I'm Going to Count To Three

I mentioned this to someone (Karen V) today, and thought maybe it was something I should write down in blog form, if not for others to read, at least for me to read and help me remember.  


Lily doesn't answer sometimes when we address her or ask her to do things.  And I guess not even just "not answer", but sometimes she doesn't appear to pay any notice whatsoever to her surroundings to look up, or comply, or respond in a timely fashion.  (Put quotes around that last little bit.  It's important for later)


Sometimes she's focused on something.  Perhaps it's the TV, or a book, or looking at a doll, but sometimes she doesn't appear to be doing anything at all.  As parents, or a parent (I'll speak for myself), I will find myself getting frustrated when my repeated attempts to get Lily's attention appear to be in vain.  And I have to remember something our last wrap psychologist said about taking data for redirecting Lily's attention in the school setting, and how to categorize whether it's successful.


She said, "Wait three seconds before repeating a command, or her name.  If she doesn't respond in three seconds, that's an unsuccessful attempt."  So for a while when I'd call Lily, I'd count the seconds in my head before calling her again.  As time has gone by I've gotten a bit out of the habit, but it really does work.  

Vun!  Two!  Three!  Three Mississippi!

Three seconds seems like a ridiculously long time when you're waiting for her to turn her head and look at you, or do what you ask, but when the wait is rewarded by her compliance?  Well, it seems just about the right speed.  


So, Instead of repeating the command or her name three times in rapid succession, growing increasingly frustrated over her failure to register, I try to remember to count to three, and sometimes. . . maybe even a most of the time, she'll drag her attention away from whatever it was and focus or comply.


Last night I gave her a bath.  I'd washed her hair, conditioned it, and rinsed it off, and I was ready to lather her up and wash her legs, so I needed her to stand.  I get the soap all lathered up, and if I can't get her to stand, then by the time I pick her up, all soaking wet, most of the soap is rinsed off and I have to hurry and do it again before she returns to the warmer confines of the bathwater.


"Stand up, please, Lily," I said.  She was playing with her new bath doll, Belle and paid me no attention.


"Please stand up, Lily," I said again almost immediately, but this time I remembered to count.  I think I was already slowly ramping up into irritation that I'd have to pick her up again but caught myself.  I counted in my head. One thousand one, one thousand two, one thousand thr- and she levered herself up and stood for me.


I heaped praise on her (she was an exceptionally good girl all night, and soooo tired), lathered her up, and then had to support her a little as she tried to escape back into the warm water before I had her all done, and she giggled because she's ticklish, and so I lathered her up a little more just to hear her giggle a little more, before she wriggled free from my soapy grasp and settling contentedly back into the water.


I do find a much greater rate of success capturing her attention and getting compliance when I give her "a little time" to process.  Three seconds seems like a lot when you first say her name and start to wait.  Three seconds seems saucy . . . hell, it seems like gross insubordination from my older NT daughter, Emma.  But three seconds is no time at ALL to wait for success from Lily.  Win-win.  I get compliance and giggles, she gets praise and tickles.

Alright, You Listen Here, B!tc#!

This is a followup to my last blog, "Wanted?".  I linked it in case you're curious what went on before.  The summary is:  cryptic and foreboding email from the daycare that presaged the ouster of my little angel from their program.  When inquired about via email, I was deflected and told it was better if we just met. . . 

So between then and the meeting (which occurred this past Friday) I had scoured the internet for clues as to my rights, and as to the laws that govern daycares.  I felt I knew enough to be dangerous and stand my ground, to at least buy time, retreat to lick my wounds and call for help.  I was prepared to speak in polite tones through a cold, emotionless vacuum while pleading an emotional case and falling back to threat of legal action as my nuclear option.

Before I met my wife at home to drive to our meeting, I booked a reservation at a new favorite restaurant of ours, Cioppino, thinking a nice bottle of wine and some good food might do wonders to smooth over our soon-to-be ruffled feathers.  It would be a surprise for Leslie; maybe a little good news on top of bad would help even things out a bit.

My folks were watching the kids, so Leslie and I kissed them goodbye and I drove to the daycare.  It was almost six.  It was dark when we got there, just one more kid left to be picked up.  J--- was there with a worker, who, when the last kid was picked up a few minutes later, also left.

We sat at a large round table, our legs tucked uncomfortably under toddler-sized furniture.  J--- started the conversation by asking us something.  I don't even really remember what it was she asked, I think something to do with the visit to the daycare by our wrap BSC.  Apparently there was some misunderstanding between the daycare and our BSC.  She'd expected the director, J---, and she was nowhere to be found.  So Leslie took that one, essentially saying that the trip, while not a total waste, was to talk to the daycare about any behaviors they might be experiencing and to give them some strategies.  She told it politely, but made it plain that the daycare hosed itself out of an opportunity to pick the brain of someone who might have been able to educate them on how to properly treat Lily.

We discussed Lily's behavior for a bit.  Mostly we just tried to lay out why we feel Lily acts out:  over stimulation, escape, attention seeking, etc.  J--- was a polite audience.  She asked a few questions about the dropoff and I politely and diplomatically (and I'm not even being sarcastic here) sketched my opinion of how it was being handled currently (mass chaos unaddressed by staff) and she listened.  

This has got to be some sort of a trick.

We talked for a little longer about the kindergarten setting, how she doesn't need one-on-one there, just someone to interact with her and redirect as needed.  I made the point that data showed Lily was actually more attentive in the typically developing classroom when her aide was not right next to her, but "faded" and only addressed Lily as needed.  I felt this was a key to our defense against the possibility of "Lily needs one-on-one and we can't afford it" line of reasoning for booting her.  There was more nodding and listening.  And questions.

This was going well. . . too well.

J--- acknowledged how busy it is in the morning and discussed the multiple transitions Lily was experiencing.  First the main room, then upstairs to the little kids room (because of head count, staff takes some of the big kids out to their bus, leaving too many students behind with just one staff member), then back downstairs to the big kids room again when it's time for her bus to leave.  She admitted that staff hasn't been as attentive to the kids (not just Lily's) needs and that sometimes in order to break up the staff conversation, she'll go as far as to put masking tape x's on the floor and tell staff to "stand here" and watch the kids in the area.

