Thursday, October 15, 2015

The time I called a doctor out and did him a favor.

I've corrected people on more positive language toward people with disabilities.  I've kept my mouth shut on a few occasions so I wouldn't end up needing bail.  I've wished I said something when I didn't...aaaand I've wished I'd kept silent when I didn't.

Over all, I try to listen to people's hearts and respond in a manner equal to what I think they are going to hear.  Abusing someone will not change hearts or encourage friendships.

I know that doctors are most under scrutiny by parents of kids with disabilities.  Which, to some degree I agree with, as they have access to the most forward information of successes.  But in another, I feel like their very profession encourages grouping needs under headings.  When they see a child with a single disability, they see the flow chart that comes from that definition.  When you see a child, you should see the child first, and the disability only as an outflowing of how you will need to alter or at least understand any changes to your communication and relationship.  When you go to the doctor, you WANT them to see the impact and consequences of that defining diagnosis...

However, I've seen doctors that have been crucified for the off the cuff remark, "Most Downs kids"...They have been black balled by entire communities and warned off by EVERYONE.

Person First Language, simply asks that you use semantics to underscore a person's individual value without any diagnosis.  For example:  Elise is a girl.  Elise is a girl with Down syndrome.  Elise is not Downs.  She is not That Downs girl.  Do you see?  Do you feel the value and respect difference?

Summary:  Elise, as I have said, is having some originating problem that is damaging her.  She is completely exhausted...sleeping to excess and struggling to cope with life as a consequence.  My first address came at the pediatrician, to make sure I wasn't missing a virus or infection or allergy.  Second, I requested a blood draw, a CBC with differentials, and a thyroid rule out cancer relapse or her thyroid crashing because of puberty and hormones.  This week we went to the cardiologist to rule out heart damage from the chemo or some kind of damage/tearing due to her congenital heart defects that were repaired at 3.5 months.  So far, we have no answers.  Frankly, this is good, because other than a virus or thyroid, the responses would have been gargantuan and dangerous. I am still treating her asthma, and we have an appointment in a few weeks.

ANYWAY, at the cardiology appointment, we got a doctor doing his cardiology fellowship.  He looked about 15, with the long, foofy, Bieber hair, and freckles.  The words "darling baby boy" should not come to mind when you are at the specialist for your child's medical conundrum...yeah.  But he heard my concerns and discussed with me back and forth like I was a peer.  (This is lovely, not all cardiologists have this kind of respectful manner!)  Some of his advice was put on the back burner, but some was put into my current medical pot to stir about.  At one point, he stumbled onto the generalization, "Many Downs kids".  At the time, we had already established a positive back and forth.  He had already been respectful to me, to Elise and her history, and given genuine input to the questions we are dealing with.  I heard it as it was meant.  I heard his compassionate heart, his knowledgeability of our situation, and his insight into possibilities.

After I got home, I realized that keeping silent had done HIM a disservice.  He is in training for a specialty that will be involved with a high number of kids with disabilities.  By letting that slide, I was putting him up on the chopping block for his heart and knowledge not to be heard by not using person-first language.  So I called the office back, and asked how I should get into contact with him over a concern.  Through a long chain, I ended up sharing this information with what felt like half of the office...and eventually he, himself called me back.  And I got to share with him my regret at not saying anything.  That I was not calling for me or my child, but that I was appreciating HIS specialty and learning process, by sharing with him MY specialty.  And he responded like a champ.  He heard me, defended his ignorance with what he MEANT to say, and graciously accepted the criticism AND education.  I am confident that he will be more conscientious in the future, and I hope he will tell his fellowship peers and anyone who trains under him in the future.  I am also rather grateful that I was late in my response, as I inadvertently educated about 4-5 other people in that office as well.

Step outside of your world and your comfort zone with confidence in your own unique skill set, and you will witness the changes.


  1. I have heard kids with Down syndrome referred to as "Downs kids" or just "a Downs" more than I've heard any other non-person-first language about kids with other special needs. In schools! From teachers! I've even heard teachers refer to children as "just a typical Downsie." It makes them sound like teddy bears or something, instead of like people!

  2. Learn something new everyday. People often refer to my oldest as a special needs child, not a child with special needs, but it never occurred to me to correct them or think twice about it, and I have used the term myself. If I have used it with you or said the wrong terminology ignorantly, I apologize. -susanna