This post is dedicated to those brave parents who came before us. Thank you for blazing a trail.
Ginger Taylor’s Facebook status earlier this week caught my eye. For those who do not know Ginger (see here) or the work she does in our community, normally, she is the one offering help. This week, she was asking for it.
ATTENTION PARENTS WHO HAVE BEEN DOING THIS CRAP LONGER THAN I HAVE!!!
In 2004 when I got here, we met in yahoo groups to figure out what the hell had happened to our children, and how to help them... remember?
Any one remember those groups? Where we all meeting for autism biomed info BEFORE Evidence of Harm came out?
I HAVE TO FIND THOSE MESSAGES! The first mom who helped me... I have to find her and thank her! It was on one of those boards!
That year I, too, began to ask others for help. I knew that Ronan’s doctor wasn’t going to be the one to provide the answers that I needed, so I did what so many other parents had to do: reached out to the world wide web for guidance.
Like Ginger, I joined, read, and began referencing hundreds of posts on message boards. With the information I would find and read online, I’d later run over to our local community college library to continue to read. I read scientific journals. I scanned through medical textbooks. I requested books through the state’s interlibrary loan system. I checked out the few autism books available at the time and searched other neurological conditions while continuing to read and reference information on the web.
I love it when I find a helpful book, magazine, or resource that I can share with others. I love it even more when I can contribute to that helpful resource. That’s happened a few times outside of what I share here on Age of Autism. I’m always grateful for the opportunity to share my thoughts and my family’s experience other places. I am especially grateful when I get to do that within the pages of The Autism File Magazine.
One of Ronan’s doctors saw a recent issue of the magazine that showcased Ronan on the front cover. She asked for a copy of it, so I told her I’d print the article for her. She said that would be great, but she really wanted a framed copy of the front cover photo. She wanted to hang it in the waiting room of her clinic so that all of her patients could see it. I can’t tell you how honored I was to know that one of Ronan’s most helpful providers wanted to show us off.
Other Age of Autism writers and long-time AofA supporters have also been featured in The Autism File Magazine, too. If you haven’t seen this magazine yet, here’s a description of the publication from their website:
Since the first issue of the magazine appeared in 1999, the Autism File has been described by readers as a “lifeline”. “Thanks to the most knowledgeable experts and experienced parents from around the world, we’re able to present cutting-edge content and critically needed support to families affected by autism,” said the magazine’s founder and Editor-in-Chief, Polly Tommey. “The new digital format will allow parents and professionals—no matter where they live—to have immediate access to the crucial information provided by our contributors.”
Note: Thank you to Miss Fiona Jameson, daughter of our own Cathy Jameson, for this wonderful post.
By Fiona Jameson
The topic of a person’s worth came up during a recent discussion in one of my high school classes. We were talking about how some people assume that kids with disabilities are not able to think because they have cognitive developmental delays. That assumption is false.
Kids with disabilities are able to think. Some kids with disabilities have some level of being able to choose for themselves. Some are able to ask for help and can also express emotions. I thought this was a great topic to discuss because it pertained to a very interesting lesson and because my brother has given me insight about it.
The teacher and my classmates know a little bit about my brother, Ronan. They know that he has autism and that he is non-verbal. They know that he needs help with lots of things like going to the bathroom, getting dressed, and being safe. I think that’s why the teacher asked me specifically during our discussion, “Fiona, do you think Ronan is able to form thoughts in his mind?” I immediately thought about how Ronan gets a thought in his head, like that he wants to eat a cookie, and he acts on that thought by asking for help to get the cookie. I was excited to answer her, “Yes, he is!” I was excited also because I felt like the teacher actually understood Ronan and understood why it was important for me to talk about him in class.
I’ve been able to share more of Ronan’s story in class. I share that he has value just like I and my classmates do. Some people look at Ronan and might think that he doesn’t know how to act around other people or do things like “normal” people. Well, sometimes, Ronan doesn’t know how to act around other people or do things like “normal” people. That’s where I tell people that Ronan may be different, but he’s still a person. He’s just as important and worth being given respect just like you, me, and everyone else.
Ronan is worth fighting for. He’s worth being cared for even if it takes a lot of time and money. He is worth being loved for who he is. As his sister, I’ll make sure that someone always fights for him, cares for him, and loves him.
Fiona Jameson is a freshman in high school. She loves to play volleyball and had a successful season playing on the JV team. Fiona hopes to be a photographer, interior designer, baker, professional volleyball player, and a Mom when she grows up.
I noticed something the other day. I talk a lot. I talk more now than ever before. It’s not all the time that I’m a Chatty Cathy, but when I’m with Ronan, I don’t shut up. I am still somewhat reserved other times like when it comes to first-time meet and greets with new people that I get to meet. Other times, though, I’d rather sit at the back of the group, out of sight and nestled a corner or in the back row. I can’t do that when it comes to taking care of Ronan, though. That’s when I don’t mind sticking my neck out to be seen. Nor do I mind raising my voice so that I can be heard.
I realized how much I talk when I’m with Ronan when he and I started out last week to get to an appointment. I caught myself non-stop talking while I was holding Ronan’s hand. As we walked into the therapist’s waiting room I said, “Keep going, you’re almost there, step over the toys, careful…careful. Sit down, hold on, stay with Mommy. You did it!” After we sat, I stayed close to Ronan stroking his back while we waited for his name to be called.
The video playing on the television was a tad loud, as were the other patients and their siblings who were also in the waiting room, so I leaned in and quietly spoke to Ronan, “You like this movie? It’s called ‘Cars 2.’ Remember we saw it at the theatre with Daddy. Oh, look! That part made you laugh. Hey, it’s your turn now. Stand up, let’s go. Come on, watch your step. Down the hallway, here you go! Okay, bye now, Buddy. I’ll see you in a little bit. Kiss.”
