Last week, we heard that there was a National Siblings Day. National Sibling day is a day to celebrate your brothers and sisters. Some people did that by sharing their pictures on their facebook and Instagram pages. For today’s Sunday post, we wanted to share a little bit about what it means to be a brother and a sister to Ronan.
The autism he has and that we experience makes Ronan not be able to speak. It makes him unable to do things that other people can do. It also makes it harder for him to walk. He has lots of medical issues which means things are tough for our brother.
One thing that makes me, Ronan’s youngest sister, very sad is when he is unable to speak and he gets upset and he starts banging his knees to tell me he is really sad. That happens when I can’t understand him. I try to help him and he knows I’m trying. But my favorite thing to do with him is to play with him and make him laugh. I made him laugh two nights by saying his favorite word, which is colors. I start spelling it one letter at a time: c-o-l-o-r…and he has to say the last letter. He actually said S! So I did it again. C-o-l-o-r…and he said S again! It made both of us laugh.
When I think about what autism is like for Ronan, I, Ronan’s younger sister, know that it means he’s not being able to do as many activities as we can do. It means he has trouble getting us to know what he wants because he has no speech and because of his disability. His brain works a little slower sometimes, too. That doesn’t stop him trying to tell us stuff. Sign language, typing out what he wants on his voice output device, and encouraging him to say letters individually are some things I do with him to instruct him. He’s happy when I do that kind of stuff with him.
When he does try to speak to me it’s harder to have meaning behind it (he makes more vocal sounds than verbal words). I’m Ronan’s younger brother and like that he’s trying, but it’s hard for other people to understand it and him. He gets frustrated a lot. Every night we pray for Ronan. I ask God to help Ronan to be able to expand his vocabulary and be able to use it by speaking to us. We know that Ronan knows a lot of things, but he’s stuck trying to get those thoughts out. I want to know what he’s thinking. I also want him to play with the rest of us. He’s a really fun kid when he wants to play with me.
I’d rather have an autistic child than a dead one!
I see that response every few months, and I’m surprised each time I see it. I’ve never made that statement myself, but it will sometimes take my breath away while I’m reading or replying to online conversations about autism and vaccines. Usually written by someone who has declared themselves pro-vaccine, I always find it an odd thing to say. I’ve found that the people who say it tend to be quick to dismiss opinions other than their own. No matter the topic, dismissing another’s opinion limits the opportunity for a productive back-and-forth dialogue. Differences and odd statements aside, online convos about vaccines and autism are already known to be quite lively.
Prior to stating that they’d rather autism versus death, as I recently heard someone say, the person has also just adamantly asserted that vaccines don’t cause autism. They can’t. Not wanting for their child to succumb to the measles, or whatever illness the media is perpetuating, they’ve insisted on the MMR vaccine for their child. Led to believe that their child will die from the measles, they really, really want that vaccine, especially because that one doesn’t cause autism. I won’t argue with their right to choose to vaccinate, but I can’t help but shake my head when their comeback, even though they didn’t need one, is “I’d rather have an autistic child than a dead one!” Wait. What? They just said vaccines can’t cause autism, so why on earth would they say that they’d would rather an autistic child than a dead one unless they actually do think that the MMR vaccine can cause autism? Besides being a tad rude, their comment doesn’t make sense.
I know that when that emotionally charged statement is made in a conversation, the person doesn’t want to hear anything else from me. As the mom of a child with regressive non-verbal autism, whose autism is a result of a vaccine injury, I’ve exhausted them. I want to tell that other person that I’d rather they long for a typically-developing healthy child and hope that they would never have to think about making such a tough choice of a dead kid or one with autism. When they add that to the conversation, it’s almost like they are saying they feel like they have to pick the lesser of two evils. No one should have to do that.
I’ve learned that if I want to keep the convo going, though, I can’t just blurt things out like they end up doing with their “autistic over a dead child!” retort. When I hear that said or see that left in a comment online, it’s an immediate conversation stopper. Once it’s been uttered, I know I’ll soon quietly, but confidently, walk away from the other person. I’ll generally have said all that I needed and wanted to say at that point. I know that even if they wholeheartedly disagree with me, which is their right, I’ve at least had the chance to plant a seed. They can’t believe absolutely in the science of vaccinations as they do and also acknowledge the anecdotal evidence that I’ve provided. Hearing from me, a parent who walked away from the vaccine industry, sometimes is too much for them to handle. For them to admit that vaccines could be anything but safe and effective would go against everything they’ve been told to accept as true. Since we, at one time, were in agreement, I have made sure to tell that other person that I, too, believed only positive notions about vaccines. No way could they have done what they actually did to my kid, right? But they did. My son was a thriving baby, met his milestones, and was very playful. But then, an unexpected vaccine injury happened. Lost, confused, and in denial, I had no idea what to do.
Aaaaaaaaaaaaaaaand it's 2019 2017. "Y'all ready for this?" I want to do a reverse Punxatawny Phil and crawl INTO my den for the month. Kim
Aaaaand it's 2019 2015.
Managing Editor's Note: We ran this post from Cathy Jameson 6 Aprils ago last April - 2013. I wish it were out of date. 2190 365 days later and it still works...
By Cathy Jameson
Let me embrace thee, sour adversity, for wise men say it is the wisest course. --Shakespeare
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.
April used to be my favorite month. It ushers in springtime weather and the awakening of new life. It also happens to be my birthday month. Now, when I think about April and how blue it makes me feel, it’s the worst time of year. Long before the month starts, I’m done with April and the autism ‘awareness’ and ‘celebration’ it brings.
Not only has autism awareness been pushed so much that I’m blue in the face because of it, I recently saw a new campaigns are asking us to embrace it. Embrace autism. Really? I’ll embrace a lot of things, but I will never embrace autism. Before anyone jumps down my back saying I don’t love the person behind the autism label, rest assured I do love that person. I love Ronan to the moon and back (well, farther than that really because many of you know I will do everything I can for him). HE is who I love. HE is my inspiration. HE is the reason I work so hard. But, to ask me to embrace WHAT grips him from the inside out, what limits his abilities and his potential, and what he struggles with almost every minute of every day? Never.
Autism, celebrate it. Autism, advertise it. Autism, wear it. Autism, it’s not so bad. Embrace it.
From the Redwood Forest to the Gulf Stream waters,
This land was made for you and me…
One of the first songs I recall from my childhood, besides classic nursery rhyme songs, is Woody Guthrie’s This Land is Your Land. I remember singing that song while living on the west coast in the mid70s around the time I started kindergarten.
I would sing This Land is Your Land on long road trips, too. Cris-crossing the country, as Guthrie did before he recorded that song, I loved looking out the window while we traveled down the highway. Sitting in the back seat of my family’s Oldsmobile, I watched for trains, I looked for waterfalls, and I took in the sheer awesomeness of the Redwood Forest that Guthrie references. Other places we’d explore, like the Grand Canyon, the Painted Desert, and the Texas hill country, were just as jaw dropping. Proud to be an American, I couldn’t wait for the next road trip to see more of my great country. I didn’t feel proud after watching the news this week. More shocked and appalled than I’ve ever felt before, I couldn’t believe what was happening right here in the United States.
From California to New York, vaccine news this week was more than just bizarre; it was downright ludicrous. From yet another vaccine bill that will remove more rights to restricting healthy citizens’ access to public places, officials’ tactics are proof that our government is not interested in the people. What is more disappointing is that they’re doing these upsetting things in the name of better health.
On the west coast in California, vaccine exemptions are again under fire. They shouldn’t be because on more than one occasion before SB277 became a law, Senator Richard Pan (CA-D) assured the public and his fellow politicians that Californians would not lose medical exemptions. With the introduction of SB276, he is going back on his word. A complete overreach, Pan’s bill would not benefit the people of the state of California. Besides stripping them of their rights, it would also undermine a physician’s professional opinion and responsibilities. Doctors are the ones who write medical exemptions in California now, but Pan is pushing for the Department of Public Health to take over that role. His bill would limit qualifying conditions, too, and will, in essence, give more control to the government, not to the patient or to the physician who personally oversees their medical care.
NOTE: Cathy often ends her post with music. When I read this post in preparation for publication, I immediately thought about this powerful scene from Sex in the City - where Samantha (the bad girl of the show) gets REAL during a breast cancer benefit. She speaks out, breaks the taboo of the reality of cancer. It's at the end of this post. There's a moment of salty language. This is how I envision Cathy, and so many other women, including myself, for DARING to confront the myths and bullying that surround vaccine choice. STRIP OFF YOUR WIG and TELL THE TRUTH. The anti-vaxxer? SHE'S ME. SHE'S YOU. XOX Kim
A friend sent me a message a few nights ago asking me to check out an online conversation that was on one of her social media pages. I told her sure, I’d check it out. I was just about to serve dinner, though, so I quickly opened the conversation knowing I’d have to come back to it when I had more time. Scrolling to a woman’s comment that my friend wanted me to look at, I leaned back in my chair. Ahh, an online conversation about vaccines. Do I really want to jump in? I’ve shied away from joining in on friends’ social media posts beyond sharing a “like” or “favoriting” something they’ve posted. I’m in full support of their efforts when links about liability-vaccines, autism, parental rights, and protecting existing freedoms begin thoughtful conversations, but I don’t know their friends or their friends’ beliefs. I’ve walked into too many hateful one-sided online conversations with complete strangers. Whatever I try to share with them – even if it’s a link straight from the CDC saying that all vaccines come with risk, is somehow turned against me. At quick glance, I could see that the conversation my friend invited me to join could be heading in that same direction.
Subjected to more hate than reason, I haven’t wanted to chime in on conversations on other people’s pages as much as I used to. But this friend reached out to me specifically, and I fully trusted her to help back me up should things turn ugly. So, after I read the other person’s comment, especially when they asked Why someone would walk completely away from vaccines? Why when we know they work! I decided to say something. I couldn’t answer her right away. Dinner was ready. But I told myself that if the tone of the thread didn’t change before I came back to the computer, I would leave a ‘one and done’ reply. I’d get what I needed to say in one sitting.
I wish I’d thought to save the original post and the questions that person was asking, but I didn’t think to. Besides wondering what turns someone into an “anti-vaxxer”, my friend’s friend wondered if some sort of testing could be done since she’d [paraphrased] heard the media say something about autism and vaccines and something about underlying conditions. Prior to that, she’d mentioned that a medical test ordered for her son revealed a condition she didn’t know he had. When I read that I thought, If only parents of vaccine injured children had that option—some sort of test prior to vaccinations that would show if the child was susceptible to vaccine injury—if we’d been offered that, maybe some of us wouldn’t be raising medically fragile children like we are. I was happy that she’d found appropriate treatment after that testing, but then my emotions changed. Going back to how important vaccines are, the woman stated that she’d risk for her son the minute vaccine side effects because she’d rather an autistic child than a dead child.
I do so wish I had her exact words to share because the first question she asked is a common question, Why would a parent choose not to vaccinate? The media likes to label people who choose not to vaccinate as “anti-vaxxers” completely forgetting, or purposefully ignoring, that many of us made the decision to not vaccinate based on what a vaccine did to our children. We did vaccinate. We did follow the schedule. And we did so without hesitation. Now a derogatory reference, using the term “anti-vaccine” is meant to divide. Being labeled “anti-vax” also means you are stupid, irresponsible, and the cause of current outbreaks, and potential future ones, according to pro-vaccine groups and politicians and the media. The woman from that online conversation needed more information because most of the people I know who the media, and now the public, label as “anti-vax” are far from stupid.
Understanding the vaccination process, knowing the legal ins and outs of the US vaccine program and vaccine law, and realizing why it’s important to know more than what the media and doctors say is true, “anti-vaxxers” are more qualified to speak on the subject of vaccines than those being paid by the industry are. Moreover, none of the “anti-vax” people I know have superpowers to willy nilly infect anyone with diseases or illnesses. They, as well as the unvaccinated, cannot spread diseases they do not have. That’s just not possible. So many misconceptions surround that term and the people labeled as such, which prompted my friends’ friend’s next question, What turns someone “anti-vax”? While I don’t have her part of the conversation, something told me to save mine. So, I did:
I can't speak for all "anti-vaxxers" who choose not to vaccinate, but I can share a bit of our story. I was once pro-vaccine. 100% for them. It wasn't until after my child suffered an adverse event that I changed my outlook on them. What I was told couldn't happen to my son happened: he was injured by a vaccine. After that discovery, I started to finally read about vaccines instead of taking what our providers were saying as gospel truth. Believe me, I did not want to walk away from them or from what I'd been told my whole life, that vaccines were only safe and only effective. But the more I read, the more I learned. I learned that all vaccines come with risk, that they were not studied as the CDC says they've been, and that for some people like my son, they can do more harm than good. Side effects and adverse events were our reality - not better health or protection from diseases (yes, we've tested this and know that the vaccines did not work). Our doctors could see my son decline post-vaccination and could read what the tests said, but refused to help and only pushed for us to get more shots. I said no more. My son could obviously not handle them, and I was not about to continue to follow the vaccine schedule that they and govt presented. Our docs couldn't give me a guarantee that vaccines would work just as federal agencies that oversee and promote vaccines can't. Today, my son still deals with the negative result of the vaccines he received, and not minute issues either. Seizures, loss of speech, GI problems, gross motor delays, fine motor delays, ataxia, and other medical issues he didn't have prior to vaccination are an everyday part of life. I'll add one more thing since you mentioned it - it isn't just about autism that concerns some parents. It's side effects like intractable seizures, loss of acquired skills, infertility, anaphylaxis...and these days, it's also the trampling of parental rights like having the choice to say no thank you to a liability-free pharmaceutical product that comes with risk that are waking people up about vaccines. And if you really would rather an autistic child over a dead one, you have so much more to learn. Being "anti-vax" was not a choice I ever intended to make. I was forced into that role. Now that I know what I do though, I only wish I'd made that decision a little bit earlier. I wish you the best.
