Category Archives: National Down Syndrome Awareness Month 2014

Meet Rion!

Since we first met Rion in 2014 he has graduated from Crimson Life and now has a job, with competitive pay, a great group of friends and he lives life to the fullest!

Originally posted 10/29/14

Meet Rion!

Rion is 20 years old and attends Clemson University at part of the Clemson LIFE program.  Like other college freshmen, he lives in a campus dorm and enjoys socializing with other college students as well as attending the football games.  In addition to taking literacy, math, technology, and cooking classes, Rion enjoys his bowling and equine classes, working out every day in the gym, and volunteering as an assistant with a children’s soccer league.  A busy guy!  Next semester Rion will begin an internship.  He has worked as a busboy at Paul’s Wood-fired Burgers in Roebuck, SC.
What stands out the most about Rion is his giving nature.  He will do anything for those in need whether it is helping the elderly or giving care to the sick.  Rion is a quiet, low key guy.  He likes staying behind the scenes, cheering others on and giving assistance however needed.

Rion’s favorites:

Music – Country (Blake Shelton and Rascal Flatts)

Favorite song:  Life is a Highway, The Boys ‘Round Here

Movie – Jack Frost, Shrek, comedies and musicals

TV show – Glee and Austin and Ally

Sports he plays:  swimming, baseball, bowling, basketball

Favorite pastimes:  singing karaoke, spending time at the pool with friends, boating and tubing on the lake, spending time with family

Favorite food:  sub sandwiches

Favorite team:  Clemson Tigers

Best thing about college:  meeting cute girls and being with friends

Favorite memory:  Getting invited to the Orange Bowl by the Orange Bowl Committee and Danielle Bradbury (The Voice winner)

Rion on The Road We've Shared for Down syndrome Awareness month

Meet Joey!

We are saddened that Joey is now dealing with dementia. However, his sister Marianne reports:  “His health is fabulous and he is so happy!” Our prayers are with Joe and his family.

Visit them on Joey’s Ups with Downs.

Originally posted 10/22/14

Meet Joey

Joey Solinsky, the oldest of six children, has Down syndrome. He works in a local barbershop sweeping hair and enjoys a massage every other week. Joey lives in a group home. His interests include watching old TV shows, listening to his radio on his headphones and writing his calendars.

It is hard not to smile when Joey is around.

Joey Solinsky

 

 

 

Meet Dev!

Originally posted 10/16/14.  Go to RaiseExpectations to see what Dev’s been up to.  (Hint – it includes college and the White House)
Meet Dev on The Road We've Shared for Down syndrome Awareness month

Dev just turned 18

She is a Cheer Leader through and through

She loves to dance and sing

Her favorite class is Marine Biology

After graduating high school in the spring, she will be taking classes at the community college

She enjoys challenging herself and annoying her younger brother 🙂

Meet Marcus!

Originally posted 10/11/14

Meet Marcus on The Road We've Shared for Down syndrome Awareness month

Marcus is 24 years old, his birthday is in June and he is already planning the next big party.

His favorite job was making spiral bound planners at Wright Printing, next he’d like to learn how to drive a horse carriage. Preferably in Times Square, but one step at a time, we are on a waiting list with our local Equine Association for this training.

Currently his favorite song is “On Top of the World” by Imagine Dragons. But truly, he has about 100 favorite songs.

Other Favorites:

  • Favorite Broadway song – “Who I’d Be” from Shrek the Musical
  • Favorite food – peanut butter and jelly
  • Favorite TV shows – The Red Green Show, Red Dwarf, The Simpsons and 100 more
  • Favorite Muppet – Walter
  • Favorite City to visit – New York City and Las Vegas
  • Favorite show in Las Vegas – Terry Fator
  • Favorite Holiday – Halloween
  • This Year’s Costume – Jack Skellington
  • Favorite Pastime – ProTools Recording session with Dad.

Creative Works due to be published/produced within the next year: Black Day: The Halloween Band (a story book and animated short) and “Cassie through the Closet Door” (a one-act play).

When asked, “What do you want to be when you grow up?” He answered, “Myself.” 

You can follow Marcus on Facebook and Twitter!

The Up Brothers!

Originally posted 10/7/14
These two are cuteness overload! Check out how they’ve grown on their Facebook page!

Picture

Tuesdays in October on The Road, we’ve invited other parents to share their stories.  First to respond to our invitation was Dad, Juan Castillo, who has two sons with Down syndrome.
By Juan Castillo
My name is Juan Castillo and I am daddy to the two most awesome boys in the world. Blake Uriah age 5 1/2 and Dalton Vance age 1 1/2.  They were both born with Down syndrome and are most definitely daddy’s pride and joy.

