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Friday, March 30, 2012

People, Not Data


So the new data is here (are here? hmm), and I find it almost entirely meaningless.  It's "new". . . from 2008.  It's a moving target.  If we could compile data instantly, that data RIGHT NOW would probably paint a better picture of reality.  So we've moved from 1:110 to 1:88. . . meh.  Maybe it'll be 1:57 when the "new" data for 2012 comes out in 2016.  I say "almost" entirely meaningless because obviously we have data that shows an increase (a pretty substantial one) and to me in my tunnel-vision Lilycentric world of autism, that means that the attention of government to the issues of funding and services and the like will be front and center as opposed to what data showing a decline might presage.  (ie,. . . "Alright, looks like we got a handle on this here 'autism' thing, let's spend more money on missiles!")


But looking at that data and applying it directly to life is like studying air by spray painting the wind.  You're not actually looking at the air, you're looking at how the paint is affected by it.   You're not looking at the people.  You're looking at the effects of the people on the data.  These ARE people, not data.


Usually this blog is more or less "slice of life" type stuff, and as such I avoid pissing people off because I avoid "issues" and just talk about our lives, but data notwithstanding, I was alternately bummed out and pissed off over a renewed "discussion" between parents and self advocates a couple days ago.  In the midst of Wednesday's hullabaloo betwixt self-advocates and parents on one of my favorite blogs, I kept returning to that mantra, "These are people, not data."  


The topic of the blog in question isn't germane to this post, because you can insert whatever topic you like central to the autistic community:
Vax/Antivax
Love Autism/Hate Autism
Awareness/Acceptance
Person first language/um. . . NOT person first language (there's probably a term)
Environment/Genetics (maybe this is a bad example)

In general, both sides seemed to be approaching the topic on that day from a very clinical standpoint.  By that I mean both sides were offending the other remorselessly by failing to see things from any perspective other than their own personal perspective, by failing to respect the feelings of the other side. . . neither side seemed to understand how offensive the other side was being to the other.  It was unilateral.  Unilateral bedside manner failure.  Self advocates were offending parents, and parents were offending self-advocates.  "We" were united by our offensiveness AND our denial of the rights of our "opponents" to be offended.


Both sides were using the idea that the other side shouldn't be offended because they a)  weren't autistic, or b)  a parent, interchangeably and without irony:  "Let me tell you why I'M offended by your statement, and why you can't dictate what is and isn't offensive to me, and why YOU shouldn't be offended by what I just said."  Copy and paste the previous statement and apply it to either side of the discussion.  Parent, meet self advocate, self advocate, parent.  These are people, not data.


Data IS important, but what is MOST important is that these are people we're talking about.  They are parents, autistics, sons and daughters, brothers and sisters and in some cases. . . "several of the above".  They are people who ARE offended by being told how they should feel.  Tell me how I should feel about almost any topic and I'll tell you I find that offensive EVEN IF I AGREE.  But I'm stubborn like that.  Because I'm just a person, you know, like all you other people.


I think what unites us all (apart from the mildly tongue-in-cheek aforementioned offensiveness):  We want what's best for ourselves and those we love.  And we want it PASSIONATELY.  


Let me briefly sidebar into my personal experience with fighting:


I love my wife.  She's one of the best human beings I know.  She is loving and caring and compassionate and thoughtful and, and, and. . . but we still fight, and it is only after the emotion of hurt feelings, stubbornness, and anger are dulled by time (sometime long after the 'sorries' are spoken) that I'm able to acknowledge and accept, "This wasn't about her being spiteful or cruel or selfish or stupid.  This was a misunderstanding, or a difference of opinion."  She wants what's best.  I want what's best.  When I force myself through my anger to remember that I love her, and why I do, I remember to trust that she didn't hurt my feelings out of spite. . . that the fight was probably because we were discussing something about which we are passionate and, being people. . . we offended each other.  Apologies are hard because I'm proud.  It takes a while for me to cool off.  I'm a person.


Since I've joined the blogging community, more specifically the parent blogging community. . . even MORE specifically, the austism parents community (I can't say autistic parents, cause I'm not autistic, but I hope you know I mean, "parent of an autistic child") one of the things I wanted most was to avoid offending the self-advocates.  These PEOPLE represent the exclusive club to which I hope my daughter one day gains figurative admittance.  These people represent the cream of the autistic crop:  Autistic people who FIGHT PASSIONATELY for what they believe in, for their rights, for their due.  


Often I don't understand the viewpoints being expressed.  I read and reread what's written there.  Sometimes there's a spark and I think. . . OKAY, i see what you're talking about!  Sometimes I still don't make the connection.  Because I don't want to piss anyone off, I sometimes just "listen" to both sides "yell" at each other (how many times did I see the concept "You're not listening to a word I said," expressed in the comments on that blog?  That was a trick question.  The best answer is "many").  The hypocrisy is that each side used that same argument against the other.  Neither noticed the irony.  


