Wednesday, October 26, 2011

Inspiration in Unexpected Places

I had decided I was giving Facebook another chance.  I wasn't using it, and honestly didn't really like it, but I was giving it another chance.

My first exposure to Facebook was forced, a vetting of a "new site" to see the pros and cons.  And although the initial week or so was filled with borderline amazing "ohmygodyou'restillalive?" moments, after about a month, all my 'friends' kept sending me painfully annoying shit from Farmville.  Why?  Why are you doing this, friends?  So after I deleted them, and blocked Farmville apps, and then made myself unsearchable so I could avoid feeling guilty about not accepting their repeat friend requests, it really limited whatever utility Facebook ever had in the first place.  So my profile collected dust.

I figured, okay, I'll try it again; I'll really get into it, comment the hell out of people I know, post stuff, look at their stupid lives and feign interest (teasing, of course). . . and for whatever reason I was looking for Autism charities and "liked" Autism Speaks' profile.  I have since read a lot of negative shit about Autism Speaks, but I didn't know any of that then, (not sure that would have mattered regardless) and I knew who they were, and Lily is on the spectrum and so I "liked" them but didn't realize that meant I would start immediately getting aggressively invasive updates and statuses and stuff from them, because I was still pretty green about how Facebook "worked".

One of the first statuses I got from them was a link to Lou's Blog.  Or, more precisely, a link to the video that Lou had posted on his blog "Fixing Autism".  And I'm like, "alright, I'll go look at this video".  So I did.  Well, about one minute in, I was crying like someone stole my last Cheeto and had to close the door of my office for the duration of the video and compose myself.  His daughter could have been my daughter.  It was no great stretch to put myself in his place and empathize totally and completely.  I forwarded it to my wife.

Admittedly I don't remember much about the slips of paper he presented showing stats or his arguments for why autism is under-researched/funded.  What I did remember were these words ". . . I can guarantee that she will be the best Bianca she can be", that I adapted to my own promise to Lily, "I will help you to be the best Lily you can be."  They sent a thrill up my spine when I saw them.  They communicated directly with my heart.  That was what I wanted for Lily.  I don't necessarily agree with everything Lou's video says (I don't disagree either, but I can't remember it all, and until I buy more tissues for my office I'm not watching it again), but I think it's safe to say that, without knowing what Lily will become, I will help her to become the best whatever that she can be.

Afterward, I followed Lou's video back to his blog.  And after I read his blog, I linked to a few others.  And then I started following them, and commenting them.  

I'd always blogged, but it had been a diary of sorts.  I still enjoyed the writing, and even enjoyed rereading what I'd written (on occasion) but I wasn't necessarily writing for others.  If a tree tells an amusing story in the forest and nobody's there to hear it, does it make a sound?  I don't know, but I had been blogging with nobody but me to read it.    So I thought. . . why not make a blog that I intend for people who are not me to read. . . then actually go out and find other like-minded bloggers and follow them and get little insights into what other parents with kids on the spectrum do?

I'm pretty guarded about my emotions in general, but I find writing cathartic, and when I'm doing it, I feel almost disconnected from the emotion of the words, an impassive narrator of the story instead of a character living it, shielded from that feeling of "laying it all out there" by the screen, or the page.  I can say things in writing that I'm uncomfortable saying face-to-face.

I've been a participant in Lily's meetings and therapies and feeding all her life.  I just haven't been an active participant.  Or at least as active as I needed to be.  My wife started to notice I was doing more with Lily.  I was trying to feed her more (often an extremely stressful and frustrating task).  I was more patient with her.  I was taking her to the grocery store and to the eye doctor and other things.  The more time I spent with her, the more time I wanted to spend with her.  I didn't seem to matter whether we were having good times or bad times. . . we were sharing time, and that's what mattered.  And I still lost my temper and patience, but I handled the bumps along the way with a little more grace, understanding, compassion and forgiveness.  My wife attributes the improvement to Lou's video.

Personally, I think I'd been making a concerted effort for months, and she just finally noticed, but . . . I'll give her the benefit of the doubt.

I still have very little use for Facebook.  I find that most of the time I spend commenting or interacting goes unnoticed and unrequited, and I'd probably delete it if it hadn't insinuated itself so ubiquitously across platforms and websites to the point where not having it means not having access to other things.  But it did introduce me to Lou's Blog. . . and Lou's Blog woke me up from my parental stupor and introduced me to a whole community of parents of autistic kids, some venting rage/sorrow, some injecting much-needed humor into stressful topics; a faceless support network that I probably didn't even know I needed.

I like to think I can handle all life brings me without needing anyone's help or comfort.  My carefully cultivated emotionless pseudo Vulcan exterior is more comfortable for me than the feeling of being beholden to anyone or of having to talk about "feelings" in the first place.  But the past has taught me that although maybe I can handle it, it's easier, it's better, it's more manageable and less stressful to have the help and support of friends who know what you're going through.  Even if some of those friends are faceless.

Tuesday, October 25, 2011

Big Timin' It - Deux

"Personal matters to attend to"
When Jillsmo approached the entire internet me personally about writing a blog posting for her wildly popular blog page, I was on the crapper honored.  I copied and pasted some piece of shit I had written as a journal entry sat down and put together something that I hoped would not cause her current fan base to abandon her on the spot would satisfy her that she'd made the right choice in bestowing the honor on me, a complete and total relative parent blog ignoramus newcomer.

Until Jillsmo returns from her 'personal matters', please read my blog posting on her website:  Yeah.  Good Times

Monday, October 24, 2011

Birthday Weekend

(some assembly required)
We celebrated my birthday, or as it became, my birthday weekend, or as I would prefer to refer to it, my magical birthday week this past week.  We had decided that an Ipad was in our future, and it became a question of 1)  Birthday gift for me?  or 2)  Christmas gift for the whole family?  

My thinking was as follows:  1)  if it's a Christmas present for us from us then we will get absolutely no help from the rest of the family (and it's a spendy proposition).  2)  if it's a gift for me, then I can decide who gets to use it and when, short circuiting the whole. . . "But it's the whole FAMILY'S present!" argument that Emma would no doubt employ to yoink it out from under me.

