Tuesday, June 30, 2009

The Boys in the Yard

The kids in my apartment complex spend every afternoon playing on the patio and lawn between the two buildings. Norman Rockwellian wholesomeness. They're mostly good kids, ages 4 through 11, and a couple of them live in garden apartments, so the toys are always readily available. They ride bikes and scooters, blow bubbles, play kickball (the bikes and scooters serve as bases). Since I'm usually the only adult out there, and always the only one willing to participate, they often try to rope me into their games; sometimes I have to remind them that I'm an adult, and they can not use me as a shield in a water gun fight.

Ryan enjoys playing in the backyard as well. I draw hopscotch numbers on the patio squares and he runs/jumps from one to the other. We play a lot of tag. We've also been working on his socialization, especially sharing the bubble wand. I can coax him into playing with most of the kids. He's better with the older ones - they are more patient and less threatening, and they seem to understand that Ryan is more in the "little kid" category than the other 3-4 year olds. He's understandably indifferent to the aggressively-friendly girl closest to his age.

And then there's Jonathan. Ryan hates Jonathan.

Jonathan is around 7 years old, and has only recently started playing in the backyard, usually without his mother and almost always "supervising" his 4-year-old little sister. Jonathan really, really wants Ryan to play with him, and will not take no for an answer. Neither will he be deterred by Ryan shoving him, yelling at him to go away, shrieking, throwing himself crying on the patio, or running away screaming. I think Jonathan makes a point of getting into Ryan's space just to watch him freak out.

I've tried to explain to Jonathan that Ryan needs time to warm up to a group before jumping in; I've gotten nowhere. I've told him and the other kids that some children have a harder time playing with other kids. But Jonathan will still piss him off, and then will whine, "Does he need to warm up again?" And forget about convincing that kid not to shoot Ryan with a water gun...

How can I explain PDD to the kids in the back yard? How can I prepare Ryan to be able to express his needs when I'm not around? I can't control what the Jonathans of the world do, so I will have to focus on what Ryan can do. In this case, Ryan did express himself: he told Jonathan quite clearly that he didn't want to play with him. But Ryan still didn't get what he wanted, which was to be left alone. He has to learn how to behave when his needs are not met. I don't want to have to teach him to handle being bullied, because that means admitting that my baby is in for more than the average amount of kid-on-kid abuse we all suffer throughout childhood.

For now, I'm with him to stand up for him.

Monday, June 29, 2009

The God Connection

Ryan fell asleep on the way to the park this afternoon, so I threw him in the stroller, sat on the grass, and started reading Autism and the God Connection by William Stillman. Its premise is that one of the strengths of autism is an enhanced spiritual sense, and that embracing the gifts of autism can bring one closer to the divine. Stillman, who has Asperger's, writes that autistic individuals often experience a disconnect with the physical world, creating an "aptitude for accessing a non-ending stream of consciousness," and that "because of this shift in orientation, those with autism may hold capacity for spiritual connectedness, heightened awareness, and exquisite sensitivity beyond what is considered typical. These abilities are gifts and blessings." He stresses the importance of accepting autism as a developmental difference and not a disability, and treating your autistic child with respect instead of talking about him as though he's not in the room. I'm only on page 34, but I'm fascinated so far.

Then I woke Ryan up (if he naps too long, bedtime is impossible) and took him to the playground. In addition to a fantastic playground, Harbor Island Park has small beach with a nice sprinkler park. I was surprised when Ryan indicated he wanted to go to the sprinklers - he rarely enjoys getting wet in a sprinkler, and is still pretty hesitant around sand. The wind blew spray from the sprinklers onto our faces. I thought it felt great; Ryan scrunched his face up and tried to spit the water away.

Fresh from reading that book, I was keenly aware of how differently I was approaching this trip to the beach versus last summer. Last summer, I remember ripping off Ryan's socks and shoes and forcing him to experience the beach and sprinklers in the same way as the rest of the kids. I got upset when he refused to step into the ocean, and had zero patience for his dislike of feeling sand on his skin. Going to the beach was no fun for either of us, but I kept subjecting us both to the this-is-how-summer-is-supposed-to-be routine.

