Blinded by Science - Part 1

SCIENCE!!!

“Do not worry about your problems with Mathematics, I assure you mine are far greater.” - Albert Einstein

Take Einstein's quote, insert the word Science in place of Mathematics, and you're at the crux of my problem.  I'm not a scientist.  Thank GOD the "far greater" problems (quotes are there not because I'm implying their problems aren't in fact far greater, but because it's from the Einstein quote above) scientists face in studying something are not the problems I face as a non-scientist.  And, while I graduated with a Bachelors Degree of Science in Chemical Engineering, let's face it, I was drunk 50% of the time I was in college and copying off fellow students' papers the other 50% of the time.  I possess a decent working brain and understand rudimentary scientific process, and the fact is I have some worries about the science of autism.  These are not the worries of a scientist.  These are the worries of a parent who is trying to get his daughter the best care he can.

My current worries about Science:


1)  How to determine what treatments/therapies/diets/etc. are backed by science.
 While my understanding of the science of autism research is not what worries me, my understanding of how to interpret its results is.  Why?  Because scientists tell me that the best, most effective treatment for my daughter comes only from those treatments backed by solid scientific data.  So how do I determine that?  yes. . . yes. . . I know. . . Testimonials are not the same as Data.  Stuff like that helps. . . but I need more. 

2)  How to determine whose science is real science.

So.  Who tells me, the primary caregiver, which treatments are or are not backed by solid scientific data?  Scientists?  My pediatrician?  That in itself is a problem.  "The Tale of Two Scientists".  The easiest and most polarizing example of this for folks sympathetic to autism issues is of course, Wakefield vs. The World.  Or Anti-vax vs. Vax.  Leaving all the conspiracy theories. . . drug companies, corporate greed, government cover-ups, etc completely out of the equation, we're left with a group of scientists who made a claim, and another group of scientists who later disputed the claim.  And yes, I know all about what happened to Wakefield in the . . . heh. . . wake of it all.  It doesn't change the fact that as a parent, I can't even begin to tell which scientist is credible and which is not.  How do I do that?

3)  How to understand what constitutes an effective scientific study.
I have read descriptions of treatments that claim to be backed by science that have been ADAMANTLY  refuted as quackery by scientists.  When I look at the claimant's study. . . it looks very sciency.  (Totally a word).  I need to better understand how to read the studies themselves to determine WHY the study was quackery.  The most recent example I can think of is the Mercola study with the National Vaccine Information Center.  I read a review that sliced and diced it.  It was shady, it was shifty, NVIC was in business with Mercola, the participants were being treated by Mercola using Mercola's products. . . how could this study be "Scientific".  And yet, as a parent, looking at it from the outside. . . I have no knowledge of the participants, or the relationship between NVIC and Mercola.  To ME. . . it looks sciency!  Are there things I can look at to see that things were done right?  Buzzwords like double blind, control, group sizes, peer-reviewed journal, etc?


4)  And while we're on the topic (see above) how can I tell what's a reputable peer-reviewed journal, and what's trash?  Because I've seen criticisms of studies that were nothing more than "it came from (implied scoff) The Journal of Insert Technical Sounding Title, so you know it's crap".  All those journals?  Yeah, they look the same to me.  What are the 'reputable' journals?


5)  How to understand whether I give a shit whether the study is sciency or not.  Because, let's face it, before ANY of these studies were backed by science, there was someone who was using them to treat kids with Autism, and at that time, they were NOT backed by science.  I think as a parent this one is one of the toughest and most guilt-filled decisions:  Deciding to attempt a treatment even though it hasn't been "adequately" studied.  Whose fault is that?  The lack of science doesn't necessarily disprove the treatment, it just means more study is needed.  I want to make the "right" decision, but science is telling me that the right decision is only to use treatments with proper scientific data backing them up.  And what we, as parents of kiddos on the spectrum know, is that time is of the essence.  So it's not like I can really afford to wait around letting my child's best, most treatable years tick away while scientists reach their conclusions.  Or can I afford NOT to wait?  If I decide to try a treatment or therapy or participate in a study with my daughter that later turns out to be (hindsight) backed by science, I just bought that much more time.  If I decide to try a treatment with my daughter that is later debunked by science, I'm the rube who wasted valuable therapy time on quackery.


Science is heady stuff, and scientists are a snobby and defensive (but ADORABLE) little group of know-it-alls.  No offense, scientists, but you know you are.  Hell, it's practically a point of pride.  When I read some of the stuff you write I think, "Wow, these people are really bright!"  And then in the next paragraph I read this same seemingly brilliant person poo-pooing the right of someone to criticize a study or therapy not based on the merits of that person's comment or criticism, but solely because that person lacks an advanced degree in that specific field of study.  When it comes to choosing care for ourselves or for our children, it's too important NOT to have an opinion and/or take a stand, and none of us have time to go get that doctorate in neurology just so that we are then welcomed to the debate on the efficacy of the treatment du jour.

"I don't believe it!
There she goes again!
She's tidied up and I can't find anything!
all my tubes and wires
And careful notes
And antiquated notions"

What I'm hoping I can generate from this blog, on its very own page (I'll assign a new tab to it after it's been up a few days), is a list of sciency links.  I have some already.  And I don't mean sciency bloggers necessarily, although I'll certainly post those as well.  I mean links to trusted sites that compile treatments or therapies that are (in the eyes at least of some scientists) appropriately sciency.  I don't intend to provide a database of what is or isn't. . . just links to resources to help me (and you, if you want) find out which studies make the cut, or perhaps links to "how to" posts that help you, a non-sciency parent, make sense of the data. 


