telling kids (and moms) the truth

quiet girl

“something is wrong with my voice.”

every once in a while mazzy will ask her dad or i this question.

“what’s wrong with my voice?”

pink

hat

and we know what she means.

she means that she loves to sing, but when she opens her mouth it doesn’t sound the same as the songs she adores.  she means that she watches her brother and sister walk up on stages and sing from their hearts, but she sits in the seats and watches.

she means this – what is wrong with me?

perfect

when mazzy was six months old we started working with a communication specialist.

he’d spent his career working with kids with disabilities and their parents with the strongly held conviction that nothing was wrong with these kids.  he taught their parents how to slow down long enough to get into their children’s worlds.

i remember the first time he said it to me.

“there is nothing wrong with mazzy.”

he said it and he knew i didn’t believe it.

he said those words and something in me broke.  it was my heart.  and it broke because of how blind i was, how wrong.

but it’s a funny thing about broken hearts – they get softer afterwards.  my heart before those words was hardened against people who had down syndrome, even my own flesh and blood.  i needed words strong enough to break a stone heart.  and we all know what kind of words do that.

true words.

mazzy

so when mazzy asks us what is wrong with her voice, we always tell her the truth.

“nothing mazzy.  nothing is wrong with your voice.  you have a beautiful voice!  i love to hear your voice!”

and she looks at us hopeful, wondering if we are telling the truth.

we look right back into her lovely face without deceit and let her know that yes, we’re telling the truth – there is no flaw in you.

today is world down syndrome day – take a minute and watch the video below.  it’s so worth your time.

8 thoughts on “telling kids (and moms) the truth

  1. Oh thank you for this post…once again you have told me exactly what I needed to hear…and of course made me cry as it went to my heart. Karen 🙂
    Oh, and I love the pink hat too!!!

  2. A few things-

    1. That hat is everything.
    2. You know I love me some snow pants.
    3. Hearing Mazzy call me, “her Bethany” makes my heart happy.
    4. You tell Mazz I can’t sing either, but, like her, I can still get down.
    5. I miss you guys.

  3. karen – thank you for your reading eyes…

    and bethany – i miss you! and yes, i know you love you some snow pants. i’m texting you tonight!

  4. As a mother of a young adult DS daughter, your response to your daughter deeply concerns me. It’s cruel, damaging even.

    I don’t know the cognitive level of your daughter, but this is bad business in not being upfront and honest about why she can’t speak and sing like those around her. You aren’t deceiving her as much as you are deceiving yourself. She knows that something is different and you are attempting to gloss over her very valid worries about it.

    As she grows older, she’ll see more clearly than she can’t keep up in conversations and you are setting her up for disappointment. In your own way, since you know her best, have the hard conversation about why she won’t speak like those around her. The therapist did you no favors by saying she speaks like others. It doesn’t mean that the way she speaks is wrong, but why keep her in the bubble? You’ve written before about the merging of your identity with your daughter.

    Your daughter isn’t afraid of her own voice – and DS kids do not speak like typical people – why are you afraid to confront that.

    It’s not easy and be prepared for many tears, but it is in the best interest of your daughter to reduce the illusion that all is the same. No one wins, especially your daughter.

  5. Vanessa,

    I don’t think Zena is trying to gloss over the difference.

    I think she’s teaching Mazzy that there’s nothing fundamentally wrong with being exactly the way she is. And that determining your self-worth by comparing yourself to the rest of the world — especially in the case of people like our daughters — does not make for a good life.

    The conversation that you’re encouraging, the one where we talk about the ways that Mazz is patently different from the people around her– that’s a different conversation, and one that we have had and will continue to have. It’s the conversation to have when the question is “Why is my voice not like other people’s?”

    But Zena, in the above post, is very clear that she’s not not answering that particular question. She’s answering the question underneath that one, which is: “What’s wrong with me?” And I think she’s answering it correctly: there’s nothing wrong with Mazzy. It’s okay to be exactly how you are. Different ≠ wrong.

  6. hey vanessa,

    thanks for your comment. and i want you to know that i hear you – i appreciate joshua’s answer because it holds the meaning behind my post – but i do hear what you are saying, too.

    the conversations about mazzy’s differences are as real as the ones that affirm her as a whole person. and we do have them – but i can handle being prodded to look at that closer.

    like the title says, telling kids (and moms!) the truth.

    take care,
    zena

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