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).

We are trying a new product called “Dixie X Dew Drops”, which are supposed to be a pure CBD (Cannabidiol, a non-psychoactive component in cannabis which appears to be responsible for pain management as well as “taming” the high given by THC) extract from hemp. We have only used it four or five times due to the difficulty giving it to Alex when he’s in a really awful mood. We haven’t noticed much when we give that to him by himself, but three times we gave him the CBD extract and his tincture. Two of those three times, Alex’s mood stabilized really fast and he had some of the best visits in recent months.

His tincture is likely high in THC and low in CBD. By itself we’ve had mixed results. But with the CBD extract, two visits that seemed to be going badly ended up great.

Unfortunately, even with the great moods, Alex still won’t get out from his wrapping without hitting himself a lot. I don’t know when he’ll get out of this phase again, but it’s just heartbreaking to watch. And there’s always the thought, “Is this the best we can do?” If his calmest moments still require him to be restrained, it’s hard to keep holding out hope.

I’ll try to keep updating, but it’s tough to stay motivated when we’ve been at this for so long with practically nothing to show for it.

Remember to vote “yes” on Measure 80, I-502, and Amendment 64. I’m certain that with unrestricted research, cannabis could help many children in Alex’s shoes. Even if it’s not the miracle we keep hoping for, it’s still helping more than other medications Alex is on.

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.

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.”

The interesting thing is that the hash concoction (hash + coconut oil) seemed to pull him out of a very aggressive, bad mood. When he arrived, he was hitting his head with his hands very hard, and doing his “chin snap” where he bashes his chin into his shoulder, causing an audible “snap” from his teeth colliding. I gave him hash early and he slowly pulled out of the bad mood.

As he was getting happy, we introduced him to his baby sister, and he was adorable. He even moved his head very gently toward hers in what appeared to be a “nose kiss”, something he has been fond of doing with me. It was unbelievably sweet.

Unfortunately, this didn’t last long. His calm slowly got replaced by a frantic happiness where he was increasingly more aggressive as time passed. By the two-and-a-half-hour mark, I had to call his home and tell them he needed to be picked up, because he wouldn’t stop head-butting, biting, hair-pulling, and slapping me. His younger brother was getting very scared, and at one point asked a question that just crushed me: “when are his parents coming to pick him up?” He realized he’d misspoken pretty quickly, and it was an innocent mistake, but it tears me apart all the same.

With prohibitionists fighting so hard to keep marijuana illegal, and to keep science from finding its way into the debate, we really are at the mercy of the government. Could the hash have been too strong? Too weak? The wrong strain for calming Alex? Too high in THC? Too low in THC? Too much or little of other compounds? We know from experience that cannabis does amazing things for Alex under the right circumstances, but we don’t know how to replicate those circumstances. As long as the DEA can be judge, jury, and executioner, we will probably never know how to properly treat our son, and many other parents will never even think of cannabis as an option even when their situations are dire.

We took some video during a recent home visit (about a week ago) demonstrating just how much rage and anxiety Alex still has. He appears to be “stuck” in a behavior of hitting his chin into his shoulder, and even his bath time doesn’t fully calm him down.

Since Alex’s placement, I haven’t provided a single new video. I need to get better about that – our video is the only way people can see Alex; my words don’t do the situation justice. So when Alex was having a really tough time, I asked my wife to get it on video.

We ended up sending him home after just over an hour with us, one of our shortest visits in a while. It’s just another in a recent string of bad visits, though this one was possibly the worst. I can’t remember how long it’s been since we had a truly good visit. 6 weeks? 8?

If you watch the full video, you’ll see that he’s torn open both chin and shoulder due to the behavior. After he left, we made the decision to call the home and authorize a dose of Ativan to calm him down and hopefully break the pattern so he could rest and heal. Yesterday’s visit we saw that the wounds are indeed healing, but he’s still hitting his chin to his shoulder regularly enough to keep the sores from properly scabbing over and closing up.

If Alex had cannabis in his home regularly…

• Would it calm his rage and anxiety?
• Would it remove the need for some of his other medications, thereby reducing potentially painful side-effects like headaches?
• Would he be able to focus and explore the world around him, rather than being a victim of whatever agony is causing him to tear up his body like this?
• Would he be happier?

I can’t claim the answer to all these questions is “yes”, but I suspect at a minimum Alex would indeed be happier. Of course, until we’re given a chance to try the only medication that ever showed promise, we can only guess.

To be fair, we got about a 50/50 mix of happy and sad today, but we ended with Alex very unhappy. Ending on a bad note means he probably continued to be unhappy after we left, and the fact that he started out so happy makes it feel as though we failed him in some way we just couldn’t manage to figure out.

The worst part of all was that I offered him hash mixed with coconut oil like we had done last week. Early in the visit, we saw the same kind of mood that we have seen so many times before — happy for now, but maybe not for much longer. We made the decision to offer him his hash because as I’ve said before, the worst-case scenario with giving him cannabis is that it won’t do anything noticeable.

The problem is that he wouldn’t take it. When he was happy, he wouldn’t take it. When he started to get a bit aggravated, he still wouldn’t take it. When he was raging, he wouldn’t take it.

I can’t force him to eat the hash. If I try he’ll likely just spit it out anyway. So I just sat there and watched Alex go from happy to raging.

Scratch that. The worst part isn’t that we offered him the hash. It isn’t even that he refused it. The worst part is that we didn’t even think to bring him something that would help coax him into taking it. A milkshake, some candy, a burger, …. We just didn’t think about bringing him a treat, and more often than not that’s the catalyst for convincing him to take his “special medicine”. If only we’d done that, maybe his day would have turned out differently.