How many times have I done that—given a play-by-play of exactly who, what, where, when and why? And did I really need to narrate the entire trip into the clinic and into the therapy room? Did Ronan care that I was observing and noting all sorts of things as we went? Did he see all of it as we went by? Did he hear it? Of course, he heard it. But, I wonder, does Ronan tune me out like he seems to tune out so many other things in his environment?
Why do I think I need to state every step and every action? I guess part of it is because I’ve had to remind Ronan several times about the same thing (walk OVER the toy, not ON it; and put your cup in the sink, NOT the trash can). Maybe I talk so much because I want a little bit of feedback. Ronan has some sort of understanding of what’s going on in the world, but, since he’s still just barely pre-verbal, the only reliable feedback I get is from me as I talk to myself.
Who knows, though, maybe with all this chit chat that I do for Ronan will have him one day spontaneously respond, “Ma, cut it out. Okay? I can do it by myself now. Watch me.”
I already knew that I rolled out a constant narrative other places. These situations are different than the daily action-packed descriptions that I just realized that I do. For the other times, I’m consciously aware of what I’m saying. In fact, if I don’t speak up I feel like it’s a disservice to Ronan. Like when I take Ronan to a social outing at a busy park or to a fun gathering for my typical children. Before a genuinely curious but terribly mannered kid has a chance to rudely stare or squawk at the strange-acting child (mine) I start a dialogue with Ronan, “Hey, Buddy. Do you want to go over there? (reaching for Ronan’s hand and walking him to the jungle gym). Hold my hand. Let’s go! Steady now. We’re almost there. You’ll love to climb that.” And off I scurry with Ronan—hoping to be far away from the gawking kid who, was never told that staring at other people is rude, and closer to more activities that Ronan is able to do at his own rate with success.
Of course, it could be a wonderful learning moment for the staring child to know why Ronan looks a little bit odd and acts a whole lot different than other kids, but I have enough teaching and coaching to do for my own child.
I haven’t always been an outgoing person. When I was younger I was somewhat shy. I would avoid raising my hand in class and would steer clear of a crowd if I saw one ahead of me. Staying quiet, I preferred to be in the background. As the parent to a non-verbal child with regressive autism, I no longer have that luxury. I cannot remain silent. I have to speak up. I have to speak for Ronan and also for myself.
When Ronan first lost his ability to talk, I looked to Autism Speaks as a resource. Founded in 2005, I no longer believe that they speak for me nor for Ronan.
My son wanders. He has seizures. He requires round-the-clock care. I do my best to find and support groups in the autism community that hold the same values and expectations that I do. It’s a shame that an organization as large, profitable, and recognizable as Autism Speaks made a statement that once again refused to acknowledge and accept what so many parents have come to discover - that vaccines did in some way contribute to their child’s autism. Their latest statement reminded me to be careful which groups and which people I pick to speak for me and for Ronan.
Since my son, who was affected by vaccines and who has autism, can’t speak for himself, I must advocate for him. I do that with the help of my husband and with professionals we hire to assist us. Typically, it is I who oversees and ensures that Ronan’s medical, educational, and therapeutic needs are being met on a daily basis. If something isn’t going well, I have to speak up. I have to address the issue. I have to communicate that there is a problem. Thankfully, the team of people we consult on a day-to-day basis for help and for treatment do whatever they can to assist us. I value our team’s input and let them know how much they are appreciated as we work toward common goals: to help Ronan, to teach him useful skills, to bring him to better healthy—because autism is medical, and to bring him opportunities so that Ronan can be as active and as happy as he can be.
When we’ve gained new people as Ronan moves out of one phase and into a new one, I’ve had to learn to navigate those new phases and new demands. During that time, I tend to ask a lot of questions. Some days I’d love to be quiet, but being quiet doesn’t help Ronan. So I find myself speaking up and searching for answers. In my search, so that I can better advocate for my son, I have to once again go outside of my comfort zone and look to others for help. I sometimes have to look beyond my local area for help.
It would be difficult, if not impossible, for someone to create a character that depicts all that autism encompasses. From the very high functioning, who are able to live day-to-day independently, to the lower functioning individuals, who will never be able to live on their own, there’s a reason why autism is called a spectrum disorder.
Affecting one’s language skills, social skills, and other developmental skills, the disorder has been identified in 1 in 68 children. Using data from children born in 2002, the current rate of 1 in 68 was announced in the spring of last year. Many believe that the autism rate is much higher than what the officials chose to present. Data used to calculate the current rate does not include my son nor other children. What about the many children who’ve fallen onto the spectrum since 2002? They exist. When will they be included in the national number? My guess is not for awhile. I don’t think the public is ready for that.
It’s no secret that the autism rate is rising, but I think the public’s been kept in the dark about it and about how challenging autism is.
I’d love for more people to understand that the autism my son lives is different than what is shown on air. I think it would help. It would help him—people would see him in a new light and want to help him. It would help us—people may not be so quick to judge. And it would help the public—they might then realize just how severe this disorder can be.
My son is lower functioning. The autism is severe. He is non-verbal. He suffers from seizures. He needs assistance to eat, to bathe, and to use the toilet. He’s in 7th grade and is still in diapers. Our friends and family understand how great his needs are, but I fear that much of the public has yet to catch up. Catching up is hard to do when the autism rate is downplayed on the news. They can’t catch up when autism is depicted on popular television shows and movies with mostly highly intelligent and verbal characters. The public cannot know the autism reality that my son and so many others like him live if that side of autism is not talked about out in the open.
Last week, my son received a phone call. Ronan is non-verbal and couldn’t answer the call himself, I spoke on his behalf as I have done for years now. I tried to speak on his behalf when the phone rang again. But I was not given the option.
“This is Care Line. We’d like to speak to the parent or guardian of Ronan Jameson. If you are the parent or guardian of Ronan Jameson, please press 1.”
