I normally play a movie for Ronan once he’s buckled into his car seat, but I turned the radio on instead.
There’s a lady who’s sure all that glitters is gold
And she’s buying a stairway to heaven.
When she gets there she knows, if the stores are all close
With a word she can get what she came for.
Ooh, ooh, and she’s buying a stairway to heaven.
Led Zeppelin's Stairway to Heaven had just started. “Nothing’s glittering with gold around here,” I grumbled. Sweat, tears and frustration were more like it.
Ronan had just had a 15-minute meltdown. It began right after he’d woken up. It intensified when he refused to get out of bed. It became physical when he decided he didn’t want to leave his bedroom. It worsened when he resisted getting into the car for school.
Wake up time is not usually difficult. Thursday morning would be like other mornings. Or so I thought. Ronan began to stir just after 9am. I let him slowly wake. At 9:15 I pulled the covers back. It was time to get up, change, grab a bite to eat and head to school.
Our morning started out peacefully, but the peace and calm lasted for only about 30 seconds.
I sat on Ronan’s bed as he stirred awake and greeted him with a smile saying, “Time to get up!”
He signed NO and put a blanket over his face.
“Come on, Buddy. Let me change your diaper and get you into play clothes,” I continued.
A hand emerged from the covers. NO.
Still buried under blankets and now his pillow, I managed to get Ronan’s diaper changed and his shorts on. Trying to get his socks on wasn’t going to be as easy. Ronan began to kick his legs and pull them under the covers. It took a little bit longer, but I said to Ronan cheerily, “One sock on. Now the other one.”
Ronan was not pleased. He signed NO, NO, NO. Then he rolled over.
He usually offers some assistance in getting dressed, but he didn’t want to help Thursday morning. “Almost done!” I sang out.
What usually takes less than five minutes took just over ten. We had no time to waste—it was Ronan’s last day of school.
“Come on, honey. We need to go,” I pleaded. Seeing that he wanted to stay snuggled under his covers I promised him he could bring his favorite blankie when he got up. I also said he could pick a movie to watch on the way to school if he would cooperate with me.
NO, NO, NO!
Two of my friends are pregnant. Both are in their 40s. Both have a typical child. Both also have a child on the spectrum. Both have been enthusiastically congratulated. I was happily shocked to learn of each of these pregnancies. Then I was excited. It’s almost as if these pregnancies are a first-time pregnancy. With all that these Moms have already gone through, they sort of are first-time pregnancies.
No longer will Mom be timid about what typically happens in a regular OB office.
She is so much more informed!
No longer will Mom let one person dictate all that she must do.
She knows she has other options!
No longer will Mom allow a medical professional trump her mother’s intuition.
She now has experience, knowledge and confidence on her side!
In each case, Mom knows so much more. She knows how to ask for certain things. She also knows how to politely yet firmly decline others. Mom wants so many things to be different and better. Yes, better. Better for her and better for her unborn child.
Part of me is worried for my friends. Being pregnant now, compared to ten or fifteen years ago when youth was on their side, will surely be different. According to literature, they’re OLD. Old means tired, exhausted, fragile. But, knowing these women and their personalities, old is just an adjective, and would never be the first one I’d use to describe them.
Both Moms are active in their other children’s lives. They are both movers and shakers in their own communities. They are both looked up to, respected and sought out for advice. Who better than an already inspiring woman to bring new life…and hope to our world.
Sure, I’m a little worried for my friends, but I’m downright giddy that these two women are pregnant. I’m more excited for these pregnancies than other. They will be far different than that of the younger people in my life. The younger people are having their first and second children and are clinging to every word, statistic and procedure their medical provider tells them. Then, their children are taken to every appointment that the powers that be have dictated. When pictures are shared, I see darkened circles under baby’s eyes and hear of food allergies, eczema, early speech problems and endless sleepless nights. Red flags are waving violently behind baby but Mom has yet to connect the dots or see the destructive path her children are walking.
Ronan had a spectacular Fourth of July this year. Because his day was good, mine was too.
Instead of being disappointed like I was this time last year, we, meaning me, had already taken it down a notch as far as holiday expectations were concerned. In past years I would have wanted to cram as much fun as possible on a day off. This year, we picked one thing that Ronan could do and that he could do well.
Our family had a few options— play tourist in the big city looking at the sights, hang out with friends across town, or stick around in our own neighborhood joining other families down the street for a block party. All were equally exciting opportunities for us, but we decided that staying closer to home would be the best option.
Being steps away from the amenities of our own home (and all of Ronan’s ‘must-have’ like his iPad, allergy-free foods, favorite movies and such) gave us the chance to celebrate our nation’s birthday with ease. Being well prepared for whatever situation presented itself once we arrived to our neighbor’s house, and the fact that Ronan was willing to do something different, played a big role in the success of our day. Ronan had fun. He played in the pool with the big kids. I had the freedom to actually sit and visit with people. Ronan was melt-down free. He ate a full meal without any fuss which means I ate a full meal with hardly any interruptions. I even had a few conversations with neighbors that I was able to start and finish. I didn’t need to pull out any of our Plan B, or C, or D tricks because Plan A was working so well!
Off to celebrate! Ronan had his headphones, his safe foods and a means to get there and back without tiring.
As I was sitting in my church pew last week feeling sorry for myself, I felt as if I got hit over the head. I don’t know how he does it, but it feels as if my priest is speaking directly to me when I’m sliding into a mental funk. He has a way of knocking much-needed sense into me when I least expect it. Apparently, I needed a good smack upside my head since last weekend’s homily was no exception.
I have constantly struggled with having and not having a diagnosis for Ronan. Clearly the child has some issues. A few years ago I was only worried about finding out what to call it. I had settled for vaccine-induced autism but had a nagging feeling it was more than that. Was it a deadly chromosomal abnormality? Maybe it was epilepsy? Was it really autism? Could it be one of those mitochondrial diseases? We’ve asked top-rated doctors, conducted über-expensive testing and finally did receive a diagnosis. I thought I would be able to accept Ronan’s mitochondrial disease diagnosis for it took years to be identified. I’d waited a long time to hear an official diagnosis but I didn’t expect to hear that it had features of autism. Great. It’s one thing but acts like another.
Not a day goes by without my thinking, is it just autism though? I can recall doing massive web searches back in the early 2000s when Ronan was a toddler. I distinctly remember reading about autism and thought to myself, no, that’s not my son. I even went so far as hoping it would rather be more like Asperger’s, not just autism, because children with Asperger’s had higher levels of language abilities. I looked further at what the spectrum included and thought, w-e-l-l, maybe it is autism but then Ronan was never 100% fully on that spectrum all the time. He would swing back and forth with one day being more cognitively aware than another. He has words but uses them oh, so sparingly. He can take apart many things but hasn’t the fine motor capability or patience to put things back together yet. As Ronan spiraled further away from me and deeper into whatever it was that he had, my thoughts were of what Ronan couldn’t do, and I couldn’t free myself from those thoughts.
Little did I know that what I sought was freedom from some negative aspects of being Ronan’s Mom. I’d love to have freedom from a diagnosis, any diagnosis. I yearn to be free of the stressors of being full-time advocate to a little boy with all his special needs. I ache to be liberated from the worry, the pain, the limitation, the speculations and the judgment of others. That type of freedom, freedom from, holds me back from the freedom to.
By Cathy Jameson
Hush, now. It’s okay. Close your eyes. Sleep. Shhhhh, she whispers. Shhhh….
A young mom is quietly lulling her toddler to sleep. They are sitting in the pew in front of me at Church. She holds him gently in her arms while stroking his hair. At the end of the pew is the woman’s husband. He is handsome, relaxed and proud of his family. He glances over at his wife, reaches for and touches her shoulder. On either side of the young mother are the toddler’s older siblings. Ages 7, 5 and 2, this family’s children appear healthy, happy and typical. Subconsciously, I smile. I think about how perfect they look and how lucky they are.
I see families like this one often. Normal moms. Typical kids. Regular dads. I walk past them at the grocery store, in parking lots and around our community. I take in the ease of their movements and the liveliness of their conversations. As I watch and listen to them, I long to experience what I think they have—freedom.
Do they see what I see?
Do they appreciate what they have?
Do they realize how fortunate they are?
They are free of seizures, of wandering and having to draft IEP goals. They are not ruled by weekly therapy appointments, on-going doctor visits and support groups. Their schedule is theirs to create as they wish. I know I’m just a stranger looking in, and I realize that I see only a fraction of their day, but as an outside looking in, I can tell that their life is very different than the one I live.
Normal moms. Typical kids. Regular dads. I used to be that person, living like those people and participating in their lifestyle. I don’t run in their circles now, and they rarely step into mine.
Years of managing my son’s vaccine-injury and the medical issues that came with it has done a number on me. On days when Ronan’s health takes a turn for the worse, not only does he tank, but I do too. I’m no longer the relaxed mom who thinks she can take everything in stride. I panic. I mentally run away. I become hyper-vigilant, overstressed and sometimes a tad judgmental.
I think back to when this all started. I want to curse my foolishness and the choices I made. I close my eyes remembering the past and can’t help but wonder how different life would be if what happened to Ronan really didn’t happen. Some days I even wish that this wasn’t happening. Pretending that things would magically return to what I considered normal won’t help. That’s when things can go from bad to worse.
On those very tough days, my thoughts become clouded and my hopes are crushed. It’s hard to be hopeful when my child’s life is documented in a case file, in multiple case files actually. Lots of people would agree that it’s better to have a positive attitude. But with all that I have had to overcome, and with how children are still being vaccine injured like Ronan was, my heart isn’t always in the right place. And sometimes it stays somewhat hardened. I feel it harden more in certain situations.
As much as I try to not let it affect me, my heart hardens when I learn that typical moms choose to follow the same steps I took that I wish I’d never taken.
I’ve seen quite a few quizzes posted on Facebook lately. From What Kind of Animal Should You Get? to Which TV Mom Are You? and Where Should You Live?, people are letting an algorithm tell them something they probably already know. These quizzes are usually done for pure entertainment purposes, but many people are quite proud of the results and post them for others to see:
“Dog. Of course! I love love love my dog!”
“Sweet! I got Mrs. Brady. She’s always been my favorite J”
“Texas! Been here all my life and have no plans of leaving!”
As silly and fun as these quizzes are, I wonder if parents were given a real quiz, say at their child’s “well-baby” visit, could they answer the questions correctly. They’d be simple questions, as you will soon see, but, I wonder if people would have the vaccine knowledge to answer the quiz correctly. There’s only one way to find out.
Go ahead. Take the quiz:
What Do You Know About Vaccines?
1. What are the vaccine laws in your state?
2. Does your state mandate that all children get all vaccines to enter school?
3. What is a vaccine exemption and who can get one?
4. If your state has a vaccine exemption, which one(s) can be granted?
d) none of the above
5. If you are being bullied into getting vaccines, either from your medical provider or from a school nurse, what action(s) can you take?
Today is another ‘holiday’ for many here in the United States. Across the country thousands of Fathers are being put on a pedestal to be honored and remembered.
Dads of younger children will be met with happy faces, sweet giggles squealing a “Happy Father’s Day, Daddy!” greeting. Warm hugs and lots of smiles will be given. So will handmade arts and crafts, ugly ties and gift cards to sports’ events and hardware stores.
