Friday, June 30, 2006

Word of warning

We have already established that many of you share my propensity to get a word stuck in my head, and because I have grown fond of you I am passing on some important information as a public service announcement, so that you can benefit from my tragic mistakes:

Do not - no matter how strong the temptation or how great the urge - DO NOT watch the televised finals of the National Spelling Bee.

This year, the finals aired in prime time on ABC on June 1. One full month ago.

And for a month, this is what's been on my mind: heiligenschein.

I can't shake it.

Heiligenschein. It wasn't even the winning word. It was an 11th round elimination. But it was high drama. In fact, from time to time I find the whole dialogue coursing through my brain - first the cool, level-headed, unemotional pronoucer, then the increasingly anxious and emotional speller:

"The word is heiligenschein."

"Heiligenschein?"

"Heiligenschein."

"Heiligenscheid? Or heiligenschein?"

"Heiligenschein."

"Heiligenschein?"

"Heiligenschein."

"Are there any other pronunciations of the word?"

"Just heiligenschein."

"Heiligenschein."

This morning I went for a walk and discovered halfway through that I was walking in time to the cadence of this dialogue.

So, please, it's too late for me, but save yourself. Find out when the next National Spelling Bee will air, and make other plans. Cancel your cable if you need to. Do whatever it takes.

In fact, now that I think about it... just to be safe, maybe you'd better stop reading my blog as well.

Wednesday, June 28, 2006

It's all in the eyebrows

It seems that Bud is not just getting good at talking about how he feels; he is also honing his ability to express emotion pictorially. Bud has started working one-on-one with Mrs. H for the summer, and in their first session he drew this picture in his journal:


She did the labeling, but the pictures are all his. This is the first time I've ever seen Bud include eyebrows in a drawing, and he uses them well - the sad face has a furrowed brow; the surprised face has eyebrows raised high; the angry face captures the ever-popular passive-aggressive "My mouth might be smiling, but my eyebrows are telling you how I really feel." (When I'm exhibiting the signs of this particular emotion Bud often raises his fingers to my face and tries to push my eyebrows back up, assuming that if we can just get those darned eyebrows to cooperate we will all feel much better. And, of course, his attempt makes me laugh, which gives me a release, which makes me feel less angry. He's a smart kid, that Bud.)

Some of the things I've read would lead me to believe that this is a Very Important Step for Bud, and though I am only reasonably pleased with this development I imagine that it's the sort of thing that would make Simon Baron-Cohen feel quite encouraged.

I wonder how that would make his eyebrows look.

Sunday, June 25, 2006

In the imbalance

I realized yesterday why it's been over a year since I spent any time with my friend Kay.

Kay and I live more than two hours away from each other. We both work full-time, which makes getting together during the week exceedingly difficult. That leaves weekends. But Kay has a son, Sam, who is 18 months younger than Bud, so getting together on weekends means that we have to make a choice: get together without our boys and give up one of the only days each week that we have to spend with them, or get together with our boys and hope for the best.

When Bud was a toddler/preschooler and Sam was a baby/toddler, our time together was strained because of Bud's strong negative reaction to babies, and therefore to Sam. As they've gotten older, that dynamic has changed - and yet, no matter how we structure our playdates they never quite seem to work out. We've tried playdates at one house or the other, which were okay when Sam was at the developmental stage in which he enjoyed parallel play and preschool television shows. But Sam has passed those stages, and prefers play-acting scenes from Star Wars to reciting scripts from Teletubbies. And though Sam is a sweet, good-natured boy he is also a high-energy, fast-talking, quick-moving one, so the intensity of one-on-one playdates in small spaces with him is just too overwhelming for Bud. We've tried to meet for lunch - which was once okay, but is difficult these days because Bud has developed an aversion to restaurants and prefers to get meals that can be eaten in the car or taken home.

So this time we decided to meet in a place that was familiar to Bud - a science museum that he loves. He has spent a lot of time there, and it's a comfortable environment for him. It meant a three-hour road trip for Kay and Sam, but Kay said that if it increased the likelihood of success she was up for the journey.

I prepared Bud for a couple of days leading up to our museum playdate. He seemed fine with the plan, and even appeared to be looking forward to it. I had high hopes because the atmosphere in the museum would allow Sam to play and engage with other kids even if Bud was not interested in engaging, and it might even allow for some non-threatening parallel play for Bud.

But the moment we arrived at the museum, Bud turned into a Teletubby. He talked like a Teletubby, made noises like a Teletubby, moved like a Teletubby - and disengaged from the bulk of the museum experience. I found private moments to ask Bud if he could talk like Bud for a while. Several times he said that yes, he could do that, and he used his loud, clear Bud voice to communicate a variety of things: "I'm all done now!"; "Can we leave?"; "Can they go home?"; "It's time to go!" As Kay and Sam had spent three hours in the car to be with us, and as my opportunities to be with Kay have been so few, I was reluctant to leave after such a brief stay, so each time I explained to Bud that we would be staying for a little while longer, and without fanfare Bud returned to Teletubbyland.

As a result, Kay and I spent the afternoon engaging with our own sons, often on opposite ends of the museum, trying to fit in conversation in 30-second increments. Kay asked how Bud was doing in school and I tried to imagine how he must seem to her - this boy whom she only ever sees at his dysregulated worst. I wondered if the disconnect between the stories I told and the boy she saw was striking to her, and I wondered what conclusions that made her draw. For his part, Sam simply seemed confused by Bud, and at one point when we left for the bathroom, he said to his mom "I guess Bud is still just a little shy." So he gave Bud space and focused on all that the museum had to offer.

