Join Us In Celebrating CHD Awareness Week, Feb 12-18, 2017 here at Special & Determined #CHDAwareness

Join us in celebrating CHD Awareness week, Feb 12-18, 2017.

Congenital Heart Defect (CHD) Awareness Week is an annual awareness effort to help educate the public about congenital heart defects.  This year CHD Awareness Week will be celebrated Feb 12- 18, 2017. Join us as we celebrate our #HeartHeroes!  

In honor of this week I have compiled a list of great books for children and adults to help explain and understand congenital heart defects.

heart books

Here they are:

1) Riley’s Heart Machine

rileys heart book cover Riley worries about sharing her secret of having a heart defect and a pacemaker with her school friends. She tackles her fear of being different and reveals her secret to her friends in a unique way. Children will learn about accepting others differences and embracing the attributes that make them special. Suggested age range for readers: 3-8

 

2) Zipline

zipline

“Zip-Line” is a charming children’s book written for young boys and girls that had open heart surgery and are left with a “zip-line” – a large scar on their chest.

 

3) I Couldn’t Love You More

I Couldnt Love You More

When Matt and his wife, Sarah, were halfway through her pregnancy, they discovered their son would be born with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital defect. Matt and Sarah’s son, Bowen, was born on 9/9/10 and received a huge following through the Hammitt’s blog (bowensheart.com), K-LOVE, and ABC News. A portion of the proceeds from the book goes to the foundation the Hammitts’ have started to help parents with children who have this heart condition.

 

 

 

4) Born With A Broken Heart

Born With a Broken Heart

Alex’s heart book, Born With A Broken Heart, is an inspirational and educational children’s book. It is our hope that this book will give parents and children the opportunity to learn about congenital heart disease (CHD) and to spread CHD awareness throughout the world.

 

 

 

ADULT BOOKS

1) Heart Warriors –

heart warriors

Five months pregnant, Amanda Adams and her husband were given two abysmal choices regarding her pregnancy: force her baby to fight for his life through countless invasive and dangerous surgeries, or perform a late term abortion. Despite the fact that Liam was missing half his heart, Amanda chose life.

 

 

 

2) Sam’s Heart

sams heart

When Nicole was pregnant with Sam she was told that there was little hope for him to live. Now a healthy two-year-old Sam has had his fair share of operations and time in hospital, but now lives each day with fun and purpose. Journey with Nicole as she shares her family’s story of overcoming the world’s obstacles to trust and believe in God’s promise. With God on your side miracles happen. www.samsheart.com.au

 

 

 

3) Henry: A Hypoplastic, Congenitally Defective, Transplanted Tale

henry

I could have written a blog about my kid – the one born with a funky, hypoplastic heart. But Henry (the Blog) was more than just sharing Henry’s story. Sure, it chronicled our lives during Henry’s years in and out of hospitals, multiple surgeries and terminal maternal hysteria. Good times, indeed!

 

 

 

Then of course there is my book “Jacob’s Journal – My Journey Home

Jacob's Journal “Jacob’s Journal – My Journey Home” is written by a mother of a child diagnosed at birth with Down Syndrome. This story is unique in the way it was written, since the mother chose to write it as if her son was telling the story. It will take you on an incredible journey, as this first time Mom finds out when she was 4 months pregnant, that her child has a congenital heart defect called – Tetralogy of Fallot.

Travel with this family on their emotional roller-coaster ride from Jacob’s birth, through his first surgery, to the first couple of months when got home.

 

 

Is there a favorite book about CHD that you would like to share?  Leave it in the comments.

Down Syndrome In The Workplace – Companies That Employ Individuals With Down Syndrome

down syndrome in the workplace slider

As I wrap up this campaign, I was so impressed by all the amazing entrepreneurs or individuals with Down Syndrome that own a business or are working at a meaningful job that I shared with you.

down syndrome entrepreneur (1)

I am also very impressed by all the companies/nonprofits that are helping adults with Down syndrome find jobs, employing them or teaching them, that I wanted to share a few that I came across:

Aspire Coffee – At Aspire CoffeeWorks, adults with and without disabilities work side by side to bring you freshly roasted coffee. It’s a productive and successful environment and a great example of how people of all abilities can work and succeed together.

When people promote and demonstrate a way of living that embraces and celebrates the inclusion of those with disabilities, everyone is better and stronger for it. At Aspire, and at its social enterprise Aspire CoffeeWorks, this is not a goal or a dream but a belief lived out every day.

Aspire is one of the most innovative human service non-profits in the Midwest with an incredibly talented and dedicated team of more than 250. Plus, Aspire is backed by 200 community partners, thousands of donors, volunteers and family, and friends who work together to redefine what’s possible for people with disabilities. Annually, Aspire serves over 900 participants, who have autism, cerebral palsy, Down syndrome and other disabilities.

Creekside Cookies and More, Inc. – Creekside Cookies and More is a not for profit organization begun by parents of young adults with Down Syndrome. It was uniquely created out of a need to provide opportunities for adults with disabilities in the community. Through our “old fashioned“ mixes, we wish to share with others the creativity and abilities of these young people while providing a vocational resource that helps to build skills and create hope for those with developmental disabilities.

Inspires2Aspire – Inspires 2 Aspire became a reality in 2009 with the assistance of the Summit DD Community Employment Services Micro-Enterprise Grant Program and my family support group. We share a portion of our profits with organizations who support individuals with developmental disabilities.

