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Sunday, March 24, 2013

Weekend Update

Today Lily took the last quarter tablet of Tenex.  This week she'll go without completely, and possibly the week after that, just to see how she does.  She's still a little stuffy, but no longer warm.  She's been harder to get to sleep in the evenings in general, although I don't know whether to attribute that to the Tenex or being sick.  I suspect the Tenex.  

This was a really nice weekend.  

One accident all weekend, and I think it was possibly "preventable".  We gave her a nap because we felt like she was still fighting off whatever it was she had, and we didn't hear her wake up on the monitor.  Lily won't call out when she wakes up, so you almost have to "sense" it.  You hear the rustle of sheets or the change in breathing, a cough, or her cooing and you go to check and she's awake...this time we didn't hear her and she had an accident.  Apart from that?  Two days and nothing.  Awesome.  

horsey...she just hopped right on...
She was more "engaged" this weekend too.  More appropriately conversational, and more playful.  She rode me like I was a horse for godsake, and asked us to wipe the cheeto dust off her hands.  I had her carry her clothes hamper into her room, and when I gave her a bath, she ran her dirty clothes into her room and put them in the hamper for me.  

And now I look back up at the first paragraph and think...is this ALSO the lack of Tenex?  Because if I'm quick to point out the negatives of taking her off it, I want to also be open to the potential positives.  Is she more in tune with people OFF the medication?  I didn't notice as much of the heavy breathing or jaw clicking at bed time tonight.

She did do something again tonight that she did a couple nights ago:  she fell almost completely asleep, then started awake, and seemed very anxious.  She got agitated and started to whimper.  I tried a couple different things to put her back at ease, including asking her if she wanted me to leave (she said no this time).  Eventually she fell back asleep, but it was a more difficult process.  30-40 minutes to get her to sleep where once it was 5 tops.  On Tenex, she was her own happy little self until she hit the sheets, then within five minutes her eyes were shut and she was asleep.

As great as that is...the goal of the Tenex is not "sleeping pill"...so if she's "on" during the day interaction-wise, and it takes a little longer to get her to sleep...well, then that's a trade-off I think we'll take.

Tomorrow no Tenex at breakfast...or for the rest of the week for that matter.  Winter storm warning in effect...4-8"?  

Thursday, March 21, 2013

The Weaning Continues...

Yesterday was a "bad" accident day for Lily.  Certainly in terms of her recent near-potty-trainedness, you have to go back several months or possibly even a year to encounter a five-accident day.  But yesterday was one of them.  

Leslie, overwhelmed by people tracking in and out of the house, and the fifth accident as Lily's therapist was arriving and a friend showed up to take Emma to dance started second-guessing the decision to pull back on Tenex.  She's under some stress here because I think she feels that because my recollection of the pre-tenex behavior is different than hers, and because I was more or less happy with the medication, any decrease is "her" decision.

But it's not.  It's ours.  Even though I was happy with where she was at, I see no harm in weaning her off it and taking better notes this time around to see what we're really gaining, as opposed to just assuming we gained something.

Back to yesterday...it has been her habit to text me with the day's results from school:  good day/bad day...potty accidents/no potty accidents...ate well/ate poorly...etc.  

So yesterday was a bad day in terms of accidents, but a GREAT day in terms of her eating and her behavior.  Accidents have always really been a stress point for us for a variety of reasons, but ultimately we DO want her focused.

Leslie expressed her concerns/second-guesses regarding the Tenex and I told her we need to stay the course, that possibly Lily's body IS feeling different with this lower dose, and that she's not really sure how to process it, that once she stabilizes, we might see no difference in behavior/accidents/eating/sleeping...or big differences, but that this was JUST.  ONE.  DAY.  

By the time I got home, Leslie was back in the game again.  

Lily was stuffy.  It was my night to put her to bed, and although there was some minor tooth clashing...she went to sleep without too much trouble.  BUT...she woke several times, whimpering and crying, sneezing and unable to get comfortable.  Anticipating trouble, I went to bed early, fearing for my sleep.

Sure enough, Lily was up at 11, and 12, and 1, and 2...and at 3 o'clock we gave her motrin (she was mildly warm) and she fell asleep for the rest of the night (6 a.m.).  I found myself very impatient with her last night.  Usually I'm pretty mild and positive and supportive even in the wee hours of the morning, but last night I was just in a bad place.  I wasn't as patient with the sneezing in the face as I can be.  So rather than get upset with Lily about not being able to get calmed down or "be healthy" (both of which are outside her control), I woke up Leslie and "tagged out".  

I don't always recognize when I'm losing patience or when I'm not in the right frame of mind to deal with issues...but last night I did.  And luckily, Leslie was able to leap (slowly, in a lazy-lidded zombie shamble) into action, giving Lily the warm body, soothing words, and patient responses she needed to settle down and get back to sleep.  As a result neither of us slept particularly well, but Leslie probably took the lion's share of the work.  And she also typically needs more sleep than I do, so I know she's going to be tired.