Today, a year wiser, I looked for ways to make being on the beach enjoyable for both of us (while still intentionally getting him a little outside his comfort zone). "Ooh, look at these rocks!" I cooed. "Wanna throw them in the water?" When Ryan sees a stream or a puddle, he needs to throw rocks and sticks into it. So he was happy to throw things into the sea; not so happy that the rocks were a little wet and sandy, but he toughed it out.

I took off my shoes, but didn't suggest he take off his. "Mommy, your feet! They're dirty!" he marveled. I told him I liked walking barefoot in the sand, and not to worry, I would wash my feet later. He even helped me unbury my toes. A few months ago, he would have cried that I needed to put my shoes back on; today, he seemed tolerant of my behavior, even though he clearly did not approve.

Eventually, he made his way into the sprinkler park. Mostly he stood in a relatively dry corner and pointed out when each sprinkler head went on or off, but occasionally he stuck a finger in the water, or manned the water cannon.


He seemed quite pleased, and spent a good long time doing whatever it was he was doing. Last summer, I kept pushing him to get more involved, as if there were some correlation between happiness and saturation. Now I can respect that he's having fun in his own way, even if it's not my idea of a good time.

Friday, June 26, 2009

Shorties: Day 3

Potty training. For real. Really doing it, not turning back. I think he's ready. After only three days, he's starting to recognize when his pants are wet, but that didn't stop him from crapping all over my living room carpet this morning. We're at the take-him-to-the-potty-every-20-minutes stage. The kitchen timer might instill a Pavlovian response.

A strange window onto his mind: whenever he sits on the potty, he starts anxiously requesting cheddar cheese. "Rectangle cheese!" he begs. Cheese, while a favorite food of his, has never been a potty training reward, and I can think of no valid connection between peeing and eating cheese. Chrissy has advised me to ignore this and not think too much about it.

Wednesday, June 24, 2009

Diagnosis

Recently, a couple of people have asked me about how we came to have Ryan diagnosed. Might as well share with the group.

Ryan started using words around the same time as his friends, but they never gelled into sentences. At first, I thought the other kids in the playgroup were all really advanced, but the June before he turned three, when I asked his preschool teacher for her opinion, Miss Terry said, "I was thinking about mentioning that to you." She said that she and the director of the school, Miss Jeanette, had noticed that Ryan had been making normal steady improvement throughout the year, and then that summer he had just stopped making any progress at all. Miss Jeanette did an informal "language sampling," and based on her results, she recommended we get him tested by the Board of Education.

The process of diagnosing a child and matching him up with appropriate services is long and tedious. Summer is a bad time to get the ball rolling on anything that requires the Board of Ed; the summer that the Special Education department's office is moving is even worse. I started filling out paperwork in August, got an appointment to have Ryan evaluated by the Committee on Preschool Special Education in September, and got the PDD diagnosis from a developmental pediatrician in October. At that point, he started receiving some services in the context of his regular preschool. In November, he started at a special ed school. His occupational therapy screening finally happened in December, with OT services beginning soon after.

Throughout these early months, I was working through the emotional hurricane that comes with learning that there's something wrong with your child; educating myself about PDD and treatment options; and learning how to navigate the special ed system. I read a lot, cried a lot, cried while reading.

At first I thought he would be fine if he just received some speech therapy at his normal school. Then I saw what was possible with one-on-one instruction. Chrissy, Ryan's special ed itinerant teacher (SEIT) shadowed him in class one day, encouraging him to participate, and the other children gasped, "He can talk!" Soon after that, Stu and I went to Parents Night at Ryan's school. The kids' artwork was all over the walls. On one wall were 18 little construction paper people, with faces and hair drawn on. Rather, there were 17 with faces, and then Ryan's picture, with some random dots and scribbles all over. Next to those were 18 Halloween projects: 17 finger-painted pumpkins, and one made of tissue paper glued in a pumpkin shape, because Ryan refused to touch finger paint. After seeing this, I collapsed into a preschooler-sized chair and sobbed throughout Miss Jeanette's speech.That's when I accepted that he needed to go to a special school. I toured prospective preschools without really knowing what questions I should have been asking.

If you suspect there's something wrong with your child's development, start the evaluation process as soon as possible. They say early intervention is the key - the more help the kid gets while his brain is still forming, the better.

