Screaming at God

I decided that I needed to be by myself for a little while so I could read all the BPD/Abilify research and try to sort some things out. I talked to Ken about it and he agreed. He usually always deferred to my judgment when it came to the issues of the boys’ educational and health needs. And at this point in our lives, Ken was so pre-occupied and worried about his own health and our future, that he just couldn’t handle one more thing. Luckily, he was doing well enough physically and had finally mastered the art of hooking himself up to “Bill” (feeding pump), that he was okay with me leaving for a little while. I decided to go down to Dalton, GA, about 1/2 an hour away. I gathered up all of the research, kissed all of my guys and took off down the road. I got a hotel room for one night, treated myself to dinner at the Cracker Barrel, and settled in to start reading.

I had just started wading through the pile of articles when my cell phone rang. It was Mama. She had called the house to check on us. When she asked for me, Jesse said, “She left. She’s at a hotel.” (That, by the way, is a typical type of response from a person with Asperger’s Syndrome.) Instead of telling Jesse to give the phone to Ken, Mama called my cell phone, all in a panic, wanting to know “what was going on”. After several minutes of assuring Mama that everything was okay and I only needed some quiet to deal with the situation at hand, she finally calmed down. Truthfully, though, I’m not sure she was completely reassured. Later on, I wondered why she would even entertain the thought that I could possibly “leave”. I had to take care of Ken. And I would NEVER, EVER, EVER leave my boys. But, at that point, I guess she may have been worried for my sanity. Some days, so was I.

Every article I picked up just seemed to stab at my heart. And, yes, Jesse did display a few characteristics of a person dealing with Bipolar Disorder. But the very same characteristics he displayed could also be attributed to someone dealing with Asperger’s Syndrome. The information on Abilify was frightening. It was classified as an “anitpsychotic” drug, falling into the general category of “psychotropic” drugs. Psychotropic drugs ALTER THE CHEMISTRY OF THE BRAIN!!!!! Preliminary studies had shown fairly good results in adults with BPD. But there was ABSOLUTELY NO RESEARCH on how this drug affected children! In fact, there was very little research about children with BPD! The possible side effects of Abilify were enough to send me screaming for the exit, and those were just the mild ones. I knew that no matter what else we decided about Jesse, there was NO POSSIBLE WAY that we could agree to give this brain-altering drug to our 12-year-old son.

As the evening progressed, my research time began to turn into “wailing” time. Before long, I was pounding the furniture and screaming at God. I just couldn’t understand why this wonderful boy of ours, who had already been through more hell than any adult should have to endure, was now having to deal with another potentially horrible situation, not of his own making or choosing. Why in the world, couldn’t God just give Jesse a break for once?

Finally, exhaustion settled in and I fell asleep. Don’t know how long I slept, but when I woke up in the wee hours, I knew what we had to do. We had to get another opinion. In my heart of hearts, I just knew that Jesse was NOT bipolar. I also knew that he DID have Asperger’s Syndrome. That decision made, I drifted back to sleep.