I hung up after hearing the next prompt.
“You may be aware that flu season is just around the corner. We’re calling you today to share some life-saving information, but first, we need to know if Ronan Jameson has had his flu shot this year. If Ronan has had his flu shot, please press 1. If he has not had a flu shot, please press 2.”
I wanted more options. But was given only two.
I don’t usually hang up on people. I’ve never hung up on anyone from Care Line (not the real name) because they have been helpful in the past. They’re available to me 24 hours a day and 7 days a week. I receive immediate guidance from someone on their medical staff. They provide support and never judgement. One staff member in particular has been extremely helpful. She and I have spoken several times over the last few years. She knows Ronan’s extensive medical history to include the reactions he had from vaccines. She also knows my opinion about vaccines. But each year around this time, she’s asked to discuss the flu shot with her caseload. So each year around this time, we “discuss” it by me once again politely declining the shot before she has a chance to read whatever statement that Care Line has drafted her to read.
On a rather busy morning last week, the phone rang. As I reached for it, I cleared my throat and said, “Hello?”
“Good morning. May I please speak to Ronan Jameson?”
I hesitated and was able only able to utter, “Uh…”
I immediately felt uneasy and somewhat annoyed. Most everyone who calls the house knows that Ronan cannot speak. Who was this person was and why did she need to talk to my non-verbal son?
I politely asked, “Who’s calling, please?”
“This is Cindy. I’m calling from the diaper service company.”
“Oh.” I said. Deciding whether to put Ronan on the phone or not, I glanced to where he was. Sitting on the couch with iPad in hand, his favorite movie playing on the DVD player, and breakfast just served on the table behind him—a gluten-free feast fit for a king—I decided not to put Ronan on the phone. Had it been a telemarketer, I may have said, “Sure. And good luck!” before passing the phone to the boy who lost his speech several years ago.
Turning away from Ronan, I told Cindy, “Well, Ronan can’t talk. I’m his Mom…what is it you need?”
Cindy stammered. My response must have caught her off guard. She said, “Well, let me leave a note in the file that we should talk to you instead.”
I could hear her typing as she tried to regain her thoughts. She was calling about the next shipment date but had gotten so flustered. I took the call and her oversight it in stride but wondered if Cindy could tell that I was faking a smile while waiting for her to proceed with the call.
Other representatives have always asked for me directly, but I did not protest her adding that Ronan can’t talk to his file. Lack of typical speech is something worth noting. It may have been news to Cindy, but it’s something we have been addressing for quite some time. Sign language, flash cards, labeling everything in the house, narrating every action, emotion, and item Ronan sees, smells or touches, we flooded Ronan with words as soon as he went silent. Despite our efforts, though, Ronan hasn’t regained speech.
Vaccine injury happens. It does not discriminate. It can affect the young, the old, and the healthy. Sadly, it isn’t as rare as we’re lead to believe. If you haven’t had the misfortune of being injured by a vaccine, count yourself blessed. My son wasn’t so fortunate.
When I learned that my son was injured by his vaccine, I found very limited information on what to do next. In my quest to learn more, I discovered some important things. I’d like to share some of those ideas with you today.
1 – If you’re considering opting for vaccines, read about them. Become as fully informed about them as you can. If it’s for you, look at the adult vaccine schedule. If it’s for your child, you’ll want to check out the childhood schedule. Both can be found on the Center for Disease Control and Prevention website. Take time to know the dosage(s) recommended, the timing of the dosage(s), the ingredients of each vaccine, the side effects of each vaccine, and the injuries that the government recognizes.
Sometimes, the hardest thing for the parent of a vaccine injured child to listen to isn’t their own child’s response to pain; it’s what comes out of another person’s mouth that can be difficult to hear. Like this admittance that comes after advice from the parent of a vaccine injured child has been given:
“I went ahead and got his shots…”
Of the few that I’ve heard, that response is one of the hardest ones to hear. Personally, I think that one sounds like a cop out, too. “I went ahead and…” doesn’t eek confidence and has a smidgen of guilt added. When it’s said to the parent of a vaccine injured child after we’ve been sought out, and after facts have been laid out, after websites, and books and journals have been referenced, and after we’ve included the retelling (and subsequently, the reliving) of our own child’s vaccine injury, the response, “I went ahead and got his shots…” actually kind of hurts. Now, yes, advice certainly does not have to be taken, I understand that, but when the other parent who was so afraid and so worried and somewhat doubtful about vaccines came to me for information but ends up doing the exact opposite of what I suggested, yeah, that hurts.
I’d like to believe this one, but when I hear this, I’m the one who has doubts:
“Well, she got her shots and turned out just fine…”
I would love nothing more than to believe that statement. But I can’t when the child who received the shots ends up with signs of eczema, unexplained allergies, attention issues and asthma that didn’t exist before.
To me, “just fine” means there are no reactions whatsoever. That means no fever, no swelling, no joint pain, and none of any of other “mild” vaccine reactions that the CDC lists on the vaccine package insert. “Just fine” also means no resulting eczema, sensory issues, allergies, asthma, attention issues, sleep issues, changes in personality, juvenile arthritis or diabetes, and no need for accommodations to be made in school or home.
By Cathy Jameson
We've hit a snag in the clothing department. Ronan has plenty of clothes, but about a month ago, Ronan preferred not to wear them especially the ones that cover his nether region. During this de-robing phase, it wasn't just his clothes he was taking off—it was also his diaper that I’d find on the floor.
At first, I thought maybe we had some defective diapers. The Velcro tabs weren’t sticking as well as before. But then, the longer it went on, it seemed like a game for Ronan:
Saunter casually passed Mommy.
Watch Mommy's eyes widen.
Walk away as if being naked was a normal and acceptable every-day activity.
Then, watch Mommy run all over the place to find what’s been left behind.
