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 that...at 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, School...you 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.