Tuesday, November 27, 2012

Five

I think the best moment was the look in his eyes.

We were sitting in the living room, waiting for people to arrive to celebrate Ethan turning five, and there was no mistaking the anticipation as he peered out the window and bounced around on the couch.

When he turned one, Ethan seemed completely unaware what was happening at his birthday.

When he turned two, he didn't want to open presents.

Three was a little better, and four was the first time he seemed really excited to open gifts.

Five was the first birthday he was excited about people.

And so although many people couldn't come due to the holiday, and although Ethan doesn't yet ask for toys and has to be encouraged to play with his new presents rather than go back to his old computer standbys, and although the card that played the song was probably his favorite gift, and although I look at the little friends he was able to invite (at least one could come!) and wonder down the road as the boys grow and mature if the so-called "typical ones" will still want to be friends with my quirky little guy, if they'll still be there celebrating...

In that moment, we couldn't have asked for anything more.

On Wednesday, Ethan will officially turn five. While his five may look different than some boys his age, I hope and pray we will always keep our eyes on his path. I pray he will always feel loved and accepted by his family, and that he would know how proud we are -- not of how his milestones or interests stack up against others his age -- but of him.

Happy Birthday, my boy.






Wednesday, November 21, 2012

Balloons


Anna had the idea first, I think at her 7th birthday party.

Instead of hoarding all the pink and purple helium-filled balloons, instead of keeping them inside until they drooped and withered, or instead even of handing them out to people to take home, she wanted to gather everyone and simultaneously let them go, up to the sky and out of sight.

It's funny...as a child, I would have been traumatized. I was the kid always crying over the balloon that got away. I remember losing a balloon at a Memorial Day parade and still whimpering over it in bed that night. I kept seeing the balloon in my head, small and red, drifting away, cold and lonely somewhere. It just about broke my heart.

But Anna had different ideas. And so we gathered in a circle and counted down and of course someone let theirs go early and someone's almost got stuck in a tree, but we let them go.

This year, she wanted to let them go again. And in October, when we were celebrating my mom's and brother's birthday, they too decided we should go out into the yard and have a balloon liftoff ceremony. Now Ethan is asking me if we can let balloons go at his birthday.

I was thinking about this the other day, picturing the myriad colors wafting into the sky as we all squinted to see until they had truly disappeared.

The balloons looked pretty enough scattered about the house and in the yard, for the few hours before they began to sag and droop. But when we opened our little and big hands and watched them all get caught by the wind...now that was something spectacular. That was what had everyone talking. That's what had everyone looking skyward with wonder.

I can't help but ask what happens when we live our lives with this same open-fisted posture.

We can hold on tight and try to order our little worlds and think we have all of the answers to how it MUST go.

But sometimes, letting go is ironically what brings us the most freedom.

Those balloons never soared until someone let go of them.

And better yet, Anna helped remind me that sometimes, actually, letting go can be downright fun.

As Beth Moore has said, talking about the tragedy of living a boring life, hands knuckle-gripped to the steering wheel you've wrestled away from God: "It's not a wild ride if you're the one driving."




Saturday, November 17, 2012

A Letter

Dear Other Parents in the Windsor Public Library yesterday,

I know how I probably came across. I came off like some sort of tired out, worn down mom who was constantly nagging her son and who didn't seem consistent in her discipline. And you know what? You'd be right.

To the gramma watching her granddaughter play with puppets at the "puppet theater"...thanks for being kind enough to offer for Ethan to play along with her when you saw he really wanted to do a puppet show, too. I wanted to reject the offer but you were too kind. I wanted to reject the offer because I knew what it would turn into -- Ethan's shark puppet wanting to bite and attack your granddaughter's ballerina and firefighter. I knew this because that is the one puppet show game Ethan wants to play right now. We get in an ongoing battle about the show NOT being about abusing the puppets or even the people watching, but so far that message has not sunk in. I wanted to explain things but didn't have the energy to explain things, like that my son is just starting to want to play with puppets in general and has trouble generating ideas. He couldn't just jump into your granddaughter's play scenario, so he decided to go into attack mode again. He's not just a brat, I swear. Although yesterday he was acting pretty darned bratty.