In addition, I offer this advice to any parent starting this process:

- Write everything down, and keep it in one place. I keep a spiral notebook that documents all our appointments, doctors' contact info, notes from meetings, what dates I left phone messages... It has been enormously helpful.

- Find support for yourself. I have a thing against therapists, but between support groups and online chat forums I'm starting to cobble together a sense of community that keeps me from feeling like I'm in this alone.

- When you meet with the board of ed, ask if they suspect your child is on the spectrum. As a matter of policy, they will not say the word "autism" unless you say it first.

Tuesday, June 23, 2009

Seeking Validation

I was flipping through Parenting magazine at the gym, and instead of feeling educated or entertained, I just started getting pissed off. This magazine may be nice for the average mom, but it's mostly meaningless to my own parenting experience, and emphasizes how different my life is.

Some highlights from the July 2009 issue:

* A round-up of some of the more healthful kid snacks endorsed by cartoon characters.
Ryan doesn't care if Elmo is on a can of soup - it would probably disturb him, and certainly wouldn't make it any more likely that he would eat the soup.

* Kids' cute answers to the question "What do kids do better than adults?"
Oh, for the day Ryan is capable of answering a question. Two-year-old Claire and her answer, "Get a treat for pooping in the potty," just rubs salt in that wound.

* A round-up of frozen snacks kids love.
1) Ryan hates cold things in his mouth. 2) At least two of the five snacks on the page contain wheat, to which Ryan is allergic.

* Five meals ready in minutes
There's not a single one of them that Ryan would eat willingly, even if it were adapted to be wheat-free. Pasta? Steak? Eggs? Please.

* Deciding how far apart to space the births of your children.
This has nothing to do with autism, but it's still irrelevant to me, as I have never felt any desire to have more than one child. I felt ok just turning the page on this one.

* Homeless in the Suburbs
Now, this was a very important and interesting article, about the invisible world of homeless families. According to this article, some 40% of the homeless population is comprised of families, and "1.6 million, or 1 in 50, children in the United States experienced homelessness at least one day between 2005 and 2006." Chilling. Then I realized autism affects 1 in 150 children, which means there are three times more homeless kids walking around than there are autistic kids. And then I felt alone again.

* Genius Advice for Moms with Babies and Toddlers
There are many problems "solved" here that I am still looking forward to experiencing. One mom offers her solution for keeping her kids from taking off their jammies in the middle of the night; I look forward to the day I do not have to coach Ryan through each step of removing his clothes. A woman advises how to get your kid to stop talking non-stop. I'd like the run-on sentences to start now, please.


Women's magazines are often irrelevant to my experience as a woman - I don't wear makeup, I don't buy a new wardrobe every season, I don't think Robert Pattinson is cute - but I don't get upset about that; I just turn the page and move on. I'm comfortable enough with myself that I don't need to validate my life choices in that way.

But I do feel some sort of need for validation of my parenting experience. I need confirmation that there are other families like mine out there, dealing with the same challenges, familiar with the same alphabet soup language of IEP, CPSE, GFCF, SEIT that I've learned to speak. I want to be able to write a letter to an expert and have her give me advice on how to encourage my almost-four-year-old to use the verb "want." I want to read other spectrum moms' tales of triumph.

And I don't want to see any of those demoralizing milestone charts.

In other areas of my life, I've had time to develop my own sense of self, so I don't seek outside cues that I'm ok. I felt that way about parenting, too, until Ryan's diagnosis. I'm sure that eventually I will feel that comfortable with my PDD parenting as well, but now, I need outside validation to feel like I'm part of a community. Everyone wants to feel liked, loved, accepted, and included.

A quick Google search turned up a few eMagazines, some academic journal-ish publications, autism advocacy organizations' quarterly newsletters, and one promising-looking actual magazine whose online shop is currently down for maintenance (and which I might subscribe to even though it costs $6 per issue).

Perhaps the first step is to let my Parenting subscription lapse.


---
Update: I eventually subscribed to Autism Asperger Digest Magazine, and I love it!  Check it out!.

Sunday, June 21, 2009

Shorties: A Window on his Mind

Ryan and I walked out of a store today, and next to the door was a woman with a medium-sized poodle on a leash. "Look! A puppy!" Ryan announced.

As he approached the poodle to say hello, it started barking at him, violently. Ryan jumped back, pointed a trembling finger at it, and cried, "Oh no! It turned into a dog!"

