or water


Katie (5) and Brooke (3), 2007


It is 2007. Luau and I are sitting at the kitchen table, interviewing a home service provider. Or perhaps she’s interviewing us. I don’t know which end is up. I just know that we need help.

Brooke is three years old. She lives in a state of frustration. All we want is to help her. But we don’t know how.

We’re trying to come up with examples for the therapist – specific times that communication fails.

“Okay, here’s one,” I say. “I’ll ask her what she wants to drink. And she’ll tell me. And then I’ll bring her what she asked for. And then she’ll burst into tears or yelp or shove it back at me. I don’t know why and I don’t know what to do.”

I don’t realize that I’m crying until Luau hands me a tissue. I take it, but crumble it in my hand.

Katie has wandered over to see what’s going on. She’s been standing at my side for the last couple of minutes, watching, listening.

“Mama?” she asks, “may I say something?”

Three sets of adult eyes turn to her. “Of course, baby,” I say. “What’s up?”

“Well, when you ask her what she wants to drink you give her choices. And if you ask her if she wants milk or water, she just says, “Or water,” because it’s the last thing that you said and she repeats it. But she might really want orange juice. She just can’t tell you cause she can only say, “Or water.” So she’s probably getting mad cause she wants something else that you didn’t ask her.”

My mouth is hanging open. It will be weeks before we will hear the word echolalia for the first time. But our five-year old … she’s miles ahead of us. I’m not getting it because I’m trying to understand what’s happening from my perspective. Katie is getting it because she’s looking at it from Brooke’s.

The therapist looks from Katie to me, then back again. I try to collect myself from the table, the chairs, the floor, the walls. I try to gather in the guilt that coats every surface, to contain the fear and the helplessness that threaten to set the whole toxic mess aflame.

From this moment forward I will know that the most powerful tool I have to help my daughter is my best attempt to see things from her perspective.

“Katie, THANK YOU,” I say, grasping onto her words as though they are a life ring tossed into the middle of a dark and tumultuous ocean. “Thank you so much for telling us that, kiddo. That’s really, really helpful.”

She shrugs and wanders off.

Someone recently asked me when we decided to tell Katie about her sister’s Autism. I said what I always do — that other than explaining to both of the girls that Brooke’s particular kind of neurology had a name, we never really had to tell either of them much of anything.

They always gets it – always got it .. and usually show us how to do it better.

Ed note: When I asked Brooke for her permission to share this story, she said, “Sure, but I have a joke.” So I thought it only fitting that I include Brooke’s joke. Ready?

What’s a tree’s favorite drink?

Root beer!

You’re welcome. 

15 thoughts on “or water

  1. “I’ll ask her what she wants to drink. And she’ll tell me. And then I’ll bring her what she asked for. And then she’ll burst into tears or yelp or shove it back at me. I don’t know why and I don’t know what to do.”

    Exact same experience here when my ds was that age. Realized about a YEAR later — I was bringing him the correct drink, but if the CUP had a picture on it (ya know, the cutesy Disney characters that kids are “supposed” to love on every frigging household item), it bothered him so much he couldn’t drink it. But he couldn’t tell me that. So he would shriek and throw it across the room.

    Ugh. Who knew a parental learning curve could be so steep — but so meaningful.

    Parenting from his perspective made me a better mom to his younger (NT) siblings.


  2. Tell Brooke the joke was awesome! Made my morning. As for Katie: She’s basically too smart. Please ask her to start reading less and watching more junky TV. She’s making the rest of us look bad.

  3. I loved the joke. 🙂 I have always found that my oldest has been able to give me some insight into his brother’s perspective, too. I am very grateful for that.

  4. Wow! What a smart girl Katie has always been and so insightful! My oldest (Asperger’s) is quite helpful with his brother (Autism) in the same respect and I am so grateful for that! The joke was perfect, just what I needed to put a little pep in my step this morning! Thank you Brooke!

  5. She is a thirty year old in a twelve year old body, and she reminds me of her mama when she was the same age and younger….. You are in for a wild ride. Hold on and enjoy it, but hold on…
    Love you,

  6. Thanks for the joke 🙂 it helped me get through a rough spot this morning. My son and I are still here at Seattle Children’s Hospital after 4 months. Some days are harder than others but my son will be telling that joke all day and that is all that matters, to see him smile and laugh.

  7. Ok, Jess. I’m starting to believe you make all your stories up 😉 no but really what insight from a 5 year old. And how did your girls make it to preteen years without you eating them up because they are about the cutest little things I have ever seen! That picture!

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