To the people around the Lego table: I'm sorry about the noise. I have told Ethan time and again he cannot play Angry Birds with the Legos, although this is his favorite game. In case you hadn't figured out, Angry Birds means making sound effects from the game and then bringing his hands over to the huge piles of Legos strewn all over the table and then smashing them. I always encourage Ethan at the Lego table because sometimes lately he has started to build and play. But the darned Legos don't stick very well to the old worn down table, and for someone who is trying to build up his hand strength and fine motor skills, it's very frustrating for him. Hence, we get Angry Birds.

And to the mom who probably didn't appreciate my son getting other kids to roll around the dirty floor, I'm sorry. Here's what you have to know: two years ago, even a year or less ago, my son didn't want to engage any other kids at the library. He wanted to run around the book stacks, try to flip the light switches, and check out the vents in the floor. Most parents would stop their kids fairly quickly if they decided to roll across the library floor, and I did try. Only, he was rolling TO other kids. He wanted to go to them and wanted them to watch him. He wanted to play with them in the log tunnel but didn't know quite how, so he was loud and slightly annoying, yelling, "I see you!" while peeking in the log over and over. And then he actually got the other kids to roll with him, and they were laughing together, and I couldn't help but be simultaneously frustrated but also proud that he was reaching out.

I know I might not have looked like I knew what I was doing. And sometimes I don't. Sometimes things that would seem unacceptable I bypass for the greater meaning in the moment. Other times I know I can't let it go on because it would set a precedent. Finding that fine line is hard at times. Especially when my son hadn't listened to me for most of the afternoon, and the usual consequences weren't getting either of us anywhere.

So please know: Just as you are hopefully trying to be the best parent you can be, I am trying. My son is trying. Sometimes "trying" looks obnoxious. Sometimes he really is being obnoxious. If I have the time, maybe sometime I'll share a little bit of my son's background. But I can't have the conversation with every parent I see. So please, try to extend grace. And I will try to do the same.

Wednesday, November 14, 2012

Lights in Dark Spaces

Dan was sitting at the dining room table with the kids, teaching them about electricity. Several years ago I'd bought this toy with circuits and light bulbs and all kind of sounds, where kids can make the connections, with an adult's help, and watch what happens.

This is not my thing at all. I am so not technically oriented, so I busied myself cleaning the kitchen, my ear tuned to the other room.

"See? You can't see electricity," Dan was saying. "But you can watch what happens. You can see what it does."

I thought of tucking Ethan into bed awhile back, saying prayers. But I can't SEE God, he was saying. He sounded indignant. I didn't have a good answer. Who says parents ever have all of the answers? I looked out at a tree and watched it sway with the breeze. God is like the wind, I said. You can't see it, but see the way it moves things?

This month is Thanksgiving, and everyone's talking about gratitude. I've got about 12 Facebook friends all counting day by day, what they are thankful for. I love it. I'd much rather read that than people's political rants. I read and feel uplifted. And I remember...

November makes me think. November is Ethan's birthday, and November marked both when he started early intervention services and started school for the first time. Every time I think of both those milestones, I know.

I know that I'm not alone.

I know that God is at work even when my eyes are too blurred with tears to see and my heart is pounding too hard to hear.

Three years ago, just when I felt completely overwhelmed and discouraged, with a binder full of photocopied hand-outs on what I might possibly do to help my son's autism, just when I felt as if I had no idea how to move on or how to have hope, the most upbeat and inventive therapist arrived at our front door. She was Ethan's cheerleader; she was the question-answerer and idea-generator; she was someone to talk to when there weren't too many people to talk to, for an entire year.

