A is for Advocacy – A to Z Blogging Challenge on The Road We’ve Shared


ADVOCACY

That’s a REALLY big word!

Advocacy is a word that means different things to different people.  As the organizer of this A to Z challenge, I thought it would be a good place to start us off on this particular section of The Road – a month long alphabetical celebration of OUR STORIES!
Picture

Picture

Images

In our community there are lots of symbols that we use to express our advocacy – the blue and yellow ribbon, and the “Lots of Socks” campaign that the World Down Syndrome Day organization uses are two of the most well known.

There’s debate among advocates about what these symbols say to those outside of our community, and whether they, in conjunction with pictures and /or positive stories, help or hurt the cause of “social justice.”   In my humble opinion, one thing that these symbols, pictures, and stories do is show solidarity.  There are some days, for all of us, that just seeing them helps.  They let us know that we’re not alone.

Awareness

Another “A” word that sparks discussion in our community is Awareness.   The debate goes something like this: How close are awareness and advocacy linked?  Does promoting awareness lead to change, or is it just a way for us to feel good about ourselves?

Thoughts

I don’t have the answer to these questions.  I can only share my perspective and how I look at things:
Change is slow – in order for it to happen, we need to keep having the difficult conversations.

Support is important – and often overlooked.  The main purpose of “community” is to come together around a specific area of interest.  Whatever we don’t agree on (and there is a LOT) the one thing we have in common is the love of someone who has Down syndrome.   We’re all trying to do our best.

Voice is key – and should include everyone.   As I write, talk, tweet, blog, or post, I’m telling my own story.  As a parent, it’s a story of love and caregiving.  Each parent’s story is unique and has value.  If we want to help the world what it’s like to be a person who has Down syndrome, we have to sit back and let our loved ones do the talking.  I share my story, and my memories, and I also try to share my son’s own words whenever possible.  For those who have trouble communicating with words, maybe there are other ways.  Josh tends to express himself with his clothes/wigs/accessories.  Pictures help him show the world how he sees himself.

Advocacy is…

I’m not here to define advocacy for you.  We all do it everyday.  How we do it is as different as we are.  Each path to advocacy is important.  My hope is that we can all learn to accept each other, just as we teach the world to accept our loved ones who have Down syndrome.

Let’s lead the world in advocacy by example – real inclusion and acceptance of all opinions, differences, and perspectives.

How do you define advocacy?  Do you know someone who has difficulty expressing themselves with words?  What are some other ways you could share their story?  



YAY! All Letters are claimed!

Thanks to EVERYONE who stepped up and claimed a letter in our A to Z Blogging Challenge!  

I’m SO excited that we have so many different perspectives and voices that will be heard throughout the month!  

Each post will include a picture of the featured letter and it will link to the official Challenge page.  Be sure to stop by some of the other blogs that are participating and show them some love too.   I’ve started getting to know some of them already and there’s LOTS to learn out there!  At last check there were 1848 blogs signed up!  

We’ll also be including the contact info for each individual writer if they have a blog / Facebook page, etc. so you can “Like” them if you’re so inclined.  

This is going to be a GREAT time!   Woo hoo!!

(P.S. – if you didn’t get a letter and REALLY want to be included, please let me know – I’ll figure something out.  Don’t want anyone who wants to be included to feel left out)   😀

More than a story – a whole book!

Picture

Today we are sharing this story from Gary Bender who answers her own question:
Did I really write a book?

 I started our blog,
The Ordinary Life of an Extraordinary  Girl on August 26, 2009 with the following introduction, “Today  I decided I wanted to chronicle the life of Alex, a 16 year old high school sophomore with Down syndrome. I am hoping to share the triumphs and challenges of raising this remarkable daughter. I choose today to start because it is her third day of school and the first day of football practice. I plan to finish this narrative at the end of July 2010, which coincides with the conclusion of the National Special Olympics in Lincoln, NE where Alex will be representing the state of Colorado in track and field”

I immediately became hooked on writing and almost 550 posts and a book later I still love writing and blogging about Alex.

