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Friday, September 30, 2011

The Amazing Lily Volume 1: My Morning

Yesterday I finished 'my' social story for Lily.  I finally got all the pictures together to use and popped them into format, and. . . I like it!  I mean, it's not perfect, and my wife had a valid minor criticism of it that I immediately got all butt-hurt about and sulked for a half hour, but honestly, I'm awfully thin-skinned for the amount of criticism I sling out at others, so it was a character-building experience.  I look at this as a first attempt. If it works even half as well as I'd like it to, I'll probably do it again, and hopefully make it better.


In a nutshell, here is the criticism:  I added too much comic book-type stuff. . . the "zzzz" of Lily sleeping, the "cute" above the picture of her in her school clothes, and the busy format make the images and message cluttered in a way that might suggest to the parent (or perhaps therapist) of an autistic child that the message and effectiveness may be lost because of the child's difficulties focusing.

Here's my horrible rationale for making it that way:  "it looks cooler".  Okay, maybe that's a hair less reasoned than I want to make it sound.  It looks the way a comic book looks, but more so. . . it looks the way that other books Lily loves look:  colorful, interesting, fun. 

Lily isn't fascinated by books that have a single pictogram per page with "I wake up" written beneath them.  She's fascinated by colors and images, slick graphics and spoken words.  She's fascinated by Dr. Seuss and Barney books, Mickey Mouse and Dora.  

It's another decision point.  Do you make a book that conveys a simple message but fails to capture the interest of the child?  Or make a book that completely grabs her attention but the message, the utility, is lost from?  My hope, my belief, is that, like other books that Lily focuses on, this book will be one that she will want to pick up and thumb through; that she will begin to memorize it (as she does with her other books), script it, repeat it, learn it.  The utility won't be lost from it, it will just be slow and insidious, creeping up on her when she's not looking and then she'll know it, against her will!!  Mwahahahah!  Honestly, my hope is that the book will grab her attention and have utility, a nice mixture of the two.


I don't really know a way to incorporate "flip-page" technology on blogger's web page, so you'll have to just look at the pictures included in the blog and imagine how awesome turning them as little comic book pages would be. 
I printed them out on regular paper (let's call that the beta tester, or prototype), and I took them home for Lily to destroy peruse.

Now all I really need to do is make one for Emma. . . because lord knows Lily having a comic book of her very own and Emma not having one will make Emma sadface. I'll just have to sit down with her and see what she wants hers to be about.  And considering I promised Emma I'd write her a story by the time she was in 2nd 3rd 4th some grade prior to the time you read this. . . she's probably overdue.


--------


Last night I took the book home and placed it on the counter while I went about the business of getting "in place" so that my wife could go to the dentist.  Emma came upstairs and told me she thought the book was cool.  She had already read through it.  I thanked her.  She said, "you're welcome," then went to her room to change into her dance clothes.  No mention of "where's my book daddy?"  She's a neat kid, and a great big sister.  Not great big. . . great (pause) big sister.


Going back to something I said in another blog.  It's just this kind of understanding that allows parents to overlook the special needs of the "other" child.  And it's just this sort of behavior that it's necessary for me to reward.  But I digress. . .

Last night I introduced the book to Lily.  Things were going on, and she was fluttering around the room, but she did stop and notice, and as I turned the page, she pointed and said, "daycare" appropriately at a picture of her and her sister walking in the front door of the daycare.  Things looked promising.


okay. . . steady. . . steady. . .
And this morning, before we left to go to daycare, I sat down with her and we read the story.  She wanted to hold it (she always wants to hold the books), but she watched and listened as I turned the pages and read the message.  When I was done, I had her sit at the kitchen table and allowed her to hold the book and turn the pages.  I had to pry it away from her in order to get out the door.  From a fascination standpoint. . . golden.  

Also, though I feel this has been lessening of late anyway, she did not perseverate on not wanting school or daycare this morning.  Again. . . golden.

However. . . when we got to daycare she wouldn't sit longer than a second on the potty (sitting briefly before standing and saying, "I all done").  And when I left her sitting nicely at a table reading her book in order to kiss her big sister goodbye at the daycare, I found her wandering around with it (she has to sit when she 'reads') a second later.  And when I told her to sit down to read it (something she typically handles well) she screamed and refused and I had to take the book and give it to one of the caregivers, explaining that she can have it back when she sits at the table.  These are examples of departures from the previous two days' behaviors.  


I'm not saying the book was the reason, and really my primary goal behind giving it to her wasn't because she wasn't behaving well at daycare/school, but to make the transition from home-daycare-kindergarten a little less anxious.  It is ironic that she chose the day I gave her a book instructing her on proper behavior to completely depart from her proper behavior, though.  


