Category Archives: A to Z Blogging Challenge 2014

Road Trip! – A to Z Blogging Challenge 

We LOVE a trip on The Road!
Who doesn’t?

Now that the furry of posts have slowed down, it’s time to visit more participants continue to meet new friends!  

Blog Roll from A to Z on The Road We’ve Shared


Reflections from The Road on the A to Z Blogging Challenge – Stephanie Holland

Reflections from The Road on the A to Z Blogging Challenge

I’m so excited that we not only completed our first official community project, but that we did it with such flair!  The A to Z Challenge was a chance for every- and any-one to share a piece of their own story and possibly reach a broader audience.  We are a very specialized community.  We tend to have a very specific audience – and that’s okay.  Occasionally, we get an opportunity to branch out and “expose ourselves” to people on the outside.  It’s a scary thought for some, for others it’s a welcome occasion to create awareness.  Either way – my motto remains: “If I can change one person’s mind, or help one person see that life with Down syndrome is NOT the tragedy that they think it is, then everything I do in the name of “awareness” is worth it.”   You never know how the ripples play out.
This is a collage of the pictures from participants in our challenge.  You tell me – do any of these wonderful people look like they’re “suffering from” Down syndrome?   (I don’t think so.)
In terms of the wider Challenge, I really enjoyed meeting people at the Twitter chats!  The moderators did a great job of posing interesting questions and keeping the chat going.  I also loved visiting new blogs that I wouldn’t normally have found.  The thing with concentrating on a very specific topic like ours is that we tend to read the same things.  It’s important to keep up with what’s relevant to our readers.  What I didn’t realize that so many other topics apply – in ways we wouldn’t necessarily think of.  I’ve made  a few discoveries that I’m sure I’ll continue to follow and I’m grateful to the Challenge for introducing me to them.  The only thing I would consider changing would be the topics list – directory of blogs.  I would like to see a little bit more information about what type of blog it is.  I’ll still visit random blogs, that’s part of the fun, but I’d also like to visit people whose interests are similar or who I think might be interested in reading my blog.  

Kudos to the organizers of the Challenge! and my own personal thanks to a fabulous community of people that I’m honored to be a part of for supporting this effort!

Writers that Participated:

Terri Saylor
Susan Holcombe
Dottie Saylor
Helen Royal
Maria Hailstorm
I think we got a perfect mix of personal stories and real advocacy issues in 26 posts!  Who’s ready for the book?  :D

Z is not the End - A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

Z is the 26th and last letter of the alphabet.  In the A to Z challenge this is the last post, but by no means is this an end.  In the month of April we have shared every letter of the alphabet, and although Z is the last letter of the alphabet it is not the last time we will use these letters.  A started with advocacy and this is where we begin again as we teach our children to advocate for themselves and write their own alphabet.

As a parent of a child with special needs I measured success by endings. Alex made it through kindergarten, and then we moved onto elementary school. Alex made it through middle school and despite many barriers Alex graduated from high school.

But these were not ends for Alex, her A to Z go on and on. Today she is in college and in three years another end will occur and a new beginning will happen. Alex will look for a job, a place to live and a community to call her own. And yet this will not be an end, perhaps she will find a meaningful relationship and then who knows….always new beginnings.

If you have not liked our page, it is a good way to stay on top of the ups and downs of college (and inclusive education) for a person with a development/intellectual disability. I have no idea what is going to happen….but I will share the good and the bad. Please click on “The Ordinary Life of an Extraordinary Girl” now 

Y is for Younger Sibling - A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

By: Marianne Marts

Marianne Marts 
Sister, Guardian, Author & Speaker

Younger sibling – what is it is like being a younger sibling?  Well let me set this up for you.  Joey is the oldest and he has DS, then there are 4 more brothers then me.  The one and only girl!  Now even though I am the youngest I have many older child tendencies due to Joey.   Being the only girl I naturally have the caregiver role, especially since I am the one of the 5 other sibs who has lived with Joey being at home with me my entire life.  Back east he lived in a private catholic boarding school and came home on weekends.   You may be thinking…what was life like?  Well it wasn’t all bad, in fact it was fairly good considering.   As I have been recently reflecting on my life and how Joey has added to and changed my behaviors as an adult are both good and bad depending on how you look at them.  

