Tuesday, November 27, 2012

Maybe we're a bliss of another kind

Life at the Wright house has been very content lately. On Halloween, Perrin agreed to organize and clean out his room and return to his bed, which helped all of us quite a bit to get back to a comfortable bedtime routine. Since then, there has been a gradual improvement in behavior and mood with Perrin.
We decided to take him off the trileptal, which had helped with decreasing his mania over the summer but seemed to have flipped his switch all the way to the extreme other end of the spectrum, and he was belligerent and miserable all the time. We slowly started to see a happy, funny kid re-emerge from his cocoon of grumpiness. He was enjoying playdates with his friends, and we weren't walking on eggshells all the time just waiting for him to blow up.
In early November, however, we started seeing huge increases in tics. He started licking his lips so excessively he was chapping the skin surrounding his mouth. A few times I even saw him hit himself in the head repeatedly, and he began telling me that they were upsetting him. Schoolwork became brutal; it would take him 20 minutes to get through a Bob book simply because he had to swallow or lick his lips for several minutes after just a handful of words. He got so frustrated just trying to finish a simple 8 page book that he'd start screaming or jump up and refuse to finish. It was heartbreaking knowing that he wanted so much to do a good job and just get through his work in a timely manner so he could move on to more fun things, and I felt horrible trying to push him to do something that was so challenging to him.
So we started him back on the clonidine right before our vacation to Texas for John's brother's wedding. I admit I had been excruciatingly nervous about the idea of taking Perrin to a wedding with his tics as severe as they had been and also not knowing how he would act overall. I anticipated a lot of issues and tried to prepare not only myself but the family members that would be witnessing any possible explosions. 
I can honestly say that I have never been more pleased to have worried over nothing. The trip was a huge success! Perrin's behavior was fantastic, and he even interacted appropriately with almost everyone. He really hit it off with his cousin, and the two of them danced their faces off at the reception. Thanks to my sister in law, Beth, we were able to head off a potential sensory overload and retreat to a quiet room for a little down time before hitting the dance floor again. I even got him to slow dance with me.
I think this trip was as successful as it was primarily due to a good combination of medication and the acceptance of our families. His risperidone dosage may make some people's eyes bulge out of their skulls, but when we tried to decrease it or take him off, he was nonfunctional. Manic to the point of not being able to carry on a conversation, depression so deep he would lie crying in the floor for an hour, and tics so severe that he was in pain. Believe me, I'd love to not have him be on this medication, and I'm hopeful that with time, we may be able to try again to take him off. The Daytrana patch, when the damn thing stays on, is amazing and wonderful and was the reason he was able to sit through the wedding ceremony. And I know it is helping because it fell off today, and I felt like I was trying to teach a child hopped up on meth. He was simultaneously so spaced out that he forgot how to spell his last name and so hyper that he had to jump on the trampoline every 10 minutes to just to go over flash cards.
I can't even say in words just how much I appreciated how kind and patient everyone was with us, and how everyone treated Perrin like anyone else in the family.  It may sound like that would be a given, but I have so many friends whose family members do not accept their children. I, myself, have a family member with whom I no longer speak because he treats Perrin as though he were defective and has chosen not to acknowledge him in any way. So to have everyone embrace him and all his quirks was so heartwarming and made it so much easier for me to relax and enjoy our time spent with everyone. No one stared, no one asked me what was wrong with him, and no one gave me that disgusted look that I see so frequently in my community.
 Overall, we've reached a level of bliss in this house that we haven't seen in awhile. I'm sure that everyone who witnessed Perrin's miraculously pleasant demeanor must think I've got a crazy dose of Munchausen by proxy or perhaps just overdramatic. And that's fine by me. Because I have these memories of smiles and laughter and fun that will carry me through the next several meltdowns.


1 comment:

  1. Because we are family, I had tried not to jump in with a response every time you two posted on your incredible blog. This time, I just want to say a word of encouragement, not only to your family, but to others who read your blog. Never give up hope for yourselves,your special family member, and for your family. Most families are full of love and compassion, and want things to be good for others, as you saw on your trip south. If your community isn't that way, keep going back to the family well, and dip deep. It never runs dry.
    Your visit was such a blessing for this pair of grandparents, especially, and I so treasure the wonderful hugs, and the image of granddaddy and grandson walking and talking, holding hands. I know, having immediate family, and extended family, with some form of seratonin deficiency--Tourette's, Asbergers,OCD, ADHD,depression,and so on-- that your challenge is great. I just wish we were closer to be able to spell you for a time. We love you all, and are privileged to have you as part of our family.