Sunday, August 30, 2009

Amazing weekend

Stu took Thursday and Friday off from work, so we had a long weekend to do family things (don't make me use the word staycation, I might vomit).  The Captain just kept astonishing us with his awesomeness day after day.  And it was the best kind of awesomeness: the kind that looks like totally typical kid behavior, that the average parent wouldn't think of as anything special at all.

Thursday afternoon at a playground, Ryan happily played tag with a little boy he didn't know.  He properly tagged the other kid without being prompted, and he reacted appropriately when the other kid tagged him.

Then we brought him to a nearby Tex-Mex restaurant.  Ryan chose to sit next to Stu in the booth instead of next to me (first time ever), then reached for a tortilla chip, like, "Yeah, when you're in a restaurant you eat the chips" kind of casually.  We ordered him a quesadilla, and he ate it; ate the whole thing.  Throughout dinner, he stayed at the table, colored on his placemat (first time ever), played contentedly.  We didn't have to chase him at all.

Friday we went to a children's museum that Ryan loves.  They have a fabulous water table room, and we always bring a full change of clothes for him because he has way too much fun splashing around.  For the first time, he let us put a plastic smock on him, so his clothes stayed mostly dry.

Saturday was another rainy day, so we went to the ball pit.  Although this is one of Ryan's favorite places in the world, he normally refuses to go into the tunnels or down the slides unless I go with him; this day, he played totally independently.  I've never been so happy to lose sight of him in a crowded place.

Today, we went to Playland for the first time all summer.  Last year, after much coaxing, we got him to go on two rides total and had to take him away after like 45 minutes.  Today, we had a great time there for over three hours. Ryan wore the admission wristband with minimal objection.  He flew a dragon, rode a carousel horse, and was totally giddy about The Whip.  He pointed out to us which ride he wanted to try next.  He was perfectly patient waiting on all the lines, even when other kids were squishing him and tickling his face with their hair.  He actually ate ice cream - he usually detests cold foods.  And as we were heading to the car, he announced that he wanted to go to the bathroom.  Oh yeah, and he kept his pants dry the whole day.

Rock on, Captain Awesome!

And eat this, Jason.

Saturday, August 29, 2009

Puzzling

I'm not usually big on public displays.  You won't see me flying a flag, wearing green on St. Patrick's Day, or having waiters sing me Happy Birthday.  There are no bumper stickers on my car (though during the last presidential campaign, I ended up driving around with an Obama magnet, which I removed shortly after inauguration day).  I am usually annoyed by those ubiquitous awareness-ribbon magnets that pop up everywhere in every imaginable color.  I'm often reminded of an old George Carlin line: "That's a symbol, and I'll leave symbols for the symbol-minded."

I feel a certain ambivalence about the Autism Awareness bumper magnets.  When I see a car drive by with a blue puzzle piece on the back, I have to admit I feel a sense of community - it is satisfying to imagine some other parent navigating a similar situation to ours.  But I would feel weird putting one of those magnets on my car. That's just not how I operate.

I don't even think the puzzle piece is a great symbol for autism.  The society that created this symbol explains that "our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not fit in," but this makes little sense to me, because a puzzle piece implies that there is a puzzle into which it fits perfectly.  And I know that this symbol really pisses off a lot of autistic adults.  I kind of prefer this alternative, representing the spectrum of neurodiversity:



So, it is with great astonishment that I find myself wearing a small puzzle-piece pendant on a silver chain.

I  bought it in an effort to promote awareness, whatever that might mean.  My intention was to solicit conversation with strangers. But in my head, it has become something of an amulet.  When Ryan is behaving strangely in public, I imagine other adults staring at us, then noticing my necklace and thinking "Oh, he must be acting like that because he's autistic, not because that woman is a terrible mother."  I'm sure not a single person has actually gone through that series of thoughts, but I find it a little comforting to imagine everyone within a 10-foot radius suddenly understands my life.

