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.

But Bennett?

Wow.

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.

Laughing.

Playing.


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.

OUT.

12 comments:

  1. Likely will cost an arm and a leg, but, might be worth having a really good therapist come in and watch what happens when Mommy walks out of the house and then give you real, live, hands on assistance.

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  2. Ken--
    I just wanted to let you know that I continue to follow your story and find myself rooting for you and your family from a distance. I really, really admire your level of honesty when explaining your emotions. Naturally I am wired to be an optimist, but sometimes realize that prevents me from reaching that level of honesty. Anyway, I'm rooting for you..

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  3. I'm with you, completely -- I wish that I'd been there and I would have put my arms around you and cried WITH you. It'll be all right. Not in the optimistic, goofy way but in the real way. It will. You have room enough in that heart of yours to have it be so.

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  4. You know, Charlie is three and some change. He's not normal in a lot of ways, but he's got some pretty decent social skills.

    He's also going through a complete and total mommy phase right now. If I'm around, I'm the only one he wants to hold him. Never mind that Mommy can't carry his big behind for very long.

    I think it's incredibly normal for children to have parental preferences as they grow up. I don't think you can take one slice of childhood and decide that that's it. That's not normal is how Bennett is processing this attachment.

    I also think that many, many children do poorly with a lack of routine. Thanksgiving week was a mess around here because somebody wanted to see his people and it wasn't happening. I know that schedule changes making children crazy is normal--I taught regular children for years and Lord help us All if there's an assembly or some such nonsense.

    No, we cannot see the future, and no, no one knows what Bennett's brain will do, but I don't think it's best to focus on this as the end all be all. Rather, steel yourself for vacations because they suck and look forward to the very instant that things go back to "normal."

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  5. I wonder how much of this behavior is because of winter break at school? It throws my daughter into a tailspin for sure. It doesn't matter what is causing it, it clearly sucks for you. I am sorry for that. I just want to bring you a cold beer and tell you it will be okay. Because somehow, eventually, it WILL be. It has to be. I tell myself that, on a day like today, when my daughter has had seizure after seizure. It will get better. Because if I admit that maybe it won't, I'll lose my fucking mind.

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  6. Electro-shock therapy. Trust me, that's the way to go.

    It will erase your short term memory and you won't remember the shit from this morning.

    As for Bennett, well, I for one think he is lucky to have the parents he has.

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  7. The self-injurous behavior and the rejection sound brutal and heart-wrenching. I'm so sorry you have to go through it. However, the fact that Bennett has stranger anxiety is a good thing, it's a developmental milestone that indicates that his prefrontal cortex is maturing. The way he is dealing with this anxiety sucks horribly, but maybe with the maturation of his nervous system and with lots of therapy and repetition, he can learn to control his impulses and emotions. Sure, there is no guarantee that he will, just like there is no guarantee that the intact part of his brain will take over or kick in, BUT there is also no evidence that these things won't happen. My daughter has no stranger anxiety, nor a sense of danger or fear, which makes for an extremely friendly, "good" baby, but also for a much grimmer future.

    Also, the fact that Bennett has a parental preference and that he plays and laughs with the aid, shows socio-emotional development and suggest that he CAN develop. I know it hurts like hell, but it can also give you some hope for future development.

    I understand that you don't want false hope and BS answers, I always get annoyed when some well-intentioned person tells me that my daughter might just start speaking. Well, she is 20 months and doesn't even coo or make a peep, so that would be a good example of false hope. However, Bennett has words and he uses them appropriately to communicate, so again, he has potentials.

    Far be it from me to minimize the issues that you are dealing with. It's extremely painful and it breaks my heart to read about your struggles. I just wanted to point out that even if it's extremely difficult right now, it's not hopeless, things can get better. I hope I didn't come across annoying.

    Hang in there. You are a wonderful dad. The things that you are dealing with would make the Incredible Hulk curl up in a ball and cry like a girl. And sorry for the longass comment.

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  8. I, like Elizabeth, wished I could have been there and cried along with you and for you.Your words resonate loud and clear the pain you have in your heart and more importantly the the love you have for your son.It is truly beautiful.

    Those cries are healing in ways.Feels like crap after, for a bit, but those deep to the core cries are necessary.Had one the other day and you will appreciate this in ways some can't ..

    Miss Z has, as you know,Down syndrome and CP due to her stroke.Both have a whole lot to do with muscle and tone.One thing,that has always been extremely difficult for her,is to poop ... she'll forgive me for sharing,I know she will!As I really do have a point...To due that deed usually entails some unbelievable pain and discomfort and it is draining on her tiny body and after success and after literally writhing in pain,pleading with her eyes,I hold her she calms down and tries to get a normal breathing pattern back ... I look at her and say ... could this,this simple,normal bodily function not come easy?Why does even this have to be hard.... so I cried the other day.In the sma eway you spoke of.Deep to the core cries and then I moved on.

    What else are we to do,but move on.And yes,it will be alright.Perhaps not in the way we once envisioned but it will be alright.

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  9. I would normally want to fuss about the whole Bah Humbug thing, but I get it. I certainly can't say I know how you feel, but I get it. I'm sliding down a slippery slope trying to hold it together for the festivities myself. Had a sobfest yesterday of my own. A lot just bubbling (or should I say gushing) to the surface. Felt much better when it was over though. Anyway, this is not about me. Just wanted you to know that the Christmas Queen is feeling the pressure too. I'm sorry this is happening with Bennett. I truly am. I wish there was something I could say, but like you said, I'd just be talking out of my *what was that again?*...

    Just know that you guys are in my thoughts often.

