Thursday, June 20, 2013

Summer is Coming.

A lot of ground to cover...but I'll still make it relatively brief.

Since the last post...well, the post BEFORE the last post...the post about the walk, lots has happened.

Okay...yesterday when I was writing this post, I also had the story about the pool included in it.  THAT story ended up being so long that I just made it its own post so this one would still be relatively brief (as previously promised).

School's out for summer, for starters, which presents a whole new set of scheduling challenges to work out, Father's Day happened, which we hosted, and we took the kids to Kennywood again. 

Summer Schedule:
Lily is struggling a little bit with the new routine.  She's still pretty happy go lucky, but there's been a little more biting, a bit more screaming and slapping, and more overall...what?  Stubbornness, I guess...foot-dragging, shouted "No" responses...then compliance.  So her accidents are up, her behaviors are up, and we're not doing her any favors with new TSS support for the summer who she has never met.

We're just sorta playing it by ear, trying to always keep in the back of our minds:  She needs time to adjust to this new 'routine', whenever she struggles.  And she does struggle BUT...she's also still very much "Lily"...happy spinny dancey giggly Lily.  So no biggie so far.  This made me think of the troubles that many of our kids have when Summer arrives with its chaos and freedom from the structure of the school routine...which tends to manifest itself in...behavior/anxiety/issues.  This in turn led me to think about The Game of Thrones, and House Stark and the doomy "Winter is Coming", which finally led me to THIS meme...which is a little on the late side in terms of being a timely meme that people will find funny, but I'll trot it out next Summer...

And before I continue with my two week look back, I want to toss in a couple caveats...
1)  Probably someone will find this offensive, but I chose the cat as the sigil of House Autism because there have been lots of comparisons in writing about the similarities, but also because there is a perception that autistic people like cats, and in my heart of hearts, I really hope that nobody feels like this is a hateful stereotype or that I think autistic people ARE cats, or that ALL autistic people like cats or whatever...but the puzzle piece is out, and a rainbow didn't really suit the meme.
2)  Because the "Winter is Coming" sigil for House Stark is a wolf, I wanted the House Autism sigil to be an animal of some kind, but not anything scary or savage or whatever.  And because of the above-referenced cat stuff...I thought...KITTY CAT!!
3)  Shout out to my niece (she thinks she's people) Pamook.  Lauren, if you're reading this, I stole a picture of Pamook off your instagram and turned her into a silouette and then added eyes a nose and whiskers to make my sigil.  So...famous kitty!
4)  The idea of the meme is that, like House Stark, who preaches being prepared for the coming of winter and all its terrors (white walkers and 100 years of shit weather), autism families need to prepare for the coming of summer and ITS aforementioned terrors.

Sorry...but past memes have been misunderstood because I sometimes think people know what I intend in my brain when I put stuff down on "paper".  It's a fault of mine.

So on the first day of Summer break, we took the kids to...

I feel like we learned some lessons from the first trip, and even more from this one, and hopefully we can apply it to "the big dance" amusement park-wise in August when we go to Orlando.  But the kids had a blast.

Some lessons:
1)  Take a friend for Emma.  She can ride on the fun rides while we take Lily on the Kiddyland rides.
2)  Take two cars so that if Lily gets overstimulated, we can leave if needed, or just leave when it's bedtime, and let Emma stay and ride with her mom (since I don't (not that I'm scared or anything)).
3)  Identify a quiet uncrowded area to just let Lily walk without hand holding or pushing or pulling or let her unwind and recharge.
4)  Find a McDonald's either to eat before we go to the park...or after we leave it.

Father's Day:
Happy Father's Day to all the dads out there who are active participants in their kids' lives.  Fuck you to the dads who aren't.  Fathers' day isn't FOR you.

Anyway, LOVELY Father's day in the backyard of our house.  We got ribs and cornbread and I drank Moscow mules and we opened a couple gifts (one of which was a graphics tablet for my PC and another of which was marshmallow skewers for when we have fires in the back).  And the baby Jesus made it stop raining so that we could enjoy.