These are people.  They care about you.  They care about your children.  They can be offended in a way that only people who TRULY care about something or someone can be offended.  Tread lightly, be respectful, try to understand each other's perspective.  These are people, not data.


I offer you an insight into MY perspective.  I'll take the liberty of crossing out one word that changes nothing to MY perspective, but is concentric to others (and needs to be reinserted when attempting to understand that other person's perspective), to allow the insight to apply to both my children.


I am a parent of an autistic child.  I want what's best for her.  Sometimes I don't know what that is.  Because there's no handbook on how to raise autistic children "right", I can only try to educate myself on all the various ways and pick what seems best.  Sometimes I struggle with her autistic behaviors.  I look for insight from autistic people who have gone through what she has gone through, or from parents who have raised their own autistic children.  People disagree with what works best, and sometimes I get led astray by misleading facts or easy answers, but the decisions I make, I make because I love my autistic daughter.  I believe the fight to achieve my autistic daughter's rights will be fought by me until she can fight for herself.  I will respect her as a human being.  I will ask to be respected as a human being.


I am a parent.  I sometimes say I'm the parent of an autistic child, but the word autistic is irrelevant or at least incomplete because "parent" doesn't just apply to my autistic daughter, it applies to my neurotypical daughter as well.  Autistic or not, they are my daughters.  I will be offended if you tell me I'm raising my daughter "wrong" (autistic/not autistic) because I have been pulling my hair out, not sleeping at night, worrying, researching, praying and in general doing my level best for the last 10 years (my oldest is 10) to do what's "right".  I am passionate about it.  I'm sensitive to it.  I have a right to be offended that is unrelated to the topic of autism.


Can I avoid using the word "ally"?  I want to avoid it.  For some reason it's got a negative connotation now in this arena.  I am a parent who is sympathetic to the rights of the autistic community. . . how's that?  I offer this:


I promise to respect you as a human being
I promise to believe you when you say you are offended.
I promise to try to understand why you were offended, and change my language, or tone to be more respectful or at least less offensive (and even to change my opinion when persuaded, though there will be times I won't, and I hope we can respectfully disagree)
I promise to do my best to support YOUR cause (which is my daughter's cause)


I ask that you understand that your cause is not my only cause, that my cause is not actually "Austim", it is "My children" and that sometimes those causes may align, but that removing "autism" from the table changes nothing.  I still want what's "best" for my daughters, and sometimes that has nothing to do with autism or the opinions of the autistic community.  I ask that you remember I am a person, and not just some "parent" with an opinion.  


This post has gone on way too long, and I'm just going in circles.  We're all people.  You have every right to be offended.  I have every right to be offended.  Let me close this rambling with a couple things.  I've seen some of my favorite bloggers post similar titles and themes in the wake of the "new" data.  I'd love to see a few more. . . hopefully less verbose than I have been. . . People, Not Data posts.  


I've been thinking about this post since Wednesday, but saw another of my favorite bloggers bright and early and decided to get it on "paper".  I'd like to link you to her page.  In fact, I'd love to edit this throughout the day or week or month or whatever and  substitute a FACE for the data.  Add your blog address in comments if you feel like exchanging your data for a face.


See Jess's post, "Not Just Numbers, People" >>HERE<<.  She puts a lovely face on 50% of HER data in that post.  


Or >>HERE<< on Dani's post.
Or >>HERE<< on Dawn's post.
Or >>HERE<< on Jen's post.
Or >>HERE<< on Lisa's post.
Or >>HERE<< on Lexi's post.
Or >>HERE<< on Lisa's post. (I totally did not typo.  There is more than one LISA!!!)
Or >>HERE<< on Diana's post.
Or >>HERE<< on Alysia's post.
Or >>HERE<< on Lana's post.
Or >>HERE<< on Adriana's post.
Or >>HERE<< on Marj's post.
Or >>HERE<< on Lisa's post.  (THREE??)
Here's my (well. . . Lily's) face:  
1:88?  Nah. . . 1:10,000,000,000!
Be nice to each other, goddamnit.









Tuesday, March 27, 2012

Joy In Mudville?

Emma probably handled not knowing the results of the talent show auditions better than we did.  Friday was supposed to be "the day".  The results were supposed to have been posted outside the Activities office and the lucky (talented, rather) participants would be listed, along with the practice schedule.

Emma had a fever Thursday night, and we kept her home from school that Friday, emailing whoever we could think of on the staff to determine whether the results had been posted.  They had not.  There was a "glitch", the details of which escaped me.  The results wouldn't be posted until Monday.  Are you kidding me?  

The weekend was busy.  Every day is busy, but Emma's mind could easily be distracted from talent show results by dance classes, softball practices, softball clinics, or shopping with mom, and when we finally came up for air it was Monday morning.  

