By Cathy Jameson
Gosh, that smile of yours. I miss it. I miss that happy baby grin. And those sparkling eyes. And your husky voice and those perfectly round, oh-so-pinchable cheeks. Where did they go? You lit up every part of a room you walked into wherever you went. I miss that. I miss that about you and how full of life you were back then. I miss all of it.
When you started to slip away, much of your typical development was replaced. Silence fell over you. Milestone achievements came to an end. The further into the abyss you fell, milestones even seemed to reverse! It didn’t make sense. Since then, you’ve been met with every delay imaginable. Playtime? It’s a struggle. Interactions? They are fleeting. Abilities? Some are non-existent. Conversations? Those were stolen from you after your words disappeared.
What am I to do? Accept what happened to you and move on? That isn’t fair to you. You’re a worthy of more than that. Your life is more valuable than just being a statistic. Every fight and every victory I obtain for you is done to bring you justice. And peace. How I’d love to feel at peace again. Battles I wouldn’t wish on another human being are part of my mission--a mission to bring you healing.
So much changed for you and within you. What changed for me? New words I never knew existed pepper my vocabulary. People I never thought I’d ever encounter now sustain me. That’s comforting. Somewhat. Even with the knowledge I have, and with the support that envelops me, I still feel like every day is a new day and that nothing is a certainty. I’m in “go” mode at all times. Most of the time is because of unsettled fear. Fear that you could lose ground on any given day and fall further behind. I lost you once, and I’ll be damned if I lose you again to more regressions. So, I go forward. I learn everything I can. And I stand up and fight for you. It’s what I do to keep us both feeling like we’re moving forward.
Could I do more? Absolutely. Am I trying as hard as I can? You bet I am. Is it going to take a long time to do everything and then some for you? Apparently. We’re 8 long years into this, you and I. Am I ready to stick it out? Of course I will. Your life, your purpose and your well being have become a priority that I will not ignore.
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.
Not only has autism awareness been pushed so much that I’m blue in the face because of it, I recently saw a new campaigns are asking us to embrace it. Embrace autism. Really? I’ll embrace a lot of things, but I will never embrace autism. Before anyone jumps down my back saying I don’t love the person behind the autism label, rest assured I do love that person. I love Ronan to the moon and back (well, farther than that really because many of you know I will do everything I can for him). HE is who I love. HE is my inspiration. HE is the reason I work so hard. But, to ask me to embrace WHAT grips him from the inside out, what limits his abilities and his potential, and what he struggles with almost every minute of every day? Never.
By Cathy Jameson
An Easter Blessing.
Forty days ago I gave up something in preparation for my Lenten journey. Slipping up a couple of times, but before I could be totally sidetracked, I realized how quickly I could ignore this sacrifice. Fortunately, with reflection and prayer, I was able to redirect my thoughts and stick to promises made. Replaced with peace of mind, self-control and a chance to make amends, I continued through these last few weeks with discipline. In doing so, I also reduced a bad habit that I had allowed myself to engage in.
Today is an important day for me. Not only is it Easter, one of the holiest days of my Church’s year, it’s also a milestone of making a commitment to better myself. I got the chance to start something over, and to do it better this time around. I pray that I continue to find strength to fulfill the promises I made a few weeks ago and that they have a positive effect on those closest to me.
Easter. A time of renewal. A time for joy. A season of new life. A season for growth. May today’s Easter blessings bring you new life also. May it fill you with courage and perseverance needed for this journey. May you too find strength to keep your promises alive. And with every possibility for hope and healing, may we all find happiness wherever we turn.
Cathy Jameson is a Contributing Editor for Age of Autism.
Congrats to Kasey Dettinger and Jeff Belloni, you've each won a copy!
Thinking Moms’ Revolution - Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children
How do 23 moms and 1 dad give birth to the same baby? Just ask the Thinking Moms!
The Thinking Moms’ Revolution is pleased to announce the arrival of their book Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children.
Autism Beyond the Spectrum is a compilation of over twenty stories of healing and hope collected by Helen Conroy and Lisa Joyce Goes. Each chapter describes how parents are fighting to recover their children from autism and related disorders. Beginning with how they met and where they are today, the twenty-four Thinking Moms share why the support of close friends, who are also parenting kids with special needs, is so important. From their individual experiences to what they’ve learned during their journeys, read how TMR’s determination and friendships have become daily motivation for parents worldwide.
Congratulations to the Thinking Moms.
Hearty congratulations to Contributing Editor Cathy Jameson whose AofA post called "The Autism Parents' Bucket List" was picked up by Michigan's MetroParent online site. Earlier this month, Contributing Editor Julie Obradovic's post on grandparents was picked up by Grand magazine. Thank you to our Contributing Editors for their continued excellent writing.
I don't live in southeast Michigan, but I stumbled across Metro Parent's Childhood Bucket List last month online. With a cheerful graphic and a happily-ever-after tone, it was one of those bright and sunshiny pieces that should leave readers in high spirits as they thought about their child experiencing the 101 exciting experiences and lessons on the list. But for me, the mother of a child with autism, it had the opposite effect.
At first it was fun to read the suggested must-do activities. But the more I read, the more I felt completely left out. Easily, I could see my four typical children enjoying many of the suggested outings, but trying to imagine Ronan doing them? Not a chance... Please leave a comment at MetroParent.
How do 23 moms and 1 dad give birth to the same baby? Just ask the Thinking Moms!
The Thinking Moms’ Revolution is pleased to announce the arrival of their book Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children. We have two copies of the book to give away. Please leave a comment below to be entered to win.
Autism Beyond the Spectrum is a compilation of over twenty stories of healing and hope collected by Helen Conroy and Lisa Joyce Goes. Each chapter describes how parents are fighting to recover their children from autism and related disorders. Beginning with how they met and where they are today, the twenty-four Thinking Moms share why the support of close friends, who are also parenting kids with special needs, is so important. From their individual experiences to what they’ve learned during their journeys, read how TMR’s determination and friendships have become daily motivation for parents worldwide.
Congratulations to the Thinking Moms, and good luck to our AofA readers who enter the contest!
I went to the thrift store yesterday and found a “vintage” Clue game in good shape with all of its pieces. While purchasing the game, I remembered this post I wrote a few years ago. Here it is again with some revisions. – Cat
It was done by the health care provider in the exam room with the syringe.
I used to play the game Clue when I was younger. Strategy, friends and a few hours of board-game playtime filled many afternoons. We were preteens-turned-detective using our imagination to guide us as we questioned, "Whodunit?" Each time we played, someone always found the evidence. Someone always pieced the mystery together. Someone always won the game. And someone always put away the game pieces storing the box until next time.
Piecing my son's health back together after his vaccine injury reminds me of the game Clue. When looking at all of Ronan’s evidence -- his physical health and then deterioration, his mental abilities and then disabilities, his emotional growth and then delays -- I conclude that it was done by the health care provider in the exam room with the syringe.
A few weeks ago Metro Parent magazine, a regional publication in Michigan posted a bucket list. Included were 101 exciting activities to be experienced during childhood. With a cheerful graphic and a happily ever after tone, it was one of those bright and sunshiny pieces that should leave a reader in high spirits. Obviously geared toward typical children and their parents, I was left more dejected than filled with joy.
At first it was fun to read the suggested must-do activities. But the more I read, the more I felt completely left out. Easily, I could see my four typical children enjoying many of the suggested outings, but trying to imagine Ronan doing them? Not a chance. It’s hard enough for him to do one normal every-day activity let alone attempt 101 reach-for-the-stars adventures.
Pushing the article out of my thoughts, I looked for something else to read. While doing so, I reminded myself how much Ronan has had to overcome. I am proud of how successful he is and the fact that it’s because of his sheer will that he makes much of the progress he makes. It may take ten thousand times more effort than the average child for Ronan to go through the motions, but he proves over and over again that he is no quitter.
While thinking about how long it takes Ronan to inch along, I got caught up in my thoughts. Instead of continuing to think about Ronan’s amazing personal feats, I unknowingly started to compare him to his peers. Glancing back at the 101 bucket list ideas, bitterness fell over me. Those incredibly fun things are just not going to happen for my child. They won’t happen now or any time soon for that matter.
I couldn’t help but think of how completely unreachable some of the must-do activities were. Not just for Ronan but so many children like him—their childhoods are so different than a typical child’s and their skills minimal or completely absent. The longer I stared at each entry the clearer Ronan’s abilities paled in comparison to whom these activities were geared toward. Also very apparent was the reminder that we’re years away from even considering introducing some of them. Sure I’d like Ronan to soak up the night sky away from city lights (#3), but picturing him outside in the dark of night under the stars made me shudder. He’s been under the stars alone before, but it was because of a horrible mistake I made when I accidently left a door unlocked.
Shaking that terrible memory away, I scanned further down the list. Make—and lose—a friend (#76). Friends. Oh, to have friends like typical children do! The friends Ronan has are ones we choose for him. Not because we are overprotective or controlling, but because Ronan lacks social skills necessary to know how to make and keep friends. The people Ronan is surrounded by are people we trust and people who appreciate him for the skills he does have. They enjoy his company even though his attention span is fleeting, and they never judge when his interactions with them are sparse.
I’ve had a really hectic week. Make that a really hectic month! We had multiple appointments almost every day for four weeks straight. We even had appointments to get to on some weekends. I’m not trying to get any sympathy, just stating the facts. Last month was BUSY with a capital B. It was also difficult. Lately, I’ve been a little bit overwhelmed with my family’s very full schedule. I know something’s got to give, but trying to eliminate one appointment or therapy visit isn’t the answer. That won’t work because whatever we miss will likely have to be rescheduled for another day on another busy week. That isn’t a relief and just prolongs the busy and the difficult.
I’ve finally committed to remembering to take care of me after putting myself and my needs on the back burner for too many years. After neglecting some of my own health needs, I carved out time to finally catch up. I now have weekly appointments to schedule, to remember and to get to. Trying to squeeze everyone’s stuff on our calendar takes careful planning. Inevitably, everything we need to get to doesn’t fit. I don’t like to be the one who has to chose who’s getting shoved to the bottom of our list. In the past it used to be my stuff that had to go. I’d be okay with that now if I were spending time doing activities that didn’t matter—like trips to the salon, meeting up with friends at the coffee shop or doing some retail therapy. But, my appointments have become just as important as everyone else’s.
Our entire family is so busy right now that I have had to schedule when I can get to the grocery store. That happens in the only 2-hour time block I have open on Mondays. I know at some point I need to slow down and open some more time on our calendar, but “slow” is not an accurate word to use to describe my five on-the-go children. To keep track of everything we’ve got to do, I carry our schedule with me electronically. It’s the only way I can make sure I know which child should be by my side, to remember where we need to go and to also know when we have to be there. Using my cell phone, I check the calendar on it several times a day. I do this to make sure I haven’t forgotten anyone or anything. If I’m not picking up or dropping off one child one day I’m picking up and dropping off two children to back-to-back appointments another day. Sometimes the appointment locations are close to each other, but other days I’m driving across town through traffic hoping to arrive at the next destination on time. We usually get where we need to as close to on-time as possible, but we have had some tight squeezes.
