defining moments

 

“I yam what I yam.”   

~ Popeye

When Katie was on the Ralph Lauren shoot, one of the kid wranglers had the little ones in stitches with her rendition of the Little Einsteins theme song. “We’re going on a trip in our favorite rocket ship/ Zooming through the sky / the little Ralph Lauren models.” Katie loved the wrangler and she thought it was the funniest thing she’d ever heard.   

When we came home and settled back into reality, I had a talk with her about why it is so important to remember that although she had just had an amazing experience, it did not change who she is. We talked about the fact that some of her friends might ask about her trip and that she would need to be very careful about the way that she presented her answers so as to avoid sounding boastful.

At one point she said, “But Mama, I am a model now.” I cringed as I explained that, no, my love, you are not a model now. I told her that she is a child. An amazing, breathtakingly bright and sensitive child. She is a sister. She is a daughter. She is a second grader who ice skates, sings, and creates fabulous art. She is generous and loving and creative beyond measure. She is a wonderful little person who has had some incredible experiences. In other words, she is a kid who was lucky enough to have gotten a chance to do some modeling, but that does not make her a model.

It terrified me to think that a seven year-old, my seven year-old, could define herself with this one thing that she had done.

And it struck me that we all allow one thing to define us at times. Obviously, as we get older, we are more easily categorized. Someone who teaches is a teacher; someone who writes is a writer. Someone who stays home with his or her children is a stay-at-home parent. {Caution random rant about to begin.} Please, for heaven’s sake don’t call them ‘full-time’ parents. With all due respect, I cannot and will not abide by the converse implication that I am a ‘part-time’ mother. I don’t know about you, but there is never a time when I am NOT a mother. {Random rant comes to a close.}

But this definition thing, there’s more to it, isn’t there? Am I simply a mom? Or do I need to say that I am a special needs mom? An autism mom? A mom of two? A working mom? A tired mom? Well, yes. I am all of those things. I am also a wife and a daughter and a sister and a cousin and a damn good friend. I am an awareness advocate (Autism Speaks said so, so it’s got to be true). I am a board member-at-large (I love that one), a PTO liaison, a mama blogger, an amateur photographer. I’m a shopper extraordinaire, a children’s fashion aficionado. I’m a woman with a shoe problem. I’m a resource for parents. I’m a Rock of Love addict. There I said it. Don’t judge.

Point is, the list could go on for a while. And it leads me to the real purpose of this exercise.

None of us can be defined by one aspect of who we are. Especially our children. It’s absurd.

My younger daughter has autism. But autism is not who or what she is. I do not discount that her autism colors her entire experience. Her character shines through it but cannot necessarily be separated from it. Autism is the filter through which she sees, smells, hears, touches and tastes most of her world. But it is not HER.

She is funny. She is sweet. She is beautiful. She has a smile that lights up a room. She is caring and generous and has a mind like a steel trap (yes, Dad, I stole that expression among scores of others). She harnesses the energy of the universe when she laughs.

I used to bristle at the PC nature of ‘person first’ language. Who cares if I say I have an autistic daughter rather than saying I have a daughter who has autism? I was sure that the difference was nothing more than semantic.

But I get it now. I really do. Because if I’m going to say that I have an autistic daughter, I may as well say that I have a funny, sweet, beautiful, caring, generous, smart, brown haired, brown eyed, caramel skinned autistic daughter whose favorite color is red, number is 2, letter is Y. All of those aspects of her being are important. None of them alone captures her essence any more or less than any other.

My daughter has autism. I refuse to let autism have her.

Ed note – I googled ‘person first’ language in hopes of hot-linking the term to a site that might offer readers some further insight into its meaning. When I did, I came upon this wonderful essay written by Jim Sinclair, an autistic person on why he would prefer that we call him just that. Read it. See what you think. I agree that the societal connotation of autism is the real culprit here. We’re working on that. Hence one of my myriad titles ‘awareness advocate.’ But I still don’t want my daughter reduced to this one aspect of who she is – good, bad or otherwise – no matter how over-arching it may be. No more than I want her sister to think of herself as ‘a model’ at age seven.

Maybe someday Brooke will look at me and say, “Mama, you got it all wrong. That guy was right.” I can’t wait for that day. I will gladly defer. In the meantime, I have to do my best to worry and whittle and knead out the path that I think makes the most sense. I’d love to hear what you think.

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10 thoughts on “defining moments

  1. Well, Tatum looks at Katie as a model! I told her, and I agreed that yes she is. I don’t think it’s as complex for a 6 and 7 year old. I feel we tend to over think, and try and consider others. But to children at this age, I really don’t think they look at is we do. Also, Have you seen my hat collection? I am sure you have similar ones. I carry ALL of them at ALL times, yes they are invisable, but I am able to put them on in whim, and on an as need basis!
    LOVE

  2. I love what you wrote about autism coloring Brooke’s experience, “her character shines through it but cannot necessarily be separated from it.” Such a great description. We are, in fact, many things and may have many different labels. I believe that our special needs children have so many more layers than we even realize, and the opportunity to spend this life discovering all the things that define them is a true blessing.