We knew she wouldn't be able to tell us, but we asked her anyway. . . if you can get one of the teachers to let us know. . . 

I asked her, "Whether you make it or not, can you please talk to Mrs. H. and thank her for working with you?"  She agreed.

I texted Leslie in the afternoon just to see if she'd heard anything.  Silly, that, she'd have texted the minute she heard, and I knew it.  When she finally sent me a message later that day telling me she was leaving work, I knew we were only one commute away from finding out. 

I felt dread.  I don't know why.  Good news is great. . . anybody can handle good news.  But what if it was bad?

45 minutes later I looked at the clock at work and thought, "I wonder if she knows yet?"

I texted Leslie again, knowing that she might be taking the kids home, and probably wouldn't answer if she was.  I'm in the blue. . . 

Leslie called me a few minutes later.  Emma didn't make it.  There was no joy in Mudville.  The answer to the question of "how's she handling it?" was more complicated.  She was disappointed, but seemed to be handling it well.  Bummed but not in tears, she was "in a mood", in Leslie's words, but Emma is often "in a mood" when she gets home from school because she eats like crap, and when she's peckish, she gets whiny.

When I got home we talked a bit before dinner.  She really did seem okay with it.  Probably it helped that nobody else from 4th grade made it to the big show in singing.  Probably it seemed more understandable to her that she wasn't included because it really does appear that the 120 or so try outs had been weeded down to about 20 participants.  Tough odds.

I asked her whether she had talked to Mrs. H, and she said she had.  She said she thanked her for taking time to work with her.  She already knew she hadn't made it then.  I liked that. 

She was probably a little bluer than usual, but she played with Lily, plopping down over and over into a bean bag chair after dinner was over and saying, "look Lily, I fell down!"  Lily would then grab her own bean bag chair, eager to play with her sister, falling onto it saying, "I fall down!"

It was Leslie's turn to put her to bed tonight.  She hates being lectured; Emma, I mean.  Leslie hates it too, but Emma is who we're talking about.  As she curled into bed next to her mother, after I'd told her I loved her and to have sweet dreams, I said I wanted to tell her something.  I could see her mental eye-roll as she replied, "If it's about the promise, mommy already talked to me."

"The promise?" I prompted, and Leslie explained.

"I just asked her not to let her disappointment keep her from trying again.  I told her that we thought she was really good, and if it's something she wants to pursue, to promise not to let this keep her from it."

"Oh," I said, nodding, "no, it's not that."

She looked interested again.

"I just wanted to tell you, that I'm really proud of you for trying out even though you knew you might not make it.  I wanted you to know that what you did was really brave and that I don't think I could have done what you did when I was in 4th grade, getting up in front of all those people and singing alone."  Leslie murmured her assent as I continued, "Whether you sang well or poorly, I'm proud of you just for getting up and trying.  But, I think you sounded great.  I really loved hearing your voice, and I hope you do try again."

I honestly think she was happy hearing this.  I don't know if I would have been at her age, the disappointment of not making it still fresh.  I just don't think I was that mature in fourth grade.  I could tell she liked hearing that I thought she had a pretty voice.  It's not like I'm "stingy" with praise or anything, but I choose what I praise carefully.  I hate false praise, giving it and receiving it, and I think kids and adults alike can sniff it out without really breaking much of a mental sweat.  She DID sound good.  She WAS brave.  That's easy praise to give. . . no qualifiers.  But I could also tell that she liked hearing that I thought she was braver than I was at her age.  I'm proud of her.  WE'RE proud of her, but it's more important to me that she be proud of herself.  And I think she honestly IS proud of herself for trying out even though she didn't make it.  

I'm always so tempted to turn her losses into wins when she's disappointed by something, to buy her a prize when she doesn't win the raffle or gift basket or whatever. . . and lose out on the opportunity to let her absorb the loss and learn from it.  I was determined that I wasn't going to do that this time.  I wasn't going to minimize what it meant or buy her icecream or something to compensate.  She took the loss and she handled it.

I wish she would have made it, because I know she wanted to make it, but it wasn't a loss.  There might not be joy in Mudville tonight, but I'm pretty sure it'll be back by tomorrow.

Next year.

  

Friday, March 23, 2012

Special Needs Ryan Gosling - Week 7?



I missed week six of Adventures in Extreme Parenting's "Special Needs Ryan Gosling" meme owing to Emma's turning 10 and the postings therein related.  I vowed to return however, for week seven.


Since 99.8% of the participation is by "mom" bloggers, the interpretation generally seems to be "pretend as if Ryan Gosling is your significant other, and fill in the blanks, fantasizing about how supportive and awesome he'd be".  


My take however, is that Mr. Gosling is ME.  We're almost the exact same guy anyway.  He probably dresses better.  Regardless. . this would be me talking to MY significant other.  