So, I was very excited to go to the Apple store and buy it.  It was a bit of an anticlimax though.  After dropping almost a thousand dollars on the thing, I didn't find the good people at the Apple store to be particularly helpful or accommodating.  They had a "personal setup" guy who was responsible for me and another guy.  The other guy was more clueless than I was, so he ended up spending the majority of his time helping him.  As a result, when I encountered problems I didn't really get the understanding and helpful ear that I'd expected from a store supposedly known for their customer service.  The problems I solved for myself snowballed into other problems and at one point the personal setup guy consulted another guy, and when neither knew the answer he said, "I don't really know what to do here," then turned back to the clueless guy, who was less inconvenient to help.

I eventually solved my own problem, but my personal setup guy took his lunch break.  So I packaged up my ipad. . . went behind the counter, got my own Apple store bag, slipped it inside and left.  

I was reminded of the South Park episode where it's Christmas, and all the kids in South Park are consumed with opening and playing with their presents and they show a cutaway of Jesus (who on South Park is an actual character (or used to be)) sitting all alone with a party hat on singing "Happy Birthday to Me" mournfully.  Stupid Apple store.  On top of that, they used my patch cord from my Ipad box (I've since learned this isn't SOP) and when I boxed everything up I forgot the patch cord in the stupid store.  

The iPad is cool, and I'm still setting it up, so I need like THE coolest autism apps for it before I introduce it to Lily.  Please leave your "THE COOLEST APP" suggestions in comments!  Emma and I played Angry Birds on it yesterday as I was organizing apps and setting up email addresses, but she hasn't been pining for it the way I thought she might.

That night my wife and I went out to eat at a gastropub (not to be confused with a gastropod, stupid spell-check).  She didn't know what a gastropub was, so I explained it, but I'm not sure I know what a gastropub is so I just winged it.  I sorta do, but when I imply I'm an authority on gastropubs it seems pompous, so I'm going to downplay it.  I like the place.  I went there with my Dad a few weeks ago, and wanted her to get to try it.  The plus side is, she really liked the food.  I did too. . . sorta.  They were out of a few things, but I decided pumpkin pierogies sounded sorta awesome and different.  She got steak. . . rare. . . as usual.  We got mussels for an appetizer and the sauce was fantastic!  I always want to drink what's left as soup, but I didn't, cuz I'm klassy.  

They brought out my wife's steak (cooked just the way she likes it, bleeding as if stabbed) and chose that moment to inform me that they were out of the pumpkin pierogies.  Now I'm very easy going when I dine out.  I'm mostly just excited to have someone cook and clean up and try new things.  But if you're out of something the time to inform them is not as you bring the other person her supper.  I stared blankly at the waiter (who seemed sort of "new") and said, "And you're telling me this now?"  

I eventually settled for skillet-seared scallops with bacon on honey-siracha polenta.  They were good, if somewhat sweet, and we were going to cap the evening with coffee. . . but they were out of it, so we settled for their version of a molten chocolate cake.  After a few minutes they stopped over to the table to inform us they were out of that as well.  So we said "FUCK YOU!!!"  "we'll take our check now".  

Although the owner, and both waiters came to the table to apologize for fucking up my dinner so spectacularly, when the final check came, there was no "hey, sorry about your dinner, we took one of your cocktails off the check" sort of gesture, and I admit I was thinking they would do that.  Not that I expect it, or even ask for it when it's not given (unless it's a total debacle) but it's still something that a "good" gastropub should do.  

I was mostly disappointed because I really wanted my wife to have a good experience there so I could convince her to go back, and it was my special magical birthday week dinner. . . and they botched it. . . so I tucked my birthday tail between my legs and we went home.

So, sort of a weird anticlimactic birthday celebration, but it remained "a night out with my wife".  And the food was good and the company was great, so all in all it was a win.

Sunday everyone came over and we opened a couple more presents, watched football, and ate chinese food with the whole family.  Lily 'helped' me open my present (which amounts to me handing her pieces of wrapping paper (she has no patience for unwrapping) and her ripping them to shreds and trying to put them in her mouth to the chorus of "NO LILY" coming from every corner of the room, which I think secretly made her laugh).  That helped pick up my gloomy Grinch attitude.  I called the Apple store and they told me to come in any time to pick up the cord.

Thursday, October 20, 2011

Extra Extra!!

Available in hardcopy or trade paperback
One of my biggest self-admitted faults (there are tons of bigger faults that I won't admit to) is my seeming inability to finish any project I start regardless of how trivial. For example: We have unfinished trim around our brand new installed patio doors. All I need to do is paint it. . . end of project. It’s been that way for 10 months. My dad installed can lights in my house. All I need to do is repaint the ceiling, because he white-primered it around the work, but didn’t paint it. It’s hard to tell unless you’re really looking, but I know it’s unfinished. He installed the can lights at least two years ago. We bought paint for my daughter’s room a couple months ago. We just haven’t started on it. In fact, the wallpaper border in her room that my wife started removing at least 8 months ago is still only half removed. These are the sorts of things that aren’t huge issues taken individually but point to a major flaw in the aggregate. Coffee is for closers. I want my damn coffee.

I was going to finish that damn social story project if it got me fired or killed me. I got back a tad early from my mandatory fire safety meeting and thought. . . okay, I’m tackling this fucking gosh darn unrippable project for Lily that I keep putting off. . . and it just. Kept. Eluding me.

So mostly I was freaked out because I was doing it at work, and it's not like you can hide a “comic book” that's double-sided by turning it over to the blank side. So I was very conscious of printing it out quickly, scooping it up and stowing it safely in my laptop bag. None of which happened.

The first time I printed it upside down (page one right side up, page two upside down), because. .. the unrippable paper is so heavy you have to enter a special setting on the laser copier in order for it not to jam every time, and entering the type of paper it is precludes the use of double-sided copies. I guess the copy machine understood that it would jam itself if it tried.

