Category Archives: Advocacy

Christian continues to learn as he teaches others

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Christian Royal has a gift.  His pottery is beautiful and functional.  It has the hallmark of true artistry, a unique look that expresses what he wants to say about the world around him, his Charleston, SC home.   His passion and attention to detail is obvious in his work which is currently being sold in seven stores near his home and will soon be available on-line.  Christian’s story is one of an artist who is experiencing recognition, respect, and the beginning of a profitable career as a craftsman.  It’s a story that many artists, young and old, would envy: the ability to recognize your gift and use it to create art that people enjoy and want to buy, collect, and share.  Like everyone else, there is more to Christian’s story than what he does for a living.  There’s the story of his family, his geographic location, his hobbies, friends, and life experiences.   There’s also the fact that he happens to have Down syndrome.

I had the opportunity to speak to Christian’s mother, Helen Royal, recently.  We immediately bonded over shared experiences.  Talking to her was like talking to a friend I’ve know for years.  Helen identifies as a “storyteller” for good reason.  For one, she’s an excellent communicator and has a brilliant sense of humor.   Most importantly though, is that Helen has a compelling story to tell.  She hopes that by sharing her story about helping her son find his passion she’ll inspire the rest of us to keep looking and not give up, no matter what the “professionals” tell us.  

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Christian spent many of his school years labeled as “trainable.”  It’s a word I’m more than familiar with.  It still sends shivers up my spine to hear it used in reference to any child.   In the context of special education, it basically means (to untrained parents at least) that the child is beyond hope of learning to read, write, or do arithmetic.  A wonderful documentary film about Christian’s work “In The Potter’s Hands,” was produced by Joni and Friends, and it won a Telly Award for excellence in broadcast and web media in 2012.  In the film, Helen describes how the “trainable” label and limited educational options prompted her and her husband, Mike, to remove Christian from public schools and attempt homeschooling.  Their decision was not made lightly or without trepidation.  It proved to be a turning point in Christian’s story. 

While looking for ways for Christian to have a balanced experience with homeschool, Helen sought the advice of a trusted friend.  The friend suggested pottery, and the rest, as they say “is history.”  Christian’s interest and passion was recognized by his teacher and family right away.  Since the Royals were not experienced potters themselves, developing Christian’s interest and skill meant yet another learning curve for his parents.  Unlike the endless cycle of new topics that we as parents of children who have special needs are forced to learn and become fluent in (diagnoses, labels, therapies, education rules, benefit and legal options, etc.), this was something fun!  Through a combination of dedicated support and the uncanny luck of finding and cultivating the right relationships, the Royals followed their son.  They made the road available to him, and now he leads them where his creativity wants to go.  It’s a truly remarkable tale of family, support, love, and faith in every person’s ability to make a difference in the world.

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The benefits of Christian’s pottery are not just limited to the aesthetic appeal of his work.  Christian now has a meaningful purpose in his life which has given him a new self-confidence and desire to communicate with others.  As Helen points out, it’s a beautiful thing to discover your “niche” in life and in your community.  Christian continues to grow and learn, even as a young adult.  He’s recently even started sight recognition of letters and word sounds.  (Contrary to what we were told when our children were young, Christian has not yet reached the “plateau” of academic learning.)  Opportunity and support continue to make a difference in his life. With his parent’s help, Christian is teaching us so many things about life, the power of dedicated support, and never underestimating human potential.

As Christian educates and inspires us, his parents reach out to help others as well.  Helen talked about projects and individuals that she supports like the young woman who makes beautiful scarves, and a community (http://www.coventryreserve.org/) that is being created to support adults who have Down syndrome and their aging parents.  Even the little things like allowing people to “see how much I love him” have an impact on attitudes.  We all have a story to tell and an opportunity to change the assumptions made about Down syndrome.  What I learned from my new friend is that everyone deserves the chance to find that something that they love to do.  Don’t settle for less and don’t give up looking.

The stories here deserve to be shared and I thank IDSC for the opportunity to hear them!

To see Christian’s pottery visit his website:  http://christianroyalpottery.com/

He’s also on Facebook (http://christianroyalpottery.com/ ) and Pinterest (http://www.pinterest.com/source/christianroyalpottery.com/).

You can watch the documentary about his pottery at the Joni and Friends (http://www.joniandfriends.org/television/christian-royal-potters-hands/) website.