Without further adieu, today's participation:



Wednesday, March 21, 2012

The Audition

The timeline was to have worked as follows:


Monday, 4th graders auditioning for the talent show were to show up at the auditorium to perform their acts in the order in which they registered.  Emma, my ten year old daughter (see recent birthday blog here) signed up 10th. Tuesday and Thursday (Wednesday they had the day off from school) the 5th and 6th grade participants would try out.  


I knew this because I called the woman who was in charge of the talent show told me so on the phone.  Auditions started at 3:30, she told me, so expect to pick Emma up around 4:00.


My wife and I arranged to play hooky from leave work early and sneak into the auditorium to watch her sing "Defying Gravity" solo.  Emma had hitherto refused (not unkindly) to allow us to listen, and the way we figured it, if she didn't make the cut, we'd never get the chance.  It had been explained to us, possibly in error (the jury is still deliberating on this) that only about 20 acts would make it.  We found out at the tryouts that 45 4th grade acts were auditioning.  That still left the fifth and sixth graders, and unless some sort of grade quota was employed, it would be pretty cutthroat.


Emma told us when we picked her up after her performance that a sheet would be posted on Friday showing who made it and giving a "practice schedule" to the lucky acts.


We arrived at the school at about 3:40.  Outside the closed doors of the auditorium we were informed by an indignant parent that nobody was allowed in the auditorium for tryouts.  We'd been worried about that, but we could hear enough of what was going on inside to know we'd at least hear her perform even if we couldn't see her.


We walked down the hall and found an open side door to the auditorium.  Though we weren't allowed in, we had an obstructed view of the stage (obstructed by a huge chalk board, the sole purpose of which appeared to be "view obstruction of the stage by interested parents smart enough to find the open side door").  We parked ourselves by the door, glancing in occasionally to see if we recognized any of the faces auditioning.  Other parents chatted outside the door and someone from inside the auditorium closed the side door wordlessly without acknowledging our presences there.


This made the indignant parent indignanter, and she escorted her son, who was inexplicably performing some sort of kata with what appeared to be a pool cue, to the front of the auditorium again.


We listened.  Performances were limited to about a minute and twenty seconds each, and students opened the side door and shuffled past us, occasionally recognizing us as Emma's parents occasionally ignoring us entirely.


The singing acts varied widely in pitch and ability.  Some of the kids had nice voices, some were a bit pitchy, some were just inconsistent, the beauty of their voices marred by their lack of mastery of 'singing' (either by virtue of failure to practice, or simply because they really haven't received any voice training at this point), pitch changes in the music produced wildly inconsistent responses from the young singers.  Most imitated the artists whose songs they were singing, imperfectly performing "improvisational" runs and singing through their noses, imagining, I suppose, that singing that way made their voices sound more like, Adele, Taylor Swift, or other.  On the whole it was like listening to bad karaoke without the benefit of a four beer buzz.  There were some highlights though, and all of the music was filtered through my brain's knowledge that these kids are 10.  Regardless, after listening to several acts, the clock pushed past four, then four fifteen, and still the muffled voice had not called Emma on stage.


A woman exited the front of the auditorium with a clipboard and addressed the parents gathered there.  We could hear the conversation and joined the group to listen in.  I was surprised how few parents came, though many perhaps knew that they'd not be allowed to see their child perform and were just waiting at home for the call from the school office that their child's performance had concluded and could they please come to the school to pick him/her up.  


The woman informed us that they had modified the sequence to accommodate parents who were already there to pick up their children, and I chimed in that Emma's parents were their to pick her up, and that we'd been told she'd be done by 4:00 (had to dig that thumb in a little) and the woman nodded and repeated her name back to us.  As she turned to walk away I said, "But do NOT tell her that we're here."


She looked blankly at me for a moment then gave a bit of a half smile and said, "Got it.  Emma's performance needs to push up. . . for NO reason.  NO REASON AT ALL." (emphasis hers).  We smiled and she retreated to the auditorium, and we tiptoed back to the side of the auditorium.


The karate boy and his mother had left, but he'd forgotten what appeared to be a small golf towel (undoubtedly to mop his face after his exertions).  When the next act completed a young girl emerged from the auditorium to collect her things, and I surreptitiously kicked the towel into the doorway, blocking it partially open.  My wife met my eyes and I smiled and blinked innocently.


When the next act concluded, my wife recognized the girl leaving the auditorium and offered (unnecessarily it turned out), "do you know we're Emma's parents?"


The girl brightened and answered (in error, I believe), "Oh Emma is my best friend!"


"Well don't tell her we're here, okay?"  The girl agreed happily and shuffled off to find her book bag. 


After the fact my wife explained that she didn't know if the girl would recognize her or not so she was proactively making sure Emma wasn't informed of our presence.


The young ninja returned looking for his golf towel, and finding it jammed into the auditorium door, yanked it unceremoniously out before running back to find his mother.  Leslie made as if to protest and I looked at her askance, "It's his!"  