Toward the end of our afternoon, Kay and I found ourselves with a rare opportunity to chat, as our boys were engaged in activities in relative proximity to each other. She started filling me in on her life and for a few glorious moments we were having a real conversation, until in my peripheral vision I picked up a whirl of Bud and I heard a loud, unfamiliar cry. I spun around as a stunned Bud flew toward me, and in his wake I saw a small toddler, his arm in a sling, sprawled on the ground and wailing. His flustered mother was comforting him, and I looked to his grandmother: "Did he do that?" I asked pointing to Bud. She nodded, as the toddler's family gathered around him to make sure that his arm was okay, and that the damage was not critical. I offered a lame "I'm sorry," then turned to a still-stunned Bud who buried his face in my neck and whispered, "I'm so sorry I'm so sorry I'm so sorry." When the wailing had ceased and the boy was pronounced unharmed, the boy's father approached us, put his hand on Bud's shoulder and said "It's okay. He's fine. He's not hurt." Though I appreciated his reassurance, Bud and I both remained shaken.

When we finally climbed into the car at the end of the day, Bud devoured the picnic lunch that he'd refused to eat with our friends, then fell into a hard, deep sleep. I spent the ride home reviewing the day: What should I have done? What shouldn't I have done? Where do we go from here? Bud was in better spirits when we got home and the rest of the day passed quietly.

At bedtime, after stories were read and lights were out, I cuddled next to Bud and he threw his arm around me and put his smiling face nose-to-nose with mine.

"Was today a hard day or an easy day?" I asked him.

"A hard day."

"How did today make you feel?"

"Sad."

"What made you feel sad?"

"My friends."

"Because...?" I asked tentatively, not even sure what kind of response I was looking for.

Bud was quiet for a minute as he thought about the question. Then he said:

"I'm lonely of you."

It stung my heart.

I'm lonely of you. It wasn't Kay and Sam who bothered Bud. It was me. It was the way that I was because they were there.

I'm lonely of you. I don't want to share you. I don't want your attention focused on someone else. I want our time to be us. Just us. Just you and me.

I've been thinking about it all day. It explains so many difficult times - including his final days of school. Those days were not just dysregulating because the routine was different; they were difficult because I was there. Bud is always understanding of the commitments that take me away from him - I have to work, I have to go to a meeting, I have to be away from you but I will be back and then we will be together again. But my appearance at school made no sense to him - Here you are, at the place where you come when it's time to take me away. You do not have to be at work. You and I could climb into the car together and be off on a great adventure - but you are choosing not to do that. You are staying in this place where we don't have to stay. You are choosing to do something that is Not Right.

It also explains why he has done so well at the social functions that I knew from the start would be difficult for him - the weddings, the graduation parties, the family functions - when my full attention was focused on him; when all of my energy went into making sure he would be okay; when I didn't try to participate in the ongoing activity but just sat huddled with Bud on the sidelines - just as we do in church each week, sitting far in the back, away from everyone else, so that we can "Just watch." Conversely, it explains why he has done "well" during those events when I've engaged with other people but allowed him to overdose on screen time - when I've chatted and visited and laughed with other people while Bud has slipped deeper into a fantasy world; when I've stepped aside and allowed the computer, the television, the portable DVD player to do the parenting.

So now that I have this information, now that I can understand his perspective in a different way, what do I do with it? It's the same push-me/pull-you dilemma I encounter so often. If I choose the route that is easiest for Bud, the one that doesn't challenge him to manage through the social engagements and play dates, they will never become familiar or seem less frightening. But if I force him into them when he's not ready, it may feel to him like I'm turning my back on him, leaving him on his own - alone and lonely of me.

And what about me? I adore the time that I spend with Bud. But what of my need to have real, genuine, adult interaction that is not about my work - to have friends? It's extraordinarily difficult for Kay and me to find moments to spend in each other's company, but I need them. I'm lonely of them. I'm lonely of her.

I know there has got to be a point of balance. There must be a line at which I can give Bud the right amount of time and attention - at which I can be the sort of parent he needs - and still have some time and attention left for myself. There must also be another line at which I strike the right balance between pushing Bud beyond his comfort zone and shielding him from extreme discomfort. And there must be a point at which these two lines intersect. But it's a moving target, shifting constantly as Bud's needs and my needs change and evolve, making it more and more difficult to find.

Maybe it means that achieving balance is not really possible. Maybe I should be striving for a reasonable, livable level of imbalance. But if that's the case, on which side of the imbalance is it better to err? And who pays the cost if I don't choose well?

It seems that all I can do is make my best guesses, take calculated risks, and engage constantly in assessment and revision. Sometimes things work out even better than I'd hoped, and Bud and I have moments of triumph; other times - like yesterday - we fall face-first in the dirt and both end up a little bruised, then have to spend some time brushing ourselves - and each other - off.

I'm glad that Bud was able to find the words to tell me why yesterday was so difficult for him. As painful as it is, I want to know when he is lonely of me. But what to do with those words - how to reassure him - how to help him - what to do next - I'm afraid those are all matters that remain in imbalance, and will need a lot more assessment and revision.

Friday, June 23, 2006

Heart beeps

There's something in the air these days.

