In other news, the U.S. Senate is considering a bill to reschedule cannabis. Please support the Carer’s Act so that kids like Alex can get cannabis without jumping through absurd hoops. (For instance, if we go on vacation, nobody is legally allowed to dose him)

Of course, he’s still having to be wrapped up all the time. The video I posted recently still shows a more easygoing version of Alex than what we’re seeing lately. He’s super happy, but seems to need his security items a lot more.

We’ve also done another interview, this time for a TV station in Eugene. Honestly, it didn’t give us as good a vibe as the interview for KPTV, but I am not sure why. Maybe too much recent stress, maybe the weirdness of Alex’s recent mood, maybe the fact that, until Alex recovers, everything just feels a bit less stable than usual. I just hope they can do a good job editing so we don’t look as weird as we felt.

There’s another interview coming up that I’m excited about. It isn’t with a mainstream media outlet, so it’s more of a “preaching to the choir” situation, but it’s with somebody I’ve wanted to speak with since 2010 sometime. More on that when it’s done.

Speaking of mainstream media, they seem disinterested in the story now. They want something super sensational, and we just don’t have it. Alex isn’t cured, cannabis hasn’t brought him home, we’re not users ourselves, and so on. There’s nothing that really pisses anybody off when they see Alex’s situation. The KPTV poll showed that 95% of those who watched the story agreed that in Alex’s case, using cannabis was something the viewer considered a good idea. I think CNN and others were hoping for something more controversial, or they wanted to hear us make an outlandish claim or something. When they hear us tell them the simple facts, they stop showing interest. Cannabis helps Alex, and by a noticeable amount, but that’s all it does. We’re hoping with the right strain and regular dosing, it’ll help more. It’s absolutely ridiculous that he can’t get it regularly. That’s all there is to it.

Important action item!: Support the new measure to end federal prohibition! Visit that link, click “Support”, put in some basic information, and your elected member of congress will be notified that you support HR 499. (Obviously this is only good for U.S. citizens) The more support it gets, the more pressure congress will have to act. As far as I can tell, this bill does not legalize cannabis – it simply takes the federal government out of the role of enforcement, giving them the same general power they currently have over alcohol. This isn’t ideal, but it leaves it to states to decide what to do about cannabis. In Oregon, we’d be able to get a real prescription for Alex. In Oklahoma, they could keep it completely illegal for however long they liked. In Colorado and Washington, licensed stores could sell it to adults without fear of federal intervention.

I’ll try to keep updates coming, but things are very busy

We are all very tired, and have a ton to do, so there isn’t much else to say about what’s been going on recently.

I’ve added a new video to the videos page to show a more typical representation of how cannabis helps Alex. The dramatic difference we posted a long time ago was posted to show the potential and to show how amazing cannabis might be if we could get the right dose figured out and get it to him regularly. Unfortunately, it’s also made a lot of people think cannabis cured Alex of his rage. And, to be fair, when we first took that video, we thought it was going to cure his rage. It wasn’t until we found we couldn’t get a consistent result that we started paying closer attention and seeing that cannabis usually helps, but the effect is more like a two-point drop on his “rage-meter”, if we measured it on a scale of 1 to 10. In order to avoid explaining it again and again, we put together a little video a couple weeks back:

Alex post-MMJ, January 2013 from Dad on Vimeo.

Is it a miracle plant that fixes everything? No. But it helps more often than not, and no medication we’ve tried has been able to do so without putting Alex in a zombie-like state (which cannabis does not do).

First, a huge thanks to everybody who has given us support. Maybe we should have set up a Facebook page a while ago (see Alex’s story on Facebook if you haven’t already), because the support there is tremendous, and it’s a bit easier to respond to folks there than on this blog. It also is much rarer for Facebook to crash compared to the server running the blog. Anyway, thanks so much – the support we’ve gotten has been HUGE.

Here are some highlights:

• We’re getting new high-CBD clones tomorrow which should make for much more effective medicine for Alex
• We’re going to be giving RSO (Rick Simpson Oil) another shot, as somebody locally is offering us a donation
• Our facebook page has nearly 2300 “likes”, and so far I believe I’ve seen only one person suggest that cannabis might have concerning side-effects
• Multiple parents in Oregon and elsewhere have asked for advice in case their child needs cannabis – people with similar situations to us, who, like us, never realized cannabis was an option

So on to Alex.

We got up at 5am on Tuesday, waited forever for surgery due to what I’ll politely call “communications issues”, and it was about 2:00pm before Alex entered surgery. We finally got Alex into the PICU around 6:00pm, and he was out of it until around 11:00pm… but from that point on he was awake and trying to smack himself all night long. A combination of factors made that night downright awful: Karen (Mom) had to go back to the hotel to care for our baby girl, the hospital didn’t have a sitter ready that night, and Alex’s group home didn’t have anybody available yet to watch over him. It ended up being up to me to stay with him all night, keeping him safe. I was there until 7:30am mostly alone, other than the night nurse who was kind enough to give me breaks now and again for food and such.

The rest of the week went a lot better. We got a full-time hospital sitter in addition to dedicated, well-rested staff from his group home, ensuring that no single person was going to be exhausted and without breaks. Alex was hating being cooped up, but he got better each day.