And just when we were preparing to say our tearful goodbyes and move into a new phase, two years ago I was introduced to the special education teacher and speech pathologist at Ethan's school. And while it was hard to get used to sending my son somewhere and not having a therapist in my home to bounce ideas off of, they have always been there for me, and more importantly, for Ethan.

They make themselves available to meet, whenever I need to meet, even when they know sometimes it's just me needing to talk and make a connection; to ask questions; to seek clarification. They schedule the extra time for me at parent-teacher conferences because they know I need it.
They just started a social skills group for Ethan and two boys, two days a week, 20 minutes before his school day starts, in addition to his regular speech, because they know that's what these kids need.

I have had my qualms with school, and back in the day I had my qualms with some of Ethan's early therapies, but I can never deny: there have always been people placed in my path to help just when I needed it most.

So many, many people, when I stop and really look. They would make up a hundred other stories, if I chose to recount every one of them here.

Looking back, looking ahead, I can see them...those lights in dark tunnels, leading the way through; shining the path toward the next leap of faith, the next great adventure.











Monday, November 12, 2012

Playgroup Epiphany

The room was crowded, at our Monday playgroup in the school just down the street. Apparently everyone needed to get out of the house. The final tally was 18 kids, when usually 10 or 12 show up.

Being packed into a rather small room with that many kids makes Ethan a little tense (who am I kidding -- it makes ME tense!). I noticed he was a little less flexible; a little more grabby with toys. Sometimes there's such a fine line: Is he just being a kid? Is he just being a brat? Is his behavior something more, affected by issues beyond his control? Or a combination of the three?

When he walked up to a toddler playing catch with his mom, grabbed the ball, and trotted off, I knew I had to put my foot down. The mom, who I didn't know, gave me the classic look that says You Need to Control Your Child. I did, of course, but thought maybe now would be the opportunity to speak up.

"My son gets overprotective with his favorite toys sometime," I said. "He has mild autism and I think all of the people here today are stressing him out a bit." Before I had time to think of how much my words sounded like a cop-out and an excuse, another woman I'd never seen before whipped around in her chair.

"He has autism? So does my grandson," she said, with eager eyes. Apparently her "autism radar" had been up. I've done the same thing. I could empathize with the desperation in her eyes...that eager desire to make a connection. Her granddaughter sat coloring at the table beside her.

I gave her a two-sentence description of Ethan's background. Turns out, her grandson attends Ethan's school (but is in one of the elementary grades).

"Have you tried any of the special diets?" she asked intensely.

No, I told her, we hadn't gone that route.

"Does he go to a special autism doctor?"

Yes, I told her, he visits the developmental pediatrician every year.

"What about school? Does he have supports at school?"

I talked about pre-K, and his therapies, and social skills group, and who knew exactly what for next year in kindergarten.

"Are you working on things with him, like eye contact, stuff like that?"

I told her we were, that were weren't obsessive over it, not forcing it, but encouraged it as a way to relate to others.

As we talked, I grew more and more uncomfortable. I couldn't figure out why at first. Then I kept listening.

She told me her grandson was reading -- but was a whole year behind.

She told me how picky he was and how she was going to have bring him a Happy Meal at school and how someone at school got in trouble for heating up his meals and that wasn't right because he won't eat his food any other way.

She told me there was no way she could attend the support group I'd mentioned because that was his "down time" and he needed to unwind.

She told me that she'd told her grandson's parents different things they should do but they never did them and so she ends up doing them herself.

As I talked, I could sense her frustration. I also wondered: did she see her grandson as primarily a child, or a problem?

I heard myself talking, with Ethan right there, and for the first time I wondered: What if he was truly listening and truly understood? Were my words resonating with love? Or was I presenting him as a clinical situation, a diagnosis?

"He's got pretty good eye contact right now," she said after Ethan asked me a question, and I nodded. Another parent there who used to be an ABA therapist jumped in, talking about the way they used to give the kids food treats for looking them in the eye. For the first time I wondered, What is my son thinking? Did he hear her? What does he think of this?