No, really; I mean that literally. Every couple of weeks, when there's a night when the air is full and heavy and the bedroom is humid and breezeless, Bud wakes up with fits of sneezing. It happened last night. He was already in our bed by the time it started, around 2:00 a.m. And this episode was particularly aggressive - full-body sneezes that shook the ground in rapid fire, again, again, again, and filled Kleenex after Kleenex after Kleenex. I never imagined that sinuses so small could produce so much substance. By now Bud and I both know the drill when this happens - a teaspoon of Benadryl doled out in miniscule doses, one drip on the spoon at a time, snuck in between raging sneezes and blows of the nose - followed by a juice box, Juicy Juice orange. Only Juicy Juice. Only orange. Then we wait as long as it takes for the sinal storm to subside.

Last night's wait was longer than most, as this particular allergy attack gave Bud a full aerobic workout. Finally, the sneezes stopped and Bud flopped down, exhausted, onto his belly, his face buried in the pillow. And for the first time that hour, the room was silent.

"What's that sound?" Bud asked, his face still in the pillow. I listened, but heard nothing but the soft snuffles of my husband, who always seems to be able to sleep soundly through these sneezing fits.

"I don't hear anything, Bud. What does it sound like?"

"My heart is beeping."

"It's beeping?"

"Yes."

I rested my head on Bud's back, and felt his racing heart drum against my ear. "It is beating very fast, Bud. Try taking some deep breaths."

Bud breathed in and out, and I kept my head on his back, willing his heartbeat to slow down and allow him to relax himself back to sleep. Then I lifted my head and moved it back to my own pillow.

"Mom, can you check my heart again?" Bud asked.

I moved closer and returned my head to his back. He snuggled in tight and, despite the increasing humidity in the room, pulled my arm around him.

"Thanks, Mom," he said, then fell asleep.

For the record, I did check his heart when I put my head down.

It was perfect.

Bud's it

I tagged Bud in my last post, and have recorded his responses below. We sat down together and I wrote out 1 - 5 clearly for each question so that Bud would have a visual cue to give him some structure but, as you may know, Bud's a bit of a free spirit and outside-the-box type thinker. So here's what we've got. (Please note that I did not edit for accuracy, and we do not actually have jellybeans and donuts in our refrigerator.)

5 things in the refrigerator (he came back to this category each time he finished with one of the others):
1. food
2. orange
3. apples
4. strawberries
5. jellybeans
6. meatballs
7. noodles
8. donuts
9. pancakes
10. peanut butter crackers
11. goldfish
12. blueberries

5 things in the closet:
1. shirt
2. pants
3. undies

5 things in your bag ("could be your suitcase, or your backpack, or any bag"):
1. toys
2. toothbrush
3. a blue ball

5 things in the car (I think I actually asked "What goes in the car?"):
1. Dad
2. the kaleidoscope
3. "stop and go goes in the car"
4. party hat

Bud and I "tag" and invite all of our young friends on and off the spectrum, and their parents, to answer with or without words, in whole or in part - Isaac and India, Charlie, Henry and Thomas, Roo and BrotherRoo, Sol and Panda, Oliver and Sam, Sweet M, Gabe and Boo, Fluffy, Pete and Luca, Duncan, Matthew and Joseph, Liam, B, SmallBoy, e, Alexander, Aiden, CTM&R, Ti'anna and Ethan, Derek, Sam & Zach, Adam, Henry, Reed, Littleman... and all other friends old and new that I have forgotten to include!

Thursday, June 22, 2006

Tagged

So, I don't normally do these things, but since I've been tagged by Kristin, I'll do my best...

5 things in my refrigerator:
- a dozen farm fresh eggs laid yesterday by my friend's chickens (no kidding)
- water in squeezy bottles to entice Bud to drink water instead of juice or milk
- nectarines (all hail the arrival of summer fruit!)
- Lactaid 1% lowfat milk (for use in coffee or on Special K Fruit and Yogurt cereal)
- roasted red pepper hommus (which is particularly tasty when eaten on these)

5 things in my closet:
- lots of clothes that need to be ironed and make me sigh and say "I have nothing to wear"
- 3 pairs of Birkenstocks
- Chuck Taylor Converse All Stars, low-top, unbleached white
- academic regalia, fresh from the dry cleaner
- assorted skeletons

5 things in my purse:
- iPod shuffle
- Paul McCartney key chain (yes, I really *am* that dorky, thank you)
- spearmint Ice Breakers Ice Cubes instantly cold gum (false advertising, incidentally)
- this list of books
- Clinique Long Last Soft Shine Lipstick, Creamy Nude

5 things in my car:
- XM Sky-Fi2 satellite radio
- less than a quarter of a tank of gas
- a kite
- a goop-covered, crumb-filled car seat
- iPod cassette adaptor

5 friends I'm tagging:
Many friends have already been tagged and some are sans internet connection, so I will say "you're it" to
- Gretchen
- Big Orange (if you don't have a purse, you can substitute backpack, briefcase, or junk drawer; if you do have a purse, I celebrate your diversity)
- Square Girl
- Anyone else who would like to participate, by posting either in your own blog or in my comments section, and
- Bud (stay tuned...)

Weather or not

I'm not sure what web sites Bud's been surfing lately, but it seems he's been learning about severe weather events. We've enjoyed a stretch of warm, sunny days this week, but the forecast calls for storms to roll in for the weekend. Bud and I were talking about our plans for the days to come and I told him that we might have to plan some indoor activities in case we get a rain storm.

"Maybe it's a TWISTLER!" Bud said excitedly, seemingly confusing a cyclone with his favorite red candy.

"I don't know if we'll get a twister, Bud," I said.

"Or maybe a TOE-NADO!" he squealed.

I don't know... Twistlers and Toenadoes? I'm not sure where he's getting his information, but I'm picking up a heavy duty umbrella just in case.

