It was obvious last night Janey was pretty sick---she had a fever and barely slept, just cried a moaning cry all night, and she was refusing anything to drink---when she tried to drink, she screamed. I kept her home today and although I don't usually rush to go to the drs, I had a feeling I needed to, especially because she can't tell me what's wrong. It turned out she has pretty bad strep throat---it showed up almost instantly on the rapid strep test, which I guess usually doesn't happen. But getting to that result was just awful---I guess I've been lucky over the years, but I didn't my regular doctor and in fact didn't even go to my regular office---my doctor is part of a group that has lots of locations and I chose a nearer one for today. The nurse practitioner I got obviously had no understanding or sympathy for autism. She kept asking Janey questions, although I told her she would not get answers---I think she thought someone Janey was just shy and if she asked enough, Janey would answer. Finally she gave up on that, saying something like "I know you understand me, so tell if if you want to". I felt like screaming already at that point. Then she seemed very surprised Janey wasn't totally open to have her ears looked at, and after at first acting like I was crazy to immediately hold Janey down, saw quickly I had to. Then she tried to look in Janey's mouth. No way. She put in a tongue depressor and tried to sort of pry her mouth open. I said Janey would bite the depressor, and she shrugged me off. Janey did bite it, and had half bitten it off by the time I forced her mouth open enough to get it out. Then the NP tried a last ditch effort to stick those strep testing swaps in Janey's mouth. Janey freaked out, and when she got the swabs out, the NP saw Janey had bit the end off them. She sort of freaked and tried again to get Janey's mouth open, but I just put my hand in front of Janey's mouth and she spit them out for me, which she is pretty good about doing. By that point, the lady had had enough, and said she just couldn't do it, and would just give Janey medication without testing her. I said no, that giving Janey medication was so hard I wasn't going to do it unless I had to, and that I could hold Janey in such a way that she COULD get the swaps (I had told her this at the start, but of course, what did I know?). The lady left without talking, left the door open, and said in a loud voice "Can anyone helps me with a strep test on a NON-COMPLIANT PATIENT?" And then lots of muttered complaints about Janey. Finally, she got a medical aide to come in, a young lady who must be the brains of the office, and she did exactly what I would have done---held Janey's nose until her mouth opened, and then held her mouth open gently but firmly and got the swab nicely. I thanked her very much. The NP was obviously super annoyed by then. It was actually the medical aide who came right back in to tell me Janey did have strep.
Lots of ranting, but my points are a few---why couldn't the NP LISTEN to me and BELIEVE what I was saying? Janey DID NOT understand her, was scared to death, has no idea why she is there or why we want to open her mouth, is feeling sick to boot. And LET ME DO what I know works---it's not the NP's way, but I know Janey, and I know the quick and firm approach will save us all a lot of time and anguish. And DON'T call Janey non-compliant. She is 5 and she is autistic. I would have been fine with her saying just that---"could anyone help me a little with an autistic patient?" Autism is not a bad word. I know Janey's autistic---it doesn't upset me to hear that. And don't fall into all the old stupid beliefs---I felt she though I was someone speaking for Janey and preventing Janey from speaking. God knows if Janey could speak for herself, I would love it beyond all reason. I always let the boys speak for themselves at the doctors, from the time they could speak. They are both very confident and outgoing with medical people, I think partly due to that. But Janey can't. And I WILL speak for her.