Alex’s situation hasn’t changed a lot since his return from KKI. We’ve stopped with the cannabis tinctures despite having a wonderful donor (TJ’s Organic Gardens), because we just couldn’t figure out what he needs. We’ve found that while our initial struggles were lack of knowledge and supply, our struggle now is figuring out how it’s actually affecting Alex. His inability to communicate has always made medications difficult, but in the case of cannabis, this country’s bullshit paranoia has made research so spotty that it’s 100% up to the parents to guess at dosage, strain, etc.

So it’s with a lot of frustration that we decided it wasn’t worth the trouble to keep trying. While we still believe in cannabis, it’s just not going to work for Alex until there’s a lot more research and understanding of which components (THC, THCa, CBD, CBN, etc.) are best for different ailments. And as long as that’s the case, we just have no choice but to watch the idiot lawmakers keep screwing up the rules instead of making smart, compassionate decisions.

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)

In 2010, Alex was placed outside our home. That was probably our worst experience, and he went to places that weren’t able to really help him move forward. Even after the actual crisis placement, the homes were still focusing on keeping him safe more than keeping him happy. (And sometimes they weren’t even doing much to keep him safe) We moved to Albany so we could be closer to Alex, who had been placed temporarily in Salem. Right before Christmas, he was moved to the longer-term home about an hour away from us.

Even when we moved to Eugene, Alex was still a good 30 minutes from us, making daily visits impractical. We kept with the MMJ on our 3x a week visits, but it wasn’t likely often enough for him to really get much out of it. Just before Christmas of 2013, Alex went to KKI for six months, and obviously it wasn’t worth keeping him on the Oregon Medical Marijuana Program. KKI was literally across the country, so cannabis wasn’t an option.

When he came back from KKI, the only available home was in Salem again. So he was over an hour away again from June through most of December of last year.

Just before Christmas, he moved to Eugene. Ten minutes away. I’ve even biked down there in about 15 minutes. This was the first year since 2009 we were able to feel like a family for the holidays. It was absolutely amazing.

Alex is closer to us. Alex is in a home managed and staffed by people who work hard to keep him safe, happy, and engaged.

But as if that weren’t enough, his proximity means we can start looking into MMJ again. And recently dispensaries got legalized here in Oregon, so we’ll have a lot of options for figuring out what works and what doesn’t. Furthermore, recreational pot will be legal in July thanks to a surprisingly decisive vote on measure 91, which will mean a lot less BS trying to make it so both my wife and I can legally transport medicine for him. (For those unaware, there are three spots on a normal MMJ form that allow transportation and possession of cannabis: the patient, the grower, and the caregiver)

Put it all together, and I have to say, I’m very optimistic about Alex’s future for the first time in years.

I wish I had the time and energy to reply to everybody who has commented and offered us advice. I’ll try to at least sum up where Alex is today compared to that last post in April.

Alex’s mood hasn’t really improved overall, but we have found a better level of dosage for the hash oil. By giving Alex just the tiniest amount (which multiple people suggested in direct and indirect ways), we haven’t had a repeat of those first two doses where Alex had a negative reaction. We’re back to the point where we’d say we see a minor improvement in his mood, but it’s still far from the incredible improvement we saw the first few times we gave it. We’re not seeing better results than we did with the tincture alone, so (as usual) this just feels like a frustrating guessing game. If nothing else, at least it’s a different strain with different properties, so we’re able to offer Alex a bit of variety.

And we still can’t get Alex “unwrapped” for more than a few minutes at a time, though we’ve found he likes taking baths now more than he has in a while. This is a small step forward, as (obviously) he can’t wear a wrap while also bathing.

We’re working on getting Alex into the Kennedy Krieger Institute, which is all the way across the country, but has an incredible in-patient program that has shown remarkable success on another child very similar to Alex. I’m not sure what we can reasonably expect to see, but it sounds like there is some potential for major improvements. We just got a recommendation from a doctor at OHSU, so at this point it’s more a matter of “when” than “if”, which is sort of exciting but also stressful. We’re terrified of such a long trip with Alex, but we’re convinced that we have to give it a shot. We’re also not sure how we’ll afford it, so we’ve started on a fundraiser. I’ll post a link to that once we’re sure we have everything ready and worded correctly and such. Hopefully insurance covers the bulk of the expenses, but we’re not sure how we’ll afford the basics like traveling out and back, and a visit or two during his multiple-month stay.

In general cannabis news, the U.S. now has twenty states (40%) with some kind of medical marijuana law. The Illinois law is the most recent, and unfairly restrictive (no help for children, even if they have a terminal illness), but it’s a step forward all the same.

Uruguay is about to become the first nation to legalize and regulate cannabis (assuming the senate vote turns out as expected). This would be a huge move, totally unprecedented as far as I know, and you can bet I’m eager to see this happen.