The most concerning issue right now is Ativan. Though it’s largely dealt with, it’s still something I find horrible.

We saw some behaviors last year that were very concerning and seemed like possible seizures, and in some cases these behaviors interrupted Alex to the point where he couldn’t do much of anything for long periods of time. We authorized Ativan for situations where he had these behaviors to the point that they interfered with his normal routines, and thought that the people in charge would be responsible with its use. We never really even gave it much thought because it was only mentioned a few times after we authorized it.

In his new facility, they are sending us reports very regularly. My wife and I were stunned that in the first three weeks of January, Alex was given Ativan something like six separate times, and often two days in a row. One of the reports described Alex having bad behavior and doing “hip thrusts” on the floor. After doing something like nine of those over a period of a few minutes, he was given Ativan. Ativan because the kid was unhappy and likely trying to self-soothe via masturbation. His behaviors were like this in most reports – somebody noticed something a little bit concerning over the course of a few minutes at most, and he was given a dose of Ativan. I don’t know who was responsible for that, but it sounds like it all boils down to very poor wording in the order that allowed Ativan in the first place. I suspect our original version was completely replaced somehow by a doctor or something, as we had very explicit guidelines and time limits for Ativan administration.

So after being furious with the new facility and getting various levels of management involved, my wife discovered that this had been happening at his prior center and at his school. Somebody at his school was giving the order to give Ativan and from what we hear it was not an uncommon occurrence!

Ativan is a relatively safe medication from what I’ve read, but it has known long-term issues in adults, and no research I can find about effects it can have on children. I’m disgusted that our government allows people to just dope up my son whenever he does something that is tough to deal with, but won’t allow a regular low dose of hash or hash oil. Cannabis can’t kill him, but Ativan can. The hash oil in a few cases did wonders not only for his behavior, but also his attentiveness and ability to focus. Show me a kid given an “emergency” dose of Ativan who can focus on ANYTHING.

The situation is under control at this point, and we’re going to be checking all incident reports very closely, but all the same, I find these events very distressing.

On Christmas eve, however, our visit was absolutely awful. Alex had a tantrum that rivaled his old ones at home, at least in terms of intensity. It didn’t last as long as his old ones used to, but there was an incredible amount of hitting, scratching, kicking, and pretty intense biting. We got very few smiles out of him during the entire two hours we were there. I was extremely worried for him when we left – he was no longer beating himself up, but he was far from happy.

We got a quick video to show what he’d done to his arms (mostly biting, by the looks of it). Our concern here was that these weren’t marks he got during our visit, which tells me he was probably having as bad a day on the 22nd or 23rd as he did on the 24th.

Christmas day, we visited again, and with all the presents and excitement, he had a really great day. A good portion of his day was spent in a state of over-stimulation, I think, but he got calmed down by the time we left, and was actually sitting down and eating dinner. This is a big deal to us, because usually when we overstimulated Alex, it would end badly. He’d become completely obsessed with a toy or other object, and be unable to move beyond it. He would eventually get to where he needed the toy, but wasn’t getting the happiness out of it that he wanted, and would progressively get more and more angry. Usually these behaviors would result in some spectacular tantrums.

No tantrum was witnessed by us on Christmas.

Here’s hoping he starts to settle in and we see our happy little boy on a regular basis.

Saturday, we saw Alex for a little while and it was a good visit at first, but he started to act really off after about forty-five minutes. He pulled us inside (we’d been walking around and playing with him out in front of his home), insisted on a shower (I think the hot water is about the only soothing thing for him some days), and proceeded to be on-and-off self-injurious for the rest of our visit.

Monday he was a complete nightmare. We got a little bit of video, but we aren’t allowed to record video near the other children, so we could only get video while Alex was outside. I hope to post those videos, because while they aren’t the most shocking behaviors he’s ever shown, it’s important that people see he still has some incredibly rough times. Anyway, we slipped him some medicine when we got him out into the street near his home (hey, the street ain’t their property, so it’s legit!), and by the time we were leaving, about 45 minutes after the medicine, he was significantly calmer. He wasn’t incredibly happy, but he was no longer a danger to himself.

That was enough to convince us the hash wasn’t to blame.

We also got two wonderful visits in yesterday and today. We didn’t give him any hash, as he didn’t seem to be at all uncomfortable in any way, and we’re not keen on rocking the boat at this point. If we can’t give him a constant low dose, then I’d rather just throw a mid-sized dose at him only as necessary.

Unfortunately, we’ll be out of town for a bit and won’t be able to see him again until probably Monday or Tuesday of next week. I just hope Alex doesn’t think we’ve abandoned him or something – we really have no idea what he’s feeling when his world changes like this.

Bad news today, though. Our grower had some serious family-related emergency come up, and was unable to keep the plants healthy. He’s lost a few of his own, and a few of ours. He was growing for free, and he’s decided he can’t take the time anymore to try and juggle the demands of growing and tending so many plants while also focusing on what’s more important: family. I may retract our prior claim that we don’t want donations, but we’ll see what we are able to harvest and worry about it when we’re actually within a couple months of running out of hash. When I made hash in late June or early July, I got about 6.5 grams out of it, which is the equivalent of about 100 medium doses — enough to give him a dose every visit (3x a week) for about the next seven or eight months. Once we harvest, even with the smaller-than-expected yield, I imagine I’ll have at least another 12g of hash, and possibly as much as 30g.