Assessment

“So, how do you think he’s doing?”

That was the final question from a group of graduate nursing students this morning after a teaching exam of Lincoln at the University of Texas School of Nursing (where I am very proudly and gratefully employed).  When one of the professors saw a picture of Lincoln in my office and realized he has Down syndrome, she asked if I would be willing to bring him into one of her advanced pediatric classes to allow the students to watch an exam.  I didn’t even think twice when she asked; I just volunteered immediately because I figured what better way to advocate than to teach the nurses that are out there teaching other nurses.

Well, today was the day, and we met in one of the school’s simulation labs, a very pricey teaching environment that consists of a series of classrooms set up like a hospital wing, complete with all the appropriate beds, cords, scopes, syringes, and machines available in a hospital.  Oh, and there are also simulation dummies strewn about for the students to practice procedures on, which are frankly quite creepy at first, as Sam can attest.  Lincoln was a perfectly adorable little gigglebox throughout most of his exam, smiling and clapping, not spraying pee all over the examining professor even though she left his diaper off for a frighteningly long time.  Thirty or so students and faculty members sat on hospital beds and chairs to watch the exam, cooing and laughing right along with Linc’s antics.  Gone are the days of stranger fear, it seems, as Linc just soaked up the attention, showing off his signs and generally working the crowd.

When Lincoln finally erupted into screams because the crazy woman had the audacity to try and sneak a peek in his mouth, the professor moved on to Nico for a brief exam.  Nico, who had sat chattering happily to himself and coloring in his Star Wars coloring book the whole time, looked up at the crowd and said, “Whoa, I better take my shirt off for this.”  Yes, there are definitely times when I think he might take too much after his father, but I guess Nico figured that since Linc got cheers when his shirt came off, it only made sense to give the crowd more of what they wanted.

Throughout the exam, the professor asked us about Lincoln’s health, the doctors he saw, his NICU experience, his development.  At the end, she opened it up to the students for questions, and many of them wanted to know about his heart, about the logistics of getting to so many doctors, or about what his other medical issues have been so far.  They congratulated us for teaching the staff at the pediatrician’s office that there is a different growth chart for children with Down syndrome.  We were keeping up with most of the medical-ese and even got the chance to hand out some materials about Down syndrome and how to discuss it both appropriately and kindly in medical practice.    All in all, I was feeling like a pretty on-the-ball, take charge kind of mommy.  I was wearing out my elbow patting myself on the back when that last question came at us.

“So, how do you think he’s doing?”

How do I think he’s doing?  Gosh, I spend so much time worrying about how everyone else thinks he’s doing, what all the therapists and doctors say about his progress, his development, but I almost never get asked what I think about it all.    And even when I do start thinking about it, it can be defensively, like I have to show other people that what he can do is great and that he is progressing just fine according to all of the experts.

It was kind of strange to be treated like the one with answers when we are so often the ones with all of the questions.  In that classroom, though, we were the experts.  We were the ones who knew the most about Down syndrome, and we were the ones who were best suited to tell a room of highly educated nurses how Lincoln is doing overall.  Happily, the answer to that question is that he’s doing quite well.  His heart (as well as the rest of him) is healthy, his development is progressing nicely, and most importantly, he is an endearing, entertaining, amazing kid.

You know, before we went in to the class today, I was starting to get a little worried.  I was wondering if they would think that I’m doing enough, if they would be scoffing internally at my lack of medical knowledge, if they would think we were dropping the ball with these kids.  Would their teeth and their ears be clean enough?  Would we have missed looking into some vital medical concern?  And the truth is, I still worry about the parent-of-a-child-with-special-needs role, like are they going to think I’m too preachy if I advocate for proper treatment of patients with Down syndrome?  Are they going to think I’m doing too much, pushing too hard, getting too preoccupied with Down syndrome? 

What’s oh so telling about the experience today is that when the student asked how we think Lincoln is doing, it did feel at first like it was us he was evaluating.  It felt like he was asking whether or not we had jumped through enough hoops to get Linc the care and direction he needed.  But, as my answer started coming out, I realized two things.  First of all, he is indeed doing well, and though much hard work (mostly from Sam) goes in to that, much of it is also the fact that we got a really cool kid who amazes us at every turn.  Second, seeing our little family come together under that kind of mass scrutiny made me realize that even our meager advocacy effort pays off two-fold, both by teaching other people about DS and also by teaching us about ourselves.