Theater of the Absurd

I have been involved in the creation of theater since I was five years old. I grew up acting in at least two plays a year, every year, in a children's musical theater group, in community theater, at school, at the local teen center. In high school I started directing plays and musicals. In college I was a theater minor, concentrating on directing, and working part-time doing tech. After graduation, I stage managed and ran light boards and whatnot for a while, then earned my MFA in Performing Arts Management. Then I worked for various companies, and wound up as Managing Director of an Off Broadway theater. After my son was born, I picked up the occasional theatrical grant writing gig because I couldn't think of another theater-related job I could do from home.

And then I realized: I've been directing a very short actor through 3 1/2 years of rehearsals and workshop performances at the playground.

I think my theatrical training has put me in the perfect position to be Ryan's mom. I have been trained to listen, to observe, to react spontaneously, to communicate, to improvise. I am used to dealing with diva moments. I am aware of motivations and intentions. I can figure out how to talk to an individual actor in a way that's helpful to him. And I can pretend to be really angry when all I want to do is laugh.

And Ryan is quite a good actor. He loves pretending to sneeze. He likes showing me his happy and sad and angry faces.

And he's always off book (for you non-theater folks, that means he learns his lines quickly).

Most of his language comes in the form of scripting. He will memorize the dialogue from a book or tv show and bust it out while playing or in an attempt at communication. The earliest example of this I can remember started shortly after he started saying words. If I was holding him and he wanted to be put down, he would command me "Down down plop! Down down plop!" This references the page in Are You My Mother? when the baby bird jumps out of his nest before he knows how to fly.

Every time we play Ring Around the Rosie, Ryan pretends to float up and the end, then reprimands himself with "We all fall down, not back" (sic - the line is "not up"), then responds to himself "OK, Wheeeeee!" and falls back down. This, of course, is a brief scene from Elmo's World.

My day is full of guess-that-reference, because I know Ryan can not use language creatively enough to form scenes like that on his own. Sometimes the scripts make sense (like down down plop), and sometimes they seem to come out of nowhere. I make a point of watching tv with him sometimes so I'll know what he's talking about later.

I have been instructed to use instances of scripting as a bridge to something else. The other day in the bathtub, Ryan was playing with the water coming from the faucet. He seemed to be trying to catch it all, then started baling it to the other side of the tub. I figured out he was reinacting a scene from the Clifford cartoon series in which Charlie and Emily Elizabeth can't figure out how to turn off Charlie's father's soft serve ice cream dispenser, and they try to contain the mess as the whole dock fills with vanilla ice cream. So I played along, throwing in suggestions I knew were not part of his script, like "Maybe the shark is hungry and will eat the ice cream" and "Quick, fill up this bottle! Whew, we saved the day!" Then I transitioned the game to "Let's pour this bottle of water on the duckie. What if I pour it on you?"

Like a director, I help Ryan get beyond his text to some higher truth. Someday soon, I hope he will try his hand at playwriting as well, instead of just reciting someone else's scripts. I love working with original material.

Wednesday, June 17, 2009

That's good, right?

Usually Ryan rides the bus to and from school, but yesterday I had a meeting with his OT, so I picked him up at the end of the morning. Miss Susan was bubbling with excitement.

"Today was terrific - I was going to call you later!"

She proceeds to tell me that Ryan had been playing with a puppet, then put it down and moved on to something else. When another kid picked up the abandoned puppet, Ryan TACKLED the kid. "MINE!" he shouted as he snatched the puppet.

This is good?

Oh yes, says Miss Susan. It means that Ryan has finally started to connect with other children enough to notice what they're doing, to care about what they're doing, and to initiate interaction and the use of language.

"But... sharing. Sharing is important, right?"

"Well, yes, that's the next thing we have to work on."

It's very confusing. This is not the first time that Miss Susan has gotten all excited about behavior for which parents traditionally reprimand their children. Being argumentative and oppositional? That's great! Stealing another boy's sand toys? Terrific! Launching himself head-first down a staircase? That hasn't happened at school yet, but I wouldn't be surprised to learn it's a "sign of progress."

Monday, June 15, 2009

Poached pears, Sir?