I know that the many of the Dads in our own community won’t hear their child say, “Happy Father’s Day”. They won’t receive personal gifts from their children. Their children, like my son, are incapable of understanding the meaning of today’s festivities. Our children might be able to participate in some Father’s Day activities, but it might be only because they are directed or told to do so. It’s not that our children are being rude or are dismissing the role that their devoted father, it’s that they have no understanding of the concept. The regressive nature of the autism many of our children have prevent them from that. They cannot talk. They cannot wish Dad well. And they don’t know how to partake in days set aside to honor their Dad.
Our children won’t ask Dad to meet them in the front yard to toss the football. They won’t sit next to Dad at a hometown baseball game. They won’t ask to join Dad in the garage to tinker under the hood of the car. They won’t suggest to ride bikes to the pool either. It’ll be a different type if Father’s Day for a lot of the Dads in our community. Diapers will be changed on our pre-teen children. Dietary restrictions will rule the celebration. So might another sleepless night and unpredictable self-injurious injuries.
Dads in our community, the ones who stay devoted despite disappointment, despite major struggles, despite being rerouted to a different path they now travel are the ones we wish to honor today. They are the ones who remain true to their role as father, as protector, as guide and as teacher. It may be a different sort of teaching, a different way to guide and involve protecting their child in ways they never imagined, but the role autism Dads play are important and just as valuable.
The public is fed carefully crafted stories of communities coming together to celebrate autism. We’re told to look away from the causes and to accept the growing rise of autism in mainstream news articles. Those autism stories are full of rainbows and unicorns. The story I’m sharing today is not one of those.
Unless they’ve discovered alternative news sites like ours, the general public rarely sees the other side of autism, the side that includes daily struggles, disasters and pain. That’s what today’s post is about. I wrote it January after Ronan and I had come home early from a birthday party. I hadn’t planned on coming home as early as we did, and I didn’t mean to leave the story sitting in my writing file all winter long either. I put it, and the emotions that came with that day, aside.
I’d love for rainbows and unicorns to be in all of my stories. I really would. But my son’s autism, and the reality that comes with it, can sometimes be very, very different.
We’ve been hanging out with another family for over a year now. They have two boys around the same age as my younger children. Our kids go to different schools, but BBQs, weekend parties and scheduled playdates keep us in touch every few weeks. Even with how busy our own family’s schedule is, and with how uneasy and sometimes unpredictable Ronan’s behavior can be in social gatherings, I look forward to seeing these friends. From catering to his dietary needs to making sure Ronan’s favorite movie can be quickly started, spending time outside of our own four walls with this family is easy to do.
Ronan has had great success at each visit to their house, so it was a no brainer that we’d join the family for their boys’ birthday party on a Saturday afternoon. Parents were invited to stick around for adult conversation and snacks while the kids enjoyed birthday party activities. My husband was scheduled to be out of town for over a week, including that weekend, but I knew that by the time the boys’ birthday party rolled around I’d want a break from being a temporary “single” parent. Because Ronan was doing so well at previous social gatherings, I happily accepted the invitation.
I don’t usually have to prepare Ronan for a visit to the house in advance because he knows what he can and can’t do. He knows what he can and can’t touch. He knows what he can and can’t eat. He knows he’s welcomed with open arms and that all of his needs will be met. But, because of the birthday excitement that greeted us the moment the front door opened, Ronan became anxious and clung to me. The group of kids who had already arrived, and the volume of their noise, was overwhelming. There were new kids. There were loud kids. There were lots of kids. And there were more kids waiting to walk in behind us.
I didn’t realize how many different people, sounds, activities and smells Ronan was going to face. I always welcome extra attention from Ronan because he usually prefers to be by himself, but the anxiety he felt the instant we walked into the house not only gripped him, but it gripped me too. My four typical children scampered off to join the other kids, but Ronan stayed next to me. Leaning closer to me and reaching for me, Ronan grabbed my hand and held it tightly.
Not wanting to rush Ronan, I walked toward the kitchen and said a quick hello to our friends letting them know we had arrived. I nodded to the other parents hoping to introduce myself but bypassed the festivities to try to get Ronan settled. He needed to relax before I could.
I walked us over to his usual spot where Ronan is the most comfortable in the house and I stayed with him. He’s usually quick to get comfortable and as long as one of us has “eyes and ears on Ronan”, I can take a few minutes to socialize. Not this time. Ronan was still glued to me and wasn’t about to break the seal.
Taking a seat on the couch in the playroom, Ronan scanned the room. He watched the typical kids doing typical things, but again he became overwhelmed.
They were just being kids.
But there were too many of them.
They were just playing games.
But there was too much going on.
They were just laughing and enjoying typical birthday activities.
But they were being too loud.
Retreating into me once more, I gave Ronan a hug. I reassured him that I was not going anywhere. I rubbed his back and also applied deep pressure to his joints—something that usually begins to calm him. It didn’t work though. Ronan was already at heightened alert.
By Cathy Jameson
Tomorrow, June 2, is Little Buddy's birthday. I am grateful for the blessing that he is to our family. Little Buddy's biggest wish is not for more LEGO toys or to be able to spend all day playing with friends. His birthday wish has always been dedicated to Ronan. So are all of the daily prayers that Little Buddy says. I share those wishes with Little Buddy and also pray for the day that Ronan will catch up, that he will talk and that he will want to play along side his devoted little brother. Happy Birthday, Little Buddy. You are a treasure!
Fool me once, shame on me. Fool me twice, shame on you.
I often write about my son Ronan here. He’s my inspiration and the reason I work so hard in the autism community. Ronan, despite the many obstacles he faces, reminds me to stay ever hopeful. He is why I keep writing.
I could very easily take advantage of writing about the new autism numbers, how the math really doesn’t add up, that there are far more affected than being reported because the data from the statistics are four years old or that truly, the new rate is very alarming. But I’m done thinking about the rates for today. Letting those numbers swim in my head (which, by the way is 1 in 88 children and 1 in 54 boys) for the last three days has done nothing good. My eyes are puffy from crying on and off for two days straight as I thought about all the children affected. I’ve had to scrape myself off the floor after watching some news reports that don’t question WHY the rates are so high. I haven’t been able to concentrate on the house, my kids or even myself because of those numbers. I’m honestly a mess, but I need to share something else today.
Today I’m going to reflect on the 1 in my house and how because of that 1, because of what happened to him, that 1 helped save a life.
I don’t usually share this story. Not because I’m hiding it. In fact I’m quite proud and grateful beyond words. I don’t share it because even though a life was saved, I had to jump right back in to managing the repercussions of Ronan’s life as it continued to unravel.
Ronan will still be in the limelight of the story. That goes without saying. But the cast of characters today includes this other life. You’ll read what happened to that life and what I learned from it all. Ronan probably has no idea how heroic he is, but because of Ronan his little brother, my other son, escaped what I think could have been similar fate.
Because of Ronan Little Buddy narrowly escaped harm from his own vaccine injury.
The setting? 2004-present. The scene? Our home. The plot? It doth thicken. The antagonist? Vaccines. The outcome? Read through to the end. It is time to share this story.
Boys Will Be Boys
I had just started to hear about something called thimerosal when Ronan was almost two-years old and while I was pregnant with Little Buddy. But, since I hadn’t read too much about it before I dismissed it as one of those chemistry-type words I hated. We were in the process of remodeling our home and putting it on the market so my computer time was limited. Days were filled with nesting, cleaning up several house projects or chasing Ronan who was not yet walking but managed to get into everything. Doctors weren’t alarmed by Ronan’s lack of development, and back then I trusted implicitly what the doctors said.
But, I was somewhat alarmed about Ronan and thought maybe I should be more alarmed. I was so naïve. I was waiting for Ronan to outgrow his immature skills. I was told boys develop slower than girls. He’s got time, no need to worry. But something wasn’t right. I need Ronan to catch up before the baby was born. I couldn’t do this thing with Ronan with a newborn. I kept asking what I think were the right questions to the people I sought out but got nothing helpful in return. I was pregnant, and tired, and chasing a kid with issues which seemed to be invisible to the very people who should be noticing them. Ronan would be fine, right? I was too trusting. And, I was tired. Mom, take care of yourself. Don’t worry. He’ll catch up.
I couldn’t do much research by the time Little Buddy was due. Fatigue set in and sitting for long hours at the computer while big, fat and pregnant just wasn’t working. I had at least decided I would not be injecting some vaccines into my children because some of them didn’t seem right to use. I’d come across a list of vaccines that were created from aborted fetal cells. That decision to not allow those into my kids should’ve reduced some of the vaccines Ronan and his soon-to-be little brother. But I had just become research savvy and found alternative vaccines not made with the aborted fetal cells and requested those instead. While continuing to follow part of the recommended vaccine schedule Ronan continued to stagnate with his skills. He didn’t look the poster child of a child with autism. So, I carried on.
My previous post You Get What You Get, Part 1 – Mistruths and Muddied Reporting included a memory of the use of an expression that I’d heard years ago when I worked as a camp counselor at a very exclusive beach club. In my post I retold the story of why our summer camp motto, “You get what you get,” was stated. Saying it when one of our campers was about to complain about something that really didn’t need to be complained about, a quick reminded of “You get what you get,” was usually all it took to redirect their attitude. The saying didn’t work all the time for everyone one of our campers, but, if a child chose not to respond politely, they knew that there would be consequences for their behavior.
A lot of people, including the mainstream media, which has inaccurately published stories about the recent vaccine-induced measles and mumps “outbreaks”, have forgotten that vaccines come with consequences. Some of those consequences are immediate and short lived while others are detrimental and can last a lifetime. That information, which I think is important, has been missing in some reports, so I thought now would be a good time to remember what vaccines can do and what they cannot do.
First, a pop quiz.
Please answer the following:
True or False: Vaccines provide immunity.
True or False: Vaccines provide better health.
True or False: Vaccines provide the eradication of disease.
If you answered False to all three questions, you are correct!
And here’s why: when someone opts for a live-virus vaccine, such as the MMR (measles, mumps, rubella) vaccine, viruses in the vaccine are injected into their body. The viruses then, in a process called viral shedding, can be exposed to others. Exposing others can happen if the vaccinated do not stay away from other people during the shedding process. Worth noting, and quite likely why the recent “outbreaks” continue, is that vaccinated people are finding that they too are coming down with the diseases that they thought a vaccine would ward them against. The consequence, and the potentially dangerous nature of this situation, is that instead of immunity, more people are getting sick from vaccinated individuals who may be unknowingly spreading the very diseases that they were vaccinated for.
I worked at a beach club one summer many years ago. Membership was private, very private. From what I was told, one had to be “born into” their membership which made the club more exclusive than the other private beaches in the area. Several of the members could trace their roots back to prominent businessmen and their families who were integral in the rise and success of the American Industrial Revolution. I ran into some of those members occasionally, but it was their children whom I was assigned to work with that summer.
One thing that has always stayed with me from that job at the beach wasn’t the experience of getting a peek into how the rich and famous played when money was no object; it was of an expression that my fellow camp counselors used: “You get what you get.”
That expression was stated after one of the children forgot to use their manners. One of the counselors said it as a gentle yet firm reminder to be grateful for a treat they were just offered. Popsicles, which came in three different flavors in a variety pack, were being handed out. By the time it was the last child’s turn to receive his, there was no guarantee he was going to get the flavor he wanted. Face scrunched up and ready to protest, he got a dose of reality and a reminder that to have any refreshing Popsicle on a hot summer day was a treat even if it wasn’t the exact flavor he had hoped to receive.