Friday we left so grandma could go back home. She had been with us for over a week and a half helping out with Alex’s brother, but she needed to get back home, so we had to cut our visit with Alex a bit short. Honestly, I am glad to have had a chance to rest after such a crazy week, but it’s still tough to leave the kid without his family

So tonight we go back up and spend more time with Alex. Tomorrow he should be leaving the hospital, and we should be coming back home again, but this time with the new plants I mentioned above.

Here’s hoping all goes well and when the new plants are able to be re-cloned and harvested (which is still a long ways away as I understand it), we’ll have a medicine that makes an even bigger difference to Alex!

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.

Writing becomes even harder when Alex’s mood takes a turn for the worse.

Unfortunately, after several good weeks all in a row, the last few have been pretty unhappy. And the worst part about it is that on the few occasions we try Alex’s tincture, nothing at all seems to happen. After thinking the tincture might be just what Alex needs, now we’re once again in the situation of wondering what to think. Is the tincture breaking down? Does a glycerine-based tincture simply not remain potent for very long? Are other medication changes a factor? Were the previous successes just coincidence?

As usual, we have no idea. The lack of good research on marijuana and autism makes it hard to know what to do, so we just watch as Alex goes up and down again. Not much to report when this happens. Here’s hoping he breaks out of it soon.

Not a lot else to say – too much stuff to still take care of today. Here’s hoping things can slow down in the next week or two….

It’s hard to say that the tincture alone is responsible for his behavior, because they’ve reported a better mood at his home as well. But it’s also very unlikely that it’s just coincidence. While his overall mood has been better, we’ve now seen two or three situations in the recent visits where Alex started out unhappy and hitting, and turned calm and happy within an hour or so of the tincture administration.

Of course, since we can only dose him when he visits, we can only guess at what might happen if he could get this in his system regularly.

Even more unfortunately, our grower is moving out of the state within the next six months, showing us once again what a nightmare our restricted medical laws currently are. We’ll have to deal with setting up a new grower, and that is in addition to the new laws which make it a $250 a year expense to keep our OMMP card and name a grower.

The silver lining of all this is that our nation, and the west coast in particular, seems to finally be realizing the benefits of cannabis and the problems with prohibition. Oregon may have two pro-cannabis initiatives on the ballot this November. Colorado will definitely vote on legalization, and looks fairly likely to pass it: the Colorado democratic party officially supports legalization!

Here’s hoping 2012 is a better election year for everybody’s favorite herb. It won’t just help recreational users; the people who need it most, who have tried dozens of other medications and just need some pain relief, would benefit greatly from full legalization.

Alex’s moods have been, as I said, pretty up and down. But today was noteworthy. Not only did he have a good visit, but it was the first time we tried his tinctures (I started creating these back in early January). Each tincture started with some Black Domina kief mixed with glycerine, was rotated daily, and yesterday baked in the oven for an hour at 170 degrees Fahrenheit (to ensure no THC was destroyed). The weakest mixture was one gram of kief with 100 grams of glycerine, and I gave him a spoonful of this today. We can’t say if it was the strain, the glycerine delivery, or just plain luck (he arrived fairly content to begin with), but it was a really good visit. He was calm the vast majority of his time with us, and happy for a decent period of our visit. We’ll definitely be trying the tincture again to see if this is a repeatable experience. If so, I’ll have to mix a bigger batch, and soon.

Last weekend, on the other hand, was not so good. Alex was doing well at first, but had a terrible sore on his lip that had apparently started off as merely a split lip. We took him to the doctor, and the office was so busy we ended up waiting about three hours to be seen. Alex’s mood of course degraded during this period, and by the ride home he was venting his frustrations on himself as well as those around him. Usually his violence is directed inward, but when he’s really upset he lashes out at whomever he can, and he was hitting, scratching, and kicking anybody within his reach. And to top it off I hadn’t brought any cannabis with us (it’s often difficult to dose him at his home since it’s my understanding we can’t actually bring the stuff inside), so any hope of calming him that way was doomed before we even arrived.

Fortunately, after seeing the doctor, Alex was put on some antibiotics for the lip, and when we saw him today it looked a whole lot better.

On Saturday, we tried out a whole lot more hash than usual. A typical amount is about a tenth of a gram. I gave Alex .15g, waited 30 minutes, and gave another .15g, for a total of three times our normal dose. He had arrived at 10am pretty upset, but had calmed down a great deal by 11 or 11:30. He went from needing direct, constant protection to playing a bit on his own.

Unfortunately, by 1 he was back to a really bad mood, which contradicts what I’ve heard about ingested hash. I thought it was supposed to last for several hours, but whatever we saw was at most two hours. Given this fact, it may be that it wasn’t the hash that helped out, but simply coincidence.

Whatever happened, we got a four-hour visit which hasn’t happened in a long time. At least two of those hours were good, and only about 30-45 minutes could be described as really bad. Next time I may shoot for 0.5g total and see what happens. If he falls asleep (worst-case scenario for a cannabis overdose), then hey, I can take a nap with my kid for the first time in over two years.