Monday, September 29, 2014


We lose our way,
We get back up again
Never too late to get back up again. - Toby Mac

Chloe's at the age now where she's not only figured out how to crawl and get into everything, but she's also pulling up to stand -- which inevitably leads to falling.

Each day I watch her, and I try not to hover. Especially if she's on carpet, because I know the fall won't be that bad.

Lately I've found, when the toppling over happens, that I'm slower to rush to her. I wait to see if she can recover on her own. If she's really upset, I will go and pick her up, whispering in her ear, It's okay. You're okay.

One day when her tears quickly dried and she wriggled out of my arms so she could try her hand (or I should say, little legs) at standing once again, I realized that I was watching something absolutely essential.

I realized that I don't want to just teach my kids to believe in themselves. I don't want them to be smart or athletic or popular or even obedient or controlled. Those are all good things, no doubt. But more than anything I would like them to love God. Love their neighbor as themselves. And to be resilient.

I was the kind of kid who fell apart at everything. The school counselor once called my parents to try to find out why I cried so much. I tended to look at an individual situation that was upsetting me, and then tack on every other thing that I had a reason to be upset about in life, and would quickly down-spiral.

This type of reacting followed me to adulthood, and to the workplace. I remember coordinating a newsletter that didn't come out quite as I'd hoped, and a negative comment from the boss sent me to the bathroom in tears, feeling as if I were eight years old again.

Recently I read that this type of all or nothing, explosive thinking is very common for people on the autism spectrum. It's the reason why one bad moment can cause Ethan to proclaim that "This day is terrible!" and to start naming all of his perceived injustices over the past week. It's about regulating your emotions, in part. It's about perspective. And that word again: resilience.

In the Sunday paper the other day there was a section on people who had faced tragedy and come out on the other side. I read and marveled at the woman whose family had been murdered; the father who forgave and even befriended the man who'd killed his son.

These extreme examples are closer to miracles than the result of sheer effort and determination. Most of us will not have those kind of life-shattering circumstances.

But resilience can be choosing to keep trying in math even when you got a failing grade. To press on and make friends when you feel left out. Recovering from a break-up without making foolish choices on the rebound. Using a layoff to take a new career direction instead of sinking into despair.

It could be choosing to keep believing even when your faith has been wounded.

For Chloe, today, resilience is learning to get back up when she's fallen. Just as someday, she'll need to climb back on that bike when she's fallen off and scraped her knees.

And so I hang back, wait, and watch. I try to remember that always rescuing my children and fighting their battles is just one way to help them, but not always the best way. And I choose to believe: maybe now, maybe today, I can practice resilience, too. Maybe I can trust that it's never too late to learn.

Tuesday, September 23, 2014


I don't write about Anna all that much on here, mostly because the older she grows the more fiercely protective she becomes of her privacy (as with all tweens and teens). So I won't go into too much detail. But I will say this: on Friday Anna broke her arm just above the wrist in two places, and we are so darned proud of her.

Three years ago she fell off the monkey bars and had a slight fracture near her elbow. It was not a pleasant time. Physically, the break wasn't as bad (she almost did not need to be casted). Emotionally, the incident wore all of us down. Anna HATED having a cast. She didn't like standing out. She couldn't stand people asking what had happened. She wanted long sleeves to cover her cast. Forget anyone signing it; she wanted to pretend it didn't exist. It was a very long three weeks or so.

This time around, aside from being concerned about her pain and things healing correctly, both Dan and I wondered how we'd cope with the drama again. Except -- Anna has been fine. She's headed off the school with short sleeves, and patiently put up with the "62 times" she was asked about her arm at school, in her estimation. She was a little upset about sitting out gym class, but overall she's kept in good spirits. She's been cheerful, and dare I say...mature? about the whole thing.

Sometimes -- and I know other parents out there understand -- sometimes as a parent, you just need that. Sometimes, when there have been too many days when advice falls on deaf ears, when your children make the same mistakes again and again and again, as a parent you just want to crawl under the covers and wonder, is anything I'm doing making any difference?

In parenting the garden analogy holds up so well, indeed. Parenting is a LOT about planting seeds and waiting. Watering. Watching. Hoping. Praying. Wondering if something is going to spring up that wasn't there before. Trusting that small actions are making a difference in the unseen, and that someday, somehow, we will see the fruit.

