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A year of reflection

cropped-hello.jpgIt’s been just over a year since I published my last blog post. I still get emails and questions from the blog so I thought I’d give an update. In January 2016 I became Clinical Coordinator for Speech Pathology in the Division of Developmental and Behavioral Pediatrics  (DDBP) at Cincinnati Children’s Hospital Medical Center. This has been a challenging and rewarding step forward in my career. It’s also meant re-prioritizing what I spend my “free time” doing.

  • I said “yes” to writing a chapter on therapy services for children with developmental disabilities (forthcoming).
  • I said “no” to keeping up with the blog and tweeting on a regular basis.
  • I said “yes” to a few more minutes of snuggling my sons in the morning.
  • I said “no” to getting embroiled in online disagreements.
  • I said “yes” to raising my voice. I have my state and federal representatives on speed dial (Well, programmed in my phone…you get the picture). It’s not hard to talk to 20-something staffers. Really!

Balance.

Balance is dynamic – we have to keep moving, learning, and growing to maintain it. Sometimes we have to let go. Other times we take something on.

Stepping into my new roll has challenged me to listen more. I’m especially eager to listen to voices of disabled adults. In all of our time advocating for our children with Down syndrome, do we include the very important opinions of adults with Down syndrome? If adults with Down syndrome are really “more alike than different” then their opinions on work, living situations, relationships (including sexual ones) matter so very much. I’ve been really challenged by this as a non-disabled sister to 3 adult siblings with Down syndrome.

I’m going to share some of the things that have encouraged, challenged, or propelled me to change below:

Disability Visibility Project – To Alice Wong – I owe a debt of gratitude for all the work you do with the DVP site and on Facebook. Thank you.

Person First Language and Ableism – For years I stood on my soap-box and preached “Child with diagnosis.” I’ve learned that some disability communities prefer identity-first language. This is just one article explaining what this means and why it’s important.

Disabled – Just Say the Word – “To be seen for who we are in our own right, and for what we experience, is, I think, a desire common to everyone.”

Guest Room – Perhaps the most challenging thing I’ve watched this year. A couple with Down syndrome facing an unplanned pregnancy. This left me raw. I’m thankful for Meriah and Melissa who were there to virtually hold my hand.

Disability Rights Education and Defense Fund – For information and updates on healthcare and education including action alerts.

I’ll be sharing more on Twitter as I come across articles, websites, and videos that help me to expand my understanding of the disability spectrum. Please share your favorite resources!

Jennifer

 

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2 thoughts on “A year of reflection”

  1. hi, I left a post about downs syndrome and childhood apraxia in 2013 when my bot was 4. he is now 8 and 4 years later, he is still non verbal. he has been tested for asd butthey think not he uses sign occasionally ( though I don’t think he uses as much as he knows by a long shot) and is very sociable. he also is able to play with objects like they are another object etc…but still he can not talk. he tries to say some words- his name Alex ‘ acth’ and a couple of others – though I cant think right now. so obv not common. Any ideas?

    1. Hi Tara! I recommend finding a Speech-Language Pathologist (SLP) with a background in augmentative and alternative communication (AAC). Research in AAC has shown that children have decreased frustration and increased​ communication. It does not prevent a child from learning to speak. AAC is not one size fits all. Even the apps available now a vary widely – some more user friendly than others. The most important thing is that your child develops a consistent communication system that can be used with multiple people (home, school, community). Also reading helps break down communication barriers too. You may want to look at Natalie Hale’s program. She’s written on using reading to help children with Down syndrome and apraxia learn.
      You want to look at this information:
      https://files.acrobat.com/a/preview/84c770f3-21dc-47c1-ac89-a7537f75625c

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