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Racing Toward Better Speech: #NDSC14 Presentation

Sisters hanging out. Jennifer and April (26)

Sisters hanging out. Jennifer and April (26)

The National Down Syndrome Congress (NDSC) Convention is in full swing in Indianapolis. Those of you attending #NDSC14 have access to my presentation slides through the convention app. If you didn’t attend or would like a quick way to download yesterday’s presentation I’ve attached them here: BekinsNDSC2014

While I have permission to use the photos and videos in every presentation, I remove the videos prior to online publishing. Thank you for understanding.

To those who attended the course yesterday – WOW! There were a LOT of you. Thank you for coming and the many kind words of encouragement afterward. A special thanks to Benji for talking to Elmo.

If you wanted to ask a question and didn’t get a chance, please feel free to email me at talkdownsyndrome@gmail.com.

~Jennifer

 

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A day in the life – Sister Texts

A day in my life now usually includes text messages from my sister April, 26 with Down syndrome. This recent exchange highlights our typical interactions, joking, and general interest in each others’ lives. April (A), Me (J) – Spelling and grammar kept as written.copy-jennapril-1.jpg

A: hey sis Lent season It’s already started I’m forgiving up meat any kind of beans and bake potatoes and sweets and candy even doughnuts I have to wait I go back into it for Easter

J: Good. You’ll be less fatty.

J: Stupid spell check. I meant FARTY ["fart" is verboten in my parent's house, so of course I text it to her]

A: Can you spell dumb sister

J: Yes. Spell check changed it.

A: Please sister do not mean about this that’s unkind I’m trying for my best waiting for Easter

J: Teasing you. Good luck with your Lent.

A: are you sure

J: Yes. Totally sure.

A: ok how about you what are you doing Lent

J: Giving up being mean to you. It will be hard. I think I can do it.

A: beside that sister

J: Oh. Cartwheels. No more cartwheels.

A: are you forgiving up Meat

J: No.

A: why

J: Why are you?

A: Yes. I’m forgiving up meat

J: No, I mean, why aren’t you eating it?

A: because its Lent

J: Well, my Lent includes meat.

There you have it. Lent is forgiving [for giving] up meat and I’m an instigator. All in a day with my sister…who happens to have a diagnosis of Down syndrome.

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Understanding the Spectrum: Severity of Down Syndrome

This morning I was going about my usual business, sipping coffee, reading blogs, and wasting time on Facebook when I came across an interesting post called “My Place on the Spectrum” by Jen on Organized Babble. Jen is a speech pathologist who works with children with autism. In talking about autism and her own identity Jen says,

“I firmly, truly, in my core, believe in what so many of us think and know: that autism is a spectrum. And it includes neurotypicals*. NTs and autistics are not fundamentally different – they just fall on different parts of the spectrum.”

This really got me thinking. We all share the spectrum as people, as humans. Usually when I think of a spectrum my mind conjures up a bell curve. This morning I envisioned a different spectrum. A rainbow.

CC Attributed Baldur McQueen

CC Attributed Baldur McQueen

My last post was about the questions graduate students ask me about DS. Interestingly enough the very first question submitted was this,

“I know that there is a spectrum of severity for someone who has Down syndrome. What are the landmarks or key elements that are common for each level?”

This question brings me back to the bell curve. Low functioning to the left; high functioning to the right. Perhaps without even meaning to do so we’ve associated degrees of intellect with value judgements. High functioning = Good; Low functioning = Bad. If you’re in an intellectually competitive environment then average isn’t cutting it either. It’s excellence or failure, with very little tolerance for anything other than perfection.

Bell Curve Grading Scale

I recognize the importance of understanding how a child learns and interacts with others; however, I see this as a very different type of question than the high-functioning/low-functioning inquiry. To illustrate this I’d like you to read the following descriptions and ask you to judge, “Is this child or adult with DS high-functioning or low-functioning?”

  • An 11-year-old boy who is non-verbal. He reads at a 2nd grade level and uses a communication device
  • A 3-year-old girl who combines words together clearly, but has self-injurious behaviors (bangs her head, scratches her face)
  • A 25-year-old man who can’t balance a check book. He is always on-time for work and remembers every family members birthday
  • A 48-year-old woman who has been in a nursing home since her parents died 20 years ago. She communicates with speech that is poorly understood without staff knowing the context

People are more than their intellectual ability, more than their functioning. So much more. Yes, in medicine and academics we like to fit people into neat categories and this has its place. However, as society we need to ask ourselves, “Is this question (of functioning) useful for members of our community?” What if we start thinking of our skills and experiences like a rainbow instead of a bell curve?

Yes, dear student, there is a spectrum of skill and ability among people with DS. A wide, beautiful spectrum and it’s the same one we’re on.

This Friday is World Down Syndrome Day and I will speak on Creating a Foundation for Successful Communication for the 321 eConference. Join me at 4 PM EST to learn about the importance of understanding how your child communicates and ways to encourage language at home.

*neurotypical is a term used to describe people who are neurologically or brain typical; AKA people without a diagnosis of autism.

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