I don't know how much I'll break it out, categorize and subcategorize, etc.  So I'll sort of play it by ear right now.  I don't have the answers.  Just lots and lots of questions.  I'm hoping you folks in the blogosphere can help me with this.  I know I'm still new to this autism parent blogging thing, so I'm worried I won't get the sort of feedback I'll need, but it's definitely worth a shot.


We need all the help we can get.

Weekend Update

I don't love Thanksgiving.  For starters, I don't love turkey, and I'm pretty tight-lipped with my emotional from-the-heart givings of thanks, so an uncomfortable holiday centered around a meal I'm only lukewarm about. . . it's nothing I want to devote a lot of time and attention to with a few exceptions:

Sorry about your car, but at least the McRib is back!

1)  Sometime on Tuesday evening, a tanker truck carrying black driveway sealant spilled its contents across a 39 mile stretch of the Pennsylvania Turnpike.  I was watching the news on Wednesday morning, mouth agape, as I saw pictures of what it did to people's cars.  When I left for work that morning, they said at least two hundred cars had been affected.  Most, if not all, were traveling to some Thanksgiving destination, and had to stop.  What a monumental fuck up.  The Turnpike authority blamed the trucking company.  I'm sure the trucking company will blame whoever loaded the sealant.  I'm sure they'll all look for insurance to cover it, and, as I watched, i couldn't help thinking. . . all those people are stuck paying for ALL of it, until the dust settles.  Nightmare.


2)  Mississippi cousins visited, and it was really nice to see them again.  My recently wedded sister-in-law and her husband came down, and it was also great.  Some highlights:  visited downtown, ate out, ice skated, roller skated, had Thanksgiving. . . some lowlights. . . lots of people, lots of activity and autism, not a super mix.  Honestly though, up until about 8 o'clock at night on Thanksgiving, Lily did great.  She started to spin a little out of control as the evening went on, and she has a tendency to kick my in-law's dog (okay, not so much tendency as uncontrollable need) but all in all she was very good.  The iPad, and all the one-on-one attention from her cousins and aunts and grandparents really helped.


3)  Lily has been using some really great appropriate language lately.  Her potty training seems to have stumbled a bit lately, but her special ed teacher offered that sometimes when her kiddos see a change in expectation/priority (we had prioritized potty training before Lily started Kindergarten in the Fall) they see some great advancement in the new priorities at the expense of some of the old ones.  She feels like Lily is doing a great job in class, but has seen a drop off in her toileting.  That's sort of a wash, I suppose.  Some of the things she's been saying:


Emma and Lily:
"Are you okay, Emma?"
"Yeah, I'm okay, Lily.  Are you okay?"
"Yeah, I'm okay."


The next few have been going on more frequently since we started playing with her AutismXpress app.  it has 12 faces on it, each describing a feeling.  She pushes the button and they get big and make a sound and animation associated with that emotion.  She perseverates over it.


Me to Lily:
"Lily, are you happy or sad?"
"I don't know, Daddy."

Emma, look at me.  Are you happy or sad?

Emma and Lily:
"Emma, look at me, are you happy or sad?"
"I'm happy, Lily!"
"Oh that's good, you're happy!"


"Emma, are you happy or sad?"
*silence from Emma"
"Answer the question!"

We hosted guests at our house, so I had an inflatable Queen size mattress in the basement.  I decided to let Lily and Emma loose on it before I deflated it and put it away.  It was such a hit, I'm not sure I'll EVER put it away.


"Daddy, it looks like fun!" followed by "Daddy, you want a turn?"


Lily drools, especially when she gets stimmy. . . or spitty, since her stims often involve her blowing raspberries.  But she'll wipe her mouth off if prompted.


"Lily, can you wipe your mouth please?"
"Oh, I'd be happy to."


And finally, her sister left to go upstairs to tell her mother something before returning.


"I want Emma."
"Well, you're in luck.  Guess who's back?"
"Oh, Emma!  Emma came back!"


It was all very cute.  Then she peed her pants.  Not really.  But it brings the whole appropriate speech vs. potty training theme I was going with full circle, so it makes my point seem more cogent if I say that.


4)  We got two trees up.  One is full decorated and the other is lit, but undecorated.  Within 10 minutes of being introduced to the newly decorated tree, Lily had three ornaments on the floor.  After "parenting" that frequency dropped down significantly.  Distraction, timeouts, trips to the aforementioned inflatable bouncy mattress-o-fun in the basement. . . whatever it takes.  Only four more weeks. . .


There was other stuff, some of it awesome, some not so awesome.  It was a very busy weekend.

Mall-y Old Saint Nicholas

Way back when this blog was new and shiny I posted a question about autism charities worthy of my tax credit contribution.  The overwhelming responses I got (not necessarily indicated by they underwhelming number of comments) were 1)  don't give to Autism Speaks and 2) find a local charity more directly involved with the autism community.

Lydia over at AusticSpeaks suggested A.B.O.A.R.D.  I had given to them the previous year, and they are local, and they had helped Lydia (who is also local) personally, so I felt like that sort of sealed the deal.  I gave to A.B.O.A.R.D.  They send out a weekly (or so) newsletter to contributors.

Within about a month of my donation, I received an announcement from them via their newsletter (sent to everyone on their mailing list).  Don't bother reading through it, the title pretty much say it all.  The mall was closing, but leaving Santa and his helpers in place, dimming the lights, providing activities, leaving the play area accessible and giving time slots for Santa pictures all to spectrum kiddos who registered.  

