As I’ve written in the past, I used to love the month of April. April brings warmer weather, springtime, and new life. More importantly, it brings my birthday! I’ve always looked forward to this time of year. Nowadays? Not so much. The more Aprils I experience, the less excited I feel and the more incensed I get.
Those not personally affected by autism are lead to believe that Awareness is all we need. Families like mine are way beyond needing just awareness. Autism is expensive to treat. It can be a struggle to handle, too. Families need support – emotional, physical, and financial support. They also need autism action.
Over the last ten years, after watching my favorite month turn into what feels like a big money-making scam, just the anticipation of flipping the calendar page makes me twitchy. April claims to boast autism awareness. Awareness was a great initiative over thirty years ago when the autism rate was 1 in 10,000. But for a disorder that now affects 1 in 68, focusing energy on actually doing something about the rising rate would be better. That needs to happen before the rate rises again, which at the rate they are going now, that will happen sooner than later.
As March wraps up, and before we flip the calendar page, I’d rather flip over two pages and let May begin early. I’d get to skip through the depressing amounts of blue washing from multi-billion dollar corporations. Blue is splayed all over news stories, municipalities, and grocery products. Making a profit on our children’s diagnosis feels like a punch in the gut. But, I have a way to combat those depressing thoughts.
When I start to feel down in the dumps, I have found a way to work my way out of feeling so blue: through my music. Music can PUMP. You UP!
Before April gets a chance to begin, and before I start to feel like I’m drowning in blue splattered this and blue soaked that, I thought I’d give you a sneak peek of a playlist that I’ll surely have on repeat. From April 1st through to midnight on April 30th, and through some of the madness that comes during what used to be my favorite month, I have a plan.
Music turned up to a nice respectable level.
Madness turned off.
If you’ve got a go-to song that is a “must listen to”, share it in the comments below. If I add it to my playlist, I promise that I’ll dance to it in my kitchen sometime during the next thirty days.
Songs that inspire me to Speak Up!
Blondie – Rip Her to Shreds
This could be anyone. Male. Female. Former provider. Current arch nemesis. This person is the one that could’ve done something to help your child but didn’t. They are the ones who should’ve done some more but nothing instead. Acting like everything is fine. That you’re overreacting. Telling everyone that they’re perfectly right and that you’re a hot mess. While we would never promote punching people in the face, we know that sometimes that thought crosses your mind. So does wanting to rip that sort of person to shreds. You know her. Come on. Rip her to shreds. Rip her to shreds. Yeah. But don’t actually do that! Just hit replay. Let the music soothe your soul. ♫
Nine Inch Nails – Head Like a Hole
When people ask me why I’m so adamant about speaking up about vaccines, I ask them if they want the short answer or the long answer. Most of the time, the person doesn’t mind hearing the long answer. It starts out the same way a lot of other parents begin their stories, “I had a beautiful, happy, healthy baby until…”
Until a well-baby visit.
Until a round of vaccines.
Until too many too soon.
Until it was too late.
Well-baby visit after well-baby visit, I brought my child in for a check-up, for a round of shots, for a proverbial pat on the head. You did the right thing, mom. See you again soon…at the next well-baby visit!
Sadly, those well-baby visits didn’t leave my child well. In fact, Ronan wasn’t very well at all after them. The more well-baby visits he went to, and the more vaccines he received, the less well he got. He reacted. He got sick. Then he worsened.
Easily I can now recognize the signs, the symptoms, and the red flags now. But as they were happening, and even after bringing some of them to the attention of our providers? I was blind. I was uninformed. I was too trusting. I was too trusting not of my mother’s instinct, but of “the system” and of those who ran it.
I’ve learned quite a bit since then. I’ve also told Ronan’s story hundreds of times since then, too. It hurts to retell Ronan’s story as many times as I have, but I still share it. As I finish sharing Ronan’s story, I’ve either left the person I’m speaking to in complete and utter shock, or I’ve left them in a puddle of tears. Depending on whom I’m speaking to and on how much I've shared, I cry too.
What happened to Ronan?
Several times in the last two weeks I‘ve run into an expression that I have a love-hate relationship with: “Cathy, I don’t know how you do it all. How do you do it?” Since it’s usually a rhetorical question, and I’m not really going to answer it, why love-hate? Because someday I just might respond. And it isn’t going to be pretty.
Here’s the hate version. And, fair warning. It includes some of the things I want to say out loud but don’t:
How do I do it?! Do you really want to know? You wanna wear my shoes for a day and find out? You wanna see what I see? You wanna discover what others are continuously trying to cover up? You wanna read my PMs from parents asking for advice? Or emails from a distraught parent who finally connects their child’s deteriorating health to a vaccine injury? You wanna hear the cry of pain that a vaccine-injured child cries when his body cannot do what his mind is telling him to do? Or hear the frustration that comes out of a child who was physically capable of doing everything but is now both physically and mentally frozen in a developmental stage from eight years ago?! You wanna know more about that child? That it’s MY child who suffers more than you’ll probably ever suffer over your entire lifespan?! No, you don’t want to know? Come on, why not? Am I scaring you? Oh, I am? Well then, please, I implore you; don’t ask me how I do it all because one of these days I am gonna unload all of this on somebody and tell them everything—the good, the bad, the awful. And the ugly, unbelievable yet 100% God-honest truth.
Told ya it was a little harsh.
And now, the love version:
How do I do it? Oh, I’m so glad you asked! You see, something terrible happened when Ronan was a baby. Sure I could have done a little bit of reading which might have prevented some of his ails, but I really didn’t know enough back then. Now that I know a thing or two, my mission is to help as many parents as I can. I want to save their children and the world! I want tell everyone to education themselves on the explosion of environmental assaults we’ve all been exposed to. Read, read and read some more. It’s really pretty exciting to share what I know and what I have experienced. It’s actually a blessing to see what I get to see. I’m amazed at what I get to hear. I’m truly honored to have the relationships I have now with so many other parents because we’ve learned just so much from each other. And Ronan? I get to see my child blossom, albeit very, very slowly. But, I get to watch him grow as much as he is capable of growing.
Hmmm, that version sort of reminds me of rainbows and unicorns.
In the last ten years, I have never seen vaccine news being reported as frequently as it has been in the last three months. First, a note of thanks:
Cathy Jameson, mom to a vaccine-injured child
Since there are so many media representatives who have not provided facts, I finally have to say something:
The public is bombarded daily with information. From the newspapers to television to the internet, breaking news and news we can use is available and at our fingertips all day long. People turn you on, tune you in, view your shows, listen to your interviews, and read your articles. Reporting fair, balanced, investigative, facts used to be the norm. What’s being aired, printed, and posted now is not. We’re now being fed fear, half-truths, mistruths, and straight up lies.
What should you do instead?
Do the research. Do that before you open your mouth, before you write your article, and before you contribute unnecessary confusion about vaccines.
Facts, not fear. That’s what your viewers, your readers, and your subscribers expect. It’s what the public needs to see. It’s what the public deserves to hear.
Cathy Jameson, mom to a vaccine injured child
For the last few months, I’ve tolerated reading, listening, and watching the fear, the half-truths, the mistruths, and the lies coming from the national news. But when I saw the lies being aired closer to home, I couldn’t just sit here and ignore them. So, I wrote an angry letter. Then I sent it.
This was a response I sent to someone who used fear in his article and who also failed to be thorough. If only he’d only done a little bit more work, and if only he’d been a little more considerate to his audience…
Dear Mr. C—
I just read your article about the measles. I agree that measles information is important to share, but I was disappointed with the last part that of the article that you titled Misinformation: Vaccines Cause Autism. As the parent of a child who is vaccine injured and whose autism was caused by his childhood vaccines, your lack of knowledge and understanding of this very real issue was disappointing to see. Further, the final bolded and all-caps sentence in your piece, "PLEASE, FOR EVERYONE'S SAKE - VACCINATE" was even more disappointing and was quite shocking to read. Making general health care demands to readers, when the measles vaccine has caused more deaths in the US in the last 10 years than the measles, is presumptuous and rude.
If your future articles include the vaccine topic, consider looking at all sides of the vaccines including that some people cannot tolerate them. Consider researching and reporting the following facts too:
-the US Supreme Court ruled that vaccines are unavoidably unsafe
By Cathy Jameson
Since December, mainstream news stories dedicated large amounts of time and energy on the measles and on the measles vaccine. Sadly, much of the news that I saw was inaccurate or sensationalized. With how over-the-top the media’s been, I wasn’t sure what to expect when I saw this article from the Washington Post last week: News Coverage of Vaccine Controversies Drives Down Support for Vaccines. Surprisingly, I found myself agreeing with some of the points being made. It’s too bad that the media didn’t remember to keep a few of these points in mind when their measles mania coverage began:
The key lesson regarding vaccines is this: the more the news media devoted attention to the political controversy, the less the public supported vaccination.
The media shot themselves in the foot with their continuous news coverage of the measles outbreak, which leads to takeaway number two from the article:
Continuing coverage of the controversy surrounding vaccines may have unfortunate consequences.
The authors’ research focused on unfortunate consequences of the media and of vaccine supporters, but they neglected to include that the public also suffers. The public, even though they are the ones targeted for vaccines, don’t seem to be an important factor:
…politicians and journalists should realize that politicizing vaccines — and reporting on the resulting conflict — can weaken the public’s support for vaccination.
Takeaway number three to politicians and journalists? Shut up.
By Cathy Jameson
Vaccine exemptions exist to protect an individual's health care needs. In response to the growing number of states working to revoke exemptions and to restrict our personal rights, we thought we'd share this post today. This post doesn't include everything there is to know about vaccines, but it is a simple reminder. It's a reminder that vaccines come with side effects and that they can result in injury and death. For those who wish to avoid injury and death, who cannot be vaccinated, or who choose to not be vaccinated, have been able to successfully opt out of vaccines with one of three exemptions. Please remind the politicians that these exemptions were created for a reason.
I wrote the post below in 2013, but it's certainly relevent today:
For the last few weeks most of my posts here have been about vaccines and vaccine safety. Some of you may be missing my usual hopefully-ever-after writing, but vaccines have been bugging me lately. When that happens, I don’t feel very hopeful or very happy.
No matter what I’m reading–a magazine, a mainstream newspaper, or a blog, I can’t escape mention of vaccines these days. Sure, I subscribe to a few places that typically highlight only vaccine news, but I’m reading about them in other places, and the news isn’t looking good.
I can’t shake the disappointment I feel after seeing these stories. Most of what I’ve read lauds vaccines claiming that they are safe despite their side effects, and that they’ll work if we give them a chance, and what’s the big deal, anyway? Oh, when they don’t work? Well, we’re sorry, let’s move on. I know I speak for many when I say that that kind of news reporting is depressing and unacceptable.
Can you imagine if vaccine news stories across the mainstream channels would actually reveal all there is to know about the vaccine--including the bad stuff? I’m talking about the side effects, the lingering pain and the secondary illnesses that turn into everyday struggles after receiving a vaccination. That information should be discussed more openly in the exam room and in the news but hardly seems to be. I know this because I’ve been there in that exam room before and never got that sort of information. People I speak to today about their vaccine encounters say the same thing. When I hear from them, as they reach out to me for help, it’s clear that the right things are still not being said: “When do I worry about this rash? The doctor didn’t tell me anything!” “What? I never knew you can still get the chickenpox after getting the chickenpox vaccine!” “What should I do about this fever? It’s so high, and it won’t go down!”
121 cases of the measles
121 cases of the measles that included recovery
121 cases of the measles with no deaths reported
121 cases of the measles that sent our country into a tailspin.
