Friday, March 29, 2013

A Note to a Stranger

Dear Mom at the Park Today:

I saw your son first. I saw him on the playground, bigger than most of the other kids, stomping up and down and flapping his hands. I saw him, and I thought I knew, but of course without knowing him I couldn't really know.

I tried to look and see who he belonged to, but there were so many kids there, due to the egg hunt. I kept having to look away to make sure I knew where my own son was. When I spotted your son again, he was off running -- not away, but separate, apart from the other kids, doing his thing, looking for peace and space in the midst of the semi-chaos.

Again I looked for you, mom. I wondered if you were part of the egg hunt, perhaps a friend of a friend, and I wondered as I always do how I could approach you if I found you. Would there be a way to talk? Would you acknowledge and be relieved to know I knew, or deeply offended if I walked up and made note of what was obviously your son's special needs and (perhaps) autism? These are the questions that so rattle me sometimes -- when or if to reach out, and if so, how?

A few minutes later, I finally spotted you over at the bridge that spans a little stream near the park's entrance. Oh Mom I Don't Know, I wish you could know that I saw you. I saw that your son had taken off his shirt and was leaping around (maybe wishing he could swim in the water?). I saw that you had another child, undoubtedly a typical one, and the way you were trying to stretch your attention between the two of them and their very different needs.

The egg hunt was slated to start in a few minutes. I had to gently urge my little guy to get off from trying to climb on the roof of the little tot playground like some of the bigger kids. I was distracted for a few more minutes, but when I looked back again, that last time...

That last time broke my heart.

I saw you over near your car, in the parking lot. And for the first time I noticed that you had Easter baskets. I don't know you and haven't ever seen you at the mom's group that was holding the egg hunt, but you were there to collect eggs...only you weren't, because you were leaving. I knew why you were leaving. In those mere seconds I flashed back to rushed moments in public places when I was a kid, trying to get away before one of Andy's meltdowns started, trying to do what we could to not make a scene. I thought of parties that ended early, get-togethers cut short.

And in those split seconds before the kids rushed to the field and made a mad dash for candy, I wanted to cry: not for my past, but because I so badly wanted to rush out there and tell you It's're not alone...someone there anything I can do? How I wanted so wanted to break any codes of etiquette and run over there and just give you a hug, look your son in the eye without shying away and pretending not to see. How I wanted to, but my kids called to me, and someone stopped to say hi, and in another moment I looked over --

And you, all of you, were gone.

Friday, March 22, 2013

Ms. B.'s Song

Our town has always been awesome about offering playgroups every weekday in each of the elementary schools for kids ages birth to 5. It's a great opportunity for parents to meet other local parents, kids to get to play plus get used to a little structure before they start school, and for both parents and their kids to be introduced to the town's schools and some of their staff.

Just five months from now, Ethan will graduate from playgroup age when he officially begins full-day kindergarten (sniff! sniff!).

Our playgroup experience started out quite rough. That first day I brought him to Ms. B's playgroup, an ABA therapist in tow, it was really just to prep him for starting school in a few months. I had to drag him in the door. He hated it. I was drenched in sweat by the end, built up from the stress of attempting to prevent an all-out meltdown. Over the next several weeks Ms. B. was endlessly patient and kind, always doing just the right thing to include Ethan without overwhelming him.

When Ethan started school, he was no longer available to attend Ms. B.'s playgroup since he was in class, but her room was just down the hall from his classroom. We often walked by and peeked in to say a quick hello.

Last year, with Ethan switching to afternoon pre-K, we branched out and tested the waters at several other town playgroups. Some were fun and others not so much. Some had their "mom cliques" already formed and it was tough to break through. At each one, Ethan did not transform and become Mr. Extrovert, but he did learn to adjust, enjoy himself in his own way, and not hide out in the hallways or smush himself against the floor with stress the way he did those first few times.

This year they've restructured the town's schools and we no longer see Ms. B. I'd heard she ran the playgroup at a nearby school on Friday mornings, one we don't usually attend due to other commitments. We decided to drop in today.

It was probably the worst of all the days to "drop in." Ms. B. had planned an Easter egg hunt and most of the parents who are regulars to the group had forgotten to bring in plastic eggs to help out -- never mind me just showing up with Ethan. The room was chaotic as people kept going in and out -- apparently some dentists were setting up a "mobile dental lab" for kids in the school for later in the day. Ms. B. seem uncharacteristically distracted, and Ethan responded to all of this by sitting down at the bead "roller coaster" toy and getting a little lost in his own world.

