Becoming An Advocate

I’ve spoken somewhat peripherally about vaccines over the last few years. I’ve written my feelings about injury and reaction, how disturbing I find the lack of coverage to be and it’s no secret how I feel about what is going on in California right now, as I regularly voice my strong opinion against mandated vaccines.  I am not entirely against them, I appreciate the reality that they exist and while I understand and am thankful that they do protect thousands of people, I absolutely do NOT feel anyone should be forced to receive them against their will or their parent’s will.  I also feel there is a lack of accountability for manufactures of the products and the blame that should be held over them is often instead, unjustly held over parents.  I’m pretty vocal about that, but I’ve never really explained what my deal is personally or why this is such an important thing to me.  Well, I’ve decided to let the cat outta the bag and come clean about this.  The truth is, I don’t vaccinate my children anymore.  I haven’t in 2 years.  I know I will probably lose friends over this post, but I decided I needed to make a choice to either stay silent or become an advocate.  Our reality is, my oldest child falls under the category of “the ones you should get vaccinated to protect” because he should not get them.  Unfortunately, the government doesn’t agree, so we are one of many families on the fringe and about to become outlaws if everyone has their say here in California.

Mainly, I’ll be honest here; my silence is because I kept terrible records and I worry that when people question my choices, my lack of verifiable proof will have them rolling their eyes. It’s all a little fuzzy and I feel embarrassed because I didn’t document each occurrence as I aught to have.  I how foolish I might seem to those I respect.  The thing that is the most frustrating, is just because the government doesn’t think it’s a “real” injury doesn’t make it true.

Of course I wish I’d written it all down as it happened, but it didn’t occur to me then that I’d need day by day accounts to prove anything, y’know?  We were in the midst of it then and so much was going on… I was a new mom, still cutting my teeth on all this “standing up for my beliefs” thing.  This was all long before I posted a photo of myself nursing my baby girl, long before I got brave enough to write a 5 page rant about the history of breastfeeding.  I was new.  I had postpartum.  I didn’t know what I was doing and I lived every day in fear.  I had other things going on, is my point… so I didn’t keep great records.

The early vaccines were met with minimal reaction; heat at the site, mild fever, sleeping for 10 hours, all things they said were normal but felt like a nightmare to live through.  As he grew, his reactions were more prominent.  He reacted more severely at 6 months, then again at 9 months then again at 13 months and then at some point around 15/18 months.  I think after 6 months was the 14 hour crying episode… or maybe that was the sleeping for 12 hours and 102 fever that took me 4 days to break which was instantly followed by a terrible flu.

After one of them, I remember his eyes wouldn’t focus for a long time.  He kept them half closed and seemed drowsy for days.  He’d always been an strong “eye contact during nursing” baby and then suddenly that stopped.  I thought it was my fault because I’d spent a lot of time on Facebook while nursing and not enough time connecting with him, so I stopped doing it and he never really regained the ability to keep or hold eye contact and he still can’t do it for more than like 2 seconds.  It was a while later, maybe another few months after, before I realized the connection between the lack of eye-contact and when it stopped.  When he does look in my eyes, he’s not looking at me he’s looking at his reflection in my eyes. 

After a different series of shots, he stopped crawling. He’d just learned how and was zipping all over, but after that, he didn’t want to go anywhere and he seemed sad.  He was agitated and got frustrated with things suddenly, turned from being the super happy sunshine baby into the brooding baby who scowled all the time.  I put him back in his Baby Einsteins exersaucer toy that he’d all but given up because it made him sit still because he no longer wanted to move around.  I was worried, but no one else was.  They all looked at him and dismissed my concerns, “he seems fine, don’t worry so much”.  When he began walking at 10 months after not wanting to move anywhere at all for such a long time, everyone said, “see he’s FINE! you worried for nothing!!  Silly first time mom, stop reading the internet….” But once he could walk, he started the spinning and staring blankly at blinking lights and rolling around on the floor in front of the dish washer when it turned on.

After his 1 year shots… that’s when the banging his head on things started and watching Christmas lights out of the corners of his eyes and making up noises to go along with the blinking lights but no words.  He couldn’t say any words at all and wouldn’t point, clap or do anything on command.  Everyone told me, “oh he’s probably just got a headache or a stuffy head, babies bang their heads when they are sick sometimes”.  But he wasn’t sick, I’d say… and they would just shrug and say something dismissive like, “Oh I’m sure it’s fine”.  When he bangs his head so hard the pictures fall off the walls… yeah, it’s TOTALLY okay, why on earth would I be concerned??

