My Kid Isn’t (Like) Peter Pan

A while back I posted this review of Missy Vaughn’s I Live With Peter Pan, a self-published book aimed at explaining Down syndrome to young children.  As I stated in my review, I didn’t care for the book, as I feel that, however well-intentioned it might be, it paints an unfair picture of Down syndrome and does a disservice to those touched by Down syndrome.

Normally, I read a book, post a review and that’s that.  There are good books out there and not-so-good books.  Sometimes, however, a book keeps drawing me back.  The Shape of the Eye was like that; it’s so full of good information and skillful writing that I really wanted to promote it.

I Live With Peter Pan keeps drawing me back, too, but not in a positive way.  It’s more than the fact that I feel that the premise of the book promulgates an offensive stereotype – it’s the fact that the author has undertaken a zealous campaign to promote her book as a learning tool, with hopes and efforts being made to get as many copies of the book as possible into the hands of families of children with Down syndrome, as well as schools.

Though I did have a brief interaction with the author after I posted my review a few weeks ago (and not a very friendly one), my goal is not to launch personal attacks on her.  I have no doubt that she loves her son and feels that she has undertaken a positive endeavor in writing, publishing, and marketing her book.  That said, I strongly object to equating children with Down syndrome to Peter Pan, who never grew up or never wanted to grow up.  I think her belief that this is a positive analogy is extremely misguided, and rather than being an instrument of advocacy, or even accurate teaching, it encourages misconceptions and sets ideas about Down syndrome back at least a couple of decades.

Let me be clear: Finn is no Peter Pan.  He’s a kid who may be different in some ways, but a kid nonetheless, and one whom I have no doubt will grow up and do things that will blow my socks off.  I don’t want him held back by this notion that he will always remain charmingly childlike.  I’m not kidding myself; I know that Finn will always have certain limitations, but who knows what those limitations might be?  So Michael and I and Finn’s brothers and sisters will continue to shoot for the stars when it comes to the possibilities of Finn’s life.

Because I feel so strongly about this, I am heartsick over the fact that Missy Vaughn, and some no doubt well-meaning friends and family of hers, want to put this book, I Live With Peter Pan, into the hands of families and schoolchildren – the vast majority of whom will likely have had no previous exposure to Down syndrome.  This is not what I want people to learn about Down syndrome.  This is not what I want people to learn about my son.

So I make an appeal here: if you object to children with Down syndrome being painted as caricatures, being boxed in by stereotypes, being equated to the likes of Peter Pan, then please speak up.  Talk about it, spread the word, and let the author know that however well-intended her message might be, it’s not one that the greater Down syndrome community wants to see promoted.

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16 Comments on “My Kid Isn’t (Like) Peter Pan”

  1. mdbeau
    January 6, 2012 at 1:33 am #

    I read a blog of a mother who has an adult daughter w/Ds. Last year she linked to another of her adult daughter’s blogs and a post titled Forever In Neverland ( I’m sure you can guess what it was about… her and another sister feel like their sister w/Ds is like Peter Pan.
    Since Kayla was born I have hated the analogy about kids w/Ds never growing up, always being child-like etc. The more I heard it the more I wanted to rebel against. The more I wanted to scream yes my child is going to grow up! She’s going to hit the teen years, her 20s, her 30s etc. She’s going to be an adult! It’s been a sore spot for me.
    A few months ago I saw on FB this youtube(?) I think video going around introducing this new book from a mother w/a child w/Ds. I was intrigued. Then it got to the Peter Pan part and my heart sunk. I had much the same thoughts as you. People are going to read this and continue to treat not just my daughter, but kids w/Ds, as babies/toddlers/kids for much longer than they are. I hate when people talk down to Kayla (and by that I mean talking to her as if she’s much younger than her age). She is behind, she is delayed, but she doesn’t need to be talked to as if she is a young toddler. And that’s not how I want people to think of her, or treat her. That’s not how my husband and I talk/treat her and it’s not how we’re raising her. I want people to see her as an equal to her same-age peers, as much as she can be with her delays. But if people don’t give her that chance because of stereotypes, then where are we?
    But after reading the first blog post, and then reading about this book and how similar both are … I started to think maybe it’s just me? Maybe I’m just in denial about everything?
    Thanks for writing a post I can identify with (and sorry for my long comment!)

    • Heather Stewart Seal
      January 7, 2012 at 5:08 am #

      When I read Lisa’s post the first time, I wasn’t too bothered by the comparison but after I read this blog post that Michelle referenced, I was disheartened and discouraged. I hope my children never feel that way about their sister. It was such a depressing post and analogy.

  2. D. Fowler
    January 6, 2012 at 4:04 am #

    This is the same type & kind of attitude people took to burning books long ago. Freaking out because you do not agree. That the words spoken on the page will somehow set the world back 20+ years. (I realize that statement may be a bit over the top, but I’m sure you can understand from where I am coming as you read on.)

    Frankly if you have a better way to describe Ds then write a book about it. Oh wait, you would rather just throw rocks from the sideline.

    Lest you forget, the book is aimed at very small children. Children with little or no understanding as to what is Ds & how it will effect, in this case, their new little brother. Clearly it’s intent is not to educate all ages. There are wonderful book out there addressing Ds from others prospective and with greater detail.

    If your intent is to not provide a personal attack yet you go out of your way not only to just disagree with the book but to promote a total attack on both the book & it’s message. It’s truly sad that you would promote such a closed minded mind set. Not everyone sees this book as you do & thank goodness for that. Many see this book as a celebration of a young child with Ds. Some see this as a tool that can be used to assist in this understanding. I highly doubt the author would expect this book of 47 pages would cover the complete conversation more over it can be a starting place and a tool to begin the conversation.