We shuffled through leaves towards home, later. I couldn't stop thinking.

My hunch was that this woman was so desperate to talk to someone, and in the limited amount of time had no choice but to rattle off each issue her grandson was going through. I'd done the same thing in similar situations.

But I couldn't shake the feeling that we'd been talking about issues rather than children.

I couldn't help but feel I had been treating my child like a specimen.

Ethan will learn more and understand more. We need to be ready. We need to choose our words carefully. Someday, perhaps not too far in the future, he will surely be listening.







Wednesday, November 7, 2012

Adoption

I saw her smile, as she rolled the stroller into the outpatient clinic last week. Ethan was off having a social skills group. She sat down beside me, this acquaintance from church who is a speech therapist -- and has a daughter with significant special needs. We hadn't seen each other for about six months. I leaned over to say hi to S., a beautiful child with big eyes that don't see very well. She tried to lift her head up, but tired and put it back down.

S.'s story is amazing. My friend had been in the process of adopting her as an infant from Africa, when she got the word en route -- S. had contracted meningitis and was clinging to life. If she lived, she would most likely have significant medical problems. They gave my friend the opportunity to pass; to turn around; to wait for a child without so many issues. She refused. She continued her trip as planned. Weeks later, she returned home with her daughter, returned to a different journey than she'd expected.

S. is the same age as Ethan.

I felt the guilt, pressing in, as we talked. I thought about the way my son can run and jump and play. He has laser vision and hearing. We can have a conversation. For a moment, I was glad he was in the social skills group, so she wouldn't have to see...so she wouldn't feel that mom-ache.

But -- I looked at my friend and knew she saw something different when she looked at S. She hadn't given birth to her but in every way had the eyes of a mother. Those eyes pierced past the surface. Love gave her a different kind of sight.

*****

We spent Saturday afternoon at the animal shelter.

We'd had to say goodbye to our cat after 10 years the month before, and there'd never been any question we'd open our home to another. The problem was, we couldn't agree.

Anna and I preferred the littlest kitties. There was something about them that made them so darned lovable. More than that, we'd gone in there on a mission not to get a feline with any "issues," like the respiratory virus Zeke had carried.

"Look for watery eyes!" I had warned everyone. "Avoid kitties with watery eyes!"

Two minutes after we walked in, we saw him: a black five-month-old kitten with white socks. He batted his paws on the glass, wanting to play. We walked past scores of other kittens, working to engage them, but kept returning to this one. He followed our every move. He pounced and curled up against the glass as if trying to get pet.

"He is positive for calici," the adoption counselor told us, as we got to know him in one of the playrooms. Darn. That explained why he was still hanging around, not tiny-cute anymore. Another respiratory virus. We'd seen it written on his cardboard carrier box and thought it was just a nickname, not a virus. They told us it probably wouldn't be a big deal. We could treat any flare-ups with antibiotics. We could probably get other cats in the future if we wanted to.

They told us that, but I didn't want a cat with issues. Neither did Anna. She started sobbing in the corner, asking for a girl kitty, asking for the cute kitties in the back. I gingerly stuck out a hand to pet this black, lanky fur-ball, not feeling love at first sight.

Then Ethan walked over and stretched out a hand. The kitty sprawled out on the table and purred. The room went silent. Ethan slowly, gently spread out his hand and pet the kitty. His face was spread into a grin. Kitty soaked it all in, drinking the affection.

Something stung in my eyes and in the back of my throat.

I thought of this kitty who'd happened to catch a virus -- labeled and quarantined; this kitten who loved to play but had no opportunity to play with any others.

I thought of my son and what it meant to reject someone because they weren't quite what you expected, because they didn't match up to some sort of ideal.

I thought of S. and her mother racing across the ocean to save her.

I thought of my bundle of imperfection and the way despite it all, I am loved by God in a way I don't necessarily deserve.

And I knew: we were bringing him home.
 