After one of the sets somewhere between 13 and 15 months, (I don’t remember exactly when) he didn’t have any sort of immediate reaction other than being lethargic, clingy and cried if I put him down.  Basically, he turned back into a 3 month old and did nothing but sleep and breastfeed all day. Within 2 days of those shots, the clingy, whining, crying turned into screaming.  What seemed like terrible stomach pain; cramping with him curled up in a ball on the floor sobbing and screaming, seemed to just take over his whole body.  It wasn’t gas, not allergy, not constipation, just horrible pain.  He cried and cried like he was being ripped apart for over 6 hours and finally I took him to the ER where they thought he was having an appendix flair up.  When it wasn’t appendicitis, the doctor told me it was probably related to the vaccines he had been given just days before.  He told me to put him on the “brat” diet and remove gluten, anything artificial for a week and make sure he nursed as much as possible.  He told me, “even if he eats nothing, drinks nothing, make sure he’s nursing”.  So, that’s what I did.  He also told me to enter his name and information into the VAERS site and to stop getting whatever vaccines he had received that time around. He told me it felt it was a vaccine reaction, but because the CDC makes it so hard to meet all the criteria for what they consider a “true” reaction, he won’t qualify for a proper exemption.  “Thankfully”, he said… “it’s legal in California to receive a personal beliefs exemption to protect children like your son who have clearly reacted but don’t meet the full criteria to be given an exception.”  Sounded easy enough… (Of course now everything is turning on its head here in California law regarding vaccines, so who knows what the future holds.) 

After that, he started to mentally “check out” and just zone off into space or get lost in a TV show, mirror or even staring at a bright light.  He wouldn’t respond to his name and he wouldn’t acknowledge new sounds, but we knew his hearing was fine. He also stopped eating anything except white rice, plain yogurt, strawberries and eggs and suddenly seemed to react to certain foods and food dyes.  He’d had a rich diet of dark, leafy greens, black beans, brown & black rice, meats, many different types of veggies, grains and fruits, but after that episode, he refused all of it and to this day, still struggles with diet.  Around this time, as well was when he stopped wanting to draw or color, his coordination with holding writing tools seemed stunted, almost like he regressed.  Eventually, he wouldn’t even take a marker to paper, no matter what color or design was printed and the idea of painting made him cry out of frustration.  I have literally spent the last 3 1/2 years trying to increase his food options and I gave up on painting or coloring until this summer when we started again in preparation for TK.

After the food, the motor skills, the head banging and the fixation with lights and sounds, that’s when I secretly contacted a friend who has a deep understanding of these behaviors and would know what to do.  She told me to make a list of all his behaviors, missed milestones, strange occurrences, anything I felt was off or unusual.  Once I saw it all written out on paper, I was even more concerned and more clear about it.  I called the Inland Regional Center for an appointment because I thought, if I can get a professional to back me up, maybe then my family will believe me… that he reacted to the vaccines because each behavior, each new thing that happened, consistently manifested after shots within 3-5 days.  Each time, he either cried for hours and hours and hours, had massive fevers for days, or over-sleeping in a deep, dangerous feeling sleep for like 10 hours, would react at the site with huge bulging welts that were red and hot for days after, not to mention the fact that he would become a literal disease factory for weeks after each one, catching every single virus that floated by until finally I stopped getting them.  I was so frustrated; my healthy, exclusively breastfed baby was sick every 4 weeks with something new even though we didn’t go anywhere.  

I think I stopped somewhere just before his 2 year shots… but I’d have to go back and look to make sure.  It’s all so fuzzy to me now I don’t remember which time was which issue anymore.  I had tried to keep a log but I was so busy I never had time to sit down and do it and with everyone telling me I was being foolish for worrying in the first place, I tended to not be as careful with my documentation as I should have been.

So, maybe vaccines don’t cause autism and maybe my son would be experiencing all these issues even without the help of a vaccine, but it has been documented that for some, vaccine reaction/intolerance/allergy can sometimes draw out or kickstart behaviors that a person may have had a predisposition for.  We already know vaccines can cause reactions that result in developmental delay, processing disorders and other neurological and motor skill hardships but cannot be classified under any specific disorder.  This is not speculation, it’s right on the vaccine inserts and anyone can read them for themselves. Currently per year, over $300,000 billion is paid out to American families who suffer severe reaction resulting in life-changing disability and/or death.  If you consider this reality alongside how difficult it is to prove vaccine reaction, consider for a moment how many more people may be afflicted that we cannot document because they don’t qualify. The potential is staggering.

I wish I’d known about the blood/brain barrier issue before having babies.  I’d have at least waited till they were 1 before starting vaccines simply because we have so many “brain things” going on in our family history.  As it was, he only got 2 at a time… and like 2 months apart, never back to back.  I was so careful, until…  

It was the one time I had to take him to county because my insurance got screwy because of COBRA, (they double dosed him with one he’d already gotten 3 months prior AND gave him one he wasn’t old enough to get and I didn’t realize until we left) and then again when the doctor told me I was going to subject him to life threatening viruses that could kill him by taking him to Disneyland unvaccinated.  He knew I had postpartum and he told me “how much worse will you feel about things, how much more anxiety will you have knowing he could get sick and die because you are listening to all this unfounded hype”.  So, he scared me into getting him caught up.  He told me, “get him caught up before Christmas. You can give him everything he needs to be safe today and then you won’t have to worry about it again for a long time.  Don’t risk a tragedy over the holiday, get them done now.”  So I did.