And, of course, the legalization in Colorado and Washington has, so far, not ended the world or brought on the apocalypse just yet. In fact, I have yet to hear about the many fatalities due to the previously claimed huge rise in “stoned driving” incidences. Or surgeons coming to work stoned. Or people no longer being able to hold down a job. Or the “gateway” effect destroying everybody’s lives.

Maybe with all this good news, we can finally start doing REAL research and figure out why some forms of cannabis are so beneficial to certain people.

Simple: recreational use just doesn’t matter. If somebody really and truly wastes their life feeding an addiction all day every day, that’s up to them, and chances are they’re already doing it. Maybe with illegal pot, maybe with legal alternatives like alcohol. Maybe with something totally unrelated like video games, internet porn, or whatever. But pot itself isn’t the problem with people like this – it’s about as addictive as caffeine. Only a handful of people will actually abuse pot to the point of it affecting their daily lives.

And heck, I’d rather see a bunch of people throwing their lives away to pot than alcohol. At least the high folks are fairly safe to be around.

Additionally, in places where cannabis has been legalized or decriminalized, use hasn’t skyrocketed. Depending on your source, you can find “proof” that use has gone up or that it’s gone down, but no studies even hint that the more 420-friendly nations have had concerning societal problems due to cannabis being more available and accepted.

So if we accept that recreational use is no big deal, then we still have one question: why not just be happy with medical cannabis laws?

Easy answers:

• The federal government is full of SHIT on this issue and won’t allow cannabis to be rescheduled, so medical laws are still at odds with the federal government – which means places like Alex’s home can cite federal law to avoid dosing a person who could truly benefit.
• Along the same lines, the government will push fake therapies on us like Marinol: a synthetic, pure THC pill which costs MORE than black-market cannabis, and lacks CBD, CBN, and other extremely beneficial cannabinoids! THC by itself is just unpleasant from what I’ve heard, and even the super-high-THC strains of cannabis still have some amount of the other cannabinoids. To put it another way, if nature offers us the whole plant, the government has no right to try and push synthetics that only have one small piece of that plant unless very clear and obvious evidence shows the other components are dangerous. (So far, the only cannabinoid anybody is actually afraid of is THC, and this plant has been with us since the dawn of man)
• Medical cannabis laws have been considered a joke by so many that some states are really cracking down – deciding who is “sick enough” to get medical cannabis. Even here in Oregon, we couldn’t have gotten Alex on the OMMP (Oregon Medical Marijuana Program) without his seizure disorder. Intense self-injurious behaviors wouldn’t be enough.
• In states where cannabis is now legal, a person in need can get a small amount of cannabis from a friend (or in CO grow their own) and try it THAT VERY DAY. We didn’t have that option – it took weeks to get an appointment, get approval from the doctor, and get a dose to try out. It’s impossible to say for sure, but we feel those weeks could have made a huge difference in terms of figuring out the right strain and dosing if we’d had better options like somebody in CO might have.
• We’ve given the government time to accept medical use, and they keep saying, “hell no”. Full legalization in CO and WA has forced a new conversation to take place, and the more states that force this conversation, the more likely kids like Alex will have a new option.

So whether it’s 2014 or 2016, if you live in a state that puts legalization on the ballot, please remember that legalizing can be of tremendous value to medical users, especially in states where medical laws are jumbled and confusing, or where patients are left with almost no guidance on the issue.

And for the skeptics: you pay for a pee test and I’ll take it. A few people somehow actually think Alex’s story is a front to get me high. It’s appalling, but I guess that’s what happens with nearly a century of propaganda against cannabis.

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).

One was from Noelle Crombie who published a biased, scare-tactic-laden story about medical marijuana and children. On the one hand, I am glad I didn’t do that interview. On the other, any exposure shows even more people that there are pretty normal folks considering cannabis as a last resort when conventional medicine fails… even for children. Either way, I was very disappointed in that kind of reporting, and I’m worried as hell about doing an interview with this kind of “media climate”.

Another interview was offered a while ago, but the reporter ran into something that kept her from following up… but when the OregonLive article showed up, she contacted me within a day or two to re-offer an interview, stating that “there continues to be a lot of misinformation about its effectiveness wrth [sic] children.” She could be trying to smear Alex’s story, enticing me in by acting like a supporter… but it’s probably worth the risk either way, because again, the more people who share stories like Alex’s, the less “scary” it becomes, especially to parents in horrible situations like ours.

The third interview was canceled about two days after it was offered. I’d been really worried at first, as it was a Fox News program, but now I’m actually kind of unhappy it was canceled. Even if it were spun to hell, it was going to be live (no editing to misquote us), and with a fairly sane host (i.e., not Bill O’Rielly).

Hopefully whatever happens, more people get exposed to the fact that cannabis isn’t an evil thing, but its prohibition can be.

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.

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.