The clinic or groups we see are very aware of our situation and of how many things I’m currently juggling. Thankfully they don’t fuss when we walk in late. It helps that we’ve had a chance to create good relationships with all of our providers and with people I am advocating with in our community. They all understand the pressure of raising kids and give me a simple nod and smile letting me know they get it, and to relax, Mom, it’ll all work out. I appreciate that because I’ve messed up their schedule by being really late other times or when I’ve shown up to an appointment on the wrong day altogether. For the first time ever last month, I triple booked myself! I was truly embarrassed and disappointed that I messed up. I quickly apologized to the two providers I had to cancel with and headed to what I considered to be the most important of those three appointments: the one where I was interviewed about autism, vaccine injury and Ronan’s journey.
Mid-week last week I got a phone call from the nurse at Ronan’s school. It hadn’t been more than half an hour since I’d dropped Ronan off when I saw the school’s phone number flash across my caller ID. The worst emotion comes over me when I see that phone number: heart-pounding, drop-dead dread.
Of course, I shouldn’t think the worst. It could be Ronan’s teacher calling to ask me to pick up snacks for Ronan while I’m out shopping. Or it could be a reminder about an upcoming IEP meeting. But, I always know when it’s the school nurse. And, I can always tell when something awful just happened.
Barely audible, I answered, “H-e-l-l-o?”
Please don’t be anything wrong. Please don’t be anything bad. Please not an accident. Or a seizure.
“Hi, Cathy. It’s the school nurse.”
I braced myself, my body shrinking as I unconsciously curled up waiting for her to continue.
I pressed the phone as close to my ear as possible, “Yes?”
I already knew in my heart what happened, but I still prayed. Please, oh please, oh please! Please don’t let it be serious.
“Ronan’s just had a seizure….”
In my mind, I’ve already put the car in drive, have raced to the school and am holding Ronan in my arms.
“Oh, no!” I exhaled. As I release the air I’ve trapped inside, new emotions fill me—sadness, fear and worry.
“I’ll be right there.”
As I drove toward the school, the nurse shared more. She described the duration of the seizure, what Ronan did before, during and after, who was with him and how he’s responding now. Thankfully, Ronan is okay, but I still need to see him. To hug him. To tell him that I love him. And to say how sorry I am that he had another seizure. I asked the nurse to tell Ronan that I was on my way and that I’d be taking him home for the rest of the day.
The closer I got to Ronan’s school, the harder it was to keep from crying. This wasn’t his first seizure or the first seizure at school. I’ve gotten calls like this before and go through a mix of emotions. Sometimes I manage to hold it together until hours later, and other times I silently cry while the nurse is still on the phone with me.
As scared as I am when I get these calls, this one had me worried, but, I still didn’t cry right away. I could have easily burst into tears the second the nurse told me what happened. Or while she described how this seizure seemed different than the last one Ronan had. Or while I pictured Ronan’s teachers gathering around him to help him through it. Or how I imaged how they stayed very close to him afterward. Thinking about Ronan did after this seizure is what started the tears.
Ronan is usually either confused after a seizure or jumps right back into whatever he was doing prior to it. This time, immediately afterward Ronan was able to sign that he wasn’t feeling good. He signed his response which is something Ronan’s never done with me after a seizure. When he was asked if he was okay, he was able to tell someone that no, he wasn’t. So, when I imagined Ronan and his teachers who asked, “Ronan, are you okay?” and he signed, “No,” I was overcome. Not only did he respond quickly, but when they asked him a few minutes later if he was okay he again signed, “No”. He knew, and he was able to express himself clearly. This was a first, and was also a breakthrough in his communication.
As I approached the school grounds, through the tears I wondered why. Why Ronan? Why now? Why, after these last few weeks? He’s made some really neat progress, and he’s been happier. He’s been willing and able to do more. Why? Why after frequent successful school reports and after advancements at therapy. Why now? And, why again?
One of my favorite t-shirt I had when I was younger was light pink with a Precious Moments character. It had this saying on it: Tea for Two, Two for Tea. One for you, One for Me. I loved that shirt and wore it until it was too small for me. I was reminded of it while waiting for an appointment to start one morning. Ronan and his two little sisters were with me that day. Since Izzy and Lil Sis are all too familiar with waiting rooms, which they frequent while Ronan goes from one specialist to the next, they knew it could be awhile before we were called back. They found the waiting room toys quickly and began to play. Ronan, who isn’t yet fully interested in toys or playing, used the dry erase board in another corner of the room. I wrote some words Ronan knew and asked him to write some also. After he’d signed the words I asked him to identify, Ronan finger spelled words that he wanted me to write. Not too long into our activity we were interrupted by Izzy when she called to me, “Mom! We’re ready (giggle giggle); you sit here (pointing to a spot on the rug). We’re having a tea party!” The girls had set up a cozy tea party right behind me and now expected my full participation.
Since Ronan’s attention span is still short I planted myself where Ronan could continue to write, where I could keep my eye on him and where I could have a “bite” of the tasty treats my little girls had set before me. Well, before I had fully settled at this tiny feast on the rug, Ronan came over and sat in my lap. He looked at the spread of plastic bowls, colorful plates and miniature food pieces and grabbed a plastic chicken leg. I was curious to see what Ronan would do with it and was then shocked as he lifted the chicken leg to my mouth as if asking me to take a bite of it. I said thanks and tried to grab it from his hand thinking he was giving it to me. Ronan wouldn’t let go but instead put the chicken leg right at my lips. He kept it there and waited. I tried to say thank you and reach for it again, but Ronan wouldn’t let go of that chicken leg. What was he doing? Sitting there so close to me waiting very intently, it took me just another second before I realized ohmygoodness! He wants me to “eat” it! I pretended to take a bite while reaching for the chicken leg to put it back on a plate. Nope, that wasn’t it. Ronan left that chicken leg hovering in the air.
My pretend eating was not enough. Ronan kept the chicken leg poised at my mouth now moving it gently closer to me. Ronan insisted I do more, but what? Staring straight into my eyes, I looked right back at him. Wishing that intense stare had directions with it, I thought, “Tell me, little boy. Tell me what to do. You know Mommy would do anything for you.” I opened my mouth and pretended to take an even bigger bite, but still, Ronan’s reaction, or lack of one, told me there was something more he wanted me to do. My mind was doing cartwheels at this pretend cooperative play and his focused interest. Think! What am I supposed to do? Normally I’m the one waiting for Ronan to respond. This time, I was being tasked with something that felt impossible.
Not wanting to disappoint, or to ruin the wonderful pretend play Ronan was finally interested in, I leaned forward toward the chicken leg that Ronan was holding tightly to. Still staring at me, his eyes pierced mine. Oh! “Yum,” I blurted out. “Thanks, Ronan. YUM! YUM!!!” Finally satisfied, Ronan took the plastic chicken leg away and put it back on the plate.
Something’s been bothering me for a long time now. It shouldn’t because many of us would be lost without it. Parents get ripped a new one for using it. But, lots of us, not just autism parents, continue to rely on it. What is this thing I’m talking about?
Now, before some of you who lurk on this page have the chance to roll your eyes, please consider how much you yourself use the internet.
Do you shop online?
Do you download music for your iPod or add books to your Kindle?
Do you order stamps, check on deliveries or schedule appointments on the Internet?
Do you do your banking or pay your bills with secure web browsers?
Do you communicate on message boards or Twitter?
Are your circle of friends on Facebook, Google+ or Pinterest?
How many of you keep up with your home team checking the latest stats on the team website? Who’s made financial gains after buying stocks via an e-trading company? What about your taxes? Did you e-file last year or get a direct deposit of your return to your savings account? Have you ever checked in for travel on an airline’s site? Isn’t it amazing in that with just one click of the mouse a getaway trip is confirmed and a jet awaits you at the airport?
The Internet is host to anything and really, just about everything. Just about everything can now be blogged, posted, shared and pinned. Both good news and bad news can be found while cruising the net—from joyous life moments like birth announcements, engagements and holiday adventures to creating memorial pages or charitable trusts for a lost family member. I think it goes without saying, and that many will agree, that the Internet has a great many uses and makes life a lot easier, not just for a few, but for millions across the globe. So, why is it okay for some people to use the Internet to research or promote their thoughts and agendas, but it’s perceived as practically sinful when others, like parents of vaccine-injured children, use it for the same purpose?
Websites provide answers. They list information that would be incredibly difficult to find elsewhere. From mindless entertainment to state-of-the-art advancements, websites reveal a multitude of facts, data, medical breakthroughs and more. It truly is incredible. Within nanoseconds what can be looked up on the internet has helped someone make a life-saving decision or given peace of mind. Who doesn’t appreciate that kind of immediate information and gratification?
I know that some people don’t appreciate what’s accessible on the web, especially when an autism parent finds it and begins to cite it. Those answers, that research, these numbers, that cover up. The information is there as plain as day, but we’re told how foolish we are for looking it. It’s as if we’ve stumbled upon a national secret. Heaven forbid parents take that information and think it beneficial in their search for help! And, they better not share that information with anyone, especially with that doctor who won’t admit he’s got less knowledge than that answer-wielding parent!
Last week I was doing some writing in my office when I heard a strange noise coming from the kitchen. I asked one of Ronan’s siblings to check out the noise hoping I could finish what I was doing. My oldest belted out, “M-o-o-o-o-mmmmmm. Ronan’s got his cupcakes from the freezer. You might want to come and help.” I darted around the corner and was greeted with Ronan’s beautiful smile as he enthusiastically signed “Help me”.
Just a few mornings prior when I woke Ronan up for the day, I signed his breakfast menu to him. Since it was a Sunday morning we were having a larger-than-normal breakfast. I signed, “Ronan, I made you waffles, eggs, bacon and milk and juice.” He looked at me as I was changing him and signed back, “Cake.”
“Cake?! Ronan! I didn’t say cake. Wait, do you want cake for breakfast?” He flashed a smile and signed cake again.
“Cake. For breakfast?” I asked.
“Yes. Yes. Yes.” Ronan signed. This time his whole face was smiling.
“You got it, Buddy. Cake for breakfast it is!”
When we got to the breakfast table Ronan didn’t want to sit down. He walked into the kitchen with me and saw where I keep a few gluten-free muffins (which we have a habit of calling cupcakes) ready for special occasions on the top shelf. Ronan watched me open the box and kept his eye on the toaster oven as it heated his tasty treat. Not interested yet in the meal I had prepared, Ronan lingered in the kitchen. I showed him the package and pointed to the words on the box. Since it was going to be a few minutes more before he could eat his cupcake, I took out a pen and a notebook from the junk drawer and wrote some words down: cake, cook, oven. I asked Ronan to point to the words as I said them aloud. He easily could identify them and pointed to cake several times after. When the toaster oven was done warming up his special treat, he sat down at the table, gobbled up the cupcake and then ate the rest of his breakfast.