Tuesday, June 20, 2006

Boy of summer

After much consideration, we've decided to roll out those lazy, hazy, crazy days of summer for Bud. He won't be attending summer school.

He's eligible for the school district's summer session: a wonderful program for the month of July, four mornings a week in a small class with a low teacher-to-student ratio. Initially I jumped at the opportunity to enroll Bud in it. Then I watched Bud struggle through the last days of the school, and I started to consider the transition to the summer program from his perspective:

an unfamiliar (and long) commute

to an unfamiliar classroom

in an unfamiliar school building

with unfamiliar teachers

and unfamiliar routines

with unfamiliar children

for a month.

Then a farewell to everything and everybody involved in the summer program and a month off before making the transition to first grade and a new classroom in his old school with a new teacher and mostly new routines with some familiar kids and some unfamiliar ones.

He could do it; I know he could do it. It would be a difficult transition at first; he would be resistant, he'd cry a bit, he'd spend a good deal of time reciting scripts and pacing, but eventually he would settle in and make the best of it.

But to what end?

I'm not concerned that he'll "regress" during the summer. I'm not concerned that he'll be bored if he's not in school; Bud does not get bored easily. I'm not concerned that the lack of routine will be dysregulating for him.

In fact, on the contrary, I think Bud could use some down-time. I think that having a fun, lazy summer will recharge Bud's battery and help him to fully engage in making a successful transition to first grade in the fall.

So instead of going to school, Bud will spend four days a week with Nana, who says she's up for the adventure. We've arranged for two hours a week of private tutoring in reading with a teacher who knows and loves him, which will give him a chance to focus his energy on an area of strength and not just on areas of deficit. We'll continue to do RDI at home. We'll take advantage of programs at the library. We'll seek out opportunities to play with - or at least near - other children.

And other than that, Bud will spend his time splashing in the inflatable pool we set up in the backyard, making trips to the lake to float on his orange tube and catch minnows in his net, tending to the pumpkin seed he planted in the garden, exploring the woods around our house, visiting the children's science museum, going to the park to toss rocks into the stream, eating popsicles and ice cream, creating elaborate pretend-play scenarios that involve sending beach balls and soccer balls and basketballs up and down the slide at the playground, playing hard, getting dirty, and sleeping well.

This summer Bud's just going to be a kid.

Monday, June 19, 2006

iPod: Good for the teeth, too!

I've mentioned before that Bud's iPod is a great defense against barking dogs. As it turns out, it works on dentists as well.

Bud has actually come a long way from his early dental visits and usually greets the news of a check-up with enthusiasm because he knows that it will end with a very cool toy being produced from the trunk of my car. (Yes, I know this is bribery, but it is effective bribery... though I'm afraid it means I'm going to have to buy him a pony the first time he has to get a cavity filled.)

His visit six months ago was glorious. He had a full dental exam and cleaning without a moment of anxiety. In retrospect, I think that the hygenist for that visit was just a good match for him - she read his cues, she used the right language, and everything clicked.

On Friday Bud had another check-up and though this hygenist was nice and patient and slow, the same magic didn't happen. Bud let the hygenist (the "mother dentist") examine his teeth, but balked when it was time for her to clean them. I think she just used too many words, asked too many questions, and gave him choices about thing that confused him. The turning point was when she starting discussing toothpaste flavors with him - "You can have mint, orange, bubble gum, grape..." - and his anxiety began to build. She told him she would use "the bubble gum," and I think he believed she was going to brush his teeth with actual bubble gum. Bubble gum is an unknown to Bud, and he just decided he didn't want his teeth cleaned after all.

My anxiety began to build at that point as well, and I realized that it was heightened by the horrible music blaring from the radio on the shelf beside my head.

That's when I remembered that I had Bud's iPod in my bag.

In the midst of the "I don't want bubble gum, I want MY toothpaste!" rebuttal, I slipped the headphones over Bud's ears, and he settled right down. The hygenist cleaned his teeth (with her bubble gum toothpaste, but a regular low-tech toothbrush), and Bud didn't protest at all when the dentist (the "father dentist," that is) came in to do the final inspection.

I made mental notes to myself so that for his next visit I'll 1) slip a note to the hygenist ahead of time giving her a few helpful hints about what to say and how to say it, and 2) make sure he has his iPod in place from the start. I'm certain that Bud will look forward to his next visit as well. Despite some minor glitches along the way he ended this one with a smile, bouncing along to the music, making his way to the car... and heading straight for the trunk.

Friday, June 16, 2006

Ripples

I've been thinking a lot this week about the way that lives affect each other - how our actions become like pebbles thrown into a lake, rippling out and shifting the course of other people's lives without our ever knowing it. I've been thinking about it mostly because this week Mrs. H's father-in-law, "Gramps," passed away very suddenly. I didn't know him, but he's been on my mind.

His obituary was in the paper today, and it mentioned a lot of wonderful things about him: he was a family man, a singer in the church choir, a craftsman, a volunteer, a veteran - a much-loved man who will be deeply missed.

What I've been thinking about is his hat.

At some point in his life, Gramps had a tweed hat. I don't know how long he had it, nor how often he wore it. I don't know if he would have recognized it as his own if he'd come across it last week. But somewhere along the line, he gave the hat to his daughter-in-law, Mrs. H, the woman who has been such an extraordinary presence in Bud's life this year, who has taught us both so much, and who is living and working in our town, it seems, because this is the town where Gramps summered for many years, and the place he chose to retire. Mrs. H brought his tweed hat to her Kindergarten classroom and put it in the dress-up area.

And Bud found it.

