Reader Response

I received an e-mail response to my post, Language Guidelines (day 15 of my
31 Days challenge).  I thought her message was interesting and worth sharing.
She wrote the following:

I found your post, Language Guidelines, rather...interesting.  :)

I so agree with what you wrote regarding the "nicer" ways to refer to disabled people, but you'd be surprised at how many families of these children refer kindly (with no ill intentions at all) to their family member as "my down's baby" or "my severely-burned child" or "my little handicapped boy."  It usually takes me by surprise when they say it, and it's not a way I plan to refer to any of them -- ever.  But I do understand that when they do it, they're not degrading their child, just pointing out which one.  Still, what you posted was a great thought for someone who might never have considered this before.

One other thing I must say...as an explanation.  I always refer to DS as "Down's syndrome" for a reason.  It's not that I'm careless and haven't looked into the proper way to write it! When I read on your blog this morning that the correct way to write it is without an apostrophe, I quickly looked it up again.  The first thing my computer brought up was this:
http://blogs.reuters.com/gbu/2007/02/11/down-syndrome-or-downs-syndrome/
and the second thing was this:
https://www.ndss.org/Down-Syndrome/Preferred-Language-Guide/
I was glad because I knew the way I wrote it was correct, though it might not be the most common way today.  Let me tell you why I prefer to write it the way I do....

::  Down's syndrome was first identified by Langdon Down.
::  Asperger's syndrome was first identified by Hans Asperger.
::  Alzheimer's disease was first identified by Alois Alzheimer.

These other two always are written with an apostrophe since they are named for the one who first identified them.  Down's syndrome used to be written with an apostrophe, and it was dropped over the years.  I still choose to use it for a reason.

Several different times I've been asked things like, "Is it normal for him to be so happy? Doesn't he have Down syndrome?  Aren't those people usually 'down' acting?" (like downcast); or they've said things like, "He doesn't act like he has Down syndrome!  He's so happy; he sure doesn't act 'down'!"  This is when I was able to explain to these individuals that the name "Down's syndrome" came from the man who identified the disorder, not from the behavior of these people!!!

Personally, I feel that calling them people who have Down syndrome is degrading!  They aren't Down!  They just happen to have a disability that was first identified by someone who happened to have that name!

(Note:  I obtained permission from her to quote what she wrote in her e-mail message to me.)

Do you have any comments or thoughts you'd like to share regarding my Language Guidelines post or this response to it?  :)

Language Guidelines

Pleasant words are like an honeycomb, sweet to the soul, and health to the bones. ~Proverbs 16:24

Here are some Public Awareness Guidelines.

• The correct name of this diagnosis is Down syndrome.  There is no apostrophe (Down).  The "s" in syndrome is not capitalized (syndrome).
• An individual with Down syndrome is an individual first and foremost.  The emphasis should be on the person, not the disability.  A person with Down syndrome has many other qualities and attributes that can be used to describe him or her.
• Encourage people to use people-first language:  "the person with Down syndrome," not "the Down syndrome person."  A person with Down syndrome is not "a Downs."
• Words can create barriers.  Recognize that a child is "a child with Down syndrome" or that an adult is "an adult with Down syndrome."  Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children.  Adults enjoy activities and companionship with other adults.
• It is important to use the correct terminology.  A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with," or "is afflicted by" Down syndrome.
• Each person has his or her own unique strengths, capabilities, and talents.  Try not to use clichés when describing an individual with Down syndrome.  To assume that all people have the same characteristics or abilities is demeaning.  Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Here are some guidelines for using People-First Language.

1. Put people first, not their disability.
   ::  A "person with a disability," not a "disabled person"
   ::  A "child with autism," not an "autistic child"
2. Use emotionally neutral expressions
   ::  A person "with" cerebral palsy, not "afflicted with" cerebral palsy
   ::  A person who had a stroke, not a stroke "victim"
   ::  A person "has" Down syndrome, not "suffers from" Down syndrome
3. Emphasize abilities, not limitations.
   ::  A person "uses a wheelchair," not "is wheelchair-bound"
   ::  A child "receives special education services," not "is in special ed"
4. Adopt preferred language.
   ::  "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"
   ::  "typically developing" or "typical" is preferred over "normal"
   ::  "accessible" parking space or hotel room is preferred over "handicapped"

source:  National Down Syndrome Congress

I encourage you to allow some pleasant words to flow from your mouth this day.  :)

Special Speaker

Occasionally, we have had the pleasure of hearing a guest speaker at the parent chat on Saturday afternoon at the Star Gazers family camp.  One year, our guest speaker was Karen Gaffney.