And then she said it.

"What if you didn't drop Lily off in the downstairs room anymore before school?"

That was it.  My moment.  I have never been more ready for this shitfight.  It was going to be something like this, "Alright, now you listen to me, bitch. . . "

"What if instead you just brought her upstairs to the main room when you dropped off?  She's only downstairs a half hour before they bring her up anyway, and that would eliminate some of the transition issues."

"Wait. . . what now?" (I didn't actually say that, but I'm so glad I hesitated before jumping down her throat.  I mean, I was poised on the figurative balls of my livid parental feet ready to pounce on this woman.)

We sat in silence for a couple seconds.  My train of thought was completely derailed.  Not. . .stop dropping her off. . . stop dropping her off downstairs.  Um.  Huh!  I asked Leslie what she thought and she said something, I can't remember what, and then I jumped in and said it was fine by me.

We talked some more about strategies for changing Lily when she spits, for avoiding being bitten or hit, for when to engage her and how to redirect her.  We offered names and numbers of people who had already indicated a willingness to discuss how to handle these things with her staff free of charge.  And she wrote notes.  She took names.  She asked questions.

Then she offered to place two people as "lead" Lily staff members.  People who would work, if not one-on-one with Lily, at least make Lily a special focus and responsibility of theirs, one in the morning, and one in the afternoon.  And we jumped at that as well.

And then we packed everything up and she thanked us for meeting with her. . . and we thanked her for meeting with us, and she apologized and said she probably should have had that meeting a month earlier and that she bore some blame for how the staff had handle Lily and hoped this would improve things throughout. 

And Leslie and I got our coats on and walked to the car and got in.  J--- got in her car ahead of us and I saw the brake lights flare up, then dim, and then she drove away.  Leslie and I sat in the car in silence for a couple seconds before I raised an eyebrow and looked at her from the corner of my eye.

"Well, that went well."

And we laughed, both of us shaking our heads at the war we'd expected that had never come.  And we called my folks and she called hers (later) because everyone was worried.  And then we went to dinner and had, not a conciliatory bottle of wine, but a celebratory one.  

And it was good.

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

I like ending the blog there. . . you know cause o' the whole Genesis "and he saw that it was good" thing. . . but I wanted to add a footnote.  

These kids. . . people do screw them over sometimes.  Sometimes. . . maybe even MOST of the time they really really have to fight to get what they deserve, and we as parents really have to fight beside them or for them.  But it is nice to know sometimes, to remember, that not everyone is out to get them or us.  Some people just don't understand (and want to) and need to be pointed in the right direction.

Random shot of gratuitous cuteness (hers, not mine)

Wanted?

A couple of days ago I got an email from the daycare that said this:

"Leslie, Jim,

The mornings are becoming a very bad experience for the children in our care with Lily. She is hitting, spitting, and grabbing continually. I am not able to afford to have one staff member caring for her alone. My staff feels that Lily needs one on one care at this point. I know she is being observed this week, but I'm not certain of scenarios that could work. Please think about it, and would you like to meet with me soon to discuss possibilities?

Appreciated,
J---"

What went through my mind was, "they're going to try to kick her out of daycare." I was instantly on alert, instantly imagining my defense, instantly anticipating the ways in which the daycare was going to justify kicking my little girl out of their facility. I started searching through Department of Welfare (which governs daycares in PA) websites and Pennsylvania law sites, and ADA questions and answers. And then, assuming the worst, but hoping for the best, I responded:

"I'm not certain what you're talking about. This is the first I've heard of any problems. Has this been going on long? What are you suggesting? What steps have already been taken?

I don't agree that Lily requires one on one attention. She absolutely requires the attention of staff, and the understanding of her behaviors, but not one on one.

Can you explain a little about what your expectations are for staff at morning drop off (not just with regard to Lily, but with all the students)? I'd be curious to see if my observations of what goes on dovetails with your expectations for the kids' care.

Additionally, please let me know what your path forward is.

Thanks,

Jim"

The way I saw it, she was preparing to meet with us to explain why she didn't feel her daycare was the best fit for Lily, or the other kids, for that matter. What I had read suggested that she was required by law to make 'reasonable accommodations' for a special needs child. There had been no written documentation of any issues, though we were aware some of the staff had complained about the spitting. If there had been hitting, we'd received no accident or incident reports to sign (which is procedure).

The daycare staff can be. . . inattentive. I wanted her to lay it out there. I wanted to know what it was the staff was expected to do, because having dropped Lily off to the "before care" program for the past six months I was pretty sure I knew they weren't doing it.

That is my biggest problem. Lily can be a hand full, for sure. But she's a hand full that the daycare has been dealing with for the past two years. They know her. And while I don't agree that she requires one on one attention, I do know that the staff needs to. . . how shall I put this delicately. . . get off their dead asses and attend to her (and the other students') needs.

We exchanged a couple more emails. The response I got this time seemed even more ominous to me:

"Jim,

Let's just meet. Friday afternoon? Let me know if that works for you two.

~J---"

To me, that was the equivalent of saying. . . "I have bad news, and it's best that I deliver it in person." But that was me, planning for the worst and hoping for the best. I sent her an email arranging for a 6 o'clock meeting, and prompting her as to an agenda, whether she needed us to bring anything, and whether it would be just her.

She responded without the agenda, indicated it would just be her, and asked if there was anyone from staff we wanted to see.

This made me feel better. J--- is not the most sophisticated daycare director. I feel fairly confident that if she was approaching a family with a special needs child and informing them that they were booted, she'd bring someone with a little more gravitas. Maybe that's wishful thinking on my part, but if it's just her. . . I feel like "we got this".

My wife gets limited free legal consultation as a benefit at work. I had her contact an attorney to talk out our position prior to the meeting. The attorney seems to have been less than useless. She had a difficult time understanding our situation, and spent most of the time playing devil's advocate, explaining the daycare's position, rather than explaining our rights in this circumstance.

I feel like I'm as prepared as I need to be for this meeting. I've armed myself with enough information to feel like we can't be kicked out without at least the daycare making an attempt to solve the problem, and we have a couple potential options to explore.

