Wednesday, February 23, 2011

Monsters Under the Bed

That was always the one thing that, at least growing up, the concept alone was enough to scare me to death. Just the idea of it was so creepy to me that you know what I used to do when I was in my teens and even into my twenties and yes...even my thirties?

Yer gonna laugh.

No bed frame.

I shit you not. It was such a vivid childhood fear of mine that I carried it into adulthood, and for years...YEARS, I would not use a frame for my bed. In fact, I believe in the apartment that I had right before Jennifer moved in with me I did not have my bed on a frame.

She thought it weird. That particular photo above is not from THAT apartment, it is from several before that, from my graduate school days I believe, but you get the bed frame. And yeah, I had no closet in that room.

I did not explain to Jen when we were dating why I had no bed frame, because I liked having a girlfriend.

I just said I preferred it that way. I liked being lower to the ground or it was better for my back or some bullshit answer.

Of course, once she moved in, that had to change, and I had to simply lay there, eyes wide open, until I was able to overcome my fear and get a good night's sleep. took a while, but I eventually did.

But fear is a real bitch...and a tough one, and it can grab you by the balls and tighten its grip and often leave you feeling very, very powerless.

Which is exactly how I feel sometimes when I think of Bennett's future. Especially when I see something or read something or hear about something that reminds me of him but is about someone much older than he is.

I was reading Harold Doherty's Blog last week, Facing Autism in New Brunswick, and his post about an article in the Arizona Republic about a young boy, age 12, who has Autism, and his family's painful decision as it pertains to the violent and aggressive behavior that this young boy, named Colin, unleashes upon those closest to him.

The article, printed here on the website and written by John Faherty, relays a terrifyingly real story of a young man with an Autism Spectrum Disorder who had a lot of trouble communicating and would act out much of his frustrations in the form of self-abuse and abuse on others, most often his mother.

Can I be honest? This. Really. Scares. Me.

Like nothing else I have EVER wondered about Bennett.

I get the fact that he is 'only 3'.

I do.

I know it is more beneficial to him for me to be 'hopeful' and 'positive' and I am doing so. I know we have only uncovered mere tips of icebergs here. We are in the process of exploring many possible avenues of addressing Bennett's aggression problems.

But the fear is there. It is real. It has a firm grip on my...well, I mentioned them once, no need to a second time.

And it doesn't help when Jennifer calls me from her car, driving back from the Cleveland Clinic to her sister's house, after the MRI, explaining that while Bennett was coming out of the anesthesia haze (where even NORMAL people are wacky) he bit her so hard that she had a welt that looked like half a walnut, painted blue and red. That Bennett was banging his head and hitting himself and strangers.

I saw this mark when she came home, and let me tell you, it was the nastiest injury I have ever seen on my wife with the exception of the time she severely sprained her ankle in a fall.

It's unsettling, and I am scared.

Bennett once whacked me in the shin so hard with a very solid toy that I crumpled to the floor and tears were streaming out of my eyes as I tried to focus through the pain and actually see straight.

He had not thrown the toy AT me...I was just in the way of the toy. But he threw it because he was pissed and my shin happened to be in the path of that anger. I turned to Jen and through watery eyes asked her a question.

What will we do if he ever REALLY hurts Carter?

What will we DO?

But things calm down, things settle. Bennett becomes the beautiful, sweet, wonderful boy again. You forget. You move on. You have strings of good days. You want to believe that maybe he is 'growing up' or 'growing out of it'.

And then, he does something else, or I read articles like that one, and I ask myself the question again.

The fear returns.



  1. When I was around 11 or so, I watched a really old movie of Jane Eyre. I didn't understand it, except that there was a crazy woman somewhere running around. I was scared of that "crazy woman" for decades. I get it. But, you might of told Jen the bed on the floor made sex safer...
    As for your son...scary indeed. But, some kids do grow out of it, some can be "trained" out of it, you may learn what the triggers are and avoid them, and, worst case scenario...meds. Hope it just all goes away, my friend.

  2. It's good to acknowledge your fears, however rational or irrational. As for Bennett, I think of what Dr. Frymann, the osteopath who I revere once said to me when I worried about the future. She said, "We'll just see." That has been true for me always -- you take what comes as best you can when it comes.

