A lot has been going on lately and not much time to write. Alex’s mood has been very erratic, and we can’t really figure out how to explain it, so it’s just another mystery. He’s on allergy meds now, so we can’t blame seasonal allergies this time (though maybe he has extreme allergies, who knows). His list of medications is pretty long now — we requested a print-out of it just Sunday — and we don’t really like the idea, but we’re considering trying Haldol again. We’re also going to have to push hard on Rapamycin when we see his neurologist in a couple weeks or so. We hate all the medicating, but there doesn’t seem to be any option for getting hash. We will keep giving it as we can, but until we can get real legal help, we’re just stuck.
Speaking of which, I did get an email from somebody pointing out flaws with the controlled substances act. While the information is enlightening, it doesn’t much matter – we aren’t the ones trying to give Alex a controlled substance, nor is Alex trying to medicate himself. We’re trying to get the facility’s staff to be allowed to medicate him, and as long as the federal government doesn’t allow caregivers to handle medicine, no loophole that’s specific to the patient will do us any good. I appreciate the information, but it won’t help our case any.
And speaking of his facility, we’ve found out that some of the staff read this blog on and off. I’m actually rather surprised to hear that, but it’s good to know they’re following the battle. Everybody working directly with Alex knows just how dangerous his tantrums can get, and I’d be surprised if any of them are against getting him the proper medication. So far as I can tell, it’s the high-level administrators who don’t want to put the center in jeopardy by helping us fight for Alex. And while I understand their concerns, it’s a little sad to see people who don’t work directly with Alex (and probably have never met him) choosing to “just say no” rather than take a closer look and see what that child endures. I’m sure somebody high enough up would have some ideas for us. If the federal government can give AIDS sufferers cannabis, I bet they could find some way to make an exception for truly exceptional situations like Alex’s.
Also, our grower said if we need it, he’ll still grow a little for us for cost of soil and water (he actually offered to do it completely free, but I can’t really do that to him after this grow was done free already). He doesn’t have the time to deal with indoor plants, but he said he would tend a single outdoor plant if it would help. Given how much we have right now, it’s not a big deal, but it’s good to know we still have options.
We also found out that we are going to need to heat up the hash I made before Alex can get any benefit from it. We’re still running off the donated hash from around February or so, so we know it works, but when that runs out we’ll be using the new stuff. That is, assuming I can figure out a heating technique that gets hot enough to make it work, but doesn’t burn off the THC… and is still easy to eat, since that’s Alex’s favorite way to take it (strange but true). It’s nice to finally end the debate about ingesting “non-activated” cannabis, though. Our grower ate about half a gram of hash (he’s a patient as well as our grower), which is probably about the equivalent of five joints, and had no effect. He smoked a small amount and said it was good stuff. End of debate, at least in my mind.
Finally, to the three people I promised I’d call about two months ago…. Sorry. I make a lot of excuses, so I’m not sure there’s much to say other than “I’ve been busy”. I barely call my own family these days. I intend to call you all at some point, but I can’t promise when it’ll happen. Visiting Alex, spending time with Ben, and just trying to maintain a “normal” life are higher on my priority list than anything else will ever be.
You promised to call me? Huh. I didn’t know that. 😉
Miss you.
xoxoxox
Proof that I never call my family 🙂
Little sister, I was speaking of course of the non-family members I’ve been meaning to call.