Wednesday, July 25, 2012

Why do I let this happen?

We are into the guts of Billy's CBT program now. And when I use the word guts, I use it deliberately.

The initial weeks of the program were about helping Billy understand what anxiety is, and giving him tools to handle that anxiety. It's been really effective. He gained a lot, and utilised it gleefully in his daily life.

This week we started to deal with Billy's actual anxieties, which are all specific sound related.

And, in today's session, we hurtled backwards in time.

The first time we thought something was 'going  on' with Billy was when he was one month old. We took him to the supermarket, and some friends stopped us to admire our beautiful new baby. As they spoke, they crashed a trolley into the stack of trolleys near the shop's entrance. Billy stiffened like he never had before, and cried like he'd been hit. (He hadn't).

When he was 11 months old. We took Billy to a birthday party, where a young boy (ironically with Aspergers) took great delight in whooping like an old school cowboys and indians movie soundtrack. Billy, who was then and remains, the Dalai Lama, cried like he'd been crushed in a vice.

When Billy was almost two, I took him to a playgroup. Kids of the same age, ran around him. He watched with interest until two of them crashed into each other and started to cry loudly. Billy cried like he'd been knocked over.

I could recall incident after incident, but trust me that sitting in the psych's office today, and seeing him succumb to an hour's worth of pressure to handle the possibility of dog barking was like watching my child fall off a net-less trampoline in slow-mo on YouTube.

We have not followed a conventional path through autism related therapy.

We have not followed the path laid out for most families in Australia (EI, OT, ST, ABA, satellite class,  mainstream school with support, mysterious loss of symptomology and speculative acceptance of the captaincy of the football team) because Billy was not comfortable on that path.

He cried when he was placed in groups of children. He got sick the more we made him spend time with large groups of children. He became intensely stressed when we forced him to pretend to be just like the NT kids.

Neither of us felt comfortable forcing him through hoops that were clearly painful. We observed other children who coped just fine. We saw some kids who had transient anxiety and 'got over it. We saw many children with impairments in communication and social skills show their discomfort with their lot by screaming, biting and tantrumming.We did not want that for our child, who was already struggling with a life threatening demyelinating condition.

So we pulled him away.

We did Sensory Integration therapy. We taught him at home while he did reduced pre-school hours. We carefully chose a small supposedly compassionate community school who we believed would protect him.

The wheels fell off slightly when that school made the choice to misinterpret Billy's stress and illness as parental neglect. It didn't take long to fix this, by lawyering up and deciding to home school.

The simple solution, to us, was to respond to our son's needs, and do things in a way that was manageable to him.

His defining impairment, a spectacular hearing sensitivity, confounded everyone until last year when an ENT did a bunch of diagnostic tests and came up with a feasible hypothesis that can't be tested until Billy's nervous system is fully grown (around 12 years old).

This year, we were convinced by Billy's psychologist (after some odd assertions from his GP, his Neurologist and a geneticist) to attempt to address Billy's sound related anxiety levels with a CBT program called Cool Kids.

So... we have arrived back at the beginning.

We are again, watching our child struggle in a truly inhuman fashion, as we are expected to accept it is a part of his journey.

By inhuman, I mean, lamb to the slaughter style experiences.

I mean, deflecting questions about what might happen, with lies about 'not being sure', for fear of him backing out altogether. I mean walking him into a room knowing that what happens in there is going to distress him beyond anything he could dream up in his worst nightmares. I mean sitting with wide eyes, pasted over with fake smizing, as my child sweats, clenches and eventually breaks down.

I am his mother. It does not feel right to do this.

He is definitely learning strategies to handle anxiety. At the same time, he is being taught that his anxiety has no rational base, and that's where the problem really lies.

On the one side, we have an ENT, with scans and audiometry and research studies detailing a condition called Cochlear Deheisence. On the other we have psychologists, with their collected wisdom about autism and anxiety.

In the middle, we have the most trusting, positive, compliant, willing child I have ever met.

