Good-bye Down syndrome Awareness Month

Down syndrome Awareness Month began on October 1st. Today, it ends. I have been blogging every day this month for the 31 for 21 blogging challenge.

Every year this comes along, I wonder what I can say or do to help someone understand Down syndrome a little better.
-I see the statistics of how many mothers choose abortion when their baby is prenatally diagnosed.
-I read the comments of those online who clearly do not understand the worth of those with developmental disabilities.
-I hear stories of other families who received a diagnosis of Down syndrome from a doctor that was given in such a way that made the family feeling heartbroken and devastated.

For those reasons and many more, I chose to write this month hoping to share a story or piece that would help someone realize there is support available through websites, books, products, and people. There are health challenges that can occur but can also be overcome. There are abilities present in those with Down syndrome that can be easily seen if someone will just look. Most importantly, there is love that is powerful enough to overcome any diagnosis.

I hope and pray that message got to the people it needed to get to this month.

I would like to thank everyone who has stopped by, shared my posts, or visited my blog's FB page. Many wonderful writers have contributed guest posts this month as well, and for those writers...I am grateful.

People from all over the world have stopped by this site this month. The top 10 countries that visited were:
-USA
-Ireland
-UK
-Canada
-Germany
-France
-Australia
-Spain
-Netherlands
-China


Truly, I appreciate you reading. I hope you come back in 2 weeks when I resume my typical content on Tuesdays and Thursdays.

If you are bored between now and then, read or reread the blog's top 5 posts from this month.
1. Meet Nate: I Can...-Guest Post
2. Meet My Brother-Guest Post
3. Meet Sophie: I Can...-Guest Post
4. Meet Clayton: I Can...-Guest Post
5. Pro-Life: Babies and Beyond



Happy last day of Down syndrome Awareness Month!

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Why Jaycee is Perfect According to James 3

A year or two ago, I read this passage in my daily reading:


My brethren, let not many of you become teachers, knowing that we shall receive a stricter judgment. ² For we all stumble in many things. If anyone does not stumble in word, he is a perfect man, able also to bridle the whole body. ³ Indeed,^[a] we put bits in horses’ mouths that they may obey us, and we turn their whole body. ⁴ Look also at ships: although they are so large and are driven by fierce winds, they are turned by a very small rudder wherever the pilot desires. ⁵ Even so the tongue is a little member and boasts great things.
James 3:1-5 NKJV


I have read these words many, many times over the years. But, that day the words jumped out at me. I was inspired in a new way.

Many times, it seems that having a child who is classified as non-verbal/minimally verbal is a curse. I don't mean to say that Jaycee is a curse. But, her inability to produce spoken words is life limiting. Yes, she can use sign language and a communication device. But, her lack of verbal speech impacts her life in so many ways.

Here's just a few examples:
-She can't speak on a phone. She can grunt on it. We do use Face Time but this isn't always available all the time.
-She cannot tell me when she is sick, what hurts on her body, or when her breathing feels different. Instead, I have to watch for behavioral changes or numbers on a monitor to tell me.
-She cannot order her own food at most restaurants.
-She cannot ask questions to clarify or to engage with friends.
-Jaycee cannot read out loud using her voice. She can read aloud by "saying" the words on her communication device, but that takes 3-4x longer than just speaking and twice the memorization.
-She cannot join any group or club that requires verbal speech such as chorus.

These are just some examples. When I think about her future, her lack of verbal speech comes into play. What job can she have that requires little speech? Given her health problems would it be safe for her to live independently, if she cannot call for help?

Really, we deal with her lack of speech well. I am grateful she has other methods of communication she has success with and for the words that she can say, especially "mama."

When this verse suggested that a person who is able to control their tongue and not stumble in their words is perfect, I saw Jaycee's inability to speak in a new light. She is perfect in this aspect. She has not lied. She has not called anyone a name. She has not cursed. She has not given a sarcastic remark. She has not told anyone she hated them. She has not engaged in gossip. She has not made promises she couldn't keep. She has not told a secret she was suppose to keep. She has not screamed out some horrible words in anger. She has not made schemes. In short, no evil has come from her mouth.

I cannot say that.

I am still challenged by James 3 every time I read it. I have not been able to control my tongue in the ways that would reflect God's perfect spirit. Jaycee is much farther along in this area than me even if it is not by her choice.

When the challenges of having a child with little to no speech come up, I am encouraged by this scripture. Jaycee is perfect in speech in God's eyes.

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Jaycee's First School Dance

Jaycee in her dancing shoes for her first dance

Decisions, decisions.

As parents, we make many decisions. Sometimes, the decisions are easy. Sometimes, they are not.

Recently, I had to make a decision for Jaycee. It is a relatively small decision, but one that had extra consideration since she has special needs.

A flyer from school came home announcing a school dance for 4th-6th grade. Jaycee was in 4th grade, which meant this could be her first school dance.

My first impulse was to throw the paper away. After all, she probably wouldn't know that she missed anything. But, I didn't.

Jaycee loves music. She loves to dance. Most importantly, she absolutely loves socializing with her friends (yes- even typically developing peers) from school.

So, I pondered the dance. I must admit that I was mainly concerned with two things. First, a dark gym meant there was a possibility Jaycee could get lost or wander off. However, there were going to be many chaperones including several teachers that know her. Secondly, children from the other school in our county were invited. Jaycee is loved and accepted by the children in her school. How would children from the other school treat her?