The faster I’d leapt to my feet to find Ronan's clothes, I realized that Ronan's game wasn't over. I'd find his clothing and diaper, which was dry, but Ronan wasn’t done having his fun. He’d finish the game with a laugh after fighting like the dickens while I attempted to get him dressed again.
This happened every few days. Then it began to happen every day and several times a day. Then it happened on a day we had guests over. New guests. Who'd we never met before. Thankfully, the guests were aware of Ronan, the autism, and the need for diapers, but imagine my horror as in walks a half-naked Ronan to the dining room where we were sitting and chatting. To say that I was mortified is an understatement.
I went into the education field over twenty years ago. Conceivably, had I continued to teach, I might soon be eligible to retire. I don’t think about retirement like others in today’s workforce think about retirement. That’s because I left my field long before I ever expected I would.
Instead of soon retiring from what I’d hoped would be a life-long career, I found myself in a different role. It’s a more permanent one that comes with no salary, no benefits, and no 401(k). The role I have now is full-time caregiver for my child.
More and more parents today are finding themselves in similar roles. While some may be able to juggle part-time work or a full-time job while caring for a severely affected child with autism, I have not had that chance. Ronan is non-verbal. He has seizures, and he has low energy levels. His week is peppered with therapy and with a shortened and modified school day. He is home more than not, which means that I, too, am home with him. Being able to afford the round-the-clock care that Ronan would require in order for me to step out of the home and work again is nearly impossible.
I do work, as does every stay-at-home parent, but I don’t know if I could actually put a dollar sign on the labor that is required to care for Ronan. I have read that over a child’s lifetime, it costs parents $245,000 to raise them. If that child has autism, costs can exceed $1.4 million over their first 18 years. Even if I had made my way back to the teaching field, I’d be hard pressed to find a job that would cover those costs.
Today, instead of writing lesson plans, grading papers, and developing curriculum, I’m home. At home, I’m overseeing Ronan’s therapy, medical appointments, and his wellness. I certainly couldn’t do what I have had to do for my son and for my family without the help of some of the people who’ve graced our lives. We have quite a team of people, specialists, providers, and supporters to assist me with Ronan’s needs for which I am grateful.
I got to hold a newborn. I held him again a few weeks later. It was an exquisite feeling to hold this child.
The new life.
His perfect little body.
That newborn baby smell.
The endless opportunities he will have.
I’d attended his baby shower several months earlier. I bought his mom, a young twentysomething, more than I should have but that’s because I was thrilled to support her. With autoimmune disease in her family history, as well as having had to care for a family member with autism, she was rightfully nervous. I felt it necessary to offer as much support as I could as she prepared to bring a child into the world.
Her own history, plus knowing our family well and the medical path that I had chosen for my older children, prompted her to ask questions and to search for answers. Long before she found herself preparing for her son’s birth, in a quest for knowledge, she’d decided what she would do when it was time to raise a family. Not only did she decide what she would do, recalling my experience with my children, she also decided what not to do. Instead of following recommended schedules and standard American practices, she would be as healthy, organic, and natural as she could. She would be as free from everything “standard” as she could be, which also meant no vaccines.
I wonder what Ronan’s voice would sound like if he could talk.
Ronan’s youngest sister randomly uttered that out of the blue last week. Hearing that said out loud stopped me in my tracks. It’s something that I think about regularly. The difference between her saying it and my thinking it is that I know what Ronan’s voice sounds like. Having only known Ronan to be non-verbal, my 7-year old doesn’t remember the husky voice, or the twinkle in Ronan’s eyes, or the way he’d light up a room when he entered it. She only knows Ronan to be mostly quiet, somewhat detached, and that he prefers to be off on his own.
It is very, very rare that we hear any words from Ronan these days, including hearing the words he could say years ago. Spoken words are nonexistent. Ronan can vocalize and does so frequently, so we encourage Ronan to continue to vocalize those sounds. We do that always hoping that they will turn to verbalizations. But he can’t talk like his siblings do. He can’t verbalize the thoughts, opinions, fears, and feelings he has. He can’t speak up for himself like other kids can. Ronan can communicate with a speech output device, but that device, as high tech as it is, is not Ronan’s true voice; it’s a computer generated string of prompted words that lack affect and emotion.
That husky voice, the twinkle in his eyes, that way he could captivate an audience with just his presence. I miss it, and my youngest daughter yearns to experience it. We pray that one day speech will return not just for her benefit, but for Ronan’s. Ronan tries hard to communicate the words he knows when he signs, when he types, and when he uses that voice output device. Those attempts sometimes lead to success, but they can also result in dismal failure.
A day on the beach
Fulfilling one man’s vision
For kids with autism
To spend time surfing
Made for one perfect day indeed.
For some, autism is part of life 24 hours a day, 7 days a week, 365 days a year. It takes no breaks. And it doesn’t go on vacation. For Ronan and for families like ours who have to juggle sensory issues, major communication delays, GI problems, and seizures day in and day out, sometimes we need a break from life. Surfer’s Healing gave us the chance to relax, to take a break, and to live, if only for a moment, like some other families do.
Every child is unique, and every child deserves a moment in the sun. –Izzy Paskowitz
Even though it is just for one day, when I found out that Surfer’s Healing would be on the east coast again this summer, I made sure to register Ronan for one of the camps. The day is like no other, and the people who make that day happen understand just why kids like mine need it.
It was through their experience of taking their son with autism surfing that Israel “Izzy” Paskowitz and his wife, Danielle, founded Surfer’s Healing. Since it began in 1996, Surfer’s Healing has given thousands of children with autism “a chance to encounter the waves, to challenge themselves, to try something new.”
But they do so much more than that.
From their website:
We take kids with autism surfing. We paddle out together on tandem boards to watch the waves that come our way. That’s what we do; that’s what we love.