I saw two stories in the mainstream news that caught my eye. The stories also left me a little bit stunned. The first was a tragedy that occurred in late December. A fatal bus crash in Oregon, which claimed nine lives and injured many others, brought swift action—the Canadian-based bus line responsible for the horrific crash was immediately suspended from providing services in the United States. The second story, which is still being investigated, was about faulty Boeing 787s. Two separate incidents that both involved the planes’ batteries shut down the 787 fleet worldwide. Thankfully, no one was reported injured in the incidents involving the airplanes. Extra precautions are being taken in order to probe the mechanical gear before further flights are scheduled.
Now, I’m all for safety at its finest, and of course to protect life at all cost, but I have to ask, did it really only take one crash and two potential accidents to completely ban and suspend companies from providing services here in our own country and across the globe?
Let me continue that question with another and also share why this stuns me:
Did it really only take one bus crash (and yes, I do understand the terrible nature of the event) and two potential airplane accidents (and yes, having a plane go up in flames due to faulty wiring most definitely needs to be addressed) to completely ban and suspend companies from providing services, BUT injecting vaccines that have caused injury and death remains a common and heavily promoted practice in many countries across the globe, including our own?
When you have a chronically-ill child such as I have, and you know that some of the problems started from measures that could have been prevented, you read everything that crosses your path. So, it’s no surprise that when I saw the title of this article last week it piqued my interest. I was actually giddy thinking that CNN might shed a positive light on why parents should consider firing someone like their pediatrician. Since so many pediatricians seemed to have turned a blind eye to vaccine injury, and parents report feeling bullied by these doctors to vaccinate their child, I was lured to read more from this mainstream news source.
Pediatricians, and other medical specialists, seem to be revered. They walk as if on hallowed ground. Why, their work includes helping the most vulnerable and precious of human beings—babies! But, as with any sort of doctor, pediatricians are also human. And, we all know that humans aren’t perfect. They make mistakes. And sometimes, the mistakes they make are grave.
For many of us growing up, no matter what upbringing we had, it was second nature to show respect toward doctors. Lab coat or not, we were taught (or maybe just assumed) that ‘doctor knew best’ no matter what. We were not to question them. We were never to doubt them either. We were to trust and trust infinitely. Well, I don’t mind sharing that some of Ronan’s doctors were more human than they were medically savvy. Those doctors, the ones who contributed to Ronan’s decline, were fired from treating Ronan because of their unprofessionalism, their inadequate knowledge and how utterly disrespectful they were to my son. Their years of schooling, their thick medical textbooks, their professional title and recognizable initials that followed their name meant absolutely nothing if they didn’t see that, or care that, Ronan is first a little boy, and second, has some serious and complicated medical needs. Making the decision to walk away from one of Ronan’s doctors wasn’t a quick decision. It was made with careful thought and always after weighing several factors.
To put the article from CNN (which was originally posted in Parenting.com) in an autism parent’s perspective, let’s go back and look at a situation that many of us have unfortunately encountered and agree that firing a pediatrician absolutely makes sense:
A young couple begins to question their pediatrician’s ____ (knowledge, motivation, ethics, bottom line) after their baby’s recent ___ (vaccination; series of vaccinations; adverse reaction(s) to a vaccinations).
The timing of the questioning comes soon after the young couple watches their ___ (newborn; 2-, 4-, 6-, 9-, 12-, 15-, 18-, 24-) month old begins to deteriorate.
*Note - notice how baby’s age correlate to the recommended vaccine schedule as well as the “well”-baby visits when vaccines are generally given.
*Note also - deteriorate could mean one, or several, of the parents’ following observations and concerns:
He is no longer as ‘engaged’ anymore.
She is acting ‘a little slower’.
My baby looks ‘sort of out of it’.
He used to speak…she used to crawl…he used to look right at me…she was such a social butterfly…but now there is nothing…no words…unable to walk…with a blank stare…as if the curtains were pulled and they are now ‘in their own world’.
All of the above statements from this situation conclude with Mom or Dad saying, “Something isn’t right. Doc, can you help me? Could it…could it have been the vaccines?”
Reason #1 – It Can’t Be
If the doc’s response is, “The Vaccines? Pshaw! You ___ (silly, stupid, uneducated, dumber than dumb) parents. Vaccines are ___ (safe, effective, for the greater good), dontcha know. Everyone should get them.”
*Note- the doctor’s response might also include non-verbal body language: a raised eyebrow accompanied by a tsk, tsk look. The doctor may not resist adding a snarky, “Have you been reading bunk on the internet again?” sort of remark while sneering.
What could Mom and Dad do?
Take the baby, and run.
While people are divulging their resolutions this week, I hear the making of solemn promises – to do better for themselves, to do better for others or to do better for the world. I make all kinds of promises throughout the year that I work toward, but I am not a typical New Year’s resolution maker. I consider myself more of a constant work in progress, so I applaud those of you who have a habit of making (and keeping) resolutions year after year.
As I listen to the goals my friends have made with these resolutions, I can’t help but think about simpler times. Many of the resolutions have folks returning to activities or events that they had enjoyed from the past—to be the weight they were 20 years ago, to finish a project they started before kids arrived on the scene, to get back to playing a sport they loved, or to find time to enjoy a skill or craft they had perfected before joining the rat race. For many, finding that former weight, that oneness of self or being able to carve out a bit of time where the rest of the world doesn’t matter for a moment is important. Who doesn’t love the chance to feel like they are in charge of their life again while gaining some positive results in return?
Resolutions give us permission to go back to the past, to yearn for yesterday and to dream again of what we thought was perfection. A lot of us want that, and many wouldn’t mind going back in time to make it happen. I know I’d wish for a redo given the chance. How I’d hold onto things I never should have let go, and how I’d appreciate the little things that, when added up, make me feel whole. Oh, how I would change parts of the past! Bad decisions and terrible choices would be the first to go. Anything that now includes life-long reminders of awful choices I made would be given the boot. Anything that brought forth heartache or disappointment would be quickly erased. Mean people? Gone. Rotten attitude? Vanished. Wasted time? I’d ask for a refund and promise to spend it wisely instead in the future.
To go back. To remember when. To learn from the past. To try to go forward. I, for one, would take a second-chance past to appreciate time, people and events differently. Pre-this or pre-that—career, children, stress, anxiety—from when I had no clue to now, as I realize that what I face as a parent, is ten times harder but has made me infinitely stronger. What a difference life would be to see and re-experience a return to yesterday.
Promises were sacred to me when I was a kid. They were what wishes, hopes and dreams were made of. They were part of childhood and how we learned how to trust others. If promises were broken, they were reminders of real life and that, as much as we didn’t like it, change was inevitable.
Playground promises had us thinking they’d last a lifetime:
I promise to be your best friend forever! (Even if forever was only for a day.)
I promise to invite you to my birthday party! (Until they changed their mind.)
I like you. Promise? Yep. (Until someone else hipper, cooler or more exciting came along.)
As an adult, promises are still important, but some that are made are not life-changing and don’t carry as much weight:
I promise to do the dishes...later.
I promise to organize the laundry room...soon.
I promise to return that phone call...eventually.
This weekend brought some milestones for our family. We celebrated a big day for Ronan, who turned ten on the 21st, and we remembered my best friend’s baby who passed away a year ago on the 22nd. My emotions were tossing and turning knowing that each day was approaching: Ronan’s birthday where we would joyously celebrate another year of his life, and the anniversary commemorating the baby’s short life before an unexpected death. I flipped from extremely excited and giddy to somber and reflective. Trying to keep somewhat focused—as it was still a regular week for us chock full of appointments and school—was difficult. Added to my ever-changing emotions included getting a call from Ronan’s school when he had seizures midweek. Stress crept in as another one of my kids got sick and missed school several days which in turn limited every one of my last-minute Christmas preparations. We had holiday visitors arriving and a homecoming to prepare for as well as my husband was due to return from 4 months of extended travel. You may wonder how I survived last week at all. It was a week full of excitement, grief, struggle, celebration with some yearned-for peace. Add in dealing with the repercussion of last week’s wandering scare while ordering items for our search-and-go bags (which will hang by the front door from now on), and I am surprised that I am still standing, too!
While reflecting on how full last week was, and who was involved in each of those events that brought varying feelings, made me pause. It’s a lot to handle in a short amount of time. But, each event revolved around life, life that is precious and filled with reminders that are the many blessings that fill my life—including some pain and suffering because that too is part of living.
I live for the people I am immediately surrounded by. They are the ones who need my undivided attention and bring me great joy. They require my help and desire my support. I depend on these people just as much because make my world go round. Where would I be without them? More importantly, who would I be without them? Their situation, our situations, can cause me to crumble in a moment’s notice. But, it’s through these people, and how I was blessed to know them, that brings me life—life that I am grateful for and one that is full of so many reasons to live.
Last week has come and gone. The celebration of Ronan’s birthday is now a happy memory. The anniversary of a life lost remains a sober remembrance. Intense emotions have subsided with new ones are just moments away. Homecoming plans and Christmas preparations have been fulfilled, and our family is complete again. As my children get ready to observe Baby Jesus’ birthday in just a few days, my request to you as we enter what I believe is one of the holiest weeks on the calendar is to look at those people nearest you who make you who you are—your children, your immediate family, your spouse, those who you wish were flesh and blood, and even those who impact you negatively—all of these people affect you, your abilities and your choices. They have in some way shaped you. They depend on you for every single want, need or skill they may never develop.
Many parents have likened their child’s symptoms to having a feeling of being trapped in their own bodies. What about how that child feels about their environment which we structure and oversee as much as possible? Hyper-vigilance helps keep that child safe and under watchful eyes (as do multiple locks, security systems and tracking devices), but as this story shows, kinks in the system happen, and danger can be just moments away.
Tuesday. More specifically Tuesday evening shortly after 7 o’clock. It’s pitch black outdoors and a very chilly 30°. Families on my block are usually finishing after dinner chores, getting kids ready for bedtime or settling onto the couch to watch a TV show. I’ve usually just started our bedtime routine counting down the minutes to some ‘me’ quiet time.
Tuesday was anything but quiet.
I was upstairs in my home tucking three of my little ones in bed. It had been a very difficult day full of rotten attitudes (mine included), so I welcomed their bedtime quicker that evening. My oldest had been sent home from school mid-day with a fever. She’d gotten into bed long before my youngest three were tired. Ronan was in an exceptionally good mood that evening. He’d had some great school reports for a few days in a row and carried that positive energy home. He was still wide awake even after a long day at school with ABA therapy immediately after, so I put a DVD on for him while I ran upstairs to get the littles tucked in. Ronan is usually tucked in first, but giving him some movie time would give me a few extra minutes to make amends with the kids about our rotten day earlier.