As for our "rights", at first blush it appears that the daycare's ability to kick us out hinges primarily on two things: 1) whether Lily's attendance represents a threat to the safety of staff or the other children (if that's their case, they have not documented it to us, so I feel confident their. Even with documentation, Lily's biting, or pushing has historically been limited to cases where her hand is being grabbed and she's being compelled to go someplace with someone, or someone is getting too close to her face and she feels threatened. She has never gone out of her way to hurt someone.) or 2) whether Lily's attendance requires an unreasonable accomodation (hiring of dedicated staff, purchase of expensive equipment, etc). J--- might suggest that because she cannot hire an additional staff member to provide Lily with one on one, that means Lily has to go. My argument is that she does not need one on one, just less inattention on the part of staff.

The icky part of all this is that if in fact they want her out, and I fight the good fight, and lawyer up, and make things hard on them, and they take her back. . . what are the consequences for Lily? Nobody would ever do anything to get back at us through Lily, right? Right?? Is this the proverbial, sending food back to the kitchen and getting spit in your soup? If we have to fight to keep Lily in this daycare. . . do we ever want to keep Lily in this daycare?

Regardless I feel like there's some bargaining room here. I'm less stressed. I may leave this 6 o'clock meeting a total basket case, but I feel pretty good going in right now. We also talked to our wrap provider to see whether a TSS could be assigned to Lily for the brief time she's in the before school program, and for the brief time after kindergarten when she's in the after school program. If that's the case, J---- will get her one on one, and not even have to hire her. But we're still looking at that.

Regardless, we'll figure something out, and if it is the worst, well then we're prepared, and if it is the best. . . well that's just gravy.

No Rest for the . . . Well . . . Anyone.

It's 2:30 a.m. when Leslie asks me to lie down with Lily and try to see if I can get her back to sleep.  Leslie's feeling under the weather, and I, just recovering from a day where she had to take over my parenting duties almost entirely (sick as a dog), feel more than a little obligated to step up to the plate.


When I pad barefoot down the darkened hall and quietly open the door to Lily's room her big brown eyes are open and dancing.  She's happy and alert.


"I wake up?" she asks brightly.
"No, baby, you have to go to sleep.  Wake up in the morning," I whisper, trying to be as low key as I can.


I know Leslie had been in the room for a while at least, and wasn't able to calm her down and get her back to bed, so I bring Melatonin and she gamely allows me to administer it orally with a pipette.  Melatonin is a natural hormone that the brain secretes that helps regulate the sleep cycle.  When we originally tried Lily on ADHD medications (I have still not blogged about that debacle), the doctor prescribed Melatonin as a means to get her to sleep despite the stimulants she was taking.  The prescription says to take it twenty minutes before bed time, so I expect it to start working at least that much after I give it to her.  I've had a couple hours of sleep.  I'm patient.


She's making her sleepy sound.  It is a low guttural clicking noise in the back of her throat like she's sucking at the roof of her mouth.  She's made it since she was an infant, and it always presages sleep.  She rubs her eyes.  I close my own, thinking that if she sees my eyes closed maybe she'll stop trying to look at them.  Maybe she'll try it out.  I crack one open just a hair to make sure I'm not about to get the ol' Moe eye-gouge and to see whether she's buying the sleep I'm selling.


Her eyes are open, looking at my closed eyes.  She rubs the index fingers of each hand with the other fingers of  that hand.  It's hard to explain.  It's even harder to emulate.  Her index finger angles in and she overlaps it with the middle and ring fingers to scratch it.  She does this almost nonstop when she's awake.  The index finger of each of her hands is swollen a little, the skin is ragged in places, scratched and dry and slightly frayed.  I place my finger in her fist and her fingers straighten out and she grasps my finger, curling hers around mine.  I cup her fist in my hand and she quietly tolerates it, but does not drift off to sleep.


I stroke her hair gently.  I've noticed that sometimes when I stroke it very lightly, almost feather light, her eyelids will ease closed, only to snap open again as if in startled betrayal at being tricked into dozing.  She pushes my hand away.  My leg is draped over hers.  She almost never protests this at bedtime, and without it, she sometimes kicks free of the covers and meanders all over the bed, keeping herself occupied flinging pillows from it, or laying on her back, kicking the siderails as she looks up at the ceiling.  If I sense that she's trying to move her legs, I give her space to do so before snuggling her back in, trying to calm her body and get her back to sleep.


It's been a half hour.  She's still making her sleepy sound that we call her "clicky noise".  Her eyelids still occasionally drift shut only to open again.  I hear the door open and curse softly to myself.  Leslie is checking on us.  


"Did you try Melatonin?" she asks, innocently.
"Yes, Leslie, go to sleep," I almost growl, and she leaves almost apologetically, though she is only doing what I myself would have done in her place.


Lily is holding her stuffed puppy "Poopers" in her clutches.  She quickly twists her wrist 180 degrees, examines him, then snaps her wrist back 180 degrees to examine the other side of him.  She does this repeatedly.  I don't know if she's getting something visually from watching him, or proprioceptively from the movement of her wrist back and forth.  I just know that it's keeping her from settling down.


I take Poopers from her and whisper, "Poopers is sleepy, Lily.  He has to go to bed."  I'm inwardly irritated with myself for attributing a male gender to her toy.  I keep thinking it would be better for Lily if I automatically assumed girl genders for her stuffed animals.  Why should they always be boys?  I'm tired and almost mentally wave my hands dismissively at my thoughts as if to say, "shut up, you asshole, get her to sleep."  My patience is starting to fray a little.  It's been 45 minutes at least.


She is wet.  This is her version of "Suck it, dad, I told you I wanted to wake up."  She's fully capable of holding her bladder for a full eight hour sleep.  Awake she's held it as long as five or six hours.  I'm irritated.    No, I'm borderline pissed.  She was just on the potty 45 minutes ago.  Illogically I hold it against Leslie for sending me in to put her to sleep even though it has to be one of us; even though I want to do this for her because she's feeling sick.


