Ronan was scheduled for a procedure last week that would require sedation in a clinical setting. Procedures, sedation, and medical clinics make Ronan nervous. All of that makes me nervous also. Some of my worries were put at ease though. The day before the appointment, a nurse called to give me a rundown on the procedure. I was grateful for the chance to hear ahead of time what was going to be expected of Ronan and of me. I was very happy that the pediatric critical care team knew much of Ronan’s past medical history, too. Their knowledge and understanding of his seizures, sensory issues, and his inability to communicate verbally put my mind at ease. So did quite a few statements the nurse made during out 30-minute phone call.
Besides writing down a few notes during the call so that I could share them with my husband prior to our trip to the clinic, they were such good and reassuring statements that I wrote a few of them down:
We understand the potential complications and that Ronan’s going to be nervous. We’ll meet Ronan where he is…that means we’ll work with what he can do and do that at his pace.
You know your child best, Mom. You know him better than I know him. If things get too overwhelming, or if he has tried and tried again but can’t go further, you’ll know when enough is enough and be able to tell us.
We follow the scope of practice, but we will need you to continue to advocate for him like you already do.
We’re working with him because he’s considered a critical care patient, but we’re here for you, the parent, too. We’ll proceed once Ronan, and you, are ready for us to.
I don’t want to make any promises that I can’t keep.
If I haven’t answered all of your questions, because you may think of some after we hang up, call or text us any time between now and your arrival tomorrow. No question is too difficult. If I or one of the nurses can’t answer it, we’ll find someone else who can.
Most of the questions I had before the nurse called were answered in that call. But she was right. After my husband and I reviewed the pre-op notes I’d taken, we discovered we did have a few concerns. None were too pressing that we couldn’t wait to ask the team when we were with face-to-face the next day. I had already been given Ronan hints that we would soon be going to see the doctor, so I took the info I’d written down and shared it with him. I didn’t know how much Ronan would understand, but I needed him to know the basics: tomorrow was the big day, he’d have to fast until after the procedure, he’d meet some new doctors and nurses, and that mommy and daddy would be right there with him the entire time. Ronan signed ‘yes yes’ and then did the Sign of the Cross. Anytime he hears the word doctor, he asks us to pray, In the name of the Father, and the Son, and the Holy Spirit…Amen.
When we gathered for family prayers later that evening, the siblings all prayed for Ronan and his big day at the hospital. We prayed for the medical people we’d encounter – that they’d have compassion, and we prayed for Ronan – that he would do well with all the poking and prodding we knew he’d be subjected to. Most of Ronan’s medical journey has included a lot of questions. Why this? Why that? Constant wondering, constant worrying and knowing that not every test or procedure will come with answers, just more questions, can be unsettling. So we also prayed for good test results, which could take a few weeks to receive, and that we’d get some useful answers from them.
True to their word, when we arrived the next day, the critical care team was ready for Ronan. They’d thought of even more accommodations for our son than the ones I’d mentioned he’d need while I was on the phone the day before—dimmed lights, the offer of warm blankets to keep Ronan warm in the chilly exam room, and use of an iPad to keep him happy. While getting Ronan settled, they also lowered their voices knowing full well that even though Ronan wears noise-cancelling headphones, he can hear everyone and everything going on around him. Respecting that he was already nervous, they did not want to be the cause of any more worry for him while talking to us about medication side-effects and potential risks associated with the procedure. They thought of more than others would’ve thought to have on hand. Extra effort was already offered, but even more would be required from the medical staff present once the procedure began.
Once all formalities and were complete, though, the team asked us to be the lead.
Us? Me? Ronan’s Dad?? I could’ve balked. I could’ve said, That’s not our job! You’re the nurse, the doctor, the resident, the medical tech, not me! Do what you’re supposed to, and let us follow your directions.
I never liked Pink Floyd until I was an adult. As a child, I thought their music was ‘old people music’. I apologize for being so naïve. I liked several other artists from the 1960s and 70s when they were very popular when I was younger, but it wasn’t until I was an adult myself that I grew to appreciate Pink Floyd. I don’t know if it’s the lyrics, the instruments, the vocals or a combination of all of that that finally drew them to me. When I hear a Pink Floyd song now, I am immediately mesmerized so much so that I tune everything else out to listen to what’s coming from my speakers. That happened to me when I heard Us and Them last week.