Every time we prepare to leave the house, Ryan launches into an existential crisis, which seems rooted in the idea that there is no food outside of our apartment, and if we don't bring all possible food choices with us, he will starve to death while we're at the park. Usually, his list of demands is:

"Milk! Juice! Fruit bar!"

I assure him that there is a fruit bar and some juice in my bag, he whimpers doubtfully, and we're on our way.

Yesterday, his emergency planning was more involved:

"Milk! Juice! Banana! Fruit bar! Grapes!"

I told him there were snacks in my bag.

"Fruit bar and rectangle cheese and GRAPES!!!"

Yes, yes, yes dear.

He cried and chanted variations on this list all the way down in the elevator, all the way to the garage, truly in a panic. I gave him some juice in the car to quiet him down.

Little did he know, all I had in my bag was an apple and some gluten-free pretzels.

Saturday, June 13, 2009

Today was... normal.

So much of our day today would have looked completely normal to the average family - and we couldn't be more pleased about that.

This morning, Stu took the 6am shift with Ryan and let me stay in bed.
Generally I only get to sleep in on Mother's Day or my birthday, because from age 18 months up until the last two weeks, Ryan has been beyond attached to me and has completely rejected anything to do with his father. Last month, he would have screamed for me if Stu tried to participate in the morning routine.

Then Ryan got dressed in his Curious George t-shirt.
Although Curious George is Ryan's favorite character, this was the first time he permitted us to dress him in a shirt with a face on it.

We got in the car and put Ryan in his new booster seat. He had no problem with it.
Usually, even the smallest change becomes a big deal to him.

I gave Ryan a bag of sand toys and told him we were going to play in the sand at the beach. "Sandbox!" he cheered enthusiastically.
Ryan has had some issues with sand.

A light rain started hitting the windshield. I decided we should keep going, and maybe the weather would clear.

"Sandbox!" he interjected.

We stopped at a traffic light.

"Sandbox!"

The entire car ride continued like this.

We parked the car. "Sandbox!" It was still drizzling, but it was the least-rainy day we've had in weeks, so we decided to skip the beach and join the dozens of other wet families on the playground.

He ran for the playground, climbed, went on the slides. I pointed out that there was a small sandbox in the park. He stepped around it to get to a ladder. I asked if he wanted his sand toys; he totally ignored me.

While playing, he slipped and fell in the mud. He didn't freak out - he just requested a towel and went on playing.
Being dirty usually makes him wail.


When it was time for lunch, he didn't complain about having to leave the park. He waited patiently in the car as we drove to a diner.
I can't remember the last time we successfully ate with him in a restaurant.

He stayed at the table throughout the meal. He didn't cry, scream, wander, or try to climb into the next booth. When I excused myself to go to the ladies room, he stayed at the table with Stu and ate his lunch.
See traditional unhappiness with Daddy, above.

In the afternoon, we went out to play with the neighborhood kids in the back yard. Ryan chased them around and got grabby when they tried to take his ball.
This is very, very new. Ryan's teachers tell me that being possessive of toys shows more normal connection with other people, as opposed to indifference. Before, if someone took his toy, he would move on to something else rather than bother interacting with the other kid.

The ordinary can truly be the most extraordinary.

SID

Today might be the first day of the season we try to bring Ryan to the beach. I am fearful, but based on his recent progress, I am hopeful.

Last summer, before I had even heard of Sensory Integration Dysfunction, I didn't understand why Ryan insisted on wearing sneakers and socks at the beach, or why he cried when I tried putting him barefoot in the ocean. I thought he was just being difficult, or that he really liked wearing socks.

Sensory Integration Dysfunction (SID) is a neurological disorder that complicates interpreting data collected by the five senses, the sense of movement, and the sense of where you are in space. SID often goes along with autism spectrum disorders, but it can also be a completely independent diagnosis.

There are certain textures and sensations to which Ryan is hypersensitive - touching sand, especially with his feet, causes him great pain and stress; he used to cry whenever he felt wind on his skin - and others which he barely notices. One thing standing between Ryan and freedom from diapers is that he doesn't notice that he's wet; and yet, if he gets a tiny drop of water on his sleeve, he starts searching for a towel, or a dry shirt. A loud vacuum cleaner might make him hold his ears, yet he craves going to the overwhelmingly loud indoor playground with the ball pit. He begs to be swung around and turned upside down, but will shriek if someone lightly touches the top of his head. At the moment, he is sitting on my lap fretting about invisible crumbs on his fingers.

