Wednesday, December 3, 2014

The Hangover

Ryan knows he is allergic to wheat. Before eating a new food, he will almost always ask "Is there wheat in it?" two or three times first.

Almost always.

So when we were at his grandparents' house two Saturdays ago, I didn't think to warn him about the platter of cheese and crackers that had been left out on the coffee table.

You see where this is going, right?

He only ate one cracker - my mother-in-law caught him as he was about to eat a second one. When I told him he had eaten wheat, he made a valiant attempt to spit, though of course you can't spit out what you've already swallowed.

I was pissed - we had just gone through two weeks of regression after some accidental wheat exposure from his Halloween candy - but I decided to use this incident as an opportunity to make Ryan aware of the effects wheat has on his body. It had taken us several days to realize that the behavior he had shown earlier in November was wheat-related, but this time, we had warning.

The next morning, Ryan woke up whining, irritable, crying that he "can not find" something or other. There were vocal tics we haven't heard in six months or more - an assortment of clicks and whoops that drive me mad and had at one point led me to start researching Tourette Syndrome.

Instead of reprimanding the behavior and reminding him to use calming strategies, as I would normally do, I held him close and said "You're feeling weird because of that wheat cracker you ate. That's why you're freaking out." Throughout the day, whenever he whooped or threw himself on the floor or forgot the order of operations for putting on shoes and socks, I made a conscious effort to be patient and to remind him (and myself) that there was a logical, organic reason for his problems, that that eventually they would pass. He was distressed and confused and felt out of control. At one point he cried to Stu, "I can't think!" We felt terrible for him, but I must confess I was elated that he was able to express himself so well.

Coincidentally, Monday night Ryan spiked a fever that would keep him home from school Tuesday and Wednesday. I knew the fever was the result of a virus, but Ryan associated it with his wheat allergy. As he lay on the couch, miserable with a 102.5 fever, he wailed like a frat boy with his first hangover. "I will never eat wheat again!" he declared to the heavens. He didn't believe me when I told him the fever was unrelated to the cracker, but I didn't push that point too far. My goal had been for him to associate wheat with misery; the universe was working in my favor.

It has now been just over a week since the cracker incident, and he's almost back to normal. Well, normal for him. Every day he's a little more present, a little more agreeable. It's so easy for me to lose my patience during these regressive periods, but it's helpful to remind myself that it's not Ryan's choice to act as he does. He doesn't want to feel out of control, he doesn't want to feel like he can't think. It's easier for me to be patient when I'm aware he's having an allergic reaction. I wouldn't get angry at him if he were in anaphylactic shock - I would do whatever I could to help him breathe - so instead of getting mad when he exhibits signs of brain fog, I need to find ways to be supportive.

Thursday, October 23, 2014

The I-Hate-This-Book Club presents "Chicka Chicka 1-2-3"


Yeah, Chicka Chicka 1-2-3 is something of a modern classic, but I'm not afraid to speak out against nonsensical children's literature. Down with the Patriarchy! (or, you know, just a really annoying book that my nine-year-old has suddenly rediscovered with so much passion I've got poor Zero crying in my head.)

Chicka Chicka 1-2-3 is an example of trying to cash in on an earlier success. With Chicka Chicka Boom Boom, Bill Martin, Jr., John Archambault, and Lois Ehlert rocked the NY Times' bestsellers list, so naturally Simon & Schuster were eager to get more cut-out characters climbing another tree. After hundreds of readings, I take issue with Boom Boom's inconsistencies (the letters fall out of the coconut tree, are dusted off by their relatives, and then return to the same place in the pile-up they had been immediately after the fall; how the tree returns to its original upright position defies my understanding of physics), but the "story" is easy enough to follow: letters climb tree, letters fall down, letters climb again.
The more letters re-climb the tree, the less bent the trunk becomes. Amazing.
In Chicka Chicka 1-2-3, the basic conceit is to swap numbers for letters and apples for coconuts. Numbers 1-20 climb an apple tree, then we skip to 30, 40, 50, 60, 70, 80, 90, and 99. I don't know why 99 was invited and 72 was not, but my son will quickly point out to you that 99 only appears at the bottom of the tree - maybe he wasn't coordinated enough to climb all the way up.

Dramatic intrigue comes from Zero, a whiny little bitch sitting on the ground sobbing with existential ennui: "Will there be a place for me?" Zero, honey, lemme tell you something: no one in this life is going to make a place for you: you've got to climb up that apple tree and take it. Don't worry about those other numbers: you do you.