I think she wanted him to just leave it for a few more acts.


I heard the muffled voice announce Emma's name.  I shushed my wife, who had been joined by one of the "dance moms" we know, and whose own daughter would be trying out with a baton act later.  I motioned them both toward the door.


I heard the music start, and Emma began to sing.  She has a pretty voice, I decided immediately.  At the urging of one of the teachers, she'd changed the arrangement of "Defying Gravity" from the musical version to the "Glee" version, which I think was a good call.  The Glee version is about two minutes shorter than the musical's arrangement, for starters.  She stopped the performance.  She'd gotten off and asked them to restart the song.  I marveled at the easy sound of her voice, no waver, no quaver, no imploring whine. . . just, "Would you please start the song again, I got off?"  The song began again, and this time, no mistake, she was on.  Though there were moments of pitchy twang, those moments resolved and I listened with wonder at how beautifully she sang her part.  It wasn't the version I was used to hearing, it was more up tempo, more pop, less pomp.  Her high notes were falsetto, but her falsetto was pretty, and on the whole I judged that if nothing else, she was the best singer I'd heard in the 45 minutes of tryouts I'd listened in on.


I was so proud of her for getting up in front of the faculty and her peers and singing; singing without expectation of "making it" (as we had drilled into her since she'd decided to audition to help her soften the blow if it came to that), but just singing because she liked to sing and wanted to see if she could make it.  And she has a pretty voice!  At the conclusion of her minute twenty (not sure if the false start counted against her time or not) the applause that filtered out from the auditorium seemed louder than it had for the others, with an actual whoop or two thrown in for spice.  I beamed proudly and probably welled up a little, truth be told.


Emma emerged from the bathroom and saw me in the hall looking for her.  She brightened, yelling, "Daddy!" before scampering over and jumping into my arms.  She was wearing a black dress with white polka dots and a white sweater with silver trim to keep her shoulders warm.  She glowed without a trace of self consciousness when I told her how good she had sounded, and she thanked me genuinely and I put her down as we walked down the hall to find her mother (we'd split up to make sure she didn't make it past us. . . she had somehow done so anyway by getting into the bathroom).  When she saw Leslie she repeated her performance, "Mommy!" before running to hug her.


I was so happy I'd decided to go.  I guess I could have been bummed that we didn't actually see her perform (on the car ride home Leslie asked her if she'd used her hand gestures, sweeping her arm across her body dramatically as she said it, to Emma's eye-roll and nearly inaudible back-seat, "Yes, Mommy," reply), but she was just so happy we'd been there, it was all worth it.  And we'd heard her, and I'd been impressed.


Emma told us that they were going to post the results for all three grades outside the activities office on Friday.  She sounded excited.  I think the adrenaline of the whole thing, along with finding us there to hear her had her amped up, and who can blame her.  "I was so nervous I had to pee!" she confided, explaining why I'd found her in the hall.


I don't know.  I'm just her dad, and must recuse myself as her talent judge, but I really expect her name to be on the list Friday when it's posted. 

Friday, March 16, 2012

10!

My big girl turned 10 today.  She's very literal (not sure where she gets that) and she claims she's not officially 10 until 11:52 tonight.  I told her that legally she's 10 even though she won't have been alive for 10 full years until 11:52 p.m.


Leslie was reminiscing about the day Emma was born this morning.  I'm not sure why I wasn't.  Maybe it's just something that moms do annually.  I think about it from time to time, but for some reason this morning wasn't one of those times.


Leslie had back labor with Emma.  Do you know what back labor is?  Well it's icky.  Emma was shoving her noggin against Leslie's spine and for 30 hours we waited for her to decide to join us.


For 30 hours my wife would fall asleep for 3 minutes, wake up for 5 minutes of contractions, then fall back asleep again.  I was rubbing holes in her back with my thumbs because if I pushed in a certain spot it made her feel slightly better.


"Rub harder," she said, her voice a ragged hiss, the tone trailing into a whine.


"If I rub any harder I'm going to puncture the skin," I replied, rubbing harder.


And then she'd fall asleep and I'd crack the knuckles on my hand, flexing my fingers tiredly and lay back, shaking my head at her ability capture sleep so deftly and nod off myself for a minute or two before the "machine that goes ping" would ratchet back up in intensity, signalling a new set of contractions and I'd mobilize my thumb for spine penetration duty.


Some time after she finally opted for the spinal (which was like the hand of God descending upon her removing all pain) and they readied us for the C-section, we could see St. Patrick's Day approaching.


"Can you hold off a few more minutes so we have a St. Paddy's Day baby, Doc?" we asked.


"No," he said flatly.  And so at 11:52 p.m. (possibly 11:51 p.m. . . I swear I'll change this entire post if it turns out I got the time wrong just to make it seem like I didn't) Emma was delivered.