Win some, lose some, but I'm hoping. . .





Thursday, September 29, 2011

Sweet Dreams

One of my favorite "activities" with Lily is our bedtime ritual.  My wife and I alternate nights with the kids.  And no, it's not because she's asleep.  And no, it's not because I also inevitably end up asleep (though that is a benefit).  It's just a sweet time of the evening.  It's a time, for whatever reason, that she lets her guard down a little and permits physical closeness, allows caresses, hugs and back scratches, and slows down her Charlie Sheen-like One-Speed-Go setting to a more moderate and easier to maintain, dare I say neurotypical pace.

The ritual itself consists typically of the following steps: 

  • Step 1:  Potty and Toothbrushing.  The potty step sometimes drags out ridiculously long because, unlike every other potty break of the day, she wants to stay on the potty.  Although the nightly ritual ends gently and quietly, with eyelids gently closed, it begins with near-mortal combat, the goal of which is directed at putting off bed time until the absolute last minute.  Like most kids, I suppose.  

  • Step 2:  Climbing into bed, and picking a story.   This step can drag on too, Lily will slump to the floor bonelessly, dragging her feet in floppy protest to the prospect of bedclimbinginto-ery.  Coaxing and cajoling often occurs.  Sometimes raised voices and fingers pointed rigidly in stern command occur.  We call it a draw if I have to pick her up and place her bodily under her covers.  Sometimes she picks a story, sometimes, when she's being particularly reticent, a story is selected for her.

  • Step 3:  Story time.  The story is a process all unto itself.  Lily loves books and will invariably ask (perseveratively) if she can hold the book.  The reading of the story often involves holding it at arms length (her arms are always longer than I think they are regardless of my nightly adjustment) and interspersing "No, Lily, Daddy holds the book." between story fragments.

  • Step 3a:  Often the end of the story involves a return trip to the potty.  Not always, but because Lily is still potty training, when she says, "I have to go potty" we almost always honor it no matter how many times she tricks us and gathers five more minutes of bed free time.

  • Step 4:  Cue the music and lights.  My favorite part of the ritual.  I disentangle from her and the covers, put her book back in the book shelf, turn on a dim 7 watt lamp, turn off the overhead light, turn on some quiet music* and climb into bed with Lily.  
*Lily calls the CD we play every night "Quiet Music" as if it is the name of the band.  It is, in fact, an Enya CD that I made my wife as "calming" music during our Lamaze classes for the birth of Emma, our first child, nine years ago.

Last night I turned out the lights and rearranged the covers.  Lily's night time thrashings often throw her covers into some disarray, and there are always a few last kicks and fidgets before we settle in.  I slid in beside her and said, "Time to say our prayers."


"I no want prayers," she said.


"We always say our prayers at night, Lily." 


"No.  I no want prayers," she replied.  I chuckled and began anyway.


"Dear god," I said slowly, "Bless. . . " (pregnant pause)


"Mommy. . . " she supplied.


"And?"  I prompted.


"Daddy," she said, after a moment's hesitation.


"And?" I prompted again, drawing the word out and allowing her time to fill in the blanks.  She didn't respond at once, considering her answer.  "Emma" would be her typical next response.  


I've been noticing lately that she perseverates over school and daycare, "I no want daycare, I no want kindergarten." or "I no like daycare, I no like kindergarten."  I attribute this primarily to anxiety over the big transition from daycare to kindergarten, or from being able to stay at home with grandparents to having to go to daycare, where expectations for her behavior, for good or ill, are higher. To that end I've been making her a social story, thinking that if I can run through her schedule with her every morning, perhaps the anxiety she's feeling over the looming specters of daycare and kindergarten will be a little less unnerving. 


"And?" I prompted again.


"Ingrams," she said.  That's her kindergarten teacher (name changed).  It was so cute and so unexpected and seemed to me to be almost a softening of the anxiousness that she usually expresses, it actually made me feel a lessening of the stress of sending her off to kindergarten, though it's very possible I read too much into it.  It's been four weeks so far.  Is she adjusting?


"Yes, Lily, god bless Mrs. Ingrams," I said, laughing softly, "And?"


"Emma and Lily amen!" she finished enthusiastically.  


"Good girl, Lily, " I said, gently stroking her hair.  She was fresh from a bath and her hair was soft and smooth and smelled sweetly of the "Pomegranate Splash" shampoo I used in it.  Sometimes she fights this gentle stroking; one last ditch effort to stave off the sleep that I can very easily see approaching in the rubbed eyes, open-mouthed yawns, and drooping eyelids.  When she's sleepiest, she fights it most.


