Wednesday, July 11, 2012

A fortuitous flu...

This is week three of Billy's adventures in CBT - cognitive behavioural therapy. It's week two of my world's strangest flu. These two things are happily (and oddly) linked.

I am not a fan of behavioural therapy for Billy. It has never felt right for him. I see its benefits for other kids, for sure, just not for Billy. So, when his psychologist suggested this program, I was dubious.

Anxiety has become a bigger issue in Billy's life over the last year or so. We saw a big spike when we started medicating him for his GI issues, but maybe that was coincidence. We saw a bunch of new anxiety related behaviours when he started having seizures this January, but maybe the doctors are right and that's unrelated too.

He is most obviously anxious about two things - sound (dog barking/coughing/baby crying) and being left alone (and the associated lurking monsters, creeps and ghosts). He began to spin off into a cycle of really negative thoughts, each time these fears are provoked. And that's when we realised we needed some management techniques. Billy's psychologist authored an ASD specific version of the Cool Kids Program, and suggested it might be right for him.

We did an intake interview to do this course as a part of a group (the standard way to run it), but they didn't feel as though they could accommodate Billy's needs. Then, we were offered the chance to do it solo, with one of the younger psychologists in Billy's psych's practice.

Three weeks in, and I could not be more impressed with what is happening.

Billy has learned to identify anxiety, both intellectually and physically. He does body checks to assess how (and where) his anxiety manifests. He has an ever growing toolkit of strategies. It is astonishing to see how he is embracing (and utilizing) what he is learning. In three weeks.

It's really wonderful to see him building a trusting relationship with the lovely psychologist. It's amazing to see how articulate he is about his feelings. It's confronting to sit in the waiting room while your child faces his fears in another room.

It makes me think a lot about the journey we go on as autism parents.

The clearest thing in my mind, right now, is that any discomfort I may feel in any part of this job, is miniscule compared to what Billy feels. I have nothing but admiration for him, especially as he grows and maintains an inspiring-ly positive outlook on the world and his potential in it.

I struggle A LOT to get a practical handle on what the hell I am aiming to do as his mother/carer.

Why do we do all this therapy? How do we handle his obvious challenges? How much do we adapt life to accommodate his unique needs?

What's the desired outcome here?

I have developed a slight issue with therapy of all kinds, and I know it's not helpful. I very firmly believe that all Billy's challenges come from a biological base. It's nonsense, in my mind, to think anything else. It's not like the 'behaviours' we call autism just emerge of their own accord. So there's a part of me that thinks engaging in external therapies in an attempt to regulate these behaviours is simply playing with behavioural play dough.

Also, it feels a little like I'm denying the 'medical-ness' by acknowledging that therapy might help. I know this makes no sense. Reading it back it seems non-sensical, but when a neurologist suggests a psychiatrist might help with a physiological hearing problem, I bristle with indignation. When I grow up, I will embrace the fact that treatment is a many faceted beast. Right now, I want to punch people for the inference that my son might be capable of being 'better' if I just manned up and forced him to be.

I don't believe 'normal' is the aim, that much is clear. He is who he is.
I bristle when I see others disciplining Billy for flapping, humming, stimming (insert autistic/sensory behaviour of choice). It feels like telling a person in a wheelchair to stop spinning those wheels. I get that it might be hard for him to order a cup of coffee if he can't stop squinting at the shiny spoons, but that is a long way off.

I have stopped congratulating us when he does something 'age appropriate' too. It genuinely irks me that the message that I'm giving my kid is that the other kids are right (and so, he is 'wrong'). Again, I'm assuming we can get to the point where he understands that re-enacting a cheetah/gazelle hunt from David Attenborough's Life of Mammals, word and action perfect is not appropriate activity for the workplace. Unless that workplace is the African Savannah, which would be Billy's dream anyway.

I also do not, for a minute, believe that the 'problem' lies in the rest of the world, and their attitudes to difference. That kind of 'us v them' narrative is about the most unhelpful thing I have come across in this journey. The advocacy part of being an autism parents seems like the easiest task we have. Like many things, Billy has learned by a combination of his own strength of character and observation of the people around him, to advocate for himself. He is very open and honest about his needs.

I don't see that Billy has a 'problem'. I see that as a part of his life, he has a disability. I see that his disability is born of medical issues that are being ignored by the medical profession, but that hoary old chestnut is what I always talk about. Back to the therapy question... what's the aim?

The CBT has helped me understand that, for us, the aim is life.

Just life.

Happy, healthy, full of potential, full of opportunity, devoid of as much fear and sadness as possible...

If I could catch a silver bullet and make the autism go away, I would. I won't lie. Billy is an only child, living far away from the majority of his family. The fact that he is facing an adult life without a network of unconditional family support is frightening as hell. The idea of him living in this giant city as a solo act would be scary enough if he was neurotypical, spectacularly wealthy and a Rhodes Scholar. If that same silver bullet could blast away the gut issues, the seizures, the autoimmune illness, I'd be thrilled as well.

I guess, in the meantime, while I wait for the bejewelled weaponry, the therapy is about making Billy's reality as empowered, positive and practical as possible. I'm a little bit embarrassed that I thought it was all about making the autism go away, at the beginning, but I think I get it now.

It's not about telling him he's 'wrong'. It's not about making him 'normal'. It's about making the challenging more possible, if possible.

What has this got to do with the flu?

Billy cannot tolerate coughing from other people. Interestingly, he rarely coughs himself. This flu I have is a cough, just a cough. No runny nose, no sore throat, just the sort of cough you don't want. It's loud, it's rattly and it's been nasty for almost two weeks.

My crusty cough been the ultimate provocation of Billy's emergent anxiety management tools.The noise is intolerable, and in order to protect him from the noise, I have to leave him alone. It's a vicious, phlegm filled lonely circle.

However, using his CBT skills, he has learned to breathe, find his worry scale, point to a number and formulate a helpful thought to get him through the sound. He has a scaffold to get through the moment (and the 'moment' is everything for Billy) and I have some slight relief from the idea that my hacking attempts at lung clearance are killing my relationship with my child for ever.

We have a long way to go. I'm hoping the next seven weeks will be free of sore lungs. I fully expect we will be gifted a weeping baby, a barking dog and a real live creepy ghost to help us learn.

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