All posts by Stephanie

a Blogging Challenge We can All Participate In!

A to Z Blogging Challenge on The Road We've Shared

Calling all travelers!  A great way to share with new people is to participate in “blog hops” that are sponsored by groups on the internets….  

I found this one and thought it would be fabulous if we could collaborate and get everyone associated with TRWS to participate.  

Will you pick a letter and help me?  Or will I have to come up with 26 posts by myself????  (I hope for your sake I won’t)  :D

How to Participate

All of our posts will have something to do with Down syndrome, or our loved one, just like we normally share here on The Road.   The only difference will be that we will post every day, except Sundays, in April, and each post will have a “theme” that starts with the letter assigned to that day.

Here’s a calendar so you can see the dates / letters:

So say you pick the letter B.  You’ll have to write at least 100 words, pictures and videos are always welcome too, about something that starts  with B and send it to us so we can post it on April 2nd.  Sample topics?  Bananas, bowling, best friends, butterflies, the list is endless and up to your imagination.  

It will take a little co-ordination, but I know we can do it!   Even if you’ve never written and just want to send me an email with a story about your child/grandchild/sibling/friend, I’ll write it up and post it!   Know a doctor, therapist, organization that would like to contribute?  Pick a letter and ask them to write a  short post.  

I’ll update the list of which letters have been taken – so hurry and don’t miss out!  

For more information on the challenge and the sponsors visit their website.

Rion Is: A swimmer

Guest Post from Susan Holcombe (A.K.A. Rion’s Mom)

I’m THRILLED to be able to share a story for “social” month from Susan Holcombe.  You may remember her son Rion from the video “Rion Holcombe gets a special letter in the mail.”  (It’s in our video gallery if you missed it.)  This is the first of what I hope will be many, many more!  Welcome Susan, Rion, and the entire Holcombe family to “The Road.”    (Stephanie)


Years ago, we went to a Christian camp for a week.  I went along in case Rion needed a “shadow.”  Students begin the week signing up for activities in which they would like to participate.  Rion signed up for Water Sports.  After a few games of Beach Ball Volleyball, they divided the teens up for a relay race, four kids per team.  I watched as Rion’s three teammates saw him assigned to their team.  Now maybe I should mention….Rion was the only child at camp with a disability.  He was born with Down’s syndrome and is mildly/moderately mentally disabled.  However, what these teens did NOT know is that Rion is a serious competitive swimmer with Special Olympics.  In addition to Special Olympics, he has participated on community pool’s summer swim league with “typical peers.”  Rion’s specialty?  The butterfly!  And he has swam in many relays the 6 years competing.
These kids figured they were going to lose.  You could see the resigned looks on their faces.  They lined up, Rion bringing up the rear as the fourth man in the relay.  Needless to say, his team “smoked” the others.  Rion glided across that pool like he was in a swim meet.  Through sports, Rion has won the respect of his “typical” peers, but he is also a friendly, accepting person.  He loves people, but he gives them space.  He doesn’t “attach” himself to people making it awkward for others.  He knows when to speak, and when to walk away.  As an educator, I have seen many parents of children with special needs asking for accommodations and modifications to make a child’s adjustment easier.  We never did this.  While accommodations are necessary for some children, we felt like the world will not make adjustments for him so it would be better for him to learn how to overcome obstacles without asking for special treatment.  To this day, Rion complains if I even park NEXT to a handicapped parking space!  Most of what Rion has learned socially, he learned from his younger sister, younger by 3 years.  We have kept Rion very busy.  He participates in church activities, sports, and social events with both his special education peers and his “reg ed” peers.  He is a well-rounded young man now with friends galore!


“SOCIAL” ~ What does that word mean to me?  I guess the first thing that pops into my head when I think of the word social is “relationships.”  Josh has had so many over the course of 18 years, it’s really difficult to decide where to start.  

From Josh’s perspective, I think of family, friends, neighbors, school, work and social activities.  From my perspective, I think about relationships that I have developed because my son has Down syndrome.  If it weren’t for Josh AND Down syndrome, I never would have had the opportunity to meet so many amazing people!  The thought of that just makes me sad so I’m thankful our path has lead us here!  This is exactly where we’re meant to be!

I tend to breakdown our life with Josh’s by categories, so I’ll do it again here.  I think it’s easier for my brain to process where we’ve been if I break things into segments.  The one thing that remains CONSTANT, no matter what “category” we’re living in, everyone seems to fall in love with Josh.

