Today let’s talk about the newly published book, The Parent’s Guide to Down Syndrome.
It began with:
Dear New Parents,
In the spring of 2015, the original title suggested by Adams Media included the phrase: “new parents.” So as Jen and I began our drafts, new parents and the idea of speaking to new parents, lingered in the forefront of my mind. That said, the publishers also wanted a resource that spanned the lifetime of a person with Down syndrome, so this also elbowed space in the forefront of my mind.
In balancing those two requests we worked to create a book that includes both current research and resource information for families and caregivers of people with Down syndrome while also recognizing the nuances that come with the beginning of the Down syndrome journey for many of our readers.
I believe what we finished with in The Parents Guide to Down Syndrome is not an end-all resource it is a beginning-to-many-resources resource.
Early on we were provided with guidelines and limitations regarding word-count and page-count and chapter expectations. These expectations limited what we could share with our readers in this first edition. Probably a good idea as there is an encyclopedia’s worth of information, and more coming, regarding Down syndrome and life with it. What we have here is an easy to swallow sized starter guide.
Certainly, there are areas/subjects/subjects within subjects that present more questions than answers (for me, too). Fortunately, I am already armed with a forum, actually several forums, in which to explore some of these answers. I also hope that parents/readers will reach out to us with the questions that come to mind and are important to them, so that we can more fully define the resources and options available for families.
Another trick with that tight rope of new parents versus current resources and information overload is the fact of how much is continuing to change, mostly for the better, when it comes to these resources for families and people with Down syndrome. When my son was born, 25 years ago, the books available to me were…let’s say, bleak. The evolution of what is available to our children at all ages is changing rapidly, the only fact I foresee fully is that the need for updated information and resources charges forward with exponential speed.
What I Love and Will Continue
The portion of the book many readers are most excited for (including myself) are the “My Stories” section of the book which include interviews with teenage and adult self-advocates. I wanted to include many more of these in the book, but again, certain limitations were placed upon us. Perhaps rightfully so because I may take the rest of my life to write these; I have already arranged for continuing interviews to fill in the “My stories.”
Another section we hope to expand is the chapter on primary school years. Again, I intend to share information and links that are resources for these years via our Facebook page: The Parent’s Guide to Down Syndrome Here — please choose to follow us . We intend to bring you notes, news, and resources as a continuation of this project.
What I don’t love
Also, while I’m listing my own concerns on the project, I also concede that, although we worked hard to educate the publishers about people first language and its importance — there are a few missteps within the pages. These editors worked hard to quickly tackle a subject new to them while helping us get a lot of information shared in short order. The effort resulted in overall helpful materials for parents (and others) with a few slipups that I ask be forgiven, like any other proofreading error, and will be adjusted on future print editions, and hopefully sooner on Kindle formats.
Oh, and about the Kindle formats. I love hard copy books, I like to highlight and earmark and all of that, HOWEVER, I strongly encourage folks who want to utilize the links to take advantage of the Kindle or Nook version on your tablet or computer when possible. This will make the hyperlinks supplied at your fingertips and easier to follow-up. (I’m pretty excited about this collection of links, actually.)
Enough About Me
A key and unique component to this project is the wide variety of parental opinions, voices, and experiences that are included. We are blessed to have had so many willing families come together to share their stories.
We are also blessed to have people willing to review and share the book with their networks. Please follow along now to the link here for two great perks:
Number One: Links to the first reviews of The Parents Guide to Down Syndrome.
Number Two: A grand prize giveaway. You heard it here! A giveaway that includes a copy of the book, The Parent’s Guide to Down Syndrome, copies of other books that are excellent resources for parents, a few fun stickers and bookmarks, an “I love someone with Down syndrome” tote, and if you’re in information geek like me this is the real kicker, a registration to this years 321 eConference which is an incredible resource for parents, educators, and medical professionals that work with and love people with Down syndrome. *Note the link-up and the Giveaway begin on January 1st, 2016.
Can’t wait? Ready to read the book? I hope so! Follow this button to
Originally published at www.mardrasikora.com on December 29, 2015.