Is this the Tenex?  Not sure.  I suspect it's just Lily getting sick that led to the accidents.  Not sure about the tooth clashing thing...that's something she did before we put her on Tenex, but it ALSO might be because she's feeling sick. Time will tell.

Anyway, Leslie just got home and shot me off a text to tell me about Lily's day that I purposely misunderstood because I'm "funny"...


And Leslie was so tired, she didn't even comment.  Or it wasn't funny.  But that doesn't sound right.  Anyway, you'll all be happy to know that Leslie didn't have any accidents today and neither did I.

(But also that Lily rebounded from a five accident day to zero).


Wednesday, March 20, 2013

PANIC!!! PLAGUE!!!

The affliction is characterized by chronic acute...cuteness.
Before everyone panics about the "epidemic" and the new CDC numbers associated with this CDC Survey...
 

 You should first read the paragraph at the bottom of the news story discussing the survey that says this:

"It's also controversial.

The new statistic comes from a national phone survey of more than 95,000 parents in 2011 and 2012. Less than a quarter of the parents contacted agreed to answer questions, and it's likely that those with autistic kids were more interested than other parents in participating in a survey on children's health, CDC officials said."

To recap what that said...they called 95,000 people. Less than 23,750 agreed to participate. They believe it's likely that those who did participate were more likely to have a vested interest (i.e., were autistic or had autistic children). So, no medical records, just a phone survey with parents.

1:50 is the number the survey returned. And that's a good thing for parents of kids with autistic children, not a bad thing.

First of all, understand this: Children either are or are not autistic. Adults either are or are not autistic. Surveys and censuses do not create autism. They just expose it to public scrutiny. So while you may have mixed feelings on the news that the CDC believes the number of autistic people is growing yearly, the number they came up with is a good thing for you or your loved ones.

Why? Because the more inflated the number (and that's not fair, I'm saying inflated like it's a fact that the number is grossly overestimated) the more concern, the more research, the more funding, the more treatment, the more press, the more exposure, the more "awareness" the more "acceptance".

What if...
 

What if next year the CDC does the survey again and it comes up with 1:40? And then what if the year after that they came up with 1:35? What if one day everyone was autistic to some degree or another? What if the number was 1:1?

How would the education system look if instead of autistic children being the "drain on public resources" they were just like every other kid? What if they had to do away with IEP's because every kid needed "special" accommodations in order to reach their full potential, so they had to change the way school looks entirely? What if students were taught according to their strengths and didn't spend all day working to shore up their weaknesses? What if every student could relate to every other student's neurology and struggles? What if EVERY parent understood what you were going through? What if the government, recognizing a true need started pouring money into education because it was the best way to address the needs of their growing autistic population?

If you're autistic, or have an autistic child...you should be celebrating every CDC survey that comes out with ridiculously high numbers...they mean your issues are getting serious media and political attention. They mean annoyingly ubiquitous (and often wildly inaccurate) press reports about cures and statistics, problems, abuses and intolerance that actually get your child's (or your) struggles noticed...validated...dare I say...addressed.


So...

I don't believe the number. I don't think it was arrived at in a particularly reliable fashion. I don't think it presages any epidemic...but...I'm cool with it. Because my daughter is autistic...everybody else is just playing catch up.

If you don't feel like waiting for the government to help out autistic adults and children, please consider supporting Lily and her team "Just a Lil Walk" as we walk in May, by registering to walk, virtually walk, or donating to ABOARD in the name of "Just a Lil Team" here: Sign Up Page.

It's easy to sign up and join the team, then we can all walk and do our part to help support the needs of our ever-growing autistic population.

Monday, March 18, 2013

It's Never Black & White (And I don't mean Oz)

from website:  http://joeltalksmovies.bangordailynews.com


This is not a movie review.  Or at least it's not the review of the pictured movie, so much as a review of the experience we recently had seeing the movie...it'll make more sense once you read.

For my daughter Emma's 11th birthday we went to see Oz:  The Great and Terrible.  She had eight or so of her friends with her, and a couple mom-friends of Leslie's came to help.  I brought Lily, but we had arranged it so that Lily wouldn't have to sit and wait through Emma's birthday party (which was held the hour before at the theater) and could instead go straight into the movie.  We figured it would make it easier for her.

The theater was more crowded than I liked, and Emma picked the row (which was closer to the back), but we positioned Lily such that she wouldn't be kicking anyone in front of her, and her mom and I were flanking her.  

