What’s the problem? Why can’t Alex just come home so we can figure this out?

With the recent surge in traffic I’ve seen variations of these questions posted as comments as well as asked directly. Some people think that if cannabis works to calm Alex, then we have no good reason to not take Alex home and just dose him ourselves. Back when Alex was first moved from Salem, one woman suggested, directly to my face, that if we cared enough, we wouldn’t keep Alex in a group home, and that we didn’t have any right to complain because we had made our choice.

I should note that some of the confusion may be due to the Treating Yourself article — as in any article trying to get a lot of information across in a concise way, there are a lot of details left out, and some elements are slightly changed to simplify the explanation of the situation. The article is a great way to expose people to the damaging effects of prohibition, but it does gloss over some details that can make our plight seem confusing.

Unfortunately, the story is a lot more complicated than it seems at a glance. I tend to sound like I’m saying, “cannabis is Alex’s miracle drug”, when I really mean that it is his best option, and probably better for his situation than any drug available. Cannabis is an amazing substance. But Alex’s situation is extreme:

  • We know cannabis helps, but we couldn’t get consistent results in the past. While we believe 100% that we can help Alex a great deal with cannabis, we do not currently believe that it would manage his rage to the degree necessary for us to care for him full-time.
  • We still don’t know the best way to dose, the best strains, etc., and we get a lot of conflicting information when we look things up or people offer advice.
  • When Alex’s moods are particularly bad, he doesn’t eat anything. We couldn’t get medibles down him more than a few times (and the brownies we made tasted pretty good to those who sampled them).
    • We have a lot better luck with raw hash, but he still gets into moods where he’ll refuse to eat it.

There are logistics problems as well. If we take Alex out of state care, getting him back in, if that proves necessary, will be very difficult. Previously Alex’s condition was absolutely terrible – the videos posted are a very representative sample of how he behaved nearly every day for the two or three months prior to placement. For about two weeks he barely ate, slept perhaps two hours a night, and on three or four occasions needed chemical sedation in the ER (massive Ativan and Haldol doses). Even in this condition, it took the state something like three weeks to find a placement for Alex — and that was “rushing” things. If we took him back home and then six months later said he needed to be back in their care, it’s not likely we’d get him placed in less than a month. During that wait, it’s unlikely that I could work even part-time.

We also have accepted that Alex could not be with us forever. Even during his happy times, he can be very dangerous. He has phases where he’s happy, but wants to watch “interesting” reactions from people. He will get these reactions by scratching or pinching, and sometimes pushing, hitting, or even head-butting. I believe he’s trying to be playful and just doesn’t know his own strength, but the fact is that he’s still going to be dangerous at times.

We have to consider Alex’s brother and sister as well. When Alex was with us, his younger brother was literally neglected at times. He and I rarely spent time together. I was taking care of Alex from the time I got home until the next morning when I went to work. On weekends, if I had free time, it was because my wife was watching Alex for a while so I could get a break. That was hardly “quality time” with my other boy. Respite care went primarily to my wife since she had Alex and his brother alone all day long. Our trip to Disneyland last year was wonderful for Alex’s brother. It was his first vacation that included me. It was the first time we really did something big where he was the center of attention. That trip absolutely could not have happened with Alex in our home unless cannabis were to completely reverse his anxiety and rage 100% of the time.

We have to consider the longer-term implications of every decision we make. I have now got a stable job with union protection at the university. My children can attend college for a fraction of the normal tuition when they’re ready. I have decent health care which gives Alex far better options than if he’s solely on the Oregon Health Plan. I have generous vacation and sick time, which only gets better the longer I stay, allowing me to spend more time with my family. I have a decent pension plan so I don’t have to add “how will I retire?” to my list of stressful concerns.

Stress in general is also an important factor. My wife and I still grieve over the “loss” of Alex. We still have a lot of stress trying to be sure he’s getting the care he needs, and seeing his bad days. But it is nothing like it was during our crisis period. We were nearly incapable of doing anything that wasn’t directly related to Alex’s care. Sleep was uncertain, and probably 3 times a month, he would force an all-nighter out of me, even when he was having good days.

It’s not that we don’t think cannabis will help, it’s that we don’t believe it will help enough. Alex isn’t an autistic child with appetite problems. He isn’t a child with severe seizures but who is otherwise okay. His rage is the main problem, and very few professionals we’ve dealt with have ever seen a child so severe. Cannabis could help him immensely, but we aren’t convinced that it would stop the rage episodes, and our actual experiences using cannabis to treat him make it tough to believe otherwise.