Us (us, us, us, us) and them (them, them, them, them) And after all we're only ordinary men Me And you (you, you, you) God only knows It's not what we would choose (choose, choose) to do (to do, to do)…
Maybe it’s because I’m older, but the lyrics of that song speaks volumes to me now. I’m sure being the mom to a medically-fragile child has something to do with it, too. I didn’t choose what happened to my child, but consequences from events that I allowed, that contributed to long-term medical problems, affected him poorly. Those consequences affected both of us, and may continue to, for the rest of our lives.
In the beginning, I thought I could live with the outcome of what happened to Ronan. He lost skills. He lost the ability to speak. Since he had them once before, I figured I’d just work to reverse the damage the vaccines caused and get him those skills back. Ronan was young. Time was on our side. It was just a few vaccines. Surely, recovery was a possibility. And I thought I was being naïve about my taste in rock bands…ha! Recovery is possible for some individuals, but it hasn’t happened for my child. It is a hope for our family, but I have yet to find full restoration for my son.
Before my son got sick, I would’ve consider the people we were to be assigned to work with me on an Us and Them level. In the early years, we saw plenty of specialists and spoke to countless medical people. But the more intense things got as I looked for help and for answers, Hey, doc, could it be the vaccines that caused this??, it became an Us versus Them situation. It still is that way when I approach certain people, and I know that other parents have faced similar experiences.
Us Parents fighting The Establishment.
Be it a doctor, a nurse, a school nurse, a therapist, a school administrator, a teacher, or lately, a politician or elected official, some people take pleasure in saying no to moms like me. It takes a lot of patience, time, knowledge, and emotion to raise a special needs child. As time goes by, one would hope that things might have gotten a little bit easier. For parents in our community, it seems like some parts of life are getting harder. We’re not just fighting for our kids’ medical needs and educational needs like in the early days. These days, we’re also fighting for our rights, including ones that have already been established. Instead of going forward with some people who sit in positions of power, it feels like we’re going backwards. Until Us vs. Them dissolves, I don’t think we’ll get a chance to make too much progress. I do believe that it could be better for both sides. But the fact that there are “sides” negates that possibility.
Us and Them.
Will we ever be able to go back to that? Complete harmony hasn’t always existed in the world, but could we find time to have civil discussions? To see eye-to-eye? To treat each other with respect? To set vaccine differences aside? To work together and put children first? With how politicized everything has become, to include vaccinations, I think we’re a long way off from any sort of Us and Them relationship. They aren’t willing to work with Us. And we’re not going to jeopardize our kids or their health for Them. We did that once already. It’s something I know many parents will never allow to happen again.
Us vs. Them.
…who'll deny it's what the fighting's all about? Out of the way It's a busy day I've got things on my mind…
Those lyrics.
That song.
When I heard it recently, I was once again mesmerized.
As I listened to one of my now favorite songs on the radio, I was whisked somewhere else and to some time else, where things were not so hard, where I never had to worry about expressing my convictions, when I never had to defend myself as much as I do today. I miss those days and pray they will return sometime soon.
Last week I shared that Ronan was getting a little bit sillier. It’s been a treat to see him interact more with his siblings and to joke with them. This week, the kids took the initiative with their brother. Instead of encouraging Ronan to pretend to fall over like he was doing last week, they asked him to really fall but this time into their arms.
Facing away from your partner, that type of fall is sometimes called a Trust Fall because you have to trust that the person behind you will catch you. The siblings practiced that carefully together to show Ronan that they’ll always be there when he falls, but Ronan hasn’t caught on how to relax, drop into their arms, and rise up again without assistance yet. With how much they’re practicing, he’ll get there. I’m sure of it. Until he does, I’ll continue to enjoy the carrying on and laughing that fills our house while the siblings help Ronan with all of the motor plan this activity entails.
Half-way through the second day’s attempts, I yelled out Nestea plunge! as one of Ronan’s little sisters stood in front of me and leaned back confidently into my arms. Ronan laughed. Do it again! she and his other sister asked. They knew the game would make Ronan squeal again, and they wanted Ronan to try playing it with them again, too. The more he sees them tackle a problem, they thought, the more confident he could become.
