The Ryan Files

Didja Miss Me?

2012-01-30T08:42:00.000-05:00

Hello all! I've been trying to figure out how to balance my time among my five or six jobs and how to prioritize the two-and-a-half that actually pay me. I'd really like to tell you about all that.

I'd love to tell you about the advisory panel I recently had the honor to sit on at the New York Hall of Science - how I somehow got thrown in with the head of the Brooklyn Public Library's centers for kids with special needs, the head of the science curriculum at Sesame Workshop, and Jesus Himself to help redesign a preschool exhibit to make it more autism-friendly.

At some point I'll get around to telling you about the talk I gave at a support group for grandparents of ASD kids.

I totally want to fill you in on the article I wrote for Autism Asperger's Digest; the monsters I've been sewing; and the allergen-free recipe site I've been helping out with.

But all that is going to have to wait.

Because yesterday, Ryan told me, "I love you, Mommy."

Unprompted.

For the second time ever.

And my heart is so full, I don't much care about anything else.

Kid stole my tea, but he was so cute I poured him his own cup.

Everyone is entitled to his own opinion, but not his own facts.

2012-01-18T10:08:00.001-05:00

The latest holy-crap-I-lost-something story does not even have the decency to feature an actual lost object.

On Monday Ryan and I went to his favorite children's museum - the one with the awesome water room that supplies the kids with raincoats but still always ends up resulting in the need for a full change of clothes. We stayed all day.

When it was time to leave, we put on our coats.

"Where's my hat, Mommy?"

"You didn't wear a hat today. Remember, you had your Mickey Mouse sweatshirt, and you wore the hood instead of a hat." The sweatshirt, of course, had gotten wet in the water room, and he was now wearing a regular shirt, not a hoodie. I pulled up the hood on his jacket.

Ryan dissolved in tears. "Can you take me back to the museum?" he screamed in a panic. "Got to find my hat!"

"Baby, you didn't wear a hat today. Your hat is at home."

"My hat is LOST! Take me back to the museum! Got to get my hat in the water room!"

I tried to convince him that he was wrong. I showed him the wet sweatshirt he had been wearing earlier.

"Got to find my hat, I'll be happy."

It's very hard to win a rational argument when your opponent is screaming and sobbing and going boneless.

I carried him to the car.

As I buckled his seatbelt, through his tears he asked over and over again to go back to the museum to find his lost hat. I tried one last time to reason with him, but he was positive his hat was in the museum, and I was the monster preventing him from retrieving it.

I started driving, thinking the motion of the car would settle him. I played his favorite CD - the soundtrack to The Muppets - loud enough for him to hear over his own crying.

No change.

He cried the whole way home - forty five minutes of him bawling while I sang "Life's a Happy Song" and clucked along with Camilla the Chicken's rendition of Cee-Lo Green's "F**k You."

He was still crying when I parked in front of our building.

Still crying in the elevator.

As soon as we were inside our apartment, I pulled his hat out of the closet.

"See, here's your hat. It's not lost."

Ryan maintained his own set of facts. He cried, "MY HAT IS LOST!"

I showed him the Mickey Mouse sweatshirt. "See, this is what you wore this morning. It's right here. Everything's ok."
He just kept crying.

At a loss for what else to do, I brought him to his room, covered him with a blanket, and told him to come find me when he was ready to be rational.

Bock bock booooock.

Homework sucks

2012-01-11T10:06:00.001-05:00

I don't remember dreading homework as a kid (I'm sure my mom will correct me if I'm wrong here). My memories of homework are more of a chore - it was something time-consuming to get out of the way so I could do something more fun.

Now, as a parent trying to get a kid to sit down and fill out worksheets, I dread homework.

I guess I never really understood the extent of Ryan's learning disabilities until I had to figure out how to add -ing to words.

Monday's homework started with reading a nonfiction story about a mother fox and her baby (I learned something new! A baby fox is called a kit!). Fine, that part was painless.

Then Ryan had to complete some vaguely-related worksheets.

Step 1: catch Ryan, get him to stay at the table. You! Hey you, the one bouncing off the walls! Get over here.

Step 2: sensory break. Administer deep-pressure input. Have Ryan walk around the table on his hands.

Step 3: get him to hold a pencil properly. No, a pencil is not a rocket ship. No, a pencil should not be waved sideways in front of your face. Get that pencil point away from my eye!

Step 4: get Ryan to ~~look at~~ notice the existence of the worksheets.

Step 5: explain the first exercise. The worksheet says "Add -ing to each word. Write the new word on the line." There are five words (help, look, fix, lick, play) and five lines - wide-ruled, with a dotted line in the middle to guide penmanship. I pointed to the first word. "So here you would write, 'helping.'"

After much prompting, Ryan wrote "iG."

We will try again.

And again.

I print the word "helping" in small, neat letters, then ask Ryan to do the same; his pencil is waving in front of his eyes again.

I put Ryan on my lap, squeeze him tightly, bribe him with chocolate chips.

He's not getting it. I decide to move on to the next section.

The next part of the first worksheet says, "Use the words you wrote to finish the sentences. Write the words on the lines." There are some cryptic cartoons with incomplete captions, taunting us with those wide-ruled lines.

"Jan is __________ at the cats."

I point to the first drawing. Jan is a ponytailed zookeeper. She is leaning on a railing, smiling at lioness and her cub in a cage. The whole picture is less than two inches wide.

"What's the lady doing?"

No response. Pencil stimming.

I take away the pencil. "What's she doing?"

"Hey, give that back!"

"First let's look at this picture..."

On that whole first worksheet, Ryan managed to fill in one of the ten spaces.

We took a long sensory break, came back, had slightly better luck with addition, and then I decided we had suffered enough.

We will try again this afternoon.

And every afternoon for the next 11 years.

Where's my wine?

Everything old is new again.

2012-01-05T09:07:00.000-05:00

That damn yellow chick is missing.

Again.

Still.

Remember the weeks and weeks of anxiety that started this summer about various lost toys? Remember the relentless meltdowns every time Ryan remembered that his yellow chick / giraffe / cow / frog was gone?

I thought we were past that. I thought he was over it.

I should never underestimate this boy's memory.

Returning to school after a vacation tends to churn things up in Ryan's head. For the couple of weeks it takes him to transition back to the school routine, we tend to see lots of regressive behavior - more meltdowns, more scripting, and sometimes the return of weird phases we thought had passed for good.

So this morning, while Ryan was fretting about the pain his loose tooth is causing him, it should not have shocked me when he let loose an anguished wail and screeched, "The yellow chick is lost! Got to find it, Mommy!"

Yes, you lost it on the school bus last July.

No, we can not find it.

Let's table this conversation for another six months.

Dirty little secret from a Published Author

2011-12-31T22:25:00.000-05:00

I have a confession: I'm not an expert. At anything.

In the couple of months I've been a "published author," I've learned that having your name on the cover of a book lends you an aura of legitimacy, whether or not it's deserved.

Because of the book, fantastic opportunities have been coming my way recently - write an article for our magazine! join a committee to help make our museum exhibit more autism-friendly! come talk to our support group! - and I'm totally in awe. I'm grateful as hell, but I feel like I need to preface my participation with huge disclaimers:

- I have no academic background in this stuff, unless you count Google University. I'm an MFA, not an MD or a PhD.

- I only have first-hand experience with one child, and he swims near the shallow end of the spectrum. And some days I want to sell him to the circus.

- I've only given a handful of in-school talks, and I modeled half of my talk on one recounted in someone else's blog.

But hey, if you're cool with all that, I'm happy to take that brilliant opportunity you're throwing me. Let's go!

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Shameless plug: Ben Has Autism, Ben Is Awesome is available direct from Jason and Nordic Publishers.

Best. Chanukah Party. Ever.

2011-12-23T09:14:00.000-05:00

*ding dong*

"Hi, random neighbor downstairs. Would you like to come over and share some of our latkes right now? Oh, you're not as spontaneous as my kid? Oh well."

*ding dong*

"Hi, random neighbor..."

For the second night of Chanukah, Ryan and I made some latkes. Latkes are best when they're fresh out of the pan, so I rang my friend Peggy's doorbell and invited her to come down the hall and have some with us.

One grown-up guest was clearly insufficient for Ryan. My pleasant conversation with Peggy was interrupted by several cries of "We've got to FIND everybody!"

"Do you mean you want to invite more people over for potato pancakes?" I asked.

"Yes!"

"Who should we invite?"

"We got to find EVERYbody!"

When Ryan started walking up and down the hall, still wearing his blue Chef in Training apron, calling "EVERYbody, where ARE you?" I realized I had to get involved.

We started walking the building.

Our next door neighbors weren't home. The kid at the end of the hall wasn't home. Ryan's buddy Jason wasn't home. Alison was home, but confessed she doesn't like latkes. More rejections. Things were looking dicey.

We eventually found a willing and available guest: 22-month-old Aiden and his mother. After they had eaten enough latkes and applesauce, Ryan asked little Aiden, "Can I play with you?"

Whoa.

I found some toddler-safe toys, and the boys ran around and shared pretty well and were having a wonderful time.

At some point Ryan bumped into Aiden and scared him, and the poor little kid started crying. I pointed out to Ryan that he had scared the baby. Ryan became visibly concerned. He said to me, "Got to make him happy!" Then he turned to Aiden and said, "Got to make you happy!" He immediately got to work covering Aiden in kisses.

No surprise, I got a little teary.

When it was time for our guests to leave, Ryan said appropriate goodbyes and did not get upset. He was delighted with the party he had just thrown.

Hands-down, this was the best spontaneous 15-minute Chanukah party I've ever had.

What have I gotten myself into?

2011-12-21T14:53:00.000-05:00

Somehow I have acquired five part-time jobs, only two and a half of which pay.

My monster making / quilting business is doing well enough that I have four monsters, a quilt, and a penguin to finish.

I assist a project manager, mostly from home.

I'm promoting my book. (Have you heard about the book?)

Starting in January I'm on the Board of Directors of my roller derby league, in charge of PR.

And there's skating, which takes up as much time as a part-time job.

And what am I doing right now? Writing about what I have to do, instead of just doing it.

In his misery, I found great joy

2011-12-19T08:36:00.000-05:00

Part of our bedtime routine involves Looking At The Calendar. It's a big monthly calendar taped to the back of Ryan's bedroom door. We put little pictures on it to represent whatever is coming up - school, Chrissy Time, holidays, haircuts, my practice schedule - so he knows what to expect. The calendar is also a sticker chart, so as he crosses off each day he adds whatever sticker he has earned, and it's easy for him to see how many more stickers he needs to get a prize.
Last night at calendar time, Ryan crossed off Sunday and started counting how many stickers he had earned. He counted back a day and started sobbing, pointing and screeching at Saturday. At first I thought he was upset he had not earned a sticker that day, but then he told us the problem: he had missed a birthday party.

On Friday Ryan had come down with fever and a runny nose. I told him Friday night that if he was still sick in the morning, we would have to skip his cousin's birthday party. He looked at me hopefully and said, "We CAN go to the party?" I told him we would have to wait and see.

Saturday morning he still had a fever, and I announced we would be staying home to as not to infect the birthday boy and his friends. Ryan was miserable enough with his cold that he seemed content with that.

But on Sunday night, looking at the little picture of a birthday cake I had drawn on the calendar, Ryan was devastated. This was the first time I had seem him demonstrate any sort of desire to go to a party at all. I asked him what aspect of the party he was most upset about missing.

"Is it the playing with other kids?"

"Yes!" he sniffled.

"Is it the balloons?"

"Yes!" he wailed more emphatically.

"Is it the cake?"

"Yes!" Tears and snot soaked into my shoulder.

"You're disappointed, I understand." I hugged him tightly. I suggested we could have our own party after school Monday, even though it wouldn't be the same.

And in Ryan's misery I found great joy: the joy of my child experiencing a perfectly typical feeling, for a perfectly typical reason. The joy of knowing that he really does want to interact with other kids, even if he's not always sure how to go about it.

Now I have to thaw some cupcakes and pick up a few balloons.

The Great Marshmallow Caper

2011-12-13T18:22:00.002-05:00

My little wheat tweaker is in heavy withdrawal. Imagine an adult trying to quit smoking - that's my six-year-old. Irritable. Thin-skinned. Crabby. I had to scrape him off the pavement to get him onto the bus this morning, and I'm told the school day didn't go much better.

I had been trying to think of a fun way to kill some time in the afternoon without angering the beast. The answer came to me while flipping through a parenting magazine in a waiting room this morning. I came across a suggestion for a fun little experiment you can do with your kids: put marshmallows in the microwave for 30 seconds and watch what happens. What could possibly go wrong?

When Ryan came home, I told him my plan: we would walk to the drug store, buy some marshmallows, and bring them home for our experiment. He seemed game for it.

We walked to the store without incident. The whole way, Ryan was telling me that we were going to the drug store and were going to get marshmallows. He was on task. All was going according to plan.

Then we walked into Duane Reade.

One step into the store he started crying, shrieking "They do NOT have any marshmallows!" I tried to calm him down. I explained that we hadn't even gotten to the part of the store where they keep the marshmallows.

"Aaagh! Where ARE the marshmallows?"

As calmly as I could, I told him we would look for them in the store, and if the store didn't have them, we would just go to another store. This was moderately acceptable to him.

The drug store did not, in fact, have any marshmallows. The manager said they only carry them in the summer. (We live in a city; I think the locals are far more likely to put marshmallows in their hot chocolate than to go build a freaking campfire on their fire escape. But what do I know?)

"That's ok," I tried to convince Ryan, "we'll walk to the second drug store." He just barely held himself together for the one-block walk to CVS.

But they didn't have marshmallows, either.

I dragged my crying, whining kid out of the store, calmly telling him if he doesn't shut the hell up we're not getting any damn marshmallows. We worked on some deep breathing exercises. I squeezed him as hard as I could. We took our time.

Giving up was not an option: Ryan would have spent the rest of the night fretting about how we hadn't completed what we had set out to do.

We took some more time before walking into a small market, which also did not have any marshmallows.

We chanted "we're calm, we're calm" all the way to the small grocery store down the street, which, as luck would have it, also did not have any marshmallows.

I told Ryan we had one more store to try, and if that bodega didn't have marshmallows, we would get our car and drive to the supermarket. At this point he was beyond frustrated, and a cold wind wasn't helping. I coached him to walk backwards into the wind. This was silly enough that it distracted him from his frustration. Then I instructed him to spin in circles while walking; he giggled and delighted in being dizzy.

We walked calmly, even happily, into the bodega. And on the top shelf in the aisle on the left, there were a dozen beautiful bags of big, fluffy marshmallows. I gratefully paid for them, and Ryan clutched the bag all the way home.

All is well with the world.

And I highly recommend putting a few marshmallows in the microwave for 20-30 seconds. For extra fun, draw some faces on them first with a marker.

One week down, one to go

2011-12-12T11:20:00.002-05:00

This bout of wheat-exposure hasn't been nearly as bad as the last time. He has been more tantrum-prone and his attention span has been shot, but he has not lost his language skills or his connection to other people. Stu thinks his language may even have improved somewhat, but I am not convinced.

The week has been rough, but it could have been much, much worse. And for that I am grateful.

In just one more week, we should be ready for proper social interaction. Or, you know, as close as we ever manage.

Just a Little Bit

2011-12-06T12:07:00.001-05:00

At a family party this weekend, Ryan nibbled on someone's wheat hot dog bun. A whole roomful of relatives who know he is allergic to wheat watched him do it. When Stu turned around and realized what had just happened, he yelled at one of the relatives and asked why the hell she hadn't stopped Ryan from eating someone else's bread, she calmly replied, "It was just a little bit."
There's no such thing as "just a little bit" of a food allergen.

Ryan's reaction to wheat doesn't look like a typical "allergic reaction" - there are no rashes, no blisters, no sudden loss of the ability to breathe. You could look at him right after he has eaten wheat and think he was perfectly fine.

Here's the problem: Ryan's body does not break down wheat proteins completely, and his brain interprets the partially-processed amino acids as an opiate.

About two days after wheat exposure, he gets stoned.

And while he's stoned, he is less able to function. His language skills disappear. His social skills disappear. His bladder control disappears. His concentration is shot. The meltdowns come rapid-fire.

It's a freaking mess.

And then his body goes through withdrawal. Remember when I tried cutting gluten from my diet, and I wanted to cut people? Yeah, it's like that, but without the rational understanding that this awful feeling shall pass.

The whole reaction event, from exposure through withdrawal, takes two weeks.

Two. Weeks.

So if you see my kid eating someone else's food, stop him, because 1) it's rude; and 2) an allergy is a big deal, even if the bite he takes is small.

(Today is Day 2 - behavior has been a little off, but I'm not ready to conclude that's because of wheat exposure. We have to wait and see.)

One Ringy Dingy

2011-12-02T07:10:00.001-05:00

Last night, Ryan had his first real phone conversation.