I honestly thought the onslaught of measles articles would have subsided by now. But we’re going into month two of measles mania.
The news coverage hasn’t helped to change the subject nor to reduce the level of anxiety too many are experiencing. Instead of properly reporting on what’s usually a temporary illness, the press took what could have been a simple FYI (Measles has been spotted), to using full-on fear tactics (We’re all gonna die), to encouraging the public to turn on each other (Unvaccinated? Round ‘em up, Nazi-Germany style!).
Pre-measles mania, for the most part, we worked together. Sure we had differences with others and didn’t always see eye-to-eye on every issue, but we respected each other’s points of view. That included vaccine choice. But as the measles mania grew, and as the media and the government bodies that oversee and benefit from the US vaccine program took every chance they could to paint a pretty picture about vaccines, those choosing not to vaccinate quickly became the enemy.
Take time to read. Ask the questions you need to ask. Learn what your rights are. Protect those rights. And always, always trust your instinct.
Moms are often told that they know their child best. They hear that statement in the doctor’s office and sometimes by their child’s teacher. When I hear it being said to me, I hold my head up high. It’s as if someone has just given me a badge of honor, “Cathy, out of everyone here, it’s you who know Ronan the best!” And it’s true.
In the past, when I was told that I knew Ronan and his needs the best I questioned why it needed to be pointed out to me. Of course I knew my child. I’ve spent the most time with him! Of course I knew what he needed. I evaluate Ronan and his needs daily! It was a no brainer that I absolutely should be considered “the” expert on Ronan. It’s not only what I was, it is who I have become.
Most people who would think to say to a mom that she knows her child best do so with the utmost respect. But, I’ve found out several times now, that the “You know your child best!” statement can be delivered two ways. The first way is done so as a compliment. The second way it can be delivered is adversarial. That shouldn’t happen, but it does. It happened years ago to me.
Parents feel like they’re backed up against a wall when it comes to vaccines. With how the news continues to bombard the public with inaccurate information about vaccines, especially the measles (MMR) vaccine, I can understand why some parents are concerned. If the public was properly educated about measles, vaccines and health care rights, parents would probably not be as confused and concerned as many say that they are.
Since I have been fielding questions from young mothers about these important vaccine topics, I thought I’d revisit this post, which ran two years ago, and share it with updates today. If you have any positive responses that will help educate parents on their vaccine rights, please we welcome you to add them to the comments section below.
When you have a chronically-ill child such as I have, and when you know that some of the problems started from measures that could have been prevented, you tend to read everything that crosses your path about those measures. So, it’s no surprise that when I saw the title of this article two years ago that it piqued my interest. I was actually giddy thinking that CNN might shed a positive light on why parents should consider firing someone like their pediatrician. Since so many pediatricians seemed to have turned a blind eye to vaccine injury, and since parents report feeling bullied by doctors about vaccines, I was lured to read more from this mainstream news source.
I was like many others growing up – it was second nature to show respect toward doctors. Lab coat or not, we were taught (or maybe just assumed) that ‘doctor knew best’ no matter what. We were not to question them. We were never to doubt them. We were to trust them and to only trust. Well, I don’t mind sharing that some of my son’s doctors were more human than they were medically savvy. Those doctors, the ones who contributed to Ronan’s decline, were fired by me from treating Ronan because of their unprofessionalism, because of their inadequate knowledge, and because of how utterly disrespectful they were to me and to my son. Their years of schooling, their thick medical textbooks, their professional title and the recognizable initials that followed their name meant absolutely nothing when they didn’t see that, or care that Ronan is first a little boy, and second, has some serious and complicated medical needs.
Making the decision to walk away from Ronan’s doctors wasn’t a quick decision. It was made with careful thought and always after weighing several factors. It took a great amount of thought, but I have never regretted letting them go. With that, here are five reasons to let a pediatrician go. Here is what I have learned has become an all-to-common scenario parents are facing in pediatricians’ offices across the country:
A young couple begins to question their pediatrician’s ______ (knowledge, motivation, ethics) regarding vaccines after their baby’s recent _____ (vaccination; series of vaccinations; adverse reaction) to a vaccine.
The timing of this questioning comes soon after the young couple watches their _____ (newborn; 2-, 4-, 6-, 9-, 12-, 15-, 18-, 24-month old) begin to deteriorate.
Show us your shot record, or you don’t get in.
I wouldn’t be surprised if places like Disneyland will soon enact a permanent “public safety” policy that states that its park goers need to prove their vaccination status before entering the park. Don’t believe that won’t happen sometime in the near future? It’s already happened in other places across the country.
Even though 50 states offer one of three vaccine exemptions, school officials play the role of vaccine enforcer. Claiming a ‘No shots? No school!’ rule, many schools cite vaccines are required for enrollment. They not only claim that, but they go so far as bully parents demanding that they are required. That’s not completely true. Before I took the time to learn that that claim was not true and that I had vaccine options that would not jeopardize my child’s education, I kowtowed to vaccine enforcers. I let school officials and school nurses railroad me, and I let their policy trump my parental rights. That happened before I took the time to read the facts myself.
The fact is my child can attend school without a full shot record. They can go just about anywhere without vaccines too. Even to Disney.
Well, for now at least.
It’s being reported that Disney is encouraging unvaccinated children to stay away from their parks. They’re doing that at the same time that they are dismissing employees. Employees cannot return until they have been medically cleared. Sure other places – like schools, will require a doctor’s note to return after a brief illness, but those other places don’t typically offer free measles vaccines nor do they test for immunity that Disney is offering to do for its staff.
Photo credit: screen shot from NBCNews.com
By Cathy Jameson
Before media hysteria became the norm, getting the measles was a punch line. Instead of freaking out, a TV family portrayed what real-life families encountered - surviving a short-lived diseases. These families managed the illness. They responded with common sense. They treated the symptoms and worked around what tended to be a temporary situation.
Things are so different today. Illness is a bad word. What used to be called a common childhood disease is now viewed as impending doom. Fevers, rashes and sicknesses that last longer than a few hours are treated like the plague. Anything that can be passed from one person to another is a death sentence. These types of exaggerations fill many news stories. With those exaggerations, as well as how other fear tactics are used, including the mantra that the almighty vaccine is the answer no matter the question, no wonder people feel anxious about disease today!
“The vaccines work. The vaccines are safe.”
Until they are not.
But so says the vaccine industry. So says those benefitting from its profits. So says mainstream news. And so says Dr. Zahn.
Dr. Zahn, who was recently interviewed about the measles in California, said that vaccines work. He said that they are safe. He said it confidently on national news.
If he’s absolutely sure that vaccines work and that they are safe, why did 11 people of the 26 known measles cases come down with the measles? Those 11 were vaccinated. Those 11 became sick. Those 11 are part of the 26 that are included in the skyrocketing outbreak of a disease that is seeing a resurgence.
How on earth did they catch the measles if they were vaccinated? I wish that Dr. Zahn had touched on that fact because the underlying fear mongering that he and the reporter used in the segment is getting really old. Instead of explaining that for some people, including for those 11 people apparently, vaccines do not work. But, because the industry wants us so desperately to believe that they do, they continue to use words like “skyrocketed”, “outbreak”, and “resurgence” in their reports. They go a step further in their desperation and misuse the word immunized too.
Saying that someone is immunized might lead others to believe that immunity can be gained. Gaining immunity through vaccination is no guarantee. This measles discovery proves that. But Dr. Zahn wants us to believe that vaccines are the answer, and the only answer at that. He states that, “Getting everybody vaccinated is so important…”
I haven’t bought into the Gardasil hype, but because my daughter and her best friends are of the age when this vaccine is heavily pushed, I keep up with HPV vaccine news. For those who may have missed the latest news, the FDA announced that they’ve approved another HPV vaccine.
The news release claims that the new vaccine, Gardasil 9, will prevent “…certain diseases caused by nine types of Human Papillomavirus (HPV)…five more HPV types than Gardasil (previously approved by the FDA).”
It should be noted that the FDA reports that there are over 100 different kinds of HPV. Let’s not forget that they also state that not all of the kinds of HPV cause health problems. Not causing health problems is good news! So why did the NBC News senior health reporter make this her final paragraph of her Gardasil 9 article?
All boys and girls are supposed to get three doses of the vaccine, starting at age 11 or 12. But not enough do. Only a third of girls who should have finished the series have received all three doses, and the record's even worse for boys. While 57 percent of pre-teen or teen girls have received at least one dose of HPV, only 35 percent of boys have, CDC says.
All (emphasis mine) boys and girls are supposed to…
The article makes it sound like getting this vaccine is mandatory.
Last I checked, parents can opt out of vaccines in all 50 states.
Photo credit: NVIC
Yep. All 50 states do offer at least one exemption.
Join a support group. We can suggest a few national groups for you (see our sponsor’s links on the right side of the screen), or you can do a search for autism groups in your area. Support groups are designed to encourage, to aid and to provide resources to its members. Local meet ups, lending libraries and workshops are just a few benefits some support groups offer. When you’ve found a group that meets your needs and views, participate! If getting to meetings or events isn’t possible, find out if your group offer online message boards or social media opportunities. If they do, keep abreast with your groups’ news by joining their Facebook, Twitter or Pinterest pages. The best part of those social media pages is that not only can you network and stay in the loop from the comfort of your home, joining these pages is free.
Attend a Conference. Conferences are another way to stay connected with other parents and advocates in the community. Conferences are offered by various groups and entities throughout the year. The national ones tend to draw in large crowds with big-name presenters. I find that these conferences are quite fulfilling. Gaining accesses to in-the-field practitioners, networking with fellow parents, professionals and persons with autism, and having time to socialize after learning all day is part of the experience. If traveling to the larger conferences is not an option, look for smaller conferences or workshops in your area. Those may be sponsored by therapy clinics, through local support groups or via online webinars.
Contact your Representative. You have needs; your representative has resources. It may not always seem like this, but your representatives work for you. Talk to them. Find out what they’ve supported and what they’ve sponsored. Tell them what you need them to do for you. Take a few minutes to stop in their local office to introduce yourself. Get to know the staffers, especially the health staffers, so that you can build a positive relationship. Then, send emails. Send tweets. Join their Facebook conversations. One click, one phone call, one FB ‘like’ lets them know that you are actively engaged. Stay engaged in what’s on their radar in the hopes that they, in turn, can know what’s on yours.
Other news sources will sometimes showcase their top stories toward the end of the year, so I thought we’d also showcase some of our accomplishments.
They, as well as our other Contributing Editors and guest writers, added hundreds of articles to the website. Here are just a few of the top articles that we featured:
Adriana Gamondes kicked off the beginning of 2014 with a post about the Man Flu
Julie Obradovic’s Public Enemy Number One: White Suburban Educated Moms
Katie Wright’s recap of one of the IACC meetings
Dan Olmsted’s Weekly Wrap about the MMR vaccine, the CDC whistleblower and a torrent of leaks
J.B. Handley wrote a short and sweet message to the CDC whistleblower and his lawyers telling them to speak up!
Natalie Palumbo’s response to Elizabeth Cohen
Kim Stagliano’s response to Jerry Seinfeld’s interview on NBC
John Stone’s article that connected the dots between the CDC and a fugitive
Kent Heckenlively’s The Hammer Falls! post
Anne Dachel’s reminder to the media that they won’t be able to ignore us for too much longer
Cathy Jameson’s letter to Nancy Grace
Teresa Conrick’s Part 1: The Epicenter, which began a series of articles on the Microbiome
AofA’s Top Conversations
I wanted Ronan to join us for the Christmas festivities, but I knew not to get my hopes up. In the past, he's preferred to stay away from everything that makes Christmas special - the family gathering, the feast, the presents. Those are the things that make Christmas so exciting for me. But Ronan isn't interested in any of them. He’d rather shy away from the noise, the crowd, and the excitement to do his own thing.
