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.

Initially, Alex went to a “crisis home” in Salem (I think that’s what it was called). It was okay, but they never really got a handle on his behaviors. The state shuffled him off to Creswell before he was stable in our opinion, though we couldn’t fault them really — we, his parents, never did, either. Nor did various doctors, medications, etc.

But the Creswell home is where things went downhill. It seemed like the goal was to figure out the cheapest way to keep Alex alive, as opposed to figuring out how to keep him engaged and keep his mind working.

There were quite a few staff people we really liked there, but somewhere in the hierarchy of management there were a lot of very bad decisions. They wouldn’t train staff, they wouldn’t really work at any kind of communications strategy with Alex, they would fight us on everything, even just trying to set up a daily routine.

Sending Alex to KKI was the best thing that’s happened to him, I believe. Don’t get me wrong, it was a huge ordeal, and way too far to travel for what they did for him (I’m certain if our nation weren’t completely insane, centers like KKI could exist in every state). But they created structure for him, special arm splints to prevent the majority of his injuries, and even managed to reduce his emesis rate by a fair amount. Having a set, enforced structure allowed us to get him in the care of a FAR more effective group home. They train their staff, they don’t just pull people off the street and hope for the best. They listen to our concerns, and work with us when issues arise. And most importantly, they follow Alex’s routine very well. He’s always being directly engaged by people – he isn’t allowed to just be left in his room, watching TV and vomiting on himself out of boredom. (At the time we didn’t know what would help, we just kept trying to press them to do SOMETHING with his mind. Their response was just outright lies – “that never happens, his staff are always with him”)

So to anybody with a similar situation, I’d say FIGHT. If you can’t get something like KKI, at least fight, and fight hard, to get a structure that’s required to be followed (you’ll have to talk to multiple doctors probably, but good ones are out there who will say, yes, this structured system is a good idea). Get doctor’s orders, and bring in lawyers if you have to. (Maybe later I can provide a sample of the kind of structure that works so well for Alex.)

Anyway — the point is that KKI gave Alex the structure he needed to be significantly happier and safer. And now that he’s in a place that will work with us, we managed to get them to open up a home just 10 minutes away from us. Not a day has gone by since the move that he hasn’t seen one or both of his parents.

While Alex transitions to a new home and new staff, it’s critical that his KKI behavior plan is followed very closely so we can see how well it works in a less controlled environment. They have reported a fair amount of behavior reduction, and we want to keep his world as stable as possible for a while to monitor continued improvements, backsliding, etc. Adding in cannabis at this point would be a huge variable that would make quantifying the behavior plan’s success very difficult.

If we had ever managed to figure out precise dosage, the right strain, and other factors for a consistent experience, I might feel differently. But with the unknowns around cannabis and Alex, dosing him right now would just be a wild card he doesn’t need.

That said, once things stabilize, we’re hoping to get him closer to us (or us closer to him, though we swore we’d stop trying to follow him around after having uprooted the family twice already), at which point we will absolutely be pursuing cannabis again. With so much research coming out in favor of medical cannabis, public opinion changing (about time), Oregon finally allowing dispensaries, and more states (including Oregon) looking likely to legalize fully by 2016, I think we would have a significantly easier time than when we first tried it.

Don’t ask us about the plane ride home, though. While the flight out was surprisingly uneventful, the flight back was a nightmare, and I hope the poor kid never has to go on a long trip again.

Their position was that ABA was experimental and therefore not necessary. Not only is that somewhat absurd, it’s also not the only thing KKI does. They have a toolbox filled with possibilities, and while ABA is an important part of their process, it is far from being the only thing.

Providence went on to claim Alex wasn’t going to benefit from the therapy anyway because he’s developmentally delayed, and Providence doesn’t cover developmentally disabled people’s mental health services.

Then they actually tried to claim that Alex’s Tuberous Sclerosis could be to blame for his behaviors, not his autism. I don’t know what kind of back-woods doctor they have on their team, but any decent review of Alex’s medical history would show that no doctor has ever believed that to be a possibility. We had a lot of hope that getting tumors out of his brain might help, but they just aren’t a significant issue in terms of behavior. And even if they were, KKI can look into that further anyway! Repeat after me: KKI isn’t just ABA therapy.

When we saw their statement, we asked to skip the level 2 appeal and jump straight into an expedited independent review. Less than one business day after we submitted our counter-arguments, the independent reviewers overturned Providence’s decision.

