I remember very well struggling with what to tell our other kids about Finn. I wrote about it here. I remember not wanting to scare them, and not wanting to portray Down syndrome in a way that would make Finn seem like less than to his siblings. It was somewhat of a challenge – at least anticipating the conversation – because Michael and I really knew so little about Down syndrome ourselves at the time. In the end, we were just very matter-of-fact with the kids. That tends to be the way we handle most topics with our kids – no beating around the bush, no sugar-coating. Of course we are always mindful of what’s age-appropriate, but I’m not a fan of turning the facts of life into fairy tales for my kids. It’s about respecting them as developing, autonomous human beings: trust that they can handle things provided we the parents have equipped them with age appropriate coping skills and wisdom. Sheltering them by making up stories does nobody any favors in the end.
Another thing to consider is that kids will almost always follow the cues of the adults in their lives. If the adults present issues matter-of-factly with appropriate optimism and/or gravity, the kids will usually follow suit. We have found that to be true over and over with our kids with issues ranging from Down syndrome, to death, to how babies are made, to Daddy having cancer. The kids are generally not going to freak out if the parents aren’t freaking out.
And so, it is difficult for me to understand Missy Vaughn’s desire to frame her son’s Down syndrome in terms of a caricature, or fairy tale character. But certainly, to each his own. It’s not up to me to tell her or anyone how to parent their children. However, she seems intent on promoting her book as a tool for everyone to discuss Down syndrome – parents and other family members, educators, librarians, and so forth. Her supporters are suggesting (on Amazon) that it’s a wonderful book for children and adults alike.
In addition to remembering what it was like to talk about Down syndrome with our other kids in those early days and weeks, I also remember my own fears and misconceptions as a new parent to a child with Down syndrome, having had virtually no prior exposure to, and therefore virtually no real knowledge of, Down syndrome. One of the biggest, and I believe most widespread fears among new parents of a child with Down syndrome is that the child is going to remain forever childlike and utterly dependent (Ms. Vaughn said herself in an early blog post:
“One of my thoughts I had said was that I don’t want to change a 40 year old’s diapers. I Don’t want to have a kid the rest of my life.”
So it’s interesting that she went on to write and publish a book that glorifies that very notion: that kids with Down syndrome remain childlike forever (or at least want to, which the author has repeatedly said in defense of her book; I’m scratching my head, wondering how she knows that kids with Ds don’t want to grow up). I won’t guess at the psychological process that went into her coming to this conclusion, but I will say that as a new parent, if this book had landed in my hands, I would have cried my eyes out. It would not have comforted me or encouraged me – it would have confirmed exactly what I was most afraid of: that my kid was never going to grow up. So I think for this reason alone, Ms. Vaughn is sorely misguided in thinking that her book will be helpful to new parents.
She also emphasizes, as do her supporters (and it should be noted that the vast majority of people she has recruited to post glowing reviews of her book on Amazon are close to her personally but do not themselves have any direct connection to Down syndrome beyond her), that her book is intended for young children. As I said in the comments section of my last post, my (as well as many others’) feeling is that young children comprise the very worst possible audience for this book and its message. Young children are extremely impressionable, and having Down syndrome equated with Peter Pan will only sow the seeds for their acceptance of misconceptions and stereotypes. Children, even very young children, deserve facts, not fairy tales. Furthermore, insisting that the book is intended for young children completely ignores the fact that it will be adults reading the book to those young children; thus, adults are asked to accept and embrace the book’s message as well.
It saddens me that the author seems unwilling to take a step back and look at this from a broader perspective. If her true intention is to be an instrument that benefits the Down syndrome community, then she would better serve everyone by setting aside her own personal feelings and really listening to what people are saying about her book. Nobody is setting out to be mean to her or to squelch her dream of being an author; our concerns are genuine, heartfelt, and valid. To call oneself an advocate and then wilfully brush off members of the very audience one is targeting who are saying “Hey, your message hurts. Can you reconsider it, please?” is not true advocacy. It seems that Ms. Vaughn has lost sight of her original goal and is now only tenaciously holding onto her position at any cost.