Despite my concerns, I had one question for myself.

 If this was my son who could talk and ask questions, I would give him a choice. I would not have any reservations about his decision. Why not Jaycee?

So, I did what any good mother with some reservations would do. I volunteered to work the concession stand at the dance, and peek in on Jaycee periodically. It worked well for both of us. She didn't mind I was there (really!).

Jaycee had a great time! She experienced her first dance along with the other children in her class. And, she even got in trouble for kissing a boy! Ha!

Sometimes, we make a decision, and we learn it was the right one. That's a good feeling!


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Taking the Message Out

During Down syndrome Awareness Month, I have an entry here everyday on some topic of Down syndrome. Today, I am going to direct you to some of my writings published this month on other sites in case you haven't seen them.

• Devotional Diva Does God Direct Our Steps?   This is truly a testimony of God showing me that He cared about my family through a date on the calendar.

• On Scary Mommy  What It's Like to Be a Mother of a Speech Delayed Child  This talks about how my thoughts have changed over time while raising a child who is non-verbal or minimally verbal.

You can keep up with all my posts by following the blog's Facebook page!

My Favorite Books for Explaining Down syndrome or Disabiilty

Books are a great way to open conversations about differences in children. When my son came along, finding books that could normalize disability and differences was important to me. I also wanted him to learn about his sister's Down syndrome in a way that felt positive.

From an early age (probably 2), I started reading stories about children with Down syndrome or disabilities to my son, so we could create times to talk about these things. Living in a rural area where people with disabilities are few in numbers, I felt the books were an easy to expose Elijah to people like his sister.

So, here are a few of my favorite books geared toward children.

We'll Paint the Octopus Red

1998

by Stephanie Stuve-Bodeen

This book specifically talks about a sister learning her brother has Down syndrome. I have read mixed reviews on this book, but I happen to love it. It specifically talks about Down syndrome, and opens up the line of conversation.

We're Different, We're the Same (Sesame Street)

Oct 13, 1992

by Bobbi Kates and Joe Mathieu

This book talks about disability and differences in general. It has a message of acceptance and shows pictures of children with a variety of disabilities. The pictures are my favorite part of the book.

Zippy's Big Difference

Jan 24, 2013

by Candida Sullivan and Jack Foster

Zippy is the main character in this book. Zippy is a zebra without stripes and struggles to find acceptance with this difference. There is a series of Zippy books each one with a message from a Christian perspective on disability and difference. This is one of my favorite books written on disability while including spiritual principles.


Have a favorite book not mentioned? Comment below (comments are moderated)


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

3 Great Products for Those with Down syndrome

There are many amazing products that are made specifically for individuals with Down syndrome. I thought I would feature 3 of these today in case someone somewhere is unaware of these great products and companies.


Specs 4 Us
These glasses are specifically made to fit the faces of individuals with Down syndrome. Speaking from personal experience, finding glasses that fit my daughter's face has been next to impossible. My daughter's nasal bridge is very flat, which is something these glasses account for. If you have a child with Down syndrome who is hard to fit, I strongly recommend this line of frames.

Jaycee in a pair of Specs 4 Us

Downs Designs Jeans
At a conference for Down syndrome, I discovered this company. I was intrigued by their design of jeans made for people with Down syndrome in mind. Individuals with Down syndrome are often short, so their jeans account for this. (Normally, I try to buy capri length pants for Jaycee to wear as her "normal" length.) These jeans also have no buttons or zippers. Elastic waists are our friends! The pair of jeans we received for Jaycee from this company is of very good quality. If your child with Down syndrome has difficulty finding jeans that fit, check this company out!



Board books featuring our kids
I love the board books published by Woodbine House! These books written for toddler and preschool children feature children with Down syndrome in pictures. I love these books for the vocabulary teaching in them and the pictures of the children. When my son came along, we used these books and pictures to normalize Down syndrome for our son. I would read these books to him and say things like, "She has Down syndrome too like your sissy."

There are many great companies and businesses that have products geared for those with Down syndrome. I have named just 3 today but if you do some digging, you will find many other wonderful products.


This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

Books Written by those with Down syndrome

Did you know that there are books written by people with Down syndrome?

There are!

For another day of Down syndrome Awareness Month, I'll share three books written by individuals with Down syndrome. 

• Black Day: The Monster Rock Band Hardcover – June 20, 2015                     

by Marcus Sikora with Mardra Sikora     

This is a children's book written by Marcus, an individual with Down syndrome, and his mom. The book has a sweet message of acceptance with an unique approach.

• I am Happy to Be Me- 2014

by Sean Adams  

This is a lovely story filled with pictures and a description of Sean's life.  It is a short read which would be suitable for classrooms, awareness talks, or conversation starters with siblings. My husband picked this book up at a Down syndrome conference and even got it signed by the author.

• Count Us In: Growing Up with Down Syndrome -March 5, 2007

by Jason Kingsley, Mitchell Levitz

This is the only book listed here that I have not yet personally read. From what I understand, this book is a series of dialogues between 2 males with Down syndrome who share their thoughts, feelings, dreams, and issues in life.

Check these books and increase your understanding of those with Down syndrome!

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!