Wednesday, December 22, 2010
Gentlemen...Start Your Screaming
I've mentioned before that lately Bennett has had some rather peculiar behaviors. Well, he's had LOTS of peculiar behaviors for a long time now, but these particular ones have really started to shake me up.
What's rather ironic is that at the core of this is a behavior that is very natural and very normal. Yes, I said NORMAL. I have no issue with the word NORMAL. Being forced to say typical just rubs me the wrong way. Just like being forced to say 'Differently Abled' instead of 'Disabled'.
Look, I can get behind not saying 'Retarded'. I get it. Frankly, the word rubs me the wrong way too sometimes, particularly because I know one day some stuck up, thumb-up-his ass kid who needs to be knocked down several pegs will call my son that and many things far worse. I understand the whole 'R-Word' movement. But 'Differently-Abled'?
There...you lose me.
But back to Bennett. The normal behavior he exhibits is Separation Anxiety. The boy misses his Mommy when she leaves him. Who wouldn't? Hell, I miss her when she leaves me, but I can usually control myself.
The boy loses it. Big time.
And when I say he loses it, I mean he loses it. He screams, he cries, he runs around in a complete panic. He bites himself all over his arms. To the point where he leaves horrible bruises on them. He throws things. At me usually. He pulls his pants off. Rips his diaper off. Tries to knock stuff over. And to me, the worst part, he slams his head into the walls and into the floor. Repeatedly and very, very hard.
My job is to try to stop him, to protect him, WITHOUT REINFORCING HIM.
See, that's the trick, I learned in ABA Therapy 101, a little seminar I took for Parents held by Bennett's school. I can't really react to what Bennett is doing, because that only gives Bennett reinforcement. But I have to be able to be there and try to re-direct him and protect him at the same time while NOT showing like I care or am interested in what he is doing.
I'd be lying if I told you I fully understand:
A) How to do this effectively.
B) That I am even DOING it effectively.
C) That there is even a way to DO it effectively.
D) That it matters at all in the long run.
I do not know how long this will last in him. I do know that things have changed between Bennett and me of late. I am not sure why, though I am guessing that this whole Separation Anxiety is part of it, because it seems like his pulling away from me has coincided with the SA.
Bennett, quite frankly, wants little or nothing to do with me anymore.
I try to engage with him, what they call 'pairing' in ABA Therapy vernacular, but it usually doesn't work, because when I get down to play with him in his environment, he generally runs away and goes somewhere else. There are a few moments, but they are VERY few, where he will interact with me. But for the most part, he steers clear of me.
He used to be into feeling the texture of my head when it was on say, day 3-4 of not shaving...so I thought OK, I'll even try letting my hair grow again, for real, so I didn't shave it for a couple weeks, got him to touch it and for a little while he was actually semi-interested in what was going on up there, but that interest faded fairly quickly.
My hair growing simply was not as exciting as pulling Jennifer's hair or spinning the lids of our pots and pans or some of the very few toys he will engage in now.
For the next two and a half weeks, Bennett's school is closed for the holidays. On Monday and Tuesday Jennifer worked from home (she has a home office as well as an office she commutes to, near Bennett's school). But today she could no longer stay here, she had to go in.
The morning went as I expected it to. Bennett went crazy, and I tried to protect him (NOT) and stop him (NOT) and show him things were going to be OK (NOT) and calm him down (NOT) until he calmed down. Around 15 minutes later, he did calm down, but he still would not really come that close to me. Like that wolf in Dances with Wolves, it took a while for me to get him to come over and take some bites of applesauce in order to get him his morning medication.
Maybe I should just change his name now to 'Two-Socks'?
We sat there on the floor, I on my knees with a cup of applesauce in one hand and a spoon in the other, he laying on the floor fiddling with the lid of a coffee can. He was looking at the ceiling. I was talking to him, or trying to, I don't know of course if he understands me, but I try to talk to him as if he does.
I tell him that I love him and that I'm here for him if he needs anything, and that Daddy will always be here if he needs me. I asked him if he wanted a hug or anything, even though I knew I wasn't going to get a response. I am not sure why I did that. Made no sense to me at the time.
Because then I just burst into tears. Not the small kind either, the big, powerful, body shaking, headache-for-the-rest-of-the-day type of sobbing. I had not been alone in a while, and it just came pouring out. (Funny that...I just wrote that without thinking. 'I had not been alone in a while.' I was not alone. Bennett was right there, and yet I FELT ALONE. That right there describes how distant the chasm is between us.)
If I had done that in front of Carter when he was 3 years old, Carter would have immediately reacted. He would have come over to me, said 'Daddy, what's wrong, are you OK?' and tried to console me. I know this because Carter caught me crying when I got the news that my father had died and he was like 3 1/2 or something and it really shook him up.
Bennett did nothing. He just played with his coffee can lid and sucked his thumb.
When it was over, I wiped off my face and laughed at how fucked up our life is. How surreal this moment on the living room floor was. How, if someone had described it to me years before as my future would I have really believed them? It was just so out there in its oddness.
I just smiled at Bennett, and asked him if he wanted more applesauce. He said 'Eat', as he usually does when it comes to food, and I gave him a few more bites. Eventually, the Home Health Aide (who we lose to Nursing School in 2 weeks) showed up (she is doing day shifts during this time off from school THANK GOD) and he went off to play with her (he enjoys her company much more than mine) and I started trying to get some work done.
I can hear him in the other room.
It is nice. I am thrilled that he is a happy boy. I am thrilled that he is alive, that he is loved, and that he is progressing, even though it is at a pace that would make a snail jealous.
But I do often wonder if it will ever be my turn again to be his Father. Probably. Maybe. But I can't really know that. Many of you would say, with good intention, that I should be hopeful, that of course he will come around, that this is just a phase and that things will improve and he will eventually move past this and start having a relationship with me again.
And you'd be human to want to do so.
You'd also be talking directly out of your smelly asshole...because you have no idea at all what he will or won't do.
None of us do.
See, we can always talk about the fact that Bennett got a diagnosis of PDD-NOS/Autism, that Bennett has this disability or is in this therapy or that therapy, but the main thrust of any conversation has to be that Bennett had a Brain Tumor and as a result he had a temporal lobectomy to remove the tumor and at the time of the surgery the working theory was that the remaining 'good tissue' in his brain had to be given time to 'kick-in' and take over the deficiencies left behind by the tissue that was removed.
What you have to account for though, and what most fail to, is the fact that this Brain Tumor interacted (and badly) with the Pertussis in the DTaP 15-Month Vaccination given to Bennett on February 11th, 2009 (which of course we did not even know about at the time). So from February 12, 2009 through August 28, 2009, the end result becomes Bennett having hundreds of seizures (Infantile Spasms) per day, and the nearly always-present Hypsarrhythmia (abnormal interictal high amplitude waves and a background of irregular spikes seen on an EEG).
So the question to me will always remain thus:
Just how 'good' is that remaining 'good tissue' in his brain anyway, and does it have the capability to DO the things the surgeons wanted or hoped it would? Is it even CAPABLE of taking over the functions of the parts of his brain that were removed?
Only time will tell.
See? I told you it was a tough month this year. Christmas is three days away and this is the shit that is dancing around in my head.
Not sugar-plum fairies.
Will I get my happy back? The Mr. Positive I was showing so much of, especially over the last few months? Of course. This is a temporary set-back, mainly exacerbated by Christmas, and when Christmas passes, I can get on with some much-needed healing.
And next year, it could be an entirely different story.
A better story.
A happier story.
But this year?
Bah fucking humbug.