Diagnosis Discussion- Down Syndrome Part 3

What NOT to say to a parent of a child with Down Syndrome… (in no particular order)

  1. You better watch out for those guys, they tend to be fat and lazy. (From a medical professional…)
  2. My prayers are with your family. (guest at a wedding talking to parents of child with Down Syndrome)
  3. That’s a great thing you are doing there. (random person at the park that approached the parents)
  4. They’re such happy people aren’t they? (basically anyone that has approached the parents of my patients with Down Syndrome)
  5. Hi, my cousin’s son’s best friend’s sister, also has Down Syndrome. (another random person that spots my patient in a crowd, this has happened with all my patients with various family relations).
  6. Did you know that you could have tested for Down Syndrome?
  7. Trisomy 21! trisomy 21! (random patron at a market, yelling towards a parent, like the guessed the right answer…)
  8. Hi there cutie!… (excessive attention given for no reason when walking around a store)
  9. Well aren’t you a special one…
  10. Well he doesn’t really have Down Syndrome. (School administrator response when a parent asked about another child with Down Syndrome at a school that is in mainstream classes)
  11. He/ She is always smiling, I heard that they’re always smiling and happy.  (Any comment that groups a child in the “they” category is pretty insulting to most parents).

–In physical therapy and the majority of other medical professions, we try to use “person-first” language, meaning the person comes first with any discussion involving their diagnosis.

  • This means you should say “this child with Down Syndrome.”
  • You shouldn’t say “that Down’s kid” or “my downsies patients”

–Another situation my patients have encountered is people using the “R-word” in passing at the park or market, but also when trying to set their child up in a school program.

Here is some info from www.r-word.org

Why “intellectual disability” is replacing “mental retardation”

The R-word, “retard,” is slang for the term mental retardation. Mental retardation was what doctors, psychologists, and other professionals used to describe people with significant intellectual impairment. Today the r-word has become a common word used by society as an insult for someone or something stupid. For example, you might hear someone say, “That is so retarded” or “Don’t be such a retard.” When used in this way, the r-word can apply to anyone or anything, and is not specific to someone with a disability. But, even when the r-word is not said to harm someone with a disability, it is hurtful.

Because of this, Special Olympics, Best Buddies and the greater disability community prefers to focus on people and their gifts and accomplishments, and to dispel negative attitudes and stereotypes. As language has evolved, Special Olympics and Best Buddies have updated their official terminology to use standard, people-first language that is more acceptable to constituents.

Rosa’s Law and Legislature Challenges

On October 5, 2010, U.S. President Barack Obama officially signed bill S. 2781 into federal law. Rosa’s Law, which takes its name and inspiration for 9-year-old Rosa Marcellino, removes the terms “mental retardation” and “mentally retarded” from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.” The signing of Rosa’s Law is a significant milestone in establishing dignity, inclusion and respect for all people with intellectual disabilities
More on Rosa’s Law >

And with all that, onto some great blogs I’ve come across from parents of children with Down Syndrome:

First here is another video from the collection I shared in my previous post.

Here’s a link to their facebook page.

And here are some blogs:

http://noahsdad.com

                    

Here is a link to a number of blogs from people with some connection to someone with Down Syndrome.

Hope these posts were helpful for anyone looking to learn more about Down Syndrome from a PT perspective, or at least from my perspective 🙂

And if there are any other “interesting” comments you have received if you are a parent to a child with Down Syndrome, or if you have just heard about stories with “interesting” comments, let me know and I will add them!

Again let me know if you have any questions!

 
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Categories: Diagnosis Discussion, Humor in pediatrics

Tags: , , , , ,

3 replies

  1. Loved this post! As a parent of a toddler who has Down syndrome, I can attest to the litany of odd greetings & unsolicited remarks we encounter in public. The one that always strikes me as strange is when someone we’ve never met sees my daughter & then comes in close to me (usually touching my arm or shoulder) & looks at me with pity & says, “oh bless your heart!” Or the Ultimate Insult: “what a hero you are!” (directed at me, the mother, for presumably ‘keeping’ my baby). Oh how people mean well 😉

    Like

  2. I totally love Dad telling the man that his child has Lupus. The man’s response is priceless because it just shows how totally clueless he is.

    Like

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