On the surface, our contribution seems simple: each year, our volunteer-staffed camps give over 4,500 children with autism and their families a fun, engaging day at the beach.
But go deeper, and you’ll see that a quiet revolution is taking place. Through the simple act of riding waves together, we’re defying the status quo.
When we help kids get up on a board, we’re challenging preconceived notions of capability. When we encourage participants to dive in, we’re empowering them to engage with the world. And when we ride the waves together, we’re affirming that every person is a gift.
We shared this post about back-to-school shots in September of 2014. Before more schools begin another academic year, we thought we'd update the post and share it again.
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.
While driving to the grocery store Friday morning, I tuned into a national talk radio show. I was just about to turn the station to find some music to listen to when I heard the announcer say “…A We the People petition…over 100,000 signatures…” Instead of turning the dial, I turned the volume up. I thought to myself, No way! Are they talking about the forced vaccination petition we all signed? The one we finally got a reply on this week? Imagine that. It made it to the national news!
I was wrong. The petition featured in the news story was not about the forced vaccinations petition that I signed several months ago. It was a petition asking that justice be served for Cecil the Lion. Well over 100,000 signatures were obtained within days of the petition being posted.
Well over 100,000.
While I am all for protecting life, including the lives of animals in the wild, after hearing the news story, I was baffled. More American citizens quickly jumped at the chance to support the legacy of a lion than stood up and signed a petition against forced vaccinations.
“We petition the Obama Administration to:
PROHIBIT ANY LAWS MANDATING THE FORCE AND REQUIREMENT OF VACCINATIONS OF ANY KIND.
Mom’s helping Ronan this evening. He’s had a few seizures. So, while she’s staying close by his side, I thought I’d help her get a Sunday post ready.
I saw Trace Amounts when Eric Gladen was in Washington, D.C. Half-way through the movie, I leaned over to my Mom and said, “I’ve got to hug him when this is done.”
Mom asked me, “Why?”
I told her, “Because he’s been through so much.”
I got to tell Eric that when the movie was over. I told him I learned much more about mercury from his documentary. I already knew a little bit because of my brother’s vaccine injury and because we learned about mercury in school.
In school, the textbooks said that mercury was beneficial. I don’t believe that it is. Mercury can affect the brain and someone’s health. Eric explains that. He also talks about the government, the pharmaceutical companies, and how the American people need to be more aware of how mercury is allowed to be used even though it can cause problems.
As we make plans for a family getaway this summer, I realized that I never shared what we did on our family vacation from last year. After months of planning, we took the kids with a two-week vacation to the Pacific Northwest.
Since I love surprises, we didn’t tell the kids where we were going until we were on the plane. They guessed and guessed and guessed all sorts of fun places we might go. Little Buddy guessed correctly that we were going to Washington state. It wasn’t an easy trip to plan, but it was one of the neatest ones we have been able to go on as a family. From one coast to the other, with all seven of us traveling, our trip was quite the adventure.
TGIF: Toes Go In First…even if the water was only 55 degrees!
Plan, Plan, and Then Plan Some More
On any given day when Ronan and I leave the house, I plan ahead. I think about how long we’ll be out of the house and pack what I think we may need. That includes diapers, wipes, snacks, and a change of clothes, seizure meds, and emergency seizure meds. It isn’t much to carry around, but those essentials must come with us.
I knew that we’d need to bring a lot more than those few items on a cross-country trip. Planning for the trip and for the length of time we’d be gone took months. I had to think about so many things.
The travel aspect – Ronan hasn’t been on an airplane since 2007. A million questions went through my mind as I thought about our trip. Would he board the flight willingly? Would he stay calm on the flight? Would the flight crew understand autism? What if we run into delays – what can we do/bring to help Ronan handle that? What if we had a medical emergency en route? How would we manage that? Not being able to do a practice run at an airport in our area, I knew that we’d be winging it and that we’d have to plan for every possible scenario and hope for the best.
Transporting the comforts of home – Besides clothes and diapering items, we had to make sure we had enough of Ronan’s medications to last the two weeks. I also made sure that we had enough for a few extra days in case we had any delays on our trip home.
Other comforts of home that I needed to have on hand were Ronan’s safe foods. I mailed a package of some of those items to the family we were staying with about two weeks before we traveled. That lightened some of the load we’d be carrying in our suitcases and gave us a day’s worth of non-perishable must haves once we arrived. Since most of us in the family are gluten-free, I had quite the stash of gf goodies for the plane trip west!
Breakthroughs. We ache for them. We pray for them. When we witness them, we leap for joy.
Breakthroughs come when we least expect them, but we welcome them each and every time they happen. They can lead to reaching a milestone or securing a skill that will lead to more independence. The thought of more independence floods me with feelings of peace and of hope. But as quickly as one skill is reached or as soon as one behavior has evened out, we see an old skill wane and an old behavior re-emerge. Some people have likened that to a seesaw: one skill goes up, and the consistency of another comes down.
That’s exactly what happened last week. Ronan consistently identified and said /m/ every time we (and he) pointed to a letter m. M for Mulberry Street. M in the middle of the word Pompeii, several Ms found and said in a storybook about Pocahontas. Each time he was prompted, and even when he wasn’t, you’d have thought we won the lottery with how we celebrated hearing Ronan say the M sound.
Mid-celebrating, though, our cheers were silenced. While catching up on making appropriate sounds, Ronan had been eyeing the door. I’d noticed that he’d been eyeing the door a little bit more than usual. Maybe he wanted to try out some other skills. Maybe his confidence was up. Maybe he thought he’d check out what was going on outside for a bit. And why not? The grass is always greener…
The door Ronan was eyeing leads to the garage, to the driveway, to our street, to our little spot in the neighborhood, and to the rest of the world. With each pass of the door, and now, with each attempt to open the door, Ronan must have thought this rest of the world would soon be his. Ronan’s not ready for the world though. So, after the third time catching Ronan trying to open the door by himself, I reminded Ronan’s siblings to remember to lock it each time they came back inside from playing.