Surprisingly, I myself have even reflected upon this symbol while calming a tantrum or coaching my son through how to put on his shirt.  I look down at my necklace, and it reminds me to breathe.  It reminds me that he isn't having a fit out of spite for me, isn't willfully refusing to use language in traditional ways, isn't just being a pain in the ass.  It reminds me that my baby's brain is wired a little differently than mine, and that it's my job to help him learn to live in my world without denying him the right to be himself - to help him figure out how his piece fits into the puzzle.

Though this be madness...

Full morning at the Ball Pit.  Ryan is a little tired, but not sleepy.  We park in our garage and start walking toward the stairs.

"Stroller!" he screams.  "Stroller!  Stroller!"  He's begging, crying.

Stu says, "Remember last time he was like this, he cried and screamed all the way up in the elevator."  He takes the stroller out of the trunk and unfolds it.

Ryan sits, then points to the stairwell door.

"No, you can't ride the stroller up the stairs,"  I try to explain.  He runs to the stairs, still crying "Stroller!"

Turns out, he was happy to walk home, but wanted us to carry the stroller into the building, rather than leaving it in the trunk.  Because that's how we came down to the car that morning: carrying the stroller through the building (instead of going out in the rain) so we'd have it in the car in case Ryan fell asleep on the way home.

And of course, once we got up the first flight of stairs and were at a point where he could have ridden in the stroller to the elevator, he had zero interest in the stroller.  May not have even noticed it was there.

I had forgotten the first rule of camping: you pack out what you pack in.

Tuesday, August 25, 2009

Parlor Game

A popular parlor game among special needs parents is "Find the Autism."  To play this game, you look through your child's baby books and look for the earliest hint of trouble - the sign you "should have seen" at the time that is totally obvious in retrospect.  It's an exercise in futility, but it's almost impossible to resist.

Week One: "Reflux.  Doctors recommended soy formula."  Should I have suspected the dairy allergy?

5 months: "Very vocal, very happy baby.  I hope he's always this easy-going."  Jinx.

6 months: "LOVES his teddy bear mobile, ceiling fans, things that spin."  He likes watching things spin - is this early stimming?

9 months: "Putting more things in his mouth - except for food!"  Why isn't he putting everything in his mouth?  Why is he totally safe around traditional choking hazards?

10 months: "Tremendous personality - in a group, Ryan approaches each person, grins at them, as though making everyone feel welcome is his job."  This is one of those items that points out how "normal" he was.  Oh, he was totally outgoing!  Where did we go wrong!

11 months: "Enjoys eating finger foods, but not with his fingers.  He's never been big on putting things in his mouth, except fabric and sticks, so the idea of picking up a Cheerio and putting it in his mouth is totally alien.  Ryan learns by doing - through experimenting, and not so much by imitating.  If the other babies are playing on a blanket, he's heading to the other side of the park to watch the big kids."  Should I have been more aggressive when I asked the pediatrician about the not-putting-stuff-in-his-mouth thing?  Should I have recognized this as a motor planning problem?  Should I have been concerned that he wasn't imitating?

13 1/2 months: "FINALLY FEEDS HIMSELF FINGER FOOD"  See, he's just a late bloomer.  Right?
"Banana ('nana') means all foods."  Obsession with bananas has not waned.

15 months: "New hobbies: flipping light switches, spinning the globe."  Totally textbook autistic obsessions.

19 months: "Threw his bink into the penguin pool at the zoo.  I had to fish it out."  I recognize this is not a sign of anything - I just relish the opportunity to tell you that I had to fish around in the penguin pool.

21 months: "Obsessed with trying to spell his name, often with fun results.  R, Y, N.  R, Y, Duckie.  R, Y, Mommy.  R, Y, Ten.  Short sentences, like 'Found bear.'  FOUND is the primary verb."  Look how smart he is!

22 months: "R, Y, Bear.  R, Y, Daddy.  R, Y, Circle.  R, Y, Yucky.  R, Y, P."  Why is he still stuck on this game?

23 months: "Knows all his letters, counts to 15."  As some therapist later said, if he's capable of learning the alphabet this young, he should be able to have/interested in having a conversation.