On Saturday while Anna rested her swelling broken arm we watched Ethan take to the soccer field once again. The game was an ugly one. Let's just say I lost track of how many goals the other team scored, and for a good portion of the game, the only goal his team had was one accidentally scored by the other team.

I watched Ethan closely, because as we all know, the best laid plans of behavioral color codes and promised prizes sometimes only go so far. I saw him start to break down but wipe away his tears. He kept looking over at me, and I'd give him a thumbs up. At the end of the game, the score of which was something like one zillion to three, he asked, "Are you proud of me for having control?" My grin could have split my face in two. I high-fived him and we headed to Dunkin' Donuts.

These moments are fleeting. So much of life with school-aged kids ends up being about lost homework assignments and backseat fights; little white lies and messy rooms. As parents we spend so much time instructing, listening, cautioning, (hopefully) modeling. And there are many days when it seems absolutely futile. But then...then here and there we catch a glimpse. Like that seed popping up from the ground and stretching its leaves to the sun.

I will never, ever take it for granted.


Thursday, September 18, 2014

The Other Side of Autism

"Why is Uncle Andy doing that?" Ethan asked somewhat disdainfully. This was last month, when we were in Maine at our camp with my parents, and my brother was visiting for the weekend as well. At that moment he was out on the swing, making the kind of noises my mostly non-verbal brother makes when he is upset and not getting what he wants.

"He's feeling stressed," I told Ethan. "Uncle Andy likes things to go a certain way." Or in many certain ways. In Maine, like in all of Andy's life, he has a schedule. Not only are there routines to keep, but Andy is constantly thinking about the next one. Often they involve food. This time around, he was upset because we didn't drive to the ice cream place a few towns over. Things like this set him off. Not having pancakes when he asked for them. Not going out in the boat with my dad. Not taking a walk. Not having soda. The list goes on and on.

"But why isn't he talking?" Ethan asked. "Is it because he doesn't know any better?"

I looked at my son, and I didn't know what to say. Before I could think, my mom chimed in. "It's because he has autism, Ethan. His brain works differently. His kind of autism makes it difficult for him to talk or understand people, and he doesn't like when his plans get changed. It's hard for him."

I felt as if we were balancing on very thin ice. I waited for the question: What is autism? but it didn't come. Instead, he started mimicking some of Andy's noises in an almost mocking way.

"Stop that," I said sternly. "I know it's hard to understand, but Andy can't help it."

And with that, the subject changed, with so many things left unsaid.

I wondered. I wondered about that day when Ethan asks what is different about him. I wondered about him hearing the word "autism" and trying to reconcile that he has what his uncle has, but in a very different way. Would it frighten him or leave him feeling profoundly grateful? Would there be a way, someday, that he could help us understand my brother better, my brother who is so often so difficult to reach?

My brother enjoyed life in his own way over the weekend. He swam; he demanded chips. He had some of the elusive ice cream. He swung on the swing for hours. Loudly. He stressed because the baby was sleeping in the room he usually changed in. He tried to sneak food. Lots of food. He insisted on going for walks at certain times. He looked at all of us there and smiled: he does, undoubtedly, love his family.

Ethan stopped asking questions. He seemed to satisfy his own curiosity by just concluding, as he had that first day, that "Andy just doesn't know any better."

This is what I wish I could convey better than I have, then I will. That I sit here and write all kinds of cute stories about Ethan and his quirks, about his love of drawbridges and cul-de-sacs, of his fumbling over the English language or missing key social cues, and maybe it seems I see autism as just that: endearing and eccentric and sweet. Maybe I sound like one of those people who gush that they wouldn't have their child any other way, autism and all, and that autism is not such a bad thing, just a great teacher, that autism is their child's "superpower."

It's the kind of thing that really angers those caring for someone who resides on the other side of the autism spectrum, day in and day out.

I see Ethan and I see Andy. And I'm not sure how someday I could go the Pollyanna route of telling him "Autism makes you like a superhero!" "Autism is what makes you cool and special and different!" Those statements may very well indeed be (almost) true for someone like Ethan. But then there are the times when autism is debilitating, when it leaves the person in a body and mind they would rather not have, and leaves their family exhausted. Beyond stressed. Finding it difficult to cope.