Wednesday, June 19, 2013

Holes in Summer Coverage (and pools)

One negative result of being a dual income family is that when school is out you have to get 'coverage' for your kids.  A couple weeks ago we sat down to figure out what that would look like with our parents and got the majority of the schedule hashed out.  There were a couple days where we couldn't get anyone in, and one of those days happened to be the second day of their summer vacation:  This past Monday.

So Monday afternoon, after Lily and I went for a nice walk through the neighborhood,  I decided to get the pool fired up.  The "pool" is one of those $50 - 60 Toys 'r' Us jobbies where you inflate the rings.  It's maybe 6' in diameter.  I pulled it out of the bag and inspected it for damage.

Two weeks prior I'd driven Emma to the bus stop and heard this bizarre "Whooshing" noise.  It sounded like nothing so much as a strong gale force wind blowing right outside my window.  But it disappeared whenever I stopped the car.  So I got out to look.

Under the front bumper, wedged beneath the front of my car, was the plastic bag with the pool inside it.  I stuffed it in the trunk of my car and knew there'd be issues.

So I inspected the pool for damage and there, at the bottom, were three pea sized holes.  Dammit.  I used to have a patch kit, but I must have thrown it away.  I looked for anything that might fix the hole and eventually settled on packing tape.  Because of course that will work.

But the GENIUS idea I came up with was to fill the even smaller baby pool (we take it to the beach so Lily has water to play in that won't drag her out to see if we turn our backs) on top of the tape, then fill the bigger pool and hope that the weight of the little pool on top of the tape would seal it.

And it sorta least until the bigger pool got SO full that the baby pool started to float.  

So then I had the genius idea of filling the baby pool even MORE because then it would be weighted down and not float.  The stress of the extra weight strained the seams of the baby pool which sprung a leak and began slowly losing air.

It was a goddamned disaster at the amusement park...BUT...Lily came out and played in it anyway, and if the leak was slow enough to make the sides least it stayed together until the end of the day, because...

...Emma was doing volunteer work at Leslie's company.  This involved lots of work with animals.  Collecting eggs, milking chickens, shearing the horses, etc.  I'm a little unclear on the details, but she's doing it all summer, and loving it. 1 (that very same Monday) she came home with very sore feet because we had wanted her to try the first day with her tennis shoes and then tell us what sort of work boots she might want.  (We'd gotten wind that the other kids were wearing duck boots and Emma was skeptical.)

So she wore her shoes (which were apparently too tight) all day and ended up with very sore little tiny feet.

And at the end of her long day, I told her to take off her shoes and her socks and just dip them into the cold water of the slowly slumping husk of the concentric fun zone I'd stupidly constructed for Lily.

We'll buy a new pool for Lily.

And Emma had seen her fellow volunteers wearing their duck boots and decided she too would get duck boots...and in her size...and so we went to LLBean and bought her duck more foot soaking required, perhaps.


The End.

Wednesday, June 12, 2013

The Walk

I keep putting this off.  It always seems so monumental after all the up front effort and sound and fury of the walk itself dies down to pick it back up again.  But it's worth it.  I'll try to stay somewhat brief.  I think last year's recap put most of you (who were around for it) to sleep, and I want to recognize the effort, the generosity, and the "give-a-shit" of Lily's friends and family...and extended internet family.

Let's first just "do the numbers".  Numbers are easy, and it'll be a nice comparison.

This year we used last year's kickass actual number for our aggressive goal...and beat the shit out of it.  So now NEXT year we'll use this year's kickass actual number for our goal and based on the chart (charts, and also hips don't lie.  But mostly charts) we'll raise close to $5,000.  Maybe.  Also based on the year 2016 or 2017 we'll have 27,000 walkers.  Possibly my math will break down before then.  But CHARTS!

So in terms of how we did fundraising for ABOARD...we did awesome.  In terms of how we did against the other teams, however, despite mopping the floor with all but one team last year...THIS year some of the teams got big donations at the last minute and passed us at the finish line.  All in all I'm just excited that ABOARD had a successful walk...but...ultimately, I want to beat their asses next year.

