Wednesday, July 20, 2011
If there's one thing most autism parents share, it's experiencing a gnawing feeling in your gut, telling you that something isn't quite right with your treasured beautiful child. Some of us felt it before birth, some of us felt it once schooling hit, some of us felt it somewhere in between.
For many of us, it was the point where we felt a whole new us growing. The growly warrior lion Mama version of ourselves started to take shape, as we hugged our tiny kids as if we could use their little bodies to squish the gnawing feeling away.
Then, we grabbed their little hands and we started the rounds of doctors and therapists and those odd experiences where you walked into someone's rooms and went, 'Oh man, this place sucks' and spent the whole time trying to plan a graceful exit.
In our family, we could see that the 'outside world', the place where we lived, loved and thrived, was massively stressful to Billy. As a foetus he covered his eyes and ears from the ultrasound. As a baby he cried when anyone raised their voices (no matter what their emotional state). As a pre-schooler he hid in the back of the room. As a primary school kid, he was sick more than not as he struggled to function in a noisy classroom.
No medical professional ever encouraged us to follow our instinct to protect him from the things that stressed him. In fact, they recommended the opposite. Despite their suggestions (which we were forced to try), we have fought, all his life, for the right to respect his need for calm, security and personal safety.
All parents have the lion tendency. I really believe that being a special needs parent, and especially an autism parent, brings out a whole new set of protective (sometimes angry, often innovative ) instincts. And this is why.
If we compared the dynamic body of information we have about expected child development to the actual concrete irrefutable knowledge we have about autism, we'd be comparing the Encyclopaedia Britannica with an Archie comic. By which I mean (should you be confused, as many are by my ravings) we do not know much about autism at all. And much of what we do 'know' is verging on the comical.
If one more person says to me, 'But haven't they proven vaccines and autism are unrelated' (insert any other nugget of autism related information if you wish), I will start random punching. Or I will scare that person by asking questions like, 'Who are they exactly?' and 'What do you mean by proven?' and 'Do you believe everything you read on Facebook, 'cos I'm fairly sure that the Dad who got the shock of his life or the vision of the baby being born that supposedly no-one can watch more than 25 seconds of, is actually 'true'. Then for a final conversational wrap up, I will invite them to prepare a dissertation on their favourite definition of the word 'truth'... while I walk away and make a stiff gin and tonic (I need to research how to stiffen gin, but I'm sure the truth is out there somewhere on the internet).
Every doctor we see has a different, and generally strident opinion on all things autism. It makes it rather fun when you take your child in for a consultation. In the six odd years we've been doing this, it is the exception (as opposed to the rule) that I've walked out of a doctor's office going, 'What an inspiration, that doctor really cares/knows something/changed my mind.' Generally speaking, the first rule of Doctor Club is 'Dismiss what parent is saying.' You don't need to be Brad Pitt to work out the second rule.
I go in with multiple questions, and I watch their eyes glaze over with fear, judgement or anger. I see them looking for my tin foil hat (Doctor says: what do you mean you don't use cleaning chemicals... what's your problem with nitrous oxide... fluoride is great stuff). I hear the tone of their voice shift when I ask that my son's blindingly obvious heath issues could use some sustained, ongoing attention (Doctor says: yeah, kids with autism often vomit for sensory stimulation... don't you know kids with autism get more gastro upsets than other kids cos they're always eating sticks and stuff... oh, yeah, he's withholding poo because he's learned you'll help him anyway). I watch their faces go red as they tell me to calm down, and accept that my hospitalised child is perfectly capable of sleeping alone in a shared ward without a parent there, with the TV turned off and with a pre-prepared hospital 'meal' for nourishment.
Some try, some fight, some use helpful vague phrases like, 'The interaction between the body, the brain and the environment is a complex one.'
And you know what? I'm OK with the vague phrases.
Because the way I see it (and experience it) in the world of autism we are struggling for any kind of absolute. We have some diagnostic criteria, a vast variety of behavioural and health manifestations and a bunch of theories. I reckon we are stretching it to call them theories. Maybe guidelines. Some things that work for some people. Helpful hints, that may be relevant to your child or not.
Big picture, we have splintered studies, funded and supported by niche sectors of health and education backing up the efficacy of one approach or another. We have people in the various camps of the autism community making their claims and slamming the other camps and their views. We have adults living with autism sharing the wisdom and courage of their lived experience, and parent warriors leading the information dissemination charge from their chosen standpoint. All laudable pursuits, and all different in philosophy, approach and recommendation.
We also have an ever growing series of autism industries building up around a variety of premises and promises - cure, recovery, change, social success, mainstreaming, detoxing, neuro-plasticity, focus, compliance etc etc, all of whom are oddly strident in their belief that this is the thing that will help your family. Most interesting, some genuine, all lucrative for someone.
And we have an ever growing generation of kids - people, with autism. All with parents by their sides who want nothing more than 'the best' for their kids. Except there's no consensus on the best. And if you scratch the surface of someone who claims to know the best, their stream of words runs out pretty quick - especially when you try to match what you know of your individual child to their recommendations.
So what do we do...?
We listen to our instincts. Remember those old chestnuts? The things that, way back when, helped us out of that uncomfortable squishy make-it-go away hug and toward the world of diagnosis.
This week, Billy was massively sick again. Vomiting green bile for 36 hours. His GI doctor says it it somehow related to his gut dysfunction and we need to start the process of having a look inside (contrast imaging and scopes - ahoy!) He says these episodes Billy is having (we've just finished the 4th in two months) are likely to be stress related and that we should consider keeping him as de-stressed as possible.
For six odd years (some way odder that others) we have said, 'The intense sensory assault of this world makes our kid sick.' This week, while Billy vomited bile, someone medical finally agreed with us.
It's not the be all and end all, but it might just be a start.
To the therapists who recommended hard core behavioural therapy to 'teach' Billy to be comfortable around other kids - bite me.
To the neurologist who suggested that our major children's hospital was not the Hilton Hotel when I asked for him to be removed from a room shared with babies - bite me.
To the teacher who chose to interpret Billy's absences from school as parental neglect and not a manifestation of stress induced illness - bite me.
And if you won't bite me, bite Dr Poo... hardly a pleasant sounding prospect.
We have a child who can't crap without drugs, who vomits bile after a visit to an indoor play centre, who needs medication to share an aeroplane with a baby... we didn't ask for it, we didn't make it happen and we don't want this to be the way it is forever. No matter what anyone else may choose to think.
We have to follow our instincts because that is all we have. We are not alone in this. Every day, in every way other autism parents are trying to put their kids first as well.
In the face of an education system that will allow an aspiring actress to access supported homeschool services but will not allow a child with autism to negotiate an ongoing flexible schooling arrangement. In the face of a health system that is adamant that their is no such thing as 'autistic pathology'. In the face of a government that deems families no longer need support in caring for their autistic children past seven years of age (and yes, I know we are lucky here in Australia to be able to access such support in the 'early years', it's just slightly inconvenient that autistic kids actually grow up).
Forgive my ranting, I am slightly sleep deprived (and bile stained). Just know that your instincts are likely very, very good and you will need your gin to be very, very stiff.
Whatever that means.
Posted by Valerie Foley at 8:24 PM