Age of Autism Weekly Wrap: When Occupation Is Causation
Will Wonders Never Cease?

Best Of: Fool Me Once

Lucy-footballBy Cathy Jameson

Tomorrow, June 2,  is Little Buddy's birthday.  I am grateful for the blessing that he is to our family.  Little Buddy's biggest wish is not for more LEGO toys or to be able to spend all day playing with friends.  His birthday wish has always been dedicated to Ronan. So are all of the daily prayers that Little Buddy says. I share those wishes with Little Buddy and also pray for the day that Ronan will catch up, that he will talk and that he will want to play along side his devoted little brother.  Happy Birthday, Little Buddy.  You are a treasure! 

Fool me once, shame on me.  Fool me twice, shame on you.

I often write about my son Ronan here.  He’s my inspiration and the reason I work so hard in the autism community.  Ronan, despite the many obstacles he faces, reminds me to stay ever hopeful.  He is why I keep writing. 

I could very easily take advantage of writing about the new autism numbers, how the math really doesn’t add up, that there are far more affected than being reported because the data from the statistics are four years old or that truly, the new rate is very alarming.  But I’m done thinking about the rates for today.  Letting those numbers swim in my head (which, by the way is 1 in 88 children and 1 in 54 boys) for the last three days has done nothing good.  My eyes are puffy from crying on and off for two days straight as I thought about all the children affected.  I’ve had to scrape myself off the floor after watching some news reports that don’t question WHY the rates are so high.  I haven’t been able to concentrate on the house, my kids or even myself because of those numbers.  I’m honestly a mess, but I need to share something else today. 

Today I’m going to reflect on the 1 in my house and how because of that 1, because of what happened to him, that 1 helped save a life. 

My 1.  

I don’t usually share this story.  Not because I’m hiding it.  In fact I’m quite proud and grateful beyond words.  I don’t share it because even though a life was saved, I had to jump right back in to managing the repercussions of Ronan’s life as it continued to unravel. 

Ronan will still be in the limelight of the story.  That goes without saying.  But the cast of characters today includes this other life.  You’ll read what happened to that life and what I learned from it all.  Ronan probably has no idea how heroic he is, but because of Ronan his little brother, my other son, escaped what I think could have been similar fate. 

Because of Ronan Little Buddy narrowly escaped harm from his own vaccine injury. 

The setting?  2004-present.  The scene?  Our home.  The plot?  It doth thicken.  The antagonist?  Vaccines.  The outcome?  Read through to the end.  It is time to share this story. 

Boys Will Be Boys

I had just started to hear about something called thimerosal when Ronan was almost two-years old and while I was pregnant with Little Buddy.  But, since I hadn’t read too much about it before I dismissed it as one of those chemistry-type words I hated.  We were in the process of remodeling our home and putting it on the market so my computer time was limited.  Days were filled with nesting, cleaning up several house projects or chasing Ronan who was not yet walking but managed to get into everything.  Doctors weren’t alarmed by Ronan’s lack of development, and back then I trusted implicitly what the doctors said. 

But, I was somewhat alarmed about Ronan and thought maybe I should be more alarmed.  I was so naïve.  I was waiting for Ronan to outgrow his immature skills.  I was told boys develop slower than girls.  He’s got time, no need to worry.  But something wasn’t right.  I need Ronan to catch up before the baby was born. I couldn’t do this thing with Ronan with a newborn.  I kept asking what I think were the right questions to the people I sought out but got nothing helpful in return.  I was pregnant, and tired, and chasing a kid with issues which seemed to be invisible to the very people who should be noticing them.  Ronan would be fine, right?  I was too trusting.  And, I was tired.  Mom, take care of yourself.  Don’t worry.  He’ll catch up. 