I could hear Ronan happily squealing downstairs knowing his favorite scenes were keeping him captive. He sort of hums along with the music from the movie which has always been helpful because I can always hear him even if I don’t have eyes on him. I’d just sat with the little girls for the first few minutes of Ronan’s movie. They were full of sleepy smiles and about to drift off to sleep. I had about 10 minutes before Ronan’s movie was over which was plenty of time to hop over to Little Buddy’s bedroom. Ronan’s little brother picked out a Bible story and was ready to say prayers. Ronan was still squealing with glee as Little Buddy told me a little bit about his school day and shared the specific special intention he has said nightly for Ronan: for Ronan to talk and to play with him and so that other kids like Ronan can be healed. I started to read the Bible story knowing I had just about five minutes left before Ronan’s movie was over. Ronan made more happy noises as Little Buddy settled under the covers.
By Cathy Jameson
Reading several parent testimonies that were shared with me and also submitted to the Oversight and Government Reform Committee for the record in response to the Congressional Hearings on Autism brought me to a place I try not to visit. It’s a place where Every now and then I find myself sobbing uncontrollably slumped in a corner in my kitchen on the cold tile floor. I sit there unable to move. Holding my chest as overwhelming emotions wash over me, I try to make sense of what has happened and what didn’t have to happen. I shake my head back and forth without even realizing that I am shaking while screaming in my head (and sometimes out loud). Last week the pain and sadness had me in that place again crying, "Why? Why Ronan? Why all of these children? For the love of God, WHY?!”
Those stories i cried through are testimonies that are now part of a permanent record of the investigation regarding the rise in the US autism rates. Each documents and provides intimate details about normal births, perfect APGAR scores, beautiful babies handed to doting parents and what followed when parents submitted to what their doctors deemed, and our government approved, as best.
Every single testimony.
Each one I read was full of facts about perfects babies, facts pertaining to vaccine injury, facts about how typical childhoods disappeared, facts about future fears stemming from false information delivered as truth. All of these testimonies were full of undeniable, hard-core facts.
Line by line the stories were full of horror and read like a science fiction novel turned medical investigation mystery. Characters are innocent children experiencing full-body eczema, multiple food allergies, cyclical vomiting and chronic diarrhea. Their communication turned to screaming bouts having replaced baby babbling or first words while seeking relief from pressure and pain by head banging the floor or the walls.
Lists of the new “normal” fill the pages:
Severe gut problems.
Immune system failure.
Special education placement.
Psst, did you hear that?
Congress talked about autism. Not just any old autism, but the autism that has increased by 1,000%. And that it has something to do with vaccines and not "better detecting". The autism that has something to do with thimerosal. The autism that can be treated with diet. Oh, and the autism that has infiltrated Africa. That same one that never existed on that continent until we, good old' US of A, shipped it over in the form of vaccines. I know, I know! It doesn't sound real, does it? Even I couldn’t believe it. But I was there on Thursday, and I heard it.
When I got a message that the Congressional Hearing on Autism was being scheduled, and that families were being encouraged to bring their children, I thought long and hard about attending. Could I do it? Could I jet to D.C. for the day? Can I add something political to my busy life? Should I go? Could I leave everyone behind and go by myself? Or with kids? I'd have to rearrange several appointments, figure out how I’d get there, factor in taking some of my children and secure a babysitter for those who weren’t, and pray that they had a normal day with no incidents while I was away. Could I? It was a lot to figure out.
I do so much already, mostly solo with hubby on extended travel again, but was this something I should add to my schedule? What if there was an emergency back home, or if Ronan had seizures at school again? Do I have time, energy and back up plans for my back up plans to pull this off? Should I?
Why would I not!
Just thinking about coordinating a day in D.C. took an effort. But the reasons why this Hearing was important were far greater and affects more than just me and my family. The Hearing, this Hearing, the one that's taken over ten years to be scheduled? It was important for everyone to be there, and I knew that I really should go if I could.
If everything lined up, if I could pull it off, I could get there. And I wanted my older, typical kids to be there as well. They are beyond being aware of autism and have been ready and waiting for years for other people to finally get up and do something about the type of autism we hoped was going to be discussed, the kind that their brother has.
Oh, yeah, we'd be there.
I coordinated as much as I could and got my kids' schedules organized and finalized the day before the Hearing. Ronan's big sister and typical brother, Little Buddy, we're excited to go. They didn't know too much about what the Hearing would cover, so I told Little Buddy that it was a big meeting about autism and that Mommy wanted to bring them too because we might learn something helpful for Ronan and of course later share with other families. My daughter understands much of why I advocate and frequently asks to read whatever I am currently reading to keep up with the news. She has a great understanding of how difficult some of these last years have been for our family and why we’ve had to make the decisions we have made for Ronan’s health, his care and his schooling. I am proud of how much she knows and what she has shared (and discusses in depth) with her classmates about autism. Having two of Ronan’s siblings with me was important. Not only was I grateful to have my kids in tow, but I was proud that they wanted to be there themselves.
D. C. or bust
Some days I speak only for myself and of my own experiences. Other days it is my hope to speak up for others.
I believe that our children’s vaccine-induced autism has given us a lot in life. First encountered through an unfortunate series of events, the autism of today can destroy families and yet build relationships like no other. Some of what we’ve gotten with the diagnosis is rotten, stinky and horrible while other aspects have an element of positive that includes the tiniest hint of a silver lining peeking through.
As much as an autism diagnosis is part of a spectrum, so are the various emotions we experience in return. From naivety to hope, it is not too hard to quickly go from one extreme to another! As each child is affected differently, our own days might vary quite drastically. As can each emotion. And how we react to them. We are liable to yoyo through extremes from one day to the next. One day is even keeled with everything running smoothly. The next, we only wish it would remain smooth. Instead, it has the potential to become a full-on fight for survival as every hour ticks by.
Fighting and survival. Who starts out parenting thinking that their child-rearing days will be a fight? Or that they’ll have to “survive” it? With what we’ve witnessed and with what we’ve been forced to handle, it does come down to a fight. Like for the thousands of families who filed in the US Vaccine Court. But who were later forced to walk away. Or for the many who face special educational battles yearly. After we’ve seen what we have and heard what we’ve heard, fighting and surviving has become second nature. We’re on edge. We’re ready to say ‘no more’, ‘no, you won’t’ and ‘no, you just didn’t!’ We’re not just ready because those thoughts don’t remain thoughts for too long. They become words that quickly fly out of our mouths directed at someone who offered another injustice. Or lie. Or worse, apathy toward our child. Since it’s been a long time that we’ve lay on the floor curled up in the fetal position wishing for a redo, we are much quicker on our feet. We know how to respond at lightning speed. Ready to fight. Willing to do battle. And to fight as long as we need to. We fight for the kids. For their rights. For their lives. To survive. And survive it is and will be so that we can be ready to fight all over again.
Over and over again. For those kids who seem to be stuck (like mine sometimes is) in a cycle that doesn’t show signs of an end. A cycle of slow development. Of sicknesses. Of sadness and sometimes despair. Will it never end? Can we skip over it? Or kick start a new cycle? Slow or lack of development stalls progress and the chance to hope. To hope that something good will come around again. Or that something, just one thing, could get a little bit easier. If I can just push through this. If Ronan can figure it out. If we can bypass this funk. If we can get in sync again.
Several times in the last two weeks I‘ve run into an expression that I have a love-hate relationship with: “Cathy, I don’t know how you do it all. How do you do it?” Since it’s usually a rhetorical question, and I’m not really going to answer it, why love-hate? Because someday I just might respond. And it isn’t going to be pretty.
Here’s the hate version. And, fair warning. It includes some of the things I want to say out loud but don’t:
How do I do it?! Do you really want to know? You wanna wear my shoes for a day and find out? You wanna see what I see? You wanna discover what others are continuously trying to cover up? You wanna read my PMs from parents asking for advice? Or emails from a distraught parent who finally connects their child’s deteriorating health to a vaccine injury? You wanna hear the cry of pain that a vaccine-injured child cries when his body cannot do what his mind is telling him to do? Or hear the frustration that comes out of a child who was physically capable of doing everything but is now both physically and mentally frozen in a developmental stage from eight years ago?! You wanna know more about that child? That it’s MY child who suffers more than you’ll probably ever suffer over your entire lifespan?! No, you don’t want to know? Come on, why not? Am I scaring you? Oh, I am? Well then, please, I implore you; don’t ask me how I do it all because one of these days I am gonna unload all of this on somebody and tell them everything—the good, the bad, the awful. And the ugly, unbelievable yet 100% God-honest truth.
Told ya it was a little harsh.
And now, the love version:
How do I do it? Oh, I’m so glad you asked! You see, something terrible happened when Ronan was a baby. Sure I could have done a little bit of reading which might have prevented some of his ails, but I really didn’t know enough back then. Now that I know a thing or two, my mission is to help as many parents as I can. I want to save their children and the world! I want tell everyone to education themselves on the explosion of environmental assaults we’ve all been exposed to. Read, read and read some more. It’s really pretty exciting to share what I know and what I have experienced. It’s actually a blessing to see what I get to see. I’m amazed at what I get to hear. I’m truly honored to have the relationships I have now with so many other parents because we’ve learned just so much from each other. And Ronan? I get to see my child blossom, albeit very, very slowly. But, I get to watch him grow as much as he is capable of growing.
Hmmm, that version sort of reminds me of rainbows and unicorns.
Managing Editor's Note: The East Coast AofA team took a drubbing from Hurricane Sandy. We are all safe and sound (and hope you are too) - but we gave Cathy the week off to tend to her family. Enjoy this post from last Fall.
By Cathy Jameson
I was filling a prescription for my typical son last week while hoping to stockpile some supplements that are known to ward off pesky coughs and colds lurking in our future. I was at a new place called The Wellness Pharmacy. Several people had recommended it, and I liked the sound of it. I was hoping they might offer some options to holistic or natural intervention like vitamins, supplements and organic products instead of ineffective over-the-counter syrups and flavored goo. I was eager to go inside to check things out, so I made a point to fill my son’s script there.
The store wasn’t a Big Box corner drug store, but a smaller Mom and Pop type of operation. I held out a little bit of hope thinking I might hit a jackpot of health and some of that wellness being advertised on the front door. Who knows? Maybe I would discover someone inside with a bit of knowledge about biomed to further guide me on this exhausting journey to heal my older vaccine injured son.
