Let me start with my reservations. I'm at a point where I am seriously tired of parents' voices. There are too many of them, and I think too often in certain communities they drown out those voices with disabilities. I struggle everyday with how I want to write about my beasties. I've started to write less about disability (at least the ones that belong to my children) because I just feel like I might be adding to the noise. So when Jen asked me to hop on the blog book tour, I said yes but as time went on I wondered if I could do that with a clear conscience. This just might be I'm writing this review on the last day. That and ya'll know I procrastinate something fierce.
I'll begin by saying that the introduction won me over. A section of self-advocacy? Yes please!
And "The combination of genetics, environment, science, and love that makes every person unique is not erased or diminished by Down syndrome." Finally. Your kid is your kid is your kid. Period. Now for the review.
First, the emphasis on the positive. Yes the book is relentlessly upbeat. While I'm not normally a Ms. Sunshine kind of person, I appreciate this approach. The book we all read that covers Down syndrome (baby in the pool on cover) freaked me out so much I refused to let H read it. Not only did the listing of every medical condition known to medical science turn me off but the barrage of negative parent stories made me sob late into the night. I just wanted one person to be happy with their new baby. It was there but so rarely it felt more like an anomaly.
Two, through but not terrifying listings of possible conditions. These were also paced well so that you are not barraged with a list of all that could go wrong. I think this is very important to new parents. You want them to enjoy their babes not be worrying about everything that could go wrong or is going wrong. I think the authors managed that line between informed and terrified well.
Three, parental voices don't dominate. Well I mean they kind of do because Jen and Mardra are parents but they use the parental antidotes well. There are sometimes snippets and in other places longer pieces. But these stories don't overwhelm the narrative, and really just change up the pace. I think there is a place for parental stories of course but I'm glad they didn't dominant the book.
Four, there are voices from people with Down syndrome. I would have loved this when I found out about Jude having Down syndrome. And not just their own stories but blurbs on what people with Down syndrome are doing in the broader world. Really encouraging without always falling on the Down syndrome Rock Star mentality.
Five, the book will be a good resource for years. Since the book doesn't skimp on the grown up side of things, I feel like I could turn to this book today or ten years from now and find information.
Six, a great list of resources that range from books to organizations to blogs. It should provide something for everyone.
There's not much I can criticize. Being me, I would haven't minded a bit more on activism. Not just from the parents perspective but maybe more of a tie in with the broader disability community. I also think some pieces about how racial profiles change some of this information. All of this is there I just wish it had been there a bit stronger.
I would have liked more positive diagnosis stories. Again they were there but I didn't feel like they had equal voice with the grief narrative.
As has been mentioned in some other reviews, I would have liked to see more about dual diagnosis including mental illnesses.
Regardless of it's minor flaws, this book should grace every welcome basket being given out to new parents. It's an excellent resource period.
Here's the information on the give away!
If you're interested in buying for yourself or for you local group, here are a few resources:
Barnes and Nobles