The second time, I didn't realize it printed last to first. So, I printed all the evens, 2,4,6,8 then flipped them over, and printed out 1,3,5,7 only instead of 1-2, 3-4, 5-6, 7-8. . . it was 7-2, 5-4, 3-6, 1-8. MAGICAL!!!!

I didn't actually even figure out what the hell went wrong until I said eff (the word was not actually “eff”) this and printed the evens, then did four separate print jobs for the odds and fed them one at a time through the stupid copy machine.

I didn’t trust the copy machine not to jam, so I had an access code added to the print jobs that required me to enter a password everytime I printed so that I could manually feed the papers without worrying abouta jam.

Bear in mind this was taking like an hour where I was just standing at the copy machine looking, for all intents and purposes, as if I was photocopying comic books while on the company nickel.

The Iron Maiden
So finally I finished it. But I had to bind it. I tried binding the laminated version our BSC printed out for us last week with my wife's work friend's binding machine before I left for work this morning and almost broke it because all I had was a laminated version and it was too much for the thing to cut through. I heard a loud crunch, and thought, “Great! This is why we can’t have (our friends’) nice things.” But it still worked, so we'll pretend like nothing happened. I ran out of time before work this morning,so I decided I would just use my company's industrial strength version.

I could not, with my Bachelor of Science Degree in Chemical Engineering, for the life of me figure out how to line up the pages and the binding mechanism such that it would spiral bind when I yanked the crank. I finally had to enlist the company's technical writer (read: copy clerk/part-time waitress) to help me figure it out.

And now. . . now I'm done.

I’m a GENIUS!!!*

*well. . . at least I finished the project.

Tuesday, October 18, 2011


So guess what?? I finally got around to printing out the awesome comic book-style social story that I made for in an effort to aid her in her transition from home to daycare to school.

The genius of this idea, if you'll recall, is that though Lily is a paper-ripper. . . I, Jim, have outfoxed her with unrippable paper!! Check and Mate! Step one, if you'll also recall (if you didn't read it, you should. I read YOUR crappy blog), was printing the story out on regular paper to see how she'd do, and she did great. Step two was to print it out on unrippable paper, bind it, and give it to her. My wife borrowed a "binding machine" from someone at work for the project.

"Go at it, Lil'," I'd say, than laugh and point at her and say, "In your FACE!!! You can't rip this paper, Lily! It's unrippable!!!" then laugh maniacally.

Only I never got a chance to laugh in her face because. . . see. . . well. . . it didn't really work. I printed it out and the ink was still wet, and it smeared when I pulled it off the tray. Alarm bells started to sound. Because, as previously stated in the above-linked blog posting, what makes the unrippable paper unrippable is an invisible plastic coating that, it turns out, is pretty much impermeable. . . meaning the ink doesn't absorb into the paper. See?? Oh. . . no? Meaning, it will NEVER EVER DRY.

Yeah, okay, genius, give your autistic daughter a book full of wet ink and see who points at who and says "in your FACE" because I'm pretty sure there is no "win" for me in this particular game, and lots of potential for "loss". And also. . . who does that to their daughter??? That just seems mean.

I printed out another page and let it sit and dry overnight. Maybe the ink would dry, I postulated. The next morning I picked it up. The image had sort of smudged together and although it was still nearly legible. . . it was like the pictures of the chalk drawings from Mary Poppins that Dick Van Dyke draws on the sidewalk after the rain comes. Don't ask me why I remember that. On top of that. . . they still smudged.

I have one last change, and that is to attempt to print it out on the company laser printer during lunch break. By the time I finish this particular work of genius, she'll be in first grade. Go PARENTING!

Monday, October 17, 2011

Credit Where Credit is Due

When I got this in the mail, I read it as. . . "My reason for saving:  just started Kindergarten."  And I thought. . . what the hell?  Since when is AMEX marketing to interest rate savvy kindergarteners.  What are these kids saving up for?  This was followed shortly thereafter, tongue-in-figurative-cheek by, "and since when do kindergarteners need an Amex card?"  

Mostly, Lily's expenses are taken care of by us, but if she needs to buy something, like a doggie or a pony or something, surely her piggie bank reserves are sufficient.  All of this went through my head in a split second before I reread the caption.  

Ohhhh, "my reason for saving just started kindergarten!"  LILY. . . they're saying Lily is my reason for saving, and she just started kindergarten.  Hahaha, I chuckled to myself warmly and then turned the paper over to see the addressee.  

I guess I was right the first time. . .

Friday, October 14, 2011

2nd Thoughts?

Last night, while I watched Lily, my wife took Emma to baton practice.  About 10 minutes after she left I got a text from her:

Wife:  "Emma started crying about leaving behind Lily 4 the wedding!"

I wrote back "awww" with a little sad face emoticon, because I wasn't really sure how to better support the situation from home.

When they got home I was just finishing drying Lily's hair after her bath and getting ready to put her to bed.  I asked Emma if she was okay because she looked like she was on the verge of crying, her big blue eyes brimming with (as yet) un-shed tears.  The second we started to talk about Lily staying home for the wedding, the tears welled up and started to fall.

And Lily said, "Sisser crying" and hovered comfortingly, until I scooped Emma up and took her to her room. 

She explained to me that what was making her sad was not so much that Lily had to stay behind, but that four days is a really long time for her not to get to see Lily.  She's going to miss her.  And as she was crying and I was hugging her, I damn near caved and said. . . "oooookay, we'll take her with us."  I'm such a sucker for a girl in tears.

We knew Emma would be sad about not taking Lily with us, but we assumed (or I did) that it would be because Lily was missing out on all the good stuff (at least from Emma's perspective).  I was all set to argue those feelings away by reminding her how much fun Lily has with her grandparents and how Lily would get to have three sleepovers in a row at their house, etc.  But I wasn't prepared for her to just not want to be away from her.  Although I should have been.

What I did argue was that because Lily wasn't going with us, maybe we could go to the wedding a day later, since we wouldn't need to break the trip into two legs.  It helped marginally.  Just knowing it would be one less day away from her little sister helped a little.