She was a little calmer than usual, I think; a little quieter in her movements.  She looked at me with her big dark brown eyes and I whispered, "I love you, Lily."  Then I said, "I'm proud of you, Lily."  Then I finished with "I believe in you Lily."  That's the last of the ritual.  Every night.  I love you, I'm proud of you, I believe in you.


Lily replied, "I wub you," quietly, and I stopped stroking her hair and put my head down on the pillow, lying down next to her and shutting my eyes.  

A few moments passed in silence before Lily said, "I want more."  I lay in confusion.  More what?  More quiet music?  Another book?  


I sat up on my elbow and looked at her.  "More what, sweetie?" I asked softly.


"More dat." (more of that)


I was silent for a moment.  More stroking her hair?  Never has she asked for more 'dat'.


"You want me to rub your hair some more?" I asked, stroking it lightly again.  Silence in response.  I continued to lightly stroke her hair, brushing it back from her eyes, smoothing it over her ears.  Her eyelids fluttered closed, then opened wide again before closing for the evening.  She was not quite asleep, but very close. 


I waited a little longer.  I thought she might be asleep, but whispered close to her ear again, "I love you" and she mumbled "I wub you too," blearily back at me.  


I left her a few minutes later, her face relaxed in sleep; her blanket, the same blanket we wrapped her in as a newborn, clutched loosely in her fist and pressed comfortingly to the side of her face.


She slept all night, as she often does, a rare blessing for an autistic child as I understand it.  It was a good night.

Monday, September 26, 2011

Anniversary Dates and Divorce Rates - Happy 12th Anniversary



I succeeded brilliantly before failing miserably as a husband this weekend.  Friday night I took my wife out to dinner for our anniversary.  We'd "skipped it" in favor of other pressing concerns with a rain-check-promise of a rescheduled date Friday.

First of all, it was a great dinner (the brilliant success).  The restaurant was nice, the server friendly and informed, and the food was wonderful.  Second, we talked each other's ears off, which is probably the best part of our dinners out; our ability to pick up the dropped conversations from the previous months of silent parent-censored snippets of adult conversations made impossible by the presence of intelligent, but innocent ears.  We handed each other cards.  I blogged about my selection criteria here:  http://yourfaceismyblog.blogspot.com/2011/09/last-week-was-our-my-wife-and-i-12th.html, and indicated that the heart and soul of the message contained within my card was that we've been putting each other on the back burner for all sorts of good reasons, but that we need to focus more on us.

We talked about that.  We talked about the idea that parents who raise children with special needs have higher divorce rates.  See how I typed that all out like it's a fact?  We both thought it was.  Not to change the subject (because it's certainly related to this blog) but it's not a fact.  It appears to be essentially a well-accepted (and reasonable, I think) urban legend. 

Before I set out to write this blog I decided I'd get the facts and figures "right" so I went to the census bureau. . . they don't handle it anymore.  I went to the page the census bureau directed me to. . . they don't handle it anymore either.  Eventually I found a "Study" (more like poll, really) done by Easter Seals that looked at the numbers.  They're hardly conclusive, or scientific (better discussions of its merits or lack thereof from a "study" perspective can be found here: 
http://www.opposingviews.com/i/what-are-the-divorce-rates-among-autism-families), but they're about all that's available to interested folks, curious about their marital futures.  They can be perused here (if you register with Easter Seals):  http://www.easterseals.com/site/PageServer?pagename=ntlc8_living_with_autism_study_home&s_src=autism_study&s_subsrc=blog.

Essentially the numbers suggest that not only are divorce rates of parents of children with autism, asperger's or PDD NOS not the staggering 80% number bandied about in popular media. . . they're actually lower than the rates of parents without special needs kids straight across the board.  The arguments above-linked about reasons why the study may be biased are good ones, but I'll suggest to you that my opinion is that parents of kids with autism are probably about as likely to get divorces as parents of kids without autism, or for that matter, childless couples.  People get divorced for all kinds of reasons, and sometimes people who are bound for divorce have autistic kids, but that doesn't mean autism was the reason they divorced.

It's not in my immediate plans to divorce  my wife.  Relax, it's not in any plans I have.  She's pretty awesome.  So why all the talk about divorce?  Because in general, people think that the parents of autistic kids are bound for it.  Both my wife and I agree, however, that our relative closeness now is not autism driven. 

We have a mantra that we repeat whenever we're giving each other a hard time about what we have or have not gotten accomplished at home when the other person's out taking care of the chauffeuring duties, or attending mandatory meetings or whatever.  It's something we remember from the marital encounter classes that the Catholic church horse-whipped us into attending encouraged us to attend prior to having a priest preside over our ceremony.  It was essentially this:  Marriage is not a balance book.  You have to give your all to the relationship, not try to keep things "even".  If your spouse screws up, that's not your license to even things up by doing something stupid.  If you go above and beyond, that doesn't mean you use that as leverage to get your spouse to even things up.  Sometimes you're too tired to do much of anything, so you don't, and that's okay, provided when you get your energy back you pull your weight, do your part, do what you can.   

