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.

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.”

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.

In June, we saw the home and were only concerned about one issue: the front door is always unlocked. It has an alarm, but all that does is let people know after the fact that Alex is in the process of leaving. We asked for some kind of lock to be added in order to keep Alex safe since he will sometimes behave very unpredictably. We were told getting that changed shouldn’t be a problem, given Alex’s situation.

We also mentioned that to move anywhere, Alex really needed to have 2:1 staffing because when he gets into his behaviors, they can be extremely intense. There is plenty of documentation that supports this at his existing home. Even during a good month, he’ll have plenty of reports about needing to be restrained to stop from hurting himself. We were told that with Alex’s situation, it seemed likely they could get the staffing approved.

His move-in date was scheduled for Saturday, August 6th. The prior Monday (the first of the month), we actually sat down to fill in all the necessary paperwork. Half way through the process, we were informed that the staffing was only going to be 1:1 even with Alex’s behaviors. We were none too happy with this, but agreed the location and house manager were so good it was at least worth a try. We asked about the door lock situation, and were told they still didn’t have an answer, but there was no reason to believe they couldn’t get a lock.

Friday the 5th around 3:30pm, we got a call telling us the lock was not approved.

We had less than 24 hours’ notice before Alex was scheduled to be moved.

We were able to get his current home to agree to take him back in the event that things didn’t work out, and with the help of the residential specialist were able to get the situation set up as a more “trial” type of move so we could see if the house would somehow work even without these two very important things being dealt with.

So we went up on Saturday to help Alex settle in, and were concerned immediately. The 1:1 staffing was just not anywhere near enough – if we hadn’t been there, I’m not sure how they would have kept him safe. We visited twice on Saturday and then returned Sunday morning. Thinking we would just need to get used to the transition, we were shocked to find that the staff can disable the front-door alarm. We walked into the home and the alarm was off, which just blew us away. When we found that the house manager wasn’t there, it dawned on us that this means a staff member can just choose not to have an alarm if they get tired of the noise or something.

Alex was back in his old home by the following Wednesday, and while we hate the location, we are much happier knowing he’s not going to just disappear one day. The agency involved is very unhappy with us, and I get it: they had to spend a lot of money and secure state funding for Alex to move in. But if they really wanted it to work, they should have been honest with us from the beginning. Waiting until the last minute to tell us they couldn’t fulfill either of our basic concerns was their choice, not ours.

The only bad thing about being supported in a difficult situation is that you have to face that situation. I had completely forgotten about the picture of Alex just before we had to say goodbye to him.

This is Alex just before we had to give him away. I can’t remember exactly, but I believe this image was taken just a week or so before placement by my sister. My family came up to visit us and help us through what has easily been the toughest thing we ever had to do: remove Alex from our home. The picture was taken of Alex when he was medically sedated. That’s a fancy way of saying the ER didn’t know how else to deal with his rage, so they pumped in a bunch of Ativan and Haldol until he slept.

Maybe it’s just because I had forgotten about it, but to me this is a more powerful picture than anything else I have. It’s our sweet little boy just lying there calmly, the battle with himself evident on his torn-up face. He’s an angel, resting finally after a long struggle with something none of us can fully understand. He’s at peace.

It wasn’t much longer before we took him to a foster home where he stayed about a week before being placed in the state crisis center. I remember the ride. He was given the last of our hash, and he was so happy to be in the car on a long ride. I felt awful. We were, in my mind, abandoning him. Everything changed in those precious few moments, and this picture is just a reminder of our beloved son just before we made the most painful change we had ever done.

Neither his mother nor myself can look at the picture without an overwhelming feeling of sadness and despair. This is an image that means so much to us — one of the last memories of Alex in our everyday life. In our home.

Alex is doing pretty well, he really is, but this reminder of what we’ve lost still hits us as hard as ever. Some days I wake up for work and have to remind myself that while the job itself doesn’t really matter, the pay and benefits do. Alex has good health insurance so long as I get out of bed and do my job. I can afford to spend money on gas to visit Alex — if I stop wallowing in self-pity and get to work.

Some days are still a struggle for my wife and myself. Even though we didn’t mean for support to come our way today, it’s a good reminder that we’re working to help Alex, and at the end of the day, that’s a good thing to have done.

I don’t really buy it, given the difficulties we’ve had getting the same thing accomplished in the past — there’s a reason we used to have to put Alex through hell to drive to Portland, and it wasn’t just because we loved the screaming and hitting during the drive.

But it doesn’t matter whether I believe their claims or not. Our options are either to take Alex back home and get on a Portland waiting list (which may never amount to anything) or let them move him. There are just too many crisis kids for Alex to remain in the crisis center. Somehow I doubt any are at Alex current level of instability and danger to himself, but again, what I believe doesn’t really matter.

Apparently the state is more concerned with how much time Alex has spent at the crisis center than actually getting him stabilized. I guess what’s more convenient for the state has always outweighed Alex’s needs, so this shouldn’t be particularly surprising. Still makes me angry.

There’s just not much else to say. I’ve gone through many holidays without Alex around now, but Christmas was obviously going to be incredibly tough. Now, with this…. He’s no longer drifting away from us, he’s being ripped away. We won’t be able to see him more than once a week. I knew it would happen eventually, but at least I thought he’d be close to good medical care.