During the first year of blogging I began to realize I had a story to share. Alex is now 20 and a freshman in college. This did not happen by itself but was the culmination of years of advocacy and outright battles. But all along the way we honored Alex and her dreams for her future. We tried to create an environment where she could succeed and out of that took an unanticipated journey through the many systems that are in place. We traveled through the medical, educational, and state and local funding systems. We learned that was not enough, today’s systems are antiquated and do not meet the needs of this generation of children. As we followed in the footsteps of others who navigated and worked to improve the systems and we created our own footsteps between and around the systems and honored the work of so many past parents.


We share our journey in verbs.


Click to

Picture



From  Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome
is organized
according to a list of verbs that has defined our experience. As the title suggests, the verbs begin with “Grief” and culminate in “Celebration.” The verbs numbered from 1-10 plus the bonus, are relatable to parenting and, frankly, life in general. There are a lot of great reviews here.

I often wonder what possessed me to think I could write a book or even why I would want to write a book.

A book is an investment in time, money and ego, all of which have been impacted by sharing our story in such a public forum. I wrote the draft using excerpts from the blog and hired a professional editor. I was foolish enough to send the manuscript out to a few publishers, all who rejected it with a nice letter about “receiving hundreds of submissions” so I self-published.

Despite the rejections and the start-up costs ($3,000) the reviews have been amazing and I do not regret this decision at all. I do have a
story to share, one of hope and celebration and if I can help new families learn that their futures are bright I will feel fulfilled.


You can find Alex and Gary on the blog: The Ordinary Life of an Extraordinary Girl. Also on Facebook and Twitter.  We are delighted she has shared the story about choosing to share her story! Of course, the best part is that we will continue to hear from Gary about their journey in the months to come.

WORLD DOWN SYNDROME DAY 2014

We hope you all enjoy the video tribute we put together of all our friends on this special day.  Disclaimer:  All of these pictures were shared with us on Josh’s Facebook page and because we have sooooo many friends, the video is just a bit over ELEVEN MINUTES LONG!  🙂

Although WE, Josh’s family, celebrates Down syndrome 365 days a year, today is a special day to recognize everyone as a group. 

We are creating awareness that people with developmental and intellectual disabilities can lead happy, fulfilling lives surrounded by family, friends, classmates, and coworkers. 

All of us at Just Joshin’ Ya truly believe that by creating awareness, just by doing your thing day to day, it really does lead to acceptance for individuals with DD/ID.  We are strong believers that creating awareness leads to acceptance, which ultimately leads to inclusion! 

We’re working hard and making great strides!  Keep on keepin’ on!  We send all of you lots of LOVE today and every day!

Without further adieu:  Here is the video! 

Time is Running Out!

We’re getting down to the wire! 

Time for Bloggers on The Road We've Shared

April is almost here and we still have a few letters left that NEED to be claimed!

If you’ve been thinking about writing for our month of alphabetical posts and haven’t picked a letter – please let us know!

We still have:

A, D, I, J, L, N, O, P, Q, X, Y, and z

The piece doesn’t have to be fancy.   Some of the best posts are simple stories and a picture that tells a little something about someone you love.  It also doesn’t have to be long.   If you need help, putting it together or editing –  we gotcha covered!  

Let’s really ROCK this and show the world that we’re here!  After all of the excitement this week for WDSD14 I KNOW the stories and great photographs are out there………   


I need your help to make this a really great event!

21 for 3/21 (WDSD 2014)

It’s a GREAT day!

Today has been so exciting and energizing!  I’ve participated in the 321 eConference, and listened to Dr. Capone address the United Nations !  I’ve only begun to look through all the fabulous pictures and blog posts celebrating “designer genes” that have been shared online.  Josh and I have danced to “I’m Happy” several times already today.  And it’s only just begun!

How COOL is that!

Josh helped pick out these pictures and was “too proud with me” about sharing them for WDSD.  He kept saying – “Look at us!”  with a big ol’ grin on his face.   

Indeed – look at us!   The road may not have been easy, and hopefully there’s a lot more to it!  We’ll keep working and sharing, not just for our family and friends, but for anyone who will listen.  We love each other – we’re happy – and we’re grateful for the friends we’ve made along the way!