What I've figured out is that we need one or two corporate/local business sponsors to make big donations.  A couple of the teams had donors who gave in excess of a $1000, or who had fund raised in order to write a big check for the walk.  If I want to keep growing the amount we give to the charity each year, that's what we'll have to do:  find a donor with an "in" to their corporate giving program.  This year my company did not contribute.  I have no "in".

This year we had a better handle on where things were and what to do, and ABOARD took it upon themselves to print out the labels that it took me so long to fill out last year (because we got one for every 5 walkers or something), so things went a little smoother.  Or at least it seemed that way to me.  I'm not sure how it was for all the walkers.  I try to talk to people, but they're with their families, which then fracture and disperse along age lines, with the kids finding the kids and the grown ups finding the grownups...and a few floaters hovering close to the kids AND the grownups so they can sort of participate in conversation, but also watch the kids.  It's hard to visit with everyone, or at least it's hard, after a certain point, to remember who you have and who you have not visited with in order to make sure you got everyone.

I hope we conveyed how much we appreciated everyone's support of us and Lily and of the charity.  But I sorta doubt I kicked ass in that department.  So I'm sorry if I didn't.  I felt a little scattered despite the additional ensmoothening that ABOARD provided.

The walk was great.  It was the best day of the year to that point.  Warm, not hot, sunny and clear and bright and cheerful, and they were playing music and having the crowd do stretches and there was dancing in the street and much rejoicing as we took off from the starters line and marched...EVER.  SO.  SLOWLY...past the starting line before the crowd started thinning by velocities...dopplering out past the starting line until we could lengthen our strides and get to doin' some serious WALKIN'.

It was fun.  People got shirts and some swag and a nice walk in downtown Pittsburgh and raised money for an awesome charity.  And I really love you all for contributing or walking or sharing updates or whatever.  Just thanks.

Here are some pictures from the big day:

Thanks everyone for helping make this another wonderful walk.

Monday, June 3, 2013

Break a Leg

I closed the refrigerator door too hard.  The magnet, part of a "package" from the photographer who shot the girls' dance pictures, slid off the door and broke.  Emma's leg was severed just above the knee.  Bad omen, that, just a week before her big dance recital.

When she came into my office and saw it lying on my desk she gave me a disappointed inquiring look, and I shook my head and said, "Sorry, Em, I knocked it off the fridge.  I have to find some glue and put it back together."

The following week her mother took her to the dress rehearsal.  Dress rehearsals always run long.  I honestly didn't expect them back for five hours, and in fact, I think they arrived just shy of that at four and a half hours.  Despite the time, though, both were animated.  

Leslie was gushing.  Apparently strides were made.  The performance was spectacular.  I would be SO impressed. Emma fell three times during didn't even matter because the rest was SO GOOD.  And so on.

I was dutifully intrigued.  And not even dutifully so much as genuinely.  I wanted to see the show.  Leslie's a tough sell.  If she thought the dances (Jazz/ballet/contemporary/acro) were good...certainly she was the "dance mom" of our family.

The next day was the recital.  I got home a little early.  They'd ordered pizza so we could eat and run.  The recital didn't start until 7, but Emma had to be there early, and I really only had about a half hour to eat before I needed to hop in the car and drive Lily to the performance.  Leslie took Emma within ten minutes of my arrival, and Leslie's parents soon followed to go save seats.  

Lily looked tired.  Lily looked more than tired, she looked drained.  She walked over to me and put her head down on my chest as I sat eating my pizza.  And...just stayed like that.  For her to initiate any sort of snuggle is rare.  For her to maintain it almost always means she's sick.  She broke away from me after about five minutes to sit down at the chair next to mine at the table.  She climbed into it and briefly put her head down on the table.

"Are you okay, Lil?"  No response.  A response is 50/50 anyway, so I didn't read too much into it.  I fired a text off to Leslie, who was already at the auditorium.

It was 6:21.  I was going to leave the house by 6:30 in order to get to the auditorium by 6:40.  The doors didn't even open until 6:30, but it gets pretty full in the parking lot, and although Lily is not a spectacular waiter...better not to have to walk/carry her from a half mile away than to suffer a little whining inside the auditorium, and the recital started at 7:00.