    By the way, how weird that I just watched Dances With Wolves on Saturday for the first time in about 15 yrs? I wouldn't have gotten that comparison otherwise. ;)

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  10. Claire
    I've thought about that. If you happen to have an arm and a leg to spare, can you send it over? Truthfully, it is something that I have asked about with Bennett's school, since we cannot afford it. They have shown interest and said they could and would be interested in helping do it. So far nada. Might be time of year. Also might be the tendency of the school overall. It does take a long time to get things to happen there. I have an 'understaffed/underfunded/overworked' theory about them. I do not think they don't care, not in the least. I think on the contrary there is a lot they WANT to do and can't.

    Sonya
    You're wired? Are you some kind of Fem-Bot? Oh behave...

    Elizabeth
    And you should see the room I have in my BELLY. I think I could fit all my readership in there then we could ALL go camping. Though my readership is not all that huge comparably I do admit. Still, I did shoehorn my way into a pair of 36 jeans last weekend. Granted, they were my loosest pair AND I had to do it with some effort, sans underwear, but I got in them and no one noticed and there was barely a Dunlap. And six months ago I was contemplating making the jump to 40's. See? Turning a negative into a positive. That's what I'm about, baby.

    Katy
    Always the optimist, always the teacher. It is as much a part of you as that Nawlins hospitality. Sorry the Ravens beat you guys last weekend. Thought about you. I was tense in the fourth quarter because the Ravens have blown some BIG 4th quarter leads. I do agree that the routine is very important to Bennett, and the breaking of that routine is something that he does have a hard time with, though not nearly to the degree that you might expect. And I should have pointed this out and did not and this is my bad...this relationship thing with me, and the self-injury thing, and the Mommy-attachment thing...this all started about six weeks ago. Long before the schedule change.

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  11. ANewKindOfPerfect
    How I wish I could accept an icy cold beer from a pal. I'd give A LOT for that. I do miss it terribly. I can't drink. Not with the medications I am taking, as great of a relief as a Guinness or a Leinenkugel's Honey Weiss would be right about now. But if you happen to have some happy smoke or something long those lines, come on over. THAT I can do. :)

    Single Dad / Disabled Daughter
    Yeah he is one lucky boy to have me as a Dad. At least I haven't posted the picture yet of me wearing a dress. I do have one. I just haven't scanned it yet. But I will, dammit, that much I promise. Then my life will be COMPLETE!!! Now, about that Electro-shock therapy...

    erika
    Does Bennett have stranger anxiety? I wasn't sure that I gave that impression. Fact is that he does not really have it. He went off to play with the Home Health Aide far more easily and readily than he does his old man. And when Post Office folks come to the door and stuff he doesn't head for ze hills or anything. His anxiety only appears when his mother disappears. Sorry if I wrote it to seem as if he reacted badly to other people. He usually doesn't, and when Mommy is in the room he will interact with other people. I am sorry that your daughter also has no stranger anxiety. It is something that makes me fearful too. The rejection this is a separate issue. The only person he outright rejects a majority of the time though, right now, is me.

    You did not come across as annoying. Not at all. I've always said that everyone lives a different kind of Hell with their Special Needs child. Blogging about it is sometimes difficult. It's cathartic, it's therapeutic, but at the same time it is also important to remember that there is always someone that would trade places with me, just as there is always someone whom I would trade places with. My friend Eddie, the one who died in August, point blank taught me that during the time Bennett's seizures were at their WORST.

    They, he and his wife, had just experienced yet another miscarriage in yet another attempt to conceive. While consoling me about Bennett, he said he would trade places with me in a heartbeat, that's how much he wanted to BE a father. From his perspective, his Hell was losing all these pregnancies.

    You are not minimizing what I am dealing with at all, nor do I think your comment was 'long-ass'. And you gave me some things to think about. Besides, you referenced The Hulk, how could I possibly NOT love that?

    Zoey's Mom
    you will appreciate this in ways some can't...um, is that because of the poop thing? Can I be 100% honest with you Heather? I did not know she had Down's AND CP in addition to all the OTHER things she had. I knew about the CP, I thought she had Leukemia, the epilepsy and the stroke...but please forgive me I did not even know about the Down's. I'm going to be honest and tell you why because I love you and consider you a soul sister. I could never navigate through your blog easily. I couldn't find your history, I couldn't find a summary on Zoey, and I was always afraid to just ask.

    There were tons of buttons and stuff I didn't know led where. But now? It gets weirder. It is loading very strangely. There is no archive anymore that I can find at all, it 'skips' when I try to scroll through it, I don't know how to describe it. It's almost like my browser is trying to handle too much data at one time. It had always had an issue before with your blog, but since you changed it the problems have quadrupled.

    Anyway...I learned a lesson since John died. Don't wait to ask things or say things that are on your mind, just do it. So I'm doing it now since it is on my mind. I want to know the whole story on Zoey, start to finish. Where can I find it? Did you ever write a complete summary or history?

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  12. Holli
    Aren't sobfests awesome? They are so fucking cathartic. As is FusioNog. And, aren't inside jokes awesome? Isn't it great to have something between us that we can reference and laugh at that other people will get annoyed by? We're so COOL. I wrapped my sobfest up last night at around 3:30 AM. As it turns out, not sure if you know this but X-Box Live has a Facebook Application on it. So from around 12 - 3:30 I was looking at pictures on my large screen TV of you and Austin and the Foltz's and the Coleman's and Aylward's and the rest of us who are linked on Facebook and have photos there and of course Bennett and my family and tearing it up all the way and getting it ALL out of my system so that I can be lucid for Carter's sake for Christmas.

    Call it a 'Sweatin' to the Oldies' for my heart and mind. I'm wiped out today, but it was worth it.

    It is weird that you haven't watched Dances With Wolves in 15 years. You should be ashamed. That is a movie that deserves re-watching at least once every 1.5 years.

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