When dosing is just perfect, he will be insanely calm and happy… for a few hours. In the videos of his happy days, we had amazing results, but they didn’t last all day. The mornings were horrific, until the medicine kicked in. After the medicine wore off, he would start in again with rage. If we dosed him again, results were unpredictable. He might calm down and sleep, but sometimes the rage would still break through. When he did calm enough to sleep, it was sometimes too early, so he would wake up at 3am. On waking up, he was in a rage episode again, and if we dosed just perfectly, we still had about an hour of intense rage before he would calm down again.

When asked why we don’t just bring Alex home, I try not to react defensively, but it’s hard. We question our decision all the time. When things are bad, we end up questioning our value, our love for our child, wondering why we can’t be better people, wondering what made us so weak that our love for Alex can’t overcome the challenges of caring for him, wondering how we could be so selfish as to let Alex pay for our shortcomings. There have been times even in the past week that we’ve had to look at the list of “whys” to remind ourselves that we didn’t make a terrible mistake.

Intellectually we know we have made the right decision, but emotionally… it’s a constant battle. When the question comes up, it’s a tough one to answer without wanting to lash out and say, “you try it sometime, and let us know how it goes.”

15 thoughts on “What’s the problem? Why can’t Alex just come home so we can figure this out?”

  1. Hi – I pop in to check on your posts/website from time to time, but have never commented before. I found your wife’s blog about two years ago (I can’t remember how exactly) and started following her. She may remember me, I asked about her camera and other questions, primarily regarding how the two of you maintained any type of relationship (and I don’t mean physical) considering the extreme circumstances Alex’s care required. In any event, one day her blog was inaccessible to me and that was that. However, I’ve continued to think about all of you from time to time and I check in here, but I’ve never commented or posted previously.

    Mostly, I wanted to pass along my congratulations on your healthy new baby. A girl, how wonderful. 🙂 I also wanted you to know that you’re not alone in your “you try it sometime and let us know how it goes” position. People are so judgmental. On a good day, I think “F ’em.” On a bad day, it crushes me to tears. They have no idea. Lastly, I was thinking of all of you yesterday when I heard about an experimental nasal spray (I think?) out of France that removed “the high” of cannabis but still delivered its other therapeutic properties. Maybe you’ve already heard of it. I was wondering if something like this would be an option for Alex, but from this post it doesn’t seem that having him inhale the nasal spray would be optimal.

    Well, if it helps at all, there is someone who thinks of all of you from time to time and is sending good thoughts your way. The best to all of you, Kim

    1. We have heard of the spray – I think you’re talking about Sativex. It’s something I’ve heard mixed reviews on, but as of yet the FDA hasn’t approved it. I believe it isolates THC and CBD (CBD is the one they’re now saying keeps the high of THC from being too intense), but doesn’t give any of the other chemicals in cannabis to the patient. I would definitely try it for Alex, but until the FDA approves it here, it won’t matter.

      I’m also not expecting that it will do much for him, because it just feels like Marinol all over again. With Marinol, they synthesized the THC, but avoided all the other “dangerous” cannabinoids. Well, it turns out that pure THC gives people a really freaky high, but doesn’t have a lot of benefit compared to the real plant. I believe that adding in CBD will help, so Sativex will be a better choice, but I doubt those two cannabinoids are all that matter.

      Anyway, thanks for the suggestion, and more importantly, your support.

      1. She is a most interesting plant indeed. No man can resist her oily flowers and protein-rich seed. Only enough can he munch before staggering away, lost, for his nap after lunch. For her, he brought pollen. For him, she bears seed.

        Sativex (Nabiximols) is an extraction of all 400+ chemicals from two different kinds of whole marijuana plant. One is high in THC (skunk), the other is high in CBD. You get 2.7 mg THC and 2.5 mg CBD from each spray.

        Sativex’s better than eating it but inferior to smoking or vaping and it contains alcohol which is an insult to some.

  2. I know first hand how hard it is to get to the decision of having your child in a home, all the doubts and fears that go along with it, and support you and your family. It is never an easy decision, but you have to do what is best for EVERYONE in your family as well as insure that their basic needs of safety and security are met. Other people don’t understand just how scary the rages can get, the damage that can be done, or the lack of control the child can have when you are struggling to find that balance. These aren’t learned behaviors, this isn’t just willful violence and destruction, you aren’t just shoving him into some home to forget about him, and you are not bad parents for doing what is best for ALL of you. I have no doubts that if there was a way to balance out and treat your child’s rage, without putting him in a medication coma, that you and your family would bring him back home with open arms.