I know a little bit about that myself.
The more I learned to trust myself years ago, the better I became at advocating for my children. Back when I took everything at face value, instead of trusting my instinct which was nagging me to no end, I put my faith in a human who did not have my best interest. I thought she did. I honestly thought my son’s doctor’s goal was to keep my child healthy. His health was more compromised, though, the more I depended on that doctor. After I decided to stop listening to and trusting her, drastic changes had to be made. That's because drastic changes in my son's development had occurred the more vaccines she said he needed.
When I finally clued in to what was causing him problems, I no longer found myself in a Trust Fall relationship. It was more like a Trust Fail situation. I learned a lot about myself during that time and from other unfortunate experiences that followed. I also learned a lot about people, including whom to trust as well as whom I could not. I was fortunately able to pick myself up during that time and could also create better environment where my son would have the chance to thrive, not flounder.
I’m meeting more moms now who have been able to avoid circumstances that I was unable to as a younger mom. They've looked up loads more information than I ever thought to. They've vocalized more and much earlier to their providers than ever I knew to. I’m hearing that more couples are working together to preserve their parental rights, something that moms my generation seemed to take on solo. When I hear from these couples, I’m learning that it isn’t the vaccine and the questionable ingredients that they’re worried about. It’s the stripping of their rights that has them dismayed and speaking up.
A few years ago, I overheard something that didn’t sit well with me. A woman’s son needed some help. The boy, who was wheelchair bound, was positioned closest to his typically developing brother. Instead of asking her typical son to help his physically disabled brother, the lady got up, walked across the room and fixed what needed to be fixed. I didn’t know her that well, but I was puzzled at what just happened and asked, “Why didn’t you let his brother help? He was right there and could’ve picked up the book that dropped.” She said, “Oh, I could never ask him to help. I don’t want him ever to feel like his brother is a burden.”
A burden??
It’s his brother!
Sure brothers can be annoying at times, but they can be so much more than that, too. They can be a friend, a confidant, a teacher, a partner in playtime, and also a role model. It’s not always the typical brother who’s leading the way either; sometimes it’s the kid with a disability who is positively shaping the life of another. I imagined that the boy in the wheelchair could offer plenty of teachable moments and learning opportunities to those around him, including to his typical brother. I also imagined that much of that would’ve been natural learning opportunities as well. The boy in the wheelchair had severe mobility issues and for several years already. The typical brother only knew him to be disabled. They weren’t living apart. They lived in the same household. Surely, the typical boy could provide some assistance some of the time. Surely, the disabled brother, who also had speech issues, could’ve used his brother’s help on more than one occasion, too. I didn’t want to judge a fellow parent, let alone a special needs parent, but I just couldn’t understand why she wouldn’t let one son help the other. Limiting a sibling’s interactions, natural or otherwise, could be detrimental.
I looked over at my daughter who’d accompanied me. Smiling a sheepish smile at her, I thought, Dear Lord, I hope she didn’t hear that. Each of my kids do so much for their brother, and they are years younger than these two boys were. I’d be heartbroken if any of them thought Ronan was a burden.
Over the years because of that sibling encounter that I’d witnessed and because of what that mom said, I’ve been more mindful of how I ask my kids to help their brother.
Hey, I think Ronan needs help with the putting the Wii disc in. Can you see if he does?
Kids! I need a charger for Ronan. Who has one that he can borrow?
Guys, Ronan’s sleeping off some seizures – let’s go watch a movie in the other room while he rests. I’ll set up some snacks for you.
I don’t always preface a request or a demand courteously all the time. Sometimes, I just tell my children that they need to do something quickly, and I won’t sugarcoat my words when I tell them. That’s happened when we’ve tried to attend an event that Ronan’s not able to tolerate any longer or if their behavior has become undesirable.
Kids, we need to go. Now! Ronan’s not having it, and I’ve got to get him out of here.
Hey, I’m going to sit in the car with Ronan for the rest of the game. Tell one of the moms to text me when you’re done.
Guys! Quit arguing! The noise is making Ronan anxious.