“You get what you get” was repeated a few times for a few days with our campers. As we eased into a routine, and as expectations were established and polite responses from the children returned, things began to run smoothly. Instead of having to harp on using nice manners, we had more time to frolic on the sand and to play in the ocean. By the time summer camp was over, we’d diminished the use of reminding the kids that “You get what you get.”
“You get what you get.” It’s a response that can work on both kids and adults. It can work in lots of places and in many situations. It could help to diffuse a behavior before it escalates. It can also be said as a quick reply to end an argument, but I find that it is more effective as that gentle yet firm reminder.
One such instance where this reminder should be said more often is in mainstream articles and on television news shows when the topic includes the measles and mumps “outbreaks”. If reporters would truly take the time to thoroughly examine why such “outbreaks” have occurred, a gentle yet firm reminder of “You get what you get” would’ve accompanied their reports.
To my knowledge, adding that reminder hasn’t happened. I will say that, surprisingly, some of the reports I’ve seen have provided some useful information, including the most important one—that the diseases being spread have originated among those who’ve been vaccinated. But, as quickly as that fact is stated, the story makes an unnecessary turn and places a mysterious and incorrect blame of the “outbreaks” on the unvaccinated.
Moms are often told that they know their child best. They hear that statement in the doctor’s office and sometimes by their child’s teacher. When I hear it being said to me, I hold my head up high. It’s as if someone has just given me a badge of honor, “Cathy, out of everyone here, it’s you who know Ronan the best!” And it’s true.
In the past when I was told that I knew Ronan and his needs the best I questioned why it needed to be pointed out to me. Of course I knew my child. I’ve spent the most time with him! Of course I knew what he needed. I evaluate Ronan and his needs daily! It was a no brainer that I absolutely should be considered “the” expert on Ronan. It’s not only what I was, it is who I have become.
Most people who would think to say to a mom that she knows her child best do so with the utmost respect. But, I’ve found out several times now, that the “You know your child best!” statement can be delivered two ways. The first way is done so as a compliment. The second way it can be delivered is adversarial. That shouldn’t happen, but it does. It happened years ago to me.
At the end of a long day of medical testing, I was told, “Mom, you’ve done a great job. You have concerns and we’re impressed that you want to get Ronan some help. You know him best, and you’re right, Ronan does need help.”
That day was an incredibly difficult day, but hearing the compliment and knowing that my concerns were indeed legitimate, I sat up straighter in the uncomfortable exam room chair. Oddly, as quickly as I was told that I knew Ronan best, my concerns and input were disregarded.
After reviewing the results of one of the tests, one of the doctors said that Ronan would need to start a medication immediately. The medication came with a host of side effects that sounded far worse than the condition they wanted to treat. After hearing the side effects, and also being told the drug would offer no guarantee that it would lessen what Ronan was going through, my gut told me no. Why would I want to compound the issue he was facing with new issues, one of them being fatal?
I wanted to verify my apprehension with the team of doctors and nurses who were assembled in the exam room on behalf of Ronan that day. I asked the lead doctor why he was prescribing this particular medication. Thinking maybe I was being overly concerned because I was the least medically savvy out of the group, I needed to hear that my uneasiness about the medicine was in fact justifiable.
I stammered, “Uhhh…well, it just doesn’t seem like this drug is the right one if it causes more problems and has such intense side effects.” While I asked the question, I looked to one of the nurses to see if I could read her reaction. I saw her eyes dart from my gaze. The resident stood stoically silent next to his mentor. The head neurologist and his partner stared down at me. I felt myself shrinking into the now very uncomfortable chair as I waited for their answer. I wondered, did they mean to butter me up and then shoot me down in one quick moment? Why would they do that when they just told me everything I’d done for Ronan was the right thing to do, including bringing him to the clinic for these tests?
We got rid of cable television a few years ago. Tired of the subtle indoctrination and the in-your-face consumerism, it was time to turn off the talking box. We still watch TV shows and movies doing so through other means. We might be a season or two behind what everybody else is watching, but we watch what we want and when we want to on our own schedule (and without commercials, including endless pharmaceutical advertisements).
A few weeks ago my husband and I finished viewing a season of a popular television show and needed a filler before choosing something new show to watch. We ended up on Youtube one night and stumbled upon Jimmy Fallon’s Tonight Show channel. We watched a few clips that night and found ourselves looking for more funny clips several nights later. We’re hooked now and make a point to check out his skits the day or two after they’ve aired.
Jimmy’s Thank You Notes segment on his show is one thing that makes me giggle. Sending a thoughtful, and sometimes snarky message of thanks to someone or something creates some enjoyable belly laughs. They are nothing about autism and everything about humor, something I rely on to get me through some of life’s tough days.
I’m a big fan of handwritten thank you notes myself. Today, I’d like to share some of my own with you. All of them are addressed to Autism Awareness Month, which after 30 long days, is about to end.
If after reading my thank you notes and you feel I forgot something, go ahead and add your own thank you to Autism Awareness Month in the comments section below.
Thank you, Autism Awareness Month, for starting the festivities off with news of the updated national autism rate. Too bad you’re off by a couple of years.
April 26 began the CDC’s National Infant Immunization Week. This week-long event includes 8 days of hoopla. From observing to celebrating them, the CDC will surely share only achievements they perceive as positive. Those who endorse and administer immunizations will once again promote the ever living stuffing out of them sharing only one side even though another side exists.
National Infant Immunization Week (NIIW), set for April 26 – May 3, 2014, is an annual observance to highlight the importance of protecting infants from vaccine-preventable diseases and celebrate the achievements of immunization programs and their partners in promoting healthy communities.
2014 marks the 20th anniversary of NIIW. Since 1994, hundreds of communities across the United States have joined together to celebrate the critical role vaccination plays in protecting our children, communities, and public health.
Please note that I am exercising caution while using the term immunizations in this piece and will replace it with the word vaccine. While immunizations were designed with the hope of creating life-long immunity, immunity isn’t a sure thing. In fact, diseases these immunizations supposed prevent actually still exist, and according to the media, are coming back in droves causing major “outbreaks” in several area across the US. Oddly, with these increased “outbreaks”, instead of ceasing use of the immunizations associated with them, in the same news reports that state immunized individuals are spreading a so-called “vaccine-preventable” disease, it also says to run right out and get another immunization! With the first two doses and a booster obviously being ineffective, my guess is that the CDC hopes that a third, and even fourth, dose will hopefully do the trick.
While the CDC stands there scratching their heads about the latest vaccine debacle, this week will see them patting themselves on the back for the immunizations that they say do work. I don’t think they’ll be advertising the other side of vaccines, the one that creeps into many parents’ conversations as that can get ugly. It’s the side that includes full disclosure of certain ingredients still found in vaccines. It’s the side that has one parent weeping for their vaccine-injured child’s past while the other parent fears for their child’s future. This side of vaccines should be more readily discussed but isn’t. Fortunately, some people are being vocal about vaccines and are boldly publicly questioning them.
It isn’t possible when negative emotions stick around and cloud my thoughts.
It can’t be doled out quickly when constant reminders of an offense surround me.
As many times as I’ve thought about how to come to terms with my reality, finding forgiveness hasn’t been one of those things on my list of things to do.
To forgive and let it all the evils wash away—the guilt, the pain, the anxiety, the despair.
To forget and be free of those negative emotions that linger—the anger, the disappointment, the difficulty.
Can I really do that?
Can I truly forget how Ronan’s downward spiral began?
Can I honestly forgive the ills that brought Ronan to where he is (and isn’t) today?
Can I totally look past the medical neglect we discovered only too late?
Can I completely overlook the medical abuse I didn’t recognize?
Can I fully embrace the life-long struggles Ronan may face?
How do I accept all of that?
Here’s what I can accept. I can accept that all of that did happen to my child, but I will not accept that it had to happen.
Here’s something else I haven’t been able to accept. Not because I turned it down but because this too hasn’t happened yet—no one has yet to apologize to my son for the opportunities he’s missed, for the childhood he’s lost, for the pain and the complete health he may never regain.
Come to think of it, I think my whole family could use an apology. Shouldn’t someone have said sorry to me and my husband for the extra stress, the time lost and the things we’ve been denied as Ronan’s parents? Shouldn’t someone have also begged forgiveness of Ronan’s siblings for being gypped out of a playmate and a typical brother and their own altered childhoods?
When are those apologies coming? I’m not saying I’m holding out for those before I can forgive and forget, but it sure would be nice for someone to admit that they played a role in all of this.
Forgive and forget. As much as I’d love to, oh how I’d really love to be able to say to several of Ronan’s former doctors, “Hey, Doc, I forgive you…..”, but right now, today, this week with what Ronan’s gone through and with what I’ve had to fix for him, my apology isn’t quite ready. In fact, it might not be ready for a long time.
To offer forgiveness, if I really, really had to do that today would be a bit jaded. It would go something like this:
I’d rather my child have autism than the measles!
Really? Really?! I wanted to shout to the mother who left that comment. Because autism is so much easier to manage? Because autism runs its course and things can go back to the way they were before? Because autism lends itself to better health, development and lifelong skill development? You have no clue, NO clue.
I read that mom’s comment a few weeks ago on a thread about vaccines and the measles when the measles “outbreak” first made the news. At the time less than two dozen cases of the measles had been reported. Now we’re hearing that over 100 people have contracted the disease. They’ve even pinpointed a “Measles Mary” http://news.sciencemag.org/health/2014/04/measles-outbreak-traced-fully-vaccinated-patient-first-time — the first person who of the “outbreak”. I’m curious if officials will make her wear a big letter M somewhere on her clothing to warn others of her measles-riddled body.
Measles is a contagious disease that can spread in the wild (naturally) and is proving to spread rather quickly post-MMR vaccination as well and though vaccinated populations. Measles, which is one of the components of the three-in-one vaccine, is recommended twice on the current vaccine schedule in the United States.
The adult vaccination schedule also includes a recommended two doses of the MMR vaccine:
We’re celebrating another traditional holiday in our house today. Long gone are the expectations that Ronan will patiently sit throughout the Easter festivities though. It’s okay. Ronan makes up for his impatience in one area by dazzling us in another. Take his spelling for instance. It.Is.Taking.Off! I couldn’t be more proud of Ronan—he’s learning quickly and using his voice output device to label, ask questions and to tell us what he wants, see, needs and likes. He’s even sounding out words letter-by-letter that he wants us to hear. It’s very exciting.
Other parts of Ronan’s life are going at his usual snail’s pace. He does things a little bit at a time as he’s able (and sometimes on his schedule). But the pace Ronan is working has just enough momentum to shows me that he’s creeping toward progress. Slow and steady is how a lot of people learn. Ronan is just taking a little bit longer to perfect his skills and to be ready to work on the next one.
I heard this song on the way home mid-week. It reminded me of a lot of things we’ve hoped and done for Ronan. I’ve always said it’s the little things Ronan that is able to share with us that keep us going. I’ll quickly forget that on the bad days when things are difficult for Ronan, but other people keep me in check reminding me to focus on his growth and to remember how much of a feat it was for Ronan to accomplish something.
Being able to see the transformation of what was to what is (while looking forward to what can be) has my entire family, from the super siblings to our extended family across the miles, celebrating Ronan’s efforts and advancements a little bit at time. We cling to the little bit of this, the little bit of that and whatever else we need to cling to for Ronan and sometimes, for each other.