Lily loves the recitals.  We have the last two years recitals on DVD, and we watch them probably twice a day every day.  They are called Pink and Purple (for the color of the graphics on the outside of the DVD) and Lily knows all the dancers' names and sings along with the songs.  I knew once the show started she'd be fine, I just wanted to see if I could get her a little more comfortable.

I checked her back and she felt cool.  But sometimes she perks up if she has a little dose of Tylenol in her to...dampen...whatever it is that's making her feel "off".  We give her Tylenol with a syringe...just squirt it into her mouth and she swallows it pretty easily.  The trick though, is to get that first taste.  Once she does, she usually drinks it out of the syringe instead of making you put it in her cheek to swallow.  

She really fought me, ducking her head away, pushing the syringe.  "Lily, this is going to make you feel better, baby.  You just need to take the medicine."  She wasn't buying it.  I finally held her arms and made her take it.  One long squirt and she swallowed it and it was done.  Or was it?

Because the next moment she was throwing it up, throwing it all up and not just the Tylenol  but the Tylenol  the raspberry ice drink, and the pizza, all mixed together...on her shirt, on the carpet, on the couch, on me.  And it really was all my fault.

At 6:34 I texted Leslie to tell her that Lily threw up.  I was so crestfallen...I really really did not want to miss this recital, not any part of it.  I was dashing from sink to Lily.  Lily remained remarkably still while I sprinted back and forth trying to clean the couch, the carpet, and her.  I finally cleaned enough that I needed to get her in the bath.  I ran upstairs and started the water and ran back downstairs to get Lily.  We stripped off her clothes and I wadded them into a ball outside the bathroom.  

"I'm like The Wolf from Pulp Fiction, Lily.  We'll get you cleaned up right away."  

I think fast, I talk fast and I need you guys to act fast if you wanna get out of this. So, pretty please... with sugar on top. Clean the fucking car.
But unlike Winston Wolfe, my brain jammed on the topic of what to do with Lily once she was clean.  Was she sick?  She wasn't acting it now.  Put her jammies on her and wait for the sitter?  Take her to the recital?  It was six of one and a half dozen of the other...or as my wife used to say, "six half dozen of the other."  I was stuck in a loop.  I called Leslie.  

"What should I do?"

"Just get her here and we can figure it out later."

Fair enough.  That was all it took.  Whatever the loop was, she nudged me out of my ineffective orbit and all the pieces started falling into place:  Lily washed and clean, new clothes on, my clothes stripped off and me redressed, dirty clothes soaking in the washing machine, couch cleaned, carpet sprayed and wiped.

At 6:51, 17 minutes after "the mess" I texted Leslie to tell her I was "Just leaving".  Then I called and told her to have one of the grandparents meet me outside to take Lily so I could park the car.  I was sweating from stress and exertion, but on my way. 

At 7:00 Leslie told me that the lights were dark but they hadn't started the opening number yet...but I was pulling into the parking lot, my dad was out front waiting.  I slowed to a stop in front of him and got out of the car, walking around to Lily's side to unbuckle her and hand her over to Papa.  He took her in as I drove away to find a spot.

I caught a break and found a parking spot relatively close and hurried into the building, catching Lily and Papa in the hall after producing my ticket at the entry and hurrying to catch up.  We entered the auditorium.  It was still dark, and my eyes adjusted just quickly enough to dodge a couple chairs that had been placed to block two of the rows near the back that the camera crew was using to film the recital.

I was still sweating, but the auditorium was cool, and I was inside, and we weren't late.  The show hadn't started.

What a show!  She was great.  I'm sure the other kids were too, but I couldn't take my eyes off her.  She glowed...she emoted...she danced so well.  And I don't know shit about dancing, but Emma has something when she's on stage.  She's captivating.  Meh...I'm just her dad, but she seemed so ON that night.

I took Lily home to the sitter midway through the recital when there was a big break between Emma's dances.  She was back to normal, happy Lily.  I got back in plenty of time to watch the rest.  It was beautiful.  I was elated.  I hadn't missed it.   

Signs can be interpreted so many different ways.  I wrote a post about it once on Childswork.  The severed limb from the kitchen magnet likeness of Emma?  I guess that was just the universe telling her to "break a leg".