My wife went the extra step of sending an email to Emma's teacher and giving her a heads up that Emma might be a little emotional and could use some support from the school counselor if she thought it would help.  She does have different issues to deal with than most 9 year old kids do, having a kids sister on the spectrum, and while the guilt and anxiety I feel over leaving Lily behind while "the family" goes off to Wisconsin seems pretty manageable, I'm not 9.  And I'm sure it's harder for her.

Emma and I had a talk not long ago about how she sometimes felt sad that she doesn't really get to play with Lily like she thought she would when she first found out that she was going to have a little sister.  I think sometimes I forget that Emma had her expectation of what having a little sister would be like too.  And this isn't precisely what she thought it would be.  I think having that expectation go unrealized has made her, if anything, even more protective of Lily; more of a responsible big sister looking after her little sister.

Today we (my wife) got a call from the counselor.  Emma had a little breakdown at lunch time and her home room teacher had taken her to talk.  I'm glad.  I hope it helps her feel better.  I know right now it's just making me feel worse.

But. . . there's a lot of love there.  :)

Thursday, October 13, 2011

Big Timin' It

Today I'm a guest poster.  You know you've gone big time when you guest post.  Because I totally was approached and aggressively recruited for this blog based on my amazing new writings to date which were unlike anything the host of Living Life With a Side of Autism had EVER SEEN!!! begged her to write the post.

I'm sorta new around these parts.  I've blogged for years, but started to blog more specifically about my little spud, Lily and her autism after watching Lou's Blog Video about "fixing" autism.  I'd link it, but I'll save that for another day.  Today, I'm only whoring out Living Life With a Side of Autism, because she graciously allowed me to participate in her "Girls Have Autism Too" guest post series.

Thanks, Jen

Wednesday, October 12, 2011


Like many autistic kids with ADHD, Lily cannot be captured with traditional film speeds.
Fresh from our experiences overloading Lily's senses with Wobot the previous morning, we hid him, and resolved to present him to her only in exchange for a good breakfast "performance".  But Wobot isn't the only animatronic Halloween decoration in the house, so Lily just moved on to her next obsession. . . Trick-or-Tree, which sings a little modification of the Addam's Family theme song with a trick-or-treating theme.  It's a tree that sings, with owls living in it that hoot and bob.  At this point, it's not a huge stretch to just say, read "Wobot" and insert "Trick-or-Tree" wherever you see the word Wobot. 

Emma holds Wobot so Lily can get a pic with Trick-or-Tree
It went off quite a bit more nicely than that, but it's not a huge stretch.  She ate her happy toast, but while I fed her and she continued pushing Trick-or-Tree's blister switch (he's quite a bit easier to operate than Wobot) I couldn't get any other stuff done.  But she ate, and that's the majority of our morning stress, so it helped a lot.  Also, while it seemed to me that my wife essentially just skipped the morning stress by taking so long to get ready that everyone had eaten by the time she sat at the table (she was in fact making the bed, picking up laundry, and checking the kids' schedules for the day. . . ), she wasn't around to get overloaded and yell at me.  Not that she would have.  It was a much nicer morning.

At the end of breakfast, I got her Wobot.  I don't think it takes a technical degree or a huge background in math to understand that if one animatronic Halloween decoration is awesome, then two animatronic Halloween decorations must be twice as awesome. 

whatya mean kids don't find undead moaning dogs charming?
One additional happy discovery is that Mummy Dog, yet another animatronic Halloween decoration (and a mildly unsettling one at that) holds no novelty for Lily.  She treats it as she would treat any dog, saying, "woof woof" when it moans and howls, and kicking it.  (I don't know why she tries to kick all dogs.  And not in a mean way. . . more like she thinks it's fun to play by kicking.)

Tuesday, October 11, 2011


Wobot in his natural habitat
Emma has been excited to start getting our house decorated for Halloween.  Last night while my wife was putting Lily to bed, she and I began the set up. . . orange lights on a faux wrought iron fence, skull heads, jack o’ lantern lamps, and all the trimmings.  Anyway, one of the decorations is a little animatronic skeleton that does a little dance to the tune of "Low" by Flo Rida.  Last year it scared the shit out of Lily.  Or at minimum she was not overly fond of it.  She called it "wobot" as in robot.  She didn't recognize it as a skeleton, which isn't a big deal, but probably is for the best.

So we set all the decorations up last night, and wobot was sitting next to the fireplace.  He's about 8" tall.  It was dark in the family room when we walked down the stairs.  Despite his inconspicuous placement, the first thing Lily did this morning was walk right over and start talking about making wobot dance.  "I want wobot dance!"

So I made wobot dance, depressing a somewhat hidden blister switch on his sleeve, and placed it on the table.  Next thing I know she was carting the stupid thing around with her everywhere, a  far cry from last year's "I no wike wobot!", and I'm trying to get breakfast ready, but every 30 seconds I had to stop because if I didn't, Lily would just repeat excitedly, "I want make wobot dance!" over and over times forever.

A few minutes later her big sister Emma came down stairs and since her breakfast wasn’t ready, I pressed her into ‘pressing’ duty.  She would ask Lily if she wanted wobot to sing and then would periodically depress the blister so that he could continue to sing about apple bottom jeans and the boots with the fur, etc.  Which is all pretty adorable. . .

. . . until it was time for breakfast, because Lily didn't want no damn breakfast, she wanted wobot.  And the answer to each of the following questions:  1)  “Lily, do you want a pop tart for breakfast?”, 2)  “Lily, do you want a strudel for breakfast?”, and 3) “Lily, do you want happy toast for breakfast?” was, “I want wobot.”

Finally to get us to shut up about breakfast she agreed to "pink pop tart," which we dutifully provided her on a pink plastic plate.  She put perhaps a quarter of a thimble's worth of poptart in her mouth before she hopped from her chair and said, "I'm all done now, I want wobot."

We stayed firm, of course, and said, “First pop tart, then wobot!” (only we pronounced it "robot") and she continued taking tiny mincing bites and popping up, frantically searching for wobot, until I finally negotiated one big bite of the damn pop tart in exchange for the wobot.  This was the first step down the slippery slope that hindsight almost immediately recognized, because as she took a bite, and I put wobot on the table, and he commenced to get his groove on. . . and she announced, "I all done pop tart," having gotten what she wanted all along, tipped the poptart off her pink plastic plate and stood up.

