Alex’s introductory article has spurred a few questions from people we know, and some confusion, so I modified that article a bit, but figure I should follow up as well.
Answers
The fact that we ran out of marijuana confuses a lot of people – the simple explanation is that we just didn’t know what was involved in getting a supply. In our state, there are no dispensaries. We had no idea what was involved in finding a grower or making hash until it was too late. We were too stressed out and working to keep Alex safe to be doing the research we needed.
Alex’s inconsistent results were also a problem. We don’t know enough about marijuana, and at the time we just thought pot was pot – so when it worked really well one day and we saw barely any improvement the next, we were totally mystified. We had no idea that people built up a tolerance, or that there were so many different strains to try.
Why keep pushing for marijuana if it didn’t fix him? Simple – it worked more than any other medication we’ve tried, and there are a lot of ways to try it that we haven’t. Different strains can help in different ways; dosing via hash vs. hash oil vs. eventually teaching him to use a vaporizer; etc.
Some people want to know why we don’t just take Alex back into our home so we can give him his medicine. It seems like a simple choice if you’ve never seen Alex’s outbursts, but the simple fact is we can’t manage it anymore. Unless marijuna could fully “cure” him, we couldn’t do it. A single intense outburst is enough for him to do serious physical harm to himself and others now, because he’s gotten so strong. We were hoping the marijuana would give us a few more years with him, but we always believed that he would eventually have to be cared-for outside the home.
I can’t answer why the facility won’t administer marijuana. It’s medically legal for him, but they claim their federal funding means they cannot violate the federal ruling. I believe there must be a way to get a waiver of some kind.
The future
We’re looking to get our story to every media outlet we think can help. I have a college newspaper that may be interested in interviewing us, and somebody at NORML who may be able to help spread the word. We believe that the help we need is out there, but we have to get our story heard by right person. I expect things would move forward fast if journalists started asking the top people why they can’t find a way to get a waiver or an exemption for our son.
If the media can’t help us change the minds of the people running the center, then maybe they’ll help us find legal representation for Alex. If we can prove that Alex’s situation merits a special case, and his story causes enough of a stir, even the federal government may have to listen.
Alex is on a roller coaster – some days are fairly good, but others are horrible. Our last visit was awful, but the prior visit was great, and they’re saying he’s now doing really well again. That’s wonderful, of course, but we know he’ll go through the intense self-injury again. He always does.
I’m hoping marijuana can get shown in the proper light. Fear and ignorance need to be dispelled so people can see what a wonderful plant it is. Hemp cultivation would be a huge boon, and calming down with a joint would be so much healthier than drinking a couple beers. But at this point, I’d rather fix Alex first, then worry about changing the world.
Actually, I don’t think smoking it is that healthy, but I do agree with you on the rest. If you’ve ever “harshed out” from smoking, you’ll realize the damage you’re doing to your airways.
Overall though, I do think it’s healthier.
Smoking a single joint every day won’t do that, from what I’ve heard, though personally I’ve never even done that much, so I can’t say for sure.