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 – 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.

Bringing Down Syndrome Awareness To The Classroom

S stands for superhero not just special
I love this picture, it really sums it all up for us. “S stands for super hero, not just special”, and that is exactly what my son is – our SUPER HERO!

As I looked down at his beautiful, chubby face over nine years ago; I made a promise to a small, fragile little boy that “it was going to be me and him”. I’m sure his father felt the same way as did all of his family, but for me it was very personal. I knew from that day forward we were going to be a “team”, a team with a mission to advocate for awareness and inclusion and that is exactly what we are doing.

For the last several years, I have been going into my son’s schools and doing a Down Syndrome Awareness presentation, to help his classmates better understand him and his uniqueness, and bring awareness “that Jacob is just like every other child“. He may have an extra chromosome, but he really is just like any other typical boy, he may just needs some extra help, to do things that come naturally for typically developing children.

at jacobs school

I love having the opportunity to speak to “young, impressionable minds”. Kids love to learn and ask questions, and by me going into the classrooms and talking with them, I am allowing them the opportunity to get to know my son and his diagnosis of Down syndrome. To be able to ask their questions in a safe environment, like the typical question of “can they catch Down syndrome“? The conversation is positive and productive and this opens up the door for understanding and inclusion. Which I hope next will come compassion and friendship.

It also helps the school personnel (therapists, aides, learning specialists) who work with Jacob to get to know him more personally. One of the aides came up to me after my presentation and thanked me for coming in and talking to the class, as it gave him a better perspective on Jacob. He mentioned that “it allowed him to see Jacob through a different lens” and I thought that was so important and I loved hearing that. It validated to me that going into classrooms and spreading awareness, is really helping people’s understanding of children with Down syndrome.

Jacob loves that the conversation is about him. I like that the conversation is positive and productive. As I talk to the kids and share with them things about Jacob, like how he enjoys playing basketball or they see pictures of him with his friends from IN, you see this invisible weight of misconception being lifted in the room. They become more engaged. They start seeing him more like them.

at jacobs school 2

Since Down Syndrome Awareness Month is in October and the leaves were changing, I thought what a wonderful opportunity to do a hands on project with kids using the leaves. As I gave them their instructions and the leaves were being passed out, you heard them talking.

2015-10-23 09.40.33

It was awesome to hear what they were saying, “how the leaves are different sizes, shapes and colors but that they were still leaves”.

group project

They “got it“, they got the premise of the activity. So with that, instead of me talking about why we did that project, I decided that I would have one of them tell what they saw.

FullSizeRender

And what came out of the boy’s mouth, was amazing. He saw “the differences in the leaves, but he also saw how beautiful they were”. One little girl shared she saw “how the colors were bright like Jacob is”. It was interesting to see the teacher and principal look at each other in amazement at their responses. That the presentation was truly resonating with them.

So in the end it was an awesome experience to be so welcomed by the class and to be able to share with them about Down syndrome, inclusion, and friendship. Jacob really felt like the rock star that day!

Jacob and me

Later in the day, I got an email from the teacher thanking me and telling me how the kids were still talking about the presentation. I was even at a Halloween party that weekend and one of the Moms whose son is in the class, thanked me for going in and talking to the kids. That it really made a lasting impression on her son. I felt good, because again it validated the need for this awareness.

Now for the icing on the cake. To get this in my son’s backpack the next day from the students made me want to cry. They really listened, they were really interested.

2015-10-30 15.34.52 2015-10-30 15.36.56

 

20151030_153627
So I will end this with this:

superhero in disguise Video 411 0 00 00-01

This Is What We Learned Today…Phone Number

This is what we learned today

* This post contains affiliate links. Prices on Amazon are subject to change. *

So summer is almost over and may be over for some children. But here in MA we don’t head back until September. That means we still have time to sharpen our skills, and there are many tools you can use to help your child. My son learned addition and his phone number.

We just recently moved to MA from IN, so we are still unpacking.  However, I wanted to keep my son’s school skills sharp over the summer.  So I have enlisted the help of a high school kid. He has a sister who has Down syndrome and has also volunteered in the special education room tutoring other children with learning disabilities, so he has a lot of experience. Plus I liked that he was a boy, loves basketball and could really connect with my son.

He wanted to help Jacob with some basic life skills like learning his phone number. So he wrote out the number on one paper, and then wrote out each individual number on a separate page, mixed up the numbers and asked Jacob to put them in order/to match the phone number on the other paper:

learning phone number

 

Please excuse the mess in my basement, did I mention we only moved here a month and a half ago.

 

Here is another worksheet that I downloaded and laminated, so my son can just use a dry erase marker to write it. This worksheet has helped him learn his address as well as his phone number.

nameaddressphone worksheet

Download the worksheet here: Editable Student address and phone number binder-2

He also worked on addition:

2015-08-06 15.07.38

Jacob did a great job on this activity and got them all right.

Do you work on anything with your kids over the summer?

 

Earth Day Worksheet for Special Needs Children

FroggyFun_EarthDay3Happy Earth Day!  Today will be a fun day for children all across the country as they learn about how they can save their earth.  They will watch movies, read books and do some fun hands on activities.

But as I searched the web for a free simple worksheet for my son with special needs I realized there isn’t much.  Although I know a lot of the worksheets and activities can be adapted, I decided to create my own worksheet for my son to work on today. Earth Day Letter Tile Sort Cover

Please click Earth Day Letter Tile Sort to pull down your free version of “Earth Day Letter Tile Sort” to get a free PDF version of this worksheet to work with your child.

My son loves to cut so I created it so he can cut out the letter tile (they are a little small sorry!), so you can mix them up and they can spell the words.  Or if your child wants to write out the words there are blank spaces for them to do that.

I have also created a Pinterest board with a lot of other fun Earth Day activities that can be modified for your child to do.
Follow Marla Murasko – Special Needs Mommy Blogger’s board Earth Day Activities for Children With Special Needs on Pinterest.
Here are some great books that you might want to read to your children:

the lorax

 

how to help the earth

 

the earth book

 

Let us know how you celebrated Earth Day!