Monday, October 11, 2010

Let's Face It Dear Readers, This Weekend Sucked

I can't coat it all up with the sugary-sweet stuff this time really, as much as I would like to. I know I am being watched very closely and I am supposed to be projecting a 'positive' outlook on things, but I gotta be honest with you...this weekend was about as much fun as a two-hour Enema.

Something was bothering Bennett and he was just not very easy to console.

He gets this way sometimes, when something bothers him, and we can't figure out what it is. And since he cannot communicate what it is, if we can't, using trial and error, figure it out, he is essentially, well, pardon my French, screwed*.

Which sucks because, as his father, I hate seeing him suffer. Nobody wants their kids to suffer.

Now I do not know why Friday into Saturday he was suffering, but I do have some idea why Sunday was so difficult. He had something on his ankle, a bug bite, that was swollen and obviously itchy. Benadryl oral medication and topical cream seemed to help there, and we think it was some kind of Mosquito or other insect bite he got from Saturday night when he was outside for about an hour.

There was that brief moment when we considered that MAYBE we had a bed bug problem...but none of us have any bites, but since it is such a problem in Ohio don't think it didn't cross our mind. But we have not traveled and we are pretty good about isolating the kids bags and stuff when they come home from school.

On Sunday early evening, in one of the quieter moments, during a conversation Jennifer and I were having, something occurred to me that had never really occurred to me before, and it sort of bummed me out. Maybe it shouldn't have, but it did. She already had thought about it, but I never had, I don't know why.

Bennett has never, since the Infantile Spasms and the Temporal Lobectomy, said two words together. He barely says any words now without prompting, though he will say some stuff and babble and the like, but as far as having a vocabulary of words? I wouldn't say he has one. But I noticed this weekend that I could not get him to say two words side by side. Not once.

And I suddenly realized that since this whole thing started I don't think he really ever has. He doesn't identify things using words either, without prompting. For example. He can sort of say the word 'cereal'. I mean...if I say the word 'cereal' he will repeat it, and it sort of sounds like it, to me, but I know what I am looking for but you might not know what the word is if I didn't tell you beforehand what the word was.

You get what I'm saying, yeah? I know that shit will improve over time, I get that. But if he wants cereal, he won't say cereal. If he sees the cereal container, he will walk over to the cereal container on the counter-top and start screaming. He won't even reach out or point to it. That's how he indicates that he wants the cereal.

Now, this is probably some behavioral aspect to his condition that I do not understand, but need to. Because I assume, though I am probably wrong, that there might be some way to circumvent this, or maybe reach past this. Maybe? I don't know, I guess I just want to believe it. Maybe there isn't.

Anyway, it's these kinds of things that make our Life feel so jammed up.

In that 100-Day Kit from Autism Speaks that I mention in an older blog, which I started reading again, there is a statement that I found intriguing. It goes like this.

'It is sometimes said that if you know one person with Autism; you know one person with Autism.'

Therein lies the problem, at least for me. There is no single solution, no plan to create that I can then follow and implement and check off each task as I complete them. I'm that kind of thinker. There are simply hundreds of possible solutions, just as there are hundreds of possible causes for his condition in the first place, just as there are hundreds of possible outcomes for his future.

Maybe I just feel slightly overwhelmed lately, or it could just be emotional exhaustion from a very draining weekend. Hell, even Jen could see the end of the evening on Sunday after a particularly difficult 'discussion' she was smart enough to nip it in the bud and say 'Look, all of this is just because the two of us are fried beyond fried...let's just let it go.'

That much is true, but I also feel a little conflicted, because when I look at Bennett's development in the 'overall grand scheme of things' if I am more honest with myself I can say that he actually has made progress in a lot of areas but perhaps not as quickly as I was hoping for and what in fact is more likely to be true is that I do not have the right knowledge base to properly define my hopes.

Isn't that an interesting way to put it? DEFINE my hopes. And that's exactly the thing I would like to be able to do. Maybe that's why I am so interested in understanding his condition better, so I can give my hopes a clearer definition. Because now, they are cloudy, filmy...full of grit and dirt. And that, my friends, is no way to have hope.

Isn't hope something that serves one better if it is more clear? If it is simplified in its nature? I dunno...

That, and the fact that MY progress in fixing those things about myself that I want to grow/evolve is actually much slower than I had hoped for PROBABLY influences my emotional state of mind when it comes to how I see the world, and my son. There is frustration in many ways that my progress, my own evolution, is measured in Inchstones too, and it isn't helping my son for me to be moving at this speed. I need to pick up the pace, for his sake.

I know that.

You just move so much more slowly when you have so much more burden on your back, it's one of those things we call Truth with a capital 'T'. So I'll give myself an assignment, publicly. One thing I've been meaning to do and haven't done yet is read up a bit more about ABA Therapy, so I'll hit that harder this week. It said in the 100-Day Kit that we should be doing more of it at home if they are doing 35+ hours of it at his school.

