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.”
Ring. Ring. Of all days.
Ronan was up at some ridiculous hour the last two mornings in a row. All I wanted was some peace, a whole lot of sleep and for it to please come soon. I’d just returned home from dropping off my children at school. If I was going to survive a full day, and another possible night of no sleep due to Ronan’s frequent night waking, I had to grab that quiet moment now.
Crawling back into bed praying for rest in the form of a nap, I groaned. I usually turn the ringer off if I get the chance to go back to bed. Obviously I was too tired to remember to do that this time.
I recognized the phone number and knew I couldn’t ignore the call. Forcing myself to perk up, I hoped I didn’t sound like the exhausted half-human I felt I was.
“Mrs. Jameson?” a woman on the other end asked.
“Yes, this is.”
“This is the nurse at Ronan’s school.” Drat.
I was wide awake. The nurse continued, “I was looking through Ronan’s files, and I see that he did not get the varicella vaccine.”
I replied, “Yeeesss?”
The nurse continued, “Well, I need to tell you something.”
Ugh. I was sitting up in bed. Naptime over. My mind raced as I reached for my imaginary mother warrior boxing gloves thinking, You wanna talk vaccines? Bring it, sista.
“I’m listening,” I tried to say casually.
“Well, we have two cases of chicken pox here at school. Ronan didn’t get that shot, so if you think he might be exposed you can come pick him up.”
I almost laughed. How quickly I put myself in the vaccine boxing ring ready to put my dukes up! I waited a second before responding. “Oh, wow. Thanks for calling. You know what though? Ronan had the chicken pox. He caught it naturally a few years ago. So….he doesn’t need the shot, and he should be fine.” (Please, oh please, oh p-l-e-a-s-e say that he can stay at school today because I really need to take a nap.)
The nurse said, “Oh, wait. I think you did tell me that. Yes, now I remember. Okay, then. It’s been a really busy morning.” I thought, I bet it has! Chicken pox is no picnic. I was guessing she was in damage control mode rifling through hundreds of other kids’ files trying to see who was and wasn’t vaccinated, and who might be susceptible to catching the chicken pox.
We're happy to report that you can now download Autism File Magazine free. Simply click THIS LINK to start your subscription.
The Autism File, the first magazine ever published devoted exclusively to Autism Spectrum Disorders, announced today that the upcoming August/September issue will mark the magazine’s entry into the world of digital publishing.
Since the first issue of the magazine appeared in 1999, the Autism File has been described by readers as a “lifeline”. “Thanks to the most knowledgeable experts and experienced parents from around the world, we’re able to present cutting-edge content and critically needed support to families affected by autism,” said the magazine’s founder and Editor-in-Chief, Polly Tommey. “The new digital format will allow parents and professionals—no matter where they live—to have immediate access to the crucial information provided by our contributors.”
In addition to the magazine’s bi-monthly publication, which will be available as a free download six times per year, the Autism File’s team of editors and writers will provide a weekly update focusing on relevant topics including nutrition, biomedical treatments, sensory issues, advocacy, and safety. “There is an overwhelming number of concerns that autism families face each and every day, and often on incredibly tight budgets,” said Polly. “Our readers will now have the latest innovations and strategies for all aspects of living with autism right at their fingertips, and at no cost.”
Our own Cathy Jameson is this issue's cover girl - along with her handsome son Ronan. once you have subscribed, (see link above) you can read Cathy's article titled Navigating the System to learn about the IEP process.
By Cathy Jameson
The most terrifying night of my life was the night my son Ronan wandered from our home. Knowing that he has a “taste” for the great outdoors now, I’m more hyper-vigilant than ever to keep Ronan safe. To do that, I check every lock, window and door of our home multiple times a day. I check, recheck and check them over and over again. Ronan does this, too but for a different reason. Just as many times as I glance up to make sure that the alarm units are activated and that the out-of-reach swing locks are locked, Ronan also looks up. But he’s not looking to see if the locks are locked; he’s looking to see if they are unlocked. Despite his delays and limitations, Ronan is incredibly smart. Nothing gets past the kid. Nothing.
I try to stay educated on wandering initiatives and what other families are doing about it. I do this because we face a potentially grave situation should Ronan leave the house again. So, when I heard that Wendy Fournier would be speaking as part of the Interagency Autism Coordinating Committee (IACC) panel on the subject of wandering at the July 9th meeting, I made sure to tune in.