We had been playing outside, and Ryan tripped on the sidewalk and skinned his knee and elbow did something to his fingers that could only be cured by slobbering all over them. He cried all the way home.

As he nursed his wounds with his magical healing White Blanket I tried to distract him by reading him a book. Halfway through the story, my mother called. To keep Ryan distracted, I turned on the speaker phone function.

"Do you want to say hi to Grandma?" I asked. I expected he would say "Hi, Grandma" and then tune out, or just say Yes to whatever Grandma asked him.

I was wrong. So wrong.

Unprompted, here's what poured out of his mouth (all in a dramatically sad tone):

"Hi, Grandma. I tripped and fell on the sidewalk and I hurt my knee and I put a bandaid on it and White Blanket feels much better."

Whoa.

Grandma, in shock and awe, tried to keep the conversation going. Ryan maintained his dramatically sad tone and provided a few perfectly appropriate Yeses.

So, for the record: Age 6, First Phone Conversation.

There's nothing our kids can't accomplish.

Manah Manah

2011-11-26T08:13:00.001-05:00

If you know me at all, you know I am a Muppet fan. Jim Henson is my ultimate role model - I can think of no better embodiment of creativity and wonder and all that is beautiful about human potential. I once stalked Frank Oz when he came to a show at a theater I was working at just so I could chat with him for a moment in the lobby. The greatest failed job interview of my life, for an internship with the Henson Foundation, brought me into the fabled Henson office on the east side; more than a decade later I can describe every feature of that brownstone in excruciating detail.

I have been imposing my Muppet agenda on Ryan since infancy. He has grown up on a diet of Sesame Street, Fraggle Rock, and The Muppet Show. I am more than a little proud that he likes to turn random objects into puppets (though I could do without the talking toilet seat).

So it goes without saying that I had to take Ryan to see The Muppets in the theater opening weekend. He loved it. We lost him a little at the end (he started yammering loudly during the last, and quietest, scene), but he left the theater singing Manah Manah and the Muppet Show theme song, so I count that as a victory.

As a Muppet purist, though, I had some serious problems with this movie. While there were lots of great elements (including a perfect cameo by my gay Hollywood boyfriend, NPH), and overall I'd give the film a B, there were things that went against the spirit of the Muppets, and which caused me great distress.

Spoiler Alert! Spoiler Alert!

For one thing, the Swedish Chef should never have subtitles. He does not need translation. And neither does Camilla (Gonzo's chicken girlfriend).

Also, if the Muppets have to kidnap a celebrity to host their telethon, by the middle of the show said celebrity should embrace what's going on; having Jack Black object to his fate the whole time seemed out of the spirit of the Muppets.

There was a bit too much snark, a bit too much "we know we're in a movie" shtick. Uncharacteristically lowbrow humor. Penguins singing in English. CGI when animatronics would have worked. Wrong wrong wrong. It's too bad Frank Oz and Brian Henson were not on board for this project - they could have righted the ship.

But it had heart, and a song that's been stuck in my head since yesterday, and has probably turned a new generation on to the magic of the Muppets, so I'm going to try to let go of my objections and embrace the new Muppets.

Magic Brainstem Doohicky

2011-11-16T08:24:00.001-05:00

This will make me sound like the worst parent in the world, but I kind of like it when Ryan is sick.

It's not just because a sick kid bounces off the furniture less and is easier to control. It's because a fever reduces a lot of the hallmark symptoms of autism.

See, there's this doohicky in the brainstem. It regulates fever, and it also governs the release of the neurotransmitter noradrenaline, which is critical for paying attention to your environment. It also contributes to the symptoms of opiate withdrawal, which is what someone like Ryan experiences after accidentally consuming wheat products. There was a great article in Time about this magic brainstem doohicky -go read it, it's good stuff.

So for the last week while Ryan has been running a fairly high fever (it turned out to be strep throat), I basked in his sudden ability to communicate. When a toy went missing, Ryan used complete sentences to tell me precisely where to search - "I think it's behind the cubbies. Can you find it, please, Mommy?" When presented with a choice of two lollipops, he was able to pick one easily - he didn't start by choosing the empty space between them. He was cooperative, generally content, and willing to try to talk to his grandmother on the phone.

Now, if he could do all that without the 103.6 degree fever, we'd be golden.

The perfect pick-me-up

2011-11-13T20:18:00.001-05:00

I spent most of today on the couch, hiding under a pillow. Ryan's been running a high fever all weekend, and my body is fighting whatever he has; I feel like I got sideswiped by a truck.

From under my pillow, I heard Stu trying to get my attention, saying "Honey, it's time to pull yourself together and get excited."

I peeked out. Stu was holding the world's most thrillingly beautiful padded manila envelope. Inside were six paperback copies of Ben Has Autism, Ben Is Awesome.

"It's your book!" he cooed.

My book.

Please excuse the mess. And the unwashed hair. Ah, screw it, no excuses. Deal with my mess!

Breathe.

Nearly two years from when I had written it.

My first book. In my hands.

Yeah, you know I cried. It would be a more surprising story if I hadn't.

I read it, pointed out the things that weren't exactly as they were supposed to be, breathed, sniffled.

My book.

Instantly cured for the moment, I showed a copy to Ryan. I showed him my name on the cover. He read the dedication: "For Ryan." I read to him. I read him the book I wrote for him and for kids like him. I don't know if Ryan liked the book, but he paid attention, which is as much as I could hope for on the first read of a new book. I imagine we'll be reading it again. He made a monster face when Ben made a monster face. He made an elephant sound when Ben made an elephant sound. He seemed to identify with Ben - they have a few things in common, you know...

Artwork (c) Rebecca Rivard

As I read the word Autism aloud, I wondered if my message would actually get through to Ryan. I imagined other parents struggling to say that word in the presence of their ASD children for the first time. I hope this book will make that conversation easier to start.

Ben Has Autism, Ben Is Awesome is available direct from Jason and Nordic Publishers in both paperback and hardcover. Pick one up for a child in your life, or donate a copy to your local school or library!

The Look

2011-11-09T08:52:00.000-05:00

10/21/11 - Ryan did very well across the street in math today. Although I had to refocus and redirect him a few times but he did well with today's lesson. - Mrs. B.

I thought Ryan was doing well with his new math class. Mrs. B wrote positive, reassuring things in his notebook.

At our IEP review meeting this morning, I got a very different picture.

I requested this meeting so we could make the inclusion math class an official part of his individual education program, so that the school district would be required to have a staff member consistently available to take him to the class.

I sat down at the meeting with my agenda in mind: consistency, increased interaction with typical peers, get Ryan out of that tiny room full of screaming children. The whole team was around the table: speech and occupational therapists, Mrs. B, Mrs. W, school psychologist and her interns, liaison from the Board of Ed. We had leftover Halloween candy and a basket of cheery purple pens.

I thought I was ready.

Someone asked how Ryan is doing in the inclusion math class. Mrs. W gave her impressions: Ryan spends most of his time in class scripting. Loudly. "He's very disruptive to the class. All the other children keep turning around to look at him."

All the other children keep turning around to look at him.

I tried to hide my leaky eyes.

Mrs. B added that for most of the nine sessions Ryan has had in Mrs. W's math class, Mrs. B and her assistants have pulled Ryan out of there after 10 minutes or so because of his inability to focus. This should not have been news to me. Ryan's communication notebook should reflect what's actually going on, not tell me rosy stories giving me false hope about his progress.

My eyes were on fire. I was quietly choking.

We had a rational discussion about the purpose of putting Ryan into Mrs. W's class: to provide opportunities for interaction with typical peers. We agreed that math is not the best forum for such interactions. We noted that Ryan is receiving the same academic content in his 8:1:2 class as the other first graders are getting, just in an individualized setting. We agreed that Ryan lacks the social readiness to properly participate in integrated math. We agreed to find additional opportunities, such as art, lunch, or recess, to work on this goal. We agreed to table the matter of changing Ryan's IEP until various schedules could be coordinated. I thanked everyone and got the hell out of the room as quickly as I could.

In moments like this, I just hate autism. I hate knowing how hard it will be for my baby to integrate with other kids his age. Why does this have to be so hard for my baby? I know Ryan doesn't care what teachers like Mrs. W expect of him, but that's part of what being a member of a society is about: to be a functioning member of society, one must understand the concepts of authority and expectations - that there's a time to talk and a time to listen.

I know that the committee hit upon the proper, rational course of action, but my heart just stops when I imagine a roomful of typical first graders turning around to stare at my baby. Please, someday, let him fit in.

The difference a week makes.

2011-11-04T11:14:00.000-04:00

Remember how hard last week sucked? That post directly below this one? The boy's understandably awful behavior and inability to concentrate in math?

In the midst of all that for some reason, I decided to try cutting wheat out of my diet. I had read an article about why so many more people are sensitive to gluten these days, and I learned that thanks to genetic manipulation by the good folks at Monsanto, wheat now contains something like 500 times more gluten than it did a generation ago. Reading the list of symptoms of gluten intolerance, I decided to give wheat-free living a week to see if it made any difference in my life.

My first sign that perhaps wheat had been having an effect on me was that on my second wheat-free day, I went into withdrawal. Fatigue, intense food cravings, mood swings, the whole bit. Days of dragging my feet and feeling like crap.

One week later, both Ryan and I are better than ever before.

Ryan's teacher called yesterday to report that Ryan had gone two days at school with absolutely no scripting at all. He has been focused on his work, making lots of appropriate eye contact, and answering questions verbally.

Outside of school, he's also been pretty freaking fabulous. At the park the other day, he was playing beautifully with a little boy he had never met before. They were running around together and laughing. When another child started throwing snowballs, I encouraged Ryan to try joining in. He scooped up some snow with his bare hand (this boy usually insists on gloves for all winter activities), threw it appropriately at his friend, smiled at him, and said "Got you!" And he didn't get upset when he got hit in the face with snow.

And as for me, I'm out of withdrawal and filled with more energy than I've had in forever. I'm focused, I'm less forgetful, I'm getting stuff done. I really don't want to be gluten free forever - as a native New Yorker, I can not imagine life without proper bagels or pizza - but I can't deny that I feel great.

For Ryan, the difference might also be a change of diet. I've been trying to think of anything at all that has changed in the last week that could have contributed to his sudden progress at school, and the only thing I could think of is that he's been gorging on Halloween candy. Maybe a little extra chocolate is good for you?

You're welcome to use that excuse for yourself, too. Off to raid the plastic pumpkin...

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Shameless plug: I'm also in a great mood because my book is finally available! Please check out "Ben Has Autism, Ben Is Awesome" from Jason & Nordic Publishers. I hope this picture book, beautifully illustrated by Rebecca Rivard, will be a useful tool to help parents start talking about autism with their children on the spectrum, as well as to help typical kids better understand their ASD peers. Order a copy for yourself or for your local school's library!

In Which We Pretend Ryan is Typical

2011-10-28T10:40:00.001-04:00

For the last week or so, Ryan has been nudged into typical first grade. An aide has been taking him to an inclusion class in the main building for 45 minutes a day for math class.

So far, it's not going well.

Ryan's school experience up to this point has been very different. He's been in a room with no more than seven other kids and with at least three adults at all times. In his regular class each student has his own Individualized Educational Plan and works on his own lessons at a little table with a teacher or aide sitting next to him to keep him on track.

Now, his math class has one teacher and about 20 kids. All the kids sit at their own desks and face the teacher. Mrs. W. talks and the kids are expected to listen.

And among these tidy desks and orderly, forward-facing, listening children, there's my kid. Scripting away. Reciting the cannon of Mo Willems or his favorite episode of Fraggle Rock, eyes on the ceiling, laughing like a maniac. An aide sits with him and tries to keep him focused on math (and from being a distraction to the other kids). But, as his teacher wrote in his notebook, "We're going to keep trying. This is going to take patience."

The bigger problem, as far as I'm concerned, is that while Ryan is getting used to any major transition, he turns inward more and more throughout the day. More scripting at home, more strange behavior, ever harder to get him to visit our world.

And since this math class is not part of Ryan's IEP, there is no dedicated staff member assigned to take him there every day, so when the school is short-staffed, they just don't take him. The lack of consistency makes the transition infinitely more difficult. More scripting, more throwing flashlights out the window, more accidents, more grunting instead of speaking.

So next week I have to meet with someone from the Board of Education to work on updating Ryan's IEP so that the school will have to provide an aide to bring him to math class every day. If this can't happen, I'd rather sacrifice the educational opportunity of joining the typical kids for math than sacrifice the consistent routine. Ryan can get used to a new routine, but he can't adapt to a sudden lack of routine.

At Ryan's current level of distraction, I don't know how we're going to get him through Mrs. W's big typical-kid homework assignment that's due Monday. He came home with this 13-page "My Book About Me" packet, in which he's supposed to answer questions like "My birthday is in ____" and draw pictures of his family and his house and his favorite food. I imagine a typical child could bang this out in half an hour, but it could take us that long to get Ryan to focus on writing his name. And this is a child who has yet to answer a "What is your favorite ____" question. Ask him what his favorite animal is, he'll have no idea what to say. Ask him which of the two objects he's holding is his favorite, he still won't answer.

It's going to be a long weekend.

Quack of the Month: Brain Gym

2011-10-24T13:53:00.001-04:00

Earlier this month, a friend of mine was appalled to discover that her daughters' preschool had spent her tuition dollars having its teachers certified to teach a form of applied kinesiology known as Brain Gym. Promoters of Brain Gym say it is beneficial for all people of all ages, and many believe it has special benefits to people with special needs, including autism. Cue my investigation on the topic.

This child is doing a "Cross Crawl"

Like many pseudoscientific cure-alls, Brain Gym starts from a sensible idea, and then it goes waaaay too far. The sensible starting idea is that exercising the body is good for the brain, and that including physical activity in a child's day improves his or her academic performance. I'm down with that.

Where they go too far is their assertion that their set of 26 specific postures and movements will help develop neural pathways to connect the right and left hemispheres of the brain and increase the flow of "electromagnetic energy" throughout the body. For example, did you know there are brain buttons just under your collar bone? This video will show you how to push them to, um, turn on your brain. Stick around for the whole video and the lovely Australian lady will also demonstrate how to do an Energy Yawn.

For one thing, that whole left brain/right brain separation idea is a myth. You use neurons from all over your head at the same time.

Second, no truly scientific studies have been done on Brain Gym; the studies that Brain Gym's founders cite as proof of their accomplishments were self-published and not replicated by impartial researchers. As it says on the Brain Gym website's FAQ page, "The work is based upon empirical experience rather than neurological research." I have seen no proof that these specific exercises have any more benefit than playing tag or jumping rope.

Now, I don't know that Brain Gym would do a kid any harm, aside from filling her head with pseudoscience and misleading her about how her brain actually works. But Brain Gym is a business. A business that thrives on licensing fees from thousands of schools and preschools and therapy providers. According to a local instructor with whom I emailed, practitioners are sub-licensed to teach Brain Gym (at a cost of $200/year) and return 10% of their profits to the Educational Kinesiology Foundation (Edu K). The licensing process involves a significant investment of time and money: 200 hours of coursework (at around $20 per hour, this comes to thousands of dollars), six private consultations from a licensed Brain Gym instructor, and 15 case studies.

I'm exhausted just thinking about it.

Perhaps it's time for an Energy Yawn.

Recommended further reading: The Skeptic's Dictionary

Making friends is hard.

2011-10-20T22:07:00.004-04:00

Two kids I had never seen before were kicking a soccer ball around the patio behind my building. When Ryan noticed them he ran straight for them. Wow, I thought, he's going to play with new kids!

This is when I realized how many small steps Ryan still needs to master in order to successfully initiate playing with other children:

1) First, approach the children. Stand close enough to them so they can hear you when you speak, but not so close that it's creepy. Do not run headlong into one of the kids so you bounce off her and fall on the ground.

2) When standing at an appropriate distance, look at the children and say, "Hi, I'm Ryan. What's your name?" We practiced this several times, and the "what's your name" part mostly came out; the girl's name is Adrianna - we have no idea what to call her little brother.

3) Ask to join the game. Do not just ask someone's name and then stare.

4) When the children explain what game they are playing, figure out how to incorporate yourself into that game. When the kids say they're playing soccer, you may be assigned to a team, and will be tasked with either kicking the ball toward a goal or defending a goal. It is not appropriate to step back from the kids and act out that part of Mickey Mouse Clubhouse when Goofy is "practicing soccer" with a song and dance.

5) Play with the kids. If you ask to play with the other children and they say yes, they expect you will actually play with them; they do not expect you to wander off without further comment.

We have a few things to work on.

I will try to focus on the fact that Ryan was interested in playing with these kids - so interested that he actually asked me, "What's his name?" That was a big ol' first. I suppose that's the real Step One: noticing that other kids are playing and having the desire to join them. Now that we have that one, perhaps we can start on some of those five pesky follow-up details.