My wife got a similar email and we took turns sending each other identical emails saying what a good idea it was and asking each other if we thought it could work.

We agreed we wanted to get Lily to see Santa, and this looked like an awesome way to do it.  A day or two before the event, my wife called ABOARD (i'm not typing the periods anymore) and found out that all 50 of the time slots were all full, but to come anyway and talk to them and they'd see if they could get Lily in to see Santa.  We're such slackers.  I don't know why neither of us read about the registration.

Don't you touch my puppy or I'll cut you.

This past Sunday was the big day.  When we showed up, we got a number, 37.  That's a big number.  We were there about 15 minutes, listening to the story being read by a woman from . . . well I never found out where she was from, but she had a giant fuzzy bear with her so I figured she was probably going to be okay in Lily's book.  Lily didn't want to sit, and wasn't particularly interested in the story (although it's one we read to her on occasion about Curious George visiting a hospital on Christmas) but she digs furries.  

We hung out on the mat for a bit, dancing and spinning and occasionally revisiting our lounging bear friend, until it became apparent that additional entertainment would be necessary.  While my wife (have you noticed I never give her name?  It's a privacy thing, but honestly, you'd think I'd just ask her if it was okay and get an answer so I could include it wouldn't you?  I never remember to ask.  She follows the blog, maybe she'll read this and tell me) and Emma checked out the crafts, I took Lily to see the train, the malls version of the Polar Express (which wasn't running that evening).

At the train we walked back and forth from the engine to the caboose.  I asked her what color it was and tried to get her to count the cars (four) and identify engine/caboose etc.  She says caboose so friggin' adorably.  

ENGINE!!!!!

"Let's go to the caboose, Lily!" 

"CABOOOOOSE!!" *run run run*

"What color is the caboose, Lily?"

"It's geen, caboose is geen!"

"Good job!  Let's go see the engine now!"

"ENGINE!!!" 

"How many cars are there on the train?" *silence* "One. . . "

"ONE!"

And so on. . . 

After we'd played that game out, I approached the line with my ticket and asked how far along we were.  

"We're calling 12, 13 and 14 right now," was the reply.  

Oh.  Oh dear.  So we made our way over to the play area.  We were the first family to utilize that particular time killer, but were quickly joined by other families in the high twenties and low thirties (ticket numbers, not age. . . well. . . maybe both).  

Emma and Lily walked up the steps of one of the play bridges (meant to approximate the bridges over the three rivers here in Pittsburgh) and slid down the other side countless times.  Each time Lily climbed she would stand and chatter happily at the top of the bridge until Emma would prompt her, "Okay, Lily, time to go down the slide," at which time she'd dutifully plop down, slide to the bottom, then spin around, run to the other side of the "bridge" ascend once more, and wait for prompting.

A family with an NT son and AS son arrived a bit later.  It was cute the way their interractions mirrored Emma and Lily's.  The sons were older than our daughters were, but the NT son stuck really close to his AS brother.  He may have been 14 or 15.  The spectrum thing struck me then.  He seemed really coordinated to me.  He was running all over the place, jumping and somersaulting down the slides and steps, gracefully, even acrobatically.  He was so much more developed than Lily from a gross motor perspective, but he was completely nonverbal, and eventually (after much running around) he got a bit overstimulated and you could see him shrink into himself.  He became visibly upset, his face a mask of sorrow, and his parents asked him if he'd had enough and wanted to go home, and he signaled his assent.  They tied his shoes and he sat in a stroller.  He was completely wiped out.

It's just such a huge autistic world out there.  This kid was SO different than Lily.  As they left, the boys' mother gave me their ticket (we'd compared numbers when they joined us, they were 32).  My wife had taken the kids up to the bathroom while I held down the fort (purses, pink sling bags, coats) and I texted my wife that I'd meet her back at Santa, because a few moments earlier one of Santa's elves had been looking for "28" so I knew at 32 we were getting close.

Maybe we weren't as close as I thought, but we weren't TOO far off.  Emma crafted a letter to Santa on behalf of Lily and herself while Lily and I returned to the train and waited.  "31" was a gigantic group of kids from one of the local special needs schools so they took forever.  "28" had never been found.  We were next.  I tried to get Santa's helper to let us fill out the paper work BEFORE our turn but to no avail.  If I have any complaint with the process it would be that. . . kids on the spectrum/ADHD/whatever. . . let the parents fill out the paperwork before hand, because we had at least 45 minutes, then there are no stumbles at the finish line. . . the promised land. . . The North Pole in Pittsburgh.  BUT. . . Lily was a champ.  No stumbles there.  Just sayin'.

Sir, please remain a respectful distance from Mr. Claus

And take a look at this badass Santa.  Every year the Ross Park Mall gets a kickass Santa, but this Santa is the best I've seen.  

Santa Checklist:

Real snowy white beard - check

Eyes, how they twinkled - check

Dimples, how merry - check

Cheeks like roses - check

Nose like a cherry - check

etc.

Finally we were in the home stretch.  Lily's biggest issue was being confined to Mr. C's lap.  She was not afraid of him, and she honored his personal space enough not to tug on his beard (although she did give the little snowball tuft at the end of his hat a tug once or twice).  

After they sat (and the professional photogragher got three pictures from which we selected) Emma bent Kris Kringle's ear about puppies or some such while Lily, freed from his lap, orbited in fascination until Emma got down.  

When it was time to go she told him (prompted) "Merry Christmas" and (unprompted) "I'll see you soon".

The money shot.  Is. . . is that appropriate in this context?

