Friday, 16 March 2012

Sucker Punch

Many of you may think that as a nurse, I didn't have to deliver bad news to patients or families very often, that it would be left to the MDs.  And in an official capacity that may be true.  I worked on an oncology unit and got to know my patients and their families quite well- some relationships lasted for years.  I cannot tell you the number of times I had a patient ask me if they were going to die, or a family member ask if they should move forward with an intervention for their family member or would it be futile.  Or how long did they have left to live?  There is an official way to answer these questions, a therapeutic, unbiased, (or what I call wishy washy) manner in which to respond.  And I did that.  It was very rare that my answer would be completely straight-forward and to the point, because really, does anyone ever know?  So I relied heavily on body language and eye contact to convey my message.  I know that my opinion was communicated very effectively this way, as was my compassion.  The staff and families had to wear masks all winter to protect patients against the flu- about 5 months of the year, our eyes were all they could see of us. 

Why is this relevant to my life right now?  Stay with me was Nathan's 6 month follow up evaluation with the school system.  4 of those months were home visits and for the last 2 months, he has been in the ABA program.  So this was a "touch base", how is he progressing conversation.  Thought I had steeled myself, wrong again.  In some ways Nate is progressing quite nicely, more appropriate play, more purposeful use of objects, definitely comprehending more language.  Still way behind in all of these areas, but progressing.  Language though.....ahhhh language.  When Nathan was initially evaluated, he was 21 months old.  His language was at an 8 month level.  Today I was told that in these past 6 months he has progressed to a 10 month level- sucker punch.  He is using "more" and "go" and a few others, but his case worker agreed with me regarding my recent concern about his use of "I good boy".  He is not saying it because he knows what it means, he is not "using" words, he has memorized the sound.  I came to realize this in the past week as I noted him saying it more and more, and repeating it many times in a row, and out of context.  It's more jargoning.....more purposeful jargoning, but jargoning.  So, I admit it, I did it.  I asked.  I said, is this what you would expect, is this normal for a child with these issues?  And I got the blanket response....every child is different, some take off, some show no progress at all, yada yada.  But I saw it in her eyes.  She is as concerned as I am.  Oh that hurts. 

We got into a discussion about the next steps for Nate.  I asked about several "DAN doctors" and her experiences with them, as they often work together.  I asked her about the doctor closest to us and again thought I saw that covert communication working through her eye contact.  Asked her about a couple others (effusively complimented them).  Then I looked at her, laughed and said, "writing down, Lynn does NOT LIKE Dr ______).  She cracked up and looked down and then said, ya got me.  Just checking.  That's what I thought- in her eyes. 

We will keep plugging along Mr. Nate.  We are moving in the right direction, albeit more slowly that I had hoped.  I don't trust too many people, but I trust Nate's pediatrician, and I have come to trust Lynn (his case worker with the school).  I can see her concern, but she is going to keep on working for you, and so are we.   


  1. I've asked the same type of questions many times. More so I can read the body lauguage of the person I'm asking than for their answer. I got so tired of the answer because it was always the same but I kept asking because I think it's a fair question from a mother of a child with special needs.

    We got Owen's report back from Kennedy Kreiger and kinally I got some answers to questions I've been asking but for the most part it's just a whole new set of questions. So stressful.

    1. I am glad you got some answers, if you ever want to chat,
      lemmee know. Think you are in my phone somewhere, lol