Statement by Karen and Jeremy about misuse of Alex’s picture:
Alex’s story, and in particular the picture Jim Carrey used is not about vaccine safety. It is a story of extreme autism and self-injurious behaviors. It is a story about TSC (Tuberous Sclerosis Complex) and its association with autism. Alex safely received his vaccinations — his genetic disorder was present at birth.
We believe that families who are struggling with extreme autism and severe problem behaviors need more help, in their own communities, than they are currently receiving – gaining access to highly sophisticated Applied Behavior Analysis such as what Alex was provided at Kennedy Krieger Institute’s Neurobehavioral Unit at Johns Hopkins, gaining access to mental health providers trained in highly complex cases such as Alex’s, and providing more options and resources in local communities to those families who are no longer able to care for their loved ones in their own homes. We also believe that the medical community at large needs to look more closely at the potential for medical marijuana in treating these severe behaviors.
There is hope for individuals suffering from severe problem behaviors who have autism (and/or a developmental disability), however, many families have given up hope due to lack of resources.
We feel Mr Carrey was irresponsible in using our son’s image to further his agenda, and feel he should issue an apology for using our son’s image without permission. If Mr. Carrey’s image was used this way, legal action would almost certainly be taken.
We’re not happy that Mr. Carrey used our son’s picture, but we are happy to use this attention to spread the word about our son’s actual struggles.
Posted in Alex
Tagged Alex, autism, media
We got Alex’s OMMP card recently, and we now have a donor (TJ’s Organic Gardens), so we’re able to give Alex a blend of high-CBD and high-THC oils, mixed to whatever ratio we think will work best. We’re not sure how much he needs or what ratio, so it’s still a bit of a guessing game (TJ’s has been giving us pointers), but we’re back to being able to dose him again, which is obviously very important. And we can dose him TWICE a day since he’s so close to us. In practice, we’ll probably miss a dose here and there, which sucks, but so far we’ve hit a lot more two-dose days than not.
In other news, the U.S. Senate is considering a bill to reschedule cannabis. Please support the Carer’s Act so that kids like Alex can get cannabis without jumping through absurd hoops. (For instance, if we go on vacation, nobody is legally allowed to dose him)
I touched a little on it recently, but Alex’s new home’s upper management seem to be significantly more concerned about doing what’s best for Alex than his last home. This is just one of many reasons I’m thinking this year could be the first one where things really start looking up. Continue reading
[ I apologize for the lack of contact, I'm actually at work right now delaying my "clock-in" time, so to speak, in order to write something up - it's been a crazy, crazy couple of 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. Continue reading
Alex visits are extremely draining when he’s almost three hours away (round trip). As such, I won’t be posting a lot about him unless there are major changes. But I figured our ballot measure is worth at least a quick mention.
A few weeks ago, New Approach Oregon got their cannabis legalization initiative on the ballot. It will be measure 91 on the ballot in November. Continue reading
This is a bit delayed, but we finally got Alex out of KKI and back to Oregon! He won’t be getting back on OMMP any time soon as his new home is over 90 minutes away from us, making daily administration impossible. For the moment, though, this is a good thing, as odd as that might sound…. Continue reading
Well, after a lot of fighting we got Alex to the Kennedy Krieger Institute. It was a ridiculous battle, and shame on Providence for trying to deny somebody as obviously in need as Alex. Their initial denial was flimsy at best, claiming various administrative errors. We appealed and they denied with much more coherent (but still ridiculous) reasons. Continue reading
I’d like to say first and foremost that we wanted to thank all of our supporters. in the past few months, even with very few updates from us, we have received tons of emails and Facebook messages supporting us and our cause. The responses and emails about my recent blog post, “I think I’m done”, have been extraordinary. To answer the most common concern I’ve seen: no, we’re not giving up on cannabis — we’re just not writing updates as often. Continue reading
After stating the blog would go on, I haven’t touched it.
Partly I don’t feel like putting up more because I’m satisfied that Alex’s story was able to really be told. Partly I feel like the updates aren’t helpful since it’s just repetitive information – Alex is happy, now he’s unhappy, now he’s happy, and so forth.
But honestly, a lot of why I’m done has to do with Alex’s situation just not being one that makes for good updates. Continue reading
First, since surgery, Alex has been doing really well. This should not be the case from everything we’ve learned about the SEGA (the growth in his brain they removed), but we’re not going to complain. We’ve been told by doctors that the surgery wouldn’t likely help him long-term, and based on when the SEGA first showed up and when Alex’s behaviors hit, it definitely seems unlikely the SEGA was to blame for his self-injury, but who knows?
Of course, he’s still having to be wrapped up all the time. The video I posted recently still shows a more easygoing version of Alex than what we’re seeing lately. He’s super happy, but seems to need his security items a lot more. Continue reading
Posted in Alex
Tagged Alex, media, update, visit