Just a little bit of determination opens a door that had been previously shut.
Just a little bit of sacrifice here makes an opportunity available over there.
Just a little bit of darkness makes us turn around and find the light again.
Just a little bit of a dream turns the unimaginable into reality.
Just a little bit of hope helps keep a dream alive.
Managing Editor's Note: Below is an excerpt we encourage you to share from Megan, of the LivingWhole site. From her bio, I have a degree in Political Science, a law degree, and am a Naturopath, Certified Natural Health Educator, Registered Power Yoga Instructor, writer, and stay-at-home mama. My better-half holds a biology degree, chemistry minor, is a Family Practice Physician, and is a Captain in the United States Air Force. Together we have four kids under three; and yes, we plan to have more. We encourage you to bookmark LivingWhole.org.
I am sick of it – this vaccination debate. My convictions not to vaccinate have been firm for six years now and I was comfortable living a low-profile life and letting other more notable activists carry the torch; and then I started seeing misleading t.v. interviews, news stories, and backlash against parents and unvaccinated children. I saw reputable medical professionals get crucified and reputations destroyed for questioning the mainstream norm. I saw laws passed in other states removing freedoms that rightfully belong to parents and individuals as a whole. I saw fear, blame, finger-pointing, lies, and flat out hate being propagated and encouraged by people, physicians, and popular media avenues towards parents who don’t vaccinate, and their children.
This isn’t a vaccination debate, it’s a hate debate, so let’s call it what it is. And when it got personal, I got involved. Most importantly, I felt the need to clear a few things up:
I am not an “anti-vaxxer” or a “disinformation activist.”
I am a parent. Some people believe that parents can’t make an educated decision on this issue, that you should check all of your questions and reservations about vaccinating at the door and trust your physician, that is unless your physician also questions vaccines (or supports a delayed schedule), then he’s a quack.
Managing Editor's Note: We have no idea how Dr. Offit is getting away with his statement that regressive autism does not exist. In fact, The DSM-V revision pays close attention to regressive autism - and includes the following: During the ensuing discussion, it was pointed out that regression may be a more common feature of autism than was previously thought with some prospective studies indicating that a loss of skills is the rule rather than the exception. In regressive autism, the skills are lost in the second year of life, while in “early onset” autism, skills are lost in the first year of life. To deny the very children who now make up Dr. Offit's livelihood as an "autism expert" (sorry about the beverage you just snorted across your keyboard or Smart phone...) is one of Dr. Offit's more callous and disconnected statements to date. He has no concept of our children. They are merely arms and legs with which to alter an immune system for profit.
By Cathy Jameson
When you have autism, you are born with autism. There is no changing that…”-Dr. Paul Offit
After hearing that statement, it was important to repost this piece. May it be a reminder to those who haven’t gotten the memo, and for those who refuse to read it, that yes, regressive autism does exist.
This post is dedicated to my friends’ children who have regressed into autism.
I used to love the month of April. Spring. Flowers. Sunshine. Warmth. My birthday. Yes, April was always a fun time for me. Now, I really can’t wait for it to be over. The autism “awareness” that takes over, the “new” autism numbers, the blue lights, the ridiculous autism studies that raise no alarms but blame autism yet again just Mom (or Dad’s) fault. With the 2014 numbers now 1 in 68, I’m done with April, and I’m done with “awareness”.
We have half the month to still get through though. What’s a dedicated mom to do? Scream? Give up? Give in? Walk away? A few weeks still linger in the month that now seems to take the longest to end. I have few days left to avoid the blue light special some big organization, I mean business wants to shine in my eyes blinding me with awareness while attempting to deflect the truth. Yep, I am ready to usher April right out the front door because May is around the corner. And, you know what May means? Well, actually it means nothing.
Autism will still be here, numbers will still be high and people will still need services that are unattainable. When we flip our calendar page to May I’m sure it’ll be back to the regularly scheduled autism hum drum diagnosis that just happens to happen with no mention of vaccines being remotely part of the national crisis that autism has become. But, who am I to have any sort of opinion when I counter the autism awareness campaign asking for autism action instead? I’m just seen as one of those anti-vax nutcases that the media and pro-vaccine internet bots love to hate.
I don’t like to be so negative, but no day is a good day for just awareness. In order to shake the negativity that creeps in this time of year, I decided to create my own agenda to step up the autism “awareness” effort within my circle of friends and family. I posted my own “NOT born with it” campaign after viewing a video of children who were also NOT born with it. It’s was a beautiful tribute to hundreds of children who were developing typically but later received an autism diagnosis. Parents of these children concluded that many of their “NOT born with it” making a point to state that their children were adversely affected by their vaccines.
I wanted to showcase my child’s picture too to those who follow my son’s story personally. My campaign included photos as well with the idea was to share pictures of Ronan from birth to present day. In the baby pictures is a cheery, happy, chubby, absolutely adorable typical baby. With each additional picture one can clearly see that my son’s facial expression changed. His regression is documented in each picture as is the progression of parts of Ronan’s life that have him looking like a lifeless, distant, sensory defensive, neurologically challenged, dependent child. Because on some days, he is exactly that.
Why do this? To torture myself with the reminders with what I had, with what could have been or with what should have been? No. I did it for one reason: because Ronan was NOT born with it. Autism regression is real. It exists. It is something parents need to understand can happen.
As hard as it was to add picture after picture noting the physical changes while remembering the cognitive delays and stagnation, I created the picture timeline and commentary to say that I should have known more but didn’t. I did it to point out that much of what happened to Ronan could have been prevented. I also did it because I wanted people to know that when they discount vaccine injury, they discount my child. I posted it to friends and family praying that this never happens to another child again.
I know some people don’t want to admit that they know regression can happen because of vaccines. But it does. Here is one child’s autism regression seen in a series of pictures:
Check out that smile, the eye contact and the total cuteness.
NOT born with it.
One of my favorites.
NOT born with it.
Making smiley smiles and babbly babbles.
NOT born with it.
I love this picture. Look at the happy. Look at it!
NOT born with it.
Mommy’s got her Revolution on for you!
NOT born with it.
I was in the kitchen one afternoon searching through my emails when my oldest daughter walked in. She had just been outside on a gloriously sunny day with instructions to play until I come and get you. ‘Get back out there,’ I said while keeping my eyes locked on the internet. I needed the outside playtime to last hoping it would buy me some time to veg out, get some computer “work” done and to have a moment of silence from our constantly-busy schedule. ‘I have to use the bathroom,’ Fiona said while hurrying away.
Shaking my head at myself and the ever-growing list of things I needed to get done, I craned my neck and went back to searching for whatever it was I was looking for. I wanted to reply to an email before I was pulled in another direction. It’s nearly impossible for me to complete a full task in one sitting but I was determined to get this one done. Scratch that chance.
Fiona walked back by the kitchen as I had my hands hovering ready to type. “Mom,” she started. Ugh. Can’t I have any peace and quiet around here?! “Yes,” I answered as sweetly as I could. “Mom, when are you going to be done with all this autism stuff?”
Stabbed. Stabbed with guilt. My heart broken and my head hanging even lower, I raised it to look Fiona square in the eye and asked, “Why?” Fiona had her hand on the doorknob already and was about to jet back into the backyard. I didn’t want to be gruff or give her a long-winded, over her head answer so I asked her a question back. “Do you want me to stop reading about it?” Fiona looked at me with wide eyes, “NO!” she said emphatically. I went on, “Do you want me to stop writing about it?” “No, Mom. I just wanted to know when it’s going to be all done.” Fiona is eight. She’s only known her brother Ronan to be who he is with all his behaviors. She lives through the hours of therapy, the miles of driving, the pages of books, magazine and websites I read. She is very aware of the many things we do to make Ronan’s life easier so all of our lives are manageable. Fiona needed a quick, pat you on the back answer that promised only good things.
I took a breath and replied, “Oh, I guess I’ll be done when things get better for us, for Ronan and for other kids like him. It stinks that I have to do all this and I’m sorry it takes so much time. “Okay,” Fiona said. “Can you come outside? You said you would.” More stabbing pain in my heart. “I’ll be right there.”
The CDC announced that 1 in 68 children have autism at the end of March. Granted they have yet to count and include children under the age of 12, but still, 1 in 68 children? That’s a lot of kids!
1 in 68. That’s up from 1 in 88 from just two years ago. Many are expressing concern over that 30% increase. A lot of us are questioning the lack of urgency from our current Administration as no one from Obama’s office has reacted nor responded to the rising national autism numbers. You’d think that a disorder that robs a child of his communication skills, socialization skills and a host of other self-help skills would be a huge concern. But, we’ve heard nothing. No alarm bells. No improved plan of action. No removing committee head members responsible for billions of dollars wasted. No scrapping of what has obviously not worked to reduce a disorder that affects 1.2 million Americans. Nothing.
Why aren’t government officials, who should be actively responding to valid questions and concerns placed before them, continue to turn a blind eye on our nation’s future? Why are they dodging the obvious? Why don’t they see the reality that so many of us do? Does anyone care enough to really do something about the increased rate? Hello? Hello???
We get no response.
We hear no urgency from those who should. I still have questions though. So do a slew of people. So, I resorted to ask a Magic Eight Ball some of the questions I wished someone up there in the District would answer.
Magic Eight Ball, the autism rate has steadily increased over the last 30 years. Will the autism numbers ever go down?
Yeah. That’s what I thought. Bummer.
Magic Eight Ball, since not enough people in D.C. seem to really care to combat autism, is it going to continue to be up to the parents to get stuff done?
Let me embrace thee, sour adversity, for wise men say it is the wisest course.
It’s that time of year. We’ve flipped a calendar page to a new month: the month of April. The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode. From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me. While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me.
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.
Thirty days hath September, April, June and November…
A childhood poem has helped me plenty of times when it comes to remembering how many days each month contains. Something struck me as funny though as glanced at the calendar in preparation to turn the page to the month of April. Well, it’s not funny ha ha. Maybe different is a better word to use as I also look at what comes with that page turn: Autism Awareness Month. April has become an entire month devoted to informing the public that autism is here. Other disorders that block off 30-31 days of awareness are breast cancer (October), vaccine injury (also in October), ADHD (January) and Cancer (February). Does it strike anyone else as interesting that these disorders, many of which have ties to man-made or environmental triggers, have an entire month devoted to them? I only ask because a few genetic diseases and disorders get only one day out of 365 to be recognized. Those include Down Syndrome Day (March 21), Rare Disease Day (February 28), Cornelia de Lange Syndrome Awareness Day (second Saturday in May) and World Sickle Cell Day (June 19). I wonder why some man-made, environmentally-triggered disorders and conditions get a whole month.
With the new numbers recently announced that 1 in 68 children are diagnosed with the disorder, it’s clear that awareness didn’t do too much to reduce the rising rate of autism—unless reducing the rate that wasn’t the intent of the awareness campaign as some of us had thought. Awareness has a place, as does acceptance. But I question why some groups prefer to celebrate and to embrace autism. By suggesting that, I’d be curious if they are asking us to also celebrate and embrace autism’s debilitating and even fatal conditions. Those are what accompany my son’s autism diagnosis. Why would I celebrate a condition that came about from an overload of toxins? Why would I embrace that my child lost his ability to speak? Why would I rejoice in his lack of independent eating, dressing, bathing and bathrooming skills? And how on earth could I ever think that my child’s wandering is a gift? Not being able to talk, wearing a diaper at the age of 11 and being very aware that half of the autism wandering cases end in fatalities are unfortunate characteristics of autism we see. I do not find anything about those characteristics worthy of a celebration.
awareness: (noun) knowledge or perception of a situation or fact
action: (verb) the fact or process of doing something, typically to achieve an aim; a thing done; an act.
