Alex's Story Autism, rage, marijuana, and heartbreak Sun, 25 Sep 2016 19:02:33 +0000 en-US hourly 1 Yes, I’m definitely done Sun, 25 Sep 2016 19:02:33 +0000 Continue reading ]]> There’s not been a lot to say lately, hence the lack of posts. I just don’t have the time or energy to keep up here. I’ll be shutting down commenting today, though the contact form may remain up for a while since I still get occasional questions from people in tough situations like ours.

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.

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Response to Jim Carrey’s use of Alex’s picture Thu, 02 Jul 2015 18:22:49 +0000 Continue reading ]]> Statement by Karen and Jeremy about misuse of Alex’s picture:

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.

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Quick update – Alex has oils again! Wed, 15 Apr 2015 02:23:40 +0000 Continue reading ]]> We got Alex’s OMMP card recently, and we now have a donor (TJ’s Organic Gardens), so we’re able to give Alex a blend of high-CBD and high-THC oils, mixed to whatever ratio we think will work best. We’re not sure how much he needs or what ratio, so it’s still a bit of a guessing game (TJ’s has been giving us pointers), but we’re back to being able to dose him again, which is obviously very important. And we can dose him TWICE a day since he’s so close to us. In practice, we’ll probably miss a dose here and there, which sucks, but so far we’ve hit a lot more two-dose days than not.

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)

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Why 2015 could be Alex’s best year Thu, 08 Jan 2015 06:49:14 +0000 Continue reading ]]> I touched a little on it recently, but Alex’s new home’s upper management seem to be significantly more concerned about doing what’s best for Alex than his last home. This is just one of many reasons I’m thinking this year could be the first one where things really start looking up.

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.

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Post-KKI Alex Tue, 30 Dec 2014 18:14:49 +0000 Continue reading ]]> [ I apologize for the lack of contact, I'm actually at work right now delaying my "clock-in" time, so to speak, in order to write something up - it's been a crazy, crazy couple of 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.

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Vote yes on Oregon measure 91 Sun, 10 Aug 2014 21:43:04 +0000 Continue reading ]]> Alex visits are extremely draining when he’s almost three hours away (round trip). As such, I won’t be posting a lot about him unless there are major changes. But I figured our ballot measure is worth at least a quick mention.

A few weeks ago, New Approach Oregon got their cannabis legalization initiative on the ballot. It will be measure 91 on the ballot in November.

If you live in Oregon, register to vote – it’s insanely easy, and our voting is by mail, which is so much better than states that require in-person voting. There’s no excuse not to vote. But REGISTER now.

Measure 91 isn’t perfect by any means. I have concerns about the four-plant limit, the fact that we still allow employers to drug test for off-the-job cannabis usage, etc. But it’s a HUGE step in the right direction. It won’t touch anything in the current OMMP laws, so medical patients are still completely protected with the same high limits they have today (I think 6 mature plants and 12 seedlings or something — and 24 ounces of usable plant matter). Taxes will go to police and schools primarily, which should alleviate the fears of the naysayers who somehow still think it’ll cost a lot to enforce the new laws. The tax level isn’t a set amount, so it can change as the black market changes and as other states legalize, keeping our system competitive with the black market while minimizing potential interstate trade.

It’s a good measure. Maybe it’ll need work in 5-10 years, but for today, it’s a good measure. We believe it’s a step in the right direction for kids like Alex. Getting cannabis for him should be a lot easier, and in the long run, a lot cheaper than it is today. For others in situations like ours, they can try it out before it’s too late, and have time to experiment with dosage and strains. I urge everybody to vote yes – whether it’s because you value freedom, believe in helping children like Alex, or just want to see Oregon’s schools get a bit more money.

I’ve discussed the cons of prohibition so many times it’s not worth repeating old myths, but check out the facts of cannabis prohibition if you want a brief refresher. There are too many arguments and counter-arguments out there for me to cover them all, so do your own research and I guarantee you’ll come to the conclusion that a vote of “yes” is logical and the right thing to do.