Past Christmases have been overwhelming for Ronan. This past Christmas was no different. Ronan kept to himself for a majority of the day. I kept hoping that he'd emerge, but he preferred solitude. He found that in another room on the other side of the house.
Ronan had had some seizures right before Christmas. He was not sleeping well. And he was completely off of his routine. Ronan needed space, he needed quiet, and he required no expectations to join us. I longed for Ronan to be a part of our family Christmas, but he only wanted peace and quiet.
Peace and quiet was what Ronan got.
Ronan stayed upstairs while we gathered around the tree. He played Wii while the rest of us exchanged presents. He looked at his Dr. Seuss books while we cooked the feast. He stayed a safe distance that he determined was ideal. He was happy with his activities and with the peace and quiet.
As much as we would have liked for Ronan to join in the fun we were having, we knew and respected that that wasn’t going to happen. Our day was full of wonder and delight - the family gathering, the feast, the presents, and knowing that Ronan was safe and he was happy. We enjoyed our day, and Ronan enjoyed his. It was perfect.
Ronan’s birthday is today. He’s twelve.
Happy birthday, Ronan.
Each year around this time, I expect to turn off some of my emotions. Each year I fail to do that. Birthdays should be happy occasions. But my soon-to-be 12-year old is oblivious as to what a birthday means. Yes, he’s aware of the excitement that some of today will bring, but he won’t know to be excited until his siblings start talking about cake. Whenever they talk about cake, Ronan’s ears perk up. He loves cake so much that it was one of the first words Ronan wrote independently.
Beyond the cake, beyond the eating something yummy, the other parts of the birthday celebration—the presents, the party, the turning a year old—don’t interest Ronan.
For many, birthdays are a big deal. They celebrate being a year older. A year wiser. A year closer to independence.
Not when you’re a prone to wandering and a diaper wearing, unable to speak for himself, dress himself, bathe himself or feed himself 12-year old.
While I expect that he might be more verbal, more typical or slightly more aware each December 21st, I see that Ronan is not. My other children, including my youngest, have zoomed quickly past Ronan’s current development. They continue to accomplish skill after skill after skill. They do that while I wait and hope and pray that Ronan will one day accomplish what they can do so easily. I don’t ever put pressure on Ronan about those delays or about catching up. But I don’t do myself any favors by dwelling on them, especially dwelling on them on today.
The expectations I had for Ronan when he was a baby are far different than the reality that he’s living now. The expectations I had may be different, but they will never get in the way of the support I give Ronan. That’s why I will to keep my emotions in check today. I will do that because today is Ronan’s birthday. It’s his birthday, and it is time to celebrate. It is time to be happy. It is time to make a wish and to believe that it will come true.
We owe a debt of gratitude to Tony Lyons, Publisher at Skyhorse Publishing in New York. His committment to books about autism is..... well - why don't we let him tell you himself. (Thank you to The Thinking Moms' Revolution for the video.)
We will feature one Skyhorse book each day for the next 12 days. Consider it a literary Advent Calendar or a Menorah with twelve lights... or more.
The Thinking Moms' Revolution: Autism beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue Their Children
The Thinking Moms’ Revolution (TMR) is a group of twenty-three moms (and one awesome dad) from Montana to Malaysia who all have children with developmental disabilities. Initially collaborating online about therapies, biomedical intervention, alternative medicine, special diets, and doctors on the cutting edge of treatment approaches to an array of chronic and developmental disabilities, such as autism, sensory processing disorders, food allergies, ADHD, asthma, and seizures, they've come together into something far more substantial. Suspecting that some of the main causes may be overused medicines, vaccinations, environmental toxins, and processed foods, they began a mission to help reverse the effects. In the process, they became a tight-knit family dedicated to helping their kids shed their diagnoses.
Here, collected by Helen Conroy and Lisa Joyce Goes, are the stories of their fights to recover their kids from autism and related disorders. With each chapter written by a different TMR member, they share how they discovered each other, what they learned from each other, and why it’s important to have close friends who understand what it's like to parent a child with special needs. You'll read about the their experiences, and learn how their determination and friendships have become a daily motivation for parents worldwide.
By Cathy Jameson
Ronan’s brother, Little Buddy, was struggling with some math homework on Thursday night. After checking his work, I reached for an eraser and erased the incorrect answers. Little Buddy went back to the table to redo the problems. He redid them, but they were incorrect again. I asked him to fix them one more time, but Little Buddy was getting frustrated and started to cry. I asked him why he was crying. “Mom, I made so many mistakes!” I told him, “Mistakes are allowed. That’s why God invented erasers,” and then handed him the eraser.
I could tell that wasn’t the answer he wanted. I sat down with Little Buddy and said, “Honey, is Mommy perfect? Daddy? Anyone? No, only God is. He makes no mistakes. Man does. Man makes mistakes all of the time. Some of those mistakes can be fixed—like this math paper. You’re lucky that you get a second chance to work on this. So erase the mistakes and try again. And remember, when this homework is done, move onto something else.”
Erase the mistakes, try again, move on.
If I could only take my own advice.
As the parent of a vaccine-injured child, moving on is hard to do. Before that sounds like an excuse, if you are not the parent, sibling or in some way provide personal support to a family raising a vaccine-injured child, it is hard to erase what happened. Negative effects of a vaccine injury linger for a long time afterward. Those negative effects don’t just go away. They complicate the situation. They add to the problem. They have the potential to multiply too.
The negatives of Ronan’s vaccine injury—the delays, the secondary illnesses, the behaviors, the emotional trauma that crept in, that seeped in and that stuck around—may never be erased. But, like so many other families who have a child like mine, I do what I can to reduce some of the negatives and what that they brought with them. I’d rather erase a lot of what happened to Ronan and have the chance to start over. I know that that isn’t entirely possible, but other people have the opportunity to not even have to start over. The following is a message for them:
When it came to getting my child vaccinated, I wasn’t prepared. I wasn’t prepared to ask questions about the vaccine process. I wasn’t prepared to ask about each and every vaccine suggested. I wasn’t prepared about what happens when there is a problem post vaccination. I wasn’t prepared for what happened after saying yes to vaccines. I wasn’t prepared to say no, thank you to vaccines either, something that I had the right to say and now wish that I’d said.
Adding insult to injury…vaccine injury that is.
If you’ve followed our story, you know that my son, Ronan, was vaccine injured several years ago. I fully accept that I didn’t know everything that I should have known about vaccines when Ronan was a baby. Had I known more then, I do believe that his life would be a lot different now.
What is life like for Ronan now?
Ronan is almost 12 years old and is non-verbal. He is in diapers. He cannot take care of himself. He is prone to wander. He has seizures. And he has regressive autism. I know that I cannot erase what happened to Ronan. I know that I should keep my eyes focused on the future instead. But because of what happened to Ronan all those years ago, and how what happened to him continues to affect him and his future, ignoring the past is not possible.
Before I catch you up on the latest insult we’re dealing with, a few words about vaccine injury and why it’s the gift that keeps on giving.
Vaccine injury and adverse effects from vaccinations are nothing new. It’s just that that information isn’t broadcasted as much as it should be. Vaccine side effects include, but are not limited to:
Swelling at injection site
Sudden Infant Death Syndrome
Upper respiratory tract infection
Pretty scary list, huh?
Flu shot advertising must have gone into high gear again recently. I’ve noticed more outdoor signs being added to the lawns and sidewalk areas of several grocery stores and big box pharmacies in parts of my community. Customers will literally trip over signs if they’re not paying attention.
Those signs, and the automated phone call from our pharmacy on Friday morning reinforced something I try to forget: it’s flu shot season. I honestly don’t think flu shot season ever ended though. One of the smaller pharmacies in town keeps their Flu Shots Available Here banner up year-round. I don’t like to give that place my business and use another pharmacy in another part of town.
That other pharmacy called me Friday morning with an automated message. Ronan’s seizure medication was ready to be picked up. Before I could hang up, the message continued. “…after you pick up your prescription, remember that all of our pharmacies offer flu shots. No need to make an appointment. Walk ins are welcome!”
Gee, let me run right down there and ask a complete stranger jab me with this year’s flu shot. Wheeee!
Nah. I know better than to blindly roll up my sleeve or sniff that mist up my nose. I know better than to get a flu shot at my pharmacy too. I’ve thought about that, but the last time I was in our pharmacy, I asked some questions that couldn’t be answered.
I wanted to ask the pharmacy tech a little bit about the flu shot.
She was busy. I was not.
She was trying to rush me. I wouldn’t let her.
Even though I know a lot about the flu shot already, I wanted to ask her more questions. I also wanted to see the package insert. The pharmacy tech tried to pawn the VIS off on me.
“No, the package insert, please.” I said, “It has much more information on it…like who manufactured the vaccine…and what adverse reactions I should look for…”
Managing Editors Note: I've heard of some very popular boy band called "One Direction." I couldn't hum a single bar of their music. No idea what they look like. But I like their name because it reminds me of the Age of Autism team. We move in ONE DIRECTION. Forward. While many around us dwell in negatives, in the past, in what's "wrong" with our community and pontificate on and write some seriously nasty gaaaaah-bage as my Mom would say in Boston, our team has been "busy, busy, busy" writing books. Actual books that can never be rescinded, removed or retracted. Old school. BOOKS. The volume of volumes is dare I say? Voluminous! (Humor me, it's the end of a long weekend.....)
Special congrats to our Editor Dan Olmsted and Editor at Large Mark Blaxill on the February debut of Vaccines 2.0: The Careful Parents' Guide to Making Safe Vaccination Choices for Your Family.
We hope that you will buy one or two, perhaps more, of these books. Yes, money is tight. But I can promise you that each and every book will help you as you work with your loved ones with autism, as you discuss the needs of our community with medical providers and politicians and will give you hope that we will all move in ONE DIRECTION. Forward. Like a train.
Vaccines 2.0: by Mark Blaxill and Dan Olmsted The Careful Parent's Guide to Making Safe Vaccination Choices for Your Family
Plague by Kent Heckenlively and Dr. Judy Mikovits - One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases
The Big Autism Cover Up by Anne Dachel - How and Why the Media Is Lying to the American Public
Vaccine Injuries by Louis Conte and Tony Lyons - Reveals the truth behind the controversial issue of vaccine-related injuries.
The Autism War - a Novel by Louis Conte - Tony Colletti, a good suburban cop and father of a child with autism, finds himself drawn into the controversy over the apparent but rarely acknowledged connection between childhood vaccines and autism. His quest to uncover the truth forces him to risk all he holds dear while confronting corrupt government officials, the powerful pharmaceutical industry, and disturbing elements of his own past.
The Vaccine Court by Wayne Rohde - The Dark Truth of America's Vaccine Injury Compensation Program
Finding Lina by Helena Hjalmarsson - A Mother's Journey from Autism to Hope
Saving Ben: by Dan Burns A Father's Story of Autism
The Thinking Moms' Revolution - Autism beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue Their Children
Cathy has a day off with her family. She wrote this post last November. Enjoy.
By Cathy Jameson
This picture of my boys was taken a year ago. Ronan, in the green sweatshirt, stopped moving long enough to sit down and look straight into the camera. Sitting proudly next to Ronan is his younger brother, Little Buddy. Little Buddy, who was also injured by his vaccines but has recovered, plays more of a big brother role than Ronan is capable.
