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Monday, February 6, 2012

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

48 comments:

  1. I so totally get you on this!!! This past week I was calling everyone and their brother telling them, "Alex hit the bucket!!! He hit the bucket!!!' After 8 years of puking he FINALLY made it to a bucket instead of puking all down himself and looking up at me in shocked horror.

    So yeah, I get you on this. Way to go Lilly!

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    1. hahaha. . . awesome! Good job, Alex!!

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  2. That is a huge deal! Well done Lily. The parenting guessing game is so hard . . . are they sick or not . . . should be go to the doctor or not . . . when they are able to help us figure out what is wrong is a huge deal.
    Jenn

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    1. We're all in agreement then. Hurray for ear infections!

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  3. I totally get it and I would never believe myself saying this but obviously ear infections have their good side... I love it when my kid surprises me like that :)

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  4. I completely understand. That is really good news. Not the infection of course..I'm happy for you all.

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  5. Hooray!!! That is awesome news. I hope that it is the beginning of lots more communications from your daughter!

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  6. It kind of feels like you've won the lottery, doesn't it?! I liken this experience to when Tate, who pukes a lot, said his tummy felt "squicky", and we asked if he thought he was going to "spit". He said yes, and we made it to the bathroom where he proceeded to "spit" in the toilet. I texted my sister and posted about it on facebook. Oh.yes.I.soooo.did!

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    1. I really did feel a bit euphoric.

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  7. This made me cheer in the parking lot on my lunch break. Audibly. No joke. YAY LILY! This is a huge thing!

    Glad to hear she's feeling better!

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    1. I'm sad that you have to eat in the parking lot. I used to eat my lunch across the street from my office because there was a park. I'd open my book and read while I ate lunch.

      And then a bird shit on me, and I stopped reading in the park on my lunch break.

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  8. I totally get this!!! As parents we all go through this stage, though you've had to wait longer for it than most, and not with a guarantee that it would come, so it's a bigger deal for you guys for sure. I'm so so so glad that Lily communicated so well. What a fantastic silver lining to the black cloud of that infection!!!

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  9. That is fantastic, and to make all the more fantastic I'll tell you that my NT nephew, who is six too, had an ear infection but he told everyone that he had a tummy ache for two weeks. Eventually he had an ear appointment because he has glue ear and the doctor told my Siter-in-law off because Arthur had a whopping ear infection. She was completely perplexed until he said, "I told you I had a tummy ache. It's in my ear!" So Lily has better language skills than arthur, for sure!

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    1. I LOVE the 'tummy ache in my ear' thing!

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  10. Oh my gosh! I think Lily and Little Miss must have been linked or something last week because Thursday night almost the exact same thing happened for us! I can't even begin to tell you how excited the hubs and I were to discover that LM did, in fact, have an ear infection and that she actually was able to tell us!

    We totally need to write to Hallmark and get them to come up with a card or something. "congratulations - your kid told you about her earache" ?? I'll send you one if you send one to us :-)

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    1. they are ridiculously in sync with each other, aren't they.

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  11. OOOMMMGG!! I was gasping in excitement as i read this!!! HOW FREAKING AWESOME!!! not the infection part.. but the communication! HoLy COW! Freaking fantastic. We get those odd normal moments with Tommy where it manages to find all the words and tells us something important. SO EXCITED FOR YOU!! Hope baby girl is feeling better soon :)

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    1. i THINK she feels better now. She certainly hasn't mentioned her ear any more. . . unless we bring it up. :)

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  12. While her ear infection is temporary, may her success be permanent!

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  13. Jim, I so totally get this. CONGRATULATIONS on an ear infection! And, most importantly, on MEANINGFUL COMMUNICATION and BODILY AWARENESS all rolled up into one incident. Ain't development & maturing wonderful? I remember the first time I asked Jake "What happened?" about yet another mystery bruise and got a real, credible answer, I nearly fell out of my chair.

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    1. Yeah, it took us by surprise for sure.

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  14. Completely awesome, although I hope it clears up quickly! :)

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  15. Awwwwwwwwww! This is great AND you were able to get her all fixed up and pain free!

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  16. That's pretty awesome, Jim and fambly. We'd love to have that experience. Ben's almost 5 and has never really pointed to a thing and said, "this hurts" (ok, actually, sometimes he bites his arm and then points to it and says "ow", but it's not at all mysterious). When he does, I hope we'll be as on top of it as you and Leslie (ok, mostly Leslie) and reward that behavior by removing the pain. Ok, my fact checker has just told me that I should say, "Leslie" or "just Leslie", rather than "mostly Leslie" above. Regardless, awesome. Go, Lil.