Happy World Down Syndrome Day!  #WDSD14

REFLECTING ON ANOTHER YEAR

I’m sure you all know by now that Josh’s favorite singing group is Celtic Thunder, right?!?!?  Well, if you didn’t, you do now.  🙂

One year ago tomorrow THIS happened:
  
Josh’s Mom (Karen),
Your Tweet got a reply!

@GDonaldsonCT @RyanKellyMusic @neilbyrne_CT @laursadurrant
@DeclanODonoghue 
It’s World Down Syndrome Day ~ A RT for Josh, your biggest fan?

George Donaldson  @GDonaldsonCT
Hey Josh Hello from Glasgow, hope ur having a good day
02:55 PM – 21 Mar 13

When I showed Josh this Tweet from George, he and I were jumping around with excitement!!  ”George sent you a message” I kept exclaiming OVER and OVER, like a crazy woman!  You have to know that none of the guys, that I have ever seen, have directly Tweeted to a fan (maybe they have and I just want to believe we meant something extra special to George).  They will retweet, but I’ve never seen any of them REPLY to a Tweet!  What a GREAT day it was on 3/21/2013!  Josh and I both felt very, very special by George’s gesture!

THIS YEAR, on March 13th, 2014, George passed away suddenly and unexpectedly at the age of 46 (leaving behind his wife Carrie and his 13 year old daughter, Sarah) ~ the light of his life, as he would describe them! 

George’s untimely death also left Josh (and mom) very saddened at the thought of never again getting to meet him in person, as we had so many times before.  George was a class act with a heart and soul made of gold, always willing to spend that extra time needed to make Josh feel appreciated.  The thought of never being in his presence again, never getting to experience his talent live and to never again be able to see and hear him on any new Celtic Thunder DVDs or CDs has been quite overwhelming to both of us! ~ (As you all know, if you follow Josh’s stories, Celtic Thunder DVDs and CDs are like GOLD to Josh!!)  

What a difference a year can make!  :(  George brought us so much happiness and joy.  I’m not at all convinced that their shows will ever be the same without The Big G there to wave at, wink at and high-five Josh, but we’ll keep an open mind!  We do know, for sure, that he is entertaining everyone in heaven with that huge George Donaldson smile, lovely voice and his guitar! 

There are remarkable things that happened to Josh this year, good and bad.  He learned to grieve for someone he loved, someone who was a part of Josh’s daily routine for seven years, even if it were only through his TV and IPod! 

Other than George’s passing, Josh has had a year of great strides in independent living, friendships, building vocational skills, and an all around good year filled with making us laugh and amazing us with something new nearly every day, as seen by the stories we share on his Facebook page, Just Joshin’ Ya!  

As we reflect on the past year and prepare to celebrate World Down Syndrome Day (tomorrow) 3/21/2014, it’s important to remember that the world and everything in it is in a constant state of flux.  Things can certainly go from fantastic to really bad in a split second, like the day we learned of George’s passing; however, the reverse is true, as well.  Things can go from really awful to just outrageously great in a short period of time.  

Since the day Josh arrived on the scene nearly 19 years ago, for us, it has always been about being positive, not burning bridges that you might need to walk on someday, not approaching people with a finger in their face and demanding this or that for your kid, not letting other’s negative opinions sway your opinions, and most importantly remembering that it always takes way less energy to be POSITIVE. 

That’s how we have chosen to live our lives with Josh.  I’m not, in any way, saying we don’t have bad days, because we do, but WE ALWAYS look for the bright side, even in the crappy situations.  Always looking at everyone’s point of view, putting yourself in their shoes……it just helps you gain perspective, looking at things from all angles.  For us, there really isn’t any point, whatsoever, in putting people on the defensive by demanding what they will and won’t do regarding the services Josh needs/needed, since we will likely have to work with these people, as a TEAM, for what seems a lifetime.  

My message to you on this WORLD DOWN SYNDROME DAY 2014 is to remain positive in everything you do during your advocacy.  Remember to check in with your kid/loved one, no matter how old they are and ask them if they’re happy with what they’re doing, respect them enough to believe the answer they give you and not just assume that they “don’t really understand what we’re talking about”, take a step back when needed, refocus, and remain positive.  It really and truly will make things so much easier!  

