Autism’s April Showers

MamacitaSince April started Ronan’s dealt with a sickness, more seizures and major changes to his school routine. Each of those incidents were reminders of how fragile my son’s health is. Being able to lean on Ronan’s support team allowed me to work through some of the changes and difficulties that arose, but staying completely strong through some of the darkness wasn’t happening.

Outside of my personal world, online trolls and vicious attacks toward informed parents who’ve opted to educate themselves on vaccine safety was on the rise. I got a handful of vitriolic remarks thrown my way from mean-spirited strangers because I believe vaccines have something to do with autism.

April was turning out to be a rotten month in my home as well as toward the autismblanket
community. With how things were turning out, I wanted to quickly ditch April and skip right over to May 1st. Or at least hide under a blankie like TMR’s Booty Kicker sometimes jokes about.

I knew I couldn’t hide though.  Too much still needs to be done.

I had two options:  pretend everything would magically work out or figure out how to deal with every overwhelming, tiring and annoying issue I was facing.

 

I chose the latter.

buttercup

 

First things first.  I had to deal with myself and the awful attitude I’d allowed to settle in.  Walking around with a scowl on my face and feeling depressed was not working.  Changing my outlook wasn’t going to happen overnight, but letting go of the negativity I was holding onto was possible.  I just had to actually do that in order to move forward.

First to do was to let go of the extra frustration I’d felt from the intense online attacks our community has seen in recent weeks.  It hurt to have harsh remarks lobbed my way and in the manner in which they kept coming.  I know that people all over the world have opinions.  It doesn’t matter if it’s politics, religion, medicine or cookies.  People like what they like. They support what they support because they believe what they believe.  It’s part of what makes the world go round.  But the attacks I and other parents were fielding were overwhelming.  Running and hiding from the internet trolls wasn’t an option I wanted to consider, so I stopped and thought differently about the incredibly charged debate being waged.  Here’s what I concluded.

We’ve ticked off an army of hate.  We’re obviously making other people squirm, and rightly so.  By asking what are very simple questions we’re putting paid mouthpieces into a position they cannot logically or truthfully defend.  Parents, many of whom have no monetary interest, as the people vehemently guarding the vaccine industry do, are making clear statements about autism, about vaccines and about the little resources being made available to our children.  Not only that, but by boldly speaking up, the statements so many parents are making are backed up not only by logic and truth but with compelling and heart wrenching factual stories of their children.  Silent observers to the online attacks, those who’ve witnessed some of us being verbally assaulted, and who are also on the fence about vaccinating their children, are reaching out to us behind the scene.  They are asking for clarification and requesting information on where they can start their own research.  In the process they’re now raising questions that those who oppose us don’t want to answer.  We’re getting the average parent to think.  I’ll say that’s a good thing!

happyfacesSeeing the flip side of the current smear campaign made me remember that sometimes you have to take the good with the bad.  Thinking about that turned my frown upside down.

Next was to bring some semblance of order to the major changes that have happened in my own child’s life.

Ronan’s health has tanked causing an increase in fatigue.  He’s getting support from his providers for which I am grateful, but nothing has made things entirely better or easier for him.  It is so hard to see Ronan be so tired, so frustrated and, on some days, so weak.  I’ve caught myself feeling very down in the dumps several days in a row.  My thoughts have been clouded with more “What ifs” than I’d ever allowed myself to think before.   Since I’m still trudging through, trying to figure out how to make things better for Ronan, it’s taken a lot for me to stay focused on what I can do to help instead of bemoaning why, oh, why does this have to happen to my child.  He didn’t deserve this.  He shouldn’t have to struggle as he does.

But Ronan does struggle, and it affects every aspect of his life.  Because of that, I struggle too.

I don’t know how to make it better just yet for Ronan, but I’m finding it helpful to go back to my early days when Ronan first got sick.  I’m thinking like a scientist prayingagain.  I’m reading like a researcher, and I’m looking at every angle like an investigator would.   If I can put the pieces back together, if I can determine what the trigger is, if I can lessen the offensive whatever-it-was that has caused Ronan to spiral downward, I know I would feel more confident that things will improve.  But, nothing is making complete sense just yet, so I’ve dedicated time to reading, to looking things up, to asking questions of those who want my son to heal and, of course, to praying like Ronan’s life depends on it.

I know I’m not alone in what has happened lately, both personally and within our community.  But I do know that when I choose to change how I view what’s been placed in front of me, I am better focused.   As far as what’s going on elsewhere that will affect our community’s efforts, if we’re going to do one thing this long month of April, we’ve got to bring the focus back to the kids and to the families who need help.  We’ve got to take care of each other.  We’ve got to remember to accept and respect that we all have our own opinions, especially when it comes to certain aspects and arguments surrounding autism.  When that happens, instead of drawing attention away from the causes we all hold so deeply in our hearts, the focus can turn back to those who have brought us together:  our kids.  They are why we work so hard.  They are who inspire us.  Let’s let their light lead our way, not negativity that might creep in on the tough, tough days, sparked by those whose purpose is to derail our every good intention.

sunset

 

~Mamacita

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9 Responses to Autism’s April Showers

  1. Love the suck it up buttercup, that rocks! Sometimes we just have to keep moving forward one step at a time, Happy Easter!