Little Buddy prays daily for Ronan hoping he too will be free of his vaccine injury. He hopes that Ronan will be healed so that he can talk and so that they can play together. With a heart bursting with pride, love and devotion, Little Buddy has enlisted his classmates to pray also. Together, they offer special intentions for Ronan’s health and healing. I need to take a lesson in Little Buddy’s devotion and perseverance because lately, I am having a hard time seeing too many positives in Ronan’s situation.
I certainly have some things to be thankful for today, but I would be remiss if I didn’t admit that I feel much more worry than thanks. We’ve had to handle some uncomfortable issues lately: wandering, an increase in seizures, stagnation of skills and negative behavioral concerns.
I have been less than thankful for the many reminders of what’s making Ronan’s life more difficult. Those difficulties, and the reality of Ronan’s vaccine injury and autism diagnosis, have me riding an emotional roller coaster. Time heals all wounds, though, right?
If I give it a few days…
If I shake the worry while looking for a bright side…
If I let some of the nagging go…
If I hope for the best…
I’ve been able to get to the library a lot more than I have in previous years. I love being surrounded by the books, the periodicals and the quiet time the library offers. Sometimes I go to the library to sit and read or write. When I’m there, I don’t always check out material. Anytime I’m there, even if it’s for just a quick visit, I make it a habit to walk down to the 600 section to see if the Thinking Moms’ Revolution book is there. I’m always hoping it’s checked out, but if it’s on the shelf, I make sure to give it a proper display.
The TMR book - displayed with the cover out and hanging out with books that I may or may not have rearranged so that they can be closer together.
I had a purpose for going to the library last week. I was on the search for some books for one of my kids’ teachers. The class is studying the heart and the lungs, so I offered to get some books to supplement the textbook chapter with whatever I could find in the children’s section. I was not prepared for what I discovered in the children’s “science” section. I saw several books about shots and vaccines and why kids need to get them. Books about how shots won’t hurt. How it’s just a little pinch. And that everyone has to get them. Everyone.
I looked up and down that shelving unit for other books about other shot and vaccine topics. You know what those important topics are. And you know what those books would be titled also:
When Shots Go Wrong
Read the Fine Print: Vaccine Side Effects and Adverse Reactions
What To Do Now That You’ve Been Vaccine Injured
Head Banging, Feces Smearing and Non-Verbal Communication: What It All Means
How to Tell to Your Siblings About Your Vaccine Injury
Why Mommy and Daddy Have to File a Claim in Vaccine Court
Since I couldn’t find those titles, I went back to thumbing through the books about shots that my library did have. Oh, the indoctrination!
The promise of a Band-Aid.
Too bad band aids can’t make life-long vaccine injuries go away.
“Why you must be…a healthy, five-year-old!”
Shots keep you healthy and strong. Unless they hurt, injure or kill you.
By the time this article goes to post, Ronan will be done with a 48-hour EEG. He was admitted Friday for testing because medication is not working as we’d hoped and his seizures have increased. We appreciate good thoughts and healing prayers as we continue to work through his vaccine injury and while we rethink better treatment options.
Dear Nancy Grace,
I watched a clip from your Monday, November 3, 2014, show and wanted to send you a letter. I could see that you were shocked about something and would like to add to what you asked Becky Estepp to explain to you in plain terms.
I’m glad you asked for further explanation of such an important topic. More people need to know that they cannot sue vaccine manufacturers if they encounter a problem with a vaccine. Not being able to take legal action for something that is pushed so heavily is an unfortunate truth.
I’m sure you’ve had a chance by now to visit the U. S. Department of Health and Human Services webpage that explains what the National Vaccine Injury Compensation Program is. Anyone contemplating a vaccine should take time to read through that site and understand what that program entails. It includes crucial information that isn’t overly advertised like vaccines are.
One the website, you saw what the US government recognizes as a vaccine injury. You read about the steps it takes to file a claim and learn about the “Vaccine Court” process. You saw the breakdown of past claims. You caught sight of several charts and a statistic report. You read about an excise tax, a tax paid by vaccine consumers that the government uses to pay claims. I hope you also clicked on the link that shows how much has been compensated (which, as of November 3, 2014, is $3,021,080,103.09) to the vaccine injured and to families who’ve lost a loved one due to a vaccine.
Now, I don’t think I’ve seen any first-hand accounts from families on that particular website, but you can contact me if you want to hear my family’s experience with that program. Fair warning: our experience was terrible. Terrible!
Here is some of our story.
My son, Ronan, was a happy, typical baby. We saw seizure activity after Ronan received the flu shot and have been dealing with the nightmare that comes with seizures ever since. Other vaccine injuries, recognized by the government, were also the result of vaccines. When I discovered that those injuries were linked to vaccinations and could confirm them, I was encouraged to file a claim. I did so believing that the program would on our side.
How wrong I was.
Drugmakers are looking for some kind of indemnity from governments or multilateral agencies against possible losses or claims arising from the widespread emergency use of new Ebola vaccines in Africa.
I did a double take when I read the opening paragraph of this Reuter’s article last week.
“…looking for some kind of indeminity…”
Indemnity? For a vaccine? Don’t drugmakers, especially the ones that make vaccine, already have indemnity?
But it stops at the border.
I reread the paragraph and realized ohhhh, these drugmakers, who already have oodles of protection from the United States government, want to use that protection elsewhere—overseas. Kudos for thinking ahead, but I have to ask, if a company has to ask for the kind of protection these drugmakers are asking, should they be making that product, especially if it’s going into humans?
You’d think that protecting the consumer would be better practice. But, it sounds like drugmakers, who are seeking to expand their vaccine wares to other countries, are again only looking out for themselves.
Drugmakers that provide vaccines here in the US have been granted a no responsibility ticket when it comes to their vaccines. It protects not only those who create the vaccines, but protects those who administer them also. Simply put, manufacturers and medical providers can make and give all the vaccines they want. They are never held accountable for any of them, including the vaccines that harm or kill people.
Most other products consumers buy come with some sort of consumer protection. Nothing of the kind exists for vaccines. Here’s what we get, or don’t get, from vaccines:
We aren’t offered exactly what’s advertised.
We don’t get a guarantee that vaccines provide immunity.
I wasn’t expecting to see any breaking news Thursday night right before I went to bed, but breaking news was happening. CNN had just reported a confirmed case of Ebola.
Oh, boy. Here we go again, I thought.
I know I’m not the only one shaking my head at what I’ve deemed as breaking news lately. The headlines and the knee-jerk reactions being reported have been downright laughable.
I mean no disrespect to those who’ve been directly affected by Ebola, but the regular news headlines have been riddled with hype and fear for quite a few weeks now. Because of that, I’ve stopped going to certain news sites. I even stopped reading about Ebola. I need facts, not fear. I want tips, not terror. I want straight up answers not scared-out-of-my-mind thoughts running through my head right before I go to bed. But that’s what’s being published in news stories and the follow up news stories lately:
Patient might have Ebola! Oops. She doesn’t.
Pentagon entrance closed—is it a possible Ebola victim? Nope, she wasn’t.
Man vomiting—he may have Ebola! Our bad. Dude just had a tummy ache.
I know that the media uses headlines to draw in its readers and viewers, but how they were hyping what didn’t need to be hyped was getting a bit ridiculous. Until it wasn’t.
Thursday night, things got serious. And I’m not talking about the Ebola virus.
Did you see it?
While reading the CNN article, something caught my eye. I saw it three times within the article and found it quite disturbing.
A Doctors Without Borders physician who recently returned to New York from West Africa has tested positive for the Ebola virus, a law enforcement official briefed on the matter told CNN.
Investigators took the case seriously from the outset because it appeared the doctor didn't quarantine himself following his return, the law enforcement official said
The law enforcement official said the doctor was out in public. Authorities also quarantined his girlfriend, with whom he was spending time since his return from Africa.
Now, I was worried about Ebola just like a lot of people are, but I’ve been keeping my wits about me and using common sense to protect my family and to keep as healthy as I can. After reading that article, what I’m more worried about is that law enforcement has stepped in.
Law enforcement and health care. We’ve seen that mix before. Remember Justina Pelletier? And you’ve heard the latest medical cases where authorities have stepped in, right? Two sisters, a baby, and a boy named Jaxon now have to deal with more than just their medical issues. Somehow, instead of getting necessary support, it seems that an authority figure muscled their way into the situation. Law enforcement got involved. If you followed Justina’s story like many of us here did, you asked yourself over and over again, how did any of that involvement help her? It didn’t.
Mixing law enforcement and health care doesn’t seem to have such great outcomes. So why are law enforcements joining the Ebola situation? How’d they get involved? What exactly are they monitoring? More importantly, who’s providing their services? And, well done, CNN, for adding that law enforcement bit so seamlessly in your article so as not to raise too much of a concern! But I have a few questions now that it’s been brought up:
Was law enforcement called in because the US didn’t take precautionary steps early enough?
Was it because the US didn’t close the borders in a timely fashion and opened a further threat on its citizens?
Were they on standby when this situation got more serious, or is this another knee-jerk reaction to quell fears the media is attempting to broadcast?
I met a young woman at a car dealership just about two years ago. I was there to get an oil change. She and her family were car shopping. Sitting in the child play area with two of my kids, the young woman parked her stroller opposite of where we were sitting and unbuckled her boys. She got her toddler and baby settled with some toys while her husband remained with a sales clerk to discuss cars.
I stole a few glances at the woman. She was pregnant. Trying to calculate her boys' ages, I thought to myself, Wow, soon to be three kids under the age of three. Just like I had.
Thinking back to my early days of parenting, I remembered how busy I was. How tiring it was. And sometimes how old I felt. This woman so young. She too so busy. But she didn’t have time to be tired. She was keeping tabs on her boys and sat down with them when they sat to play. She jumped up when one scooted off to a different corner of the room. She also stayed one step ahead of her other son he wanted to explore what lay beyond the play area.
The older boy reminded me of my brother when my brother was a baby—tan skin, curls, deliciously round cheeks. And happy. Her older son was so happy. I found myself giggling as I watched him.
The young woman and I made eye contact and said a polite hello. She tried to apologize for how quickly her boys took over the play area. I told her not to worry. I had five kids, also close in age. Her sons were a delight and certainly not a bother. I picked up a magazine but continued to steal glances of her children as I read. I was drawn to them.
The oil change was taking longer than usual. The automotive rep came over and apologized for how long things were taking. He added that it would be a little bit longer. I didn't mind. In fact, I was glad to have a reason to stick around. I felt an overwhelming urge to talk to the young mom. I get that feeling every now and then, that I'm in the right place at the right time. But it’s not for my benefit; it’s tends to be someone else's.
As you open your eyes this morning, even if your day started at some ridiculous hour because of your child, I had a thought I needed to share with you: no one but you knows what it takes to be the mother of a child like yours. No one understands his health needs like you do. No one prepares his enzymes, supplements or allergen-free foods like you have done for years. No one sits through hours of therapy appointments like you have and will continue to do. No one stays up late at night reading message boards discussing speech therapy, parasite protocols and IEP meeting strategy. No one. What you do for that child of yours is amazing.
Today is your day. Enjoy it. Soak in it. Revel in the attention. You might be showered with millions of smiles accompanied with hand-made gifts from your typical kids. You might receive flowers to brighten your day. A box of chocolates wrapped just right will taste delicious as you savor its tasty indulgence. Someone, or several someones are shining today’s spotlight on you. Take it all in today. Be that typical Mother you still dream of being to all of your children because tomorrow you will return to reality. A reality where no one truly knows what it takes to be a mother of a child like yours.