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Alex returns!! Wed, 02 Jul 2014 02:30:26 +0000 Continue reading ]]> This is a bit delayed, but we finally got Alex out of KKI and back to Oregon! He won’t be getting back on OMMP any time soon as his new home is over 90 minutes away from us, making daily administration impossible. For the moment, though, this is a good thing, as odd as that might sound….

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.

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Alex is cannabis-free in Baltimore Fri, 27 Dec 2013 05:43:58 +0000 Continue reading ]]> Well, after a lot of fighting we got Alex to the Kennedy Krieger Institute. It was a ridiculous battle, and shame on Providence for trying to deny somebody as obviously in need as Alex. Their initial denial was flimsy at best, claiming various administrative errors. We appealed and they denied with much more coherent (but still ridiculous) reasons.

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.

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Updates – KKI, hash oil, and general news Tue, 06 Aug 2013 03:25:19 +0000 Continue reading ]]> I’d like to say first and foremost that we wanted to thank all of our supporters. in the past few months, even with very few updates from us, we have received tons of emails and Facebook messages supporting us and our cause. The responses and emails about my recent blog post, “I think I’m done”, have been extraordinary. To answer the most common concern I’ve seen: no, we’re not giving up on cannabis — we’re just not writing updates as often.

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.

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I think I’m done Thu, 18 Apr 2013 04:34:39 +0000 Continue reading ]]> After stating the blog would go on, I haven’t touched it.

Partly I don’t feel like putting up more because I’m satisfied that Alex’s story was able to really be told. Partly I feel like the updates aren’t helpful since it’s just repetitive information – Alex is happy, now he’s unhappy, now he’s happy, and so forth.

But honestly, a lot of why I’m done has to do with Alex’s situation just not being one that makes for good updates.

The tincture hasn’t helped him very much since the brain surgery in late January. When it does help it’s only a little bit. We aren’t sure why. Many of his best days recently have been completely unmedicated, in fact. Since the surgery, his mood has been a bit better overall (though the initial all-happy-all-the-time situation didn’t stick around), but whether he’s happy or not, cannabis just hasn’t been doing much for him recently. This makes it tough to want to post any updates because … what do we say? On a good day without medication, it’s great to share, but it has nothing to do with our main struggle. On a bad day where he was medicated, I don’t want to share anything. I could say a lot about Saturday’s visit, but it was a really sad visit, and the tincture did nothing.

What’s worse is that we got a high-CBD oil donated from a local follower of Alex’s story (he said to refer to him as “Genesis”). We were very hopeful at first, but after giving it to Alex on two separate occasions, he was visibly uncomfortable and even unhappy. We gave it a minimum of two and a half hours both times and the results were basically the same: Alex was worse off after the dose than before. Since those doses we have only given it once more, and a very small amount (and it still didn’t seem to have any effect).

I feel like his story has done the best we could have hoped. We opened a few eyes to the fact that cannabis needs WAY more research. Children like Alex can be helped, but it’s almost impossible when it’s such a huge guessing game and the medical laws make it so absurdly difficult to try out different strains and get a regular dose figured out. Prohibition hurts children in his situation, and while cannabis clearly isn’t an easy cure-all, it’s got the most potential for helping deal with rage and pain.

I more or less said this during my interview with Russ Belville. I feel like there’s a strain and/or method of dosing that could work wonders for Alex, but I don’t really have much faith anymore that we’ll find it.

Alex’s story doesn’t have a happy ending right now, and I just don’t want to keep saying the same things over and over again about our inability to figure out what’s right for the kid, and generally my feeling that I failed him, that I wasn’t strong enough to keep him home or smart enough to figure out how to fix the situation. People have asked why we feel the need to defend our very personal and painful decision to place Alex outside the home. Why do we feel that we have to justify it? Because we have to remind ourselves that it was for the best. Because some days we just feel like shitty parents. Because a part of me will always believe that what we did was unfathomable, cruel, unfair, and inhuman.

We’ll keep doing the best we can, and we’ll keep trying different strains and dosing and delivery methods. I might come back to post very significant changes or particularly important activism information. Who knows, maybe one day the story will have a happy ending. But for now, I just need to focus on my family and not worry about telling the story.

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