I couldn’t do much research by the time Little Buddy was due. Fatigue set in and sitting for long hours at the computer while big, fat and pregnant just wasn’t working.  I had at least decided I would not be injecting some vaccines into my children because some of them didn’t seem right to use.  I’d come across a list of vaccines that were created from aborted fetal cells.  That decision to not allow those into my kids should’ve reduced some of the vaccines Ronan and his soon-to-be little brother.  But I had just become research savvy and found alternative vaccines not made with the aborted fetal cells and requested those instead. While continuing to follow part of the recommended vaccine schedule Ronan continued to stagnate with his skills.  He didn’t look the poster child of a child with autism.  So, I carried on. 

Ronan didn’t fit the criteria to the degree many children now do.  He did worry me though.  He started to change as time went on, after certain “well-baby” appointments.  When he began to slip ever so slowly away I made time to sit at the computer as uncomfortable as it was.  I bought books that described vaccines, why they were created, what was in them and how they can affect the body.  These facts were riveting.  Those facts were also startling, but not enough for me to say no way altogether. 

While reading everything I could get my hands on I had just discovered the logic behind a birth plan and that opting out of standard hospital procedures was possible, to include the Hepatitis b vaccine.  I was on the fence about some vaccines, but not all of them.  Part of the recommended one-size-fits-all vaccine schedule still made sense.  It was so much to take in.  Little Buddy was due in just days.  I didn’t know what to do.  I had to at least come up with a plan, and then figure out how to stick with it. 

Stick to the Plan

The birth plan.  Plan it out.  Stick to it. 

But, plans can change.  People get pushy.  They don’t want to help.  Other people cave and say okay.    Unfortunately, I was the one that caved. 

The day of the birth.  I’m nervous.  My husband is nervous.  We make it to the hospital.  It’s going to be another c-section.  Paperwork is prepared while all manner of nurses, technicians and medical staff bustle in and out of the room.  Lying on the hospital bed, in my altogether, about to be examined the head nurse (who really should’ve been called Nurse Ratchet due to her right-from-the-start pissy attitude) began the litany of “this is what we’re going to do to you so be quiet and listen” routine.  I’d gone over in my head what I wanted to do, what I expected from the hospital and how I would respond to their procedures.  I tried to keep my plan simple.  The nurse thought otherwise.

Then I started to make my request. 

I said no thank you to the eye goo (no eye goo (Erythromycin) needed for a c-section birth as the baby is nowhere near the birth canal; plus hubby and I are not sleeping around catching STDs thankyouverymuch) and asked that that please be documented for the delivery team.  That request went over well so I continued.  I asked about the “mandatory” Hepatitis b vaccine that was on the nurse’s list.  Unfortunately I had a hand inside me measuring my cervix when Nurse Ratchet decided she didn’t want to hear anything more. 

My husband and I had agreed that we didn’t think that vaccine a necessary one.  What little we knew about it (that is was typically administered to prevent a sexually transmitted disease) gave us enough reason to just say no.  Naked on a table, getting ready to give birth I was then assaulted with “there’s not enough evidence” and “it’s how we do things” and “you don’t want to go there” about refusing to vaccinate.  Being schooled on science, disease and death by people dressed up in scrubs “who do this every day” got the better of me.  I caved.  I was made to feel like I was doing something wrong. 

Another nurse had walked in and teamed up with Nurse Ratchet.  I asked, “What would make it necessary for a baby to have this vaccine when they’ve just been born?  How are they going to be immediately at risk?”  They tag-team replied, “Well, you never know.  You’re here at a hospital where there’s germs and…and…infection….and…and one of us could stick ourselves and bleed on your baby…and then infect your brand new baby.  You don’t want to risk his health, do you?  DO YOU?” 

My internal exam was over as was my will to fight the vaccine issue.  I signed the consent form when the fingers were removed and I was able to sit up. Little Buddy would be vaccinated against my better judgment.  Strike 1.

The first few months, and up to his first birthday with Little Buddy are a blur.  I barely remember his baby days because I was starting to become very consumed with Ronan who was still not getting better.  What I remember about Little Buddy are flashes, events that are depicted in the few baby pictures I did remember to take.  Other moments are the ones I remember and think, “My gosh!  I was so blind.” Little Buddy was my number two son, but he was starting to act like my 1.