Two new reasons I'm proud of my kid

2011-10-11T20:58:00.001-04:00

Ryan's outgrowing his autism-only classroom. He needs typical kid models. He needs to interact with typical kids. He needs to get out of that creepy little room.

Starting next week, Ryan and an aide will go to an inclusion class at the school's main building for math class every day. He will also join that class for library time, which will provide even more opportunities for social interaction. I'm thrilled - and all that is one new reason I'm proud of my kid.

The other reason? My kid mouthed off at his teacher.

Mrs. B. told me about this in the context of "When he wants to, he can really talk." Apparently she was trying to get him to do something he didn't want to do, he got mad, and he shouted at her, "You're a stupidhead!"

At first when Mrs. B. told me this, I was appalled. I didn't even know that he knew such a word! But upon further reflection, I'm delighted that Ryan chose to use words to express his feelings. He didn't hurl himself against a wall. He didn't throw things. He didn't cry and scream. He used (naughty) language, addressed to the person who was making him angry.

It has taken three years of therapies to get Ryan to this day: able to express himself with words and without self-injury, on the brink of mainstreaming.

He's going to be ok.

He is ok.

He's more than ok.

How to Play: Stupid Ball™

2011-10-10T09:59:00.002-04:00

Ryan's favorite game is an activity of his own invention that Stu and I have dubbed Stupid Ball™. Here's how you play:

1) Select a toy that has a lot of (preferably small) pieces. For this example we will use 2" long rubbery bananas.

2) Note how many items you have. In our example, there are 24 bananas.

3) Hide your bananas all over the house. You may hide them in groups of no more than 4 items in a single location. You can reuse some hiding places you have used before, but try to get creative for at least two of your groupings.

4) Search for all the bananas.

5) Forget where you hid half of them.

6) Get frustrated. Cry. Have a tantrum. This is the most important step. Do not skimp here - be dramatic about it.

7) Get your parents to help you find the remaining bananas. "Helping" means finding all the bananas while you have a fit. Do not accept any results shy of perfection: finding only some (or even all but one) of the bananas is unacceptable.

8) When all items have been gathered, repeat step 3. Game can be played as many times as you wish.

Review and Give-Away: Seeing Ezra

2011-10-03T11:27:00.000-04:00

I recently had the pleasure of reading Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen. Through Cohen's parenting memoir, we meet Ezra, a little boy on the spectrum who will remind you quite a bit of Ryan - cute, charming, armed with a bucket of animals and letters. Like this blog, Cohen's story is less about her son and his challenges than it is about her - as a mother, as a wife, as a woman - learning to understand and accept her sudden recruitment into the autism army. It's a quick and pleasant read.

I found myself making little check marks in the margins as I found Cohen putting words to feelings I had experienced over the last couple of years. Frustration at sitting outside a party: check. Anger at strangers giving unsolicited advice and unnecessary pity: check. Seeking an escape route from this strange new life? Father with Aspie tendencies? Husband depressed because he wants to move? Check check check.

Cohen has few kind words for the parade of professionals responsible for conducting diagnostic testing; how can someone who has never met her son pretend to know anything about him without treating him like a data point, she argues. Seeing Ezra chronicles her internal journey to a place where she feels comfortable enough with herself to stand up to all the therapists who want to make her son "normal." She bristles at the idea that something must be done to fix her son, because she has never seen him as broken. He is perfectly Ezra.

I recommend Seeing Ezra, especially to ASD parents and to therapists who may need to be reminded that the kids they are working with are, first and foremost, kids - kids who like to play and laugh and who need nothing more than love.

Thanks to the generous folks at Seal Press, The Ryan Files will be giving away a copy of Seeing Ezra to one lucky reader. To enter, go to my Facebook page and write "Love is normal" on the wall. I will select a winner at random on October 18th. Good luck!

Princess Jane

2011-09-30T14:45:00.003-04:00

Ryan and Jane are classmates for the third year in a row. When we first met Jane, in preschool, she had no language. No words at all. She was like a wild animal - all grunting and shrieking and pushing her way through the world. But if you could get her to hold still for a moment, you could tell she was a sweet, lovable little person.

On Wednesday I brought cupcakes to Ryan's class to share for his birthday. When I walked into the classroom, Jane's eyes lit up. She ran over to me and threw her arms around me.

"Hi Jane! I'm glad to see you, too!" I said.

She pointed at the door. "Kadeen!" she announced. Kadeen was their teacher last year.

"Yes," I replied, "the last time I saw you was in Kadeen's class."

I read the kids a couple of stories, then broke out the cupcakes. The cupcake liners had little pumpkins on them.

Jane smiled and pointed excitedly at her cupcake. "Halloween!" she announced.

"Yes, those pumpkins remind me of Halloween, too. What are you going to be for Halloween?"

Jane pointed at her shirt. "Pih. Pih."

I wasn't sure what she was going for. I took a guess. "Something pink?"

She shook her head a little and tried again.

"Pih. Pih. Princess."

"Oh! A princess! With a crown?"

The teacher informed me that Jane was going to be having a Halloween party.

"Halloween party!" Jane agreed. She made a gesture that I think indicated she wanted me to come to her party.

Then she tugged at my sleeve and pointed at one of the boys in the class while asking "Halloween?" She wanted me to ask this boy what he was going to dress up as for Halloween.

I relayed the message. "Hey Craig, Jane wants to know what you're going to be for Halloween."

"Uh, a pumpkin," he replied.

Jane tapped my arm again and pointed to a different boy. "Halloween?"

She had me ask five different boys about their Halloween costume plans. The three that came up with any answer at all all said they would be pumpkins; I think that was the first Halloween-related word that came to their minds.

"Halloween party," Jane reminded me. "Princess."

I am so proud of Jane. She has worked so hard over the last two years, and has come so far. She has words, but more importantly, she has a newfound connection to other people.

I can't wait to see this beautiful princess, attended by her court full of pumpkins.

I can't say No to a bunny.

2011-09-28T10:19:00.000-04:00

The night before Ryan's sixth birthday, we assumed our regular bedtime positions: Ryan lying under the covers, me lying on top of the blanket holding two books. He chose which of the books I would read first - a strange story of little elves who make soup out of dirty socks. A few pages from the end, Ryan took the book from me. He never does this. He held the book over his head, studying the pictures - a perfectly normal thing to do, but totally unexpected for Ryan. He turned the pages, I kept reading.

When I held up the next book, Don't Let the Pigeon Stay Up Late, Ryan asked, "Can I read it?" Totally casually, like, you know, I always ask to read the book myself at bedtime.

Knock yourself out, kid.

So Ryan held the book over his head and "read" the whole story out loud from memory while I provided the requisite Greek chorus responses ("No! Go to bed, Pigeon!"). When he got to the part where the pigeon says, "My bunny wants to stay up, too," my heart melted.

It is very hard to say no to a bunny.

At the end of the story, Ryan handed me the book. He still looked pretty alert, so I asked if he wanted one last story. He looked me in the eye and said, "You can turn off the light."

I think my baby is growing up.

Happy 6th!

2011-09-28T09:36:00.000-04:00


2

Happy birthday, Ryan! Good job decorating that cake!

Almost Six

2011-09-23T09:01:00.001-04:00

Ryan will turn six next week. I don't think he knows.

We've certainly talked about it. We've showed him the little picture of a birthday cake on his calendar. We've tried to coach him to answer the questions "How old are you?" and "How old will you be on your birthday?" though without success.

Stu keeps reminding me that Ryan's agenda rarely has anything to do with ours, so I shouldn't get upset that we've never had the typical my-birthday-is-coming experience. No anticipation. No begging for presents. No expression of pride in being a year older.

We used to go through the motions of having a party at the ballpit with the kids from his playgroup, and while I guess he enjoyed climbing and eating cake, it's not like he ever played with his guests. Last year we had a couple of kids over for Ryan to ignore, and a family gathering from which he hid.

This year, we've kind of given up, and we're only having adult family members over; Ryan will not care. Maybe he'll enjoy his presents, maybe he'll ignore them. Maybe he will play with his grandparents and aunt and uncle, maybe he will tell them to go away and he'll play in his closet.

He will not be disappointed.

But I will be.

I keep reminding myself that Ryan is happy - the ridiculous grin on his face when he's playing by himself should reassure me. But part of me still wants to impose my agenda on him.

I want him to get excited about his birthday.

I want him to dictate a list of friends to invite to a superhero-themed party.

I want him to tell strangers "I'm gonna be SIX on Wednesday!"

I want him to ask us for some super-special toy that I don't know how to track down.

I want him to get so excited about his birthday cake that he sticks his finger in it and messes up the frosting.

On his first birthday, he totally got it.

He's my baby. My only baby. And I want to celebrate.

But mostly I want him to care about the same things every typical almost-six-year-old cares about.

Maybe some balloons will help.

Quack of the Month: Devi S. Nambudripad

2011-09-19T10:22:00.000-04:00

There are a lot of snake oil salesmen in the autism world. Parents desperate to do something to help their ASD children are easy prey for peddlers of pseudo-scientific "treatments" and "cures."

So in the first installment of what I imagine will be an ongoing series on this blog, I present September 2011's Quack of the Month, Devi S. Nambudripad and her NAET (Nambudripad's Allergy Elimination Techniques) system.

"Quack quack!"

In her 1999 book, Say Good-Bye to Allergy-Related Autism, Dr. Nambudripad argues that autistic symptoms are the result of a build-up of allergens in a person's developing brain in his first three years of life. This is not an uncommon line of thought - think of how Ryan's brain interprets wheat gluten as an opiate.

But then she goes too far.

Nambudripad's method for diagnosing and treating "allergy-related autism" is a bit different than just eliminating problem foods from one's diet. Her primary diagnostic method is a form of applied kinesiology: the patient holds various items in his hand and the practitioner pushes on his arm to test muscle resistance. If the arm offers little resistance, she says, the fault lies in the specific substance held in the patient's hand. So if my arm shows weakness when I'm holding a carrot, I must be allergic to the carrot.

As absurd as this sounds, it gets weirder: if the patient is a young child or is somehow incapacitated, a SURROGATE may be used for the muscle test! The practitioner tests the surrogate while the surrogate is touching the patient, and the patient's energy flowing through the surrogate will make the surrogate's arm weak in the presence of whatever the patient is allergic to.

Wow.

The treatment is derived in a similar fashion. The patient holds a dietary supplement in one hand while the practitioner pulls the other arm, and the degree of muscle weakness shows how many supplements should be taken. The NAET online store has many herbal preparations with names like "Allergy Help Plus" and "Pain Balance and More," each for around $25 per bottle. The average patient, according to the NAET website, requires 15-25 "treatments." Figure that your insurance probably won't cover this sort of thing, and you're looking at a hefty price tag.

Surely, if this were a viable method for treating autism (and pain! menopause! food allergies! eosinophilic esophagitis! heart palpitations! glaucoma in dogs! ulcerative colitis! psychic intuition!!! - seriously, check out the patient testimonials), I'm sure the wider medical community would have picked up on this sometime in the last 12 years, and researchers would have published their findings in journals more reputable than The Journal of NAET, Energetics & Complementary Medicine. Surely there wouldn't be such a long thread about it in the Museum of Hoaxes.

I'm going to call BS on this one.

Then again, maybe not.

2011-09-12T11:19:00.001-04:00

Some days are just too hard.

How many ways can I say "I don't know where your yellow and green shovel is because you buried it at the beach last week and lost it."

How many ways can I say "What did you think would happen when you dropped your puzzle piece in the crack between the patio squares? Did you really think I'd be able to fish it out?"

How many mornings will I be dragging my screaming, crying child down to the school bus, hoisting his kicking, twisting body up the steps?

There are days when it's really hard to stay hopeful.

Really hard.

When I feel like I'd be totally justified for leaving my kid at the park and heading home alone. When I feel like nobody could blame me for giving up. When I actually allow myself to ponder the big What If.

What If I had a typical kid? What If we just didn't have to deal with this crap?

I count the hours til bedtime, watch a funny movie, and hope that tomorrow morning will be better.

And then I drag my screaming, crying child down to the school bus again.

Perhaps he's starting to get it.

2011-09-08T10:18:00.000-04:00

"The animals can not watch Dragon Tales."

Ryan was calm when he informed me of this. It was a statement of fact - there was not a hint of sadness or regret in his voice.

Perhaps he's starting to get it.

His search for lost toys continues, though his moments of lost-toy-induced panic seem to have become an emotional placeholder for any moment of stress, frustration, or disappointment. It's like a (very very long) shorthand for "I'm upset." The panics seem to be becoming less about the hope of ever retrieving the toys and more about expressing an emotional state.

Perhaps he's starting to get it.

And in a major first, last night he stopped me from reading him a bedtime story and insisted that Daddy take over.

We are turning a corner.

In which Grandma goes all Mama Bear

2011-08-30T08:50:00.000-04:00

I got to spend several hours of Hurricane Irene blissfully doped up on prescription muscle relaxants.

Last Saturday I sustained my first real ("real" meaning during a game) roller derby injury: a wee little concussion. There was a pile-up, I don't remember how it happened, and I ended up as the filling in a skater sandwich.

So I have been resting. You know, as much as one can when home with a five-year-old all day.

After several days my head was feeling worse, not better, so I called my mom to watch Ryan so I could see a doctor. My mom insisted on driving me to my appointment, even though I had been driving just fine all week, which meant Ryan had to come along too.

You will be shocked to hear that Ryan had no interest in waiting around a medical building for two hours. Or that he had difficulty with the transition from sitting next to me to being dragged off to the cafeteria for lunch by his Grandma.

I was not there, but I imagine there were the usual theatrics: crying, yelling, throwing himself on the floor in protest. My mom ordered him to get up; he refused. She got stern with him; he was unimpressed.

Then an old man took the liberty of yelling at Ryan. "You get up right now! Raaagh! Raaaagh! Get off my lawn!"*

That's when Grandma whipped around and got all Mama Bear on his ass. Beautifully-manicured claws came out.

"You shut up!" she shouted at the old man. "First of all, you have no business yelling at this child you don't know. Second, you're yelling at a young autistic boy who...:

"Oh," the man interjected, suddenly apologetic, "I didn't know."

"Well maybe you should think before you start yelling at a stranger's kid."

My mom got some lunch into Ryan, and after that they had a lovely couple of hours waiting for me.

Nobody yells at my baby but me. And his Grandma.

*Like I said, I wasn't there for this part, so think of this as a dramatic reenactment.

He Talks!

2011-08-23T12:55:00.003-04:00

The boy doesn't want to play with me. Doesn't want me around him. Doesn't want me in the same room.

He's sassy, but he's using language to sass me, so I'm going along with it. To an extent.

When I suggested we might want to leave the house and go to the park, Ryan pointed sternly at my sewing machine and ordered, "You can sit back down in the chair and get back to that."

When I asked if I could work on his puzzle with him, Ryan glared at me and said, "Mommy, you can go over there." I'm not sure where "there" was, but it was certainly nowhere near the puzzle.

And the other day, when I annoyed him by telling him not to dump all the water out of the neighbor's kiddie pool, he told me, "You can sit down over there." When I didn't leave, he started to walk toward the street. When I yelled at him, he turned around and asked, "What's the problem?" Like, all casually, like he asks questions all the time. I don't care that it was a script, it was used perfectly.

And on those rare occasions when I'm not totally unwanted, Ryan's using words to communicate with me. Yesterday, after an hour of painting with water on a slate wall, Ryan stood back and asked, "You like it, Mommy?"

Yes, baby, yes I do.

Shameless promotion

2011-08-16T17:00:00.004-04:00

For those of you in the great NYC area, I invite you to check out Suburbia Roller Derby's summer season championship game this Saturday. And it's a double-header! It's a fun night out, and you might even see me get knocked on my ass...

Got to Get the Butterfly Net!

2011-08-13T17:56:00.002-04:00

Life has become a never-ending search for lost toys.

The Frog is still missing two parts, of course. Black-and-white cow has not yet emerged from that deadly lawnmower accident. Yellow Chick disappeared on the bus. The little green ball he had for all of 10 seconds is still stuck between the tiles on our patio.

And now his favorite plastic giraffe has drown at the bottom of a storm drain.

(He seems not to have noticed that two of his Dinosaur Train toys went missing a few weeks ago, or that we never recovered the stuffed dog he threw out the school bus window. And I'm sure as hell not going to be the one to remind him.)

The giraffe went down the storm drain moments after I told him not to drop his toys there. Aside from the predictable crying that ensued, Ryan hatched a couple of plans for how we could rescue the giraffe. His first idea (my favorite) involved scissors and a diving mask. Eventually he decided a butterfly net would be the tool of choice.

Ryan refuses to accept that all these toys are gone forever. Every day for the last few weeks has been filled with episodes of anguished mourning for his lost plastic friends, and no amount of rational explanation on my part can help.

The Encyclopedia Ryanica, Vol. 1

2011-08-11T20:13:00.004-04:00

Ryan may not be able to tell you what he did at school today or ask why the sky is blue, but he is a font of factual information. Whenever one of a handful of topics is mentioned, Ryan will tell you what he believes is most important for you to know; as he repeats these lessons with great frequency and consistency, it seems only right to share them with you here.