    P.S. I HAVE told people, especially my extended family, that I would LOVE to see them try to manage 3 special needs kids with all the meltdowns, destruction, fear, and lack of sleep due to all of the above. It is amazing how fast it becomes quiet after that….

  3. Nobody should ever judge your family for placing your son. This is a situation most people have no idea even exists. The story you shared about waiting 3 hours to get medical help for your son is outrageous and sadly, not uncommon. Autistic children with severe self injurious behaviors are in a constant crisis situation. Each time the self abuse it’s a potential medical and behavioral emergency that requires prompt and effective treatment. Dear Lord, what does it take for professionals to understand this? Also, anti psychotics are a proven ineffective therapeutic intervention for serious repetitive SIB. MMJ is a much better alternative for a rescue med or even temporary maintenance medication. Prayers and hugs and love. Be strong. Your family needs a break. Don’t feel guilty. You are doing the best you can right now given extraordinary circumstances. Use this time your son is in placement to refresh yourselves and get him the medical treatment he needs. The group home staff should be accompanying you to any and all necessary medical appointments. DEMAND a full medical work up to rule out underlying and undetected medical issues tormenting your dear son.

  4. The best strains for this type of situation would be, according to research, strains that are Indica based. Or hybirds. NOT straight sativas or anything high in THC. Also look for strains that are reviewed as “clear head” avoid all strains where people report “couch lock” or “head high”. You want strains that are a body high to calm the body from all the stress and pain. Medical based cannabis. Not the kind stoners use to get themselves high.

  5. I simply have not lived a life that could have put me in your situation, so it is “easy” to say, and feel, that I would have responded differently.

    Obviously, however, if I were in exactly the same situation I would not be me, and my feelings would not be relevant, I would do the exact same thing if I were the same exact you. If I were put in your situation, I might try a few things you did not, but I have occasionally had third hand access to a growing room in the past too, and know far more about medical marijuana, brains, and minds, than most people who do not NEED to.

    “wondering how we could be so selfish as to let Alex pay for our shortcomings.”

    Everyone lets everyone else pay for their shortcomings. The only ones who deserve any censure or blame are those who know but don’t care.

    (Vaporizing would be faster acting, but would require distinct cooperation – if you had the money to fill the room with vapor all the time you would not be having such problems. Maybe by putting it in balloons to make it more fun for him???… I think I heard some newer versions of vaporizers have a fan or other way of pushing with air pressure. Personally, and I am not alone in this, I find vapor ineffective. It is often described as more of a mind high without the body buzz. I feel similar, but opposite, results from smoking what is left after vaporization. Neither makes me feel the pleasure/happiness of being really high. This understanding runs counter to my long held belief that I prefer the more cerebral high.)

    Using a vaporizer, and also feeding the un-vaporized results, at separate times, would also be a good start on looking at the THC VS other cannabinoids, if Marinol were not available.

    I think the guy who recommended oil is spot on. Oil can also be absorbed through the skin, or, preferably, mucous membranes. Experimenting with placing it on his temples, carotid, in nose, et cetera, may well offer the best possible solution. This would not be as fast acting as vapor or smoke but would act faster than eating. More importantly, you could keep him at a fairly constant dose, and would need very little cooperation.

    Efficacy of either the vapor or oil strategy, of course, depends a lot on which cannabinoid(s) is the active principle(s).

  6. I have absolutely no ideas to offer. I just wanted to tell you that your son and family are in my prayers. When I look at the pictures at the top of the website of Alex smiling and the other crying I just cry too. He’s a beautiful little boy that is suffering. You and your wife are suffering right along with him. You are trying everything in your power just to get some relief for your son. I commend you for that. I’m sure he has to be in the facility not only for the safety of you and the other children but for Alex. When he’s hitting himself or hitting his head against the wall or floor he needs to be restrained to keep from really hurting himself in a structured environment. Something that is practically impossible to do in a family home. And last but not least thank you for being the parents Alex needs. I see you doing what’s right for him, not just what’s right for youself.