One of the first flags that waved for Little Buddy (but I failed to recognize it) was the sensory issues.  Little Buddy was breast fed.  He was great at it.  But, he hated to be held.  He didn’t want me to touch him.  He had to figure out how he was going to tolerate me holding him while he drank.  How I thought this was normal is ridiculous to me now.  The minute he was done being fed and burped Little Buddy wriggled out of my arms as quickly as he could to get away.  Strike 2. 

Fast forward a few months.  Little Buddy started to get rashes.  Viral rashes.  They were weird.  They were happening frequently.  They didn’t make sense to me.  But, they were “part of normal baby’s development” that started after his “well-baby” visits.   What I’d get in return for asking about these odd rashes was, “Here’s a script for some antibiotics to make it all better.”  Chronic viral rashes.  Not bacterial.  Loaded up on antibiotics.  Strike 3.

Throughout the next year I foolishly administered Little Buddy’s many courses of antibiotics.  While desperately trying to get a grip on Ronan’s spiraling issues, I had missed Little Buddy’s gut disbyosis and new-found sensory issues that mimicked Ronan’s.  Ronan was slipping further away though.  He was farther from typical development at this point which consumed every minute of my day.  It wasn’t until I looked at Little Buddy while my two boys went through weeks and weeks of diarrhea that I thought, “Wait a minute.  This isn’t right. Little Buddy is not talking.”  Ronan had spoken, he had words, he used words.  It was over time that Ronan lost his speech.  Little Buddy was turning two and only babbled.  I couldn’t recall a time that he had said one word clearly.  Ever.  You’re Out. 

Fool Me Once

I will venture a guess and say that yes, family history and a genetic predisposition combined with vaccine ingredients, along with frequent, heavy doses of antibiotics can further intensify the reaction the body might have when vaccinated.  Ronan was the Perfect Storm.  Little Buddy was another storm cell brewing all around me waiting for me to take notice.  Thank God I did notice. 

Around the same time I woke up to that fact, and because now Ronan was falling closer to the spectrum than I wanted to believe, I started to pore over my boys’ medical records.  I will never forget the day I connected all the dots.  It was a Thursday night.  I was upstairs in our family room.  I had just reviewed Ronan’s medical reports, old calendars and a journal I’d attempted to write in daily when the boys were younger.  Going over what I thought was “the evidence” I discovered that my theory of “if this…then that” (fill in VACCINES for this and SOMETHING TERRIBLY WRONG for that) was true.  Then I looked at Little Buddy’s records.  Again, the evidence could not be denied. 

My boys were affected. 

First, I stopped everything.  Make that second….first I cried and threw the medical files on the floor. I shoved everything I was reading on the floor.  I yelled.  I kicked and screamed. 

And, then I said no more.

When 1 Could Very Easily Have Become 2                   

What to do? What to do?!  I knew exactly what to do!  I delayed the vaccine schedule until I could fully understand it and figure out how to weigh more evidence—for either pro or con.  Then, I got to work on fixing what was falling apart in front of my eyes.  With all the evaluations and testing Ronan and I had gone through, and with what I continued to pursue for Ronan, I had a rolodex of names and numbers at my finger tips.  People remembered me.  They knew Ronan.  They immediately agreed to help. 

And so it begins.

Little Buddy followed brother’s footsteps in many respects, but began to take greater leaps than Ronan.  He would be one of the lucky ones.  Little Buddy broke free from his silence.  After two years of speech therapy, implementing the GF/CF diet, reaching out to a DAN! doctor and starting a course of supplements and environmental changes to ease some of the damage done to his body, Little Buddy emerged.  He had always been a happy baby, but now he was a happy and chatty child.  He could talk.  He could play with toys.  He wasn’t so skittish and wanted to be hugged, tickled and snuggled with.  He was going from sick and distraught to alive again and delightful. 