Leslie materializes blearily in the hallway.  Our version of the chinese fire drill, the potty accident pit crew.  When one of us arrives to find Lily wet, the other changes the sheets (off go the old tires, on go the new) while the first changes the girl and puts her on the potty (in goes the gas, vwip vwip goes the air wrench, and the car is back on the track).  I've caught Lily before she can wet the sheets.  They don't need to be changed and I wave Leslie angrily away before she can spoil my martyrdom; before she can share in the suffering of a sleepless night and claim part of it as her own, devaluing all the good "credit" and license to bellyache that I'm building up.  I guess.  It's such a selfish and stupid way of looking at it.  We both work so hard to be good parents.  This is no balance book.  But I'm sleepy and already frustrated with the potty accident and thinking selfishly.


As I get Lily snuggled back into bed she struggles to sit up.  

"No, Lily.  Time to go to sleep," there is an edge to my voice now that I'm not proud of.  I think about Emma.  Emma will creep into our bedroom at midnight in tears because she's unable to sleep.  She gets so frustrated that she can't get to sleep.  Lily is not crying.  Lily doesn't care that she can't sleep, because she doesn't want to sleep.  She wants to wake up.  It's time to play.  Still, it must be frustrating for her to not be able to wake up when she's wide awake and be forced to try to go back to sleep.  My tone gentles and I tell her "First sleep, then wakeup."


It's difficult to entertainingly encapsulate two hours of time spent coaxing and cajoling, stroking and soothing a child in an effort to get her to sleep.  I am very tired and on edge at this point.  Melatonin is shit.  ADHD is shit.  I want to go to sleep.  I leave her to soothe herself to sleep and return to the bedroom, burying the monitor under my pillow so Leslie can sleep.  But Leslie isn't sleeping.  Leslie is worrying about what we're going to do tomorrow, because Lily will have been up for five hours by the time I drop her off to daycare at 7:00 a.m.  


"What are we going to do with her?" She asks.
"How the hell should I know?" I snap back without thinking, and immediately regret it.  I'm angry that she stayed awake the entire time she sent me in to put Lily to sleep.  Now we've both been awake since 2:30.  Neither of us have had any sleep.  We argue ridiculously for a few seconds about the efficacy of Melatonin as a sleep cycle regulator.  My side of the argument is succinct, articulate, "fucking melatonin doesn't work for shit."


We retreat to our respective chilly silences as Lily chatters to herself.  I listen involuntarily via the monitor that is muffled beneath the pillow I'm resting my head on.  An hour goes by.  The longer she chatters the more frustrated I get.  When I finally push up from my pillow and switch off the monitor it is 4:30 a.m.  


"What are you going to do," Leslie asks, still awake.
"I'm going to get her up and take her downstairs," I grumble, storming out into the hall.  But by the time I reach Lily's room, I've calmed down.  The decision to get her up has somehow broken the tension.  Maybe most of the tension was the stress of not wanting that decision to arrive, and trying to stop it and sliding slowly toward it despite my best efforts.  


When I open the door she is babbling to herself.  A pillow is on the floor.  The sheets are off her.  She is wet.  But I have regained my patience.  And I don't need as much sleep as most people.  I gather Lily up and tell her I'm sorry for yelling.  I tell her she's my big girl and we're going potty and changing our clothes and then we're going to wake up.  And then Lily climbs brightly down the stairs holding my hand.  


We watch TV for a half hour before Leslie joins us.  I apologize.  I tell her I'm sorry that I yelled.  I tell her I wasn't mad at her, I was mad that we couldn't get Lily back to sleep.  I was frustrated and I handled it badly.  We hug and I give her a kiss and tell her I love her and she shambles back upstairs to shower, sleep's syrupy inertia pulling back at her as she pushes toward the work day that is relentlessly and remorselessly bearing down on both of us, heedless of our sleepless night, as it always does and must.  And we have to wake up and bear right back down on it, as we always do and must, because we have kids and they have us.  

Just Before Daycare

Maybe the decision to send Lily to school today was a bad one.  I don't know.  She was visibly tired before I dropped her off at daycare and I was second guessing myself badly enough to send her teacher an email urging her to call me on my cell if she thought it would benefit Lily for me to pick her up early.  Leslie apparently offered the same on our daily parent communication log.  


The teacher emailed me later and told me Lily showed no signs of being sleepy and was ". . . doing great!  She's as chatty and motorically (sic) active as ever!"


That made me feel better.


Leslie just went to pick her up and texted me this, "Many accidents today...they ran out of clothes :-("


That made me feel worse.


Back to the ol' drawing board Jimbo.  You'll be a better dad tomorrow!  Chop off the peaks and use them to fill in the valleys. Don't ever climb too high and don't ever sink too low.  Tomorrow's a new day.
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Author's Note:

After reading some of the comments, I feel like I need to clarify something.  When we sit down during our IEP or meet with wrap to decide services, or introduce ourselves to a new specialist, one of the things that we're always asked is:  What are Lily's strengths.  We list her laughter and her love of dancing and movement, her cheerful disposition, her singing along with music, and her ability to sleep through the night.

She goes to sleep at 7:30 or 8:00 every night and wakes between 6:00 or 6:30 every morning.

I've read so many blogs by parents whose children are unable to do that.  I only glimpse how hard that must be for you and your children briefly on the occasions where Lily wakes and can't get back to sleep.  Last night was one such night.  But I can't tell you the time before that.  It's not really the same is it?  One night?  If one night sucks that bad what must ten nights be like?  Or a hundred?  Someone's always got it worse.  Those are words to live by.

Yertle The Turtle on Christmas Morning.

Lily likes to rip paper.  You'd think, therefore, that she must love opening Christmas presents because they're wrapped in the stuff.  This should be win-win for her.  Right?  Tons of presents, tons to rip open. . . but Lily doesn't like ripping the paper off the package.  She just likes to rip paper.  It's an important distinction (for her).  Even if we start the process, ripping off a little edge of the paper and allowing her to go to town. . . she'll rip off a little more then lose interest and wander away.

I am sooooo busted.

I even wondered if it was just the idea that we spend so much of our day telling Lily to be careful with books and pages, and not to rip, and taking books away when she's not gentle enough that perhaps she was conflicted.  

