Alex updates – August 17th

It’s been a while since I had much to say about Alex’s situation. He’s been his usual self, on and off rage issues, and it’s just been hard to want to write much when his situation is only a little better than when he was at home.

Our last several visits have been a big letdown. Alex’s behaviors seem to be ramping up again or something, and we haven’t had much of our smiling little boy in a while. He has his moments of happiness, of course, but they’re getting less and less common.

Bad visits

The weekend before last, our visit to Alex was pretty typical – he wasn’t terribly sad, but he wasn’t particularly happy, either. One thing that’s heartbreaking is how happy he used to be when he saw us — that’s just not been evident recently. Even when he’s not raging, he’s still not showing us grins and giggles like he was during some of our May visits.

Last Tuesday, we had Alex over to visit us, and it was a pretty sad visit, with him hurting himself and never being terribly happy about much of anything.

Wednesday we went to visit him because we were in town (screening with a long-term facility for Alex). This visit was a bit worse, with more episodes of self-injury than Tuesday’s visit. We drove him to a park, and lasted maybe 30 minutes before deciding he was better off back at his home.

Friday we had him brought to our house again, and he was a complete wreck. We couldn’t contain him, he was hitting himself, biting himself, scratching at his head and face frantically, tearing at what little hair had grown in since they last shaved his head, and hurting anybody who tried to intervene. We had to call his home to have him picked up early. I kind of wish I’d gotten some of it on video to show people that his situation is still pretty awful sometimes.

Sunday we had him over again, as his grandmother bought a giant inflatable slide/pool toy (think of a bounce house, but with a waterslide) for the two boys. We figured if anything could make him happy, that would be it. His head had been shaved again, which tells me his hair-pulling must have continued after Friday’s visit. We gave him a much larger dose of hash than we had been, figuring maybe he was in more pain than usual and needed something stronger to relieve him. This visit, we had the staff at his home stick around to be sure they could take him back if he got out of control. An hour after their arrival, he went back home, because his behavior, though slightly better than on Friday, was still more than we could manage.

Hash is still his best option

We got a call Sunday around 8:30pm. Alex’s ride home went incredibly well after about ten minutes in (his car behavior lately has been horrible) – he was smiling and happy the rest of the drive. When they got him home, he was running and playing and giggling. He was happy and went to bed without incident. We gave him the hash on arrival, and just barely 70 minutes after his dose, he lost all self-injurious tendencies for the day. We only gave him 60 minutes because we were so drained and didn’t figure the dose was going to work. While I’m very happy he got relief finally, I just wish there was some delivery method that was faster and more consistent, so we wouldn’t be constantly guessing and then when we finally get it right, we miss our chance at being with him.

Tonight we’re visiting him again to spare him the pain of the car ride out to our home. It’s so hard to get up the energy to visit when there’s a pretty decent chance he won’t really care to see us, and will likely be hurting himself a lot again. Even if we get the right dose, we won’t likely see it tonight – we can’t leave until I’m off work, and won’t arrive at his home until probably 6:30. We’ll have to leave around 7:30 to get dinner taken care of. I hope he has a good night, but it’s just painful knowing that it’s unlikely we’ll get to see it if he does.

Taking it to the media again

A while back, we emailed lots of media outlets with no response. We basically tried to say we wanted our story heard so we could get Alex the medicine he needs — but nobody answered us, and we were left not really knowing what to do.

My wife recently “came out” about the situation, so there are a lot of people who can tie this site to who we are (anonymity clearly hasn’t done us any good, so we’re willing to give that up if it helps Alex). Somebody who had known her a while ago came forward with some potential PR help. We’re not sure what can be done or how to do it, but this friend of my wife’s is going to put together a list of contacts, and try to help us summarize the story in a way that makes it easier for somebody in the media to quickly go through the important information.

As usual, if you have any legal advice or media advice, please share. We want to get Alex some kind of exemption or something to get his medicine. If the staff are allowed to handle valium, haldol, etc. then why aren’t they able to put safeguards in place to allow these same people to handle hash?

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