Recently we went back to our paediatrician. I can never decide whether I like going to the paediatrician.
On one level, having pointed (and sadly relevant questions) asked about my child is a sobering experience. On the other, it’s strangely reassuring, affirmation that the challenges he faces are recognised by people who know what they are looking for. As much as I hate seeing the old doctor’s eyebrows furrow as he says, ‘Oh that’s a shame, I didn’t think he’d end up quite like this’, I do appreciate his 50 odd years of experience in the autism field validating our ever-changing concerns.
Why were we back at the paediatrician (after a long period of thinking perhaps the doctors were not the ones who could help us the most)?
We were there because we’ve had the truly odd experience over the last little while, of having our understandings of Billy’s disability (ability, challenge, diagnosis - whatever you want to call it) questioned by people in his life who should know better. People whose job it is to know better.
After seven years of investigation, assessments, operations, therapy sessions, questionnaires, appointments, invasive procedures, illnesses, research, supplements, medications, applications and a whole lot of hard stuff too… it has been refreshing to be presented (by folk without medical degrees) with the knowledge that our son is nowhere near as autistic or ill as we think he is.
At our recent appointment, the paediatrician used his doctor-ly tools to whip the medical side of the team back into action. Yes, we need the GI doctor to investigate. Yes, we need the metabolic team back on the case. Yes, we need to bring the immunologist to join us at the Billy table.
I feel sick typing these things. What parent wants to hear that?
I also feel sick that he said, ‘Why hasn’t this child had an EEG yet?’ The short answer… ‘Um, I’m not sure.’
The long story is that Billy’s been scheduled for two EEGs in his life. In both cases, the neurologists were really reluctant. They both said, ‘It’s autism, Mum, what more do you want to know?’ rendering me both enraged and feeling partially insane.
I don’t know, doctor? Maybe I want to know why? Maybe I want to know how?
Maybe I want an understanding of why my son ends up at the doctors more times in a year than all the other kids I know combined. Maybe I want to know what the ‘terminal hyper-intensity’ on his MRI means? Maybe I want to know why my child twitches, and jerks and grimaces uncontrollably sometimes. Maybe I want you to step up and hit the freaking ball I paid $500 to throw at you.
But, surprisingly, I didn’t say any of those things. I just swallowed the bile in my throat, mentioned quietly that I didn’t recall giving birth to the doctor who just called me ‘Mum’ and walked out clutching a referral.
On both occasions, Billy was sick on the day he was supposed to do the sleep-deprived EEGs, and on both occasions, his GP called in cancellations.
I left the paediatrician this time with an odd set of feelings, a lot of pieces of paper and a much lighter wallet.
As Billy and I made our customary trip to the toy shop near the doctor’s office to look for trains, I was reminded of something bigger than the perceptions and excuses and revenge fantasies that have filled my mind lately.
Billy was looking for a particular Percy train. He was struggling in the sea of trains, and he picked a Thomas off the shelf. I said, ‘Are you going to buy a new Thomas instead, Bud?’ ‘No’, said Billy, ‘Thomas is helping me find Percy. They are best friends. They always know how to find each other.’
Yet again, the kid teaches me something I should have worked out for myself.
We are not in this alone.
We may not always see eye to eye with everyone our child comes in contact with. We may not always agree. But we have friends who know how to find us when we’re lost.
I’d like to thank all those friends – fellow parents, pre-autism buddies, post-autism colleagues – all of them, who have helped us maintain equilibrium (shaky and dynamic as it is). Thanks to those who have stuck their neck out, way more than normal life expects. Thanks to those who have politely held a reality mirror up for us. Thanks to those who have offered listening ears and tea and sympathy. Thanks, especially, to those who have had the courage to disagree and still stick around.
See, if Thomas the Tank Engine was a doctor, I’m thinking we’d spend less time with our heads exploding and more time chuffing happily along on this rollercoaster ride.
Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.