I waited for her reply. None came that evening. No response was there the next morning either.
Did I plant a seed that “anti-vaxxers” are real people and not some bogey man monster type that the evening news says we are? Did I jolt her into thinking beyond what the media is telling her to believe? Did I stir things up just enough for her to stop and think how callous and rude she was to say that she’d rather an autistic child than a dead child? I’ll never know. That’s because after I left my reply, part of conversation on my friend’s page was gone. So was my response. Later the next day, my friend reached out to me thanking me for sharing what I did and confirmed that our little convo was gone. She didn’t take it off her page. I didn’t take it down. It had to have been the other woman who deleted it.
Initially, I had planned on writing a much shorter message to this person, but when I reread what she’d written, I got upset and my reply grew longer. Rather a child with autism than a dead one?? How dare she say something so crude! While my “anti-vax” friends don’t have superpowers, some have lost their child post-vaccination. Proven to be a result of vaccines, that child mattered. How that child died matters, too. Those parents who’ve lost their children are sometimes also called “anti-vax” for suggesting to new parents to ask more questions than they thought to when their child was alive. They are parents whose child died after participating in the vaccine program. How is wanting to help someone avoid what they could not be seen as anti-vaccine or anti-science? It isn’t. These parents deserve more respect than they are given, and my heart aches thinking about the incredible loss they will forever feel.
So, who exactly are the “anti-vaxxers”? We’re people who believed in vaccines. We’re Americans who trusted the government thinking they had our best interest in mind. We’re parents who did exactly what our doctors told us to do. We’re mothers who watched their child get sick and then sicker. We’re fathers who regret not knowing enough, reading enough, or asking enough before it was too late. We’re the ones who took one for the herd. We’re the ones whose children have suffered irreversible side effects and whose children have died post-vaccination. We’re the ones who know that pharmaceutical companies have better legal protection than vaccine consumers do. We’re the ones who now know too much to be silent. Call us what you want, but calling us “anti-vax” won’t stop us. It hasn’t yet. I can think of a few other words that better describe us – driven, educated, vocal, but if you want to use that term “anti-vaxxer” know that it’s much more than the canned description the media overuses when describing parents who think to question vaccines and who stop vaccinating altogether.
I hope before my message was deleted that I offered a satisfactory response to what that woman asked in that online conversation last week. It was clear that she was pro-vaccine, which is her right, but she believed the misinformation the media and mainstream medicine have said about informed parents like me. While I could’ve shared more details about my son’s injury and more about why I walked away from the US vaccine program, I kept my message to her simple: Being “anti-vax” is a way of life that includes protecting my child, preserving my freedom to choose, and supporting her right to choose as well.
Cathy Jameson is a Contributing Editor for Age of Autism.
I was reminded of a post I saw on Age of Autism a few weeks ago. Written by a concerned citizen back in 2015, I don’t think enough politicians read the Resolution which was addressed to the California Democratic Party. After reading it again last week, it could have been addressed to all lawmakers. I don’t believe the politicians backing the bill being referenced in that document listened to the valid issues that thousands of other Californians had also expressed. Dismissing their own constituents’ input, as well as scientific fact, SB277 passed with flying colors.
Another Resolution caught my eye on March 6th. Introduced by Rep. Adam Schiff (D-CA) in the House of Representatives one day after the Senate Committee on Health, Education, Labor and Pensions (HELP) met, it reiterates the committees’ clearly obvious “Vaccines Save Lives”agenda.
Hundreds of mothers from across the country, many with a differing viewpoint than that of the HELP committee, traveled to Congress to have their say that day. But they were shut out of the room. Their first-hand experience and extensive knowledge of US liability-free vaccines, which I share, should have been part of the conversation. Instead of letting their voices be heard, the committee focused only on a small panel of men who presented a one-sided viewpoint of the US vaccine program. Speaking very highly of our country’s liability-free vaccines—and of all that they have done to promote these vaccines—there was no room for anyone to present a balanced view.
Fathers were kept out of the chamber, too, as the hand-picked doctors, scientists, researchers, and an inexperienced high schooler had ample time to say what they wanted, or were scripted, to say. As long as I’ve been part of the parent-led movement, whose aim has been to tell our personal accounts and draw attention to the adverse side of vaccines, I can’t say that I was surprised that Rep. Schiff’s document was so quickly introduced. It’s the main attraction of the Congressional circus side show that both the Senate and the House have just put on for the American people.
Besides contradicting what so many families have experienced, the Resolution contradicts what the US government and what several federal agencies have published about vaccines, namely that all vaccines come with risk.
I’m used to how parents are not heard, as happened in California with the passing of SB277, but it’s more than concerning how we’re being silenced today. For decades, parents have been telling a compelling story.
When it comes to vaccines, we are all uninsured Americans.
By Cathy Jameson
A few weeks ago, our car was involved in a hit and run. We were not in the vehicle at the time, so we did not sustain any physical injuries. Regardless, damage was done. Something, or someone, hit our car and took off. No note was left. No explanation, no apology, no chance to make amends. Despite us not witnessing it or being physically there, auto insurance covered the hit and run claim. They did so with no questions asked. I took photos as soon as we discovered our car had been hit to help prove everything, but they believed us before I offered to send them. Once the claim was filed, the insurance company promised to cover the repairs, compensate the fee of the rental car we’d need while our vehicle was in the shop, and they’d promise to make sure to keep in touch with us during the lengthy repair process. The body shop that conducted the repairs even offered us a lifetime warranty on their work. For the time we own the vehicle, all paint and body repairs are guaranteed. I wish I could say we had the same customer service and product warranty for the liability-free vaccines my son received when he was younger.
Instead of top notch customer service, we got confused looks from medical staff when we mentioned that we thought the vaccines hurt him. Later, when I had to bring Ronan back to the doctor because he was getting sicker, we presented a timeline of the vaccinations received and when new issues started. Referencing dates that were documented in his medical record – and all of the problems that began post-vaccination, we again encountered silence. They’d known Ronan since birth. They’d seen him grow and develop typically to a point in time. But instead of jumping to assist us or to affirm that our hunch, that something happened to our once typically developing child, we were left on our own. That’s in thanks of the National Childhood Injury Act of 1986.
Pharmaceutical companies and those who administer their products, aren’t held legally responsible for vaccine products or what happens after vaccines have been administered.
While we demanded and got the necessary medical attention my son’s medical issues required after liability-free vaccinations failed him, we never got any sort of counseling about what to do next. Why would we? Those we previously trusted denied any wrongdoing. The companies that provided the shots also didn’t have to do anything. Since that Act, which I knew nothing about until after well after we discovered the injury, the pharmaceutical industry has not had to “back their claims”. They do not have to insure that their products come with any sort of warranty either. The Act “Provides that no vaccine manufacturer shall be liable in a civil action for damages arising from a vaccine-related injury or death…” It’s a hard fact to swallow, but it’s true.
Vaccine manufactures have no liability for their vaccine products.
Thank you to the activists and advocates and parents who’ve made the trip to DC for today's hearing including pur own Mark Blaxill and Jennifer Larson. Our nation is riddled with strife, problems, real issues affecting families every day. Measles is not one of them. We've had more deaths by active shooters than measles. We've had more deaths by opiod addiction than measles. Measles in America is not deadly. Measles in America is not measles in Madagascar. The hearing has a not so hidden agenda to push vaccine mandates into the Federal realm. In due time, Americans may have to prove vaccination status when filing income taxes or face penalties. It's a frightening time for our individual rights.
I wanted to be at the Energy & Commerce Oversight and Investigations Subcommittee hearing last Thursday morning. After working every possible scenario to leave home to be there, I just wasn’t able to go. So instead, I watched the hearing on a C-Span link in my home office. I know it could’ve have helped to sit with fellow parents who were there, some of whom have a child with a vaccine-injury like my son has. With how attacked moms like me are, seeing the women in the audience was a comfort.
Sadly, and predictably, the hearing these other moms traveled miles to attend turned out be the one-sided conversation I’d been warned it would be. The testimonies of the expert witnesses sounded more like a scripted pharmaceutical ad than an honest conversation about vaccines. Ads tend to highlight potential benefits and can gloss over actual facts. They are a one-sided transmission of what an industry wants the public to hear. That’s exactly what the hearing sounded like until those moms in the audience broke that transmission. That happened when one of the representatives asked a witness, a medical doctor, a simple vaccine question.
“I’ve heard some parents claim that measles vaccines can cause brain inflammation, known as encephalitis. Is that true?” Rep. Brett Guthrie (R-KY) asked Dr. Anthony Fauci. “Is that true?” Guthrie continued. “Can measles vaccine cause encephalitis?”
ADVERSE REACTIONS (as found on p. 7 of the MMR vaccine package insert)
Ironically, side effects and vaccine reactions are also published on the CDC website – which both doctors giving testimony referenced and encouraged parents to go. Fauci gushed about it only moments before he lied, “The CDC website is just really a cornucopia of important information. It’s easily accessible. Go to CDC.org. Search. Put measles in. All the thing you really want to know about it are right there, with references.”
Guthrie must have known Fauci wasn’t telling the truth because he questioned Fauci further, “There’s no cases?”
Note: Pinterest seems to be under some serious acupressure......
By Cathy Jameson
Will they come after personal webpages?
Will they ban the books that have already been written?
Will they remove our ability to call each other from our home phones, disable our cell phones so we can text each other, or remove emails access from our personal computers?
Pinterest was never one of my favorite websites to visit. But with readers all over the world using all manner of social media platforms including Pinterest, I created an account for Age of Autism there several years ago. Once in a while, when I’d remember to, I’d pin something under our Great Reads, Good Movies, or Friends of AofA boards. A new book to check out, a documentary of interest, or an infographic that was making the rounds on other people’s advocacy pages were what I’d typically pin. Never more than an afterthought though, I’d spend more time adding links and reading material to our AofA Facebook fan page. With a much larger audience, FB was the place to be.
Late last year, I heard that Pinterest was shutting down individual and advocacy groups’ accounts for pinning misinformation about the US’ liability-free vaccines. I knew that it was just a matter of time that AofA would make that same hit list. In mid-December, I received an email from Pinterest that information I’d pinned on our boards long ago were in violation of one of their policies.
When that happened, I wasn’t surprised. I wasn’t sad about it either. Visually unappealing to me, I never cared much for Pinterest’s layout and preferred to spend my time on other social media platforms. I’d honestly forgotten about people’s pages being pulled off of Pinterest’s until a dear friend mentioned it to me on Thursday evening. Friday morning, articles were being circulating about those recent unpinnings. I tried to log on to see if we were still being banned from using Pinterest.
After our much-needed family getaway last week, it was time to get back to reality this week. For the kids, that meant catching up on homework and school projects. For me, it meant reading up on whatever news I missed while we were out of town. I knew that the measles had started to make headlines both here and abroad a while ago. I also knew that some states were attempting to remove parents’ rights again, but I was not prepared for just how much news was being made about measles and vaccines in just the few days we were away. You’d think that the US was under multiple “vaccine-preventable disease” threats! According to the CDC, we’re not.
So what’s all the recent fuss about then? It’s still the mainstream news outlets’ favorite of all seasons – flu shot season, but I’ve seen more stories than ever before about the measles. Some have said that it’s because it’s legislative season. With almost all 50 states in their legislative sessions right now, that makes sense. “Legislative measles” has made for some good news for the media lately! So have other “legislative diseases”.
I missed a lot of news this week. Too busy taking care of things at home while prepping for a much-needed family trip away, I stopped reading about the measles, about states ready to remove religious exemptions, and about other stories the media wanted me to worry about. As important as some of the news topics are, I had other important things on my mind.
Taking a child with seizures and regressive autism on vacation is doable, we've done it countless times before. But every trip, even if we've been to the location before, takes careful planning. I haven't ranked the importance of each, but I must always consider Ronan's health and safety for each adventure we hope to take. Those, and which of Ronan's daily, necessary supplies we'd need to bring while we're far from home must be packed well before I think about simpler things, like what outfits I'd like to bring for me.
Health-wise, we've had a mild winter so far. I reported that to one of the nurses assigned to us days before we left. Curious if we still say no thank you to the flu vaccine because of a reaction Ronan had previously, she asked if Ronan had gotten sick with the flu since last "flu season". I shared, "Nope, he hasn't." "Even without the shot?" she was curious. "Yep, even without opting for the shot," I stated. Ronan's siblings had the sniffles when winter started, but he's been healthy for a good stretch of time. We wanted to take advantage of the optimal health Ronan's been experiencing, so we made plans to leave town sooner than later. The siblings were looking forward to that because it would mean missing a few days of school. I normally wouldn't pull the kids out of the classroom in the middle of the week, but when every door opens for us to go away as a family, we go.