Yo, might have told US that!

There ya go. Action. Re-Action. Newton would be proud.

I'll let you know what I find out by Friday.


*I had a different word in here initially. But I changed it. See? I can fuckin' EVOLVE.


  1. Awww shucks -- I'm so sorry your weekend sucked. That's totally not what I was hoping for.

    Can you give a list of the words Bennett will say without prompting (like maybe "Daddy" and "Cracker")and another list of words he'll say when coached (like "cereal")?

  2. You know,with all the crap I have to deal with Sophie, my heart goes out to those people whose kids have some form of autism. It's just so complex,it's hard to know where to start. But, Ken, I think ABA is a good idea. You know, Harold swears by it (and Yes, I know, some people despise the whole thing). Anyway,good luck with it. And there will probably have to be some tough love moments when it comes to communication...use the word or no go...I don't know. You will eventually get your head around day at a time. Remember, you are still really, really early in the game. Give yourself a chance to work out the bugs.

  3. Wow. Just Googled ABA therapy (I didn't know what it was...I probably should have) and was impressed with the video's of ABA in action. Neat stuff.

    Good quote too, though at first I was like, "Huh?" But I got it.

    I know you and Jen will keep building your own vocabulary of Bennett communication techniques. I wonder how he does with his brother?

  4. Sorry about the weekend.Totally understand.On many levels.Communication or lack there of is huge with Zoey.And frustrating.For all of us.Most especially Zoey.

    The term,"I am fried.",is used often around here and I wish we had an easy solution.I think saying there is no solution,but rather a plan for coping is our best defense.In our case,we know that as time goes by,instead of getting easier,we know things will get harder.So figuring out how we don't spontaneously combust,is something we better jump on sooner,rather than later.

    Sorry to have worried you.All is well now.But let me tell you,a child missing for 2 hours,is something I wish on noone.Every horrific news story I have ever read or heard of,I was living.I was not grace under fire.Not even close.Just recovering now from the emotional trauma my body went through.Not good.Not good at all.But better now.Thanks for caring.Means the world to me.

  5. Kim:
    My next blog entry will answer this one.

    He actually receives ABA therapy now. 35 HOURS A WEEK. The thing that I have not done is study it on this end enough. I think I have been expecting that things were just going to be fixed. I thought that by now we would be...somewhere else. I also did not know that you were supposed to do it at home, and I don't know how to do it. So I need to learn.

    As far as how he does with his brother, it depends entirely on his brother. It depends on whether Carter wants to interact with him on an intellectual level, which is RARE, most of the time he just wants to wrestle, which I don't like. So it kind of sucks. I don't want Bennett injured.

    How DO you cope? I don't know how you do. You seem so calm, so balanced, and you yet you deal with so much crapola in your lives. Watch so much pain, see all these families lose their children. And yet somehow you have kept your faith, keep your's nothing short of astounding to me.

    Thanks for clearing that up. I cannot imagine that horror. I lost track of Bennett once for 20 seconds when I realized he made it out the front door without me knowing. He was in the driveway and I grabbed him. It changed my perspective on every single aspect of how we manage how he is 'watched'. I cannot imagine how what happened to you will change yours.

  6. Trevy is slightly ahead of Bennet. And even then it's murky. He does not say two words together much at all. And never without being coached multiple times first. And it never sounds like two words. It sounds like slurred words. Actually...everything he says sounds slurred. Only those that know him well can understand him. He has a slew of single words...and can use them to indicate needs/wants.

    For instance we hear "paaaaaaaa" all day long. Which is iPad to the unTrevytrained ear. And it's very clear that's what he wants. But if he's hungry...he just screams much like Bennett. If he's thirsty screams. If he wants to go outside...goes to the door and screams. On occasion he'll through in an siiiigh. Trevy slur for outside. :)

    Communication. Phooey. We're making progress...and I do celebrate that. But not as quickly as I'd like. And certainly nothing near what I suppose I'd hoped for post surgery. But progress is progress. Right?

    Our ABA therapist makes a convincing arguement that PECS helps bridge this gap that we're in. That we've been stuck in for how long now? We'll see...

    Actually...Trevor is in his bed throwing everything reachable around the room as I type. Which is Trevy speak for get me outta this dang bed right now!

    Better go...


  7. I don't dare get Bennett an iPad. On the one hand we can't afford it. On the other, the boy won't even watch a TV show on signing (he will lick it though) and he would probably slide the iPad through the crack under the basement door to listen to the cool sound it made all the down the wooden basement stairs.

  8. Try getting this book in the library:
    He has some great examples of making your child get a little frustrated so that they will push through and use the words they know to communicate.

  9. I am applying to the state for a six week loan of an iPad with Proloquo2go to evaluate it.


A Beautiful Blank Page

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a tem...