 "This resurrection life you received from God is not a timid, grave-tending life. It’s adventurously expectant, greeting God with a childlike “What’s next, Papa?” God’s Spirit touches our spirits and confirms who we really are. We know who he is, and we know who we are: Father and children." - Romans 8:15-16, The Message


[A postscript: All it took was an hour, and Anna too was enamored; completely in love. We named him Levi.]









Sunday, November 4, 2012

The Boy Next Door

Last summer, we noticed.

Next door playthings began appearing in the backyard. Our neighbors have a middle-school aged son, so we weren't sure what was up. We know our neighbors on that side but don't talk that often -- usually just wave hello and jaunt over there on Easter for a big egg hunt they do with most of their relatives.

We saw a new play house. Then some other outdoor doors appropriate for a toddler or preschooler. Finally one day we spotted a little blonde boy out there playing. I figured maybe a relative or close friend had come to stay with them for awhile. Then one afternoon when we were both outside, our neighbors introduced us to A. -- their new son, who they'd adopted from Russia.

A. is almost a year younger than Ethan, has bright blonde hair, the kind that's almost white, and a huge grin. At first he spoke mostly Russian, but you could tell he longed to make friends with almost anyone.

"Hi!" he'd call out to us sometimes, as we walked to get into our car.

I started to think of the possibilities. How about that? A possible playmate for Ethan. To say we don't exactly live in a quiet cul-de-sac neighborhood with scores of families with young kids would be an understatement. We live on a busy street full of older homes and older people. A few families with young kids have moved nearby in recent years, and the kids have been blessed to get to play with the neighbors' great-grandkids, who live down the street, but overall, this is not a neighborhood chock full of kids.

So here was this ready-made playmate for Ethan suddenly appearing next door -- only Ethan didn't want anything to do with him.

If A. was out in the backyard, Ethan didn't notice or didn't care.

If A. called hello, I'd prompt Ethan to call hello back.

When A. started attending the same playgroup down the street with his grandmother that we attend on Monday mornings, I thought maybe we could get to know him better. A. would dutifully say hello to Ethan, who would maybe say hi and then trot off to play with other things.

Even worse, a few times A. annoyed Ethan by sitting in the spot he wanted on the rug, or getting his snack served first at the table, and then to my mortification Ethan would announce, "No! I don't want to sit next to him! I don't like him!"

Sigh.

We didn't see A. for most of the summer (I think the family goes away to Maine). The first day the playgroup started up again in September, Ethan asked if A. would be there.

Well, he's showing interest, this is new, I thought. Yet when we'd actually get to the playgroup, Ethan wanted nothing to do with him.

This went on for about six weeks. Ethan would talk about A., look to see if A. was walking to playgroup at the same time...and then promptly ignore him once we got there.

Last week I was out in the backyard catching up with my other neighbor, who'd been in Ireland for over a month and had returned not long ago. Anna was on the swing set. I turned around in mid-conversation to look for Ethan...and found him in the yard next door.

Ethan, A., and A.'s grandmother were playing tee ball. Ethan and A. were tossing the ball back and forth, running after the ball, chasing each other, laughing.

When I came over 15 minutes later they were still playing. Ethan didn't want to leave.

The next day when the kids went out to play, Ethan saw A. next door and promptly headed over there. We now have a problem we have rarely, if ever had -- how to stop our child from being too social. When I told him it was dinner time, he wailed, "But I like playing with him!"

Fourteen months later, Ethan discovered the little boy next door.

Progress around here, as it relates to the social side of things, moves at a tortoise pace. That makes it no less sweeter. Perhaps that makes it even more sweet.














Thursday, November 1, 2012

The Dark and the Light

I'll be honest.

I was going to write whine about Ethan's IEP meeting. I was going to write about yes, the good reports and news on his progress but also my frustrations with the principal, with assumptions made and key staff members being absent, about people insisting they know what is right for my son 10 months from now and wanting to force decisions.

