Lip Service

by Jubbified, http://jubbified.deviantart.com/,
http://creativecommons.org/licenses/by-nc-nd/3.0/
No changes made to image.

Something I forgot when I posted the snow day story and videos was a thing that happened to/was said by Lily.  I had hit the post button and the story had probably been up a couple hours before it occurred to me and I mentally slapped my forehead with the palm of my figurative hand and said in my mind, "ding dang it all...I forgot to mention that!"

The thing that I forgot to mention was this:  Lily, upon her second to last sled run got to the bottom of the hill and said, "I bit my lip."

RIGHT??  RIGHT???

Oh, you don't understand.  (or maybe you do, but I'll explain anyway, or it's my shortest post ever and I do love to drag things out)

We never really know how aware of her own body Lily is.

Cuts/scrapes...they really don't get a lot of play with her.  Does she feel full when she's eaten enough?  We try to teach her, "My belly is full" so we don't keep trying to get her to eat when she's full, but even when she's said that, it's only sometimes true.  She may be sick of a particular flavor, for example, but will happily continue eating some other food.  Does she recognize when she is in pain?  Can she figure out where it's coming from?  We prompt her..."Does your ear hurt, Lily?" and she says, "My ear hurts."  Does it?  Or did she just echo our own words back to us?  She has told us in the past, and we were ironically so excited that she was able to communicate her pain to us. 

What do we know and what don't we know?  We know, for example, that when placed upon the toilet at some "reasonable" frequency, she understands how to use it and does so successfully.  We don't necessarily know whether or not she understands the feeling of "having to go" that might prompt her to independently tell us, "I have to go to the bathroom."  She has been initiating this more frequently, which makes me feel like that feeling of awareness is dawning, but there have also been misfires where she has been placed on the toilet, gotten off seemingly not having to go, then having an accident minutes later.

Lily is hyposensitive and her pain tolerance is pretty high.  She rarely cries.  What does she feel?  One of the things that we looked forward to with her big sister, Emma, was the day when she would be able to tell us why she was upset, not just cry about it and leave it to us to eliminate...hungry/wet/sleepy/sick... And to some extent we're still waiting for that day with Lily, although we've learned to interpret her nonverbal communications much better than we were ever forced to with Emma.  "I have an ear ache" still would beat the hell out of not eating, sleeping like shit, and screaming "NO" to everything at the top of her lungs in response to any question.

So at the end of her ride down the hill with Emma, she said, "I bit my lip," and I was pleasantly surprised.  I immediately bent down to ask if she was alright.  Sure enough in the middle of her lower lip a tiny trickle of blood was visible.

"Are you okay?" Emma echoed.
"I'm all better now," she said, and took one more trip down the hill with her big sister.

Minor pain.  Awareness of where it was on her body.  Understanding that she was okay.  All that stuff seems mind bogglingly complex to me when I break it down and try to "think through" what the brain has to do in order to process it all, and yet it all seems so ridiculously trivial when I think that it's typically something just taken for granted.

No, This isn't the One. . .

. . . where I talk about the big story that is overshadowing all the little stories and creating busy-ness in my schedule.


THIS is the one where I talk about how Lily has decided to latch onto the Wimpics (sic) and how in particular she has latched onto "cycling".  


Cycling comes on over the main feed on NBC, and I swear I have no idea why, but it does.  So while they cover cycling, they also slide over and cover Sport A and Event B, because the cycling race coverage lasts for. . . SIX HOURS!!!

This means that there's a sport that will occupy Lily's attention, a WIMPIC sport at that, that will occupy her attention for LONG periods of time.  While it's going on, she'll mutter color commentary under her breath.


"Oh, she pedaling her bike."
"She got stuck.  Fall off her bike and get hurt.  It's dangerous."
"Red bike!"


And so on.


Unfortunately the lamp in my TV blew up a few days ago, so we can't capture her attention that way, but the iPad saved our collective asses with the NBC Olympic app that literally has all the video of every sport available for streaming.  That means I can stream 6 hours of cycling to my daughter's delight!  


NBC has kind of sucked during the Olympics, but this app (though it as its issues) has been a godsend for Lily.  "I want watch Wimpics."  Done!