So, all the other numbers are sittin' in a tree, eating red, green, and orange apples, when along come two bees. Numbers, it seems, are terrified of bees. All the numbers except for 10 climb down, at which point Zero gets over itself and realizes the only thing that will scare away bees is... a three-digit number. So Zero climbs up, sits next to 10 to make 100, and the bees flee, much to everyone else's relief.
To me, it looks like a creepy monster in a brown shirt standing in front of a tree.
You can't unsee that.
The numbers cheer Zero as "Hero of the Number Tree," but you know who's the unsung hero of the piece? Ten. Ten didn't freak out and jump out of the tree. Ten didn't cower in fear. Ten stood its ground. If any other number had stayed up there with Ten, they would have made an even bigger three digit number - maybe even a FOUR-digit number - that would have (somehow) eliminated the bumblebee menace. But no - Ten was the only one with the guts to stay in the tree.

Not to diminish Zero's contribution - Zero's like a firefighter, rushing into danger after everyone else has evacuated. But Ten already had a fire extinguisher - it just needed someone to help aim the spray. My metaphor just ran over my foot.

Anyway, this book is annoying to read, and made infinitely more annoying by the estimated 11,500 clips on YouTube of people reading the book or reenacting the story or, God help me, singing songs based on the text. Ryan is adept at finding these "educational" videos. Last night while clearing the dinner table I discovered I had the song from one of them stuck in my head - one which features a typed warning that if too many more people click Dislike on the video, he will be forced to make it private; I nearly threw a plate across the room as I announced to Stu, "If you find me hanging in a closet, this is why."

God, I hate this book.

Thursday, September 11, 2014

Shorties: 99 Problems Edition

On line at the supermarket this afternoon, Ryan pointed out a "big red spot" on the side of my face. As I thanked him for pointing out my flaws and rearranged my hair to cover the zit, he pulled a reusable shopping bag over my head.

"It's not that bad!" I laughed, removing the bag.

He silently put the bag back on my head.

_______________

It was open school night.

"The Open House starts at 6," I told him.

The entire time we were in his school, Ryan kept looking for a house, asking where the Open House was, asking when the House would close...

_______________

At bedtime, Ryan was complaining about a hurty spot on his foot, and something-or-other on his arm, and Lord-knows-what on his head.

"Boy, you have 99 problems," I declared.

"I have 99 problems? If I had one more problem, I would have 100 problems! Because 99 plus one equals one hundred! And I do not want to have 100! That is a really big number!"

"Yes," I replied, "You've got 99 problems but addition ain't one."

_______________

Saturday, August 16, 2014

Yopp!


Robin Williams' suicide set off my most recent jag of depression. I was not surprised at all to learn he had been suffering inside: his whole career - his outward show of joy and light and energy - has always been, to me, the quintessential example of the mask depressed people often wear to get through their days. Over the past two decades I have become skilled at stuffing my feelings away so I can function in the world; so skilled that my sporadic therapy sessions are almost entirely about learning how to feel - an exercise that always leaves me exhausted.

I'm highly functional outside my house, but at home, sometimes I just start crying. Yesterday, while Ryan was playing in his room, I just sat at my kitchen counter and sobbed. Almost as soon as I had begun, Ryan came rushing down to the kitchen, asking me, "What's wrong, Mommy?"

"Oh, sometimes I just feel sad," I told him, not even bothering to wipe away my tears. "I'm not sad about anything, I'm just sad."

He hopped up onto the stool next to me and reached for his pile of library books. Horton Hears a Who was on top. "Let's read this one, Mommy. It will cheer you up."

The last thing I wanted to do at that moment was read Dr. Seuss aloud, but my sweet boy wanted me to, so I started, crying through the first four pages.

As the kangaroos were mocking Horton's devotion to his dust speck, Ryan opened the fridge, got the lemonade down from the top shelf, pulled a glass from the cabinet (I don't know when he got tall enough to do these things), and started fumbling with the bottle's cap. Ryan doesn't like lemonade, so I had no idea why he was so intent on pouring it. "Just pour yourself a little to see if you like it before you waste a whole glass," I said in the mom voice. With the glass just an inch from the edge of the counter, he poured out a finger or so of lemonade, nearly knocking over both the glass and the bottle; I winced. He tasted the lemonade, made the lemon face, and filled the rest of the glass with water.

Then he put the glass down in front of me.

My baby fixed me a glass of lemonade to cheer me up.

I hugged him, getting happy tears all over his hair. I tried to explain the difference between happy tears and sad tears; I think he understood, because he started giggling.

"Keep reading!" he demanded sweetly.

By the time Jo-Jo let out his Yopp, I felt calm again.

I must be doing something right here, because I'm raising one seriously good kid.

Saturday, July 26, 2014

I will read a book all about me.

Last night at bedtime Ryan was nothing like sleepy. Our rule is that after we say goodnight, Ryan can read or play quietly in his room and tuck himself in when he's ready. Usually he chooses to read in bed with a flashlight.

"What book do you want?" I asked him.

He smiled and replied, "I will read a book all about me."