Fool Me Twice

Ronan saved a life, the life of his little brother.  As much as I am pained daily to know that Ronan still struggles, when I see Little Buddy I am in awe that he bounced back.  Little Buddy talks a lot now.  I want to tell him to shut up because he talks just so much.  But I remember he almost wasn’t one of the lucky ones.  Little Buddy suffered too.  Life was difficult for him.  He too had obstacles and hurtles to maneuver.  One day, about 3 ½ years ago I asked Little Buddy if he remembered when he couldn’t talk.  He said yes.  I asked, “Can you tell me why you couldn’t talk?”  He said, “My tummy hurt too much.”  I asked him this question a few more times over a period of time to see if he was making that up.  His response was always the same--he said his tummy hurt.  It hurt to think and he couldn’t get his words out. 

And, some doctors still say that a gut-brain connection doesn’t exist.  If only they really knew. 

Little Buddy has defied the odds and is proof that too many too soon can be incredibly detrimental.  Over the years he’s learned more about vaccines, what they can do for you and what they can do to you.   He was truly upset to learn about Ronan and what happened to him when he and my other children started to ask why Ronan was a little bit different and why he couldn’t talk.  From what he’s witnessed to how desperately he wants other children to heal, Little Buddy has earned the right to say, “It isn’t fair.”

It just isn’t fair. 

Where Love Prevails and Prayers Are Begged

Last week Little Buddy and I were at the doctor’s office.  One of his questions was, “Does this doctor do vaccines, Mommy?”  I looked up from the paperwork I was filling out, smiled and said, “Nope.”  He smiled right back at me and continued to play with the waiting room toys.  I then asked him a few questions.  One of the forms I was filling out for his appointment asked for the child’s input.  Since it was our first visit for this check up, the questions were more extensive.  I called Little Buddy over, and he sat next to me.  I said, “Hey, this question is for you. ‘Do you have any fears?’”  He looked at me quizzically.  I said, “Are you afraid of anything?”  “Oh, yeah,” he replied.  “Snakes and spiders!”  “Ugh, me too!” I said.  He and I laughed together talking about what we’d do if saw some at the doctor’s office.

“Next question ‘Do you worry about anything?’”  Little Buddy looked down.  I was heartbroken.  We talk a lot.  He talks a lot. I’ve learned so much from this child and yet I didn’t think he’d ever have a worry to worry about.  He instantly thought of his worries though.  I knew he was afraid of things, but being afraid of something that can go away (spiders and snakes), is far different than worrying about something.  Worrying can last for a long time.  I know this because I have worries of my own.  But, why does a 7-year old child have to worry? 

I didn’t want to make him uncomfortable, so I said, “You worry?  You worry about stuff?  Can you tell me?”  He nodded.  Three worries popped out.  Three things that make his heart hurt and his mind worry.  My sweet, sweet child. 

Little Buddy worries for a young life recently lost.  He worries for his Daddy who travels for work.  He worries for Ronan because he’s afraid Ronan will get sicker and not be able to get well.  Three worries.  Three sadnesses.  Three not fairs.

We talked a little bit more after I gave him a big hug.  I told Little Buddy how wonderful he was to think about other people, to want things to be better for them, and for promising to pray for them.  He tells me who he’s praying for all the time.  Every morning his prayer is for one of those three worries.  Every night it’s all of those three worries.  But because Little Buddy is so hopeful he is always tries to come up with something positive to make those worries turn around.

Little Buddy asks for intercessory prayers from that life lost. 

Little Buddy asks that Daddy to please travel safely so when he comes home they can build cool stuff together.

Little Buddy prays that the injustices done to Ronan to one day be fixed.  He prays that Ronan will talk again.  He prays that Ronan will want to play LEGOs with him.  He prays that Ronan not get sick anymore and to please only get better.  He prays for us as a family because he so badly wants us all not to worry about Ronan because we do. 

To all of that, today and forever I say Amen. 

Cathy Jameson is a Contributing Editor for Age of Autism.

 

Comments

Theresa 66


Amen, Cathy. To healing and hope, Amen.

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