I was going to, but I can't.

I can't watch neighborhoods go up in flames on television, watch houses wash away and the tiniest of newborns be evacuated from a flooded hospital and then gush about injustice here. Not today, when I'm grateful the lights are back on. I wish I could I take on this attitude each and every day, but it's amazing the way human nature creeps in on all of us and life sinks back to ordinary and full of things to complain about once again.

Our storm story is so mundane, here in CT far from the coast and farther from the more devastated areas in New York and New Jersey.

Monday the kids woke up to no school and gray skies. Our flashlights, candles and radio sat waiting on the dining room table. We weren't going to be caught unprepared this time around. Like countless other parents, I tried to think of how to keep the kids occupied. We decided on a tournament of board games: Candy Land, Chutes & Ladder, Go Fish, and so on. This would have worked swimmingly, except for the fact that somehow, I kept winning (I'm one of those types that can't bring myself to cheat and "let" the kids win). This resulted in much weeping and gnashing of teeth from both kiddos...but it did take about three hours. By the end, we were going to play Hi-Ho Cheerio all night if we had to in order for Ethan to win one stinking game (those darned birds and dogs!).

By the afternoon, the wind was picking up and the sleeping bags in the living room were spread out on the floor. Before the wind got too bad, the kids wanted a chance to do this:



For awhile we just lay on sleeping bags, reading books and watching the wind whip the trees.

video


I would've loved to stay there forever, cuddling, resting, watching. Some day they won't be so little. Some day they won't want to snuggle.



By the time darkness fell I thought we'd missed the worst of the storm. I could hear the wind howling, but apparently Hurricane Sandy had already made landfall. Typical storms usually begin to fall apart at that point...which is why I was surprised when, two hours later, the wind was still roaring and the lights went out.

There we were, exactly one year later, experiencing another freak storm, sitting without power. Was this possible? The sense of deja vu was incredible. There was the lantern and Anna whimpering, afraid of the dark. Branches were whapping around, some hitting the house and roof. The next morning there was the radio and the candles and eating Pop Tarts and driving to get some Dunkin' Donuts coffee. Combine that with checking the power company outage map and getting excited to see power trucks on our street, and I felt as if we'd all be sucked into some kind of time warp.

But here's the thing -- sometimes a situation can look, feel, taste the same but not be the same. Every indication can be that the worst is going to happen, everything can appear as if history is repeating itself, but then something can happen that may delightfully surprise you.

When Ethan got his diagnosis, I could only think of it in relation to my brother. I heard a diagnosis of autism and saw my childhood repeating itself. Everything seemed to be going the very way I had lived it and feared it. To see past that and trust in a future unseen seemed near impossible. Yet here we are, three years later now. The only thing that's really the same is the words on the paper. We are taking a very different path.

Last night by 6 p.m. a man was outside of our window working on the pole. A half-hour later, our lights were back on. We spent less than a day in darkness. Our epic power outage repeat fears were unfounded.

It's hard to be too gleeful when there are many people out there still without lights or heat; many who have experienced loss. But I think I can't turn my back on the message meant for me, this time around. Life is a glorious, heartbreaking, breathtaking, gut-wrenching adventure. What it's not is predictable, or somehow controlled through fears or expectations (fearing the worst doesn't somehow make you immune from the worst...but quite likely may make you miserable).

As I lay in bed last night, content that things were back the way they should be in our little neighborhood, I couldn't help but feel suddenly immensely grateful we had gone through our seven days in the dark last year. I had hated it, but now as I lay there under the blankets appreciating the warmth of shelter and light and prayed for the families to our south, I knew. I knew that I wouldn't have felt it, as I prayed, if I hadn't lived it, or lived something a little bit like it.

And so I thanked God for the light, and I thanked God for the darkness.

Then I slept.


video

That night the full moon came out and the clouds were racing over it like crazy. Part of our street had power, and the rest did not. Light, and dark.