The Cycle of Life

He comes home chattering about bones. I'm only half listening, my mind is on other things. "What, honey?" I ask.

"We die and then we're all bones," he says.

"What?" I say again, my eyes wide. "Where on earth did you hear that? Did someone at school say that?"

"A- told me." I know A- to be a precocious little girl and I'm not surprised that it was her, only that this came up at all.

I don't recall learning such things in kindergarten, but they have been learning about the life cycle of plants, butterflies, mealworms. As soon as Sam walks through the door he's at his table sketching out his new knowledge. Until recently, the end of life has been a topic easily avoided. But today, Sam wants to talk about death and dying.

Baby, Boy, Big Boy, "Tinager", Grownup, Death, Gone

Huh.

"See, Mom, this is death. Gone. Bones."

"And what do you think about that?" I ask, stealing tricks from my former therapist.

He says, "When we're bones we're in the ground. Right?"

"Well, yes, but then we go to heaven and it's a very happy place, not that here isn't happy... and yes, death is part of the life cycle, but the human life cycle is really much longer than that of the mealworm," I try. Has he realized our mortality?

"Heaven? Kitty heaven?" he asks. "But Kitty is in Kitty Heaven!" he declares. We lost a beloved cat a year ago and all he knew was that it was sick and went away. I guess he thought it moved next door. My fault.

"Yes, he is. But he's so happy there, he has lots of kitty friends. And he eats his favorite cat food and fish every day."

"Oh, no! My Kitty is dead! I am sad!" and he starts pushing out tears. Literally. I can see his nose scrunch up as he tries to make them fall. I am fascinated. But then he is crying, "I want Kitty back! He was my friend! Zoey (our other cat) is NOT my friend, she hisses! I'll never see Kitty again?"

I concede that Zoey is a little mean. I pull a photo of Kitty off the fridge and hand it to him. "No, we won't see him again, but every time you think of him, he'll be here in your heart." I congratulate myself on navigating this subject for now, well aware that perhaps I should have tackled it a year ago. Cowardice.

The next few mornings, a teary Sam appears downstairs clutching Kitty's photo. Although he hasn't seen him in over a year, I can see he's processing. Each morning he tells me how sad he is and that he loved Kitty.

Scenes from a Play Date

I wish that I were the type of mother who came by her mothering skills naturally, who knew instinctively what normal looks like and did not always wonder, when faced with one of her children's many quirks: Is that the autism or is that just quirky? Does quirky = autism?

Well, take today — Sam was invited to a classmate's house for a play date. Because the other mom and I don't know each other very well, she invites me to join them once John gets home from school. Lovely of her. She is very nice and I am happy to get to know someone who has been nothing but warm to me, especially since we just met the week before at soccer.

John gets home, I grab his itouch and we start loading into the car. John is excited and says, "Sam school?" I tell him, no, we're going to get Sam at a friend's house. As soon as we arrive, John rushes by the other mom and heads upstairs. I have no idea why — he's never been here, but the mom waves him up, saying that there's nothing he can get into there. I'm reluctant to have him out of sight, but now Sam runs up to me dressed up as a Ninja Turtle. His little friend is behind him, dressed as a boxer, and looking a tad impatient.

I take in the scene. This little boy seems a lot more mature than Sam and I'm sensing the play date isn't going that great. That's okay, right? Not every play date is going to be terrific, but it looks like at least they both wanted to play dress-up. The other mom says something to her son and he and Sam turn and head back downstairs. She beckons me towards the kitchen and offers me a drink. We trade chit-chat — she's a school counselor I had no idea, she knows someone I know...

And she IS lovely, this is lovely — the idea that I'm the type of mother who gets to have coffee with another mom because our kids are having a play date. But it's a sham because I am not able to relax. There's one boy above me and one below. Who knows what John is getting into. And Sam's face? It looked a little lost and confused even if determined. He can be persistent when trying to play. So I say, "I'm just going to check on John," and excuse myself.

Upstairs, I find him splayed on the older sister's bed. The older sister is, of course, also there and looks a little aghast at the sight of him there atop her many pink pillows. "Oooohh boy," I say, forcing a smile, "sorry he stormed into your room, what a surprise that must have been!" and I scoop him up.

Downstairs, I give John his itouch, hoping it will keep him grounded, and I rejoin the other mom. Her son joins us with a sigh. I ask him where Sam is. At that moment Sam comes yelling up the stairs: "IT'S POOPY TIME! IT'S POOPY TIME!" and heads towards the bathroom. I'm sure my face is red. The other mom says "It's movie time?" I say no and suddenly I see she gets it.

Even though I know it's coming, I pray it's not.

