Monday, September 3, 2012

She is NOT Downs

It never ceases to amaze me how unprofessional some therapists are. This is one of my big worries about our upcoming move.  It took us a few attempts but I can honestly say we have an excellent physical and speech therapist.  It took some time to reach this point.  We had the physical therapist who insulted me when he insinuated that I wasn't working with Kennedy enough, because she crawled backward instead of forward first.  And then there was the speech therapist who expected Kennedy to sit still and focus on what she wanted her to, for an hour. 

In June we lost the Early Interventionist that we had worked with for over a year.  Kennedy had grown to love Amanda, although it took quite a bit of effort.  (Like the time Amanda hid on the kitchen floor, behind the table, peering around the wall.)  Since June we have had two new Early Interventionists.  I liked the first one, but after one session, I was told she was out of our district.  So today (yes, on a holiday) we met our new Early Interventionist.  And let me tell you, she wont be the last.  I know I've written about people first language before.  And as much as I cringe when I hear things like "Downs kids" I don't always correct people, as long as they aren't being inappropriate.  I definitely tolerate it a little more than I do the "r- word."

Today's therapist shocked me.  Apparently she knew nothing about Kennedy when she walked in the door.  I don't quite understand this.  I get a copy of the IFSP, and I'm positive that it says she has Down syndrome.  As well as that she had open heart surgery at 4.5 months old.  None of this should come as a shock to her providers.  I was a little surprised that she was so shocked that Kennedy wasn't walking yet.  Most kids with Down syndrome aren't walking at 18 months.  Then she commented on how quiet she was.  I told her what words and signs she knows, and explained that she's quiet around new people.  In my head I was thinking she should just be glad that she's not screaming.  Twenty minutes into the session it was like a bomb was dropped.  She looked at me and said, "She's Downs right?"  I'm still trying to pick my jaw up off the floor.  And in the 2.5 hours since she left, I can think of so many other things I wish I had said.  But, in the moment, while recovering from the shock, I told her that no, she is a little girl that happens to have Down syndrome.  Down syndrome does not define Kennedy, or any other child for that matter.  She continued to compare Kennedy to "other Downs kids" and even commented on how she was surprised we had another baby after everything we went through.  I'm honestly not even sure how to take that.  But more importantly I wish these therapists learned something about people first language in school or from their employer.

One thing is for sure.  I will be contacting my Service Coordinator and requesting a new Early Interventionist.  But I;m going to take it a step further.  I plan to contact the agency that she works for an let them know how inappropriate her remarks were.  I'm also going to ask that they educate their therapists in people first language so that they do not make such uneducated statements. 


  1. Hi Jennifer & Kennedy!!

    I love this blog post, I am a disability Support Worker from Australia and I too cringe when people in my field who assist people with disabilities don't use person first language! People first language should definitely be something taught to all medical professionals!

    Katelyn :)

  2. I am so glad you will complain. It is so unprofessional to walk in blind, let alone make such ignorant and offensive remarks. If you're brave enough to try to write her personally it might be a good idea. Who knows? Maybe you can even educate her a little... But it is really unfortunate that you got this from someone who is supposed to support and advocate for Kennedy and for your family.

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