I understand the impassioned battle between those who admit to hating what autism has done to their family member, and those who feel as if admitting to hating autism equates to hating the person, because it is so woven into who they intrinsically are. I understand because I see it, the two sides of the coin, the seesaw of the autism spectrum, when I look at my brother and my son.

There are no easy answers. Maybe the best and simplest one is (and really this is something that applies to life in general) is to not make blanket statements about autism, because never, ever are two autisms the same.

Ethan will see this someday. I pray that instead of teasing, he will look within and find compassion, and empathy, and maybe even a desire to help those who are wired somewhat similarly, but are much less able to express themselves and give others a peek into their fascinating, sometimes stifling, amazingly complex inner world.

Sunday, September 14, 2014

It's Not Whether You Win or Lose...

Saturday morning. Clouds but no rain. Ethan's first soccer game ever, at the field just down the road, was scheduled for 9 a.m.

This whole soccer mom (and dad) thing is new to me and Dan. Anyone who knows us realizes quickly we aren't exactly athletic people. I may like to watch (some) sports, but I'm not particularly good at playing any of them.

Sports for me during my school-age years entailed this: a one season-stunt in 4th grade on a softball team called the North Atlantic Termites. I spent most of the time in the outfield. We were always losing to the Country Cupcakes. Our last game was mercifully cancelled due to a tornado warning, of all things.

Dan's sports career is blank. Zilch. Anna followed in our footsteps, which is why for the past almost-decade we haven't gotten to know other families in town out on the soccer fields.

And then we have Ethan, who loves all games that involve a ball. First there were those couple of simple classes at the community center. Then t-ball. But now, for the first time, he's playing soccer, we don't have much of a clue and I (shhhh) don't even really LIKE soccer.

But Ethan does, and has spent the last four months practicing kicking a ball around in the backyard and playing with the neighbors. It seemed only natural we sign him up to do the real thing. And hence there we were, pulling into the parking lot with about 137 other parents Saturday morning.

In our town the way they structure teams, at least in Ethan's age bracket (kindergarten and first grade) is that each is named after a (soccer-loving) country. They have one practice a week and a game Saturday morning, on one of the four fields just down the street behind the school administrative office building.

Ethan's team is "Portugal," a group of scrappy kids who look as if they are on the younger end of the eligible age bracket: save for Ethan and another boy, who tower over the others. We happened to be playing "USA" on the field as far away from the parking lot as one can walk. We didn't have chairs (ours are covered with cobwebs somewhere). We didn't have a blanket (no time to dig around for one). We looked like definite newbies, but the other parents there seemed nice enough. They seemed human.

And then USA swooped on the scene. We spotted their classic red, white and blues first. Then I saw a mom who's one of the head PTO people or something like that at Ethan's school. She's always there. She knows everyone. Nearly the entire team was full of blonde haired, blue-eyed girls who looked as if they were out for blood. The coach was blonde and beautiful and looked as if she may run marathons. The other coach was buff and had a whistle around his neck he wasn't afraid to use. He had the kids doing warm-ups as if they were undergoing military training, as soon as they arrived.

Did I mention he had a large American flag in tow that he firmly staked into the ground so it could wave proudly in the breeze during the game? Oh, and then there were the "cheerleaders" -- a gaggle of apparent siblings whose job was to wave miniature American flags and come up with various "U-S-A" chants throughout the game.

The Portugal parents watched USA doing their warm-ups. We looked at our kids, half of whom were sitting on the ground, the others doing half-hearted jumping jacks.

One mom yelled out to her little guy in a panic: "Hey! If you play good and score a goal I'll buy you Legos!" Another parent snickered, "What? Did they hand pick the kids on the USA team?"

"U-S-A! U-S-A!" the little girls chanted. I wondered if this was how the puny Uruguayan team felt walking out into the open ceremonies of the Olympics, next to the hordes of grinning, oh-so-confident Americans. I consider myself fairly patriotic, but I couldn't help it: for a minute, I really, really didn't like America. At all.

Whistle. The game began. We held our breath...then realized our team wasn't half-bad. And Ethan was doing fabulously. I marveled as he maneuvered the ball across the field and away from his opponents. He kicked -- and scored! Parents were cheering his name. "That kid's good," someone murmured. He and another boy were the standouts. "We're beating them," he said nonchalantly at the water break, chugging his drink. The Portugal parents slapped hands as if to say "Take THAT, USA!" We sat back to watch the second half of the game...

