Even so, I need to put up some updates so here I am taking a late lunch break at work. I wish I had some video or even just a few pictures to go with it, but oh well.

Since we started giving Alex the tinctures, we’ve seen more happy visits than unhappy visits. Of course, it’s impossible to say for certain that it’s the tinctures causing this, as his home has reported that he’s generally been in a good mood lately. However, on a recent visit, things started off pretty rough. It wasn’t until about 30 minutes after the second eyedropper-full of tincture that Alex started to improve. And this improvement wasn’t just a “hmm, maybe he’s a little better” situation — it was dramatic. He went from desperate clinging / hitting to freely running around and playing, smiling, and using his hands to explore.

For those who may not know much about the severity of Alex’s situation (check out the videos), when he’s having a rough time, his hands are either being held (possibly restrained) or are hitting him. His SIB intensity on this visit was probably a 7 out of 10, but dropped to about a 2 after the tincture seemed to kick in.

In other news, we’ll be moving again. I’ve gotten a new job at another university which will get us at most 30 minutes from Alex, and possibly much closer. It’s essentially a voluntary demotion, but I get to keep my current salary, so it only affects my future maximum salary. I hate moving, and new jobs are always stressful, but I sure am looking forward to being in Alex’s neck of the woods again!

In Washington, another measure is going to be on the ballot. It’s got some concerning per se DUI law written into it, but I still urge people to vote for it. Why? Because that per se DUI law will likely go into effect eventually, as it has in so many other states

In California, there were a few ballot measures in need of signatures to get on the ballot. Unfortunately, the deadlines are too close, and it is being suggested that efforts be targeted to the Repeal Cannabis Prohibition Act: http://repealcannabisprohibition.org/ or http://www.facebook.com/RCPA2012.

The Oregon Cannabis Tax Act still needs a ton of help and the deadline approaches fast. If you live here, help out!

Sign the petition to support President Molina’s efforts to discuss legalization in Central America. Put Biden in his place by stating that we have no business telling Mexico, Colombia, Guatemala, or any other country how to deal with the drug problem that we have created.

As always, make sure your elected officials know how you stand on things like HR 2306, and consider letting them know you consider this issue important enough to not vote for them if they don’t support it.

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.

I should note that some of the confusion may be due to the Treating Yourself article — as in any article trying to get a lot of information across in a concise way, there are a lot of details left out, and some elements are slightly changed to simplify the explanation of the situation. The article is a great way to expose people to the damaging effects of prohibition, but it does gloss over some details that can make our plight seem confusing.

Unfortunately, the story is a lot more complicated than it seems at a glance. I tend to sound like I’m saying, “cannabis is Alex’s miracle drug”, when I really mean that it is his best option, and probably better for his situation than any drug available. Cannabis is an amazing substance. But Alex’s situation is extreme:

• We know cannabis helps, but we couldn’t get consistent results in the past. While we believe 100% that we can help Alex a great deal with cannabis, we do not currently believe that it would manage his rage to the degree necessary for us to care for him full-time.
• We still don’t know the best way to dose, the best strains, etc., and we get a lot of conflicting information when we look things up or people offer advice.
• When Alex’s moods are particularly bad, he doesn’t eat anything. We couldn’t get medibles down him more than a few times (and the brownies we made tasted pretty good to those who sampled them).
  • We have a lot better luck with raw hash, but he still gets into moods where he’ll refuse to eat it.

There are logistics problems as well. If we take Alex out of state care, getting him back in, if that proves necessary, will be very difficult. Previously Alex’s condition was absolutely terrible – the videos posted are a very representative sample of how he behaved nearly every day for the two or three months prior to placement. For about two weeks he barely ate, slept perhaps two hours a night, and on three or four occasions needed chemical sedation in the ER (massive Ativan and Haldol doses). Even in this condition, it took the state something like three weeks to find a placement for Alex — and that was “rushing” things. If we took him back home and then six months later said he needed to be back in their care, it’s not likely we’d get him placed in less than a month. During that wait, it’s unlikely that I could work even part-time.