He asked for my book. The book I had written for him when he was five and scared and flying blind and wondering how my baby's future would unfold. It struck me as very important at the time that Ryan should know that he is autistic: that his brain is organized differently than the average brain; that there are lots of people in the world with brains similar to his; and that Different does not mean Less.

I wanted him to grow up hearing - and someday understanding - the word Autism. I wanted to lay the groundwork for a lifetime of pride in himself and his unique strengths and contextualization of his own challenges. I had been appalled by the frequency with which I would find myself in a conversation with another adult while in Ryan's presence and the other person would whisper the word "Autism" the same way they might curse under their breath.

At this point, Ryan's vocabulary does not include the word Autism; it also does not include most contractions or properly-used gender pronouns, so I'm not worried.

Opening my book, Ryan first lingers on the dedication page, which depicts the main character doing a cartwheel and features the words "For Ryan." Then he "reads" aloud, reciting whatever word-sounds he remembers.

Instead of reading "Ben has autism, Ben is awesome," Ryan says "Ben is awesome, Ben is awesome."

Good enough for now. Good enough.

Friday, July 11, 2014

3 minutes of torture

About a year ago I found a therapist I actually like. She's different: she doesn't have a beard, and her office doesn't have a single Persian rug in it. Instead of blandly listening to me babble, she helps me make constructive plans and changes. If she weren't my therapist I think we'd be friends.

The other day she flat out tortured me: she made me sustain eye contact for three whole minutes.

Dear God, I nearly climbed out of my own skin.

I had confessed to her that making eye contact during conversations is something I have to make a conscious effort to do. It makes me uncomfortable, but I know that other people expect me to look them in the eyes when talking and listening. They think if I'm not looking them in the eye it means I'm not paying attention to them, but it's really not true; sometimes eye contact distracts me from what a person is saying, and I have to doodle or focus on something over their shoulder to actually hear their words.

So Dr. Evil sat close to me and told me to maintain eye contact with her while she talked in a non-threatening and supportive way. We locked eyes. After a few seconds, my feet started pedaling. A few more seconds and my right thumbnail was stabbing into my left palm. Stay here, I told myself. My throat closed off. Stay here. Breathe. I vaguely heard the encouraging words she was saying.

"Can I stop?" I begged, swallowing tears.

She moved to a chair across the room.

I felt visceral relief.


But Ryan's eyes, I can look into Ryan's eyes all day and feel nothing but wonder and amazement.

When he lets me.

Which I'd never force him to do.



* I actually have no idea how long it was. It felt like half an hour.

Tuesday, July 1, 2014

#WalkingAcrossCT

Last week I walked 120 miles.

In six days, I walked across Connecticut along Route 1, from New York to Rhode Island. It actually happened. I raised $4,500 and solicited several minutes of tv air time to benefit two charities I adore: The CT RollerGirls, and the New England Ballet Company's adaptive dance program for children with special needs.

I prepared for last week for months: hours of walking to build my physical and mental endurance. I also spent hours plotting my route and drumming up free places to stay each night, and dreaming of six whole days of being responsible for nobody but myself.

I shipped Ryan off to Grandma's house, kissed Stu goodbye, and had a genuine adventure.

And it was bliss.

Our Lady of Perpetual Good Hair. For more pix, see my Instagram.

I'm not going to lie: there were plenty of blisters and lots of chafing, and the back of my right knee started swelling the very first afternoon. There were a handful of moments on Days 2 and 3 when I was tempted to get on a train and go home.

But I felt truly free for the first time in years. Six days without cleaning up after anyone else. Six days without translating autistic communication into my own language. Six days without hearing the goddamn alphabet song at all. Six days of being able to hear myself think.

How does one bathe from a bridge?
I followed my curiosity and my body rhythms, ate when I was hungry, rested when the sun was highest, slept like a rock every night. I shared pictures of the strange things I saw as I walked, and my friends and teammates cheered me on and sometimes even walked along side me to keep me company. I didn't do as much writing as I had thought I would, but I think I gathered lots of ideas to feed my writing over the next few weeks.

Instead of listening to music or my usual NPR shows, I tuned in to my surroundings. I chose to be constantly aware of the world around me. If I had been wearing headphones, I would never have heard two baby deer meowing (did you know that fawns meow?). I heard meowing, looked across the street, and saw the babies. Their mother stepped out from the bushes, stared at me, and started stamping her hooves in what I suppose was an act of intimidation; I did not feel intimidated. Rather, I felt grateful that I had all the time I wanted to take in this scene.

As I crossed the finish line at the Rhode Island border, I felt satisfied, mentally refreshed, and physically not nearly as exhausted as you might have expected. I could have walked another 10 miles that afternoon.

These weirdos drove all the way to RI to cheer for me.

And then I got home.

And I remembered why I had wanted to run away in the first place.

I love Ryan, but I did not miss being a mom last week.

I didn't miss living in the suburbs, four times closer to the nearest cow than the nearest store.