 “No, Lily, sit down,” said my wife.  Then, “Keep the pop tart on the plate.” 

Lily sat, for perhaps a second, wobot clutched in her hands while he gyrated, and said again, “I all done pop tart,” again upending the plate, while my wife repeated "No, Lily, leave your plate alone". . . lather, rinse, repeat, forever, while Emma took the opportunity to tell us all a story about a dream she had, as wobot continued to sing at full volume about how the whole club was looking at herrrrrr.  And it all became a little too much for at least fifty percent of the people in the room . . . my wife and Lily went into sensory overload.

Wobot was angrily removed from the vicinity much to Lily’s chagrin.  Words became clipped and terse.  All parties became tense and the morning degenerated to angry sarcasms muttered stiffly under breath and great forced politenesses. 

Eventually we got Lily to eat a few grapes, but she continued her domination of us, fooling us into believing she actually wanted happy toast*, which I made her in an effort to get something in her system.  She ate about as much of it as she had of the pop tart and then it was time to go to day care.  Not a spectacular effort on our parts.

So my wife lost it this morning, but you could tell this story again tomorrow and replace “she” with “he”, and neither of us would bat an eye, since the person who loses it seems to depend on nothing so much as what way the wind is blowing, which is why we’re such a good team, since we have yet to experience a day where we both simultaneously flip out.  I think when I see her lose it, it scares me and I somehow immediately develop superhuman patience, and the same seems to go for her.

I didn’t realize how stimulated Lily would be by wobot.  She was completely out of control (which is ironic since she had us leaping to do her bidding in an attempt to get food in her).  After the dust settled and the kids were safely at daycare and I drove to work, I called my wife to give her the daily morning drop-off update.  We talked about what we had done wrong and how her eating is getting a little out of our control again, and we needed to redouble our efforts. 

Tomorrow we’re hiding wobot until after breakfast.

Monday, October 10, 2011

Wedding Trip Decisions

We go to the beach nearly every year.  It's about a 15 hour trip, give or take, and to minimize the stress, we break it into two nights.  Because Lily isn't completely potty trained, and because 90% of her accidents seem to happen in the presence of the soothing vibration of the tires against the pavement, we make lots of stops.  In the case of the trip to the beach, many of these stops involve high-traffic bathroom breaks where lines of women snake through busy McDonalds' and the steady whoosh of the jet-dri hand blower scares the crap out of Lily.  It can be stressful on a number of fronts. 

Ding!  Time to Potty!
First, while we're stopping sometimes as often as every hour to every hour and a half at most, it's high-traffic and long waits and we're already irritated as hell by our fellow man.  Second, by the time we get to the stop there's a sense that Lily is a ticking time bomb waiting to go off, from a potty accident standpoint.  Third, Lily doesn't necessarily go on command.  Often she pops right up and says, "I all done."  When you attempt to disagree, violence ensues.  And knowing that the next stop is another hour away, it's a fight that we really really want to win.  Nothing trips the stress trigger quicker than stopping to potty, getting "I all done" and following it up with an accident in the car seat 5 minutes back into the trip.  Finally, by the end of the first leg of the trip, Lily is almost definitely asleep.  And once she wakes up, she's awake for the night.  So if we're unable to get into the hotel and then put Lily to sleep, Lily will scream bloody murder for the remainder of the night, waking everyone in the hotel and keeping us awake until her body completely shuts down at about four in the morning and she sleeps for a couple hours prior to us getting back on the road again.

The payoff, of course, is that a full week at the beach awaits us and we (Lily included) love the ocean and the beach.  So we do it every year.  We balance the bad against the good, and the good wins, and we take the trip.

The point of all that preamble is that my wife's sister is getting married in Wisconsin at the end of this month and it's a 15 hour drive to get there.  We've reached the decision that we are going to leave Lily with my folks and take only Emma.  This is a sad decision for all of us, and wasn't arrived at lightly.  

The preamble to my defensive posturing is that we're both feeling extremely guilty about the decision.  

We already knew the negative side of the balance sheet, so when we considered keeping Lily at home, we needed to consider what the payoff was at the end of the trip, and whether the benefits outweighed the costs.

First, Emma and Lily would be the only two kids there.  My sister-in-law and her fiance were gracious enough to include our kiddos in what is, essentially, an adults-only affair.  And it's not that Lily would have had all sorts of kids to play with or anything that's at issue here, it's more that Emma and Lily were already going to have special consideration because it wasn't really a ceremony designed to accomodate young-uns.  And while Emma wouldn't miss it for the world, Lily really has no idea what it is she's even going to be missing.

Second, the payoff end result is a visit to northern Wisconsin in late October.  I'm positive I'll be charmed by the rustic setting and lake-side scenery, but again, Lily not so much.

Third, the ceremony itself, the focal point of this trip, will offer her zippo.  The church (a charming historic stave church that I personally will be really interested in seeing, but. . . you know. . . Lily not so much) isn't heated (see above regarding "late October in northern Wisconsin") and is very small, possibly standing room only for a marriage officiated by. . . (drumroll).

. . . Fourth, her mother.  My wife is going to be the minister at the wedding.  As if a cold autistic 5 year old standing in a church throughout a ceremony where she may (or may not) fervently dislike the musical selection and offer her own perseverative and charming, "I no like dat music annnnnymore!" loudly and repeatedly isn't enough, her mother will be standing a few paces away attempting to focus on providing a memorable (for all the right reasons) ceremony for her sister.  It seems in Wisconsin you can get your . . . ministers. . . certificawhatsis by mailing away to a sponsor, and my wife's sister honored her by requesting that she perform the ceremony.  So she's doing it.  But that's just another distraction for Lily, and perhaps worse, a distraction for the couple getting married.  And believe me, they get Lily and she's totally invited and welcome and all that. . . but.

Fifth, the fallback option of taking Lily there, and then staying in the room with her seems just as silly.  The point of the trip is the wedding, why drag her up there if she's not going?

