Tuesday, February 26, 2013

Backyard Camping

It's been a while since I've told an Emma story.  This happened after she finished her "CLO" camp performance (musical theater camp) when she was 7. It was summer, and she promised me (/I promised her) backyard camping for Father's Day.  I wrote this then, but never really shared it.  I spent the last couple days sketching pictures to go with it so I could post it...in accordance with prophecy (you'll learn all about the prophecy in next week's Childswork post).

Without further adieu...

Camping:  Chapter 1

She was seven.  She finished her performance to the cheers and standing ovation of the parent-audience. She had been instructed to wear her hair in a "neat" pony tail, which her mother had interpreted as "tight". She'd endured the pulls and pinches and blasts of noxious hair spray in the name of "theater". She'd done well. They all had, and she was justifiably proud. No missed lines, she sang to the crowd, and she hit all her marks. As the lights came up, she scanned the crowd for her parents, found them immediately and beamed. They beamed back, still clapping, as her instructor called for their attention and announced a cast "photo op" for the parents. She lined up with her friends on the steps leading up to the stage and sat, flashing a sunny smile, excitement in her bright blue eyes. Pictures were taken, and then they were ushered back stage to collect their things and meet their parents out front.

She again waited in line; her instructors let her out the back door so she could collect her street clothes, in a baggy marked "Emma". They were not where she put them.

"Emma! Over here, honey!" she heard. She looked up to see her father holding flowers and waving to her, holding a bag in his other hand.

"I have to get my clothes!" she called back.

Her father looked at her, eyebrows raised, and gestured toward the bag with the flowers in his other hand, "What do you think this is?"

"That doesn't look like the bag they were in," she said, walking to him, but he showed her the label on the bag, as well as her clothes inside and with some relief she jumped into his arms to be squeezed tightly and lifted from the floor as her father praised her performance. 

For Emma though, the performance was over, in her mind now was "camping" and "s'mores" and she was impatient to leave the theater and buy marshmallows. 

"Daddy," she said, "can we go to the store now and buy the stuff?"

"FIRST we have to eat dinner, honey, then if the store's still open, we'll buy stuff for s'mores. If not, you're going to have to make do with popcorn," he replied, putting her down and handing her the flowers.

This seemed perfectly acceptable to Emma, who loved popcorn. Though she'd wanted to try the s'mores, if she had to 'settle' for popcorn, well then she'd make do.

Her mother and her grandparents were waiting just behind her father, and he held her hand and walked her out to see them. The next fifteen minutes were an unending stream of repetitious questions and comments: had she liked her teachers, would she do it again next year, did she meet any new friends, you looked beautiful onstage, you did great. . . and on and on. It's not that she wasn't appreciative, or proud; she was, but WHEN was she going to get to go camping?

She was given her choice of restaurants for dinner, and she unhesitatingly selected Monte Cello's. She quickly added, however, that she wasn't all that hungry, and maybe she could just eat a couple pickles? Because, let's face it, how long could it possibly take to eat pickles and then get out of there to go camping?

Her mother and father split up as they left the theater, each having come directly from work, and she decided to go with her father. They walked through the city, tall buildings all around them. They walked down the alley to the street, her father motioning her to hold his hand when they reached the sidewalk. He held tightly to her hand and directed her past an unsavory looking man in a dirty black suit swaying unsteadily, glassy eyes looking out at nothing under the brim of a faded bowler hat. He had a long white beard streaked with gray and he was singing softly to himself, perhaps accompanying the band that she could hear inside. As they walked past him, she turned to watch him before her father snapped, "Em, don't stare, honey, it isn't polite." She quickly looked ahead and again asked her father if they could stop at a store on the way to eat and pick up the s'mores ingredients.
"First we eat, THEN we shop," he answered. She sighed disappointedly but kept up with her father's brisk gait. 

In the elevator at the parking garage, her father let her push the button to the third floor and she remarked, "This is a small one."
"Did you see all the people that just got out of it?" he asked her, "How do you think they all fit in here."