She did pretty well.  She was quiet, and enjoyed the theater, her eyes on the screen as the new movies were  previewed.  But she wouldn't sit in the chair.  She's short, and probably the people behind her could see over her, but they were younger too, and so I started getting stressed a little bit when our attempts at getting her to sit were eliciting angry responses from her.  The more we coaxed, the more worked up she got, getting louder with her "Nos" until finally, the man from the row in front of us turned around and angrily said, "You need to get her to quiet down."

And I went cold all over, and my heart started to race, and I vowed that whether or not I agreed with the sentiment, I would not meekly apologize for my daughter's outbursts (which were quiet understandable). 

 I've been in this position before.  A woman complained about Lily's volume and I, embarrassed and wanting nothing more than to be polite, excused myself and moved to a less crowded area where Lily could be Lily...but I burned the whole time, my heart racing, and my mind imagining revenge scenarios and open letters to newspapers that would excoriate her for being such a callous bitch. 

The truth is THIS time we were still in the previews...and so I fired back, "Why don't you pay attention to your business, and let us handle ours."  All in all, I felt like that was about as subdued as I could muster without names or profanity.  Leslie picked up Lily and carried her out and down the steps to the front of the theater where it was less crowded, but I was was still seething.  

He said something else...I don't even remember what it was.  "Why don't you shut up?" I think I replied.  I sat there fuming a few more minutes, trying to calm myself down and master my emotions.  In the row beside me and in front of me were eight 11 year-old girls there for my older daughter's birthday party.  I was conscious of Emma, sitting there, seeing/hearing this all unfold.  She wanted nothing more than to have Lily at the theater on her birthday.  She was so excited to see her when we came in.  

I felt my pulse pound like a threat of violence and I excused myself to take the "backpack" (glorified diaper bag) down to Lily and Leslie at the front of the theater.  I walked behind the guy and his wife.  I wanted to kick his chair, very nearly did...but stopped myself...that's all I needed on Emma's birthday, was to get in a fist fight in the theater and get escorted out by the police.  

Instead I said, "You're a real piece of work."

"You used bad judgement bringing her here," he replied...of course he replied.  Of course he was unrepentant.  Why would he be sorry?

"You're an idiot," I said, by way of goodbye, internally applauding my ability to make a statement without injecting "fucking" into it and joined my wife.  

The movie started but I couldn't concentrate on it.  I was so...fucking...mad.  And the worst part of it was that on some level, I knew we should have put Lily in a place where she wouldn't be disruptive to other theater goers if she misbehaved, which put me in agreement (to an extent) with the jackass barking at us from one row up.  We had done a pretty good job of planning our way into success for Lily...arrive late, seat ourselves protectively around her... And maybe that made it harder to get over. 

The girls were way in the back of the theater, left in the care of some friends who we hadn't even asked to take over (but they got it...it was one of those unspoken things).  

We'd have gotten there, eventually.  We'd have realized that Lily wasn't going to stand for sitting (heh...stand for...you get it) and eventually moved her somewhere she could roam a little between seats.  We'd done that with past theater visits and with trips to see the Pirates play.  It was just galling to have that fat sack of shit...erm...gentleman (still a little mad) in front of us call us out.  It made me want to apologize; "play the autism card" by way of helping him understand that we were working on it, while simultaneously making me want to punch him in his fat face and tell him to shut up and sit down and if he had a problem he could move...and that conflicted feeling made me mad at myself AND him.

Lily was very well behaved at the front of the theater.  She stood for the entire movie, but nobody was behind or in front of her, so nobody raised a stink.  She chatted happily, but nobody heard her over the din of the theater.  She was mesmerized by the colors and movement and not frightened or overwhelmed by the volume that the theater speakers reached then surpassed.

As the movie was approached its end, I took Lily up the steps and out to the car so that Leslie could pay the theater for the party, and collect the girls while I drove to pick up the pizzas for the girls to eat at our house.  I felt a little like a coward not confronting the guy again, but at the same time understood that no good end lay in that direction.  Leslie told me she was going to chat with him and I shrugged it off.  I secretly hoped that she'd shame him into an apology.

The result however was more what I expected.  She explained the situation to the man after I'd gone.  Explained that we were pushing Lily and challenging her and that we didn't want to assume she couldn't handle something until she'd been given the chance for herself.  He remained unimpressed, convinced perhaps more than ever that our judgement was flawed, that we should never have put her in place where we knew she could potentially impact the enjoyment of others.  Leslie told me his wife remained silent throughout.  

Leslie told him he had to live with himself and that he wasn't a good person.  Doubtless her vocabulary was similarly censored by proximity to so many impressionable young ears.  Ultimately she confessed she was left unsatisfied.