I thought a lot about the message to my wife before scrawling it in the card I gave her.  I thought maybe we should earmark a day every month as our time together.  Maybe it's dinner, maybe it's a movie, maybe it's just brunch or a trip to the bar for a drink.  Whatever it was, I intimated that perhaps we weren't giving our all to the relationship, diverting our resources instead to other important things without scratching out a defensive barrier and saying this is our time.  But these aren't autism-specific marital goals, they're just marital goals.  Everyone's lives are chaotic and busy and autism doesn't in any way change my beliefs of what comprises a 'healthy' marriage.

So, fresh from our fantastic supper out, and renewed in my commitment to my wife and our marriage and to time spent together with her, I promptly ditched her and didn't see her again until Sunday night (miserable failure).  And although I got a lot of work done (grocery shopping, picking up Lily's replacement frames, starting the laundry, etc), and although I had fun (a Pirate game with Emma and friends, a night out with my father to celebrate another belated event), we completely abandoned each other in favor of other priorities.  Again.

I try to do my part at home.  As I was texting the items that I was taking care of to my wife, ticking them off one by one, she texted back "husband of the year!"  I understand what a boon it is to come home expecting to have to take care of a dozen things and finding all of them done (because I'm typically the recipient of that pleasant surprise), and I further get that maybe not a lot of husbands tackle some of that stuff,  but you can't be "husband of the year" if you don't ever actually see your wife.  The things I did "for her" while she was gone were parenting things. . . not husband things.  They were things that a good dad would do.  I think that parents of children with autism and parents of children without autism need to remember that it was the marriage (or partnership) that made them parents in the first place, and remember to spend some time on maintaining that marriage (or partnership).  I married my wife before I knew what autism was (at least in anything other than a Rainman sort of way.  I married her before we had kids.  Parenting, has become a part of our lives.  But my relationship with my wife, though it's changed with the children in it, is not dependant upon the children.  It's dependant on the two of us.

Raising an autistic child can be stressful, but so is raising any child.  I don't like to imagine the sort of man who would point to his autistic child as the reason his marriage failed anymore than I would want to associate with the sort of man who points to his neurotypical child as the reason his marriage failed.  Marriages fail.  They fail for all sorts of reasons good and bad. 

While it's not particularly constructive to speculate about what our family would be like without Lily's autism in it, I suggest that perhaps (my wife brought this up at dinner) our family is stronger because of her autism.  And don't mistake the message.  I'm not saying that her autism is a blessing.  It isn't.  Are we stressed out?  Absolutely!  But also perhaps more focused, more aware our children and each other, less inclined to take little things for granted, more inclined to fight for our kids' rights. 

Every day I think back on my day with the kids and think of all the things I could have done better:  Involved myself more, yelled less, got up off the couch and played ball more or swung the kids more, or played peek-a-boo more.  I think of all the things I could have done better and then I go out and try to do them the next day.  I beat myself up a little because the kids are so important to me and I really want to be the best dad I can be.  

What I probably haven't done enough of is thinking back on my day with my wife and imagining the things I could be doing better with her, then going out the next day and doing them.  You raise your children to leave you.  Your goal is to get them to the point where they can leave you behind and go it alone successfully.  Your goal in marriage is stay together. 

Happy 12th Anniversary, Baby!

Wednesday, September 21, 2011

Capturing a Great Family Picture, and Other Cryptids


I thought a nice addition to this blog might be a few pictures.  So I created a new page (and tab for that page) called "Us", intending to use that space to post a few good family pictures, and, through the course of careful digging. . .  there aren't any.  Not of the whole family.  At least, not smiling.  So I continued to look, and typed "Coming Soon" as a placeholder. 



Family pictures seem so much more "Father Knows Best" when the children aren't screaming, thrashing, flailing, or darting out of the frame.  Lily is like antimatter, she's very difficult to contain.  You can do it, of course, but at a cost.  Containing Lily for a picture means taking pictures of Lily angry or upset, so posed family pictures become very stressful and almost always show either my wife or myself pinning Lily's hands so that she can't slap us silly while we're pleading for one of the grandparents to please take the damn picture already before Lily has a complete meltdown.
Lily's left hand is pinned, but the right is
pulling my wife's hair.  On the plus side,
her grimace of pain looks vaguely like a smile.
Experiences like that (see picture at left)
often lead to experiences like this.
(don't judge my experimental fruity
 pink drink phase)
There is no "look at the birdie" with Lily.  Lily does not give a crap about the birdie.  She just wants to be free to whirl and spin and dance and jump.  As a result, many of the pictures we take of happy Lily involve slightly blirred pictures of a departing Lily reminiscent of Bigfoot pictures.  It looks like maybe it could be a man in a fur suit. . . or sasquatch. . . if only there was a better picture.  It looks like Lily, I think that's her eye, is she smiling? 