"I know I'm not supposed to rip. . . why are they fucking with me?"

But we found, on Christmas morning, that once the wrapping paper is removed from the packages, she's back in paper ripping mode.  Whatever it is that intrigues her about the process. . . perhaps it's that she can hold both ends, whereas it's harder when it's a box. . . I don't know. . . it kicks back into gear once it's just paper and not "wrapping" paper.

"Go to town," I said.  And she did.

So, on Christmas morning, after Lily had long since grown bored and antsy from the process of "opening her presents", we gave her paper and let her rip until she was content.  Emma facilitated the process.  Lily had two major entertainments on Christmas morning (neither related to opening her presents).

1)  Ripping paper

2)  Removing paper from the garbage bag.

Lily would rip, then Emma would retrieve and throw away, then Lily would remove paper from the garbage bag to rip again, and so on, until the paper was shredded and Emma would whine, "Again?"


After recovering from a tougher day at my parents house (on Christmas Day a little later, with all the grandkids and Aunt Dawn and my folks and my in-laws. . . maybe just too much activity?), we took Lily to Leslie's parents house for post-Christmas Christmas Day.  Applying the paper ripping principles we learned on Christmas morning, we let Lily loose on the wrapping paper.  With that to occupy her attention, she entertained herself for quite a while and stayed relatively happy. 

Garbage Angel

The floor was filled with ripped paper, and any time Lily found herself empty handed, someone was shoving another piece inside it until the big pieces were little, and the little pieces were confetti, and Emma laid on the floor and made garbage angels in the detritus.  While Lily sat atop an overturned wicker basket and it reminded me of Dr. Suess's Yertle the Turtle.

"I'm Yertle the Turtle! Oh, marvelous me!

For I am the ruler of all that I see!"

Oh Marvelous Me!

If you're willing to deal with the mess (as my in-laws so graciously were), it's a nice way to occupy your disinterested kiddo on Christmas morning and keep her out of trouble while you open the rest of your presents.

Though it was almost its own blog post, the above is short enough that I'll sidebar it here.  


Lily had a great Christmas.  There were several things she latched onto straight out of the gate.  That almost never happens.  Even when we "know" Lily is interested in something, there's no guarantee that will translate into her liking it when it's opened.  This Christmas she received a bunch of different things that she immediately took a liking to:  A play piggy bank, wooden eggs with "emotions" painted on them and a story book to accompany, "Jingle" (which was actually a birthday present, but it all sorta runs together when you have a December birthday), and a grocery cart with various boxes and plastic foods inside to name a few.

The Night Before Christmas: I Know. . .

Yeah, I know, it's probably been too long.  It's definitely approaching the point where I can no longer remember specific details about the evening and start waxing rhapsodic about things that I will only later realize are not my own memories but things I read in a book or watched on a movie.  But that's because I'm starting to get older and lose my mind.  I did want to share some of our holiday fun, but at the time it just seemed like so much.

We host Christmas Eve at our house, so there's always quite a bit of activity then, plus Christmas is full, and then post Christmas Christmas, which is what all married couples do, where they travel from house to house, Christmas to Christmas, so that each family can be "Together on Christmas" if only for a little while.  Then after all the Christmases are over there's New Year's Eve, then the taking down of decorations and taking back of presents.  And, at least in our case, the visiting of various doctors and specialists and on and on.

So there's never been a good time to get started on a blog about Christmas Eve, so I'll try to make it short and sweet.  I'm almost pathologically incapable of that, but if it's under two pages single spaced let's agree that's "short".

Without delving too deeply into each family's Christmas Eve traditions, ours is this:  

Each Christmas Eve we host my sister and her kids, my parents, and my in-laws for supper.  We meet at our church beforehand, and afterward we return to our house.  We cook surf and turf; filets are grilled and lobsters boiled.  After dinner we drink wine or eggnog or whatever, eat Christmas cookies and open one present each.  Then everyone leaves and I put the spudlings to bed after reading, "The Night Before Christmas", which I could have sworn was actually supposed to be called, "A Visit From St. Nicklaus", but whatever.

I paid lip service to keeping my expectations for Lily's behavior grounded, and I think if I'm being honest, we did pretty well by her.  She was pretty good all-in-all, but for some reason she was pretty revved up before church.  Maybe it was the changing of the clothes or the taking of the pictures, but she was very stimmy and had a lot of weird facial tics going on, and I wasn't sure how she'd do at church.  I tried to take pictures of the kids before church, and these represent the best pictures of Lily, and Lily and Emma together (respectively) that I could manage.  

"I must look at you"

After about the tenth picture Emma started to lose interest and there are about ten more pictures of her draped impatiently over the ottoman, contorting her body into ridiculous poses of exaggerated disgust, praying for me to end the torture so she could go back to whatever it was she'd been doing before I started taking pictures.  

Worst.  Day.  Ever.

But really, we were just about to walk out the door regardless.  I mean, we do know our daughter.  We know our daughters, plural, of course, but we get Lily dressed up in her finest only a few minutes before we walk out the door, because potty training is still something of a crap shoot.  Heh.  Crap shoot.  So we don't like to put her in tights if we think there's a chance we'll be changing her a few minutes later.  So anyway, we got out in the car, and of course Leslie forgot something at the last minute.  And I'm not trying to throw Leslie under the bus because if she was writing this blog (apart from it being about half as long) it would be me in the role of the forgetter (this morning I had the kids in the car and the only thing stopping us from driving to daycare was my inability to locate the keys, which turned out to be in the coat I'd worn the previous day).  So I captured one last picture of Emma and I, pre-church.  Muuuuch better mood at this point because were were almost ready to go to church, people!  Happy Birthday, Jesus!

Yay Jesus!

And we got to church without incident.  Usually I sit in the car with Lily, because she doesn't like being cooped up, and I don't really like church all that much, so that's a win-win for us. . . but today, what the hell!  We went in.  And you know what?  She was pretty darn good.