When we got home, the girls all played and ate pizza, and it was discussed briefly that they just thought he was a "bad man".  A "bad, mean man".  I wish sometimes that I was able to look at things that way again.  I wish that I could see things in the simple black & white way that kids do.  They're still in the "Kansas" part of the movies of their lives, but I've moved on to Oz, in full color and not quite what it seems.  I don't know...I want to go back to Kansas again.  I hate having to side with some fat jackass (no...his girth has nothing to do with whether he's right or wrong...but I'm still pissed, and it's my blog) "against" my own daughter.  

There's no place like home...there's no place like home.


Friday, March 15, 2013

Eat ALL the chips!

I promised myself that THIS time around I'd try to capture my notes about Lily and Tenex in a way that would allow me to better access them later.  BLOG POST!

For some reason Blogger has been very flakey about searches.  Stuff that I know I have labeled isn't coming up when I search for the label.  For example, I tagged a post that I did for our 12th anniversary and tagged it with divorce (okay...okay...stop...it was because I had tried to pull divorce statistics for special needs couples and I wanted to be able to easily find them later...because Leslie and I are NOT divorcing, and I was trying to contrast that with the data I had (or compare it)).  

Someone on Facebook made some statement about divorce among parents with special needs kids, so when I went back to find my sources for the information I had already researched; I typed "divorce" and Blogger returned nothing.  Anyway, I went post to post until I found it...and there it was, complete with "divorce" tagged.  So what's up with that, Blogger?  Huh?? 

Anyway...apart from Blogger glitches, I want to be able to find posts about how Lily reacts to her current 'weaning' from Tenex.  

Leslie and I have different recollections of where Lily was when we started her on Tenex last year.  Leslie recalls essentially that she was then where she is now...only THEN she wasn't taking meds and now she is, so she's rightly asking, "why are we medicating Lily for no reason."  My recollection is that she was grinding her teeth, biting, wringing her hands, heavy breathing, etc, much more than she is now and so I'm saying..."That's why."

In an effort to figure out whether the Tenex is doing any good, we're weaning her off of it over the next month or so and then reassessing where she is.

That said, she's very very stimmy of late.  Leslie and I talked about it a day or two ago.  She's been very stimmy leading up to weaning her off the Tenex...not just since we started the process (which was Monday of this week).  She's been more defiant.  She's been more prone to throwing herself to the floor.  More prone to meltdowns and biting.

Yesterday while I was trying to get her to put her glasses back on she threw herself to the floor and lay there on her back.  When I tried to put them on her, she reared up and then slammed her head against the floor.  End of glasses attempt.  

I'm not trying to trigger meltdowns.  I'm not trying to force her to do something she hates.  But there's such a weird moving target associated with figuring out whether her behavior is simple defiance or if she's overloaded and truly needs the break.  We need her to comply with our request (for the most part) and so when she's more defiant, the first reaction is to "make her", but when it becomes obvious how adamant her refusal is...well then is it behavior, is it meltdown, is it just stubbornness?

This morning she did not want to get off the potty.  She fought and fought and fought.  Finally once she got off (on her own), she refused to pull up her pants.  Would not do it.  Threw herself to the floor several times until she DID half-ass an attempt and I gave her credit.  She was so frustrated that she tried to bit the bathroom counter which WOULD have been amusing, had she not misjudged the distance and bonked her lip off of it, bloodying it.  She refused to go down the steps, so I ended up picking her up and taking her downstairs, while attempting to avoid gnashing teeth...

I don't know if this is Tenex-weaning.  I don't know that it's not.  Yes, she's been more defiant lately.  But she was sort of leading up to that prior to pulling back on the dose.  Leslie opined that maybe she's just feeling "off" because she's gotten used to how her body feels when she's on Tenex...but she's so teeny tiny she was only ever on a half tablet at night (now a quarter) and it should be out of her system by morning.

Anyway, I'll probably tag a few posts with my observations if for no other reason than to capture the memories that flee from my ever-less-reliable brain.

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

To more pleasant things.  Lily has been eating better in the mornings.  For years all we could feed her was yogurt.  Every morning...a cup of Dora Yogurt.  She's branched out recently, and lately she's been eating strudel or poptarts or cereal and some other stuff every morning.  Much better calorie counts.  She's still tiny, but she's getting more food in her.  

This morning I made a strudel for her, and after she'd calmed down from her morning meltdown, lying on the carpet of the family room face down, and kicking her left foot periodically, she sat down willingly and watched "Blue Nono" (Highschool Musical II) while she ate.  Then she wanted chips.

And it's breakfast...and chips are bad for you...but this kid is TINY...and so usually I try to at least get something good for her in her system with a chip reward.  So Lily asked for chips and I said, "First we eat yogurt..." 

"And then chips," Lily finished for me.

"Right, baby, and then chips."  