I stood at Leslie's head as she was crucified to the operating table during delivery.  I'm not kidding.  Probably you already know this, but they strap your arms down.  So she sat there, receiving . . . something. . . through an air mask, unable to move her hands, with an itch on her nose.  My job was to scratch that itch.  Even the one *shudders* inside her nose.


"The baby's here.  You can stand up and look now," the nurse said.


I stood up, expecting to see the nurse holding my daughter for inspection, but instead seeing her head penetrating an incision in my wife's abdomen like the alien bursting from Kane, and I sat back down, probably looking a little pale.


"Yeah, she's not quite here yet."


Strange, and almost surreal.  Emma was born but was not yet Emma.  We were stuck between a few names.  She was Baby Girl W, with Hannah Abigail, Madelaine Patrice, and Emma Katherine all jockeying for position.  I wanted her to be Hannah, Leslie wanted her to be Madelaine.


How to describe my feelings upon first seeing and holding Emma. . .It was surreal.  It feels like a betrayal to say this, but I didn't immediately feel a connection.  Who was this baby?


It was like the first time seeing a DJ after hearing his voice for years and getting a mental image in your head of what he looks like, or reading a novel and then seeing the hero on the cover of a sequel.  The artist's image wasn't what you'd imagined.  It's jarring.  And yet you know your image of what that person looks like cannot realistically be accurate.


Emma was not the picture I had in my mind.  I'm not saying she wasn't a beautiful baby; she was.  But I immediately was struck by this weird disconnectedness. . . I had a nine month image of what this baby would look like, and she didn't look like that image.  I immediately worried that I wasn't going to feel a connection with this baby ever; that I wouldn't love her the way a father is supposed to love his daughter.


I had only ever heard of the instant bond, the instant connection, the greatest day ever. . . nobody had ever told me to expect this.


Not to spoil the suspense or anything, but I needn't have worried.  After that initial surprise/disconnectedness/whatever. . . Emma took root in my heart and changed me.  She changed the way I feel about life and children and myself as a man.  She changed everything.  I'll come back to that.


They wheeled Leslie's mobile bed/OR table back to the palatial birthing suite with its hardwood floors and pull-out sofa bed, and put Emma on Mommy's chest.  Leslie couldn't keep her eyes open and her arms were shaking from coming off the anesthesia.  We couldn't get her named before Leslie was passed out.


She woke up a couple hours later and we called for the nurse to bring Baby Girl W in.  I don't remember if we named her then.  It felt like unfinished business to me at the time, but I can't remember if I was antsy because we didn't name her before they took her off to the nursery, or because we didn't name her when the nurse brought her back in the second time, but we both knew she was not Hannah; was not Madelaine.  She was Emma.  Beautiful little blue-eyed baby Emma.


And things would never be the same again.


A year or two later I read Anna Kareninna, by Tolstoy.  I was in a "read the classics" phase, and didn't want  to deal with "War and Peace," but wanted to knock Tolstoy off my classics bucket list.  I read in that book, for the first time, a similar story of another father's candid reaction to his son's birth.  It made me feel like less of an oddity.  I don't know if I've ever told anyone how that first moment scared me; how I wondered what kind of father I could possibly be that I didn't immediately feel some connection.


While I didn't feel the disgust. . . I thought Levin's reaction was at least "honest" and I remember thinking maybe it's not just me:
"Kitty was alive, her agony was over. And he was unutterably happy. That he understood; he was completely happy in it. But the baby? Whence, why, who was he?… He could not get used to the idea. It seemed to him something extraneous, superfluous, to which he could not accustom himself."
. . . " Levin, looking at the tiny, pitiful creature, made strenuous efforts to discover in his heart some traces of fatherly feeling for it. He felt nothing towards it but disgust. But when it was undressed and he caught a glimpse of wee, wee, little hands, little feet, saffron-colored, with little toes, too, and positively with a little big toe different from the rest, and when he saw Lizaveta Petrovna closing the wide-open little hands, as though they were soft springs, and putting them into linen garments, such pity for the little creature came upon him, and such terror that she would hurt it, that he held her hand back."
And again here you see the softening change:
. . . "Look, now," said Kitty, turning the baby so that he could see it. The aged-looking little face suddenly puckered up still more and the baby sneezed.  
Smiling, hardly able to restrain his tears, Levin kissed his wife and went out of the dark room. What he felt towards this little creature was utterly unlike what he had expected. There was nothing cheerful and joyous in the feeling; on the contrary, it was a new torture of apprehension. It was the consciousness of a new sphere of liability to pain. And this sense was so painful at first, the apprehension lest this helpless creature should suffer was so intense, that it prevented him from noticing the strange thrill of senseless joy and even pride that he had felt when the baby sneezed."
And during the first few hours. . . I felt that same weird disconnected feeling and panic and worry.  Levin's reaction, while different, was enough like my own that I took comfort from it.  It's still dicey talking about it, because, like I said, it feels like a betrayal.