"I guess they must have squished," she replied as the elevator chimed and the doors slid slowly open. Her father held her hand and pulled her back as she made to leave the elevator. The woman who had rode up with them, walked out, and her father nodded to her that it was okay to proceed. She immediately saw his car and they got in. She sighed loudly as she sat in her car seat, the warmth of the car flooding over her.

"You cold, hon'?" he asked her.

"A little, but mostly my legs are just tired."

"I guess they would be; you've had a very long day."

They drove out of the city, racing her mother to Monte Cello's. She thought they'd probably beat her, daddy drove a little faster than mommy did, but her father told her that mommy had a head start. They arrived just as her grandparents got there, which was a good sign, since they'd left long before either of her parents.

Victory! They'd beaten her. And now pappy was getting a table and he hadn't even seen them. "Let's hide from pappy and surprise him!" she said. Her father smiled at her and they sat down out of sight while her grandfather was shown to his table and her grandmother went to the bathroom. They got up and followed silently after.

"OH!" Pappy said as they appeared at the table, "I didn't see you there!" Emma slid into her seat and got the crayons and "kid's menu" as her father shook her grandfather's hand and then slid in next to her. He ordered a Shirley Temple for her as she colored. Her mother arrived. Dinner would most likely never be over. 

They ordered. She got pickles but her mother bargained her into eating cheese sticks too "at the very least" as her grandparents shook their heads, amused at her dinner.

The wait was interminable. They ordered drinks, the drinks came, they ordered food, the food came, the food was eaten, wine had to be finished. At each new milestone she interjected a friendly reminder about finishing up and going shopping and was rebuffed. She was practically shaking with impatience and knew she was on the ragged edge of "trouble" and then her father whispered something to her mother. Her mother replied, "Yes, please take her!" and it was over. The wait was over.

"Are we going shopping now?" she asked her father excitedly.

Her father let out a long breath, his eyes closed. Then one side of his mouth curved into his familiar lopsided grin and his eyes slowly opened and he breathed, "Yes, honey. NOW we are going shopping."

She squealed quietly (in her opinion) and held her father's hand as he led her back out into the parking lot. 

Camping:  Chapter 2

They drove perhaps two miles to the store. It was the little Shop 'N' Save that she didn't like, but as long as they had stuff to make s'mores she didn't care.

"Hop out, kid," he said, "we're here." He held her hand in the parking lot and directed her through the slowly parting doors of the entrance.

Her father guided her first down the baking aisle, looking for marshmallows. He retraced his footsteps several times, but, muttering "huh," under his breath, eventually led her, empty-handed, to the candy aisle. There, he grabbed two of the biggest Hershey's chocolate bars she'd ever seen and handed them to her to carry.

"Daddy, these say 'milk chocolate'," she observed.

"Yeah, that's what you make s'mores with. They're yummier." She nodded happily at this news. 

The graham crackers were in the same aisle, and her father hunkered down to observe the different boxes.

"This one says honey graham," she read, "I don't think we should get those."

"Yeah," he replied, "but it has the s'mores recipe on it and this one, " he gestured with the box at the 'Plain' graham crackers', "doesn't."

"Then we should get the honey grahams," she opined, and her father nodded.

"I couldn't find the marshmallows, so we'll have to ask somebody," he said.

"Here they are, daddy," she pointed.
"Huh! You're absolutely right, Emma. Good eye. Grab them, please, and let's go." 

She did this, returning the chocolate bars to her father. They made their way to the check-out line and paid, the chocolate, marshmallows, and crackers transferred into a blue plastic shopping bag.

"Daddy, can I hold the bag?" she asked. His eyebrows raised slightly in surprise, but he smilingly transferred ownership of the bag to her. 

She sat with the bag resting on her lap as they drove home.

When they got home, she hurried inside the house, excitedly telling Jen (her idol/dance instructor/occasional babysitter) that she was camping and making s'mores. Jen, who had been watching her little sister during her performance was satisfactorily impressed and excited for her, and gave her a big hug to welcome her home.

"Where should I put the bag, Daddy?" she asked.

"Put it on the counter for now, Em, and go upstairs and change into your warm jammies. And put on your slippers, please."

She must have been a little quicker than her father expected, because he said, "Em, I thought I told you to. . ." 