2nd Birthday: "Ryan spent much of the party playing alone in his room and hiding under the kitchen table."  He's just a little shy, right?

28 months: "Closer to real sentences."  He's not there yet?  Red flag.

32 months: "Closer to sentences."  He's STILL not there?  Red flags, flares, blinky lights.


33 months: "Teachers are slightly concerned about his level of language development.  Considering testing."  Hey, someone saw the blinky lights!  Better late than never.

Monday, August 24, 2009

The Flood

The other day, I sat at home and sobbed for the first time in a long time (well, a long time for me). I cried over the loss of a friendship, over knowing that my friend had been more important to me than I ever was to her.

I cried for the future friendships that would be colored by the incompatibility of my child with other children.

I cried for my old life, my pre-mommy life, my wonderful, selfish, career-oriented world in which the drama had nothing to do with autism.

I cried with resentment for my own son.

I cried for resenting him.

And then I heard a little voice from across the room: "Mommy, no, stop crying. Mommy, stop crying, pwease."

And of course, you know how I reacted to that.

Tears of joy.

Thursday, August 20, 2009

If only I could blame Yoko

The playgroup is slowly drying up. A couple of members recently moved away so their previously-unemployed husbands could take advantage of new career opportunities, and the remaining kids' preschool schedules are making it difficult for us to find a time when more than three of us can get together. It's sad - these ladies have been such an important part of my early mommyhood years, and the kids have grown up together.

It's fascinating to watch the interplay between the children develop. Now that they're all turning four, most of the kids are playing interactively (ok, all the kids except Ryan are playing interactively). And they're pairing off, forming cliques, excluding boys from the clubhouse tent, arguing, choosing who will be their friend and who will not.

Ryan and Grace used to be best friends. When she was 15 months and he was 18 months, they seemed to have some sort of understanding - a true connection that was adorable to watch. Grace was the first friend that Ryan called out for by name. When they would meet at the playground, they would run to hug each other and then run away together, giggling. Grace's mom, Dana, and I became good friends, in part because our kids were so damn cute together.

video
video

(Ignore Dana's conversations in those videos - she's always talking while I'm filming.)

Grace is not only neurotypical, she has always been very advanced, linguistically and socially; she's 3 going on 14. Over the last year, the differences between Ryan and Grace have ballooned, to the extent that they rarely interact at playgroup, and Dana and I have drifted apart a little as our worlds become less and less alike.

The other day, Ryan and Grace had the opportunity to play together one-on-one for the first time in many months. Grace asked me if Ryan wanted to play outside; I told her to ask him.

"Ryan, do you want to go outside with me?" she asked.

"Outside!" he agreed.

Dana was doing laundry or something, so I was supervising Ryan, Grace, and her little sister in Dana's backyard. I set them up running races to the tree and back. They both gleefully started running when I said GO, but Grace had the clear advantage, because she was focused on racing to the tree and back, while Ryan was just absently running across the yard, not caring if there was a goal in mind. Then I told them to have a jumping race. Grace dutifully jumped to the tree and jumped back; Ryan ran near the tree, watched Grace jump a little, then ran back.

Then I had to take Ryan inside to use the bathroom (Grace, of course, potty trained herself literally over night and against her mother's wishes), and after that, the playdate kind of fell apart. I'm tempted to say they just didn't have anything in common. Grace loves dress-up; Ryan can't really change his own clothes. Grace loves to talk; Ryan doesn't know how to have a conversation. Grace follows rules; Ryan tries to pull lit candles and ceramic bowls off Dana's kitchen counter.

I said goodbye and brought Ryan to the sprinkler park, alone.

Monday, August 17, 2009

In which I set the stage for failure.

The world conspires against you when you're stupid enough to let it.

Around 1pm I announced to Ryan that we were going swimming. While I was searching for my keys, he fell asleep in the stroller.

So, around 3:30pm, I announced that we were going swimming. I should have taken Ryan's slow response and general grumpiness as a cue to pursue some other activity, but dammit, we both still had our bathing suits on from before his impromptu nap, and I was determined.

