New job and stuff

Started the new job on Monday, visited Alex Tuesday, and am generally very busy. Not a lot of time to update here or respond to emails. The good news is that Alex has been able to go without wearing his helmet for a long time now (probably a full week by now, I think). We’re hoping his med combinations can actually keep him relatively stable for a while.

I’m still pretty angry that we aren’t able to get him the medicine he needs other than by giving it ourselves. His current meds are bringing him relief, and that’s obviously our #1 priority, but I want to be able to give him hash more than once every couple days. That’s the stuff that really showed a lot of promise, has the potential to cut back his other meds tremendously, and seems to be very safe, even if the hype were true about MJ causing IQ losses (in Alex’s case, we’ll gladly take that risk over the risks of his current legal meds). So far as I can tell there are no long-term studies to show the effects of his current medications in a growing child. It’s ridiculous that we can’t use the medication we believe to be the best for his situation. Hopefully I can get going this weekend on making some hash to bring him (got the bags, got the bucket, got the trimmings), but it’s completely unfair to him (and us) that he can’t just be given a medication that is safe and effective.

The really bad news is the facility he’s at is meant to be short-term, and they’re pressuring us to get him out of there and into a long-term facility. Fine, we’re okay with that, we know it’s not his final home. But they’re pushing hard to get him up to Portland. As long as we have to administer his medications, that is NOT an option. We can’t likely get to Portland more than once a week, and that won’t work for medicating him properly. Even if I can medicate 3-4 times a week, that’s insufficient, but it’s certainly better. I told them we aren’t willing to put him so far away if they’re unwilling to medicate, and their response borders on “too bad”. They’re wiling to put him on a waiting list for a closer location to us, but they aren’t keen on keeping him at the short-term facility for much longer. Why? Because there are too many “crisis” situations that need the space more…. I’d love to see people in a worse crisis situation than our son. Even the kids currently there seem to be a lot easier to manage than Alex during his bad times.

And you know what’s really great? The cause of these crises is budgetary in nature. More centers are having to close the doors to kids like Alex because our state can’t balance its budget. And through all this, a measure that could help the budget a little bit is getting almost no attention: the OCTA! Fix the budget, help the sick people who can’t afford black market (read: “good”) marijuana, get cops dealing with real criminals. COME ON, OREGON!

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One Response to New job and stuff

  1. Pingback: Alex updates – June 13th « Alex's Story