He glanced up, saw that she was wearing her pajamas and finished lamely, "put on your jammies. . . which you have clearly already done. Good girl."

Her mother paid Jen, and she listened while Jen relayed Lily's evening, occasionally offering her own insights into Lily's amusing approach to life.

Her father went outside, erected the tent, put down a blanket, and rolled out the sleeping bags. He finished and came back inside in time to say goodbye to Jen.

"Now what?" Emma asked.

"Now we collect some wood for the fire," he replied.

"Can I help?" 

"Sure, but you have to wear your slippers."

She happily agreed and accompanied her father outside. They'd had a big old elm tree removed and all the limbs and branches had been left in the wooded hillside behind their house. He selected three long narrow switches, pulling a knife from his pocket, and cutting a point at the narrow end.

"What's that for?" she asked.

"THAT, dear girl, is what you're going to use to roast your marshmallows."

When he'd finished, he put the switches down and began selecting twigs and branches to start the fire, putting them with the marshmallow-roastin' sticks. "Can I carry those to the fire pit?" she asked.

"Yeah, Em, that's a great idea," he said, and she began gathering what she could carry as her father began picking larger and larger pieces of wood.

As she placed the branches in a pile near the fire pit, her father was walking down the hill to join her.
"Some of this wood is a little wet," he said, "it may not burn that easily."

"How can wet wood burn?" she asked him.

"Well, if you make the fire hot enough, the water will evaporate and the wood will catch, but you need some of the wood to be dry."

She gave a start as he snapped a branch across his knee with a loud crack. "You scared me," she said.
"Sorry, kiddo, I have to break the bigger ones so they're short enough to fit in the fire pit." He began piling the twigs like a teepee in the middle of the fire pit, stripping bark from limbs and shredding it underneath and around the twigs, then adding larger branches the taller the teepee got. When he'd finished he stood upright, put his hands at the back of his waist, grimaced briefly, stretched his back and said, "Now we light the fire."

He took a piece of paper, rolled it into a tube, and lit the end with a match. Then he held the tube like a torch under the teepee, moving it around to catch more twigs. When the tube started to burn down, he rolled another, lit it with the first tube, and tossed the burning paper of the first into the pit. Halfway through the second piece of paper, the twigs were ablaze, the sticks were lighting, and one or two of the bigger branches had caught. 

"Aright, cutie-pie," he said, "we're almost ready." He rearranged a few of the branches, blew into the fire a few times, added a few larger branches, paused, squinted, blew into the fire a few more times then stood and announced, "We have a fire."

Camping:  Chapter 3 
The wood smoked at first but it wasn't the kind of smoke that stung her eyes. Her father told her it was because the wood was a little wet. She asked if they could make the s'mores now, and he told her yes and sent her inside to get her mother.

When she came back outside her father had arrayed chairs around the firepit and had a marshmallow stick next to each chair. She was still waiting for her mother to come out, so she sat in one of the chairs next to her father and pulled her knees up to her chin, staring into the fire.
"I like watching the fire," she said dreamily.

Her father smiled and said, "I do too, honey. I think most people do."

Her mother came outside and took the empty seat, crossing her legs, as Emma explained, "These are our marshmallow sticks."

Her father went inside briefly and came out with the chocolate, broken into squares, and the graham crackers stacked on a plate. He held the marshmallow bag in his other hand. As he walked outside, he hooked the door with his foot to swing it closed behind him, then transferred the bag under his chin so he could reach down and pull the door completely closed with his hand. He set the plate on the ground and opened the bag. The marshmallows were sticky and a little moist, but he pulled them apart and skewered one at the end of her stick, handing it to her before repeating the process for her mother's stick, then his own.

"Here," he said, "is how I roast marshmallows." He sat in his chair next to hers and held the tip of his marshmallow capped stick a few inches from the flames, rotating his stick slowly as he did so like a rotisserie. "Do NOT worry if your marshmallow catches fire," he continued, "and do NOT cry. You just pull it out like this…”  He pulled his marshmallow to his face, "Blow it out. . . "  He blew on the unignited marshmallow, "Wait for it to cool, then eat it. It just makes the outside a little crispier than you might like, but it is NOT the end of the world."

