The transition from pediatric medical care to adult care has been horrific for us. Ethan is a complicated person with a handful on ongoing medical issues. Explaining things all over again and attempting to build relationships with new providers has proved disappointing and exhausting.
Recently, we needed to transition from a local children’s hospital to adult care for medications Ethan takes for ADHD and his long litany of additional mental health issues. This has been the most unpleasant.
I called nearly EVERY SINGLE adult psychiatrist in the state of NJ. Nope. Not comfortable seeing people with developmental disabilites. Oh. Ok. That’s not a problem?! We settled (and I truly mean ‘settled’) on a developmental disabilities clinic that requires a 30 minutes drive, but is accustomed to the meds Ethan takes. There was some consideration as to whether we can use a regular family doctor or internal medicine practitioner for this, and we are still investigating it.
We showed up for a recent appointment, at which point Ethan needed to meet the Nurse Practitioner who would continue his care during the year, as you can only see the actual psychiatrist once a year in thier model. It was obvious she was attempting to figure out where Ethan functions cognitively and although Ethan enjoyed his time at the appointment, I don’t believe the NP liked it quite as much.
She asked Ethan to fold a piece of paper in half. He asked why. She said because she needed him to. He said ‘No thanks’. I asked him if he wanted to get home anytime soon. He said ‘No, I want to go to 7-11 for chips’. Fine, then fold the friggin’ paper in half. He complied.
She then asked him to fold it again. He said no. He turned to me an informed that the volunteer work he does at the church requires exactly 1 half fold – never two! (Remember, Ethan’s communication occurs in a seriers of difficult-to-understand verbalizations, ASL, signs he’s made up and gestures. I have to translate EVERYTHING.) I said ‘Please just do it so we can go.’ He did.
She held up an item and asked what it was and he responded that it was an iPhone. He also told her that it was old and too small. He said his was newer and bigger. She asked what it is used for. He said it was for playing games and watching Youtube. She wanted to hear ‘phone calls’. Sorry.
She asked about dates and birthdates and days of the week. He told her to ask me since I’m good at ‘those things’. He replied that it was ‘Hump Day!!’, exactly like this commercial. She didn’t get it. He laughed for a minutes straight. It was Monday and he knew that.
She asked what season it currently is. He said Winter. Cold. And Olaf is happy. He said all of this dead pan. I translated. She stared at me and asked if he knows it’s not Winter. Um, yeah. I think someone wasn’t catching the gist of the conversation and it wasn’t Ethan.
She prescribed his meds on an old fashioned prescription pad. She has no ability to electronically transfer his hard to manage meds and we won’t be back. Moving on. Ugh. Like I said, exhausting.
This has been a long and arduous process, but it’s mostly because of the doctors. Not Ethan.