children environmental factors present a tipping point. And to the people who say that I am ashamed of my genes and looking for a scapegoat ask anyone who knows me-I’m the first to make fun of my big nose and ugly feet! No shame here.
Our son is in therapy and we are happy to see that his motor skills have caught up to be mostly age appropriate but speech and communication remain a serious problem. He was imitating sound better at 3 months of age than he is now. We have integrated biomedical treatments into our therapy regimen with success and will continue to do so. The improvements after starting the gluten and casein free diet were nothing short of incredible. Although we had already started the diet, it was also suggested by my son's developmental pediatrician working at one of the leading autism research hospitals in the country. Jenny McCarthy didn't invent this stuff so why people lash out at her when it doesn‘t work for their child is beyond me. We were told that some of the biomedical treatments could be very beneficial in a percentage of the children and that was one that worked for us. Chemotherapy did not work for my mother but did work for my best friend.
I think the extreme viewpoints from both ends of the spectrum (no pun intended) that are being volleyed back and forth in posts on CNN, the NY Times, and various other sites are naive at best.
I understand the anger that parents feel after watching the dimmer switch being turned down on their once bouncing, joyous baby but we have to realize that only with informed, rational discussion, we will be heard.
What I don't understand are people who so easily pass judgment on the families that are in serious pain, struggling to find a voice for their child.
I would hope that those of you who so harshly criticize parents for going to the ends of the earth to help their children would do the same if you looked into the eyes of your own child and witnessed the sadness, frustration, and isolation.
My child lost his voice overnight and has not recovered it--yet.
I'm thankful to everyone who keeps autism in the spotlight, researchers, physicians, parents, anyone who contributes to the discussion that will eventually lead to a better understanding and, dare I say, cure.
Kim, it seems so obvious to me that in some children a vaccination is indeed the tipping point. Help me shout if from the rooftops! What also seems obvious to me is that a portion of the research funding should be used to pinpoint those children who are susceptible to an environmental trigger and develop a test to be used for pre-vaccination screening.
I have gone through my stages of grief but now I am back to angry the more I hear 'experts' on national television saying that regression just happens to take place at about 18 months and any correlation to the vaccination schedule is purely coincidental.
Again, thank you for all of your hard work and for showing the world that not all parents of autistic children are idiots and most in fact are intelligent, articulate, loving people.
Shannon Berman
Shannon Berman is a full time mother temporarily living in Baltimore, Maryland with her two year old son, Cooper, while he receives therapy. They are living 9000 miles away from her husband Kurt and their home in the Maldives. Shannon and Cooper are soon relocating to Bangkok so they can be closer to Daddy while still receiving speech therapy as well as attending music and gym classes-and hopefully preschool! (Shannon is also not flying, not hitting the gym, not going to the dentist, not eating dairy or gluten, not shopping for clothes or having her hair cut, not traveling, not reading as much as she‘d like, sometimes she doesn't even get to shower.)
I'm not sure anyone will even see this but I wrote this four years ago and have searched for it here on AoA because of the #Hearthiswell request over at Thinking Mom's Revolution for letters to be sent to Representative Bill Posey.
I'm happy to report that my son Cooper, now six, is doing very well-nearly recovered. Nearly. I can say that we have done absolutely everything in our power to do for Cooper and it has been worth it. Every supplement, therapist, specialist, sacrifice, and life change has made a difference.
He is in second grade at a British International School here in Thailand. They have labeled him as gifted and a bit quirky. I did not tell the school about his autism diagnosis because I wanted him to go in with a clean slate. He still has a bit of difficulty with his speech but those issues are small, so small in fact that he was asked to star in and narrate his kindergarten Christmas play. I'm sure those of you here can imagine what an amazing leap that was and how meaningful that moment was for our family. I struggled to hold back the tears while watching him on stage in front of hundreds of people, speaking, smiling, having fun.
There is hope.
Thank you all for being such an incredible group of people. Now get your videos up on #Hearthiswell and start writing letters.
Posted by: Shannon Culler Berman | September 04, 2014 at 10:31 PM
A few lines from the article "INOCULATIONS: THE TRUE WEAPONS OF MASS DESTRUCTION" by Rebecca Carley, MD say it all. "...the reverberating truth, 'the shot heard round the world' which will lead to the evolution of consciousness necessry to stop the holocaust against humanity known as vaccinations, will be that not only are vaccinations not safe or effective, but that they are actually weapons of mass destruction being perpetrated upon humanity in the name of health, for the purpose of genocide and to bring in the New World Order."
www.drcarley.com
Posted by: nurse bev | March 28, 2010 at 02:00 PM
Elvanore,
My son was not vaccinated according to the schedule of the time (2001 era). He had not received any vaccines for months prior. On August 30, 2004 I took him in for one single vaccine; the varicella, also a live virus vaccine like the measles. Within 3 days he was completely gone. Seizures, no eye contact, monsterous meltdowns, major sensory issues, little to no speech.
