Monday, December 27, 2010

The End of the World

The tree is gone.  Ryan is devastated.

We started removing ornaments yesterday afternoon, and finished the job while Ryan was asleep.  When he walked into the living room this morning, he stared at the naked tree in absolute horror.  "Back on da tree!  Back on da tree!" he screeched. 

"I know, it's sad," I replied.  "I get sad, too, when it's time to get rid of the Christmas tree.

He found the nearest box of ornaments and started hanging glass balls at his eye level on the comically-bare branches.  I managed to distract him from the Charlie Brown tree with a little pine needle clean-up.

This evening, it was time to take the tree down to the curb; Ryan is now in mourning.  Fortunately, the pine needles strewn around the apartment will provide us constant reminders of our tree for months to come.

Sunday, December 26, 2010

Cleaning Up for Christmas

Ryan totally cleaned up for Christmas.  Sure, he walked away with a ton of toys, but mostly, he vacuumed up lots and lots of pine needles. 



His favorite pastime this holiday season has involved my dragging out the big vacuum cleaner and him using the hose to suck up the needles that have fallen under the tree.  He will also vacuum individual needles from his fingertips, and occasionally see how much of his shirt will fit in the hose. 

When there are no needles left on the floor, Ryan shakes the tree until enough needles have fallen to satisfy his vacuuming needs. 

Consequently, the top 2/3 of my tree is green and lovely, and the bottom part is dead and bare and looks like it's been eaten by reindeer.

But it's been a wonderful holiday season.

We ended up with TWO chairs in our tree!  Thanks to Marcia for the one on the right.




Merry Christmas to all!

Thursday, December 23, 2010

With Blue Sprinkles On Top

Those of you who have been following the adventures of Captain Awesome for a while might remember last year's gingerbread house.  Ryan was into it.  Really into it. It seemed obvious that this would need to become an annual tradition.

This year's gingerbread house is not as richly decorated, but it has provided us with hours of cleaning fun.

I started things off on Sunday by baking a gluten-free house.  Gluten is what generally gives baked goods their structure; this house was structure-free. 

The best parts were the green sugar sprinkles 
and the gingerbread man cookie cutters - far more interesting than the cookie house.  The Little Gingerbread Boy, of course, had to go in the house.
The walls kept caving in, which frustrated Ryan so much he melted down into a tearful, screechy pile on the kitchen floor, demanding I "Fix da gingerbread house, fix da gingerbread house."  I assured him I would try again the next day, but this was thoroughly unacceptable to him at that moment.

Monday, I found another recipe and baked another house.  This one cooked up far more solid - I credit copious amounts of butter.  I glued the walls together with royal icing and imagined the messy fun ahead.

"Hey Ryan, wanna decorate the gingerbread house?"

Once again, the cookie cutters commanded his attention.

I coaxed him into making a half-hearted attempt to stick something - anything - on the house.  He chose toothpicks.
(BTW, re: Cherry Cordial M&Ms: don't waste your calories.  Stick to Pretzel M&Ms.)
Things were coming along slowly and without enthusiasm. And then Ryan found the blue sugar sprinkles. He gleefully went to work on the gingerbread house.

Then he turned his blue sugary attention to the rest of the kitchen. The windowsill. The floor. The counter. The bowl where I was keeping some onions and garlic. The radiator. The chairs.  Everything.

For those of you who are considering redecorating your homes, I can tell you that 2.25 ounces of sugar sprinkles is enough to fully cover one medium-sized room.

Monday, December 20, 2010

Passing for Typical

"I think that's one of ours."  Stu points out a boy in the audience of a Starfish concert wearing large noise-canceling headphones. 

"Maybe," I reply. 

We play this game a lot: try to spot the kids with autism in whatever public space we find ourselves in.  Some kids are easy to pick out - obvious stimming, toe-walking, telltale speech patterns.  I assume we don't spot them all - hopefully some, or most, are able to blend into a crowd.

While playing this game, I try to observe Ryan objectively.  Does he stand out?  Would another mother of a child with autism be able to tag him as "one of ours?"  Can he pass for neurotypical?

Before the concert began, I sized up the kiddie crowd.  Dozens of kids age six and under.  Most of them were standing at the foot of the stage, staring at the lights, talking to each other.  Some were stomping up and down the stairs, or sitting on laps.  Ryan was walking around the theater, taking it all in.  He didn't strike me as unusual; I wondered if others thought the same.

When the band took the stage, Ryan joined the other children standing in the orchestra.  He was in total rapture staring at the lights; actually, he looked a little stoned. (Dude! The colors!)  He alternated between watching the musicians intently and turning his back on them.  The casual observer might think he was checking out the audience behind him, but I know he likes to briefly look away from what he's paying attention to.  I don't know why he does this; I think he enjoys playing with his peripheral vision.

The typical kids were dancing, holding hands, jumping around in a mini mosh pit.  Ryan mostly stood still, taking it all in, too cool to dance, for a couple of songs.  He was blending in pretty well.

Then he started crawling.

He dropped to his hands and knees and crawled through the other children, away from us, until he was intercepted by my cousin Stephanie, who got him to stand up and dance with her for a moment.  He ran a few laps up the center aisle , down the steps, around the seating area, and back to the mosh pit. 

He had me pick him up for a song, then he sat on Stu's shoulders for a song, then danced for ten seconds, then crawled back into my arms and rested his head on my face.  I wondered if this looked within the realm of typical - if sleepy - kid behavior. 

Then he threw himself on the floor and begged us to open the emergency exit.

We took him for a walk outside.  He found ten square feet of trees, which he happily treated like a forest.  I don't (much) care if he may have tripped someone else's AutDar - I was very pleased that he had been able to tell us he needed to get out of there. 

And we later decided that the boy with the headphones was not one of ours; he and his brother - also in headphones - were just typical kids whose father wanted to protect their eardrums from overly-amplified music, and didn't care if he had to make his kids stand out to do it.

Sunday, December 5, 2010

Christmas With A Monkey

I am a Jew, and I love Christmas.  I make no apologies for this.  I was not raised celebrating Chanukah, and I feel no attachment to this holiday; I never even learned the prayers you're supposed to sing when you light the menorah.  As far as I'm concerned, Chanukah is a minor Jewish holiday that has been hyped up to compete with Christmas, and there is no comparison.  Christmas is pretty, with beautiful decorations and fun traditions and music that ranges from silly to sublime; Chanukah has some candles that you can't blow out and a boring gambling game involving a little top. 

As I've said before, I grew up celebrating the pagan Christmas traditions, and I love to share the joys of secular Christmas with Ryan.  I've shown him my favorite Christmas movie - Christmas Eve on Sesame Street - but it seems dated to him, because the characters have changed over the last 30 years (back then, Maria was dating David!  And Mr. Hooper was alive!).



Ryan's favorite Christmas movie is Curious George: A Very Monkey Christmas.  I have to admit it's adorable, and the music is so catchy that we both walk around singing the opening number.  For the last month, one of Ryan's preferred activities is a sort of reenactment of the scene where George decorates his tree.  Ryan will instruct me to draw the outline of a Christmas tree on the largest paper we have.  Before he colors it and covers it with stickers while singing the appropriate song, he insists I make the picture look like Curious George's tree: I must top the tree with a large red ribbon and a chair.

See, in the movie, George picks out a tree at the farm stand - a tree with a red ribbon on top - but he accidentally knocks over all the pre-cut trees, and Bill's folding chair gets stuck on the top of the tree George wants.  The Man with the Yellow Hat can not get the folding chair off the tree, and George will accept no substitute trees, so they go home with the tree as-is.