But again, I needn't have worried.  Sometime between naming her and holding her, in feeling her warm little body resting against my chest she took root and the flower that bloomed changed my world.  I became a ridiculous puddle of a man, tearing up at Polaroid commercials and unable to watch television shows that depicted the suffering of children.  Once I left the room during a CSI episode where a father had left his baby in a car to die.


"If you're watching that, I'm going downstairs," I told Leslie, sanctimoniously, and she rolled her eyes and turned the channel even as I stood at the door, poised to leave.  It made me physically ill.


I was watching a Jet Li movie. . . JET LI! . . and the bad guy killed his daughter, and I was running on the treadmill (about Emma's age at the time of the movie). . . and I my jaw just dropped, and I shut off the movie and said "Fuck you," and got off the treadmill and didn't return to the movie (or treadmill) for a week while I. . . what?. . . mourned?


And the more time I spent with Emma the more time I wanted to spend with her, and when I leave my family, her love is like a bungee strap stretched taut, that I NEED to snap back to.


So Emma turns ten today.


The day before yesterday I went to kiss her goodbye when I dropped her off at daycare and she turned her head away.  I cocked my head at her and whispered, sotto voce, "do you not want to kiss in front of the other kids anymore?" and she just looked at me and smiled, and, uncertain how to interpret that, I smiled and kissed her forehead instead and hugged her and told her I loved her and left, sad that perhaps she was approaching "That Age", where her fear of her peers' opinions starts molding her childlike innocence into jaded adolescence.


I've always known that day was coming.  I've made my peace with it.  But I'll remember it.  Maybe my parents can remember when I started turning my head, no less in love with them, but embarrassed by what my friends might think.


But even while she leaves daddy's girl behind, I'm still so proud of the young lady Emma has become.  And while she has her moments of whiny selfishness, she's mostly just a good kid with a lot of grace and poise, a great sense of humor, and a healthy dose of self-esteem.


Monday she's going to try out for the 4th, 5th, and 6th grade talent show.  Apparently it's pretty cut throat.  Some of her friends have already decided to back out because they don't think they'll make it past auditions. Emma will be singing "Defying Gravity" solo.  No chorus class.  No vocal training.  She just has a pretty voice and wants to sing, and isn't afraid to stand up on stage and just do it, come what may.  She knows she may not make it to the show itself.  If you don't understand how proud of her that makes me let me speak more plainly.  I am so proud and amazed by this.  Defying Gravity?  Are you fucking kidding me?  Have you heard that song?  Solo?  In front of her peers and faculty?  Who raised this kid?


The pride helps soften the blow that maybe she's getting a little too old for good bye kisses.  The next night I let her know that if it made her feel uncomfortable we can just hug and that it won't hurt my feelings.  She shook her head, and said no, it didn't make her uncomfortable, but she's very sensitive to hurting people's feelings, so I just said, "okay. . . " and let it drop, unsure of where she stood.


I dropped the girls off at daycare this morning.  We carried a bag of cupcakes to share with her class as a birthday treat and she went downstairs to the "big kids room" while I took Lily up to her room.  I got Lily situated before I climbed down the stairs to give Emma her hug goodbye.


Emma turned 10 today.  She's getting almost too old for good bye kisses from her Daddy in front of her friends.  Almost. . . but not yet.  


*kiss*  


"Happy birthday, Emma, have a great day at school.  I love you," I told her, hugging her tightly.


"I love you too Daddy," she said, oblivious to all the drama going on in my head and heart, and I left the daycare and drove to work.




First Penguins game
Helping around the house
Goofy, with her nose-warmer
Shining on stage

Sunday, March 11, 2012

Ack! Guest Post!

I wrote a post for Jillsmo's "All Kids Do That" Series. 


I remember when Jillsmo first started taking volunteers to write a series of posts about "things that all kids do".  The premise (as *I* recall it) was the well-worn path to pissing off a parent of an autistic child, namely, marginalizing the behaviors by invoking the phrase, "all kids do that".


I remember thinking at the time that I didn't find that phrase as triggering as many parents seem to, probably because my oldest daughter, Emma, despite not being on the spectrum, *HAS* done some of the things that Lily does. 


I remember thinking how picky an eater Emma is, or her spitting incidents at school, or even some of her really brief phases with "no!" or potty accidents or whatever.  


I remember feeling like I really didn't have anything to contribute to the discussion because I've read a lot of autistic parent/autistic adult blogs and sometimes feel like our struggles raising Lily are mild by comparison.


I wasn't sure I was really "feeling" the subject matter.  


