While Alex transitions to a new home and new staff, it’s critical that his KKI behavior plan is followed very closely so we can see how well it works in a less controlled environment. They have reported a fair amount of behavior reduction, and we want to keep his world as stable as possible for a while to monitor continued improvements, backsliding, etc. Adding in cannabis at this point would be a huge variable that would make quantifying the behavior plan’s success very difficult.

If we had ever managed to figure out precise dosage, the right strain, and other factors for a consistent experience, I might feel differently. But with the unknowns around cannabis and Alex, dosing him right now would just be a wild card he doesn’t need.

That said, once things stabilize, we’re hoping to get him closer to us (or us closer to him, though we swore we’d stop trying to follow him around after having uprooted the family twice already), at which point we will absolutely be pursuing cannabis again. With so much research coming out in favor of medical cannabis, public opinion changing (about time), Oregon finally allowing dispensaries, and more states (including Oregon) looking likely to legalize fully by 2016, I think we would have a significantly easier time than when we first tried it.

Don’t ask us about the plane ride home, though. While the flight out was surprisingly uneventful, the flight back was a nightmare, and I hope the poor kid never has to go on a long trip again.

The following clips all come from about a one-hour visit last weekend. Today’s visit was only slightly better than this.

Fair warning: the last clip is bloody. We didn’t get much video once he was that intense, but we felt it should be shown to those who still believe cannabis is too “dangerous” to use on children.

30 months later, still intense sibbing from Dad on Vimeo.

If this is your first time coming to the site, here’s the general situation:

Alex is our son, diagnosed with autism and severe self-injurious behaviors (sibbing). He was placed in a group home over two years ago because of behaviors much like these. We found that no traditional medications helped without completely knocking him out. He’s been on Haldol, Ativan, Valium, Zolaft, Risperdal, Naltrexone, Amitriptyline, and many others.

Cannabis (medical “marijuana”) has been able to make a big difference on several occasions, though it seems to work best when he’s on the verge of behaviors. Once he’s in full-swing, absolutely nothing short of chemical sedation helps.

It is our belief that regular, small doses of cannabis could at least reduce the intensity of these episodes. Prohibition of cannabis, however, makes it impossible to get his group home to dose him, not to mention we have no idea what strains are best, what dosing would work, what form would be the most effective, etc. Prohibition doesn’t curb use or abuse, but it does take away what might be the only medication in existence that we haven’t been able to properly try out. It also inhibits research into how cannabis might be able to help children (and adults) in Alex’s situation, because the federal government is so unwilling to permit serious, in-depth, whole-plant experimentation and study.

We no longer believe anything short of full legalization will matter, because the federal government refuses to take medical cannabis seriously, and refuses to reschedule it or even discuss it. We hope states start to legalize and force a showdown with the federal government, because it’s time science became a part of the government’s mockery of a discussion.

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.

I’m still pretty angry that we aren’t able to get him the medicine he needs other than by giving it ourselves. His current meds are bringing him relief, and that’s obviously our #1 priority, but I want to be able to give him hash more than once every couple days. That’s the stuff that really showed a lot of promise, has the potential to cut back his other meds tremendously, and seems to be very safe, even if the hype were true about MJ causing IQ losses (in Alex’s case, we’ll gladly take that risk over the risks of his current legal meds). So far as I can tell there are no long-term studies to show the effects of his current medications in a growing child. It’s ridiculous that we can’t use the medication we believe to be the best for his situation. Hopefully I can get going this weekend on making some hash to bring him (got the bags, got the bucket, got the trimmings), but it’s completely unfair to him (and us) that he can’t just be given a medication that is safe and effective.

The really bad news is the facility he’s at is meant to be short-term, and they’re pressuring us to get him out of there and into a long-term facility. Fine, we’re okay with that, we know it’s not his final home. But they’re pushing hard to get him up to Portland. As long as we have to administer his medications, that is NOT an option. We can’t likely get to Portland more than once a week, and that won’t work for medicating him properly. Even if I can medicate 3-4 times a week, that’s insufficient, but it’s certainly better. I told them we aren’t willing to put him so far away if they’re unwilling to medicate, and their response borders on “too bad”. They’re wiling to put him on a waiting list for a closer location to us, but they aren’t keen on keeping him at the short-term facility for much longer. Why? Because there are too many “crisis” situations that need the space more…. I’d love to see people in a worse crisis situation than our son. Even the kids currently there seem to be a lot easier to manage than Alex during his bad times.

And you know what’s really great? The cause of these crises is budgetary in nature. More centers are having to close the doors to kids like Alex because our state can’t balance its budget. And through all this, a measure that could help the budget a little bit is getting almost no attention: the OCTA! Fix the budget, help the sick people who can’t afford black market (read: “good”) marijuana, get cops dealing with real criminals. COME ON, OREGON!