To my dismay, the owner should have dropped the word wellness from his sign. Instead, he would be better off naming the store *THE* Flu Shot Pharmacy because that’s the main product being advertised. Every counter, every shelf and every display screamed FLU SHOT. Even the stereo speaker system blared a flu shot commercial! I couldn’t escape the drivel repeating over and over again that “…NOW is the time to get your flu shot. DON’T be caught off guard. Isn’t it worth a shot?”
Worth a shot. It’s a simple expression. Yet, in the case of a vaccine it’s a terrible jest, a cruel joke. My health is not worth a shot. Shot meaning having a small chance of success. My health is worth a lot more than that. If I was to make that big of a medical decision, it wouldn’t be administered by an individual who knows nothing about my health beyond what medications he dispenses is frightful. The casual relationship I have with a pharmacist pales in comparison to the one I share with my personal health care provider.
Is injecting the vaccine in my body worth a shot? One that has 3 strains of the flu? No thanks. From the CDC website, the World Health Organization recommended these three flu vaccines viruses for this year:
an A/California/7/2009 (H1N1)–like virus, an A/Perth/16/2009 (H3N2)–like virus, and a B/Brisbane/60/2008–like virus. (HERE) If I were to get the flu shot, choosing only one potentially toxic formula at a time makes more sense. Multiple-dose vaccines like the one available this year are risky. Why? What if I was one of the unlucky ones who had an adverse reaction? Well, when you choose to inject a multiple-dose vaccine you may never discover which part of the vaccine caused the problem. In situations like this, less is more. Another thing to consider is what if a reaction like a seizure happened at the Big Box drug store in the middle of the toothpaste aisle? Would anyone know that I just got the vaccine, and please call 911? I would think better a place, like a medical clinic would be a more ideal location to conduct medical business.
Every few weeks I wear a t-shirt I purchased several years ago from the National Autism Association. The front of the shirt says, “I WISH I’D KNOWN”. The back of the shirt includes five tips:
A lot of times I wish I’d known a heck of a lot more before I vaccinated my children. I have actually said out loud, but to myself after Ronan has a setback, “Dangit. I wish I’d known!” How life might be so different with just an ounce of knowing just one of those tips.
Life is different. It is very different. Life is difficult, and on some days it can be very, very difficult. It can also be unpredictable even with eight years’ experience under my belt as a warrior parent. Those years of experiences haven’t been in vain, but they sure could have been a little bit easier if I’d known then what I know now.
Thinking about just how much I wish I’d known quite possibly could have changed life as I know it for both Ronan and me. Maybe now I would be a typical parent not ever stepping foot into the special needs arena. Maybe I wouldn’t care so much about the things I care so deeply about today. Maybe I’d have had an entirely different outlook on life altogether! But, because life is different, and sometimes difficult, and includes many life lessons learned the hard way, I wondered instead of “I wish I’d known” what if I had a t-shirt that said “I wish I didn’t know…”because there are a few things I almost wish I didn’t know about.
I wish I didn’t know about thimerosal in vaccines.
I wish I didn’t know about aluminum, formaldehyde and human diploid cells from aborted fetal tissue either.
I wish I didn’t know about our over-inflated and one-size-fits-all vaccine schedule.
I wish I didn’t know about live viruses and viral shedding.
I wish I didn’t know about encephalopathy, seizures, developmental delays and autism.
I wish I didn’t know about hot lots, table injuries and vaccine court.
I wish I didn’t know about special ed, 504s and R & S.
I wish I didn’t know about acronyms like ASD, PDD, OT, SLP, PT and IEP.
I wish I didn’t know about the dietary intervention, the biomed community and recovery.
I wish I didn’t know about Simpsonwood, the Lily Rider and the Interagency Autism Coordinating Community.
I wish I didn’t know about the Canary Party, The Thinking Moms’ Revolution and Generation Rescue.
We lost one of our therapy providers, so I got to work searching for a replacement. I asked local moms who they liked in our area and requested info from Ronan’s doctor for advice. When one group kept getting recommended over and over again I took that as a good thing and stopped by their clinic. I easily could have picked up the phone to ask my questions, but I like to see the environment where my child will spend the better portion of 2 hours of his already full week.
I was greeted warmly and shared my questions, concerns and thoughts about Ronan’s current needs with the young receptionist. I was quite pleased with the information I received after she answered my many questions. I felt confident that the referrals my friends and doctor gave would be a good fit for Ronan, and a date was picked a date for the initial evaluation appointment. I left the office with a stack of paperwork to fill out and went home to find all the documentation needed for that first appointment.
It was a few more days before I sat down with the forms from the receptionist. The top piece of paper had a list of items I needed to bring with me and Ronan went he went for his evaluation. I got started on collecting those items and then settled down to fill out the several pages of other forms. All looked typical of what other therapy providers would request: name, age, birth date, current diagnosis, list medications, any other treatments or therapies, a short prenatal and birth history section and finally a section on skills accomplished and skills being worked on. But, the last question on page 2 of the intake form had me raise my eyebrow. W-h-a-t? What is this? Really? Can they ask that? I decided to leave the question blank until the day of the appointment.
Ronan and I arrived at the clinic ten minutes early. I handed over some of the paperwork but waited to ask her my question. As she was organizing Ronan’s chart I took a second to flip the intake form to page 2 and to that section that threw me off. As we were passing papers and insurance cards back and forth I said, “Hey, I have a quick question. This section here (showing her the form), can you tell me why you want this info? It’s about vaccines and vaccine injury. I’ve never seen a question like that in any of our other therapy clinics.”
The receptionist looked up to answer, but a therapist was also sitting behind the counter and offered an answer, “We ask because we’re curious. It’s something we noticed happening more often so we keep track of that info.”
I looked behind me. Yep, she was talking to me. About vaccines. And vaccine injury. And that it happens! And that they know about it! I looked at the papers in my hand again. My eyes focused on that last question: “Has your child had a negative reaction to any vaccinations? If yes, please describe.” I scribbled down my answer and handed the now-completed form to the receptionist saying, “Thank you, thank you for noticing what is going on. Thank you for knowing kids like mine are out there. I am one of those parents who didn’t notice soon enough, and Ronan is ‘one of those’ kids. I’m absolutely stunned, but thankful, that you know what’s going on.”
The therapist went on, “We [she and the other therapists] have our own kids. Our kids are unvaccinated. We see what it’s done when kids like yours come in for therapy. It helps us as therapists to know that your child’s been affected, but it also helps us as parents.”
Wow. Was I dreaming?
Nope. She continued.
“We also like to know about vaccine reaction in case there’s an outbreak, you know like chicken pox or something that lots of kids might catch. It helps us prepare to help our own children and it lets you know that sicknesses are going around. We know it could be worse on kids with vaccine injury.”
Holy smokes! This gal knew vaccine injury!
An unlocked office door + unmanned computer + an incredibly-smart-yet-trapped-inside-his-body little boy = an unbelievable tale
Ronan likes to use the computer. He’s getting really good at turning it on and keeping it on (instead of turning it on/off, on/off, on/off because it doesn’t load fast enough for him). But, because he’s not so gentle with the computer I sit and work with him when he wants to use it. With his lack of patience and how busy our household is with four other children underfoot, Ronan finds other ways to get to the computer—usually sneaking in after the door has accidentally been left opened or unlocked. Ronan is really, really good at quickly typing Youtube into the search box, acting with lightning speed because he knows I will come running when I discover what he’s done. Ronan’s really, really, really good at quickly typing Baby Einstein in too (even though at the age of 9 ½ he should have moved on from this genre of movies). He’s not really good at keeping all of that on the down low though. Ronan gets so excited to see that green lizard puppet and lets off a loud tell-tale “I’VE MADE IT INTO THE OFFICE” squeal. That squeal is an instant alert which sends me running to make sure that Ronan’s hasn’t locked me out of the computer or caused it to crash.
Ronan’s latest office infiltration happened Wednesday evening. He’d had a fairly good day at school and a superb afternoon at home. The previous ten days were full of aggressive behaviors at school and with equally troubling issues at home. When a calm and peaceful Wednesday rolled around I felt like we were finally out of a rotten funk that hat started to drag both of us down. With a good school report and some fun playtime later with me, Wednesday turned out to be a glorious day. Ronan was engaged, confident, playful and really chatty. Even though real words weren’t coming out he was stringing a lot of new babbling sounds together. More exciting was that Ronan had inflection with each of these. I recognized his “Ahh dah doh?” with a small tilt in his head, with his arm outstretched and with his finger pointing directly to something. Questions were spilling out of him while his eyes locked onto mine. I labeled everything we saw in the hopes I was correctly answering his unintelligible question. Ronan signed what he could, or pointing again to the objects he wanted labeled, while I respond with the word. We did this for an hour. If Ronan smiled after I labeled something correctly, and then we fingerspelled the word together. Wednesday was full of back-and-forth exchanges and it was wonderful. Ronan even played with real toys unprompted and for several minutes. My heart was full. Yes, Wednesday was a great day. And it was glorious. Until it wasn’t.
After Ronan was done asking me a gazillion questions he went to the den. I watched him build a few towers with the LEGOs. He finished several puzzles, putting them back together with ease. Since he was settled and playing so well I walked to the kitchen to concentrate on making dinner. While I was two rooms away, Ronan left the den area and slipped into my office which I’d thought I’d locked. Things got quiet, too quiet, so I looked up to find the den vacant. I tore around the corner to find Ronan standing at the computer with his hand on the mouse. Looking at the screen I was not surprised when I saw ten Youtube windows open. Oh, Ronan! He moved his hand away, and I started to shut the windows down one by one. Veggie Tales. All of them. Wait a minute. No Baby Einstein!? Yay, he’s moved on to something new, and somewhat closer to his chronological age! But wait again, what’s this? One Youtube window looked very, very different. No cartoons. No Veggies. Definitely not a kid song. And not one I’d ever heard before. Nine Inch Nails. What?! How on earth?
Someone told me once that some of my writing sounds like I’m angry. While that is sometimes true I will say that my writing includes real stories. Those stories are from my personal experiences and those of my vaccine-injured son. They are full of honesty, emotion and 100% mine. Everything I write is original, and for the most part, is received well by other parents and those who support families such as mine.
I received a message that one of the most emotionally charged posts I have written to date called “Forgive and Forget?” was referenced a few days ago. My piece was so full of emotion that what I felt while writing that piece stayed with me through the week. I wrote a follow-up post titled “Old Wounds and Righteous Indignation”, written as the result of me having to cope with several triggers and another layer of emotion. I couldn’t suppress the feelings from those triggers, so I shared my thoughts in the hopes that could move through them. It worked. People responded to both posts and told me they too went through similar experiences. They thanked me for being so honest in my writing and to keep at it. That kind of feedback is typical from other parents, and I truly appreciate it.