Except then we did some preemptive damage control with the people in front of us.  We sorta laid it out like this (in a nutshell):  Hi, we just wanted to give you a heads up that our daughter is autistic, and sometimes gets into other people's space and may actually toss a cheez-it or two in your hair at some point during the service so. . . we'll do our best to keep your hair clean if you'll do your best to be patient with her and us.  


Yes, we played the autism card early.  I think that's actually sort of appropriate and polite to do when you know people around you are all packed in tight and may not be super understanding of a six year old tossing things like half chewed fruit snacks into the hoods of their coats.


Anyway, the older lady, she was probably in her early seventies, was really nice and understanding and even went so far as to get right down on Lily's level and attempt to make friends with her.  Which was when Lily slapped her right across her face.

"And that's why your daddy is going to hell."

And then I said, "Hahaha, in your face, lady!  I told you she would get in your personal space!  But would you listen?  Noooooo!"


Of course I didn't really say that.  I was mortified and we apologized and moved Lily into the pew behind us with my sister.  Actually, it was funny because my in-laws and parents had gone early to get two pews saved for us, and I told Leslie, "That's a great idea, because then Lily will sit behind family instead of strangers, and it won't stress us out if she decides to yank on family's hair vs. random stranger's hair."


But when we got there, we still put her in the front pew until she slapped the friendly lady right in her friendly face, and then logic prevailed and she moved back to sit with her aunt.


It was pretty cool, because Lily doesn't get to see her Aunt Dawn as often as she'd like, so for whatever reason she was absolutely riveted by everything and anything that came out of her mouth, and they'd stand and sit and stand again (at the prompting of some unspoken shared catholic hivemind), and my sister talked quietly to her and kept her out of mischief.


All-in-all, it was a pretty good day for her at church, behaviorally, (lady slappings notwithstanding) and the only real issue she had was such a dramatic one that it could have tainted the whole thing for us, but I(we) was(were) really in that whole keep things realistic zone, and all "I don't know that lady, so Lily can slap her silly for all I care," so while it was sort of a bummer, it was nothing we couldn't move past.


I left just after Mass with Lily because she was starting to get a little antsy, and Leslie and Emma rode home with the rest of the family to meet us a few minutes later.  She stayed dry until we got home, where she had an accident and I changed her into jammies (why doesn't the blogger dictionary recognize "jammies"?) for the evening (it was about 5 p.m. at that point).  After dinner she started spinning out of control and that's when we applied the lesson from her birthday, which was:  "She doesn't like opening presents like we want her to like opening presents" and when it became apparent that she was extremely tired (lots of yawns, eye rubbing and "behavior"). . . I read her the story, and put her to bed, saving her extra present for the next morning. . . and it didn't faze her one bit.


The rest of the evening went great until the Bumpus' damn dogs ran through the open screen door and knocked the turkey on the floor ruining Christmas!


Or possibly that last part was a movie.  I told you it's been too long!

EEG Followup Fun

In case you weren't aware: Why the EEG?
In case you weren't aware: What happens during an EEG


I posted links to previous posts above, if you are reading this and saying. . . EEG followup?  What brought that on? And wanted a convenient link to the "story".


It was an ill-omened start to our trip to see the pediatric neurologist.  I got into a series of ongoing patience-related (or lack thereof) pissing contests with my wife.  Maybe that's not an omen.  Maybe that's just a shitty way to start a stressful day.  Inauspicious start?  Maybe that's the same thing.  Anyway, probably I was stressed out because I'd set up the appointment but didn't really know where I was going, and just prior to departure, Leslie hopped on the computer to check work email, while I was hoping to go over our route to the office with her (we were driving seperately).


After the initial pissing contest ended (in a tie. . . we were both equally douchebags) it was agreed that "we don't need no goddamn directions because we can just plug in the address to our respective iPhones and go!"  I put that in quotes, but she didn't actually say those exact words.


This led to another pissing contest when my wife took the lead and missed the turn her respective iPhone instructed her to take and required us to go a different route that her iPhone suggested as a backup.  It ultimately led us to an unmarked building and she then relied on my memory of the office (I had no recollection of the office) to determine whether it was the right office, motioning me to pass her in the one-lane driveway so that I could "take the lead" and get us there.  I thought we were at the right office, so I was thinking, (and this is a direct quote. . . at least in  my brain) "Why the hell am I passing you?  Park the van!"


Gestures were involved.  I'm not talking about the finger gestures you probably think I'm talking about, but the kind of angry pantomime you do when someone just cut you off and you're waving your hands wildly to indicate "I am so angry" knowing full well the person in the car ahead of you can't understand anything you're trying to convey but is getting the "I am so angry" gist of it.  Think of, "I once caught a fish thiiiiiiis big," only with more shaking involved, and you're definitely in the ballpark.  We "talked" and I explained my side of the story. . . that I had no idea where we were.

So we parked, and it was agreed that I should go ahead inside to see if this building was the "right" building.  That was our third pissing contest in which it was implied, more or less (from my perspective, of course, this is all entirely from my perspective), that I was allowing our child to be run over in the parking lot by walking away while my wife grabbed her purse, and I, more or less, responded by completely losing my shit and shouting in the middle of the doctor's parking lot, stopping just short of dropping all the eff bombs that I'd loaded into a wordless queue in my brain after the first two pissing contests.


It was fun.  Doctor's appointments can be stressful.  We're better now.


It was the right building.  So that was awesome.  And although we were about 5 minutes late, they were running about 35 minutes late, so win. . . um. . . win?  One of the bonus side-effects that an ongoing pissing contest with your spouse can create is not being really upset that you can't sit together in the waiting room and one of you needs to walk the halls with your child in order to keep her content and lessen some of the stress.  So I walked the halls with Lily, and we chatted and occasionally passed the windowed office in which Leslie waited, waving as we did so, and being alert to our "turn".


Leslie being the bigger man, apologized for taking her frustration out on me, and I apologized for dropping wordless eff bombs on her.  It was probably not my best apology work though, to be honest.