Capturing good pictures of Lily, and I imagine many other AS kids with ADHD, is a product of two things.  1)  Having a camera close by when she's in a good mood, and 2)  Taking 50 bad pictures to capture one good one.  If we were living in the 70's, taking flash pictures with little rotating cubes on top of our cameras, good pictures of Lily would probably be just as rare as the aforementioned Bigfoot sightings.  Fortunately, we don't live in the 70's, and cell phones have cameras, and my digital camera will, for all practical purposes, hold as many pictures as I choose to take before I really need to clear up space.
Emma attempts to corral Lily for a quick picture
This means my iPhone and digital camera at any given time have multiple series of 10 to 15 slightly different versions of the same picture in a row that I then go back and leaf through (in THEORY) discarding the not awesome pics and keeping the good ones.


When you ARE lucky enough to catch lightning in a bottle, it is when Lily is sleepy, mellowed out or too tired to fight your efforts to contain her for a picture, she'll wearily allow herself to snuggled or held, and you've got yourself a quality IN-focus picture.  Alternatively, you've caught her at just the right moment when SOMEthing you're doing makes her giggle. And at that moment, if you have a camera, and can duplicate series of circumstances that led to the initial giggle, you can take happy Lily pictures as long as your fingers can push the button or your film holds out.


The drawback is that someone is almost invariably absent from the pictures.  There are good pictures of Lily, Emma and Lily, Lily and mommy, daddy and Lily. . . but no good pictures of Emma, Lily, daddy, and mommy.  Or precious few.  That "Coming Soon" is mocking me.

And okay. . . because my family will probably at some point read this. . . ALL family pictures are good because it's a moment in time where we're all together and we love each other and it's nice to remember that moment.  But come on.  The picture above is the only family picture I could find that wasn't more than two years old and Lily is pulling my wife's hair, Emma is sad (I probably yelled at her because I was stressed out about Lily pulling my wife's hair) and I had some bizarre eye ailment. . . like sunscreen got in my eye or something while we were on vacation, so my eye is all pink and I'm wearing my glasses because wearing my contacts made my eye look like it was actively hemoraging.  And although ALL family pictures are good because I love my family. . . that's not a good family picture.


So I thought about deleting the "Us" page from the blog.  But then I thought, it's funnier that it will probably always be "Coming Soon", waiting for just the right picture.  Maybe we could get bigfoot to take it.

Tuesday, September 20, 2011

Balancing Act

Me.  I have to get back on the treadmill.
There is a balancing act that every parent performs when they have more than one child:  the act of lavishing enough love and attention on each that the other doesn't feel slighted by a perceived lack of his/her share. 

On the one hand (Lily's point of view) that's easy.  Lily doesn't notice whether we're spending extra time with Emma because she doesn't (for the most part) care.  That's not to say that she doesn't miss us, or want us, especially when she's being asked to attend to some less-than-preferred task/function (currently that's any TSS time, daycare or kindergarten), but for the most part, as long as we're not absent, just being there seems to satisfy her sense of "mommy/daddy time".

Emma, in the case of this blog, the "other" child, however, does.  It did occur to me as I began posting to this "special" blog that Emma's awareness of a "special" blog for Lily would immediately prompt the question, "Where's my blog, daddy?"  That awareness manifested iself last night, as I was working on the little cartoon face I drew of Lily for her blog title. 

With Lily fast asleep upstairs, I fussed with the picture on the PC from the office.  In the Family Room, my wife, playing with Emma, called, "What are you up to in there?"

Unable to suppress my urge to surprise or maintain the mystery, I responded, "Working on something!"

"What are you working on, daddy?"  Emma joined in.

"I'm drawing a picture."

"Can I see?"

"May I see?"

*groaned response, pause* "May I see?"

"Sure!"

She joined me in the office and looked over my shoulder at the picture.  "I like it," she said brightly.  "What's it for?"

This part I was prepared for, "I'm writing an autism blog for Lily.  This is a picture for the title."  I hurried on, "I have a blog for autism, and one for family stuff with mommy and you and Lily and I together."  I figured she'd want to know that I wasn't just doing something cool for Lily and forgetting about her.

I should have known what would follow, but didn't think it completely through.  To be honest, the blogs themselves aren't anything I necessarily want my 9 year-old reading until she's. . . well. . . not a 9 year-old anymore.  I thought the blog itself and the idea of blogging would be something she'd remain ignorant of until her early teens at least.