Bud wore Gramps's tweed hat almost every day this year. Perhaps it was the sensory input of the heavy tweed weighing down on his head that helped Bud feel anchored, and allowed him to use his hands for something other than covering his ears. Maybe it was because the hat reminded him of the one worn by Sesame Street's Sherlock Hemlock. Maybe the hat smelled like a grandfather and reminded Bud of his own beloved Papa. Whatever the reason, Gramps's hat became a touchstone for Bud this year. It grounded him; it helped him feel safe. He never asked to take it home with him, the way he did so many other beloved items in the classroom. To the contrary, at the end of every school day Bud happily returned the hat to its shelf in the dress-up area, its mission accomplished for the day.

It's hard to imagine Bud's year without Gramps's hat. It's impossible to imagine it without Mrs. H. And I think we were lucky enough to have both in our life because of Gramps. So this week I've been thinking of him fondly, and I've been feeling sad about his death.

I didn't know him... but he changed my life.

Thursday, June 15, 2006

Three reasons to celebrate

Sunday, June 18 is a big day for our family.

June 18 is Father's Day, a day when Bud and I will celebrate DAD-NOS's daddyhood by preparing breakfast in bed for him. Bud saw Moose A. Moose do this on Noggin and has been practicing ever since by bringing Daddy plastic food on a tray. He can't wait to do the real thing.

June 18 is also Paul McCartney's birthday, and as such it has been a recognized holiday in my world for the better part of 30 years. This year is especially momentous, of course, because it's not just any old birthday for Paul; it's his 64th birthday, which makes it a Major Event in the life of a McCartney fan. And, as the Big Six-Four is falling during a tough time for our Paul, it seems especially appropriate to celebrate him grandly and send lots of happiness out into the universe in his honor.

And, finally, June 18 is Autistic Pride Day, which the sponsoring website describes as a "day for positive events relating to autism spectrum conditions, for people on the spectrum and their families and friends...Events such as walks, parades, picnics and parties are expected, for people to have fun and relax and know that people with autism are valid members of the community." Despite the fact that every day is Autistic Pride Day in our home, we will happily join others in the autism community on Sunday and celebrate our little boy, who is always proud of himself and who makes us so proud, too.

I wonder if there's a way to tie the three celebrations together. Maybe Bud and I can wave his flag as we march up the stairs with Daddy's breakfast tray, singing "Will you still need me, will you still feed me?"

Or should that be "volonté vous néanmoins m'alimentez"?

Tuesday, June 13, 2006

Hindsight, foresight, and insight

In retrospect, Friday should have been Bud's last day of school.

That sort of thing is always so much easier to see in retrospect, isn't it? And there it is, clear as day from this vantage point: Friday was the last "regular" school day, when routines were the same and the flow of the day was predictable. But I'm always afraid to set low expectations for Bud, to assume that "he couldn't possibly" or "he would just never." And so we ventured forth into these final two days; I tried to prepare him for the out-of-the-ordinary activities that would end the school year, and I hoped for the best.

Yesterday his class had a very low-key "end of the year celebration," in which parents were invited to come in for the last half hour, hear the children sing a song, and then eat some cake. No big deal, no high stakes, no pressure. Mrs. H, Miss Josephs and I had talked about Bud's level of participation in the singing portion of the program, and I assumed that one of three things would happen:

1. Bud would sit with Miss Josephs and the other children and listen as they sang,
2. Bud would sit with Miss Josephs and the other children and play the bongos as they sang, or
3. Bud would sit in the audience with us.

I didn't consider the fourth option: Bud would pace the classroom, furiously scripting something about going with Mom and watching the kids from his apartment building, as the parents arrived. He would get more agitated upon seeing me, and would burst into tears when he learned that we would not, in fact, be going to our apartment building (since we do not live in an apartment building). Bud would sit in the hallway with Mom and Dad, sobbing loudly, while the other children sang.

Guess which one happened?

A clear-thinking person would chalk that up as a learning experience and exit the school year gracefully at that point, don't you think? But not me. I didn't want Bud to miss the last day of school's "Fun Day." It was a lovely school-wide celebration with music, games, and a bounce house for the Kindergarteners. But it was just too much for Bud. I was there with him again - and again, he wanted to go to his apartment building. For the first hour or so, the other children made crafts while Bud registered his protest in shrieks and bellows: "No! You can't make a necklace!"

Things got better once the activity moved outside. He made it through the whole afternoon by seeking out activities after other children had abandoned them. He spent most of his time at the sponge relay site, where the other children used sponges to transport water from one bucket to another. Bud used the sponges to transport water from one bucket to his head. But he did bounce in the bounce house when one of the girls in his class took him by the hand and invited him in. And he did enjoy his ice cream, even though he insisted that we take his ice cream back to the classroom instead of eating outside with everyone else.

The fact is, he did a lot better at Fun Day than I did. I was tense and anxious for the duration of the seems-like-four-days-but-is-really-just-three-hours event. My dysregulation was heightened by the fact that when I arrived I was handed a "Fun Day Volunteer" t-shirt - bright yellow, at least two sizes too big, and so long that it covered my shorts and made me look like some kind of miscreant creeping around the schoolyard with no pants on.

It was only when I got home, my knees still wobbly and my shoulders still knotted with anxiety, that my husband pointed out the irony in the shirt I was wearing and I was able to have a good laugh about it:


You can't make this stuff up.

So, Bud's Kindergarten year ended more with a shriek than a bang, and I've made mental notes so that next year we will plan differently for these year-end events: scale back expectations, plan an escape route or two, get a smaller t-shirt or wear long pants. But, of course, you never can predict these things - sometimes you plan for the worst and get the best. Sometimes you just have to grit your teeth, get through it, and hope that later on you'll be able to find the humor in it.