More than a story – a whole book!

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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

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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.

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…

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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…



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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!


JOSH IS DRIVING

I don’t have any one story that pops into my mind that I can share with you about Josh.  Specifically, because I share daily stories about his life on his Facebook page, Just Joshin’ Ya, so it would seem that I’m all storied-out, OR NOT! 

As of late, I’ve begun to realize that Josh has started to take over the driving responsibilities “on his own road”; whereas, once upon a time, dad and I were driving and it was our road.  Josh is currently most definitely taking the wheel from us, slow but sure.  The transition HAS begun, whether I like it or not, and I hadn’t even realized it until this last month when Josh was sick with a bug after a bug after another bug.

During the month of February right into March, so many amazing things happened in the face of him being sick.  February 7th, Josh, dad and myself headed on over to Josh’s school to meet with the rest of the team to develop his IEP for the coming year.  He voiced lots of opinions, more than in any other year.  When we left the 2 hour meeting, we stopped to get a quick lunch and headed home to eat.  Within 30 minutes, he was vomiting and other things followed shortly after that.  No need to be descriptive, you get the picture.

THIS IS WHEN JOSH STARTED TO TAKE THE WHEEL FROM ME AND DAD, LEAVING OUR ROAD AND DRIVING OFF ONTO A NEW ROAD THAT HE HAD JUST DISCOVERED FOR HIMSELF!!! 

I begged and pleaded with Josh to sleep upstairs in the spare bedroom right next to ours, but he flat-out refused and insisted on sleeping in his apartment (in the basement).  I was so worried.  What if he has to vomit again?  What if he can’t make it to the sink/toilet?  How will he come and get me if he needs me while he is getting sick?  What if he this, what if he that?  He just kept reassuring me…..”mom, I’ll be fine” AND he was!!  He made it through the entire intestinal bug without much, if any, help from us.  How very sad?!?  How very wonderful?!?  Such mixed emotions for me.  The question of……how would he take care of himself if he was sick and lived on his own……was answered without a single doubt left in my mind.  Josh answered that question loud and clear!

Throughout the rest of February and into March, he continued to be sick on and off.  He would recover from one bug and catch another.  This past week, his symptoms flared again and we brought him to see his ear, nose and throat doctor who diagnosed a pretty significant sinus infection.  He prescribed Josh an oral antibiotic and probiotics.  On the way home from the doctor’s office, Josh informed me, insisted, no more like demanded, that he was “going to keep my medicine downstairs and take it myself!!!!” 

Really, my kid is going to self-administer his own medication???  Could I trust him to do it the right way?  Well, we were about to find out!  We went over and over and over the “rules”.  Pretty easy dosing actually, one antibiotic and one probiotic around 7:00 a.m. and one of each again around 7:00 p.m.  My instructions were met with comments like, “well, I don’t know if I’ll be up at 7:00 in the morning, so whenever I get up, I will eat my breakfast and then take my pills.”  Seriously, how could I argue with his logic? 

I don’t know if moms really ever get used to having to untie the apron strings, but I’ve been having to do it his entire life, one baby step at a time, and it never seems any easier, no matter what stage he’s in.

Josh is taking the wheel.  I’d love to tell all of you that he’s being nice about it and asking me politely to get in the passenger’s seat, but the reality is….he is taking the wheel and shoving me into the backseat, if he even lets me ride in the “car” with him at all and, in most cases, he does whatever is required to get to the same destination that I would have, just taking a different route. 

More and more every day, I can hear him in my imagination yelling at me with delight in his voice ”I’m driving now, buckle up, it might get bumpy, but it’s gonna be fun” and I really couldn’t agree more.  What a ride it has been so far, 18 years come and nearly gone ~ where has my baby gone?! 

I look forward to every new day that he puts a new demand on me to “let go ~ just a tiny bit more.”  I don’t feel like it’s going to be long before we are wishing him “safe travels” on the new road that he has discovered and demands to travel solo!

From the director of the film-in-progress: ethan’s law

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Emma and Ethan Saylor

Hello blog readers, my name is Edward Rhodes and I am the director of the documentary Ethan’s Law. 
 
Our intention is to depict accurately the events leading up to the death of Ethan Saylor, the actions taken by Governor O’Malley in response, and the push for legislation providing Maryland Police with training on how to resolve conflicts with people who have intellectual and/or developmental disabilities. 