When Ryan and I went tree shopping this year, it was clear that we would need to get a big red ribbon to go with it.  And as I feared, Ryan has also requested a chair.  I refuse to put a real, full-size folding chair on our tree, so I've been searching for several weeks for a doll-size wooden chair, or a chair ornament, or something small and reasonably chair-like.  I've come up with nothing so far.  I thought between toy stores and craft shops this wouldn't be much of an issue.  I might have an old toy chair floating around my parents' basement somewhere, but I haven't checked there yet.  And I could make one out of balsa wood scraps, but I have not yet hit that level of desperation.

I have to say, Ryan has been pretty relaxed about this whole no-chair-in-the-tree situation.  I expected him to be far more insistent about having a chair, but it seems to be something he'd like to have but doesn't need to have.  This seems incredibly mature of him.

Thursday, December 2, 2010

Back to our regularly scheduled program?

I'm pleased to announce that the bastard has calmed down a little.  I still don't know what made him so cranky - could be his teeth, could be some invisible illness, could be growing pains - but he has stopped throwing himself on the floor at school, and has become somewhat more cooperative at home.

I'm hoping the past few weeks have been one of those steps backward before he takes a big leap forward; that sort of thing happens a lot here, but it rarely lasts more than a few days.  This week, Ryan has done a few new things that give me hope that this is what's going on.  Lately, when a train rumbles past our building, Ryan will actually go to the window and look at the train - he's noticing something that's happening in the world and paying attention to it.  I've tried to build on this by asking "Which way is the train going?" but he hasn't answered yet.

And yesterday, he did something truly unprecedented: he announced, "I gotta pee."  He has never, ever informed me that he needed to go to the bathroom.  This is huge.  This is a call-Stu-at-work sort of event.

So maybe we've just been experiencing the storm before the calm.  Let's hope.  Because now that my derby league is on hiatus for two months, I can't just hit people at the end of a stressful day.  Any more of Evil Ryan and things could get really ugly around here. 

PS - thank you all for your suggestions on how to deal with the Bastard Behavior.  Wine and earplugs are a mom's best friends.

Monday, November 29, 2010

Hello, Strangers

I've been MIA for the last week because sometimes autism sucks.  Sucks my energy, sucks the air out of the room, sucks my patience.

Over the last couple of weeks, we've seen an increase in what I like to call Bastard Behavior.  This means that at the slightest hint of frustration, Ryan will hurl his body into the nearest wall, collapse on the floor, launch into a cascading whine that could grate cheese, and insist that he has hurt himself.  Alternately, he will throw the object that has caused him frustration, then throw himself on the floor to whine and scream.  Lately, this has been happening dozens of times a day.

We used to order him to stand up or urge him to be calm, but now we're just trying to ignore the Bastard Behavior altogether.  It's very hard to ignore.  And sometimes it's not possible to ignore, like if he's throwing himself into a crowd of strangers at the Holiday Train Show, or, say, hurling a large wooden toy through the glass door of my entertainment center. 
Ryan believes I can fix this.  He is wrong.
But we attempt to show him that we are actively ignoring him - I'll make a big show of standing near him while not reacting.  This has not yet made a dent in the frequency or duration of these Bastard Attacks.

I had a faint hope that this uptick in Bastard Behavior was due to his discomfort of having his first two loose teeth.  But the Tooth Fairy came twice last week, and the behavior has continued.


Ryan is very proud about losing his teeth.

He's lucky he's cute, because lately that's about the only thing that's keeping him alive.  I'll be on the verge of killing him, and he'll snuggle up to me and spontaneously say, "I yove you," and I'll melt and let the bastard live another day.

Thursday, November 18, 2010

Greatest. Conversation. Ever.

Ryan and I just had a conversation.

I think it was our longest conversation to date.

I showed him the heating pad I've been using on my knee (the latest derby-related injury). 
I said, "Wanna feel something warm and squishy?"
"Feel something warm and squishy?" He poked at the heating pad.  "What is it?"

Wow, it's very rare he will ask me to identify an object.

"That's a heating pad," I replied.

And guess what he said next?  You won't believe it.

"What's a heating pad?"

Omigod, this is huge.  I explained the purpose of a heating pad.  He continued to examine this new object.

"Open it?" he requested.

I explained that it doesn't open, and then his attention shifted to something else.

So let's mark this officially:  Age 5 - Ryan asks what an object is and what it's for.

Monday, November 8, 2010

Hit or Miss

Planning activities with Ryan can be a challenge because it's hard to predict how receptive to participation he'll be on any given day.  I've come to anticipate either magic or disaster, but nothing in between.

The Halloween season is filled with opportunities for fantastic adventures and/or utter failures.  We experienced the full range.

Halloween weekend, my mother suggested we take Ryan to a corn maze at a small teaching farm.  Warily, I agreed, knowing Ryan would either love running through the corn, or he would freak out and demand freedom and we'd have to figure out the shortest route out of the corn field.

I'm pleased to report, the day could not have gone better.

Our first stop at the farm was a petting zoo, in which kids could pet and feed pigs, goats, sheep, llamas... Well, they could feed the animals as long as their parents were willing to spend $1 per lettuce leaf;  I was not willing to do that terribly long.
Goats are not easily amused.  I am.
The biggest hit of the day was the mice.  Ryan was totally focused.  I think he would have played with them all afternoon if we had let him.  I'll let the video speak for itself:
Stu and I have since brought Ryan to a pet store to let him visit some mice, but we've decided to hold off on any pet purchases until we've sold our apartment.  Somehow, Stu thinks the sight and smell of rodents would be a turn-off to potential buyers.


In the corn maze, Ryan was delighted.  The maze featured nine numbered mailboxes, each of which contained a piece of a map of the maze.  Ryan loved running through the maze looking for numbers, and taping together the little map sections.  Truly, I can't imagine that day going any better.


The next day was Halloween.  Ryan had given me zero indication of what sort of costume he wanted to wear, so he wound up like this:

Stu and I have debated whether Ryan was a Pizza Monster or a slice of pizza being eaten by a monster.  In any case, he was gluten free.




Ryan was reluctant to leave the house to go trick or treating; he kept asking to watch cartoons.  Once we dragged him outside, he was happy to run down the sidewalks and look at decorations in the dark, but he gave no indication of noticing any costumes or caring about what people put in his plastic pumpkin.  When we got home, he dutifully dumped out his candy on the floor and ate one piece, but the haul has gone largely unnoticed since then.  He does, however, like to hide random toys in the pumpkin.


Another annual fall tradition around here is The Great Jack o' Lantern Blaze near Sleepy Hollow.  Every year, thousands of hand-carved pumpkins are lit and arranged in a dazzling display at an historic mansion.  There are full-size dinosaurs made of pumpkins, a sea of pumpkins carved with pictures of fish, a plot of undead pumpkin people rising from their graves.  Quite spectacular.

Ryan cared for about 2 or 3 minutes.  Then he spent the rest of our tour of the pumpkins sitting on Stu's shoulders, asking to go home and reciting scripts from computer games.  This was far preferable to last year's experience, which involved dragging a crying, whining Ryan past the sights in a cold wind, but it still wasn't a great time.


And I have nothing to say about my building's annual Halloween party, because Ryan walked in the door, turned around, and walked right out.  But since we knew to go into the situation with no expectation of success, we were not disappointed or surprised.  The highs of one day balance the lows of the next.

Friday, November 5, 2010

We've Come From the Future

I have not yet read What Technology Wants by Kevin Kelly. I have a hold on it at the library and plan on picking it up this afternoon. All I know about it is what's in the blurb on Amazon and what I heard in five minutes of an interview with the author on NPR. The gist seems to be that technology evolves in a biological way, and that people and technology evolve together. In the piece of the interview I heard, Kelly was discussing that after early humans invented cooking, humans' bodies changed so that today we need many foods to be cooked.