There's a saying in the motorcycle world, "Look twice, save a life. Motorcycles are everwhere."
I say, research once, research twice, you could save your child's life. Vaccines are everywhere (and so unfortunately are the injuries).
You can sustain a vaccine injury at any age of life. And just remember, it doesn't matter how well spoken and intelligent your doc appears to be the decision and potential consequences lie with you. And if it is your daughter you refer to as being intelligent and well spoken, then I would think triply hard, especially as she's already sustained a vaccine injury.
Posted by: Angela Warner For elvanore | March 28, 2010 at 01:47 PM
My son received the MMR at 13 months old. He was just beginning to imitate words and sounds at that point - then he became this horribly angry, unhappy, miserable toddler who never wanted to be held, refused to eat - oh, you get the idea.
Being the dummy I was when I first started researching this, I thought well, my son didn't regress at 18 months so that can't be what happened to him. It wasn't until I went back and saw his MMR given at 13 months did it all make sense.
He began speaking at 3.6 years old after chelating with DMSA and still does 40 hours of ABA/weekly at the age of 5. Not recovered, but improving everyday.
Whenever you get the MMR, especially in combo like we had with varicella, flu, etc... - that's when it'll all hit the fan for so many kids.
Facinating - right?
Posted by: JessicaF | March 28, 2010 at 09:04 AM
Thanks Shannon for reminding me why I do what I do :) Advocate for children!
You are a great mom and all the other parents on here too. It hurts, really hurts, when people doubt you and bash you and think you are crazy...but there are many who are appreciative and listen and then question their decisions.
There is nothing better than to see a glimpse of hope in a mother's eye (father's too) when you tell them your story and that your child did in fact triumph and is now living a normal, happy, healthy life! I thank the moms before who gave me the glimpse of hope and I will continue to give others a glimpse of hope as well...passing the tortche to other parents who will in turn pass the torche of hope and recovery!
KEEP THE FLAME OF HOPE LIT!
Kind Regards,
Diane Renna
Meghan's Mom
& author of "Meghan's World: The Story of One Girl's Triumph over Sensory Processing Disorder
http://www.meghanstriumphoverspd.com
Posted by: Diane Renna | March 28, 2010 at 08:08 AM
Thanks Twyla;
As always you have so much good information. Thank goodness for information put out about vaccines from animal medicine.
Posted by: Benedetta | March 28, 2010 at 01:17 AM
Elvarnore, A perfectly typical little 5 year old girl in NJ died after her pre-kindergarten MMR booster. The parents successfully lobbied and created a law where doctors have to inform parents about the blood test to measure immune titers to MMR before giving the booster. Regression isn't your only concern. Please do as much research as possible before agreeing to more vaccines. There is nothing funny about vaccine injury.
Posted by: AutismComic | March 27, 2010 at 11:19 PM
doctors of my son ridiculed me, attempted to threaten me and even outright refused to be his doctor anymore for my stance on strictly saying no to their poisons.
zion was given a hepb vax before i even made it to the hospital (he is my adoptive grandson). he slept through the entire first month of life, unable even to be wakeful long enough to feed. furthermore, he had no suckle instinct and had to be naso tubed ten days in the hospital before he gained enough weight to come home.
later when he was three and a half months of age he received his first group of vaccines. he began immediately to have jack-knifing seizures mulitple times through the day for the next few months. these heartbreaking episodes finally leveled off after one year of age.
my son has autism, and there is no doubt in my mind that the vaccines were responsible.
after the dpt at nearly four months of age, he has never had another.
one day a doctor, his primary, tried to convince me that this was not a causal but coincidental thing. that he simply MUST be vaccinated and did i refuse he could no longer be his pediatrician.
i asked him for one simple written guarantee.
that zion would not worsen or suffer further seizures if we allowed this.
the doctor in question wouldn't even verbally guarantee this.
we fired that doctor.
tobacco companies had doctors in their pockets and research in their pockets and congress in their pockets for decades before the obvious and anecdotally proven evidence for a causal relationship between smoking and cancer.
it simply isn't in big pharma's interest to have the truth come out about their nasty little poisons.
keep up the good work shannon...and all the rest of you who wont be bullied when it comes to the truth.
