Friday, February 17, 2012

Tiny kitten wearing a bow tie...

I've got nothing good to say. So I've given this post a cute title in lieu of nothing.

This last week began with Dr Poo 2 who magnanimously informed us that Billy has no reflux and that his bowel issues are 'all in his head'. There's no evidence of GI disease, no reason why an 8 year old would be unable to control his bowels, no way to find out any more.

He felt Billy's tummy. He looked at Dr Poo 1's endoscopy results.

He said keep going as we have been. Take the osmotic laxatives. Stop thinking he has reflux. Nothing to see here. There are lots of kids who can't hold poo in, or let it out on a regular basis. Chill out, Mum. He'll get it when he's ready.

OK.

Then we booked an EEG to investigate Billy's seizures, or whatever they are. He has thankfully not had any big shaking seizures since that first one. He has had at least one absence event every day since we started on this game. Some days, they come in waves, like they are chasing him. Some days, you can see them coming. Some days you can't. Some times he twitches, some times he is dead still. Some times he has a bunch of repetitive hand actions, sometimes he doesn't. There's a set of physical behaviours that are common to all these events - a loss of coordination, an increase in sweating, a set of odd swallow mouth movements. They interrupt his play, they interrupt his learning, they break our hearts.

We've videoed as many as we can, but seriously, it's hideous watching your child disappear into some alternate universe, so sometimes we can't make ourselves document what's doing on. We just write down the details and move on.

Billy calls these events 'the funny feeling', and he can tell us when they are coming now. It helps, because having lived with a deeply sensory autistic boy for so long, it's sometimes hard to know whether he's taking some processing time or having a seizure.

I'm reluctant to call them seizures, really, because he hasn't seen a neurologist yet. It's like a spooky stranger has come to live with us. Like Billy has a creepy imaginary friend.

I'm thinking this will all become less odd, very quickly, and I'll stop using offensive words like 'creepy' in reference to my child. Either that or they will disappear altogether. I'm hoping we find out more from the EEG, but a big part of me wants the EEG to find nothing. Actually, I want this crap to stop happening to my boy.

If that's OK.

I'm sick of being grateful that Billy can talk. I'm over being happy that he's reading and hating maths as much as at least half his NT peers. I'm not getting any solace from the idea that 'lots of kids' have poo issues, or sensory problems or seizures. I'm not comforted by the idea that he has been 'struck by lightning'... just bad luck, when it comes to the transverse myelitis or the drug reactions.

I want to get a t-shirt made for me or him or anyone who will wear it that says, 'this is one child, not a representative sample.' Maybe with 'you idiots' on the back.

I'm figuring they wouldn't see the offensive bit until we are walking out the door. I'm used to keeping my back to the wall in those places.

But... I've been writing this whiny crap for the way too long.

He's fine. We're fine. The dog had a bit of a limp early in the week, but he seems fine too.

There are autistic kids everywhere struggling with the day to day. There are parents fighting the good fight with varying degrees of success everyday. There are lightning bolts whizzing about whacking families on the back of the head all the time.

That's all I've got. We're all deep in it. We're all doing the best we can.

Well, that and a very cute tiny kitten wearing a bow tie.


There you go.

That's as close to rock bottom as I want to go.

1 comment:

Dana Meijler said...

Val,

I've been reading your posts of what is happening with Billy and although I have nothing to help or contribute, my heart just breaks for you. I hope you will figure this out soon. My daughter thankfully does not seem to have physical issues coupled with her autism, other than excema and sensory issues so I cannot imagine what you are dealing with. But what I will say is how you manage to cope with it all, write so eloquently about it speaks volumes to what kind of mother you are. Doctors may think Billy is some sort of representative sample but he is not and you are not.

I will say though that it is a testament to the beautiful spirit of your son that although this must be terrible for him it does not seem to have broken his beautiful spirit. Hold onto that.

Sending you and Billy a big hug.