Josh’s social relationships have run the gamut, from adults to peers and from those with a disability and those without.  His relationships have also come and gone AND come and stayed.  Some of them were parent encouraged and some of them he made on his own.  It’s a very interesting subject to think about and attempt to get down in “paper”.  

I will start by saying that I can instantly make a connection with another family who has a loved one with Down syndrome.  I have no problem approaching another family, no matter where we are.  If a connection is made great, if not, no problem, but I am drawn in to at least say hello.  My husband, Tom, likes to call this a “subculture” that we belong to.  We have made some very, very good friends by just approaching someone to say hi.  great connections have been made this way.  I don’t know why Tom and I react this way, but we do, feeling an instant connection.  We can’t possibly be the only ones?  :)  I will also go out of my way to have a conversation with an adult who has Down syndrome should I see them out in their community working or playing.  I feel blessed to have just a few minutes of their time to chat with them!


Josh participated in the typical early intervention services in our home, as well as attending a play group several times weekly.  Josh did not make friends in this stage of his life, other than the peers he played with during his group participation.  However, mom made a life-long friend during this stage of Josh’s life.  His occupational therapist, Irene, and I became partners, a team.  We knew when to push him and when to back off.  She had my blessing to push as hard as she felt she needed to ~~ mostly because he was stubborn and very, very silly.  It was important for me to find a balance between being tough and being fair.  Irene and I made that connection and were always on the same page.  I am pretty sure she fell in love with him and his sense of humor!!!  From the time Josh moved on from EI services at the age of 3, we knew we could call Irene whenever we needed her and she would always be there for us!  We feel so blessed that she has remained a part of our lives and continues walking with us on The Road We’ve Shared


The same exact situation occurred during Josh’s time in preschool.  He had friends while he was school, but they did not carry forward into the next stage of our lives.  However, I made a very good friend, Josh’s teacher, Ms. Margaret.  This is another professional who fell in love with my kid, dedicated herself to her students, and went way above and beyond the call of duty.  She is someone with whom I developed a mutual respect and friendship with.  Ms. Margaret now has three beautiful kids of her own and I love that I can call her my friend.  From what I hear, Josh is often a topic of conversation in their household…..lots of stories of his younger days to be told; just Ms. Margaret teaching her kids that everyone is different, yet we’re all the same!  She also continues to walk with us on The Road We’ve Shared!

THE Elementary school YEARS

This is a biggie, since Josh spent seven years in an inclusive environment!!  Josh had a one-to-one paraprofessional, Ms. Mayra, who worked with Josh throughout his elementary school years…..yup, all seven years!!  <—- THAT is dedication!!!!  After Josh graduated from grade 5 and moved on to middle school, Mayra and I became very close friends and have remained the best of friends for the past seven years, going to ball games, on trips and always making time to have coffee on Mayra’s way to school in the morning!  :)  A huge and heartfelt thank you to Mayra for being on The Road We’ve Shared with Josh and I for so many years!
Josh also made two very close friends while in elementary school.  Jacob was Josh’s BEST FRIEND.  They did soooooo much stuff together, swinging, sleepovers, the circus, swimming, camping and they remain friends today!  Even while Jacob is busy preparing for college, working two jobs (at one point) and finishing up high school with honors, he still finds the time for an occasional game of Wii bowling.  :)  There is nothing that makes a mom’s heart smile like watching both these boys grow into young men.  So very proud of both of them! 

Dominique was paired up with Josh quite a bit through their years together in elementary school, as Dom seemed to be able to pick up on Josh’s speech better than most.  He was nearly non-verbal back then and used a lot of sign language to communicate, along with sound approximations, a communication book, body language and gestures.  Dominique has decided to pursue a career as a Special Education teacher, because of Josh.  What a HUGE compliment that is to him and their friendship.  

Dominique, Jacob and Josh will be graduating TOGETHER in June!!  THIS IS INCLUSION AT ITS BEST and a beautiful example of The Road We’ve Shared!