We also have accepted that Alex could not be with us forever. Even during his happy times, he can be very dangerous. He has phases where he’s happy, but wants to watch “interesting” reactions from people. He will get these reactions by scratching or pinching, and sometimes pushing, hitting, or even head-butting. I believe he’s trying to be playful and just doesn’t know his own strength, but the fact is that he’s still going to be dangerous at times.

We have to consider Alex’s brother and sister as well. When Alex was with us, his younger brother was literally neglected at times. He and I rarely spent time together. I was taking care of Alex from the time I got home until the next morning when I went to work. On weekends, if I had free time, it was because my wife was watching Alex for a while so I could get a break. That was hardly “quality time” with my other boy. Respite care went primarily to my wife since she had Alex and his brother alone all day long. Our trip to Disneyland last year was wonderful for Alex’s brother. It was his first vacation that included me. It was the first time we really did something big where he was the center of attention. That trip absolutely could not have happened with Alex in our home unless cannabis were to completely reverse his anxiety and rage 100% of the time.

We have to consider the longer-term implications of every decision we make. I have now got a stable job with union protection at the university. My children can attend college for a fraction of the normal tuition when they’re ready. I have decent health care which gives Alex far better options than if he’s solely on the Oregon Health Plan. I have generous vacation and sick time, which only gets better the longer I stay, allowing me to spend more time with my family. I have a decent pension plan so I don’t have to add “how will I retire?” to my list of stressful concerns.

Stress in general is also an important factor. My wife and I still grieve over the “loss” of Alex. We still have a lot of stress trying to be sure he’s getting the care he needs, and seeing his bad days. But it is nothing like it was during our crisis period. We were nearly incapable of doing anything that wasn’t directly related to Alex’s care. Sleep was uncertain, and probably 3 times a month, he would force an all-nighter out of me, even when he was having good days.

It’s not that we don’t think cannabis will help, it’s that we don’t believe it will help enough. Alex isn’t an autistic child with appetite problems. He isn’t a child with severe seizures but who is otherwise okay. His rage is the main problem, and very few professionals we’ve dealt with have ever seen a child so severe. Cannabis could help him immensely, but we aren’t convinced that it would stop the rage episodes, and our actual experiences using cannabis to treat him make it tough to believe otherwise.

When dosing is just perfect, he will be insanely calm and happy… for a few hours. In the videos of his happy days, we had amazing results, but they didn’t last all day. The mornings were horrific, until the medicine kicked in. After the medicine wore off, he would start in again with rage. If we dosed him again, results were unpredictable. He might calm down and sleep, but sometimes the rage would still break through. When he did calm enough to sleep, it was sometimes too early, so he would wake up at 3am. On waking up, he was in a rage episode again, and if we dosed just perfectly, we still had about an hour of intense rage before he would calm down again.

When asked why we don’t just bring Alex home, I try not to react defensively, but it’s hard. We question our decision all the time. When things are bad, we end up questioning our value, our love for our child, wondering why we can’t be better people, wondering what made us so weak that our love for Alex can’t overcome the challenges of caring for him, wondering how we could be so selfish as to let Alex pay for our shortcomings. There have been times even in the past week that we’ve had to look at the list of “whys” to remind ourselves that we didn’t make a terrible mistake.

Intellectually we know we have made the right decision, but emotionally… it’s a constant battle. When the question comes up, it’s a tough one to answer without wanting to lash out and say, “you try it sometime, and let us know how it goes.”

Last month I made a big post on Huffington Post, and got a lot of traffic, but it turns out it was more due to a share on Reddit than anything else. So to all the fine people on r/trees, thanks! If you haven’t seen r/trees, it’s a great place for 420-friendly people to exercise their right to free speech, something cannabis consumers too often feel they can’t (or shouldn’t) do.

This month, Alex’s story appeared in Treating Yourself and we got another huge surge of traffic, and I’ve been trying desperately to keep up with the emails and comments, but I’m falling behind. All the same, it’s a small price to pay for giving Alex’s situation more exposure.