As far as I know this book says nothing about autism. But what little I've learned about this book has inspired in me a new hypothesis:

What if the dramatic rise in diagnoses of autism since 1981 is actually a result of the information age?  What if autistics are the people of the future?*

Individuals with autism are uniquely suited to working with computers and are known for their ability to process data in an analytic way.  There's a market out there for Aspie talent: Aspiritech hires only people with Asperger's to do software testing because of their unique attention to detail, laser-like focus, and ability to perform repetitive tasks.  I can think of no previous time in history when autism was such a potential asset for society.  Maybe the genes for autism are expressing themselves with more frequency now because the time is right.  Where would our tech-driven culture be without the Mark Zuckerbergs and Bill Gateses of the world?

Perhaps autism is one of those mutations that doesn't help the individual reproduce and pass on his genes (social awkwardness often limits mating options), but which aids the society at large, and is therefore beneficial.  I've heard similar arguments about homosexuality: gay individuals traditionally produce fewer children than their straight counterparts, but their social contributions benefit the larger population in such a way that their families are better able to reproduce and perpetuate the gay gene.

So yay for supportive lesbian aunts, and hurray for uncles with autism who have the potential to advance the technologies that improve all our lives.



* Please note I am pulling this out of the air.  I have no scientific basis for what I'm saying.  This post is pure distilled Truthiness.

Monday, October 25, 2010

Well, how did you THINK it was going to go?

School exhausts Ryan.  It takes a lot of effort for him to pay attention, keep himself under control while being asked to do things he doesn't want to do, deal with being forced to interact with his classmates.  By Friday afternoon, he's fried.  Saturday mornings we lay low, and usually by Saturday afternoon, Ryan's reasonably cheerful and cooperative again; sometimes it takes him the whole weekend to recover.

This Friday he came home from school, threw himself on the floor crying, and then crawled into bed for a long nap.  It took quite a bit of effort on my part to wake him up and keep him awake long enough to eat dinner and put on pajamas before he passed out again.

Saturday morning, I skipped practice and hung out with Ryan.  He alternated between watching tv, playing on the computer, eating pancakes, and throwing himself on the floor in raging meltdowns.  When I cut him off from the tv and games, the meltdowns got more desperate and vocal.  At some point there were beads and Candy Land men flying across the living room.  You know, Saturday morning.

Stu and I debated what to do about the parade.  "Let's try it," I suggested.  "The worst that could happen is he freaks out and you take him home early."

"You THINK that's the worst that could happen," Stu challenged.

I didn't see that as much of a challenge.

We went to the house where several of my teammates had already gathered to put on their Dia de los Muertos makeup.  Ryan stared in wonder at the girls' sugar-skull faces.  He seemed ok with the scene.  There was a large dog for him to play with, and a backpack full of snacks.

I painted my face white.  Ryan looked at me critically.

"Wash his face?" he demanded.  (We're still working on the gender pronouns.)

"I'll wash my face later," I promised.

"Off the face?  Clean it?"

I painted my eye sockets black.

"Clean his face?  Off the black, Mommy?"

I drew lines around my mouth and eyes.  Someone drew a spider web on my forehead.
It may be time for contact lenses.  This is just awkward.

"Clean it?  Wash it off?"  He didn't totally lose control, but he obviously disapproved of my makeup.

We drove to the parade's starting point, a large park with no fence.  For some reason we were expected to be present and in skates and gear nearly two hours before the parade was scheduled to step off.  For the first ten minutes or so, Ryan was happy to run across the grass and play in the park's playground.  I pointed out various costumes; he didn't care.

After half an hour, it was obvious Ryan was becoming overwhelmed with the strangely-dressed crowd and the loud marching band that was practicing in the park.  He stared intently at my face; he rarely looks at my face at all.  "Clean the face please?  Go home?"

Stu managed to keep Ryan distracted for another half hour, until we could no longer ignore how Ryan was throwing himself down onto the grass.  They left a full hour before the parade started.  Stu had wisely insisted on parking off the parade route, to facilitate escape under any circumstances.

Frankly, I was impressed that Ryan lasted as long as he did.  He could have been much more frightened of the makeup, he could have been more disturbed by strange mix of sounds and sights at the parade set-up.  It could have gone worse.

I would feel disingenuous saying it could have gone better.  Yes, the typical kids all did great - they were playing together, showing off their costumes, gathering candy and balloons and glow bracelets, marching in the parade.  But I had zero expectation that Ryan would experience the Halloween parade like that.

And as for the parade, we won first place for Group costume:
I'm in the back, under the letter I.


And I got to show off my greatest talent:

Sunday, October 24, 2010

Let us Ride... to Camelot

On second thought, let's not go to Camelot.  It is a silly place.

Bedtime in our house is often preceded by intense sensory seeking.  Jumping on the bed, headstands on the couch, being buried under a dozen stuffed animals, throwing said stuffed animals in the air - Ryan works all the craziness out of his system, then collapses into the sleep of the righteous.

Tonight's theatrics were extra special.

"Cover me?!" he demanded, as usual.  I pulled the blanket over his head, put a pillow on his back, and lay down on top of him.  He giggled.  "Tickle me?  Stop it!  Tickle me?"  On and on.  He launched into some maniacal script, over and over, giggling.

Things were getting stupid.  So I whacked him with a pillow.

This, apparently, was the greatest thing ever.

"Again?"  Oh, ok.

"More splatting?  Please?" (He spontaneously named this game "Splatting."  All on his own.)

Ryan insisted on being beaten with a pillow, continuously, for several minutes.  I thwacked him with my full strength, and he laughed.  When my arms got tired I passed the pillow off to Stu, who somehow couldn't muster as much enthusiasm for beating our son.

"Can I have more splatting?!?"

When I could no longer bring myself to hitting the kid with a pillow, I tried to calm the mood by rubbing his back and reading some stories.  Ryan's favorite moose decided to perform an interpretive dance to Frog and Toad.  The moose was hopping all over the pillow, on my head, on my face.  I tried to maintain composure as the moose bounced madly off my glasses.

"More splatting?"

"No.  Are you listening?"

"Yes."  Bounce, bounce, bounce.  He actually was listening.  Even while bouncing the moose all over the place, Ryan was still able to fill in the blanks I left in the story.  Boyfriend takes his multitasking seriously.

By the third story, he was calm, quiet, struggling to keep his eyes open.  He was almost asleep when I kissed him goodnight.


If your child is bouncing off the walls and making you crazy, I highly recommend beating him with a pillow.  It's good for everyone concerned.

Thursday, October 21, 2010

Seeking advice: Halloween Parade

Ryan does not believe in cosmetics.  If I paint my nails, he squirms and begs, "Off da purple" (or whatever the color happens to me).  If I put lotion on his skin, he demands, "Wipe it off, wipe it off" (mostly playfully now, but it used to be desperate). And we all know how he reacts if he catches me wearing a sticker.

This weekend, my derby league is "marching" in a Halloween parade.  A big parade - like, 15,000 people, with celebrity judges and loud marching bands and stuff.  And we are all supposed to skate around wearing Dia de los Muertos face paint.

Between the makeup and the noise and the crowd and the sensory overload and the being outside for 2-3 hours in late-afternoon / early-evening, I don't see this going well.

I see a couple of options:

- I could stay home and not participate.  But that's no fun.
- I could have Ryan watch the girls put on their makeup so it's a bit less scary.

- I can stay off skates and Ryan could march with me.

- Ryan could hang out with Stu on the sidelines, and if it all becomes too much Stu can whisk him away.

- Ryan could stay home with Stu all afternoon.  


Leaving Ryan at home would be the easiest, except that Ryan has been really anti-Daddy lately.  Like, more so than usual.  He finds new and increasingly cruel ways to try to get Stu to leave the room whenever Stu attempts to play with him, and then when Stu insists on sticking around, Ryan has a meltdown.  And Stu's ego can only handle so much abuse.

Giving Ryan the option to leave early seems like a fair compromise, but the parade is like an hour from our house, so it could end up being a lot of traveling for not much payoff.