  3. I'd love to give you warm & happy thoughts.

    But A) I feel like crap and B) Most days I'm right there with you. I was ready to throttle Trevor right in the middle of Toys R Us today. And that was before he tried whacking me!

    Although, I do think Elizabeth makes a good point. We need to try and take each day as it comes. And let tomorrow unfold on it's own. I'll try if you will...



  4. Two times, when my 8-year-old son came out of anesthesia at Mayo Clinic (for MRI and some other epilepsy-related procedure), he started yelling "I want to kill you. I'm going to kill you." He was yelling it all the way down the hall as they wheeled his cot back to his room. It made me really worried. There have been other things he has said as well that raise an eyebrow. But he is just a little boy and I think he was in pain and frustrated and this was just the worst thing he could think of to say.

  5. OUCH! There has GOT to be a way for the medical group out there to work with you all to lower the level of aggression. Of course that won't work when he is under anesthesia...but other times, it could.

    No...I'm not sure what I would do would unfortunately be trial and error...but for that to happen, it has to start somewhere (rewards for good behavior, consequences for bad).

    (Dude, is THAT why you made me sleep under the bed when I spent the night in 8th grade?) (Yeah, I know, I walked into 100 clever responses...but I had to take the shot.)

  6. My son Javier shows an aggressive behavior. It started after the summer, he was biting, scratching and pulling hair to everybody in his way. Although he had some burst of rage on frustration, most of times there was no apparent reason to do this. Javier's sister is 10 months old and I felt The Fear just as you described... However, our neurologist told us that medication could help.
    We are reluctant to give more meds to our son, but we really trust our neuro, so we first tried Tiapride (which didn't work) and then we tried Risperdal in a very low dose, and it's working wonders 'till now. He is more focused and improving in school, and he is notably less aggressive (though he's still shows some burst now and then).
    Don't get me wrong, The Fear's still there, but at least I have a little more control over it

  7. Claire:
    We are considering Meds, I need to go over our struggles with getting in to actually see someone about it, and our struggles to adjust his diet. As for the sex thing...we were already practicing safe sex so I doubt she would have believed me. Ba-DUM-bump.

    Agreed, I could spend all of my days consumed by dwelling on what 'might be', you are right. But that is a part of what fear is...not knowing what lies around the corner. Conquering that concept means, well...conquering your fear.

    Lately I have grown to detest myself for avoiding public situations with Bennett. It isn't fair to him. But I feel like I have no choice. Until we get this behavior under better control, I do not think there is an alternative. I would not even attempt to take him to a ToysRUs. And frankly, what makes me the most frustrated anyway is the fact that I walk in there and I don't have the first clue about any toy in the entire store other than a frisbee that Bennett would have any interest in. It's such a crap shoot with him.

    Wow. I get what you are saying and it makes a lot of sense but that would have rattled the crap outta me.

    Dora's Daddy:
    It's like what we talked about on the phone (which by the way, I really want to do some time where it is NOT always about what is happening to me or my son or family, I do care about YOUR life too)...I don't really KNOW what to do. Or where to begin.

    We've tried all kinds of things, none seem to have lasting effect. As far as the 8th grade goes...well, no I only made you sleep there for your own protection. :(

    You said Risperdal is 'working wonders til now', which suggests that things are beginning to change again. Is the drug beginning to not have as good of an effect on him as it did when he first started taking it?

  8. I don't know if this is of any help to you, but when Charlie was about four weeks old--not even home from the hospital--Hubby and I discussed "worst-case scenario," which, in our minds meant some kind of nursing home. We talked about it, about where a line might be for use, and made our peace with it. That's not to say that we WANTED it, but facing that head-on really made it easier to deal with the idea of raising a giant unknown.

    And I know a fantastic woman here who had to have her some put in a group home because his Autism is such that he can't handle very many changes in his life. The home/school provides a measure of security that he can't get in a traditional home environment.

  9. Katy:
    That's actually a very healthy strategy, talking it out and kind of having a confab about it verbally to get it 'out of the closet'.

  10. I didn't mean to suggest that Risperdal is not working anymore, I guess I may be just afraid it will at some point.
    Javier's been on it for 6 weeks (4 of them slowly increasing the dosage) so it's been only 2 weeks on the "normal" prescription. According to Javier's neuro, it's sort of incremental and we should see steady improvement.
    As you guess, some days are better than others; 2 week we had an horrible weekend, but last two or three days have been specially good.


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