After 40 minutes of Ryan's stumbling around, I finally got him out the door and down to the garage. He was walking slowly, eating grapes from a plastic cup. One grape fell on the floor in the garage. "Aaaah!" he whined, pointing at the grape. "It's ok, you have others, that one's dirty, let's leave it alone," I suggested. In protest, he dumped the rest of the grapes on the floor, then wailed "Grapes! Grapes!"

I should have aborted the mission at this point. But sometimes I'm a daredevil. We got in the car.

"Grapes! Grapes!"

As soon as we got on the parkway and were well surrounded by slow traffic, my dashboard started flashing the word STOP. That's never good. Another coolant leak. My car has over 95,000 miles on it, and the last 5k have just been one problem after another. I've seen this alert enough times to know that I can safely get to the pool before topping off the coolant.

Of course, while staring at the blinking alert on my dashboard, I missed the exit I should have taken. Another delay.

By the time I park at the pool's overflow lot, it's nearly 5pm - Ryan's witching hour. Usually around 5pm he's cranky, and I end up letting him watch tv while I make whatever he's going to reject for dinner. The 5pm Ryan has thin skin. And I'm stupid enough to be starting an outing now.

We started walking up a long hill toward the pool. Ryan barked "Wunch," which means "I'm hungry." While I was pulling an apple from my bag, he fell off the sidewalk, scraping his knees. He cried more pitifully than the booboo warranted. I wrangled him the rest of the way to the pool. We looked through the gate: it was totally packed. Teens screaming on the water slide, kids laughing in the wave pool, babies crying, whistles. Sensory overload.

"Walk away now," my brain told me. But then I heard Ryan chant "Pool! Pool!" and I tuned out that pesky brain again.

We got to the entrance, where, to my surprise, there was a long line of people waiting to go in. It was almost 5pm - I figured everyone would be leaving around then. The doors were shut because a search was underway for a lost child. The administrative office was also closed, which was fitting because I had intended to renew my county park pass there today. Since there was no way to tell how much longer it would be until the doors opened, and I didn't have a valid park pass anyway, I admitted defeat. I told Ryan the line was too long, and we could try again tomorrow.

"Pool!" he cried. I tried to ease his disappointment by distracting him with a shiny red apple. Hey, I'm a sucker for shiny things, why shouldn't my kid be?

When I suggested we stop at the playground that was next to the parking lot, Ryan lost it and launched into the kind of tantrum you would expect of an autistic almost-4-year-old at 5pm on a hot day when he has been denied a promised trip to the pool. He threw himself off the sidewalk and down a rocky hill, cutting his leg open with a wide, deep, long scrape. The apple rolling down the hill and toward the playground was the last straw. He wailed, "Apple! Apple!" with all the exasperation of the afternoon and all the pain of this second boo boo sustained in the last half hour.

We sat on a bench and I held him for a while, cleaning the wound with baby wipes and cursing myself for being dumb enough to leave the house and start this adventure so late in the afternoon. I strapped him into the car and told him to hold a wipe on his leg while I dealt with the coolant leak. I pulled the spare coolant from the trunk and popped the hood, at which time I discovered that the mechanism that's supposed to keep the hood propped open is not engaging. So I'm holding up the hood with one arm, opening the tank and topping off the coolant with the other. Ryan is wailing.

As soon as I pull out of the parking lot, the wailing grows louder. He's saying something, but he's too worked up to make sense. Several blocks later I realize he's saying "Wipe," meaning he dropped the magical healing baby wipe he had been holding on his leg, and he wants another. I fish one out of my bag and he settles down. The damn cut is still bleeding. He dabs at the blood with his Bear.

I carry this cried-out mess of a child up from the garage. He clings to my neck. Even after I've set him up for failure and disappointment, he still loves me and does not appear to hold a grudge. My sweet baby.

Maybe we'll try again tomorrow.

Sunday, August 16, 2009

It's summer

It's officially summer vacation. Ryan has finished extended-year school, and now we have three weeks together before he starts his new school. Three long weeks. Just the two of us. No therapies, no imposed structure, probably few naps. Endless possibility, or countless opportunities to regress?