We really have come so very far on the #DsRoad in our advocacy for and societal perceptions of people with developmental and intellectual disabilities.  History proves this to be true.  This, of course, doesn’t mean we don’t still have work to do, but we have come a long way from the day when Josh was born almost 19 years ago and referred to as a Mongoloid (see last year’s post 3/21/2013 for those details). 

The world is EVER-CHANGING and it’s because WE, together, collectively, have used our positive energy to make changes.  No matter how big or how small the changes are, it’s working, so never give up and KEEP MOVING FORWARD. 

Happy WORLD DOWN SYNDROME DAY to each and every one of you who are driving on this road that we’re sharing!  Whether you’ve paved the way before us, are traveling in our path, or making your own new road, we are doing this TOGETHER, striving to make one positive change at a time AS WE MOVE INTO ANOTHER YEAR on The Road.

Flipping Awareness

The other side of awareness

Today’s guest post in honor of WDSD comes from Susan Holcombe – mother of Rion.

In preparation for all of the “awareness” discussions that would be happening this week, I asked for stories that flip our usual assumptions:  

Awareness is about helping people who aren’t exposed to Ds gain a better understanding.

I was looking for stories about our adult children and when they expressed an “awareness” of their diagnosis.   Thanks so much to Susan for sharing Rion’s story with us!

When Rion Told Me He Had Down syndrome

For three years, we hosted a “tweens” bible study group in our home every other Friday.  My daughter was in middle school and Rion was 15 at the time.  The group of kids that convened at our home included my daughter’s friend, Josh, who has a form of dwarfism that has resulted in him being only 25 inches tall.  At school Josh would use a wheelchair to get around, but in our home he would either be carried by his younger sister or he would scoot and roll.  Walking was too painful for him.  Because of his size, my son Rion, assumed he was a toddler.  
The first few times Josh visited our home, Rion would want to hug him and talk to him in that sweet voice you use to speak to a baby.  This annoyed Josh to no end, I am sure.  He was a typical 14 year-old boy that did not want to be hugged by another boy or praised as if he was a small child.  At one point, when Josh wanted to climb into a kitchen chair, Rion kept asking if he could help him.  He really didn’t want help, adamant that he could manage.  I remember Rion watching him climb up and, clapping, he said, “Good boy!  Good job!  You are such a BIG boy!   I’m so proud of you!”  After they had eaten and dispersed, Rion remained in the room with me.  I sat down and explained to Rion that Josh wasn’t a baby.  He was a regular 14 year-old boy;  he was just smaller than others.  I explained how, like other 14 year-old boys, he didn’t want to be cuddled by another boy his age……..maybe a GIRL his age though!  I said, “He is just like all of the other boys in the group, thinks like them, likes the same things, has the same interests, he is just small in size.”  
I wasn’t sure how much of this Rion understood until he smiled at me and said, “Oh, like I have Down Syndrome!”  I was stunned, and filled with this warm fuzziness that made me feel suddenly light as a feather.  I had never told Rion he has Down’s syndrome.  It wasn’t that I was hiding the fact, I just didn’t think it mattered.  I am very open with my children about everything, and if he ever had a question I would answer it.  I felt there was no reason to tell him he is different if he didn’t think he was different.  After all, having Down syndrome isn’t his defining characteristic.
To Rion, having Down’s syndrome is equal to having blonde hair, blue eyes, glasses, etc……but he is so many more things than a person with DS.  He is a remarkable athlete, a busboy at a local diner, a fundraiser, a friend to many, a loving grandson, the family comedian, a baseball player, a basketball player, an accomplished competitive swimmer, a loyal big brother, and a future college student, a Clemson Tiger no less!  
Since that day, every time he sees someone with DS, he recognizes them right away.  He says, “Hey Mom, he looks like me!  He has Down’s syndrome too.”  Then he introduces himself.  And if you have never seen two people with Down’s syndrome meet, they instantly hug as if they have known one another forever. 