THE middle school YEARS

Middle school was the easiest for us, as Josh moved to a life skills classroom and the pressure to perform academically finally ended with a great sigh of relief, in addition to having a special education teacher who “just got it”!!!!  She just understood all of his behaviors, what was connected or caused by the syndrome and what wasn’t.  These three years were extraordinarily relaxing for us as parents and I think even for Josh.  It was a much needed break from what felt like some sort of pressure (only in our minds, I’m sure) in an inclusive environment.  Josh could just be who Josh was with no expectations of him to be something he wasn’t.  Josh made many friends in this classroom and they would all travel together through middle school and up into high school.  A few of these friendships extended outside the boundaries of the classroom environment, but most are friendships made and maintained within the school setting.

We, AGAIN, fell in love with his teacher, Andrea.  She was devoted to her students beyond anything we had ever witnessed.  Although we only see Mrs. Gates occasionally at functions and we wish that we got to see her and talk to her more, we will never forget what she meant to us.  Here is a very specific story regarding Mrs. Gates:

She was a runner.  Every year, she would participate in the Jolly Jaunt 5K fundraiser for Special Olympics.  She would tell us every year, “I’m not running across that finish line without my kids!”  So, we would bring her students to her, wait 50 yards out in front of the finish line and, as she approached us, she would gather them up and run across the finish line TOGETHER with her kids!!  What a FABULOUS time we had on The Road We’ve Shared with Mrs. Gates!

THE High School YEARS

High school is really when Josh started to come out of his shell and actually “want” to be involved socially with other people.  Up until this point, he was absolutely perfectly content to stay home and be with just family or completely by himself.  I think his shell was a mode of protection for him.  His speech was very hard to understand and I think he knew that.  I can remember times when he would want to say something to someone, but would only talk to people he knew would understand him.  About this time was when we had to learn to STOP interpreting for him. 

High school has been nothing short of spectacular for the whole family!!  His teacher is Marie or as Josh calls her “SZENDA” (almost never puts Mrs. in front of her last name)!  How we have been so blessed to have all of these special people in Josh’s life, I will never know, but Mrs. Szenda again is just one of those teachers who just gets it.  She knows how to be tough but fair.  The kids absolutely adore her and I cannot blame them one bit.  Josh has made many friends in high school, old friends, new friends, friends without disabilities, and friends with disabilities.  THEY HAVE ALL WALKED WITH US ON “THE ROAD WE’VE SHARED“!!
There are so many social relationships that I could talk about, but there’s just not enough room for this post or the time in the day.  I am attaching a slideshow for all of you, since I believe a picture is worth 1,000 words! 

You will see Josh with mom, dad, Tim, Steph, Mem, Pop, Grammie, Uncle Mike, Aunty Meef, Bananas, Aunty Sher, Uncle Rick, Tyler, Amy, Marianne, Laura, friends Sam, Alex, Sebastian, Sophia, his Special Olympics bowling buddies, his challenger baseball teammates, his special friends, Patrick, Kevin, Naomi, Bobby, Nathan, Kimmey, Lena, Sam, and Joey, his neighbors, Erica, Greg, Nathalie and Jack, his teachers, Mrs. Oliver and Mrs. Pavoni, summer paras & bus drivers, his old principal, Mr. Burgess, mom and dad’s friends Bobby, Tim, Linda, Judy & Uncle Rich, his support counselor Kim, his dogs and even some members of the singing group, Celtic Thunder, who KNOW who he is when they see him! 

The list of relationships Josh has with people is ENDLESS and it is nearly impossible to name everyone, so I don’t know why I’m trying!!  If you want to see what Josh means to everyone his life touches, take a look at the Buddy Walk pictures…..THAT is what Josh means to everyone, people coming from near and far to just be with him!  

There is an
with so many amazingly wonderful people. 

Stages of Grief

In the past year, I’ve gone through all of the five stages of grief.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

At first, I couldn’t believe it had happened.  Of course I thought it was a mistake.  I spent most of the past twelve months bouncing back and forth between depression and anger.   It seemed like the anger was the only thing that pulled me out of the depression.  I’ve also done a lot of bargaining.  “If I work hard enough to get “justice”….

Continue reading Stages of Grief

Financial Goals & Independence


Payday last Friday (snow day) ~ Supervisor out on Monday ~ Brought paycheck home on Tuesday ~ Informed me he would “need to go to the bank on the weekend.”

This morning, first thing, Josh appeared in my office all dressed up, coat on.  I said “where are you going?”  He said “TO THE BANK!”  “Oh yes, sorry, I forgot!”   