Or Ryan could surprise us all and love the parade.

So, with two days til the parade, I'm asking for your advice: what would you do with Ryan?




Tuesday, October 12, 2010

The Zoo: Nothing To See Here

Ryan is teaching me to appreciate the world in ways I never would have thought of myself.


Ryan was off from school for Columbus Day, so I thought it would be fun to make use of our zoo membership. And he was excited to go: while I was doing laundry, he was trying to make a break for the garage, saying, "Go to the animals, please?"

The sea lions were putting on quite a show - a large male was barking, a baby sea lion was barking back, one sea lion climbed to the top of a big rock and dove into the water. Kids were cheering and pointing excitedly.

Ryan stuck out a finger and announced, "Shark."

I looked. There was a sign in front of the exhibit with a drawing of a shark chasing some sea lions to demonstrate that sea lions are an important food source for sharks. Yes, I told him, sharks eat sea lions.

"What animals should we look for next?" I asked him.

"Find the giraffe!"

Yay, a real answer! We went off in search of giraffes. Ryan was excited about running on all the paths - the various animals he was streaking past were immaterial.

Soon I could see a herd of giraffes in the distance. I told Ryan which way to run. He stood in front of the giraffes, but he didn't seem to be looking at them. I tried to engage him: how many giraffes do you see? Look at the baby giraffe! Ooh, there are ostriches in there, too! Why do you think that giraffe is licking a tree?

No response.

Then seemingly out of nowhere, he announced, "Zebras have stripes." This is true. But there were no zebras in the giraffe habitat.

Then I noticed the sign: there was an illustration of giraffes and zebras mingling on the savannah. Ah. I asked Ryan if he wanted to find the real live zebras; he started walking aimlessly.

Nearby we found an impressive gorilla exhibit I had never been to before.  I pointed out the huge gorilla hanging out right next to the glass!  The gorilla sleeping!  The gorillas in the trees!  The gorilla uprooting small plants and eating one leaf at a time!  The gorilla peeing! 

But all Ryan cared about was the toy tiger he had been playing with.


Let me tell you about Ryan's favorite part of the  Congo Gorilla Forrest.  There's a little movie theater that shows the same educational film over and over.  Above the door is a scrolling LED sign that announces how many minutes til the next show starts.  Ryan loved that LED sign.  He told me to pick him up so he could touch the moving letters.  He squinted at the red lights out of the corner of his eye.  It was way more exciting than gorillas.

A year or more ago, I would have considered this a ridiculous outing to the zoo.   I would have become frustrated that Ryan had showed little to no interest in the animals.  I would have muttered, "We could have looked at pictures at home."  But now I can appreciate that in his own odd way, Ryan was happy.  He got to run around outside while looking at things he liked.  They weren't the sights I had in mind, but there's more than one way to enjoy a morning at the zoo.

Roller Derby Update

One of my pet peeves is people who talk a lot about something to give the impression they're great at it when in reality they're mediocre at best. But a lot of you keep asking how I'm doing with roller derby, so I suppose I owe y'all a post on it.

I'm not great - there are some aspects at which I'm not even good - but I'm getting better.  And I'm having a lot of fun.
Photo by Manish Gosalia
I've reached a sort of plateau. I am painfully aware of what skills I need to develop (speed, acceleration, staying in bounds, keeping my elbows to myself), and I feel like many of the other fresh meat are picking these skills up faster than I am. It's quite frustrating.

But I'm trying. I've been to almost every practice. And I take pleasure in my own personal victories. Like last night when I fell during a scrimmage, I remembered to "fall small," which was a major help when another skater tripped over me and rolled over my head.

I'm pleased with my increased endurance. The other day I went skating along a paved woodland trail along a river. The first time I skated this route on my quad skates, back in June, I had to stop and rest on my way to a particular mile marker and a couple more times on my way back. This week, I breezed past that mile marker, went another mile or so, then turned around and made it back to my car without having rested at all, and feeling like I could have gone further.

I'm not fast, but I'm faster than I was. I'm still learning how to play the game, but I'm starting to feel like I maybe sort of know what's going on around me sometimes.

One thing I'm worried about is that the league is taking an off-season break this winter, so I will not have practice for nearly two months. That's a lot of opportunity to lose skills. And it's another two months before I'm eligible to be a rostered player. I feel so far from ready for that, anyway.

But I've got my name picked out...

Wednesday, October 6, 2010

The Book: Update

Remember that children's book I was writing?  Well, "I Have Autism, I Am Awesome" has found a publisher, I have a contract, and illustrations are in the works!  Completion is still a long way off, but I'll keep you posted.

It's a small publishing house - more like a publishing kitchen table - so I will be responsible for much of the promotional work.  In preparation for this, I have started compiling a list of autism-related organizations and publications I will want to contact down the line.  There are a lot of them - local, national, international.  This could easily become a never-ending research project.

The autism community tends to split into two broad factions: the neurodiversity camp, and the cure autism contingent.  As you know by now, I believe that autism is a distinctive way of being  - not a disease - and that individuals on the spectrum should be proud of their special abilities; my book kind of reads like a neurodiversity primer. 

But if I want to sell my book and my agenda, I'm going to have to talk to the families on the other side of the aisle as well.  Entertaining the thought of chatting up the cure community is only a little less frightening to me than the thought of being trapped in a room with Christine O'Donnell.  I want them to read my book to their children.  Perhaps it will help their kids feel proud of who they are, and not ashamed of being "diseased."

Any suggestions of organizations I should talk to when it comes time to promote this thing?

Friday, October 1, 2010

Bullies Aren't Going Anywhere. Deal With It.

There's been a lot of talk in the news this week about the evils of bullying, and the tragedy of teenagers killing themselves because they were bullied. I've heard people (rightly) decrying the actions of two Rutgers students who secretly videotaped a student having sex and posted the footage online. I've heard discussions of how to stop intolerant people from bullying.

This is an important conversation to have, but not nearly as important as the less-discussed issue: how can we teach our children to handle being bullied?

I was taunted pretty regularly as a kid. I was mocked for being "too smart," for wearing the wrong clothes, for being odd. Boys would draw on the back of my shirt with dandelions, or call to pretend to ask me out and then hang up amid the background laughter of their friends. Girls wouldn't even talk to me. A teacher in high school literally refused to give me the time of day. In college, my "friend" slept with my boyfriend to hurt me, then let it be known that she had a large knife in her room and wasn't afraid to use it (and we all lived on the same hall. Good times...).

But I didn't kill myself. Even though I suffer from clinical depression, I didn't kill myself.

I was raised to believe in myself. I had goals and passions to focus on. I had parents who I knew would listen to me, even if I didn't want to talk to them. I had a handful of friends who appreciated me. I developed a thick skin.

Bullies will always exist, throughout our lives, because some people are just jerks. We can try to educate them, and we may get through to some of them, but we'll never convert them all. Fox News will never lack for job applicants...

Therefore, it is critical that we turn our attention to coping mechanisms. This is especially important for parents of special needs kids, who are easy targets for bullying.  We must teach our children from day one that the loudest person in the room isn't always the one who is right.  Our kids must grow up knowing they are important and that their lives have value.  That the world needs them.  That they are loved unconditionally.

Tuesday, September 28, 2010

The Last Five Years

Ryan turned five today.

Five seems really old.

Five isn't a baby anymore.  Five is kindergarten and loose teeth and learning to read.  Five is putting on your own shoes, hanging up your own coat, and forgetting to put the caps back on the markers.  Five is having a clear preference for red toothpaste, shirts without pockets, and pizza with broccoli.

Five is getting up close with a fire engine.


Five is enough distance for reflection.  It's half a lifetime pre-diagnosis, half a lifetime post-diagnosis.  It's the first time we've actually spoken the words, "What if I hadn't fallen?"