1st….I realized that as an adult I have a harder time making concrete decisions when deciding where to go out to eat or relax etc.  As a kid it was always easier to just go where it was going to be easier for Joey so he wouldn’t have a behavior.  As an adult the negative side to this is that is it really important for me to have my own interests and places that I enjoy being rather than assimilating my hubby’s or Joeys.  So I am trying now but it’s hard…

2nd….As a child I rarely ever had friends over.  Joey has/had lots of violent behaviors like hitting walls and breaking TVs.  So it was always easier to go to someone else’s house.  Only recently did I realize that my friends never really knew about Joey.  We celebrated Joey’s birthday this year and saw an old neighbor and school friend who came over to our table and we talked about old times.  I asked him if he remembered Joey and he said NO.  That just made my heart sink.  I began to question:  Was I ashamed, uneducated or just plain embarrassed or all the above?  I think it was all the above.  I didn’t know much about DS and didn’t know how to explain it to my friends and back then (Joey is 54) talking to your kids about the disability wasn’t really thought of.  Parents were just trying to survive with the limited resources as most were in the institutions and if you chose not to go that route you had to fight your way through things.  So I don’t blame my parents as they were uneducated as I was.  Now I can help change that.

3rd….Are we concerned for the future?  YES YES YES, just like you the parents if not more so!  You might be thinking in the back of your head will my kids be willing to take over care?  Should I ask or say something?  Whether you realize it or not, sibs carry the same stressors and concerns as parents.  We think what is going to happen when they are gone?  Will there be financial resources for me to help my sib?  What do I do about services?  And on and on…  Please don’t be afraid to bring the topic up…believe me we all have thought about it and ask if they want to be involved in the process.  The best thing my mom ever did was allow me to begin taking over slowly so I could get to know the required processes for Joey on an annual basis.  This is truly a blessing and very rare!  My goal is to change that!  Because it is not if something happens but when!  Are you ready?

So as younger sib I am fully involved into Joey’s life in all aspects.  First I am his sister, then his guardian and advocate, caregiver, friend and #1 supporter.  I have a proactive personality which may seem to rile people at times but I am ok with that.  Change does that and that is good!  My goal is to educate families on the sibling perspective and the need to be ready for the future.  Join Joey and I on  Facebook at JoeysUps and visit our website to see our book called Will YOU Be my Friend?  A book teaching a great anti-bully message that we are more alike than different!  www.joeysupswithdowns.com.  To contact me to speak, email me at joeysupswithdowns@gmail.com and subject it speaking.  Thanks for hearing “our” side.  Remember we are here for the long haul…are you ready?

X is for Xanadu (the movie) - A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

By: Stephanie Holland

Joshua LOVES his musicals…

In case you missed it – here’s the trailer for the movie that was released in 1980.

Josh loves to sing, and when he finds a musical with songs that he likes, he’ll watch it a zillion times.   In fact, when he heard me playing the videos trying to choose which one to use for this post he immediately got up and came into the room with “HEY! That’s from my tape! What’s Xanadu doing on you computer thing?”   (a little possessive maybe…)
To be fair – his all time favorites are Grease and Cry Baby.  He knows EVERY word, backward and forward.  He can sing all the songs, but still “talks” to the characters every time he watches:  ”There’s you girlfriend” or “No! Don’t go there!”  His sense of imagination and wonder never gets old.
Old, new, good, bad, classic or “how did this even get made?”  He loves them all.    As a matter of fact – today he’s got High School Musical on – AGAIN!
I wonder if the NEED to sing and dance / perform is located somewhere on the 21st chromosome?   Josh isn’t the only person with Down syndrome that I know who likes musicals…  (Right Marcus?) 
So if you ever need information on some obscure detail from any of the musicals in Josh’s repertoire – he’d be happy to help.  He’d also consider it a given that anyone casting the parts of “Cry Baby Rocker” or “Danny Zucko” would give him first consideration…  :D

In the meantime,  I’ll continue to enjoy the experience of Josh’s performances all by myself —  until the neon lights of Xanadu shine for my personal muse.

W IS FOR What Should Be said- A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

An answer to the prompt: What I should have said

When the mother picked up Amanda from preschool, a boy from her class marched up to her and said, “Amanda put on my coat today.”

“Well, that’s silly,” the mother replied.

“No, it’s not,” said the boy, “Now it’s got Down syndrome all over it.”

The mother’s mouth opened but her heart stopped any reply. The boy’s mother, standing nearby, shuffled him away. No further words spoken.