Professionals listening to a parents perspective

In March 2014 the theme on The Road was stories. In this post, originally shared 3/19, Mardra shared a few of the stories she shared with professional service providers who work with developmentally delayed adults. 

Speaking of Stories…

Picture

I’m sharing the mugshot, I mean headshot, because today I had the pleasure of being a professional parent.  

A group of professionals who are part of an organization that provides a variety of services for adults with developmental disabilities: housing, vocational resources, work environment, and day centers. Listened to me regale them with  facets from my own story as well as answers from other parents of adult children. 

They asked me to address “Team meetings.” So I started with this picture…



Picture

Marcus at a few months old. Isn’t he cute?!?

By the time Marcus was this age, he was already “in school.” When Marcus was born, those 23 + years ago, Nebraska was one of only 5 states that offered early childhood education for those with special needs all the way from birth.  Pretty awesome! But also, that means that I have been involved with IEPs and “Team Meetings” for over 20 years. My first meeting with a group of professionals and educators I had to advocate for the needs of my son in an intimidating environment that affected every meeting (for me) thereafter – and I wasn’t even old enough to go to the bar after for a drink. And trust me, IEP meetings can make a person want to drink!

Another experience I shared was when Marcus was in a transition program, preparing him with life and employment skills. 

Marcus and I went to lunch before a team meeting; I explained to him we were going to a meeting to talk about where he should get a job after school.  We talked about a few options for his preference. I mentioned one path -we’ll call it plan A – that the program seemed to be steering him towards.  He said, “No.”

“Okay,” I said, “Why not?”

“Horrible,” he said.

Oh. Well, that’s that then.

So, when we sat in the meeting, the folks talked about Marcus and how great he is (of course) and vocational plans came to the table. They mentioned plan A, I turned to Marcus and asked again, “Marcus, what about (Plan A)?”

“Horrible.” he said again.

The looks of surprise that came from the team said everything I suspected – no one had asked Marcus this before.

Marcus is polite and compliant. He wants to be helpful and he wants to make folks happy and keep life smooth. But he has an opinion. and if asked, he will tell you.

So my plea to the folks today was: Be sure you are asking. not only the families, but also the person most affected by these plans.  (Now, to the credit of Marcus’ transition team, there was no attempt to convince him of Plan A. The idea was immediately scrapped and new options were pursued.)

These were two of the stories I asked this team of professionals to consider.  I yammered for about 45 minutes and they were kind enough to nod and laugh at the appropriate parts. I am appreciative that this service center asked me to share if nothing more than to serve as a reminder that parents are people too!

The CEO thanked me for being brave enough to speak in this environment. The fact is – as it always is – personal stories is what changes people’s minds. So – Tell. Your. Story.

If you don’t know where to begin - check out these tips we shared at the 321 conference in March.  And remember,  here at The Road, we’re ready to help you share!


COGNITIVE ENHANCEMENT: PERCEPTIONS AMONG PARENTS OF CHILDREN WITH DISABILITIES

Natalie Ball  &  Gregor Wolbring   –  2012
This study was conducted as part of an undergraduate honors thesis project by students at the University of Calgary.  

Participants were 12 parents – 6 with children who had intellectual disability (CD) – 6 who did not (ND) and whose children were between the ages of 3-9

6 THEMES EMERGED FROM THE INTERVIEWS:

MEANINGS OF HEALTH AND TREATMENT

Parents were more likely to accept cognitive enhancements (CE) as a form of “treatment” rather than “enhancement” – even without diagnosed “disability.”   It was more acceptable for enhancements to be given to someone with “below average” intelligence in order to make them more “normal” than it was to give them to children with average intelligence to make them ‘above average.’  It was also more accepted if a child was “struggling.”  Prescriptions and surgical treatments were especially considered to be treatments (of a medical nature).  Natural products and devices were more acceptable for ND children because they were considered to be less risk of harm.  Some considered self-esteem and overall well-being to be a component of health and therefore accepted CE in particular situations.