So I had her sit down at the table and fed her the yogurt and she ate THAT great, and then she asked for chips, so I broke four pringles into bite size pieces and let her eat them while I busied myself with cleaning from breakfast and getting stuff ready.  When she'd finished she got up and wandered around the family room watching TV before approaching me at the kitchen table (where I was writing a note to her aide/teacher in our communication log) and said, "I want blue fruit."  I had just finished writing:  "Breakfast:  Strudel, yogurt, chips (don't judge)"

"You mean blue berries?"

"Yeah!"

"Okay, baby.  I'll get you some blueberries..."

"And then chips," she finished for me.

"Okay, baby.  If you eat your blueberries I'll get you more chips."  And again she finished her blueberries without issue, and again I got her four Pringles, broke them into pieces, and finished writing in her log.  I added to the previous entry, "Breakfast:  Strudel, Yogurt, chips (don't judge), blueberries, and more chips (fine, you can judge)."

When she finished this, I told her she had five minutes before we would try on the potty and set the iPhone timer "duck" to quack.  When it went off, I paused the television and Lily walked to me at the table.  I said, "Okay, Lily, time to go to the potty..."

"And then I eat all the chips!"

Which made me laugh because I immediately thought of the Allie Brosh cartoon "Clean ALL the things!" that's so oft modified and shared on the interwebz, and I replied with a chuckle, "Yes, baby, then you can Eat ALL the chips!!"

And it looked something like this in my head...
From Hyperbole and a Half

Only the broom was chips, and the person was Lily.

So off we went to the bathroom, and when she was done (more like clockwork this time) she sat at the table and I got her four more chips and she ate those.  And then I remembered a picture we had taken of her at her cousin's birthday party one year at a Japanese steak house when Lily was three.  She was even less likely to sit still back then, but she was ape over Barney, and I remember when she started fidgeting and getting anxious and upset, I had given her her Barney and she had been.  SO!  EXCITED!

Seriously...SO EXCITED!!!  And I took a picture of her holding Barney over her head like he was fucking Excalibur and she'd just pulled it from the stone...or the Lady of the Lake...or whatever the legend of Arthur is, and every time I see the picture it just makes me so happy.  Her eyes were pretty crossy back then.  The glasses are to correct that.  But when I look at this picture, I don't think of the strabismus amblyopia...so much as a little girl so excited about Barney that her eyes just cross out of the sheer impossibility of how awesome it is to hold him in her arms.

AAAAAAAAAARRRRRRGGGGGHHHHHHH!!!!!!!
And so this morning as I thought of the Allie Brosh cartoon, it reminded me of the picture, and I resolved to make this:


It was a cute morning, despite a rough start...

Thursday, March 7, 2013

Quarter Platypus


Snorgtees "We are platypus" tshirt (I almost bought this for Emma)

Yesterday on Facebook, a friend's Aspie son was extolling the virtues of platypi (that they're unfair) and I explained to her that my daughter had a friend who was half platypus.  She asked whether the girl had venom-filled spikes on her feet, and I promised I'd ask Emma.  
"No," she said, "She just has regular feet."

So that question was answered.  As for the question of the girl/platypus, here's the story (from when Emma was still going to an after care program...two years ago).


1/4 Platypus
I give my oldest daughter a lot of credit for her smarts.  She's bright, and articulate, she reads well and gets straight A's, and so sometimes it's easy for me to forget that underneath it all she is still just an 8 year-old girl.  She is also an arguer.  I’m certain I have no idea where she gets it, but she'll argue minutia and technicality with all the confidence, authority, and yes, swagger of an expert witness (or her father).
Last night, preoccupied with collecting the detritus of our most recent trip to the library, bookmarks and books, due date slips and free book coupons and exiting the car to walk into the house, my daughter bent my ear with the tale of one of her new friends from day camp.  I'll admit I was only half paying attention.  The gentle trilling of her musical voice was background noise that only snapped into sharper focus when she said the word, "platypus".  I'm not sure why that caught my attention.  Perhaps my brain, already in auto-pilot, sensed that no ordinary conversation ever contains the word "platypus" and that attention should probably be paid.  I stopped her in mid-story and asked her to repeat.
"My friend at school is half platypus," she repeated.
"Like Perry the Platypus?" I asked.
"No, like she's really half platypus."
"No, honey, she isn't."
"Yes, she IS!" she adamantly replied.  This conversation (the line above and this line) was repeated perhaps three times, with each participant growing still more vocal in his/her assertion, until I realized I would get nowhere repeating my "argument", "no she isn't" louder and more forcefully.  I attempted instead to get to the heart of the matter.
"Why do you think she is half platypus?" We climbed the stairs to her room, carrying her new books.  I sat down on the bed and took off my shoes.
"Well, she told us she was, but we didn't believe her, so she said, 'you can ask my mom when she comes to pick me up, she won't lie', and when her mom came in, we asked her and she said she was!"  I took this information in stoically. 
"Okay, so her mom said her daughter was half platypus?"
"Yes," she confirmed, "And she said SHE was half platypus too!"
Ugh.  "Well," I started slowly, "she is absolutely NOT half platypus, but she may be pure bred odd.  Emma, in order for your friend to be half platypus (I didn't address the fact that her mother (also half platypus) would have to have mated with a half platypus father, feeling that the math associated with this would escape her, but focused instead on the easiest means for a full blooded human to beget a half platypus offspring) her father would have to be an actual platypus.  So. . . if her mother is human, and her father is a platypus, THEN she could be half platypus."
I rested my argument there.  I felt fairly confident in my victory.  Emma was quiet, thinking about this, perhaps.  I got up from the bed and carried my shoes to the closet. 
"Alright, I have to help your mother make dinner, go ahead and start reading and we'll call you down".  I left Emma on the bed with her book and her thoughts and started down the stairs. 
From the bedroom above, quietly, as if to herself, she said, "There might be a really handsome platypus out there. . . "
My initial groan preceded my resulting laughter. 