Here is Everything You Need to Know, according to Ryan:

On stop signs:
"Stop sign is a octagon, it has eight sides and four letters, S-T-O-P."

On zebras and tigers:
"It has stripes."

On milk:
"Cows love it."

On cows:
"Cows love milk."

On bananas:
"Monkeys love them. Bananas are yellow. They have stickers on them."

On butterflies:
"They got to turn into a caterpillar, turn into a cocoon."

On the letter C*:
"It's got to go between the B and the D."
* similar information also available on most other letters and numbers

Kvelling

2011-08-09T16:07:00.006-04:00

Ryan is working with Chrissy right now. Magical, omnipotent Chrissy.

Chrissy is asking him questions, and by God, Ryan is answering them.

How do you get to New York City? On the train!

How do you get to Florida? On an airplane!

What do you use to call Grandma? A telephone!

What picks up the garbage? A truck!

What do you need to turn on when it's too dark? The lamp!

What do you need to turn on when it's too hot? A fan!

Meanwhile, they're playing a sorting game that involves grouping little toys in various ways. Chrissy is finding challenging ways for them to clean up, like "Give me two things that live in the sea and two animals that live on a farm," and Ryan is keeping up with her perfectly.

Then Chrissy says, "Give me the crab, the horse, the truck, and the bread."

Ryan pauses, then asks her, "What was the first one?"

I'm in tears I'm so happy. When the pieces come together, the picture is indescribably beautiful.

The Frog is Missing Two Parts!

2011-08-05T09:18:00.000-04:00

"The frog is missing two parts!!!"

This shocking realization pops up seemingly out of nowhere every few days. And each time, it comes with emotion as raw as the first time Ryan made that horrible discovery.

A few weeks ago, Ryan threw his favorite plastic frog, a rubber ducky, and some sort of toy dog out the window of the school bus on the way home. When the bus pulled up in front of my house, Ryan was sobbing and in great distress. The bus driver told me that he had thrown toys out the window at some point, but neither she nor her assistant knew where or when this had happened. I asked her to describe the route she had taken so I could trace it and perhaps track down the missing animals, but we hit a language barrier.

Miraculously, after much driving around, we found the duck and most of the frog. The duck was in one piece. The frog, which had been broken to begin with (it had a noise-making thingy, and when the non-replaceable battery started to die, making the frog whine nonstop, I eviscerated it, leaving a big hole in the bottom, which I patched with packing tape), but now it was more broken. The poor thing had been hit by cars and lost half an inch of its rear end - I think this section once housed the frog's speaker.

A stickler for completion, Ryan considered our search and rescue mission an utter failure. We hadn't found the dog, and the frog was now missing its "tail." He cried pitifully. I told him that's what he gets for throwing his toys out the window of a moving bus on a busy street.

Now, every few days, whether or not the plastic frog is anywhere near him, Ryan will cry, panicked, "The frog is missing two parts! The frog's tail is in the street! WE GOT TO FIND IT!" Once I helped him fix the frog by plugging its holes with green Play-Doh, but all Ryan saw was a broken frog with Play-Doh stuck to it; this didn't help.

The boy has a long memory. Early this summer, he brought some animals out to the back yard to play with, and he accidentally left behind a Lego cow. A few days later, I discovered the cow had been run over by a lawnmower. There were several pieces left, but not enough to make a whole cow.

Now, every few days, Ryan will wail, distraught, that "the white cow with black spots is missing," and we've "got to find it." I explain that the lawnmower ate it and that he should be more careful with his toys. He cries with the intensity of a fresh wound.

I don't know if Ryan's sense of time is typical of a young child or if it's more characteristic of a child on the spectrum. Maybe he's a grudge-holder like his mother - sometimes I'll find myself ruminating on a 15-years-past slight and I'll get almost as angry as if I had just been wronged again.

Maybe he's working through the concept of permanent loss. Two full years after Dragon Tales went off the air, Ryan is still asking to watch it and play its related computer games. I refuse to rent the series on DVD because then he'll think I can pull the old games out of the air and I'll never hear the end of it. I'm trying to use Dragon Tales as a lesson in death.

Perhaps the frog will become a lesson in permanent injury?

We got to save the peacock!

2011-08-03T08:07:00.003-04:00

A peacock has escaped from the Central Park Zoo.

I made the mistake of reporting this news to Ryan this morning while we were getting ready for school.

Now Ryan thinks we're on a Nick Jr.-style animal rescue mission.

"We got to FIND the peacock!"

OK, I say. We can look for the peacock after school.

"We got to go to the zoo! We got to SAVE the peacock!"

I explain that the peacock is wandering around the city somewhere - it may even have walked all the way up to our neighborhood, right where the school bus is about to pull up, so why don't we go look for it in front of our building right now?

"We got to go to the zoo and find the peacock!"

So apparently I'm picking him up from school this afternoon and driving straight to the Bronx Zoo. There's an animal in trouble somewhere...

Goose-Geese

2011-07-29T08:12:00.004-04:00

Like most little boys, Ryan loves to chase geese. Unlike most little boys, Ryan chases geese with a clear goal.

The goal is to drive the geese into the water. The plan of attack is to separate the flock, picking off a couple of birds at a time to shepherd into the pond, then circling back for another pass, and another. He is very efficient at goose herding.

The other day, Ryan insisted on finding some geese to chase. "We got to chase the goose-geese!" We went to a park with a large pond where you can always find a flock of no fewer than 100 geese, and Ryan got down to business. When he had successfully herded all the geese into the water, rather than celebrating his success, he got pissed off that there were no more birds to chase.

He ordered the geese to come out of the water; they ignored him. Then he asked me to get the goose-geese back on land. I told him I have no control over birds, and that I can't make a goose do something it doesn't want to do; this was unsatisfactory.

There were also a few ducks in the water, including cute little ducklings, in which Ryan had zero interest. Ryan decided that the geese should be on this side of the water and the ducks should be on that side. He told them the plan, but they just swam wherever they wanted.

Boyfriend was getting genuinely frustrated and mad at the disobedient birds. I suggested that the geese might be scared of him, since all their encounters involve him chasing them, and that maybe we should hang back and ignore them for a while so they wouldn't be scared anymore. Amazingly, this worked. As soon as the geese sensed Ryan was not about to chase them, they emerged from the water.

Then he chased them right back in.

And then he got mad that the geese were in the water...

How to explain autism to a young child

2011-07-19T11:41:00.000-04:00

The best geared-for-kids explanation about autism I've ever read comes from the blog of Mom-NOS. She describes a world in which neurotypical brains are toasters, and autistic brains are hair dryers. In this world, the toaster-brained people have decided that the most important thing one can do is to make toast; those with hair dryer brains can try to make toast, but it will take a long time, and the toast will always look wrong. But there are some things a hair dryer can do far better than a toaster... It's a brilliant analogy - take a minute to read it in her words. I promise you it's worth it.

But if you don't want to launch into a whole long analogy-based story, here are some talking points for teaching a typically-developing child about his friend with autism:

- ____ has autism. That means his brain is wired a little differently than yours.

- There are some things that are harder for him, like talking, playing with other kids, or changing his routine. He's still smart, and he's still a good kid, he just needs a little extra help with those things.

- There are some things that are easier for him, like memorizing stories or hearing/seeing etc.

- Autism is something you're born with. You can't catch it.

- In most ways, we are all the same. We're all human, we all have feelings, we all love the people in our lives, we like to play with sand, we like eating ice cream...

- But every one of us is unique. Be proud of the ways in which you are different from everyone else in the world, and respect others' differences.

- To be a better friend to a kid with autism, be patient. Use fewer words when you speak, and give him extra time to answer you. Accept him the way he is. And try not to take it personally if he doesn't want to play the way you want him to.

You have to say something.

2011-07-18T12:26:00.000-04:00

Ryan was playing with his cousins at a big extended-family hoohah at my parents' house this weekend. Miller is 4, Ryan is 5, Dylan is 6. They went to the park together, played in the sprinkler, suckered us into a trip to the ice cream truck. A good day.

The boys spent a solid hour playing with a bucket of Moon Sand. I don't know what this crap is made of, but it somehow maintains the perfect level of moisture for building - we've had this bucket for a couple of years, and the sand never dries out. I'm sure it's somehow lethal.

Ryan, Miller, and Dylan redecorate the patio.

At one point during this hour, Stu and I were supervising. Dylan was using a medicine cup to make inch-high sandcastles. He announced that he was building a row of 10 of them. Ryan didn't get the memo, and he reached over, took one of the little castles, and crumbled it. Dylan got understandably annoyed.

"Ryan, stop it!"

I told Ryan to leave Dylan's castles alone. Stu tried to reassure Dylan that there was plenty of sand for everyone.

Ryan broke another castle. And another. I told Ryan to keep his hands to himself.

"Ryan broke my sand!" Dylan complained to Stu and me.

Despite our efforts, Ryan couldn't grasp the concept of "my sand" vs. "your sand." Dylan got understandably pissed off.

"You can't just break other people's things, Ryan!" he shouted.

"You're being mean," Miller said to Ryan, rallying to Dylan's defense.

"He's bad," Dylan told Miller. "Let's just ignore him. Let's not even talk to him."

All three boys continued playing with sand.

Stu whispered to me, "You have to say something," but I didn't know what to say, or who he thought I needed to say something to.

Dylan and Miller were being perfectly age-appropriate, but Ryan was unable to follow the accepted rules for how to play with sand, and they called him out on it. They were right: you can't just knock down other kids' sand castles; we've had this conversation before. Ryan didn't understand that he had done anything wrong, but I couldn't handle hearing NT kids call my kid "mean" and "bad" because of it, or saying "let's not even talk to him."

So I told Ryan to play with his own sand and leave other kids' castles alone.

Exasperated, Miller ranted at Ryan, "She doesn't need to tell you that 100 times!"

At this point, if I had been thinking rationally, I would have told Miller to mind his business. But I was choking back tears at this point. I sat on the patio near Ryan so I could intervene if he reached for Dylan's sand again.

After a few minutes, Dylan stared at me and asked me, "Why are you still here?"

It was just too much for me to explain why I was still on the patio. That yes, Ryan does need to be told things 100 times. That Ryan's not trying to be mean or bad, but he doesn't yet know how to play with other kids appropriately.

I made a hasty, tearful exit from the party.

When I later explained to my cousins what had made me so upset, Miller and Dylan's mothers said they were going to talk to the boys and try to teach them about autism. Miller's mom wrote to me, "I welcome your guidance on how to best get Miller to understand there are differences between him and Ryan. It's really new territory for me."

I was thrilled to hear this - these are truly the words every ASD parent wants to hear. And these boys are stuck with each other for life, so this conversation had to happen at some point. I've asked my cousins to consider writing a follow-up guest about how those conversations go. (No pressure, ladies.)

So, how can a parent explain autism to her young child? To be continued...

Praying for the Parents, Preparing for the Worst

2011-07-13T12:42:00.001-04:00

In local news, a nine-year-old boy in Brooklyn had asked to walk home from day camp for the first time, and his mother was waiting for him seven blocks from camp. Somewhere on those seven blocks, he was abducted. Police and the entire Hasidic community of Borough Park spent two days searching for him.

Today, his dismembered remains were found. If you want the gruesome details, read this article - it's too upsetting for me to repeat.

My thoughts, of course, are with little Leiby Kletzky's family. I can't imagine how one goes on with her life after such a tragedy.

The media are reporting that the Leiby had autism. This makes me wonder if autism made him more susceptible to abduction. Was he less able than a typical child to sense that the assailant he encountered was dangerous because of his social deficits? Was he more trusting? Did he get distracted on his way home?

Kids with autism are prone to wandering off (they call this "elopement" but it's not very romantic) and often have a limited sense of danger, so abduction is a very real concern. There are special techniques to teach ASD children how to handle stranger danger, but I'm not sure who offers this training.

Here are some resources worth looking into to protect your ASD child:

- About.com's tips to reduce the danger to your child.
- ID jewelery (though I can't imagine my kid actually keeping an ID bracelet on.)
- Personal tracking devices: see eSpecialNeeds, Amber Alert GPS, or Care Trak.
- Project Lifesaver's tracking system and training for first responders

Please, No More Acronyms

2011-07-12T09:56:00.003-04:00

It started with the drain.

A couple of weeks ago, Ryan became obsessed with yanking the drain stopper out of the bathroom sink. We kept telling him to leave the drain alone, but that made him all the more insistent that the stopper had to come out.

Then, Ryan started closing the drain tightly before washing his hands. He would let the sink fill with soapy water while he washed, and then walk away from the full sink without allowing the water to drain out.

Last week, while doing things that had nothing to do with the bathroom (as far as I could tell), Ryan started a new weird behavior: he would dash out of the room, run to the bathroom, slam the toilet lid closed, and run back to finish whatever he had been doing. Sometimes he would order Stu or me to stop whatever we were doing and open the toilet so he could close it.

These orders and behaviors later extended to both our bathrooms. As it stands now, at seemingly-random times, Ryan will get agitated and insist that both toilets, both sink drains, and both bathroom doors must be closed. And at other times, he won't care at all about these things - if he's actually using the bathroom, it's just as likely that when he's done he'll leave the toilet and door open (but the drain still stays shut).

And over the last couple of days, Ryan has started throwing things into the toilet before slamming the lid - a plastic box of wet wipes, his own foot...

So I've started reading up on pediatric obsessive-compulsive disorder. It seems that OCD and ASDs are often comorbid. One interesting note, according to Dr. James Copland: "People with OCD usually feel uncomfortable with their symptoms, and would like to be rid of them, whereas people with ASD usually are not bothered by their obsessions, and in fact may embrace them."

The treatment options are behavior therapy (which Ryan already gets at school), and/or SSRIs. Oh, the irony - fetal exposure to SSRIs may cause a need for later use of SSRIs... I guess this makes sense: if a fetus is discouraged from developing a normal way of shuttling seratonin around the brain, it will develop into a child that can not deal with seratonin normally.

I really, really hope Ryan isn't displaying symptoms of OCD. I don't need any more alphabet soup in this house.

An ASD Mother's Wish

2011-07-11T08:37:00.002-04:00

I wish I could crawl around inside your head
so I could finally understand.

I wish you could remember to use the words you know
and that we've drilled you on
time
after time
after freaking time.

I wish the world wasn't so painful for you.

I wish you could make a friend
a real friend
your own age.

I wish you could tell me about your day.

I wish everyone you'll ever meet
will see you as I see you,
as a compassionate
loving
sweet
generous
beautiful boy.

Prenatal Antidepressants and Autism

2011-07-05T15:00:00.002-04:00

When I'm working around the house, I'll often have crappy daytime tv on for background noise. The ads assume anyone home during the day is unemployed and/or disabled: train to be an ultrasound technician, get cash for your structured settlement, sign up for a Medicare Advantage plan, call a personal injury attorney.

I've falen...and I can't get up!

Lately, they've started playing ads that speak to me: call a lawyer if you took antidepressants during pregnancy and your child suffered birth defects. These ads, and the spam that fills my inbox, say taking Zoloft has been linked to heart defects, persistent pulmonary hypertension of the newborn, neural tube defect, craniosynostosis, clubfoot, cleft palate, limb defects, and anal atresia.

Autism is not one of the conditions in the ads, but I have always wondered what effect my taking antidepressants during pregnancy had on Ryan's development.

When I was pregnant, my doctor told me the general medical consensus was that the benefit of treating the mother's depression outweighed any known risks of fetal exposure to SSRIs.

Over the last five years, several studies have pointed to a possible connection between the use of SSRIs in pregnancy and the development of autism. The most recent, and most damning, came this week in the Archives of General Psychology. That study suggested that use of SSRIs during pregnancy - especially during the first trimester - can double or even triple the chances a baby will be diagnosed with an autism spectrum disorder. And it further noted that "No increase in risk was found for mothers with a history of mental health treatment in the absence of prenatal exposure to selective serotonin reuptake inhibitors," meaning it's likely that the problem lies in the drugs, not in the underlying condition that may or may not lead to the use of drugs.

That said, the vast majority of children with autism were not exposed to SSRIs in utero, and the vast majority of children exposed to SSRIs in utero do not go on to develop autism. There's a complicated mix of genetic and environmental factors at play here, and I look forward to the follow-up studies.

I believe I made the right decision to continue to treat my depression during my pregnancy. According to the American Pregnancy Association,

Depression that is not treated can have potential dangerous risks to the mother and baby. Untreated depression can lead to poor nutrition, drinking, smoking, and suicidal behavior, which can then cause premature birth, low birth weight, and developmental problems. A woman who is depressed often does not have the strength or desire to adequately care for herself or her developing baby. Babies born to mothers who are depressed may also be less active, show less attention and are more irritable and agitated than babies born to moms who are not depressed. This is why getting the right help is so important for both mom and baby.