And we (my wife and I) have our individual pet peeves about what Lily watches, but right now it's either that or "No No" (Which is Lily-speak for High School Musical), "No-No Summer" (High School Musical 2) or "No No 3" . . . and however much you may love Zac Efron. . . I'm so. sick. of those shows.  I'd rather watch Barney, Wiggles, or Mother Goose Rhymes at this point.  


So while my wife is all, "Cycling?  Really??"  
I'm all, "CYCLING!!  REALLY!!"


---------------


Yesterday I took Lily home from OT and she was thirsty.  We had gone to McDonald's (therapy day is McDonald's Day in Lilyland) and she SHOULD have had some of her drink left, but I'd tossed it.  Instead she asked for what her mother drinks.  From the back seat:


"I want Diet Coke."


"Sorry baby, Diet Coke's all gone," I replied laughing (I'd never heard her ask for Diet Coke.  I don't think I even realized she'd heard it referenced.  She asks for my Pepsi when I'm drinking it at the table and I'll give her little sips, but that's about it).


"Oh no.  Diet Coke is all gone.  Can you email me Diet Coke?"


"What?"


"Can you email me Diet Coke?"


I couldn't help it, I laughed.  I love how she absorbs new words, and I'm not sure where she picked up the context for this, but I think it's pretty cool usage. . . email defined as "send", or perhaps "give".  She's not far off.

Celebrating Misery - With Leslie's Comments

Leslie has reviewed and added her two cents.  I'll add her comments/our discussion in bold, red italics.  It's worth seeing just how little I retain two days after the event, and also how I damage control when I'm being a lazy parent by glossing over it in the post. . . 


I was sitting with Lily in her bedroom.  Leslie had taken Emma to dance class, leaving us to our own devices.  Lily was doing this thing. . .I don't exactly know what she was up to, but she was holding her stuffed puppy in her left hand.  She would walk over to the door and open it with her right hand, then push the other hand (the one holding Poopers (the puppy) through the door, closing it (softly) on her hand.  Effectively, Poopers was outside the room, dangling from the hand that was closed in the door.  Then she'd open the door up, bring Poopers inside and close the door.  Repeat x 100.  Occasionally she'd change things up by tossing Poopers outside the door, closing the door on him, remarking that "Poopers is outside", then opening it back up, retrieving him, and returning to the room, closing the door behind her.


She started getting stir crazy and whiny.  She didn't want to stay in the room, but when prompted to leave she'd scream, "Noooooo!" at the top of her lungs into my face, which I'm not in love with.  Usually when this happens I just pick her up or hold her hand and take her to some new fresh venue and she's fine with it despite screamed protests to the contrary, but when I tried to hold her hand she resisted, flopping slackly to the floor in limp protest.


"Fine," I said, and sat back down on her bed.  Sitting on the bed is no particular hardship for me.


She got back up off the floor, fidgeting with her ear, before resuming her repetitive puppy ingress/egress routine.  I looked curiously at her.  She'd been fighting a runny nose for two weeks, but mostly she seemed healthy.  I had mentioned to Leslie a day or two prior that I wondered whether she might have an ear infection.


She held one hand over her eye.  I'd never seen that before.  "What are you doing, Lil?"  She didn't reply.  


She continued to play, but the hand drifted back over to cover her eye again.  I wondered if it might be the light in the room.  She'd never really shown any kind of overt problem with conventional lighting, but she'd been shutting off the lights in her room off and on for a few days.  She likes the switch.  


She shut off the light.  I said,"Awwwww," in a disappointed tone, and she giggled, turning the lights back on.


I said, "Yay!  The lights are back on!" 


She immediately turned them back off and I said "Awww" again to more giggles.  We play that game sometimes.  Really, we play any game that gets her giggling as much as we absolutely can.


She covered her eye again with her hand.


"Lily, does your head hurt?"  I never really expect a response to questions like this.  Or if I get one, it's "yeah" or "yes" followed in rapid succession by "no", and I'm left just as confused as I was before I asked.


"My head hurts," she said.  "My ear hurts," she continued.


I looked at her, surprised.  "Your ear hurts?"


"Yeah.  It scary.  It hurt a lot."  


"Awww, baby, I'm sorry!" I picked her up and held her, looking in her eyes.  Her hand covered her ear now.


"My ear hurts.  I broke it.  I'm sick.  I don't feel good at all."


Where.  The.  Hell.  Did she come up with all this language?  Did she pick it up from school?  Was there a kid at school who was sick?  Was this echolalia?  Or did she legitimately have an ear ache?