On the way out we sort of let Lily walk ahead of us; pointing the way, and letting her go.  The mall was closed so there was ZERO mischief she could get into.  At one point Emma started laughing and saying "she is SO far ahead of us" and indeed, she had like an 1/8 of a mile head start on us.  I ran to catch up.  Lily, seeing me chasing her, ran to get away.  Emma and Lily and I went tearing ass off through the mall, giggling like maniacs until I finally collected her, whooshed her off her feet, then set her back down like an already spinning top, to tear ass off again, while my wife sauntered unconcernedly down the length of the mall.


When she finally caught up, I left Lily to her while Emma and I approached the exit.  I tried to get a picture of this, but failed.  Emma and I stood at the entrance, which goes west about 50 yards before T'ing with the rest of the mall. . . left (south) is Macy's, right (north) is the mall at large.  Standing at the exit, looking back, Lily was running away from her mother towards Macy's, giggling.  Her mother was looking at us, also giggling, running after her.  Then they disappeared around the corner of the T, before re-emerging, Lily again in the lead this time running north, my wife again trailing. . . still giggling helplessly.  *DING*  like a duck in a shooting gallery, reversing then *DING* re-reversing AND SO ON!!!  This must have happened like five times.


At first I thought she was playing with her.  But Lily was legitimately eluding her, like when Scooby and the gang are getting chased by the monster, and they keep emerging out of different doors sometimes being chased, sometimes chasing, until they all crash into each other in the middle of the room, and they pull the mask off the monster and the guy underneath says "And it would have worked too if it wasn't for these darn kids!"  Only they didn't crash.  My wife needs to get on the treadmill, or Lily is a future Olympic sprinter, because it was PATHETIC how long she was able to stay just out of her grasp.



The whole event was very cute, and really our first time capitalizing on an event in the "community".  I embraced it as an opportunity to do more than pay lip service to my acceptance of all of this.  It occurs to me from time to time, that the same sense of community I feel reflected in the people who comment/read this blog, and whose blogs I, in turn, comment and read also exists in "real life" (no offense intended, I'm aware you are all real as well).  And that the enjoyment/encouragement/support as I get from the people here (in this blog) exists "out there" in my community, down the street, at the mall, wherever.  So this was nice for me.  I'm much more outgoing here than I am in person, so it was a small step, but maybe next time at the next event I'll recognize the family who gave us their number and give them a "hellooooo" and offer the secret Autism Handshake and chat them up the way I chat you people up.  Seems reasonable, right?

The event was nicely done and organized.  I already feel good about having given to a charity that is involved directly in the community and helping kids with autism develop and have fun, adults with autism cope and get jobs, and parents of kids on the spectrum, participate and feel less "judged".

Emma sometimes complains when we split the kids up one kid per parent, to their respective events.  She likes when we're all together as a family.  This was a great chance to do that.  She loved seeing how Lily reacted to Santa.  And she was so proud of her for not yanking his beard, spitting in his face, or poking his eyes out (she is TOTALLY on the "Nice" list now).  

It was comfortable and fun and I never even ONCE looked over my shoulder to see if I needed to scowl malevolently at some douche for judging my daughter for spinning and dancing or judging me for allowing it.  That alone was worth the trip.

School Pictures

Ali Dani G. over at I'm Just That Way and That's Just Me, and Lynn (I'm not really on a first name basis with her, despite calling her Lynn just now) over at (the prolixly titled) My Life as an Ungraceful, Unhinged, and Unwilling Draftee Into the Autism Army, came up with an idea of sharing the joys of special needs school pictures.  Sidenote:  I'm not positive that Lynn's blog is titled that, or Autism Army Mom, since the site address is www.autismarmymom.com.  Maybe the "title" above is actually the description of the blog, not the title itself, in which case I retract the word prolixly (which is totally a word) from the description of the title.

Anyway, the idea of the blog hop is to see the funny (though sometimes sad/frustrating) consequences of sending a school photographer to snap cookie cutter pictures of our kids, who are often pathologically incapable of sitting still, smiling on command, making eye/camera contact or in cases even repeating "cheese" predictably.

The blog hop itself has been an utter failure in my opinion, primarily because all the pictures I've seen thus far have been cuter than a bug's ear and in no way support the concept of "funny" tragic school photographs.

And in fact, my own children's pictures, far from being tragic or amusing are fucking gold!  I mean. . . look at these kids!  In an effort to support the original requirement, however, I have offered up a couple of my old school photographs to show true amusing tragedy.  But that is later.  First. . . My kids' contributions.

We'll start out with Emma, the older NT sister.  I'm relatively bummed because although I have in my office every "school picture" taken of Lily starting from about three years before she actually even attended school, I have only the last two of Emma here.  I have a zillion softball team pictures, a hundred dance pictures, but only the last two school pictures.  Meh.

The blur is my fault.  I took pictures of the pictures and then cropped them on my iPhone, so a little distortion/blurring, and maybe even tint/lighting issues are the result of that, not the ineptitude of the photographer.

So, without further adieu. . . Emma's 3rd and 4th grade pictures!

Our only issue with her third grade picture was her hair wasn't perfect and she has a much sunnier smile, ordinarily. Still, all in all. . . nailed it! (blur is my fault). (Author's note.  my wife read this blog and took offense that I said Emma's hair wasn't perfect.  Her argument seemed to boil down to this, "I WORKED on that hair!" as if that somehow equated to perfection.  I didn't say her hair was BAD. . . I said it wasn't PERFECT, now go back in the other room so we can text each other more stuff)

Again. . . come on, Emma, let that sun SHINE, baby!  But it's still a pretty good picture. Rockin' the sequins 

Lily's up next. They used to take Spring and Fall pictures at the daycare, same school photographers. The only consistent issue with Lily's pictures appear to be her glasses. Sometimes the best pictures catch a wicked glint off the lights, but we can live with that.

