Have you heard of "Sam's Secret Journal" ? The three book series was featured in a recent article on "The Mighty."
The books are based on a real young woman who we've met here on The Road before. She's also been featured in our posts and photo campaign for Down syndrome Awareness this month.
But for today, I asked her Mom, Sue, to talk about the books. I'm working on a project that looks at Down syndrome in books for children and young adults so I wanted to know - "What made you write a kid's book?" Her answer blew me away!
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.
What are your habits?
You may immediately think of some negative habits. Things no one is proud of or are downright rude. Like, biting fingernails, cutting people off mid-sentence, or checking our phones ad nauseam?
The thing is, I bet that you have some pretty great habits as well. Like, kissing your significant other when you leave in the morning, brushing your teeth at least twice a day, and putting your car keys in the same place when you get home. These are all simple and good habits.
Why is this important?
Habits are our behavioral autopilot. If you are unsatisfied with the state of your overall health, it is often a result of your habits, or at least can be improved with new habits.
It is important to understand that your old habits don’t make you a bad person, but still realize that in order to achieve your wellness goals, old habits must change. After all, it’s those very habits got us into this mess, or are keeping us from improving.
Change is not easy.
This post was orginally shared in March from our friend Gary Bender when she answered for us her 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.
This post was originally featured on 3/20/14 in honor of WDSD by our guest Susan Holcombe - mother of Rion.
The other side of awareness
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.
This post is supplied by written by HOLLY CAULFIELD a Cruiser from Buddy Cruises
A special vacation at sea
Shortly after I retired from 30 years as a
special education teacher in the public school system in 2007, I heard about the
Buddy Cruise. I was at loose ends looking for something to keep me busy and involved with the special needs community that had been a part of my life for so long. I was on the inaugural cruise in 2008 and have been onboard 5 of the 6 sailings to date (and have my cabin booked for cruise number seven, BC 2014)!
So what keeps me coming back?
I could go on and on about the phenomenal ships and crews, the delicious food and the amazing ports of call but it’s more than that. It’s the families and the children especially the adults with Down syndrome that is the draw for me.
When I started teaching in the 70s we still had state institutions, families were still being told not to take their children home from the hospital. The winds of change were blowing but expectations were still low or nonexistent for individuals with Down syndrome.
Originally posted 2/25 during the Kickstarter campaign to fund Ethan's Law.
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.
Originally Posted 2/20/14
Meet Joey through the eyes of his sister Marianne
Joey LOVES people...he can break the ice better than I
can. It is his smile and hugs
that melt all those around him. He loves his house mates and shows it by always thinking of them while he is out and picking up papers for them. Then when we do a book signing he just has a blast!
He especially loves to great the babies and children and of course the pretty girls!
All they need to see is his smile and they walk on over. His love for people also includes the guys at the barbershop. He recently started going back due to the efforts of the group home manager.
For that I am super grateful!
Joey loves being with the "guys"! He walks in the doors to the shop and says "HI!" Hand up in the air and huge smile on his face and all at once they say HI back.
Originally posted 2/13/14
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)
*Today's post is by our Guest, Pamela Arnoldson
HI! My name is Pamela Arnoldson, I am a director for Buddy Cruise Inc. I was asked by a member of your community, Mardra, to compose a blog this month. I am honored and I have to admit a bit nervous…I’ve never blogged! But I will give it my best shot as this month’s theme is about Down
syndrome & vacations two things I am passionate about. Which is actually how Buddy Cruise came to be. My son Joseph has Down syndrome and is the inspiration for this unique non-profit that hosts its annual conference on board a cruise ship!
As many of you may know it is often hard for families to find a
vacation scenario to meet all family member’s interests and needs. A Buddy Cruise does just that. There is something for all ages AND abilities!
When you first step foot on a cruise ship you are given a guide to that day’s activities.
Life on "the road" of caregiving for adults who have Down syndrome.
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