No one knows your child inside and out like you do. No one sees his potential like you do. No one feels excitement from a milestone achieved like you do. No one shouts to the rooftops about his gains like you do. No one stands prouder for that child than you. With your support and encouragement you have earned the chance to shine alongside your child.
When the shine fades, as it has in certain situations, you better believe no one knows your child like you do. No one has the keen sense of hearing you do that lets you know a door has been opened that should have been locked. No one hears your child’s painful cry and can instantly pinpoint what is bothering him like you do. No one suffers silently like you do when he’s been rejected by his peers on the playground. No one knows that child of yours like you do.
That child has formed your thoughts, your passion and your actions. That child has created parts of you that can never be removed. Mother that child. Mother him well. Mother him even on the days that are excruciating, unbearable and endless. Mother him when you feel like you can’t take it anymore. Mother him when you think you feel like you are on the verge of walking away. Mother him because no one else knows your child like you do.
Your child brought you to where you are today. Your child is the link to another Mother’s discovery that her child is also sick and needs help. Your child is the focus of another Mother’s determination. Your child’s progress and gains have become the key for another Mother to unlock her child’s lost skills. Your child is shaping the future of another. What a feeling that must be!
You might not be on the receiving end of knowing how your child affects another person. But, you are appreciated for what you do and for what you say. You are stronger than you believe you are. You are braver than you think you are. You are Mother to a beautiful being. Believe in that child. Do as much as you can for that child. Do as much as you can but always remember to take care of yourself along the way.
By Cathy Jameson
It is with great sadness that we report that Melanie Baldwin has passed away. Only recently being re-diagnosed with breast cancer, Melanie now leaves behind her husband, Tim, and their son, Luke.
From The Thinking Moms’ Revolution:
An amazing woman by the name of Melanie Hamilton Baldwin changed the face of autism and cancer culture by telling her story to thousands as "Booty Kicker" in the Thinking Moms' Revolution's book, Autism Beyond the Spectrum.
For anyone who knew Melanie, two words come to mind. “Faithful” and “Godly.” She lived her life fully and cared deeply. Melanie dedicated her life to caring for Luke, her affected son. Luke requires 24/7 care and attention as he is self-injurious and quite ill, suffering the lingering effects of severe autism.
TMR has set up a fund for Luke’s care. Please consider donating generously to help Melanie’s family establish financial security that will help Luke thrive during her absence.
GiveForward page: Melanie Baldwin.
Note: 10/6 - we share with a heavy heart - Melanied has died. Get your affairs in order, plan as if tomorrow IS th future for your child. And know that as a community of like minded autism parents, we will look out for one another and for each others' children. KS
By Cathy Jameson
A friend of mine is in the hospital. She’s battling cancer. Breast cancer struck a third time and has turned life a little bit upside down for Melanie, aka Booty Kicker, from the Thinking Moms’ Revolution. She’s fought cancer twice already now and beat it. We’re all cheering for her to kick cancer’s butt one more time. She has to. Her son, Luke, needs her.
Being in a hospital undergoing tests and treatment is likely taking an enormous physical toll on Melanie. The emotional toll of being separated from her family must certainly be taxing too. My heart goes out to Melanie as she has had to depend on other people to not only care for her, but to also look after Luke. Luke is severely affected by autism. With limited language and needing round-the-clock care, Melanie has been his primary caregiver for years now. My son, Ronan, is also severely affected by autism, and I, too, am his primary caregiver. Our children depend on us to be 100% on every day, all day and sometimes all through the night.
Many in our community have reached out to help Melanie’s family. The compassionate responses and generous giving has been overwhelming in a good way. It’s balanced other emotions that many of us have felt including one of the scariest emotions: fear. I think many of us have felt fear at one time or another with the biggest fear being what will happen if I’m not around to help my child.
Our community thrives on hope though, including offering hope to Melanie. People within our autism circles, and strangers from a great distance, have pitched in offering prayers, kind words and financial support. They’ve provided daily encouragement and gotten people from non-autism circles to also help. There is a GiveForward campaign to help raise money for her family. This leap-into-action response has me in tears—tears of relief and tears of joy. I pray that our efforts and those of complete strangers who’ve identified with Melanie’s story will carry Melanie through the tough days and until she’s able to be with her family again.
“Never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.”
You’ve probably seen a shortened Churchill quote a few times in this community. If you’re on FaceBook and have “liked” the National Autism Association page, you’ll have seen that quote referenced quite a few times. Their infographics, memes and messages frequently remind us to keep our chins up.
Not every day is an easy day for some of our families, but with the encouragement of my friends, including several NAA members I’ve gotten to know, I do find myself able to look at the bright side of things. Life is easier when I find something, even if it’s one tiny small thing, positive.
Sadly, a few days ago, it came to my attention that something negative had happened to our friends at the NAA. Their Facebook page was hacked. Presumable taken over by internet trolls, the admin of the National Autism Association page can no longer access their FB page. Worse, whoever had access to the page this weekend posted inappropriate posts.
Who does this? Who cyberbullies and publicly attacks an organization who’s dedicated their time and energy to helping families in need? Not just any family, but families caring for individuals with autism?
The NAA’s mission is “…to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.” They’ve carried out their mission well and helped many of us in the autism community. They’ve gone out of their way to help me and my son directly.
A recipient of The Big Red Box, http://nationalautismassociation.org/big-red-safety-box/ Ronan is safer because of the NAA’s efforts to reduce autism-related wandering. The NAA has helped thousands of families.
Today, it’s our turn to help.
NOTE: We're just days away from the start of National Bully Prevention Month. Seems an appropriate time to bring back this "Best of" by Cathy from last October given the recent situation with the CDC Whistleblower and Rob Schneider.
By Cathy Jameson
October is National Bully Prevention Month. It is National Vaccine Injury Month.
Here are some recent vaccine-related news articles posted on the web during October:
High Court Orders Two Sister Must Receive MMR Vaccine
Announcing UK Government Considering Mandatory Whooping Cough Vaccine for Newborns
Flu Shots During Pregnancy Reduce Autism Risk
Could A Vaccines for PTSD Protect Soldier?
Gates Foundation Introduces Trendy New Bracelets as Ridiculous Marketing Ploy to Push Vaccines
My head spins when I see headlines like those above. But, to the average reader, they may truly not know why some of the content of those stories are absolutely ridiculous. The reader may not be aware of the many risks of vaccinating or realize how much money goes into this industry. This happens when mainstream news refuses to offer both sides of the vaccine story.
I get several phone calls and emails every month from parents asking for help when they see similar headlines in the news. I get questions like: What can I do when my doctor isn’t listening to me? Why is my doctor bullying me about this? What do I say if I don’t want all those shots? What should I bring to the appointment to prove what he’s saying about vaccines and autism is wrong? I let parents know that the best thing that they can, and should do, is to learn as much as they can. I tell them to be ready to speak up when it’s time and to never forget it’s their child—not the doctor’s, that they are bringing into the exam room. I also suggest to these parents to read. Read. Read. Read. Read. Read. And then read some more. Knowledge truly is power, and applying that knowledge can be very powerful.
In the past, the places I spend the most time discussing vaccines, vaccine safety and how autism is linked to vaccines occurs in an exam room with one of my son’s medical providers as well as on blogs, message boards and in the comments of web-based articles. In the exam room, some doctors and medical staff are adamant about “No vaccines? No service.” Fine! I say. I’d rather take my children to someone else who actually respects them and their health. It may be more costly to find a different provider, but their life is absolutely worth it.
Online discussions about vaccines can be no different. Depending on the vaccine topic or fact being discussed, reported or distorted, I’ve run into hostile individuals who refuse to hear me out. “You don’t like them? Conversation OVER.” I learned the hard way that some people aren’t worth engaging. Fortunately, the last encounter I had with someone online who rudely represented the pro-vaccine camp hasn’t had a repeat. Easily I could have decided to never discuss vaccines online again with how negative that interaction was. But I decided I wouldn’t walk away completely. I can’t because those quietly witnessing the conversation later seek me out offline. Not wanting to chime in directly, they ask questions behind the scenes and appreciate my perspective as the parent of a vaccine-injured child and ask for advice.
New parents on the scene, the lurkers who’ve just made the autism-vaccine link discovery, are listening intently to those conversations. Those lurkers are sometimes on the fence about the decision they face. Some of them want solid answers and would expect them from professionals they trust. But how do they trust someone who’s banking off of their medical decisions: Should I vaccinate? I think I might. Maybe not all at once though like my friend did with her kid. He’s been so sick after all those shots and now has autism. Doctors say the autism has nothing to the shots, but I know it wasn’t there before the shots. What if I don’t vaccinate? My doctor keeps badgering me like I’m doing something wrong. I hate it. He always says, “You know your baby best…” and then hounds me to do what he wants to do. He says my kids have to have all these shots, SO many of them, to get into school. I called the school and they take vaccine exemptions, so why is my doctor pressuring me so badly?
New parents have questions. New parents want answers. What’s a new parent, or any parent for that matter, to do as they start asking what seems like an innocent question about vaccines either in the exam room or on the internet?
# 1 – Do stay calm. Online trolls love vaccine drama. Pharma shills do too. They get off on their wordsmithing, their debating skills and how much of your time they can waste. If it’s in the exam room that you raise a question or concern, and if it’s an ill-informed doctor or pushy nurse you’re up against, be prepared well ahead of time with what you want to ask, say or point out. Because your knowledge directly benefits your child’s health, stay calm, know your stuff and be ready to stand your ground. Keep in mind that some practices benefit from doling out pharmaceutical products. The more you know about where your doctor’s loyalty lies, the stronger you can be with the decisions or statements you want to make.
I couldn’t find the right words last week. Today, I feel like I’ve found my voice again.
In reflecting on a few things that had me feeling so down in the dumps earlier, a few people came to mind: the pro-vaccine crowd, the CDC, the mainstream media and some doctors and their medical staff. When those folks crossed my mind, I let them and their negativity invade my thoughts. I wouldn’t be here without them though, so I thought it time to say thank you to those folks. Yes. A thank you. I want to express my gratitude for their contributions, especially their latest ones.
To the Pro-Vaccine Crowd who continues to add insult to injury (vaccine injury, that is), thank you! Really. I want to thank you for every new Vaccines Are Safe blog, article, interview, FB comment and social media message you share. Why? Well, for some new parents, and for those parents who are on the fence about vaccines, your words spark a question. They’re asking, “Are vaccines really all that safe?” That questions leads to a search. That search turns into a discovery. That discovery reveals a story—a story of a child with an unfortunate vaccine injury. As they read that story, a seed is planted—a seed of doubt. Why doubt? Because you, the pro-vaccine crowd, say the exact opposite, and quite brusquely I might add, of what the vaccine injury story is stating. It’s no wonder that new parents are thinking that maybe vaccines aren’t safe!
It’s through that revelation and that seed of doubt that parents begin to search for further info, info which you, the pro-vaccine crowd, consistently neglects to mention in your pieces. Parents want that information. Where must they turn then to find that info? To other parents, of course!
P.S. That’s where I come in.
Here’s why. When I write, it’s with honesty and it’s peppered with all sorts of undeniable facts. When you write, as a pharma-influenced blogger, writer or newscaster, it’s heartless and glorifies an entity that’s using humans for profit. It’s only right that people hear both sides of a vaccine story—yours, which confuses them, and mine, which is told through the eyes of a former vaccinator who now provides round-the-clock care to a child who was severely affected by vaccines.
Obviously, our stories and motives differ greatly. My story is told with heart and includes an extra-large dose of vaccine-injury reality. Your input portray vaccines as safe all the time for everyone no matter what. Even though you forget to mention everything there is about vaccines, like that pesky vaccine injury, I don’t mind filling that in the blanks in my writing when you forgot to mention it in yours.
