Thursday, September 17, 2015
Nate's Swallow Study
Two words: Epic Fail. Today, we had Nate's swallow study at Duke. Now, this is a first for us but had asked before how it would go. As soon as I walked into the radiology room, my heart sank. I knew when I saw where they wanted to put him that this was not going to work. But, put my game face on knowing these people do this every day and know every sort of kid trick known to man. What they don't know however, is PTSD. See, you have to put him in this chair and strap him in. And there would be mistake #1. Told them about his history and how he has SEVERE PTSD. They seemed to nod in agreement. But he only has to take one bite. Umm, yes, but he has to sit still. So, put him in again after I'd gotten him calmed down. Sure enough, the head banging starts and I didn't bring his helmet. The self- harm and slapping starts. One lady gives him a spoon full of pudding as he's screaming thinking he's going to swallow that stuff. In that state, he will not swallow that I said. He said he has to eventually. Said nope, he's going to spit it out. Sure enough. Warren btw was parking the car and followed the screams in the hallway. You know, behind all those steel doors. No lie. They tried putting a pillow so if he banged his head it wouldn't hurt so much. I'm guessing at that logic you know. I know their intentions were well meant and they thought this test important. However we got nowhere fast and had a serious meltdown to contend w/ as he's trying to claw me to get out of that seat. Couldn't take it any more and took him out for good. This was not a bad team by any means. I just don't think they've ever had a severe PTSD patient like Nate. Despite me explaining it more than once. If you are in the adoption world, please explain this to your docs. So, took a pudding covered kid away from the fear of being strapped in. See, they strapped him in a chair in Bulgaria to preform electroshock therapy on him b/c they thought it would help him walk. The child is now terrified of being strapped in. Car rides are horrifying. So, plan is for a clinical evaluation where they see how he's eating there. I said that may not work either b/c it's a new environment. But, may give that one a shot. I think the best bet is to video tape him here and give it to them. He can not be put through mroe trauma than he has to. Bottom line. Some things are just not worth it. This was not a life/ death test. I should have taken him out for good after that first reaction but I didn't. Was trusting a team of professionals and I should have trusted my gut instinct instead. Again, not bad team of people, just not as schooled in PTSD as what I am. I've had more than one child w/ PTSD. Though Nate's is not officially dx'd it has been thoroughly documented and discussed amongst all his doctors. Plus, asked my other son's therapist today if she would even take a non-verbal child this young to see someone. She agrees w/ me...mute point at this juncture. Mean time, we have to make this world for Nate a 'safe' place to fall. And some days, that means making hard calls just like today.