I think my frustration stemmed from:

1. Setting up every aspect of the appointment but not really having clear directions to it.
2. Not having any recollection of the office visit we'd made there 2 years prior.
3. Having to take Lily in to the appointment in the first place.
4. Stress

I think Leslie's frustration stemmed from:

1. Me setting up the appointment but not getting clear directions to it.
2. Me yelling at her while she was on the computer so we could talk about the directions.
3. Having to take Lily in to the appointment in the first place.
4. Stress

Lily, for her part, did great.  Entertained as she was by walking the halls, she suffered the weighing and measuring, the poking and prodding, and waiting in the examination room, with about as much grace as she has ever shown.  She seemed content to play with Jingle (her story-time stuffed animal buddy) for the majority of it, and only squirmed and wriggled a bit when I had to hold her on my lap so the doctor could check her reflexes.

After taking my mood out on the nurse for asking questions whose answers were located in the documentation she held in her hand, if she'd only troubled herself to look, I settled down and the doctor joined us to discuss the EEG results.  Normal.  BUT!  He recommended a "Prolonged Outpatient Video EEG" as a followup.  Why?  Because Lily had been moving around a lot during the standard EEG.

This elicited a spike of intense irritation that helplessness slowly washed away to dull anger.  Though I knew it served no purpose beyond "getting it off my chest", I said, "I asked for an EEG that would allow Lily to move around.  I explained that she was autistic and ADHD and that she'd move around a lot and I was told that was no problem; they see thousands of kids and many with similar issues."  In fact I had told them that there was no way she would sit still nor tolerate being restrained and they'd poo-pooed it.  Fuckers.

"Nineteen leads?" I asked.  

"Something like that," the doctor replied, nodding.

I suppressed another flash of irritation before I could say, "Something like that?  Or exactly that?" Because I'd been told the other reason the standard EEG was preferable to some other form of more mobile EEG was that the ambulatory EEG, for instance, only had four leads. . . four leads vs. nineteen leads meant much less data.  But this doctor wasn't the doctor who told me that in the first place, so beating him up about it was useless.

He also recommended a cardiologist consult, because fainting, in his words, "comes from either the brain or the heart" and he wanted the cardiologist to be aware of her case if the EEG led nowhere.

There followed a lot of apocryphal information that had to then be sorted out later because the doctor had no idea what he was talking about, including the following:

1. The spacious rooms at the hospital can accommodate both parents.  No, they only allow one to stay.
2. My nurse will set up the appointment and verify whether they can perform this procedure on the weekends.  No, she can't do that, actually.
3. My nurse will call the cardiologist to set up the consultation.  No, actually she's similarly unwilling to do that.

Doctors don't possess a fantastic understanding of the logistics of medicine.  They may be spectacular practitioners, but they all seem to feel that any of the shit that doesn't fall under their immediate supervision must necessarily roll downhill and their nurses will handle whatever comes their way.  They don't know what their nurses actually know, but whatever it is we want. . . the nurse or administrative assistant will take care of it for us.  Except they don't.  And by that time the doctor is on to the next patient (who he also tells the nurse will take care of that) and there's no closure to the whole, "my staff will handle your every wish" loop.  I didn't feel like fighting with the girl in front, so after getting phone numbers from her, we left.

Leslie took Lily for her Mc-Reward-ld's nuggets and fries and I drove back to the office, stopping at DiBella's to pick up a hot godfather sandwich on 'everything' bread with lettuce and tomatoes, NO onions, hot peppers, oil and provolone to go.  Now I wreak of garlic and suppressed rage, but am safe from vampire attack.

The cardiologist is going to want to see Lily.  I feel fairly certain of that.  He'll weigh her and get her height, and maybe even her blood pressure, and then he'll have a talk with us about what, if anything, he wants to do.  We'll both take a day off to do it, and fight Lily to sit down and not pee her pants and generally behave, just so we can have a conversation that could easily be done over the phone (if it weren't for that pesky height/weight requirement).  

And at the end of the next EEG and the cardiology consult, I feel fairly certain everything will still come back normal.  The most irritating thing about our "leave no stone unturned" attitude with regard to Lily is that regardless of specialty, whether it's neurology, genetics, cardiology, whatever. . . she's normal.  Just a puzzle.  

Yeah, no shit.

I wrote all this out probably better yesterday, then got some weird error.  I copied it so I could log back into blogger and paste it, saving the blog contents.  I logged back in and blogger had a draft copy saved.  The draft didn't have everything on it that I had in my copied version, so I highlighted the text and hit paste. . . except that instead of hitting paste I hit copy again. . . and completely removed all ability to retrieve that copied information, since I essentially just copied over it with the draft.


I was too pissed off about that to fix it yesterday, and I'm still too irritated to go through the whole post and make it what it once was. . . but that's it in a nutshell.


That night our fancy pediatric autism specialist guy called me to discuss the results and said he thought the EEG result looked very good and that the data didn't show any signs of the movement that the neurologist had mentioned might be present in the results.  He also said that although the tests were normal, he felt the fainting spell Lily experienced were cause enough to continue investigating and hoped we'd go ahead with the video EEG.  I told he we were planning on it.


His staff is supposed to call me today to discuss setting up our next appointment.


I apologized to Leslie more adequately that night.  Her day had continued to spiral into the depths of hell. . . it just was sort of a sucky day all around, with lots of waiting in line, being late for stuff, having technical trouble, etc.  I offered her a martini, but she declined.  I took Emma to baton and let her share the rest of her evening with Lily.


The day ended better than it began.

Proud of My Girls

I had a lot of time with my family over the holiday break.  The holidays are stressful and expensive and gut busting, but there's a lot of family time, which is awesome.  And the more time I spend with my family, the more time I want to spend with my family.  I think the only reason I feel like I ever want to go back to work is so that I can remember what day of the week it is again.  When every day is like Saturday, you stop being able to tell when one Saturday ends and the next begins.  The days start to blur a little and it feels disorienting.  Probably this is what retirement feels like, if you retire when you have two kids in grade school. 


On one of my days on. . . (Leslie and I swapped so that we always had coverage at home with the kiddos while school and daycare were closed. . . Leslie lost her mind and took both kids to Jump Zone and the movies.  Leslie's track record with these sorts of decisions is less than stellar, mind you.  She has a tendency to take a good thing and think, "yeah, this is a good thing, but wouldn't it be better if I jammed ten MORE good things into the same day???"  Usually this results in spectacular failures at some point and confessions of, "I know. . . I tried to do too much stuff!"


