Inspired by my youngest daughter…

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Presley made this with her self-proclaimed "best friend" (and nanny) Jessica. I get inspired by their fridge art.

As you probably know, our youngest daughter has Down syndrome. My new book, “Aaaaaaagh! Spider!” (which should be out in a couple of weeks), was totally inspired by Presley’s obsession with spiders. She will check out books about tarantulas from the library, but refuse to open the books. It’s a funny joke, I think. She will also seek out spider videos on YouTube, then hit play and run to the far corner of the room to watch as the video plays. Absurd.
I included the url for http://www.r-word.orgr-word.org on the dedication page of my new book. I think it’s a great movement. I would love to see language and attitudes take a positive shift in our lifetime. She is the reason for that nod and this whole book.

Another logo designed…

Check out crowrivercrates.com and like him on facebook!
Check out crowrivercrates.com and like him on facebook!

My husband recently started his own business working out of our home. He’s making all sorts of wonderful things out of old discarded pallet wood. I recently designed this logo for his business, and the website.
Here is one of his beautiful crates. I think everyone should own at least one…so many uses, no matter what the style of your home is. Plus, you’re saving lumber from being destroyed. Repurposed and practical.

A shoe box? A place for gardening tools? A toy box?
A shoe box? A place for gardening tools? A toy box?

The new book…

I am hard at work and in a heavy production cycle for my newest book called “AAAAAAAGH! SPIDER!”. I will hopefully be completed by early February 2015, and the book should be available about that time.

A first-draft of the cover
A first-draft of the cover

I am thinking that maybe I should do a kickstarter.com campaign. The hard work is done, now the rest is just having a budget to get out and promote it; making a media kit and sending it out. It might seem like no big deal, but everything from printing to postage costs money…money that is hard to scrape together yourself sometimes on an artist’s salary!
Maybe I’ll do the social media thing for awhile, hope it takes off, and test the waters.

I am really proud of this book. I think it’s funny and clever, and hopefully other kids and parents will like it. It features a spider, which is my youngest daughter’s (Presley, 8) obsession.

Feeling blessed, thankful, and honored

I am generally brought to tears whenever I check my email and some amazingly kind and thoughtful person has taken the time to drop me a line about the book.

It doesn’t happen every day, but I do hear from folks a few times each month, and it really just makes my day. A reader in Ireland recently dropped me a line, and said:

“I wanted to send you a note to thank you for this incredible book. I am the mum of an amazing little boy,, he is 17 months old, a bundle of love and cuddles and complete annoyance to his big 4 year old sister as all little brothers are!! Noah has Down Syndrome and a friend of mine gave me your book “What I Want You To Know” as a present.

I adore my little boy so I did not read the book to necessarily find answers or acceptance but I find myself reaching for this book all the time! It is beside my bed and I regularly fall asleep with a smile on my face after looking through the illustrations and the fantastic interpretations of the life of a smallie – I especially love the one with the little superhero as [my son] looks a little like the illustration and he truly is my hero! I can relate to so many of the pages in this book and I imagine it will come with me always.

Thank you for being a mum who pushed so hard to get this out into the hands of other parents. I think people handle this new world that is offered to them with many different approaches and perspectives, I am very grateful for my amazing family and I look forward to many adventures, I am now ready to smell the flowers, the grass, the trees while wearing our woolly hats in summer and even find some time for dancing all the way home : )

Thank you,
CS
Ireland

No, thank you! Words can’t express what a privilege it is to hear from you.

Thank you to any one who has taken a few minutes to read my simple little book, and share it with others. Being a new parent can be so hard, I am happy that some comfort can be taken away from the book.

 

I’m going to go give Presley a big hug and kiss now!

That uncomfortable feeling…

Every day I search the news via google for stories relating to Down syndrome. For months now there’s been the news that there is now a simple blood test, done early during a pregnancy, that can detect Down syndrome with 99% accuracy. I’m all for testing, if it allows the expectant parents time to prepare and learn all they can about Down syndrome.

However, I do have a problem with headlines like this: “Blood Test Can Defeat Down Syndrome” . Huh. Really? Get the blood test and BAM! Cured!

No. It’s not a cure defeating the syndrome. It’s based on the notion that never again does anyone have to give birth to a child with Down syndrome.

This makes me sad. How can advocates and caregivers like myself keep banging the drum and chanting our mantras: “They are more alike than different! They matter! They are great people who happen to have an extra chromosome! They can do anything!” while the medical community is basically saying, “test early and terminate…it’s not worth the hassle.” How can we keep pushing for the rights of individuals with special needs, while so many are saying they shouldn’t even be born: that their lives are somehow worth less than a “normal” baby?

You can say you’re for the rights of those with special needs, but they will never be equal as long as terminating them out of existence is an option.

Continue reading

Ending Down syndrome abortions

This blog entry is my off-the-cuff response reply to this op ed in the Times today: 
http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/

Today the New York Times offered up an editorial called “Outlawing Abortion Won’t Help Children with Down Syndrome”. A title like that is sure to draw me in, being both a parent of a child with Down syndrome and a resident of North Dakota.

North Dakota has one abortion provider in the entire state. Continue reading

Meet Karen Gaffney

What an exceptional woman! Yet again I come across an amazing individual who happens to have Down syndrome, and am reminded of the unlimited potential and bright future ahead for my youngest daughter!

Remember parents, (or parents to be), your child may have Down syndrome, but what is to stop them from having a wonderful life full of amazing accomplishments? Nothing seems to be slowing Karen down. Push your child. Expect great things. Love life!

Thanks, Karen.

WDAZ interview

I finally got a copy of my interview from earlier this month uploaded to youtube. My very first time on television–I ended up not being as nervous as I thought I would be! I’ll be ready for Leno before you know it…