I was enormously happy -- thrilled, in fact -- with the level of care that we received at U.Va. this week when Oliver had his little quarter-ectomy (confused? See previous post). Every single staff member that we interacted with was professional, helpful and caring. I loved that everyone, the surgeons, the nurses, the medics and the orderlies, all addressed Oliver and included him in the conversations about what was happening to him. I was relieved that every staff member noted Oliver's special challenges and asked what they could do to make it easier for us. I knew that Oliver would have difficulty accepting an IV and so they made every effort to avoid making him get one until the last possible moment and then they discussed all of our options for making it as least traumatic for him as it could be.
When it became clear that we would be discharged soon, I started to think of how I might communicate my thankfulness to the staff and was happy to learn that a satisfaction survey would be mailed to me. The discharging attendant told me that the feedback they get from these surveys is important to them and it helps them to make positive changes in their procedures. Alright, I thought! Rock on. I hope I never have to go back there but I'm happy to give them my input in case I do.
So, I'm soliciting thoughts on the best way to express the one, tiny, little complaint that I have.
When we were first admitted to the pediatrics emergency room the nurse, upon learning that Oliver had autism, asked me: "So, how severe is his autism?"
This is a question that I often struggle to answer because, honestly, I think it has little meaning. And in this case I couldn't grasp what relevancy it might have.
So I looked at her with my mouth open and totally at a loss, stammering: "Um, well, he has trouble communicating. ... I'm not sure I understand your question. ..."
"Oh, you know, they have those scales," she said drawing the shape of an inclined plane in the air with her finger, "where does he fall?"
So I asked: "What exactly do you want to know?" I wasn't being pissy, I just didn't get what kind of information would be helpful for me to share with her that might have relevance to what was about to unfold."
"Well, how cooperative can we expect him to be?"
OH!! OK, now it is all clear.
"He is really cooperative and has been handling everything great. I think it helps for him to have me with him but otherwise I'm so pleased with how he is doing. He's been very cooperative. "
So here's the thing: severity of a person's autism has no bearing on how well that person will deal with pretty much anything. Every single person on the spectrum has challenges that are unique to that person. A better way of asking the question might have been: What special challenges do you think we should be aware of with your child in this situation?" That would leave the door open to talking about sensory challenges, communication limitations, stranger anxiety, trouble with transitions, etc. And it would definitely give them more useful information than any number on an autism rating scale would provide.
I'm looking forward to filling out the survey and sharing this with the staff because I think it is a small but vitally important point to make. And I'd like to ask: If you had the same experience and were filling out the survey is there anything that you would add to my statement above?