One thing is certain: nothing can diminish the fact that this was an extraordinary year for Bud. And that's a fact that remains the same no matter what your vantage point.

Sunday, June 11, 2006

Go fly a kite

That wasn't an insult; it was a recommendation. We had a glorious kite-flying afternoon today.

Actually, we had two false starts. We tried to fly our kite in a big, open college athletic field but, twice, moments after we had our kite aloft people arrived to walk their dogs and Bud insisted that we had to leave. For our third attempt we moved to a big, open college parking lot that's not known for its appeal to dog walkers and we had the grounds - and the skies - to ourselves. The wind was strong and warm and our kite soared toward the clouds. Bud was delighted to find that he could hold the kite string "all by myself!" and keep it in flight.

And, of course, the metaphor was striking - our big boy, his last day of Kindergarten just two days away, moving forward, reaching out, aiming high.

And flying.

Saturday, June 10, 2006

Field experience

Thanks to Mrs. H, we've had a pretty amazing "a ha!" regarding Bud's recent behavior.

Several months ago, there was a staffing change in Bud's classroom. The classroom aide who'd been there during the fall left, and was replaced by Miss Josephs, a warm, soft-spoken, child-focused assistant. She is precisely the sort of person to whom Bud is usually drawn. To my surprise, though Bud has clearly had warm regard for her, he's kept an invisible wall between himself and Miss Josephs. She has respected his need for some distance, but has spent time and energy trying to make connections with him.

This week, everything changed. Bud has been tripping over himself in his effusive proclamations of love for Miss Josephs. At school he has been her constant (and adoring) companion. At home, he talks about what he's done with her and what they'll do together next. Tonight he told me, "I go for a walk with Mom and say 'Surprise, Miss Josephs!' and that will cheer Miss Josephs up!"

We've all been scratching our heads wondering what has prompted this rapid change of heart. Then yesterday, Mrs. H read my recent post about Bud's fascination with the new Sesame Beginnings DVD, and wrote me this e-mail:

Hi there - I've been thinking about the New Beginnings post. Miss Josephs has been asking me "why now" questions in regard to the undying show of affection Bud has showered upon her the past two days. She insists that she has done nothing new, or changed her behavior towards him lately. (Although she has always been sweet and quiet spoken.) These behaviors do seem like they had come out of the blue, and there seemed to be "something" to it there that I couldn't name; so my response was - "Enjoy it, you two have a great connection now."

However, as I read the blog about the Sesame Street DVDs, I can't help but replay the scripts, voices, actions, and mannerisms he uses toward Miss Josephs. For lack of any other analogy - it's almost... Mothering? Nurturing? I can't find the expression. It does feel like that "love affair" stage that a younger child might establish with a caregiver. You should see the facial interplay...it's not the same kind of coy "flirting" that he had done with me at first, and then with others. This is an "open face", "eye to eye" exchange. With all the RDI work that you have been doing at home, and the bit that we try here - it does feel like a passage into some new territory.

It seems that Sesame Beginnings is doing more for Bud than I first thought. Yes, he enjoys watching the interactions between babies and caregivers. But somehow, it seems that he recognizes it so much - it resonates so well with him - that it has given him the confidence to strike out on his own into previously unexplored terrain. For the first time, he is establishing a relationship not simply by responding to cues, but also by sending them. He is initiating relationship, inviting it, nurturing it. And he's in love with the feeling it has inspired.

In his book Solving the Relationship Puzzle, Steve Gutstein introduces the RDI model and talks about the need for children to be able to move past the skills they learn in the "lab" to be able to apply them in real-life situations. He writes,

Generalization, the desire and ability to use relational skills outside of treatment settings, is a critical step, akin to taking a product from the lab and "field testing" it. In our model, it involves gradually expanding the complexity of the relational field, by having the child work with different partners, increasing numbers of people, adding peers, increasing flexibility and teaching the child to be a co-creator of new activities.

It seems that Bud is in the midst of his very first field test - and the early results are extraordinarily promising.

And humble too

Nana bought Bud a net on a long pole. She explained that this summer they will take it to the beach. They'll fill a bucket with water and use the net to catch a fish to put in the bucket. Bud said he thought that was a great idea, then he put the net over his head.

"Look!" I said. "We caught a gorgeous fish!"

"No, it's not a gorgeous fish," Bud replied. "It's a gorgeous BOY!"

True, Bud. Very true.

Friday, June 09, 2006

Luov letter

I'm still swooning.

I had to go to a meeting last night, so my mom went through Bud's bedtime routine with him. This morning she asked me if I'd gotten the card he'd left on my bedside table before he went to bed. I rushed upstairs and found the card that I had given to my mother for Mother's Day.

He had taken it, and over the place where I had signed my name he wrote his own. Then at the top of the page he wrote my name: "MOM."

And then, with no prompting or help from Nana, he wrote this sentiment:


Don't you just luov it?

More horror, more heartbreak

According to news reports, by her own admission, on May 13 Karen McCarron drove her autistic 3-year-old daughter Katie to her mother's house, where she knew no one was home.

She put a plastic bag over Katie's head and held it there until Katie stopped breathing.

Then she drove to the grocery store and bought ice cream.

Yesterday in an Illinois courtroom, Karen McCarron entered a plea of not guilty to the charge of first degree murder.

I read the news story as Bud played with his Teletubby dolls on the floor next to me. He had them crashing into each other and falling down.