Me.  Stop laughing.  It's totally me.
So my wife's sister was extremely supportive of the decision, which helped my wife's acceptance of it, and my parents very generously agreed to stay behind and watch Lily for the long weekend.  And while a big part of me feels a heavy burden of stress lifted, a nearly equally heavy burden of guilt descended at the same time.  Like when Indiana Jones places that bag of sand on the booby trap and snatches away the gold idol. . . I'm eyeballing the decision and hoping that a giant boulder doesn't roll down on top of me. 

And while I feel like NOT torturing Lily for a a weekend and making her and us miserable is still the right decision, it hurts not to have the family together; like we're betraying Lily by going off to do fun family stuff and making her stay behind because it's inconvenient.

So the benefits for Lily are 1)  Bonding time with my parents, 2)  not being tortured for 30 hours worth of driving, 3)  Not having to stand in a cold (but charming) stave church for an hour, and 4)  Getting to sleep in her own bed (or what may as well amount to her own bed).

I think we're doing the right thing.  I'm just waiting for the boulder.

Friday, October 7, 2011

So You Want to Give Money to Autism. . .

I have money burning a hole in my pocket (ICHIRO, Getty Images)
I do.  I really do.  Every year my company (through United Way) encourages my fellow employees to give.  While United Way is my company's charity of choice, the pledge process allows you to select any charity you find worthy.  Excellent!  So every year I give.  I'll be honest, before I knew I had a child on the spectrum I didn't give money to Austism organizations.  I've sorta just flitted from charity to charity depending upon the cause du jour.  For example:  After 9/11, I gave to the Red Cross.  After Katrina, I gave to flood relief.  Before that I gave to the National Hemophilia Foundation (a relative has hemophilia).  Now I'm giving to autism.  

But. . . I really know nothing about the charities in question.  Autism Speaks?  ABOARD?  A local non-profit school for autistic children?  It's pretty confusing stuff, and I really haven't been in a position to utilize a lot of any of their services.  So. . . despite not really having the kind of readership that will allow me to get any kind of meaningful consensus about what folks in the community feel are the 'worthy' austism charities, I'm asking:  Who do I give my millions hundreds to?  

If you read this blog, and have a favorite, please name them, and let me know why.  I really am not wedded to any (as I said) and your input may* actually impact my decision.  And if nobody responds I'll almost certainly waste it on hookers and blow gadgets and lunches out with colleagues.