Able to pack their own bags, the kids got their flip flops, swimsuits, comfy clothes, and a few of their books packed right away. Fueled by their excitement, they packed quicker than I could. Requiring loads more time and attention, Ronan can't just walk out of the house with a backpack like his siblings can. He needs multiple changes of clothing, pull ups and diapers including swim diapers, waterproof sheets to put over whatever bed he'd be sleeping in, his favorite books and pictures, a communication device, the iPad, his food, and the blender so that I can puree his food. He wouldn't be too excited that the blender was going to travel with us, but dsyphagia, like autism, doesn't take a vacation. Getting everything ready wouldn't be hard; we have everything he needs at home. It was a matter of making sure I had enough diapers, pull ups...and everything else when we got to our destination. We could certainly buy things where we were going, but I didn't want to have to spend more money than we already budgeted for the fun activities we couldn't wait to do. We were planning on going to a water park, the beach, a museum, and a few other places that required admission. Packing and bringing whatever we could from home, it looks like we're on the run with how full the back of the car is with all of Ronan's things! Medically fragile kids require a lot of equipment. There’s no getting around that. How well our vacation plans go will sometimes depend on how comfortable Ronan is. If he wants all of his comforts of home, we bring them. Once we got to our first destination, I was happy to discover that I only left behind one thing - his toothbrush. I remembered everything else, which is a lot, and was happy to spend a few cents more than I usually would for a new toothbrush.
With how many miles we've logged up and down the east coast since Ronan was a baby, I was not worried about how he would do in the car when it was time for us to hit the road. He does so well! He used to need to be "plugged in" either with a movie or a game on the iPad, but Ronan can now go miles down the road without wanting to play on any devices. The longest trip where he's been content to read or look out the window at the passing scenery has been two hundred miles. That’s a feat for any kid, let alone a child with autism. Many years ago, Ronan couldn't get beyond our driveway without a requesting a movie, and usually one he wanted us to play over and over again.
This trip would be shorter than the one we took at Christmas, but was just as important. We'd be spending time with family. Having gone through some trying times the last few months ago, we were going to be able to put life on pause for a few days. That meant no alarm clocks, no therapy appointments to run to, no phone calls to case managers, and no nagging emails to return. It would be just us doing whatever we wanted for a few days. We'd be in close quarter, but it was the time we'd get to spend together that I was most looking forward to.
I tuned into a talk radio station the other day while a story about a troll factory in Russia was being discussed. Troll factory? My imagination conjured up a Willy Wonka meets Dr. Seuss setting with loads of oddly behaving characters. I’ve heard of trolls wreaking havoc on the internet but hadn’t heard the term troll factory being used before. I had to find out more. Focusing my attention back on the radio, I learned that the discussion was about an investigation about Russians and the 2016 election. I knew about that story and thought that the word troll was a good word to describe those who meddled in that event. One of the goals trolls have is to turn people against each other. When a hoard of trolls comes together to spread misinformation and cause confusion and doubt, they may come from one source like that factory overseas.
Working together to distract and destroy, AofA has had its fair share of trolls over the years. Trolls haven’t just descended here on our posts; we’ve encountered them on our social media pages, too. Interfering in parent-to-parent online conversations, they work hard to discredit us. Regardless of their persistent criticism and attacks, some of them personal, we’ve remained vigilant to our mission – sharing resources and parenting stories with those who seek information about autism and other topics related to autism, including liability-free vaccines.
Our goal is simple – share knowledge and our experience.
Their goal – make us sound crazy at all costs.
Leaving negative messages wherever they can, I see an increase in troll presence whenever a story about liability-free vaccines makes the news. They come out in full force when the diseases those liability-free vaccines haven’t prevented is in the news, too. Quick to blame the vaccine hesitant, the under-vaccinated or the completely unvaccinated, an outbreak couldn’t possibly be the fault of a vaccine, they spout. When we point out that vaccines have been recalled in the past, have lost their efficacy over time, and have not been studied as officials claim they have hasn’t helped. Rather than learn those truths, trolls insist it’s always the fault of the unvaccinated.
I don’t spend too much of my time in their arena, but sometimes I can’t help but notice their input. They are vocal. They are persistent. They are everywhere. Are they being paid to leave their thoughts on as many vaccine news threads as they do? I can only assume that there’s some sort of financial incentive. Why else would these complete strangers verbally abuse parents of vaccine injured children at the rate they do?
With abortion in the news earlier this week, I took some time to reread a few articles about the practice of using aborted fetal cell lines in pharmaceutical products. I also started to watch the deposition of Dr. Stanley Plotkin who is considered, by some, to be the leading expert on vaccines and vaccine development. I wish I could say I was shocked when I heard what he said in the video about abortion and vaccines, but I'm not. Plotkin readily admits that tissues were harvested from quite a few normally developing fetuses who were intentionally aborted. He and his co-workers decided to use those tissues as ingredients in vaccines, which are sometimes listed as human diploid cells in the package insert. To my knowledge, those original cell lines, as well as newer fetal cell lines, are still part of vaccine production. Many pro-lifers state that they want to protect life from the moment of conception. All life! From womb to tomb! At all costs! No matter the circumstance! But I find them silent when I bring up the undeniable fact that aborted fetal cells are part of vaccines. While some pro-lifers have spoken up about this heinous practice, not every pro-lifer has said enough is enough. Churches either remain silent, too, or skirt the issue. Plotkin referenced the Catholic Church at one point in his deposition. I am saddened that he, and my Church, turned a blind eye on the act of willfully ending human life for "a greater good" years ago. I'm utterly disappointed that they, and too many others, continue to turn a blind eye today. - Cat Jameson
I’m sure many of our readers are aware of the vaccine ingredient I’ll mention in today’s post. Others have already written about the topic and covered the facts well. Living Whole and Children of God for Life, for example, have bravely spoken up about the use of aborted fetal cell lines in vaccine production. I applaud them. I wish I could applaud more pro-life groups, but I hardly see them speak up about the topic.
I say that I’m a hardcore Catholic. But even I’ve yet to take on this subject. If I were serious about it, I’d have contacted the leaders in my Church about it. Some leaders have spoken, but their very broad statement seems more of a CYA than anything (and I’m not referring to Catholic Youth Association if you get my drift).
Note: Meet the New Jan Brady, I mean Paul Offit. Seems Dr. Peter Hotez has taken over the pit bull tactics founded by the Broad Street Bully himself, Offit. His tactic is to use his daughter to protect the vaccination program. For the record, if true, we are delighted that Ms. Hotez was not vaccine injured into her autism. It's a terrible feeling to know that something you did for your child to protect her, could have gone so badly. Isn't Dr. Hotez lucky he doesn't have to deal with that pain.
By Cathy Jameson
Last week, The Hill featured a piece from Sharyl Attkisson’s latest Full Measure news story. In it, we learned that
“Pediatric neurologist Dr. Andrew Zimmerman originally served as the expert medical witness for the government, which defends vaccines in federal vaccine court. He had testified that vaccines do not cause autism in specific patients.
Dr. Zimmerman now has signed a bombshell sworn affidavit. He says that, during a group of 5,000 vaccine-autism cases being heard in court on June 15, 2007, he took aside the Department of Justice (DOJ) lawyers he worked for defending vaccines and told them he’d discovered “exceptions in which vaccinations could cause autism.”
“I explained that in a subset of children, vaccine-induced fever and immune stimulation did cause regressive brain disease with features of autism spectrum disorder,” Dr. Zimmerman now states. He said his opinion was based on “scientific advances” as well as his own experience with patients.”
Two days later, The Hill published another piece on vaccines. It was not another bombshell discovery in favor of parents of children with liability-free vaccine induced autism but a rebuttal from Dr. Hotez. If you recall, Hotez is a pharmaceutical-industry spokesperson, author, and father to an adult daughter with autism. He’s frequently seen on TV defending vaccines when they cycle through mainstream news’ media stories. Besides a staunch defender, he is also of the belief that vaccines do not and cannot cause autism.
There is no link between vaccines and autism. I trace the modern anti-vaccine movement alleging vaccine-autism links back to 1998 when a paper was published in The Lancet, a prestigious medical journal, claiming that the live measles-mumps-rubella (MMR) vaccine (especially the measles component) might lead to pervasive developmental disorder, a term then used to refer to autism.”
After scrolling through some posts and photos on a social media webpage, I went back to read a few of the comments I’d skipped over. I thought that one post, which was about vaccine choice and why it’s important, would surely spark a conversation. The person who’d shared the post offered some personal information with the photo and why they advocate for it now—years ago, their child was negatively affected by a liability-free vaccine. Most of the comments that had been left were sympathetic. Some were in support of vaccine choice, but one person’s remarks made me pause:
“I don’t think you really mean that the shot caused your child’s problems, do you? Because that doesn’t happen…does it?”
I believe the commenter was not a troll and was genuinely asking for clarification. Maybe they had never experienced a reaction post-vaccination before. Maybe they hadn’t taken time to look beyond what many doctors and what our government says about vaccines (that they are “always and only safe and effective”). Maybe they didn’t have children yet and didn’t know that the US vaccine program recommends more liability-free vaccines now than ever in the history of the vaccine program. No matter what their vaccine status or stance was, the response they left needed an answer.
After the first Vaxxed movie was released, families offered to go on camera and share their stories. Polly Tommey and the Vaxxed crew offered to record those stories. Thousands of stories told by thousands of families from all across the United States and abroad shared eerily similar reports. The running theme? Their child was developing. Then they received liability-free vaccines. Then they got sick. Vaxxed II endeavors to share those stories.
Before we headed south to celebrate Christmas with my family, I created a mental checklist. Most of the items I had on that list had something to do with Ronan and the things he’d need for our week away. The top priority was to make sure his seizure medication was filled. We had a disastrous experience getting his meds filled a year ago right before we took a road trip north. I did everything right for that other trip – making sure the script was correct, calling and ordering his meds on time, and clearing an entire day to pick them up when the pharmacist said they’d be ready. Despite that, the medication was not ordered, not ready, and not available. The thought of having to repeat every awful moment of tracking down what happened and figuring out who didn’t do their job correctly like I had to last January but me on edge. So, for our Christmas trip, I prepped a bit earlier.
It didn’t help.
Pharmacist: Mrs. Jameson, there’s a problem with the order.
Me: Problem? It’s the same prescription. Same strength, same dosage, same everything just like every single month that we order this.
Pharmacist: Yeah. Sorry.
Me: Sooooo, are you going to do anything about it or do I have to?
Pharmacist: Oh, we can work on it for you if you’d like.
IF I’D LIKE?!
I was fuming. I’m not the pharmacist, I’m not the doctor, and I’m not the insurance company. That means I’m not the one who, with one quick click of a button, can make things go through. Of course I wanted them to work on it!
Me: Well, since he is still having seizures and since he still needs that medicine, yes, please do something about it.
Pharmacist: Oh, okay.
Me: How soon can you work on it? We have a trip planned and that medicine was promised to us before we’d leave town.
Pharmacist: Well, I guess I can work on it now?
More fuming. I could’ve ripped her a new one right there on phone. But I needed that medication sooner than later and for everything to be correct, so I kept my emotions in check. I’d save a tongue lashing for later once the order was done and in my hands. Before I replied, I attempted to compose myself.
Me: You guess? Or, you will?
Pharmacist: I can do it right now, Mrs. Jameson. I just need to push it through. We’ll send a text when the meds are ready.
I was traveling with my family for the Christmas holidays when a sign on the highway took me by surprise. An electronic reader board in South Carolina flashed a message:
973 TRAFFIC-RELATED DEATHS IN 2018
It was sobering to see their statistics. With how many people were on the road that day, I prayed that we would get to our destination safely. We did and enjoyed each other’s company with very grateful hearts.
When we made our way back home a week later, another electronic message greeted us as we crossed into Georgia. Similar, but with a greater number of fatalities posted, I was immediately more aware of how many cars were zooming past ours.
1430 VEHICLE DEATHS/142 MOTORCYCLE DEATHS THIS YEAR
*older photo found on google images
While thinking about how miles we traveled (over 1,000) and how many hours we were on the road (over 20), I am happy we made it home with no incidents. I hoped that others were able to do that as well.
After getting home and catching up on some news, including stories on some of the social media pages that I follow, I saw that Nick Catone recently shared a post on his Facebook page about billboard signs that have gone up in memory of his son, Nicholas. The idea of sharing his son’s story got me thinking about those electronic highway signs we saw last week about traffic fatalities. Imagine if we could generate road signs warning parents to do just a little bit more reading than the might do regarding vaccines. Back when I was a younger mom, I didn’t think to read much at all about vaccines. I knew what my doctor told me, and that was it. I thought that was enough. I can tell you now, as the parent of a vaccine-injured child, that the information I was given was not enough.
I didn’t know that, per the CDC, all vaccines come with risk.
I didn’t know that vaccines, like all pharmaceutical products, could be recalled.
I didn’t know that those who manufacture and administer vaccines have more legal protection should something go wrong than I, the consumer, has.
I didn’t know that when a vaccine injury occurs, I have no recourse to do much about it.
Cathy JCathy is away with family. Here’s a “Best of” frpm a decade ago with an updated photo of handsome Ronan, who just turned 16.