Many times when I sit down to type I know exactly what I want to write. But there are days like today that leave me feeling like I have no idea what to write. It isn’t because I’ve run out of things to say. Sharing stories about Ronan’s gains and offering my two cents about the autism-vaccine connection is important. I’d like to continue to share my thoughts, but not today. Today, I’m at a loss for words. I’m at a loss at what else needs to be said. Everything that needs to be said has been said already.
Here, and on other alternative media channels we’ve talked about vaccines. We’ve talked about autism. We’ve talked about too many too soon. We’ve talked about Vaccine Court, corruption, shady practices and about twisted politicians. We’ve listed fact after fact after fact and told story after story after story. Even though we’ve said a lot already, those facts and those stories don’t seem to be enough.
I know it’s not up to just me to inform or to encourage others to educate themselves. But with what I’ve learned through my son’s vaccine injury, sharing what I can about that vaccine injury and about autism has become second nature. I can’t help but share. I tell the good, the bad and the very, very ugly. Sometimes it hurts to share what I do, but people usually appreciate my honesty. Some people prefer to see and hear only happy autism stories though. Magazines and television channels prefer to share only happy autism stories. I’m glad those stories exist. I live for happy stories and to be able to share Ronan’s happy stories. But there is a flip side of autism. It includes vaccine injury.
Vaccine injury has been around for quite some time, but it’s still being ignored. It’s being ignored despite its growing presence. Something else that’s being ignored is the general public’s real concerns about vaccines. Those concerns are being dismissed by providers and are being downplayed by the government. The public isn’t being given all of the answers. They are being bullied and belittled instead. They aren’t being told about vaccine choice and vaccine exemptions. They aren’t being told that vaccine manufacturers are not held liable for vaccine injury. To scoff at vaccine injury is dangerous. To minimize it while ridiculing people who asking important questions about it is disrespectful.
We were ignored again this week. Another major broadcasting station aired a pro-vaccine piece midweek. In the midst of the CDC whistleblower news that hasn’t been rated as Breaking News yet, the public was fed more propaganda. I’m not surprised. While turning their attention away from the truth, this station choose to instill fibs and fear at a fever pitch.
Laugh till you cry. Cry because it hurts. Push through the pain. Rise up, and try again.
My head is spinning. The last two weeks have been pretty intense. A CDC whistleblower stepped forward and revealed jaw-dropping news. I’m trying to grasp everything that is being reported and wondering what’s going to happen next.
As usual, the reporting of this breaking news isn’t from mainstream media. Their reports, when they decide to respond, lack truth. They lack basic facts and lack accurate information. The reporters themselves are also anything but helpful. They lack integrity and continue to be uneducated vaccine mouthpieces unable to show basic skills like compassion. In the few news reports and articles that have popped up since Dr. William Thompson went public with alarming information about a CDC study, mainstream sources have ignored evidence and instead targeted parents as the bad guy. Not only have they criticized parents, they’ve also lobbed condescending remarks at them. This tactic and behavior is abhorrent.
I don’t know if I’ll ever understand why some groups and some people in the media resort to such madness. I do my best to not getting riled up when I see another inaccurate report or ignorant reporter respond. I turn away from anything mainstream and go listen to some of music. For now, mentally running away from the madness is the easiest way to deal with it. It’s either that or cry myself into a deep, deep sleep.
In learning what I have, that a CDC scientist has come forward with damning information about data manipulation, the emotional gamut I’ve experienced has done a number on me.
At first I wanted to laugh. Really.
And why not? We parents have we’ve been verbally insulted for so long. To finally have someone admit what we’ve suspected, no, known, was a relief. But the laughing was short lived. Fraud, lies and our destroying childhoods are no laughing matter. So, I laughed…until I cried.
As more of the CDC whistleblower story is revealed, I continue to cry.
I appreciate this revelation and the confirmation that yes, vaccines do cause autism, but it won’t change Ronan’s future. It won’t make his autism go away. His autism was an unwelcomed side effect from vaccines, ones that I believed in. I think the hardest thing to grasp is that even though the news we’re hearing is good (Finally! Truth! Justice! Vindication!), it is just so devastatingly awful. What hurts the most is that the ramifications of the fraud Thompson is claiming to have happened has influenced so many people, including me.
I believed in what scientists like Thompson were publishing. I relied on their science, those vaccines and in the CDC’s unwavering stance that those vaccines were good for my child. I heard their message, and I trusted it.
In trusting someone else and in putting faith in something else, I betrayed my mother’s intuition. It was there. It nagged me. It told me to slow down, back away, think things through, mama. But I told that nagging feeling to shush. Surely my doctor, my nurse and my government knew more than I.
How wrong I was.
One after the other after the other, vaccines didn’t help Ronan. They never gave him any immunity. They didn’t make him healthier either. With each and every one, vaccines did more irreparable harm than good.
Vaccines created a toxic toll for my son. He lost skills. He lost language. He lost the chance to live like a typical kid. Ronan’s development hit rock bottom. So, while even though Dr. Thompson’s information is important and must absolutely be investigated, it doesn’t make me hopeful. It won’t make Ronan’s voice come back. It will not bring his typical health back either. Yes, it’s a dream come true to hear that we were right and they were not, but saying that will not erase the nightmares we as a family have already lived.
Ronan started school this week. He was severely affected by vaccines. He’s non-verbal, completely dependent on others and has autism. Because of other medical issues that stemmed from the vaccine injury, Ronan’s on a modified school day only able to attend school for a few hours a day and only a few days a week. Before this school year started, I dropped off some paperwork to the school: Ronan’s health care plan, his seizure plan and his vaccine exemption form. Until I’m assured that vaccines truly are safe and effective, that vaccine exemption form will accompany him each year until he graduates.
Back-to-school letters from school administration typically include a cheerful welcome. An announcement or two about what to expect on the first day back and a kind request to drop off school supplies including any remaining forms might be added in the letter too. Ronan’s school recently sent out a back-to-school announcement. Included was a memo about ‘back-to-school’ shots with a message that made it sound like he had to get them or he wouldn’t be allowed to attend school. I appreciate the gentle reminder to wrap up our summer fun, but I do not care to be told incomplete and inaccurate information. I especially don’t like it when that sort of information is demanded as the tone of the messages I received most certainly was a demand.
With the opportunity schools have with the large population they serve, instead of properly educating parents that vaccines are optional, I find that they’ve misinterpreted laws, altered wording and have been allowed to make absurd vaccine demands without any reprimand. I find these vaccine demands both troubling and fascinating. Troubling because some people would never think to question a school policy and fascinating because literature parents are given elsewhere about vaccines state otherwise:
Why are dictator-like demands being handed down to parents? To say get-vaccines-or-your-child-can’t-come-to-school is untrue. And honestly, it’s dangerous. Fortunately, for those who cannot or do not want to get vaccines, due to contraindications to medical conditions or because of religious belief for example, opting out of vaccines is possible. (Opting out is actually a terrible term to use because, for the majority in the US, vaccines on the CDC’s schedule are merely recommended. But, for lack of a better term, school admin, school nurses and medical providers will, or should be, familiar with what opting out means.)
In 48 states, up to three types of vaccine exemptions exist. Check this map from National Vaccine Information Center (NVIC) http://www.nvic.org/ to see how to opt out of ‘school shots’.
It’s a shame that parents feel the vaccine heat from schools. Instead of focusing on administering first aid when it’s necessary, school nurses have been allowed to become school shot Nazis.
Vaccines can be gotten almost everywhere these days—in big box stores, at a chain pharmacy, on school campuses and in many doctor’s offices. Some work places even schedule special ‘clinics’ during the year, typically during the flu shot season, to administer vaccines. Just because vaccines are available doesn’t mean we all have to run out to get them.
Many people inadvertently think they need to get vaccines. The CDC continues to think and promote that and stated as such last week. That inaccuracy popped out at me in the response they gave about Dr. Thompson’s recent allegations.
In their statement regarding the data Drs. William Thomspon, Frank DeStafano, Tanya Karapurkar-Bhasin, Marshalyn Yeargin-Allsop, and Coleen Boyle used in a commonly cited CDC study, a study which is now being reported as fraudulent, the CDC said:
“The study looked at different age groups: children vaccinated by 18 months, 24 months, and 36 months. The findings revealed that vaccination between 24 and 36 months was slightly more common among children with autism, and that association was strongest among children 3-5 years of age. The authors reported this finding was most likely a result of immunization requirements for preschool special education program attendance in children with autism.”(emphasis mine)
What jumped out at me while reading their entire statement was not an admittance of fraud, because it seems that the CDC does not consider the altering of data as deceptive, what caught my eye was that particular paragraph where the CDC says that immunizations are required for school. A lot of places say that immunizations are required for school. Except, they’re not.
The state of Georgia, where we’ve been told this particular study’s data was collected, offered vaccine exemptions including during the time that this study was conducted. For the CDC to say that immunizations are requirements for school attendance, when in fact they are not, frightens me. No one, especially a parent, should be told one thing as fact and not be given all of the facts. To leave out selective information, especially information that impacts a child’s health is bad practice. Not only that, I think it’s unethical.
Vaccines cause autism. Or, is it vaccines result in autism?
You say tomato. I say to-mah-to.
Cause it. Result in it. Vaccines did it. You know it. I know it. And now, come to find out, our government apparently knew it too.
For years now more than enough people have suggested that vaccines cause autism. Several have tried to prove it. Try as they might, those who should have acknowledged it have turned a blind eye. Not only did they do that, but they adamantly defended themselves with skewed statistics. News of these skewed statistics came from someone working at the CDC. The CDC’s slogan is Saving Lives. Protecting People. After last week’s news I can’t help but ask whose lives were they trying to save? Their own? Whose lives were they protecting? Themselves?
Relying on paperwork instead of listening to those who’ve been negatively affected by vaccines has kept officials’ heads in the clouds. Having their heads in the clouds gives them a free pass. It looks like that free pass was used by several people. According to the whistleblower, they didn’t factually report their findings. They didn’t accurately inform the public. They didn’t reveal dangers associated with vaccines. They didn’t publicly state the truth. That vaccines come with risks. That they’re loaded with side effects. That they don’t offer lifelong immunity. And that they cause autism.
Mind you that none of this information is new; it’s just kept so hush hush that unless you or a loved one has experienced a vaccine injury, it goes under the radar. Only when vaccine injury hits close to home is one forced to go back, read the fine print and put two and two together. Unfortunately, at that point, they’re left to fend for themselves. When vaccines cause autism, a vaccine injured is left high and dry. That’s because the vaccines industry is protected by the government, the same government that evidently knew that vaccines cause autism. Rather than looking out for and protecting the ones they’re meant to serve, the vaccine industry and those who oversee it have chosen to protect each other.
When my thirteen-year old daughter was six, she was at the magical age of "Mommy, when I grow up I'm going to be a ballerina, veterinarian, singer and baseball player. Oh, yes, I want to be a Mommy too. What do you want to be?" Gosh, if I had energy to be all of that I'd join Fiona in her fun. Most days I just want to take a nap, not do anymore work!
Fiona is heading into her teenage years. Pretend play has been replaced with reading novels, playing video games and hanging out with friends. Even though Fiona has outgrown most of the toys, her younger siblings are still knee-deep in pretend play. We both watch the younger siblings scatter her hand-me-down toys around the house taking turns making up the next imaginary adventure. During the school year, with a heavier workload than the littles have, Fiona will sometimes complain about how they get too loud and take over not just the playroom but the living and dining rooms as well. I remind Fiona that it wasn't so long ago that she too played as heartily as they do. She'll get a gleam in her eye and say, "Oh, yeah. I remember." We both laugh while also shaking our heads. When homework isn't as tough and when deadlines for projects aren't looming overhead, I encourage Fiona to take a break and jump in and play. She doesn't miss a beat and enjoys feeling like a little kid again.