I don’t always apologize to them when I’ve had to speak curtly. I will if we’ve had to abandon their plans because Ronan’s gotten too worked up. But if it’s typical sibling stuff – like arguing over which DVD to watch, then I don’t apologize. Typical sibling stuff happens. Typical stuff happens when a non-typical sibling is part of the mix, too. Ronan’s picking up on that, and it’s rather exciting to see.
Last week, Ronan joked with his sister. It wasn’t a knock-knock joke or anything that had a punch line, but Ronan walked half-way up a set of stairs and stopped. He looked at me, and he looked at his little sister. While looking at us is not unusual, the twinkle he had in his eye was. What was he up to? I asked Ronan what he was doing while encouraging him to continue to go up the stairs. He’s got motor-planning issues, and the last thing I needed was for him to tumble and hurt himself. His youngest sister fully understood that also. Seeing him freeze in the stairwell, and remembering that he’d had seizures while going up a set of stairs last month, she maneuvered herself behind him and asked him if he could keep going.
He could.
But Ronan stood his ground.
Until he lifted one foot off the step.
And turned toward me.
And smiled a sneaky sort of smile.
Holding onto the railing, Ronan pretended go let go of the railing. Then he leaned backwards. Then he laughed. Is he pretending to fall down the stairs? Oh, my goodness, he is!
Wherever we lived when I was a child, we had a flag. At one house, where we had a flagpole in our front yard, one of us kids had the job of raising the flag each morning. Some days it was a chore for me because I didn’t give myself enough time to raise it as slowly or respectfully as I should’ve. But as a military brat, it truly was an honor to fly the flag. Years later, when I was off on my own, I learned about Flag Day, a day when Americans can take a moment to honor Old Glory and what it stands for. A proud American, I’ve always looked forward to June 14th.
I always remember one of my students on this day, too. It’s her birthday today.
Now in her late-twenties, I think back to that class she was in, which was one of my first (and favorite!) classes, and wonder where she and some of her classmates are. Through the grapevine, I’ve heard that she may be married. What a treat to know that “my kids” have matured and blossomed into adulthood! I’ve kept in touch with a handful of other kids that I’ve taught and am always so touched that they keep in contact with me. Several of them are parents now, and surely, other of my former students will follow in that role in the years to come. Like that flag of ours, I’ve always been proud of the kids I’ve been blessed to watch grow up.
I’ve begun to worry about them, though, Diary.
The older I get, and the more freedoms I see being taken away, I can’t imagine what sort of world their kids are going to grow up in. Already across several states, young parents will not be allowed to parent as I have. One single woman who I’d taught many years ago reached out to me when she’d read that the CDC’s MMR vaccine study was not accurate and was published with manipulated information. Not yet a parent, I could understand why she was distraught. She’s a young black woman. Always so upbeat and kind, I didn’t want to scare her, but I had to make sure she knew the truth. I confirmed that what she’d read, that the CDC lied to the public and misrepresented their autism findings in young black boys, was the truth. Would this information change anything for her and for her or her future children?
They’re desperate. They have to be. Why else would we see even more American representatives working so hard to protect liability-free products? In light of how many state legislators were successful in stripping parents’ rights during the 2019 legislative season, Products Over People! should be the new political motto.
The latest attempt to safeguard pharmaceutical products comes from the federal level to the people with a cunning title:
V.A.C.C.I.N.E. The Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act: The Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act will give the Center for Disease Control and Protection (CDC) resources it needs to understand what drives vaccines hesitancy and barriers to immunization. They will also be able to better track where there are changes in vaccine confidence or refusal rates. With this information, they will be able to predict where an outbreak might occur because of low immunization rates and target vaccine education campaigns to those areas before an outbreak occurs.
When I first saw that, I couldn’t help but laugh. The title. The smiling lab-coated doctor. The reference to the “settled science”. The V.A.C.C.I.N.E. Act read just like a pharmaceutical ad! I had to look twice to make sure it wasn’t a satirical piece like from The Onion. It was absurdly laughable. Rereading it, I realized that it was not fake.