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    1. Lily turned six a month or so ago, and this is brand new. . . she's been using longer and longer phrases lately. Still not super consistent, but more frequent appropriate language. . .

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  17. Oh my gosh!! I'm so happy for you! This is truly a BIG deal. I love Leslie's take charge, no doubt attitude about the whole thing too. Can she come over and get me into shape? Cuz, I'm thinking I might've handled it the same way as you...

    SO happy that Lily feels so much better now. T still is not proficient at letting me know when and what hurts. He's pretty stoic. He does the same game with the lights and will say "yes" and "no" in rapid succession like that so I don't know what's up - a lot of the time. We all need a Leslie. You and Lily are lucky. :)

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    1. Leslie read my account and corrected a couple things which make me look like a lazy dad. I'll be modifying the story to reflect her edits today. . .

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    2. You see? I knew we all needed a Leslie in our lives... ;)

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  18. Great news! How much easier life would be if my Lily could just tell me something like this!! The only way I EVER detect an ear infection? When she doesn't sleep a few nights in a row. That's my only clue in life. Words will be AMAZING. And I so hope this is simply the start of great things for your Lily!

    And while Leslie may have had to talk you down from the blanket, you did come around and show up at Med Express. So that counts....

    Now, on a totally unrelated note... the swing in that way too cute picture up there? Where did that thing come from? Where can I get one?? Go ask Leslie..... I'm sure she knows... Then come tell me. My Lily needs that thing.

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    1. ahem. . . I know too! We actually got it online, and applied for a grant through our case worker. They paid half, we paid half. It was $150, I think.

      http://www.amazon.com/CHILLY-SWING-RELAXING-OCCUPATIONAL-THERAPY/dp/B001V6POUS/ref=sr_1_3?ie=UTF8&qid=1328631653&sr=8-3

      Hmph!

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    2. Thank you, sir. I'm so sorry if I insulted you by suggesting you ask Leslie. I just kind of got the idea that she might be the one who's really in charge around your house. Where did I get that idea? Oh, now I remember! YOUR POST!

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    3. Pfft. . . THAT's what you got out of this post? what about MY side of the story??

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  19. Great post. I remember the first time Elijah lied to us. It was an obvious lie (about not having done something he did do, I can't remember what) We felt a lot the same way, somewhat distrusting of this possible milestone. Maybe he didn't do it? Maybe the other kids are lying? E doesn't know how to lie, he has no idea he can manipulate a situation to his advantage. In the end after a short amount of time he admitted it. It was one of those weird moments where you celebrate your kids deception, (or in your case illness) because, well... because of it they we're able to display some sort of cognitive function they had been previously incapable of. Looking forward to reading more of your blog.

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    1. Thank you. . . yeah, just like that. YAY! My kid lied to me!! Yay! My kid is ill and told me!

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  20. I'm so happy she had an ear infection, but am also equally happy that she feels better!

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  21. You're poor wife. lol

    I LOVE that she's calling you out on this lol YAY WIFE!

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  22. Ha, I love that your wife actually reads your blog. I am not sure my husband even knows the name, new or old, of my blog. Good thing he can't hop on and contradict me! Just remember this:always give your kid credit! They can and will amaze/surprise you. So next time, don't laze about so much and get your kid to the dr!!! (My husband covered with a blanket is often how I find him when I return home. It must be in the DNA).

    We did have a similar experience once. I think K was 3 or 4 and I was gone for the day. I got home to a screaming kid, pulling at her ear. My husband had no clue, never called me once all day, so by the time I returned home she was in a ton of pain. And then *I* had to take her to the ped, screaming. And sit in the pharmacy getting meds, with her screaming. Dads can hit up the ped, too...just so you know ; )

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    1. She reads, but doesn't comment. I have to drag comments out of her unless she disagrees with me.

      I KNOW I can take her to the doc. . . I offer, I swear!!!

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  23. This. Is. Awesome!
    My son did this us too just last weekend. Turned out to be scripting, but who knew? Well, I guess I should have known after we were in the doctor's office and he said yes, his ear hurt. And his mouth. And his eyes. And his pajamas. But in our defense he had a fever so you just never know.
    Hurray for these awesome milestones!

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