By Cathy Jameson When I want to be a couch potato and stare bleary-eyed at something other than my computer screen I watch those 20/20 and 48 Hour television shows. I like the informative, educational and entertaining twists presented on prime time. I’ve always been an info junkie which I am pretty sure has helped me find and bring back my son injured by vaccines. While Ronan never physically left me, his body shut down from the top of his brain that stores his intellect to his tippy toes that tell me constipated poops are on the way. Television news in late 2007 had me so riled up though. I didn’t have the desire to watch another report about the flu season creeping up on America. The inevitable flu shot promotional parade began with media ads plastered everywhere. I couldn’t even go grocery shopping without running into a flyer luring shoppers into a flu shot frenzy. Later, I didn’t have the heart to hear about tainted vaccines recall or the blaring Gardasil prime-time commercial spot. Yet despite all the fanfare, the vaccine-connected autism I believed to be true never seemed part of the broadcasts. Who wants to watch the next generation succumb to mainstream media’s misinformation as my own son did? I’ve become a scientific seeker of truth and, as The X-Files claims, the truth is out there. I want to know everything there is to know about vaccines from their toxic ingredients to their long-lasting effects. Unlike television’s reality shows, my reality involves reading, utilizing and sharing the information I’ve gathered with listening ears of family and friends. I was drowning in the flu shot frenzy when I again became angry about what we parents have gone through with our vaccine-injured children. This year’s flu shot is apparently ineffective for the current flu strain according to a CDC report from February 2008. What do you say to those people who diligently lined up being assured they were doing the right thing to prevent a flu epidemic? Come on, people, how can we put up with this? Oh, sure we’ve been promised that the 2008-09 flu shot is going to get a ‘makeover,’ but how dare the public be lead astray yet again about vaccines! I admit that just a few years ago, before I had a clue, I was one who believed the flu vaccine hype. I insisted my two oldest children got their jabs. Unfortunately it was that flu shot that was the final straw sending Ronan over the edge to neurological misfortune. Unbeknownst to me he was deteriorating slowly from his other childhood vaccines. The two flu vaccines he received right before his second birthday brought him into a world I’m scrambling to bring him out of. Ronan’s sweet, bubbly, curious personality vanished thanks to traces of thimerosal coursing through his tiny veins. My research takes me on a roller coaster of sorrow and anxiety. I watch Ronan flounder as he also rides a non-stop roller coaster of impatience, struggling to communicate, straining to be like his siblings but unable to figure out how, eager to function like a five year old but with only two- or three-year-old skills. He knows he is different and he doesn’t seem to like it either.
Well, after I prepare his foods and feed him, he gets just a little break. Feedings can be tricky because he’s gotten picky about some foods. After breakfast is over, it’s time for therapy.
Ahh, yes. Feedings. I remember those days. I’m sure he’ll come around.
How many hours of therapy does he need?
Actually, if he can tolerate it and won’t need to rest midday, we’re going to increase therapy hours after the new year.
That’s wonderful! What are his latest milestones? Anything finally clicking?
He’s learning to communicate his wants better, and almost staying with an activity through to completion. He’s showing more signs that bathroom skills may be the next big thing…
Like sitting on the toilet??
Wouldn’t that be a dream come true!
It would. Do you think he has the motor skills for it?
I do, but the big question is does he have the sensation for it. You know, when he’s doing something he wants to do and is really engrossed in the activity, it’s like he can’t even tell he’s soiled his diaper.
I’ve heard that before. What else? Any other self-help skills he’s close to mastering?
He’s getting there…clearing his bowl and plate from the table, tucking in the dining room chair he just sat in, helping make his bed, putting dirty laundry in the laundry room…some basic, typical skills.
Ronan needs full assistance for many of his daily living skills. It makes for a lot of work on my part, but I do love that he understands more prompts this year compared to last year. Baby step by baby step, these skills can help lead to more independence. The latest one we have been working on, “Time to get your shower.” He did it! I just need to be one step ahead of him next time to help with his pajamas because, boy, was he ready for his shower right after he got up this morning. Go, Ronan!
I shared that picture and that note above on one of my social media accounts last week. I posted it not just because it was a pretty cool photo if I do say so myself, but because it was so perfectly us. If I had a file for photos such as that one, I’d name the file This Is Autism.
Thinking about that photo and why I took it – because, in our house, that really is autism, I remembered a few more images that also fall into that category. They include the siblings, the work it takes to keep Ronan safe, loads of emotions and a brief story about why I wanted to freeze that moment in time. The severity of autism that Ronan displays is so often downplayed in the news and on feel-good TV shows. Because of the misrepresentation and limited exposure of non-verbal regressive autism, people don’t realize how difficult life can be for the child with that diagnosis. Whey won’t ever understand just how draining it can be on the caretaker either. It is tiring. It is frustrating. It is why some parents are afraid to die. With the autism rate at 1 in 40 and rising, who will be left to take care of our child as well as we have? Who??
The autism we live may not be what the media or the public believes autism to be, but it’s our story, our reality, our truth. Care to see what that looks like and how much more complicated it can be? Continue reading. If you do continue to read, please keep in mind that as I share these images, they are posted in the hopes of educating others. Life with autism has ups. It has downs. It can be frustrating and loud and confusing. Thankfully, those living life with autism bring moments that are also rewarding. No matter what has happened as a result of autism, I always remember afterward to find the joy. The main subject of my photos reminds me to do that daily.
I was at a physical therapy clinic with one of the kids last week. While my daughter was getting settled in with her exercises, I scanned the room and saw a handful of staff and patients. Everyone was engaged in whatever activity or job they were assigned to do. Even as busy as they were, there were several conversations going on. With how open the room was, I couldn’t help but hear bits and pieces of the chatter going on. No one seemed to mind which is why one of the PTs had us all laughing when she wisely and loudly told the young twentysomething male PT assistant, “Just you wait! When you hit 40, it’s all downhill from there. Mark my words… enjoy yourself – and your body - now while you can.” A few of us fortysomethings nodded our heads in agreement. Then the entire room erupted in laughter, including the other PT assistants who enjoyed the ribbing their co-worker had gotten.
Life after 40. You’ve probably heard the jokes:
Forty is when your body…
Gives your brain a list of things it’s not going to do anymore!
It’s a cruel irony that when you get to be two times the age of a 20-year-old…
You only have half the metabolism!
40 is when you finally get your head together…
And your body has other ideas.
After you turn 40…
Every time you suck in your gut, your ankles swell!
Chicken pox was in the news again. Quite a few children from a school in North Carolina have come down with it. Local media quickly picked up the story. National and international media outlets copy/pasted that story and turned it into a major headline. When my kids caught the chicken pox, it wasn’t front-page news. But that was way back then. Today, things are different. I noticed how different with each news story I read over the last two weeks.
It wasn’t so much that children caught a childhood illness that was being reported. More focus was on the parents of these children. Making sure to point out that the kids were at school with a religious vaccine exemption, as they have every right to be, the parents were made out to be irresponsible. What a world of difference life is for today’s parents whose children get sick with chicken pox compared to those depicted years ago. Name calling was non-existent. Judging a parent and their beliefs was unheard of. As was the case when my kids came down with it, chicken pox and the temporary inconvenience it’s known to bring, was simply part of life. I was reminded of that after seeing two television show reruns about two months ago that included characters coming down with chicken pox. After seeing those shows, which were quite popular when they originally aired, curiosity got the best of me. How many other shows used this illness in their stories? I had to find out.
The more titles I searched, the more shows I found that included chicken pox! What was interesting to note was the media never swooped in to badger any of these characters. Why would they? As Arthur’s father states matter-of-factly in the kid’s show Arthur, the media would never be involved in the storyline because, “It’s chicken pox. It’s just a normal childhood illness. I had it…your mom had it…” (Season 1, Episode 18; 1997) https://www.youtube.com/watch?v=__aSJkgOyrc No big whoop, right? Same goes for Caillou. He’s also told by his mother just the facts, “You won’t be sick very long. You’ll see.” And how right she was! He really would be outside playing in the garden soon enough. (Season 1, Episode 52; 1997)
Since it is a contagious disease, other shows were sure to feature multiple characters being sick. Several family members from Full House dealt with the disease together in A Pox in Our House (Season 1, Episode 15; 1988). I don’t usually read YouTube comments, but I started to while looking at this clip. If you read through them, you’ll see that most are positive and about the cuteness of the events in the episode. Seemingly out of the blue, one person chimed in stating that a chicken pox vaccine was not around when this show aired. While one was not licensed here in the States until 1995, a live attenuated virus vaccine had been in production in Japan as early as the 1970s. It wasn’t until 1988 that a chicken pox vaccine was released in Japan and also in Korea.
Vaccine availability or not, shows that aired beyond the year 1995 continued to include chicken pox-themed content. Writers of children’s and family shows, as well as prime time sitcoms, continued to add humor to these scenes as well. That was apparent when Chuckie, from Rugrats, was convinced by his pals that the chicken pox was going to turn him into a real chicken in the Chicken Pops story. (Season 4, Episode 4; 1997). That’s just a short clip. The full episode can be seen here but requires payment.
Until another person walks in our shoes, they may never truly grasp how challenging life can be for those with autism and vaccine injury as well as for those who care for them. That said, I think it’s important to share our stories whenever and wherever we can. Not that we have to prove to anyone that our sacrifices are real. Those sacrifices are as real as the vaccine injury that changed life as we knew it.
That thought has run through my head several times over the last few months. Since late August and up until last week, Ronan's siblings were participating in team sports. Multiple times a week, I was dropping off or picking kids up from late afternoon practices and evening games. Some days, friends blessed me and took over carpool duties. As much as I could, when three kids were in three different directions at three different sport venues, I still tried to get to their games. With Ronan and my youngest in tow, getting to everyone wasn't easy. Just getting out of the house took effort on Ronan's part.
When he was successful in getting himself to the car without incident, any time I buckled Ronan in, I hoped and prayed that he'd be accommodating to what was next on the schedule. After traveling, he’d be tasked with sitting for at least one hour on the sidelines while I cheered loudly for whomever was on the court or the field that day. When we could, we’d even try to get to two events which meant twice as much sitting and twice as much cheering. Sitting and listening to me cheer for his siblings is not Ronan’s favorite thing to do. Regardless, I prayed that he would be patient and engaged in the items I'd brought for him so that we could stay until the final whistle blew. Happily, Ronan did a great job no matter on which stands, home or away, we sat.
As we left the final event for my oldest daughter recently, one of the staff at the high school recognized and greeted me. I'd met this woman last school year after an unfortunate parking lot incident. Not one to complain unnecessarily, I'd kept quiet about what I’d seen previously in the parking lots. But this time, when another driver's attitude was just so rude, I knew I had to speak up. Even though we were only a few weeks into the school year, I'd seen one too many cars parking or blocking the handicapped parking spots on school grounds. Besides the fact that it's illegal to take these spots unless you've got a handicap placard, it was royally screwing up Ronan's chance for success. Once he gets in the car, we pray earnestly that he'll want to get out of the car when we reach our destination. This rude driver didn't care about Ronan, or the fact that they were breaking the law, and offered some unkind words in my direction after I’d asked them to move and park in one of the many open regular spots just a few feet away.
It doesn’t matter what your title is, how rich or poor you are, or where you grew up. What matters is if you have compassion toward others, especially toward those who struggle.
At Mass last Sunday, one of the verses in one of the readings stayed with me through most of last week. From Chapter 12 of Mark’s Gospel,“…to love your neighbor as yourself' is worth more than all burnt offerings and sacrifices."
That’s the second part of a reply Jesus gives when He’s asked what the Greatest Commandments are. Over the course of my life, I’ve heard Love your neighbor as yourself countless times. But it wasn’t until last week that I really reflected upon the rest of the verse. As I pondered it, especially the part that says, “…[it] is worth more than all burnt offerings and sacrifices,” I was reminded of a few people.
The people who stuck out the most in my mind were the ones who’ve been in the thick of things just like I’ve been. They are from all walks of life and with varying backgrounds – medical professionals, educators, therapists, counselors, homemakers, businessmen, and businesswomen. Not only is our background completely different, so is our political thinking and so are our religious beliefs. Despite that, we share so many similarities. That’s because autism and vaccine injury do not discriminate. They, too have a child with regressive autism. These other parents have experienced the same emotions that came with that diagnosis like I have. They’ve made as many sacrifices as well.
Since Ronan got sick over a decade ago, I’ve met other people, too. Also from all walks of life and with varying backgrounds, I’ve met people who've been sympathetic when I share the story of how drastically life changed for my son post-vaccination. I appreciated that they at least offered to listen. Several took what they heard me share as a warning. Others didn’t. They used it against my character. That’s only happened a few times face-to-face, but some people I’ve “met” online have been less open-minded and courteous with their replies. They’ve been judgmental and downright rude when I offered the details of how my healthy child started to lose skills after a round of shots. Saying that I don’t know what I’m talking about or that I’m just one of those anti-vax ‘crazy mothers’, they left conversation angry at me instead of enlightened. It isn’t very neighborly of them, but I don’t mind being called a crazy mother. Crazy mothers get things done. They start schools, they write books, they help pass state bills, they donate their time, and they go to Congress to speak up.
The new generation of crazy mothers, the younger mamas, have taken to speaking up by taking to the airwaves via podcasts, Facebook live, Periscope, and YouTube. I’m not saying that I know of any veteran moms haven’t, because they have done that also, but I couldn't have asked for better new recruits to fall in with us. These moms are calling our representatives out. They’re confidently calling out industry leaders, too. (My favorite from that clip is Hillary’s comment. Start at minute 8:20. If you’ve been at this as long as I have, I think you will not be disappointed in what she has to say.)
A few weeks ago my son needed a haircut. Unable to get him to the place he likes to get a trim, I had to take him to a different place. He didn’t get the best cut like he did the time before, but it got done. I told Willem I’d do better to get him to his regular barber next time. It’s a great little place where he normally goes. I’ve only ever had one problem there – the television stays on and loudly. With how the chair was situated during his last cut, Willem had a completely unobstructed view to everything on the screen. I’d have been absolutely fine with that, but I was not too keen that he watched a daytime soap opera for the first time that day. Let’s just say that I had to explain more of a steamy plot than I’d have liked to.