"May I see the picture for our blog?" Uhmm.

"I haven't drawn it yet."  Yet.  The magic word in this case.  I bought myself time.  The thing I had overlooked, that should never have been overlooked, is that yes, having a child with special needs sometimes means you have to pay them special attention, even extra attention, but it also means likewise paying special attention to the child without those needs. 

I hope Emma never feels that ironic sensation that if only she'd have been the one with autism, she'd be getting all the special attention.  I hope that we, as her parents, always do the extra "work" we need to do to make sure she feels included and loved and yes, "special". 

So after a momentary lapse, and a temporizing "yet", I formulated a plan to add a cartoon to the title of my other blog as well, and I remembered something I should never have forgotten in the first place:  That yes, I'm willing to put in the extra time and effort needed to give my special needs child what she needs to help her succeed in life, but that will never preclude or eclipse my other daughter's needs.  She's not a "special needs" child, but her needs are equally "special."

Friday, September 16, 2011

Pulling Past Blogs

Bah!  What's it been?  A week?  I changed my mind and decided it made sense to pull the Lily Kindergarten blogs (not the OTHER Lily blogs, but those specifically) into this one, just for the sake of ease of reading/continuity. 

Next week I'll probably put half of them in some OTHER blog somewhere else because that appears to be my M.O., but for now. . . despite having lied about making my peace with leaving them there. . . I'm bringing them here. 

Hopefully I'll be able to put them in chronological order, or it'll make no sense and I'll be forced to delete them. 

---

Okay, I brought over two.  And they're in order before the Opening Comments Blog (or the "Blog of Lies").

Thursday, September 15, 2011

Social Stories and Kindergarten



Comicbook makes customizeable comic-like pictures

Part 1:

Lily loves books.  She thumbs through them incessantly if allowed, sometimes not even glancing at the pages, other times, keeping her gaze fixed on a picture of particular interest and discussing it with us perseveratively.  They're a fantastic reward for her and very motivating. . . but. . . Lily rips books.  At one point it was a primary focus of our IEP, "book intervention: stop the ripping". 

She can rip card books or paper, it doesn't matter, and we suspect that she gets some sort of sensory feedback from the act of ripping, because the one type of book she's incapable of ripping, cloth books, she's completely disinterested in.  Some strategies we've tried:  Eliminating books for two weeks entirely and bringing them back slowly, providing her with scratch paper and taking the book away when she appears to be starting to rip (telling her that THIS is the paper for ripping), sitting with her hand over hand, allowing her to turn pages but only if her hands are in certain locations on the books, none have really ameliorated that desire to tear the pages.

Part 2:

One of the guys at my office had a new project come in for a major company.  They wanted all their project documentation sent on this special paper that costs about five times what normal paper costs.  The admin at the time grumbled ceaselessly about what a pain in the ass this special expensive paper was because it couldn't be fed through the copy machine for printouts.  The pages were too heavy or too slick or something.  It always, ALWAYS jammed.  So each piece had to be fed through singly, and for several copies of a several hundred page document. . . that takes time and considerable patience. 

The copy guy was summoned.  He fixed it!  But then it started jamming again and he'd be resummoned.  Eventually the project ended and the admin was laid off and there was a box of special expensive paper left over. 

It turns out that paper was nominally "unrippable".  Oh it CAN be ripped.  You have to be really, really serious about ripping paper in order to get it to work though, and then only if you know the trick, and possess grownup size hand strength.  It appears on very close inspection as if each sheet is encased in an invisible coating of some polymeric material, laquered so closely to the paper that it feels like. . . well like paper.  When you finally do rip it, it will rip all the way through, but getting that coating to tear is a bugger.

Part 3:

I downloaded an app for my iPhone called Comicbook.  It's pretty nifty.  It takes your pictures and allows you to lay them out in selectable comic book layouts, adding speech bubbles and text, "stickers" and special effects, creating a pretty good approximation of a comic book. 

Nags Head, NC
I put together a couple little collages just to try it out, adding some speech, a graphic or two, and combining it with other pictures to create one page of a hypothetical comic book from a trip we took to Chicago and another of a day we shared at the beach in Nags Head, NC.  It got me thinking, wouldn't it be a cool scrap book/memory book for my eldest daughter to commemorate the trip to Chicago (for her 9th birthday) in a little printout comic book that she could show her friends?
THIS got me thinking further, heyyy, wouldn't this be an AWESOME social story generator?!  It seems custom made for that sort of thing.  I mean, isn't the textbook document on the subject even CALLED, "Social Stories and Comic Strip Conversations" (Gray 1995)?

