Saturday, December 31, 2005

Looking forward

I have tried all day, this final day of 2005, to reflect on the year that has passed; despite my best efforts, though, as I try to reflect my mind starts to wander and before I know it I find myself forgetting to look back and beginning to look forward. It's not that 2005 was a bad year. On the contrary, it was a very good year; everyone was healthy, we enjoyed many, many happy times, and Bud made huge strides forward. Perhaps I've simply gotten swept up in Bud's forward strides - the momentum is so great, the ride so thrilling, that there seems to be no need to look back; I'm just keeping my eyes on the next thing to come.

Because when I say I'm "looking forward," I don't just mean that I'm considering the year to come. I mean that I'm filled with anticipation and excitement. It's the feeling of knowing that your favorite author is about to release a new book; that you have front-row tickets to a concert you can't wait to see; that two weeks from tomorrow is your tenth birthday. I am really looking forward to what comes next for Bud, and for all of us.

Friday, December 30, 2005

Calling all tooth fairies

I need to find out the going rate for a tooth. Bud's got his first wiggly baby tooth, so it will only be a matter of time until the tooth fairy will be in business at our house. I don't think Bud would be at all excited about finding money under his pillow. Any other creative suggestions out there?

Wednesday, December 28, 2005

Comfort and joy

Bud has done extraordinarily well through the holiday, despite the unpredictability and irregularity of our schedule. I'm off from work this week, so we've had one fun-filled day of adventure after another - a trip to the swimming pool at the local college, time on the computer at my empty office, a trip to the toy store to exchange a duplicate and pick out anything he wanted, a long car ride to a fun children's museum. They've all been good things, but in Autismland sometimes even too much of a good thing can be dysregulating. And it has been, to some extent. But Bud has recognized it and has zeroed in on the coping mechanisms he needs to keep himself balanced and well regulated.

When I'm dysregulated and need to find a way to cope, I turn to coffee, or Paul McCartney's music, or a really good book. Bud turns to his old friends. So this week, in the midst of new toys and new drumming talent and new computer games and new adventures, we're experiencing the renaissance of Goodnight Moon, the lovely video made by the folks at HBO. The video had been one of Bud's favorites for several years beginning when he was a toddler, but for many months it has been relegated to the back of the video shelf, unwatched and gathering dust. Since Christmas, though, we've seen it repeatedly and heard many, many scripts from it. The book itself is also enjoying a comeback, and Bud has been "reading" it to us over and over again: "In the great green room there was a telephone, and a red balloon, and picture of..."

It makes a lot of sense to me. The new stuff is exciting and he really wants to throw himself into it. But it's the old stuff - the tried and true stuff, the predictable, recitable, entirely known-inside-out stuff - that provides a touchstone, a point of reference, and a jumping-off point. And he's ready to jump again - tomorrow he wants to cash in his bookstore gift certificate to search out two other books from the Goodnight Moon video that he doesn't have, Faith Ringold's Tar Beach and Mercer Mayer's There's a Nightmare in my Closet. He's ready to branch out and add them to the repertoire, secure in the knowledge that he can always return to the great green room.

Tuesday, December 27, 2005

"I love you" more

When I read Kristina's post on Charlie's use of "hi" over at Autismland, I realized that my recent post on the myriad meanings of Bud's I-love-yous did not present an exhaustive list. Since then I've recognized even more uses that I missed.

Like Charlie's "hi," Bud's "I love you" can be an admonition against singing in the car. Last week, as I belted out "Sleigh Ride" in the front, I heard from the back a determined "I love you, Mom. Don't sing." (Translation: "No offense. You're bugging me.")

It can also express gratitude. This morning he shouted up the stairs to ask me to rewind his videotape (in Budspeak, "Mom, it needs to be winding!") When I shouted down to tell him I'd be right there, he shouted back "I love you!" (Translation: "Thanks!")

