Physical Therapy Exercises for Babies with Down Syndrome

March 3, 2018 by Dawn@cedarsstory.com 16 Comments

Physical therapy exercises for babies with Down Syndrome

Whether done at home or another location physical therapy for Down Syndrome is not terribly difficult.

Realizing from the beginning that my baby with Down Syndrome was likely going to need lots of help learning some of the skills I always took for granted with his 5 older siblings, I immediately became proactive. I am very blessed to live in a location that provides physical therapy for Down Syndrome in home, both as a free service, and also as a service billed to my insurance. However, I was also a Google-aholic and I wanted to find anything I could do to help my little one. In chatting with other moms from around the world I have come to learn that not all children with Down Syndrome are given the same therapies so, never one to hoard helpful information, I thought I would share what I have been doing at home with Cedar.

[Read more…]

Orange Socks- Prenatal Diagnosis Support Site (the man behind the socks)

March 1, 2018 by Dawn@cedarsstory.com Leave a Comment

Orange Socks is a forward thinking site developed to help families connect with others a Prenatal Diagnosis Support site that allows parents to actual hear audio recordings of parents sharing their stories and their experiences of a child with a diagnosis.

It was when I first began sharing my own story about Cedar, that I found the Orange Socks Instagram page. I actually think we hit Instagram right about the same time, I shared one of the first posts I wrote about Cedar there, it was 7 days before their website went live. (You can see my baby bump in one of their earliest posts). I love their mission and the back story behind the name, Orange Socks.

[Read more…]

Homeschooling a Child with Down Syndrome

February 20, 2018 by Dawn@cedarsstory.com Leave a Comment

Homeschooling a child with Down Syndrome

I have been one of those “weird” homeschooling moms now for just over 6 years. I have graduated one child who is enrolled in college now, and I have preschoolers coming up the ranks. When I first learned of my newest child’s Down Syndrome diagnosis I feared that I would have to put him in some type of school setting to receive services. I thought that homeschooling a child with Down Syndrome was not an option.

There were so many irrational fears at first, not the least of which was our family’s educational choices.

As time went on and the dust settled the fear was still nagging me. I knew how to teach gifted kids, visual learners, auditory learners, and my hyper undiagnosed ADD kiddo, but homeschooling a child with Down Syndrome?

Then God allowed me to have a chance encounter with another mother of a child with Down Syndrome. This mom had a middle-school-aged child who was sweet, bright and engaging. He was fascinated with my Cedar which gave me the time and opportunity to ask some questions of this mama who was further along the path than I am.

I began by asking about this child’s school and whether he was in an inclusion classroom where he was mainstreamed or whether he was in a segmented or pull out resource type class. She explained that he was doing well in the inclusionary classroom for some time until middle school but then things began to change. What she described next was not quite what I expected. She shared the ugly side of inclusion with me.

Exciting News!!! Children’s Picture book to be released

February 10, 2018 by Dawn@cedarsstory.com Leave a Comment

If you follow us on social media you have likely seen a spoiler alert that I recently shared. If you missed it, I don’t want you to be in the dark, here it is… (drumroll)

Last year shortly after we launched this site/blog I was perusing Amazon for some books to order for Cedar. I realized that there were very few children’s picture books that showcased photographs of children with Down Syndrome. In fact, there were only 3 that I could find, all are board books.

When I was a child, some of my favorite books were in an old series put out by Random House about farm animals and their children.

The books were lifestyle children’s books just following the experiences of children who had various farm animals. I think the reason these appealed to me was because I was a little girl who wasn’t being raised on a farm, but I sure did love animals.

A lightbulb went off and I began thinking through the process of creating a book where my son could see children that looked like him, with Down Syndrome, visiting a farm. The logistics of this weren’t easy, but with prayer and planning, a photo shoot happened and the book was completed.

What I cannot wait to share is that there is now one more book that we can read to our children that shows diversity and allows children with Down Syndrome to see others like them. My hope for the general population is that because the book has no mention of Down Syndrome in it, they will embrace it for what it is, a cute children’s book written with rhyme and cadence that shows just how much children with Down Syndrome are like any other child. I would love to see this read in classrooms as part of diversity awareness and to promote inclusion. There are 10 children pictured in the book and each shows the world how amazing those with Down Syndrome are.

