a start

*

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

~ It’s For Me, Sept, 2010

Last night ..

We’re sitting at the kitchen table eating dinner.

“Katie,” Luau says, “do you remember that I’ll be at your school tomorrow?”

Of course not. She doesn’t remember what you told her thirty seconds ago. It’s the first tenet of tweendom – Thou shalt not retain anything a parent tells you. She looks at him like he has three heads.

“I’m presenting to the fifth graders as part of the inclusion initiative,” he says. “And I’m going to be talking about Autism Spectrum Disorder. So I wanted to ask you – would you be comfortable if I mentioned that Brooke has autism when I talk to the fifth graders?”

I try to get his attention without making a fuss.

I want to make this stop.

Not because it isn’t a perfectly valid question. It is. And I understand why he’s asking it of Katie – he’s presenting to her and her classmates. But the question needs to be Brooke’s first. And then it can be Katie’s.

This is out of order.

It’s backward.

Katie answers. “Yeah, of course. That’s fine.”

Luau finally looks at me, sees the urgency in my face. I motion toward Brooke.

“I was going to ask you if …” he says to me.

“Ask BROOKE,” I say.

I don’t realize that I’ve been holding my breath.

“Brooke, honey,” he says, “You know how we’ve talked about autism before?”

We’ve had these conversations. Lots of them. They are always one-sided. It is what it is. So no one at the table expects what happens next.

“What’s ott-izum?” she asks.

The word.

She’s never said the word before.

It sounds so strange on her lips.

In her voice.

I can’t process it in real time.

I stow it away – tuck it safely in a spot where I can break it down later. I’ve got to stay present.

Luau looks at me. I look at him. There’s an excruciatingly awkward twenty seconds in which neither of us is ready to speak.

But Katie is.

“May I say, please? I can tell her.”

Luau looks reticent. He starts to say something. I stop him.

“I trust her,” I say. “Go ahead, Katie.”

Katie looks at her sister. Her face is soft and gentle.

“Brooke, autism is what makes your mind special.”

“It is?” Brooke asks.

“Yep, it can be what makes some things hard for you sometimes, but mostly it’s part of what makes you really cool.”

“It is?”

I wink at Katie. Job well done, kiddo. Then I turn to Brooke. “Honey,” I begin, “do you remember when we went to the Autism Walk?”

Her face lights up with recognition.

“Yeah, and we won!”

I laugh. “Yes, and we won. But do you remember how we talked about how a whole bunch of kids there had autism just like you?”

“Yeah.”

“Well, like Katie said, autism is something that makes your brain a little different. It’s part of what helps you remember all those lines from movies and books. And that’s pretty neat, isn’t it?”

“Yeah.”

“And sometimes it’s also what makes some things kinda tough. Like when you get overwhelmed in places that are too loud – like when we go the mall and there are babies there. But more than anything, it’s just part of what makes you you. Kinda cool, huh?”

Luau watches her intently.

“So Brooke,” he says. “is it ok with you if I tell the fifth graders that you have autism?”

“Yeah.”

There’s so much more to say.

More than we will be able to say in a lifetime of words.

For now, we ride the surface.

Later we will dive in – deeper and deeper as she’s ready.

The conversation may not be how I envisioned it, but what ever is?

I may not have said everything I wanted to say, but who ever does?

There is so much more to say.

There will always be more to say.

But it’s a start.

Ed note: To read more about why I think that disclosure is so important, but please click HERE and on the links above (in blue.)

Ed other note: I am honored to be guest posting today at The Oxygen Mask Project talking about accepting help. So if you’re up for a double-header of Diary, please click on over! I’d love to see you there.

39 thoughts on “a start

  1. The conversation was beyond perfect for now. It was exactly what it needed to be. I’m so proud of all of you!

    Love you,
    Mom

  2. Sometimes the way it actually happens is even better than if you had planned it. And I really couldn’t love your family more than right at this moment.

  3. Oh you are making me tear up first thing in the morning. How beautiful. How beautiful for all of you. Jake’s issues with language processing and his struggles with abstraction make him so far from this still. But… someday… maybe.

  4. Remember….? Baby steps that soon turn into quantum leaps. Those words (from you) have stuck with me…and I think they apply here for sure. This, in a way, is BOTH. The conversation was perfect! Just as much as her brain can process for now. And your Katie, once again, never ceases to amaze! xoxoxoxox

  5. WTG family! I am not suprised that Katie did an awesome job explaining autism to her sister. Siblings have such a powerful impact and can get messages across in ways that we parents can’t. One step at a time.

  6. I couldn’t love Katie more if I tried. I have been wrestling with what words to use with my munchkin. Hope she won’t mind if I use hers. And PLEASE give her a great big hug for me please. As well as a giant thank you. (and you too Missy Jayseeca. I love you most of all!)

  7. I’m going to stop leaving comments saying, “great post” after today, I think. . . it’s starting to get redundant.

    I’m such a sucker for the big sister / little sister relationship.

