Tuesday, November 16, 2010

The Bounced Q

A check-up today.  No specialist, no follow-up, no new ailment under investigation - just a run of the mill check-up.  7 years old.  No more dread, rather a focus on facilitating Addie’s fledgling self-advocacy, communication about medical and health issues with her communication device, helping the doctor start to understand how to meet her part way and grant her a say in her care.  Not like those early appointments when I was assured to be sent to another specialist and when I couldn’t afford to think about more than one body part at a time.

During well visits, I like the part where Doctor asks about the overall child, not related to illness, but about nutrition, school, friends, and interests. I learn a lot about my older daughter as she answers these direct, simple open-ended questions.  She loves that I’m not meant to answer for her, that she has the final say.  I look forward to the day when I don’t answer on Addie’s behalf anymore.  We’re not there yet with her communication, nor with some of the concepts like nutrition.   So today Doctor asks me.  We talk about diet, about sleep, activities, about general health and then school.  Then he pauses at the part I’d forgotten about from my 11 year old’s appointments.   In the end, this segment was unrecognizable, it was altered so much by how Doctor views my second born.

While on the topic of school and just having heard she spends her entire day in a regular first grade classroom, receiving therapies during class, working on modified curriculum, using her device and sign language to participate socially and academically, Doctor asks a question that I did not realize until later was a complete substitute for the standard question in this slot.

“The kids in her class, are they nice to her?”

Hm.  I thought it an odd question and had to pause before launching into my confused answer.  Had I realized at the time what the question was that was ripped out here and replaced with this one, we might still be there as I clarified things a bit for Doctor.  Oblivious, I rallied to stammer “Um.  Well, yes.  Well, not always.   Sometimes she’s a turkey, like kids can be.  But yes, they get along pretty well, not too many squabbles.” 

His turn to pause.  It was clearly not the answer Doctor expected and caused confusion on his part now. Since I was still trying to make peace with the inquiry itself in my head, I let it go without offering more.

We got through the appointment.  She did better than she has in a long time.  She would not allow any looking in ears, but I have no worries there, so we skipped it.  All in all, she was more agreeable than in the past – we even got height and weight with relative ease (relative to the times when she collapses and does that magical thing she does where she suddenly weighs 300lbs for as long as she needs to in order to get out of something).  There were even brief moments when she seemed amused by Doctor, his funny tie and the way he checked the baby doll’s heartbeat before checking her own.

As Addie, her sister and I exited the building I was mostly relieved – no further appointments, no follow ups, just the usual annual checks we need to do because of her diagnosis.  We have until spring and summer for those, so no rushing to arrange anything further.   I thought back to her first 3 or 4 years, when each appointment begat more appointments, which begat procedures.  Today felt so mundane and simple, all I had to talk about afterwards was her new weight/height stats.

Except that Doctor’s question about the niceness of Addie’s classmates still gnawed at me.  He’s known Addie her whole life.  What does it mean when he truly questions whether kids are nice to her?  Does he really think it’s a 50/50 chance?  He’s a father; would his kids not be “nice” to a bubbly, clever girl with intellectual, communicative and medical differences?  And why ask that of Addie and never of Cate?  He never asked me if Cate’s classmates were nice to her. Does it fall into the realm of Addie’s medical issues if the answer were no?  Isn’t it more telling to ask all patients – “Do you choose to be a kind human being when faced with differences in others?”  The question still bothered me.  I just didn’t understand why it was something for Addie’s check up notes, what medical meaning either a yes or a no would have.

Vaguely aware of the girls’ chatter in the backseat, I ruminated and drove home.  At one point, Addie piped up pointedly from the back seat of the car.  I’m not sure if she was talking to her sister or to me, but I tuned in at the right time.  Or perhaps she truly was trying to clear things up for me.  She used her communication device to say “Megan B is my friend.  She came over to play.”

Friend.   That is the question that went unasked.  That is the question taken out, presumably to spare my feelings since surely the answer would be no.  That is the question that was replaced with tentative inquiry regarding whether Addie’s peers were civil and respectful to her or not. 

The missing question:  “Does she have a lot of friends at school?”  Or, as it would be asked directly to most patients, including my older daughter, “do you have a lot of friends at school?”

Doctor is surely ignorant of how his substitute question reveals lowered expectations.  I don’t think he was aware of the disrespect shown to Addie by replacing this question with the other.  I’m sure his intentions were good, but I can’t help but feel those intentions took me and my potential feelings into account, rather than Addie, her actual feelings, or who she is as a person.   Are we, Addie and her family, only to hope for a placid life void of cruelty?  Is that what we’re to reach for?  That kids (and one day her adult peers) smile down on her and pat her head?  As long as nobody is mean to my daughter, we’re doing the best to be hoped for?

Good intentions need to mean leaving the questions as they are for my kid with differences.   A Doctor should be capable of conceiving of the possibility that social connection is as probable for Addie as for any other 7 year old.  

My daughter does have friends.  She even has a fair number of friends.  She would answer as much if she were asked.  She might even name some friends, who she sits with at lunch, who her reading buddies are, who came over, whose house she’s visited, who came to her party, whose party she’s gone to, who she shares secrets with, who likes to swim as much as she does, who she’s in Girl Scouts with, who makes her laugh, who she makes laugh, who needs a pat on the back sometimes, who celebrates victories with her, who she gets in trouble with…

If her answer were different, if she answered that she did not have friends, I would then be signaled that her teachers and I have been remiss in facilitating friendships. It would be my wake up call. 

But the question went unasked.

Yes, Doctor.  She has friends.  For Addie, that is an area of significant good health.


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