But, why share such intense posts? Why bother putting Ronan’s story out there for so many to read? Why make public such private parts of my family’s life? I expose the highs and lows of many aspects of raising Ronan. I question what some consider controversial topics. I continuously contemplate what topic to write about next as a steady flow of ideas flood my thoughts daily. Since Ronan’s needs encompass much of my day I always consider writing about him. When I do write about Ronan it is always with love and devotion. So, why so some people question what I’ve shared as the honest truth?
Maybe because I’m just a parent. Maybe because I’m emotionally invested. But there’s a reason for that: it’s because I’m a parent.
I’m a parent whose emotion brought me strength I needed to piece together my child’s life. As it crumbled in front of me, I first found, and then drew on my own strength. Ronan’s life started to crumble in front of others too, but they didn’t see the need to react. I wouldn’t accept it when they surrendered their efforts and allowed Ronan to continue to flounder. When Ronan needed help the most I was offered nothing useful or hopeful. Instead I got answers like, “Let’s just wait and see,” and, “Don’t worry; he’ll catch up.” Then, when more time was wasted, “He’s going to be like this for a very, very long time,” because it was easier for them to do nothing than to admit they should be doing something.
No way was I going to allow someone to write off Ronan’s life like that. No way was I willing to say we’ve exhausted all options when “we” didn’t include me, my thoughts or my opinion. No way was I ready to let someone else make such dead-end decisions like that for child. I picked up where they left off. I had to. I did it because it was what I had to do as Ronan’s parent.
By Cathy Jameson (reprinted from 10/11, Cathy has the day off.)
Good grief, my kids can lay it on thick. I’ve got doom and gloom peering out from their bloodshot eyeballs. Why you ask? Well, we were recently exposed to some kids who had received the Flumist vaccine. Hours and hours and hours of contact, play time, meal time and chit chat occurred before I found out those children opted to have the live flu virus jammed up their nostrils earlier in the day. You might have heard the primal scream I let out when I returned to the quiet of my home after discovering this bit of news. I’m usually the eternal optimist. Not so much that day. I was cursing like a sailor instead.
I have five kids, one vaccine injured son and another boy with some immune system issues. I have three healthy daughters who most of the time have nary a sniffle. After the Flumist discovery, I declared a fortnight of no contact with those children I promise I won’t call potential mini virus spreaders. I hoped the two week time buffer would give me a chance to keep my kids free from exposure from the shedding a live-virus vaccine does once it enters the body. But, it was too late. Like a firing squad, one child at a time came down with fevers, coughs, the chills, achy joints and rotten attitudes. Antsy yet inconsolable greeted me for too many days in a row. Of course I blamed my kids’ sickness on the recent source we’d been exposed to—their playmates.
Before my kids got really sick, they retaliated to a two-week-free-from-the-Flumist-friends decree I made. “Why can’t we play with them? We promise not to get too close.” They begged. They bribed. “We’ll be extra nice and help you more if we can go play, okay?” I repeated the decree with a brief explanation as to why it was important to give us time and space away from them—we don’t want Ronan to get sick. If he catches the flu (or the “flu-like” symptoms lots of people encounter after receiving the flu shot) from these friends, it can really make him very sick. They understood that part, but there were still terribly ticked that I took two friends away so quickly. Oh, the looks I got. Ouch, that one from my oldest seared through my heart! She’d just befriended one of the girls. They’d planned more hours and hours of fun. “Please, oh, please, oh, please, achhhhoo, can I go over to see her again? I’ll be quick. Please?” I said no. I put my foot down and said no again with her pathetic plea, “Awww, Mom. Please? Just for a few minutes?” My other foot went down, NO. You don’t understand, and I’m sorry you think I’m the bad guy, but no. Wait a few weeks and then you can play. “WEEKS?!?!” Yes, I said, at least two weeks for their flu virus to do what it’s “supposed” to do and then you can play again.
Two weeks. A fortnight of frowny faces. The kids scowled in between napping off their aches, fevers and coughing all over the place. Oh, well. Mean Old Mom strikes again. It’s a title I’ve earned and one I plan on keeping close by.
As I watched my post last week being shared by other parents of affected children I could see that it evoked emotions similar to those that inspired me to write it. I had wanted to share the Forgive and Forget? thoughts for a very long time, but I hadn’t found the right time to do that. Last week, several unfortunate triggers brought out the deep, dark writing of that piece.
It wasn’t the first time I experienced the overwhelming rage those triggers evoked, and sadly it might not be the last time. I say that because I have had to turn to several people to aid me with my child. He has many limitations that I cannot serve as well as others say they can. Sometimes I have nowhere else to turn but other to people. But, when I place my child in the hands of someone else fully trusting their every intention to be good and then discover that my child was knowingly placed in harm’s way deep, dark anger has every right to step in. Not only does it step in. It takes over. It occupies every thought. And every purpose and action I am forced to make.
Detrimental emotions consume me when triggers open up old wounds. Sometimes I can work through the immediate and necessary changes that must be made, but not without some scarring. Those past ‘didn’t have to happen’ moments, as much I don’t want to dwell on them, are forefront again. So is something else: righteous indignation and all of its fury. It’s right there in front of me, constant and it comes down hard.
Righteous indignation is nothing to mess with. Parents whose children have been vaccine injured know this well. With seething eyes we set our gaze. We focus on one direction—forward. We blaze a path that will not divert. We stay determined and do not allow for distraction. Why? Because injustice is rampant. Lies are prolific. Propaganda is widespread. And, more children continue to be harmed in the name of ‘science’ and for a ‘greater good’.
How is any of that okay? When is this going to end? Why does anyone think they’ll get away with it? Who does this lying and deceiving thinking no one will notice?!
I’ll tell you who. It’s people who don’t care. People who don’t listen. People who won’t budge even though they know they should.
Why is this important to someone like me or to other parents with children similar to mine? Righteous indignation makes us stronger. It knows no limits. Righteous indignation fuels what has broken us. We can go no lower emotionally than we’ve already gone. We’ve fallen, no—been pushed into the depths of despair by someone whose role was to help. Not much can make up for that.
It isn’t possible when negative emotions stick around and cloud my thoughts.
It can’t be doled out quickly when constant reminders of an offense surround me.
As many times as I’ve thought about how to come to terms with my reality, finding forgiveness hasn’t been one of those things on my list of things to do.
To forgive and let it all the evils wash away—the guilt, the pain, the anxiety, the despair.
To forget and be free of those negative emotions that linger—the anger, the disappointment, the difficulty.
Can I really do that?
Can I truly forget how Ronan’s downward spiral began?
Can I honestly forgive the ills that brought Ronan to where
he is (and isn’t) today?
Can I totally look past the medical neglect we discovered only too late?
Can I completely overlook the medical abuse I didn’t recognize?
Can I fully embrace the life-long struggles Ronan may face?
How do I accept all of that?
Here’s what I can accept. I can accept that all of that did happen to my child, but I will not accept that it had to happen.
Here’s something else I haven’t been able to accept. Not because I turned it down but because this too hasn’t happened yet—no one has yet to apologize to my son for the opportunities he’s missed, for the childhood he’s lost, for the pain and the complete health he may never regain.
We’ve had a tough couple of months. It’s hard to pinpoint the rough patches on just one thing (not that I’m looking to blame any one thing on life’s difficulties). It’s worth it to point out that my husband is temporarily working far, far away to support our family. The kids were used to the one to two-week business trips Steve has had in the past, but when we found out he’d be gone for several months nothing could prepare any of us for that.
I’m not a good single parent, and Steve doesn’t like to be away from us. The kids adjusted as best they could, but still ached for their Daddy something fierce. I did too—marriage is a partnership for a reason. Phone calls, texts and Skype helped a little bit, but we all really wanted his extended time away to fast forward. We had an 8-month countdown started to when Steve would be back home, but mid-way through Steve had the opportunity to come home. He was thrilled with this news. I was thrilled. The kids didn’t find out right away because life’s plans are so unpredictable, so we decided to surprise them. I think you’ll agree that they are thrilled as well.
Littlest Sis’ biggest surprise:
We’re going off the grid for a few days to catch up, to be a family again and to be thankful to have time, precious, precious time together….I hope you don’t mind.
Cathy Jameson is Contributing Editor to Age of Autism.
“There is a road from the eye to heart that does not go through the intellect.”
-G. K. Chesterton
I had the luxury of going out by myself on a Saturday this summer. I could have gone anywhere or done anything. I was away from most of my responsibilities with several hours to spend as I wished. I ended up at a Target buying pull-ups for Ronan. So much for having some “me” time. I got out of the car and looked over my shoulder as I shut the car door. What would normally have been a quick glance turned into something else. I saw a young boy and his mother walking from their car to the entrance of the store. The boy was a little bit older than Ronan, maybe by one or two years. He looked typical, had dark wavy hair (like Ronan’s when it’s grown out) and seemed the type to enjoy sports and playing outside with his friends. He walked confidently next to his Mother. He looked toward me and stared. I couldn’t help but stare right back at him. Our eyes locked. A quick glance turned into a cold, long stare.
The kid was wearing a shirt I recognized instantly, and I couldn’t stop looking at it. It was the same shirt that Ronan has and is one of my favorites. It’s a soft dark, blue jersey t-shirt with a lighter blue collar. Ronan has been wearing his shirt a lot this summer. Seeing that shirt on another child triggered so many thoughts, questions and memories. I couldn’t break my stare, and for some reason, neither could the kid.
I got caught up in my thoughts as I stood there. The boy’s stare wasn’t filled with years’ worth of yearning for Ronan’s normal development like mine was. His was a fierce glare that screamed, “What are YOU looking at?” to which I would have meekly responded, “Do you know how lucky you are?” had we had the chance to speak. I was so caught up in my thoughts though that I was unable to move let alone speak to a stranger in the middle of a parking lot.
My eyes softened. His did as well as he slowed his pace while passing directly in front of me. I saw a piece of Ronan in this kid. I imagined Ronan a tad taller like he was. I imagined Ronan out with friends which this kid probably has plenty of. I imagined Ronan with me doing my errands and able to walk next to me like this kid was able to walk next to his mother. He wasn’t being clutched hand-in-hand to prevent bolting away in the parking lot but walked independently and confidently. As I watched the boy my mind filled with thoughts I could no longer stop. For being such a brief encounter it was incredibly intense. I was frozen in place with only my mind racing.
AutismOne: A Conversation of Hope
Noon Eastern, 9 am Pacific
A BEACON OF LIGHT FOR YOUR CHILD, with Dr. Mary Joann Lang and Edward Miguel
We hear so many stories from around the country of special ed programs not serving children well or – worse – putting children in danger. Few things give parents as much hope as a good school program with caring staff members who treat students with kindness and respect. Dr. Mary Joann Lang, founder, and Edward Miguel, chief operating officer, of Beacon Day School talk about the current model and future hopes for Beacon programs, including new technology, integrative education, support staff for children with medical issues, transitional needs, and the looming national crisis in adult care for individuals with autism. Dr. Lang will particularly address adult issues and explore thoughts for moving forward into a future with hope. Please visit www.beacondayschool.com.
