This year at Autism One I did the hardest thing I have ever done since I started my journey with autism. I had to bear witness. I had to bear witness to pain. I had to bear witness to the scars that have not healed and may never heal that my fellow TMR family carries around with them daily.
We were asked by Leslie Manookian of The Greater Good to join
her for part of the afternoon on Saturday. She wanted to film us and to get our perspective on the autism crisis as parents of children who are affected. She wanted us to have a casual but open dialog talking about our kids, our experiences, our beliefs about what is going on, so we all made our way to their filming area for what we thought would be a thoughtful but fun conversation among friends. We were basically just thrilled to be able to spend more time together! We were not prepared for where our conversation would take us.
The conversation began as many AO conversations do, talking about us, and who we are and a little about our kids. It quickly became about what are we as a nation are doing about this crisis, what is causing autism numbers to skyrocket, comparing the differences in our vaccine schedule now and what it looked like when we were all children. The usual biomed talk.
But then, we were asked to talk about OUR kids. Each of us were asked, “Was your child’s decline slow or immediate following vaccines?” The conversation changed. Now we are talking about our babies. And we went down the line.
“I lost my son within 10 days of his 15 month shots.”
“For us, I believe it all started with the hep B shot at birth. He didn’t have his rooting and sucking reflexes after that.”
“My son had a vaccine reaction at 3 months old, but I didn’t know what it was at the time. We were told it was normal.”
“I asked about all of this. I asked about vaccines. I went in there with documents in my hands citing adverse reactions. Everything in my gut was telling me it wasn’t the right decision and I got talked into it anyway.”
“I didn’t hear my son say mama until he was 7. I feel like I don’t know my son, what his personality is like.”
As we stood around sobbing, and hugging each other, and holding hands to give each other strength I felt like my heart was being ripped out of my chest because while these are the same as everyone’s stories, THESE words were OUR stories. The stories of my dear friends that I consider my family. The stories of their beautiful children. The pain in that room was felt by each of us for each of us.
And then we were asked, “What do you want? What will give you peace? Justice? What?”
And one of our number said something that broke my heart because I can identify with every word of her statement. She said that she was blessed and grateful. Her children are doing well. Her children are recovered and she doesn’t want justice, or an apology, or anything to be at peace. She wants to forget. To forget the head banging, the screaming, the violence and rage that her children went through. Despite the healing and the peace that she lives with now, she wants more than anything to forget the years of agony that she watched her children live through.
“How do you forget the pain of watching your child bang their head? I cannot forget the screams. Not ever. There is nothing that can erase that from my memory, no medicine.”
Each one of us left that filming and went off somewhere to cry. All feeling a little broken, shattered, but bound closer than ever to each other because we stood in a circle and bore witness to each other’s pain. And it hurt that much worse because we all KNOW we are not a unique group. There are thousands upon thousands of us out with the same scars that may or may not ever heal. I hugged everyone I met at the conference after that a little tighter, in an effort to say, “I know what you are going through. Even if my story isn’t exactly like yours…I know.” We all do.
Watch the video – Vaccine Beat 1: Autism – TMR
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I have Asperger’s. was not diagnosised until about two years ago, I am now 55. I am married no children. I am not recovered. I probably never will be, but I am doing better. I know your children seemed to recover, but your children all got Autism after getting shots at the doctor’s office. Mine was not case by a vaccine, I was born with this, so I do understand what you went through, but my story is a bit different. My question is, if I was born with this. Does this mean I do not recover from thing.lp
Welcome to Thinking Moms’. Sometimes we miss some important comments when they come in after the original date of the blog. Not ALL children who recover got autism caused by shots. Autism can be caused by a number of different kinds of toxic overloads, some of which can happen during pregnancy. No matter what the cause, there seem to be things that can be done to help. No one knows how MUCH help. And, unfortunately, it’s hard to know just what will help whom. Just because someone has had autism from birth doesn’t mean it’s not recoverable.