    The use of Peter Pan as a reference would make sense when holding a conversation with small children. There is room enough in this world for deferring opinions & clearly we do not agree with each other on this subject. Thank you however for being willing to hear differing thoughts on this matter.

    You have had your say & now so have I. Thanks for your time.

    • Lisa
      January 6, 2012 at 4:45 am #

      Yes, you’re right, everyone is entitled to their own opinions and perceptions. But when someone is attempting to promote materials that impact how MY child is viewed, I have some pretty strong feelings about it. I’m not suggesting book burning, or even banning; what I’m suggesting is discussion. Clearly the author has a posse of friends and family who are willing to go to great lengths to support her creative endeavors, but I wonder how many of them have a child with Down syndrome. Do you have a child with Down syndrome? How would these people feel if THEIR child was being stereotyped?

      I have young children myself; Finn is the youngest of six at this time. When he was born and we received his diagnosis, his siblings were ages not-quite-2, 4, 6, and 11. While I understand the dilemma of explaining something potentially scary to young children, I never saw the need for analogies or cartoonish stereotypes or sugar-coated explanations. We were frank with our kids, as we tend to be regarding most sensitive topics, and they appreciated that and seemed to do just fine with the information.

      “Very young children” – the audience this book is mainly targeting – is the worst possible audience, in my opinion. Young children are impressionable, and it saddens me to think that this is the first perception of Down syndrome soem of them might receive. It will succeed in planting the seeds for their own misconceptions and stereotypical views of people with Down syndrome.

      It cannot be denied that Ms. Vaughn’s message is offensive to some; she’s been told that her message is harmful and offensive. To deny that is only to deny that anyone but her has any valid feelings.

  3. CJ
    January 6, 2012 at 3:38 pm #

    This may very well be the author’s thoughts/perceptions/experience with her own son, but it’s not one that applies to the vast majority of parents of (and individuals with) Down syndrome.

  4. Diane Miller Sheets
    January 6, 2012 at 6:09 pm #

    I haven’t read the book, but I understand where you are coming from, Lisa. I have to wonder if this author is one of those people who feels uncomfortable talking to young kids about things in an honest and frank manner. Sure, we have to pose conversations to young children in a manner they will understand, but that does not mean we have to “dumb it up” or refer to cartoons or stereotypes to reach their understanding. State the facts but keep them simple … “your brother/sister will be able to do the same things you can do, but it will take longer to learn them” … at what age does this not make sense?
    I wish parents would see that this only creates more work for them in the future – to untwist the picture you’ve given your child and set it straight as they get older.

  5. H. G.
    January 6, 2012 at 6:38 pm #

    Missing my own little brother who has disability, I decided to try and offset the cost of university by getting a job doing respite work through an agency. During the interview my perspective boss said “I know why you love working with people with disabilities- I do too! No matter what, they just never have a bad day! it’s joyful!”

    That misconception puts the same bad feeling in my stomach as the idea in this book. My now not-so-little brother is growing up, as I am. Along the way there has been, and will be, big meltdowns, great challenges, amazing triumphs and loud laughter. I cannot wait to see the man he will become. I am excited for the man your Finn will become.

    I am so glad no body told the 4 year old me that I didn’t have that to look forward to. I am glad, and better because, my parents closed their mind to the idea that we couldn’t or wouldn’t have that. I am grateful you have thought critiquely about that and made your concerns known. Defending your child shouldn’t be called rock throwing but if that is what you have to do, all your children will be better for it. I know I am. I would ‘throw rocks’ for my brother too. Thank you for making this blog and being actively NOT on the side line.

  6. Molly
    January 7, 2012 at 1:33 pm #

    So what I’m getting from D. Fowler is that we shouldn’t demand respect and an accurate portrayal of the people we love. We would protest if an antiquated book came out about african american children. We voice our opinions now. We try to be as respectful as possible, but this is NOT how I want my friends with DS portrayed because it is NOT how they are. There are far more 30 year old men living in their parents basements playing video games all day that could be referred to as “peter pans” than the kids and adults that I know with DS.

    • HG
      January 8, 2012 at 2:57 am #

      well said.

  7. Molly
    January 7, 2012 at 1:33 pm #

    side note: Lisa, apparently the solution to this is to write a book about DS. I’m in. Lets write a book!

    • Lisa
      January 7, 2012 at 11:37 pm #

      I’ve got one floating around in my head already 🙂

  8. Molly
    January 7, 2012 at 11:25 pm #

    Also, Lisa, do you still have the boook? Would I be able to read it? I’ll pay for shipping!

    • Lisa
      January 7, 2012 at 11:37 pm #

      Molly, I don’t have the book anymore, as I passed it along to someone else. There are photos of some of the pages up on my FB page if you want to look me up on FB.

      • Molly
        January 15, 2012 at 11:32 pm #

        Ok! Friended you!

  9. mumofone
    January 8, 2012 at 12:28 am #

    Actually what I learned from D Fowler is that when trying to make your point you should be:
    1/. Irrational –
    “This is the same type & kind of attitude people took to burning books long ago. Freaking out because you do not agree”
    2/. Aggressive –
    “Frankly if you have a better way to describe Ds then write a book about it. Oh wait, you would rather just throw rocks from the sideline.”
    3/. Condescending –
    “Lest you forget, the book is aimed at very small children.”
    4/. Patronising –
    “Children with little or no understanding as to what is Ds”
    5/. Snide –
    “Not everyone sees this book as you do & thank goodness for that.”
    And somehow that will endear the reader to accepting his/her point of view.

  10. amy fleg
    January 24, 2012 at 1:35 pm #

    way to go lisa!!!

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