Twice another. It’s how my four-year old daughter said three this summer. “I went under twice another times at the pool today!” Three times underwater to blow bubbles. “I saw it twice another times, Mommy!” Three times watching Ronan clear the table (without throwing his plate and spoon in the trash can but bringing it to the sink). She also smiled so proudly when Ronan correctly put away the silverware from the dishwasher twice another times in a row. Ronan’s amazing accomplishments deserve big smiles from everyone, including from his silly four-year old little sister.
Something else that’s been wonderful is that in the last three weeks Ronan has gone to Church with us twice another times. It’s truly a blessing. Ronan used to be able to go to Mass, but that was a very, very long time ago. Things were bad one Easter Sunday when Ronan threw up all over me as soon as we sat down in the pew. His digestion problems resulted in full blow-outs from both ends. Things got much worse for Ronan over that next year causing more delays and eventually the inability to stay for more than a few minutes before having to duck out the side door. Ronan became a loud, irritated, sensory-overloaded child who would have nothing to do with Church or any public outing for that matter.
Not willing to skip Church entirely, my husband and I planned our weekends so that I could go to the Saturday Vigil and he could go to the Sunday morning Mass. We juggled the rest of the kids to make sure all who were capable of participating at Church would attend. For many years Ronan wasn’t on that list, and it made me so sad to leave him behind weekly as the rest of us worshipped.
Living my faith is a big part of who I am. I’d be lost without the chance to pray, believe and celebrate at Mass. I was an altar server as a kid. I taught at a Catholic School when I grew up. As a stay-at-home Mom I couldn’t stay away from teaching or my Church community, so I volunteered to teach high school CCD. Saint storybooks, crucifixes and Rosaries are as much a part of my home as is the furniture throughout. Not having my entire family with me at Church makes me feel like I’m missing appendages. I’d pray and pray and pray when I could get to daily Mass on my own wondering how I was going to make this better. I’d pray for Ronan to please learn how to talk, to be able to play with his little brother and to be able to someday do normal things with us like go to Church again. We try several times a year to get to Church as a family, but inevitably as soon as the first note of the processional hymn was played Ronan and my husband would be in the parking lot for the next 58 minutes. It was just too much.
Since my husband was going to be gone for the entire summer I hired a sitter to watch Ronan so I could get most of us to Church on Sundays. It pained me even more to leave Ronan behind while I brought my other children with me. One weekend I was without any helpers, so I decided that that was the weekend things were going to change. If not then, when would it be the “right” time to take Ronan back to Mass? When could I ever expect to start formal training with Ronan so that he could learn about God, the saints and of course the importance of Mass? When would he ever be ready to receive the Sacraments if he didn’t start practicing how to sit and listen and deal with the sensory overload that usually stops him in his tracks? When? Well, the path to learning and rejoining his faith community was “twice another” weeks ago.
By Cathy Jameson
Today marks the day I brought my firstborn home from the hospital. Labor started on the 14th so after two days of hoping, wondering, praying and wishing my baby would hurry up and get here, she finally did. In the early afternoon on the 16th dreams of a lifetime came true. I’d taken care of so many other people’s children while babysitting, tutoring and teaching. I’d watched hundreds of children grow up over the years and knew someday I wanted my own. Being a Mom was more than just a wish. I felt it was a calling.
Best friends at Cat’s baby shower
From the day we discovered we were expecting, to the very moment of her birth, I’ll never forget that first pregnancy of mine. I’ll never forget about telling my husband we were expecting and how nervous and excited we both were. I’ll never forget (or wish to relive) going through the throes of constant morning/afternoon/night sickness every day for the first fourteen weeks. I’ll never forget experiencing the changes my body went through as my baby grew in my womb safe, protected and nourished. I’ll never forget the fear of actually having to give birth for the first time to a living, breathing, screaming newborn. I’ll never forget wondering why my Mother and my friends didn’t tell me how much it actually hurt to be in labor. I’ll never forget hearing my husband describe our child and how small and perfect she was. I’ll never forget the thoughts that overwhelmed me as I waited to hold her for the first time—thoughts that she’s here, she’s mine, she’s beautiful, now what? I’ll never forget that moment when the nurses handed my perfect bundle to me knowing that there was no turning back. I’ll never forget how exhilarating that moment was and how I can remember every detail even all these years later.
Two weeks old!
Eleven years. It doesn’t seem that long ago in some respects, but what has happened within those eleven years could fill volumes. My husband and I left the hospital with someone who has had to grow up with more responsibilities and expectations than many of her peers ever will. My child has had to witness and juggle things even we couldn’t anticipate as parents—to search for a brother who’s gone missing, to now be a few steps ahead of that brother making sure doors are locked to prevent another wandering and to always have one eye on or one ear open to where that brother is because he still has no clear concept of safety. No, her peers have no idea what it takes to be a support sibling. Peers will never know the screeches of a child in inconsolable pain. Those peers will never smell the stench of a diaper so foul it must be bagged, double bagged and triple bagged once removed. Her peers will never see the struggle that are sometimes daily but never shared. She’s been years ahead of her peers for a long time now. We pray she always will be.
I took my daughters to a walk-in clinic last summer to get their school physical forms filled out. I wanted to bypass the pediatrician’s office for a few reasons. The biggest reason was because it’s excruciatingly painful to sit and wait to see the doctor knowing I have a million other things to take care of on a daily basis. Another reason to go to the walk-in was because I thought surely the Doc in a Box place would be much faster. And, the third reason was because I didn’t want to hear the same textbook answer got from the pediatrician the year before about the vacant boxes on the girls’ vaccine records I must show as part of the exam.
As mother of five, my life is extremely busy. I have no time to sit and wait for someone to check off little boxes on a piece of paper stating that my healthy kids are healthy. Our schedule just doesn’t allow for that kind of sitting and waiting. But, since the paperwork needed to be completed I thought I would veer off the beaten path for what I’d hoped was a quicker option. (Note to self: Doc in a Box is not a short cut and has the potential to suck valuable time away from any family, including very busy ones.)
Just a few weeks prior, my husband had taken our typical son to a walk-in clinic for some foot pain he’d been experiencing. Since it was the weekend when the foot pain worsened, the walk-in was our only option. Just as they were about to walk out the door, I yelled out,” Hey, take the school physical form and see if you can get that done, too! Just tell them we’ve got the vaccine exemption paperwork so they don’t bug you about getting any shots today, okay?” Off they went.
A few (long) hours later my husband came home with our son. The foot was going to be fine. I hated to speed past the foot care information we were going to have to do for the next few days, but I couldn’t help myself and blurted out, “So, what did the doc say about the physical? About vaccines? About the exemption? You know we don’t need to be so nervous about that, but what a record we have with our other doctors. Sheesh, it’s like gearing up for battle every time one of the kids has to be seen, ‘Why are you here? What do you need? How many vaccines are we going to give them today?’ Come on, already. It’s like a broken record….” I cut myself off.
“Oh, sorry, honey. I’ll be quiet. What did the doctor said? Did you get the physical completed?”
My husband stood there and smiled knowing eventually I’d hop off my soapbox. “Well, it was actually really interesting,” he started.
“Interesting? How so? What did he say? Was it uncomfortable? Did you have to fight anything?” Oops. I closed my mouth, covered it with my hand and mumbled, “I’m sorry. I’ll let you tell the story.”
I sat down to listen and motioned for my husband to continue.
“Well, it was a female doctor, a grandmother in fact who was a family practice physician. She said the foot wasn’t so bad and showed me how to clean it. When that was done I asked if we could do the school physical. Since it was technically a different appointment we had to go back to the front, sign in again and wait to be called back. We were called back to the exam room a little bit later and started going over the form. When it was time to ask about the vaccines I told her we weren’t going to do them. She had looked at the vaccine record already and had offered to catch up on a few that were “missing”. I explained no, we have another son with mito disease who reacted badly to his shots. The doc looks right at me and said, ‘I have a grandson who has similar problems.’ Turns out he also has autism. This doc’s daughter, the boy’s mom thought the vaccines did something to the kid. This doctor helps the daughter now and understood why I said we were all set with vaccines. I didn’t have to fight her like you’ve had to fight doctors. She just said okay and moved onto the next part of the exam.”
Holy smokes! A doctor who is living near, breathing with, helping out and watching over her own grandson go through what Ronan does? Knowing I had other school physicals to get done I wanted so badly to jump in the car and get them taken care of that very afternoon by this promising open-minded doctor!
I had oodles of ideas swimming through my head for today’s AofA posts. In fact I had weeks to get this one ready because of some time off I had recently. I’ve been on sabbatical this summer with my five kids. My biggest goal was to focus on my family’s needs. Reruns of my “Best of” have been posted for the last few Sundays, so I walked away from the computer to recoup, to relax and to get some of my act together that had started to fall apart.
I needed to concentrate on important matters that hadn’t been properly addressed (one of my typicals started having school learning issues last year). I strived for better organization (“losing” papers I should have filed, misplacing my debit card yet again and running late every time we had to leave the house started to rule my days). I needed to put determination back into my step and commit myself to making some things easier for all of us (my energy levels were at their lowest low which resulted in canceled outings, pre-packaged meals and a cranky me). Oh, to have it all together! But, life got the best of me. (Again.)
Instead of jotting down some of those awesome writing ideas for today (or filing the paperwork, or putting the debit card immediately back into my wallet or leaving enough room to get out on time) my overworked brain couldn’t think beyond what was happening right in front of me at the very moment things were happening. Sure I still wrote some stuff, but there were the usual, mundane items like writing a check out for a bill, sending a couple of email updates to family, scribbling daily chore lists for the kids. I haven’t written anything reflective, charged or hopefully ever after in weeks. I missed writing. I missed it because this sabbatical reflected nothing of being a sabbatical. In the true sense of the word a sabbatical is taking leave of a position in order to provide rest or to acquire new skills. What I experienced was anything but!
My husband was scheduled to travel the entire summer which left me home alone with the kids. We have all hated the experience. HATED it. Every single one of us got sick (even hubby who was several thousands of miles away). A long-lasting viral infection took me and the kids down from July 4th through the rest of the month. A damaging storm contributed to the insanity when we lost all the food in the refrigerator (followed up with losing every last bit of my patience). We lost power during the storm and for 3 ½ days afterward which added more stress and difficulty to our situation. At the end of July my daughter was screened for some medical problems another (Ronan’s best mini-therapist) showed more struggles with attention issues. These latest concerns lead to more testing which uncovered vision problems that should have been picked up long ago but weren’t and need to be corrected now.
I overbooked appointments. I got lost trying to find some of those appointments. I made huge mistakes weekly with our busy schedule, and I had to force myself to push through distraught moments that triggered emotional messes where I thought surely I’d throw in the towel. I so wish I could have walked away from the madness. How I wanted to quit participating in our crappy summer completely.