...and then the wheels came off the bus.

Our kids started to get tired. Really tired. We apparently were missing at least one player while they had several to spare. They kept rotating kids in and out, returning a well-rested little blonde superstar to the field, while our kids were sitting on the ground and their parents yelled "GET UP and GET MOVING!"

Ethan wasn't sitting on the ground. But he was holding his head in his hands, because USA had scored three unanswered goals. Thank God I had warned the coach ahead of time this issue might come up. Ethan tried to pull it together, but every time his team tried and failed to score, his face crumpled.

The game ended at 4-3, USA, with Ethan lying on the ground, crying. USA smugly picked up their flags and trotted off to whatever other perfection they had planned for themselves that day.

Of course, while Ethan may be challenged more than most with keeping his emotions regulated, this was no way to act on the field. We had a looong talk after the game. He slowly transitioned from claiming he was never playing soccer again, to screaming about how much he wanted to win and how he was a loser, to accepting his fate and being ready for next week.

We're ready, too. We've talked about winning and losing. I asked him if Tom Brady was rolling all over the field crying when the Patriots had gotten whupped by the Dolphins the week before. We've crafted a "mental" social story of sorts. If he starts to lose, he needs to repeat to himself:

Sometimes you win, sometimes you lose.
I'm still a good player. And I'm going to try my best.

We also have a color-coded behavior system we're going to try, to work on keeping his emotions in check. If he starts to lose it, I'm going to warn him he's drifting from green to yellow, or yellow to red. If he can stay in green or yellow for most of the game, he'll get some kind of little prize.

I have no idea if this is going to work. These ideas are sometimes good in theory and not-so-hot in execution. Will Portugal recover from their first loss? Will they learn to play an entire game rather than just 30 minutes? Will USA continue to embarrass the competition with their flag-waving antics? Will Ethan not just shoot and score, but hold back the tears when the other team does? What does our next opponent, "Belgium," have in store for us next week?

Stay tuned.

Wednesday, September 10, 2014


For the past couple of months now Chloe has been going to physical therapy for a tight muscle in her neck. The technical term for this is torticollis, it's fairly common, and it's really not a big deal. They just do stretches and perform different exercises to help her get a full range of motion when she's turning her head to the right.

By coincidence, and the fact that I was tired of hauling Chloe through the metropolis that is Connecticut Children's Medical Center, we've switched her appointments to the same outpatient center where Ethan has gone for various rounds of speech and occupational therapy and social skills groups for the past five years. And during our first appointment, we were on the mat doing our thing with the physical therapist when Ethan's very first therapist ever, an occupational therapist who started seeing him a month after he was diagnosed, was working with a child right next to us.

Here's the thing about therapy. I knew not a thing about it, before Ethan. I thought physical therapy was something you went to after a serious injury (as I had after my really bad ankle sprain years back). Speech therapy was something for "slow" kids. And occupational therapy? I had no idea.

Since then I've gotten quite an education. Years of watching therapists in action has me thinking like one. I have great respect for them, and appreciate the way they weave therapy into play for children. Thanks to five years of appointments now, I know the difference between gross and fine motor skills. I understand terms like "crossing the midline" and "motor planning" (which has not much to do with motor skills). I can spot an immature pincer grasp when a child is coloring and can point out signs of low muscle tone. I know that some kids don't want to communicate or talk, while others have actual physical issues preventing them from speaking (apraxia). The list goes on and on.

Because I now have a pretty good idea of what therapists are looking for, therapy with Chloe is really, well, not fun.

The first day, when she was evaluated for PT, I asked the therapist straight out if she was on track developmentally for a five-month-old. "Oh yeah, sure," came the matter-of-fact answer.

And yet still, I've wondered. This is what happens when someone comes out of a little room and tells you your son has autism. And you watch your son getting evaluated for speech and OT and feel as if he's failing the biggest test of his life. And you have a physical therapist at the preschool surprise you that your son has low muscle tone that the doctor never brought up and really should have physical therapy, too.

I don't like assessments and evaluations. I really don't like surprises.

