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.”
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.