According to Katie McCarron's grandfather, Michael McCarron, who is quoted in the same article, Katie was "a happy, endearing child who loved to swing and play in the grass and would line up her Teletubby dolls so they could 'kiss' each other." He made this picture of Katie available; as you can see, she is playing with her Po doll. It's just like Bud's.


My heart is broken for Katie all over again.

Thursday, June 08, 2006

New beginnings

Bud has been eagerly awaiting the release of Sesame Beginnings, a new line of DVDs that feature beloved Sesame Street characters as babies and focus specifically on the relationships between the babies and their caregivers. For what seems like months he's been watching the video clips available on the PBS website and scanning the DVD aisles of every store we enter to see if they're in stock yet. Last week, thanks to partial funding by the Tooth Fairy, Bud was finally able to take one home.

I was surprised that the series held such allure for Bud, as babies have never been among his favorite things. I imagined that he'd pop the DVD in once, see that there were actual human babies sprinkled in among the Muppets, and abandon it entirely.

I was wrong.

Bud is absolutely captivated by this DVD. All week he has been seeking me out to re-enact parent/child moments from it - songs, games, interactions (though he is quite clear that in our version we must change all child-references from "baby" to "boy.") I watched him watch the DVD this morning; he was transfixed, grinning, his face only inches from the screen. And it wasn't just the Muppets. His big smile got even bigger when he watched real-life pop singer Brandy interacting with her 3-year-old daughter Sy'rai.

Then it hit me.

The target audience for Sesame Beginnings is children 6 months and older. Based on his intellectual and cognitive development, Bud should be far beyond it. But based on the work he and I have been doing together with RDI, I recognize that this is precisely on target with the level of his relational development.

I think Bud loves this DVD because, perhaps for the first time, he can relate to it. He knows why the babies and parents are relating to each other the way they are. He knows how it makes them feel. He knows why they continue to seek it out, and he understands the things that they each do to keep it going. Just like the 6-month-old children that the Sesame Beginnings producers had in mind when they put it together, Bud looks at the characters' interactions and he sees himself.

I looked at the Sesame Beginnings website this afternoon and saw that they describe it this way:

Sesame Workshop is breaking new ground through the introduction of an innovative research-based DVD series for parents and young children that encourages learning through parent-child interactions. Based on research that shows that young children learn best when experiences are shared with a loved one, these DVDs -- Sesame Beginnings -- are specially designed to help parents and caregivers encourage their child's curiosity and interest in learning during everyday interactions.

I was struck by how, with a few alterations in language, this description could be used to describe the goals of the earliest stages of RDI - the stages, in fact, that Bud has only recently mastered.

The folks at Sesame Workshop have come under fire with the release of Sesame Beginnings because the development of a line of DVDs for infants stands in stark contrast to the recommendation by the American Academy of Pediatrics that children under two have no exposure to television. Perhaps I should give Sesame Workshop a call; it seems Bud and I may have discovered a whole new target audience.

Monday, June 05, 2006

(R)evolutionary parenting

Bud is "a child with the diagnosis of autism."

Bud is "a child with the label of autism."

Bud "is on the spectrum."

Bud "has autism."

Bud "is autistic."

These are some of the ways that I've heard parents and professionals talk about children. I've used many of them myself. In some ways I can use them to trace my thinking about Bud's autism.

When Bud was initially diagnosed, I viewed autism as "other" - an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part. I'd read about the importance of using "person first" language - "people who use wheelchairs" instead of "the handicapped;" "people living with AIDS" instead of "AIDS patients" - and so I incorporated "My son has autism" into my vocabulary and used it the same way I'd use "My son has a head cold."

But as I came to understand Bud better, I learned that his autism is not like a head cold. It is not one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy. About that time, I read “Why I Dislike Person-First Language,” written by Jim Sinclair, who is autistic. Sinclair makes a persuasive argument against the use of person-first language when referring to autistic people. One of the several cases that he makes struck me deeply:

Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person.
Over the past several months, as I've been experiencing this evolution in my thinking about Bud's autism, I have done a lot of thinking about the concept of "cure." To be honest, I have never been particularly cure-focused either in my philosophy or in my actions. In a post on Autism Vox today, Kristina references a New York Times Op-Ed piece by Cammie McGovern about the fervor with which many parents seek "total recovery" for their autistic children. McGovern writes,

When your child is initially diagnosed, you read the early bibles of hope: "Let
Me Hear Your Voice," "Son-Rise" and other chronicles of total recovery from
autism. Hope comes from a variety of treatments, but the message is the same: If
you commit all your time, your money, your family's life, recovery is possible.
And who wouldn't do almost anything - mortgage a home, abandon a career or move
to be closer to doctors or schools - to enable an autistic child to lead a
normal life?

Now, as the mother of a 10-year-old, I will say what no
parents who have just discovered their child is autistic want to hear, but
should, at least from one person: I've never met a recovered child outside the
pages of those old books. Not that it doesn't happen; I'm sure it does. But it's
extraordinarily rare and it doesn't happen the way we once were led to believe.
As I read McGovern's essay I remembered that I own Catherine Maurice's Let Me Hear Your Voice, the book she calls one of the "early bibles of hope". I can't remember if I bought it myself or if someone gave it to me. I know that I've had it for a long time. I also know that, despite the fact that I read books about autism and autistic children all the time, I have never read a single page of it. It wasn't a conscious decision, nor one that was philosophically or politically motivated; it just never felt like the right book to read. In fact, as I think about it now, I have only read one book in which a child appeared to "recover" - and I loathed the book. The books that spoke to me - the books that are my bibles of hope in the land of autism - are the ones in which the authors acknowledge their fears and struggles as they delight in their autistic children: Paul Collins's Not Even Wrong; Beth Kephart's A Slant of Sun; Charlotte Moore's George and Sam. These are the parents I want to hang with; these are the children I long to know.

