Valerie Foley

We’re here and we have cameras…

In Action, Parent issues, Perceptions on April 5, 2013 at 11:17 am

This week, while co-incidentally basking in the blue light that tells the world there’s nothing serious going on, we transferred all our baby home movies onto a hard drive at home.

We’re both quite fond of our technology, and as media professionals, we are never far from a video camera. Unlike a lot of people, this was also the case back in 2003 when we brought Billy into the world.

A significant amount of time has passed since then, both in units of time and in units of significance.

In the first few years of our lives with autism, we heard a story a lot. It came from the mouths of doctors and therapists mostly. They said, ‘The fact that autism becomes apparent around 2 years of age is because the demands of life outstrip the child’s in-born capacities’. Hilariously (in retrospect), we bought that piece of spin. In fact, we didn’t just buy it, we took it home and swallowed it like so much Kool-Aid.

We were told that being first time parents, we would have missed the subtle signs that something was amiss in our son. We were told that our memories of a child who connected, and reciprocated and obliterated milestones of all kinds were coloured by grief. We were told we just thought he was OK because we didn’t know any better and because we told ourselves he was.

The stench from these statements has been permeating our lives for a long time. It’s got stronger and stronger. This week, it was blown away by a gust of evidence.

We have hours of video of Billy from birth to now. Birth to 4 was on DV tape, which is why we hadn’t looked at it much. This week, we looked at it. And what we saw is remarkable.

Let me preface the explanation of how remarkable, by saying a couple of things.

– I don’t believe all autism is the same.
– I don’t believe all autistic people gain the label at the same time or in the same way.
– I don’t believe autism is anything more than a descriptor (and a scapegoat, but that’s a whole other post).
– I’m not telling the universal one and only story of autism here, just our view as one of many.

Having said that, here is what we saw in our videos.

There is nothing related to the autism triad in Billy in his first 12 months. He is communicating, reciprocating, engaging, exploring, connecting, investing, accumulating, accepting… he is not lacking anything. He is not struggling. He is a normally developing baby.

He is not what he became.

If anything, our memories have been tarnished by the pronouncements of the doctors. We had convinced ourselves that he must have been ‘autistic’ all along. That the demands of being a one year old outstripped his little being’s capacity.

It didn’t. He lost what he had. It’s clear as day. And it’s all on video.

You can see the day when he stopped responding. He has a rubella rash on his face, gained courtesy of the MMR (‘It’s OK, Mum, about 5% of kids get rubella from the MMR. Calm down.’ ). He’s transfixed by his own reflection. He can’t pull himself away from looking into his own beautiful eyes.

The gaps between the laughter got longer. The furrow in his baby brow deepened. The connection between him and non-essential personnel fractured.

We know, now, that Billy has vulnerabilities. We know, because it has been acknowledged officially by the medical profession that his system is easily triggered into… reactivity, crisis, medical collapse. We’ve seen it too many times (vaccine reactions, drug reactions, transverse myelitis, pesticide induced seizures) and we are very very keen to understand how we can avoid further crises.

We suspect he was born with those vulnerabilities, unseen by us and his doctors, at the time.

We suspect he is not alone.

We are not rocket scientists, and we are not saying anything that other people haven’t said.

The difference is, we have video that proves we are not crazy.

The gift of the Apple generation is documentation. We all have it. More and more we have it. And as gut-wrenching as it is to trawl through footage highlighting, in shining relief, what has been taken from your child… it is there.

I am backing myself. I am backing my child. Something happened. We don’t know what or how, but something happened. Something is happening.

Yes, we are hurt. Yes, we are grieving. Yes, we are angry as hell. Rather than clouding our reason, these things sharpen our perception and focus our resolve. It’s not about statistics. It’s about our kids.

We get arrested if we fail to stop at the scene of a car crash.

Letting the autism epidemic unfold without questioning it, is just wrong.

If it doesn’t involve you now, bless your good fortune, because it will soon.

We need to know what is causing this thing called autism. We need to know how to treat it. We need to know how to stop it. We need to hold each and every responsible person accountable for what-ever-the-hell is going on. Doing nothing is no longer an option.

We can’t be fooled into thinking there’s nothing we can do. We can grow an ear on the back of a rat. We can understand this. We have millions of witnesses.

We are here, and we have cameras.

  1. I believe you. x

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