Wednesday, March 6, 2013

May 18th is Coming Fast

It's time again to push "the walk" a bit.  I know I haven't been bugging you lately about it, but I will, and you're forbidden from skipping over these until you've participated.  Hah!  Trapped you.

Quick recap:  We're doing a walk to benefit a local autism charity that has in turn benefited us by our association with it.  We have attended their Galas and their Santa visits and their seminars and their lunch 'n learns.  We have borrowed their books and gotten recommendations for doctors and met other parents and received pamphlets...and now...because all of the above crap is funded ENTIRELY via donation...it is time for us to attempt to give back.

And giving back to ABOARD doesn't mean paying back on a balance to zero things out.  It just means that the money we raise will be used to help some OTHER parent/autistic out there who needs information, or support, or guidance or whatever.  It means they'll reach out on behalf of parents whose kids are newly diagnosed and find people in the area who can talk to them (as they recently did by asking me to call a dad with a newly diagnosed daughter...ME??  (seriously I'm not sure what they're thinking on this one...but who am I to judge)).  It means they'll host more Autism-friendly visits like the Easter bunny visit at the local mall (with them taking care of marketing, staffing, scheduling venue, answering questions, cleaning up, etc...at no cost to the participants).  It just means that giving to them means indirectly benefiting other people who can use the help like we've used the help ourselves.

Lily will be walking again this year (probably the short route (1 mile though...pretty awesome), and there'll be shirts and swag and fun and camaraderie.  And if you CAN'T make it...you could be a virtual walker from wherever you are...and tweet pictures to me while I walk and live tweet it from Pittsburgh.  Let's say hashtag:  #justalilwalk.  And if you can't walk in person, and you can't walk remotely...or even if you can't walk...you could donate.  

This year we're hoping to get a sponsorship of $500 for t-shirts for the walkers and $2500 in donations for ABOARD.  

There's a link at the top of the page.  If you have any problems or questions please feel free to notify me.  We found a way around the out of country Visa problems from last year.  If you use paypal, go through ABOARD's Paypal (there's a "DONATE" button right on their website) and in the purpose or memo line, put "Just a Lil team" or "Team Walter".ABOARD  will see that when they get the donation, enter it in as an offline donation. 

Anyway...this is our one big fundraiser that we feel like directly benefits not only Lily, but all autistics in Pennsylvania...young or old....and their parents and caregivers, and it's all run via donation.  The more we give, the more they can provide.

This is easy as 1, 2, 3:

1:  Go HERE  and register as an individual (or virtual walker if you won't be here).
2:  At the bottom of the registration it says "Join an existing team" ...pick "Just a Lil Team"
3:  Give us all your money!

It's so simple!!

Anyway, please help.

Here's some eye candy to ease your pain.

Daddy, I feel sad that we haven't reached our goal yet.

Tuesday, March 5, 2013

My Compliments

Emma and Lily in the "yellow room"


My wife picked up Emma from a play date yesterday.  Sidebar:  I asked Emma last night if they still call them play dates and she said, "No.  We call them hangouts."  Ahem...My wife picked up Emma from a "hangout" yesterday.  We were talking about the parents, who seem nice enough, and who seem to like Emma.  Leslie told me that the other girl's mother thinks Emma is a really talented singer and that she should sing at the talent show this year. 

Emma will not sing in front of us, so we were trying to figure out how Emma had happened to break into song while she was at a friend's house, in front of parents she really didn't know that well.  I'm still not certain we got to the bottom of that mystery, but we dug a little deeper into why she wouldn't sing for US.

Leslie:  So would you ever just sing a song for us?
Emma (shifting uncomfortably in her seat):  No.
Leslie and I:  Why not?
Emma:  I don't know.  
Me:  Oh come on!  Why not.
Emma:  I don't...you guys will just compliment me.
Me (squinting at her):  And...you don't like being complimented?
Emma:  It makes me feel uncomfortable.

