Experience and Adaptation

Okay, experience teaches that there's a "right" way and a "wrong" way to mount a toilet paper roll on the spool.  The right way is, of course, configured such that the paper lies over the top, not behind the roll.  It just is.  I've seen the pros and cons in ridiculous detail, but over the top is "correct."  70% of those polled (on some apocryphal internet site I read) agree and if I've learned nothing else in my 42 years, it is that if 70% of the people polled think it's so. . . who am I to argue with those geniuses?


It bothers me that my wife seems to hang the toilet paper indiscriminately, like it somehow doesn't matter; like it's somehow not the huge deal that it so totally is.  When I do happen to spy the roll incorrectly mounted, I change it without comment, however, because when I do bitch about it, she says things like, "If you'd have bothered to put the new roll on yourself when you finished the old roll I wouldn't have had to put the new roll on incorrectly!" which just distracts from the point, (which is that she's doing it wrong) and redirects it to something irrelevant (that at least someone is doing it).


Despite knowing the "right" way to mount the rolls, Lily receives an 'adapted' roll.  It's not in her IEP or anything, but like other adaptations and therapies we've implemented for Lily, it allows us to give her some amount of privacy while she sits on the potty while simultaneously preventing this:

From turning into. . .

This:  

Because you can't do that if you roll it from underneath.  

Experience is the best teacher.

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

You Gotta Give Her Credit

Part 1:

I want to give a little credit to the primary school Lily attends, and a little more to Lily's special needs (SN) Kindergarten teacher, Mrs. Ingrams (name changed).  If you're unfamiliar with the appellation "primary" school, then you're not alone.  Until a couple years ago, the elementary schools in our area taught children from K - 4.  After 4th grade, the kids went to a middle school from 5 - 7, then an intermediate school from 8 - 9, and finally high school, 10 - 12.  I don't know why I'm drilling into these details (some of which I may actually have slightly wrong) but I just wanted to explain what I meant by "primary" school.  They changed that breakdown to something I personally like more, adding "primary schools" to the mix:

Primary School:  K - 3

Elementary School:  4 - 6

Middle School:  7 - 8

High School:  9 - 12

I like it better because it keeps the little kids with the little kids and the bigger kids with the bigger kids.  

Anyway. . . I want to give a little credit to the school, but more to the teacher.  

First of all, it is more or less acknowledged locally that if you have a child with special needs, specifically autism, this primary school, our primary school is the place to be.  How did we end up there?  Clever management?  String pulling?  No.  Blind luck.  What's the old saying?  "It's better to be lucky than good."  I've never understood that saying, but let's go with it because it applies here.

Since we started Lily in this primary school we've really had no problems.  The IEP process, while not flawless, essentially provided us with everything thought might be necessary for Lily, and the school in general seems to genuinely care about Lily and her learning.  And for the most part, when we ask about things that might be added to help Lily at school, they are provided, without our having to reconvene over a table, haggle, threaten or sign documents.

Lily's Kindergarten teacher is Mrs. Ingrams.  Lily calls her simply, "Ingrams."  I've mentioned Mrs. Ingrams before in a blog post about parent/teacher conferences >>Here<<, and mentioned in another blog how Lily once included her in her nightly prayers.  

In the midst of a series of bad days for us with Lily, and a mounting feeling of overwhelming stress and cumulative gloom (excessive potty accidents with Lily, lots of spitting, a couple sleepless nights, planning a birthday party, attending an orchestra recital, doctor's appointments, illnesses, and an ominous email from the daycare implying impending expulsion for Lily. . . overall just a lot of shit to deal with simultaneously), my wife mentioned Lily's daycare troubles to Mrs. Ingrams during a morning dropoff, and how freaked out it was making us, and how, "We were always worried that Lily's school was going to be the problem.  Everyone always seems to have issues dealing with their school and their IEP, and you guys have been the easiest to work with."