Great risks, indeed.

I must keep reminding myself of those risks so I don't fall into the tempting spiral of self-blame for my child's challenges.

Everyone's fine. Now I'll tell you what happened.

2011-07-01T21:23:00.005-04:00

After two hours of intense negotiation about which animals could join us, Ryan and I went to the pool. This is a fancy-shmancy public pool with a lazy river, in the middle of a 161-acre park, filled with trails, ball fields, lakes, and woodlands.

We spent three hours at the pool, doing typical pool things. Then we headed for the playground just outside the pool's gates. Ryan started to run up a big grassy hill. I said, "Before you run off, let me grab my bag - don't go too far." I got my bag, and when I turned around, Ryan was gone.

At first I wasn't too concerned - this is hardly the first time Ryan has run off. I looked around for him, calling his name.

After maybe 15 minutes, I started to panic.

Five minutes later, I called 911.

A team of county police immediately arrived on bicycles and fanned out in search of Ryan. I walked around with an officer and screamed Ryan's name.

About ten minutes later, one of them radioed that they had found Ryan. They would be bringing him back to the playground.

I paced, waiting for them. "I'm going to kill him," I muttered to the cop who had been babysitting me.

"Please don't kill him in the park," he advised. "Wait til you get home."

Ten long minutes later, Ryan arrived, riding shotgun in a golf cart. They had found him over a mile away from the playground, near the Bronx border.

"He's pretty fast," commented one of the officers who had found him.

Ryan was smiling, oblivious to my anger, indifferent when I tried to explain to him why he can't just run off without me. I yelled at him in that same unsatisfying way I did when he ran into the street by himself - having no reason to believe my point had gotten through to him.

Both my mother and my mother-in-law suggested a stiff drink was in order. Who am I to question their advice?

Things are happening.

2011-06-17T10:00:00.000-04:00

Things are happening. Sentences are flowing, open-ended questions are being answered, I can see the gears turning in Ryan's head.

Before I can tell you the next part, I have to introduce a new character. Ryan has a new little friend named Jason. A very little friend: he's 2 1/2.
In a lot of ways Ryan and Jason are on the same level, but in other ways, Ryan likes to act like a big brother. The boys are adorable together. Often Jason is playing in the backyard when Ryan gets off the school bus. When Ryan sees Jason, he runs right to him and they start playing together (or sometimes just near each other) before Ryan has even taken off his backpack. Jason refers to Ryan as "my best friend;" Ryan is clearly happy to see Jason, but I've never heard him utter the boy's name.

And I like Jason's mother, so as the boys play, we're becoming friends as well.

So anyway, Ryan and Jason were playing in the backyard after school. Ryan had stepped off the bus with a fistful of tiny plastic sticks - they looked like pieces of some toy I've never seen. Ryan's teachers have taken to putting random toys in his hands to aid with the transition from school to the bus; once he came home with an assortment of 31 dinosaurs, trucks, and rubber duckies, but usually it's just two small toys.

As a typical 2 1/2 year old, Jason's impulse is to grab whatever Ryan has in his hands and run off with it. After Ryan showed Jason how to roll the sticks down a sloped sidewalk, Jason absconded with the sticks. Ryan went in pursuit, but by the time he caught up with Jason, three of the four sticks had disappeared forever between the patio squares.

Then magic happened.

Ryan stood at an appropriate distance from Jason, looked at him, and said, "Where did the sticks go, Jayden?"

(Yeah, that's not a typo. Jayden is the name of one of the boys in Ryan's class. Just go with me here.)

You get how big this is, right? Here's a recap of the magical parts:

1) Although he was annoyed that his friend had run off with his toy, Ryan didn't freak out. Using words was his first course of action.

2) He initiated a verbal exchange with another child. This is new and significant. Adults are much easier for Ryan to talk to because they are more patient and far more predictable.

3) He stood an appropriate distance from the person he was addressing, and he faced that person. On an average day, Ryan is more likely to speak quietly in a corner and then not understand why I'm not giving him what he wants.

4) He used a name in direct address. It happened to be the wrong name, but it was very close.

And as an addendum, when we established that the sticks were lost forever, Ryan didn't freak out. He accepted the loss and moved on, and continued to play with the child responsible for the sticks' disappearance.

Well played, kid. Well played.

Oh. My. God. (in the good way)

2011-06-16T13:40:00.005-04:00

Before I show you what I need to show you, I need you to read this post I wrote two years ago.

Really, go. I'll wait.

OK, so two years ago, Ryan's sensory integration issues were such that he was wearing socks and shoes at the beach and crying when the tiniest bit of sand touched his skin.

Now, two years and countless hours of therapy later, check out my boy:

Seriously.

This was entirely his idea, too. He saw a hole, climbed into it, and ordered me to bury him.

Whenever I'm feeling frustrated and hopeless, I'm going to meditate on that kid buried up to his chest in sand. He is filled with infinite possibility, endless potential. And he may be just a couple of years out of reach.

The Animals! Dear God, the Animals!

2011-06-16T11:00:00.008-04:00

The Animals have taken over our lives.

First they took over Ryan's bed.

Then they invaded the bathroom.

Now, they are everywhere. Unstoppable.

They play outside:

They use the computer:

They listen to music:

They watch tv:

They walk from room to room:

And they talk on Ryan's behalf. When Ryan is thirsty, he will hold up a dinosaur, pinch his mouth closed like a bad ventriloquist, and the dinosaur will inform me, "Ryan's thirsty." The animals will also answer questions when Ryan doesn't feel up to the task - they're very helpful.

We now return to our regularly scheduled life.

2011-06-14T09:35:00.006-04:00

Stu and I have been married for ten years. We dated on-and-off for three or four years before that. We have nothing in common, but things work well enough that we no longer need to speak to one another in complete sentences.

To celebrate our anniversary, we left Ryan with my parents and jetted off to Jamaica for a long weekend. The last time we had been in Jamaica was on our honeymoon. I could make it sound all romantic like we chose Jamaica because we had honeymooned there, but really, we booked this trip based on where we could get an easy and affordable direct flight from a convenient airport.

Our selection of hotel was based on similarly-practical criteria, like being close enough to the airport that we wouldn't waste too much of our vacation on a bus, staring at filthy shantytowns out one window and glittering resorts out the other, and feeling guilty about our good fortune to be able to vacation comfortably in paradise.

Our hotel boasts the largest water park in the country; this consists of two waterslides and a lazy river. Consequently, there were lots of families vacationing there. Watching other people taking care of their kids gave me a constant reminder to be thankful for my temporary lack of such responsibilities. I'm happy to watch adorable British children splash each other and play peekaboo with their placemats, as long as I am under no obligation to interact with them.

A break from responsibility. A break from autism. The freedom to walk along the beach whenever I wanted, or stay in bed as late as I wanted, or enjoy fruity rum-based drinks at all hours of the day. The chance to just sit and read - and to finish books in one sitting. A break from tantrums and reading food labels and coaching someone through putting on his clothes.

Three nights of perfect freedom.

Thanks, Mom and Dad, for babysitting. And for giving us a much-needed break.

A Follow-up

2011-06-09T12:14:00.002-04:00

A couple of weeks ago, my downstairs neighbor really pissed me off, offering me the age-old advice that my child's disability would magically disappear with a little discipline.

Yesterday, I ran into her for the first time since that encounter, and she instantly, unsolicited, offered a sincere apology. She had clearly been thinking about this a lot, and I have to give her the public credit she deserves.

We can make the world more hospitable for our kids, one softened heart at a time.

Don't Go

2011-06-05T20:29:00.003-04:00

I've been trying to write this paragraph for the last ten minutes, but it's almost impossible to verbalize why the moment I'm about to tell you about was such a big deal.

Today, Stu's parents came to visit, and when they announced it was time for them to go home, Ryan requested, "Grandma and Grandpa can stay." When they said that no, they really did have to leave, Ryan said, calmly and earnestly, "Don't go."

Saying "Don't go" is the natural thing you expect a person to do if they want someone they love to stay. It's that normalcy, that expectedness, that is so very surprising in this case.

Ryan used words as a means of communicating what he wanted.

He used these words without prompting.

He used these words as his first approach - he didn't start by whining or crying or throwing himself on the floor.

He used appropriate words that were not (as far as I can tell) a script pulled from a book/tv show/video game.

He used appropriate intonation to express his emotion.

And the thing that he requested was social interaction - he wanted his grandparents to stay and play with him.

It was a thrilling moment, and I am not taking this for granted.

The Logic of Bedtime

2011-06-01T10:19:00.006-04:00

Bedtime used to involve a very predictable cast of characters: Brown Bear, White Bear, Orange Bear, Blue Bear (with Car Bear), and White Blanket, all stuffed in the corner of Ryan's bed next to his pillow. Later, three moose joined this pile, with Gregory the moose placed at the bottom of the pillow, right under Ryan's neck. It was a finite, manageable list - check off all these items, and we're ready for bed.

All bets are off now.

Ryan has been experimenting with selecting new and novel friends to bring to bed each night. I'd understand if he chose soft, comfy things to sleep with, but Ryan's choices tend to be hard, pointy, or just plain weird. Recent bedtime companions have included a variety of plastic animals (horses, elephants, a lobster), foam snowman stickers, toy trains, a figurine of a knight with a sword, and a plastic ear of corn.

I think this grew out of a trick we developed to get Ryan to transition from playing to brushing his teeth. We would ask him "Whose teeth should we brush tonight?" and he would select a toy, bring it to the bathroom, and brush its teeth (or face, or whatever - most of his toys of choice don't actually have teeth). While Ryan would brush the toy, I would start on Ryan's teeth.

This worked perfectly for a while. Then it got weird.

Ryan started gathering two toys to brush. Then three. Then seven. Then when he was done brushing them he would have to line them all up on the sink counter while he went about his business. I would then have to scoop up all the toys so they wouldn't distract him or fall into the toilet.

Then Ryan figured out the logical next step: once the animal (or corn, or Connect Four box*) had brushed its teeth, it was time for it to get into bed. And not in the corner next to the pillow like a common teddy bear: one who brushes his teeth gets to sleep on top of the pillow, or in the middle of the bed, right under Ryan.

There's a certain logic to all of this. But it looks really uncomfortable to sleep on top of a plastic giraffe.

* I wish I was kidding about this one.

Stay in your lane.

2011-05-27T08:42:00.001-04:00

I just put a tearful Ryan on the school bus. I tried my best to figure out what he was crying about, but eventually I had to carry this sobbing mess of child to the bus and wave goodbye. It wasn't the first time, it probably won't be the last.

My busybody downstairs neighbor was walking her little drop-kick yappy dog (named Princess, of course) when the bus pulled away. This woman has an opinion on everything concerning how I should raise my child; when he was an infant, she admonished me for washing his clothes in the building's laundry room, declaring that it was full of germs and she would feel safer hand-washing a baby's spit-up-on onesies.

"What school does he go to? Oh, and he gets to take the bus! How lucky!"

I said something about how the school district's budget cuts mean only special ed students get bus service. Immediately I realized this was a can of worms I didn't need to open, but it was too late.

"He doesn't look special ed to me!"

Yeah, that's supposed to be a compliment or something, right?

"Well, he is."

Exhibit A; the boy participating in "Very Special Olympic Day," a field day for all the special ed classes in our district. BTW, he cheated at all the games.

"Where I come from," she declared in her lilting Jamaican accent, "we don't have all these special ed problems. We just give some good discipline and..."

At this point, I knew this conversation would go nowhere. I thought of the many elegant explanations I could give about the benefits of special education, or the observations I could make about living conditions in her native land, or the response I most wanted to give ("Where I come from, we mind our business.")

But instead I just said, "I don't want to hear this from you," and I walked ahead of her into the building, closing myself in the elevator before giving her a chance to ride up in it with me.

In the immortal words of one of my favorite daytime tv judges, Stay in your lane, I know how to drive this car.

---
Addendum

My favorite thing in the world this week...

2011-05-26T08:49:00.000-04:00

This makes it official.

I get to play now!

What do you want from us?

2011-05-24T17:59:00.004-04:00

"WHAT DO YOU WANT FROM US?!?"

There's a group of kids who play in front of the building across the street from us. They ride bikes and scooters up and down the sidewalk and attempt to play dodgeball on a six foot wide strip of grass. Ryan really wants to play with these kids. He chases them down the sidewalk, tries to initiate games of tag by running up to them and tagging them.

But these kids don't get him like the kids in our building do. They do not reciprocate when he makes it obvious he would like to play with them. They make no effort to include him.

And today, one snotnose little girl rode her bike as far from Ryan as she was allowed, repeatedly shouting "WHAT DO YOU WANT FROM US?!?"

I didn't want to discourage Ryan from his attempts at socializing, but I redirected his attention to an ant climbing a tree while I contemplated whether or not to react to the brat. I chose not to.

When most people think of an individual with autism, they picture someone who craves isolation and avoids human contact. But Ryan truly wants to interact with other people. He rushes up to literally every person he sees and shouts a hearty "Hi!" If he receives no response, he will just keep getting in their face and saying hi until the other person acknowledges him or walks too far away.

He wants to make friends. He just doesn't know how.

Ryan has not yet learned the unwritten rules of interaction that come so naturally to the average person. He doesn't understand the concept of personal space. He doesn't know how to approach another kid and ask if he can play, and he has no clue if the person he wants to play with isn't interested in him.

And I don't know how to teach him this. Suggestions?

Party! Party! Party! Party!

2011-05-23T21:35:00.003-04:00

When Ryan stepped off the school bus this afternoon, he was ready to party.

He declared his intention by reciting a Curious George script, in which The Doorman outlines for George what he needs to throw a party for the Man in the Yellow Hat:

"A is for Apartment, B is for your Buddies, C is for Cake, and D is for decorations!"

He repeated this a few times to make sure I understood.

"Oh, should we make a party?" I asked.

"A is for Apartment, B is for the Bodies..." Yeah, we worked on that for a bit...

Once we were in our Apartment, I told him to round up his buddies; he grabbed a certain orange T-Rex* from Dinosaur Train.

Then we made cupcakes. Really mediocre gluten-free mini cupcakes with no icing. They must have been good enough for Ryan's purposes; he later helped himself to at least three of them.

And while the cupcakes were baking, we made Decorations. Ryan made a sign that says "WE LOVE DADDY," and a picture of lots of flowers. I think he was trying to tell me he wanted to get a vase of real flowers, but I pretended not to understand him and directed him toward making a picture instead.

Then Ryan drifted into another Curious George episode, in which George learns to make a pinata for a party. Clearly, we were not going to be able to have a proper party without making a freaking pinata.

I made some (gluten free!) papier mache batter and showed Ryan how to tear paper into long strips. Those of you who have been reading The Ryan Files for a while will not be at all surprised that Ryan didn't so much want to touch the papier mache. I watched as he wrestled with the simultaneous desires to make a pinata and to keep his hands clean. The desire to stay clean won, but it won quietly, pleasantly, without tears.

So, with Buddies, Cake, and Decorations in our Apartment, Ryan was satisfied. He didn't need to go through the motions of having a party - the good time was in the preparation.

And when Stu came home from work, Ryan shouted "Surprise!"

Boyfriend certainly knows how to party.

* The character's name is Buddy.

Ungraded

2011-05-19T08:57:00.005-04:00

The annual IEP review went pretty much as I expected it would: all the teachers think Ryan is adorable and they love to hug him; he can read 20 sight words and can tell you that 10 is greater than 4; and he's not ready for mainstreaming; see you in summer school. One of the only surprises was that I managed not to cry.

I mentioned my concern about the regression we've seen over the past few weeks - loss of language use in contexts in which he used to use words; acts of civil disobedience that would make Martin Luther King blush - and after much discussion, we decided Ryan is probably acting out because he misses his sessions with Chrissy, his beloved at-home teacher (SEIT). Chrissy used to come over and play several times a week, then once a week, but then her work schedule picked up and their playdates became limited to once a month or so.

I had been avoiding finding another SEIT because Ryan has such a wonderful relationship with Chrissy, but now it seems unavoidable, because he really needs the extra help. Last night I finally broke down and asked Chrissy for recommendations of SEITs with more open schedules. Even asking for this feels like a betrayal of the relationship - 1,000 times worse than cheating on your hairdresser - but I'm sure Ryan will be able to bond with another special teacher.

The only other surprise from the IEP meeting concerned Ryan's placement for next year. I asked if he would be placed in first grade or if he would be repeating kindergarten, and in an exciting twist, he will be doing neither. Students in first grade are expected to take standardized tests. As Ryan will be incapable of taking these tests, and will instead require "alternate assessment," he will be considered "non-graded." So he'll just go to School. For convenience I'll probably tell people he's in kindergarten, but that won't really be true.

And that's fine. That's appropriate for him.

That's so far from mainstreaming, I'm kind of shocked I haven't cried about it yet.

Has it been a year already?