Warnings worked to keep the door locked. But Ronan was working just as hard as the kids were to figure out how to get the door opened again. The day that Ronan was successful in opening the door, and when I discovered that he’d walked through it, was the day that my world shattered.
“So, California? What do you think about what just happened there?” a friend asked me midweek last week.
“California? With SB277? Oh, we’re screwed,” I replied matter-of-factly.
Not expecting that response, my friend’s eyes widened. I continued, “If you think that what happened in California doesn’t affect you, oh, boy. I hate to be the one to tell you that your freedom just got trampled on.”
I waited for her reply.
“Now I know your stance on vaccines, Cathy, but I have to say that all the unvaccinated kids they’ve been letting into school are a danger…” she started.
Now I was the one who was stunned.
She continued, “…and that law would protect my child. Yes, he’s vaccinated, but he’s sick all the time. Those unvaccinated kids bring disease and…”
“Wait. Your son is vaccinated. But he’s sick all the time?” I paused then added, “Maybe it’s not the other kids getting him sick. Have you thought that maybe it’s the vaccines making him sick?”
Not giving her too much time to let that sink in, I said, “You know that vaccines come with risks and that they don’t guarantee immunity, right? You know that they also may add a burden to his immune system. Instead of boost it, it’s having to work harder. Maybe his immune system isn’t working so well because of the vaccines.”
My friend looked at me and then at Ronan and said, “But the immunocompromised kids need the other kids to be vaccinated to prot—…”
“Ronan’s immunocompromised because of the vaccines,” I stated. “That argument doesn’t work. And I would never tell another parent to vaccinate their child to protect my child.”
Before she could say anything, I said, “By agreeing that this law is a good thing for your child because you think it will somehow protect your child, you forget that for other children, like mine, it will only add risk. I’ve studied those risks. I understand those risks now but only after watching my child’s health decline. I can’t ignore those risks, and I will not let what happened to Ronan happen to any of my other children. To say that you’re hoping that your kid will stop being sick when other kids are vaccinated and to completely ignore those risks, well, you can’t ask me to set my child on fire hoping that it will protect your child.”
“But if vaccines help the greater good…” she began. I couldn’t let her finish.
The month of June can be a challenge. A strict school routine ends. A new routine begins. Overall, my family enjoys this month. We celebrate two birthdays and an anniversary. This year though, as June approached, I didn’t feel like celebrating. I felt a little bit sad instead.
Towards the end of May, friends had started posting stories and pictures of their children’s end-of-the-year school events on Facebook. I had hoped to go to my children’s school events, but Ronan was struggling with transitions. Going to therapy was difficult. Leaving therapy was worse. Ronan’s meltdowns and frustration levels increased while my motivation decreased. Knowing that Ronan wouldn’t be able to handle the extra noise and excitement we’d find in his siblings’ classrooms, he and I stated home. Staying home wasn’t my first choice, but it was the right choice.
On the days we stayed home, I’d steal glimpses of my Facebook feed. I saw my friends’ children’s celebrations. They were filled with happiness and gratitude and included milestones and memories. Friends’ children, some whom are typical as well as some who had special needs, were winning awards and being promoted. Some were graduating, too. Those graduation ceremonies hit me hard. Ronan just started middle school so we’re a few years away from graduation. But I panicked. 8th grade will be here before I know it. So will 8th grade graduation. Then high school. Then high school graduation. Then…
Last week, California’s SB277 passed through another hearing with a 12 – 6 vote. . The law would attach a prerequisite mandating vaccinations in order to access education. This bill goes next to the full Assembly for a vote. Should it pass that vote, it will then head to Gov. Brown for his signature into law. As California goes, some believe, so goes the nation.
As this bill gains more traction, some are preparing to create a Plan B. As a parent of a vaccine-injured child, I strongly believe “There Is No Plan B.”
Stick to Plan A: The underlying foundation of who we are as parents is built on our love and personal responsibility for our children. Our parental rights have not been granted by the State, nor can these rights be denied by the State.
We have parental rights to determine the health care of our children.
We have parental rights to receive all pertinent information beforehand concerning risks of any treatment, procedure, or course of action recommended for our children.
We have parental rights to disclose individual, medical and family history of our children.
We have parental rights to grant or withhold consent based on all information.
We understand that the decisions we make are ours to make, for or against, because where there is risk, there must be choice. We respect each parents’ decisions regarding their children.
We have parental rights to reject anything that smacks of one-size-fits-all, herd mentality, community immunity, where our children are sacrificed for the “greater good.”
Our children have the right to a free appropriate public education as guaranteed under federal law. This right must not be jeopardized by forced prerequisites of questionable medical procedures, especially as these can potentially harm our children.
The Science has spoken.
Until it changes its mind.
The following headlines and images remind us that sometimes Science has some catching up to do. Sometimes Science needs an update. And sometimes Science needs to rewrite a textbook or two.
Rrewrites happen when Science flip flops.
Image source: Google images
Butter ISN'T bad for you after all: Major study says 80s advice on dairy fats was flawed
Science needs an update because sometimes Science doesn’t have all the answers it thinks it does.
Image source: Google images
Red wine is good for you!
Wait. No, it’s not.
Image source: NYTimes
Sometimes, Science thinks it know everything. During the 1930s, Science must have thought it knew everything about cigarette smoking. Science was so confident that it even encouraged doctors to promote cigarette smoking.
But decades later, the message about smoking cigarettes was a little bit different. The Science, and now doctors, said that cigarette smoking was dangerous to your health.