She nodded her head in understanding and advanced her marshmallow. "Like this?" she asked.

"Exactly like that," he agreed.

Her father was done first and offered to donate his marshmallow to her first s'more. She refused politely, wanting her first s'more to be made with her own marshmallow. He blew on the marshmallow a bit, then gingerly plucked the entire marshmallow from the stick with his teeth (if in fact one CAN gingerly eat a marshmallow in one bite), plopping the whole thing in his mouth, then sliding the stick back out past slightly parted teeth. 

"That was a good one," he said.

He placed his hands atop hers and gently lowered the stick until it was a bit closer to the fire, then re-loaded his own stick and continued. 

Her mother finished next and handed her stick to her father to make the s'more. 

"Let's have a look at that marshmallow, Em," she said, and Emma showed it to her. "Just a little more time," she said and Emma put it back near the fire, this time a little closer.

"I think you're done, princess," her father said, peering into the fire a minute later. "Let me see." She handed him her stick and he pronounced the roasting complete. He took a graham cracker, placed a square of chocolate atop it, and then lay the stick with the marshmallow on top of that. Then he took another graham cracker, placed it on top of the marshmallow and, using his left hand to squeeze the sandwich together, pulled the stick out with his right. The resulting s'more he placed into her outstretched hands.

She took a bite, marshmallow oozing out the sides and onto the corners of her mouth. She held the s'more daintily, and when she had finished chewing asked for a napkin.

"Napkin?" her father scoffed, "We're camping! There aren't any napkins!" But he went inside the house and returned with a napkin for each of them.

She liked the s'mores, but she had never had a big appetite. Two bites later she announced that she'd finished what she wanted of her s'more. Her father had just finished his own, and, looking up to see the shaking head of her mother, and the raised hand warding it off, accepted it for himself with a somewhat sick look on his face. If he was too full to eat though, he valiantly finished it nonetheless.

Her father built the fire up a little more then, adding some scrap pieces of pine that he and her grandfather had used to fix things in the house. The pine caught quickly and blazed yellow white, sputtering and popping. And Emma held her hand over her forehead where it was getting too hot, and asked her father to push her chair back from the firepit, which he did by picking up the chair, with her in it, and sliding it back a foot from the fire.

"Why does it spit like that?" she asked.

"Those pieces I just put in are pine," he said, "and pine has lots of sap in it. The sap pops when it's in the wood and catches on fire." Another loud pop from the fire scattered embers and her father stood up and put the screen over the fire pit. "Okay... no more pine," he said.

The fire slowly began to dwindle. It was past twilight under a cloudless sky. They watched the fireflies descend from the hillside, winking on then off, then on again somewhere else, trailing green light. The stars were swimming slowly into view and the night air was cooling. 

Her mother excused herself and went to bed, exchanging hugs and kisses. This was Emma's night with her Daddy, a belated Father's Day present as much for him as for her, and she gave her mother a kiss goodnight and asked her father if she could get in the tent.

"Sure," her father replied.

"Can I take the lantern?"

"Absolutely," he said, switching it on and handing it over to her.

She carried it off across the lawn, the light bobbing into the darkness of the tent. She unzipped the outer flap, then the bug screen and went inside zippering it up behind her.

The fire burned itself out. Her father joined her in the tent, sending her back inside the house to brush her teeth and go to the bathroom. He walked inside with her to get water for them both. When she was finished he told her to get one book for her to read, and one for them both to read. She scampered upstairs to her room while he got his own book.

Together they went to the tent, zipping it behind them. They sprawled out on the sleeping bags and Emma said, "Let's read in our special way." And they turned over on their stomachs, propping themselves up by the elbows, with their books resting on their pillows.

"This is the best night ever," she said, "I will never forget this as long as I live!"

"I'm glad you're having fun, Em," he replied. 

They read together in silence. "I've read three pages already," she confided.
"Good job, Em," he said, turning his own page.

"How many have you read?"

He raised his brow at her and said, "One."

"Do you want to play the Eye Spy book?"

"Sure, honey. We'll do two pages then go to bed."

"Okay, daddy."