Karen Gaffney is the first person with Down syndrome to swim the English Channel as part of a relay team.  She accomplished this feat in the summer of 2001.

Karen trained vigorously and relentlessly for more than a year to prepare for the notoriously rough 21-mile crossing from Dover, England to Calais, France.  Karen's training gave her the endurance she required to swim two or three one-hour legs in 60-degree water, the strength she wanted to battle wind and waves, and the speed she needed to pull herself through the water faster than the current.

Also of note is Karen's educational background.  In 1997, Karen graduated from St. Mary's Academy, a prestigious college prep school in Portland, Oregon, where she earned a regular high school diploma.  In 2001, she graduated from Portland Community College, where she obtained an Associate of Science degree and received her teacher's aide certification.

Karen is the president of the Karen Gaffney Foundation, a non-profit organization that is dedicated to championing the journey to full inclusion in families, schools, communities, and the workplace for people with Down syndrome or other developmental disabilities.  Through this foundation, Karen strives to:

• instill renewed hope in the hearts and minds of new parents of a child born with Down syndrome or other learning disability for a full, productive, and inclusive life
• motivate parents to new thinking and positive action so they will begin immediately to build the potential of their child
• heighten awareness and raise expectations of students, counselors, educators, and those in the medical profession of the capabilities of children with Down syndrome to learn, grow, and contribute in an inclusive setting
• promote community involvement and action for the support of people with disabilities

source:  Karen Gaffney Foundation

Karen delivered a motivating speech at Star Gazers.  We were impressed and inspired by what she already has accomplished in her life...and encouraged to consider the myriad of possibilities and opportunities life holds for our dear ones with Down syndrome.

Star Gazers, Part 3

The last day, Sunday, is always a short one.

After breakfast, we walked back to our cabin to pack.  On our way, we saw a deer in the middle of camp!

After packing up most of our belongings, we drove the short distance to Pretty Place for chapel/reflection.  You can see why it's called Pretty Place.  :)

After chapel, everyone headed back to camp to watch a slide show of the weekend. The staff always does a nice job of putting together a recap in photographs, put to music.

A tired boy after a long, fun-filled weekend

After lunch, we loaded our vehicle and said our good-byes...until next year!

Star Gazers, Part 1

In September every year, the YMCA Camp Greenville hosts a weekend camping adventure, called Star Gazers, for families who have children with Down syndrome. The camp is located in a beautiful mountain setting at the North and South Carolina state line.

This year, as usual, the weekend began late on Friday afternoon with check-in and cabin assignment.  All of the cabins have sinks and toilets...some also have showers. I've learned from experience to register early!  I'm not much of an outdoors-type person to begin with...but factor in having to walk to a shower house, and I'm not a happy camper!  :P

Our cabin assignment this year - Mulligan II

Slices of a large tree branch were provided...for making name tags.

My husband, making our name tags

T, wearing his name tag

Supper was served in the dining hall.  (It takes T a while to "warm up" to being around so many people.)

After supper, we participated in the ice breaker games.

Dancing a little

And then...the best part of the evening...the campfire and making s'mores!

Toasting a marshmallow

A little closer to the fire works better!

Is it done?

Yum!!

Next, it was time to make our beds.

Waiting...

All tucked in for the night....

Night-night sweet boy....

Fall Finger-Painting

I remembered doing a wonderful finger-painting activity with T...I just didn't remember doing it two years ago!  Wow, how time flies.

Here's a repeat of part of that post from October 29, 2011.  You can read the original post in its entirety here.

T loved this finger-painting activity...because he didn't have to get his hands in the paint!
(--a sensory issue for him, related to Down syndrome)

You can see how he "gets into it" more and more as the activity progresses!

I found this terrific idea for no mess finger-painting at Sandy's site, Moments of Mommyhood.

We made these fall leaves with T's artwork.  They are hanging in our kitchen window.
Fall beauty at its best!