We had Blake after being married for 20 years, he is our first born, yes I said 20 years but that’s another story. Everything was pretty normal up untill we got that call from the Dr, you know the one that makes your heart stop for a few seconds. He told us that the test had come back positive for Down syndrome and we needed to come in ASAP. He told us all the basic medical jargon and suggested an amnio but we eventually decided against that. When we first found out I took it pretty hard and even had thoughts in my head about abortion.  Michelle on the other hand knew right from the beginning that she was having this baby no matter what.  To be honest I knew nothing about Down syndrome and the only thing I could think of was what is everyone going to say about me.  I had no idea about common health problems or anything.  I think I was more worried about being embarrassed then anything else.  I really didn’t talk to anyone or do research, I wish I had though.   We saw a specialist and according to them they saw no signs of Down syndrome, I was really happy and just knew that God was just testing us.  I even had a dream where I actually saw me and a little boy playing in the front yard and he did not have Down syndrome.  Time flew by and next thing you know it’s January 16th and both Blake and Michelle are about to have the longest 5 days of their lives.  Blake had a really really tough birth, he had heart problems from the beginning and ended up being an emergency c-section.  As soon as he was born my whole life changed my whole way of thinking changed I changed. Blake was born with a lot of problems the main one being imperforated anus, basically he was born with no opening in his bum. He was hauled off by ambulance to another hospital where he had emergency surgery and spent the next two months in the Nicu.  Blake ended up having a total of 3 major surgeries in less then 2 years and having a colostomy bag also. And the at home procedures that we had to do to him were horrible we cried every time we had to do them. The thing is that all those fears of embarrassment or thinking that God would never do that to me just vanished.  I was a dad I wasn’t a Down syndrome dad I was just a dad and my only worries now were of taking care of my son.

Fast forward a few years and now Michelle is pregnant with our second boy.  And again everything was normal until that phone call again, you know the one where you feel like you can’t breath.  We got the news that Dalton could possibly have Down Syndrome also and I gotta admit it was still a shocker for me. Even though we knew that it was a possibility I just didn’t think that it would happen again. I kinda of fell into that old thinking of God wouldn’t do that to us again, we went through enough with Blake, we did our time.  I really thought that things were going to be different this time so once again I found myself getting upset. But this time we took the new maternity 21 test and we found out for sure, we wanted to be better prepared.  I remember thinking why me and why us how can we go through this again. Just like before Dalton decided to have some heart issues and come out early.  He decided to follow Blake and also got a ride in an ambulance to the other hospital but he stayed 3 months in the NICU.  He was born with many problems also and had some really tough at home procedures to follow.

They are both doing better now but will most likely have medical problems through out there lives.

Blake and Dalton are two very special little brothers.  I look at them daily and often wonder what on earth did I do to deserve them how lucky am I to be their  daddy.  All that negative thinking before they were born is normal but all gone now and replaced with nothing but true love for them.

Having two kids with Down syndrome is just like having two kids without Down syndrome, you love them, hug them, kiss them, tell them you love them everyday and do your best to give them everything you never had.

Thanks

Juan Castillo

Daddy to

The One And Only Up Brothers.

Meet Dude!

Originally posted on 10/2/14
Meet Dude on The Road We've Shared for Down syndrome Awareness month

“Dude” (Dhahran) is 22 years old.
He’s been nominated for a RISE Award. He holds a certificate of graduation from Phillip O. Berry High School, 2013, in Charlotte, North Carolina. A native of Cleveland, Ohio, Dude enjoys dancing, jigsaw puzzles, basketball and water. He’s been involved in activities through the Therapeutic Recreation Center of Charlotte, Special Olympics and Strafford Richardson YMCA.

Dhahran inspired a published children’s book, titled, Dude Has Downs, authored by his mother, Celeste Hart, which simply describes the cause; the feelings and social issues like the stares, comments, bullying; and the joys of having a child with Down syndrome.

Feature Friday: The Road We’ve Shared Story Club

We’re all about sharing stories here on The Road, so it’s only natural that we’d start a book club – and call it a story club.

There have been some great memoirs published over the years, and reading them together gives us a chance to share our reactions.  The Story Club is the place where we can read about how one family faced a bump in the road, and brainstorm about how we might do things the same, or differently.

First on our list was “Adventures in the Mainstream” by Greg Palmer.  

So far, we’ve been posting questions on our Story Club Website and in our Story Club Facebook group.

We’re only about half-way through the book – so if you’re interested, there’s still time to get in on the fun.

Discussion Format

Our questions are designed to get reactions about a specific piece of text from the book.  This way, you’re not required to remember every bit – we provide the quote we’re referring to – and ask you a few simple questions to start the discussion.  Here’s the latest question as an example:
Q12)  ”Getting him to go also took some lying.  I told him he could get a burger in Kilronan if he came, although I thought the possibility that the tiny village of Kilronan would have any burger joints was about as likely as a Kilronan K-Mart next to the Man of Aran Taco Bell.  But I’ve about had it with Ned staying on the boat.” p. 29

What is your reaction to the deception Palmer uses to gain compliance from Ned?  Have you told “white lies” to your loved one?  Used bargaining techniques that you wouldn’t consider using with other adults?

Live Talks

We’re in the process of scheduling live discussions over the internet so we can capture more of the feel of a real book club.  Our next book will be “Life with Charley – A Memoir of Down syndrome Adoption.”
We’re super excited about this one because the author, Sherry Palmer, is a friend of ours.  We’ll be able to ask her questions about the book directly!  

Be sure to subscribe to the Story Club newsletter for information about when we’ll start discussions on this book and when you can talk to Sherry.  In the meantime, you may want to listen to our interview with Sherry and her family.

We’re Open to Suggestions

The Story Club is the latest addition to our list of services and very much a work in progress.  We’d love to hear any suggestions you may have about what books to read, or what features we should include in The Club.  Email Stephanie with any questions or comments.