There he is waiting his turn in line.  He is independent at the bank, reminds me to “stay here in line and wait your turn”, which of course being the obedient mother I am, I complied with his request. 

He goes to the next available teller who says to him “hi, how are you?”  Josh replies, “fine, you?”  The teller asks, “what can I do for you today?”  Josh says, as he places his check on the counter……”my check from Goodwill, twenty dollars, seventeen cents, all ones please” and he hands him his ID.  The teller takes the check and ID and Josh stands patiently waiting.  The teller hands him the coins and counts out 20 $1.00 bills and asks, “would you like an envelop?”  Josh replies, “SURE!” 

We leave the bank together and as we’re walking to the car I ask him if he likes getting a paycheck.  His feelings were written all over his face – the happy eyebrows, the smiling from ear to ear – and replies “OHHHHHHHHHHH YEAHHHHHHHHHHHHHH!!!!!!!!!” 

On our ride home, we had a lovely conversation about money, savings, plans, and goals.  It went something like this:

“Josh, are you ever going to put any of your money into a savings account and leave it at the bank?”



“It’s my money for working hard, gonna save it forever!”

“Well, I get a paycheck too, but I don’t get to keep all my money forever.  I have to spend it on things like food and heat and water and the cable.”

“Well, I’m going to save until I have THOUSANDS.”

 ”Once you have thousands, will you buy something?”

“Yeah, and I’m moving out!”

“Really?  Where are you going to go?”

“Not too far from you guys, down the street.”

“Are you going to use your money to buy a house?”

“No, you guys can buy it, I’ll live in it.”

Then he proceeds to explain to me that we’re going to take our money and go somewhere and that guy will say 248 and then I’ll say 249 and then he’ll say 250 and then I’ll say 251 and he’ll say he quits. 

I started laughing so hard when I realized he was describing a house auction.  Yes, he watches a TON of HGTV!! 

So there you go….Josh has a goal….he is going to save ALL HIS DOLLARS until he has THOUSANDS!  Thousands in $1.00 bills is going to eventually get hard to store in the bank’s little white envelops, but I am sure he will come up with a plan for that too!

What My Sibling Taught Me

In 2011, Josh’s older brother, Tim (my oldest son) and his long-time girlfriend, Steph, wanted to adopt/rescue a third dog from a shelter in Arkansas.  Not just any ol’ dog, but a deaf dog.  The owner of the shelter denied their request stating they were young, already had two dogs and probably wouldn’t be the best placement for a dog with special needs.   Tim wrote the owner of the shelter the following letter:  

Dr. Mike,

I want to start by saying I respectfully understand your reasoning on why you do not want us to adopt Frisbee and trust your professional opinion, but I am VERY determined to change your mind. As you may know my brother has special needs and because of that my family is very drawn towards other people and animals who have special needs. I look at my brother as a teacher.  He has taught me SO many good things I can’t even count on both hands and feet the ways he has improved my life.

With that being said I feel it would be no different with Frisbee…. Yes it will be A LOT of work, A. because she will be the third and you and I both know 3 makes a pack, B. because she has special needs and lastly, C. because she is a shelter dog which means she could very possibly have a traumatized past that she could potentially have a hard time getting over.  Now, on the contrary, I see some positive things in her that makes her have the potential to be a great dog! With the proper care and training I feel like together me and Frisbee can demolish some big boundaries set for special needs dogs and dogs of her “bully” breed in general!  Starting with the biggest factor, in my eyes anyway, she is still young which is a good starting point for training a stubborn but very smart staffy.  Secondly, I was reading an article on  deaf dogs the other day and it stated that a deaf dog has a hard time establishing that “pack” bond because they have trouble communicating with the other members of the pack.  It said in MOST cases a deaf dog will establish a better bond with there human than with the other dogs in the family, mainly because of the hand gestures and treats they will receive for understanding the hand gestures.  So I am very optimistic of that being the case in this situation.  Third, I am fully prepared for the enormous amount of patience and responsibility that is required to raise and train a special needs dog.  

