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.
Today we had Alex driven up to our house for his visit, and to meet his new baby sister. His mood was all over the place, and we had a few really great moments, but overall the visit was terrible. Continue reading “One visit, many moods”
It’s been about a year and a half since we made the decision to have Alex placed outside the home, and still he has these horrible periods of sibbing (to “sib” means to engage in self-injurious behaviors).
We took some video during a recent home visit (about a week ago) demonstrating just how much rage and anxiety Alex still has. He appears to be “stuck” in a behavior of hitting his chin into his shoulder, and even his bath time doesn’t fully calm him down. Continue reading “Alex’s sibbing is still a major problem”
We’re going to be lodging a complaint against the hospital if something incredible doesn’t happen relatively soon. After Alex’s dental appointment on Wednesday, he had five teeth pulled, five fillings, a crown, and a root canal. Continue reading “The complaint”
We hadn’t been able to give Alex hash (we can’t do it on the premises of the facility, so it’s a tricky problem when he’s too angry to take anywhere), and his mood was improving. We’re not the kind of people to say it’s a miracle cure-all medicine, so naturally we had to consider the possibility that the cannabis was in fact making Alex agitated somehow, even though past experience showed otherwise. People change, reactions to different drugs change, etc. But after this past week, we saw some things that convinced us it wasn’t the hash. Continue reading “At least we know the hash isn’t hurting him….”
Best visit ever!!
We saw Alex this weekend, and it was by far our best visit ever. He’s happier than he’s been in a very long time. He only had one really serious meltdown, and it lasted only about ten minutes or so. And to be fair, it was my fault for trying to take him on a carousel ride “one more time” when I should have known better.
Continue reading “Best visit ever, bad news, good news”
We heard that Alex wasn’t doing well at his new home, and went to visit him last weekend. It was nothing short of a nightmare. He’s having the roughest time I’ve seen since he left us. We brought up some hash, which he took happily, and the first night we were there (Friday), it put him to sleep for 13 hours. This is a good thing, as he hadn’t slept at all the prior night.
Continue reading “The worst is yet to come”
Please read our agenda
— a lot has changed since I wrote up this introductory article
So many people lately seem to be coming forward with these amazing stories of how marijuana helped their autistic child. I’m truly happy for these people, but they’re only telling one side of the story. They succeeded. For whatever reasons, their endeavor paid off and made their lives better.
We don’t have this kind of success story to tell, and I think that’s exactly why our story needs to be heard. Continue reading “Marijuana, autism, and failure: a true story”