I think he had 5 or 6 that day.  Not vaccines, INJECTIONS.  Two in each leg, plus one up the nose.  It was too many.  I knew it was too many.  The nurse did, too.  But the doctor had terrified me and told me it was fine and for once, I believed the guy who had more letters after his name than I did.  I felt stupid and small, I felt weak and confused.  Looking back, I feel even more stupid for allowing him to manipulate my emotions like that.  Like, how could I have ever been so stupid?  I walked into my son’s first appointment with my Dr Sears book on vaccines and directly stated my desires; Alternative schedule.  Limited list.  One injection at a time.  No doubling up.  Space them out, only one per appointment.  His primary care said that was absolutely fine.  But the doctor who bullied me wasn’t his primary care.  He was his backup and I thought I liked him because he was younger, spoke casually, had a great rapport with the baby and really seemed to make sense.  He was one of those guys that could probably sell ice to an Eskimo and I totally abandoned my own beliefs and wishes because he scared the tar out of me that day.

So that’s what started it.  Did he truly experience vaccine injury which lead to his developmental/cognitive delays and the challenges we are now dealing with?  We do have ADHD, Aspergers, Tourettes, dyslexia and OCD in our family, so it’s not like we don’t have our fair share of processing issues to choose from wandering around in our DNA…  Some would say there is no conclusive evidence to point clearly to one determination or the other, yet there are a few medical professionals who back up the “very strong likelihood” that this is the case.  If they did not “cause” these issues, they very likely triggered them into being.

Where we are now, in case you’re wondering, is a whole separate entry – coming soon.

If I have learned anything in this last five years, it’s that my children deserve to know that I am strong in my convictions. They deserve a mom who doesn’t second guess herself every step of the way because she’s too concerned with what others might think of her.

I can never regret where I am, who my child has become and where we are as a family because, not to brag, but, we are pretty amazing.  Sure, I wish I’d never been bullied into going against my intuition.  Sure, the same people who said “trust you gut” were the same people telling me how the “collateral damage” of an occasional reaction or death due to vaccines was acceptable if it protected everyone else and that was hard knowing what happens to so many is looked upon so selfishly by others.

People ask me, “aren’t you worried they could catch a terrible disease?” YES is the answer.  A resounding, terrible yes.  Always.  I am always afraid of that.  But do I risk the potential damage to their bodies and brains for a potential virus?  How do you decide?  How does one choose a preferred form of terribleness?  If he had never had any sort of reaction or neurological challenge whatsoever, I’m absolutely certain both of them would be fully vaccinated, but that unfortunately is not our lives.  Our lives include a beautiful child who absolutely suffers when he is vaccinated and I don’t want the same thing to happen to his sister, so we don’t get them anymore.  If the government would do more to protect those who suffer from reactions, if they set up testing that could be done BEFORE vaccines were given, if they could ensure vaccines were effective and 100% guaranteed WORTH IT to get them, maybe more of us moms on the edge wouldn’t feel this way, but that’s a whole different article for another day.

If you ever felt like you knew the right thing for yourself or your child and you wanted to cave because of pressure, you know how I felt then and sometimes still feel now.  It could be breastfeeding, co-sleeping, discipline, schooling, going against conventional, convenient, society-accepting parenting processes in any form.  To pick up that torch and walk into the dark cave when everyone is telling you how much nicer it is sitting out on the grass with everyone else is hard for so many reasons in so many ways and if you felt bullied, belittled or shamed for doing what you knew was right, please take my experience as a warning to stop allowing others to dictate your parenting process.  Do Not Do It.  Trust yourself.  Trust that your connection with that baby is stronger than anyone else’s outside opinion and do what you know is right for YOUR baby.  If something feels off, awkward or not a good fit, LEAVE/STOP/CHANGE – NOW.  Your babies need you to be courageous and passionate.  YOU need you to be strong in your convictions.  Be as strong as your children believe you are and go to bat for their safety, their joy and their quality of life.  Be strong, pray about it, meditate and do what you know is the right thing to do.

Just to be clear – I’m not saying you should stop vaccinating your children or change your feeding, sleeping and discipline processes.  I’m saying – listen to your heart, be attentive to your baby… watch their cues and find the courage to be their shepherd no matter what the storm.  Be strong enough to do what is right for your child even when it is inconvenient, scary or against the grain.

I’d love to hear some of your stories.  How have you changed, since becoming a parent, to advocate for your children?  What causes have you taken up in their name?  For me, normalizing breastfeeding, overcoming agism, gentle parenting and the parental right to informed consent before allowing vaccines were the big ones.



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s