  2. Antoinette says:

    Thank you for this post. Our son is doing tons better since seeing a chiropractor that believes autism, ADD and ADHD can be helped when focusing on their necks! We’ve had one visit each week for three weeks now.

    But right before then, we had our own bit of a downward spiral. And it hurts. And frustration sets in… But you are so right, Mamacita. There’s really no choice but to go back. That whole scientist, researcher and investigator comment so resonated with me! And we go back to old methods and we try new ones. And we never ever give up. Is there a beautiful side to autism? Oh, you betcha. For us, we never take any day or achievement from our son for granted. We know what it’s like to live in that world and then recover and step out of it. And then backslide a bit. And then leap forward. It’s an amazing dance, really.

  3. nhokkanen says:

    Your column is good medicine for other parents of vaccine-injured children. I hope you are able to speedily discover a successful treatment for Ronan, or find someone who has the information you need.

    Another site is discussing “The Hate Debate.” It’s a long read, but well worth it.
    http://www.livingwhole.org/the-hate-debate/

    Sad that autism parents must keep reminding people that compassion, not condemnation, is what our families need.

  4. Anna says:

    Not a mom of an autistic child, but I religiously read your blogs and fb page because the information is so informative. My 17 yo daughter is recovering from serious mono (.7 is the marker, her blood level was 7.7…because it took forever to give her the EBV test (insurance costs). She spent two years struggling w/ anxiety, depression, missed school, etc. that I believe is because of it. She had her 18 yo physical the other day, and I questioned the doctors before they gave her any immunizations. I did not let them give her the HPV shot and let her get the booster for meningitis (although I questioned it in my mind the entire time)…I should have listened to the little bird in my head (and to all of your amazing stories). After weeks of feeling great (minimal anxiety, completing schoolwork and being happy), she woke up the day after the shot loaded w/ anxiety again. She missed school most of this week and is not herself again. I should have listened to myself and not given her the booster shot, and wonder what would have happened had I not been reading all of your information and let her have the HPV vaccine also. So when things are getting tough, please remember that there are people listening and learning from everything that you and your group of “thinking moms” write!

  5. Lynn says:

    KEEP ON KEEPING ON!!!! You gals rock!!!

  6. Donna Powers says:

    Wish I could convey to you how much I appreciate your work and the work of TMR. I can’t even begin to fathom what your day to day is like. Then to dig into the science…again. Research I can do if that helps. Today I posted on FB an article by Solomon Lawrence
    http://business.financialpost.com/2014/04/16/lawrence-solomon-the-untold-story-of-measles/
    And…if measles virus is in the brain it is SSPE (Subacute Slerosing Panencephalitis), would it be possible that a measles virus could be there because of a vaccine (MMR). Yep. Here’s some more research.
    “We believe that the present report is the first to clearly
    demonstrate that severe neurological disease can be caused by
    the vaccine strain of measles virus. The risk of such a serious
    adverse event must be balanced by the rarity of such an event
    and the overwhelming evidence supporting the efficacy of the
    vaccine in reducing the morbidity and mortality associated with
    measles. It is significant that our patient was found to suffer
    from a profound deficiency of CD8 cells as well as dysgammaglobulinemia,
    which were not suspected clinically at the
    time of vaccination.
    Most significant primary immunodeficiency states in children
    will be detected before the age of MMR vaccination, and
    for such children live virus vaccines should be avoided.
    Clearly, a serious outcome such as occurred for this patient is
    an exceedingly rare event, and this report should not lead to
    changes in current immunization practices.”
    http://cid.oxfordjournals.org/content/29/4/855.full.pdf

    What you do each and every is making a difference. Sending love across the internet and the ether. You have a mighty band of thinkers and believers beside you…on the difficult days, when all is obscured like dark clouds on a gloomy day, there is light above.
    Donna

  7. Jan says:

    ooops sorry, it’s early. meant to say “when OUR kids aren’t doing well”

  8. Jan says:

    I’m sorry to hear Ronan is going through such a hard time. It SUCKS when are kids aren’t doing well and it’s so hard not to get down when you just want it to all GO AWAY!!
    As for the mud slingers, I have been thinking the exact same thing. The louder and more pissed off they get the more I think that the educated masses ARE making important headway. Almost reminds me of a child throwing a tantrum, when they hear that maybe they aren’t going to get their way. We have to keep plugging along and like Andrew Wakefield said we have to get the people on the fence.
    Here’s hoping the rest of April is a lot sunnier!

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