2011-05-14T20:07:00.003-04:00

Ryan's annual IEP* review is coming up this week. I'm mentally preparing to sit with all of Ryan's teachers and therapists and the relevant folks from the Board of Education to talk about Ryan's progress and what he needs in the near future.

We've played this game before, of course. We're going to smile about how cute he is, then talk about how hard he's working in school, and finally agree that he's not ready for mainstreaming. Someone will trot out a "regression statement" which I will use to lobby for summer school. Ryan will be promised the services he needs, and I will go to my car and cry because he still needs so much.

I appreciate how far Ryan has come - I really do - and I know we're fortunate that he's wading as close to autism's shallow end as he is, but damn it, this crap gets really frustrating sometimes.

Why are we still working on his ability to answer yes/no questions accurately?

Will he ever tell me "I'm thirsty" instead of saying "Milk starts with a letter M?"

How much longer will it be before Ryan thinks to communicate to us that he needs to go to the bathroom, and realizes he doesn't need to wait for me to ask him if he has to go?

Is he going to keep hurling himself to the floor and throwing himself into walls to hurt himself when he's frustrated forever?

How many more years until he can tell me what he dreams about? What he wants to be when he grows up? Who he likes to play with?

When will he have a friend his own age?

And as I'm getting my head ready for this annual review, I'm trying to focus on Ryan's progress relative to himself, but that's really hard to do when my friends are gloating about the accomplishments of their typically-developing children. Don't get me wrong, I'm thrilled that your five-year-old daughter has mastered fractions. I'm truly happy for you that your four-year-old can ask such insightful questions about the world. I love the imaginative stories your two-year-old makes up. But I'm learning that I've got an ugly jealous streak, and I want all that for my kid.

And I want my kid to be able to play with your kids without all sorts of special accommodations and explanations.

But I don't think that's going to happen next school year.

* Individual Educational Protocol - the all-important document that outlines what services a child will get in special ed and what the goals of those services shall be.

Win a Brady Rymer CD!

2011-05-09T11:00:00.000-04:00

* See the end of this post to learn how to WIN A FREE CD *

The first time I heard Brady Rymer's children's song, "Love Me For Who I Am," I got totally choked up. Ryan had been having a rough day, and I was at the point where all I could do was strap him into his car seat and drive around until he calmed down. I turned on Kids Place Live on my XM radio, and this song came on. It was so clearly speaking directly to me, from Ryan's point of view.

Please don't try to fix me,
Love me for who I am.
Please don't try to fix me,
Love me for who I am.
Well I may not talk the way you talk
But I got some things to say
So won't you listen up
Come on, let's talk
You're gonna be amazed.

Please don't try to fix me,
Love me for who I am.
Please don't try to fix me,
Love me for who I am.
Cuz I ain't no motor that won't turn over
You tow down to the station.
No, I'm alive inside
I'm filled with pride
Got a wild imagination.

Please don't try to fix me,
Love me for who I am.
Please don't try to fix me,
Love me for who I am.
Cuz I am who I am.

I later learned that this song, and its album, "Love Me For Who I Am - Songs Celebrating Children of all Abilities," was inspired by Rymer's work at Celebrate the Children, a school in New Jersey for kids with alternative learning styles. Many of the students at CTC are on the autism spectrum.

I asked Brady what brought him to Celebrate the Children School.

"About 10 years ago," he writes, "just as I was starting to play music for kids, Monica Osgood, my friend and the founder-director of the CTC school, invited me out to play for the kids at the summer camp. From that first show on, I loved the school, kids, and staff. They have always been so appreciative and full of unbridled energy! I've been playing a gig a year there ever since. Each visit gets better and better and after one particularly great one a few years ago, I mentioned that we should write these kids some songs - anthems! Songs for them and about their experiences. So here we are two years later."

Brady plays music for the students, but he's not a music teacher. He tries to treat the children with special needs as he would treat any other kids of the same age: with respect, and with an energetic performance. Sadly, this must not be the case with all children's musicians these students encounter. Brady says, "One of the boys even said to me after a show, 'Thank you for treating us like real kids!' I asked him if I could use that as a new title for another song, and he was thrilled!"

This album was inspired by kids with special needs, but Brady says he's gotten positive responses from all sorts of children.

"I make sure not to make a distinction when we play the material live. I think the music and lyrics speak to a very wide range of audience and it was designed to do exactly that. It's best for us to just play the songs and let the audience react how they will. With titles like 'Picky eater,' 'Keep Your Wiggle Alive,' 'Love Me for Who I Am,' and 'I Don't Like Change,' it's pretty easy for families to relate to these topics and to relive their own personal experiences."

A portion of the proceeds from "Love Me For Who I Am - Songs Celebrating Children of all Abilities" will benefit Celebrate The Children School, and an additional 5% will go to Autism Speaks. I asked Brady why he supports Autism Speaks (because as you know, I really want to like them), and he made as persuasive an argument as any I've heard:

"I love and appreciate the work that they do; the research & the community building is incredible. And when we were in the very early stages of the project we sat down with them to talk about ways that we could collaborate. They listened to the songs and immediately loved that they were high spirited, humorous, fun and shed a light on the world of a special needs person. They also recognized the celebratory nature of the music. They knew that kids & families would have so much fun with it and get something positive from it. The celebratory aspect of the project is important to stress, and I'm happy that AS wanted to partner with that message. Besides working with Celebrate the Children School, AS is perfect in helping us get this music into the lives of families who really appreciate & enjoy it."

Brady will be performing at a few of the upcoming walks that the various Autism Speaks chapters are organizing, including the one on June 5th in NYC.

One lucky Ryan Files reader will WIN A FREE CD! Here's how: go to the Ryan Files' Facebook page, Like it, and write "Love me for who I am!" on the wall. I'll pick a random entry on Wednesday 5/11 at noon Eastern time.

In the mean time, please check out the album - listen to tracks for free at www.bradyrymer.com.

Reasonable Accomodation

2011-05-06T09:06:00.002-04:00

In the ongoing effort to sell our apartment, we had our 1,000th open house and had to find someplace to go for a Sunday afternoon. So we decided to go to the zoo. Again. That zoo membership is starting to pay off.

The previous time Ryan and I had gone to the zoo, the focus of the trip had been our excessive use of public transportation to get there. Naturally, when I told Ryan we would be going to the zoo, the first words out of his mouth were "take the train to the bus to the zoo!" This was his expectation of how the day would unfold, and Stu and I could tell that our logical argument that it would be cheaper and faster to drive there would not be very persuasive.

Then I remembered there's a bus that goes around inside the zoo (the Zoo Shuttle) and could take us to a train inside the zoo (the Wild Asia Monorail). When I explained the new plan, Ryan was delighted. "Take the car to the bus to the train to the zoo!" Close enough, kid, close enough.

We waited on long lines to ride the Bus and the Train, but Ryan didn't seem to mind, because he was determined to ride a train and a bus. Not that he much cared about being on the train - he spent most of the train ride demanding snacks and ignoring rhinos. He cared about fulfilling The Plan.

It has taken me a couple of years to truly be comfortable with a trip to the zoo that has nothing to do with seeing the animals.

Spud

2011-04-24T20:49:00.001-04:00

My in-laws have a big backyard that runs seamlessly into the next yard and the next. When playing behind their house, Ryan likes to run the length of this mega-yard; the neighbors don't mind. Today, the neighbors were having a family party, and there were about ten kids playing together.

At first Ryan ran past them and lurked behind a tree, but then one of the girls asked Ryan if he'd like to play with him. He beamed.

"Do you know how to play Spud?" Ryan made no attempt at answering.

The kids explained the rules to him, and then, sensing he didn't really get it, they assigned him a partner to shadow until he got the hang of the game. A tween boy in braces held Ryan's hand and told him when to run (and occasionally hid behind Ryan to avoid being hit with the ball). The kids truly embraced Ryan. They were patient and made him feel included.

One girl wandered into the house and returned with a cookie. My mother-in-law quietly asked her to please not share with Ryan, as he is allergic and the cookie could make him sick. The girl shared this directive with her big sister (who was probably around nine). Then, unprompted, both girls disappeared into the house, and when the returned, they announced they had just washed their hands, for Ryan's benefit.

Wow.

Then, before introducing Ryan to their puppy, they asked if Ryan was allergic to dogs.

Wow.

Someone has trained these children very well.

Ryan played with these kids for a solid 15 minutes. I can't say he ever really "got" the game, but he had a wonderful time playing, and the other kids intuitively understood the parameters of his abilities and manipulated the game so he could participate.

Happy Easter.

Declaration of Independence, part 2

2011-04-22T09:00:00.009-04:00

First catch up on Part 1.

One of the benefits of still living in this apartment is we can walk to the train station in about two minutes. This provides major entertainment value for a little boy. We go to the station to watch the trains - we used to do this with far greater frequency than we do now, but it's still a beloved pastime. Ryan loves the loud rumbling of the trains and the big whoosh when they rush past. Evening rush hour is the best time to visit the train station - you get the most trains per minute.

The other night Ryan was quite insistent that watching the trains was not enough, and instead he wanted to get on a train. I told him we were just there to watch, and maybe we could ride the train to the zoo tomorrow. Having no sense of time, he decided it was time to ride to the zoo right that minute, and he was having none of my the-zoo-is-closed-now crap.

"George couldn't wait to get on the train!" he quoted in anguish. (Ryan was unimpressed when I pointed out that when Curious George got on the subway without the Man in the Yellow Hat, he got lost and chaos ensued.)

Predictably, there was a tantrum. I was unimpressed. I called Stu to see if he was home from work yet (he was) and reported that as soon as the tantrum was over, we'd be heading home as well.

As soon as I hung up the phone, Ryan decided he needed to assert his independence from me. At the train station. During evening rush hour.

"Ryan got to ride the train, you go that way, Mommy."

I said no. In no uncertain terms, no.

This led to an epic meltdown which, for the first time I can remember, I was completely unable to control.

There were the predictable theatrics - throwing himself on the ground, screaming, crying, rivers of snot - but magnified beyond anything I was prepared to handle on a train platform. If this meltdown had happened at home, I could have pinned him down or covered him with a blanket and left him alone until he calmed down. But inches from train tracks, these are not options.

I knew I had to restrain him, because his impulse during meltdowns is to flail until he achieves self-injury. When I tried to pick him up, he flailed his skull into my nose hard enough that I felt compelled to check for blood.

We wrestled for several minutes. My first goal was to get him to the end of the platform, down the stairs to the parking lot. I would then have to get him across the parking lot, across the street, and across the other parking lot before we would get to a sidewalk where I could feel comfortable letting him thrash around without imminent danger of death.

I came to the humbling realization that I could not handle the situation on my own. I had to admit that I needed help.

I called Stu and told him to get his ass down to the train station, stat.

While Stu made his way to meet us, I somehow managed to get Ryan to that relatively-safe sidewalk; I don't really remember how that happened. When Stu arrived, armed with tissues and an amazing sense of calm, I walked away and cried.

I know things will get easier, because things are easier now than they were a year ago. But keeping both of us alive that evening was not easy.

And Ryan was really happy the next morning when he actually got to ride the train (and the bus!) to the zoo.

Declaration of Independence, part 1

2011-04-21T20:16:00.000-04:00

I've heard that typical two-year-olds like to assert their independence by trying to do things for themselves. We still haven't seen the I'll-DO-IT-myself stage - if it were up to Ryan, he would never use his hands again - but we have just entered an I'll-GO-THERE-myself phase.

It took me a while to figure this out, but when Ryan points in two directions at once, it means "You go that way, I'll go this way." He has started giving me verbal instructions to that effect as well. "Mommy, you in the elevator, I go down the stairs. BYE!"

I try to encourage the impulse when it's practical (safe), because I want him to feel grown-up and proud of himself. I'm mostly pretty ok with this around our building. Our neighbors all know Ryan well enough to know which adults he needs to end up with eventually, and Ryan sings to himself loudly enough that I can hear where in the stairwell he is.

I also let him do this on the sidewalks between apartment buildings in our neighborhood. I'll pretend to go "that way," but I'll actually hide pretty near him where I can see Ryan but he can't see me.

I'm trying not to be too nervous about it.

As long as we're in a safe, reasonably-controlled environment.

Yeah, you already know where Part 2 is going...

Roller Derby and Special Needs Parenting

2011-04-11T12:24:00.000-04:00

Of Suburbia's 40 or so active league members, 10 have kids; of those, 3 of us have kids with special needs. One skater has two sons with Asperger's. The other has a son with ADHD and a daughter with an as-yet-undiagnosed mental disorder, as well as a typically-developing child. I don't know if this is a high proportion or if it falls within the range of statistical probability that 30% of parents in our league would have special needs kids, but it got me wondering about other moms out there in similar positions.

I posted a message to a derby chat board, and instantly got a flood of responses from derby girls around the world who are raising children with special needs, or are special ed teachers, or are themselves on the spectrum. So many different stories, such a wide range of disabilities they're all living with - autism, dwarfism, Down Syndrome, deafness. I also got plenty of messages from parents of typical kids, saying that roller derby is the antidote for their parenting stress as well. About half the women I emailed with said they had started playing before their children were diagnosed with disabilities, and half started in reaction to an official diagnosis.

I thought I'd be able to weave their stories together coherently to prove... something... but really, the only common thread is they all love playing roller derby, and find support from their derby sisters and catharsis from the act of beating up their friends.

Instead I'll just share the story of a couple of remarkable women.

My teammate, Satan's Cheerleader, has been skating for a couple of years. Her decision to try out for the team involved this thought process: "OMG! A way out of the house! Three times a week! Other MOMS too, that want to talk about something besides bowel movements, the latest gluten-free products & trips to the pediatrician! I will sell my soul to get in!"

I completely identify with her feelings about being part of Suburbia:

I was excited that there were other moms at derby, including some that didn't suffer from perpetual MommyTalk. They could complete entire sentences that didn't include kids! I won't lie, I was actually a little excited when I found out that others had kids with special needs too. They don't glare at me when my 12 year-old rolls around the filthy PAL floor having a temper tantrum that I can't tend to at the moment because my 10 year-old klepto just disappeared into the parking lot & is trying to break into the armory next door.

And, she adds, her participation in derby has created a community for her children. They hang out with the other derby brats and take on their own derby identities - Satan's kids (collectively known as the Spawn of Satan) are Wring Pop, Sticky Fingers, and Pain in the Ace. I truly look forward to when Ryan (aka Captain Awesome) is ready to play with the Spawn of Satan, the Whiskey Shots, the Wayward Boys, and the Sane Asylum. So far, it's been hard to get him to stay at a game or practice for more than five minutes without a meltdown, and at the last parade we marched in, he was far more interested in his balloons than in interacting with the other kids. But it's nice to know there's a community waiting to welcome him.

Long Island Rollita (I love the name!) has four children - both biological and adopted - and a grandchild, all with multiple disorders. Her home life is complicated enough that she broke it down for me in a handy chart. For the sake of brevity, I'll just say these kids and grandson range in age from 2 to 25, and their diagnoses include Asperger's, Bi-Polar, ADHD, Fetal Alcohol Effects, Reactive Attachment Disorder, Learning Disabilities, Anxiety, OCD, Depression, and Schizo-Affective Disorder.

Rollita's reason for starting skating was similar to my own. She says, "I joined Derby because I really wanted something that was mine...completely separate from my daily chaos. I have never had an outlet like this before and it has been life changing for me." Oh, I hear that! Because of the positive effect playing derby has had on her life, her husband has been very supportive. "If I start to feel the pressure to let it go because of the kids," she says, "he tells me I can't give it up, I need it too much."

I'll let Rollita take it from here:

Sometimes my family feels neglected because I am off doing something for Derby...especially my older kids. Everyone is used to mom always being around and now I suddenly have places to be that don't always include them. It's been a struggle, but they are adjusting.

I try to include them as much as possible. When they do come, I often feel like I am on eggshells and have to watch every little detail and try to prevent/avoid the usual triggers, especially with my 9 yr old son [severe anxiety, OCD, ADD, learning disability, and being monitored by a child psychiatrist for mild Asperger's Syndrome]. For example, at our Christmas Bout, he had a full blown anxiety attack when he saw Santa....for whatever reason, that triggered his panic button...fortunately, my mom was there and just had my son hide behind her while Santa walked by.... without her there, I would've been torn between derby and being a mom...so I always try to plan for back-up support at times that I know my team really needs me because I clearly wouldn't think twice about putting my kids first...I'm sure the other skaters don't have to worry as much about these types of details.

My life is, obviously, much simpler than Rollita's, but I completely identify with her need to have something in her life that is all her own, independent of parenting and disability. I admire her, and all the other amazing women who emailed me, for carving out a little corner of her world where she can recharge and refocus herself so that in her "real" life she can be the best advocate she can be for her family.

We are not alone. Raising a child with special needs can feel very isolating - feeling like your daily experience is completely alien to your friends' lives, not identifying with any of those parenting magazine articles and milestone charts, avoiding play dates because they're just more trouble than you can handle. But there are thousands of us. And apparently quite a few of us have found release in roller derby.