At the same time, even though it's not one of my goals, "cure" is not a fighting word for me. There is much that is not known about autism; I've read a great deal of speculation that in the years to come, the thing we now know as "autism" will be seen as a great number of different, if related, conditions. It's plausible to me that there may be some conditions that are being called "autism" but that are not, in fact, autism as I know it. There may well be neurotypical children out there who are having reactions to foods or toxins that are manifesting in autistic-like characteristics; I simply don't believe that Bud is one of them.

From his earliest moments, I knew that there was something different about Bud - not that there was something wrong with him; just that there was something different about him. As strange as it might sound, I began to have these inklings before Bud was even born. My twin pregnancy was high-risk and I was followed closely by perinatologists. As a result, in the later months of my pregnancy I always knew which baby was which, and where each was located in my belly. Consistently when we went out in public places - the mall, crowded parties, etc. - Bud's brother would get very excited, as though he was happy to be there. In contrast, Bud would try to wedge himself under my ribcage as though he was trying to get as far away as possible. When we had ultrasounds, Bud's brother would dive face-first toward the sensor and seemed to be saying "Look at me!" But Bud turned his back and tried to hide behind his brother, and seemed to be saying "This is all too much for me." I have read that when one identical twin is autistic, the chances of the other being autistic are very high. Despite that, and though I will never know for sure, I believe that just as Bud has autism but not spina bifida, his brother would have had spina bifida but not autism.

So what does all this mean? If I'm not trying to "cure" the autism, what am I trying to do?

The analogy that's been buzzing around my brain in recent months is this: I'm trying to react the same way that I would if I knew that Bud was gay. He may well be gay - he probably won't know for several more years. I have no idea what the future might hold for him and what challenges he might face. Despite that, I need to do the best I can right now to help Bud lay the foundations that will serve him best, whatever his sexual orientation.

It's not really a far-fetched analogy. We are not defined by our sexual orientations; at the same time, our sexual identities are important parts of who we are and they affect every aspect of our lives throughout our lives. Until 1973, homosexuality was listed in the Diagnostic and Statistical Manual of Mental Disorders. Many parents are still devastated when they learn that their children are gay, and they go to extreme lengths to try to "cure" them. Even less reactionary parents are often consumed with fear and anxiety as they contemplate their children's future: Will they ever marry? Will they have children of their own? Will they suffer harassment? Will people mistreat them? Will they experience discrimination? Will they be happy?

So now, before I know what the future will hold for Bud, there are things I need to help Bud learn: about love, about respect, about partnership, about self-esteem. As he gets older, I will need to help him learn the things that teenagers need to know. And then, ultimately, I will need to step aside and let him use the things he's learned. Or not use them. But if I learn that Bud is gay, I will never try to make him "not gay." I will never suggest that he try to "pass" or that he keep his sexual orientation secret. I will not tell him that he should try dating a few girls, just to find out if he actually likes it.

If Bud is gay, it will be because he is emotionally wired that way. And, similarly, I believe that Bud is autistic because he is cognitively wired that way. So I will not focus my energy on trying to make him "not autistic." I won't teach him how to "pass" or keep his differences under wraps. But I will try to help him build the foundations that will serve him best as an autistic person in a largely neurotypical world - foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he's learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

The goals from there? They'll be entirely up to him.

Friday, June 02, 2006

APB: Tooth Fairy

Bud's day (and mine) began at 4:45 this morning, when he was delighted to find the dollars that the tooth fairy left under his pillow. He had only one concern: she took his wiggle tooth. It seems he's not a fan of the "exchange" element of the tooth fairy's business. He prefers the Santa ethos of something-for-nothing (or, something-for-good behavior, at any rate) to the quid pro quo scam the fairy is running. All was quickly forgiven, though, with the promise of a weekend trip to Toy R Us with Dad to spend his Tooth Fairy bounty.

Speaking of the fairy, Bud reports a sighting in the wee hours of the morning. Here is what we know:

She is a mother fairy.

She has wings.

She looks like a princess.

She flies. (He spotted her when he "looked up the ceiling".)

She is big.

Should you encounter anyone who fits this description, see what you can do about getting his wiggle tooth back, would you?

Thursday, June 01, 2006

The grasses all weigh screener

Bud has a toy lawn mower that he loves. For as long as I can remember, he's called it his "motor." I assumed it was because one of his favorite fair-weather activities is pushing his toy around the yard as his Dad pushes the machine with the big loud motor.

Tonight after dinner Bud and I were in the kitchen when we heard the telltale sound of grass cutting beginning in the yard. Bud jumped up and looked at me with a sense of urgency.

"I have to go outside, Mom," he said. "I have to help Dad motor lawn."

Of course. Mow the lawn. Motor lawn. Motor.

Not even wrong.

Good call

I was sitting at my desk when my cell phone rang.

"Hello?"

Silence. "Hi."

"Hi, Bud!" (Bud??? You never want to to talk on the phone!)

"Guess what?"

"What?"

"My tooth came out!"

"It did?? Wow! That's so cool!"

"Yeah. I take it to school."

"That's a great idea. You know who'll want to see it?"

"Who does?"

"Sophie! Her tooth came out yesterday, remember?"

"YEAH!!!"

And, just like that, one tiny baby tooth gives way to spotlight three great big giant steps forward.