Lily at 3. . . she's all chubby-lookin', like a little butterball turkey (just in time for Thanksgiving) . . . nothing a little autism won't cure.

Lily at 4. . . she's even SMILING for godsake!!

Lily at 5. . . best picture EVER!!!  (glasses were broken)

Alright. . . so, she could probably look happier in this one.  But not making any "weird" faces.  The hair is a tad mussed, but what do you expect.  Still, the expression on her face seems a long-suffering patience.  "Let's get on with this, please.  I have a juicebox waiting for me."

And finally, me.  As you'll see, things started off pretty well.  I mean, I was one damn cute kid.  Look at my gigantic 70's lapels.  You could hang glide with those monsters.  Children lost eyes on those points!  Fashion can be a sadistic mistress.

Favorite sweater.  I think you can see why.  Whatcha lookin' at, kid?  The birdie is over here.

Okay, good so far. And wait til you get a load of this. . . WOW!! This kid is one cute little bastard! Look at the eyes, the cute little smile. I'm practically melting just looking at that innocent little lamb!

Ohmygodohmygodohmygod, do you SEE this little cowboy shirt with the mother-of-pearl buttons!!! Don't you just want to pinch his cheeks and feed him????

And then eventually 7th grade happened.  And you know what?  My mom still told me I was handsome and that all the girls must be crazy over me.  Ugh!  You were such a liar, mom!  I was a goddamn train wreck.  What the hell is going on with my hair?  And those glasses?  Really??  Yeah, and as if my early teens weren't awkward enough, hmmm, how could we traumatize the near sighted awkardly skinny kid more. . . hmmmm. . . oh yeah!  Let's slap some braces on that kid, STAT!!

But the most disappointing thing about this particular blog posting isn't that my picture is the most awkward, it's that I couldn't actually find the really awkward picture that replaced this one my 8th grade year.  *shudders*  It's probably for the best, but I couldn't find the old pictures last night so my wife helped me by spelunking through the nightmare that is her office-cum-storage room, and I grabbed them on my way out the door this morning.  "You rush a miracle man, you get rotten miracles."

Filling in Valleys

We're having issues with Lily's eating again still. There was a brief time maybe two months ago, maybe three, that her eating actually seemed to be improving straight across the board. People at school and daycare were having some success getting Lily to eat.  We were having some success.  Now nobody seems to be having success.

Go Stillers!

My inability to get my daughter to eat really bums me out.  I think what makes her eating the "Perfect Bummer Storm" for me is that 1) she's already undersized, and 2) when she's hungry she's more prone to meltdowns/behaviors.  When she eats, I think my wife would agree, we can almost make our peace with just about anything else going on in her world.  When the bites go in and don't come back out it's like a weight is lifted off our shoulders (only to gradually crush us again by next meal time).

The last week or so she's been allowing just about anything to go in her mouth. . . then right back out again.  Oh, she chews it a few times; long enough for me to reach for the next bite, then plech. . . down the front of her shirt.

Our morning routine becomes even more problematic because we can't be as patient with her as we can during other meal times when we don't have places to be or things to do, because we want her to get a good night's sleep, but doing that means we have an hour to get her up, dressed, fed, and ready so that I can drop her and her big sister off at the daycare.

And lately our morning routine has gotten sloppier.  We put off feeding her until the last minute because it's such a frustrating process.  And that just makes compounds the problem because we know it's got to happen, and when you add the stress of needing to get out the door in a set, diminishing timeframe to an already stressful task, we're left with acceptance of failure, temper tantrums (ours, not hers), or being late to work daily.

Lily also spits.  It's her, "I'm pissed at you and I know you hate this, so I'm doing it" response to being forced to do something she doesn't want to do.  So. . . this morning, dressed in my work attire, feeding Lily until the last minute we need to get out the door, she spit a mouthful of peaches all over my shirt.  Fan.  Fucking.  Tastic!!

happier (dinner) times. . . 

I was good this morning.  Ever since her 'wrap' Psychologist told us to "put it on extinction" . . . ie. . . ignore it away, my patience level with being spit on has gotten better.  I don't know why, but knowing that ignoring the behavior is what I'm supposed to do makes it somehow easier.  That said, I was bummed and vented to my wife.  And I'm essentially just venting now.

My wife leaves early for work on Wednesdays so she can leave work to come home early in the evening and take Emma to dance.  I called her after the drop off and vented and she gave me the advice I always give her when she's in her low spots.  "She'll come back around.  She always does.  We just have to chop off the peaks and fill in the valleys and remember."

That's our little mini mantra.  We seem to overreact both ways.  We celebrate a little TOO boisterously and let ourselves get gobsmacked to heartbrokenness by subsequent setbacks.  Peaks and valleys. . . chop off the peaks, fill in the valleys, and you're left with something that approaches your new "normal".

The bright side is that, though Lily was upset at having to eat (until I set her free anyway), when I asked her if she was sad she said, "I no sad.  I'm mad!  I'm frustrated!"  We try to reinforce the labeling of those emotions with her and I think she's understanding the differences between happy/sad/mad and using them appropriately.  Because. . . she was not sad.  She was mad.

Just keep swimming, just keep swimming.

A Stitch in Time

I got a phone call yesterday about  mid-way through my day informing me that Lily had fallen on the playground.  Actually, the way it went down was something like this:

1:13 p.m.
"Hello, Mr. W?  This is the school nurse.  Lily fell down on the playground today.  We tried to call your wife but she didn't answer her phone."