I didn't miss being a grown up.

You know what I missed? My shower. I have a really nice shower.

So now I have to focus on writing this novel about walking away from home so I don't actually do it in real life.


Saturday, June 21, 2014

Summer vacation, day 1: we're done already

On his first full day of summer break, I asked Ryan, "If you could go anywhere today, where would you go?"

He looked up at me hopefully and asked, "Can I go to school?"

The boy loves school. Loves it. He has been in a deep funk since school let out. Tuesday afternoon he stepped off the bus sobbing that he "can not find the sea creatures and the blocks," his favorite in-school reward toys. Summer school starts July 1, but it's at a different school than he attends during the year, so he won't see his precious sea creatures until fall.

I've tried letting Ryan direct what fun summer things we do, but he finds fault in all his own choices. On Wednesday he announced a desire to go to a trampoline park; he made his wishes known by putting on the pair of bright orange grippy socks we had been required to purchase that one previous time we went to a trampoline park. I then made the mistake of bringing him to a trampoline park that recently opened just half an hour from our house, rather than driving an hour to the one he had been to once before. To say he was distraught that it was the "wrong" trampoline park would be an understatement. The closer location had all the same elements, but Ryan was quick to point out the subtle differences which made it unacceptable: fewer ramps, only two basketball hoops instead of three, the blocks in the foam pit were the wrong colors. And they wouldn't even let him wear the grippy socks. I got him to stay for half the time we paid for and considered it a victory.

While negotiating with him about leaving I noticed his sneakers were falling apart, so I dragged him to the mall to find replacements. We had our usual fights about which direction a person should walk on an escalator and our usual brief detours into stores Ryan finds interesting (his level of interest in a store correlates with the number of mirrors it has, not in the merchandise it carries), and then Ryan did something he has never done before: he asked if we could go to a movie.

We rode the escalator up (and down, or whatever) to the theater just in time for a showing of How To Tame Your Dragon 2. I let him get popcorn. The theater was practically empty, and we had a whole row to ourselves. He sat patiently through previews. And then ten minutes into the movie, he started testing me. First he moved one seat to his left. Then another. Then another. Then he stood in the aisle. I told him to sit down, and he said, "But I want to tiptoe away." Then Goldilocks tried out all the seats again, then my lap, then all the seats to our right. Then he shook an empty seat in front of us, looked at me, shook the seat some more... There were threats; at one point I gathered up our stuff as if to leave. He insists he enjoyed the movie, though I'm surprised he saw enough of it to form an opinion.

Homeschooling would never work for us.

Thursday, May 29, 2014

Just enough to make a mother worry

Yesterday was an excellent communication day. Ryan initiated baking muffins with me, and even engaged Stu in a long game (it involved chasing each other around the house and Stu shooting foam balls at Ryan) without the game dissolving into tears.

I can tell what kind of day it will be from the moment Ryan wakes me up. If he runs into my room shrieking "I can not FIND ___," it's going to be a day of wailing and gnashing of teeth. If he leaves me alone past 6:30am and just plays in his room, the rest of the day will likely be interactive, like yesterday.

Knowing this was a good day, Stu pressed Ryan for details on how he had skinned his knee at school. Ryan readily revealed he had fallen down while running at recess. After a few follow-up questions, we learned he had been running away from Joe. He made it clear that he and Joe were not playing tag: Ryan was "running away from Joe" because "he's pretty mean."

We were not able to extract from Ryan what "mean" thing Joe had done or said. My understanding had been that Joe is Ryan's buddy in his inclusion class - that Joe is usually looking out for Ryan and helping him be part of the group. It's possible that Joe thought he was playing and Ryan saw things differently. It's possible Joe has come to see Ryan as a social liability and felt the need to do something "mean" to bolster his own status. I can imagine many scenarios that may have played out at recess.

Unfortunately I can really only imagine. Ryan gave me just enough information to make me worry, not enough information to figure out what really happened.



Monday, May 26, 2014

#NotAllAutistics

The #YesAllWomen hashtag on Twitter is positive, important, and true. Yes, ALL women experience harassment, assumptions of inferiority, belittlement by society.

The #NotAllMen response misses the point. Saying that all women - yes, ALL women - have negative experiences with men does not imply that ALL men are to blame. A man saying "your problem is not MY fault" diminishes the true experience of the women making the complaints; and then he does, indeed, BECOME part of the problem.

In thinking about this weekend's drive-by shooting spree in Santa Barbara, committed by a disturbed young man with tremendous psychological problems and an inflated sense of entitlement, I fear that when people read that he was on the autism spectrum, some might jump to the conclusion that ALL autistics are ticking time bombs, ready to explode in violence.

There's a big difference between a man saying "not ALL of us are like that" and a non-autistic person saying "ALL autistic people are like that;" the former is self-identification, the latter is bigotry.

