Wednesday, March 30, 2011

The Great Question

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.

Friday, March 25, 2011


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?

Sunday, March 20, 2011

There Is A Cow On Your Head

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:


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.

Friday, March 18, 2011

And my derby name is...

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.

Tuesday, March 15, 2011

We're still here

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.

Monday, March 7, 2011

Do you know the Leather Man?

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.

Friday, March 4, 2011

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

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.