It's fun to pretend and imagine ourselves elsewhere. On days when things get really tough, like during one of Ronan's meltdowns after he’s lashed out and pulled her hair, I know that sometimes Fiona longs to be somewhere else. She’d rather be with her typical friends in their quieter homes. Those friends have never been asked to take over seizure watch while their mom runs to the bathroom. They don't have to help change their 11-year-old brother's stinky diaper. They don't have to sit in waiting rooms for 30-60 minute stretches feeling as if time is standing still. While she's reading news stories about autism and asking questions about mito disease, some of her friends are posting pictures to Instagram and sends texts about a favorite pop star or television show. Fiona’s in a different place, worried about different things. Her experiences are very different than those of her peers, but I’m positive those experience will take her farther in life with good purpose.
I can see why Fiona wants to hang out elsewhere--on the very tough days, I sometimes want to run away too. We don't always have the luxury of getting her to social events with classmates but recognize how important it is to get some sort of respite from being the big sister. Just as I need some down time, so does she. To say thanks and to give her some time away, Fiona will get to do something fun out in town on the weekend with just Daddy. She'll get to stay up later to watch a medical documentary or a film about World War II. Other nights she and I will have chips and salsa while we look at her old baby pictures. Those nights bring the most giggles as we look back in time. That’s when life wasn’t as busy, when it wasn’t as stressful and her head was filled with playful dreams she couldn’t wait to fulfill.
This post is dedicated to “Us Four”. Always in my thoughts, forever in my heart.
Jennifer and I met in a small town in Texas and went to high school together. A class behind me, she was a talented artist, competitive runner and one of my best friends. She is frequently in my thoughts and came to mind on again on August 7th. That was her birthday. She would have been 42.
I left Texas soon after graduating and attended college on the east coast. Having made many fun memories as goofy teenagers, Jennifer and I weren’t going to let a little bit of distance end our friendship. In the early 1990s, we kept in touch through letters and phone calls. When I could, I would return to Texas to visit. I always enjoyed meeting up with Jennifer and another best friend of ours who was still in town. On those trips, for the week or so that we were back together, life was good. But, when I went back to college, I would get a nagging feeling.
That nagging feeling would oftentimes be correct. Jennifer revealed in letters that she’d slipped back into depression. She’d experienced bouts of heavy depression that would cripple her. Some bouts lasted a few days; others took weeks to overcome. In her letters Jennifer promised me that I shouldn’t worry. Of course I did—Jennifer had struggled with depression almost as long as I’d known her which included much of high school. I made sure to follow up with a phone call after receiving one of Jennifer’s depressing letters. Thankfully, she’d have bounced back by the time I’d called to check on her.
Over the next year or so, as fewer letters were written and shorter phone calls were made, distance had finally wedged itself in. I was busy with school projects, worked part-time and was involved in a new social scene. Life was in full swing for me. Sadly, it was plummeting in reverse for Jennifer. Unaware of what she was going through, a friend sent news that Jennifer had passed away. The news of her death came after the funeral. It was too late for me to help.
Jennifer’s death, one that was self-inflicted, haunted me for many years. I don’t know if it was shock, or that I refused to believe that she was gone, or if it was because I didn’t have closure to say good bye, but I had a hard time believing that her life was over. As hard as it was to accept that she was gone, part of me was not surprised though.
Jennifer’s depression was well known in our small circle of friends. She’d made other suicide attempts in high school, but they’d failed. As grown up as I thought I was at 16-years old, nothing prepared me to live through terrifying moments of finding a note telling us that life was not worth living. Three of us stayed close to Jennifer ready to catch her when she fell. We didn’t like to think about or talk about what Jennifer was going through, but I knew we should just in case more dark thoughts entered her mind. Thinking to myself, will she or won’t kill herself today became part of life.
Every one of my Jennifer’s suicide attempt rattled me to my core, but I always tried to remain strong on the outside even though I trembled like a small child on the inside. In reflecting on Jennifer’s death and why it took me so long to come to terms with it reminded me of other events in my life. Like how it took me so long to believe that my own child’s vaccine injury was real. That may not sound like it could be compared to suicide, but just like how I tried to understand why Jennifer’s depression racked her mentally, emotionally and physically, it took a great amount effort for me to understand, and accept, just how real and crippling vaccine injury could also be.
Summer has officially begun now that all of my children are on school vacation. If this summer came with a wish, I'd wish for lazy days and lots of them. I am not a morning person so having an alarm-clock free start to my day is going to be great. My oldest already appreciates the end of her homeschooling lessons and has her sights set on hanging out with friends at the pool. My younger children are excited to have extra LEGO building time as well as more frequent trips to the park. Because I've got chalk dust in my veins, I'll still provide educational opportunities for my kids and have plans for some fun circle time games and books sometime between a late breakfast and a picnic lunch. We've all had a really busy year so I happily welcome a break from the intensity of the regular school year.
Keeping my typical kids active during the summer is not usually a major challenge. I pick a few summer camps, short day trips and plan lots of play dates to keep them busy. I try to balance their needs with Ronan's time consuming appointments that take no time off despite the summer season. His therapy sessions and medical appointments happen year-round so it's not unusual to find all us squished into waiting rooms or driving the long drive to his far away but necessary specialists.
My kids are used to scheduling fun their fun after Ronan's must-get-to appointments. Finding down time for them is essential for their well-being and for my sanity. I am sensitive to how Ronan's sibs manage and express themselves as their brother fills up many of my thoughts and much of my time. I'm grateful that my typical kids don't complain about this or see him as interruption to their activities. They accept that most of his behaviors are just who Ronan is and readily open their minds to adapt to his needs and sometimes erratic behavior. I wish I had that level of acceptance because I'm sure it would decrease my stress level greatly.
With what I hope is a more carefree routine ahead of us for the next two months I wonder if I can reduce some of the worry I carry all year long. I'll be honest, Ronan and his special needs fill up most of every stress I have. Vacation from school and time off from our very full schedule should lead to a more relaxed attitude but I don't know if I can actually fully relax. If I could, maybe that would free up some of the over thinking I do about Ronan. Imagine what I could do for myself with extra time! Maybe I can catch up on some projects I've put off. Maybe I can get more writing done. Maybe I have longer than the five minutes of clothes shopping I allow myself to do at the $4 sale racks at those Super Box stores. Maybe I will do nothing extra or unusual during summer vacation because Ronan's issues also no break in our regular routine--keeping him safe and healthy is a 24/7 job; it doesn't matter if it's summertime or not.
Ronan has gotten himself into a few scary situations even though I am hyper-vigilant about his safety. Despite the very secure locks and safety precautions I have in place Ronan is a very smart and abled child who is able to manipulate our locks. I'm not sure why Ronan prefers to be on the other side of the front door, but he does. He has learned to ignore the door chime alarms. He has made up his mind that sitting in Daddy's car in the driveway is much more fun than playing with every toy he owns in his bedroom. Ronan's safety is a constant worry of mine. That constant worry leaves no extra down time and no time to really relax during any season of the year. Keeping my guard up at all times is my only assurance that Ronan is exactly where he's supposed to be.
Is it progress that Ronan has figured out gizmos and gadgets? Is it a higher level of thinking that will allow him to be later mainstreamed with his typical peers? Is it a step forward to know that hide and seek is a new game of Ronan's even though the seeker (me) is ready to call 9-1-1 to ask for assistance to find a child who doesn't understand he's headed to grave danger? Or, is it a sense of adventure that typical little boys crave and act on? That would be neat if it was just typical behavior because I do know there is some typical in Ronan--I see it, I hear it and I sense it on his really good days that don't include my constant monitoring and worrying.
"To promote the right to individual health choice and stand up for the victims of medical injury."
I scheduled my typical children’s dental appointments over their summer vacation. Sitting in a dentist’s office for two and a half hours on a sunny afternoon wasn’t on my top 10 things to do while on summer vacation list. Neither was defending medical choices I’m forced to make for my kids. But that’s what ended up happening on a hot July day.
I shouldn’t joke. Taking four children to our dental provider really isn’t that difficult; it’s more time consuming than anything. After a terrible experience with another dental group in town, I’m grateful that our current dentist knows us well. The staff listens to me. They respect me. They understand why I’ve made the medical decisions I’ve made for my children. It’s comforting that they recognize that some of my kids are medically fragile. What’s considered “industry standard” by some can send my children into a downward spiral with potentially long-lasting ill effects.
So, smack dab in the middle of summer vacation was just as good a day as any to bring my kids in for a teeth cleaning. I was prepared for the long afternoon and made sure to bring things for my kids to do while their siblings’ teeth were checked. Just when I thought it would be business as usual, a new dental hygienist greeted us in the waiting room. I wasn’t aware that the one whom I’d made a great connection with (she too had a young child with developmental delays) had recently left the practice.
Politely introducing myself and my two older children whom she’d be working with, I felt somewhat exposed talking to the new hygienist. Stating pertinent health and medical issues my children had, I went through a list of things we usually request.
Will she judge me? Will she understand why things must be a certain way? Will she give me any flack for what I want done versus what she’s used to doing?
Those questions raced through my mind as the hygienist opened the children’s dental files. Inspecting my children’s files, she began to ask me pointed questions the dentist and the previous hygienist knew not to ask us any longer.
“That’s correct,” I stated.
Sealants? It says here that you were thinking about them.
Actually, I was thinking about NOT doing them.
I smiled while trying to sound confident, “No, thanks. We won’t be doing those.”
For the quick second it took for the hygienist to look down at the medical records, I took over the conversation.
“My daughter just got out of braces so this will be her first cleaning without any orthodontic gear. Please use the gluten-free toothpaste and let me know how her teeth look now that the braces are off.”
The hygienist closed the files and said, “Okay, she can come back with me now.”
Whew! Interrogation over…
Can I ask you something?
“Um…yes?” I stammered.
Why don’t you want sealants?
I felt like I was backed into a corner. I had two choices: I could answer her honestly or grab my children and run while yelling, “Leave us alone, you nosey Nellie!”
Note: Cathy has a well deserved weekend OFF. Happy summer!
By Cathy Jameson
Ronan has a vaccine injury, mitochondrial disease and seizures. He can’t talk or use the bathroom on his own. He can’t be left unattended or perform typical daily living skills. Ronan requires a special diet, round-the-clock care and a team of professionals to teach him. He has another team to medically treat him and to support him. He’s a severely affected child. I’ve known all of this for a long time now, but nothing could prepare me for a day like last Thursday. That’s the day Ronan’s adaptive stroller arrived. The stroller, while it will be very useful and will allow Ronan to see more of the world, is a reminder that he remains very dependent and sometimes, very weak. Ronan just can’t keep up like other children can.
When I was growing up in the 1970s and 80s, I knew only of a few children who had as severe issues as Ronan does. Poor neurological developmental cases were not among them. One boy in my K-8th grade elementary school was physically disabled and used a wheelchair. A friend’s younger brother had gross motor delays and needed physical therapy. Out of everyone I knew or knew of, only one child’s issues demanded intensive, long-term medical care. Don’t get me wrong. Other kids that I knew needed care or equipment and were in and out of the doctor’s office. But more times than not, the equipment were crutches, and the doctor visits were to treat broken bones or get stitches after a hard day of play. Their pain and medical management was temporary. Children’s health forty years ago wasn’t fragile like that of today’s generation. And unless they were being hidden, cases of severely affected children were drastically fewer than what exist today.
