Alex’s story, and in particular the picture Jim Carrey used is not about vaccine safety. It is a story of extreme autism and self-injurious behaviors. It is a story about TSC (Tuberous Sclerosis Complex) and its association with autism. Alex safely received his vaccinations — his genetic disorder was present at birth.

We believe that families who are struggling with extreme autism and severe problem behaviors need more help, in their own communities, than they are currently receiving – gaining access to highly sophisticated Applied Behavior Analysis such as what Alex was provided at Kennedy Krieger Institute’s Neurobehavioral Unit at Johns Hopkins, gaining access to mental health providers trained in highly complex cases such as Alex’s, and providing more options and resources in local communities to those families who are no longer able to care for their loved ones in their own homes. We also believe that the medical community at large needs to look more closely at the potential for medical marijuana in treating these severe behaviors.

There is hope for individuals suffering from severe problem behaviors who have autism (and/or a developmental disability), however, many families have given up hope due to lack of resources.

We feel Mr Carrey was irresponsible in using our son’s image to further his agenda, and feel he should issue an apology for using our son’s image without permission. If Mr. Carrey’s image was used this way, legal action would almost certainly be taken.

We’re not happy that Mr. Carrey used our son’s picture, but we are happy to use this attention to spread the word about our son’s actual struggles.

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

I don’t know if we’ll just ditch the blog entirely or not. Facebook could cut down on maintenance, make quick updates a bit easier, make discussions easier (no logins or spam issues), and so forth. I don’t want there to be two places to go for information, so I’m not really sure what we’ll see in the coming weeks. With the surgery and everything (next week), things will be too crazy to do much.

A brief update, though – yesterday I saw Alex for a while. When I arrived, he was raging. When I gave him the tincture, he calmed down immediately. This doesn’t always happen, and certainly not predictably. And I know it can’t hit him that fast. But maybe it helped him by way of our ritual simply reminding him he was in for a somewhat calm evening. Every time I visit now, I try to do the exact same thing right off the bat: take him to the car, give the Dixie Botanicals CBD extract, give the high-THC tincture, go for a drive. We don’t know how much it’ll help, but we know that it usually helps a little, and sometimes it helps a whole bunch. Although he can’t say so, I’m betting he’s aware of the connection.

It’s impossible to prove that either tincture made a difference, but he sure changed his mood abruptly, and the happiness stuck around for the duration of my visit. Whatever the reason, it was a great visit.

Anyway, here’s hoping the story gets aired this time. The reporter put us at ease right away, asking us very informal off-the-record questions, and questioned me for a half hour or so about more in-depth Alex-related stuff. There were two “hard questions”, but I think my responses will help people understand the “why” behind our decisions.

And I was very honest about everything. I didn’t try to make cannabis out to be a miracle cure, because while we know it helps, we don’t know if it could ever bring him home, replace all of his other meds, etc. We know it’s a good option, especially for his rage, and super-especially if we can get a more CBD-rich strain. But we don’t know if it will bring his rage from a 9 to an 8 or from a 9 all the way down to a 1. I don’t like having to admit that it might only help a little, but we simply don’t know for sure. The only thing I can say for certain is that it helps at least a little bit, and gives him more happiness in an otherwise very shitty situation.

I also tried to explain why long-term complications of cannabis don’t worry me, but I think I didn’t get that out clearly enough. So if you are curious, here’s the rationale:

• Cannabis cannot kill no matter how much you take – death from even mega doses of pure THC is ridiculously rare.
• Alex’s other medications have horrible side-effects, (two included death: Lamictal and Amitriptyline) and most can cause major problems if too much is taken.
• Long-term effects on the developing brain for other meds are either unknown or known and horrible. Cannabis long-term effects being unknown isn’t scary given what he’s had to deal with, assuming we can replace meds (which we think likely if we could get a regular dose)
• Cannabis has been around for thousands of years and we still “don’t know” long-term effects? This leads me to consider the long-term dangers as either non-existent or else very mild.

We’ll see how things look in the final edit, of course (and we still don’t know if/when it’ll air), but I feel pretty good about the interview.

