at a loss

***

This post is dedicated to the memory of Tayley the frog. Sweet dreams, little guy.

***

Spacial orientation defines our natural ability to maintain our body orientation and/ or posture in relation to the surrounding environment (physical space) at rest and during motion. Genetically speaking, humans are designed to maintain spacial orientation on the ground.

The three-dimensional environment of flight is unfamiliar to the human body, creating sensory conflicts and illusions that make spacial orientation difficult, and sometimes impossible to achieve.

~ Federal Aviation Administration

Something wasn’t quite right with one of Brooke’s two frogs on Tuesday night. One was swimming around – or at least just kinda hanging around – in its typically froggy way, but the other one seemed to be spending most of its time lying listlessly under the rock in their little tank.

And so, it wasn’t a great surprise when I peeked in the tank the next night and found him floating on the surface of the water.

I held my breath for a moment, trying to gather my thoughts and decide how best to tell Brooke the news. There really wasn’t much to decide.

“Brooke, honey – I need to tell you something.”

She was in motion – moving, always, always moving, moving.

“Sweetheart, I need to tell you something,” I said again. She stopped for a moment and looked my way. “Honey, one of your frogs died.”

“It did?”

“Yes, baby. Do you want to come see him?”

“Oh yeah.”

We walked over to the tank and I pointed to the motionless frog.

Katie came up behind Brooke and asked, “Which one is that, Brooke?”

“That’s Tayley. Tayley died. He’s dead.”

“Yes, baby, he is.”

She went back to orbiting the room – moving, moving, ever moving. Luau and I asked if she’d prefer to honor him with a traditional flush or to bury him, as we had done with Katie’s fish, Spaulding just a couple of weeks before.

“We would flush him,” she said without hesitation.

I was worried. What if we flushed him and then, just a moment later she said, ‘Now we would bury him’? That’s the way things tend to work around these parts. I asked again. And again. She was sure. I wasn’t.

Luau scooped him out of the tank and brought him into the bathroom in a small cup. Brooke and I stood by as he gently poured him into the toilet.

Brooke began to laugh. Loudly. Very loudly. Somewhat manically. “He’s in the potty!” she yelled, catching her breath as she laughed hysterically.

Luau and I remained what I guess we thought was appropriately somber. He told Brooke he was going to flush the toilet and we said good-bye to Tayley as he made his way through the plumbing and into the great beyond.

Brooke ran back into her room, still laughing heartily. “Tayley went in the potty! Tayley died. He’s dead. He went in the potty! He got flushed in the potty!”

I suddenly panicked. She was laughing her little ass off. This was funny. Or something. I looked at her other frog. What if she decided to flush it, or, heaven forbid, Katie’s new fish? I got down on my knees in front of her.

“Brooke, we don’t ever flush animals that are alive, OK? Only Mama or Daddy can flush a fish or a frog OK?” I regretted our decision not to bury him.

She sensed something in my tone. She must have heard my anxiety. She balled her little fingers into fists, rounded out her arms and flexed like a tiny, not green Incredible Hulk and began to shake.

“Honey, you didn’t do anything wrong, OK? I just want you to know that ONLY Mama and Daddy can flush anyone. Who can flush anyone, Brooke?”

“Mama or Daddy.”

We went through this bizarre conversation a couple more times. It’s the only way to ensure understanding.

As soon as I stopped talking, she bolted away and spun herself around. Suddenly she found herself back where she started – we were face to face. She shook again, her little arms tensed all the way down to those tiny, angry fists. Then she took a step back from me and folded her arms in a pose that would have been a great imitation of Barbara Eden in I Dream of Jeannie had it not been so frighteningly intense.

She came toward me and butted me lightly with her forearms, still held out in front of and away from her little body. “Fight! Fight! Fight!” she yelled. I was taken aback. I had absolutely no idea how to react. “We’re fighting!” she continued as she came toward me again. “Fight! Fight! Fight!”

It couldn’t have been more obvious that she wasn’t trying to hurt me. She was stopping just shy of me or at most, touching me lightly. But her stance was painfully, frighteningly aggressive. Her entire body was ready for action. Even her jaw was set and tight. She was expressing SOMETHING.

“Fighting is MEAN.” she said loudly. “Do we fight?”