Ryan's birth was induced two weeks early because a liver complication had greatly increased the chances of stillbirth if he had been allowed to go to term.  Despite earlier tests for this imbalance, it was only discovered in time because I happened to be in the hospital anyway, because I had fallen on my belly.  Read here (last two paragraphs) for the dramatic version of the story.

Five years later, Stu and I finally feel far enough out of the woods to ask each other, What would we have done if Ryan had died?  What would our lives be like now if Ryan had never come home with us?  Would we have tried to have another child?  Would we always feel an emptiness in our hearts?

There are other What Ifs that are still too hard to talk about.  Ryan's early years are also tangled with Stu's father's long recovery from a catastrophic motorcycle accident; Ryan was born three weeks after the accident, while his Grandpa was still hospitalized, unconscious.  Ryan and Grandpa have both flourished, in their own ways, together.

But those What Ifs are too frightening, too unthinkable, to even write. 

And they don't even matter much. 

Because we're not in some sci-fi alternate universe in which What Ifs come true.  We're here.  On Ryan's fifth birthday.  Knowing that Grandpa will come to visit on Sunday, when we will eat cake and bounce off the furniture and smack balloons around. 

Or maybe just hang out on the couch.



Five is awesome.

Sunday, September 19, 2010

Emmy wished on a dragon scale...


"Play Dragon Tales game, please?"

"I'm sorry honey, Dragon Tales isn't on tv anymore, and the games aren't on the computer anymore."

"Play a game of Dragon Tales, please?"

Dragon Tales was a somewhat obnoxious cartoon that ended production in 2005 but was carried on PBS Kids through last year, along with a bunch of related online games.  

"You're asking very nicely, but I keep telling you, there are no more Dragon Tales games on the computer."

Ryan is getting frustrated and desperate.

"Play Dragon Tales game, Ord In The Dark?" (In his mind, making a more specific request for an unobtainable item makes it more likely to be found.)

I offer, "You can play another kind of game.  Is there something else you would like?"

Ryan's response was immediate: "A cupcake."

This child does not typically request cake.  And the last time I made cupcakes was for Stu's birthday, in early August.  I had made one of those new Duncan Hines gluten free mixes for Ryan's sake, and then picked up a real cake for in case that GF crap sucked.  The cupcakes were surprisingly edible, and I put most of them in the freezer.

I thawed out a cupcake for Ryan.

"Put ice cream on it?" he insisted.  Again, a very unusual request.  I decided to go along with him to encourage his use of language.  He saw me start to scoop out some mint chocolate chip and he screeched, "NO!!!"

I was thrilled.  And confused.

We figured out he really meant icing.  I found a couple of tubes of brightly-colored cake decorating gel, and Ryan went to work.  Swirls of purple and teal sugar were everywhere.  He worked slowly, methodically.

Stu asked, "Are you going to eat any of that cupcake?"

And Ryan whined, "No!"

 Um, wow.  Who is this child?

"Get another cupcake?" he asked.  Ah - the first cupcake could not be eaten because it had icing on it.  I gave him another cupcake.  He started to decorate it; I reminded him of his distaste for icing; he stopped.

Then Ryan ran off to play, without having a single bite of either cupcake.


The heavily-iced cupcake was delicious.

 ----------
ADDENDUM: Over an hour after writing and publishing this post, I realized that Ryan was not actually asking for a cupcake.  Instead, he was further specifying what game he wanted to play: in the "Ord In The Dark" game, the player uses a "flashlight" to see part of a picture, then has to determine what the rest of the picture must be of.  The game only had three pictures that cycled over and over, and one of them was a cupcake (technically a Dragonberry Muffin).  So Ryan had no interest in eating the real-world cupcake because that's not what he was asking for in the first place.  Mystery solved.

Thursday, September 16, 2010

The Talk

Last week, I had The Talk with my neighbor's nine-year-old daughter.


I've written before about the terrific kids who live in my vertical community, and how well they treat Ryan when playing in the back yard.  They think he's cute and entertaining, and they go out of their way to include Ryan in their games, even when it's obvious he needs a lot of help to properly participate.  The reasons behind his differences have gone largely unspoken - the neighborhood kids accept him and love him just as he is.  (I never take this for granted; these kids are awesome.)

So, last week Ryan and I were playing with acorns on the patio when nine-year-old Alison rolled up on her scooter.  Ryan immediately popped up and shouted, "Hi Ally! and hugged her.  She's a sweet kid, and very maternal with Ryan.  Ryan went back to babbling at the acorns, and Alison sat down next to me, waiting for the other kids to show up.  After a moment, she very politely asked me, "Why does he talk like that?"

I took a breath and we had The Talk.

"Well, Ryan has autism.  Do you know what autism is?"

She shook her head.

"It means that his brain is wired a little differently than yours, and there are some things that are harder for him, like talking and playing with other kids.  But he's still smart, and he's still a good kid, right?  And there are lots of things he's good at.  He just needs a little extra help."

"Oh, I had always wondered about that," she said. 

And the issue was over.  Five minutes later, of course, I was kicking myself, thinking of better ways I could have explained things.  I'll have to work on my elevator speech.


Last night, Ryan and I went outside after dinner, and Alison and the other three kids who were playing in the back yard were delighted to see Ryan - they needed more players for their game.  "Can Ryan play Animal Catcher with us?" they asked me.

The boy in charge of the game - he had played it in gym class that morning - went through several permutations of the rules to adapt the game to the small group of kids he had on hand.  I'm not really clear on the rules, but it seemed to be a game of tag in which the animal catcher is in the middle, and the animals run between two bases on either side of him.  It's keep-away with bases and white tigers and cheetahs.

Anyway, JC asked Ryan, "What animal do you want to be?"  I rephrased the question for Ryan: "It's a running game.  What running animal do you like?"

"Horse!" he announced.  A perfectly good, appropriate answer.  I beamed.

The kids showed Ryan how to play the game.  Russel held Ryan's hand and told him when it was time to run.  They showed him where to stop and how to step on the base. 

And he played with them.  Perfectly.  He gleefully ran across the patio and stomped on the base exactly as the kids had shown him to.  He was delighted.  I was grinning and cheering from the sidelines.  He played this structured game with them for a solid 10 minutes.

As they played, I sat next to Alison's mother.  I told her I had had The Talk with Ally.  I told her how I had explained autism, so she would have a framework if Alison came to her with further questions.  Ally's mother thanked me, and cheered along with me for how well Ryan was playing the game.

Tuesday, September 14, 2010

Free Cell


Monday afternoon, I dropped in on Ryan's school to allay my own anxieties.

It didn't work.

Ryan's classroom is in the annex of the school, on the third floor of a church school across the street.  To get in, you must first check in with the main office, on the second floor of the big, imposing main school.  Just getting to the office was tricky, because there were a couple of classes filing up the narrow staircase to get from the playground to their classrooms.  I wove through the kids and found the office.

The office called Ryan's teacher, who said it was a perfect time to stop by and meet her.  A school social worker happened to be heading back to her office in the Annex anyway, so I walked with her.

Ms. J seemed perfectly nice, we chatted a while, and she gave me the grand tour.  The third floor of the Annex is dedicated to special ed kindergarten.  It's a cramped, institutional-feeling place, with horrible fluorescent lighting and furniture that's been in use since the Carter administration.  There are three tiny classrooms, all for kids with autism and other communication disorders.  There are even smaller, windowless rooms for speech therapy, OT, and PT.  For extra play space, the teachers will bring the OT and PT toys into the hallway - I stepped around a therapist working with two little boys with a plastic bowling set.  There's a little computer lab full of old computers with giant CRT screens, which is where Ryan was working during my tour.

And then there's the Quiet Room.

Ms. J explained that the Quiet Room is for containing a child who is having a meltdown and has become a danger to himself or others.  It is a tiny cell lined with blue gym mats on the walls and floor.  There is no furniture.  There's a domed mirror near the ceiling so a teacher can monitor an unruly child through the window on the door.  "We don't use it much anymore," Ms. J explained, "but it's there for just in case."