I remember when Emma was sick as a baby.  I remember being conflicted about not wanting her to grow up too fast (I consciously contradicted myself in my head any time I "wished" for her to develop some new skill that would make parenting easier. . . potty training, talking, walking, whatever, because I'd been told, and already could see that it goes by sooo fast) but wishing that she could tell me what was wrong.  Where does it hurt?  Is your tummy upset?  These were questions I wished she'd been able to answer so that I could make her feel better.


Lily, at six, has been sick many times, but has never put into language what she was feeling inside her own body.  Was that what she was doing?


I honestly wasn't convinced.  I even fought it a little, my innate protective skepticism keeping me from getting too excited about the possibility that she might really be communicating this feeling she was having.  She continued to tell me her ear hurt.  


Leslie came home about 15 minutes later.  Lily and I had migrated downstairs.  Lily was playing good naturedly as the TV played in the background.  We were switching off.  I was picking Emma up from softball practice, and she was on Lily duty.  I explained what Lily had said.  She didn't doubt.  


Leslie, upon reading this post, said, "You got a few things wrong in this one."  


"Pfft.  Like what?"


"Like, for example, when I came home, you didn't tell me what she said, she said it to me before you mentioned it."


That IS actually what happened.  I sorta forgot.


"I'm taking her to Med Express," she said.  I had been torn, but Leslie's decisiveness about the situation felt right.  I had been toying with the idea of going to the doctor, but I knew what a pain in the ass it was going to be, and hadn't been convinced it wouldn't have been a wild goose chase.  Med Express was the perfect solution I hadn't considered, and Leslie's opinion, that this was not echolalia immediately tipped the balance.  


"Um, also, when I got home, you were sitting on the floor with a blanket on top of you, and when i said we needed to take her to Med Express, you just sorta sat there and pulled the blanket up over your face and tried to hide from me."


"Oh yeah.  But I DID intend to tell you.  And I DID think taking her to Med Express was a good idea.  But I sorta didn't really want to have to do it.  You're right."


"Yeah. . . I have no doubt that you meant to tell me, I'm just saying, when I got home and she told me her ear hurt. . . you hid under the blanket."


She headed to Med Express and I went to pick up Emma.  We exchanged a few texts before Emma and I gathered her equipment and headed to the car.  I decided to meet them at Med Express.  They were still in the waiting room when we left, but got a room as I drove.  


We arrived and I texted Leslie that we were in the waiting room.  


A few minutes later I heard Lily's voice behind the doors, and Leslie joined us.


"She has an ear infection," she said, "The doctor said it is definitely hurting her, it's bulging.  The other ear is fine."


I was so excited!  My daughter had an ear infection! 


Leslie and I had run through the scenarios out loud before we parted ways.  She either didn't have an ear infection, in which case this was just a clever and novel new bit of echolalia memorized from school. . . or she did have an ear infection, and she felt it.  And it felt wrong.  And she told us about it.  


I think that unless you have special needs, are raising a child with special needs, or love someone who has special needs, it's difficult to really understand the "little" milestones and "trivial" victories that people with special needs and their parents and loved ones celebrate.


This "little" milestone seemed so huge to us over the weekend; this "trivial" victory so monumental.  I told her how proud I was of her for telling us what was wrong, and Leslie took her home and gave her Motrin.  I drove to the pharmacy to pick up a prescription for antibiotic.  Leslie took that time to call every living relative within a 500 mile radius, like we were announcing a wedding engagement or something. . . that's how big this felt to us; how big it still feels.   


And when I got home, Lily had taken her medication and when Leslie asked if her ear hurt, instead of saying "it broken," and "my ear is scary" she said, "it hurt a little bit".  And later still at bedtime when asked if her ear felt better, she said, "my ear feel better now".


The following morning she told me again that her ear hurt.  I gave her more Motrin, and although she still told me her ear hurt an hour later, after that she said it only hurt a little bit.  We continue to give her antibiotics, and since Sunday she's no longer tugging her ear or saying that anything hurts.


I know it probably seems a little weird how excited I am that my daughter has an ear infection. . . at least taken out of context, but this ear infection was the confirmation that my daughter felt sick, and was able to communicate it to us.  And that is cause for celebration.

Random Cuteness