I snapped out of my daze long enough to answer her, “No, baby, we don’t fight.We love each other.”

I was lost. I had no idea where I was in the room. I’d lost my compass. I was watching this little person who I love more than life trying to tell me something, but for the life of me I didn’t know what. Worse, I didn’t recognize her. I don’t know how else to explain it. I searched her eyes, then her entire face for my baby – for the little girl who I know – who I try so hard to really, truly know. I didn’t see her. And she certainly didn’t appear to see me. She looked at me so intently, but she – my Brooke – wasn’t there.

She ran out of the room and, at Luau’s prompting, ultimately made her way into the shower with her sister. I fought to steady myself. The room was tilted like a fun house ride. I’ve always hated those rides.

Luau walked in and I tried to explain what had happened. I couldn’t. After trying to relate the story I said, “I feel like I’ve lost my spatial orientation.” He tilted his head like a sweet and terribly confused Golden Retriever and added “Huh?”

The rest of the evening unfolded just like any other. There was not so much as a trace of earlier events. Brooke was playful and happy.

At bedtime, I curled myself around her back as I always do. We cuddled and I pulled her as close to me as I could.

“Brooke,” I began tentatively, “when Tayley died, how did it make you feel?”

“He died. Tayley is dead. We flushed him.”

“Yes, honey, but when he died, how did you FEEL?”

I was on unfamiliar ground. I was desperate to give her a forum to talk about her feelings. But she doesn’t have the language to express more than two of them – or three if you count the occasional ‘frustrated’. I have no idea how much she understands what ‘feelings’ even are. But she had FELT something. I know better than to make the erroneous assumption that because we can’t see her emotions, she’s not feeling them, and this time their was no way in hell that she hadn’t felt something pretty damn intense.. So what then? What had it been?  How do I give her the tools to talk about how she feels without making assumptions about how I think she feels? Just because losing a pet would make ME sad, can I assume it should or does make her sad too? Gaaaaah!

“Because he died,” she said.

“Yes, honey, HOW did you feel because he died?”

I gently asked three more times. I was determined not to lead her into an answer. If I put words into her mouth they’d be meaningless. The third time she answered differently.

“I feeled sad.”

Progress. HUGE progress.

“You know, Brooke,” I said to her back, “when I feel sad I like to have a hug. What do you like to do when you feel sad?”

“I like to say about rainbows and then I am happy.” She began to sing. “Happy Happy Happy! Happy Happy Happy” to the tune of “Conga! Conga! Conga!”

So um yeah. There we were, in the dark, after losing her first pet, singing a happy Conga. She stopped singing. “Tayley is dead. Like Spaulding. But we CAN’T talk about it.”

The wheels started spinning in my head – why would she think we can’t talk about it? The pieces came together pretty quickly.

When Spaulding died, Brooke talked about it incessantly. Each and every time that she walked by his empty tank she would say, for all the world to hear, “Spaulding’s not here anymore. Spaulding is gone. He died.”

As you might imagine, this practice was hell on her sister. Once Katie’s new fish, Splooshy took up residence in Spaulding’s old tank, Brooke would say, “There’s Splooshy. No more Spaulding. Spaulding’s all gone.” Katie did not need to be CONSTANTLY reminded that Spaulding was gone. We explained to Brooke that we couldn’t talk about him all the time because it made her sister sad. It was perfectly logical that she would think this situation was exactly the same.

I scrambled to explain that we could talk about Tayley all she wanted, anytime.

I finally kissed her good night, counted down and headed out of her room. I went down to the office for a while. I was waiting. Waiting for the storm – the meltdown – the bottled hurricaine of emotion that I thought was sure to come. I remembered this night and tried to ready myself for what I thought was ahead.

I finally went to bed. Brooke slept through the night without so much as a peep.

I tossed and turned but finally fell into a restless, anxious sleep. How do we do this? How do we guide kids who don’t have the facility to verbally express emotion toward an outlet to process those emotions? How do we teach them to use words when we don’t know which words are appropriate? How do we assign meanings to feelings without knowing which feelings they are experiencing? How do we know which reactions are pretty well universal to life events like these and which are simply ours and don’t apply to a mind that works differently?

When Katie lost her fish she cried. A lot. She poured out her soul with each tear. She told me that she was sad. She told me that her heart hurt. I knew what to do. I knew how to soothe her pain. I knew there was pain.