Of course the mother imagined this scene before; she lived it in her mind the day her beautiful girl was born and the words “Down syndrome” came from the doctor’s lips. She lived it the first day she took her daughter in public. She lived it the first time she took her  daughter to this new school and now… here in real life, it slapped her in the face. 

She turned around, went to the car, and cried. 

Amanda quietly asked, “Why are you crying?”

“Because I love you so much,” the mother replied. 

She will relive these moments again in her mind: as she drives, as she sleeps, as she walks. 

And I wish for her she can relive it with this reply:

 “Oh! So your coat now has Down syndrome all over it? Wow! That makes it a very special coat.” She would look at the boy and say, “Because with a coat like that no one is judged unfairly. That kind of coat wants everyone to be happy.” She would take a deep breath and continue, even if the boy squirmed and his mother still said nothing, “There will never be a coat that works as hard. Harder than you’ll ever have to work just to make a sentence. In fact, I think a coat with Down syndrome all over it makes the playground a better place, with more imagination and kindness and a completely different perspective on what’s important. This coat doesn’t bully or…
You know what?
You’re pretty lucky. There are many amazing surprises that come with a coat like that.”

Because this is what should be said.

V is for VALUE - A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

By: Karen Gregoire

I believe EVERYONE and EVERYTHING has VALUE if we’re willing to broaden our perspective, perhaps change our perception, or maybe look a little closer at our current point of view.

Here are some words that might come to mind when people are asked to define the word VALUE
Usefulness – Importance – Worth,
But maybe it’s time for society to alter their perspective and perceptions and define VALUE with words such as: 
Appreciate – Respect – Cherish.
 
Which has more value to you, a $100 bill or a $1 bill?  Most people would answer a $100 bill.  However, if you broaden your perspective and look for the value in everything, you’ll see that the $1.00 can be just as valuable.  Josh values “ones” since they have significant meaning in his life.  They’re a necessity in order to play his favorite card game, Scat.  Certainly one dollar bills can be accumulated and become hundreds, so who’s to say which point of view is the right one?  I’d suggest they both
should be valued no matter how vast their differences.   

Which possessions do you value more, a new car, a big house, an expensive vacation or things of little monetary value but make you
happy in their simplicity, perhaps a pet, for example?  I wonder if most would answer that accumulating expensive possessions has more value.  Josh values his swing and his collection of Celtic Thunder music on his IPod.  He values his 200 decks of cards and his Mardi Gras beads. 
He values his Full House DVD collection.  Who’s to say which possessions have more value?  It’s all in the way we choose to look at things.  
Which type of person do you value more, a person who is rich and powerful or people with an intellectual or development disability?  Most would say that the person with a lot of money and clout has more value to society.  However, Josh, even though he may be more vulnerable or even at a disadvantage because he has a lower IQ and may struggle at times to communicate his needs, wants, ideas, and dreams, HE IS the most compassionate, loving, nonjudgmental, clever, empathetic, entertaining person I’ve ever met.  He is a team player, willing to help anyone who asks and his presence here in our society simply makes the world a better place just by being himself.  It’s my perspective that HAPPY PEOPLE make the world a HAPPIER PLACE.  
As parents/caregivers of a person with a disability, it is vital that we are
vigilant advocates, not only for what our loved ones need to help them make their dreams come true, but also by continuing to educate society about how valuable our loved ones can be to our world. 

It is vital that we ask people to broaden their perspective and perceptions to include VALUING ALL PEOPLE for their contributions to the world we live in.  Even more importantly, it is imperative that we teach our loved ones that they deserve to be valued, remembering to always show them the respect they deserve by valuing their personal opinions and feelings.  

When we, as a society, broaden our perspectives and widen the path of our perceptions to value all people for who they are, we all surely help individuals with I/DD to be victorious in their pursuit of happiness. 
 
I never knew how important it was to value such simple yet powerful things in my life, until Josh came along nearly 19 years ago. 
Here are some ways people can change their perspective, perception and point of view about what it means to VALUE people who have an intellectual or developmental disability, like Josh, who really have more similarities than differences:  To know Josh, and those like him, is to adore them, commend them, delight in them, respect
them, credit them, appreciate them, treasure them, love them, and VALUE them!  