Major accidents, traumatic events, and other unexpected life-changing incidents can bring people together. Depending on the severity of an incident, like the September 11th attacks, an entire county can quickly pull themselves together. While drawing on each other’s strengths, people can get through bad news, drastic events, and tough circumstances. Incidents that happen on a grand scale bring lots of people together. So can other kinds of events.
A few weeks ago, I learned that a former co-worker’s wife was in rehab. The rehab wasn’t to overcome an addiction. It was set up so the wife could regain skills she lost after suffering traumatic injuries stemming from a terrible car crash. That crash, which happened about 8 weeks ago, left the woman paralyzed and on a ventilator. Life as she knew it was over.
Losing the ability to move her arms, legs, and unable to breathe on her own, things looked very, very grim. I've been peeking in on a Facebook page that's been set up to keep friends and their community aware of what happened and to rally support for the family. The intense therapy this woman needs is crucial, but so is the ongoing support she and her husband will need.
With a support network in place, this couple has the chance to begin to pick up where life as they knew it changed forever. In fact, in the past 8 weeks, positive changes have taken place.
With proper treatment, with a hell of a lot of determination, and with assistance from family, friends, and complete strangers, things have picked up. Things are looking more and more hopeful as each week goes by.
She can breathe on her own.
She can move her arm.
Vaccines: At Some Point You Have to Trust Somebody
“I’ve worked besides doctors… and there’s nobody I’ve ever worked with who questions themselves as much as doctors do, who question their own conclusions, and question their own method of analysis to make sure that they’re as certain as they possibly can be in the circumstance.”
Doctors question themselves because it’s part of their job. Parents question themselves because it’s their children who would suffer dire consequences if they do not. Reread that quote. Remove the word doctor. Replace it the word parents, and we want the same thing.
That quote came from Peter Michaud, JD, RN, a lobbyist for the Maine Medical Association. I heard it in a video which Ginger Taylor mentioned in a piece she wrote last week. At one point during the testimony, a Maine Representative reminds Michaud that the bill in question is calling for more vaccine education. She asks, “This bill is calling for more education…do you think that this bill makes some sense? Brought forward by consumers that have real concerns over figuring out whether there’s some correlation to what happened to their child with the vaccine or not?”
Michaud replied, "We all want answers. We all want answers to those questions that puzzle us, especially those questions that trouble us."
You’re doing it wrong.
Getting vaccines used to be a private decision made in the doctor’s office. Once prescribed based on a medical need, vaccines have become more of a commodity than a remedy. And those who are injected with vaccines have become pawns in shady governmental transactions.
I’ve been keeping tabs on the many vaccine bills that popped up across the US this year. Riding the coattails of the media’s overly exaggerated Disney measles outbreak, the timing of these bills feels more like an orchestrated pro-vaccine attack than a sincere response to help prevent the risk of disease.
The measles outbreak, which saw only 169 cases across the entire US, caused a kneejerk reaction. Over 30 states have some sort of vaccine legislation on the table.
Illinois’ SB986, if passed, would require employees in child care facilities with children age 6 and under to be vaccinated with MMR and Tdap.
New Jersey’s S1147, if passed, would restrict religious exemptions.
Vermont’s H98, if passed, would remove philosophical exemption.
Those are just a few examples of the vaccine bills that have been drafted, amended, and recently voted on. Claiming a national health crisis and low vaccination rates as reason to introduce vaccine legislation, those bills have moved rather quickly despite not one Disney measles death resulting and despite seemingly high national vaccination rates for many of the vaccines found on today’s schedule.
Mommy, do you know what I want to be when I grow up?
I want to be a mommy!
My heart swelled. I asked, “How many kids do you think you’ll have?”
Two. Will you help me with them, mama?
Every single day. I can’t wait to be your little mommy helper.
That was a conversation my six-year old daughter and I had a few months ago. Two weeks ago, we revisited that conversation:
Mommy, do you remember what I want to be when I grow up?
You want to be a Mommy!
I do, but I want to be a mommy who comes to help at the school, like Margaret’s mommy does. That's the kind of mommy I want to be.
Margaret’s mom is really nice. She’s always helping at the school, in the classroom, in the lunchroom, and on the playground. That's the kind of mom I wanted to be. I wanted to be that mom even before I started having babies. But the sicker Ronan got, the less time I got to be that kind of mom. The less time I got to spend with my typical children, too. My typical children realize this and know that I can’t always be there for them. They also know that I sometimes have to rely on others for help.
Update on California’s SB277 – despite strong opposition from parents and providers from across the state, SB277 passed through the Judiciary Committee last week with a 5-1 vote. Senator Joel Anderson was the only no vote. SB277 will go next to the Appropriations Committee.
The archived video of the latest hearing can be found at this link:
A press conference with Mary Holland, J.D. can be found here:
One of the most important questions that was asked during the SB277 hearing was asked by the Senate Judiciary Committee Chair, Senator Hannah-Beth Jackson. She asked:
What does it mean to be vaccine injured?
Senator Jackson asked that question after observing that, “…there are parents here who are saying that their child is vaccine injured. I’m trying to understand what that term can encompass…”
In trying to understand that term, Senator Jackson asked Senator Pan, a physician and co-author of SB277, if he could respond to the question. He said he could. Senator Pan replied:
“So, the term vaccine injury, is a term used by the opposition. It’s not a technical term that we use in the medical field.”
Senator Pan went further and stated, “...there are people who’ve stated that their children are vaccine injured from conditions that have been proven, um disproven, to be associated with vaccinations such as, unfortunately, autism.”
He added that, “…numerous studies have demonstrated there is no link between the two as well as the fact that the studies that originally that made the claim have been discredited.”
Assuming he is citing Dr. Wakefield et al.’s (1998) paper, Senator Pan must not have realized that similar results of the findings of that paper have been replicated several times across the world. But Pan continued and said, “… [vaccine injury] is not a term that is used within certainly the medical public health field. It is used by the opposition. So it’s not always clear what that really means.”
