Tuesday, January 18, 2011

Yes, we have no bananas...we've got a lover-ley bunch of coconuts....'ave a banana,

We FINALLY have an answer.
Do you know how fecking relieved we feel to have an answer, a label, a name, an actual diagnosis, instead of that vague "maybe hormones, maybe teen angst" blah blah tossed to us like crumbs?
Do you know how abso-fecking-lutely lighter our shoulders feel, knowing we did nothing, nothing at all to cause these problems?
Oh, it doesn't matter that I know I didn't drink or do drugs or live a wild life or anything while pregnant, and his father has often asked if he did something wrong or could or should have done something to make things different.
We are his parents, it is always at the backs of our minds (no matter how many others are diagnosed with Autism) that we must have done something or should have done something different or put our shirts on in a different fashion or had bad Feng Shui in our home or ....whatever.
The answer is.....drum roll, please......
Episodic Dyscontrol Syndrome aka Intermittent Explosive Disorder.
Go on, go gurgle it.

No, I did not do crack cocaine or drink alcohol or swing from chandeliers when pregnant; I had high blood pressure, worked full-time until the placenta previa was discovered (the placenta was covering my cervix, no emergency exit that way), enough fluid retention to call off the drought and was so bored on strict bedrest that I even read the fine print on those dinky Franklin Mint offers.

And at 16 weeks I lost Aspie teen's twin.
Didn't know there were twins until after the fact, lost him/her on THE weekend all freakin' radiologists were out on strike (cos a potential miscarriage is not considered an emergency. huh) so we had to wait til Monday to discover the Aspie fetus was waving his bungee cord about still, that there was an empty sac beside him and there was another egg propped at the end of my fallopian tube waiting to get rubbed up the right way by the Spouse's swimmers.
The GP was very insistent "Please, don't have sex for awhile!"
I've followed his instructions to the letter ever since....

Anywho, the kidlet was born via caesarian, was whipped off to the neo-natal unit, yada, yada, yada, the rest is history.
So, yesterday we were told that whenever a twin dies in utero there is always some form of brain damage to the surviving twin, even if it is unable to be detected by an MRI.
Which is the most likely cause of his frontal lobe not working properly (ADHD, behaviour control, Tourette's, Autism, etc).
And the push off the trampoline 2 years ago may be the straw that broke the camels back with yet another insult to his frontal lobe, triggering the Episodic Dyscontrol.
So, we wait for the appointment for the MRI and further genetic testing (as it's been almost 10 years since our last lot of genetic tests and massive progress has been made since then).
Not that there actually is anything we can do; we can't stop it or change Aspie teen or hang him upside down from the chandelier and whistle Dixie to see if he turns into a frog.
We basically stick to the medication he's on.
And ride out the malestrom whenever it hits.
But now we know!

 *Copied and pasted from my Aspie blog, apologies for double posting to those who follow both*


  1. Far out, Jayne. But yes, at least now you know. Helluva lot of new information for me in that post of yours. Just -- wow.

  2. Mindbolowing stuff but GOOD!!!! At least you do know! Here have a coconut and a hug from the old blog troll here

  3. Hey, congratulations! Weird as that sounds ... its GREAT to have a real name for a real condition after years of being told there's nothing wrong! I know ...

    Thanx also for the disturbing mental image that will, no doubt, stay with me through the evening - of the poor lad swinging from the chandelier while parents whistle Dixie. Gold!

  4. I need to email all this to my mum so she'll know

  5. I understand the feeling guilty part. I understand your relief at having a diagnosis. Hugs from across the sea.

  6. "Knowing is half the battle". Ok so the quote came from GI Joe (popular when my boy was young and I watched what he watched) but I've always found it useful.

    Thought I heard a sigh of relief.

  7. Thanks for sharing that as now people will have some idea what to look out for in the future should they come across similar behaviour. I thought that after one too many ales under your belt you start swinging from the chandelier.

  8. Even though it makes no difference at all, it's still nice to have a diagnosis and a name to put to the condition. At the very least you have an answer for when unfeeling busybodies ask what is wrong with him if they should view a meltdown.
    I did not know that about the twin dying thing, I wouldn't have thought one dying would affect the brain of the other. Maybe with identical twins, but not fraternal.
    I like the mental image I have now of your boy still waving his bungee cord around in there.

  9. Wow Jayne... wow. You have been through a lot - and I have learned a lot during this post.


  10. Good. Good. Very good. Keep on truckin'.