It also acts as punctuation. Bud has taught himself the alphabet in sign language, using a poster that hangs in the bathroom in his classroom. The poster shows a hand making each letter, then shows the sign for "I love you." When Bud does his sign language alphabet he talks along, "A - B - C ... - X - Y - Z - and - Iloveyou." (Translation: "The end.")

And tonight, as I sat down to blog, I heard Bud in the next room having trouble winding down, calling out for water, telling me that he was scared, and trying anything he could think of to get me to come back in. "Mo - om," he sing-songed out. "Come give your buddy a HUG!" That did it. I peered around the corner and said "Okay, one more hug."

"I love you!" he cheered. "YEAH!" (Translation: "Hooray! One for the home team!") I'll let him go on thinking it was a win for the home team. But we know the truth; it was really a tie.

Saturday, December 24, 2005

"I love you" means never having to say you're sorry

"I love you": the three little words that every parent waits to hear. Many parents of children on the spectrum have to wait longer than most to hear them; some have to learn to recognize other expressions of the sentiment. With Bud, however, we never have to wait long to hear "I love you." Hearing it is not a challenge; interpreting it, on the other hand, can be.

"I love you" is sort of Bud for "Aloha," in that it means different things at different times and in different contexts. Sometimes it's a greeting, as when he creeps into the dark bedroom where his father is sleeping, crouches up by his dad's head and says "I love you, Daddy." (Translation: "I know you're not much of a morning person, but I'd love it if you'd wake up, and if you do wake up, it'd be great if you would not be cranky.")

It's also a farewell, as when I am leaving for work while he's engrossed in watching Jack's Big Music Show on Noggin and I'm distracting him by trying to say goodbye and get one more kiss: "ILOVEYOU!" (Translation: "Okay, okay, goodbye already!")

At other times it's a request, as when he sidles up to his grandfather who is eating slices of apple for breakfast and says "I love you, Papa. What a great breakfast!" (Translation: "Can I have some of that apple?")

Sometimes it's a comforting phrase designed to let me down easy, as when I suggest that we not watch Barney Christmas for the hundredth time and instead watch Elmo's Christmas: "I love you, Mom. Another day." (Translation: "Don't take this personally, but no.")

Frequently it's a diversionary tactic, as when we are sitting at the dining room table, hear a loud CRASH from upstairs, and shout "Bud, what are you doing?" The response comes instantly shouted back: "I love you!" (Translation: "I'd rather not discuss it." A side note, the other common answer to this question in similar scenarios is "Just helping.")

Still other times, it's an admission of guilt, as when I am standing at the stove cooking dinner and he walks up to me quietly and says, "I love you." (Translation: "You know that bowl you told me not to touch...?")

Very often it's an apology: "Bud, please stop banging those pans!"; "I love you." (Translation: "Sorry.")

And sometimes, when he and I are both at our dysregulated worst, when I'm frustrated and angry, when I've lost my cool and started shouting, when I have just frayed my very last nerve, it's a reminder to keep things in perspective, as he moves his impish little face nose-to-nose with mine, blinks his long Bambi-lashes, and gives me a tight-lipped grin: "You not angry; you happy. I love you." (Translation: "Is it really all that important, Mom?" Funny - it never is.)

But my very favorite "I love you, Mama" is the one that comes accompanied by his little arms around my neck, his face buried, breathing warmth into the crook of my neck. That's the one that means - well, just "I love you."

And it's in that spirit at this holiday season that in addition to our usual litany of good wishes, Bud and I send one more out to our friends in the Austismland blogosphere:

We love you.

Monday, December 19, 2005

Reason to celebrate

Clay's birthday party was an unqualified success.

There were two primary groups of children there: loud, rambunctious 4-to-6-year-old boys and louder, squealing-and-shrieking 10-to-12-year-old girls. Almost all of the other children were strangers to Bud. And yet there he was in the thick of things - engaged, smiling, and extraordinarily well-regulated.