And so I wonder if they think Chloe is not being social enough since she doesn't really like to smile that often at the therapists wrenching her neck in certain ways. When one therapist mentioned her liking to mouth everything I wondered if she was mouthing things too much for a baby her age, if it's some kind of sensory thing, if she should be playing better with her toys. I wondered when the therapist asked me, kind of making conversation, if I "brought up any concerns" at Chloe's last doctor's appointment, if it was a hint that I should be concerned about something. I wonder if her foot really does turn out a little the way Ethan's did or if I'm just imaging things. I wondered when the therapist joked about how "flexible" Chloe was if that really meant "low tone." Even after they told me she was pretty mobile for her age, and sitting up better than most babies her age, still, I wondered.

And yeah, when I saw Ethan's old therapist in the big room, I wondered after we exchanged pleasantries if she wasn't wondering why I would take the risk with my family history of autism and have another child. I wondered if she was secretly watching Chloe, looking for signs.

Yeah, I tend to wonder way too much what everyone else is thinking.

I can't tell you how much I wish I were one of those happy-go-lucky types who doesn't overthink. Such is the beast that is anxiety. It's never satisfied. I've learned I may never be able to stop the thoughts from swirling. But I can choose how I respond, because really, that's the only thing over which I have any sort of control.

I am really, really grateful for the therapy Ethan (and now Chloe) have received. I'm amazed at all of the resources that are out there and what a difference they can make. But still, I'le glad when she's done, and we get a break -- from not just driving out there every week, but all of the imagined scrutiny. Until I get a break, from me.

Saturday, September 6, 2014

Kids Singing Songs

"I LOVE riding the bus!" Ethan announced the other day.

"Really?" I asked, relieved. This was news to me, as I'd thought the bus ride was a necessary evil making his already long day longer.

"What's your favorite thing about riding the bus?" I asked him. No big surprise: he likes seeing the stop sign come out, looking to see if they're going to cross railroad tracks, and noticing the way some of the school buses in the line have round lights, but a few have square ones. I asked if he talked to any kids, and I got a matter-of-fact, "Noooo. I'm too busy watching." As in watching the stop sign go in and out.

But there's something else. I learned this the second day of school, when he came in the house singing something under his breath. "What's that?" I asked him.

"They were singing it on the back of the bus." He suddenly squirmed nervously. "There's a part that you're not going to like, I just know it. It has potty words."

Take that, those who think people on the spectrum can't see from another person's point of view.

Now I was definitely intrigued. "How does it go?" I asked. He murmured something to the effect of

I don't wanna go to Mexico no more, more, more
There's a big fat policeman standing at the door
If you open the door, he will pee on the floor
I don't wanna go to Mexico no more, more, more
I think I understood. "Were the kids on the bus singing this and clapping their hands against each other?" I asked him. "Yeah," he nodded. "They have another one...Miss Mary Mack, Mack, Mack-"
"-All dressed in black, black, black," I interjected, and he looked up in surprise. "Yeah, I know that one. We used to sing it when I was a kid."
I could see us on the playground, slapping hands at recess. These are the songs of childhood, and I've always wondered exactly how they originated; how they spread; how much they differ from region to region and from generation to generation. Would you believe I once wanted to write a term paper on the topic? Deep thinking, I know.
Ethan really, really loves the songs on the bus. He doesn't take part. No way; he's got to watch that stop sign. But he's listening and committing them to memory. Someday, they'll be the soundtrack of his growing up.
"Do you know this one?" he asked, and I didn't, but Anna did:
Crunchy ice
Sing it once
Sing it twice
Crunchy ice
Sing it once
Sing it twice
Then freeze!

What is it about kindergarten to oh, 4th or 5th graders, particularly girls, (Anna's starting to grow out of such things) that makes them want to sing songs and slap hands?
I asked them both about Miss Susie, who had a baby and named him Tiny Tim, and put him in the bathtub, to see if he could swim, but they didn't know that one.
"They do another one about bubble gum," Ethan piped up.
Bubble gum, bubble gum in a dish
How many pieces do you wish?
...And in an instant I was back in Nonna's yard early on a summer evening, gathered with the neighborhood kids trying to determine who would be "it" first for hide and seek. Everyone had their fists out, and when it landed on you, you tried to quickly calculate what number would bring it around back to you (1, 2, 3, 4 and you shall not be it!), and if you took too long, someone would accuse you of cheating, and then everyone would be arguing and yelling at each other. But finally we'd work it out and we'd all go running and as the sun sank we'd crouch in our places, hearts beating, praying not to be found.