I could not get the image of the Quiet Room out of my head for the rest of the day.  I was stunned to consider that there would be a circumstance under which a teacher would be totally unable to control a child in any other way besides locking him up.  I was terrified of the thought that my baby might someday be relegated to this padded cell.  I cried with the realization that my child is spending over six hours a day among kids for whom confinement in this room might someday be an appropriate precaution.

I wonder to what degree this cell is a relic of the way special needs kids used to be handled vs. how educators deal with behavioral issues today.  Even if they "don't use it much anymore," the Quiet Room has not been converted to a storage closet or other useful purpose, so it clearly still serves some function.  Chrissy tells me it's not an uncommon feature of special ed schools she's seen.

Someone, please buy our beautiful apartment so we can get the hell out of this crappy school district ASAP.

Friday, September 10, 2010

Report from Kindergarten

Ryan came home from his first day of kindergarten in fine spirits, neither sobbing from the horrors of the day nor giddy to see me.  Since he does not have the language skills to tell me about his day, I must assume things went well for him.

Lacking input from Ryan, I'm inferring the quality of my child's educational setting from these two things:  The welcome packet that was placed in Ryan's backpack consisted of four copies of Page One stapled together and nothing else; and the stainless steel container that was in his lunch box did not come home with him. I'm left with the impression of a careless staff, lacking attention to detail and unable to handle a class of only eight kids (and there are supposed to be at least three adults in the room at all times).

These are the times, though, when I really wish he could tell me things about his day.  Is Mrs. J nice?  What songs did they sing?  Does he recognize any of the kids in the class?  Was he scared?  And what the hell happened to his lunch?

Monday, September 6, 2010

Ado Annie No More!

Ryan's just a boy who can't say no.

He is notoriously bad at answering yes/no questions. Faced with a yes/no, he will say Yes almost every time, not because he's agreeable by nature or eager to try new things, but because he does not seem to make the connection between his words and their meaning. If I say, "Do you want to play outside?" he will invariably say Yes; but sometimes that Yes is immediately followed by crying, whining, screaming, throwing himself on the floor, and hiding in the corner - his alternative ways of saying No.

We've been working on yes/no for the better part of the last year, with limited success.

Until today.

Ryan, Stu, and I were at a playground this afternoon. At our prompting, Ryan was swinging from a low bar on the jungle gym (because it would never occur to him to spontaneously swing with his arms, and we want him to strengthen his grip). I noticed a rather high row of hanging rings and encouraged Ryan to climb up the stairs to the platform near them. I showed him that if he wanted to, he could grab the nearest ring and swing from it.

"Here, do you want to swing like a monkey?" I asked him.

With fear in his eyes, Ryan emphatically cried out, "NO!!!"

I grabbed Ryan off the platform, held him tightly, and told him, "Baby, you don't have to do anything you don't want to do." As he ran off to jump off his favorite rock, I started sobbing all over Stu's shoulder. That moment has been so long coming. We were probably the only parents at that park who were totally thrilled to hear their child screaming No.

Totally thrilled.

Sunday, September 5, 2010

I'm not going to throw up.


My baby is starting kindergarten on Wednesday.  It's Sunday night and I still don't know what time school starts on Wednesday, or what time the bus will pick him up.  I don't have a school supply list.

He's three weeks shy of his fifth birthday, he has the pragmatic language and social skills of a three-year-old, and he's going to kindergarten. 

All I know is he will be in a class of eight children with autism, taught by Mrs. J, her two assistants, and a battery of therapists.  Up until this week, that has been my sole concern: to secure his place in the most supportive possible environment, with as much assistance as our school district can provide.  But now, all those practical details, like when the hell he's supposed to show up, seem pressing, and I'm a little surprised how much work it seems to be to find the simple answers I need.  I guess I'll be making a few phone calls on Tuesday.

Ryan attended three different preschools, and I was able to walk him into each of them a day or so before school started to help his transition.  This time, there's no comfy-cozy buffer period provided (though we might show up at the school unannounced on Tuesday, just to check it out).  I don't know who I'm handing my son off to, and he does not have the language to tell me about his day after the fact.  I have to rely on his new teachers to write notes home, or I have to interpret any new and unusual behaviors as possible reactions to whatever happened at school.

I'm not going to throw up.  I'm not going to throw up...

Friday, September 3, 2010

Thank you, Liz! And A Tale Of Three Piggies.

Just a quick note of thanks to DaMomma for inviting me over there to talk about autism and neurodiversity with her devoted readers. 

And welcome, new readers!  Stick around - something amazing might happen any second. 

Or, you know, someone might just tell the story of The Three Little Pigs. 

Again.

Ryan has been really into The Three Little Pigs lately.  He's been retelling the story with plastic animals, Play Doh, stuffed moose.  He's got most of the talking points covered, but the subtleties of the story still escape him.  Perhaps this is another sign that he's hyperlexic.  Here's a typical reenactment. 


I don't care if the plot doesn't all hold together (note that first the pigs get eaten, and then they run away), I think this is awesome.  He's demonstrating play skills he never had before.  The characters have voices.  He's (mostly) staying focused on telling the story.  He designed and built the house of sticks all by himself.  Go Captain!

Thursday, September 2, 2010

My 15 Minutes of Fame Starts Now

I've had a handful of celebrity encounters in my adult life. 

My first temp job, I got to put Donald Trump on hold.

I've served coffee to Frank Oz.  I had to shove my theater's concession stand worker aside to do it, but I did it, and managed to chat him up a little beyond "I love you love you love you."

About ten years ago, Prince hit on me on the N train in Queens.  I turned him down.

Once I got to visit the late Jim Henson's office.  I'm going to imagine his spirit was in the room and count that as an encounter.

And now the latest, and perhaps coolest:  DaMomma approached me to ask if she could interview me.

I've been reading this woman's blog for three or four years - I know all sorts of intimate details about her life, her friends, her three children - but we have never met.  The characters from her stories have become just as real to me as people I actually see in the flesh - I'll be talking to Stu, and will find myself saying, "Oh, guess what Ren did?"  And in my head, DaMomma became this wise mother-figure, always coming up with some brilliant answer to whatever tough neurotypical-child parenting challenge the day had thrown at her.

But, you know, I don't know her.  And she certainly doesn't know me.

But then she read some of my blog (via the link attached to my name in a comment on some post or another of hers), and decided to contact me.  And suddenly there was a sort of relationship, instead of the one-way readership I had experienced the past few years.  Suddenly, I felt like a I had become a character in a favorite book.

She emailed me.  She said, "I've had some requests to do a bit on autism.  Would you be interested in helping me with that?"  Um, yes please!


That SHE contacted ME at all, let alone to ask for my help, made me feel like a freaking rock star.   And having the opportunity to explain my pro-neurodiversity agenda to a large general audience is tremendously exciting to me.  So please check out DaMomma's profile of lil' ole me, and catch up on her awesome adventures in parenting and in watching the last space shuttle launch in person!

Sunday, August 29, 2010

Is it time for school yet?

Ryan's IEP calls for Extended Year Services, aka summer school, because his team's Regression Statements warn he will forget everything he knows without constant drilling.  We are in the middle of that nether world between EYS and (buh buh buuuuuuh) Kindergarten - three and a half weeks of unstructured, therapy-free time.  In other words, this is when the regression happens.

Ryan actually got a jump on his summer regression and started back-peddling during the last couple weeks of summer school.  I don't really understand what precipitated this - I have a feeling he was protesting my roller derby practice schedule, but I'm also told he didn't like the way his classroom had been rearranged - but he started becoming more, shall we say, accident prone.  Like, he went from one pee accident every two or three weeks to one almost every day.  We've been working on getting him back on track, but it's slow-going.