He was so well-regulated, in fact, that when the boys' sledding activity turned into a game of human obstacle course he laughed as boys hurled themselves in front of his sled as it sped down the hill, resulting in a jumble of boy arms and boy legs and boy faces covered in snow. He waited patiently for his turn as five boys shared two sleds, and he asked other boys "is it my turn now?" He was unphased when, without warning, Clay jumped onto his sled as it zipped by and held tightly onto Bud's back and they flew down the hill together. He didn't even seem to notice the mayhem that ensued as the girls attacked the boys in a snowball fight that continued until Clay's mom noticed and started ushering them all inside.

He didn't seem to notice. But once they were inside and he had the sleds and the hill to himself he turned to me with a twinkle in his eye and gathered up a mitten full of snow. "I throw at you," he said tossing the flakes of snow toward me in a gentle flurry. "I got you, Mama!"

Inside, Bud took lots of breaks from the crowd and made his way to the playroom where he discovered an electronic keyboard. "Look, everybody!" he shouted down the stairs. "It's Bud's Dance Party!" He played happily upstairs, sometimes on his own and sometimes among a squall of shrieking children. But he joined the group quite a bit as well. He played Pin the Nose on the Snowman - blindfold, spinning, and all. He joined the group for singing Happy Birthday and eating ice cream. He had a perfectly wonderful time, and when it was time to go he protested: "But I want to stay at the party! I want to stay at Clay's house!" Clay's mom promised that he could come back another day, and he grudgingly agreed to leave.

What a milestone we've reached. The best part is that Bud knows it. He's been talking about the party since we left, reminiscing about Bud's Dance Party, jumping on my back to recreate Bud And Clay's Excellent Sled Adventure, blowing his party blower till he just can't blow no more. There's a new aura of confidence around Bud these days. And why not? After all, he's a kid who goes to parties.

Friday, December 16, 2005

Preparing for the party

24 hours and counting. Tomorrow is Clay's birthday party.

I asked Clay's mom, and they do have a dog - a small one, who will be kept away from the party. I talked about it with Bud and let him make the call. He insists that he wants to go, and says "The doggie is barking me. She's won't nearing me." This is my cue to reassure him that, in fact, the dog will not come near him.

I've never spoken to Clay's mom about Bud's autism, but of course in many ways it speaks for itself. I did tell her about his fear of dogs. "Even if you can only stay for 15 minutes," she said, "it would be great to have Bud there."

That was the right answer.

Thursday, December 15, 2005

In the beginning

I started thinking about it months ago when I read this post by Kyra on This Mom, and found out that Fluffy was conceived via in-vitro fertilization after a long struggle with infertility.

I continued to think about it as I considered the explosion in the rate of autism diagnoses in recent years. Clearly, I thought, exposure to mercury via immunizations is one thing that has changed in that time; what else has changed that perhaps I should consider?

I thought about it months later when Astryngia posted these thoughts about stressful pregnancies.

I thought about it most recently when I read Gretchen's post about Henry's difficult entry into the world.

It's still an incomplete thought, but it goes like this: how many of the children who are currently diagnosed with autism would not have made it, say, twenty years earlier? How many would never have been conceived? How many would have miscarried early? How many of them (how many of us?) would have died in childbirth? Without the tremendous medical advances that have been made in infertility treatment, perinatology and the maintenance of high-risk pregnancies, neonatal intensive care, etc., how many of our children would not have survived the first hours, the first days, the first weeks, the first months of life? How many would not have been success stories in Darwin's survival of the fittest?

There are a lot of us out here in the blogosphere posting about our children and our current struggles, victories, advances and setbacks with autism spectrum disorders. But not many of us have posted about the path that led us to where we are. It makes me wonder:

How many of us struggled with infertility? (I did.)

How many of us lost other pregnancies? (I did.)

How many of us had high-risk pregnancies with our ASD babies? (I did.)

How many of us had complicated or troubled deliveries? (I did.)

How many of our children had to remain in the hospital longer than the "typical" newborn? (Mine did.)

Maybe it's all a coincidence. But I'd be interested to know if anyone else has had a similar experience.

