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.

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.

And we were told repeatedly that there was no way to tell for sure if Alex was in any pain, dentists didn’t see anything concerning in a very brief look at Alex’s mouth, and putting him under for a quick exam didn’t seem to be worth the risk of anesthesia. And after they discovered he had major problems (via x-ray), they still made us wait two weeks to get the teeth fixed.

We pushed many times to get him seen sooner, trying to tell them that clearly something was wrong, but Alex can’t say he’s in pain, so they feel confident that not helping Alex won’t actually get them in any trouble. It’s so very easy to just ignore a suffering child when his mother claims he’s in pain. Ignore the fact that she has had an uncanny ability to tell when something is wrong:

• She diagnosed Alex’s seizures before a doctor.
• She diagnosed infantile spasms when the doctor continually assured us there was nothing to worry about, up until they’d been going on so long that he had no choice but to double-check.
• She diagnosed the autism which Asante lied about and continually tried to deny, until we forced them to get an independent evaluation from a specialist who told us that within a few minutes she felt he was likely autistic.
• She discovered his first major tooth problem when dentists were sure there was nothing to worry about.
• She discovered Alex’s staph infection when he was in his first group home.

And now she’s discovered his second major tooth problem — and even with pushing and prodding they assured us they wouldn’t risk an unnecessary anesthesia.

(For the record, I believe she was wrong once, and that was with a concern she brought up and let go after talking with the doctor for a while about it)

And the “residential specialist” whom we tried to get to help us push for Alex’s rights just stood by with a condescending smugness that very clearly told us what he thought about a stay-at-home mom diagnosing major dental problems.

I’m thoroughly disgusted with all parties involved except my wife’s. She has once again proven to be the only person willing to actually work to get Alex the help he quite obviously needed.

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.

We saw Alex this weekend, and it was by far our best visit ever. He’s happier than he’s been in a very long time. He only had one really serious meltdown, and it lasted only about ten minutes or so. And to be fair, it was my fault for trying to take him on a carousel ride “one more time” when I should have known better. Alex had been signing “more” for the carousel ride after two relatively fun rides, and so I took him on a third time, even though I knew he sometimes gets overstimulated. Even though he wants something, he may not really enjoy it if he gets too much. So not only did I ignore my usual cautionary response, but I even chose to be a little risky — instead of sitting him on my lap in the wagon, I hoisted him up on the horse, where he hadn’t had as much fun the prior day.

He completely freaked out, and they almost stopped the ride for him, but for my “no, no, he’ll be happy again soon’ comments. I was stupid, no doubt about it. He just had such a good visit that I was sure it was a temporary thing.

After hitting himself pretty badly for a while, and even biting me once, we got him to the car and the ride calmed him down very fast. So it was a bit rough, but definitely could have been a lot worse.

So a few key points here:

• We haven’t been able to get him in a car since we dropped him off at the foster care facility a few months ago, and that time we gave him his last little bit of hash to get him through the ride. This weekend’s car ride was not only safe, but incredibly happy. He loved it!
• We spent probably four or five hours with Alex over both days this weekend, and only ten minutes of that time was bad.
• Alex got to see his grandmother and brother for the first time since he left.
• Alex’s brother had a truly amazing time:
  • After Alex left us in February, his brother told us he was afraid of Alex, hated Alex, never wanted to see Alex again, hoped Alex was never happy again, and was glad we had “banished” Alex from the house.
  • During this visit, they played with each other a bit, and even hugged at one point. Alex’s brother said he had a lot of fun. He asked us at one point why he was feeling better about seeing Alex. In the mind of a five-year-old, Alex’s rage must have been terrifying. But today and yesterday, our two boys were able to be happy around each other again. To our younger son, it was so different that he didn’t understand it — but still enjoyed it!

All in all, an incredible trip. This one, like the last, ended in tears — but this time it was because we wished we could keep Alex happy like that all the time. If we could, he could come home.

The bad news

My wife talked with some people who represent kids and adults in situations like Alex’s. They told us it’s very unlikely they’ll get involved in our situation, as the federal laws are all but impossible to work around. Even though the state says marijuana is legal for somebody in an extreme situation like Alex’s, the federal government refuses to even admit that it has any legitimate medical use, period.

Additionally, Alex is now on some of the medicine we wanted to take him off of, including Risperdal and Ativan. I don’t like the side-effects of either medication, and I can’t find anything about their long-term effects on a developing brain. Marijuana is “too risky” because it’s got unknown risks. I’m betting that his current medications have equally unknown risks, but they’re not risky? I call BS on this particular marijuana myth.

The light at the end of the tunnel

In two weeks, I’ll be within an hour of Alex. It’s not the best situation, but I’ll be close enough to visit him more than once or twice a month. In fact, I’ll be able to squeeze in a minimum of one visit a week, and hopefully more like three. I may not be able to get him the best medicine for him (I still believe marijuana is the way to go compared to the stuff he is currently on), but seeing his dad more often will definitely help him immensely.

Within a few months, the rest of the family will move up. We’ll all be able to see Alex almost whenever we want. It’s not the same as having him in our home, but it’s a whole lot closer than today, where we have to drive 200 miles.

Unfortunately, on Saturday we didn’t want to knock him out, so we gave a much smaller dose and didn’t see any real improvement. On Sunday, we didn’t even bother trying the hash. He woke up so happy we were sure he was going to be fine for at least a little while. Within an hour of waking up, he was completely out of control, and we left in tears.

Haldol – dangerous, but it helped

We recently got his new psychologist to stop the Haldol – it’s very dangerous at the high dose he was on, even if it calms him down. Unfortunately, his problems are getting bad again:

Alex continues to have a really hard time. He has been placed in multiple physical restraints to prevent SIB. He has started the new meds that [his psychiatrist] ordered but they have shown no effect as yet. I have called her this AM to keep her updated. She is going to order Tylenol 3 with codeine every 4 hours while awake.

(SIB means “self-injurious behavior”)

We’ve been down this road. His behavior will not be affected by any dose of medication that’s considered safe. I don’t know why, but he’s always needed more medication than most adults. At one of his ER visits, the doctor told us nobody (who hadn’t seen it themselves) would ever believe an adult, let alone a seventy-pound child, could stay awake and fighting with the doses of Haldol and Ativan he’d been given.

We have told them it’s time to try Marinol again, but it’s not available in a pure liquid form, and they’re not allowed to break open the capsules to get the liquid out — apparently the pharmacy is claiming this is a dangerous procedure.

We just don’t know how to help our baby at this point. The solution is right in front of us and we can’t use it. The one medication that’s helped him is hard to get and won’t be administered by a state facility. We don’t even know who to talk to to try and force the issue.

OCTA

It probably won’t happen this year, but if you want to help our cause, we’re trying to get attention on the Oregon Cannabis Tax Act. Read a bit more about how the Oregon Cannabis Tax Act could help kids like Alex.

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.