This is not the first time he's been stuck in the middle. The GI says , 'It's autism' and he stands in the middle while we say 'What?'. The neuro says 'Lots of autistic kids have seizures' and we look at him say 'Why?'. The geneticist says, 'There's no reason for his autism' and we sign and say 'Where did you get the idea we were asking you that?'

It's truly like being in a dumb Hollywood movie. I want to yell at the screen... Why in heavens name are we persisting in viewing autism as a behavioral monster that requires taming?

What parallel universe are we living in where we think it is in the interests of children to force them repeatedly and without their permission beyond their boundaries, just so they have a shot at being 'normal'?

How do we think we are helping when we are rarely even listening to what our children are saying?

Behaviour does not come from nowhere. Bodies that shake and twitch and struggle with simple tasks are not simply speculating about engagement. Sweating and itching and seizures and inflammation inside and out, are not choices.

They are signs of biological conditions, in my opinion. Signs we are being actively encouraged to ignore, in favour of conditioning and training our kids into compliance.

In my world, tears mean something. In my world, my child's opinion is worth something. In my world, a diagnosis does not negate either of the previous two statements.

We will continue to do this CBT.

We will do this in the hope that it helps Billy handle the stress caused by his physical condition, not because he needs to learn how to handle his speculative fears. We will stay there with him, and demand adaptation if we believe it is required.

Each and every time I think I should shut the hell up and let Billy be guided by someone else, we have an experience like we had today. While it happens, I wrestle with the idea that I am too soft, too controlling, too over protective.

And then, sense takes over.

The idea that children need to harden up is insane. The idea that autistic children need to harden up is so counter intuitive, I want to scream. If other people think differently, good luck to them.

Billy has one life. To begin that life on a negative foundation seems beyond insanity.

I realise that many people (parents and professionals) think that guiding an autistic child towards something that approximates non-autistic, despite their clear discomfort, is responsible genius of the highest order.

I am, clearly, not one of those people.

Today was hard. It gets harder as Billy gets older, because the thought that his difference might be shrinking minimises exponentially. That doesn't make it harder on Billy, and it doesn't make it harder on us. It makes it harder because the medical professionals who work with him are not even acknowledging the individuality of his journey.

The cookie cutter approach to autism is getting rusty. I wonder who it has 'worked' for in the past, but I can guarantee it has never worked for Billy and it is not working now.

I fear, we are sliding back in time, not just in our story, but in genuine progress in understanding and managing autism.

From service providers promoting archaic views of autism, to academics selecting the research that backs up their chosen field of service provision, to the doctors brandishing the word evidence like it wasn't unwieldy, conditional and compromised by funding.

We are disappearing up our own industry.

So, why do I let this happen? Because I have to at least try. Because I feel pressure to do the 'right thing'. Because there is no alternate service to choose from that isn't dripping in snake oil or completely inappropriate.

It may or may not be useful. It may or may not be damaging. It may or may not be right.

I'm thinking I'll start gambling. The odds of success seem to be about the same.


Lisa said...

Gambling is good. Not the 'everything I have on the nose', but the 'small bet each way' type.

Because nothing works 100%, and each little thing may help a little. Or not. As we all know.

As for CBT, I think it works for what it works for.

If you are anxious about dogs because one dog bit you 20 years ago, sure CBT will fix that.

If you are anxious about dogs because there is a real, and high, probability that every dog you come across will open its mouth and cause you physical pain... CBT won't help. Earmuffs may.

Floortime Lite Mama said...

I am in tears here- sending you and billy so many many hugs
Gorgeous post as always
My personal philosophy has become to put kindness first
and ignore all the stuf that says "its kind to be cruel "
No its not !!
If a scream hurts our ears - we dont spend our time in a shouts filled room just to make us mind less
In fact this is the way secret polices torture people
This is so true

"What parallel universe are we living in where we think it is in the interests of children to force them repeatedly and without their permission beyond their boundaries, just so they have a shot at being 'normal'?