With Brooke, I tried. I really, really tried. And still, I can’t answer a single one of those questions.

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27 thoughts on “at a loss

  1. sorry, publishing error.

    it’s tough to write a sentence that someone else says and make it SOUND like the other person. And yet, Brooke never sounds like anyone else. You do an amazing job of capturing her voice, her perspective on the world. Same with Brooke, Luau, anyone else you write about. It’s just an indication of how much you listen, take in everything you hear. It’s a gift you have and it says a lot about you.

  2. i’m going to keep going. i’m going to fill up your comment section today. this is comment #3 of 237. hee.

    if I expressed any differences growing up, no one reacted well (in other words, no one ever reacted the way you do with Brooke, wanting to know what’s going on inside). I learned to never talk about anything. so, when i started to work on this, going to therapy, that’s what it became about: communicate what’s inside. Practice, over and over. When the doctor changed offices…a seemingly small thing, she insisted: here’s a chance to practice verbalizing reactions. That went on for months. Things that would have seemed like nothing to other people, wall color and curtain style…she spent months, literally, pointing and asking how I was reacting to things.

    So, I don’t know how to answer any of the questions you raised…but I do know that no one asked me about internal reactions until I was the age of 30, and it’s been extremely difficult…to this day it’s like pulling teeth. And the point is that, as painful as it is, you’re starting now with Brooke…she’s not going to be alone, completely lost inside of herself throughout her life. She may not react well to the questions, she may not know how to get those words out, but you’re trying and that in itself and huge, Jess. I know that’s small comfort…it’s got to be killing you, not knowing how she’s reacting, but there’s no way to know what’s “right” at this point, what words you’re supposed to use with her. Just the fact that you want to know…I wish you could know how meaningful that is, how powerful.

  3. M, I hope you don’t mind but I’m going to sneak a comment between yours (before you get to #237). First, I agree with you, M.

    Jess, you’ve got to keep trying (as, of course, I know you will). I watched you with both Katie and Brooke since they were born. They “get” your love. They “get” what you teach. Yes, on different levels but each has learned from you and Luau. Brooke has learned so much and she expresses herself better and better as time goes by.

    You will endure by enduring, Jess. Brooke is an amazing little girl because she’s Brooke and because she’s got an amazing family and support system. She’ll “get” it!

    Love you all,
    Mom

  4. You do an amazing job of discerning Brooke’s needs and helping her to express what she feels even if she doesn’t know completely. As you said “I feeled sad” is incredible, wonderful progress! She was able to do that only because of you. You are an amazing mother – I am always learning from you.
    M, your comments really touched me.

  5. I don’t know how to interpret that exchange. It seems like your statement, “Brooke, we don’t ever flush animals that are alive, OK? Only Mama or Daddy can flush a fish or a frog OK?” had some unknown power, but I do not know what.

  6. i love that you listen, and see, really see, that you stay present, stay with your own thoughts and feelings, tease out what’s yours from what’s not yours, that’s all so incredibly important. it’s the stuff of what we’re doing here, if you ask me. i know brooke feels that. i know she does. fluffy has so many words but we do the very same sort of dance here. so often, what he feels stays hidden behind his constant motion and constant ‘sounding’, vocalizing, behind his laughter or a smile that other people call ‘inappropriate’. for a long time, i knew that when he said he was sad, even though it sounded flat, inside it was an avalanche.

  7. one thing i always appreciate about your posts: it’s amazingly difficult to write conversation that sounds like other person, if that makes any sense. it’s tough to write a sentence that someone else says and make it SOUND

  8. Times like this, I wish I’d mastered the Vulcan mind meld back in high school (and believe me, I spend many lonely Saturday nights trying – Live long and Prosper).

  9. I’ve been part of a few moments like this as well. I know what mean about not knowing how to comfort, wishing I knew what she was feeling. I try not to assume that Charlotte’s reaction is the same as mine and give her the space to communicate her own reactions – easier said than done.

  10. “How do we do this? How do we guide kids who don’t have the facility to verbally express emotion toward an outlet to process those emotions? How do we teach them to use words when we don’t know which words are appropriate? How do we assign meanings to feelings without knowing which feelings they are experiencing? How do we know which reactions are pretty well universal to life events like these and which are simply ours and don’t apply to a mind that works differently?”