Then, he stopped using nouns in his requests.  Now, if he's thirsty he might say, "I want more."

"More what?"

"More."

Or, more entertainingly, I'll prompt him, "What do you want?"  And he'll reply, "I want... I want... I want... I want... I want..."  And he'll repeat that until he makes himself cry unless I insert a few suggestions.

Or he might request, "I want more the thirsty drinking, in my mouth."

Or, we might have a conversation like this:
Me: "Which book should we read?" 

Ryan: "That one." (no pointing, no shift in gaze in any direction)

Me: "Which one?"

Ryan: "That one." (no pointing, no shift in gaze in any direction)

Me: "This book, or this book?"

Ryan: "That one." (looks between the books)
Similar conversations occur about the selection of snacks or determining who should read a bedtime story.

And when he does use nouns, he seems to be experimenting with phonics, which I suppose I should support, but which I actually just find annoying.  Like, he'll ask, "Can I have more Jjjhuh*.  ...Ooh.  ...Ooh.  ...Suh.  ...Huh?" 

"Can you say that as all one word, please?"

"Jjjjhuh.  ...Ooh.  ...Ooh.  ...Suh.  ...Huh..." 


I'm ready for him to go back to school, please.




* Think Jackie Mason for pronunciation.  Excessive phlegm is involved.

Friday, August 20, 2010

Independent Streaker

Around age two, children start asserting their independence by trying to do things for themselves.  At least that's what I've read.  I actually haven't seen much of a DIY-impulse around here at all.  Rather than letting the Captain try stepping out of the nest, I generally find myself pushing him, shoving him, dragging him inch by inch out of his tree.  If it were up to Ryan, I'd be holding his food while he bit it.

One of the most independent-like things he does regularly is running ahead of us to get from our apartment to our car.  As soon as we hit the hallway between the buildings of our complex, he books it as fast as he can down the hall, whips around the corner to the right, flings open the fire door, and starts down the stairs to the garage.  He pauses there on the stairs and flashes a maniacal grin when we finally catch up to him there.

The other day, my mother came to visit, and the three of us were heading down to the car to go out for lunch.  Ryan stood patiently in the elevator, playing with some to-be-mailed bills I had handed him.  When the elevator opened, he dashed down the hall as usual.  But instead of turning right to get to the garage, he turned left.

To the left, there's a laundry room, a locked storage room, and a door leading outside.

He wasn't in the laundry room.  And the door to outside was wide open.

I ran outside, screaming his name.  No answer.

I saw Jonathan riding his bike in the street, and I screeched "Did you see Ryan go by here?"  Yes, he said, he ran down the sidewalk.  It suddenly occurred to me what Ryan was doing: he was going to the nearest mailbox.  On the main street.  I ran to catch up.

So you shouldn't worry too much, I should mention that the sidewalk in question is over two blocks long, but with no streets to cross between our building and the mailbox. 

Anyway.

I caught Ryan about three-quarters of the way to the mailbox.  I grabbed his arms, got down low, and freaked the hell out lectured him that he is Never To Leave The House Without Me and that Terrible Things could have happened to him.  He stared blankly.  I couldn't tell if he understood my explanation of The Rules.  He seemed unimpressed with my yelling/imploring/maternal theatrics.  He just wanted to mail the letters, thanks.

I saw my mother approaching us; she had gone searching for Ryan in a different direction.  After determining that Grandma had not had a heart attack, the three of us walked to the mailbox together.  Ryan mailed the bills, and we walked to the car together.  Mostly together.  OK, Ryan was still running ahead of us a little, but he stayed within sight.

It is totally frustrating and unsatisfying to yell at someone who does not react.  How can I know if I've gotten my message across to Ryan?  If Ryan were a neurotypical kid, I could punish him, and he could connect the punishment to the offense, and I would know he had learned something.  With Ryan, I have a hard time knowing what connections he's able to grasp.  I've tried taking away computer games as a penalty for a certain behavioral problem we're trying to correct, but as devastated as he becomes when he's denied his precious PBSkids.org games, the problematic behavior continues unabated, in part, I believe, because he does not really see the cause-effect relationship between offensive behavior and loss of computer privileges.

But we keep up the negative reinforcement model (as well as tons of positive reinforcement - Stickers! Chocolate! Prizes!) anyway, because we hope that eventually he will get it.  We can't just throw up our hands and assume he's incapable of learning.

So I will keep yelling at him, even though he stares blankly, because someday he will hear me.  Hopefully before he gets himself in too much trouble.

Tuesday, August 10, 2010

In Which I Share Perhaps Too Much

My husband and I have little in common, but we do share an unhealthy obsession with moose.

When we were first living together, we acquired a couple of Christmas tree ornaments from Costco.  They were four-inch-high stuffed animals - a moose and a penguin - in coordinating sweaters, with loops on top of their heads.  During that Christmas season, the moose ornament revealed his personality to us.

He was cute, but a little evil.  He was non-verbal, but made his dastardly plots known to us.  We named him Melvin.  After Christmas he took up residence in the tunnel between our bed and the wall; while we were at work, he would spend his days building mysterious, legendary things in the tunnel - spaceships and computer systems and whatnot.

Early in our marriage, we received a second stuffed moose, who quickly took on the role of Melvin's big brother.  We named him Phil.

Phil became our pet/child/travel companion. Also non-verbal, Phil is joyous, loving, and friendly.

While Phil and Melvin have remained our only "real" plush friends (real in the Velveteen Rabbit sense), we have amassed quite a cast of moose characters in our home.
Most of them have names and back stories.  The beanie baby moose on the far right is actually Phil's special  stuffed animal.  Before we knew that this particular little moose existed, Phil, in his non-verbal way, made it clear to us that he wanted a little moose that looked like him, but a little bigger than Melvin.  When I found just the moose Phil had requested hanging out at the supermarket, I couldn't leave him there.

Over the past four years, the moose have gravitated to Ryan's room, and have made a life for themselves among the other stuffies.  Fortunately, Melvin has become less evil since Ryan's arrival.  Ryan has played with the moose as he has played with any of the other dozen stuffed animals that live in his room.  He has occasionally snuggled one or the other in bed, but his core sleeping posse has remained dominated by bears.  For as long as I can remember, sleeping has required the presence of four bears and two blankets.  Well, five bears if you ask Ryan.

See how Blue Bear has a tiny picture of a bear driving a car on his blanket part?  Ryan counts that as Bear #5. His name is Car Bear.


The other night, I awoke to hear Ryan moaning and sobbing; this is very unusual.  I went to investigate.  I hugged him and he settled down.  As soon as I left the room, he started fussing again.  As I was trying to figure out what the problem was, Ryan announced, desperately and unprompted, "I need Moose back!"  I searched in his sheets and behind his bed, but didn't find any moose.  I grabbed the first moose I could find from the couch; Ryan scowled at it and kept looking for the right moose.  Finally, I found this* moose, tangled up in his sheet.

Ryan hugged it and fell asleep.

I hadn't realized that Ryan had adopted a moose as his special sleeping buddy.  I asked several times if this moose had a name.  At first he answered Moose, but twice he said Philvin.

That's my kid.


* I actually had to delay publishing this post, because I needed a picture of THE moose, but Ryan had taken it to school for Bring Your Favorite Toy Day.

Monday, August 2, 2010

Phase One: Complete


I'm one step closer to being an officially-rostered roller girl. I have completed the Basic Skills portion of my training. Now I move on to pack hours - ten hours (or maybe ten two-hour sessions, I'm not sure how they count it) of practicing skating really close to other girls without knocking anyone over by accident or getting knocked down on purpose.  Phase Three is scrimmage hours.  Phase Four is getting voted into the league.

Even though I'm happier than I've been in ages, Stu is still displeased about this little adventure of mine. When I get all excited about my minor triumphs from practice, he makes a point of saying "congratulations" in the least-congratulatory tone possible. I know he's just being protective of me because he loves me and wants to keep me safe, but I'm tired of making safe decisions.

