Author: Dad

Another bad day

Today was definitely a lot different than last weekend. We had to watch Alex beating himself up, bite, scream, and generally have a rough time. And every time it seemed we’d figured out what he needed to be happy, it turned out to be a short-term solution. The shower helped… for about half an hour. Food helped for a few minutes. Water helped for a few minutes.

To be fair, we got about a 50/50 mix of happy and sad today, but we ended with Alex very unhappy. Ending on a bad note means he probably continued to be unhappy after we left, and the fact that he started out so happy makes it feel as though we failed him in some way we just couldn’t manage to figure out. Continue reading “Another bad day”

Two bad visits in a row

Friday the 15th, Alex’s grandmother (my mother), came up to visit the family and got to see Alex at his home, but he was in a fairly bad mood for the whole visit. We only spent an hour there, and he never really got happy during that time.

Today, Alex was driven up to see us, and we were very relieved to see that he was in a great mood. But within about an hour, he was unhappy, and an hour after it started, he was so difficult to manage that we had to cut the visit short and have him driven back home.

We had a great visit on the 13th, and the first hour today was really amazing, but his mood swings lately are really tough, especially with how great he had been doing just a few weeks ago.

Why giving hash early is the right approach

This past Saturday, Alex was driven up to visit us, and most of the visit was great, but there were a few incredible outbursts when we took him for a drive to Arby’s. He was doing so well we figured it would be fun to drive there and get him a little sandwich, and then take him to a playground. But seemingly out of the blue, he turned very violent. He was hitting, biting, headbutting, kicking, and refused to stay in his seatbelt. We started driving back home and he started to calm down some. Seeing this, we decided to risk the trip to the playground, and things went pretty well there for a little bit. He ate his sandwich and was mostly content for a while, but after a bit he started to seem a little anxious about something. We got him back in the car, but this time his rage was explosive. I got hit and headbutted a lot trying to keep him in his seatbelt, and he beat himself up quite badly. Continue reading “Why giving hash early is the right approach”

“The event” is done.

I really can’t go into details, but my sister insisted I at least make those in the know aware of where we’re at now.

My wife and I had a very stressful and emotional day. We didn’t know what to expect, and to be fair, we still don’t. The event is done. We did the thing that had the stuff and whatnot. At the end, we visited Alex, who was pretty darn happy. Continue reading ““The event” is done.”

Oops

We made a mistake and told too many people about a situation we meant to keep a bit more “secret” for a while. It’s probably not a big deal, but we should have mentioned to those people not to go crazy until we had more information. If you don’t know what I’m talking about, ignore this. If you do, shame on you for not reading our minds! Seriously, though, we didn’t think to tell you not to share our story, and it’s amazing the amount of support we’re seeing. I know it’s become a cliche, but we cannot express how much we appreciate your support. Continue reading “Oops”

Addendum – March 2011

Well, today we had Alex over for a visit to our home, and I have to say it was amazing. It makes up for all the difficulties we’ve seen this month. He was happy, playful, talkative, and very attentive and focused. We successfully gave him the hash this visit, but from the staff caring for him it sounds like he’s actually been like this for a few days now.

As much as I’d like to see prohibition die, I’d give up the entire cause if Alex is getting better through some other means. I really hope the Sirolimus is part of the reason things are going so well, because that would mean a medication he’s allowed to use is finally making a difference. I really do want to see more medical research for marijuana, especially given how much it helped Alex (and it still could reduce his need for other dangerous medications), but seeing my baby do better is far more important than anything else.

March update

This has been a pretty awful month. It started with a really great trip to Disneyland with our youngest – the first real family vacation we’ve ever had. It’s hard to call it a “family” vacation without Alex being a part of it, but even so, it was a really wonderful trip. I just wish that enjoying the trip didn’t make me feel so guilty.

After the trip, though, things went downhill for Alex. He’s had two extremely rough visits in a row. Of the three hours we were there last Saturday, he was happy for maybe twenty minutes, and raging for at least 45 minutes total. His arms were rough and bruised from biting himself so much, and he’s just looking miserable. To top it all off, we can’t get him to eat the hash anymore. The one time during his week when he could get some relief, and now he won’t take it. I don’t know what to try, but I feel like once again better information would help. There are so many things you can do with cannabis, there must be something else we can try.

It’s been tough to get around to writing here lately. With this new facility, Alex’s behaviors seem to have gotten worse. He’s about as bruised as he was when we had to get the state to intervene, and from the reports we’re reading, it sounds like he has some incredibly bad days still.

I was really hoping the Sirolimus would help his behavior, but so far this doesn’t seem to be the case. It’s hard to hold out much hope for anything anymore, which makes it very hard to write.

Here’s hoping this Saturday goes a bit better.

Can we trust Alex’s new home?

We got a very disturbing report not too long ago about somebody working with Alex who raised her hand as if to hit him, and when she saw she was being watched, backed off a bit… but then proceeded to tell my baby, “Sometimes I just want to slap the shit out of you.”

A week ago or so, we got a report about two staff members who were asleep on the floor when the 6am shift change arrived… and Alex was standing in the hallway completely unattended. Continue reading “Can we trust Alex’s new home?”