The only problem would be, once I printed it out, Lily would rip it to smithereens. . . but. . . but wait!!  I have that paper!  Yeah, that's right, I took it home (office theft is frowned on, but I asked the project manager, I swear) with me to print out a social story her BSC had written for us a while ago, then never got around to tackling.  Then, as now, unrippable stories for a girl who loves to rip pages seemed brilliant.

Part 4:

I want this to be just as simple as writing a story for Lily about her morning preparation for Kindergarten/Daycare.  Lately she's been saying "I don't want Kindergarten".  And while I don't know this for certain, I suspect it's just daily apprehension.  Once she's actually at Kindergarten, people whose feedback I trust are telling me that she's really integrating nicely, behaving appropriately, and having fun.  It's just the before daycare ("I don't like daycare" is also a familiar predaycare theme) and kindergarten perseveration that leads me to believe she's anxious about them.

I thought perhaps creating a social story for her with my Comicbook app, on unrippable paper, and reading it to her in the mornings before school might help her perceived anxiety.  Maybe allowing her to script her morning a little more positively.

My brain is interfering with the whole process though (stupid brain) because I want to do it RIGHT, and I'm aware that there are recommendations for how to structure a social story in order to make it more effective, things like "two to five cooperative, descriptive, perspective, and/or affirmative sentences for every directive or control sentence" is an example of a tidbit I unearthed as I researched my "project".  So I'm stymied, paralyzed into inaction by my fear of messing it up if I do it.  Or doing it all then realizing I did it wrong and having to RE-do it.

I may end up just deferring to her BSC and saying, "Please write me a social story tailored to fit the following sequence of events, wake up, potty, TV, breakfast, car ride with music, daycare, bus, etc".  I've read the social stories. . . they're EASY. . . but like so many other things, it just makes me aware of the level of expertise required for ANY given task no matter how small that it seems possible I could screw up a story that starts, "Mommy and Daddy wake me up in the morning.  I am sleepy, but excited to wake up for the day.  Mommy holds my hand and walks me to the potty.  Etc."  Ditch diggers have their own set of guidelines and arcane knowledge about which I'm ignorant, and so too do social story writers, it would seem. 

I just want to make a nice story for my little girl.

Wednesday, September 14, 2011

On Stress, Sometimes it Ain't Easy Bein' Cheesey


I recently read a blog about the stresses of air travel with an autistic child.  I commented, but blog life apparently mirrors real life, and, like the people who listen to me prattle on, the automated blog comment moderation software said, "your comment is too long".  It recommended I break it up into multiple comments, which I dutifully did.  Essentially, the comment was about stress levels, and why we often overlook the stress of situations because we mistake the duration of a stressful event with how stressful it will seem to us overall.

Do you eat Cheetos? Bear with me. The best Cheetos, in my opinion, are the Cheetos at the bottom of the bag. The cheetolettes, let's call them. The cheetolettes are the tiny little nubs that have the same magically delicious (apologies to Frosted Lucky Charms (TM)) orange cheesey powder on them. . . but less puff (the vehicle that transports the deliciousness to your mouth). So the RATIO of deliciousness to puff or D/P is much higher. There's more cheeseyness. . . less puffiness.

Looking at it from a stress standpoint, you might assume that in a two leg flight, composed of a short, less-than-two-hour flight, and a long 15-hour flight, you would really need to get mentally psyched up for the 15-hour flight because the sub two-hour flight would be just a hop skip and a jump (as the blogger did), over before the shit hit the fan. But what you'd really have is all the stresses of a 15-hour flight. . . security check, waiting to board, boarding, sitting, drink cart, landing, debarking. . . compressed into an evil little two-hour cheetolette flavored with powdered misery. Your ratio of stress/duration would be MUCH higher. And unlike the joy you get from a cheetolette, the flightlette delivers nothing but pain.

Now if you're excuse me, I have to go buy cheetos.

Monday, September 12, 2011

The Little Things


I struggle sometimes celebrating Lily's small victories or milestones, conflicted by some superstitious dread that I'll somehow jinx it, that a celebration of a week without any potty accidents will inevitably lead to a day with ten. I'm even worse at relaying celebratory stories with friends.  Every story shared about Lily with my peers requires a recap of where she is now and where she's come from in order to lend the listener any kind of context of the enormity of what they might consider the tiniest of milestones without.  

I'm trying to get better at letting myself celebrate.  It's not fair to my daughter if I don't. We celebrated Emma's milestones.  And yeah, they were "typical" milestones, but no more valid or momentous in their relative context.  And it's denying myself a little extra sunshine. And why?  No rational reason that I can determine.

