Wednesday, February 20, 2008

Looky! I'm Not Caving! I Am Badass!

Bubbles is, right this very minute, screaming at his ECI (Early Childhood Interventionist). I am, right this very moment, remembering the part about how it gets worse before it gets better.
I am also vaguely remembering that I heard the word 'breakthrough' from both teachers working with him last week.
((((ohpleaseohpleaseohplease!!!))))
Last night I watched a recording(which I had requested) of Bubbles and the behavior specialist working with him two weeks ago. It was one of the most painful things I have ever watched. I had to pause the forty minute video at least three times. I knew it was one of his hardest sessions - I think it was the one that prompted the question, "How is he when you leave him with other people?"

Hard doesn't begin to describe watching your child go from deep, breath-catching sobs to checking out, closing his eyes and wobbling to keep his head up as he wills himself to sleep, and the only sounds heard from him are the deep residual sobbing gasps in between long silent breaths. The ABA requests don't stop; the teacher is gentle but she shows no mercy for the sudden nap, she has seen it before. If the checking-out-of-session to sleep is reinforced (simply by allowing it) this time, then it will be that much more difficult to un-do.

I support her, I believe in her, I believe in ABA, I really do.
I repeat this to myself in mantra form.

I can defend this method to anyone who dares to question it. You think I am creating a trained monkey? Well, my monkey will hopefully be able to function in a world of differences and expectations. You wonder why I put him through rote training 6+ times/day and ask him (force him with a 3-step if needed) to touch his head - touch his tummy - shake his foot - clap his hands - say "GO!" in quick and repetitive succession? And I tell you what I tell everyone else I have determined does not really anticipate a qualifying answer from me as much as an opportunity to question my motives, "Because, how else do you expect to get a child to say something? Repeat after me? Say this? Have you ever tried that with a two year old? A two year old who loves to say 'No!' if you even so much as imply that he should perform on the spot?"
(really, my two year old does look at you like you just asked him to perform the encore to Phantom of the Opera if you so much as ask him to use the label 'milk' for such a thing as 'milk'.)
Bubbles is suspicious of requests. He is getting better. Much of the speech therapy he is receiving now is just getting him used to following requests; Hello, ABA.
About one month ago, we tried something with him called Constant Time Delay (CTD), a bit too early. We knew he could say the 'b' sound, so we chose something dear to him to make him work for: Bottle. He didn't need a bottle to receive nourishment, but he loved bottles enough to work for it, we figured. We figured wrong.
After six days of using CTD to get Bubbles to say some (any) approximation of 'bottle', we gave them up. He was more attached to refusing to say anything on demand than he was to getting that damn bottle. I mean, he is two - it is more than time enough that we said goodbye to bottles. But really? A child who would rather tantrum than get the bottle? Who was this child, and more importantly, who the fuck had dropped him off at my house?
Once I refreshed my memory about the genetic stubbornness and pulled myself together, I wept a few more tears for not being the parent I want to be, and bucked the hell up.
I recalled one of the first questions I had asked the director of Bubbles' ABA program, "What he doesn't improve? What if it doesn't work?"
Her answer was the one that sealed the deal. "If he does not make improvements, then we are doing something wrong. It 'not working' is not an option."
How could you keep from kissing the person who said that? (By nodding quietly and resisting that impulse, I found...in case you were wondering.)
At any rate, I took that part on as my own responsibility as well. If it wasn't working, then I had better request some changes. If it wasn't working, then what more could I do at home to help him?
After my six days of tantrums (his) (believe me you'd thank me for the condensed version rather than the play-by-play hours of tantrums which made up each and every one of those six days) and ultimate failure with CTD, I emailed J and waved my white flag. And do you know what she did? She put herself back on his program to work with him one:one. She revised his plan - ditch the CTD for now. She patted my ego and convinced me that I had not failed, but merely tapped into a clearly difficult level of demand from him. She reminded me that we had been understanding and following his nonverbal requests so well and for so long, and now he could not fathom why we can't (or refuse to) understand him, and that his frustration level would likely get much worse before we saw improvement.
Dark days, I tell you.
Easy to defend your methods and choices to those who question you. How dare they? Being a parent is hard! And it simultaneously subjects you to and exempts you from such commentary which is so often received as judgment.
But it is harder, so much harder, to defend your choices to yourself.
To your gut, which is wrenched and knotted from watching your child sob and sob and heave and sob. To your heart, which is ohsopainfully breaking as it witnesses these cries of angst, this inconsolable frustration. To your brain, which is grasping for intellectual justification as you watchyour child, wavering and half-asleep, barely able to focus, but still following instructions to 'tap chair' and 'put ring on stacker' in desperate hope that this person will just leave him alone if he puts the damn ring on again.