Posted by: moon batchelder | March 27, 2010 at 10:10 PM
to elvarnore -- my son regressed at 4 years old during the 6 weeks following his MMR. I had delayed and spread out his vaccinations knowing that autism spectrum disorders ran in our family. I thought my son was past the age of age of being susceptible. It was horrible seeing my confident, bright, highly verbal preschooler change into someone who could not look me in the eyes and would not respond to his name when I was sitting right across from him. After 3 and a half years of GFCF and Yasko, he is about 95% recovered. So all I can say to you, elvarnore, is don't do it. If your child had a reaction to vaccines before, the next one is likely to be worse.
Posted by: stacey | March 27, 2010 at 10:09 PM
Shannon-- thank you so much for this. Even if you hadn't accomplished all that you have, you still wouldn't sound crazy.
You make a great point and are in a unique position to argue against that tired "coincidence" argument. Our twins got the MMR at a year and we can make a similar point. And I also don't get my hair done, don't work out like I should, etc. Sigh.
Many blessings on your return East.
Posted by: Gatogorra | March 27, 2010 at 10:01 PM
Elvanore-- usually the safer-vax/alternate schedule doctors who are sympathetic to the vaccine injury movement recommend splitting up the MMR and an alt schedule for healthy children. For a child who's already had a reaction, I'm not sure anyone sane and independent would recommend more shots-- not for a long time.
Children have regressed after age four and have regressed from the separate components of the MMR. We hear the first hand reports quite a bit in this realm.
You have to do what your conscience dictates but don't go into a blind panic about it. I heard a great expression tonight on the radio; "We don't have much time, so we really need to slow down".
Slow down, start reading. Get your thoughts in order. Think. Read more. And then do it over and over again before making this decision. There's a huge amount of data to take in and I think you'll be more comfortable when you're versed. Blessings.
Posted by: Gatogorra | March 27, 2010 at 09:56 PM
just a question--
my daughter is nearly 3 and her doctor is starting to push MMR. she had a possible reaction (even the doctor took it very seriously) to her first and last series of shots at 4 months. now the doctor says she thinks the reaction was "some sort of virus" and wants us to get the MMR. she says she will split it up over the next year starting with measles.
have there been any cases of regression after age 3? do you think this shot is safe(r) for older children? she is very intelligent and well spoken.
Posted by: elvarnore | March 27, 2010 at 09:19 PM
I am a believer in research for vaccinated vs. non vaccinated children. I often post when I see this incredible stonewalling that's happening to parents, parents who even believe in vaccinations but want a relaxed schedule, who want MMR separated again, and administered over long periods of time. I don't believe MMR 'causes autism' I believe it can trigger adverse reactions in vulnerable children. Why we do not have screening I'll never accept or understand, but there are a lot of us who feel this way and will continue to advocate for it. Shannon your words connect to the hearts of many.
Posted by: Eastcoaster | March 27, 2010 at 07:38 PM
What a thoughtfully articulate plea for reasonable human compassion and understanding. The last line of Shannon's bio really hit home -- the list of loss, of doing without so many activities that once brought her pleasure and keep her functioning.
I hope she is able to swiftly find the magic combination of successful biomedical treatments not only so that her son recovers his health and abilities, but she can start to reclaim those life-affirming pursuits that so importantly renew one's spirit.
Posted by: nhokkanen | March 27, 2010 at 07:36 PM
Benedetta, veterinarian Jean Dodds wrote:
"The onset of adverse reactions to conventional vaccinations (or other inciting drugs, chemicals, or infectious agents) can be an immediate hypersensitivity or anaphylactic reaction, or can occur acutely (24 to 48 hours afterwards), or later on (10 to 45 days) in a delayed type immune response often caused by immunecomplex formation. Typical signs of adverse immune reactions include fever, stiffness, sore joints and abdominal tenderness, susceptibility to infections, central and peripheral nervous system disorders or inflammation, collapse with autoagglutinated red blood cells and jaundice, or generalized pinpoint hemorrhages or bruises. Liver enzymes may be markedly elevated, and liver or kidney failure may accompany bone marrow suppression. Furthermore, recent vaccination of genetically susceptible breeds has been associated with transient seizures in puppies and adult dogs, as well as a variety of autoimmune diseases including those affecting the blood, endocrine organs, joints, skin and mucosa, central nervous system, eyes, muscles, liver, kidneys, and bowel. It is postulated that an underlying genetic predisposition to these conditions places other littermates and close relatives at increased risk. Vaccination of pet and research dogs with polyvalent vaccines containing rabies virus or rabies vaccine alone was recently shown to induce production of antithyroglobulin autoantibodies, a provocative and important finding with implications for the subsequent development of hypothyroidism (ScottMoncrieff et al, 2002).