Senator Pan concluded his answer by stating that, “…vaccines, like anything else, there’s always a small risk that’s associated. And in fact, the risk is much, much smaller than the disease that we’re trying to prevent. And that’s why vaccines are declared to be safe and efficacious.”
Dr. Pan believes that vaccines are safe and efficacious. He believes that even though the US Supreme Court has ruled that vaccines are unavoidably unsafe. While some pro-vaccine proponents like Dr. Pan choose to believe that vaccines are only safe and only efficacious, vaccines do cause vaccine injury.
Autism is a spectrum disorder that impacts and/or impairs ones social, communication, and cognitive function. Since it was first described to today, the rate of autism has significantly increased:
1 in 10,000
1 in 5,000
1 in 500
1 in 250
1 in 166
1 in 150
1 in 110
1 in 88
1 in 68 children and 1 in 42 boys
The month of April, also known as Autism Awareness month, will soon end. Awareness is a nice thought. But awareness is an illusion. It gives an impression that something is being done. If something was being done about the autism rate, namely to reduce it, the current rate would not be as high as it is today.
There is nothing wrong giving a nod to autism and acknowledging that it exists. That’s one thing that awareness does. Awareness also makes some people feel good. Alone, awareness can only do so much. It should be coupled with something else – with action. Action is the process of doing something. Autism action is the process of doing something for someone with autism. Most families I know would prefer autism action over just autism awareness.
By Cathy Jameson
My husband and I haven’t had a chance to get out together in a few months. Juggling five kids and Ronan’s medical issues prevents that. But when we heard that Eric Gladen’s Trace Amounts was coming to the east coast, we made plans well ahead of time to make sure we were there.
I’m so glad we went. It was more than just a date night for me and my husband. And it was much more than just another movie for us to see.
Others who came out to support Eric Gladen at the US Capitol Visitor Center on April 15th were Robert F. Kenney, Jr., Rep. Bill Posey (R-FL), Jim Moody, Dr. Richard Fischer, Dr. Brian Hooker, Dan Olmsted, Mark Blaxill, Becky Estepp, Jennifer Larson, Lyn Redwood, Tony Lyons, Brook Potthaus, Josie Nelson, and a host of others, to include quite a few parents. We were there to support not only the movie but to discuss an important issue: mercury.
Mercury has become is a controversial subject. It shouldn’t be because it’s a neurotoxin. But mercury and its harmful effects are downplayed by those who manufacture it, by those who choose to add it to their products, and by those who regulate its use.
Despite public opinion and despite what’s being reported in mainstream media, thimerosal, a form of mercury, is still found in some vaccines today. Eric suffered devastating effects from thimerosal in a vaccine he received in 2004. He shares what happened to him in his movie, Trace Amounts.
Trace Amounts “is the true story of Eric Gladen’s painful journey through mercury poisoning that he believes resulted from a thimerosal-loaded tetanus shot. His discoveries led him on a quest for the scientific truth about the role of mercury poisoning in the Autism epidemic.”
By Cathy Jameson
An Easter Blessing.
Forty days ago I gave up something in preparation for my Lenten journey. Slipping up a couple of times, but before I could be totally sidetracked, I realized how quickly I could ignore this sacrifice. Fortunately, with reflection and prayer, I was able to redirect my thoughts and stick to promises made. Replaced with peace of mind, self-control and a chance to make amends, I continued through these last few weeks with discipline. In doing so, I also reduced a bad habit that I had allowed myself to engage in.
Today is an important day for me. Not only is it Easter, one of the holiest days of my Church’s year, it’s also a milestone of making a commitment to better myself. I got the chance to start something over, and to do it better this time around. I pray that I continue to find strength to fulfill the promises I made a few weeks ago and that they have a positive effect on those closest to me.
Easter. A time of renewal. A time for joy. A season of new life. A season for growth. May today’s Easter blessings bring you new life also. May it fill you with courage and perseverance needed for this journey. May you too find strength to keep your promises alive. And with every possibility for hope and healing, may we all find happiness wherever we turn.
Cathy Jameson is a Contributing Editor for Age of Autism.
Happy to run Cathy Jameson's post from last April. We know that we spend 365 days a year helping our loved ones with autism. But, since it's April, here are 30 ways for the 30 days. Share your own ideas in our comments. Here's a translation that a reader created too - Abril: 30 Días De Autismo En Acción Para Ayudar A Familia y Amigos
By Cathy Jameson
awareness: (noun) knowledge or perception of a situation or fact
action: (verb) the fact or process of doing something, typically to achieve an aim; a thing done; an act.
April is labeled Autism Awareness Month. When it comes to autism, with 1 in 68 children diagnosed by a potentially life-long disorder that affects one’s independence, communication and socialization skills that can also impact the neurological, digestive and sensory systems, awareness only does so much to help those affected. For some time now, activists have been asking for autism action instead.
Awareness is merely knowing. It lets someone watch the epidemic grow without having to do anything about it. Action gives someone options. It gives people the chance to get up and do something about autism. Autism happens every day of every month of every year. Awareness or action. Which will you choose?
If you choose action, consider picking one of the following things that can be done now, today, this month to assist someone affected by autism:
1 visit and get to know a family in your community that’s affected by autism
2 offer respite for a family
3 the siblings needs some time and space to themselves too--take the typical siblings out for the day
4 find out what autism books the parents are reading, and read the book with them
5 order the book, and donate it to the local library
6 autism parents read a lot--give the parents a book store gift card so they can continue to educate themselves on their child’s disorder
7 find out what equipment the child needs (communication device, therapy swing, chewies, etc) and help purchase it
Let me embrace thee, sour adversity, for wise men say it is the wisest course.
It’s that time of year. We’ve flipped a calendar page to a new month: the month of April. The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode. From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me. While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me.
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.