The first thing that ran through my head was. . . 'is Lily okay?'  This was followed immediately thereafter by 'Are. . .are you tattling on my wife for not answering her phone?'

The nurse continued, "We think she's going to need stitches."

There was a long pause, during which I was uncertain what I was supposed to respond, so I went with, "What do you need me to do?"  The nurse responded that I needed to come get Lily.  I explained that my wife and I were both 30 - 40 minutes out and that we'd be there as soon as we could, but could Lily go back to class, since the last time I picked her up they had her. . . all 3'6" PDD NOS ADHD of her sitting in a chair, still; waiting until someone showed up.  That seemed like torture to me, but the nurse said, no, they were worried she'd bump her head.  Whatever.

As I was getting packed up to go, my wife called.  "I got a call from the school, what's going on?"

"Lily fell on the playground and needs stitches.  I'm going to take her to the Emergency Room at Children's," I replied sensitively (ish).

Waterworks.  Okay, possibly I could have couched my reply a hair more carefully, but I had stitches when I was a kiddo, and didn't really think it was any big deal.  I explained this . . . probably just as sensitively (ish).  It was agreed that my wife would meet us at home and we'd all go to the E.R. together.

1:45 p.m.
When I showed up to the school to pick her up she was sitting very nicely, reading a book with her visibly upset dedicated aide.  The nurse said, "Her bandage is soaked through.  I was going to change it as soon as you got here.  Do you want to see it?"

"Why?" She sorta caught me off guard.  I guess her thinking was maybe I thought the school was blowing it out of proportion because I'd asked her earlier what she wanted me to do, and I think she'd just assumed I'd  know that Lily needed to go to the E.R., instead of asking.  Maybe she wanted to prove to me that it really would need stitches.  I'm not really sure.  I continued, "I mean, I don't know what I'm looking at.  I'm relying on your judgement as to whether or not she needs to go to the E.R."

"Some parents like to see," she responded, a bit defensively.

I shrugged, "If you're changing the bandage I'll see it regardless.  Go ahead."  I felt like the whole encounter was a little "off".  Maybe it was just me, but it seemed like the nurse was ready to go to battle if necessary.  Maybe they have irate parents spitting nails about the carelessness of the playground staff or something.  I don't know, it just seemed weird.

I gather that what happened was that Lily was skipping across the pavement, and caught a toe.  She has ZERO reflexes, (like the doctor who tested them kept doing double takes when her knee wouldn't respond to the little hammer taps), and didn't try to catch herself, landed on her face, glasses jammed into her eyebrow, and the lens cut a gash into it.

She changed the bandage.  Jesus!  Okay, I'm no doctor, or nurse, or. . . whatever.  I'm not.  But in my medical opinion, she needed stitches.  Deep cut right above her right eyebrow.  Deep.  It shook me up a little.  I think I was expecting it not to be quite so deep.  Did I mention deep?  Remember when I said "whatever"?  Yeah, that was before I saw the cut.  I got it then.  I wouldn't have sent her back to class either.

Lily was a champ.  I gathered her up and we hopped in the car and drove home.  She was in good spirits.  Sometimes it's a bonus that she has the pain tolerance of Wolverine from the X-Men.  Her mother greeted her warmly, tears now long since dried up, Mama Bear mode initiated.

Emergency Rooms are ridiculous.  It's not all their fault, because people use them like a doctor's office.  My own pediatrician often sends Lily to the E.R. for stupid things like blood draws or tetanus shots, and while Children's Hospital is uniquely qualified to handle. . . children. . . sending someone to the E.R. for a 10 second blood draw amounts to killing an entire day in a waiting room while they process in the order in which the kiddos are received (or the severity, of course) sometimes resulting in an 8 hour visit for a 10-second draw.  Regardless of how you do the math there. . . stupid.

2:35 p.m.
Children's Emergency room has never failed to disappoint me not only in the duration they require my child to wait in order to receive care, but also in their lack of understanding of what the aforementioned spectral abbreviations mean for the child who is being asked to wait.  I was disappointed once more, but this time only because I expected to be disappointed, and they didn't disappoint me, so I was disappointed that I was wrong.  If you followed that reasoning, you don't need me to tell you that means Children's did a nice job.

"I want Misdowalds."

She occupied herself staring at the fish tank, 'reading' stories, or looking at the wall of bubbles.

There was only one real touch-and-go moment, when Lily pulled the band-aid off her head, exposing her cut.  I had to pin her hands and my wife had to get a nurse (who took way too long to make her way to me with a new bandage and gauze) while Lily, upset with being restrained, attempted to chew her way to freedom.  It all lasted perhaps a minute or three, tops, and there was no breaking of the skin (mine), so all things considered, we (I) made it through unscathed.

Here's something that bugged me:  She's got a deep cut on her forehead.  Do you know how many people wanted to take a look at that deep cut?  People removed her bandage and then replaced it with a new one.  I'm not a bacteriophobe, but it seems to me that maybe one person should look at it and then the next person who sees it, is seeing it because he/she is in the process of working on it.  The admitting nurse took it off to look at it.  The nurse that put the new bandage on it (because it was loose from the admitting nurse looking at it and Lily pulled it off) looked at it.  The E.R. resident looked at it.  The E.R. intern looked at it, and the doctor who finally stitched her up looked at it.  Why?  Why did those previous people look at it?  By the time we were in a room . . . at. . .

4:10 p.m.
. . . three people had already looked at it, and there were two more to go before the process would ultimately be completed.