While the nation has this important conversation about women's right to be human, I pray that this psycho's autism not make life harder for anyone else on the spectrum to be taken seriously or treated with dignity and respect.

Thursday, May 22, 2014

NT Girls are Easy!

On Monday I had the pleasure of babysitting my friend's delightful 4-year-old daughter, and I learned some striking things about neurotypical children:

1) They're interactive. Little D and I had conversations all day. Like, I would ask her what she wanted to play with and she would tell me. Even more excitingly, she would say my name to get my attention (I totally melted at the way she called me "Miss Meredith" in her adorable little 4-year-old voice) and then ask me questions. Getting information out of Ryan, as you know, takes quite a bit more work; and he feels no need to get my attention - he just shouts demands into the air.

2) They want to help. The helping might make more work for you, but they're so interested in what you're doing they want to do it, too. Little D was watering my plants, putting my groceries on the conveyor belt, cutting my fabric, and even stepping on my sewing machine pedal for me, and she was psyched to do it. Ryan might humor me for a moment if I ask him to, say, help me cut fabric, but will soon wander off with my scissors before the job is done and proceed to cut everything except the scraps I've given to him for that express purpose.

3) They follow a kind of logic I understand. Since Ryan and I have radically different brain wirings, my days are full of interpretation and decoding and conscientious planning several steps ahead. Little D and I, on the other hand, think in the same language, so our interaction does not require constant translation from Autistic to NT and back again.

Yes, kids are always on their best behavior when their parents aren't around, but this glimpse into the world of raising a neurotypical child was eye-opening. I wouldn't trade my baby for anything, but having a whole day every once in a while in which I didn't feel like a foreign exchange student in my own home would be pretty sweet.

Sunday, May 18, 2014

My ears are bleeding...

If I had to describe Ryan in one word, it would be "sweet."

If I had to describe him two words, they would be "sweet" and "loud."

I do not understand how a body so small can generate noise of such volume and duration.

Aside from the objects that are constantly crashing in his wake, the noises include an endless variety of screams, shrieks, complaints, grunts, tics, scripts, and requests. Yesterday during a long car ride, we got tired of asking him to be quieter, so I offered him $1 if he could stay quiet for a whole minute; despite multiple attempts I still have my dollar.

The only way to get silence is to ask him a question.

Sunday, April 6, 2014

Tales of the sweetest kid in the world

Ryan was invited to a birthday party for a girl in his inclusion class. This is the very first time one of his typical classmates has invited him to a party; I got a little choked up when I RSVPd. I had never heard Ryan mention this girl, but apparently she talks about Ryan "all the time."

Saturday morning Ryan woke up with a fever and had to miss the party. I made the choice not to be the first to mention it so as not to make him needlessly upset. He spent the morning zonked out on the couch, showing no interest in much of anything.

Shortly after I left for the evening to help out with my roller derby league's game, I got a string of texts from Stu: Ryan had realized what he had missed and was understandably distraught. "Can we go to Teresa's birthday party now?" he begged . "Can it start now?"

I imagined he was upset about having missed out on ice skating and cake and balloons, but Stu says Ryan's only concern was the logistics of how and when he could give the birthday girl her present.

He hasn't asked for cake.

He hasn't asked to go ice skating.

He has asked to give Teresa her birthday present.

This child is beyond sweet.

-----------------------------------
ADDENDUM
7/2/14: Ryan dragged himself into school while still not quite well, just to give Teresa her present, and was promptly sent home by the school nurse. It was that important to him. It has been three full months, and he has not received the courtesy of a thank-you note. He doesn't know this is rude, but I do. Just sayin'...

Wednesday, April 2, 2014

Who is this Ryan person?

One of Ryan's less-attractive qualities is that he is easily frustrated. Before he even has his arms in the sleeves of his jacket he's likely to be wailing "I can not zip my coat up!" He will freak out that "I can not find my ___" when the toy in question is right next to him because it doesn't occur to him to turn his head and, oh, LOOK for the damn thing. As I've said before, throwing up his hands in defeat tends to be the rule.

His teacher and therapists and I have all put this at the top of our list of things we're working on with him.

So I have to admit I spit out my coffee when I read the following letter from his art teacher:
It is with great pleasure that I will be giving your child an award next week. Each month, we focus on a different character trait, encouraging our students to think about, practice, and develop.

The trait for March was "Perseverance."


As the Art Teacher, I watch for this quality all the time. Being an Artist means taking risks, sticking through a problem until it's solved, and sometimes starting over again and again. It's hard work. Your child is willing to work hard and stick with a challenge.

Ryan is someone who I feel exemplifies this trait consistently and is a role model for other students.
And then I called my mother, and she fell off her chair laughing about it. And then I told Stu, who stared at me as though I were speaking Japanese.

I have not met this persistent art student, patiently working through problems, but I would love to. I hope he makes an appearance sometime outside of art class.