She picked a page and he picked a page. They saved hers for last. When they'd finished spotting all the hidden objects she said her prayers and they turned off the lantern. She told him again that she'd never forget this night, and he squeezed her tightly and told her he never would either and that he loved her, and they fell asleep at last, ending her long day.

Monday, February 25, 2013

Autistics Should Flash Blog

Over at Childswork today I wrote about this Saturday's multiposting (flashblog) to overcome negative google search results.  If you don't know what I mean, take a gander over at the post:

Austistics Should.

It's still open if folks want to contribute to the cause (I'll sum up...if you type autistics should, or autistics are in google, it helpfully fills in the blanks it thinks you might want to type next...like Austistics should..."be murdered".  Yeah, it's that horrible).

And now, having just decided to search "autistic kids should" and "autistic kids are"...the results are essentially the same.  Why are people such idiots?

Monday, February 18, 2013

Empathy: I'm Doing It Wrong

Today over at Childswork I'm talking about empathy.  

If learning things the hard way is the most effective way to learn something for good...then I should be an expert at this by now.  But I'm not.  I find myself constantly misreading situations and not being sensitive when sensitivity is called for.  Today I'm writing about some of things I struggle with where empathy is concerned, and ways to get better at it.

Monday, February 11, 2013

We Fit.

No....not Wiifit, WE...FIT. My wife and I. A Valentine's Day post over at Childswork.  Taking a break from autism (the topic, I mean) to reconnect with my wife.


Wednesday, February 6, 2013

Interview with a Unicorn

How did we come to be in front of the camera?  Well, it started with the University of Pittsburgh.  See, they’re doing a study on the effects of environment on the prevalence or symptoms of autism in the surrounding area.  Apparently Pittsburgh is quite a little hotspot for it, and so this study is geared toward…well…something about the environment...in their words, "The Research Study of Environmental Risk Factors for Childhood Autism is a multi-year study which began in 2010. It is being conducted in southwestern Pennsylvania (Allegheny, Armstrong, Beaver, Butler, Washington and Westmoreland Counties) by the University of Pittsburgh's Graduate School of Public Health. The aim of the study is to help identify environmental and other factors that may put children at risk for developing conditions within the ASDs."  See more here, "Study of Environmental Risk Factors for Childhood Autism"

They're making the stretch run, trying to drum up additional interested participants to complete their study, and so they've approached the local news channels, and presumably they're whoring it up a little with some local ‘eye candy’…to humanize it; put a face or faces to the story.  They approached a local autism charity bigwig in order to troll for potential interested eye candy...er...parents.  First one network, then another, as they scrambled to put a more human face on an academic story.  And more specifically, they approached a friend of mine, Jennifer, whose autistic son goes to school with Lily.  And she and her family agreed to do an interview with WTAE. 

A day or two later, we were approached.  Were we interested?  Did we want to be interviewed by the local network?  I wasn’t so sure.  I don’t really have my head wrapped around what I think the environment has to do with autism, so I deferred to my wife who was interested and our family agreed to do an interview with WPIX.  Leslie had only to work out the details with the station.

But before this courtship could manifest itself, I messaged my friend, Jennifer, and gave her a mission to fulfill.  Her job:  At some point during her interview, say, “Iguana”.  She laughingly took up the gauntlet.

Back home (Leslie was off that day) WPXI was scrambling to get the interview with Leslie scheduled prior to WTAE’s interview with Jennifer's family.  They wanted it done that night.  But it wasn't to be.  We scheduled our interview for Monday at 3:00.

Over the weekend, Jennifer and Leslie saw each other at an All Abilities Fair in the local mall and compared notes.  Jennifer sent home one word with Leslie:  “Unicorn”.  I laughingly took up the gauntlet.

We talked about how this would be accomplished "seamlessly" and Leslie said something about just saying "Lily likes unicorns".  Just...you know...blurting it out.  Or, she said, perhaps just put a unicorn head in the background.  That sounds sillier than it is, since we actually have a unicorn head in-house.  Not everyone has a unicorn head.  Regardless, Emma and I felt her approach lacked subtlety and possibly I mocked it, imagining it would play out like this:

Reporter:  So, Mr. and Mrs. Walter, can you tell us a little about yourselves?
Leslie:  UNICORN!!!!!