While Willem winced and tried to look away from the TV during the hot and heavy soap opera scenes, I was already preparing a quick chat with him: Hey, Little Buddy. Yeah, some of that show’s content…wowzers! It certainly wasn’t for kids, but that stuff does happen. The lies, the cheating, the scandalous affairs and the backstabbing. That’s part of real life for some people. On our way to the parking lot, I did say all of to my son. He replied, “Yeah, I know. But geez, the actors were so fake and too over-the-top.”
I agreed, “Yep. It’s a little worse than when I was a kid, but that kind of drama has been part of television for as long as I can remember.” Before changing the subject about having enough time to go grab lunch together, I wanted to ask him one more thing, “What else did you notice?” Immediately, Willem shared, “Oh, the commercials. Mom, they were so…strange. Most were pharmaceutical commercials.”
He learned quickly that one cannot avoid the onslaught of pharma ads when tuned into a mainstream media television station.
Ronan’s younger brother continued, “Geez, did you hear all those side effects they can cause? They make the actors look all happy and life is perfect while they take the drug, but the side effects they list. They can cause other problems, some pretty bad ones, too. And some may cause death! That makes you need to get other medication. Well, you can get more meds for the side effects as long as you haven’t died from the first drug’s side effect: Here take this pill and it’ll help your diabetes but – be careful, you may die if you take it! It’s crazy. How’s that for getting you healthy? I guess it’s just a price you have to pay.”
“You take a risk in using the medicine they’re paying a lot of money to advertise,” I started. “And if something bad happens when you take that drug, you deal with the consequences, not the doctor who prescribed it. You have to live with the damage that’s done and hope that it can be reversed.” Willem and I returned to that conversation the other day when we were home. It happened after we watched an old 80s show we found online that included every commercial break. During that 60-minute show, not one prescription drug commercial was aired. Over-the-counter ads were part of the hour-long episode, but nothing needing a script.
I was at the playground with youngest the other day. It was one of the first real fall days we’ve had and a perfect day to spend outdoors. As my daughter and I held hands walking from the parking lot to the playground, I could see a bunch of kids running all over the place. Some were climbing, others were sliding, and a large group was playing tag. Some stood still as if they had been frozen. Ah, Freeze Tag. I remember it well. But when I got closer, I listened to what the kids were saying – Help, infection! Do you need healing? Yes, save me! What an odd conversation. I slowed down my pace so I could keep watching. With a simple touch, the Healer tapped an infected boy. That simple tap released him from his frozen stance. What an odd game!
I later learned that it wasn’t Freeze Tag. It was a game called Infection. I remember my oldest daughter telling me about the game back when she was still playing on the playground. “It’s just like the original Tag game, and also like Freeze Tag, but has some different elements.”
I’ll say it does!
Instead of continuing our walk around the playground that beautiful fall day, I stuck around and quietly listened some more.
“Help me! I need healing!” another boy yelled to a group who’d just run past him.
“Don’t touch him…he’s infected!” a girl squealed as she scampered off. Constant chatter could be heard as “zombie” kids zipped around the monkey bars toward the slide.
Who needs healing?
Getting caught up in the excitement, I wanted to yell out, “Ronan does!”
Oh, how we’d love to see that happen. One of my other daughters desperately wants her brother to be healed. She and I stayed up late one night last week talking about Ronan. Izzy had heard a conversation about vaccines and was curious about the adjuvants, like aluminum, that are added to some of them. She knows that some kids cannot detox metals and could be worse post-vaccination than pre-vaccination.
“Why do people think we’d be better off with all that stuff in our bodies? It doesn’t make any sense,” she said.
Back when I was pregnant with my younger son, I asked for a flu shot. I’ll never forget that day. I was about four months pregnant and going in for a check-up with my OB. Looking haggard and desperate, I had just left the hospital where Ronan had recently been admitted. Once in the exam room, I told the nurse that I only had a few minutes for the appointment because I needed to get back to the hospital.
I don’t remember the entire conversations, but I do know that I shared that, “Ronan’s sick…the croup…terrible cough…several breathing treatments…also has the flu…yes, had the flu shot, too…so strange! I don’t want to get sick or jeopardize my baby (in utero)…do you have flu shots here for me?” Sympathizing with me, she said she was sorry but that I was out of luck. They didn’t have any. Citing a state-wide shortage, they’d run out only days before. The nurse suggested I call my primary physician but warned me that local doctors had exhausted their supplies also. Those who had any left were offering the shot only to children or the elderly. They were top priority. I was flabbergasted.
What about me?!
I walked out of that office so worried. The flu! It’s awful! It’s only going to get worse! Get the shot – it’s the only thing that’ll save you! The news was selling more fear than facts that year and would continue to do so until the end of the annual flu shot season. Tired, pregnant, and feeling lost, those next few weeks were not an easy time for me. But knowing our family’s medical history now, I can only imagine how damaging that flu shot could’ve been for Ronan’s younger brother.
Back then while pregnant with my second son, I thought I was doing me and my baby a favor by confidently asked for flu shot. Since I couldn’t and didn’t ever get one, I know that I escaped the risk that comes with it. Some women today don’t escape that. These days, they don’t have to ask for a shot like I thought to. They’re being told to get it. Some do and possibly without realizing that what they’re being told doesn’t match up with what’s in the vaccine inserts:
There are insufficient dataon FLUARIX QUADRIVALENT in pregnant women to inform vaccine associated risks.
There are 0for AFLURIA in pregnant women to inform vaccine-associated risks in pregnancy.
It is not known whether AFLURIA is excreted in human milk. Data are not available to assess the effects of AFLURIA on the breastfed infant or on milk production/excretion.
Safety and effectiveness of Fluzone Quadrivalent Southern Hemisphere have not been established in pregnant women or children less than 6 months of age.
Safety and effectiveness of FluMist Quadrivalent have not been established in pregnant women, nursing mothers, geriatric adults, or children less than 2 years of age.
If that’s all true, how’d this story make the rounds last week? It’s saying something different – that the flu shot protects women and their babies. It doesn’t do that just during the pregnancy but after pregnancy, too.
After reading that news story that sounded more like a vaccine advertisement this week, I just sat and shook my head. How can they say that the flu shot is safe and effective for pregnant (and nursing mothers) when the literature from the government agency that approves vaccines says otherwise? How confusing! More confusing is that other vaccine package inserts, like the Tdap, also include that recurring insufficient data statement. Pushed heavily on pregnant women – and on family members wishing to hold the baby, the data about pregnancy and vaccines doesn’t seem to add up. So, just like last week when the flu stats didn’t add up, I had to keep reading.
I read that more than 80,000 Americans died from the flu last year. For years, a much lower figure of 36,000 deaths usually circulated in the news. At one point, the CDC gave a different estimate of 3,900 to 49,000. I couldn’t recall seeing numbers as high as 80,000 before, so I did a little bit of reading about the flu and how it’s tracked. With how many national, state, and local webpages there are devoted to flu statistics, I learned a lot! I haven’t had time to go through everything there is out there, but with that glaring headline that’s making the rounds I’ll be sure to keep reading.
The very first tidbit that caught my eye was the CDC’s yearly statement about flu deaths on their own website. After reading it on several flu summary pages, that 80,000 stat seems to negate what the NYT and other media sources are repeating:
How many people died from flu during the 2017-2018 season?
While flu deaths in children are reported to CDC, flu deaths in adults are not nationally notifiable.
How many people die from flu each year? (2016 – 2017)
CDC does not count how many people die from flu each year. Unlike flu deaths in children, flu deaths in adults are not nationally reportable.
How many people died from flu during the 2015-2016 season?
CDC does not count how many people die from flu each year.
How many people died from flu during the 2014-2015 season?
CDC does not count how many people die from flu each year. Unlike flu deaths in children, flu deaths in adults are not nationally reportable.
Ad nauseum to the 2006-2007 yearly flu summary page:
How many people died from flu during the 2006-07 season?
Ronan said my name the other day. He was trying to get my attention, and boy, did he ever! He wanted his iPad while we were in the car, but it needed to be charged. As I sat at a red light, I saw Ronan in the rearview mirror signing for his iPad. “iPad, iPad, IPAD!” He really wanted it. His facial expression and rapid signing let me know that. Even though he was communicating his request well, I told him he couldn’t have it yet. I reminded him that the iPad was charging and that he’d get it soon. Further down the road when we stopped again, he took his attempt to the next level. That’s when I heard Ronan. Then I heard him again as he said, “Ma…” I whipped my head around so fast and stared at my non-verbal 15-year old in the backseat.
“Ronan! Did you just say….mom?!”
Looking me straight in the eye, Ronan stared at me and then muttered loudly, “Ma…,” and smiled back at me. I never knew how beautiful a two-letter word could sound.
Ronan doesn’t talk. He lost his speech post-vaccination over a decade ago. We get many vocalizations, but clear words are few and far between. But one day last week, he spoke with purpose, with inflection, and with a smile. He’s said ma (and mum-mum) before, but it’s been a very long time since I heard his sweet, and now deeper, voice asking specifically for me.
When he does attempt to speak, we can hear vowels. We can hear consonants. We can hear inflection and emotions. He’s in there. We believe his voice is somewhere in there, too. In all honesty though, whatever does come out of his mouth usually sounds like muttered jibberish. That’s frustrating for us and very frustrating for him as well.
Ronan never stops trying though. Either with sign language or by typing his requests, Ronan tells us exactly what he wants. Every now and then, like last week, we’ve been blessed to hear his voice. Only one or two words at a time, we love to hear him speak.
Late Thursday evening, I took a few minutes to catch up on some autism and vaccine news I’d seen earlier in the week. FYI: A lot has happened over the last few days! Two groundbreaking books debuted, one on the autism epidemic and the other about the HPV vaccine. Live interviews with several prominent advocates in the autism/vaccine community took to the airwaves, and jaw-dropping discoveries and demands were made by Robert F. Kennedy, Jr. and the Children’s Health Defense. While I’m elated that more information is being shared worldwide about vaccines and autism, reading through last week’s news crushed me.
Recently discovered evidence provided by Kennedy and Hazlehurst details obstruction of justice and appallingly consequential fraud by two DOJ lawyers who represented the Department of Health and Human Services (HHS) in 2007. These actions led to a denial of justice and compensation for over 5,000 families who filed claims of vaccine injury leading to autism in their children.
It’s not the first time that that sort of news has left me reeling. Our community’s learned other things too late before. That happens when we find out that someone didn’t do their job or that something that was done years ago didn’t have to happen. I’d love to hear that we’re only making progress but have sometimes been left feeling defeated instead...
Even with all the frustration those sorts of news stories bring, I admit that there is bit of a silver lining. People are seeing this information go across their newsfeeds, they’re reading it and also talking about it. That part is thrilling! But in the same moment, my emotions will sometimes take a hit. It’s just so heartbreaking to know that we have been let down. I always hope that these stories won’t consume me, but how could they not? The autism journey I’ve been on has had countless ups and downs. I’ve gotten used to that, but I never expected the pitfalls I’ve encountered to have stemmed from organizations and leaders I was told to trust.
So many families have been misled by the experts. Too many still are.
Call me naïve, but it still hurts to know that people in high places have never, and will never, have my child’s best interest in mind. It’s a shame that I had to learn that the hard way, but thank goodness I learned it when I did. From that unfortunate experience, I learned how to be a better advocate not just for my son, who regressed post-vaccination, but for all of my children. These kids of mine - they are my pride and joy! God help anyone who tries to get between them and me.
By the weekend, I dug myself out of the doom and gloom that the news had put me in last week. Brave souls are helping validate what so many of us know, and I want to shout to the rooftops. How many times have heard or read that vaccines don’t cause autism when we parents know otherwise. So often. Too often! It’s taken awhile, but lies made by our government and their representatives are being revealed. Data that supports our children’s poor decline post-vaccination is being discovered. All of that is being shared with the masses. It may not be on the mainstream news yet, but these latest books, these live interviews, and RFK Jr’s discoveries are good. The more he and his crew dig, the more we can teach future generations what to avoid. If families can avoid the atrocities some of us were unable to, imagine the possibilities!
Fast forward to 2018, and that secret serum is changing. This year, we’re being told that some flu shots are now preservative-free, egg-free, and even antibiotic-free. FLUAD, and some other quadrivalent vaccines, wouldn’t be a great option for those with egg allergies. Since the process includes use of embroynated hens’ eggs, it’s probably why I’ve seen more talk of egg-free options this year. While reading up on that news, I continued down the vaccine rabbit hole to look at other flu vaccine package inserts. Now, I’ve known that some vaccines contained animal proteins before, but the ick factor went up the more I read about what else is in them.
I knew that bovine calf serum has been used in other vaccines, but I did not recognize the MDCK cell protein that was listed in the Flucelvax flu shot. So I did a quick search. What I discovered was that it’s a cell protein from canine kidneys. I had to do another search when I saw that the fall armyworm was listed on the Flublok package insert. An armyworm? What is that, and what’s it doing in the flu shot? The armyworm is related to moths, caterpillars and butterflies. I love butterflies, but I certainly never imagined they or other insect cells would be part of the vaccine process. One more ingredient made me pause – porcine gelatin. Where have I heard porcine before? I then remembered something about the Rotateq vaccine and how it had caused serious injury to pediatric patients a while ago. That vaccine was contaminated from porcine DNA cirocoviruses, one of which can be lethal to pigs. I was taken aback when I saw that the recently reinstated nasal flu shot, FluMist listed porcine gelatin. Porcine circoviruses and porcine gelatin may be two different things, but what a potential gamble the industry is taking by offering this vaccine what that ingredient to the pediatric population again.