Josh certainly has changed my perspective!  Has he changed yours?
“The idea that some lives matter less is the root of all that’s wrong with
the world.” – Dr. Paul Farmer

U is for Understanding and Unfunded Mandates - A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

By: Stephanie Holland

This is my last scheduled post for the Challenge.  It’s been GREAT and I’d like to thank ALL who participated!

I struggled with what I wanted to do for this post.  There were two main ideas that I wanted to address, and since I couldn’t decide on one – here’s both!  Thanks again to EVERYONE who has helped make this month such a success!!!  

Understanding

One way we try to get a better understanding of something we’re not familiar with is to read books.  As parents, we look for books to give our children to help them understand others who might be different from them.  On “The Road We’ve Shared”, one of the resources we provide is an electronic evaluation tool for children’s literature.  It was designed as part of a graduate thesis in Disability Studies.   It can be used by parents and educators to determine whether books that introduce Down syndrome to children and young adults are appropriate.  
The tool looks at eight major areas:

  • Reading / developmental level
  • Literary standards
  • Accuracy of information
  • Illustrations / photographs
  • Language
  • Stereotypes
  • Acceptance and understanding
  • Inclusion

Eventually, we hope to establish a library of reviews on file so that people can see what others think about books that are available.

We also provide a list of over 100 books for children and young adults.


Unfunded Mandates

From Wikipedia (Emphasis mine)

“In the United States, unfunded federal mandates are orders that induce “responsibility, action, procedure or anything else that is imposed by constitutional, administrative, executive, or judicial action” for state and local governments and/or the private sector.

An unfunded mandate is a statute or regulation that requires a state or local government to perform certain actions, with no money provided for fulfilling the requirements. Public individuals or organizations can also be required to fulfill public mandates.

As of 1992, there were 172 federal mandates that obligated state or local governments to fund programs to some extent. [Including]

Civil Rights Act of 1957
Civil Rights Act of 1964,
Voting Rights Act of 1965
Americans with Disabilities Act
Medicaid.

Obviously all of these are important pieces of legislation.  They provide the structure for fair treatment of people who are disadvantaged by society.  
Unfortunately, when they don’t come with federal dollars attached, the results are often slow, uneven implementation with a wide variety of success.   Even when there are participation grants involved (states get monies for adhering to policy like with IDEA) the fact remains that each individual state is responsible for developing a plan.  On one hand this is good, we wouldn’t want all of the programs to be based on a particularly bad model.  On the other hand, this ends up being the source of further discrimination and uneven opportunities.  One need only look to the Medicaid “waiver” issue and the disparity among services provided from state to state, or the wait lists that exist in some states that exclude many people from services all together sometimes for many years. 

The movement to do away with sheltered workshop environments threatens to become another “unfunded mandate.” I think we can all agree that there is not enough money to accomplish everything we’d like to see at one time.   Wherever the money comes from – federal, state, public or private enterprises – it needs to be spent wisely.  Parents, self-advocates, and caregivers need to be in on the discussion about how to proceed.  New, unique approaches that focus on the individuals need to be discovered and put into place.

T IS FOR Truth- A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

Truth changes like clay in the hands of its master. 

“In childhood, I witnessed my grandfather’s truth about
skin color, faith and fear. I waded through my mother’s denial and each truth it bore. Pluto was a planet and the brontosaurus my favorite dinosaur.” The truth is malleable.
 
The truth is my son has 47 chromosomes and I live with 46. Chances are you do, too. The truth is, you and I don’t know what it’s like to have 47 chromosomes. What does that feel like? 

Picture

The truth is people born with 47 chromosomes have been locked away, left alone, and then died in voids of confusion and loneliness throughout history and throughout the world. The truth is 47 chromosomes does  not preclude a human from learning, from feeling, from reaching for more. Other humans, however… 
 
The truth is science can see this trisomy before a mother can even feel her child developing. The truth is science cannot see possibility. Science cannot tell the future. The truth is neither can you or I.
 
The truth is I need help in order to facilitate my son’s reach toward his potential. And worth is a variable truth. The truth is he has dreams for his future, do you have dreams for yours? 
 
The truth is his existence, his genetic structure, is considered by some a mutation of humanity. He is hated by trolls for merely living. The truth is he is no less human, no less worthy of love and respect and a chance, than any other. 

The truth is the future sometimes scares me. The truth is I also have hope. I know what it’s like to feel a love so overwhelming its presence frightened me and now I can’t imagine life without this love. And that is where my truth begins and ends.