As I stepped into adulthood in the early 90s, I prepared for my career in the education field. Only then was I introduced to children like Ronan. While real, these children were unknown to me personally. They were highlighted in case studies that I was assigned to read in journals found on the shelves of my college library. These children and their diagnoses were quite rare. So was the number of cases of them. Fascinated by how out-of-character their significant struggles and troubles were compared to children I encountered in my childhood, I felt sympathy for their parents. It wouldn’t hit me until after Ronan’s diagnosis in the mid 2000s what those parents went through.
I normally play a movie for Ronan once he’s buckled into his car seat, but I turned the radio on instead.
There’s a lady who’s sure all that glitters is gold
And she’s buying a stairway to heaven.
When she gets there she knows, if the stores are all close
With a word she can get what she came for.
Ooh, ooh, and she’s buying a stairway to heaven.
Led Zeppelin's Stairway to Heaven had just started. “Nothing’s glittering with gold around here,” I grumbled. Sweat, tears and frustration were more like it.
Ronan had just had a 15-minute meltdown. It began right after he’d woken up. It intensified when he refused to get out of bed. It became physical when he decided he didn’t want to leave his bedroom. It worsened when he resisted getting into the car for school.
Wake up time is not usually difficult. Thursday morning would be like other mornings. Or so I thought. Ronan began to stir just after 9am. I let him slowly wake. At 9:15 I pulled the covers back. It was time to get up, change, grab a bite to eat and head to school.
Our morning started out peacefully, but the peace and calm lasted for only about 30 seconds.
I sat on Ronan’s bed as he stirred awake and greeted him with a smile saying, “Time to get up!”
He signed NO and put a blanket over his face.
“Come on, Buddy. Let me change your diaper and get you into play clothes,” I continued.
A hand emerged from the covers. NO.
Still buried under blankets and now his pillow, I managed to get Ronan’s diaper changed and his shorts on. Trying to get his socks on wasn’t going to be as easy. Ronan began to kick his legs and pull them under the covers. It took a little bit longer, but I said to Ronan cheerily, “One sock on. Now the other one.”
Ronan was not pleased. He signed NO, NO, NO. Then he rolled over.
He usually offers some assistance in getting dressed, but he didn’t want to help Thursday morning. “Almost done!” I sang out.
What usually takes less than five minutes took just over ten. We had no time to waste—it was Ronan’s last day of school.
“Come on, honey. We need to go,” I pleaded. Seeing that he wanted to stay snuggled under his covers I promised him he could bring his favorite blankie when he got up. I also said he could pick a movie to watch on the way to school if he would cooperate with me.
NO, NO, NO!
Two of my friends are pregnant. Both are in their 40s. Both have a typical child. Both also have a child on the spectrum. Both have been enthusiastically congratulated. I was happily shocked to learn of each of these pregnancies. Then I was excited. It’s almost as if these pregnancies are a first-time pregnancy. With all that these Moms have already gone through, they sort of are first-time pregnancies.
No longer will Mom be timid about what typically happens in a regular OB office.
She is so much more informed!
No longer will Mom let one person dictate all that she must do.
She knows she has other options!
No longer will Mom allow a medical professional trump her mother’s intuition.
She now has experience, knowledge and confidence on her side!
In each case, Mom knows so much more. She knows how to ask for certain things. She also knows how to politely yet firmly decline others. Mom wants so many things to be different and better. Yes, better. Better for her and better for her unborn child.
Part of me is worried for my friends. Being pregnant now, compared to ten or fifteen years ago when youth was on their side, will surely be different. According to literature, they’re OLD. Old means tired, exhausted, fragile. But, knowing these women and their personalities, old is just an adjective, and would never be the first one I’d use to describe them.
Both Moms are active in their other children’s lives. They are both movers and shakers in their own communities. They are both looked up to, respected and sought out for advice. Who better than an already inspiring woman to bring new life…and hope to our world.
Sure, I’m a little worried for my friends, but I’m downright giddy that these two women are pregnant. I’m more excited for these pregnancies than other. They will be far different than that of the younger people in my life. The younger people are having their first and second children and are clinging to every word, statistic and procedure their medical provider tells them. Then, their children are taken to every appointment that the powers that be have dictated. When pictures are shared, I see darkened circles under baby’s eyes and hear of food allergies, eczema, early speech problems and endless sleepless nights. Red flags are waving violently behind baby but Mom has yet to connect the dots or see the destructive path her children are walking.
Ronan had a spectacular Fourth of July this year. Because his day was good, mine was too.
Instead of being disappointed like I was this time last year, we, meaning me, had already taken it down a notch as far as holiday expectations were concerned. In past years I would have wanted to cram as much fun as possible on a day off. This year, we picked one thing that Ronan could do and that he could do well.
Our family had a few options— play tourist in the big city looking at the sights, hang out with friends across town, or stick around in our own neighborhood joining other families down the street for a block party. All were equally exciting opportunities for us, but we decided that staying closer to home would be the best option.
Being steps away from the amenities of our own home (and all of Ronan’s ‘must-have’ like his iPad, allergy-free foods, favorite movies and such) gave us the chance to celebrate our nation’s birthday with ease. Being well prepared for whatever situation presented itself once we arrived to our neighbor’s house, and the fact that Ronan was willing to do something different, played a big role in the success of our day. Ronan had fun. He played in the pool with the big kids. I had the freedom to actually sit and visit with people. Ronan was melt-down free. He ate a full meal without any fuss which means I ate a full meal with hardly any interruptions. I even had a few conversations with neighbors that I was able to start and finish. I didn’t need to pull out any of our Plan B, or C, or D tricks because Plan A was working so well!
Off to celebrate! Ronan had his headphones, his safe foods and a means to get there and back without tiring.
As I was sitting in my church pew last week feeling sorry for myself, I felt as if I got hit over the head. I don’t know how he does it, but it feels as if my priest is speaking directly to me when I’m sliding into a mental funk. He has a way of knocking much-needed sense into me when I least expect it. Apparently, I needed a good smack upside my head since last weekend’s homily was no exception.
I have constantly struggled with having and not having a diagnosis for Ronan. Clearly the child has some issues. A few years ago I was only worried about finding out what to call it. I had settled for vaccine-induced autism but had a nagging feeling it was more than that. Was it a deadly chromosomal abnormality? Maybe it was epilepsy? Was it really autism? Could it be one of those mitochondrial diseases? We’ve asked top-rated doctors, conducted über-expensive testing and finally did receive a diagnosis. I thought I would be able to accept Ronan’s mitochondrial disease diagnosis for it took years to be identified. I’d waited a long time to hear an official diagnosis but I didn’t expect to hear that it had features of autism. Great. It’s one thing but acts like another.
Not a day goes by without my thinking, is it just autism though? I can recall doing massive web searches back in the early 2000s when Ronan was a toddler. I distinctly remember reading about autism and thought to myself, no, that’s not my son. I even went so far as hoping it would rather be more like Asperger’s, not just autism, because children with Asperger’s had higher levels of language abilities. I looked further at what the spectrum included and thought, w-e-l-l, maybe it is autism but then Ronan was never 100% fully on that spectrum all the time. He would swing back and forth with one day being more cognitively aware than another. He has words but uses them oh, so sparingly. He can take apart many things but hasn’t the fine motor capability or patience to put things back together yet. As Ronan spiraled further away from me and deeper into whatever it was that he had, my thoughts were of what Ronan couldn’t do, and I couldn’t free myself from those thoughts.
Little did I know that what I sought was freedom from some negative aspects of being Ronan’s Mom. I’d love to have freedom from a diagnosis, any diagnosis. I yearn to be free of the stressors of being full-time advocate to a little boy with all his special needs. I ache to be liberated from the worry, the pain, the limitation, the speculations and the judgment of others. That type of freedom, freedom from, holds me back from the freedom to.
By Cathy Jameson
Hush, now. It’s okay. Close your eyes. Sleep. Shhhhh, she whispers. Shhhh….
A young mom is quietly lulling her toddler to sleep. They are sitting in the pew in front of me at Church. She holds him gently in her arms while stroking his hair. At the end of the pew is the woman’s husband. He is handsome, relaxed and proud of his family. He glances over at his wife, reaches for and touches her shoulder. On either side of the young mother are the toddler’s older siblings. Ages 7, 5 and 2, this family’s children appear healthy, happy and typical. Subconsciously, I smile. I think about how perfect they look and how lucky they are.
I see families like this one often. Normal moms. Typical kids. Regular dads. I walk past them at the grocery store, in parking lots and around our community. I take in the ease of their movements and the liveliness of their conversations. As I watch and listen to them, I long to experience what I think they have—freedom.
Do they see what I see?
Do they appreciate what they have?
Do they realize how fortunate they are?
They are free of seizures, of wandering and having to draft IEP goals. They are not ruled by weekly therapy appointments, on-going doctor visits and support groups. Their schedule is theirs to create as they wish. I know I’m just a stranger looking in, and I realize that I see only a fraction of their day, but as an outside looking in, I can tell that their life is very different than the one I live.
Normal moms. Typical kids. Regular dads. I used to be that person, living like those people and participating in their lifestyle. I don’t run in their circles now, and they rarely step into mine.
Years of managing my son’s vaccine-injury and the medical issues that came with it has done a number on me. On days when Ronan’s health takes a turn for the worse, not only does he tank, but I do too. I’m no longer the relaxed mom who thinks she can take everything in stride. I panic. I mentally run away. I become hyper-vigilant, overstressed and sometimes a tad judgmental.
I think back to when this all started. I want to curse my foolishness and the choices I made. I close my eyes remembering the past and can’t help but wonder how different life would be if what happened to Ronan really didn’t happen. Some days I even wish that this wasn’t happening. Pretending that things would magically return to what I considered normal won’t help. That’s when things can go from bad to worse.
On those very tough days, my thoughts become clouded and my hopes are crushed. It’s hard to be hopeful when my child’s life is documented in a case file, in multiple case files actually. Lots of people would agree that it’s better to have a positive attitude. But with all that I have had to overcome, and with how children are still being vaccine injured like Ronan was, my heart isn’t always in the right place. And sometimes it stays somewhat hardened. I feel it harden more in certain situations.
As much as I try to not let it affect me, my heart hardens when I learn that typical moms choose to follow the same steps I took that I wish I’d never taken.
I’ve seen quite a few quizzes posted on Facebook lately. From What Kind of Animal Should You Get? to Which TV Mom Are You? and Where Should You Live?, people are letting an algorithm tell them something they probably already know. These quizzes are usually done for pure entertainment purposes, but many people are quite proud of the results and post them for others to see:
“Dog. Of course! I love love love my dog!”
“Sweet! I got Mrs. Brady. She’s always been my favorite J”
“Texas! Been here all my life and have no plans of leaving!”
As silly and fun as these quizzes are, I wonder if parents were given a real quiz, say at their child’s “well-baby” visit, could they answer the questions correctly. They’d be simple questions, as you will soon see, but, I wonder if people would have the vaccine knowledge to answer the quiz correctly. There’s only one way to find out.
Go ahead. Take the quiz:
What Do You Know About Vaccines?
1. What are the vaccine laws in your state?
2. Does your state mandate that all children get all vaccines to enter school?
3. What is a vaccine exemption and who can get one?
4. If your state has a vaccine exemption, which one(s) can be granted?
d) none of the above
5. If you are being bullied into getting vaccines, either from your medical provider or from a school nurse, what action(s) can you take?