I knew it was coming. Even my kids knew. The in-your-face and the can’t-avoid-it flu shot season has once again descended upon us. Temperatures outside are still scorching, so those who typically associate the flu or the flu shot with the cold, winter months might be somewhat confused. But not us. As soon as we flipped to a new calendar page last week, there it all was. Right in our faces. The signs. The advertisements. The smiling pharmacists pushing their ever-failing wares on us. It’s all back. Did I miss it? Not in the least. I don’t think my kids did either.
I thought we’d go another few weeks without talking about it here at home, but one of my children shared that some friends were already talking about flu shots, too.
“I got mine today.”
“I’m getting mine soon.”
“I’ll probably get one later.”
Not that they’re promoting getting a vaccine that contributed to their brother’s poor health, but my kids have quietly told me that when hear these sorts of conversations among their peers, they want to say, “You can have mine while you’re at it. I’m NOT getting one.”
Ronan’s younger sister has strong feelings about vaccines, especially the flu shot. “Mom, I wished it had never been made.” She was born after Ronan fell ill and has grown up watching him fall further and further behind her developmentally. Post flu shot, and post other vaccinations received, she knows that things changed for him. And not for the better.
As frustrated as she and Ronan’s other siblings can get when they hear the ridiculous flu shot advertisements, I’m grateful that my kids are becoming braver in talking about them and about what happened to Ronan. They’ve witnessed firsthand the long-term negative reactions that vaccines can cause. They’ll be the first to tell you that they’re no picnic! My daughter knows that she’s been blessed with better health, but she feels for her brother. His health was compromised by something that was “going to protect him”. The shots he received did nothing of the sort. So it’s no surprise that Ronan’s little sister gets a little sad thinking about what could have been.
Best of! We all need a day off (Google it) from time to time!
By Cathy Jameson
While I was taking an introductory college course on the history of education, segregation and discrimination came up. We spent several classes discussing those topics and what role they played in the school setting. As the discussions intensified, the phrase “color blind vs. color conscious” entered the conversation. Color conscious focused on a person’s skin color while color blind did not. Toward the end of the semester, after many lengthy discussions and debates, including ones about how to treat and teach students in special education programs, one of our assignments was to answer the question, “What type of educator will you be, one who is color blind or color conscious?”
I took the position that being “color blind” had more benefits than being “color conscious”. Color blind allowed me to see my students as people first, then see their ability, disability or physical features second. Being color conscious may be needed in some situations in the classroom, but overall, using that outlook exclusively could draw unnecessary or negative attention to an attribute that has no bearing on a person as a whole.
I don’t remember what grade I received on that assignment, but for years, I’ve acted as “color blind” as possible. I see that my children have as well…
As Ronan’s abilities turned into disabilities, we were drawn to other families in similar situations. The more time we spent together with these families, we went from seeking their advice to making play dates with them. We eventually faded out the meet ups we’d been scheduling with typical families as we discovered more common ground with our new friends. My typical kids never complained about not being able to play with the typical friends we used to see. They were happy playing with everyone they met. This included their new friends, many of whom had special needs.
In the beginning, my kids would tread lightly at an initial get together with other special needs families. It wasn’t because they were nervous about the child they’d encounter because we never mentioned that they had differences; they were nervous because the setting was unfamiliar. Once they knew the rules of the house, and were told what they could and could not do, my kids jumped right in and played.
The host family’s child, who usually had similar issues as Ronan, was invited to join their play. While it was sometimes quite obvious that child had many delays, my children only saw the child. On some occasions, my kids were successful in getting everyone to play together. Other times they were not. They never let on that they were disappointed when it didn’t work out. They would try next time for everyone to be included.
My kids didn’t think to differentiate between who was able and who was not in those attempts to involve everyone. Many times they never realized that their friend had a diagnosis which could limit their involvement. Friends were friends no matter their color, ability, disability or level of development. Over time, my typical children have gained knowledge of why some children do things differently. With that knowledge they’ve learned a valuable life lesson: to treat people with compassion no matter who they are and no matter what they can and cannot do.
I’m more excited than my kids are about the start of a brand new school year. Don’t get me wrong, spending the last few weeks with my children has been good. Their long summer days, our late morning wake-ups, the outings we’ve gotten to do both in and out of town have kept our spirits high. But it’s time we get back into a good routine again. That routine will include school and some extracurricular activities like the kids’ sporting events. Usually the highlight of my day, I love to go to their games. Ronan isn’t always a big fan, but I try to get to as many events as he can handle.
While he and I join the rest of the fans courtside or at the field, we’re usually approached by several friendly faces. Mostly close friends who know our story intimately, we get to see a few other folks regularly while we’re out as well. I’m grateful for when they nod or offer a polite hello as we walk by, but I can tell that they aren’t sure what to say or do when they see Ronan. Not wanting to make them any more uncomfortable than they already seem, I thought of a few things they, and others in similar situations, might want to try when they see us next.
Wave. Ronan knows how to wave back.
Say hi. A quick, simple hello does wonders to my soul.
Ask. Ask how I’m doing. Ask how Ronan is doing.
Listen. I’m a stay-at-home mom. Some days, you may be the first adult I’ve gotten to talk to all day. I miss adult interaction, so I apologize in advance if I get a little too Chatty Cathy with you. J
Be you. We’ve obviously crossed paths for a reason. Keep that connection going by telling me something happy or hopeful that’s happened to you. When you’re done catching up with me, talk to Ronan. You know he can’t reply, but simply acknowledging what he’s doing is nice. Tell him something like – You must really enjoy that game on your iPad, Ronan. Look how well you’re doing! Or note what he’s eating – What a fun snack you’ve got there! Or pay him a compliment like you would any other kid – You’re doing a great job watching your sister play! She must love seeing you here at her game.
Those remarks will not be lost on Ronan. He hears you. He sees you. He knows when people are being genuine and when they are not. When you shower him with kindness, you shower all of us with kindness. So, spread that love around! I’m not saying you have to do it all the time, but one happy hello or one quick wave in his and my general direction really does go a long way. Plus, if your children are close by and see you being positively in tune with us, they’ll pick up on what to do next time they run into us at other sporting events or at future school activities.
This time of year while many families are getting ready for a new school year, I’ve been seeing lots of lists being shared. They’ve included simple Back-to-School Supply lists, the very important How to Prepare for an IEP Meeting lists, and several tried and true Easy 30-minute Meals lists. Since we’re still in hurricane season here on the east coast, I saw another one a few days ago that caught my eye. It was an Are You Ready to Weather the Storm? list. With how busy our week’s been, to include some medical issues that I hadn’t anticipated, that last list about weathering through the storm got me thinking. You know what that means. It means that I had to write about it!
Weathering the storm. Some days, what we are going through feels exactly like a storm. We experience the calm. Things are great. But then, there’s a subtle change. An odd behavior. A breeze picks up. There it is again. Electricity’s in the air and the sound of rolling thunder can be heard off in the distance. A meltdown…why? Something is brewing and could hit close to home. He was so happy earlier. What happened? We prepare ourselves for the inevitable–rain, wind, lightning, and more. Crud. A seizure. Some storms are quick and leave hardly a trace beyond rain-soaked streets. Other storms leave a path of destruction in its wake. Kids, we need to tiptoe again today...
Since we as a family are doing this life with autism thing together, I thought I’d ask my kids for some help with today’s post. They tend to bring me exactly what I need after a full week like the one I had – they shower me with a dose of hope. They do that by telling me things that I (and we) can do next time. What do we want to do for next time? Sometimes it’s something different, or something better, or something new that we haven’t tried yet. So, this week, after getting some quiet time with Ronan’s little sister late on Friday night, Izzy and I chatted about how busy we’ve been and also how very focused we’ve needed to be. Here are her thoughts.
When the seizures come: First, we see what kind of seizure it is. If we see that it’s a photic-driven seizure, like the ones Ronan’s had while we we’re driving, we try to cover his eyes as soon as we realize it’s the lights triggering them. We help him stay calm, we do his countdown, and we keep track of how long seizure was. Remember when we went through those tunnels on our vacation? We knew he could have a seizure, so we made sure ahead of time to protect him. We knew to pay attention for when we went back through the tunnel on our way home also. For afterwards, when it’s over, we pray, we comfort, we help, and we hope that that seizure was the last one.
When communication attempts fail: When that happens, it might be that he’s hurt and he needs help but doesn’t know how to ask. It could also be that something he doesn’t like is near him, but he can’t tell us to take it away or move it. We look up the sign to try to figure out what he’s saying or we use environment to tell us what could be bugging him. What might have scared him? What did he hear or what is on him (clothing or shoes) that is irritating him? Then we do our best to remember that he might not like to see or hear or touch that thing in the future so we keep it away from him.
For years, Ronan’s siblings have been praying for a miracle. On any given day, they share one of a few consistent requests during our family’s evening prayer time. They ask God for Ronan to be able to speak again. They mercifully beg for the seizures to stop. They ask for his full healing. I pray along with them, but sometimes it’s hard for me to “offer it up”. The times it’s the hardest is after Ronan’s had a tough day or after he’s had seizures. Those days, one of the sibs laments, “Mom, we’ve prayed a lot and for a long time. Why haven’t our prayers been answered?” I tell them what’s been told to me – sometimes a prayer is answered with a yes. Sometimes the answer is no. Other times, the answer is yes….but not right now.
I was reminded of those three different answers when I stated one of them earlier this week. It wasn’t about Ronan’s miracle his siblings are still waiting for; it was about a topic that has spurred the desire for that miracle – vaccines. It was a short conversation with a nurse but one worth noting:
Has he had a flu shot? Nope. You don't do those, right? Yep. Okay.
Easily, the nurse who was asking me that simple question could’ve taken it upon herself to lecture me. She could’ve belittled me as others have attempted to do before. She could’ve also loaded me up with industry propaganda about how “safe and effective” the flu shot is even though the HHS has neglected to study vaccines for the last 30 years as they had been charged to do. I’d have been more than ready to defend myself and my answer in why we “don’t do those” had she persisted, but I didn’t have to. The nurse kept things simple and civil. That’s because she, unlike other medical professionals we’ve encountered, respected the answer that I provided to her.
I was so excited about how the conversation went that as soon as I could, I told Ronan’s siblings about it. They were as grateful as I was. In thinking about how that appointment could’ve played out, I was reminded of the three answers we may get when we ask for prayers:
-Some people give a yes answer to any and all vaccines. That’s their right.
-Some offer a no, nope, or never to one or to all vaccines in reply. That should be everyone’s right, but we know that some people in some states are no longer given that option.
-Other people would like some time to mull things over and respond with not right now because there is so much to learn about disease, about the immune system, about vaccines, and about the law. Taking time and delaying, or eventually forgoing, one or all vaccines being offered should be allowed. But, again, some places have restricted vaccine choice.
We had the chance to go on a day-trip last week to meet friends at the beach. It would be a lot of work to pull it off, but I reveled in the thought of being spontaneous. I thrive by the ocean. Ronan usually does, too, so when we got the opportunity to go to it again this summer, I rearranged what we could, cancelled what couldn’t be rearranged and then got the heck out of town for the day.
We’ve dropped everything before, but that’s usually because something unfortunate has happened – a rash of seizures, an epic meltdown, a sensory overload. The kids are used to hearing me make plans and then immediately break those plans, but they’ve never taken out their disappointment of missing out on something on their brother. Even though it’s usually because of him that plans have changed, they understand that life with a sibling with autism doesn’t always go as they expect it to. They get that, and they know that sometimes they have to just go with the flow. I prayed that Ronan would get that this time – sometimes plans change. I also prayed that our unexpected road trip would go smoothly.
It did. Until the siblings changed their minds.
Right before we got to our destination, Ronan’s brother and sisters decided they’d rather go to a pool instead of the beach. Going to the pool had been an option when we learned of the opportunity to get away, but I had my heart set on the ocean. I wanted so badly to go there. Ronan said he did also when I asked him if he wanted to go swimming at the beach like we got to earlier this summer. He signed, “Yes swim water fish.”
Ronan sits seaside during the family’s vacation earlier in June.
The breeze, the sand, the waves – I wanted…no, needed it! I wanted to see it, to feel it, and to be surrounded by that salty air again. That’s what I told Ronan he would see and smell and feel, too. The beach. That’s what we talked about on the ride. That’s what kept him focused and also what kept him distracted after I realized I’d left one of his movies and the iPad on the couch after we’d gotten on the road. He’d done great so far to pass the time, but here we were close to where I told him we’d be going. Do I turn right toward the beach that I’d described in detail, or do I reroute us and turn left toward the pool he hadn’t been to in years?
As your body grows bigger Your mind must flower It's great to learn 'Cause knowledge is power It's Schoolhouse Rocky, the chip off the block Of your favorite schoolhouse, Schoolhouse Rock!
By Cathy Jameson
Back to school. I love this time of year. New supplies and new academic adventures await. My kids are somewhat excited to return to school but more so for the social aspect. They cannot wait to see their friends again. Friends are a good thing to have in life. I’m grateful for the ones I have, especially for the friends I’ve made online.