Monday, March 31, 2014

Poor Steve Jobs

Ryan's teacher has started using a system called n2y, "your home for effective symbol-supported tools and materials for your students with special needs." It involves rebus-like reading materials on various non-fiction topics.
So far, Ryan has brought home n2y-related worksheets that seem to have been produced by corporate sponsors. The first was about Lego and made reference to the Lego movie being in theaters. Today he brought home a lesson tied to the 30th anniversary of the Macintosh computer. I'm not going to scan the whole thing, but imagine rebuses like the picture above that go along with the text:
Apple (R) made the Macintosh (R) 30 years ago. Today computers are everywhere! Old computers were big and hard to use. The Macintosh was small and easy! Users could just click on the mouse. Today computers are in homes and schools. Computers help people work and communicate. How do you use a computer?
The pictures are supposed to help kids with special needs learn to read; I have no idea how effective this actually is.

Then there are related activities: cut out pictures and match them to other pictures (my kid is 8, I think this is a bit below his level);  a page of vocabulary words; graphing; circle the pictures that relate to the topic; write a story on the topic using thematic symbols (Ryan's entire story was "The Macintosh is a user-friendly computer.").

I don't know if any of this is helpful or educational, but I do know it resulted in the single greatest worksheet Ryan has ever brought home:


It said "Use a pencil to draw glasses on the second Steve Jobs," and Ryan interpreted this to mean drinking glasses. He stacked two drinking glasses on Steve Jobs' head. The bottom glass is half-full. On top of that glass is an upside-down glass, which, naturally, poured water all over poor Steve Jobs, leaving water droplets all over his face. It seems someone then asked Ryan to add some eyeglasses, though I'm sure Steve Jobs would much rather have had a towel.

Sunday, March 30, 2014

The trees are different!

"The trees are different! The cars are different! The signs are different!"

Ryan rattled off a monologue in this vein from the back seat of our rental car that lasted the entire ride from the West Palm Beach airport to his grandparents' house.

Maybe he paused for a block or two. Certainly no longer.

As soon as we arrived at his grandparents' house he started grilling us for details on when we would be going home. Ceaselessly.

We've entered a phase of repeated questioning: Ryan will ask the exact same question, phrased in the exact same way, a dozen or more times in a row, even if he already knows the answer. We answer him the first time. And the second. And then our answers start getting stupid.

"Have we landed?" he asked while cruising at 38,000 feet.

"No."

"Have we landed?"

"Not yet. We'll be in the air for another hour."

"Have we landed?"

"What do you think?"

"Have we landed?"

"..."

"Have we landed?"

"Look out the window."

"Have we landed?"

"Yes."

"Have we landed?"

"Ryan, if you ask me again I'm going to scream."

"Have we landed?"

[screams]

"Have we landed?"
 I'm really not sure what he's going for here, which makes it difficult for me to provide the correct answer. Other questions he asked similarly during this trip included:
"Is it sunny?"
"Are we above the clouds?"
"Are we flying?"
"Can I see the whole view from here?"
"Are we in Florida?"
"Is that a palm tree?"
"Is this milk old?"
As we have established, Ryan's behavior on vacations is entirely different from his regular behavior. At home lately he insists on drinking with a straw to avoid contact with surface bubbles; in Florida he never even asked for a straw. While I'm hoping this repeated questioning will fall into this only-on-vacation category, I do not take it for granted that he's able to ask questions. I'm thrilled to answer questions for him.

Once.



Monday, March 17, 2014

Another reason to hate the anti-vaccine movement

Scientific fact: there is no evidence that vaccinations have anything to do with autism.

I know, you've heard your favorite vapid B-list celebrity tell you otherwise, but dozens of studies on the subject have turned up NO connection. The one study that ever showed a connection was later retracted and shown to be fraudulent.

Plenty of folks in the blogosphere are, thankfully, talking about the importance of vaccinating your children for the safety of the herd, so I don't feel the need to echo their good advice.

I have a secondary concern, though: the depth of fear that parents-to-be have of autism.

The anti-vaccine crowd is so afraid of autism that they're willing to risk their children's health and the health of people around them to avoid having a child perhaps be autistic. They make the emotional (ie not science-based) calculation they do because they have been led to believe Autism is Bad; that having an ASD is worse than catching measles, mumps, rubella, or polio; that they would be remiss if they didn't do everything possible to prevent their child from developing autism.

Is autism that scary?

Autism is often portrayed in the media as an affliction, a disease, an epidemic, a societal burden. In 2010 the fear-mongers at Autism Speaks put up a terrifying video in which a scary narrator had amazing lines like, "I work faster than pediatric AIDS, cancer, and diabetes combined," and , "if you are happily married, I will make sure your marriage fails," or  "I don't sleep, so I make sure you don't either," or even "I am still winning, and you are still scared, and you should be." Thanks to protest from the autism community, this crap is no longer available on YouTube. You can read more of my thoughts on Autism Speaks here (hint: I'm not so fond of them).