Alex’s visits have been rough in the past, and we’ve never really seen any stability there. But I’ve noticed a trend recently that’s really rather depressing, though not terribly surprising.

Early on, Alex hated it when we left, especially back when we still lived far away and were visiting once every two to four weeks. It was heartbreaking. More than once he tried to follow us out when we left. We were so sad to see his reaction: ecstatic to see us, and then devastated when we left. I am likely misremembering the frequency of this kind of situation, but I do know it happened at least once for sure, and it feels like it was many of the first visits.

Tonight confirmed what I’d been seeing recently, though, which is basically a shift in Alex’s perception of “home”. He no longer feels that where we live is a place he belongs. Some visits, he seems glad to leave or glad to see us leave (if we’ve gone to his facility). Friday, in fact, the staff mentioned Alex had been having a wonderful day, but when I arrived he shifted into a very moody and raging little boy, and seemed only to want to be around the staff member who was currently caring for him.

Tonight’s situation was a bit more definite in my mind. Alex was dropped off for a home visit, and after about five minutes of happiness (not even enough time for a few nice snapshots) and twenty minutes of calm-but-unhappy, he started pulling us to the door and giving us his shoes. This generally means he wants to go somewhere, and so I decided to ask him what he wanted. He understands a lot of words, he just can’t speak them himself. I asked him, “Alex, do you want to go back home now?” He got visibly excited and pulled me again to the door. I had my wife call the staff members to come and pick him up, and he left after spending less than an hour with us. And most of that time he was clearly very anxious. When the van arrived to pick him up, he was significantly calmer, and didn’t care to wait for my wife to give him a proper goodbye – he jumped into the van and waited for them to leave.

The fact that “home” means to him the place that he eats and sleeps isn’t really what got me — obviously that will happen, because for all intents and purposes that is his home. What’s sad is that he seems to feel more comfortable away from us now. On Friday he didn’t want to be around me. Tonight, when he kept pulling me to the door, I told him I’d like him to stay for a while longer, I wanted to spend some time with him. He actually hugged me for a bit and then pulled me back to the door. I usually hug him just before he leaves, so I can only assume he was saying “good bye” in the way he knew best. I honestly can’t remember him ever initiating a hug before tonight, so it’s tough to see it as any kind of coincidence. He just wanted to let me know it was time for him to go.

I just feel like I’m losing him, and there’s nothing I can do about it.

After that, I visited him the following Tuesday and he had an amazing time. Then Thursday we had him come home to see us, and it went really poorly at first. So much so that we called them to pick him up about an hour into the visit. He calmed down and got happy again on and off, but overall that was his worst home visit. Then Sunday the 11th, we had a really good visit at home with Alex.

The inconsistency is always concerning, even though he’s showing us happiness. When he has physical pains, such as when he had his staph infection, he behaves erratically — it’s like sometimes he can get his mind off the trouble, sometimes it’s just bothering him too much. So we’ll have to keep an extra close watch on him and try to figure out if there’s something going on that we can see.

The tougher times have proven good for reflecting on our decision.

Sometimes I beat myself up for not being able to care for Alex. My wife is the same. Sometimes it’s hard to accept that the situation was really so bad that we had to give up our son’s day-to-day care. There is always going to be a selfish side of me that looks at the situation and says, “life is so much easier now.”

I sleep 7 hours or more every single night, where I used to sleep erratically to deal with various problems with Alex’s sleep patterns – every month or two I’d have to go to work on no sleep at all. I have real free time where I can do anything I want. Our financial situation, once we’re all settled in at our new place, is going to be significantly better than it was before, even with the pay cut I took to move closer to Alex.

It’s hard not to think that perhaps my selfishness helped me to make the decision to “get rid” of Alex.

It’s good to keep in mind the real reasons behind Alex having to leave us. His recent behaviors are a good reminder that we didn’t just get lazy and selfish and toss aside our little boy. We were completely burned out, and we weren’t even able to provide him with a good home. During his crisis (late last year through February), we were robots doing a job. The attention he got from us was rarely very positive, because we were just exhausted all day, every day. We showed him love, of course, but it was always tempered with the constant worry of how we would get through another day. I was at a job I hated during the day and getting very little sleep at night. My wife wasn’t able to keep Alex safe at home, and even with respite often had to either keep him immobilized or watch him beat himself bloody. Rarely mentioned and possibly most important of all, our other son never got any attention. There were times he was trying to engage us and literally moved out of our path so we could respond to Alex’s latest behavior. I can’t stress enough how much different it was for our youngest, and how much he had to adapt to deal with being alone most of the time.

I hate to see Alex unhappy at all, but looking back, he’s doing so much better having constant attention from people who get regular shifts, breaks, etc. And every time we visit him, he gets completely positive attention. We hug him, play with him, take him out for fast-food treats, and so on. The people he sees today are completely different from who we were when he lived with us.

It’s important to remind myself every now and then that the decision was necessary and better for him, not just us. There’s nothing wrong with my realization that I have an easier time, because that translates into a better family at home, and a much happier time with Alex when I see him, which has happened three or four times every week since I moved.