Schrier’s bill, which was filed in May as H.R. 2862, comes with all sorts of pharmaceutically-driven statements, which can also be found on the CDC and FDA websites including that vaccines are safe, effective and save lives. The introduction of it, besides what one would read on pharmaceutical-funded documents, also comes with a complaint from one of the representatives in support of it:
As a medical professional for over 30 years, I find it absolutely ridiculous that we are seeing illnesses that should not be a public health concern now making a comeback. I sense a great deal of frustration from this doctor, but as a mother of a vaccine-injured child, I find it absolutely ridiculous that a growing number in the medical community, and now in the political arena, are so quick to dismiss informed parents. Informed parents look beyond Science. They have to because it failed their child. Doctors, and now doctors-turned-politicians, don’t want to listen to the parents. They’ve turn their attention away from those parents and their valid concerns about the safety and efficacy of liability-free vaccines. Simple questions, like asking why vaccines are being mandated when they contribute to outbreaks of the illness that thevaccine was supposed to prevent, aren’t allowed to be asked. Doctors could choose to educate their paying customers, but they kick parents from their practices instead of address parents’ concerns professionally.
Just when I think we can breathe a little sigh of relief, attacks against our community make headlines again. I expect it more nowadays, but it’s pitiful how much corporate media despises parents in our community. Who are we? We’re those who thought to question liability-free vaccines. We’re also people who stand up against forced liability-free vaccines.
Image source: Screenshots of headlines
Part of me is in disbelief that our efforts have achieved national spotlight. But the other part of me thinks, well, it’s about time! With all of the media’s energy and effort on drumming up vaccine sales and supporting vaccine policy, it’s hard to escape the topic. Once a private matter, all sorts of platforms have taken on the subject. Vaccine consumers would normally benefit from having platforms to talk about how their government supports pharmaceutical products that can fail. But not anymore. When former pro-vaccine parents in our community speak up, it’s become bad for business. Unless you’re all for vaccines, even the ones that cause the illness officials claim they will prevent, it’s not wise to speak up. Social media giants are making sure to shut us down, too.
That’s too bad because it was another parent who took time to take me aside to talk to me about vaccines and the adverse events that can follow vaccination, not any of the medical professionals my son was seeing. Those professionals wanted me to keep on vaccinating, even though the illnesses and medical problems he was having presented post-vaccination. When I tried to point that out, I got a sympathetic look and one of these pat responses: Vaccines are best. They’re for his health. We believe they’re for the greater good. And hey, he needs them to get into school, too. I got nowhere with medical people. Other parents, who were never judgmental and who were always willing to share their time even though they, too, had a child with special needs, were quick and happy to help me. It’s through their knowledge and guidance that made me realize I how little I knew about vaccines, including that they could cause serious issues.
Sadly, some parents are still very late to the party and are only now being made aware of table injuries, of Vaccine Court, and of the National Vaccine Injury Compensation Program (NVICP). But ironically, thanks to the media perseverating on vaccines, those aspects of vaccines are finally part of the conversation. Parents who’ve reached out to me privately recently are none-to-pleased that they have never been made by aware by any medical person that injuries are possible. Never have they been informed that the NVICP exists either. Imagine their shock when they realize that our government has paid out over $4 billion to families for vaccine injury and death. These parents might not get the whole picture from their doctors, but with the media’s incessant vaccine postings, at least new parents are beginning to learn what several of us did not learn in time – that not every vaccine is safe, and not every vaccine provides benefits.
Ronan has a few favorite things – books, songs, movies, and words. One of his favorite movies is the original Dr. Seuss Horton Hears a Who! cartoon from 1970. He found it on his own on Youtube and really loves certain parts of it. He loves showing us the silly Seuss-inspired musical instruments from the story also. Pointing carefully at his iPad so as not to rewind or fast forward the scene, he turns to us, stares intently at us to get our attention, and waits for us to say some of his favorite words of objects he sees on the screen: drums, cymbal, trumpet. I love the eye contact and the attention he shares with us in those moments. I don’t always love the repetition of him playing the movie over and over again, but I love that he finds joy in parts of a story that I sometimes overlook.