With all that being said, I’ll finish up by saying I can personally promise you that you guys will not find a better home for her than with me and Stephanie.  Between the determination to prove people wrong about her “bully” breed and to break down those boundaries set for special needs dogs, and our love, respect, and appreciation for animals, I will guarantee this would benefit her as well as Stephanie and I!  I don’t by any means want to rush into anything, BUT I do really want you consider us.  It doesn’t matter to me how long the process will take, the answer no just doesn’t sit well with me as I fight for everything I believe in and NEVER give up on anything/anyone.  I would hate to see her go to a family based on the reason that she is cute and eventually get sent back because she is too much work…. I very much believe in the saying, “if there’s a will, there’s a way” and I definitely have the will and determination.  If you can take this into consideration and trust me as I have trusted you, I can guarantee a loving, caring, FOREVER home to Frisbee.

Thanks a lot Mike, for all your time!


By Stephanie Holland
My mother always told me that as you go through life, no matter what you do, or how you do it, you leave a little footprint, and that's your legacyI’ve been thinking a lot about the word “legacy” today.   It seems so incredible to me that we could be talking about Ethan – someone I knew – someone’s child, grandchild, nephew, brother – someone the same age as Josh – in terms of his “legacy” already.
I’ve been scouring the internet to try to find something that made sense to me.  The first thing that jumped out at me was this quote.

“as you go through life, no matter what you do, or how you do it, you leave a little footprint,  and that’s your legacy.”

That I can understand.  As human beings we all have an effect on the world and people around us.   Ethan was no different.   Looking through old photographs I’m reminded how he left a “little footprint” on my life and Josh’s.   If it wasn’t for him, I wouldn’t have one of my best friends.  If it wasn’t for him, I wouldn’t have known where to go for support and understanding when Josh was born.  Our lives would be different, less, if we hadn’t met Ethan.   He certainly didn’t plan that, but I’m grateful for the little footprints he made for us to follow.

“The greatness of a man is not in how much wealth he acquires, but in his integrity and his ability to affect those around him positively.”

Of course, most of the stuff out there on the internet about legacy applies to people who work at building a legacy, or have money to create a legacy.  I think this quote from one of Ethan’s favorites puts the word in a better context.

Ethan’s legacy is one of positive change.   He changed the people who knew him – and so many that he never met.   Thanks to the brave efforts of his family, Ethan’s footprints have created a path for advocacy and social change.  But, it’s hard for me to think of the shy little blonde -haired kid I used to know in those terms.

So today I toast what Ethan’s memory means to me:

*Here’s to Ethan and the little footprints he left us to follow.
May we always remember to show those we love how we feel,
Stand up for what is right,
And be grateful for the people who love and understand us no matter what.

Thank you Ethan. *

A Difficult week ahead

PictureThis is bound to be a difficult week for the Saylor family.

I can’t imagine how painful it will be to go through Ethan’s birthday (January 9th) and the anniversary of his death (January 12th).

Remembering Ethan and his legacy

On Thursday we’ll be participating in a “virtual toast” to Ethan by using the hashtag #Toast4Ethan on Twitter and everything else we post.

Won’t you join us? ?


For 2015 and the second anniversary, you can join us for an online vigil.   Post your pictures of candles on Facebook.

Creating “the road we’ve shared”


I use this drawing as my “profile picture” on most things that I do under the “Walkersvillemom” name.   It symbolizes the sentiment “I Love Someone Who Has Down Syndrome.”

There are LOTS of us out there who do!

So what makes this online community different than the ones that are already out there – lets face it – there are many.  This one is geared toward and focuses on the needs of parents/caregivers who are dealing with adult issues.  There are fewer choices for our specific group, but we need them just as much.  

Our needs are different.  

I have some ideas about what I’d like to see in an online community – but I’m looking for input.  Please feel free to share ideas about what features you think  we should have and what topics you’d like to learn more about / discuss.

Here’s a list of the goals I’ve identified so far:

Plans / Objectives:

  • A place to share pictures and videos of our kids without judgment.
  • Forums to discuss specific topics of interest with the ability to have ongoing conversations and archived information.
  • Access to specialists (doctors, lawyers, policy makers).
  • Blogs and stories that pertain to adults.
  • In depth interviews that allow stories that would not normally be shared to reach a larger audience.
  • News on relevant topics.
  • Ability to advocate on issues that affect adults with intellectual disabilities.

The Philosophy of the community is also a work in progress, but here’s what I have so far – feel free to make suggestions here too!

Together we can create a living history that tells the story of a generation of people who have Down syndrome – who were among the first to be “mainstreamed / fully included” in public schools and now have adult lives, concerns, and dreams.  While we do this, we can support each other by learning, sharing, and responding to each other in a way that was not possible when our children were young.