April is labeled Autism Awareness Month. When it comes to autism, with 1 in 68 children diagnosed by a potentially life-long disorder that affects one’s independence, communication and socialization skills that can also impact the neurological, digestive and sensory systems, awareness only does so much to help those affected. For some time now, activists have been asking for autism action instead.
Awareness is merely knowing. It lets someone watch the epidemic grow without having to do anything about it. Action gives someone options. It gives people the chance to get up and do something about autism. Autism happens every day of every month of every year. Awareness or action. Which will you choose?
If you choose action, consider picking one of the following things that can be done now, today, this month to assist someone affected by autism:
1 visit and get to know a family in your community that’s affected by autism
2 offer respite for a family
3 the siblings needs some time and space to themselves too--take the typical siblings out for the day
4 find out what autism books the parents are reading, and read the book with them
5 order the book, and donate it to the local library
6 autism parents read a lot--give the parents a book store gift card so they can continue to educate themselves on their child’s disorder
7 find out what equipment the child needs (communication device, therapy swing, chewies, etc) and help purchase it
8 if an item or piece of equipment is needed and is out of reach financially, start a fundraiser
9 learn what dietary restrictions the family has and read why that diet has helped
10 donate a bag of groceries to the family with safe foods for their child
11 learn how to make a meal family can eat and bring it to them
“Car manufacturer Toyota has agreed to pay a staggering $1.2 billion to avoid prosecution for covering up severe safety problems with “unintended acceleration,” according to court documents, and continuing to make cars with parts the FBI said Toyota “knew were deadly.”
A deferred prosecution agreement, filed today, forced Toyota to “admit” that it “misled U.S. consumers by concealing and making deceptive statements about two safety related issues affecting its vehicles, each of which caused a type of unintended acceleration.”
Toyota “put sales over safety and profit over principle,” according to FBI Assistant Director George Venizelos.”
Oh, boy, did this article make me see red. I remember watching the news when people were reporting that their cars were malfunctioning. I also remember the asinine claims that the auto manufacturers offered while trying to deflect that a legitimate problem existed. Instead of properly address the dangers Toyota drivers were facing, excuses were made and critical time was wasted. Several people lost their lives despite customer’s pleas to thoroughly investigate the issue. What Toyota did and how they handled this situation is inexcusable.
I couldn’t help but think of how eerily familiar the Toyota customers’ statements and troubles sounded. While reading the article I saw several comparisons of what Toyota drivers had to deal with what has also happened to the vaccine injured. One thing was not so familiar though. Justice was finally served to a set of customers who were terribly wronged. I can’t say the same thing has happened yet for many of us.
But, I can certainly see other comparisons similar to the unfortunate events Toyota customers faced.
“The disregard Toyota had for the safety of the public is outrageous,” Venizelos said.
When media reports arose of Toyota hiding defects, they emphatically denied what they knew was true, assuring consumers that their cars were safe and reliable… More than speeding cars or a major fine, the ultimate tragedy has been the unwitting consumers who died behind the wheel of Toyota vehicles.”
What’s been outrageous for us? That vaccines have been pushed on the public for decades with little to no regard toward how individuals handle being vaccinated. Clamping down and enforcing vaccine safety can’t happen when they’re sold as safe and effective though. I don’t know how they could be. Even when the government calls them unavoidably unsafe, and while each vaccine comes with an extensive list of negatives reactions, vaccines are sold with no liability. Too many double standards get in the way of taking care of vaccine consumers. Vaccines have a safety net. People questioning vaccines get run over instead of helped.
By Cathy Jameson
An honest mom’s response made late last week during an interview opened the doors to a circus frenzy typical of the mainstream media. If you’ve stayed up with vaccine and autism news since that comment aired then you’re already well aware of the lively conversations that have taken place on the internet about it.
A great number of people came out of the woodwork offering their opinion about vaccines and about Kristin Cavallari’s choice to not vaccinate. Some people left a comment or two in online forums while others cranked out a good 10,000 or more. Everyone had something to say. Or prove. Or demand. Or yell IN ALL CAPS. Quite a few parents who have children with documented vaccine injuries merely wanted to leave a heartfelt thanks while other people, many of whom appear to hail from a pro-vaccine stance, badgered those parents with malicious responses in reply.
Baiting parents and belittling them and their well-thought out opinions
became the new discussion. It wasn’t about Kristin anymore. The attack turned toward the parents who have wised up about vaccines. Moms were belittled. Their science was shot down. Parents were told their anti-vax choices were putting innocent people at risk. It never makes sense to argue that point because the majority of people in this country have the choice to vaccinate or not. It’s quite simple, really. If we parents don’t want to vaccinate, they don’t have to. That right is protected by law. But some people forget that little fact and would rather have an online hissy fit instead.
Even though I had several opportunities to say something as the story went viral, because I too am thankful Kristin’s knows that she has a choice in the matter, I kept out of the fray. I watched instead. Many times I wish I hadn’t. I am all for discussing and offering insight to others in a public forum, but there is no need to point fingers at moms who are vocal about a personal decision. But that happened repeatedly last week.
As the days went on, while the media did nothing to calm the drama they started, more people added to online conversations. What struck me as the most unfortunate after reading thread after thread after thread was that in all the comments, not one person chimed in saying,
Thanks for the info, everyone! Your incredibly heated discussions have offered me a significant amount of useful insight. It even helped me make the decision to vaccinate/to not vaccinate my child. Keep up that fantastic back-and-forth dialogue. I’m sure it’ll help someone else too!”
Nope. Not one.
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.
I don’t usually get my news from CNN but choose instead to read less liberal-minded media outlets. But I saw a link posted by a friend midweek from CNN that caught my eye. I popped over to the website to see what the story was all about. The headline read, “New York Times corrects article about '12 Years a Slave' -- 161 years later.
(CNN) – “It's a correction more than 160 years in the making.
In its Tuesday edition, The New York Times published a correction for an article that ran on January 20, 1853.
The newspaper has Hollywood and Twitter to thank for bringing the error to light….”
I wasn’t sure whether to laugh or cry.
That’s a long time for a mistake to finally be corrected.
And Hollywood and Twitter? You can’t get more social media than those two sources. But more on that later.
Back to the mistake.
In the almost ten years I’ve been in this community, I’ve seen a lot. I’ve seen, heard and read it all. From the ugly truth we’ve revealed to the flat out lies those in power have told, our findings and efforts have been scrutinized and demoralized. Often told we’re the ones who are mistaken, we’ve realized time and time again, by peeling the layers of propaganda, indoctrination and sleaze stemming from the media, that no, we’re not. The private entities and even government funded sources, whose mission is supposedly to aid the public, who benefit from mistruth, half-truths and plain old untruths who’ve got their facts wrong. We’ve tried to bring those to light, but when we share our breakthroughs, instead of appreciating them, we’re mocked and told to be quiet. Fortunately, even being mistreated as we have, it hasn’t stopped us from continuing to speak up for our children and the cause.
When the mainstream media sources right the wrongs they’ve flung our way (come on, a girl can dream, can’t she?), can you imagine what kind of corrections we’ll see published?
Consumer Reports magazine was a go-to resource for my parents when I was growing up. Cars, household appliances and electronic equipment, my parents relied on having that subscription to research big-dollar items they were preparing to purchase. I haven’t had the need to read or to buy my own subscription to Consumer Reports, so color me shocked and appalled when I stumbled upon a link for an article about vaccines on an autism listserv I belong.
When I read the article, my jaw dropped. I had no idea that Consumer Reports was in cahoots with, and apparently a mouthpiece for, the vaccine industry. Not only are they a mouthpiece, in other articles on their website they’re promoting exactly which vaccines they think certain groups need and discuss where to get them.
Last I checked, vaccines were not 100% free of problems. Too bad Consumer Reports hasn’t done as thorough a review of vaccines like they tend to do with other products. With how many vaccines have caused adverse reactions, a publicly shared consumer-based rating report would most certainly be beneficial.
For years now I’ve wonder if anyone has made a vaccine rating scale, similar to a scale that Consumer Reports uses. From what I remember when I read the magazine as a youngster, I recall that they did a good job showcasing all there was to know about a product. Testing products on a variety of features, readers relied on ratings of how well or how poorly the product did. Using red and black symbols with distinct shadings and markings correlating to a product’s performance, one could quickly assess the performance level while also note the pros and cons of what had been evaluated. Even as a child, looking at the charts I could quickly see which items were well made and which ones were less than desirable. We need something like that for vaccines, too.
Just like many items found on the pages in Consumers Report, vaccines are advertised and put on the market to be sold. They are products. Sure, the Vaccine Adverse Effect Reporting System (VAERS) provides some statistics for some vaccine products, but that is if the vaccine injury is believed and documented in the medical file, and if it is reported to VAERS by the medical provider. Unless someone is very familiar with vaccine injury, most people I talk to have never heard of VAERS.
I received an Amber Alert message last week on my mobile phone. It startled me as the message was accompanied with a loud, blaring alarm. I was parked at Ronan’s school waiting for him to be dismissed when this happened. I looked my phone as a text message popped up containing more information. My heart sank. A young girl was missing, and authorities were quickly on the move to find her.
My network sends these sort of messages out as needed, which I welcome. What better way to get the word out to the masses: Hey, citizens! Someone’s life is in danger. A child, a national treasure, someone who matters, and who makes a difference in the world, has been snatched. Keep your eyes open, and call the police ASAP if you have any information.
Fortunately, for this abducted child, the ordeal was over quickly. She was found safe and returned to her family. I imagine many hugs, huge sighs of relief and several high fives were shared by those who assisted in the girl’s rescue. It’s reassuring that a person’s life was worth the intense effort and extra manpower required to find her.
Being so quickly notified of this young girl’s endangerment got me thinking. What if there was something similar for our children? I, for one, would have preferred an ear-piercing alarm rather than the quiet, don’t-be-so-worried responses and the wait-it-out suggestions I received.
That’s how long our current president has been in office. A lot has happened in that time. Some people like the changes that have come under this administration while others do not. I guess taking the good with the bad is part of politics. But I’m getting tired of the bad. Something that I don’t like, is that in the last 1,856 days, autism hasn’t decreased. In fact, since inauguration day 2009, the autism rate has jumped from 1 in 166 to 1 in 50.
What does that mean? It means more families are affected by autism today than ever before. It means that more children are facing a life-long disorder that negatively impacts their future. Every day is a day to overcome or to learn to live without. Every day our children fight to overcome struggles while living without necessary skills that can make those struggles go away.
Autism. I naïvely thought I may get a break from it. I thought I might get some down time with the holiday on Monday. But on Monday, when others took time to celebrate, we simply carried on where we left off Sunday night. Presidents’ Day was a regular day. Ronan had school. He later had therapy. As the day continued, we stuck to his routine. As much as we’d like a day off from autism, I appreciate his routine. Ronan does too. The routine, as well as other strategies we’ve put in place, secure Ronan’s safety. They also keep our lives and his health needs balanced. It takes a great amount of work, but when I focus my energy on those strategies for Ronan, things do get done.