  7. We started with edibles, but they were a lot of hassle for a daily medication. We found that a homemade tincture was the best delivery system. It is dosed in hot water, so the alcohol is instantly evaporated out. Then we brew a teabag, add sugar or honey, and lime, serve over ice. It took a few tries to get the strength of the tincture just right, but once it is made, we have a two month supply of daily medication.

    1. I would like to know how to do this. Did you buy or make your tincture. Did you make your own tea bags? Did you use dried or fresh leaves? Did you use more than leaves? What species did you use?

  8. i just want to reiterate my support for you all. it’s easy for those who’ve only been exposed to healthy children to judge. (when seeking medication from a local dr to help my child calm down, he actually said: ‘we all make choices…’ and wouldn’t prescribe anything more than an ineffectual sleeping pill. i can’t imagine what ‘choice’ he was referring to, but clearly he was judging more than helping. luckily it was evident to Doernbechers the necessity for prescribing PRNs.) unfortunately, we live in a state where budgetary concerns are more important than providing support to families with disabled children, which leaves us in an all or nothing solution to caring for out loved ones.

  9. You don’t have to explain to the world how your world is, and there are few that get it until they walk in your shoes. My son has self injurious behaviors much like your Alex’s behaviors. The lack of sleep, the refusal to eat, etc.. People have had many ask if I have a job ( outside of the home). It shocks me, they would consider I could work but then they do not know the day in and day out of this. If you had Alex at home you would need to have 24/7 staff, maybe two at one time on rough days. But you cannot do it without help! I am sure your tired of the endless ideas of things to do or try. Because my son is so much like your Alex, the wrapping in blankets. My ASD son also has mitochondria issues, easily treated with a vitamin cocktail ( the B complex vitamins helped him a lot too) Methylation problems, and maybe PANDAS – which relates to Strep that gets in the brain. These are some ideas of things to test for if its possible, as it may also shed some more light on the SIBS/Rages. Best to you and your family. Praying for Peace for Alex.

  10. any amount thru vapor would be fine google strains and they say what they do but they all seem to do the same thing as long as they are not just bad weed. the lethal amount of weed for an adult is 1500 Lbs in 15 mins to be deadly so im not sure if i has to fall on you (only way i can see it kill you) or if you explode from inhaling that much smoke? repeat every 2-4 hrs or as needed the food stuff is hard to get a good read on because it can very and you have to take what you eat with vapor you can stop when you are a negative creep (normal)

    also if you grew your own (seeds from nirvanashop(dot)com) you could be sure it was chemical free and you could make salads with the fan leaves if he eats salad (ranch for the win).

    get a single use pipe called one hitter to see how much to use in the vaporizer

  11. I just wanted to leave a comment with encouragement. First off I have a younger brother, Eddie who has autism and up until he was 12 he lived with us. He also has rage, but instead of SIB he lashes out on the people around him, mainly those closest to him. It got to the point where he could take down my 6’4 father with little effort and it was a daily event. It put nothing but stress on everyone and even when he was in a good mood my family was just so stressed we fought anyhow. When we announced to my family he was going to move into a group home we got mixed reactions. What was worse was the reactions from people who didn’t understand the situation and thought we didn’t love or care for him. So I know on some level how you feel about the whole thing. I miss waking up and Eddie being there watching his cartoons or being there to talking with (even though he has limited speech abilities). Even though he’s 20 almost 21 now it still gets to me now and then that he’s moved out, even though I see him multiple times a week. Its hard and many people don’t understand, which is extremely frustrating and sadly some just never will.

    The other thing I wanted to say is you’ve changed my mind on medical marijuana/cannabis in 30 minutes and I’m amazed. Whenever I hear about using this substance for medical purposes I always just think of my stoner friends who want it legal for the constant high they already always get. I’ve seen how this took over their lives and now most of them are ruining their futures. I found your site on a facebook support group where someone simply asked for opinions on cannabis for children with autism. At first I said, “hell no!” in my head, but I kept reading. Upon reading your website was posted and I did some more research into it and found that there’s all different kinds of things that go into cannabis and it can be used for better things than just what my friends use it for. I know if something like this worked for Eddie I would back him 100% on it. Even if it helped a little. Thank you for opening my eyes to this. I’m currently a senior in college studying special education for moderate to intensive needs students and I feel I need to read more stuff like this or more about things I don’t understand fully to be a successful part of my students lives. So I thank you for that. I back you up 100% and wish you and your family all the best!

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