Sunday, April 27, 2008

Tonight, I just want to quit.
I want to call up the autism boss and say, I Have Had It. We are done with this whole mess.
Really, I want to FIRE autism. Autism? You hear me? You are out of here.

The thing is, I don't think we're even getting autism right. I have bought a trillion books and joined fifty dozen web sites and our ism is the sore thumb. Don't read this that I'm saying there is no ism here; surely, beyond any doubt, things here ain't as they should be. BUT. I am so confused and tired and SO TIRED OF BEING TIRED and confused that it stymies me.

As soon as I got a little used to the improvement (it took getting used to because it meant that the painful diet and other measures were working and needed to become a way of life) and the good news from school, now of course it's all negative.

I can't even call it regression, really. We don't do anything as clear and obvious as that. The rooster's language continues to be more clear and focused. He rarely says much that resembles a script, he's using less jargon, and he isn't perseverating around me at all. His sentence structures are more complex and he can use more abstractions. He initiates friendly conversations with people he knows and strangers.

The one thing I have to say that is clearly wrong with the rooster is this: He cannot regulate his behavior. His behavior is utterly noncompliant. He is only happy and getting along with others when the agenda is wholly under his control.

And I want to fire whatever it is that causes that. I want to evict it. I want to give it a piece of my pissed off mind.

The rooster has a great heart. You just have to get beyond a mile of bullshit to see it.

The rooster gets upset if I am hurt. He hugs me tightly and kisses me sweetly and tells me how much he loves me. He makes sure his sister always gets a turn at anything good, unless it means he has to wait or give anything up himself. He says thank you and please almost all the time. He delights in showing me cool things. He beams with pride when he does something well, like dressing himself today. The rooster loves to say hello to people and ask them to play. These are good things in my little boy, almost four.

But. Holy cow. Holy cow, holy cow. A weekend is a tough sentence. I mean to tell you. NON COMPLIANT. He is the King of NONCOMPLIANT. The poster child. We could make a video. We could knock the Super Nanny on her butt. Our days are wall to wall struggle.

And I have no idea how to tackle it. I STILL have no idea which approach or method or treatment or therapist or book or what will help, or how to decide, or where to begin. We will get a classroom shadow in the next few weeks, and that might help, I have no idea. Reading about it until my eyes fall out has enlightened me exactly NONE. We only can tell you what doesn't work, and the list is long, filled with things everyone else seems to find effective but us. The rooster is one of a kind and has an iron will, a bad attitude, and too much power. He is seething mad but does not know why, and he's ready to fight more than 99 percent of the time.

I freak out over how much time has passed without any interventions, but then when I realize the strides he has made on his own that makes me pause, too. If he'd had help over this time, isn't it just possible that he would have made exactly the same progress, all of which we would erroneously chalk up to the ists? It's just a question with no answer that runs often through my mind; of course I know we still plan to get him all the ists we can get him. We're on every waiting list and have calls out all around town.

This is an endless job among endless jobs, lost in a maze, buried in a conundrum, dark and murky, and there are times I just don't want to work this hard. Doesn't sound like me -- I LOVE to work hard -- but I'm about to fall over.

And yes, we even got a baby sitter this weekend, so all of you who tell me to take a break can be assured I try to, but I need more than a break, and even at getting a break I'm doing the best I can. Or at least I'm doing the most I can. I don't know if that's the same or not.

Rambling isn't pretty, but neither am I.

Thank you for reading my drivel. I would say you might not see me for a while, because I want so badly to turn my back on autism entirely, but you'd know that would last 10 seconds. Rooster Calls is about all I have by way of community in my life. The beautiful people who read it, lurkers or not, are the sustenance that forms my life support.

I'll be here. I'll be working. I'll be venting. It's all I can do, until I can't do any more.


redheadmomma said...

-I wish my ramblings were as eloquent.

-you could have been writing about noah here. He hit a HUGE noncompliant stage at the age of 5.

-you talk about so much wonderful, amazing stuff. If you need a pick-me-up, just print that stuff up and put it by your computer. Read it often. Let it fill you up when you're on empty. There are SO many wonderful thigns that the rooster does, many of which Noah doesn't do. So feel good in that!!! :)

- what's the sitch down there for a behavior consultant? Ours is making us very happy because she sees very clearly that Noah's noncompliant behavior is ALWAYS trying to tell us something. And what I sorely need is someone in our lives that is on OUR side that can brainstorm with us about how to go about making life better. So if you don't have anyone like that in your life (yet), What specialist or expert can you talk to that works with the Rooster? You could take a few minutes to send out the signals and say, "you know what? For the sanity of our family, we need to move noncompliance to the front burner and put the other stuff on hold right now." Just to get some assistance on why the rooster does what he does.

Noncompliance is a bitch. And from your older posts, it would wear me down just as quickly. You are SO not alone here. But I think the sooner you guys get help on that, the better. Good good luck & keep us posted. WE UNDERSTAND and most certainly do not judge.

Joeymom said...

I have a friend with an ODD child, I'll ask about some of the things they have tried. I don't think they've gotten a working strategy for their child yet, but I know she'd been researching and trying some, and maybe she can get us started on helping out. There are so many strategies because kids are all different.

Niksmom said...

I hear you loud and clear! And definitely take a look at all the positive and wonderful things Rooster is and does. Let that buoy you when you feel like you are drowning in the rest of it.

We made a conscious decision this year to focus on the things we felt Nik needed the most, NOT what others told us he needed. And you know what? It's not perfect but overall, our lives are calmer right now than they have been in a long while.

Red (redheadmomma) is right...the behavior is a communication. I know that when I can step back and see Nik's behaviors as communications I am better able to find my way back to peaceful with him. It's not perfect and not always easy but it's getting better.

jen:) said...

I'm with you...can I be the first to sign up for the "just say no!" bandwagon....

I too had a break this weekend...we managed to get out for a date & I went out with friends on Saturday - my husband trying desperately to give me some space & time to get my sanity seems to be peeling away slowly and he of course senses it...

We had a marvelous fall iwth our now 6 year old....(and when I say marvelous I mean in the way marvelous looks to someone who is accustomed to the very opposite)....mostly uneventful - and for a few short (very short) moments our family may have even attempted verging on "normal" - in reality it probably never did - but maybe, just maybe if I had known what was to come (and I should truly know better by now) I would have savored more and complained less?....

It's a cycle at our house...just about the time we think we've overcome a hurdle & things have slowed down a bit - "it" rears it's head again - that thing, that ugliness, that distance that somehow wraps itself around my red-headed little man....and takes hold.

We haven't had many glimpses of that sweet boy as of late...."it' has been far more prevelent...

I'm grateful for the few hours each morning where he is at kindergarten & I can enjoy my 4 & 2 year old.....bracing myself for the "news" from school that inevitably arrives the minute he walks through the door...

so when I came down to read your blog today I was overwhelmed with my own desire to surrender to be done with it all...and of course, I cried - with empathy & a bit of relief that someone else has the courage to say what runs through my head on what I deem to be far too many occassions...

knowing full well that as much as I want to say, rather, SCREAM .. NO!...I'll keep going - somedays with more oomph than others....but I'll keep going ...I'll fight for those glimpses of my kind hearted sweet little boy....because amidst the whispers I know I am probably the only one who will.....

thank you for ramblings....ramble on :)