Tuesday, April 12, 2011

Stinking germs...

All through Billy's life, one thing has been consistent.

If we put him in the middle of a group of kids, he gets sick. Like clockwork.

In the world-meet-autism realm where I live, what the mother thinks is generally somewhere between Lindsay Lohan and a right-wing shock jock on the credibility scale. So my statement about Billy's illness is usually met with a smirk and a raised eyebrow. But trust me, I'm not a doctor, it's true.

One of the great benefits of our Distance Ed adventure is that Billy's contact with kids is sporadic instead of constant. We do parks, and the zoo and the shops. We visit people one on one. He gets social experiences that are manageable, and definitely less confronting than the abyss style immersion social learning that school brought. He loses on the growing relationships, for sure. He misses his friends (I love writing that, not because I like making my son sad, but because he actually has a growing conception of sustaining peer relationships). 

Every so often, we go to an indoor play centre, and Billy gets to have a good old fashioned bounce around. It's tough, noise wise, but the sensory benefit of the inflatables somehow allows him to take on the challenge. He LOVES these places now, though he is generally a sweaty shell of a kid when he leaves. I see a lot of sweaty shells of kids pushing their way out the door of the play centre with lollipops hanging out of their mouths in a desperate attempt to replace blood glucose.

Last Friday, we went to a play centre. Billy made a couple of friends, and they all hung out for almost three hours. Occasionally, Billy tried to stalk one of them (at the moment, he is often a predator and his often unsuspecting friends are prey... in the David Attenborough style, as opposed to the Arnold Schwarzenegger ouvre). The kids weren't thrilled with being 'brought down', nor were they keen on being 'throttled', but with a few Mummy interventions (threats of computer-i-cide and You-Tube-ectomy), we got through it.

As I was smugly sipping lattes and chatting to a lovely other mother, I said (out loud, I believe) 'Ten bucks, we'll pay for this in three days time...' No, I wasn't planning on waiting to pay for the coffee... I was thinking Billy would get sick.

Then I put myself through this crazy game. I think, 'No... he won't. It's all in your head. Those people who smirk and give you patronising eyes and tell you this illness issue is all in your head are not smug bastards after all, they are right. Billy will not get sick.'

Then I go through a couple of blissful days where I forget the whole conversation inside my head. Well, in the case of the last few days, not so blissfully, because we are moving house on Friday and the weekend was spent packing boxes full of forgotten crap.

Then, yesterday, Billy becomes the sneezing boy. I think maybe it's a bit pollen-y here in Sydney, until I remember Billy doesn't really have allergies. No, it's not pollen or dust or dog hair, it's boogies. Nasty, stuffy, hot headed boogies. Billy has a cold, on the first day of the school holidays. Nice.

No matter how old, no matter how well fed, no matter how much we work on 'exposure'... this pattern has been consistent right through Billy's life. Him, in a room full of kids for more than twenty minutes or so, equals boogies or chuck or much much worse.

We've had his Ig levels checked, and apart from a slight IgA definiency (more of this in a few weeks when we finally visit the worlds-greatest-GI-doctor, and no, I'm not building him up at all....) On the surface, his immune system is functioning. Despite the fact that he's got a patient summary that looks like one of the Sopranos' charge sheets (one of the less clever ones), we have no answers.

This year, his paediatrician agreed we should investigate properly, as it's impacted severely on his school attendance. So we're finally on the road we would rather have been on four years ago. 

It brings me to another consistency in the lives of autistic children, in Australia, at least. Or maybe it's just Billy... you decide. We've had more than our fair share of hospital admissions, many many ER visits, way too many trips to the GP. In Billy's life, we have never once not passed the Medicare Safety Net (a neat little government level that reduces the cost of medical intervention once you've spent a certain amount per year). We go to the doctors a lot. 

When we go to the doctors, ER, hospital, they generally do their job well and bring Billy back to health and then send us on our way. They exchange paperwork with each other, but they don't speak to each other. So no-one ever says, 'Hey, this kid is sick a lot, what's going on?'

No-one except us.

Who drives the medical investigation of autism? Who orders the tests? Who drives the exploration? The GP? The Paediatrician? The ER doctors? The specialists? No-one os throwing their hands up in the air. We have a few solid DAN/biomed doctors here, but you need to mortgage your house to maintain the process, and their approach is decidedly cookie cutter.

It doesn't seem right, that I - a mother not trained in medicine, is the one who is supposed to tell the doctors what to do. And, for what it's worth, the doctors aren't thrilled about someone who writes jolly songs for little kids making medical suggestions. So who is stuck in the middle of all of this?

Billy. Sick again, after being in a room with a bunch of kids for too long. Sick again, for no good reason. Sick again, when we are about to move house.


I hope the removalists do not notice the boogies on the boxes.


Lizbeth said...

I can only speak for myself but yes, my son is sicker that his siblings or classmates....he gets EVERYTHING. And I'm sad to say for us--I am the one in charge of his health. He see's so many people, at the end of the day none of them talk, they have different charts and they only see a part of the whole. Sigh.

But on a lighter note, I do hope your move goes well!

Lisa said...

I'm there too. Don't know whether to blame the Hep B vaccination last Wednesday, or the change-of-season temperature drop, or...
Thursday morning he was writhing on his bed as the eczema grew redder by the minute. No school. Then the sinuses started playing up.

He's been walking around like a bruised-eyed zombie ever since. Not *really* sick, but not getting better. Thought about a doctor visit, but... same old same old "He has a virus. Go away."

On the 7th day, he's finally gone back to school.

*I* know his immmune system is weird. I just don't know *why*.
Meanwhile, his autistic brother is never, never sick.