I belong to a lot more parenting groups now than I did when my children were younger. The people in these groups, many who have become personal friends, are a lifeline for me. From the old timers to the youngins’, many of whom are more in tune with their parental rights than I ever was at their age, we have a safe place to talk, vent, and collaborate. From poop talk to getting the skinny on who’s an autism friendly doctor or therapist, I’m drawn in to several conversations throughout the year. Since the start of school is right around the corner, some of the latest convos have been about school shots.
I’m seeing talk about shots in several groups that are medical- or vaccine-related and in typical parenting groups, too. People are asking if it’s true that their child must be vaccinated. I heard they don’t have to be but my district just sent me a notice. If I don’t get her the vaccine, she won’t get her schedule. Most who’ve chimed in to answer know quite a bit about vaccine law and about their rights. But, since not every member of the group is vaccine savvy yet, they’re gently reminding the newer folks that what some of the schools and health departments are saying about school shots is misleading. Once that newbie parent is provided the accurate information, that yes, their child can still go to school without getting that Tdap vaccine or that booster, some of the parents band together to set the district straight.
Guys! XYZ district is saying that shots are required for school entry. Shall we go school them? Photo credit: Google Images
Being mom to five is fun but can be tiring. These kids of mine love to sign up for things – sports, clubs, afterschool activities. I look forward to the summer months where I can take a break from their busy schedules. This time of year, we scale back on things because we can. That includes me, too. I take time away from activities that I do during our family’s busier months, including some of the reading I do about vaccines, about autism, and about special needs parenting. I need a break from some of that like the kids need a break from school.
As much as I sometimes think I’ll remove myself from all things advocacy, I don’t think I could ever fully rest from it. I’m constantly reminded of what vaccines did and also what they took away. I’ve tried, but to walk away completely just isn’t an option. Wouldn’t I rather just put my feet up and stop the madness for a minute or two. Sure! But if I stop, who’ll pick up where I left off? Some of my friends and family will (thank you!), but how long will they last? They know a lot about Ronan, but they won’t know everything there is to know until they step in my shoes 24/7/365.
I pray I never have to ask anyone to be me each and every day for all of my kids. But if I do, I’d want that someone to also pick up the advocating that moms like me do. Would my family be able to do that? Those closest to us most likely would. Would my friends? I think so, but I know not everyone shares the same thoughts and opinions as I do about certain topics. That doesn’t stop us from being friend, but it has limited some topics of conversation in the past.
I was thinking about how some topics are better left “off topic” when I saw Robert F. Kennedy, Jr. and Del Bigtree’s recent announcement. If you’re part of the vaccine-autism community, you’ve probably already heard all about it. For those who are not part of this community but who’d like a quick rundown of what that document states, hold onto your seats.
What it comes down to is this: Much of what you’ve been told about vaccines is a lie, and everything parents of vaccine-injured children have informed you of or reminded you about vaccines is true.
From the ICAN (Informed Consent Action Network):
…since 1986, HHS has had the primary and virtually sole responsibility to make and assure improvements in the licensing, manufacturing, adverse reaction reporting, research, safety and efficacy testing of vaccines in order to reduce the risk of adverse vaccine reactions. In order to assure HHS meets its vaccine safety obligations, Congress required as part of the 1986 Act that the Secretary of HHS submit a biennial reports to Congress detailing the improvements in vaccine safety made by HHS in the preceding two years. “The result of the lawsuit is that HHS had to finally and shockingly admit that it never, not even once, submitted a single biennial report to Congress detailing the improvements in vaccine safety.”
Basically, your government does not have your best interest in mind when it comes to vaccines, and it hasn’t for a long time now.
If this news shocks you like it shocked me, fear not! Something can be done about it. I was made aware of a call to action that anyone can submit through the Autism Action Network. Send in a comment today, then share the link with 10 people. It shouldn’t hurt to hear straight from the horse’s mouth, which is why I’m also encouraging friends who still believe and trust in their country’s vaccine program to ask for some clarification of this discovery. Who knows? When friends get a reply, maybe future conversations about vaccine safety will be a little bit different.
People warned me that the years go by quickly. Boy, were they right! Time really is flying by. I’m reminded of that when Ronan’s big sister checks out a new college. Fiona’s been checking out colleges for about a year now. She hasn’t narrowed which course of study she’ll major in yet, but she’s definitely interested in careers in the science and/or medical fields. With how much her brother has been immersed in all things medical, I’m not surprised that she’d want to pursue that sort of path. I’m actually very excited about that, especially when I remembered one of my facebook statuses from several years ago.
Let it be known across the land: there is no crying at math today!!! Yay, Fiona for building that confidence.
At that time, Fiona, who always liked school, hit a road block. She always excelled in Reading, Writing, History, and Science, but she was just not grasping Math concepts. The more she tried and failed, that road block became a big, fat stop sign. She wasn’t just not grasping the concepts, she didn’t care to do Math at all. It was just too hard. Half-way through middle school, though, she realized that by the time she got to high school, she’d be a year behind where many of her peers were. She wanted to love Math like she loved other subjects, like Science, but there were more tears than high fives after each lesson. When she began talking about going into the medical field as a pre-teen, I cautiously reminded Fiona that she might want to reconsider – Math and Science go together. Did she realize that?
But that wasn’t going to stop her. That girl, who’s always been one determined kiddo, finally got herself exactly where she wanted to be. It took a while, but she was able to do that by requesting tutoring, by asking her teachers for help afterschool, and by asking us to enroll her in a self-paced year-long Algebra II class (which she successfully completed in 9 weeks’ time) to catch her up with her peers. Where is Fiona now? She’s prepping for and cannot wait to take an AP Calculus class this fall.
What an accomplishment!
Last week, while talking to a college admissions counselor, I asked Fiona what sort of questions she was asked. Now finally able to say she’s “on track” for some pre-Med programs she’s been eyeing, she said she was able to share her goals, dreams, and future career interests with the college rep.
She added, “Oh, and I talked about Ronan, too.”
My heart swelled, “You did? Tell me about it.”
Fiona started, “Well, it began with me talking about my interests, like volleyball and photography, and then answering some typical interview questions: what are my short-term goals, what are my long-term goals, what are my academic achievements… Those kinds of questions.”
“And how did Ronan come up?” I asked her.
“Remember you gave me some pointers before I went in, tell them I’m the oldest of five and that I have a brother with autism,” Fiona reminded me.
“Yeah, I’ve read that sharing that sort of information has been helpful for some other autism siblings who are a few years ahead of you,” I told her.
Wandering is a heart-stopping, life-threatening dangerous reality for many families, mine included. I haven’t written about wandering in quite a while. That’s because it’s been a long time since Ronan has attempted to wander. Until last week.
Last week, even with precautions in place, Ronan tried and successfully made it half-way up the driveway by himself. We’ve been vigilant for so long, but there he went out the door undetected. What can a caregiver do?
Suggestions we’ve been given include getting window wedges and door locks, investing in a tracking device, and creating a tag-you’re-it arrangement as one caregiver takes over for another. At one time or another, we’ve benefited from all of those suggestions. Last week, though, it was my turn to keep an eye on things. Instead of double checking the door or tagging one of the kids like we’ve been doing for years now, I walked away without asking someone to help keep tabs on Ronan. I didn’t think to do that because Fiona was outside and the reason the door had remained unlocked. She’s right there. She’ll see him, I thought, so I didn’t yell to her like I should have, and like I usually would do, “Hey, Daddy needs my help. Keep an eye on your brother for me, okay?”
Ronan’s sister was outside, but she was dropping something off to a neighbor. When Ronan walked out, she didn’t see him. She didn’t hear him. No one heard him. No one saw him. It was a quick trip for Fiona, thankfully, and she was already walking back toward the house when she spied her brother. Keeping upbeat, she gently redirected him back indoors with her. He returned without incident and got settled back into an activity. Once her heart rate went back to normal, Fiona chastised me. I told her that she had ever right to.
We’ve been practicing keeping the front door unlocked and opened since the weather got nice. If we don’t teach Ronan how to walk past the wide-opened door that leads to the wide-opened world out there, we’ll all live in fear. Living in fear is unhealthy. So, it’s been baby steps – one day the front door stayed open just enough to let a sliver of light in. The next week, we opened it a bit more. We did this for weeks opening the door little by little until it was fully ajar. Over time, we did this not just for a few minutes a day but all day long. Having a locking glass/screen door at that entrance helped create this teaching opportunity. But the side door, the door that Ronan recently slipped through, has no screen door. Once it’s opened, it’s Hello, real world!
Even though that side door has bells on it, if no one hears them Ronan can easily step out and wander away. He could easily have done that while we were on vacation last week as well.
While away on vacation, we had to beef up our “security” efforts. We were staying in a new place. I’d been there once before and had an idea of the layout of the house, but it was unfamiliar to Ronan. He was naturally curious about everything – the TV, the bedroom, the refrigerator – including the front door which was his exit out of there.
We got to sneak away last week. We'd planned to do some day trips already and were going to stay somewhat local for a few days, but a friend's generosity opened up an opportunity for us to go home for a week. Going home, even if only for a short while, is always a blessing. So when we got that chance, we rerouted ourselves and headed north instead.
While packing our bags and making sure all of Ronan's things were ready - meds, extra clothes and water-proof bedding items, his favorite book and picture, I recalled previous trips back to my favorite City by the Sea. Like last year and years before, I envisioned we'd enjoy the sun, the beaches, the food, the parks, and the company we'd get to keep. Happily, we got to do all of that! But we also faced some new challenges while traveling and while we were in town. The hardest one was when Ronan, who had done a remarkable job while we were out one evening, signed that he was all done and that he wanted to go home.
Home. Home. Home.
It took some convincing for Ronan to get out of the car that night and to come into the house where we were staying, but I felt a twinge of sadness come over me when I saw that Ronan had reached his limit. To me, this was home. Years ago, it’s where I lived, worked, made friends, and met and married my husband. I’ve made so many memories here, and it's where we hope to come back to someday, too. In my mind, even though lots of time has passed, this place still is home. But for Ronan, coming back is hard. It's a huge change in scenery, routine, and comfort zone.
Several years ago, Ronan’s brother stepped on a nail. It wasn’t a rusty nail, but it did pierce his skin. While playing in the back yard, he and a neighbor crossed an old wooden board that spanned over a trench that separated our yard from an undeveloped lot of land. As he crossed the board, the nail, which was sticking straight up, went right though Willem’s shoe. While quite painful, he made his way across the yard and into the house with no assistance. Even so, I knew to be careful when removing his shoe and sock so as not to further disturb the wound. Once his foot was exposed, I immediately inspected where the nail punctured his skin and observed. Blood began to ooze out which I took as a good sign. At no time did I panic or think I needed to run him to the E.R. That would’ve be fruitless anyway.
Knowing the typical protocol for that kind of injury, if my son had been exposed to tetanus, E.R. staff wouldn’t proceed with giving the TiG (tetanus immunoglobulin) first or maybe even at all. They would’ve offered to clean the wound, which I could do myself, and would give him a tetanus shot, which he didn’t need (and which, as far as I’m aware, is never a stand-alone shot—it’s adminstered as the Td, DTaP, or Tdap). Regardless, the kids were vaccinated on schedule. That meant that Willem had gone through the tetanus series and wasn’t “due” for one. At the time, vaccine logic told me that if he had been exposed and if that vaccine series did what doctors claim it does, which is to provide protection from the tetanus bacteria, he’d be fine. He’d had several of those shots already. I was reminded of that fact earlier this week.
At a clinic with Willem for a physical, the nurse, who looked to be in her late 30s-early 40s, could not wrap her head around the fact that a stretch of time had passed since those vaccinations had been administered. Getting ready to put the cuff on Willem’s arm to get a blood pressure reading, the nurse kept going back to one of the pages I’d filled out before we arrived. She’d look at the page, glance at me quizzically, and then look back at the page again. She finally spoke up.
“Are you sure you have the right date?”
Looking her straight in the eye, I confidently replied, “Yes.”
Skipping to the next section, she paused. Then she went back to that other page.
Oh, boy. Here we go, I thought.
Willem must have thought the same thing. He looked at me knowing things could go one of two ways – our way, or her way. He smiled a very nervous smile at me. I quietly whispered, “I’ve got this,” and smiled back at him.
Turning her head toward me, the nurse looked at me strangely again, “But it says here…”
Before she could finish, I politely interrupted her and said, “Yes, that date is correct.” Then, I attempted to get her back on track.
“So, he’s here for a sports physical. He’s a pretty active kid. Eats well, loves to play outside… rides his bike, enjoys football, frisbee, and soccer…he’s doing well in school, has a great appetite, and he’s grown.”
Unsatisfied with my response, I quickly added, “There’s been no change in his health since his last physical.” There. That should get her attention back to where it should be.
She was not having it.
In her broken English, she stammered, “But this date, it’s….”
While there is one question about one vaccine on this particular form, vaccines are not a requirement for why we were at the clinic that day. The nurse, who over time must see thousands of patients requesting this exam, should know that. But I ended up being the one to educate her. Just like I had to several years ago with another young medical professional who grew up outside of the United States. Relying on third-world facts and fear tactics, he, too, tried to change my mind about vaccines. After a lengthy convo, he respectfully came around. But this gal didn’t seem to want to budge. She’d need a longer lesson on knowing when to stop badgering a parent who obviously knew more about vaccines and parents’ rights than she did.
Forced to speak my mind once again, I firmly said, “We’re here for the physical, so…thanks for asking about the tetanus, but he’s all set.”
