The Intruder
December 4, 2010 at 2:07 PM This is not the post I wanted to write.
He sleeps.
He's beautiful when he sleeps. So peaceful, his body quiet, relaxed. His mind, seemingly calm.
He can be beautiful when he's awake, too. But heartbreakingly, we are seeing less and less of that now.
There is an intruder in my house.
I can't tell you what it is. But I can tell you its intent is sinister. Its actions are dark, insidious, terrifying and uninvited. And it's after Josh.
This intruder has been here before. When Josh was little, it tried to take him then. It spent endless hours tormenting my tiny Toad to the point where he was hurting himself in to a bloody mess on a daily basis. Out of desperation, we tried a medication that had no basis in scientific evidence for its use in Autistic children but had volumes of anecdotal evidence to suggest it might help. And help it did. Celexa sent the intruder away.
A few summers ago, the intruder tried to come back again. This time, forcing Toadie to lash-out at others instead of himself. We started him on Lamictal, and once again, sent the intruder away.
A few months ago, the intruder returned yet again. This time it seems, with no intention of leaving. It is heavily armed, it is dangerous, it is dark and terrible, and has fortified its defences to the point of invincibility. And it is taking Josh. It's taking him somewhere frightening and violent and as hard as I try I can't save him.
Out of nowhere, Josh will go from my sweet, forehead-kissing toad, to an animal - an angry, aggressive, wild, cornered animal that for all intents and purposes, seems to be fighting for his life, even though nothing is threatening him. As small as he is, even at twice his weight, I can't hold him. And I have to, otherwise I will be seriously injured - he comes after you, relentlessly attacking. He pinches, thrashes, kicks, and I suspect it's only because I've been careful that I haven't been bitten as well. And you can't get away. It's a frenzy of aggression that is fast, strong, constant, and un-breakable. I can try to talk to him calmly, I can try to get him to look at me - but the intruder is all I see behind his eyes when this happens and there's nothing I can do. It's like my Toad is gone, there is only this ... thing... inside him and you can't get to Josh until it's decided to let him go.
I can't even begin to explain what it's like being hurt by your own child. I know this is not the same as if Zach hauled off and hit me, I know that. But Josh is still my baby, my Toadie, and I have bruises all over from his pinching, took a couple of hard shots to the shins yesterday when he started kicking, and am lucky my jaw isn't broken from the elbows I took there. I have to imagine that whatever is causing this can't be nice for him either. But I don't know what to do. His Dr is at a point where it's just a guessing game now and whatever we try is just a shot in the dark since anything that has some science behind it has failed for various reasons.
The Abilify did nothing. The Risperdal was showing some promise but then the hives started. He's still breaking out, many many weeks later, but, they were very definitely worse when he was on it. We tried Seroquel after that - and these are some hard core anti-psychotics we're talking about now - and it only made things worse, if you can even imagine that. So now what? We're going to see if taking him off the Celexa makes a difference, maybe his serotonin levels are way off the charts.... but, maybe he just needs more, since he's on a lower dose and there is a problem with accommodation over time. It's all just a crap-shoot right now.
Something needs to work soon.
We can't go anywhere with him any more. Literally, no where. Even places he wants to go.
Josh has been seriously affected by whatever it is that Autism does to him for many, many, years. Up until now, I've never been angry. I've never felt the need to be. My focus has always been to just do what needed to be done for him, keep him as happy as he could be, and not waste my energy being angry. But now I'm pissed. Because now I can't even do those things for him.
The intruder is taking him and I will fight it to my last breath.
Whatever this is has chosen the wrong child. Because no matter how hard it is, how painful, how sad, or how frightening, Josh is my baby. So watch out, you goddamned intruder monster because I will take you and rip you apart with my bare hands if I have to.
Just LEAVE MY SON ALONE, you impossible son-of-a-bitch.
Reader Comments (11)
Oh Sarah, I wish I knew what to suggest. I wish there was something I could say to help and give you hope. It breaks my heart that your sweet Toadie is hurting...and most of all that he is hurting you and those he loves.
I do not have an autistic child. I cannot even begin to imagine what you are going through. But I do know the angry determination that a mother has to protect her child from every bastard monster that even threatens a scratch upon your most prized treasure. I don't know you, but I will pray for you and for Josh (who shares a name with my oldest son). I will pray for strength of heart and peace of mind. I will pray that when you are the most exhausted that you never feel it. And that you always remember that you have an army of supporters behind you who are willing you to win this battle against this "impossible son-of-a-bitch."
Sarah, how hard, how simply awful. I will hope and pray for a sudden swift and permanent defeat of this horrible monster, and that you get your darling son back. Poor Josh. Peace and strength to you.
We just had to put our Joey on Lexapro. It is just now hitting us that he may be on it for a long time. We can even pinpoint when the anxiety took over and why, but fixing the damage done? We're stumped. Sending you good thoughts and vibes.
I wish I had some advice to share, but I don't--I will try to send a more experienced friend your way.
Thank you everyone, for all the thoughts and support. This is really the most difficult it's ever been. Back when he was little, even though the tantrums were terrible, I could still see him. When he's in the grips of whatever is making this happen now, I can't see him anymore.... I can look in his eyes and it's not Josh. That's the the hardest part, I KNOW it's something wrong, I just can't fix it...
This is happening to our boy too. Out of the blue, on a dime, he'll turn into this beserker ... he's getting bigger, my wife is already becoming afraid of him, he's so sweet most of the time but when "it" happens -- we have no answers either. I wish I had some for you. Wish someone had some for us too...
Oooh this is absolutely heartbreaking. My heart goes out to you and your family and I really hope you will find the strength needed to continue fighting and not giving up! Medicine is always advancing and finding out new things and I hope with all my heart that the next big discovery will be how to fix this problem.
I can't say anything that hasn't already been said. But I want you to know you're in my thoughts and prayers and hopefully you will find something that will suffocate this intruder for good and give you your happy son back. *Hugs*
Thank you Tom, Anne Katherine and Juju - it's just hard. He was really in such a good place just last May, better than he's ever been, then a month later, we started in with this stuff. And I just don't know why or what to do to help him. We'll keep working on it. School has had a behavior specialist from the University of Washington come to observe him so we'll see if she has anything to offer strategy-wise.
I echo everyone's sentiments here. We've gone through this with our son too. This time last year was an absolute nightmare for all of us. We're in a better place now, but I wonder for how long. At the same time I worry about the effects of being on these drugs for...who knows? Forever? It's scary. I know you don't know me, but {{{hugs}}}.... it's what I do when I don't know what to do. Good luck to you and your precious Joshua.