Wandering, also known as elopement, fleeing, bolting or running, is a common behavior or response for some people on the autism spectrum. The IACC has discussed it for some years now. Not surprisingly, the more they sit and talk about autism and wandering, the higher the fatal incidents seem to be. I believe that it’s time to end discussions about wandering and really act on it.
With another panel on the committee’s agenda, I’d
hoped the presentation and commentary on this increasingly fatal issue would be
powerful. Wendy Fournier stepped up and
provided just that. Wendy, President and
founding member of the National Autism Association (NAA), and the entire NAA
group has done a great deal of work to bring wandering awareness to the
public’s attention. They have worked
tirelessly to also do something else: to
While listening to Wendy speak about this very important topic, I went from cheering her on to breaking down in tears. Each night this week, I’ve been trying to re-watch the archived video as well as read through the slides Wendy used because I wanted to highlight her presentation. I can’t get through it though. Sitting alone in my office as I slowly click from one slide to the next and see the images of those we’ve lost too soon was too much. I’ve sat frozen at the computer night after night unable to see, think or write. Each child, each story and each unfortunate death was emotionally overwhelming and brought me back to that dark, winter night when I temporarily lost Ronan. Tying to take notes through the tears wasn’t working. I just couldn’t finish it.
By Cathy Jameson
Last week, after listening to the Interagency Autism Coordinating Committee’s (IACC) meeting—but minus those in attendance who tirelessly offered their insight and efforts to treat and prevent the ever-growing autism epidemic, I walked away quite upset. I shouldn’t have expected much, I know. But, if you’ll remember I’m a dreamer. I’m a hoper. Most importantly, I’m a Mom who wants the help others avoid the negative side of autism—the kind that severely affects my son.
So, against my better judgment, I gave the IACC another chance. And why shouldn’t I; they claim they exist to help. The IACC is “…a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.”
The IACC was established in 2006 when the autism rate was 1 in 110. It came about with the enactment of the Combating Autism Act. The key word in that sentence: combat. Unless they’re using a different dictionary, combat means to fight against or to do away with. With that in mind, you’d expect the agency, would actually work toward not just addressing but doing something about autism and its rising rate.
Instead, meeting after meeting, and for far too long now, it feels like the IACC is still merely just talking about autism. Anyone can have a conversation about autism. I do on a daily basis. But when I talk about it, I’m giving tips to parents on how to prevent it. I’m sharing ideas with a therapist on how to treat it. I’m also participating in action alerts on how to support practical changes to make affected children’s lives better. I’m sharing real experiences peppered with practical solutions.
When I talk about autism I’m not tiptoeing around hoping no one will notice how much it’s been ignored. I’m not suggesting wasting valuable dollars on more uninformative research. I’m not citing inaccurate statistics, skewed by fraudulent individuals who are doing their damndest to cover up an epidemic that didn’t have to be. I’m not dismissing the pleas being voiced by thousands of frustrated parents. I’m not writing off the useful answers, advice and professional opinions of those in the trenches who truly know autism. And I’m not creating more committees and subcommittees to talk about unnecessary data about autism. I, unlike the IACC, am making an effort to combat autism. They, for reasons that I am unsure, are not.
You’d expect the experts who sit around the IACC table to do more than just consider what their invited guests and speakers have offered. You’d hope the people who sit on such a committee could be the ones who’d crack the whip. You’d even expect them to get something done. In searching for why they haven’t, I gave a hard look at the IACC’s mission and at who they’ve chosen to sit around the table. In doing this, I discovered I have less respect, expectations and hope for the committee. Why? After Wednesday’s deplorable meeting, I realized that the IACC doesn’t exist to prevent autism like I’d initially thought.
The Fourth, which is usually a celebratory day for me, wasn’t a happily, hopefully ever after kind of day this year. I had to forgo several of the day’s festivities because my youngest wasn’t feeling good and because of Ronan. I’d been looking forward to the holiday and spending time with my family just like scores of other families would be doing. Not wanting to point a finger at the kid, but Ronan, and how he simply cannot handle events such as the ones I wanted to attend, kept us stuck at home.
I scowled. I did. I did more than scowl too. I got really upset. Resentment fell over me as I recalled how, many years ago, we were able to go out as a family. Ronan was able to, and actually enjoyed those outings. We did it all: lunches, dinners, park dates, church as a family and even road trips! We did all that once before. Now? Unless it’s an appointment or therapy, we’re parked at home more often than not.