Contrast this with my style of parenting. . . "Okay kids, what do we want to watch on TV next?  Emma, can you hand me the remote?  My hand won't stretch quite that far now that I've eaten all those Christmas cookies."  


You can see there's probably some middle ground there.  In fact, Emma, who typically considers me the "fun one" at one point looked over at me and said, "Is there ever going to be a day when Mommy stays home and you go back to work?"  It was at that point that I thought perhaps I'd been mailing it in a bit on the "fun dadsmanship" and I looked over at her (from the couch) with a wry smile on my face and said, "We really haven't done much today, have we?"


So Leslie lost her mind (again) and agreed to take Lily along with Emma to a friend's party at Jumpzone.  Essentially Jumpzone is one of the many little franchises that inflates stuff and has kids jump on it for money.  In Leslie's defense, jumping on inflated crap is right in Lily's bailiwick.  Also in Leslie's defense, she didn't really know that 38 other kids were also invited and that it would be kid-pocalypse in there.


And Lily, predictably. . . wait. . . no. . . Lily had an awesome time!  She did not melt down amidst the chaos.  She did not slap or spit at other kids when they got too close.  She just jumped her ass off and had a great time.  SUCCESS!!!  Retire now, Leslie, while you're still Champ!


But she didn't.  Giddy with success, she accepted an invitation from my mother and father to accompany them to the movies with Emma and Lily after they left the Jumpzone.  Originally the plan was for Gramma and Papa to watch "Tin-Tin" with Emma, while Leslie took Lily to see "Chipwrecked".  But Emma said (and this is a direct quote), "Movies that have characters who speak in British accents freak me out."  And so she and Gramma and Papa and Leslie and Lily all attended the movie together!  


And Lily, predictably. . . wait. . . no. . . Lily had an awesome time!  Again!  She sat in her seat, she watched the movie, she stayed quiet!  And I will say, if there was a movie that we felt fairly certain Lily would be interested in, it was that movie. . . but there's still a huge gap between what seems like something Lily will like, and what actually turns out to be something that Lily likes.  


Sometimes I get a little too comfortable not going out, not testing the waters.  The "look".  The "confrontation".  Those things can be pretty enervating in the aggregate.  Sometimes it seems like it's just not worth the aggravation of braving the stares and criticism for something that you're pretty sure is pushing the limit.  But when you give into that complacency, you totally dismiss your child's potential to succeed at them.  And Leslie does a great job of pushing those boundaries, of changing venues, of leaving her/my/Lily's/our comfort zone and seeing . . . "can she do it?". . . "will she enjoy it?"


And she did it.  She fucking DID.  IT.  She sat through a two hour movie without behavior or incident.  She jumped for a half hour or an hour (or more. . . I'm a little hazy on some of the details) with NT peers and did not hit, spit, bite, or otherwise lash out.  She didn't get hurt.  She didn't get left out.  She participated and had a blast.


Leslie did so much "right" in making this successful for Lily.  And I don't want you to think that just because Lily went to Jumpzone and a movie one day that I think that means she's now clear for takeoff at the next kids' birthday party regardless of venue.


What went right:

• Support.  lots of support from friends and family who understand.  These friends know Lily.  They included her in the Jumpzone plans because they thought she might like it, and their understanding of Lily made it easier to say "yes" to the invitation. . . they knew what they were in for.  Having family at the movie meant an extra set of hands to help with Lily in case things started to go sour.  
• Interest.  Jumping and chipmunks. . . right in her wheelhouse.  If it had been putt-putt and "Tin-Tin"??  Massive failure.
• Backup plan.  She always had an escape route just in case things went south and needed to get Lily out/away.
• Realistic expectations.  Without putting words in her mouth, I think she really didn't think things would turn out even close to how good the end result looked.  You can't go into a movie theater thinking your autistic ADHD daughter is going to sit and be a princess if you know she can't sit still and has no volume control (although in this instance, she could have, I suppose)
• The theater was empty.  It's nothing you can absolutely control, but if you go to matinees and watch movies that are a little older and on their way out of the theater in a week or so, you can probably catch that particular bottled lightning a pretty fair number of times/attempt.  Even if the theater had been full, Lily might have been fine, but having it be empty meant so much less stress on Leslie.  She could let Lily be Lily if she refused to sit still, and not risk "the look".

Leslie is great at trying new things with Lily, at not discounting Lily's ability to participate just because it's gone poorly before.  I need to stretch further for that particular metaphorical remote control.

There will be other movies in Lily's future.  We still have a birthday party to plan for her (after the fact, but before the holidays was just too much to jam in. . . even for Leslie) after all.

The title of this post is "Proud of My Girls", and I think it's obvious why I'm proud of Lily and Leslie, and so I'll just extend the blog a couple more paragraphs to mention why I'm proud of Emma, because it's not really part of the above story.

She has been SO GREAT with Lily, playing with her, watching her for a few minutes while we're in the bathroom or doing laundry in the basement, helping her with the iPad when she needs a hand.  She gets Lily's coat for her when we get ready for school.  She's been taking an interest in cooking, making the kool-aid for us, toasting bread, and even making her own Mac 'n' cheese.  She even asks to pump gas for me when we go to the gas station.  (Late edit:  I came home from work and the driveway was shoveled.  I was thinking. . . no wonder Leslie seems so stressed out, she shoveled before I got home!  But no. . . it was EMMA!!!)  She's 9 now, and I know she's got changes coming in her future, and her teenage years aren't something I'm necessary looking forward to, but MAN. . . she's building some serious equity in the good kid category to help pay for those teenage years.


I try to tell her; I try to tell all of them how proud I am of them whenever I can.  Probably I fail to include Leslie enough in that general praise, cause she's all grown up and stuff and not my kid. . . but I'm very proud of all my girls.


Emma said, "Does that mean you're finally going to pay me my allowance that you haven't given me for like a year?" 


"No.  I'm a little light this week.  Ask me again next week."


* eye-roll*