I imagine we'll be doing a lot of swimming. The boy has been displaying fish-like aspirations, although he doesn't know how to swim yet, or even blow bubbles in the water. Today at the pool, every time he got his face wet, he would run over to me (or Stu, or one of my parents) and wipe his face on our bathing suits. At crotch level. But he was splashing and laughing and walking barefoot and having a wonderful time.

As consumed with the idea of what to do with Ryan for the next few weeks, I am more anxious about what happens once he starts at his new school. The new school will be five full days - 9am to 2pm, no nap - filled with forced socialization and intensive speech, OT, and a form of ABA that emphasizes verbal communication. All of this will be wonderful for him, but I fear it's too much. Is it too much structure? What kind of wreck will he be when he gets off the bus at 2:30?

And what kind of job should I take on while Ryan's off at school? I would like to find something reasonably related to my field (theater management) that I can do from home or near home, and that doesn't require a huge commitment so that if we do finally find someone to buy our apartment (we've had it on the market since January) it won't be a big deal if I leave.

Any ideas, folks, for either summer activities or autumn jobs?

Monday, August 10, 2009

Addendum

The day after Ryan's playing-with-the-neighbors breakthrough, Stu and I took him out to play ball in the backyard again. The kids outside asked if they could use his ball; I said they could, but only if Ryan could play with them. They immediately started the 500th game of kickball of the season, Allison, John Carlo, and Ryan at bat vs. Taylor and Jonathan in the field, a couple of girls riding their Big Wheels around the infield; John Carlo appointed himself Crossing Guard. Allison and John Carlo told Ryan when to kick and tried to show him where to run, but he had his own ideas.

Everything was going great. I was impressed at how well the kids were treating Ryan, how much fun Ryan seemed to be having, how good he was being about sharing his ball.

Then Taylor, who had been pitching, called "Three strikes, we're up."

Allison started screeching, "That's not fair! It doesn't count when Ryan's kicking!"

"Yes it does," shouted Taylor. "If it counted for Ashley, it counts for Ryan."

"That's not fair!"

This fight went back and forth for a while. Allison cried and stomped off to find her mother. Taylor huffed "You always do this!" Ryan wandered off toward the lawn, oblivious to his role in this argument. The tricycles continued circling the patio. The kids tried to resume the game, but nobody was having fun anymore. I reclaimed the ball.

At least Ryan had a good time.

Thursday, August 6, 2009

He's like a real boy.

Yesterday evening, Ryan and I went out to play in the back yard, armed with a hula hoop and a big rubber ball. We started playing catch - actually playing catch, not just me throwing a ball at the boy and him walking away. Then a couple of kids from the building came out, and we all started playing catch together. Ryan not only did not object to including Jonathan and Ashley in our game, but he was really enjoying it. Then Ashley picked up Ryan's hula hoop, and I braced myself for the mine-mine-mine screaming. Instead, he grabbed the other side, smiled, and the two of them went running off together, giggling.

I had to catch my breath: Ryan was playing with other kids, unprompted, and enjoying himself.

A while later, Ashley picked up the ball; Ryan clearly did not approve of this. I prepared myself to intervene for when the inevitable pushing and crying would start, but to my surprise, Ryan said to Ashley, "Hey, that's my toy! Give my ball back!"

My jaw hit the patio. Eight-year-old Alison stopped peddling her bike and stared right along with me. "Did you hear that?" I asked her. "Oh my gosh, I never heard him say that before!" she gushed. "He's warmed up to us!"

Alison and the other kids from the building know that Ryan is different, and they like him anyway. He's the youngest of the usual back yard crowd, and the kids treat him with nurturing kindness. You might think a group of elementary school kids would ignore the peculiar 3 1/2 year old with limited language and poor sharing skills, but they watch him with great amusement, as one might regard the antics of a puppy. I've told them to give him space, to let him get used to them before pulling him into a game, and they have respected that.

These kids gives me great hope for Ryan's future.