Ronan’s played another clip from that movie over and over again before. It’s toward the end where the Whos from Whoville all chime in together and yell, WE ARE HERE! WE ARE HERE! WE ARE HERE! Their lives were in jeopardy. Something had to be done to prevent a terrible tragedy. Working together, it took the entire population of Whos to let Horton’s jungle-mates know that they existed. It’s a great scene with a powerful message, but from mid-January through most of February, that was the one and only part of the movie that Ronan wanted to play. At one point when he would not stop rewinding and replaying that part, I looked at Ronan and thought, puh-leeze, kid, find something else to listen to! But then, when I heard him play that clip multiple times the next day, I thought, Wait, am I missing something? I know he’s here. I’m sure he knows I’m doing everything I can to help him, too. Since Ronan’s used parts of movies and songs in communication efforts before, I wondered, Is he trying to tell me something?? When I saw that he was just fixated and perseverating on the scene, I got tired of hearing those Whos yelling. I asked Ronan if he could please either lower the volume or find another movie to watch. By the end of that week, he’d moved onto watching a different film.
I got some reprieve, but then, about 4 weeks ago, Ronan started listening to Horton attempting to save the Whos all over again. Oh, no. I thought. Here we go again. But the times Ronan would replay that specific scene were uncanny. I’d hear it after I’d tell the family about the challenges and the threats other parents across the country were facing. Those challenges were stemming from liability-free vaccine legislation – from the Jewish families in New York, to the freedom fighters preparing to oppose SB276 in California, to the Mainers raising their voices about LD 798, to the group of parents rallying in Connecticut to protect their parental rights, there was much chatter in our family about vaccines over the last few weeks. Ronan has a lot of deficits because of his disability, but his hearing is not affected. He hears everything and will react to what he hears. Vaccine-related stories around the United States and in our home were intensifying. So was the frequency of Ronan playing that clip about the Whos from Whoville (that part begins around minute 18:45).
A couple of years ago when we discovered that Ronan was getting better at typing, I asked him to fill in a few short sentences. When he was finished, I couldn’t wait to show the rest of the family. We were all so excited to see his responses!
Mom ismom.
Dad isdad.
Ronan iswii bowling.
Izzy isnice.
Fiona islove.
For years, Ronan would only tell us what he wanted. I got used to his one-word requests, either by sign or his typing attempts, but craved to know more. Getting Ronan to the next level, like knowing what he was feeling, would take some time. It’s neat to see that he can do more than just make his wants known like this one from 2011:
PLAY MOVIE YES
NEW MOVIE YES
TRAIN
I WANT MOVIE
I love that Ronan has learned that his ability to communicate is important. One word at a time, he has been able to tell us not just his wants, but also his needs. When it’s too cold in the room, he types cold and asks for assistance to put on a jacket. When he’s upset with someone or something, he will now quickly type “feel sad” or “feel angry”. With prompting, I’ve been able to help him type full sentences. Since much of his communication still includes requests, I ask him to be polite in making them – address his helper and add please or thank you.
Non-verbal autism severely limits Ronan. Patience, determination, and his brave attempts at trying to talk while he’s typing continue to keep me hopeful though. His latest vocal outputs and his growing receptive language skills are encouraging to hear and see. Since he can comprehend much of what is going on around him, I try to find new opportunities for Ronan to join our activities and to find out more about what he’s thinking about. While we’ll always hope and pray for verbal speech, lately, we maintain the focus on writing and typing with Ronan. I’m glad we are.
One of my kids shared that they’d overheard a vaccine conversation earlier in the day. They couldn’t figure out what sparked the discussion. But, at one point while the other people were still talking, one of them turned to my child and said, “Hey, your mom is anti-vax, right?” I guess according to the media’s definition, I am. But if you really know me, or care to dig a little deeper than believe a superficial label that the media brands me, I am more than just an “anti-vaxxer”. I wrote about that not too long ago.
Depending on who’s said it, being called “anti-vax” can be an insult. The way it was said toward my son most likely wasn’t. I know that my child’s peers didn’t mean any harm while referring to Mrs. Jameson as "anti-vaxxer". They were just repeating what the news says about moms like me. Most of my kids’ closest friends respect me. Some even think that I’m really nice! When they see me, they are respectful. When they see me with Ronan, they are even more courteous. They show only love toward Ronan.
Seeing him and asking about him as many times as they have over the years has opened their eyes about autism, about the ongoing struggles he faces, and about his medical history which includes a vaccine injury. Because of their curiosity, which I always welcome, they’ve come to know that based on our family’s personal experience, we believe differently than they do about a few things. That includes vaccines. Liability-free vaccines are not as safe, effective, or life-saving as they and their families may believe. Vaccine injury is not their reality, and I’m very grateful for that. I don’t begrudge them for not knowing as much as we know, but I will always hope that they will politely agree to disagree with me, and my kids, whenever the topic comes up.