*author reserves the right to blow off any opinions and go with his gut

Thursday, October 6, 2011

Potty Training With Edgar Allen Poe
I always hate myself when I write blogs in other software then post them and try to adjust all the formatting problems that crop up as a result. So. . . I just won't fix any of them.
I have recently read several potty training blogs.  The following account represents my experience with our first attempt at potty training Lily.  Possibly it is dramatized, but I hold that it is mostly factual and can be instructive to the extent that you may want to NOT do it this way having read the account.  I may revisit the process since it seems like such a sticky one for parents of autistic children, and this was only the first concerted effort that didn’t consist of the. . . “she’ll go when she’s ready” formula that our pediatrician at the time “prescribed”.  We have since tried others. . . 
It was a "vacation" week for me. The nuns that ran Lily’s daycare apparently needed a week of rest from the supervision of our angels every year around that time, and my wife was out of vacation time. Actually the staff had already gotten their vacation, but they also scheduled the facility to be painted and remodeled, fixed and refinished that week every year so that the daycare sparkled and Jesus smiled upon it.
A week off with the kids actually could be considered enjoyable, so we attempted to do what we could in order to make certain that it was not. Because you cannot be a martyr without having suffered.  And we loooooove to play martyr.  We decided to attempt to hardcore potty train little Lily while I was off with the kids.
There are many ways to potty train kids. . . my preferred method would be "wait until they just sorta pick it up" because it requires no effort.  This method almost never fails, but takes a lot longer.  But Lily is not a no-effort child, and her a lot longer is longer than a lot of other lot longers. With other learning priorities to deal with, potty training was on the low end of her therapeutic services, so it seemed likely to go unaddressed unless we prioritized it.
The method we ended up going with was this: underpants underneath her pull-ups, with an egg timer to get her on the potty frequently and regularly. Ding! Time to potty. Ding! Time to potty.  Simple.
The plan’s details were worked up by Lily’s BSC and went something like this. . .  At 30 minute intervals, you take your child to the potty. If she's dry and she goes to the bathroom. . . you bump the interval to 45 minutes. If she's not, you change her and continue as before. You're "done" when she's dry at 2 hour intervals, essentially, though there's more to it than that, since you really need them to realize for themselves that they need to go and to prompt you to put them on the potty, or better still, they visit the potty by themselves and leave you to your "Stories".
Armed with my strawberry-shaped egg timer, I set the 30 minute interval and waited. Ding! Time to potty. She sat but wasn't happy about it. Was she dry, was she wet? I don't remember. . . that was sooooo long ago. I got her off the potty and went back to my day, making breakfasts and/or cleaning dishes. Retrieving stuffed animals or fixing the internet for my older daughter, Emma. Ding! Time to potty. Dry/wet. . . again. . . so long ago, but I think we were 0 for 2. . . two potty attempts, two pairs of underpants. . . we bought seven, all of which were slightly too big because it was sort of last minute, and the smallest we could find were "4" and she needed "3". We had a helper (TSS) for the morning, someone to assist with her day-to-day activities in an effort to get her back on track. This proved to be uncomfortable for most of the day, as I essentially still did all the same shit I usually do with the kids, but had someone there to "help" who felt equally uncomfortable being there, because he didn't really know me, but had to be there all morning essentially doing nothing but watching me.
Ding! Time to potty. Day 1 met with mixed success. Sometimes dry, sometimes, wet. We passed the day to the rhythm of the dinging strawberry. The dings seemed to come more and more quickly the longer the day dragged on. Her helper left around noon, and I fed her and put her to bed in a pull-up (not underpants) for her afternoon nap (cause I'm not a fucking (excuse my French) moron) and spent a little quality time with the older child.
Lily didn't sleep though. . . so an hour later I retrieved her from "quiet time" and marked time thereafter:
"To the tintinnabulation that so musically wells
From the bells, bells, bells, bells,
Bells, bells, bells -
From the jingling and the tinkling of the bells."
And so on. The day rolled on, eventually rolling over me, but it was done. My wife returned to relieve me. The process itself was predicted to provide results in one to two weeks, but the daycare would never be able to handle the every 30 minute requirement. . . so we prayed that it would "take" in one week. Since that's all we had.
The following day I returned to work. My wife had just the one day left to take off and it was Tuesday. She resumed the 30 minute ritual with mixed success. Dry underwear in the morning, wet and dry in the afternoon, with mixed results on the potty. It was a weather forecast, and just as accurate. Mixed showers in the morning with areas of wetness in the afternoon, clearing by bedtime. But still we soldiered on.
I returned for duty. Heh. I said duty. I returned for duty on Wednesday. Up and on the potty. . . dry all morning. ALL morning. . . but she also didn't go on the potty. . . so DING! Time to potty, every thirty minutes, with no relief until nap-time, when her helper left and I put her down for her nap.  It's amazing how frequently thirty minutes arrives when you have to fight your daughter to stay on a toilet seat and "try to go potty". Ahh the amusement you'd have shared at my expense as I dramatized "going poopy" or "give it a push, Lily", complete with grunting sounds, pleading for success. Mind you this is only day three of the one to two week program.
She stayed dry all morning, was slightly wet after nap, but "Huzzah!" went poopy and pee in the afternoon following her nap. You GO girl. At this point my shoulders were hunched. I was scuffing across the floor, attempting to clean, and split 'fun time' with the girls, while maintaining the routine.  Yet still I bravely marched on, the footsteps of my (and her) progress measured by the banshee's wail of the revolving strawberry,
"By the sinking or the swelling in the anger of the bells -
Of the bells -
Of the bells, bells, bells, bells,
Bells, bells, bells -
In the clamor and the clanging of the bells! "
Oh how its alarm jangled my nerves and brain by 5 o'clock when relief arrived. . . though not relief in the form of the potty.
The day my brain broke was Thursday. Up a little late by her standards her pull-up was damp, and she didn't have to go to the bathroom when I propped her up on the potty seat, coaxing her and cajoling her to keep her still and balanced on it. As the days went by each event got longer, an attempt to get her to use the potty, not just sit on it. Rewards were offered for success; treats,  and praise were lavished. The process would sometimes take 10 to 15 minutes. . . every thirty minutes.
"To the sobbing of the bells: -
Keeping time, time, time,
As he knells, knells, knells, ..."
I wanted to throw that fucking (yeah, that’s right, I’m not striking out the eff word THIS time) egg timer through the window. I hated it so much. But I was strong. . . a grownup for godsake. Ding! Time to potty! Thirty minutes later she was wet again but didn't go on the potty. Ding! Time to potty! Thirty minutes later wet yet again and still didn't go on the potty.
"To the tolling of the bells -
Of the bells, bells, bells, bells,
Bells, bells, bells, -
To the moaning and the groaning of the bells. "
At 10:30 that morning I had just finished a 15 minute attempt. She stayed there, not completely unhappily, as I coaxed her and praised her and offered stuffed animals and books. She'd not pooped all morning, and that was somewhat out of the ordinary. So she stayed a little longer, but did not go. I cleaned her off and helped her wash her hands, changing her underpants for the fourth or fifth time (periodic batch laundry runs are required when you only have seven pairs of underpants with which to work. . . and we were down to six, since on Day 2 there'd been an incident; an incident in which my wife completely lost her temper and I had to counsel her to "pull yourself together" which is almost always the wrong thing to say to someone who has lost his/her temper and definitely was in this particular instance. . . it was sort of ironic in hindsight). Within a few minutes of my having reset the Demon Egg Timer of Fleet Street she had pooped in her pants.
The success of this method pins its hopes on the tolerance of the parents in question for mess. . . and while my tolerance had increased over the last seven years (at that time) of parenting. . . it is not limitless. The method itself almost guarantees that at some point the child in question will poop in his/her britches and require some pretty significant cleanup. Lily, however, as part of her unique condition, does not sit still. Her muscles are always firing. . . changing her is a chore, her little feet constantly kicking you in the stomach (or worse), flailing about. . . or bouncing off the floor. Her hands immediately exploring any newly exposed territory, her body twisting to find a direction of escape. . .
I spent a solid five minutes just trying to think about how to change her. What made it worse was that her "helper" was there watching. She couldn't really HELP me because, short of pinning her arms to the floor, there was nothing I could have her do for me. The best way to do it, I decided, was to DO it! So I did it. And much squirming and fighting ensued.
There is no 'tidy' way to change poopy underpants short of cutting them off like a trauma nurse in a particularly messy E.R. situation. I considered this but discarded it. I "got down to it". Hands immediately began exploring but were blocked by my diaper changing kung fu. Legs countered with a kick to my chest. My hand grabbed the leg, but released it to block the questing hands again. The trunk twisted, escape was inevitable, but again, her Kung Fu was no match for my own. The other foot kicked free and the mess began. "Shit!" I said, probably not as quietly as I should have. Shit, indeed. On the carpet, on my hands, on her hands, on her legs. . . everywhere. I sent the "helper" to get wet paper towel as extricated the underpants from my daughters anatomy, tucking them inside the pull-up. . . cleaning shit speckled carpet with wet wipes. . . cleaning legs with one wipe as questing hands resoiled themselves to the cheerful giggling of my daughter. Wipe followed wipe, each newly cleaned body part soiling a new wipe that added to the stack of wadded up wipes in the pull-up. Still she kicked and twisted. Eventually she was clean. . . in a pull-up. . . as I tackled the carpet. . . then myself. Shorts. . . hands. . . The wipes stacked higher and higher until at last it was over. But my brain was broken.
Fuck you, egg timer. Fuck you, 30 minute changing schedule.
"I think we're pretty much done with the timer for a while," I told her helper calmly (think in terms of Hannibal Lector calm. . . the sort of calm that hides psychotic impulses beneath a cultured and charming patina). "My brain is broken right now and I'm going to need a little down time to fix it." Indeed immediately following this edict the stress began fading slowly away, sloughing off my psyche like a shed skin from a serpent. The helper left, and I fed my daughter an hour or so later, putting her on the potty when I damn well felt like it, just prior to her nap. No more underpants. No more ringing menace. Just, get her on the potty.
We scrapped the intensive potty training that night over a discussion with beer. Too much, too soon (potty training, not beer), expectations too high. . . plus I had the broken brain thingy to deal with. Friday was a much better day with my girls. I got to enjoy them. And yeah, I got her on the potty, but not to the alarm bell, just 'as needed'.
I know this. . . if my wife had told me to "get a hold of yourself" during the brain breaking. . . it's possible I'd have left her that instant. Packed my bags and left the house. I'd have been back, but only after a many, many gallons of alcohol.
The egg timer was still on my kitchen counter, but it sat at zero. No longer ticking like a shit-filled time bomb.  I put it in one of the cabinets a day or two later, and it will collect dust there until someone else moves it. . . I don't trust myself not to throw it through the window anymore.
That was two years ago.  A moderately more successful potty training effort occurred a year later that was championed by my wife.  Although it got us nearly 95% of the way there at the time, medication almost entirely eradicated it a month or so later, though why this was so, we aren’t certain.
Currently Lily is at about 90%.  We try to get her on the potty once every hour and a half or so, and through four weeks of school she’s had only two accidents (there have been more accidents, but our biggest worry has always been those that occurred at school).  We may tackle the issue again at some point in the future. . . but not with an egg timer.