I hope to see you ladies on the track someday!

And thanks to all who responded. Please check out their teams and support your local league!
Bay Area Derby Girls
Bellingham Roller Betties
Charlottesville Derby Dames
Central New York Roller Derby
Dead Girl Derby Kansas City
Dutchland Derby Rollers
Gold Coast Roller Grrls
Iron Mountain Roller Girls
Oly Rollers
Suburbia Roller Derby
Whidbey Island Roller Girls
Winnipeg Roller Derby League

World Autism Awareness Day...Again

2011-04-04T12:59:00.000-04:00

I'm kind of ambivalent about Awareness gestures. On one hand, I want everyone in the world to understand how autism manifests and, how it affects families, and to behave empathetically toward children and adults on the spectrum. On the other hand, I don't understand how screwing in blue light bulbs is supposed to make any of that happen.

This past Saturday was World Autism Awareness Day, and the month of April is Autism Awareness Month. This means there will be more media attention devoted to autism-related issues over the next few weeks, and that presents an opportunity to do more than just slap some pictures of puzzle pieces on walls and repeat those oft-cited 1-in-110 stats. Maybe we have a slightly-greater chance of getting the stories we tell (and experience) every day into the hands of people whose minds are open enough to absorb them.

Looking at a building lit blue does not teach anyone anything except that "there is a thing called autism," and it only teaches that if someone has the personal curiosity to question why the building was illuminated blue in the first place. I'd rather see members of the ASD community devote their energies to true advocacy, talking openly about the beauty and challenges that come along with life on the spectrum.

In the spirit of Awareness, I'm going to repeat some things I wrote last April that I'd like the world to be aware of:

I want people to be aware that people with autism are people, deserving of respect and tolerance. That many of them are very smart. That just because a person may not speak does not mean he does not hear, and feel, and understand.

I want people to be aware that autism is as much a part of who a person is as his ethnicity or skin color or sexuality. And like all of those attributes, autism is a difference, but not better or worse than any other way of being.

I want people to be aware of the sensory integration problems that often plague individuals on the spectrum. I want them to imagine how they would react if every sound were amplified ten times, or if they could not sense where their own body was in space, or if even their softest clothes constantly grated on their skin.

I want people to be aware that their snap judgments of what they perceive as a mother's poor parenting skills may not accurately reflect the situation they are observing. I want people to understand that when a child with autism has a meltdown in public, it's not because she's a spoiled brat, but because her brain is not wired to handle life in a neurotypical world.

I want people to respect that children with autism may be developmentally delayed by a couple of years in some ways but operate at an age-appropriate - or advanced - level in other ways. That in spite of whatever limitations they have, many individuals with autism are quite gifted in other areas.

I want people to be aware that the autism spectrum is a diverse and confusing range of symptoms, behaviors, challenges, and strengths.

I want people to be aware that individuals on the spectrum are loved by their families and are capable of loving others and of living lives that are meaningful and satisfying. That life with autism can be as much a cause for celebration as any other life.

The Great Question

2011-03-30T10:11:00.000-04:00

My good friend Danny roped me into helping him with a couple of autism-themed diversity-awareness puppet shows for third graders earlier this week. Danny worked the puppet (Mike, who has a lengthy back story), and I explained to Mike why he should be more understanding of his classmate who doesn't talk much and is prone to meltdowns.

This is Mike's twin brother, Mark. Mike is not in a wheelchair.

The kids had some fabulous questions after the presentations. My favorite was so simple, it threw me off for a moment:

"How do you know if someone has autism?"

The short answer: you don't always know.

This is part of what makes navigating the world so complicated: if a kid sees someone acting strangely, her impulse might be to laugh at them or exclude them from her game. If it's obvious that there's something atypical about them - like if they had the facial features characteristic of Down Syndrome - that might trigger her to be more compassionate. But if the strangely-acting person looks "normal," compassion might be harder to come by.

That oddly-behaving person is still human, and has all the same feelings as other people, and loves the people in his life and deserves to be treated with compassion. We're trying to teach kids to be respectful of their peers with autism, but the broader message is that we should be respectful of all people.

Icky.

2011-03-25T09:53:00.000-04:00

The other day a disturbed person left a lengthy, disturbing, threatening comment on an old post on my blog. I know it says a lot more about his/her issues than about me, or my family, or autism, and that he probably copied and pasted the same rant on lots of related blogs to try to get his ugly voice out there, but it still upset me, and I can't get it out of my head.

I do not want to print this person's words, but I will summarize: the writer is a Republican white supremacist who believes autism is the result of failed/inattentive parenting, stemming from one's own spoiled childhood. He proudly confesses to the crime of having punched an autistic child in the face and having gotten away with it. After informing me several times how intelligent he is, he swears he will "kill ALL of you" and signs off with a "Fuck you, Amen."

There is no way I could ever hope to get through to someone with so much hatred in his heart. It upsets me to think that there are people like this in the world, so filled with ignorance and bigotry; it terrifies me that my child might someday meet one of them and become the object of their hostility. There are some real sickos in the world, and I have no idea how to protect my child from them.

And more than the death threat, more than his disgusting use of the N-word to describe our President, more than any of the other awful things this man wrote to me, what bothered me most was: what kind of monster runs around punching children in the face? What has to go wrong in one's life that this becomes a justifiable action?

There Is A Cow On Your Head

2011-03-20T22:18:00.001-04:00

Ryan enjoys reenacting his favorite books, tv shows, and computer games, word for word from memory. When he acts out these scripts, he is surprisingly flexible about what props he will use, and he will freely substitute the names of the objects on hand for the names of the corresponding characters in the story.

This often leads to amazingly awesome scenes.

Our favorite children's author at the moment is Mo Willems, and our favorite of his books are the Elephant and Piggie series. We've read maybe 3/4 of the series, and Ryan has memorized every word on every page. They're laid out as simple cartoons with word bubbles, so when we read them together Ryan assigns us roles and we take turns. I'll pull a book from the shelf and say, "Who do you want to be?" and Ryan will say, "I can be Piggie, and you can be Gerald!"(Gerald is the elephant; Piggie is the piggie. They're odd couple best friends.)

So, the other night during his bath, Ryan was reenacting There Is A Bird On Your Head. For those unfamiliar with this modern classic, Gerald is alarmed to discover a bird sitting on his head. The bird is soon joined by a second bird, and soon there's a nest full of chicks on top of this poor elephant. Piggie suggests Gerald ask the birds to go somewhere else. They gladly oblige - and move their nest over to Piggie's head.

Ryan had brought an odd assortment of plastic toys to the bathtub that evening: a polar bear, an alligator, a stingray, a large frog, two Lego cows, a crab, and an ear of corn. For his reenactment of There Is A Bird On Your Head, the role of Gerald the Elephant was played by the frog, and the role of Piggie was played by the crab.

Without further ado, I present the first 23 pages of:

THERE IS A ~~BIRD~~ COW ON YOUR HEAD

~~Gerald~~ Frog: ~~Piggie~~ Crab! Is there something on my head?

~~Piggie~~ Crab: Yes. There is a ~~bird~~ cow on your head.

Frog: There is a cow on my head? AAAAAAAGH!!! (he runs away) Is there a cow on my head now?

Crab: No. Now there are TWO cows on your head!

Frog: (shouting) What are two cows doing on my head?

Crab: (delighted) They are in love!

Frog: (disgusted) The cows on my head are in love?

Crab: (even more delighted) They are love cows!

Frog: (in disbelief) Love cows! How do you know they are love cows?

Crab: They are making a ~~nest~~ alligator! (Ryan tried to balance the alligator on top of the frog; it didn't want to stay there. Unphased, Ryan tried a new substitution.) They are making a ~~nest~~ cup! (Ryan upended the large plastic cup I use to rinse his hair and placed it over the frog.)

At this point, I was laughing too hard to follow the rest of the story, so I can not tell you what ended up hatching from the cows' eggs. You'll just have to use your imagination.

By the way, I can not say enough positive things about the Mo Willems cannon. And his website has a couple of cute games - check them out with your kids (or without them) - you can even dress up a naked mole rat.

And my derby name is...

2011-03-18T09:33:00.000-04:00

I am officially a league member of Suburbia Roller Derby. I think my first game will be next month. I'm proud of the work I've put in so far, and I'm looking forward to becoming a better player. And I'm grateful to Stu for taking care of Ryan while I'm at practice, and for getting past his... um... initially intense reservations... about the whole derby thing.

I tried out for the league as an escape from autism, and as an outlet for my related anger, but it's become much more than that. I love the sport, I love my teammates, but mostly I love the sense of accomplishment I get from learning the game skill by skill.

I have fewer hang-ups about my appearance, because I now think of my body in terms of what it can do: how fast can it skate, how easily can it control my speed, how low can it squat, how hard can it hit.

I have more self-confidence than ever before.

My endurance - both physical and mental - has increased exponentially.

And I'm living much more in the moment, which makes me more relaxed about the future.

So now, in honor of my tendency to make involuntary kung-fu noises whenever I make contact, you may call me:

Ouching Tiger.

We're still here

2011-03-15T21:09:00.000-04:00

I haven't written anything in a week, because it's been quiet here. Eerily peaceful. In a lot of ways, it feels like I'm living with a pretty typical kid.

In the past couple of weeks, something in Ryan's head has clicked, and he's stopped throwing himself on the floor (except when it's time to get on the school bus). He's speaking less Monkey and more English. He's done with overnight pull-ups. He's eating peanut butter and jelly sandwiches for the first time, and strawberries for the first time in years. He's not spitting his dinner all over the floor.

I'm going to savor the peace while it lasts.

Do you know the Leather Man?

2011-03-07T15:05:00.000-05:00

In the late 1800s, a homeless man known as the Leather Man (because he wore a 60-lb leather suit at all times) was famous for walking a 365-mile circuit through some 41 towns in New York's Westchester County and southern Connecticut. He walked the same route every 34 days for years, rarely speaking with anyone.

Photo by F.W. Moore, 1888

Since his death in 1889, his legend has grown - Pearl Jam immortalized him in song - and thousands have flocked to see his pauper's grave and the plaque that bears what is probably not his real name. There's a controversy now about whether his body should be exhumed and his grave moved (it is too close to a highway). Caretakers of the burial site also want to have the Leather Man's remains tested to try to solve some of the mysteries of his life, including whether he was autistic.

I'm not going to weigh in on the ethics of moving or testing the Leather Man's body, but I find it very strange that archaeologists would bother testing these old bones for autism: there is no reliable genetic test for autism. The best genetic test available, chromosomal microarray analysis, only detects autism in about 7% of individuals who have been diagnosed under DSM-IV guidelines. We do not yet have a genetic test to conclusively confirm an autism diagnosis in the remaining 90+% of the ASD population. This means there is also no genetic analysis that could rule out an autism diagnosis.

But for the popular parlor game, "Did This Historic Figure have Autism," the Leather Man sounds like a likely candidate: living alone, not speaking, following a predictable route for years on end. I doubt his bones would speak louder than his actions on this subject.

It's just a phase, he'll grow out of it.

2011-03-04T09:43:00.000-05:00

I finally understand that phrase.

Ryan goes through phases - usually a period of several weeks of intense repetition of some bizarre behavior - and then one day I'll realize, Oh, he hasn't done that in days. And it's over.

Ryan went through a disturbing phase of chewing on his hands. He would chew til the skin was cracked and raw. I'd coat his hands in cortisone while he was sleeping, because if I put it on him while he was awake he would chew it off. I considered investing in chewable bracelets so he could satisfy his need to chew his hands without eating through his skin. And then last night, I noticed Ryan's hands are smooth - they feel like human skin again. And it occurred to me that the hand-chewing had stopped a few weeks ago. Unannounced, unheralded. He just grew out of it.

He has gone through a long, strange series of phases centered on the concept of injury and healing. For as long as I can remember, every time Ryan experienced pain - physical or emotional, real or imagined - he would reach for White Blanket. White Blanket is a standard-issue baby blanket that's fuzzy on one side and silky on the other side; the silky side has the magic healing powers.

White Blanket on the left, trail of Styrofoam destruction on the right...

At some point he started using words to request White Blanket: "Need White Blanket back! Can I have White Blanket back, please Mommy?" The same way, every time. Even if White Blanket was within easy reach. Even if he was already holding White Blanket. Eventually I recognized this was a script and not an actual request.

Then, he decided White Blanket wasn't enough to heal some wounds, so he requested kisses; at first I was happy to oblige. "Kiss it?" he'd ask, usually without indicating the location of the injury.

Then he needed more kisses. "Kiss it?" I'd kiss it. "Kiss it again?" I'd kiss it again. "Kiss it one more time?" I'd laugh and give him a kiss. After several weeks of this script he added the request, "Hundred times?" One hundred is Ryan's standard number for "a large quantity." After I gave him a few kisses, he'd cry, "Need White Blanket back, get White Blanket back, please Mommyyyyy?" Again, he could have been holding White Blanket already, but he would still say this.

During this time, Ryan went through a big self-injury phase. Whenever he was upset, he would slam himself into the floor, or into a wall, and declare himself hurt. At this point I established a policy that I would only kiss real booboos and not injuries caused on purpose.

A few weeks ago, it occurred to me that all of these requests for blankets and kisses had stopped. The self-injury has largely stopped, too. I don't know when that happened, but I'm grateful.

Suddenly, Ryan is much more self-sufficient in his booboo management, but in kind of a disgusting way: he has decided that saliva has magic healing properties, so whenever he bumps his head or bangs his leg into a table, he puts some spit on his fingers and rubs the spit all over the site of injury. It's gross, but it is an effective coping strategy for him at the moment, and I'm not really trying to stop him.

It's just a phase. He'll grow out of it.

The Book - a Fabulous Preview

2011-02-25T08:31:00.000-05:00

I feel like my children's book has been gestating about as long as a fetal elephant. I banged out the story in January 2010, secured a publisher late that summer, and now the illustration process is wrapping up.

Wanna see some pictures?

Yeah, I thought you did.

The artist is my friend Rebecca Rivard, a fabulously creative lady (she has developed arts education programs for schools, children’s museums, and after-school programs in Boston and Chicago) who is somehow fitting in illustrating my book while raising three kids under age 6; I think she was painting while in labor. This will be her first book.

I am five years old. I have autism. I am awesome.

I like to play hide and seek.

I can make an elephant sound.

Sometimes things get too loud.

Seriously, how awesome is Rebecca? I am thrilled to see this book coming together. I hope it will be a useful tool to help families begin the lifelong conversation about autism with their ASD children, and to help kids on the spectrum frame their self-identities in terms of their strengths and special abilities, not just their challenges.

Stay tuned for updates...

In which my imagination gets the best of me.

2011-02-16T16:54:00.000-05:00

Ryan usually bounces happily off the school bus; today he walked slowly, sleepily.

"He cried on the bus this morning," the driver informed me. "He didn't want to get off the bus."

I asked if this was a new thing.

"This was the second time. Happened yesterday, too."

This is the part where the mother of a typical kid would ask her child "What's wrong? Is something bad going on at school?" And the kid would either answer the question or give some sort of ballpark indication of where the problem lay.

But, you know, Ryan can't answer questions like that.

As I ushered Ryan inside and tried to convince him to take a nap, my mind reeled with possible scenarios that would cause my baby to suddenly start resisting getting off the bus and going to school. Yesterday he had some tummy troubles, so maybe he was crying because he felt sick? Does he hate the structure of school? Is a bully - or a teacher - abusing him? Does the screaming stress him out?

If I could pull an answer directly from my (essentially) non-verbal child's head, I would in a second. Because not knowing is driving me crazy, and it's not helping Ryan, either.

Why does it have to be so damn hard?

2011-02-15T10:49:00.000-05:00

I put my kid on the short bus every day.

I know he has challenges that require extra attention in school; I worked with our school district to make sure those supports were put in place for him. I've met his teachers and therapists and read their progress reports. I know there are enough kids with similar challenges that there's a class just for them - and not just one class, but several classes in every school district in the country, manned by teachers and aides and therapists who have dedicated their careers to helping them catch up with their typically-developing peers.

I know all that - my kid is in special ed.

But knowing isn't the same as seeing.

Progress reports and IEPs don't tell you about the screaming. The constant, high-pitched shrieking of a non-verbal six-year-old in diapers as she objects to the demands placed on her in the only way she knows how.

Progress reports don't describe how the other children in the class keep working on their writing and math exercises, diligently ignoring the screaming.

Progress reports don't do justice to how hard my baby works all day to master things that come so easily to typical kids.