  8. When I mentioned to my son that I would be doing the half marathon for Autism Speaks (thanks to your hubby….) we had a conversation about autism that nearly killed me – he asked “when I grow up and have kids will they have autism too?” Still makes me cry just to type it.

  9. I love how Katie was able to explain Autism to Brooke. Siblings have an such a way with each other…
    Also, it is because of you and your “full disclosure” policy that we talk openly and freely about our oldest’s processing and language issues, and about our second-born’s Autism. Our hope is that someday they can join in the conversation with us.

  10. A wonderful start. We are at the one-sided conversations right now too, and I’ve only done a few of them.

    The way Katie explained it made my eyes well up. She’s absolutely, 100% spot on. Well done big sis.

    xo

    • I told my 8 year old one month ago. I made the conversation very much about the brain – how autism causes his brain to get stuck on things, makes things harder for him to understand. The word ‘autism’ has been part of conversations (where he is in the room listening even if it looks like he is not) with Doctors, Therapists, Teachers, Parents, Friends since he was diagnosed. It was a word that he was very familiar with, not foreign; a secret; unspoken; whispered. Our kids deserve honesty so that they are not ashamed of who they are. Yes, it is our decision when the time is right to tell them and when we think they can understand the information. But I think they already know. He just shrugged his shoulders and said, “OK Mama”. And that is when I truly believed, it is OK.

    • It’s different for everyone. We didn’t really discuss it until mine was almost 10, and even then, I’m not sure if it makes sense or even matters to her. The most important part for us was to keep it neutral, like Jess. Good parts and hard parts, just like any part of life.

  11. Happy tears pouring down my face….simply magical. We have already had this conversation with my son but the magnitude of it continues to overwhelm me. Many more conversations still need to happen so my boy, all our kids, can understand who they are, without shame. Well done Katie!

  12. What a great BIG SISTER, and what a great family conversation. Caring and knowlege has a great home in your house…
    Love you all,
    Dad

  13. when she says she won the autism walk, that’s just the cutest thing in the world.

    i’m always moved by these posts because i learned about AS in a way that was painful, i’ve had a hard time dealing with my reaction to it. hard to sort through and manage the bitterness i’ve felt. so when i read about her learning the word autism…slowly learning to identify what that means…i just feel so glad that she has you and luau and katie there helping her, letting her know that she is loved and valuable and supported. she’ll never have to grasp around in the dark, trying to identify unnamed difficulties…you guys are there with her, every step of the way, it’s a great thing.

  14. A very good start. I have tried to make autism part of our vocabulary. My daughter and the school psychologist don’t think it is a good idea to speak of my granddaughter, age six, of having autism; telling her she has it. She hasn’t asked so I have to defer to her mom.

  15. How is it possible to love your family any more than I do? ESPECIALLY Katie? The tenderness and respect she has for her sister’s feelings and the way she can reach her? Breathtakingly moving. xo

  16. Those moments can be so jarring because you’re never prepared for them, but sounds like you guys couldn’t have handled it any better! Good job. 🙂

  17. Some day i hope my youngest daughter can say that to her older sister when the Autism talk comes up. Just the other day she told me she was “different”. Ay first it caught me off guard so i asked why she is different. her response was “Because God made me different.” I smailed and explained to her that we are all different, and thats what makes us all special.

  18. I am new to your blog and also new to the world of ASD. My 4 year old son has recently be diagnosed and I am still struggling with it. Thank you for sharing your family with ours . . . it gives me some hope.

    • Heather, welcome! If you haven’t seen it yet, I hope you’ll take a couple of minutes to click on “welcome to the club” over on the side bar. It says it all. In the meantime, I’m glad you made your way here. If you’re on Facebook, come and find Diary of a Mom. There are over 5,000 people there – all folks with autism and those who love them. Hope you’ll join us! – Jess

  19. Not that you need exposure or accolades or a chain-type mail award to pass along, but there’s something to this, and yours is one of the few blogs I follow, and Thank You.

    My son Jonah was diagnosed with autism last year, and while that label doesn’t make him anyone different than he’s always been, it carries with it an entire world we’re slowly slowly learning to navigate. I’m grateful for your presence in it.

    most sincerely, Jennifer Jantz Estes

    Versatile Blogger Award: http://versatilebloggeraward.wordpress.com/

    http://jenniferjantzestes.wordpress.com/2012/03/01/the-vba/

  20. Such a bond between those two! Jacobs sister who is 15 is amazing with calming him. But lately ive seen her struggle with him. She is having a tough time right now she didn’t make the school play and I know she is devistated. Ive tried talking to her but she shuts down. The other day the were fighting over the tv..I was sick and my foot is fractured and Jacob had been extremely fired up because his birthday is soon, Halloween and a visit from his cousins for thanksgiving. I kinda lost it and said oh will ya just let him watch his show so the screaming will stop..and she said it..why does jacob always have to get his way!? And stormed upstairs. My heart just shattered how selfish of ME! Just cause I didn’t want to deal with it anymore she suffered. I find it so hard to juggle my time between the 2 lately..they both need me in their own ways. Just feeling like a horrible mom lately.

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