These are all of my dreams of course, and the future of those is yet to be seen, but I will share that the book will be for sale on Amazon starting on March 21, 2018, WORLD DOWN SYNDROME DAY.

I would love for you all to order it, review it, and spread the word. Be sure you are signed up on our email list to get the latest news about the book launch and release as we get closer to March!

Dear Netflix & Tom Segura

January 28, 2018 by Dawn@cedarsstory.com 2 Comments

This open letter was written to Tom Segura and Netflix in response to a recent comedy show released that has sparked outrage within the Down Syndrome community.

This is an excerpt from the transcript of his show “Disgraceful” that airs on Netflix:

“You can’t say “retarded” anymore. [audience laughs] It was just here. Don’t you remember? -“Retarded.” That’s how I… -[audience laughs] People get very upset. I don’t really support the arguments against it. When people are like, “You shouldn’t say it.” “Why?” “What if there’s one over there?” And you’re like… [audience laughs] We never said it like that. We were never like, “Look at that guy!” [audience laughs] You didn’t say it like that. You said it to describe an idea, or a situation, you know? If your friend was like, “I’ll pick you up at your house, and then we’ll come back to my place, and later we can go back to your house. And we can get your bags. And then, we’ll come back over here after that.” And your like, “That’s retarded. Why the **** would we do that?” [audience laughs] But now you can’t say that. Now you’ve gotta be like, “That’s not… smart. Your idea has an extra 21st chromosome, if you ask me.” [audience laughs] It’s not the same.”

The thing of it is, instead of a broad, outdated, and offensive term like “retarded” Tom has made it more specific and classified an entire population, those with an extra 21st chromosome, Down Syndrome as the butt of his joke.

Dear Netflix & Tom Segura,

You don’t know me, nor likely do you know anyone in the Down Syndrome community. The reason I make this broad assumption is that if you did, you wouldn’t find it funny to make statements like you did in your comedy show, Tom.

I understand that we live in a nation with free speech, I value that freedom, as I gather you do as well. But, with a freedom like that comes the responsibility to not spew hatred, racism, classism, or other negative connotations towards whole groups of individuals, least of all those with special needs.

I am a parent, Tom, I understand you will be joining the ranks of parenthood soon. I want the world to be a safe and beautiful place for my children, most parents would feel this way. I work very hard to help make the world a better place than when I found it, and I was given a special task when my youngest child was born.

You see, my youngest child was born with an extra 21st chromosome, something you referred to in your comedy show. You referred to an idea as being “retarded” but since that is not politically correct terminology these days, you said that the term should be replaced with “having an extra 21st chromosome.” That is where you went too far.

I understand that often the word “retarded” gets tossed around and frankly I don’t feel that it applies to my child, or that it should be owned by any of us who love those with Down Syndrome.

It is a dated, small-minded, and uneducated term that many are working hard to erase. I won’t even get on your case for your inappropriate use of that term, but I will say that you singlehandedly ignited a firestorm. You see, you haven’t just alienated and angered parents of children with Down Syndrome, but our friends, aunts, uncles, grandparents, teachers, neighbors, and so many more are outraged by not only your attempt at being funny, but your subsequent comments to parents of children with Down Syndrome, like Alyse who was standing up for her daughter Felicity.

You posted her comments requesting Netflix to remove the segment of your show and again used your platform to spew hatred and ignorance at the mother of a 2-year-old child. Do you know what I found amazing? When interviewed by the Chicago television station, she was civil, she did not use foul language toward you (unlike your fans used towards her and her child). She even said that if your wife unexpectedly gave birth to a child with Down Syndrome, our community would welcome you. You see, she has compassion, kindness and an ability to empathize with others, something you are sorely lacking.

Now on to Netflix and publicity. There is a saying in the entertainment world that no publicity is bad publicity, if both of you feel this way, than you have succeeded. You have earned enough bad publicity for a lifetime. I would say that the efforts of so many news anchors, Down Syndrome advocates, and reporters to reach you have come back void because you really have nothing to say for yourselves.

That is because the whole thing is disgraceful. I will sign the petition that is fast approaching 80,000 signatures asking Netflix to remove your special and ask all of my followers to do the same. I will do this not because I don’t believe in freedom of speech, but because your freedom of speech has incited hatred by your fans towards those like my son, and Alyse’s daughter.