I'll admit, I've had some scary, frustrating moments in raising a kid with PDD-NOS, and my kid swims at the shallow end of the spectrum.

But raising any child can be scary and frustrating.

Raising my autistic son has also brought me lots of moments of tremendous joy, just as every other parent experiences.

I have no evidence, but I'm going to go out on a limb and guess that almost nobody has ever experienced joy treating their beloved child for an infectious, life-threatening disease.

My son is healthy, happy, and atypical. Being atypical is neither good nor bad - it's just a different way of being. Illness, on the other hand, is bad - potentially painful, potentially crippling, potentially fatal.

I would be devastated if he contracted measles or polio or another preventable disease because I had withheld standard vaccinations. I find the risks posed by viruses far scarier than autism.
 




Thursday, March 6, 2014

Walking for Autism and Roller Derby

I seem to only get things done when I know someone is counting on me. The only person I feel ok letting down is myself. That's why I started this blog: I love to write, but I lacked the discipline to sit down and do it until I knew there were people looking over my virtual shoulder.

For months now I've been thinking about a novel I want to write. In this story, a more selfish and less responsible version of me abandons her family to walk US Route 1 from Maine to Florida. I think she leaves a note before driving off to Maine, but that's about the extent of her planning. I thought about the story, about how the chapters would alternate between the woman walking and her family figuring out what to do without her, about literary devices to indicate her internal monologue. One morning I walked from Milford to New Haven for research. I even wrote a few pages. And then I got busy with...I don't even know what...and put it aside.

Last night I made a public declaration that this novel is going to get written. I announced my intention to walk across Connecticut from border to border as research and inspiration for this book. I made this announcement in the form of a GoFundMe campaign: as I walk I will be raising money for two charities close to my heart, and I will be blogging my adventure to force myself to write.

The charities that will benefit are the New England Ballet's adaptive dance program for kids with special needs, and CT RollerGirls.


For the past four years, New England Ballet has included young dancers with special needs in an adaptive production of The Nutcracker Suite, alongside members of the professional dance company. They have given Ryan and dozens of other kids with autism, Down syndrome, and various physical challenges the opportunity to express themselves through movement; to learn the discipline that goes along with rehearsing a show; and to gain the self-confidence that comes from performing what you've practiced and getting well-deserved applause.


Raising a kid with special needs isn't easy, and I've owed my sanity over the past few years to roller derby. There's nothing more therapeutic than making good friends and knocking them off their skates. The ladies at CT RollerGirls create an environment that's both inclusive and competitive, allowing all its members to tap into their inner beasts and be their own heroes.


Please join me on my journey!





Wednesday, February 19, 2014

With All Due Respect

There's a very popular blogger who I love - Jess, a fellow autism mom who encourages respectful dialogue among her readers and is a strong proponent for autistic self-advocacy and presuming competence; this is all awesome. She even has the ear of important folks in government and in the disability-rights community; all even more awesome.

She make s a big point of asking her kids' permission before posting about them, and whenever her blog includes a photo of one of the children, she's careful to label it as "used with child's permission, as always." I understand her thinking on this subject - she wants her daughters to have a say in what information about them is posted in a public place, and specifically she wants her 10-year-old autistic daughter to get in the habit of advocating for herself - but something about this feels a little self-serving to me.

I can and must speak for my own child: he is a minor. In the United States we do not allow children to sign contracts because we do not consider them capable of understanding whatever it is they are agreeing to. We usually try young criminals in juvenile court because we agree that kids are incapable of fully understanding the consequences of their actions before reaching the age of majority. The human brain continues to mature into one's early 20s, but for most purposes we turn over the life-keys at 18.

My 8-year-old still believes the Tooth Fairy is real and finds it absurd that I won't let him live on cheese and pancakes alone. Even if he were neurotypical, I would not presume him capable of understanding the potential consequences of sharing a photo of himself on the internet.

I'm sure Jess has only the best of intentions, but I think she's fooling herself if she thinks her 10-year-old's consent is informed, reasoned, and meaningful.

So what's the alternative? As I've said before, my current tactic leans toward greater self-censorship. Now that Ryan has friends who can read (An aside: he has friends!!! How freaking great is that?), before I post something to this blog, I try to imagine how I would feel if I were a kid and my friends read it. Growing up is tough enough without your stupid mom embarrassing you. Consequently, there are lots of things I end up not sharing here, much to my disappointment (oh, the stories you're missing...). This is also why posts have become fewer and farther between in recent months. I've thought about password-protecting posts or giving the boy a pseudonym, but kids are smart enough to get past stuff like that.

Ryan with the Valentine he made for his best friend. Shared because he seemed pretty proud of it, and because I don't think he'll be embarrassed about it, as always.