She’d been quite pleasant when we’d walked in, but the nurse’s tone had clearly changed. Not entirely pleased with how pointed I had become, she jotted something down on the intake paper. She’d written down Willem’s height and weight on it already and was about to write down his blood pressure and heart rate, too. I didn’t see what she scribbled, but I’m sure it wasn’t a positive comment. That didn’t phase me. It wouldn’t be the first time someone’s attitude about me changed once they got to know the real me.
Still in disagreement, the nurse finished her part of the appointment and left the room. Leaving quieter than when she walked in, I stuck to my guns and waited patiently for the doctor to come in. With gusto, and all smiles not just toward my kids but toward me as well, he welcomed us with open arms. And within 10 minutes, we got what we came in for and left without incident.
"To promote the right to individual health choice and stand up for the victims of medical injury."
I scheduled my typical children’s dental appointments over their summer vacation. Sitting in a dentist’s office for two and a half hours on a sunny afternoon wasn’t on my top 10 things to do while on summer vacation list. Neither was defending medical choices I’m forced to make for my kids. But that’s what ended up happening on a hot July day.
I shouldn’t joke. Taking four children to our dental provider really isn’t that difficult; it’s more time consuming than anything. After a terrible experience with another dental group in town, I’m grateful that our current dentist knows us well. The staff listens to me. They respect me. They understand why I’ve made the medical decisions I’ve made for my children. It’s comforting that they recognize that some of my kids are medically fragile. What’s considered “industry standard” by some can send my children into a downward spiral with potentially long-lasting ill effects.
So, smack dab in the middle of summer vacation was just as good a day as any to bring my kids in for a teeth cleaning. I was prepared for the long afternoon and made sure to bring things for my kids to do while their siblings’ teeth were checked. Just when I thought it would be business as usual, a new dental hygienist greeted us in the waiting room. I wasn’t aware that the one whom I’d made a great connection with (she too had a young child with developmental delays) had recently left the practice.
Politely introducing myself and my two older children whom she’d be working with, I felt somewhat exposed talking to the new hygienist. Stating pertinent health and medical issues my children had, I went through a list of things we usually request.
I saw one of the sweetest videos a little over a week ago. You may have seen it, too. A dad jumped on stage to help his young ballerina daughter. Plagued with stage fright, she was in a tough spot. Dad realized that and came to save the day. Holding a baby in his arms, he not only leaped to his daughter’s rescue, he leapt with the other ballerinas during their recital performance, too. It truly was one of the sweetest moments I’ve seen go viral.
Other dads are pretty awesome, too, including Dave, Izzy, and a lot of the dads who contribute to conversations here on Age of Autism. Knee-deep in the thick of things, I can feel the love they have for their child through their responses and shared stories. But some of the dads here won’t get the sort of international attention like that wonderful Ballerina Dad got.
Even without the accolades, the dads here step up. They do whatever it takes. They worked tirelessly – and will continue to do so – to keep their child happy, healthy, and safe. So, this Father’s Day weekend, I thought I’d tip my hat to some of the guys I’ve been inspired by here in the autism community and those beyond in other special needs circles.
Last week, I shared how Ronan’s youngest sister made the realization that she lives and performs many of the Corporal Works of Mercy right here in our home. Usually, those works of mercy are done outside the home, but after reading through an old coloring book that highlighted those simple acts of kindness, she saw a constant theme – do small things with great love. On a daily basis, she’s doing lots of things with tons of love for that brother of hers! Some of what she’s doing comes naturally and would be expected of any sibling, but with how disabled Ronan is, she goes a step further. She continuously and selflessly pitches in.
After reading through that section of the coloring book, I could reflect on what we’d read only for a few minutes. Thinking Ronan might be done listening, I had put the book down. Ronan wasn’t done though. He was glued to the review lesson and completely lost interest in watching the movie he’d just requested. So we kept turning pages. We kept reading. We kept talking about our faith. We kept sharing what it means to perform other works of mercy, the Spiritual Works of Mercy. It was utterly amazing.
One per page, we reviewed the 7 Spiritual Works of Mercy. We read about what it meant to Admonish the Sinner, to Instruct the Ignorant, to Counsel the Doubtful as well as how to Comfort the Sorrowful. Then, we read about how to Bear Wrongs Patiently and why we need to Forgive All Injuries. Finally, we went over the importance of Praying for the Living and the Dead. My daughter was beginning to get distracted, but those other 7 works of mercy hit me hard. It had been a while since I’d really studied them, and with Ronan sitting next to me, I couldn’t help but think about why we do the things we do—it’s because of what happened to him.
Admonish the Sinner –We do this when we speak out about someone who has done something wrong. I’ve done that more than a time or two right here on AofA! I’ve done that publicly by calling out politicians, the medical establishment, and the pharmaceutical industry. I do that privately when I have conversations with new parents about our family’s experience. Plenty of parents have joined me in keeping those conversations going. Until children are no longer harmed in the name of Science or sacrificed for the greater good, we need to keep those important convos going.
I was sitting on the couch with Ronan a few nights ago when he signed a request. He wanted to watch a movie. I told him yes, but before I turned the television on, I brought over some of my old school supplies. Since it was late in the day, I knew that Ronan’s attention span wouldn’t be too long. Regardless, we needed to do some reviewing of skills I’ve been working on with him. That meant a quick peek at the world map, practicing some cursive letter writing, reading through some math flash cards, and catching up on some reading comprehension. For reading, I picked out an old coloring book I’d used as a resource back when I taught at a small Catholic School. Even though almost 2 decades has passed since I first stepped foot into a classroom, much of the material I’ve saved from those early teaching days is still relevant. That includes this particular coloring book.
The book covers basic Catholic doctrine for young children. Included are the 7 Corporal Works of Mercy. Simply put, these are small acts of love that we can do for others. We perform those acts of love when we: Feed the Hungry, Give Drink to the Thirsty, Clothe the Naked, Visit the Imprisoned, Shelter the Homeless, Visit the Sick, and Bury the Dead. As Ronan and I went over what these acts of kindness meant, Ronan’s youngest sister joined us in listing ways people help each other. While we talked, she realized that we don’t have to go too far to perform these acts. We do a lot of them for Ronan automatically.
Feed the Hungry
I remember having to switch out practically our entire pantry and refrigerator after learning that gluten and casein could do a number on kids like Ronan. I wasn’t thrilled thinking about not being able to use all that food—regular bread, crackers, waffles, oatmeal. All the cheese, cow’s milk, and yogurt. With each item tossed, I was utterly overwhelmed wondering what on earth I was going to feed a kid who loved to eat wheat and dairy. Staples my siblings and I grew up with - pizza, peanut butter and jelly sandwiches, and milk - were now off limits. While learning how to eliminate the foods that caused severe inflammation, I slowly replaced our family’s menu with safer, greener food options. At one point, we all switched to gluten-free. Soon after, like Ronan had to, we eased off the dairy. We did that for a few reasons, but the neatest one was so that we could eat in solidarity with Ronan. My typical kids can now have more “regular” foods than Ronan probably ever will, but they make sure to never taunt him about it. When they get special treats, like when a friend brought them Krispy Kreme donuts last weekend, they made sure he got something fun and yummy, but safe for his tummy, too.
Give Drink to the Thirsty
Removing milk was one of the most traumatic acts for both me and my children. In those early days when I knew far less than I do now, I had no idea that dairy could cause major bowel issues. The more I learned, the more I made a connection that Ronan was severely affected by dairy products, including milk. (His siblings were affected, too, but to a lesser degree.) I found replacements, as I know many other parents have had to, but getting Ronan to drink something other than milk took some time. Once he did, though, his bowel issues weren’t as explosive. Brain fog had lifted, too. Now, when Ronan’s thirsty, he signs for juice. The juice is watered down quite a bit to the point of it being more water than juice, but what’s even more exciting is that after some regression, he can use a regular cup like his siblings do. He hasn’t mastered that skill completely yet, but he has come so far and with the encouragement from his brother and sisters.
Note: Memorial Day weekend kicks off the start of summer here in America. Here's a best of from Cathy, who has a well deserved weekend "off."
By Cathy Jameson
We started talking about taking a summer family vacation several months ago. With as many needs as one of my children has, with my husband’s job demands being as intense as they are, and with autism reality sneaking in and breaking all of our best laid plans, it’s a good thing that we took that long to plan our getaway.
Our plans changed two weeks before we were to leave. They changed again one week before we were to leave. They changed as we hit the road last weekend, too. We normally don’t tell our typical kids that we’re leaving on grand adventures until right before we go, but I’m glad that we gave them a heads up this time. If there’s one thing that autism has taught me and Ronan’s siblings, it’s that we have to be flexible. If we were going to make this vacation work, we’d all have to be flexible - Ronan included.
Ronan likes his routine. He likes to know where his favorite books, blankies, and Wii discs are. He also likes to know where Daddy is also. If something’s out of place, he may get a little out of sorts. That could include taking longer to finish a task. It could mean he refuses to comply with a simple request. If something is really bothering him, it could bring on some negative behavior. Things were going fairly well for Ronan on the first day of our vacation. They were going okay on the second day was well. But on the third day, the day we had to drop my husband off at the airport to attend to some business that couldn’t wait until this week, that day threw Ronan over the edge. That night, after a long day of signing Daddy Daddy Daddy Daddy Daddy, Ronan refused to go to sleep. That’s not entirely unusual. Ronan will have sleepless night at home, but he was hundreds of miles from the comfort of home, his routine, and now Daddy, too. Things were getting a little more stressful for Ronan. There were getting a lot more stressful for me. If we were going to survive the next 3 days before my husband returned, I knew that I needed to make a change. That would include changing my attitude.
We were staying at a friend’s house and sharing a bedroom with the siblings. If Ronan didn’t sleep, it was likely that the rest of us wouldn’t sleep either. I’m usually a “cup is half-full” kind of person, but being this far from home with an irate, non-verbal child who stayed wide awake until 3am was turning me into a gloomy Gus. Add being jarred awake at 4am after Ronan fell out of the bed he and I were sharing, and I was pretty much done with our family vacation. Add in some odd seizure activity the next day, and I was visualizing myself hauling back down the highway heading for home. As easily as it was to call it quits right then and there, I’m glad that I didn’t.
As he usually does at home, Ronan bounced back.
The next day, Ronan was not ready to explore town like the rest of us were, so the friend whom we were staying with offered to watch Ronan for me. It’s been a year since she’s seen us, so I was hesitant to leave Ronan with her. But my friends, especially the ones who’ve become more like family to me, are very quick to tell me, Go. You need a break. I’m here and can handle whatever needs to be handled. Ronan will be fine. I’ll be fine, now go.
In our ever-growing world where the science can never be settled, we need passionate and dedicated scientists. Scientists are known to spend a great deal of time studying and learning from the natural world around us. Their discoveries are based on their observations and experimentation and then presented for others to see. Data is important, but one thing I sometimes see being forgotten in the field is recognition of the actual human being who has contributed to scientific findings and statistics. I was reminded of that after catching up on reading a few studies last week. One in particular, which was about using social media to help parents understand and improve their attitudes about vaccines, brought me right back to the time when I began to question vaccines, my doctor, and Science.
Before I had kids, and even after having them, I would never have said that I had an attitude about vaccines. Back then, I honestly never thought too long about them. I just knew I wanted them without any sort of hesitation. But, after observing my son fall ill post-vaccination, I started having doubts. As I began to question them, I realized that I didn’t have enough information beyond what the doctor was telling me. Since she only offered positive vaccine thoughts and a very strong opinion supporting them, I set out to find the facts I wanted and needed. Like parents today who also have questions, I had to learn how to look for unbiased information. I had to learn how to discern what I heard from other people. Putting emotions aside, I had to learn how to weigh what I was being told by the pediatrician and also factor in what my gut was telling me. She said that they were necessary and would help my children be healthier. But after seeing reactions while also learning that they were not required for school entry, I really wasn’t sure what I was being told about vaccines was completely true. As she kept pushing them despite the problems Ronan was having, I became one of those parents who was “on the fence” about vaccines. I needed more help. But from where?
I needed rock-solid Science. Surely, that could help me.
As a child, I never liked Science. I didn’t hate it, I just didn’t appreciate it. The sicker Ronan became, though, I was drawn toward it. Spending countless hours at the library (think pre-internet days) and finding myself spending the most time searching for and reading books from the Science section, I was forced to learn more about topics I should’ve paid better attention to when I was in school. Being the parent of a chronically-ill child, I’ve had to rely on Science as well as people in the medical community in order to support my son and his intense needs. In the long run Science did help. So did keeping my son, and what he was dealing with, forefront in my mind.
In retrospect, that should’ve been proof enough. But my naiveté kept me from seeing reality. Plus, others, like our doctor, refused to see the human in front of them, too. Eventually, I knew that I couldn’t discount what was happening right in front of me. And when I discovered that other people elsewhere were reporting similar issues with their kids, I knew that I was onto something.
I hadn’t yet found those other people but soon would.
In those early days when I had gotten as far as library searches could take me, I began to use the internet. Unsure of how to navigate it like I can today, I wasn’t always confident in what to look for. Thankfully, I kept at it and explored all that I could. What a treasure trove of information! Even so, I wasn’t prepared for the rabbit hole I was about to walk into after a family member told me to check out something called a discussion board. Tip toeing into one, I was overwhelmed, but I was also glad to discover that other people were asking the very same questions about vaccines that I also was. Thank God for those early Yahoo! Group days.