Tag: media

Response to Jim Carrey’s use of Alex’s picture

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.

A happy Alex, yet another interview, and other updates

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 “A happy Alex, yet another interview, and other updates”

Moving to Facebook… maybe….

The interview is definitely going to air. We’ve even been contacted by somebody who saw a trailer for the interview. It was suggested that we put Alex’s story up on Facebook since it’s more visible there (and easier for us to maintain, less likely to get overwhelmed by traffic surges, etc). We’ve only started today, but Alex’s story is now an official Facebook page. Continue reading “Moving to Facebook… maybe….”

Weed Wars takes on the controversial stories ABC won’t

I’m tired of waiting.

ABC interviewed us in April. They were going to run a story about Alex’s situation, and it was going to be aired nationally, not just locally. I wasn’t going to say anything here until we had an air date.

But I’m tired of waiting. Continue reading “Weed Wars takes on the controversial stories ABC won’t”

Tune in to NORML Live tomorrow at 8pm

I was interviewed last week by NORML’s “A Different View” crew: http://www.facebook.com/ADifferentView420. The show will air tomorrow at 8:00pm and includes a brief discussion with myself and two other parents who have made the decision to use cannabis on their child. Continue reading “Tune in to NORML Live tomorrow at 8pm”

First interview!

I talked to a reporter today, after being contacted a little while ago and playing email tag for a bit. Who knows if anything will come of it, but he at least finds the story pretty interesting. In CA, where the MMJ laws are more relaxed, a story like this isn’t as rare. But here, our laws are a bit too strict for a child who only has the rage – which means others with similar issues may be having to break the law to help their children. Obviously in those cases, they’re not going to come forward and alert the media.

Here’s hoping we can get a story somewhere that shows people just how powerful medical marijuana can be for children whose only alternatives are to beat themselves silly or else take medications with serious, risky, and well-known long-term dangers.