And Mrs. Ingrams said, "We love Lily.  As long as Lily is in our building, you won't need to worry about her," and that story, even told to me by my wife after the fact, even written down a week later, gets me right here *thumps chest* and makes me misty-eyed just to type out.  And I know Leslie feels the same.  We love us some Mrs. Ingrams.  

Part 2:

Leslie and I. . . that feels wrong.  Leslie (I did nothing) set up an after-the-fact birthday party for Lily.  We invited a few of the girls from her typically developing classroom and one boy from her SN classroom.  Lily is the only girl in her SN classroom, but this particular little boy is also in her typically developing classroom with her, and is the same age as Lily, and it hurt our hearts not to extend the invitation to him.  We chose "Jump Zone" because it had a proven track record of giving Lily joy, and really, what kid doesn't like to bounce?

I'd provide more details as to the party itself (though that's not why I bring it up) but I. . . didn't go.  Yeah, I know. . . to my own kid's birthday party.  I was sooooo sick that day.  While Leslie handled Lily, Lily's friends, Emma, Emma's friends, our family, and the families of the guests. . . I was in bed with my head under a pillow praying to the God, Immodium.  Let us speak nor more of it, except to say that Leslie deserved a lot of credit for handling that (the party, not my issues) "on her own" (our parents helped, of course, as did our friends, but it's not really the same thing as having your spouse there to help do something as little as pay the bill while the other watches Lily).

At this party, all guests were informed that they were not to bring presents.  A couple of the parents I talked to directly, explaining that Lily had already gotten her birthday presents in December, and that this was just to give her a chance to have a party.  This was universally ignored and Lily came home with a bunch of presents.

Recently Lily started playing with some of her presents.  This is, in and of itself, reason to celebrate, since she's not much of a "playa" (the "yo" is implied).  Whether she's shaking music makers or examining dolls, she's probably taken more to presents over this birthday/holiday season then she ever has previously.  

This is new.  This is positive.

This will all come together, I swear. . . 

Part 3:

Kids actually do say the darnedest things, and Lily's speech has always been one area that both Leslie and I never seem to be able to capture and appropriately share after the fact.  She'll say some adorable thing, and I'll think, "I have to remember to tell Leslie that when she gets home." And when Leslie gets home I'll say, "Oh!  Lily said the cutest thing and it was totally appropriate.  She said. . . um. . . she said. . . " and I'll trail off in silence, the anecdote lost to my dotage.  She does the same thing.  

But the other day Leslie came to me and said, "Lily said the cutest thing!"  And shared. . .  

The resemblance *is* uncanny

Lily was in the bath, playing with one of her presents from the holiday/birthday extravaganza above-referenced.  It was a mermaid doll.  Lily does seem to latch onto mermaids for whatever reason, and this mermaid (given to her last month) had not yet gotten much of her attention.  

Leslie was in the room with her. 

"Mommy, what her name be," she asked?  

Lily's naming conventions are typically related to the description or identity of the toy in question.  In the case of a recognizable doll, (e.g. a Disney Princess (TM)) she will give the doll her appropriate name. . . Belle, Ariel, Cinderella, etc.  In the case of her dog, "Poopers" it's because she mangled "puppy" into "poopy" and then "pooper" and he sort of devolved himself into Poopers.  Having said that, she has never brought up the process of "naming" something.  It's just something that sort of happens over time.  Most of the time we reference it, and she accepts our label and adopts it.  This was something new; something positive.

"Mommy, what her name be," she asked?  And Leslie thought about it.  Lily is fascinated by colors, and will describe "red" balloon, or "purple" iCarly DVD, and she wondered whether a name that described all the pretty colors in the mermaid's hair (it changes when it's wet) would be something appropriate for the doll, but she temporized instead.

"What do you want to name her?"  She didn't expect an answer.

"Ingrams," she said.

"You want to name your mermaid, Ingrams," she asked, amused.

"Yeah."

"Alright baby, I think that's a good name."

"Yeah," she replied happily and played with her mermaid.