I get that the hospital is a learning experience for the intern, so that makes sense.  I even get the admitting nurse to some extent, so she could direct us to the appropriate area of the E.R.  I don't know.  We answered a series of questions at one point enough times that my wife just rattled off a series of answers in anticipation when the next doctor/nurse would start in:  "She fell on the playground, her glasses cut into her forehead, no the glasses didn't break, no she hasn't eaten or had anything to drink since 12:10."

I added my own flavor these as they continued to grow more redundant:  "Did you talk at all to anyone who has already seen her?  I'm concerned that you don't know the answers to all these questions already.  You're aware she's autistic right?  You're aware she's had emergence issues when sedated, right?"  And so on.

Each person who learned that Lily had been sedated for surgery in the past and woke with "Emergence" issues vowed to look up in her records what the sedative du jour had been in order to avoid it this time, until the next person would arrive on the scene, also unaware of the issues.  That piece was disappointing.

Lily was more or less a good girl in the room.  We played music for her on our iPhones.  She seemed more or less uninterested in the iPad, although she did watch a little Dora on it once I connected to the wifi and pulled it up on Netflix.

They were waiting for the magical "four hours without any food or drink" to arrive before sedating her.  I hoped that meant they'd be getting her ready by 4:30 (since we'd been telling everyone 12:10 to 12:30 was her lunch), but it ended up being only about 30 minutes after that.  Lily was very hungry, and the hardest part was telling her she had to be patient.  She really didn't understand not being allowed to eat.

5:00 p.m.
The team assembled in her little room.  We gave her kisses, told her we'd be back, and they ushered us out of the room and into the waiting area again, to be summoned when they were done.  I sat on my seat, my wife sat on hers, and we produced smart phones so that we wouldn't be forced to speak to each other while we waited.

Okay, we did produce smart phones, but we also chatted, and she gave me money to go buy a bag of white cheddar popcorn from the snack vendor.  I felt guilty eating when Lily hadn't really eaten since breakfast (she only ate strawberries at lunch), but it's not like we were eating in front of her or anything.

5:35 p.m.
They gathered us back up and we returned to the room.  Lily was awake and upset, but honestly was doing pretty well all things considered.  She has a bit of a gag reflex, and she was stuffy to begin with, but with the crying she'd been doing, she threw up a bit and there were towels and wet wipes scattered across the bed.

She was connected to electrodes and the machine that goes "ping!" (or at least used to) and a lead was connected to her toe that glowed red and made it look like E.T.'s fingertip when he heals Elliot's booboo.  We stood on either side of her little bed, stroking her hair softly and telling her what a good girl she was and how brave, and eventually she fell back asleep and I retired to a comically squeaky chair that I was perpetually afraid would startle her awake.


6:22 p.m.

no response.

I attempted to engage my wife in a chat conversation from across the room.  I tweeted that bit of excitement.  She attempted to access my other daughter's electronic school records (apparently an update came while we were in the waiting room) and kept getting irritated with me because each new chat message would knock her out of the database.  I'm sure that would have been annoying.

6:47 p.m.
An hour after the procedure they brought us papers to sign and released us from the hospital.  My parents had picked up Emma from the daycare and were eating dinner with her.  I called them and they ordered food for us and were going to bring it home so we could eat.

We stopped at McDonald's on the way home and tried to get Lily, who was still plaintively croaking, "I want Misdowald's [sic]", to eat some of it with extremely limited success.  But she was coming off of a sedative that is known to cause nausea to some extent, so we weren't super surprised.

We finally got home sometime around 7, before my parents returned with Emma, and I made Lily's bed and we put her to sleep (until 1:30, when she decided to wake up for a couple hours).  Long day for the little spud.

After a fitful night's sleep, we kept her home.  My wife stayed with her and had her folks come over so she could get some work done, and catch a nap (since she was awake for the majority of the 1:30-3:30 festivities).  She was looking good, and back to her happy self.  Just another day-in-the-life.

I don't know if my expectations of emergency rooms are so low that four plus hours spent at the hospital for five stitches seems "good", or if it really is good, but saying it out loud makes me want to punch myself.  "I'm so happy it only took the E.R. four hours to stitch my ADHD daughter's head wound!"  Yeah, it sounds asinine.  But. . . I thought it seemed like they did what they could in light of the fact that they couldn't sedate her until 4:30 at the earliest.

Still, I'd like to hold off on future Emergency Room visits.  To echo the words of the intern as we checked out of the hospital, "It was nice meeting you Lily, I hope I don't have to see you again."  I laughed, but after we left I figured he probably heard someone say it.  And that person probably heard someone else say it, and so on, back to the dark ages of Emergency Room work.  Still. . . it's true.

A Tale of Two Conferences

It was the best of conferences, it was the worst of conferences.  Honestly, not to skip to the final chapter of this epic or anything, but really both conferences (the one for Emma the NT big sis, and Lily the autistic star of this blog show) were pretty good.  Well, better than pretty good.


This was Lily's first parent/teacher conference ever, really, and although we're P/T conference veterans, having lived through grade four under Emma, I admit I was sort of dreading Lily's conference for no easily fathomable reason.  When I let myself think about it, it was really no big deal.  We've met with the teachers (both Lily's Special Ed teacher and her Kindergarten Homeroom teacher) several times already through IEP meetings, wrap fade meetins, etc.  This conference was really not going to tell us much more than what we already knew, but it was not going to be your "traditional" conference, because Lily is not your "traditional" gal.