Sitting in on a morning's activities - circle time, writing time, gym class, math time, speech therapy - I was in awe of how much energy my kid expends to stay on task. And that he does it. The teachers sometimes have to use their hands as blinders or put Ryan in a weighted vest or prompt him seven times to make it happen, but Ryan can write the sentences he's supposed to write, figure out what number is missing from the pattern, identify the picture of a bar of soap and its purpose and place it in the appropriate room in the picture of a house. But because of his communication and social deficits, it is perfectly appropriate for him to be in the same tiny class as the shrieking child and a loving, sweet five-year-old who only recently learned to utter one-word sentences, like "Eat."

I kissed Ryan goodbye in the lunchroom and went off to cry in my car. Why does it have to be so damn hard for him? For all these kids? Why is he still struggling to answer yes/no questions properly after over a year of attention to this in speech therapy? How long will it take before he consistently calls his kindergarten teacher by her name and not by the name of his last preschool teacher?

And does he know he's in special ed? Does he know the kids at the other tables in the lunchroom are having spontaneous conversations with each other, and that it comes perfectly naturally to them? Does he know how hard he's working, and that despite his amazing successes he's still miles behind the typical kindergarteners?

Does he know how proud I am of him?

Coookie!!!

2011-02-07T09:37:00.003-05:00

My apartment has been staged. This means two realtors and a professional stager came in and instructed me how to make my house look less like my home and more like the Houlihan Lawrence catalog. This involved not just rearranging the furniture and hiding the usual clutter, but removing four of our seven bookcases and their contents, relegating all Ryan's toys to his room, and displaying just-so decorations that make me itch. Seriously, white-on-white curtains and decorative pillows fill me with violent rage.

Among the crap laid out for our professional photo shoot was a bowl of fake fruit. I have no intrinsic hatred for this; it's a glass bowl with some fake pears and apples and a pomegranate. And my real tomatoes. And an empty bag of coffee. And a can of honey from New Zealand. It would not look out of place in Pottery Barn.

Except for the Cookie Monster doll.

The picture of the cat, however, I hate in a profound, visceral way.

Do you see it? At the bottom of the bowl of fruit in my official real estate listing photo, there's a little Cookie Monster? I was not home when these pictures were taken, so I was quite shocked when the proofs came in.

"Why the hell is Cookie Monster in the fruit bowl?" I asked the selling agent as diplomatically as I could.

"Oh, tee hee! I love teal," she explained. "Let's see if anyone notices."

For one, Ryan noticed. And he has appropriated Cookie for his own. I have not stopped him from playing with it, because I feel that a plush doll is more appropriate in his hands than in a decorative fruit bowl.

I must add, this is not just an ordinary Cookie Monster doll. This Cookie Monster has yellow butterfly wings, and green strings that were probably designed to tie him to some sort of mobile, but now look like strangely floppy antennae.

Ryan has named this item Cookie Monster Wings Butterfly Toy.*

As you might expect, Cookie Monster Wings Butterfly Toy flies around the house eating things. Last night, Cookie Monster Wings Butterfly Toy ate Ryan's dinner, a houseplant, my new kneepads, and my face. When Cookie Monster Wings Butterfly Toy ate the picture Ryan had drawn on his easel in blue dry-erase marker, I was at first smugly satisfied that the doll was no longer teal, but then Ryan cried, "Oh no! Cookie Monster Wings Butterfly Toy is a MESS!!!" He then, uncharacteristically, took the matter into his own hands by drowning Cookie Monster Wings Butterfly Toy in the kitchen sink and then carefully drying Cookie Monster Wings Butterfly Toy with the dish towel.

And this is why we can't have nice things.

* Ed note: It has come to my attention that this is actually supposed to be a Twiddlebug. Specifically, it was a give-away in boxes of Kellogg's cereal in 1994. But it doesn't look like any Twiddlebug I've ever seen, so I support Ryan's analysis. Thanks to The Deviant Unicorn for the correction.

They don't grow up so fast

2011-02-06T16:03:00.000-05:00

The other day Ryan and I took a walk around the neighborhood, inventing new ways to play with the month's bounty of snow. Armed with my long-handled ice scraper, Ryan busied himself with breaking through the thick layer of ice on top of the snow. He was clearly the happiest child in town. A grandmotherly lady passing us smiled at Ryan, and sighed, "They grow up way too fast."

Maybe typical kids grow up too fast, but autism has allowed me to watch my baby grow up in slow motion. Each developmental stage seems to stretch for weeks or months longer than expected, letting Ryan's childhood linger.

In moments of frustration, I often wish the process would hurry itself up. How many more years will I have to remind Ryan to pull up his underwear first and then his pants? How much longer will he insist on spitting his food on the floor? Will he ever learn to answer yes/no questions, or to ask why? When will he make an effort to assert his independence so he can feel like a big kid? Will he ever make friends or ask for playdates?

On better days, I am grateful for the slo-mo childhood. I'm totally fine with the fact that Ryan doesn't know about talking back. I'm glad he's not yet like that four-year-old we saw today who insisted she was old enough to walk through a busy parking lot without holding hands or having her mother hold on to her jacket sleeve. I have no problem knowing Ryan has never wasted a gallon of milk in an attempt to make himself a snack. He has never tattled on another kid, requested some impossible-to-find gift, or told someone that he hated them.

Watching this slow growth makes me appreciate each tiny step as it comes. I notice the subtle changes in Ryan's artwork. Just before we had Ryan evaluated and diagnosed, his typical preschool classmates (age 2 1/2) could all draw faces with the features in the right places, while Ryan had no idea where to put the mouth. By age 4, he could position all the face elements perfectly, and even draw a reasonably-recognizable person. And now at 5, he can do some representational drawing (if pressed to do so):

Here we see a tree growing in the grass. In the tree there is a yellow bird and a nest with three blue eggs.

Even though Ryan's development has been relatively glacial, on good days I'd still say he's still growing up way too fast.

Shorties: Wokka Wokka Wokka!

2011-01-31T08:30:00.000-05:00

Hiya hiya hiya folks! I've got some jokes for you and they are funnyyyyyyy...

Ryan and I are at my parents' house.

M: What's Daddy's name?

Ryan: Stuart!

M: What's Mommy's name?

R: Meredith!

M: What's Grandpa's name? Grandpa ___?

R: Lee!

M: And what's Grandma's name? Grandma ___?

R: TREE! (he grins and his eyes twinkle in that mischievous I-know-I'm-up-to-no-good way that I love)

M: What?!?

R: Grandma Yellow Flowers! (he looks out the window) Grandma Sky! Grandma Clouds! Grandma Squirrel!

-----

Ryan is drawing. I've been asking him to think of something that's usually red and to draw it; draw something orange; draw something yellow... We get up to green, and he decides to draw a tree: a green cloud-type circle.

M: Where's the trunk?

Ryan adds a sideways line that curves up at the end.

M: Huh?

To clarify, Ryan trumpets like an elephant.

-----

Ryan is eating a bowl of dry cereal. Every once in a while, I try introducing the concept that one can pour milk on cereal and eat it with a spoon; this usually results in spitting. I gave him a bit of my cereal and milk on a spoon, and he didn't gag, so I thought he was ready to try some milk in his bowl.

M: Do you want to try your cereal with milk?

Ryan (enthusiastically): YES!

He then grabs a handful of dry cereal and plunges his whole fist into his glass of milk.

ps: He tasted the wet cereal in his hand, promptly spit it out, and complained that his hand was wet.

Being Autistic in China, with a nod to Amy Chua

2011-01-20T09:38:00.000-05:00

Everyone's been talking about Amy Chua and Chinese vs American parenting. When I read her description of Chinese-style mothering - drilling academics through repetition, limiting opportunities for social development - one of my first thoughts was that China would be the perfect place to grow up with autism. What autistic kid wouldn't thrive in a society that values routine and order over playground skills?

So I did a little reading, and my hypothesis fell flat.

In China, autism, or "the loneliness disease," has been recognized as a disability since 2006. In a nation of over a billion people, there are only 100 doctors specializing in autism. Children with autism and other "abnormalities" are not allowed to attend public schools. There are a handful of special education facilities in major cities, but none in rural China, so most kids on the spectrum must be home schooled by parents who have little understanding of autism, and little access to the wealth of information available to the rest of the world on the internet. Parent training programs are expensive and have a year-long waiting list to enroll; special schools can have a two-year waiting list.

There is great shame attached to having an "abnormal" child in China. Such a child is considered unable to contribute to society, unable to care for his parents in their old age. And because they are considered burdens from early childhood, most individuals with autism never get the opportunity to develop to their full potential and become productive, valued citizens.

I am so grateful for the opportunities that my child will have because he had the providence to be born in the United States in an era of relatively-high understanding of autism spectrum disorders and the social value of people with autism. And I pray for the future of kids like mine around the world.

He's a good little monkey, and always very curious

2011-01-18T20:42:00.000-05:00

I frequently tell Ryan I don't speak Monkey, but, actually, I do.

Ryan's talent for echolalia extends beyond his species. He frequently quotes Curious George cartoons - the monkey parts, not just lines spoken by the human characters. If George makes requests or asks questions with an ooh-ooh-aah, Ryan will use these monkey words as his own script for making demands of me.

"Ooh aah?"

"Sorry, Baby, I don't speak monkey," I'll tell him. "Can you ask with people-words?"

Don't tell Ryan, but most of the time, I know exactly what my little monkey wants. His nonverbal communication skills are excellent. Between the pointing, the inflection, and my own encyclopedic knowledge of the cannon of PBS Kids, I can easily interpret Georgian requests for snacks, computer games, the location of toys...

Now, how can I use this skill to take over the world?

I am in no mood to take care of you

2011-01-15T13:12:00.000-05:00

Roller derby is still on winter hiatus; I go back to practice in February. Derby had become my primary stress-control outlet, which has made for a long, cranky winter. Going to the gym provides a little exercise, and eating Cheez-its and playing sudoku is nice, but it's no substitute for the catharsis I get from skating and smacking my friends around.

Ryan is getting over some nasty virus, which turned him into a pathetic little lump for five days. Stu has caught the bug and is in full Man Cold mode. I am trying to ignore my symptoms so I can take care of Ryan. Now that the boy is healthier, he has the energy to throw some wicked tantrums - and it's taking all my energy to manage them. I've instructed Ryan to take care of himself so Mommy can get better, but he's refusing to follow my orders.

The only things getting me through this week are Diet Coke and looking forward to a skating party I'm going to next week. Maybe I'll get to hit someone!

You'd Have to be Crazy to Shoot People

2011-01-10T15:43:00.000-05:00

Like everyone else, I was saddened and disturbed when I learned about the recent assassination attempt and related deaths and injuries in Tucson. It goes without saying that one would have to be crazy to shoot 20 people - including a young girl - because of some strange ideology about the New World Order and illiteracy and immigration.

What little information has been reported on gunman Jared Loughner paints a picture of a young man with schizophrenia. I don't know if Loughner had received any clinical diagnosis, but various reports describe his inappropriate and threatening behavior in school; his distrust of government and belief in conspiracy theories; and sudden changes in his personality over the last year. I'm no psychiatrist, but I think all of these things would be consistent with schizophrenia.

I don't know if Loughner had been diagnosed with or treated for any mental illnesses, but his former classmates and professors have told reporters that they had concerns about him - serious enough concerns that his college suspended him and send a letter to his parents stating that Loughner could return to classes only if he'd first "obtain a mental health clearance indicating, in the opinion of a mental health professional, his presence at the College does not present a danger to himself or others" (reported here and elsewhere).

What social supports are in place for mentally ill adults? What supports should be available? Schizophrenia often does not manifest until adulthood, so individuals with schizophrenia may not have the obvious path to services that, say, a child with autism going through the public school system would have. How can we help families recognize the signs of psychosis in their grown children so they can steer them toward appropriate treatment?

Obviously I don't have enough information or expertise to make recommendations for the Loughner family, but this tragic incident should remind us all to look out for our loved ones. If you notice odd changes in someone's personality or suspect psychosis, get involved, even if the family member in question accuses you of being part of the conspiracy.

Here is a list of symptoms of psychosis:

Abnormal displays of emotion
Confusion
Depression and sometimes suicidal thoughts
Disorganized thought and speech
Extreme excitement (mania)
False beliefs (delusions)
Loss of touch with reality
Mistaken perceptions (illusions)
Seeing, hearing, feeling, or perceiving things that are not there (hallucinations)
Unfounded fear/suspicion

You can learn more about schizophrenia here.

Little Slice of Heaven

2011-01-07T22:09:00.000-05:00

Monday was perfect: an absolutely tantrum-free day.

Ryan's first ever tantrum-free day.

I knew it was going to be an unusual day because when he climbed into our bed at his usual 6:15am, he crawled under the covers and went to sleep (and let me sleep) for half an hour. Every other morning, he jumps on top of me, orders me to turn on the light and open the curtains, and plays with Stu's alarm clock.

Many of Ryan's tantrums follow a pattern: predictable trigger, escalating anxiety, slamming himself into a wall, whining like a monkey, insisting he has hurt himself and needs 100 kisses to fix it.

On Monday, we didn't do any of this.

Monday morning, he played happily with his toys. When I told him it was time to get dressed, he got dressed. When I asked him to try going to the bathroom, he walked there - he didn't collapse in a heap and do the backstroke down the hall until prompted to do otherwise.

When I announced it was time to head down to the school bus, Ryan put on his coat and walked out the door. I didn't have to drag him down the hall or order him off the floor in front of the elevator. And when he got on the bus, he didn't launch himself headfirst up the steps.

After school, he did not whine and beg to play on the computer. Instead, he helped me with errands around town. We giggled and sang and chased each other down the sidewalk.

And at bedtime, brushing his teeth did not require my tricking him into going to the sink or scraping him off the bathmat. We just...brushed his teeth.

He stayed calm and self-induced-injury-free all day. He was huggy and sweet and cooperative.

It was perfect.

We may never have another day as perfect as that one, but now I know Ryan is capable of holding himself together for an entire day, and this gives me tremendous hope.

All Aboard the Acela Express

2011-01-02T22:28:00.000-05:00

A friend from my old playgroup came to visit the other day with her five-year-old son. Ryan and Lucas were never best buddies - Ryan once took Lucas out with a football tackle in defense of a disputed toy. As a neurotypical child with an older brother, Lucas is more assertive than Ryan and significantly more adept at defending his own interests. But on this day, they pretty much kinda sorta played together.

Lucas built an elaborate train track and told us all about the Acela Express (according to Lucas, the Acela Express goes from Virginia to New York at a rate of 160km/hr on the straight tracks and 90km/hr around curves, and holds 60 passengers - 20 per car). Ryan pushed a couple of engines around, then, as is his preferred method of playing with trains, started to connect all of the engines and cars together as one way-too-long train.

"No, it's too long!" Lucas warned. "It will derail when it goes around the corner!"

Ryan kept connecting all the cars. Lucas kept separating them.

There was a scuffle. Ryan stepped on Lucas' back. Parents intervened.

My friend suggested the boys take turns controlling the trains. She tried to interest Lucas in some alphabet magnets; Lucas made several well-thought-out arguments as to why Ryan should be the one playing with the magnets.

When Ryan finally settled in with the magnets, Lucas hovered over his shoulder, suddenly regretting his choice of toy. Lucas spelled a word with magnets, and Ryan read it. Ryan spelled a word, and Lucas read it.

Then Ryan saw his opportunity to be the train master; this caused Lucas to instantly lose all interest in magnet letters.

The differences in these boys' play skills were vast and fascinating to observe. There were the linguistic differences, of course: Lucas can form complete sentences, express complex ideas, ask and answer questions; and Ryan can not. There were obvious motor planning differences, too: Lucas designed and constructed an intricate airplane out of Legos; Ryan's Lego creations never get more complicated than single-brick-wide towers, and he doesn't always push the blocks all the way together. And the degrees of imaginative play involved can not even be compared.

But this is the most interactive playdate we've had in a long time. It lasted two hours, and resulted in no bloodshed and relatively few tears. I thought it was a tremendous success.

The End of the World

2010-12-27T17:47:00.000-05:00

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.

Cleaning Up for Christmas

2010-12-26T13:45:00.000-05:00

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!

With Blue Sprinkles On Top

2010-12-23T21:10:00.000-05:00

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.

Passing for Typical

2010-12-20T10:26:00.000-05:00

"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.

Christmas With A Monkey

2010-12-05T23:04:00.001-05:00

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.

Back to our regularly scheduled program?

2010-12-02T14:53:00.001-05:00

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.

Hello, Strangers

2010-11-29T09:39:00.000-05:00

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.

Greatest. Conversation. Ever.

2010-11-18T07:41:00.000-05:00

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.

Hit or Miss

2010-11-08T11:46:00.000-05:00

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.

We've Come From the Future

2010-11-05T11:40:00.001-04:00

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.

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

2010-10-25T09:19:00.000-04:00

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:

Let us Ride... to Camelot

2010-10-24T20:55:00.001-04:00

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.

Seeking advice: Halloween Parade

2010-10-21T10:12:00.001-04:00

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?

The Zoo: Nothing To See Here

2010-10-12T12:16:00.001-04:00

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

2010-10-12T08:54:00.000-04:00

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...