Please read our agenda — a lot has changed since I wrote up this introductory article

So many people lately seem to be coming forward with these amazing stories of how marijuana helped their autistic child. I’m truly happy for these people, but they’re only telling one side of the story. They succeeded. For whatever reasons, their endeavor paid off and made their lives better.

We don’t have this kind of success story to tell, and I think that’s exactly why our story needs to be heard.

Alexander

My son was born almost nine years ago. He was diagnosed with Tuberous Sclerosis, a relatively uncommon disorder that varies wildly from person to person, at just six weeks old. In Alex’s case, the most noticeable symptoms it caused were seizures and autism.

The seizures have been treated with various medications over the years, but the real problem we faced (since he was four or so) was the well-known situation of autism rage. Specifically, he would hurt himself. At first, Alex was happy most of the time. As time passed, his happiness became less common, and the self-injurious behaviors became the norm. To paraphrase from multiple specialists who have helped us over the years, “autistic children sometimes do this, and we don’t know why.”

We talked to behaviorists and a psychiatrist. We tried at least one medication from every family of drugs the psychiatrist felt could help this kind of condition, including Zoloft, Risperdal, Naltrexone, Ativan, Valium, and finally Haldol. Nothing but the Haldol ever really helped, and that’s only because it was a huge dose meant for short-term control — it did the job, but also turned Alex into a zombie.

One last hope?

Late in 2009, we realized we could no longer take care of our son. He was too strong and beginning to get so dangerous to himself and us that the only way we could restrain him was by putting him or ourselves at risk. He bloodied his face regularly, gave himself a black eye a few times, and busted open his lip at least once. (See our videos for some really gruesome footage of the intensity of Alex’s rage)

The thought of letting somebody else take care of Alex was too much to bear, so my wife started doing research on what we could do to help him. We found that there was a possible connection between his Vagus Nerve Stimulator (http://en.wikipedia.org/wiki/Vagus_nerve_stimulation) and psychotic rage, so we pushed hard and eventually convinced the doctors to turn down the intensity of the electric current sent to his brain. After that, his seizures came back, and we had to crank it back up because the one episode was so intense it required an ER visit. Worse still, in the days afterward, his behavior seemed to get worse. I told my wife we needed to call the state and tell them to find a place for him. I just couldn’t deal with it anymore.

Toward Christmas, she found some articles about medical marijuana and children with autism and rage. We were at first surprised that anybody would think of such a thing, but kept digging and the pieces seemed to fit. After some research on marijuana itself, we believed that we had little to lose in trying it. After all, it’s just a plant, and certainly couldn’t hurt any more than pumping the poor child full of valium, right? Scientific evidence seemed to confirm that the worst-case scenario would be an overdose resulting in Alex falling asleep. We simply didn’t consider this too great a risk.

We got his medical marijuana card for the seizures. The law doesn’t include autism or rage in Oregon, but his seizures were a qualifying condition, and if it worked, we could turn his VNS down again and remove some meds that have pretty awful side-effects.

Early successes and false hope

At first, we didn’t know how to give him the medication. Neither of us ever experimented with pot in our teenage years, and didn’t really care to now. We were donated some hash oil, and just made guesses about how much was a dose. Imagine being told by a doctor you had to guess at how much Tylenol to give your child…. Fortunately, unlike Tylenol, marijuana doesn’t have any fatal overdose risks.

Eventually we had some truly amazing results. We almost had it down to a science – 75 microliters of hash oil seemed to calm him a bit. 150 usually made him very relaxed, but a bit too sleepy. There were multiple occasions early on where the dose was so perfect that he became relaxed but very attentive. He explored his world with his hands, something he was very rarely able to do. His hands were the enemy up to this point. If they weren’t tucked inside his shirt, he was beating himself up. On many occasions he brought us clothing to put over a shirt to make it harder to for him to get his hands out. He had become afraid of his own body. But on those few truly magical days when we got the dosing just right, he played. He used his hands to explore. He looked at us and smiled. I can honestly say those were the happiest moments I had known in years.

We were very hopeful at this point, but unfortunately it didn’t last.

We ran out

It’s that simple. Our donated supply had run out. We couldn’t get in contact with a grower, and Oregon law doesn’t allow dispensaries (and if it did we couldn’t likely afford it anyway, based on costs I’ve seen in CA). We got a later donation of hash, but it was a very small amount and didn’t last long enough to matter. We even tried Marinol, but it was available only in capsules. I’d love to see somebody convince a nonverbal child to swallow a capsule.

Alex stopped eating, drinking, and sleeping. Multiple ER visits later, we went through the heart-wrenching process of relocating our son 200 miles from home. There was no place closer that could take him. I used up all my sick and vacation time staying at home to help try to keep him safe, using Oregon’s Family Medical Leave Act to avoid being fired (though my employer was very understanding, I was still concerned about being let go eventually).

We visit Alex a little bit, but it’s about a four-hour drive one way, so it’s averaged about once every two or three weeks. It’s nowhere near enough for a child who has no idea why mom and dad are suddenly out of his life. We’re working right now to move closer to him, but even then we will only see him a couple times a week or so. For the past five years, Alex has been my entire life outside of work. After work I’d care for him to give my wife a break. I took care of him, played with him, and slept in his room almost every single night. On weekends, it was a joint effort, but rarely did I ever get too far from him for very long. He was my world.

Being away from him is the worst thing that’s ever happened to me. We’re less stressed, we have more free time, and finally my other son gets to see me and play with me. But for over two months now I’ve had a hole that nothing can hope to fill.