As I think I have mentioned, my son is also severely disabled and lives in a residential program about two hours from me. His nurse sent an email to me and his mother.
Your son is doing well. He has been happy and free of any colds. Yesterday we asked the doc to look at some patches of red skin on his abdomen and was prescribed Clotrimazole cream for a Tinea rash. The area has not been bothersome to him, but we wanted to take care of it. So with your permission, we will go ahead and begin the treatment.
To which I simply responded:
How do you know the area is not bothersome to him?
That set something off in her mind … for she responded with:
Well, I have observed him when he is uncomfortable or I guess when I assume he is uncomfortable, I should say. Whether it is due to positioning, his AFO’s or illness. He becomes anxious, his entire demeanor changes and his mood is just “off”. He may cry or appear fatigued. The rash is not raging, nor inflamed or draining. We have been diligent about using his skin regime.
I apologize if I, in some way, offended you Mr. xxx. It would have been better had I said, “It appears not to be bothersome” or something like that? I try to care for your son to the best of my ability.
I am glad I made her think, and not happy that I seem to put her on the defensive. I have heard good things about her, never met her (there are several that care for him) but I was actually not happy that she projected how my son was feeling. So I responded …
First, call me by my first name.
Second, no you did not offend me.
As you may or may not know, his sister lives with me and she is similarly disabled. I go through a lot with her as to her comfort and what may or may not bother her. Neither one of them can scratch intentionally, nor communicate in any reliable fashion (as you know). I am extremely sensitive to her quality of life, from her point of view.
There really is no way of knowing if the rash bothered him at any level. It may well be a low level annoyance or something more that he is just used to. I try to be extremely careful not to project on to my daughter and instead do my best to see her point of view. I also understand that there are various types of tinea rashes and that they can be bothersome, but I am not a doctor so this may or may not be so.
Since I would not go to a doctor who treated my own rash based on his or her thoughts on if it bothered me , I would not want my children treated that way. Alas, they cannot communicate how they feel, so if one does project, it must be on the side of the rash (or whatever) is bothersome, not the assumption it is not.
So, you did not offend me in any way and I understand that the care you offer to my son is a very high level and I appreciate that. I was just asking the question.
In my opinion, best would be “he has a rash that may or may not be bothering him, but it does not appear to be a major discomfort …” if in fact that is true.
No hard feelings, no issues …. just a father’s two cents.
She does care for him, so I need to kiss up a bit. But come on, how can she say if a rash bothers him?
But then, what do I know?