We had Emma's conference first, and we may as well have just copied and pasted past dialogues into the mouths of Emma's new teachers.  Doing great scholastically, getting along really well with just about everyone in the class, adjusting to the new school magnificently. . . oh but um. . . sometimes we can't really get her to shut up.  Emma chats.  She's very social and very friendly.  That said one high point did come out of the conference that's worthy of note.  I'll return to it shortly.  Lily's conference was the following day.


We really like Lily's teachers.  Mr. R. comes across as a very soft spoken, low key, sensitive male teacher.  He seems to be the consummate professional; diplomatic, accepting of suggestion, well spoken, and considered (I was trying to come up with the right word here. . . I was thinking "thoughtful" but that isn't what I mean, and I don't mean "considerate" though I'm sure he's that too; what I mean is, he considers.  He speaks slowly, returning to the start of his thought if he feels he's not communicating what he means effectively, beginning again to make his point clear and then seeking assurance that his audience understands before proceeding).  Mrs. I comes across just as professional and well-spoken but there's an edgy almost palpable passion for teaching kids with special needs and learning new ways to reach them that I am always stricken by when we talk to her.  Like the whole process of learning to teach and then applying it is her own personal heroine.  If we mention something we've "learned" (and it's in quotes because sometimes I spout off the apocryphal crap I glean from people in their blogs as if it's the gospel truth (and often it is)) she latches onto it with the hungry tenacity of a junkie in the throes of withdrawal (as learned from such films as "Trainspotting") immediately intense and interested and excited.  She always seems not just passingly interested in what our wrap services people have to teach, but eager to learn it, to absorb it, and to apply it to the kids under her care.

Scholar

So how could our conference possibly go wrong, right?  The short answer is, it didn't.  It went great.  It seems that they are in agreement about the number one challenge they face with our little Lily:  Figuring out just how much she knows.  We share this issue.  Sometimes Lily will utter the most appropriate sentence in perfect context (e.g., at my parents house we had dinner.  They have a sun room where we eat.  In the entryway between the kitchen and the sun room Lily stood, attempting to enter.  My father was standing just inside the entry watching her.  "Excuse me, sir," she said.) and other times we can't get her to say goodbye.  We recognize that (and here I drew on some of the autistic bloggers I follow) kids like Lily may not always be able to find their words or speak on command, and so it's difficult to tell whether she "gets it" or if it's echoic (is that a word?  Because I'm pretty sure that's a word).


Mr. R. indicated that she has integrated/adjusted in his classroom as well as any of the NT kids have.  She's sitting still for instruction, sometimes as much as 20 minutes at a time, focusing on him when he speaks, and answer to the best of her ability.  The good news is, the NT kids in her homeroom appear to like her and they meet her at the door when she comes from her special ed class and give her hugs and hold her hand and take her to her desk.


Academically, she sometimes responds appropriately to questions, sometimes she doesn't respond at all.  The example that blew Mr. R. away in class one day was:


"Lily, what's the first sound you hear in the word mug".


"Mug," she answered.


"Okay, but what's the first sound you hear in the word mug."


"Muh," she answered.


Really?  I would never have dreamed she'd have understood that concept, let alone given the right answer.  And again, does she know it?  Is she repeating it?  Can she be consistent with it?  We don't know, because if we try to duplicate the results at home, she's more likely to respond "I want Torious," (I want Victorious) than she is "muh".


She gets along well enough with her classmates that my wife and I have decided to let her have a couple of them over for her birthday party next month.  Three of the little girls in her homeroom appear to have a particular fondness for Lily.  One of them she knows from daycare, one of them is the daughter of one of the aides who works in Mrs. I's special ed classroom (and also was in daycare with Lily), and one is a girl we don't know, but Mr. R. said. . . "she is an exceptional human being."  Really?  At five she's an exceptional human being?  That's pretty high praise for a five year old, but okay.


Doubtless this birthday party will be the subject of future post(s) since I already have something I'm grappling with inside my heart.  Namely, all these kids are in her typical classroom.  None of them are special needs?  I reverse the tables and imagine the sadness associated with Lily's exclusion from a birthday invitation and it's making this hard for me to justify.  And yeah, it's a girl party, and there are no other special needs girls, but. . . I haven't even articulated this to my wife yet, but since she'll be in one room reading this tonight while I'm in the other room doing something else. .  maybe she'll text a response to me and we'll actually have a real life conversation in the same room.  I KID!!


Okay. . so this post is getting long, and I don't want to forget the noteworthy thing that happened at Emma's conference the day before.  I can't quote the scenario, and I may have one or two things not exactly on, but in talking to Emma's teachers, and then to Emma about it later, it appears to be this:


Emma, overheard a conversation of her peers mocking, questioning, exclaiming, SOMETHING about the behavior of one of the kids in the special ed classroom at HER school (which is 4 - 6, where Lily's is K-3).  She didn't know the child, but offered this:


"Maybe he has autism." (She says Aut-ism, almost like it's two words, as if she had a Texas accent.  It's one of those silly things that for some reason melts my heart)  "My little sister, Lily, has autism, and sometimes she gets really frustrated because she doesn't know how to express herself like other kids.  Maybe he's not a bad kid, maybe he just doesn't know how to explain, and it makes him frustrated."


The teachers were very impressed and surprised by this; at once giving some kid she'd never met the benefit of the doubt, showing great pride in her autistic little sister, and (to her ability) educating her friends about kids with differences.  I got something in my eye at that point. . . dust or something, and it started to tear up a bit.  Stupid contacts.


SO proud of her for that.
SO proud of Lily for how well she's adjusting to this new setting and new teachers.