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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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What questions do we have about Down Syndrome?

Each I year I have the privilege to guest lecture for the speech-language pathology graduate students at the University of Cincinnati (UC) and Miami University. This summer, the UC class submitted questions to me ahead of time – a first. Here is what the pile looked like.

questionsI was excited to read the questions. Yes, all of them! Questions are so important. They lead us to a better understanding of what is happening, why things happen, and if our opinions need to change. Questions vary depending on your perspective and experience. You will see this reflected in the way they are asked.

Over the next few months I am going to feature some of the inquiries I received from the students such as:

“Because Down syndrome is easy to detect early, how early for you suggest beginning intervention for these children?”

“Do you face any behavior issues when working with children with DS?”

“Is there any speech improvement or difference with children with Down syndrome who have undergone surgical intervention such as tongue reduction surgery?”

“What types of things do you use the most to motivate these individuals with Down syndrome to work on their communication skills?”

“What are some of the biggest challenges from adolescents into adulthood for individuals with Down syndrome?”

Just a taste taken from seven typed pages of student questions. Students that one day may work with children with DS. I love teaching and sharing my experience. Dispelling myths, creating excitement, exploring truths – As a guest lecturer I get all of the fun and none of the grading (my professor husband is quick to remind me of this). I’m looking forward to sharing answers to some of these questions in posts very soon!

In the meantime, are you a parent or professional working with young children with DS? If so, please join me on Friday, March 21 at 4 PM EST for Building a Foundation for Successful Communication, one of many sessions being offered through the online 321 eConference. I will talk about how early communication is affected by other areas (e.g., motor skills, cognition, sensory needs, etc) and how to create opportunities for talking.

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Make It Monday: Fulfillment Pyramid

Today’s Make It Monday is not for your child. It’s for you. Really! WP_20140107_003

Let’s be honest. Sometimes life hands you a bunch of lemons and you want to squeeze the juice into its eye instead of making lemonade. That’s been my 2014:

  • Week 1: My 5-year-old gets mono and we get all the questions that naturally follow. Shortly before this, I hurt my foot on a long run and decide I don’t have time to deal with it.
  • Weeks 2 – 3: I get Type A flu. Yes, I had my flu shot. And pneumonia. Oh, and a double ear infection.
  • Week 4: I finally get out of bed and realize my foot still hurts. I go to the sports medicine doctor and get the diagnosis: stress fracture. I’m sporting an air inflated walking boot for 3-6 weeks.
  • Yesterday morning: We had no water. A water main broke so our entire street was without it. Also, I rolled over in bed before getting up. Not usually a problem for people, rolling over. For some reason a muscle in my upper back went *ping* and spasms commenced. Thankfully my friend Cory’s husband Dave is a chiropractor who gave me great advice when this happened before: ice and Biofreeze.

Does your life ever feel like a Lemony Snicket-esque series of unfortunate events? When I get overwhelmed I vacillate between internal panic and slap-happy. Thankfully, Shawn Fink of Abundant Mama had this wonderful post on Real Mantra’s for Real Parents. Her words breathed life into my worn out soul.

Take a breath.

Be still.

It is okay to experience many different feelings – not just the happy ones.

Look for peace in the moments of unease.

I glanced over and noticed this on my mantel: My fulfillment pyramid.

pyramid

What is a Fulfillment Pyramid you ask?  The Fulfillment Pyramid is a visual reminder of ways to Nourish my heart. What are the things I really need to satisfy me? I came across the Fulfillment Pyramid Project on Rachel W. Cole’s website. Rachel is an amazing woman who encourages readers to think about what they really hunger for in life. You can download the Fulfillment Pyramid Project toolkit on Rachel’s website. To get visual ideas, visit the gallery of pyramids here.

When I started working on my pyramid, my boys wanted to make one too. I explained that I was making a pyramid to help me remember what I want to think about this year. Things I love. My son Jack’s (5) is spot on.

pyramidjack I thought at first it said, “I love Mom.” No. It says, “I love worms.” Completely Jack. So if your kids want to make one with you, resist the urge to shape what they want to say. Let them choose their own thoughts (words or drawings). It’s not perfect, but it’s totally Jack.

Parents of children with Down syndrome are constantly thinking of their child. The pyramid is a simple way to take a moment for yourself and map out what you crave. Sometimes it’s easier to think of what wears us down. The unfortunate events that pile on our shoulders. For a moment, focus on what fills you up – what brings you peace?

  • Reading
  • Walking
  • Talking to other parents who “get it”
  • Yoga
  • Your faith

There are no wrong answers. Take the time to check-in emotionally. It is worth a few minutes, for you and your loved ones.

If you decide to make a pyramid, please feel free to share at talkdownsyndrome@gmail.com! Please mention if it’s okay for me to post. I’d love to see what inspires you.

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