My advice would be to find groups to talk about treatments and which treatments seem to help which kinds of symptoms. You will probably mostly find that you’re talking with parents. Sometimes it seems that there is an uncomfortableness between parents of children with autism and adults with autism. Sometimes the adult with autism thinks that when the parents say that they want to get “rid of” or “cure” their children’s autism that that means that they want to get rid of the child with autism. And nothing could be further from the truth (at least for most parents). Most parents just want to see their children not LIMITED by their autism. Autism can be a condition that makes life very difficult for all concerned and loving parents don’t want life to be that difficult for their children. If you give the parents a chance, it is likely they will be VERY interested to know what life is like from your point of view as there will be many similarities between you and the children they love so much.
One other thing: It seems with our western diets and obsession with antibiotics that almost everyone gets some help from using probiotics and digestive enzymes (if you’re not sensitive to them, and sometimes people are sensitive to one kind and not another). I would start with reading Enzymes for Autism and Other Neurological Disorders. Good luck!
I’d love to see the video, to be able to share it with other parents who feel so alone
We will keep you updated when the video is coming out 🙂
Wow. I have no words. Just tears.
We can never unhear the screams or forget everything we have seen happen to our kids.
I can’t imagine what justice would be enough to make that better. I have to keep reminding myself that what we do know by keeping this horrible epidemic in the public’s eye is maybe save a few children per day.
Beautiful, moving, and very true post.
Moving words. Unfortunately, no matter how much is uncovered and the number of interventions involved, my nephew, age 18 is NOT recovered. Please keep up the fight because there are those like him who are still non verbal, still seizing, and still nowhere near being able to live the life that God intended for them. My heart breaks every time I hear someone discredit the plight and knowledge of parents of children with autism, aka parents of vaccine injured children.
God bless you all, and God bless the makers of The Greater Good, which is such an important documentary. The word is getting out there – slowly, but surely. I started my research after reading The Maker’s Diet in 2007. That book led me to Dr. Mercola’s site, which eventually led me to The Greater Good a couple of years ago (and many, many articles, books, and blogs in between). I’m so grateful for the knowledge I have now because of all of wonderful people who question everything and speak the truth.
My son at 9 mos was walking. By 17 mos had potty trained himself. Right before 2yrs old was reading, doing simple addition, and speaking 6-7 word sentences. He had a slight fever this would have been 2091. We brought him to docs for MMR doc said no problem even with fever. He was fine until nighttime his stomach was hurting he threw up and other end issues for almost 2 mos. we noticed a few oddities i his behavior during this time but ehhhh kids are sick they act different right? Well his stomach cleared up however he was back to wearing diapers, not talking much maybe mama, dada. Not caring about reading or anything, he could barely walk without falling, then the sponing and head banging, hair pulling etc. Doc said regression is completely normal! And he could not be autistic I was not a refrigerator mother. He has relearned talking, potty, reading etc. social ideas we are working on. And he still falls a lot. He will be 13 soon he is also on the honor roll no thanks to his doc. Diagnosed at 7.5yrs old.
As if I hadn’t learned my lesson I agreed to get the pneumonia shot for daughter she was 4.5. Less then 3 days she was coming down with something. Within 2 weeks 5 day/nights in hospital with pneumonia. Doc said she would have been worse without shot. I think she was full of something. So now no vax unless I change my mind which I don’t see happening. At the school all my daughter’s classmates other than 3 got flu shots and guess what the 3 if then were the only ones that did not get the flu.
Breaks my heart to read “my 4 year old has Autism” and my other kids w/ adhd and delays. WHEN are we going to HOLD THE PEDIATRICIANS ACCOuntable??? When are we going to start counting the vaccine injuries for the young and old alike???
My father, argh! whom i dragged along to a few of my early appts to the Neuro-money grab, and also to a renouned DAN!, recently had a health scare. And, the pressure to take a pneumonia vaccine was INTENSE (interestingly enough, he had pneumonia). He was NOT thinking rationally, he was SICK! I was in the room when 2 perky nurses came in to “SELL” the vaccine. He TOTALLY CAVED. We fought about it, eventhough it was upsetting him, I kept the pressure on to where I was begging him to not take it. Well, my friends, he took it and within 24 hours he was psychotic, and showing signs of kidney failure. It was just another day to ALL THE “professionals”. I left him the day before and he was clearly on the mend. NO ONE bothers to notice the impact these vaccines are having.
until we start to count, track and measure the ill effects, nothing will ever change.