Making Activities Feasible

It was fun...and interesting...to browse the collection of other bloggers who are taking the 31 Days challenge, too.  In looking through the buttons in the Family Life category, I noticed that someone was planning to post each day about special needs homeschool Pinterest hacks.

31 Days of Special Needs Homeschool Pinterest Hacks

The title caught my fancy:  special needs (check mark), homeschool (check mark), Pinterest (check mark).  I had to check it out.  I'm so glad I did!  I discovered a wonderful blog written by Gabriella Volpe.

First, a bit about Gabriella Volpe:

She is a homeschool consultant for families of children with special needs.

She is a certified teacher with 16 years of classroom experience working with children who have special needs.

She is a mother who homeschools her child with special needs.

She is adept at modifying and adapting curriculum so it meets the specific needs of children with special needs and helps those who teach them.

She is an advocate for her child with special needs.  She defends his rights and speaks in his best interest until he can do so for himself.

source:  http://www.gabriellavolpe.com/

Next, a bit about her 31 Days:

She states that she spends hours perusing Pinterest and finds a ton of ideas for homeschooling.  She guesses that we do, too...but that after pinning ideas for activities, we find ourselves never going back to them because the activities are not doable for our children with special needs -- our children who have special needs that prevent them from being able to execute the activities as presented.

For 31 days, she is showing us how an idea for an activity or project on Pinterest can be hacked and adapted/modified into something that is doable for a child with special needs.
She is giving details on how to make the activities and projects she finds on Pinterest feasible for a child with special needs.

source:  http://www.gabriellavolpe.com/31-days-of-special-needs-homeschool-pinterest-hacks/

You should check it out!  :)  She is very insightful.  Her posts are bursting with helpful ideas and doable adaptations and modifications!

Get To Know Me

You might be interested to know (especially if you are a teacher), that you can request a complimentary "Get To Know Me" poster and lesson plan for elementary school-aged children.

The National Down Syndrome Society (NDSS) is offering these materials (free of charge) in an effort to raise awareness about Down syndrome and to promote inclusion.

The poster is 11x17 inches.  The lesson plan (for grades K-2 and 3-5) reinforces the inclusive message of the poster.

P.S.  If you're keeping track, then you'll know that I missed posting this on the actual day 7 of my challenge(s).  :(  My sister had surgery on Friday morning, I had what ended up being a looong appointment in the afternoon (2 1/2 hours, plus an additional 1 3/4 hours of travel time), and then I went straight to the hospital to visit my sister.  I arrived home at 10:30 pm...and sat in front of the computer for almost an hour, trying to compose a post.  It wasn't coming together...so at 11:30 pm, I went to bed.  Hence, it's actually Saturday, October 12th at 3:15 pm.  You don't mind that I changed the post date to Friday, do you?  ;-)

Words

In 2008, I received some materials from the Indiana Governor's Council for People with Disabilities (GCPD) in celebration of Disability Awareness Month in March.

Included in the package of materials was this bookmark.

The front says:

Attitude is Everything.

When you champion a winning attitude for yourself and your team, you can achieve anything.

The back says:

Choose Words Wisely.

1. Put people first.  Instead of saying "the blind boy," say "the boy who is blind."
2. Focus on what someone can do, not on what he can't do.
3. Say "my friend has a disability" rather than "my friend is handicapped."
4. Treat people equally.  Don't feel sorry for or go overboard in how you treat people with a disability just to make them "feel" better.
5. Give the person a chance to say something or to do an activity on his own.  Like you, he has ideas and talents to contribute.
6. Wait to offer help until someone is ready or asks for help.
7. It's okay to ask questions when you're unsure of what to do.

I can tell you that these truly are words of wisdom.  They make a difference.  :)

Especially important to me is the 1st statement.  I do a kind of "mental cringe" when someone refers to a child with Down syndrome as a "Down's kid."

I'd like to add something to the 5th statement.  Not only give the person a chance to say something, but also wait for the person to say something.  Often, T is slower than is typical when he responds.

And...the 6th statement is a big reminder to myself!  Too often, I find myself trying to help T when either he wants to try to do it without help or he is capable of doing it by himself.  :P

Trip to Holland

My guess is that most parents who have a child with special needs (and many others who don't) are familiar already with this essay by Emily Perl Kingsley.  I had neither heard of nor read the essay until after T was born.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

c1987 by Emily Perl Kingsley

When I was pregnant with T, the ladies from our chapel planned a baby shower for us.  However, the planned date of the shower was too close to my due date...and T was born before the shower occurred!  The baby shower was re-scheduled...and by that time, I was familiar with this essay.  It spoke to my heart in such a way that I shared it...read it to this group of ladies during the shower.