Please lord, stop mommy from screaming
"Unicorn" at the nice reporter.
And so we thought about it over the weekend, and one night as Emma and I snuggled after her prayers were finished I offered this last little bit to God...

"And please Lord, stop Mommy from screaming "Unicorn" at the nice reporter." Emma giggled.

I brain stormed a few ideas, but honestly wasn't sure how I'd get it in there.  

The day of the interview, I took a half day off work and came home early to collect the kids from school.  Leslie hadn't been sure she'd make it in time, but by the time I reached Emma's school, she'd gotten home and so collected Lily herself.  WTAE was interviewing Jennifer's family at 2:30, so we'd be able to compare notes on how it went immediately afterword. 

When the crew arrived (producer who asked questions and camera man) they interviewed us first and we sent Emma downstairs to entertain Lily while we fielded their questions.  We were mic'ed and sat at our kitchen table.  They asked us to spell our names and then they began the interview.  I imagine the different and important things we wanted to cover running through our minds at that moment were probably...

 And then the interview was on and we were talking, and the more we talked the more natural it seemed, and then without even really knowing what I was about to say I found myself talking about acceptance:  Acceptance of Lily and autism and our lives together, acceptance of the future and with its uncertainty, planning for the worst but hoping for the best, and how we were in a good place with it...and then...
What the...why not chase me?

"...and we're no longer chasing the unicorns of autism cures or desperate questionable treatments and are just enjoying Lily for who she is."

Nailed it.  

And Leslie got a big smile on her face and told me later she had stifled the urge to nudge me under the table and giggle, and the interview went on.  

We talked for about 20 - 30 minutes, and then they brought the kids into the room, mic'ed Emma, and filmed the two of them interacting.  Lily was on fire (not literal fire, no children were harmed during the filming), because she was being so good with Emma and was so responsive, so I think they probably got some cool footage of the two of them.

As they set up, I grabbed a couple quick pics so I could send them to Emma to show her friends.  And then just as quickly they were tearing down and putting away and thanking us for our time and telling us they'd be in touch and they were out the door.  They were very polite and friendly. 
Leslie putting the mic on Emma.

Roll cuteness...
After the dust settled I wondered what they'd take from the interview.  I didn't know how long the finished story would run.  Would it be a three minute segment?  More?  Less?  What three minutes would they take?  Would they include all the positives we had mentioned?  Would they cherry pick only the negatives?  

I guess that's the risk you run when you agree to do something like this, as exciting as the opportunity might seem.  Our bit may be 30 seconds of actual air time from 30 minutes of talking on camera. Will it reference how sometimes autism parents isolate themselves, bullying concerns, being kicked out of church for being too noisy?  Or will it talk about accepting the diagnosis and the child and celebrating the little things?  Will the unicorn make the cut?  We really don't know.  

Hopefully the words they include will be words that we feel comfortable with and that we feel represent us and our voice, but it's out of our hands now.  

Oh, as for Jennifer's iguana? ... 

Well, at least they got their eye candy.

The piece runs during the 5:00 news on Friday, 2/8.  I'll link it here, so check back after Friday if you want to see us...saying...words.  

Here it is:  WPXI - The Walter Family

Meanwhile...the competition posted this:  WTAE - Jennifer's Family

If I'm being objective, I have to say I thought WTAE did a better job covering the overarching concern of much higher autism prevalence in our area, but WPXI got us...you know...so it was a tie really.  In the end the unicorn didn't make the final edit.  Like I said...30 minute interview...30 seconds of sound bite.

And it wasn't particularly damning, per se, but when you listen to what I say, what you're missing from what I've said is what is immediately after, "If there's something that we're doing environmentally that can be minimized that helps other parents and other kids, all that's great stuff, and that's important," Because what's after that, is a five minute diatribe where I say, BUT...it doesn't help any of the adults and children who currently need supports. It doesn't address what happens when these kids age out of programs and become wards of the state, because not every family has the sort of supports that Lily has.

But that's neither here nor there. The story is this study, and if the story is to look important, then the interview has to reflect the importance of that study to parents of autistic children...not be "Okay, BUT..."

Ultimately, what they really needed was more unicorns.