It's been two weeks, and I'd be lying if I said I wasn't still nervous about what Ethan might pick up on the bus (I can only remember bigger kids when I was young, screaming Twister Sister's "We're Not Gonna Take It" at the top of their lungs but adding the "sh" onto the word "It"). I'd still love if he'd talk to someone once in a while rather than gazing at signs and lights.

Yet, he may not be slapping hands and singing, but he's listening. He's learning something inconsequential but sweet, something that most kids learn. Maybe, he's making a memory. 

Monday, September 1, 2014

Last Times

I pulled up the sheets and listened to the rain drumming on the roof. This was one of the last nights of the last weekend of "unofficial" summer, and the kids and I were in Maine at Dan's grandparents' house.

We'd had such a fun day. There'd been the family party with relatives we hadn't seen in years. Dan came up too and surprised everyone. We all sat and talked and I basked in the way it was somehow easier to take care of three kids than two, now that the older two are, well, older, and Ethan no longer needs to be hovered over quite so much.

But now I was listening to the rain, and thinking of how many times I'd slept in this house over the past 20 years since Dan and I had met, and suddenly I was thrown back to my own grandmother's house and the sleepovers of my childhood.

In an instant, I could see, I could hear it all: Nonna picking basil from her garden on warm summer evenings and putting it in a little glass in the kitchen. The small dish of vanilla ice cream she always served me before bed; the blue crystal soap flakes she shook into my bath water so it looked like "the ocean." I could feel the softness of the towel and smell the sweetness of baby powder as she patted me dry.

I could see little me in that big bed in the room with the nightlight and scary shadows. I could hear the comforting murmur of the television downstairs where Nonna laughed at Saturday night sitcoms while I tried to sleep.

In the dead of night, her cuckoo clock would count down each hour, and I would wonder what it was like for Nonna, sleeping in the room next door all alone since my grandfather had died years earlier. In the morning there were runny eggs for breakfast (eggs were not her strong point) and the mourning dove always cooed from the pine trees that bordered Old Lady Novak's yard next door.

I could see it all; I could almost taste the memory, but what struck me was the thought: When was the last time I slept over at Nonna's? When was the last time I'd slept under those crisp sheets so neatly folded over in the big twin bed? When was the last time, before I got my part time job and became too old for such things; before Nonna stopped remembering and had to go live in the home?

I had no idea.

During pregnancy, it's the type of thing people like to say, the type of thing I said to myself this last time around, knowing (aside from some serious divine intervention) that we are DONE adding to our family. Enjoy this. You will never have this again. Remember each baby kick. Remember the feeling of the tiniest of humans cradled in your arms.

I had to wean Chloe early, due to having to take some eye drops for early glaucoma that are not safe for nursing. And while to be honest I think breastfeeding is kind of a pain, and I certainly would never be called a poster child for the La Leche League, I sat there with her cradled in my arms as she nursed that weekend I was weaning her and wondered, tears streaming down my face, Is this the last time I will ever nurse a baby? I couldn't bear to think of it, so I kept telling myself maybe not. Maybe not. Maybe the next feeding would be the last time. Or the one after that.

When Anna pulls out her My Little Ponies or Lalaloopies from under her bed and brushes off the dust, the fleeting thought comes: Will she ever want to play with these again?

Lying awake last night and listening to the rain whisper, I wondered if it isn't better to not know. That whatever that night was when I was 13 or 14 when for the last time I ate Nonna's ice cream and fell asleep to her listening to the "Golden Girls" laugh track, it was better that I stepped unknowingly up another rung of the ladder called Growing Up, and she eased ever-closer to getting old, growing less independent.

Sometimes knowing these things would break us. We can't live in that state of melancholy, always trying to snap mental pictures and morbidly wondering when the good times will end.

But I wonder if we can't just carry that thought in the back of our minds like a little whisper. Maybe for those times when life seems stale; the kids are driving us bonkers; family gatherings feel like stress-inducing obligations.

There is something happening today that we may never have again. Something sweet. Stop for just a moment. Make sure you don't miss it.