This morning she stood very close to her big sister, just invaded her personal space, blundering happily over and standing uncomfortably close to Emma as she sat eating her morning breakfast.  This is a physical closeness she rarely seeks out with anyone unless thoroughly exhausted.  And her big sister just smiled indulgently and let her hover; suffering the occasional awkward bump of heads or pull of her hair just to be close to her little sister for a little while, joining our amusement, giggling good-naturedly at bonks and swipes. And it was sweet, and wonderful, and I think we all celebrated a little.

A meeting of the minds, or bashing of the skulls?  It's a fine line
And I told Emma how Lily never does that with anyone and made a big deal of it, and I could sense her swell a little with the pride of being Lily's favorite.  And when Lily started to get a little rougher, reaching up to grab her hair, or pushing her fingers at her face, I reached across Emma to ward  Lily off, and Emma just batted my hand aside reflexively, protectively, and said, "It's okay, Daddy", happy to share even this rough rare closeness with her little sister.

It was a win. 

Opening Comments



I think Lily's story as it impacts our family probably merits its own blog.  Certainly I'll still blog my own ridiculousness, and trials and tribulations in my other blog, but it seems like Lily's own struggles are so specific, and require so much background for a casual reader (at least a reader who isn't raising his/her own special needs child) that I want to set it aside and make it "special". 

Emma takes center stage in FAR more than her fair share of blog posts, and I suspect that she'll take the stage to share in some of Lily's blog post "glory" here as well, but I think posting autism-specific blogs to a specific site provides a little more utility for me (assuming I wish to look back with any hope of finding something) or anyone who wishes to keep up with her, or just share common experiences.

The first post (after this one) will just be a copy and paste from the larger blog.  I thought about doing that with the other autism blogs but decided against it.  They're there, and there they'll stay, and I've made my peace with that.  I wanted to use "their" in that sentence, just to make it even more awkward, but I'm too lazy to figure out how to work it in properly.

Tuesday, September 6, 2011

Umbrellas, Planes and Buses


It's raining in Pittsburgh.  That shouldn't shock anyone, I suppose, although it doesn't really RAIN that much in Pittsburgh so much as it THREATENS to rain.  Anyway, I have an umbrella to keep the damp off me.  I brought it in the office with me this morning from the car.  It had a cover, like a slip cover over the top of it.  Why?  To keep it dry?  It seems like a stupid design to me. 

Tomorrow Lily goes to Kindergarten for the first time.  To SCHOOL for the first time.  We'll go watch her pile on the bus, and there'll be an aide for her, but I just have such a sick feeling like a knife-twist of dread in my stomach about this whole thing.  Emma goes to HER new school too, and I'm proud and excited and even a little nervous for her, but she'll be fine.  And so will Lily I trust.  But I'm still apprehensive.  She'll ride the bus, she'll have a homeroom, and circle time and eat in the cafeteria, and I'm scared. 

I guess it's just one of those things; like when I fly on a plane.  I get air travel.  I understand the Bernoulli effect.  I'm fully vested in the physics that allow airplane wings to lift the plane off the ground and keep it aloft.  I TOTALLY saw that episode on Discovery Channel where the wings can bend back almost double and still not snap.  I've read the statistics that say air travel is a safer method of transportation than driving, or, at least I know a guy that says he read that article.  I've watched my fellow passengers calmly sip their drinks or laugh at some conversational quip with their traveling companions as the airplane hops and dives and yaws alarmingly underneath my feet and I push the imaginary brake pedal and white knuckle the arm rest, putting away my novel du jour so that I can focus fully on my terror and trust in the physics to keep me alive.

And I likewise know that the supports and protections we've put in place in conjunction with Lily's IEP team will protect her and keep her aloft, and help her succeed . . . but I'm similarly scared for my little girl.  Scared of the bullying.  Scared for her confusion and her struggles.  And like the airplane, there's just a certain amount of trust I am forced to rely on, and just deal with my terror quietly until there's something that I can actually address.

It's supposed to rain again tomorrow, and I'm having trouble with the bus company.  It seems they don't want to pick Lily up and drop her off again at the curb of the daycare where they picked her up and dropped her off last year for her special preschool program.  Because they don't know if it's possible.  I'd have thought the experience of all last year doing so would have proved that beyond a shadow of a doubt to them, but they're citing new resources (a different, longer bus, perhaps) . . . may not fit.  So they agreed last week to contact us and let us know if they'd be able to make it work before school started. 

School starts tomorrow and they haven't contacted us.  It's not even the first day of school for my little girl and already the physics and protection and support is failing and the airplane is crashing down and all I can do is call and leave messages for the bus company politely asking them if they've figured out yet whether the bus they're sending tomorrow morning will be able to accomodate my daughter's special needs, or if I have to STOP trusting in the process.

Lily's going to need an umbrella if the bus won't meet her at the curb, and she'll need an aide to hold it for her.  Stupid bus company.