I haven’t yet figured out a personal strategy to reach those in Washington, D.C. I’d love to sit down with someone who has the authority to finally do something pro-active about the rising rate of autism. I’d love to share our story with them and have them witness what a regular day looks like for Ronan—it would include an ugly side of autism, the side that national television commercials dare not broadcast. What he lives, and what we must balance for him, is no picnic. It takes no days off, and it often leaves us working both day and night.
All I wanted to do on Thursday was vacuum. At 10pm, as I made my way to bed, I glanced over at the vacuum and shook my head. There is was. Sitting in the same spot. Untouched. All day. I hung my head and thought, Geez. Why can’t I get anything done around here? Trudging the rest of the way to my bedroom, I added ‘VACUUM THE HOUSE’ to my list of things to do Friday.
When I write my To Do lists, they tend to be a mile long. I give myself an entire week to accomplish the tasks though. Returning phone calls, scheduling appointments, sorting through paperwork and getting to the housework can’t be done in one day around here anyway. With Ronan’s school and therapy schedule, and with juggling my other kids’ schedules, I’m on the go and out of the house more often than not. Giving myself the entire week to check things off the list is more doable. I can plan better and can usually get everything done. This week, knowing we’d be hunkered down all day Thursday because of a winter storm, I looked forward to being home all day and to crossing things off my list. That included vacuuming.
But it didn’t happen. And I was hard on myself for not getting it done.
Dust bunnies and crumb bits under the table reminded me that my floors were screaming to be cleaned. I was upset at myself for letting something so trivial bring me down. But it was the one thing I wanted to do. Instead of being able to look at the day as a success and remembering what I had gotten done, I only saw what I didn’t do.
Midway through beating myself up about not getting this chore done, I stopped and laughed. I had made a phone call earlier in the day (which was on my list of things to do) to my parents. The topic: me focusing on and worrying about what Ronan can’t do; not on what he can.
More often than not, when I see what Ronan isn’t doing, I stumble and fall landing in a heap of tears as I go down. That happened around the same time I could have been vacuuming on Thursday but didn’t. It happened when I distracted myself choosing to read a story about a boy who’d recovered from autism. It happened when I also beat myself up for not being able to provide Ronan with what this other family can provide: an independent future.
Over the years I’ve seen several articles about the “anti-vaccine” movement and how terribly detrimental this groups’ beliefs are. Outspoken and fiercely determined, they’ll stop at nothing to get their point across.
I suppose that because I am in support of vaccine safety, and the fact that I share my son’s vaccine injury story whenever possible, it automatically clumps me in that ill-spoken group. I couldn’t be more proud.
Vaccines are known to cause injury. The anti-vaccine movement wasn’t the first to discover that fact. But because they, and I, say exactly that, we are blamed for giving vaccines a bad rap. Well, if not us, then whom?
And why is it so wrong for me to want to give another parent a head’s up about vaccines? We do that all the time with other products and services:
Them: Wow, nice shirt!
Me: Oh, thanks. Wal-Mart, only $5.97.
Them: What a deal!
Them: I’m looking for a new tablet for my kids. Which one do you like?
Me: We have an iPad 2. Ronan loves his. In fact, it’s been great tool for all my kids.
Them: Awesome, I’ll check it out!
Them: Hey, I heard the plumber you hired really screwed up your plumbing and you had to hire someone else.
Me: It was a nightmare! We had water e-v-e-r-y-w-h-e-r-e. Steer clear of XYZ Plumbing. They’re unprofessional, and they’ll rip you off!
Them: Good to know…
Them: I want to read up on vaccines the doctor says my kids have to have. I may want to do some of them, but I know they don’t actually “need” them. What do you suggest?
Me: Heavy subject, huh? Well, if I had to do it all over again, I’d ask more questions and do lots more reading. I’d look up side effects, research alternate ways to prevent or treat diseases and also factor in my family’s medical history. People have a lot to think about, as you’ll discover, but remember you usually have a choice to get them or not. Don’t forget to look up vaccine exemptions for your state. No one, especially your doctor, should bully you into them.
Them: I guess I have some reading to do. The next appointment is in two weeks. I’ll get started today. Thanks!
Easily I could talk and talk and talk, and quote and cite and point out hundreds of sources that support the suggestions I made in that last conversations. Depending on the person and their level of vaccine and health knowledge, I am careful in how much I share so as not to overwhelm them. There really is a lot to know and also to consider.
That type of conversation sounds harmless, right?
When it comes to vaccines, I’ve been informed that what I say is untrue. I’ve been told to watch what I say and how I say it. I’ve also been told that my information is not just wrong, but dead wrong. Not only that, but I’ve been accused of endangering the lives of others because of what I believe. Unless what I say, believe or write comes straight from a medical textbook, some people prefer I just shut up.
Ronan loves electronic equipment. I can’t say exactly when he was drawn to them, but I know it goes back a few years. From hitting the same button on one toy making it light up over and over and over and over again soon after the negative effects of his vaccine injury took over his development, to choosing to continuously play songs on a playlist uploaded to his iPad, Ronan is content to scroll, tilt, swipe, tap and click.
Ronan’s got access to the Wii, xBox, iPad, iPod, DVDs and an old school VHS machine. As much as he’d like to, he doesn’t use all of those electronic devices at once. Over time, and with guidance, Ronan’s love of electronics has actually helped us introduce useful skills: understanding that he has to share with his siblings as they play a Wii game while he waits for his turn; finding a favorite song to calm him down after his behavior has escalated; practicing sight word recognition with spelling and reading apps. But, if I’m not paying attention to how much time Ronan’s had with some of these devices, he will easily isolate himself with them. That leads to turning functional leisure time into a chance to perseverate again. We’d rather he use the devices as they were intended and also hoped he’d use the ones with typing and speech features to tell us what he knows or needs.
With how technology has opened many an opportunity for other children with severe expressive speech disorders, I’ve gobbled up every success story I could find on using assisted technology devices. I was floored hearing Jeremy’s graduation speech, I was encouraged after reading Schuyler’s Monster and I am delighted to be able to follow Carly Fleischmann’s story on her Facebook page. Ronan’s not yet ready to give a full speech yet, but he’s increased his desire to tell us what he needs or wants.
We had an assistive communication device a few years ago, but Ronan wasn’t making a good connection with it. Then it needed repairs. We’d looked at replacing it with something ese like the GoTalk or Neo. Trying to save money while raising non-verbal child with the intense needs Ronan has is not always an easy task. So, we thought some more. Then, we had a light bulb moment: why buy something when we have something else?
We happened to have an iPad and an iPod and went back to attempting to utilize speech apps with Ronan. Over the years, we’ve tried using them. Some were easy to use while others were not. But because we’d already introduced other features on the iPad and iPod (like games and being able to access youtube) the speech apps we downloaded were less as exciting. I tried to hide them, but Ronan knew they were still there. He was more interested in playing than recognizing that his typing and tapping skills could open more doors.
The more we tried the speech apps, struggles, both his and mine, increased. So did his possessiveness over the devices.
Since we were having little success using the iPad and the iPod for communication, it was time to brainstorm again. After getting the book, Reading by the Colors by Helen Irlen www.irlen.com I had an idea.
I caught the flu two weekends ago. I survived the flu without getting a flu shot. After taking an extra week to fully recover from the aches, pains, fever, congestion and general malaise, I can tell you all about it.
Before I got sick I had been feeling a little tired for a few days. But raising five kids, one of whom has a severe vaccine injury, leads to exhaustion quite frequently. I figured I’d get through whatever was making me drag my feet once our schedule lightened up a bit. Just in case I was coming down with something, though, I made sure to get to bed a little bit earlier and upped some supplements known to boost the immune system.
Before I go into more of the details, let me back up a bit. Not long before I started to feel sluggish I saw another big stink being made about getting the flu shot. Citing the CDC’s over-used scare tactic of “36,000 flu deaths per year” statistic, even though “…[the] CDC does not know exactly how many people die from seasonal flu each year…”, people like me, who hadn’t yet gotten a flu shot, were being told they had just about two more weeks to get one for it to be effective. With how advertising for this particular shot if hyped from September through May, I wasn’t aware that there was an expiration date of sorts for its effectiveness (not that I was going to run out and get “the damn vaccine” mind you).
Ironically, the day I got sick was when the media warmed those two weeks were up. No matter. I was ready.
I would take the flu standing up.
Managing Editor's Note: Yesterday a news alert came in - the remains found in NY had been positively identified as Avonte Oquendo, missing 14 year old with autism who ran out of his school unsupervised (but not unseen) by staff. We've been praying for his return since October 4, when he vanished into thin air - not an easy feat in congested Queens, NY. Most of us whispered under our breath, "Water, go to the water, he went to the water." Well, today we have his return - not what we wanted - but as a Mother, I think there must be some comfort in being able to bury your child and know you can still watch over him, even in death. To the Oquendo family, our heartfelt condolences. There but for the grace of God and a stroke of luck go most of us and our precious children. RIP, Avonte. Love, Kim Send condolence cards to:
The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
New York, NY 10107
By Cathy Jameson
Last week, worry gripped my heart as I read that body parts discovered off the shore of the East River appeared to match that of a missing NYC teenager. Missing since October 4, 2013, Avonte Oquendo wandered from his school. Accusations and assumptions about how he was able to leave unsupervised are still being investigated. Answers from that investigation may take time, but after months of wondering where Avonte wandered can finally be answered. Several days after the grim discovery of bones and some clothing items, DNA positively identified the remains as 14-year old Avonte. Words cannot express how sad I am for his family.
As the mother of a child with autism who is prone to wander, the possibility of a fatal outcome because of wandering is never far from my mind. Ronan has gotten away from us before, but has been recovered quickly and with a far less search and rescue endeavor as Avonte’s search required. Because I know the fear that comes with this sort of situation, each time I hear stories of children with autism wandering, I try to pray. For month, I prayed for Avonte and his family as did many of us. My prayers changed Wednesday. Tears and sadness accompanied them. The more overcome I was, I stopped praying. I just couldn’t say any. The reality of autism and of this devastating situation has become far too common and more than I could bear.
Autism affects a great many. Autism can change a life, and sometimes in a way that is anything but positive. Autism and wandering is not uncommon. Autism is difficult, costly and consuming. Autism can bring a family to its knees in a moment’s notice. And what was confirmed again this week, autism can be deadly.
Today autism affects 1 in 50. Odds are that more families will find themselves closer to an autism diagnosis today than yesterday. Today doesn’t sound too promising, does it?
Several times in his now famous speech, Martin Luther King, Jr. used the word today:
“I am happy to join with you today in what will go down in history…
…a great American, in whose symbolic shadow we stand today…
…we have come here today to dramatize a shameful condition…
It is obvious today that America has defaulted on this promissory note …
…as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny…
I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream.
I have a dream today.
I have a dream today.”
I have a dream too. But my dream is for tomorrow.
As far as autism is concerned and how it affects my son, today breeds dread and frustration. It capitalizes on my fears. The worry I have about autism and for my son keeps a tight grip on me. It strangulates my thoughts and shrouds my thinking.
Afraid of what isn’t being done for Ronan and for a great many other children, today brings no solace, just more anxiety. Looking outside of my own home, today doesn’t look so good in other places either. Newspaper headlines in America promote ineffective flu shots as our best defense against a temporary sickness. They sing praises for immature celebrities’ behavior while neglecting to address a growing national crisis. Headlines scream Look here! Look there! But just don’t look at autism. Look the other way instead.
