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!