His teachers and I have been building up his tolerance to touching offensive textures, so now he's able to play in the sandbox or mush Play-Doh without crying. He will wear sandals with minimal argument. Recently I even got him to play in the back yard barefoot.

Now if I could only find a sunblock that doesn't make him cry that he's itchy...

Wednesday, June 10, 2009

Here's to the Ladies

I am blessed to have some terrific mommy friends. When Ryan was 4 months old, I joined our local chapter of Mothers and More, and was assigned to a playgroup. Over the years, small group of women has become my village. We've been together through pregnancies, births, deaths, evil mothers-in-law, unemployment, food allergies, and the everyday joys and challenges of figuring out how to be parents. The Tuesday playgroup has become one of the most stable entries on my calendar.

Between the nine of us, we have 16 kids and 2 on the way. One of the ladies is about to move away, so yesterday, we thought it would be fun to take a picture of all the kids. Well, all the kids who were there - it's pretty hard for all of us to be healthy and available at the same time. So, six moms tried to wrestle ten kids (all under age 4) onto the couch. Chaos ensued. Bags of goldfish crackers were enough to tame some of the crying, but other kids were less willing to sit together than others.

Guess which one's my kid?


Wait, maybe that wasn't clear enough. Now guess:

It may look like he's smiling, but he's screaming for me to let him go.

This was so much easier when they were two. And there were fewer of them. And the autism hadn't yet revealed itself.

(Ryan's the one in the red shirt.)

Monday, June 8, 2009

I Lie to my Kid

Ryan's best friend is Bear, a teddy bear head and arms stuck to a little blue blanket. When it became clear that this was THE bear, we tracked down an almost-exact back-up bear on eBay - we call it Doppleganger. We have tried to swap the bears with some frequency in hopes that they would wear out equally and the boy would be none the wiser.

Ryan hasn't noticed our deception. Yet. But the bears are starting to look pretty different:

Real Bear (right) has a crushed flat right arm, his ear is fraying, his nose has a gap in the middle, and he's generally ratty. Doppleganger (left) has a semi-crushed left arm, a gap on the side of his nose, a greasy stain on his forehead, and a strange little blue spot that we sometimes have to cover with a band-aid, and when we remove the band-aid it miraculously heals...

I fear it's only a matter of time before Ryan's intense attention to detail derails the whole ruse.

What lies do you tell your kids?

Sunday, June 7, 2009

It's all about me

I'm a little obsessed with potty training.

Ryan is the oldest of my friends' kids who is still in diapers (or pull-ups, whatever, they're still diapers). I am perhaps too keenly aware when I see a tiny little two-year-old running around the playground in big-kid underwear. The pediatrician says that being in diapers up to age five is normal, and in autism chat rooms moms are often seeking advice on training their seven- or ten-year-olds. Intellectually I understand that, but I've come to see this particular milestone as a conspicuous sign of his developmental delay - something that everyone can see that highlights that he is different.

There are plenty of areas in which he is behind. He can rattle off the dialogue from every book we own, or from any of a dozen episodes of Sesame Street, but he has trouble formulating an answer if you ask him what his name is. His sentences rarely include verbs; we're working on getting him to use the phrase "I want..." He still struggles to get dressed and undressed, and has to be prompted on the order of operations every we tell him to take off his shirt. At age 3 3/4, he's only just hitting the defiant "terrible twos" stage (Miss Susan assures me this is a sign of progress).

So with all these delays we're working on, there is no good reason I should believe he is supposed to be ready to leave diapers behind. I imagine moms of neurotypical two-year-olds looking at him, not knowing what his issues are, looking down on me for my inability to housebreak him as quickly as they did. That's absurd, of course: I'm sure I'm the only one sitting on the park bench thinking about that. But while his speech delay and social awkwardness are only obvious after you pay attention to him for a while and know what you're looking for, the pull-up sticking out from the top of his pants is like a little blue flag, announcing, "Look at the freak! This one's not like your three-year-old!"

So we work on potty training, like we work on everything else. And I try to hide my own anxiety, like I do about everything else. And I know that someday he will catch up to the other kids. And I try to remind myself how much progress he has already made. And how much progress I have made. And how much farther both of us need to go.

