Doctors... why do so many of you suck so bad?

Dear Doctor Who-Ever-You-Are,

I've gotta tell you something.

And I want you to listen, even though, it's all about the fact that you don't seem to want to listen.

Let me start by saying, I know I appear a little crazy. A little unwound around the edges. I've always been a bit like that, and now that I have this kid who has a bunch of challenges... I don't get around to winding up the edges as much as I used to.

But the words that come out of my mouth are true. I'm not making things up. I'm not inventing problems. I am genuinely concerned. I may be a little on the over-concerned side, but work with me.

I don't know a lot about autism. I guess I will never know enough about autism. But I've learned some stuff over the last six years. About autism, and about Billy.

1. He registers pain differently to the way I do (and maybe even to the way you do)

For a long time, he felt no pain at all. We thought he was 'tough' and even 'brave' when he fell over, bruised or cut himself and just got up and kept on moving. No... that was him under-registering pain. After lots of therapy, he now feels pain, but we can't be sure how much or how little. It's hard to quantify, when you've got nothing to compare it to, and when comparison is not one of the skills you were hardwired with.

So, statements like 'he doesn't look like he's in pain' don't really have much substantial, medical meaning.

2. I do not want your job, and have no interest in making you feel threatened.

But I will advocate for my child, and that may include pointing out some things that may not have occurred to you yet (see, I'm being charitable...). If it's OK for you to acknowledge that you are struggling to choose the right words to get Billy to do things - 'Can you point your foot, Billy?' 'Yes!' says Billy as he proudly points to his foot - then why is it not OK to acknowledge that someone who lives with a condition every day might have some information you may not have thought about... in relation to that condition. Especially when it has a direct influence on WHY WE ARE HERE!!!!!

How can you diagnose someone, when you are closing your eyes to the fact that the information you are seeking will have to come to you in a different way than usual.

3. It's not rocket science - be nice, and people will be nice back to you

I'm not sure anyone, even someone who is genuinely paranoid, appreciates being called paranoid. You, and all the doctors before you, who choose to ignore my son's needs because you do not think I have enough related degrees to have a genuine conversation with you, can bite me.

Seriously, bite me.

You can keep your stinking vaccines and your antibiotics and your insistence that we should toe the line for the 'greater good'. You can keep your opinions about the level of responsibility we exercise in parenting our child. You can keep your toxic, germ filled, dollar driven workplace to yourself.

It's like being trapped in an ugly, co-dependent relationship.

Thanks for nothing,

Me

I've been trying to avoid writing this one...

In my head, I want this blog to be all happy, positive stories.

But this past Christmas has got me thinking about the last remaining dark thoughts relating to Billy's diagnosis.

We're pretty good to go in terms of the future. We're happy that he is who he is, and we're prepared to fight hard to make sure he's allowed to be himself. But the past really gets up my nose sometimes.

In short, I reckon we are owed a few apologies. More specifically, I am due a few apologies.

All the people, some close to me and some not, who told me I was wrong when I tried to tell them something was going on. You owe me a big fat sorry.

The Early Childhood Nurse who was supposed to pick up 'issues' in babies and mothers... you were wrong. I was right. Ordinarily, in normal life, being wrong and hurting someone over it, requires an apology.

The four paediatricians - one after the other who suggested I try anti-depressants, long day care, playgroups, actively un-attaching from my child... you were wrong. And I was right.

Some of my family members, on both sides, who chose to believe I was a hysterical worrier. You were wrong.

The family members who still believe I am a crazy woman. You are completely wrong.

There's something quite profound going on with our child, and it's been there since he was a baby... remember? When I asked you for help...

You should really say sorry. And if you can't find it in your hearts to say sorry to me, then do me a favour.

Be really, really nice to other parents and children that might be struggling with understanding a potentially serious condition in their child. Switch off your judgement, it has no beneficial function. Offer your help instead - what have you got to lose? Look beyond behaviour and see the people inside.

They are little kids, and parents. And more likely than not, they are trying their best.

More than that, they may be in the process of trying to accept their worst nightmare - that there might be something wrong with their child. It's an emotional journey that none of us want to take, but so many of us have to take. I still don't understand why people didn't feel the need to give us a shoulder to cry on... maybe I'm surrounded by pretty hard folk. Or maybe people just find it too hard to care.

This is the only thing that can make me cry now... we deserved better.

We still deserve better.

Doctors have a lot to learn

Billy just got out of hospital. Just another 24 hour stretch to rehydrate him after a non-specific bug knocked him flat.

He's a serious trouper.

I'd just like to send out a big thank you to the nurses who almost always 'get it.' And if they don't, they are willing to learn. You can tell them a bit about Billy's specific brand of autism, without them looking at you like you are threatening their professional credibility. If you ask them not to yell, or get in his face, or lie... they'll do it.

But the doctors... they have the most to learn, and the least willingness to do it. They flat out suck.

Could be Sydney. Could be Australia. I hope to hell it is... because if autistic people are spoken to the way Billy is all over the world... well, that's a lot of bad doctor karma.

Here's a few tips.

1. Don't yell.
2. When you ask a question, especially an important one, think about the wording BEFORE you open your mouth.
3. Don't rephrase the question immediately after you ask it. That's a second question.
4. Don't lie. If you are planning to stick in a needle or a throat swab, say so.
5. Listen to the parents of an autistic child. Actually listen to any parent. You tools.

Sorry. Had to get that off my chest.

:)