Friday, February 14, 2014

Speaking Truth to Power


The other day the mayor of our little town visited Ryan's class to talk about his job. Previously, the class has welcomed a firefighter, a police officer, and other community helpers who I imagine make for more exciting show-and-tell than a politician - the flashiest thing Mayor Blake had to offer the kids was brand-new pencils with his name and title on them in shiny gold paint.

The mayor explained that in his job he has a lot of meetings with people and writes a lot of letters. Hearing this, Ryan became indignant. Defiantly, he barked at the mayor, "But your PENCIL is not SHARP!"

Like, duh, how can you write letters if your pencil isn't even sharpened?

The mayor stammered and admitted Ryan had a point. The teachers laughed and told the mayor, "He's got you there."

That's my boy: telling it like it is.

Thursday, January 23, 2014

Rain Men or Retards

This exchange popped up in my Facebook newsfeed yesterday. Let's ignore the possible over-sharing on the part of Red (though as over-sharing goes, this was relatively tasteful) and look at Blue's response.

Depending on Blue's analysis of the technology in question, Blue's use of "autism" could either mean "genius" or "brain dead." Not knowing what sort of phone Red has, and judging from Blue's lack of grammatical skills, I assume Blue is not using the word "autism" to mean "super smart," but I admit I do not have enough information to decide if I find this comment funny or offensive. In response to my seeking clarification, Blue said he was "trying to be funny," though that doesn't explain what he thought the punchline was. Maybe Blue's phone constantly makes funny noises or insists on calling the same number over and over...

These are two of the wildly different ways people on the spectrum seem to be portrayed in the media: "Rain Men" or "Retards," brilliant or defective.

Neither caricature is accurate, of course, because all people - autistic or otherwise - are individuals, but some assumptions can cause more harm than others. Why does it matter? Because people's attitudes and actions are usually linked, and if you think folks on the spectrum are less than human, you'll probably treat them that way.

Case in point: this week an Illinois Republican running for state congress said in a public interview that autism and dementia are Divine Punishments because “God is angry. We are provoking Him with abortions and same-sex marriage and civil unions.” Now, if she believes Autism is Bad - like, plague of locusts and striking of the firstborn kind of bad - what kinds of laws might she support for her autistic (not to mention gay/demented/pro-choice) constituents if she were elected (God forbid)? Would you expect her to help maintain special eduction funding or to cut it and divert that money to something God would like better?

I would like to think that Blue has a way-better phone than Red, but most folks don't throw around the word "autism" as high praise.

Monday, January 13, 2014

Catching up

So, um, Happy New Year. I know I've been scarce around here, what with all the personal demons to wrestle with, so I feel a catch-up post is in order.

The Nutcracker was a tremendous success for all involved. Miss Debbie really pulled the troops together. Ryan was in three dances, and was very proud of his three different costumes. First he was a solder battling the Rat King.


Ryan is the tiny one at center.
Then he got to do his beloved Russian Dance.
Photo by his teacher, who had much better seats than we did.
 And finally he was a melting snowflake.
Again, tiny one at center.

He was rightfully proud of himself.

After Nutcracker, there was another week of school, and then the dreaded Winter Break began. I am not a fan of school breaks, because the sudden change in schedule makes it really hard for Ryan to regulate his behaviors and emotions, and when Ryan feels distress, we all feel distress. This break was especially hard for me because I was still distraught over that whole never-being-able-to-play-roller-derby-again thing. Put me in a stressful situation and take away my primary coping mechanism, my mind goes to some pretty dark corners.

Then, after a full year of anticipation, Christmas finally came.
 
Then more vacation. We took a couple of train rides into the city, first to see The Gazillion Bubbles Show, and then to see the Radio City Christmas Spectacular. Ryan loved them both, and most especially enjoyed riding the train. And there was sledding and playdates and meltdowns and a birthday party, interspersed with daily pleas from Ryan to back to school. (Yes, my kid WANTS to go to school.)

Then when school finally resumed, there were 1 1/2 snow days and some tearing of hair. Then I started taking classes at a boxing/kickboxing gym to see if that will fill part of the derby-shaped hole in my life. My therapist has advised against relying on aggressive sports as a substitute for feeling my feelings, but I'm not yet convinced that it would be better to sit and mindfully observe my own sadness than to throw a solid punch.

We now return you to my regularly-scheduled life.

"I like to dream about the alphabet."

Once when Ryan was around three or four he woke up in the middle of the night screaming, and when I asked what was wrong, he said "Dinosaur" with a tone of both terror and bewilderment. That's the closest he's ever come to revealing the contents of a dream.

I've always wondered, of course, what he dreams about. I've asked him, but he doesn't yet have the capacity for that kind of storytelling.

Last week, Dream was one of his spelling words. At school he used it in a sentence:

Of course.

He likes to dream about the alphabet.