If anybody out there has a child with autism who is being denied something important, FIGHT. It almost seems like the denial was just a formality to see if we were serious, because the independent review was so quick to point out how ridiculous Providence’s claims were. Now I’m aware autism therapies are very expensive, but I’m convinced the costs could be lower if kids like Alex could get the help they need before things go to hell. Early intervention as opposed to constantly fighting to deny important treatments.

So leaving Alex a million miles from home is awful. But at least this time we know he’s with very specialized people who exclusively deal with major behaviors like Alex’s. There were a lot of people at Alex’s group home who did an amazing job, but it just didn’t have adequate staffing, and the staff who really cared weren’t given the support they needed to stick around.

Once Alex returns from KKI, he’ll have a doctor-ordered plan that needs to be followed, and per KKI’s suggestion a new group home where everything will be new to him – no falling into old habits or having staff who are used to doing things one way having to be retrained.

Giving up on cannabis, at least for now, is also pretty disappointing, especially for me. I had put so much faith into this little plant, especially after some of our amazing successes. But in the past year or two, it hasn’t done more than give him that “two point boost” I described a while ago. The huge improvements we saw early on have been very difficult to reproduce, and while we usually saw improvements, they weren’t consistent, they weren’t amazing transformations, and they only happened when we could get him to take the medicine – i.e., not every visit, not when he was extremely anxious, not when he was ruminating, etc. KKI can’t help with the cannabis, but what they offer is still incredibly important. They’ll be figuring out how to make him feel more in control and setting up a plan so he always knows what’s going to happen next.

A more pressing issue is why cannabis can’t get the hell off schedule 1. If it were allowed to be prescribed and grown, finding the right strain and getting consistency wouldn’t be so tough, and combining regularly low doses of cannabis with a solid behavior plan would probably do wonders for Alex. So while I am not renewing Alex’s OMMP card, you can bet I’m still watching carefully for who does and doesn’t support reforming our nation’s destructive war on drugs.

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.

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

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).

First, a huge thanks to everybody who has given us support. Maybe we should have set up a Facebook page a while ago (see Alex’s story on Facebook if you haven’t already), because the support there is tremendous, and it’s a bit easier to respond to folks there than on this blog. It also is much rarer for Facebook to crash compared to the server running the blog. Anyway, thanks so much – the support we’ve gotten has been HUGE.

Here are some highlights:

• We’re getting new high-CBD clones tomorrow which should make for much more effective medicine for Alex
• We’re going to be giving RSO (Rick Simpson Oil) another shot, as somebody locally is offering us a donation
• Our facebook page has nearly 2300 “likes”, and so far I believe I’ve seen only one person suggest that cannabis might have concerning side-effects
• Multiple parents in Oregon and elsewhere have asked for advice in case their child needs cannabis – people with similar situations to us, who, like us, never realized cannabis was an option

So on to Alex.

We got up at 5am on Tuesday, waited forever for surgery due to what I’ll politely call “communications issues”, and it was about 2:00pm before Alex entered surgery. We finally got Alex into the PICU around 6:00pm, and he was out of it until around 11:00pm… but from that point on he was awake and trying to smack himself all night long. A combination of factors made that night downright awful: Karen (Mom) had to go back to the hotel to care for our baby girl, the hospital didn’t have a sitter ready that night, and Alex’s group home didn’t have anybody available yet to watch over him. It ended up being up to me to stay with him all night, keeping him safe. I was there until 7:30am mostly alone, other than the night nurse who was kind enough to give me breaks now and again for food and such.

The rest of the week went a lot better. We got a full-time hospital sitter in addition to dedicated, well-rested staff from his group home, ensuring that no single person was going to be exhausted and without breaks. Alex was hating being cooped up, but he got better each day.

Friday we left so grandma could go back home. She had been with us for over a week and a half helping out with Alex’s brother, but she needed to get back home, so we had to cut our visit with Alex a bit short. Honestly, I am glad to have had a chance to rest after such a crazy week, but it’s still tough to leave the kid without his family

So tonight we go back up and spend more time with Alex. Tomorrow he should be leaving the hospital, and we should be coming back home again, but this time with the new plants I mentioned above.

Here’s hoping all goes well and when the new plants are able to be re-cloned and harvested (which is still a long ways away as I understand it), we’ll have a medicine that makes an even bigger difference to Alex!