I don’t like it when we have to separate our family. Some of my kids get to do a __(super fun activity)__ with one parent while the other parent stays home with Ronan. Making the decision to separate has become more common as of late. Of course, whenever there is something to do out in town with Ronan, we assess the situation in the hopes that we can all do something together. Sometimes we can. Other times, it’s just not possible.
Balancing my wants and Ronan’s needs has become greater this summer, and I’m finding myself struggling more and more with it. On Thursday, knowing I’d be home with Ronan, I thought to myself, does taking a chance on bringing Ronan out into the crowds on a hot day with thousands of potential triggers worth the few minutes I might enjoy (while trying not to worry about Ronan’s dietary restrictions, wandering potential and the other what ifs that come with going out)? Does it matter if I get to watch the fireworks light up the sky with red, white and blue? Is it worth it to be upset if I miss this or if he misses it?
I could feel my resentment grow. The answer to those thoughts could all be yes. But the longer I thought about them, the answer to all of them was a big fat no.
As quickly as I allowed myself to be upset, I had to let it go. I needed to because being disappointed about missing an afternoon get together leading up to a 15-minute fireworks display is just a blip on the radar of my life. And it pales in comparison of what Ronan and I could do with our day instead.
By Cathy Jameson
“Look at me!
Look at me!
Look at me NOW!
It is fun to have fun
But you have to know how.” –Cat in the Hat by Dr. Seuss
Ronan has loved his Dr. Seuss books for several years now. He really enjoys ‘The Cat in the Hat’ and ‘Green Eggs and Ham’. Flipping back and forth to his favorite pages, he hands us his books so we can read aloud to him. Since he loves the books so much, I’ve memorized several of the pages. To Ronan’s delight, I offer these silly sentences to him at random times of the day. Ronan’s siblings do a really good job at keeping Ronan engaged too. Big Sis adds silly sounds and acts out certain scenes. Little Buddy offers goofy expressions at the really funny pages while pointing to the words he’s reading. Ronan’s little sisters wait patiently to see the pictures while Ronan eagerly looks for his next favorite part of the story.
Ronan’s been thumbing through, scanning and reading books for several years now. We have multiple copies and other Dr. Seuss media—board books, apps for the iPad, DVDs, flip books and have bookmarked favorite youtube videos. I love that while I read aloud, Ronan is able to fill in many of the words. It’s not verbal language yet, so he signs everything to me.
I turn into a teacher again asking Ronan to fill in the words, “But our fish said, ___, ___! Make that ___ ___ away. Tell that ____ in the ___ you do NOT _____ to ____. He should not be here. He should not be about. He should not be here when your ______ is out!”
Happily, Ronan knows the words and quickly adds the signs. I don’t have too much time to pause between pages, so I catch my breath and continue the delightful tongue twisters that bring Ronan and me closer.
Despite how my own schedule filled up while in Chicago, the event I made sure to attend—and what I think was the most important that occurred last weekend—was the Congressional panel. I got to the room early to make sure I could get a seat in the audience.
Scheduled to sit on the panel were four U. S. Congressmen. Rep. Dan Burton (R-IN), past Chairman of the Oversight Government Reform Committee, introduced hearings on Childhood Vaccines and Autism in 2000. His efforts to get specific questions on vaccines answered date back to before 2000 after his grandson became ill from his childhood vaccines. Rep. Dave Weldon (R-FL), now retired from politics, was also on the original committee with Rep. Burton. Rep. Bill Posey (R-FL) and Darrell Issa (R-CA),both new to the autism scene, were part of the November 29, 2012 Autism Hearing.
At that hearing, Rep. Issa promised that the committee will stay involved, and if there was further need, have more hearings about autism. Also vocal about his commitment to help us was Rep. Posey. Keeping true to his word, and along with Rep. Carolyn Maloney (D-NY), who was also present at the 2012 hearing, Rep. Posey has a bill before the House called H.R. 1757, The Vaccine Safety Study Act. It is a monumental bill that asks the government finally to conduct an unbiased vaccinated vs. unvaccinated study, a request that has been ignored for far too long. I was anxious to hear more.
I hoped one of the Representatives on the panel would give us a follow up of the hearing. To my knowledge, we haven’t heard much of anything from the committee. I don’t believe I’ve seen any updates about the reports that Drs. Boyle and Guttmacher were asked to supply after being grilled throughout their testimonies. Did they answer the questions they were asked about autism, vaccines and vaccine safety? It was comical yet terribly absurd that during the hearing, both doctors hemmed and hawed about statistics and studies on autism and vaccines—information that many an autism parent can cite from memory!