I thought about this a little.  I often have a difficult time accepting compliments.  They make me feel uncomfortable.  I'm not sure why exactly, but sometimes it's because I'm not sure the compliment is sincere, or sometimes because I'm not sure the person giving the compliment understands the context in which whatever I'm doing is framed (like when I draw or write and someone says I'm really good...what is the frame of reference...this is hard to explain...like if all you ever read are kid's stories, and then you read my blog and say, "Wow!  This is great!" maybe it's different than if all you read is Cormack McCarthy and you say, "Wow!  This is great!"  Hopefully that makes sense).  Anyway, I tried these explanations out on Emma to see if that was what she was feeling.

Emma:  No.  Not really, it just makes me feel funny.  I don't like it.
Me:  Hmm.  
Leslie:  What if we listened to you sing and didn't say anything nice?
Emma:  You'd have a look on your face or something.  It would still be weird.  And you'll tell me all the stuff I could be doing better.
Me:  What if we promised to just stare at you expressionlessly and when you were done just turn our backs on you and walk out?
Emma (laughing):  That might be better.
Leslie:  What if we insulted you?
Emma:  That wouldn't be as uncomfortable.
Me:  Sometimes I feel uncomfortable with compliments.  But when you get them, it doesn't matter whether you believe you deserve them or not, or whether you think the person giving them is being honest or not.  Just say, "Thank you."
Emma:  I know.  It's just uncomfortable.
Me:  We don't mean to make you uncomfortable, Emma.  We just want you to know your value.
Emma:  What do you mean?
Me:  I mean, I tell you nice things because I want you to know you're smart or funny or talented, or pretty.  I repeat them over and over so you always hear them from us and you never doubt that we meant them.  I want you to recognize how awesome you are.
Emma (shifting uncomfortably)

I sighed.  I'm still not sure exactly what it is, but I didn't want to push it any more.

Me:  You're a horrible little girl and an embarrassment to the family.
Emma (smirking and looking up at me):  Thank you, daddy.
Me:  You're welcome, baby.
 

Sunday, March 3, 2013

The 2013 Wine & Pairing Party

For the last six years or so Leslie and I have hosted a wine party.  Initially it was very informal and free form, with invitees bringing over various wines they enjoyed and cheeses or charcuterie or whatever they thought might be good, and we'd set it all up and just drink and eat all night.  It was initially just a family thing.  None of us really knew what the hell we were doing, but it didn't matter, because everyone brought wine, and most of the time it was unfamiliar, and we'd finish the evening and have picked out a couple new favorites to buy.
2011's participants...

The party morphed slowly through the years as Leslie and I started ordering wine flights at restaurants (where sommeliers selected good pairings for tasting menus) and we started really gaining an appreciation not necessarily for "wine" (which we really really...really already appreciated) but for the almost symbiotic impact of a really appropriate food pairing on that wine and vice versa. We started gaining rules and structure geared toward 'educating' while 'entertaining' until the party became what it is today.

Probably the first wine that Leslie and I ever tried where the pairing principal was revealed to us clearly was a Sangiovese.  We had purchased a salmon dish at the grocery store that was essentially salmon, spinach, and feta, rolled into a pinwheel.  On the cooking instructions, it said, "Pairs well with Sangiovese".  We bought a bottle of it and were vaguely aware that it was the grape used to make Chiantis...but really knew nothing else.

We cooked the salmon and poured a glass of the Sangiovese and really enjoyed how the flavors played off each other...they just "fit".  We knew what pairings were, and this was a good one.  We resolved to remember "feta/salmon/Sangiovese".

The next night we were watching TV.  It was late and I asked Leslie if she wanted a glass of wine.  She said sure...or possibly just stared at me like, "are you new?" and I poured each of us a glass of the Sangiovese from the previous night.

It sucked.  We almost didn't finish it (but each of us powered through like the champions we are).  That experience more than any other illustrated to us how the pairing impacts the experience.  Served with salmon and feta pinwheels the Sangiovese was spectacular; served by itself it was harsh and acidic like Leslie when she's hungry.  


I'm Batman, bitches!!*
*Not actually Batman...it's Mardi Gras
The guidelines for the yearly (soon to be twice yearly, I suspect) wine pairing party are relatively straightforward.  First we select a region.  (We've done Australia, South America, and this year Italy (since we started doing this by region)).  Next we select grapes from that region.  We pick enough varieties that each guest/couple gets one assigned grape.  The guests select a wine made from that grape, research the wine, and research a pairing.  Each guest brings two bottles of the wine they selected along with one dish (some cooking is often required) to the party.  We pick a theme (two years ago it was Valentine's Day, last year it was Mardi Gras, this year it's "Italy".  We decorate and set up tables and once everyone arrives we take our seats and begin.  