There is a post of a wonderful interview with Emily Perl Kingsley here.

Ellen of Love That Max blog sums up this March 2011 interview with these words:

Savor whatever experience you are fortunate enough to have.  Make the most of the hand you are dealt.  Try to find beauty in each day, if you can.

Buddy Walk History

While I'm on the subject of the Buddy Walk, I'd like to share some of its history with you.

The Buddy Walk program was established in 1995 and has become the premier advocacy event for Down syndrome in the United States.  It is also the world's most widely recognized public awareness program for the Down syndrome community.

These milestones show how the program has grown!

In 1995:

• Seventeen Buddy Walk events took place across the country.
• Chris Burke led the flagship New York City Buddy Walk.

In 1999:

• The Times Square video was introduced.

In 2001:

• A new Buddy Walk logo was introduced, the blue and yellow graphic of a family holding hands.
• More than 100 Buddy Walk events took place.

In 2003:

• More than 190 Buddy Walk events took place in 49 states and five countries with over 180,000 participants raising more than $2.5 million.

In 2004:

• More than 210 Buddy Walk events took place with over 200,000 participants raising more than $4.5 million.

In 2005:

• More than 250 Buddy Walk events took place with over 200,000 participants raising more than $5.5 million.

In 2008:

• The Buddy Walk public service announcement was played nationwide at all Regal Cinemas before every movie for two weeks to celebrate Down Syndrome Awareness Month and the Buddy Walk program.
• More than 250 Buddy Walk events took place with over 250,000 participants raising more than $10.5 million.

In 2009:

• The first Buddy Walk held on a military base in a combat zone took place at Camp Phoenix in Kabul, Afghanistan.

In 2011:

• The first Buddy Walk in Japan was held at Kadena Air Force Base in Okinawa.

In 2012:

• More than 250 Buddy Walk events took place with over 295,000 participants raising more than $11.75 million.
• The Buddy Walk has been ranked in the top 30 fundraising events nationwide for:  money raised, number of participants, and best series event since 2008.

source:  National Down Syndrome Society

These twin girls (holding the banner) are so funny and fun-loving...and were raised by their single mother who is totally deaf.  The word that comes to mind is fortitude.  It is wonderful to see how the members of this family help and support one another.

Buddy Walk

Yesterday, we attended (and my husband and T participated in) the Buddy Walk in our area.  (I cheered from the sidelines...having a bum foot and all.)

The starting point for the walk

Ready to walk

The printed program showed the event schedule.

It also showed the walk route.

We ate a hot dog lunch...with chips, soda, bottled water, cookies, and ice cream provided, too.

Waiting for Mama to finish eating

There was a band.  There were games and activities for the children.  There were dance school performances and Tae Kwon Do class demonstrations.

And...there were other activities not listed in the program...such as the 50/50 raffle. Raffle tickets were $1 each.  One winning ticket was drawn.  Of all the money collected, one half went to the Down Syndrome Family Alliance of Greenville and the other half went to the lucky ticket holder...who happened to be my husband!  :D  He walked away with $175.  Wow.  :)

At the end of the walk, every buddy received a medal and certificate!  :)

Proud of his medal...

And worn out

It was terrific to see so many of the families with whom we've developed friendships over the years.

What an enjoyable afternoon!  It was obvious that many people had put much time and great effort into the planning and preparation.

The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

source:  National Down Syndrome Society

Down Syndrome, Defined

I thought I would begin my 31 Days by posting the answer to a basic question:

What is Down syndrome, anyway??

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits.  These genes are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.  Down syndrome occurs when an individual has an extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.  A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.  However, each person with Down syndrome is a unique individual and might possess these characteristics to different degrees, or not at all.

source:  National Down Syndrome Society

In a pensive mood

T possesses some, but not all, of the common physical traits associated with Down syndrome.  He has low muscle tone and an upward slant to his eyes.  He does not have a single deep crease across the center of his palm or small stature.  (More on growth charts in a future post!)