  3. oh yeah. you and luau have raised your girls so well. i bet katie already “gets it” about gratefulness and humility. but i so appreciate that you are diligent about teaching her those things.

  4. Jess,

    You did it again! You get people thinking!

    It reminds me of the time I got my Captain’s License from the US Coast Guard so that I could run a boat and receive remuneration. Well, I was very proud. Then I spoke to my brother who worked for the Govt.and visited with Admirals etc.

    His quote was something like this; ” By you, you’re a Captain! But by a CAPTAIN, you’re no CAPTAIN”!

    Your comment to Katie was right on and I’m sure she got the message.

    More importantly, you brought up the question of one’s defining oneself. That’s a big one! I’ll have to put it in my hopper.

    Love,

    Bud

  5. Well said Ms. Tomato!

    Part time Mother indeed! Like everything we do for the little darlings whether they are with us are not all day long isn’t largely for their benefit. Labels don’t define people anyway!

    Love,

    Ms. Tomatoe!

    aka Blonde with Stupidity Problem as oppposed to Stupid Blonde.

  6. Jess, it’s all in how you present it.

    Consider for a moment how people might introduce me:
    This is John, a successful fellow who also has Asperger’s syndrome. . .

    Now, what does that bring to mind? For some people, it says, Here’s this guy who did sort of OK despite being some kind of cripple or freak.

    I’m not too troubled by such introductions now, because I have ended up OK, and I can move on to point that out quickly. But what if I hadn’t that life experience to validate me? Then, I’d see myself as sort of diminished.

    So the phrase “has Asperger’s syndrome” sort of diminishes me if you utter it.

    Now, what if the person says, This is John, a Free Range Aspergian!

    Who knows what that is? Whatever it is, it does not diminish me. It’s kind of a kick ass and take names intro where the other is weak and whiney. I’d regard Free Range Aspergian as an empowering description because it’s positive, assertive, and unusual.

    In those two examples, which represent real ways people have introduced me at events, you see two totally different presentations of what I might be.

    OK, so now to your daughter . . .

    At her age, when you say, She has autism, you are often saying it to excuse some strange behavior. That’s a difference between kids and grownups . . . most of us grownups know sort of how to behave, autism or not. And when we’re weird, no one offers excuses for us.

    In your kid situations, some kind of explanation may be needed. So what do you say? I think if you say something to explain strange behavior, She has autism is fine. But if you are introducing her to a mom, apropos of nothing, I’d describe her as, Gifted with neurological differences. That is a more empowering descriptor for a child who has not done anything totally weird. Yet.

    And it opens the door to describe what she may become, not what she may appear at that moment. Because, as I’ve said, when you look at a child on the spectrum it’s the handicap components of autism that stand out to strangers. When you look at a grownup like me or Temple Grandin, it’s the opposite – it’s the gifts you see.

    So my descriptor opens the door to present that transition, which is indeed a lot more positive and hopeful. And it’s real, as evidenced by us and countless other successful free range Aspergians.

  7. Labels can be useful, and they can be harmful, and they can be limiting, and they can be liberating. For me, it’s all about who you’re sharing it and why.

    For example, take your label as a Rock of Love addict. I … Er… I had a point here, but I am totally wonked out by this little tidbit about you. You watch that show with the hairkerchief guy and his scary hairem? I just don’t know what to do with this information. My brain is short-circuiting. Can’t compute. I……fa;sflajfmnkdzvncji;a;sfdsafeav yt/. . . ?

  8. You missed a label for Brooke. Because the way my daughter sees it, the only label that she would recognize is “Beloved Friend.”

    Okay, maybe “Giggle Buddy.” But that’s it.

    There. Try to un-Pollyanna *that* one.

  9. In recent years, I say both about Nigel – he has autism and he is autistic. But, of course, he is so much more than that. The people who take a little time to get to know him realize it. And anyone who does the same with Brooke will realize that there is so much more to her, no matter how you phrase her neurological difference.

  10. Thank you all ..

    Paige, you and your beautiful daughter are such gifts to us

    Jenn, I shall heretofor call you ‘girl who kicks ass from New Jersey’ rather than my kick ass Jersey girl

    Mara, I once saw Brett Michaels without the doo rag bandana thing and I nearly clawed my eyes out. It was awful. But as long as he keeps that thing on, I’m watching his rip roaring train wreck of a show. I cannot fathom a more complete break from my reality.

    John, I am so grateful for your insightful comments, particularly in the midst of your book tour .. (my friends, if you don’t yet have your paperback copy of Look Me In The Eye .. well, what the heck are you waiting for???)

    I’m pondering Autismian. Autismitonian? Autismanese? Yeah, it needs work.

    ‘When you look at a grownup like me or Temple Grandin, it’s the opposite – it’s the gifts you see.’

    Amen.

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