There was no rest. There was no sabbatical. There was nothing new to learn. There was instead lots of testing of limits and pushing of buttons from my little people as they sensed my “could care less” attitude take over. As they overstepped their bounds I held my breath counting backwards from 10. I retreated from tense situations hoping to grip what few peaceful emotions I thought I still had in me. Some days we did preserve a bit of harmony like when we went to the library and Ronan remembered how to check out books with his siblings. Other days when nothing was peaceful, hopeful or helpful, I holed myself up in my office letting all manner of chaos fill the house on the other side of my closed door.
This was not a summer that compared to what I remembered great summer fun to be when I was a kid. It was not the one I had hoped to share with my kids either. I wanted to sit poolside watching all five swim like little fish. I wanted to have the neighborhood kids hang out with us. I wanted my kids to have movie marathons with popcorn on the weekends. I wanted easy days and easier nights. What happened was quite the opposite. We did see the pool, but only three times (and with our $150 membership each visit came to $50 a visit. Oof.) I shooed every neighborhood kid away at some point (while probably still wearing my pajamas past 3pm). I tucked my kids in as early as I could (as many nights as I could, too). Thinking I’d at least get some peace and quiet at the end of an annoying day when they were all tucked in backfired. The kids’ night-time shenanigans lasted several hours over several days over the course of several weeks. Like I said, it was a crappy summer.
Cathy is on summer sabbatical with her five children. This post ran last summer.
By Cathy Jameson
“If you are alive in 2011, no matter what your age, you have been part of one of the largest and worst experiments in history. No matter how carefully you eat or drink or watch your exposure to toxins, your body has chemicals in it that do not belong there and have the potential to make you ill, even fatally ill.”
From: The Great Global Poisoning Experience by John DeCock:
DeCock continues: “ … The Scientific American suggests that soaring rates of autism are linked to our constant exposure to toxics. Again, we pay an enormous emotional, practical and financial price to deal with the increase in this disease...”
Did my eyes just do a trick on me? I was not reading this from an “anti-____” (fill in the blank: government, vaccine, environment) blog. It was posted on July 15, 20011 on The Huffington Post. I’m not a big HuffPo reader, but the first paragraph of DeCock’s piece had me thirsty for more. So, I continued to read. I actually went back a good four or five times to reread the article. More bold statements are made further in the post. I invite you to read it. Go ahead. Read it again if you have to.
I first saw the link on Anne Dachel's website and was so moved by the article that I wanted to forward the piece to some people on my email/contact list. I started thinking about what I would say when I introduced the article because I like to include something personal about why I’m sending a story that I think is interesting:
Hi Family and Friends,
If you're alive in 2011 and don't know anything about what John DeCock is writing about, I hope it's because you're living on some piece of God's green Earth that hasn't been touched by mankind’s greed…or manipulated by Big Brother…or polluted by Big Pharma or Big Industry. I hope it’s because you have only eaten pure food that hasn’t been destroyed by toxins, antibiotics, pesticides or been altered from genetically modified techniques. I hope you have only breathed air that hasn’t known smog or smokestack emission. I hope you only touch water that has never been tainted by chemical spills or human waste. I hope it’s because your skin is clear of harmful ingredients now found in “health“-care products and pawned off to make us feel smoother, younger, softer. I hope your clothes are ones that are free of synthetics, irritants and formaldehyde. I pray your furniture and flooring aren’t off-gassing chemicals into your living spaces where you and your children eat, sleep and breathe. Oh, I’ll stop now. I’m dreaming up fantasies and probably torturing you. Just go read the article, okay?
If I said all of that in a quick email about the article, I wonder if I’d be looked at as Leader of the Wackos instead of just Cathy who is once again passing on what she thinks is good information.
As much as I want to solve my problems and contribute to solving the problems that plague the world, I also want to help those closest to me in life. I know not every friend or family member of mine has the same passion I do; life would get really boring if that were the case. No, we’re all a bit different bringing diverse opinions to each other’s lives. My differences blend with yours and in turn mix it up a bit for someone else. That allows us to see each other’s perspectives with a new view and maybe appreciate what we have and even what we don’t have.
Once a week, I try to watch one of my husband’s ‘must see’ television shows with him. I don’t like to watch “LOST” on my own since it’s got some freaky twists and turns in the plot and an eerie violin playing in the background for those cliff hanger scenes. I’ve come to enjoy the storyline but still have an unsettling feeling toward the characters that play the Others. They usually show up out of nowhere with an air about them that causes one either to distrust them or run like heck away from them. I want to get to know them better, but the creators of the show keep them hidden in the background of the main characters’ lives more often than not. Lately some days, I feel like my own neurotypical (NT) children are my own set of Others: characters in my life who through no fault of their own remain in the background.
Many of us float in the same boat feeling trapped on a deserted island like in “LOST.” Life as we once knew came screeching to a halt when our child succumbed to ill health, vaccine injury and a life full of medical care. We try to either come to grips with our new reality, or try desperately to hold onto a past life that keeps unraveling. While we deal with the changes brought on by the special needs child, we are forced to balance it with the life that hasn’t stopped: we are still a parent to the Others. These NT children, some older and more manageable, while others are younger and needier, still require round-the-clock care too. They may not be all encompassing as our vaccine-injured child is, but they do need us.
You’ll often find me tucked away in my office when I get a break from some household chores or in between home schooling. My son with special needs is in public school most of the day, so I get some time to be with my NT kids in the daylight hours. Instead of remembering to play with the kids—and wait to be a computer geek after the kids’ bedtime—I hide away for a quick Google search on vaccine injury + mitochondrial disease. Or I read the Warrior Mother blogs and check out a couple of Yahoo message boards before the Others find me. I try to buy some time with a quick click of the remote control and con the kids into some show on PBS while I bookmark a site to thoroughly read later.
I knew I needed to curb my time at the computer when my oldest daughter came in while I was researching again. We’ve explained to Fiona a little bit about what happened to Ronan, her six-year old non-verbal brother, but haven’t gone into many details nor labeled his problems as autistic. She does know that we believe his vaccines did something to Ronan, but she hasn’t questioned why he still can’t speak or use the bathroom on his own. Instead of complaining that Ronan can’t talk yet, Fiona has learned sign language to help her brother communicate better. My daughter is like me and tries to find something positive instead of dwelling on the negative.
Fiona and our other kids know we spend a lot of time with Ronan at the doctor’s offices looking for answers and for help—that’s ample time for them to get jealous while we’re away. I don’t blame them. Someday, when we decide it’s the right time, all of our children will be given the information they need to understand and help their brother. Until then, the Others get the very basic: Ronan can’t do things the same as you, so Mommy and Daddy have to help him a little bit more. Although the extra attention Ronan needs is obvious, I think it’s starting to wear thin on the Others. They are starting to ask questions, deep questions, and it’s time for bigger explanations.
Managing Editor's Note: Cathy Jameson is on a well deserved summer sabbatical with her five kids - so it's not really much of a sabbatical is it? :)
By Cathy Jameson
I have problems. They’re not going away.
I’m an addict and I’ve been in denial for many years. I hide behind labels while retreating with internal pain. I’m trying to change but it’s something beyond my control. Who am I? I am a parent of a child who falls on the autism spectrum disorder and I am scared. I am also tired. Somehow I am able to remain hopeful.
Several years ago, my son Ronan started to change. If I could rewind his early childhood years, I’d bring myself back to the summer of 2003. Ronan was seven months old and gorgeous. He was developing typically. Ronan lit up a room with his smile. He was chunky, tan, content, normal. He nursed well, ate even better, played and laughed all the time. That summer was the last summer I felt things were normal for both of us. A friend captured Ronan’s beautiful being on black and white film. It’s those baby pictures I love dearly as they remind me of who this child of mine was and should be.
The summer of 2003 was spent at the beach with stopovers to friends along the east coast. We relished the idea of having time off together, of being a typical family, living the good life now and having thoughts of us growing old with our kids. The only agenda we had was find time to see friends, relax, and watch our daughter Fiona, then 22 months, and Ronan play. We had new playgrounds to explore, different tastes to discover and the ocean air to breathe in. It was the perfect chance to watch time go by. Ronan learned how to roll and get into things like all normal babies do while Fiona found her love of dolls. We enjoyed two months of vacation and none of us wanted to go home to the regular routine of things. Toward the end of the summer, I slowly started to pack our bags, say our goodbyes and make plans to get back to real life. I had a list of things to do with one task I wish I’d never completed.
I’ll never forget the phone call I made just a few days before we left the beach. I called our local pediatrician to schedule Ronan’s next well-baby visit. He was nine months old and I clearly remember asking, “He’s due for his next round of shots, right?” I was a doting mother doing only what I had been told to do: I had a shot record for each child and had to fill in the boxes. I remember talking to the nurse, letting our small-town practice know we were on our way home and to please schedule Ronan in the following week so he could catch up on his shots. As we left the beach, heading south, Ronan was about to leave us mentally and physically.
Ronan’s health and development started to change, and not for the better. I had no idea what caused these changes but I recognized they were not normal. I knew the phrase “boys develop later than girls” could only explain a fraction of what I witnessed in my child. Over the next year, Ronan began to develop gastrointestinal problems, food intolerances, sleeping problems, language delays, gross motor/physical issues just to name a few. He couldn’t walk, couldn’t talk, had eating problems and started to have behavior issues. He was no longer the happy, contented, play-appropriately-with-toys child I once knew. He was an irritable, slow-to-do-and-learn blob. Something changed my child and I needed to know what it was.
Back then when it came to the Internet, I knew the simple basics and how to email. I visited only a few websites, none of them medical or health related. Beyond that, I had no interest in technology. The drive to find out what was wrong with Ronan turned me into a computer nerd. I had no idea what a search engine could do but I quickly found out how important a site like Google was. I was able to start thinking like a medical student, probing and hypothesizing and later researching every ailment children have. None of them fit Ronan’s profile.
Summer vacation is here! As grown up as I may look, I still find myself feeling giddy thinking about past summer vacations not only from my childhood but also from the time when I was a teacher. At this time of year I remember so clearly many happy memories of exploring new places, meeting up with old friends and taking time to stop and relax since there were no time clocks or deadlines waiting for me.
When I was a kid getting ready for summer vacation, I packed up my backpack, threw out old pencils and papers I didn’t need and hugged my teacher goodbye while skipping home to start an adventure with my neighborhood friends. As a teacher wrapping up a year full of elementary knowledge, I pulled posters off the bulletin boards. I gathered all of my personal supplies from my classroom and stored everything for another academic year in September. I felt as happy as my own students felt with a summer vacation countdown—I was full of excitement knowing that freedom was mine!
Now that I’m a Mom, I have a different outlook on summer vacation.