And then the first post arrived, and I dutifully read it, because I dutifully read anything Jillsmo sees fit to post on her blog since it's invariably either funny or heartwarming or informative, or some combination of the three.  And it was a post about picky eating by Sunday, at Adventures in Extreme Parenting.  Here's the post:  http://yeahgoodtimes.blogspot.com/2011/12/all-kids-do-that-part-1-picky-eating.html


In a nutshell, on advice from her pediatrician, she implemented the (parents of picky eaters will know this strategy) "When he gets hungry enough he'll eat" strategy.  It's what parents of NT (neurotypical/typically developing) kids do when they're at their wit's end.  It's what pediatricians say will always work.  It's what grandparents shake their heads and say to their children as they watch them struggle to feed their grandkids.  


And five days later he still had not eaten.  Anything.  It's NOT the same.  


And I found myself standing in the kitchen last week, irrationally irritated with my mother as she responded to a tidbit I'd mentioned about how autistic kids generally tend to have niche foods that they don't stray too far from with, "all kids do that", or some variation of that theme.  And I remember responding tersely and irritatedly, thinking of Sunday's post, "It's NOT the same."  


And I realized that she was just voicing something I had myself thought even a few months prior. . . it's variations on a theme. . . some kids ARE picky eaters.  But then I thought of my OTHER picky eater.  Emma hates new foods.  She'll cry if she has to try something when she's not given enough time to come to terms with it.  She once threw up when I forced her (I learned not to do this) to take a bite of roast chicken.  But we talked it out.  We can get her to eat.  Lily pretty much eats on her terms.  It IS different.


Sorry mom, I guess "all kids do that" DOES bother me now.  Thanks for helping with my self-realization.  I know you how much stress we go through making sure Lily gets enough to eat.  You just sorta got blind-sided by the reaction.


Anyway, back when I really felt like I couldn't contribute to the series, Jillsmo suggested "spitting".  I mulled it over and agreed, but didn't really have a timetable in mind, and sort of blew it off altogether until she dropped a quasi-reminder-guilt trip at my doorstep on twitter.  


So I wrote the attached installment for Jillsmo's series, "All Kids Do That":


Friday, March 9, 2012

Special Needs Ryan Gosling




For about five weeks now, Sunday over at Adventures in Extreme Parenting has posted pictures of Ryan Gosling uttering supportive special needs lingo in a "Special Needs Ryan Gosling" meme that has swept the special needs blogosphere.  And for about five weeks now I've told her I find this meme sexist and demeaning to men.


Not really.  I mean. . . I've really been telling her that, but I don't really find it sexist or demeaning.  It is a hard truth for a daddy parent blogger that your parent blogger peers are 95% women.  As such I'm not invited to participate in the "Circle of Moms", or "Blogher", "Sits Girls" or "Bloggy Moms" circles that moms utilize to spread awareness about their blogs.  But I'm not bitter.  Like the groundbreaking male bloggers who went before me, I'll just have to work twice as hard to get half as much exposure as my female peers.  It's hard being a man blogging in a woman's blogging world.


But enough about my daily struggles against sexism.  The meme is pretty friggin' amusing (btw, I said "friggin" last night and the audible scandalized gasp that my almost 10 year old daughter Emma dramatically uttered was classic) and I invite you to link through the various participants you'll see on Sunday's page to see what THEY think Ryan Gosling might be saying if he were your significant other. . . or you!


So today. . . my participation:




Thursday, March 1, 2012

The Greatest Blog Ever Posted - by me.

I know it's early, but the Olympics are coming.  They've already started advertising them.  Emma has already said, "We're going to watch the Olympics EVERY NIGHT," which I think she'll find tedious at some point, but more power to her.


The Olympics are coming and my children are training.  


There's the pommel horse:

Pardon the devil eyes.
Arms. . . getting. . . tired. . . 

The rings:




The balance beam:
Does this angle make my nose look big?
It DOES it makes my nose look big!

Why didn't someone TELL me?
Lily. . . laughing at my big nose.


And various sports not currently included in the official Olympic games but CERTAIN to be considered for future Games.


Stairplay (formerly called Competitive Badgering):


and finally. . . King of the Balance Beam Mountain Wrestling:


Alright, alright. . . maybe it's not the greatest blog ever WRITTEN by me (from a compositional standpoint, I mean), but there are certainly several excellent points in favor of it being the greatest blog ever POSTED by me:


1)  Lots of pictures and videos of children having fun.  And I know they're not your children, but they're cute, and the title does say "by me" after it.  And really, you look at your children all the time.  Aren't you bored with that?  Look at mine.


2)  Not a lot of words to bog you down.  Sometimes I get a little. . . verbose.  It's nice to have a break from all the words.


3)  No doom or gloom.  Just having fun.  With children!!


4)  Patriotic Olympic Theme.  It doesn't matter whether you're from my country or not. . . who isn't patriotic when it comes time for the Olympics?  I promise there are no USA!  USA!  Chants in the videos, so you can just picture your countrymen (and countrywomen) standing on the podium.