This week I attended Thomas’ appointment with a new psych med prescriber. A psych nurse practitioner. She was very nice and was interested in what I had to say; however a staff member from his group home attended the appointment as well. I was not expecting that. The staff just got up and came with us. I was like, oooookkaayyy… this is new to me so I let things be. In the past the group home nurse would go with him and call me after to apprise any changes in his meds.
Well somewhere along the way things became massively fucked up. The original group home nurse was replaced. I met the newer nurse (Danielle) via telephone when she called to inform me that a specialist doctor’s appointment for Thomas went well. I had no idea he even had such an appointment. Danielle apologize profusely, she thought I was in the loop. Not her fault. During the past, I want to say 6ish months or so Thomas’ meds were lowered and changed without the doctor notifying and/or getting the permission of myself or Tommy: the legal guardians. Thomas does not do well without proper medication management.
As a result, we’ve noticed changes in Thomas. He’s not often happy when he’s with us. He’s not joking with his sisters or even glad they’re here for dinner.
When the staff spoke with the new nurse practitioner she said that Thomas curses a lot. That he curses, gets it out of his system and is “ fine.” No. That is not fine. When I would speak at the appointment, the staff talked over me as if I did not know my son. To say I was upset is an understatement. I was not going to get into an argument in front of Thomas or the NP, so I kept quiet. The next day I called the NP and explained that I was not happy, the staff member spoke over me and I did not raise my son to curse as a way of being. She listened to me and explained that she did increase one med due to what I did manage to say the day before, that I feel Thomas is angry. Hence the frequent cursing and other behaviors. We spoke at length of Thomas’ medication history, what worked/what did not, etc…
I also spoke to the house manager and described the staff member’s behavior at Thomas’ appointment. He said it was unacceptable. I also spoke to nurse Danielle and filled her in on the past events and the med increase from the new NP.
I have yet to deal with the psychiatrist who decided she did not need my or Tommy’s permission to change our son’s medications. Everyone I tell this to is shocked and appalled; as are we. Initially I was too angry to decide the next step. I’m still angry but I’m not clouded by that anger and can proceed in a calm manner.
I was very angry at myself for not being more involved with Thomas’ appointments. Lesson learned. No one will speak for him the way I do. No one will advocate for him the way I do. I know my kid. I raised him and he will always be my son.
Menay O; mom to 4, Christian and thrift shopper on the side... 