Simply Adorable Blankets – is a non-profit 5013C organization. Their organization was created to provide more opportunities for young adults with disabilities in Southeastern Virginia. They promote awareness, provide resources and offer training to people with developmental disabilities.
All of this helps them to become independent, productive members of the community.

Waggies by Maggie & Friends – Waggies by Maggie & Friends is a non-profit dog treat company whose mission is to employ persons with intellectual disabilities. Their all-natural, vet-approved treats are made with the finest ingredients and contain no preservatives. A purchase of Waggies rewards your dog while supporting employment for members of the community who want to be part of the workforce. It’s a winning combination!

Beau’s Coffee – is a 5013C nonprofit, a special coffee shop run by very special people in Wilmington, NC

This campaign came to me as I met a lovely young woman who was at a local conference. She had a table there as she was representing her business Pampered Chef, and it came to me.

As parents and individuals with Down syndrome are reaching the end of their high school years and are considering what to do next, whether it be secondary education, going into the job field, volunteering or running a business. There are plenty of at work from home online sales businesses that they can get into, for example:

Pampered Chef

Scentsy Candles

Mary Kay

Young Living Essential Oils

Stella & Dot

to name a few. You just need to work with your child to determine what it is that they want to do and build a team to get them there.  Transition planning usually starts around 14 years old. Their IEP team will start talking to you about transition planning, and that is the time you will sit down with your child to find out their career aspirations. What do they like to do, do they want to go on to college?

PIN LATER:

Transition planning

Unemployment rate for individuals with Down syndrome is high, but it doesn’t mean they can’t work. It doesn’t mean they can’t run a business. You just need to give them the right tools to be successful!

PIN LATER:

21 amazing down syndrome entrepreneurs

 

1st Entrepreneur – Andrew Banar from Group Hug Apparel

 

Down Syndrome In The Workplace – Meet Our Nineteenth Entrepreneur With Down Syndrome

Special & Deteremined WDSD - Troy Drake s

 

Meet our nineteenth entrepreneur with Down Syndrome – Troy Drake.

Troy is an incredibly talented entrepreneur from Nevada. After his family realized how difficult it was going to be for Troy to find a meaningful job, since unemployment rate for individuals with Down Syndrome is so high, they took a leap of faith and opened up a company that makes wooden inspirational signs, personalized items and other home décor.

Hence the birth of Doodle Duck Design 47. An online Etsy shop of products created by Troy himself.

You need to check out Troy’s shop, he has such wonderful signs. Here are a few examples of some I like:

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Please continue following us as we celebrate 21 entrepreneurs who own their own business, have a meaningful job and the companies that are hiring individuals with Down syndrome, as we lead up to celebrate World Down Syndrome Day on March 21st.

Down Syndrome In The Workplace – Meet Our Twentieth Entrepreneur With Down Syndrome

Special & Deteremined WDSD - Karen Gaffney s

 

 

I am so happy to finish this campaign with our twentieth entrepreneur with Down Syndrome – Karen Gaffney!

Karen is a truly motivational speaker, self advocate, college graduate, President of the Karen Gaffney Foundation and an avid swimmer.

She successfully swam the English Channel as part of a six-person relay team. And two years ago, she accomplished her biggest swimming Challenge yet…she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else.

Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations.

Her inspirational TED Talk she did July, 2015 entitled “All Lives Matter” was so amazing, let me share:

 

Her foundation the Karen Gaffney Foundation is “dedicated to championing the journey to full inclusion for people with Down syndrome and other disabilities”. Karen has videos and courses that she has developed.

Her lifestyle proves a full productive and inclusive life is in store for parents and families of a child born with Down syndrome or other learning disabilities.

Please visit her site and all that she is doing to pave the way the individuals with Down Syndrome.

Please continue following us as we celebrate 21 entrepreneurs who own their own business, have a meaningful job and the companies that are hiring individuals with Down syndrome, as we lead up to celebrate World Down Syndrome Day on March 21st.

Down Syndrome In The Workplace – Meet Our Eighteenth Entrepreneur With Down Syndrome

Special & Deteremined WDSD - Nolan Stilwell s So let’s meet our eighteenth entrepreneur with Down Syndrome and see what Nolan Stilwell is cooking in the kitchen.

Have you heard of Sweet Heat Jam Co? Sweet Heat Jam Co. was founded in 2011 by Nolan Stilwell. Nolan is the creator of Sweet Heat Jams. He is a culinary artist, young entrepreneur, avid gardener and native Texan, who just happens to have Down Syndrome.

These handcrafted all-natural jams are made with a special blend of fresh chili peppers, fruits and a twist of fine-tuned culinary expertise. Most of the fruits and peppers used are Texas grown and the few that aren’t, only wished they could be! Sweet Heat jams are gluten-free, fat-free and so versatile in their use, you will find that these jams will become one of the hardest working jars in your fridge!

Nolan feels his business is a ministry, to help other individuals with disabilities feel valued in the workforce.

Let’s see what his Mom has to say about the business:

Besides finding Nolan’s jams at many fine Texan establishments you can also purchase his jams online at his store.

Be sure to check out the wonderful recipes Nolan has online using his products.

Please continue following us as we celebrate 21 entrepreneurs who own their own business, have a meaningful job and the companies that are hiring individuals with Down syndrome, as we lead up to celebrate World Down Syndrome Day on March 21st.