I’ve mentioned before that several times throughout the year people contact me. They either want to find out more of Ronan’s story or they have some questions about vaccines. I’m usually quite happy to share what’s happened to Ronan as well as offer my thoughts on the current vaccine schedule. I’m not so happy anymore.
Hey! Glad I caught you. I’m going to talk to my doctor about getting some of the shots. Don’t worry, not all of them, just the ones he says Jackie needs which means out of the four for today’s visit, so he’ll only get three. I’ll let you know how it goes!
Please don’t. I beg you.
I hate to bug you because of all that you have going on, but can you tell me again what it means when you get a fever and a full-body rash after a vaccine? I can send you a picture of it. Lily’s been misssserable since her two-year old check-up. Oh, do you know how much Tylenol I should give? I can’t remember what the doc told me to give her.
Ohmygosh, no. And wait. They’re still saying to give Tylenol? Are you kidding me?
Hey, Cathy, I have been on the fence about vaccines. I spoke to my doctor about them and she says vaccines are a necessary evil and I shouldn’t think too much about them…
A necessary evil?! You’re gonna buy that?
Come on, moms. Have you forgotten what’s necessary – food, clothing, shelter? As parents we obviously take those basics a step further. We strive to provide proper nutrition and a clean, caring, positive environment. We create a bond with our children. We help stimulate their minds and foster their growth. When those basic necessities are in place, baring major medical issues, moms have most of what they need at their fingertips. Kids grow. They thrive. They hit their milestones. Life, as nature intended, has a chance. Why complicate things by adding ‘necessary evils’, and why so many at once over such a short period of time?
I agree that ‘necessary evils’ are evil, but I refuse to think that they are necessary. Necessarey doesn’t leave a destructive trail contributing to the annihilation of children’s health over several generations like vaccines have. The fragility of our children’s health today is a reflection of that destruction. Look at the national rates of childhood obesity, allergies, asthma and autism and how they’ve drastically risen as more necessary evils among other “preventative measures” have been added to our food and our environment. Instead of preventing illnesses, necessary evils have made once healthy children turn into sick kids, and has turned sick kids into chronically ill adults. Sadly, the wave of neurologically sensitive individuals isn’t going to end any time soon. It can’t when necessary evils are still being glamorized, promoted and forced upon the most fragile of our population and when ill-informed moms run to parents like me for guidance.
Children today are being harmed in the name of ‘healthcare’. Some parents unknowingly submit to that. Other parents find out long after it’s happened. By then, though, it’s too little too late. Their children’s health already jeopardize and their future compromised. Influenced by necessary evils instead of common sense, life becomes more difficult than it had to be. Necessary evils are the greed, the manipulation and the lies of the industry. They add to the manipulation of the situation. They cover up the fabrications that trickle down from the top. They attempt to water down the truth. Necessary evils can do something more sinister; they can make moms feel like they have no right to doubt, to question or to think.
When did it become okay for moms, and parents in general, to stop thinking? Our nation’s founders prided themselves on forward thinking, on fighting to protect their rights and on revolutionizing the way they wanted and needed things to be done. They knew it was going to take work. They knew it wasn’t going to be easy. They were committed to see things through, and they acted on what was important to them to help preserve their future—their children. Our children’s futures are important and worthy of being protected too.
I listen to quite a bit of music. It accompanies me in the car and while I’m home. It’s almost always on when I write. Music gets me motivated, inspires me and relieves some of the anguish and anger I sometimes feel. Studies have shown that music can help lower stress, improve memory and reduce physical pain and lowering anxiety. It also has had a positive effect for those who suffer with depression, seizures and attention issues. I’ve always appreciated music, and I’m glad to hear that it offers solace to those who have a difficult medical diagnosis.
What does this have to do with autism? I’m sure some of the conditions our children have can benefit from music including through Music Therapy. I know that my son is calmer when he’s got his favorite songs playing in the background. Ronan enjoys it when I sing to him too. Sometimes I sing his favorite nursery rhymes while other times I make up silly lyrics as I go. He stays engaged with me longer when I’m singing, and I relish every moment we have together.
When I’ve got my own music on, I find the lyrics of the songs I tune into very suiting for where I am in life. Songs I particularly like, and could easily refer to as my theme songs, are Journey’s Don’t Stop Believing and Muse’s Uprising. I’ve been known to crank either one of those songs and lose myself in the words (while dancing in my kitchen). My kids love to hear these particular songs, Ronan included. When they hear them, they know that Mommy’s gearing up to get some important things done.
My kids have a bit of the music bug in them, but I never realized how much music has touched Ronan’s siblings until just a few weeks ago. That’s when my typical son said he wanted to sing the song Sara Bareilles’ Brave to Ronan. How we’d love it if words would simply just fall out of Ronan’s mouth.
Ronan has a song he chooses to listen to every now and then, too. He plays Twenty One by the Cranberries on his iPad. He listens to this line of the song, “Leave me alone, leave me alone, leave me alone,” over and over again several times and for a few days in a row. It makes me sad to hear him replay that part of the song. Not every day is an easy day for that kid, though, so I give him the space and time he needs knowing when he’s ready he’ll invite me back in. When he invites me back in, the music choices we both pick have more upbeat and encouraging lyrics.
The songs I’ve been playing these last few weeks aren’t my usual get-up-and-dance tunes. They have more of a dark undertone. Like Ronan, I go through phases wishing I could tell people to leave me alone. Part of it is because someone told me recently that I sounded kind of angry about how things have gone for Ronan. Well, I am kind of angry. He’s had to endure a heck of a lot for a long time now. The kid works his butt off making gains at a fraction of the pace that typical kids. I don’t like the position he’s in nor how he got there. I don’t like how hard this is for him or for me for that matter. I hate that Ronan’s childhood has been destroyed and how his future doesn’t look so bright at the pace we’re going. I’m allowed to feel upset and would expect to be given the chance to say so even if I’ve said it once or twice already. I don’t spout anger without reason. I offer it as a hard lesson learned and as a warning. Call it righteous anger or just spitting mad; I say what needs to be said. And then I play some music hoping to let go of the negative energy.
I found this note in a pile of papers in my office I needed to sort through and file. It was a prayer request written last Christmas by Ronan’s very devoted younger brother, Little Buddy.
That request is something Little Buddy has added daily to his prayers and for years now. He knows it would take a miracle for Ronan to talk because of what has happened to his big brother. It doesn’t stop Little Buddy from saying that prayer every morning as he starts his day, at school with hs classmattes, and again every night as he ends the day.
I welled up when that note slipped out of the pile of bills, EOBs and importnant school papers. My heart ached but was also bursting with pride as I read Little Buddy’s words. I haven’t been feeling my usually hopefully ever after self lately, and reading that little note added a few more tears than I expected.
I don’t like these emotions, but at least I recognize them and can start to work through them. I put some of the sadness on hold yesterday because we had some celebrating to do. Yesterday, Ronan turned 11. Since Little Buddy is always kind and generous toward Ronan, I asked him to help me with this week’s post. He was thrilled to be asked to share with you a few things about his big brother. Here is a conversation he and I had on Ronan’s birthday:
Cat: Tell us about Ronan.
Little Buddy: Ronan is my 11-year old brother.
Cat: What do you think he will wish for on his birthday?
LB: To talk.
Cat: What do you think he’d say to you today if he could talk? Go get me a S’mores cookie…cuz I love ‘em!
Cat: What would you want Ronan to say?
LB: Anything, I would want hear him say anything. I’d cry no matter what he says.
Cat: Tell us what Ronan can do:
LB: He can spell a lot of words. He can read. He can say a few, but only a few, like amen, Daddy, Mommy, again, yum. He will probably need more words when he grows up.
Cat: What does Ronan like?
LB: He likes to be tickled by Daddy. He likes zerberts on his belly.
Cat: Tell us what he doesn’t like
Little Buddy: Ronan doesn’t like when he doesn’t have his ipad. He doesn’t like the doctor’s office either. He always makes the Sign of the Cross when he hears the word ‘doctor’, so we spell it out or whisper it if he’s near.
Cat: What makes Ronan special?
LB: He’s my brother and he’s a lot of fun. I like being like the “older” brother even though I’m only 9 and a half and he’s eleven. I like it because it’s fun to have a younger brother and it’s better for Ronan to have a big brother helper.
This post originally ran in December 2011. I wanted to rerun this piece with some updates after reading some recent autism news that discussed an infant eye gaze study: “In a study published Wednesday, researchers using eye-tracking technology found that children who were found to have autism at age 3 looked less at people’s eyes when they were babies than children who did not develop autism. But contrary to what the researchers expected, the difference was not apparent at birth. It emerged in the next few months and autism experts said that might suggest a window during which the progression toward autism can be halted or slowed.”
Funny that they state, “…the difference [in eye gaze] was not apparent at birth. It emerged in the next few months…” They make the very same correlation many of us have reported: our child was healthy at birth…but something happened over the next few months.
Hmmm, I wonder what typically happens over those next few months?
*cough* vaccines *cough*
While I’m happy that autism research is being done, it’s too bad that some of the money used on this study, and the high tech gadgetry it required, couldn’t have been transferred to the vaccinated vs. unvaccinated study we’ve asked to be conducted.
No One seems to want to get that study underway...
If you read the mainstream news the message is still the same: No One knows why the dramatic rise in autism is happening. They should just ask Anne Dachel or some of my friends. We’d be able to fill them in. We’d cut to the chase and say exactly what we believe causes autism. But, No One wants to really listen to us and we continue to be ignored. We’ll still see a continuation of these types of studies being reported in the news because No One really knows why there’s such a rise in autism. November 2011 saw not one but two stories come out on causes of autism:
- Autism is linked to the changing role of women in society
- Autism is linked to clever parents
Before you walk away from the computer in disbelief, those two causes don’t sound too far- fetched when compared to the other list of other reasons and causes being circulated. Rest assured that real research dollars were spent on these studies which means some sort of official entity blessed the time spent to dig up these details. Causes of autism have been linked:
- to college-educated parents
- to older fathers
- to older mothers
- to big-boobed women
- to cold/distant mothers
- to how close to the highway one lives
- to prenatal ultrasound
- to newborn jaundice
- to low birth weight
- to Tylenol use after vaccinations
- to larger head size
- to watching too much television
That’s quite a list of causes, don’t you think! I’m not sure who benefited besides some of us parents getting a good chuckle while reading “the latest” from the research world. The list hits upon men, women, educational status, goes back to berate the women, peeks at baby’s development but forgets something oh so common. While some genetics can play a role in an autism diagnosis I’m pretty sure news sources and researchers forgot that yes indeed, autism is a man-made epidemic. That means something that someone made for kids is now doing damage to those kids.
Side effects and vaccines. That was the topic of last week’s Sunday post "What every Mom should know." It was more of an introductory post, really. Much more information can and should be shared regarding vaccine side effects. As necessary it is to expand on that information, today’s post isn’t going to be a continuation of the medical side effects that I’d touched on last week. So, I won’t be listing every single vaccine on the market.
I won’t post every single side effect of each of those vaccines starting with the mild to the moderate and then the severe.
I won’t prove how utterly dangerous vaccines and their side effects can be.
I also won’t share that $2.47 billion has been awarded by the US government to those who’ve experienced a vaccine injury or death.
I won’t mention that from swelling at the sight of inject, to being diagnosed with autism, to dying as the result of a vaccination, side effects and adverse reactions demonstrate that vaccines truly are unavoidably unsafe.