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.

ABC interviewed us in April. They were going to run a story about Alex’s situation, and it was going to be aired nationally, not just locally. I wasn’t going to say anything here until we had an air date.

But I’m tired of waiting.

I don’t know what happened. Maybe somebody got scared by the controversial situation, maybe our interview didn’t give them the sound byte they needed, maybe they just legitimately haven’t had time to get it fully production-ready. I don’t really care at this point. I don’t even know if I want the story to air now.

One problem with not airing quickly is that things change so fast. At the time, I felt that a lot of blame lie on the state for not having good information about medical marijuana and for not enforcing its medical marijuana laws in the group home Alex lives. I also felt that we needed better medical laws, and that legalization, though important, wasn’t the most pressing matter to me.

Today I still blame the state for a lot of the information aspects, but I realize why the home won’t dose Alex. The recent raids in California have shown that the feds will put all kinds of pressure anywhere they want without regard for the patients in need. Because some people are abusing a system, they’ll use that as the excuse they needed to shut it down for everybody.

Also, because of these events, I no longer believe in medical marijuana legislation. We either fully legalize or keep letting the government decide everything for us. Who is sick enough to get medical cannabis? Who provides it? Novartis? Pfizer? Perhaps both… but I am willing to bet it won’t be something we’re allowed to grow ourselves.

So even if they do air Alex’s story, my current state of mind will not be represented.

The Discovery Channel, on the other hand, is taking the controversial stories ABC won’t. They aired Weed Wars recently, and I discovered it just featured a father giving his child medical marijuana for seizures. Bravo to Discovery for taking on such a controversial subject!

I wish it were Alex’s story, of course, but it’s still a great way to get people to understand that cannabis is a really good thing. I want people to see the good in cannabis, and then see Alex’s situation, because I want people to see that prohibition is doing harm to children like Alex. What if cannabis could help all the kids with self-injurious behaviors? What an impact that could have on the lives of tortured parents.

I don’t know how the rest of Weed Wars will play out, but I think it’s a big step for the network to take, and I applaud them.

Cash was diagnosed with brain cancer prior to his second birthday, and had to undergo major chemotherapy. Cash’s condition became very serious. He hadn’t eaten in 40 days and was very near death. His father tried medical marijuana, which allowed Cash to eat, fight, and endure the chemotherapy, and he was even declared cancer-free for a little while. It sounds like the tumor has come back now, sadly, but at least Cash has cannabis as an option right from the start this time. Read more here: http://www.dailymail.co.uk/health/article-1383240/Boy-brain-cancer-cured-secretly-fed-medical-marijuana-father.html.

Storm was diagnosed with Multiple Synostosis Syndrome, which causes his bones to slowly fuse. It’s a terminal condition and very painful. Georgia, his mother, tried medical marijuana when he was 15 to ease his incredible suffering. Without marijuana, her son’s pain was so bad that he would literally scream for hours. Read more here: http://www.thestar.com/news/gta/article/796638.

I feel I failed in getting my main point across, but I think it applies in all three of our cases: prohibition is failing our children, and medical laws only barely help.

Marijuana is clearly able to ease the suffering of many serious ailments, but as long as it’s even partially illegal, we won’t know exactly how best to administer it as a medication. For Storm, it works well when smoked, but he’s forced to the black market to get a strain that’s actually useful. This of course becomes costly and potentially risky, but the Canadian government has very limited medical marijuana laws (though they are better than ours in the United Stated, from what I’m gathering).

Mike, Cash’s father, lives in the U.S. and has to deal with the same problems I deal with. Though states have legalized medical marijuana, it’s still federally illegal. There’s very little research into the medical value of cannabis, how different strains affect different problems, which methods of ingestion work best, and so forth. And now that the Obama administration is attacking the dispensaries and growers, our children may not have any access to cannabis outside of the black market.

Tune in to the show tomorrow at 8pm: http://live.norml.org

Here’s hoping we can get a story somewhere that shows people just how powerful medical marijuana can be for children whose only alternatives are to beat themselves silly or else take medications with serious, risky, and well-known long-term dangers.