This is much harder to defend. To look past this and convince myself that I am helping him.
Do.
Not.
Cave.

This is the stuff that motherhood is made of, I tell you. holyhell.


But, are we making progress? Yes, I would like to think that we are. Bubbles did not spend more than half of his session today screaming. His parroting and babbling have increased by leaps and bounds (this is a huge step towards sound-pairing and articulation), and he will occasionally say a word upon request.
He tosses out the occasional sentence, often said so quickly we don't understand it - but if we could slow down his tape, I think we would find he can say way more things than he gets credit for.
Yesterday, he moved the mouse and it changed the large computer screen in front of him. He reportedly said to Daddy, "Whatdiditdo?"

He even took a chance on a See'n'Say, and allowed it to 'tell him what to do'!


video

Note his very dramatic 'woof woof'.

Word of the day?

Breakthrough.

16 comments:

Anonymous said...

Your child is super cute, and lucky to have you take such care to help him connect. Anonymous good wishes, hang in there.

jenijen said...

:)
xoxo

Tricia said...

When we chose to let our kids "cry it out" it was awful. And i always think of it as the worst thing we have ever had to (chose to) do... and the best thing we did.

I imagine the internal struggle is the same as yours at the moment- although yours is so much more prolonged.

Hang tight. Find the peace.

He's a beautiful boy.

mamadaisy said...

gut wrenching. hang tough, mama. you're doing the right thing.

Aunt Jennie/Dee-Dee said...

YEAH BUBBLES!!!! You did it!

I just cried when I watched the wee video! He did it! He did it! He did it! A "woof woof breakthrough!"

OK...back on working on dee-dee!!! Ha-Ha! Only kidding!

Hang in there momma! You are GREAT!

xoxo

Tracey said...

Be strong, Mama...

Mrs. Who said...

You are SO SMART to be on top of this while he is so young. You wouldn't believe how many children our speech therapist at school works with who are elementary school age and the parents never even thought they had a problem.
Also - the staticky blonde hair? Darling.

nailgirl said...

I pink fluffy hearts love the staticky hair:)
You are doing the right thing even though it sucks ass becuase it must be unbearable to watch. You probably wont remember this in 5 years. Hang tuff babe!

Elizabeth (Table for Five) said...

I'm only asking this because my nephew has it, could this be Oppositional Defiance Disorder? My sister and brother in law just about drove themselves nuts until they got my nephew diagnosed. Just curious.

The video is cute-look at his wild blonde hair! I'm telling you, he and Kaitlyn would make a great couple :)

gwendomama said...

dont think that is our problem.
although, after lookinng into it, my husband may have it.

MaryP said...

Phew. I'll have to trawl your archives, because I've stepped right into the middle of a very dramatic story. And it sounds like it will have a happy ending.

But in the meantime? Hang tight. You're doing brilliantly!

chris said...

I laughed out loud at your husband having ODD; I think mine does too.

That woof woof was fabulous.

Anonymous said...

Have you read Jenny McCarthy's book Louder Than Words? It's interesting and also very pro ABA (as well as biomedical.)

Cindy said...

You are a bad ass. And that's why I tagged you for five things. I know there are more things about you than that, but I thought I'd try to keep is reasonable.

xxoo

DadaMama said...

My mom always told me that "motherhood is not for wimps."

I have often wondered where the hell my oldest child came from. He's such a frustrating mixture of stubborness and boundary-pushing--he's the first two-year-old I ever met who could throw a tantrum that involved turning over every shelf in his room AND THEN hurling toys at the door. While screaming.

Now that he's almost five, things have gotten a little easier, but only marginally. But I really think it's when our children push us the hardest that we are learning the most. I have high hopes for my frustrating kid, I think he's going to turn out to be a stellar human being.

Mamacita Tina said...

My heart goes out to you and your child. These will be tough times (I can't even fathom what you are going through), but you two are seeing them through and improvements will be made. Hang in there. Big hug being sent your way...