I have an order w/ my sons Montessori school. NO ONE from the health department comes within 10 feet of my child. EVER. Private school and money talks. When they start “counting” vaccine injuries, only then will the tax payer supported health agencies be relavent.
I’ll never shut up.
I’m so sorry for what you went through with your dad. It boggles my mind. I’ll never forget when I took my 86 year old grandmother into the ER because she was having a stroke. While she was laying there on the hospital bed, the nurse came in and tried to give her a flu shot. Much to my mother’s shock, I stood up and said, “you are NOT giving her a flu shot.” And the nurse said, “Well, it’s policy, every senior in the ER gets a flu shot.”
I said, “The woman is in the middle of a stroke — you are NOT giving her a flu shot.” What happened to above all do no harm?! And how do they know she hadn’t already had a flu shot?! It is just baffling how reason and logic just don’t apply.
I also agree about the health dept. I had my principal swear he would contact me when they came in to the school to do the “mandatory H1N1 vaccine.” Well, he didn’t and my daughter came home shell shocked because they “kept calling kids down one by one and I wondered when I would be next. One girl said, ‘My mom said I’m not supposed to have that’ and they told her, ‘you can come down on your own, or we’ll make you come down.’ ”
My daughter has Guillain-Barre, ADD, HSP, and no short term memory. And she watched her younger brother suffer with autism for 5 years. That principal got an earful — I don’t know if I’ve ever been that angry. I trust no one.
These are horrifying stories. Thank you for telling them. It gives me more resolve about pushing on. Sometimes it gets hard as you all know. And thanks for being the kind of people who will push back. That’s what it’s going to take.
I feel the same way about not being able to hold Pediatricians and vaccine manufacturers accountable for all.this pain and suffering!! And I’m also angry!! The reason we can’t Sue them is because in 1986 a law was passed that protected these bastards from getting sued!! You have to go to “vaccine court”, and even when you do that it has to be within a very short time from the time the damage started, and even a shorter time than that for death being the result if vaccination!! That why they’re drastically increasing the number of vaccines administered to infants and children. The bastards can’t be sued!!! But one day they WILL have their day in court–in the presence of our Lord Jesus Christ at the Great White Throne Judgement to be held accountable for all those children and babies they harmed, maimed, and murdered!! Justice WILL be served!!
You are so inspiring.. I have a little 4 year old
Girl who is autistic and reading the blog everyday gives me hope.. I think the bond you have is amazing.. I wished I had the support you all have.. I feel alone all the time .. And being a full time warrior is hard..I also have 2 other kids all with labels.. ADHD, develop delays .. Thank you for you stories .. You really make me feel I am not alone..
Please find me on facebook. You are NOT alone. We are all here to support each other through this. Megan Davenhall
Amen! Sometimes I think there is something wrong with me because there is that piece that just won’t heal. My son is 75% recovered…we have a life now…but I cannot escape the images of his seizures. I cannot escape the choking sounds he made at 6 months old when we brought him home from his vaccinations and he went into anaphylaxis. The pain of holding an almost 2 year old who was violently seizing in my arms as I was screaming and running for help…it will never leave me. And the image in my head of the aftermath of that seizure…when he turned completely blue and lifeless and passed out…we thought we had lost him. There is nothing…no justice, no peace for that. There is only fighting like hell to make sure it doesn’t happen to anyone else.
(((Janice))) It’s so hard to forget those old wounds and heal. <3 That's my wish, for our children to heal and for all the caregivers to heal emotionally as well.
Thank you for sharing this for those of us who couldn’t be there. It’s so important because the more we hear each others’ stories the less we all believe the line we were fed previously (you are crazy, you are a first time mother, that’s not possible, you made that up because you are greiving… blah blah blah).
We speak. We share. We make change.
Amen, Valerie. We have to keep telling and hearing the stories. If we DON’T bear witness it will just go on and on.