We make up a menu and organize the tasting by dish (salad/appetizer, fish, meat, dessert, for example) before the event.  The menu lists the wine vitals and the dish name.  The first group stands up, presents their wine, talks about pairing choices, pours the wine and serves the food.  The second group preps their food after they've tried the first group's pairing...and so on.


This year's menu
What we've determined is that 1) one bottle is not enough but two bottles is too much.  2)  The invitation list must be held under a certain number lest we all simultaneously black out in my basement, and 3)  Keep open flames away from the paper menus.


The presentations have become increasingly informative and entertaining (but at LEAST entertaining) through the years and at the end of the evening, everyone leaves with a copy of each wine presentation (typically) and a recipe for the dish that paired with it, and I clean everything up while Leslie passes out in bed.  ("That happened ONE time, Jim!")* 

*possibly not an actual quote...possibly it never happened.  possibly.

Sorry for all the background, but I figured I'd turn this into a blog post and OUR presentation would be available for "All the world".  You know...at least the portion of the world that reads this blog.

This brings us to 2013, and our (Leslie's and mine) grape selection for the party:  Sangiovese.  Full circle!!  I'm like the Charles Dickens of bloggers!

Side-note, every time I type "Sangiovese" the spell-checker on Blogger wants to correct it to "Angiosperm"...not a wine drinker, Blogger?

Anyway, on to the presentation:

Sangiovese grape:  2009 La Maia Lina Chianti

Okay, okay, before anyone gets upset and cries foul and starts saying, "You guys cheated last year too!" Yes...yes, we cheated last year.  Yes, the wine we brought was NOT South American, but Spanish.  This isn't about last year, this is about THIS year.  You people have got to let it go.  And Chianti *IS* Sangiovese.  Or perhaps it's more instructive to say that this Chianti is Sangiovese.

As most of you have probably already figured out (and I can't write this after your presentations to be sure, but I assume you'll have done the math) many Italian wines and certainly those Italian wines grown in the Chianti region of Italy (see map below) take the name not of the varietal from which they are made, but from the region in which they're grown.  So although it may seem as if we're cheating like last year, I can assure you we are not.  This Chianti, "La Maia Lina" (which means the little pig) is entirely 100%* (give or take...DOCG requires that Chianti wines have no less than 75% Sangiovese grapes, but no actual percentage is specified on our bottle) Sangiovese grape blood.  

Which reminds me:  Sangiovese means "The Blood of Jove".  Jove is to Italy what Zeus is to Greece, so you're about to drink the blood of a God.  A God!!!  And if the stories I've read about drinking the blood of Gods are any indication, you'll probably all leave our house tonight with super powers (or possibly just feeling bulletproof)You're welcome.
sangiovese:  blood of jove
Sangiovese:  Blood of Jove
Sangiovese grapes are the number one planted grape in Italy.  They account for 10% of all the grapes planted and Sangiovese wines (with Chiantis and Brunello and others) account for most of Italy's wine exports. 

sangiovese:  number 1 grape in italy
We're number 1!  We're number 1!

Chianti:  The Chianti region, as you'll see from the map, is like the hot pink patchwork midway up the front of the leg of some colorblind Italian stripper's thigh boot.   Actually, Chianti is just the speck of dirt on that patchwork, because the patch itself is Tuscany.  Chianti is the subregion IN Tuscany. 
In fact, Chianti translated MEANS "Speck of dirt on front of stripper's thigh boot". Or something.

Chiantis are characterized in their youth by their predominantly floral and cinnamon spicy bouquet. As the wine ages, aromas of tobacco and leather can emerge...again, like a stripper's boot. Really, Chiantis are like the stripper's boots of the Italian wines.  

The tasting notes for our particular Chianti indicate that it is (according to The Wine Advocate):  "...a soft, sensual wine with generous fruit and an open, inviting personality. The fresh, vinous style is best appreciated upon release."  Much like...class???  Anyone?  No.  Not like a stripper's boot.  Here's where the analogy breaks down.  More like a stripper. Or perhaps a hooker.  That was a trick question.

Taste:  red fruit, strawberry, and raspberry

Nose:  asparagus, green pepper, and red fruit


Overall Rating:  88.
The acidity in Sangiovese wines make them very flexible (again like Italian strippers, but possibly like their boots as well) with food and wine pairings, particularly with Italian cuisines that feature red sauce, as well with as beeflamb and game.  It pairs well with fresh herbs.  It pairs well with many mushrooms and milder blue-veined cheeses like Gorgonzola.

We've prepared a dish of petite filet with Gorgonzola and porcini mushroom sauce.  

Buon Appetito.