"MOM! CAN YOU WIPE MY BUTT?"

So let me ask you. Is this behavior, Sam's that is:
a) typical 5-year-old acting out?
b) attributable to being on the spectrum?
c) bad parenting?

I'm thinking maybe c? — have got to teach that boy to wipe his own butt.

Teamwork

I clutch John's hand as we approach his brother's school. We are here to pick up Sam after Week 2 of an after-school soccer program, a program I thought would be great after hearing that a few of his classmates were enrolled. In the five minutes it takes to find the gym, no fewer than three teachers greet us, see John, and say "Hi Sam!"

Their faces are puzzled. I watch them trying to sort it out, Sam has a twin? Why didn't we know Sam has a twin?

We find the gym and look inside. Eight or so boys are running around between two nets, a coach is yelling encouragement. There are just a few minutes left and more parents are arriving behind us. John takes in the open expanse, the rolling ball, and yanks me in. Before I can get a good grip, he darts free. At first he just runs the perimeter of the gym, but then he begins to weave in between the group of boys, his eye on the moving ball.

Sam spots him, stops playing and yells, "Coach C! Look, it's John! He's my brother! Can he play?"

Coach C pauses, glances at me. I mouth Sorry! and he says,"Sure, John, come on!"

John laughs and runs in and out of the group, flapping excitedly. Coach C calls the group over for a huddle but Sam won't join unless John does too. He's pulling him and pulling him and I am keenly aware of all eyes on me: the coach, the kids, all the parents...

I weigh my options: go and hoist him out of there risking an epic meltdown or go help him sit in the circle with the other kids. I opt for the latter and as I near him, John yells all on his own "Sit down!" and takes a seat with Sam. Relieved, I kneel behind him.

The coach talks about teamwork and how great they did. Sam interrupts, "And my brother did really great too!" He grins at John and John throws his arms around him. At first I think it's John, excited, wanting to engage Sam in roughhousing, which is known to happen a lot these days. But then, no, I see John's grin and realize that he is genuinely happy to be here, sitting in this gym with his brother.

And then they're done and here we are leaving the gym. Sam says, "Mommy, I want John to come to MY school, not his school, okay?"

I am too choked up to reply.

Apology

Sweet baby, I so often underestimate you. Can you forgive your mommy? I came into the room and caught you opening and closing the DVD player. I know you love to watch the previews over and over and over. But we've talked about this — or rather, I've repeated too many times to count: Do Not Open and Close the DVD Player!

So, of course when I saw you there, Mommy was a little irritated. We go through more DVD players in this house... anyways, I knelt beside you and said sternly, "No, John." I must have startled you because your lower lip started to quiver in a way I've never seen your brother's do, not even once. Your eyes filled with tears — wow, did it take me aback — I think because I'm so used to you ignoring me when I want you to listen.

But I think you're always listening, just not letting on.

You climbed into my lap and put your head on my chest and said, "Sor-ry."

My heart went still in my chest. I looked at your sweet face and thought I had misheard. "Sorry," you said again softly. I've never heard that word from your lips, or seen you so keenly aware of a situation, or had you react to my voice in such a typical way.

"I'm sorry, too, baby," I said.

Our Spectrum Revisited

Over the last year, Sam has made so many strides that his dad and I started to wonder if maybe he was losing his diagnosis. It is one thing to discuss it secretly between us, but quite another for his developmental pediatrician to say, "If he were to be tested again, he might fall off the spectrum," as she did at our last visit.

So we got on one waiting list after another — for OT and speech assessments and the ADOS, or the Autism Diagnostic Observation Schedule. This is probably the only test that the boys have NOT had and it's supposed to be a pretty good indicator of ASD, especially with very verbal kids like Sam.

Six months came and went and still no appointment for the ADOS. One day Kennedy Krieger Institute called to ask if we'd participate in a new research study, one that looks at identical twins to see if environmental factors, but not vaccines, might have something to do with "turning on" an autism gene. And could they administer the ADOS to both boys at our convenience?

I have always wondered if John's early years in the hospital had something to do with the severity of his autism, if maybe a MRSA infection in a 4-month-old baby followed by a four-week course of vancomycin might have contributed in some way.

This study might show that it did.

Not that we would have done one thing differently back then. John needed heart surgery. Because of it he got a staph infection, but without the drugs to treat it, he would have not survived.

But what if we had known that John would be susceptible to developing autistic disorder if his tiny body experienced such trauma? What if even a little extra care in disinfecting his room, the crib slats; limiting visitors to just his parents — what if it could have prevented the MRSA infection? I have no doubt he'd still be on the spectrum, this is just what I believe, but would he be more like his brother?

