I have mentioned in past blogs that one of Jack’s unpleasant behaviors is pretend sleeping or playing possum as we Southerns say. If you’ve ever played possum before, it was usually to get out of doing something you disliked such as washing dishes (I could be guilty of this one). Playing possum takes on a whole different meaning for Jack. When Jack plays possum, it can go one of two ways, he can become violent or become totally & completely unresponsive meaning he goes limp, collapses wherever he is & is in a catatonic state. These behaviors are usually a result of him not getting enough attention or overexerting himself. It doesn’t take a lot for Jack to overexert himself either because he is bed-bound most of his days & nights.
Once when Jack was around 10 while at Mama & Daddy’s, Jack out of the blue decides to play possum. Daddy asked him if he was playing possum & Jack jumped on Daddy like a crazy person in a violent, unprovoked attack. What set him off, we don’t know. We were able to restrain him & get him calmed down after about ten minutes, but that lead into more pretend sleeping for the next few hours. At that point, we put him in his room & left him alone. Through the years there have been many pretend sleeping events, often done out of boredom. He has had them at families homes while visiting which results in me & Lee feverishly trying to get there to thwart a possible violent outburst. This pretend sleeping ain’t no joke y’all, it literally scares us to death.
Fast forward to present day, Jack doesn’t do the play sleeping thing as often as he once did. That is mostly because we have learned to alter our reactions, know his limitations, & know that we have to constantly give him attention when he will allow us. Jack has so many obstacles to explain, that it is hard to tell the people that are taking care of him what he can & can not do, it is really a huge learning curve taking care of the kid. Everything is a learning experience for those outside of our home. Today, Jack spent some time at his caregivers house. She has small grandchildren & kids of her own that Jack loves dearly. He enjoys spending time there & we are grateful for those few hours of respite. Ava & I have been trying to watch American Idol for days. We have to watch shows in 1-3 minute increments because life is so hectic with Jack. Of course into a few minutes of watching Idol, his caregiver called & told me to get to the house, Jack had been in the floor for several minutes, unresponsive. I left with supper cooking not knowing what I was going to, a seizure or playing possum. Either is about the same degree of aggravation for us. She lives just a few minutes from our house. When I arrived, I found Jack in the floor pretend sleeping & catatonic. I absolutely hate this. While Lee was on his way to assist, I tried everything in the book to stimulate Jack from giving him a surprise when we got home to asking him about music, nothing was working. When Lee arrived, he & I had to carry Jack out to the car, all the while Jack never once opened his eyes & was as limp as cooked spaghetti noodle. Jack had to be lifted into my Yukon. Once inside, his head fell over like a dead person. It was like a scene from Weekend at Bernie’s. I rode through town like this, people probably thought, “oh that’s just the Berrys, wonder what Jack has done now”! He even had to be carried into the house. This child was very with it, he won’t come into the house with his shoes on-ever. He did fling them off before entering, then he collapsed on the bed. Let me stop right here. I find it so hard to believe that Jack who gives us a pure fit about everything under the sun is the only person to take his shoes off before entering the house because he doesn’t want to make the floors dirty. Stop & think about this. He refuses to listen to anything we ask him, refuses to listen to reasoning about the endless amount of gift cards we have to buy for him to gift to his catfishers, won’t bathe or brush his teeth for days on end, but he will take his shoes off. How did I succeed in doing that?
Back to the above drama, this ordeal went on for about an hour, then suddenly Jack perked up like nothing happened. He got back to his business of chatrooms & calling the Apple support team about some issue with his iPad. And let me take a moment to brag on his phone skills with customer service reps. Unlike myself, Jack is very polite. He is, “why thank you sir”, “thank you ever so much for your help”, “have a great night”. Where is this politeness when dealing with his family? After talking with his caregiver, she said that Jack had been chasing her grandkids around the house, then suddenly fell out. He became overexerted. Just as Jack doesn’t feel the sensations of pain, hunger, or thirst, he doesn’t know when his body has reached its limitations, which results in such a pain in the butt ordeal for us.
If Lee & I didn’t have a business we owned & operated, I don’t know what we would do. The times that I have needed him nearly instantly because of something Jack has done or some of Jack’s demands like needing his toenails clipped in five minutes & will only allow Lee to cut them or Jack calling in an order at our local restaurant Dixie Burger but refusing to ride with me to get the order so he calls Lee instead to pick it up or the 10 phone calls I receive from the moment I walk out of the house until I get home. How could we have made it if we worked at traditional places such as a bank or for a power company? Our business has been a blessing to us simply because of the flexibility.
Since the time has changed, Jack has suffered with sleep issues. I was just able to get him on a good sleep regimen, I guess all good things must come to an end. It has been after 3am before he falls asleep now. We have never gone through this with him before to this degree. As he ages, it seems like each stage of difficulty that he has gone through, has gotten worse. Dravet affects the whole body. The mind, his heart, GI system, bones, gait, behavior, sleep cycles. It is really a cruel disease. The patients that have this disorder that are higher functioning like Jack, have the worse behavioral issues, the ones with low functioning capabilities are often sweet angels. Dravet has not just affected Jack’s body & mind, it is doing a number on Lee’s & myself as well. All I can say is, what’s next??? I saw this meme the other day & thought to myself, I bet this is exactly what people say about me & my blog!