Skating is the greatest part of my day.  I'm pushing myself as hard as I can for two hours straight.  I'm way past sweaty.  I'm hanging out with strong, courageous women.  And I'm having so freaking much fun.  There is no autism.  There are no IEPs.  There are no guilt trips or other family arguments.  There are no conventions of bullshit politeness.  There's just me, trying to learn a new game one skill at a time.  There's genuine camaraderie as girls cheer each other on through their speed tests.  There's freedom.  There's power.

Sorry it still bothers you, Honey, I really am.  But I have to go work on my arm whips tonight.

Friday, July 30, 2010

Memories

I am always amazed by Ryan's memory. Not only does he memorize every word of every tv show he watches and every book we read, but he can recall these things, in perfect detail, long after he has seen/heard them.

The other night he became very insistent that he needed "yellow star." After much thought and investigation, we realized he was talking about the second hand on the clock in his bedroom (which had a tiny banana on it, but hey, close enough), which he broke off maybe 9 months ago (while reenacting the Curious George episode in which George keeps changing the time on his clock so he won't have to go to bed).

This morning he asked if he could watch It's A Big Big World on PBS Kids. He hasn't seen that show in over a year; it's not even on the air anymore.

Later in the day, he referenced his favorite Sesame Street episode - "Texas Telly and the Golden Triangle of Destiny" - from last season.

One characteristic of hyperlexia is "strong auditory memory" coupled with weak auditory processing and expressive language.  The more I read about hyperlexia, the more the diagnosis seems to fit.  Ryan's speech therapist gave us a hyperlexia symptom check-list; we checked off 10 of 11 items.

I was thinking about making an appointment with a developmental pediatrician to get a formal diagnosis, but there is a potential pitfall: a diagnosis of hyperlexia instead of PDD-NOS might limit Ryan's service options within the CSE system.  I don't know if the school district classifies hyperlexia as a spectrum disorder - some say it is an ASD, others do not.  If they do not, and if a doctor changed Ryan's official diagnosis (rather than saying he has PDD and hyperlexia) Ryan might not be eligible to attend the special kindergarten program he's slated to enter, even though he would obviously be lost without benefit from its services.

Since slapping this label on Ryan wouldn't benefit him or change his course of treatment in any way, it's probably not worth while to have some doctor write new jargon all over his chart.  But I think I know the answer.

Another

Wednesday night, a Bronx woman buckled under the pressure of taking care of her autistic son, and shot her son and herself to death.

Earlier this week, a Dallas woman killed both her young children because they were autistic and she wanted "normal kids."

There's something broken in our support system.

All parents, whether their children are typical or atypical, need help.  Parents without partners need even more support.  I am fortunate: my husband is present and involved, my parents live nearby and love to spend time with their grandson, I only have one child to care for, and we are not struggling to figure out how to afford food or rent.  I am educated enough to know we are more fortunate than many in this country, and I still feel overwhelmed sometimes by the demands of raising my son.

What could have helped these moms and saved their lives and the lives of their children?  Therapy for themselves?  Access to parent training services?  A network of friends who understand the unique pressures of raising a child with an ASD?  I certainly don't know their individual situations, but I think it's safe to say there were some big holes in their safety nets.

Let's all look out for each other.  Listen to your friends.  Let them vent their frustrations without judging them.  Tell your mommy-friend she's doing a good job.  If you know a single parent, ask if you can watch her kids for an hour or two so she can recharge and take care of herself.  If you have a friend who is raising a child with special needs, do a little research on the child's condition so you can deepen your empathy. 

Ask your friend what she needs.

Be open to actually providing what she needs.

Thursday, July 29, 2010

A Tea Party

"Mommy, would you like some?"

Captain Awesome* has jumped into my downstairs neighbor's kiddie pool.  Uninvited.  While she wasn't home.  With all his clothes on.  The neighbor is a good sport about such things, so I decide that as long as I'm supervising, all will be forgiven.

In the kiddie pool, the Captain is playing with a tiny watering can.  He holds it up for me to see and offers me pretend tea or something.

"Oh, thank you, Baby!  Yes, I would love some!"

I make a cup with my hand, and he pours the entire contents of the watering can into it.  I play the gracious guest.

"Mommy, would you like some?"

"More?  Oh, yes please."

I marvel that he has developed the ability to engage in the most rudimentary form of pretend play.  He pours more water on my hand.

"Mommy, would you like some?"

"No, thank you.  I'm full."

Big blue eyes blink at me.

"Mommy, would you like some?"

"Um, yes.  Thank you."

This game goes on for another dozen or so exchanges, each phrased exactly the same way.  He has learned the formula for initiating a pretend tea party; he has not yet learned to riff on this theme or proceed to Step 2.  With a little modeling, I bet he'll soon be offering me cake to go with my tea.


* As kindergarten approaches, I think the time has come for a little more anonymity.  I'm trying this out first to see how I like it before going back and changing every reference to the kid's name.

Wednesday, July 28, 2010

Hyperlexia

This week I learned of a condition called Hyperlexia.  It's the opposite of Dyslexia: a person can easily read words, but can not comprehend what he has read.  According to Hyperlexia.net, children with this syndrome have a precocious ability to read words, or an intense fascination with letters or number, but difficulty in understanding verbal language or socializing with other people.  Like PDD, hyperlexia may be characterized by echolalia; difficulty with conversations, abstract concepts, or WH questions; sensory issues; awkward social skills; and a need to stick to strict routines.

This sounds very familiar.  Ryan's been reciting the entire alphabet since before he was two, can count to 100, and is fascinated by all things letter-related.  I wouldn't say he can exactly read yet, but he has a lot of sight-words and a basic understanding of phonics.  But the echolalia, the difficulty with conversations, the sensory stuff, and the difficulty with answering questions - yeah, we got that.

We have no diagnosis on this, and I don't know that it would matter if we did - according to a couple of friends of mine who are speech therapists, adding this label probably wouldn't redirect Ryan's course of therapy.  But how fascinating that there are enough brains out there that process language in this way that there's a fancy name for them. 

Thursday, July 22, 2010

The Killer Within

DALLAS – A suburban Dallas woman accused of killing her two young children told a 911 operator that she first tried to poison them because they were autistic and she wanted "normal kids," then choked them with a wire until they stopped moving, according to the recorded call.

...When the operator asked the woman why she attacked her children, she said, "They're both not normal, not normal. They're autistic. Both are autistic." Pressed further, she said, "I don't want my children to be like that. ... I want normal kids."
Later, the dispatcher asked the woman what she was feeling. "Nothing," she responded.

Let me first get the obvious disclaimer out of the way: it is never ok to kill your children.  I can think of few instances in which it is acceptable to kill another person, family or otherwise.  Such behavior should be condemned and punished.

But.

Reading this horrific story, my heart broke for the murderer.

I can totally imagine the thought process that led this woman to strangle her own babies.  I picture her slogging through years of evaluations, treatments, meltdowns, quack cures.  I see her handling daily life with a child with autism as best she could, managing her son's needs by day and crying from the stress every night, praying for a "normal" one, then enduring the heartbreak of realizing her second child was also atypical.  She fears for her children's uncertain future.  She struggles with her children's competing needs.  Her marriage feels the strain.  She feels overwhelmed.  She feels alone.  She feels responsible.  She mourns the life she thinks she should have had - the typical life with typical kids and typical expectations.


Some behavior or meltdown or quirk sets her off.

She snaps.

The future is unfathomable.  She considers suicide, but knows there would be no one left to care for her babies.

So she kills the kids.


The difference between mental illness and mental health is not the presence or absence of dangerous urges: it's what you do with those destructive impulses.  No sane person would murder her children, but I think it would be insane not to feel impulses like that sometimes.