And will this make me grieve if I find out?

I often come here simply to share something in our lives only to find that I'm not sure how I feel after all.

Star Date: Jan. 2010

These are the voyages of sleepless John, as told by his exhausted mom.

Night comes and we start off hopeful. The boys go to bed with minimal fuss and we settle in for some tivo'ed show, like House or Ace of Cakes, or even a game of Boggle. We sigh, content for the moment, the day and its hurried pace behind us. The clock gets closer and closer to midnight. Husband goes to bed at 11 and the mom, who is just a little greedy, hangs back — loathe to leave the quiet, her glorious time alone.

And every night, of course, she thinks This is the night it will be different. But we are under siege.

January 7, 2010, 1 to 6 a.m.: John is up and ready to go! Five hours straight! His endurance is remarkable, his commitment to the same laugh track, earsplitting.

January 8, 2010, 1 a.m.: John dives into our bed and conks out, sleeps through the night! Is there a full moon? Which planets' alignment produced this miracle? Please, dear god, how do we replicate these conditions?

January 9, 2010, 12:45 to 5:00 a.m.: John is up and jumping! Tonight's entertainment features Elmo and silly talk, but then he crashes after a mere four+ hours until nearly 10 a.m. (mom does too, thanks husband!)

January 10, 2010, 1 a.m.: It's 1 a.m., folks, John doesn't want to be late! But inexplicably, he falls back to sleep until 2:30. Another energy burst hits and he is up until 6 a.m. And then crashes until 8:30. Mad dash to school.

Crazy times around here. People tell me I look great for not getting any sleep. The truth is the body adapts to sleeplessness. It doesn't function very well, but it adapts. We're getting back in to see the neurologist and looking into a sleep study. Thanks everyone who commented and emailed me with suggestions.

Stalking Sleep

He flicks his fingers close to his eyes in the dark. The shadows in the room make it seem like an attack of butterflies around his face. They come hard and fast and are followed by head shaking and loud outbursts — not like he is scared, because then he laughs — but more as if he is excited and retelling some complicated tale in the dark.

He has joined us here in our king-sized bed, the one we so wisely upgraded to when we moved home last year, because 2+ hours of loud shouts and maniacal laughter have already woken his brother once. He volleys between his dad and me, seeking us out with tight hands and cold feet. I glance at the clock: 3:30, he’s been at this for more than two hours. His body nearly hums with energy, with something new — I don’t know what it is, but tonight it scares me because it has a different quality — it's an involuntary compulsion.

I envelop him with my arms and hold him close. “Shh…” I say, stroking his forehead, trying to get him to stop. He is so strong for just five, for such a skinny boy. He pulls away and turns onto his stomach and starts hammering out a beat with his hands on the mattress: b’dum, b’dum, b’dum-b’dum-b’dum, b’dum, b’dum. Over and over.

I try again, whispering a song to try to snap him out of it: "Row, row, row your boat, gently down the stream…”

“Bed!” he yells suddenly.
I say “John’s bed?”
“John’s bed!” he repeats.

Thrilled he’s communicated something (which I immediately expand in my head to Gosh, Mom, I just wanted my own bed, do I need to mime it out for you?) I carry him to his room, hopeful that he will lie down and fall back to sleep at last.

Instead, he stands in his bed and throws stuffed animals around, yelling to me: “Lullaby songs?”, his favorite music CD, one he’s been falling asleep to now for years. Lately, however, he’s asked for it even in the middle of the day — retreating to his room, alone, pushing me out the door. Bye? he urges, then closes the door. I've peeked in to see him organizing his stuffed animals in a circle: first the cast of Sesame Street, then the Backyardigans, then all the miscellaneous penguins (there are many). Obviously in John’s world 3:30 a.m. is no different from 3:30 in the afternoon.

But this — this energy, this yearning for something — the push and pull of his body, the drumbeat on the mattress, the finger flickers, these are things he may do during the day, but at night are magnified a thousand times. We’ve had MRIs, EEGs, we’ve expressed concerns about possible seizures — MRIs have been clean, no sign of seizure activity.

And still: something seems wrong.

He’s been on clonidine for three weeks now, but you would never know. When the neurologist said he had a medication in mind for John, it was all I could do to not jump into his arms and kiss him. I first heard about clonidine from Christine over at Day Sixty-Seven. Oliver’s early success on it thrilled me and made me hopeful that it would be the magic bullet we needed for John.

Lesson 1 — there are no magic bullets.

Lesson 2 — if we know John will be up at least every other night from 1 a.m. on, we really should go to bed ourselves before midnight.

Happy New Year, blog friends.