So far a committee has been formed and tasked with the job to propose such legislation: the Committee for the inclusion of individuals with intellectual and developmental disabilities. This committee chaired by Timothy Shriver, President of the Special Olympics, consists of law enforcement officials, lobbyist, health care officials, self-advocates and politicians. 
 
From the very beginning I knew what an important story this was to tell. So many things have fallen in place beyond my control it is obvious this project is an act of God. Throughout the development of this production I am reminded of each step leading to this point.

Starting with my family, as an only child I had no one to compete with for the affection or assets of my parents, which is a gift and a curse. To be honest my parents could never afford another child. I was way too much of a hand-full to divide their attention. They indulged almost every interest giving me an amazing range of experiences. In the journey to understand who I am, I realize that my curiosity has set the stage for my career as a storyteller.

Writing this blog entry also inspires memories and feelings that have been otherwise, for lack of a better word, repressed. My Mother’s college best friend and roommate have a daughter with special needs, Jennifer. Growing up with her I was never truly conscious of her disability. Along with other people, this movie is a gift to her and her parents. 
 
Ethan is a Martyr of the fight against police brutality. 

The events leading up to Ethan’s death resemble a perfect storm.
Trying to remove the emotion from my opinions after reading the witness reports is impossible. I am walking a line in deciding the direction of the movie. There is so much evidence pointing toward abuse, negligence and discrimination that it is unavoidable to conclude his death would have been prevented had those officers had ANY training at all. My focus remains to create a property of education and a tool for change. It seems like every day something else is brought to light illuminating that it is time for change.

Fingers have been pointed in all directions but the fact remains that removing Ethan’s aid from the situation not only transfers responsibility of Ethan’s well being to the officers it prevented Ethan the opportunity to understand the situation therefore creating a scenario designed for failure. If the intention was ever to resolve the conflict peacefully, why would any of those officers believe they would be able to effectively communicate with a person possessing an intellectual disability? and Why would one officer be overheard saying “Guess we’re gonna have to call the boys”? Had the situation escalated to the point in which they needed “back up” before they even spoke with Ethan? 

Whatever their logic, the answer is ultimately reduced to pride. The first thing taught in the Montgomery County C.I.T. (Crisis Intervention Training) program is to defer to the care giver when resolving conflicts with  individuals having special needs. Had Mary been allowed to just give Ethan a  hug she would have had him rapped around her little finger as usual. 
 
My heart goes out to her and the consequence this incident has had on her life. The trauma of this incident has taken the life of one person and completely altered forever the lives of so many others. 
 
Ethan’s love of Law Enforcement sets an ironic tone to this tragedy. Had the Frederick County Sheriffs Department responded to any of the invitations to participate in the C.I.T. program, it is possible that Ethan would have seen his 28th birthday. 

This and so many other reasons are why this training must be made mandatory. Aside from the common sense logic, the issue of liability is also raised. In a similar incident in Montgomery County two officers that acted with excessive force were treated differently in a judicial setting. The officer that had completed the training had a more severe consequence than his partner who had not participated in the program. The reason is simple; the one officer should have known how to better diffuse the situation. 
 
This raises the question but alludes to the reason why none of the officers involved with Ethan’s death face any reprimand or criminal charge even though his death was concluded a homicide. 
 
Recently it seems like everyday a story breaks about police taking advantage of their position. I personally have met and know policemen that are examples of the “good guys” Ethan was so passionately in love with. 

However it is evident that there needs to be better accountability, training and screening procedures for people in law enforcement.

Today we are almost half way to our goal on Kickstarter and with a little over 30days to go I am confident we will gain the support to reach that goal. Unfortunately new costs have presented themselves and we need your help more than ever. The two most important things about making a movie are the images and the sound. It is imperative that we be able to hire an audio mixer to  handle some of our interviews. If anyone knows any production professionals that would be willing to donate their time please contact me through the Kickstarter page.

 - Edward Rhodes




The Road We’ve Shared is dedicated to the life and legacy of Ethan Saylor and as such, it is our priority to share all news and events that involve his life and the consequences of his death.  We plan to share a more in-depth interview with Edward Rhodes in the near future. Feel free to share any questions for him as the director of the film Ethan’s Law in the comments and if received in time we will include them.   – Mardra