Not too long ago, people were allowed to believe differently than their neighbors did without any drama. That practice doesn’t hold true today. Nowadays, when people disagree on a topic, it’s grab the knives and pitch forks! Go after them! Ruin their reputation! Drag their name through the mud! Repeat lies about them! That’s become especially true when people, like parents like me, speak out against liability-free vaccines. Needing someone to blame for the rise in vaccine hesitancy, we’re attacked by industry spokespeople every time a vaccine story hits the news wire.
It shouldn’t be that way, but that’s what I see going on. Like a spoiled child, the media and its backers want to blame someone else for something they can’t control. They can’t control parents who have become vaccine smart. Instead of finding fault in the US vaccine program (which is not perfect), in the US government (for their overreach), or in the vaccines themselves (which all come with risk), the media has chosen to blame all of the “anti-vaxxers” for all of the vaccine problems. Having the means and the platforms to build up communities, the media encourages the public to pit neighbors against neighbors, school children against school children, doctors against rightfully worried parents.
The “anti-vax” are the ones responsible for all outbreaks – even though some outbreaks have occurred in the vaccinated.
The “anti-vax” are the ones ruining the herd immunity concept – even though it’s just a concept and even though vaccination rates are high in several states.
Note: I'm calling Mrs. Jameson Cathy Gaga today. Her message? "Just dance! It's gonna be ok...." That happens to be my Gianna's favorite Lady Gaga song. Enjoy this fun post! Autism month is almost OVAH!!!!
By Cathy Jameson
I had to wait until the end of April to create my Autism Action Playlist this year. I usually have several songs queued and on replay by now. But I gave up listening to music for Lent this year. I’ve given up other simple pleasures before, but this year’s sacrifice really had me aching for my tunes. With all the ridiculous measles stories popping up in my news feed this year and throughout this month, I wanted to drown out the madness with my music. I didn’t want to break the Lenten fast though, so I stayed true to my promise.
I knew I’d made a good choice in picking giving up music when the kids expressed how much they missed having the radio on. Ronan’s siblings love a good song just like I do. They love to fill our house and car rides with songs that keep us all smiling, too. Even though I decided to turn the music off, I could think about it. Songs from my past, songs I had just started to like, and music that normally calms my soul were not too far from my mind these last few weeks.
With Easter season now in full swing, it’s time for me to turn the music back on. With that, here is this year’s playlist with a brief explanation of why I chose the songs I did. Hear something you like? Get up! Shake your booty, and go dance in your kitchen. That’s what the kids and I do when the music moves us.
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World Destruction – I first heard this song when I was running track back in the mid-80s. A friend from high school turned me on to it. I liked it so much that I taped it off the radio and played it on my knock-off Walkman right before my races. The lyrics and the beat pumped me up and round and round the track I’d go! I’ve heard the song only once on the radio since then, so I’ll play it online every now and then. I find the message more appropriate today than when I was a teen. Certain issues, including parental rights, are important and are absolutely worth fighting for. The people who should give a damn about protecting them don’t though. Heading for destruction, it pains me how messed up the world seems to be these days.
In My Blood – Doom and gloom aside, we have options! Even if …sometimes I feel like giving up… I won’t give up. I can’t. Ever! It’s tempting, but that’s when I reach out to a friend to help me get back on track. Things get better when people work together. Even if the walls are caving in, as it sometimes feels they are lately, I know that we can make a difference.
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
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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
Cathy Jameson
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.
Source: Congress (continue reading the entire Resolution by following this link.)
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)
Source: FDA
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
What’s next?
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?
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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.
Silence.
More silence.
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?
Silence.
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.”
Exactly.
“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.
RUN!
Who’s infected?
She is!
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...
Like when one Congressman took the floor and begged his fellow members of Congress to do what they said they were going to do. Please!Listen to the people!!
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!
Years ago, this video made the rounds as the 2006 flu shot season got under way. As much as I loathe this particular shot and the problems it caused my son post-vaccination, I couldn’t help but laugh.
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