Many thanks to Edgar Allen Poe for writing a fantastic poem about intensive potty training methods utilizing egg timers.

Wednesday, October 5, 2011

On Being Prepared

My wife had a great idea.  After dozens of visits with disciplines and disciplines of doctors, she told me it was her intention to write down Lily's medical history in narrative form so that we'd have the information for the next few dozen doctors, so we wouldn't have to regurgitate it/reinvent it.  I thought, "great idea!"  She wrote it out over the course of several days, calling me periodically at work with questions like, "when Dr. X saw Lily, was that before or after we went on vacation to Nagshead that Summer?" , or "How old was Lily when the daycare called us and the ambulance had to be called", and other such adventures.

It was a good exercise, and surprised us both with the amount of information not only that she had collected, but also that we had forgotten over the course of her writing it.  In the 'end', she came up with a document that was five single-spaced pages long and covered a myriad of topics, blood sugar, allergies, genetics, etc.  There was all kinds of information in it. 

Alright, doc, where do you want this?

Not that this is a good analogy, but my parents bought the audio books for the entire Harry Potter series.  They would loan it to us every time a new book or movie came out, and we would listen to the entire series on our work commutes before going to the movie, or reading the new book.  We found that every time we listened to the series again we had forgotten huge chunks of it every time.  Little things here and there sometimes. . . but also things that were important to the plot of the story.  And that was just six months to a year at a time (depending on whether it was a book or a movie, or both). 

This was the first five years of the kiddo's life.  And, as she would be in mid-story regarding something in Lily's history, it would tickle our memories about something else, or perhaps fail to tickle them, as our memories are getting worse and worse the older we get.  Or mine is.  Hers still seems fine.

So we finally had an opportunity to put the new narrative to good use.  We were looking at a new local doctor and wanted him to act as Lily's pediatrician.  He specialized in kids with autism.  So we printed out the narrative, backed it up with medical reports, and got them to the doctor.

He didn't read them.  Instead he asked the same exact questions all the other doctors asked, and wrote them himself on a laptop while our autistic daughter with ADHD sat as quietly as she was able. . . for four fucking hours.  This is a doctor who specializes in kids on the spectrum. 

One of Lily's TSS's was with us, and Lily was a trooper throughout.  It's only now, after the fact, that I'm getting sort of irritated thinking about that.  Should he, a doctor specializing in the pediatric treatment of children on the spectrum been a "hair" more supportive/understanding of Lily's frame of mind?  Regardless that's beside the point.  The point is. . . while he was busy ignoring our narrative and all the doctor's/medical reports we brought with us, he was asking us questions whose answers should have been located in the paper pushed aside to make room for his laptop. . . but they weren't.  It was like Harry Potter all over again.  The information should have been there, but some of it wasn't, because it was just something we'd forgotten to add.

The point of writing the blog was not to point out how old and absent-minded I'm getting though, the point was to highlight the difference between theory and practice in "being prepared".  Let me bring it back to that.  In practice, the narrative worked and provided some limited utility because, while the doctor didn't actually read it, my wife and I did lean on it to answer several questions he asked.  When he'd ask how old Lily was when she had eye surgery, for example, my wife would thumb through it until she reached "Vision" and read through to find the answer.  We'd never have been able to "bare-brain" that sort of thing combined with all the other questions he asked.  Maybe we'd have dug it out over the course of the appointment, but it would have been a six hour meeting instead of only four.

In theory, we give the narrative to the doctor.  He reads it, writes down his findings, and we have a 15 minute appointment.  In practice, the doctor ignores the narrative and makes us do all the same crap the previous two dozen doctors did while Lily spins further and further out of control and we have a four hour appointment.

I'm still very hopeful that this doctor can better direct Lily's care than her previous pediatrician, but
 it is a little disheartening that an "expert" in caring for autistic kids does nothing to plan for Lily's appointment, ignoring the steps we took to fast-track/ease the transition, and plods along asking us questions that are answered by the documents we placed beneath his very fingertips.  I get that his time is valuable.  We thought ours was too, but I suppose being put on an 18 month waiting list should have established the relative value in question beyond a shadow of a doubt. 

We answered his questions, and some of them even highlighted some holes in the documentation we provided.  He got the information he wanted/needed in order to guide Lily's care appropriately.  We learned that we probably need to return to that document and gussy it up a bit.  Not that anyone will look at it but us. . . but still.