Friday, June 5, 2009

Stuck on Me

This afternoon, Ryan put a sticker on my hand.

Let me explain how amazing that is.

In Ryan's world, certain objects belong in certain places, and if you try putting an item in the wrong context, the world implodes, he can focus on nothing else, and hysteria ensues. When he puts his shoes on the shoe shelf, they must be on either side of my shoes, soles down, velcro open. He can not play with his airplane if a certain white box is not on the dining room floor, because the rubber duckie that must ride in the plane can only live in that box.

I think this is related to a common autistic trait known as a "figure/ground" issue - the object in the foreground is no more important than whatever is in the background. The white box can not be relocated because the space around the box is as important as the box itself. Also, a tiny detail can define an object - a toy zebra with red eyes is a "red zebra."

Anyway, Ryan loves putting stickers on paper, but try to put them elsewhere and you're begging for trouble. According to Ryan, stickers belong on paper, but do not belong on skin or clothing. More specifically, stickers are tolerable on other people's shirts, but never on Mommy, Daddy, or Ryan's clothes or bodies. This becomes problematic at events that require name tags. The not-on-my-family's-skin rule also applies to ink stamps, temporary tattoos, and microscopic dots of mustard.

Four afternoons a week, Ryan works one-on-one with a visiting teacher - his SEIT, in the alphabet soup of the special ed world. Chrissy is fabulous with him, and he will do just about anything for her. She has been working with him for several months on breaking out ridgid behavior patterns like these, forcing him out of his comfort zone for longer and longer periods until he can, say, tolerate wearing sandals or sit still to play a game.

Occasionally, Chrissy will put a sticker on his shirt and make him keep it on until they finish singing a song or reading a story. One song sometimes becomes two songs, and Ryan will end up wearing a sticker for half an hour without crying. Today, she put a tiny star-shaped sticker on his hand. He stared at it, then started to peel it off. "Put it on your other hand," she suggested. He stuck the star on his other hand and smiled. Chrissy cheered and said, "Go show Mommy!"

So Ryan found me and stuck out his starry hand for me to admire. I oohed and ahhed appropriately, and he actually seemed pleased about it. Then he peeled the star off his hand, and stuck it on the back of my hand. "Here you go, Mommy!" He grinned.

Yay for signs of progress. Something clicked in him today, and he decided that a sticker on the hand isn't the end of the world. It might even be fun.

Thursday, June 4, 2009

Not an Affliction

Recently, I went to a cousin's graduation dinner. I was the last to arrive, and was making the rounds hugging and saying hello to everyone at the table. When I got around to my very-distant cousin "Joseph," he stood formally, clasped both my hands in his, and greeted me by saying, terribly earnestly, "I am so sorry for your burden."

"Burden?" I asked. That I've come alone and left my husband home with our 3 1/2 year old son? That we're having no luck selling our apartment? That I had to take two trains to get to the restaurant?

"To have a child that's so afflicted... it must be awful for you."

I cut him off. "What are you talking about? My kid is awesome!" I smiled and moved on to the next relative at the table.

My son, Ryan, has PDD-NOS - Pervasive Developmental Disorder, an autism spectrum disorder. His brain is organized differently than the average person's, and through a special school and various therapeutic interventions, he is developing the tools that will help him function in a neurotypical world.

Joseph has never met my son. Based on just the word autism, he decided my son must be mute, violent, embarrassing, constantly rocking on the floor and flapping his arms, completely aloof, unreachable, unlovable, alien.

That's not Ryan.

Ryan is the most joyous little boy I know. His laugh makes me melt every time. He loves to play tag and hide and seek. He loves being tickled and turned upside down. He loves letters and numbers, and has been able to recite the alphabet since before he was two. He involves me in his world - often he will grab my hand and say "Come on, Mommy, I show it!" He keeps tabs on the people he cares about - "Where's Daddy now?" or "Mommy, you come back!" He knows the house rules, even if he doesn't always follow them. He can play some computer games by himself, but he prefers to play them with me.

He's a kid. An amazing, lovable, wonderful kid.

And he's on the spectrum.

And as great as some of his challenges are, I wouldn't want him any other way.

Screw you, Joseph.