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.
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.