Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘vaccine debate

Trigger

with 8 comments

Trigger_mechanism

Image via Wikipedia

I have been reading some excellent blog posts by some great bloggers recently that have got me thinking, which is the whole point, I suppose.  Firstly, Laura at Life in the House That Asperger Built gave her take on the recent news that the court case involving a girl with a rare mitochondrial disorder developed symptoms of autism following vaccinations had been settled in her favour.  I’ve talked about the fear I felt when I took Cubby for his MMR, but Laura gives an informative and analytical post that is the antithesis of my wishy-washy vague approach to the whole vaccine debate.  It is excellent.

Then in Welcome to the Mad House, my friend Fi talks about her take on the issue of environmental triggers.  And again here.  It is both tongue-in-cheek and fascinating.  There subsequently followed a very interesting discussion in the comments about autism, anxiety and the influences of environmental factors.  While I firmly believe that Pudding’s ASD is a result of genetics, that she was born this way, at the same time I do think that there was also an environmental trigger.  If I think that she had an environmental trigger for her variety of autism, that does mean I’m open to the idea that there are other triggers, and other varieties of autism too.  There probably is an allergic kind, a premature/ difficult birth kind, an autoimmune kind, and other exposures too that would tip the balance in somebody already genetically prediposed.

So what is Pudding’s story?  For the first 18 months to 2 years of her life, she developed just like other kids her age.  She met her milestones right on target, and never gave her pediatrician any cause for concern.  Having said that, from birth she was a sensory seeker, she was demanding, and her language developed in a different way to her peers.  Pudding was a happy kid though, living a calm life where she was number one, and had all the attention she wished for.  Spectrummy Daddy and I both feel that had things remained that way, we would have continued living in blissful ignorance of Pudding’s differences until she began school, or possibly even later.

That wasn’t to be though.  Cubby was born a few months after she turned two, and suddenly life changed for her.  Here was a screaming infant whose cries hurt her ears, and took attention away from her.  No longer was mummy providing the same level of stimulation and attention, and when she got bored, she got herself into trouble.  To make matters worse, a few weeks later we moved, leaving behind everything that was comfortable and familiar to her.  It was too much.  She couldn’t sleep by herself, and would wake up screaming several times a night.  She would spin and pace around in circles.  She would flap her hands, repeat phrases over and over.  She was fearful of everybody but myself and her daddy.  She needed to be told what has happening all the time, or she became terrified.  She required complete control over her environment and possession.  She would line up her toys. Instead of playing with other children at the playground, she would get in their personal space, and touch their hair.  It was autism, almost overnight, or so it seemed at the time.  For 2 year-old pudding, this level of anxiety was the trigger.  I think that anxiety in this particular situation is a perfectly normal and understandable reaction, but back then I couldn’t distinguish between autism and anxiety.  A year later, I can see that this was anxiety, and for Pudding already predisposed to autism, this was the trigger for her.  As life has become more settled, so has she.  She hasn’t lined up toys in almost a year.  She is far less controlling over her possessions, though she does still like to know where people are going, and what is expected to happen.

I’ll always wonder what would have happened if we hadn’t moved.  If she was older, would she have been better able to handle things.  Or would there have been something else, sooner or later, that would have caused her anxiety which would have tipped the balance.  We’ll never know.

I do know that if I’d known beforehand that Pudding was on the spectrum, I’d have handled our move in an entirely different way.  If you’re wondering (as I have many, many times) why we continue in this lifestyle with such overwhelming changes with a child who had such anxiety as a result, I’ll tell you why.  I joined a group with other Foreign Service Parents of children with special educational needs.  There are a lot of us (was this the trigger for their kids too, or does this lifestyle attract people with certain genetic traits?) in this same situation.  I explained how we were struggling financially to do a domestic tour, but terrified of how Pudding would handle an overseas assignment.  I got wonderful advice from people in the exact same situation.  Who helped me realize that overseas we’d be supported, that we’d be able to create a tailor-made education for Pudding to make the most of her strengths, and assist with her weaknesses.  I’d be able to get the therapeutic assistance she needs.  That the reasons why we always believed in a nomadic lifestyle for our children are still valid, the diagnosis doesn’t change that.

One mother I spoke to has a teenage daughter with Asperger’s who told me that she thinks moving has enabled her to become more flexible, resilient and social (!), required it in a way that a static upbringing would not have allowed.  I have to hope that the same is true for my kids.  Cubby will be the same age as Pudding was when we next move- will this prove to be his trigger too?

Advertisements

Fear you have to live with

with 4 comments

I write this post with a certain amount of trepidation.   For those on the outside who may not be aware, the topic of vaccines is the most divisive in the autism community. It can pit parents against those on the spectrum, and against other parents.  It puts the scientific and medical community against alternative providers and the people who use them.  I hate this division, there are bigger things to fight than one another.  So I don’t really want to write about this debate. I’ve read a lot on both sides, and both make compelling arguments.  There may be different kinds of autism, not just in severity of challenges, but in varieties too.  Some may be genetic, some may be toxin-caused, and some may be a mixture of both.  There may yet well be an as yet undiscovered auto-immune element to autism that will vindicate both sides. I don’t know, I may never know.   I just have to make the decision for our family, because we have Cubby, and last week we had his appointment for his MMR.

When we look back at how Pudding was as an infant, before she even had any vaccinations (she was born in Europe, different vaccine schedule) she was intense, required more sensory stimulation than other babies.  Of course, I didn’t know that then, but it has become more developed over time.  There are family traits that can’t be ignored.   She never had an adverse reaction to her vaccines.  Everything points to her variety of autism being inherited.   Don’t get me wrong, I still went through the process of blaming myself for some unknown event during my pregnancy or her infancy, but the evidence just wasn’t there.  I just think she was born with this neurological difference, I don’t think her brain was damaged by toxins.  I fully appreciate, however, that this isn’t the case for everybody.

So the rational part of my brain had no qualms about taking Cubby for his MMR. I thought of the evidence.  I considered the opinions of medical professionals I trust.  No problem.

Except…Fear isn’t rational.  It takes facts and evidence and turns them upside-down.   And when I was in the room waiting for the nurse to come back in, I worried about if I’d got it wrong.  I was thinking of accounts I’d read about children who were typically developing until they got the MMR, and the child they knew disappeared.  I was thinking about how it would feel if this was one day revealed to be the cause.  What if he developed a more severe disability than his sister?  The answer is, we’d accept it.  We’d live with it.  I thought I’d got over blaming myself, but here I am, still thinking that something I do could affect his outcome negatively.   Am I ever going to stop doing that? Spectrummy Daddy and I had discussed it, and concluded that we needed to give him the shot, but Spectrummy Daddy was at work.  I resented that I had to be there, that ultimately it was down to my say-so.  So it was just me, Fear, and my two beautiful but quirky kids in that room.  I would do anything to save those kids from harm, and with Fear in the room, I felt they were about to be attacked.

Cubby had his vaccines, but I didn’t defeat Fear.  There is something every parent is more afraid of than autism.  There has already been a reemergence of measles.  It can be fatal, particularly in less developed countries, like the ones we might potentially move to next year.  If I made the choice not to vaccinate, and the worst happened, I couldn’t live with it.  When the rational part of me was gone, and I’m left with fear on all sides, there could only be one choice.  I went with the one I can live with.

Now that Fear has moved on, and I’m back to being my somewhat rational self, I find I can live very well with my decision.  Fear has definitely overstayed its welcome though.  It is time it found somewhere else to live.

Written by Spectrummy Mummy

August 26, 2010 at 7:02 am