"Vaccination also can overwhelm the immunocompromised or even healthy host that is repeatedly challenged with other environmental stimuli and is genetically predisposed to react adversely upon viral exposure. The recently weaned young puppy or kitten entering a new environment is at greater risk here, as its relatively immature immune system can be temporarily or more permanently harmed. Consequences in later life may be the increased susceptibility to chronic debilitating diseases. As combination vaccines contain antigens other than those of the clinically important infectious disease agents, some may be unnecessary; and their use may increase the risk of adverse reactions."
http://www.bassetnet.com/Info/VaccineIssuesUpdate.pdf
Posted by: Twyla | March 27, 2010 at 06:40 PM
Hang in there Shannon! my son was diagnosed at 16 months we went whole hog on biomedical and educational therapy. He had his 3rd birthday on March 18th, and he doesn't qualify for special services in our school district- he 'lost' his diagnosis (docs are backtracking saying he must have never had it! He's a happy healthy 3 year old. He's still on a special diet and does a little private speech therapy- but he's doing so great.
BTW, you are totally right on!
Posted by: casey | March 27, 2010 at 06:37 PM
Shannon well done, well done.
Kim, thank you so much for keeping up the fight when there is none left in me. Each day I read this website it gives me the strength to continue.
Sincerely,
Elucidatus and Family.
Posted by: Elucidatus | March 27, 2010 at 01:46 PM
Think of the timing, the very time this reation occurs, is when we are having kids teething, a downturn of the immune system for a time, a challenge if you will, and then we challenge it more by multiple unnatural viruses all at once plus neurotoxins....Brainiacs! Sometimes I wonder if they are using their heads at all? Our kids don't need more challenges to their immune systems if they have any predispositions to injury such as low metallothionein function, high copper, low zinc, low glutathione, were birth injured, were ultrasounded, eat crappy foods, weren't breast fed, had an infection in utero, had a mercury toxic moms...I mean really...do they EVER take these things into account? EXACTLY...
Posted by: kathy blanco | March 27, 2010 at 01:05 PM
Beautifully written!! Thank you so much for continuing to "shout it from the rooftops"!
How so many can cavalierly summarily dismiss all these similar accounts as coincidence and parental delusion is beyond me!
Very best wishes to you and your son!!
Posted by: Twyla | March 27, 2010 at 12:34 PM
Shannon Our story is the opposite end of the time line... Tanner was almost 5 at diagnosis of Autism. How long will they ignore us? I have the Doctors reports in my hands! July 4th 9 AM Last full sentence... "My name is Tanner. My name is Tanner" We all wear the name tag... My Name Is .... ( Wear it for Tanner & All those that have been hurt by those in white coats )
Posted by: Tanners Dad | March 27, 2010 at 10:54 AM
I am beginning to think that the NIH, CDC, vaccine manufacturers idea of a good vaccine is the greater length of time it takes to make the immune system go super nova. For my daughter and son it took the DPT shot six weeks to develop that strange hot fever/heart murmurs- they only got caught because the docs kept giving them untill my daughter and son started reacting immediately with seizures and strokes.
For my husband the first tetanus shot that we know he reacted to was with in a few minutes and with a seizure all night long, but the next tetanus shot took three weeks, no seizure just intense pain.
So the MMR shot could take 2 or 3 months????
Strange how that works - sometimes it is immediate or the next time in the same person it takes time. It is too bad we know nothing about the immune system and why?
Posted by: Benedetta | March 27, 2010 at 10:02 AM
Shannon,
Amen sista!
How many of us are out here? My son's story is so similar to your son's except he is 12 years older than your Cooper. It infuriates me to hear this is still happening. And we parents are being ignored and blown off. We have lost our children and we are supposed to get on with it? Nope- ain't gonna happen. Screw the "coincidence" excuse. Anybody who lost a kid as you described isn't buying it and we aren't going to stop talking about it either.
Stop the poisoning of our children. Shout it from the rooftop!
Good luck with recovering your Cooper.
Posted by: Andrea | March 27, 2010 at 09:43 AM
Calling all angels.
http://www.youtube.com/watch?v=iPnEuJx3_XQ&feature=related
Posted by: bensmyson | March 27, 2010 at 09:06 AM
Beautifully written. I am the mother of an ASD son, now 27. The information is not complete yet, but there is more out there now than there was 20 years ago. Your children will recover and improve and so will mine! Nancy Fales Garrett
Posted by: Nancy Fales Garrett | March 27, 2010 at 08:33 AM
Amen SHANNON!
Incredibly well spoken. Thanks for sharing. Sounds like a mirror image of our toddler although a thiomerosol flu shot was the culprit.
Posted by: Jim Fick | March 27, 2010 at 06:21 AM