    Just the way you are doing this. And as Doris Day once sang, “And always let your conscience be your guide.”

  11. You remind me of the parents I met in Nepal. They are so very dedicated to doing the best they possibly can for their children, even when they don’t understand what’s affecting them and how. They never stop trying. You, my friend, are like that.

  12. “ONLY Mama and Daddy can flush anyone.”

    How did we miss this?

    Immediately added to our Family Rules.

    On a more serious note, your stories are really helpful to me. Brooke is further along in her language development than Grayson and I feel like I get a better understanding of where she may be coming from in hearing Brooke’s words and pondering your interchanges with her.

    Thanks for that.

  13. I don’t know how we help our kids find the words and I have no answers to the questions you pose, but I do know Brooke couldn’t ask for a more dedicated mommy. I know that Sam will laugh maniacally when he’s not sure what he’s supposed to be feeling, but I only know that for sure because he is able to tell me so later (unlike John).

    Sorry about Tayley, but I did love the line “Only Mama and Daddy can flush anyone.” That’s just priceless.

  14. I am back checking your blogg. So powerfull. You are such a good Mom. I am the lady who sent you an e-mail regarding my niece’s little 3 yr old son. I think he may be Autistic. You were so kind and answered my e-mail. We are still trying to figure it all out???? Have you ever experienced your daughter taking off her clothes in public? Our little guy wants to strip off everything and go without clothes. Might work at home, but it is getting kind of embarassing when visiting other homes or going to a store. Any advice?
    Aunt Karen

  15. PS: I too loved your comment “only Mamma and Daddy can flush anyone” Keep your sense of humor–it will get you through a lot in life : -)

  16. aunt karen ~ the only real problem we had like that with brooke was when she was running off to the bathroom. no matter where she was, she would strip FIRST, THEN go running. we made what’s called a picture schedule (there’s a decent description here – http://www.bellaonline.com/articles/art45166.asp) and put copies of it in each bathroom at home. the first card on the schedule is a picture of undressing. we made it clear (over time and practice and lots of prompting) that she had to be IN the bathroom to follow the schedule. meaning, of course that she couldn’t take anything off until she was already there.

    many of our kids have sensory sensitivities. perhaps you might check for tags, seams or rough fabrics that may be annoying your little guy. if he’s getting any kind of therapy, don’t hesitate to ask the various providers (no matter what their area of specialty) for help. they will likely have some insight.

    and yes, sense of humor is VITAL!

    anyone reading please weigh in with ideas!

  17. It’s the laugh that gets me. I always know when I’ve hit on something terribly scary for JBear: the laugh. He doesn’t know what to do with the feeling and it’s overwhelming. She doesn’t know what to do with the grief. Then she doesn’t know what to do with the anger. But she does know you’re there and you’re listening. I’ve always hated those rides, too.

  18. Ow and wow. You are a hero, Jess. Yup. You can deny it all you want but you are a hero to your daughters, husband and readers every single day. Once again I say bless you, dear one.

  19. Hi Jess! I’m sure you don’t remember me, but I am the EB from this post (http://adiaryofamom.wordpress.com/2013/04/04/too-much-2/) and I’ve been a lurker for years. I’m working on my dissertation right now (yes, during the Super Bowl)… It involves creating a toolbox of grief-related resources for families of kids on the spectrum. Much of the work I’m doing will eventually end up on a website I’m building, because if it gets published in an academic journal instead almost no one who needs it will actually be able to find it, which (to my mind) is pretty pointless. I’d potentially like to include a page on my website with stories by autistic adults and parents of autistic children about how they experience grief, and I remembered this story in the back of my mind. I would LOVE LOVE LOVE to talk to you about what I’m doing, and even to possibly link to this blog post if it’s okay with you and Brooke. Your writing has been a major influence in how I’ve come to understand autism, and I would love to pick your brain for a few minutes on what you think would be most helpful as a parent when facing this type of situation. The resources currently out there for grieving kids with ASD are pretty atrocious, and I’d like to offer something better. I’m sure you’re very busy, but if this is at all interesting to you, please shoot me an email!

    All the best. Go whichever-team-you-are-cheering-for :)

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