Nope. I’ll save all that for another day.
Instead, today’s post is going to focus on someone else: you.
So, let’s begin.
You, who after witnessing vaccine side effects firsthand in a loved one, have been more than willing to tell others that some vaccines aren’t worth it. Their physical pain and your emotional involvement is a lot to endure. As the vaccine injured learns to live with their side effects and their altered life plans, so have you. Side effects bog down. They deny advancement. They steal hope and destroy healing.
But those side effects won’t be found on a package insert.
They aren’t included in the fine print of a slick magazine advertisement.
They also don’t need to be disclosed or legally reported by the doctor, nurse or medical technician either.
Similar in ranking, the side effects that afflict a caregiver can be mild, moderate and severe. They can be painful, and they most certainly can last over a great deal of time.
Now, in sharing the side effects that a caregiver goes through is in no way meant to detract from the serious physical nature of the vaccine injury. But, I think it’s important to talk about the caregiver’s as well because those side effects do exist. Because side effects can cause delay. Because they can affect someone physically, emotionally, financially while reducing their abilities. And, like the actual vaccine side effect, the caregiver’s life can change, and does change, life forever. I know this because I am caregiver to a child with a severe vaccine injury.
Ronan’s side effects from his vaccines have lasted for years. For the most part, I feel like I have a handle on what those are and how to best manage them. But for my own? The side effects affect how I live and how I care for Ronan.
Take Ronan’s seizures, for instance. They’ve increased steadily over the last few months. As each seizure happened I began what felt like a post-traumatic stressful roller coaster ride of emotion. Knowing how seizures affect Ronan and how desperately I wish he didn’t have them, I went from spurts of sadness to feeling waves of depression.
For weeks I could not shake the extra negativity and the worry I had for my child, his situation and his future. Weeks previously, when things were going well, I had less worry and more of a can-do spirit. Triggers, like Ronan’s seizures, bring stresses to the surface. The more triggers I face, the less effective of a caregiver I feel I become.
I think many mothers go through these emotions, but having to juggle the additional medical and behavior issues, as well as my own unpredictable emotions, adds a great burden to an already heavy load. It’s no wonder that when Ronan’s health declines, when school days are tough, when negative behaviors pepper our once successful schedule, the more visible my caregiver side effects are.
Mild side effects, which can include emotions and also lead to certain behaviors, can be:
For the last few weeks most of my posts here have been about vaccines and vaccine safety. Some of you may be missing my usual hopefully-ever-after writing, but vaccines have been bugging me lately. When that happens, I don’t feel very hopeful or very happy.
No matter what I’m reading–a magazine, a mainstream newspaper, or a blog, I can’t escape mention of vaccines these days. Sure, I subscribe to a few places that typically highlight only vaccine news, but I’m reading about them in other places, and the news isn’t looking good.
I can’t shake the disappointment I feel after seeing these stories. Most of what I’ve read lauds vaccines claiming that they are safe despite their side effects, and that they’ll work if we give them a chance, and what’s the big deal, anyway? Oh, when they don’t work? Well, we’re sorry, let’s move on. I know I speak for many when I say that that kind of news reporting is depressing and unacceptable.
Can you imagine if vaccine news stories across the mainstream channels would actually reveal all there is to know about the vaccine--including the bad stuff? I’m talking about the side effects, the lingering pain and the secondary illnesses that turn into everyday struggles after receiving a vaccination. That information should be discussed more openly in the exam room and in the news but hardly seems to be. I know this because I’ve been there in that exam room before and never got that sort of information. People I speak to today about their vaccine encounters say the same thing. When I hear from them, as they reach out to me for help, it’s clear that the right things are still not being said: “When do I worry about this rash? The doctor didn’t tell me anything!” “What? I never knew you can still get the chickenpox after getting the chickenpox vaccine!” “What should I do about this fever? It’s so high, and it won’t go down!”
Side effects aren’t being mentioned in the articles I’ve viewed lately, and the moms I run into are still unaware of them, so it’s time to expose them for what they are. Side effects are dangerous. Side effects happen. They can, and will, a last long after a vaccine is administered.
Now, some people may be aware of side effects if they’ve done any kind of basic research. The CDC tells us that side effects can be mild, moderate or severe. Basic information might also come from a medical provider who takes the time to have a conversation about them. Information may also come from the VIS (Vaccine Information Sheet). This handout, usually a two-sided piece of paper, is required by law to be given to someone receiving certain vaccines.
By Cathy Jameson
This picture of my boys was taken a year ago. Ronan, in the green sweatshirt, stopped moving long enough to sit down and look straight into the camera. Sitting proudly next to Ronan is his younger brother, Little Buddy. Little Buddy, who was also injured by his vaccines but has recovered, plays more of a big brother role than Ronan is capable.
Little Buddy prays daily for Ronan hoping he too will be free of his vaccine injury. He hopes that Ronan will be healed so that he can talk and so that they can play together. With a heart bursting with pride, love and devotion, Little Buddy has enlisted his classmates to pray also. Together, they offer special intentions for Ronan’s health and healing. I need to take a lesson in Little Buddy’s devotion and perseverance because lately, I am having a hard time seeing too many positives in Ronan’s situation.
I certainly have some things to be thankful for today, but I would be remiss if I didn’t admit that I feel much more worry than thanks. We’ve had to handle some uncomfortable issues lately: wandering, an increase in seizures, stagnation of skills and negative behavioral concerns.
I have been less than thankful for the many reminders of what’s making Ronan’s life more difficult. Those difficulties, and the reality of Ronan’s vaccine injury and autism diagnosis, have me riding an emotional roller coaster. Time heals all wounds, though, right?
If I give it a few days…
If I shake the worry while looking for a bright side…
If I let some of the nagging go…
If I hope for the best…
My husband and I rearranged Ronan’s school, therapy and medical appointments as well as our own personal schedules in order for me to be available to go to the upcoming Congressional Hearing. This Hearing was to address the Vaccine Injury Compensation Program (VICP), its history as well as the waste, fraud and abuse stemming from that program. Having taken part in the VICP on behalf of my son, it was important for me to make plans to be at that Hearing.
Since that announcement of the cancellation, in national news about vaccines I read that a healthy young man, who was battling for his life after getting the flu shot, died this week. I also read that the US is scampering to get a hold of an unapproved vaccine to students at an Ivy League college. Personally, since the Hearing was cancelled, I learned that a friend’s mom landed in the hospital after getting a flu shot and that another friend’s son reacted negatively to a 3-in-1 vaccine.
While the personal stories may not be earthshattering news for many, all of those stories frighten me. They frighten me because another life has been senselessly lost, another life is in jeopardy and another person’s health has been changed forever. Where are they to go when they link their ill health, that vaccine injury, or worse, death? They’ll discover the VICP and how it proposes to help. They’ll think they have answers, assistance and maybe some hope. Too bad that the VICP is so broken.
I know I am not the only one feeling worry, sadness or disappointment. Many of us in the community were depending on some good news to finally come. So, while we wait to get word about when the VICP Hearing will be rescheduled, because you know that people in our community are actively working to make that happen, I’d ask you to do a few things. No need to sit and wallow in this disappointment, right? It’s time for some action.
First, I want to ask you to review the video of the November 29, 2012 Hearing. I think it’s important to do this because those people we heard last year are some of the same ones we’ll expect answers from when the VICP is rescheduled.
You’ll recall that the Hearing last year saw a great many discussions about autism, including the role that childhood vaccines played in that diagnosis. You’ll also remember that we saw Chairman Issa, who is also slated to oversee the VICP Hearing, lead a long-overdue discussion about what else needs to be done about autism. Listen to everything that was revealed. Think about how you felt when those Representatives’ words tumbled out of their mouths. Keep those words in mind as you get ready for the next step.
Committee on Oversight and Government Reform
2157 Rayburn House Office Building,
Washington, DC 20515
Phone: (202) 225-5074 Fax: (202) 225-3974
By Cathy Jameson
Upon reading the Canary Party’s announcement that the Congressional Hearing, which was scheduled to discuss the Vaccine Injury Compensation Program, was cancelled with no postponed date announced, I penned Mr. Issa, Chairman of The Oversight and Government Reform Committee, this note.
Dear Mr. Issa,
This is Ronan. This is Ronan post seizure. His seizure were brought on by vaccine injury. Today, his seizures are gaining in duration, frequency and intensity. I fear what they will do to his health and possibly his life.
Ronan is my ten-year old son. He was injured by his childhood vaccines. Thankfully we learned the devastating effects of vaccines when we did, but it wasn't before serious harm was done. Ronan lost his voice, lost skills he was building and was left with seizures, severe developmental delays and other secondary illnesses that physically drain and affect his energy.
When we discovered that the vaccines were responsible for the damage done, we enrolled in the Vaccine Injury Compensation Program. We had high hopes that the program would recognize what was so apparent--that they did something to my beautiful, healthy baby boy.
We fought for eight years, EIGHT YEARS. We jumped through every bureaucratic hoop. We provided documentation after documentations. Medical records, expert testimony and more. We believed in the system, but when a system was created by the government for the government's gain, of course people like my son can never get what was supposedly promised them. After devoting years to this cause, Ronan's case was dismissed in July 2013. Disappointed doesn't even begin to describe how we felt when we learned his case could go no further.
Fast forward to now. In two weeks I was planning on being at the Congressional Hearing that would discuss the Vaccine Injury Compensation Program. I already know about the major flaws that program has but remained hopeful that your committee was going to finally call them out on the flaws, the waste, the fraud and the abuse. How incredibly disappointing it was to receive news that the Hearing was cancelled with no new date announced.
Don't you think enough time has gone by?
Don't you realize the dangers lurking if the VICP is not remedied?
By Cathy Jameson
For years we’ve been bombarded with multimillion dollar advertisements promoting the HPV vaccine known as Gardasil. Commercial after commercial, whole page magazine ads and posters at subway stations sent more fear than facts to the public about the human papilloma virus (HPV) and its role in cervical cancer.
Even though I do not care for this particular vaccine, I make an effort to stay updated whenever news comes out about it. I do this because my oldest falls into the age category for which the vaccine is recommended. The vaccine, originally designed and heavily pushed on the teenage population, can be administered as early as 9-years old. After a rather hasty vaccine “safety” study period, the 3-series Gardasil vaccine became available in 2006. Cervarix, also marketed as a cervical cancer prevention vaccine, debuted in 2009 is an alternate to Gardasil.
Like every vaccine that came before these two, reactions post-vaccination were documented and reported in the VAERS database (Vaccine Adverse Event Reporting System). Currently, almost 32,000 adverse reactions have been reported as well as 144 deaths. Despite growing concerns about Gardasil and Cerivax, and about the increasingly serious and fatal reactions young girls have had from them, it was suggested in 2011 that boys as young as 11-years old also receive the 3-shot series.
During the campaign to sell, sell, sell this product, we were told that the HPV vaccine would be an answer—an answer to help prevent cervical cancer. We were told those who got the vaccine would be One Less: One Less to chance it. One Less to catch the disease. One Less cancer victim. We were also told that 3 doses were recommended for the series to be effective. Reports are now saying 3 vaccines may be two too many though.
Good news for less jabs, right?
What, then, should we tell the girls, and now possibly the boys, who got sick from their 2nd dose of the vaccine? Who tells them, “Oops, sorry.”