Wednesday, December 07, 2005

Brutal truth

Yesterday, Sal posted this on Octoberbabies:

"To be totally honest, TOTALLY HONEST - I love my daughter so much just the way she is that if there were a pill invented tomorrow that could cure her autism, I'm not sure I'd give it to her. Sure, I'd love it if she could communicate better and had an easier time relating but I'd be afraid of losing that adorable little character that runs around the house naked scripting, 'Three sides! A triangle! Like Zee's!!!'"

It's been on my mind since I read it.

I understand what she's saying; I really do. I adore everything about Bud. I marvel at his unique take on the world. I love the poetry and music that is his speech. I truly, madly, deeply love him down to the core of my being just as he is.

But if there were a pill invented tomorrow that could cure his autism, would I give it to him?

Would I give it to him knowing that I would risk losing the adorable quirks, the lovable idiosyncrasies, and the fascinating perspectives?

I would like to say I wouldn't.

But the thing is, if I'm being honest -


I would.

Monday, December 05, 2005

Ho ho ho

In the past, Bud has always been creeped out by Santa. I understand the sentiment; I find Santa a little creepy myself. But this year, the whole Santa thing "clicked" for Bud: I tell him what I want, and he brings it to me! So now Bud is all about Santa - with the caveat, of course, that Bud will not have to visit him at the mall, and that the old guy will agree to drop the presents and vacate the premises before Bud wakes up on Christmas morning.

Regardless, this weekend Bud wrote his first letter to Santa. More accurately, I wrote while Bud dictated. It says:

Dear Santa,
What do you bring for me? I want a movie and a toy and a magic hat and a magic cape and a wand. Serval kittens are great jumpers. Planets. Some drums. Controls.

Then at the bottom, with Hancockesque aplomb, he has signed his name.

I think Santa will be able to deliver in most cases. The controls may not be possible; Bud wants a sound-making control panel like the one in the Teletubbies' house. And one note about the serval kittens: he was watching Zoboomafoo while we were writing the letter. He doesn't actually want serval kittens.

At least, I don't think he does.

Sunday, December 04, 2005

Changing traditions

It seems that the Christmas Eve plan has been on Bud's mind. I awoke yesterday morning at 6:00 a.m. with Bud's face in mine.

"You don't sing 'Happy birthday to you...'" he lilted as soon as I opened one eye. "You sing 'hap-py-birth-day-BOY-JE-SUS!" He sang this out in the conga beat that Oobi uses to celebrate birthdays so that his creator doesn't have to pay the high royalty fees associated with the more traditional melody.

Latin rhythms to honor the sixth anniversary of Christ's birth. I can't wait to find out what comes next.

Saturday, December 03, 2005

Happy Birthday, Big Boy Jesus

Bud hates babies. He has hated them since - well, really, since he was one. I think babies are too much like dogs for Bud - they're unpredictable, they make loud noises, and they tend to divert the attention of the people whose attention Bud wants.

Apparently in school today there must have been some mention of the upcoming celebration of the birth of Baby Jesus, because at dinner tonight Bud announced, "I don't want birthday for Baby Jesus. Just boy and girl."

Now despite our current religious affiliation, we do try to connect Jesus Christ to Bud's experience of Christmas and we continue a family tradition of having a birthday cake for Baby Jesus on Christmas Eve.

So, we had an impromptu family meeting and we've struck a compromise. This Christmas we won't be observing the birth of Christ at Bud's house.

We'll be celebrating Christ's sixth birthday.

Thursday, December 01, 2005

Party boy

Clay invited Bud to his birthday party.

Bud has gone to birthday parties before, but they have always been for the children of my friends. He has not been invited to his very own friend's birthday party before.

Until now.

I'm holding my breath until I can ask Clay's mom if they have a dog, which will be the deciding factor on whether or not Bud will actually be able to attend the party. But even if we ultimately have to decline, it will not diminish the big picture here: Bud is welcome; he's wanted; and he's interested in the idea of going to Clay's party. And that big picture is really, really big.