In addition, it appears my sister has done another Facebook bomb, bringing in a bunch of people as well. So thanks, sissy!

Here’s hoping this traffic can legitimize cannabis in at least a few people’s minds who would otherwise have been against it, or thought medical use was a joke.

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.

People throughout the world need to ask themselves:

• Why is it we make an addict’s compulsion illegal instead of treating the problem properly?
• Why not spend our money treating people instead of putting them in jail?
• Why not regulate the supply of dangerous drugs, like we do with alcohol and tobacco?
  • Meth would never be as dangerous as it is without prohibition — it’s being made in more dangerous ways each time we shut one down
  • Look at the dangers of K2, or “fake pot” some time. That has actual dangers associated with it, and would not exist if pot were legalized — it was created to legally get a pot-like high!
• Why not sell and tax the drugs like we do alcohol and cigarettes?

Sure, we need gargantuan warning signs, and perhaps even regular consultations for people who voluntarily choose heroin and the like. Yes, we need safeguards in place. But there is absolutely nothing good about prohibiting drugs. Ron Paul has the balls to say this to the American people. None of the other candidates does (though Gary Johnson would at least talk about cannabis). Whether the people like what they hear or not, they will hear it if Paul gets the nomination. Some of them will have no choice but to consider it. Some people will convert, because enough thought on the matter and we realize prohibition is just wrong, period.

I know it’s tough to consider legalizing all drugs, but everybody should at least think it through. In the end, cannabis is really the one we need to get off the controlled substances act to help kids like Alex. Decriminalizing the rest would, in my opinion, help the country and help countless addicts, but they are not my priority right now. If cannabis gets to Alex regularly, I’ll change my focus.

Later in the day we got a call letting us know that he was having really bad behaviors (hurting himself a lot) and they wanted to try Ativan to “break the cycle”. We agreed, and he calmed down, but I hate Ativan. It’s not that it’s no good, and it’s not even particularly dangerous when it’s used just once every week or two, but it seems so terribly unnecessary if we could just throw a big dose of hash when he got like that.

I got a message on the About page from a mom in a similar situation (same underlying condition, even: TSC), and it just tears me apart. These children are having their lives ruined by ailments we don’t fully understand, and then matters are made worse because even when we’ve run out of options, we’re still not allowed to turn to cannabis. It’s absolutely absurd. It’s tragic, it’s disgusting. And I feel like it’s completely out of our control, which just makes it that much worse.

Things will suck less next week.

We’re in this awful catch-22. We can’t take Alex home, because we don’t know what, if anything, will stabilize him enough for us to care for him. And we can’t try marijuana, the only medicine that showed any promise for his rage, unless he’s living with us.

The Washington legalization initiatives are spending more time with internal wars than coming together and just pushing for any small step forward. The OCTA here in Oregon looks like it again won’t gather enough signatures, and gets almost no press coverage (I see stories about the CA and CO initiatives, and sometimes about the WA ones, but never ours). Hell, we couldn’t even convince the voters to approve dispensaries when they were put on the ballot in 2010. As I recall, Oregonians favored our current “find a grower or do it yourself” approach by something like 65% to 35%.

I’m really hoping CA gets its initiative passed, but what will that mean for Alex? At a minimum, another two years before Oregon has a chance to move forward.

Sometimes it feels like we have absolutely no control over Alex’s life. Obviously we could try bringing him into our home again, but that’s just not realistic. I feel awful admitting it, I feel like I’ve failed him and there’s some way I could be stronger, but the fact is I know I can’t care for him again unless his rage is completely gone.

Talks some about the science, the controversy, and specifically some of the newer information about the medical value of high-CBD cannabis. Sounds like “Canatonic” might be a good choice for Alex based on the new information I’m learning, and putting it into a glycerin tincture.

Thanks to everybody at Huffington Post who replied to my comment and helped me discover this information. I have little hope of getting Alex dosed in his home, but whenever we see a major shift in thinking, I’d rather have the information necessary to give Alex what he needs immediately.