ROLE OF MEDICINE

Parents expressed concern over self-diagnosis and medicating.  Concern was also presented about strict guidelines as to who “qualified” for CE and who did not.  Parents did not want children to be subjected to unwanted interventions or unable to obtain CE because of criteria set on broad definitions of disability.  Both groups expressed a desire to have CE used in conjunction with physician supervision and extensive research.

HARM

Generally the first consideration of all parents interviewed.  Considerable risk were considered to be associated with all types of CE.  Parents of CD children were able to provide more concrete examples of harm associated with pharmaceuticals than parents of ND children because they had either more firsthand experience or had previously considered the option.

THE “GOOD” PARENT

Parents from both groups expressed that the choice should not be made based on pressure from other parents or social norms.   One of the differences between parents of ND children and children with CD was that parents of children with CD noted the possibility of being forced into using pharmaceuticals because of the current state of health care and lack of support for using alternative, more desirable, methods.

NORMALITY & SELF-PERCEPTION

Some of the parents were attracted to CE products in order to their child feel more normal, because the real or perceived abnormality was harming their child emotionally or socially.  However, parents found it hard to strike a balance between achieving normality while still encouraging their child to accept themselves for who they were.  Both groups of participants expressed worry that encouraging their child to take CE products would leave their child feeling ‘broken’ or incomplete as a person, even when the intention of the products was to mitigate their child’s suffering.

ABILITY

Parents noted that the consequences of below-average ability include: “low self-confidence, limited opportunities, and social isolation.”   The cognitive ability – in and of itself – was not important.   What was important to the parents was outcomes – being able to “fit in,” and for parent of children with CD, being able to communicate, “cope,” learn, gain independence, and function on a day-to-day basis without struggling.  “Natural” abilities were more desirable.   Only the parents of children with CD discussed more “fundamental” abilities such as being able to communicate, learn, and cope with everyday life.

DISCUSSION / CONCLUSIONS

“Parents were generally hesitant toward their children using CE products.  They related this hesitancy to issues of disability, harm, confidence, competitiveness, and acceptance from peers, parents, and self.”  

“Parents viewed themselves as being responsible for avoiding harm in their child’s life wherever possible and risking harm for their child for the purposes of CE was seen as unacceptable to all participants in this study.”

Compared to other studies, parents in this one were more concerned with changes in identity of the child that came from a perceived message they would be sending by encouraging or forcing their children to use CE products in order to be “loved, happy, successful and complete.”

There were more similarities than differences between the parent groups.  One important difference was that parents of children with a CD were able to give concrete examples, not hypothetical stories, of what it is like to see your child struggle and firsthand experience with pharmaceutical interventions.  They also:  “expressed that the way society was structured often worked against their child because of their ability differences, and as a result, sometimes they felt desperate and used approaches that they may not have even considered previously.”

For purposes of this study, CE was defined as interventions that would create “above average” results.   Parents on the other hand continuously referred to the interventions as being disability based and used to mitigate struggle.  Using CE products for children who did not have a disability or disease was unacceptable because they could: “damage a child’s self-esteem, run the risk of putting the child’s physical health in jeopardy, and/or perpetuate unhealthy levels of cognitive competition between children.”

Products not marketed as being medical treatments would be more popular. 

Results suggest that parents who push their children to use these products will be stigmatized by other parents who view them as “being too preoccupied with outward appearance, overly competitive, and failing to care properly for their child.”  This is multiplied for the use of CE when children have less autonomy (as the case with children who have a disability) and brings up the issue of CE products being used in secrecy.  

Parents in this study suggested that they would rely on physicians to know the risks and benefits of these products and be able to monitor their use.  Physicians have reported in the past that they may not feel comfortable with prescribing these products because of the lack of available information – scope of their practice.

Terms such as ethics, or ethical treatment were not used once by participants in this study.  The only reference made to moral decisions was made in reference to not judging parents who use the products.

Researchers talked about the future of CE products and more wide-spread use.  Implications including the idea that use by “typical” children to obtain above average intelligence may negatively affect people with CD, creating further stigmatization and competition for services.  

JOIN THE DISCUSSION

Don’t forget to go back to our “Research Forum” and tell us what you think about this study.

The online community by and for parents and caregivers of adults who have Down syndrome