Then circle time came. We all sat down on the rug, and then Ms. B. started singing her song, the one I'd forgotten she starts every playgroup with, the one that goes

Open, shut them, open shut them
Give a little clap, clap, clap
And suddenly as we were singing and doing the hand motions we were no longer here in this school in the almost spring-time, but back at the other school on a dreary fall day as I begged Ethan to inch closer to the circle of kids sitting on the floor. There in a rush were my fears and frustrations and stresses and the thought of the Great Big Unknown which was school, starting for him in just a few months, and how would he ever cope?

Open, shut them, open shut them
Place them in your lap, lap, lap

Two and a half years had passed since that day. Could it really have been two and a half years? I looked down at Ethan. He was smiling and singing. He remembered this song. He never forgets a song. I looked down and saw a boy not cured, wiped away of any trace of autism, but changed. I saw less anxiety. I saw his love of music and yes, his fascination when someone turned off half the lights in the room. I saw the way he retreated with the toy earlier but also his subtle peeks at the other boy playing with Star Wars Lego guys. I saw how he didn't want to do the craft (oh, how he hates them!) but how he forced himself over to the table to paint with Ms. B. I saw the way he uses his smarts to cope in this complicated world.

Creep them crawl them, creep them, crawl them
Right up to your chin, chin, chin 
Most of all, I saw not perfection, but progress. Just like any one of us.
Open up your little mouth
But do not let them in, in, in...
I thought of the blog post I'd read the other day over at Diary of  a Mom about the mother of a sixth-grader with autism who was told, "She's not the kind of girl who will ever go to the prom. It's just not possible" and how perhaps what is more painful than any diagnosis is for the experts to become The Great Prognosticators and find it their duty to strip away hope.
I thought of our story, of how far Ethan's come and how in reality we don't know exactly where he's going. I thought of those bitter truths that there are some on the spectrum who make painfully slow progress, and that I don't know the answer to many whys and sometimes not even the answers to the hows.
I thought of how there will always be unknowns, and how Ethan will always be Ethan, and that for every struggle he has, there will be times where we are living in the now and my breath can be taken away, thinking of where we once were.

Tuesday, March 19, 2013

Love and Marriage

I noticed one of Ethan's friends looked especially dressed up for preschool not long ago.

"Oh yeah," said his mom. "He said he wanted to dress up today. I think he wants to impress someone."

Are school crushes beginning already? About that time, we noticed Ethan talking about one of the girls in his class. Would I call it a crush? I don't think so. But one time we were pretending with little people that one of them was a different girl from his class, and Ethan corrected me and made sure the toy was "E." Last week I noticed E. at a town event as she marched right up to Ethan and eagerly introduced him to several of her friends.

"Ethan's got a girlfriend!" Anna will sometimes shout at the dinner table. "Do you want to marry her?"

Ethan stares at her blankly at this question. I didn't think he'd ever paid much attention to the concept of marriage at all, until one day recently when he asked if a wedding picture of me and Dan was when we got married. I told him yes, and he asked "Why?" He asks why often about questions that don't really warrant why answers. I'm thinking it's his way of trying to glean more information, to dig deeper and try to understand things that are over his head.

Tucking Ethan into bed the other night, he announced after prayers that he wanted to hug and kiss me. As I reached down, he headed for my mouth, and I turned my face so he would get my cheek. We've talked about this before.

"I want to kiss your mouth," he said matter-of-factly. I never quite know how to really communicate about this stuff.

"You can kiss us from your family on the cheek," I said.

"Charlie's sister kissed me on the mouth!" That would be the four-year-old sibling of one of his playgroup friends at Kidspace.

"She didn't know any better," I told him warily. "Her mom told her not to when she saw her."

"When can I kiss you on the mouth?" he asked, truly bewildered.

"Kissing on the mouth is kind of for grown-ups," I replied gingerly. "Like when you grow up and really love somebody and get married."

"I will marry you when I grow up," he announced.

"You can't buddy," I said, trying to let him down lightly. "Little boys can't marry their moms."

Ethan grew quiet. In a second I made a foolish attempt to see into Ethan's future. What would be there, in terms of love and marriage? I've learned now that there is just no way of knowing. Looking ahead that far is like straining to see in a thick fog.

"Okay." Ethan pulled up the covers. "You can leave my room now." Spoken in typical Ethan fashion.

I kissed him again on the forehead, and left him to his impending dreams.

Thursday, March 14, 2013

A McRealization

Some friends were talking about one of my favorite shows, The Amazing Race, recently and one of them mentioned jokingly that she loved the show and would love to be my racing partner. I'd had this conversation before with Dan, and as much as I love to daydream, the truth is that I would not be successful racing with anyone. Do you ever see these people? They rip open the clue, breathlessly read for 10 seconds about some five-step task that involves jogging to a busy market and assembling, say, a straw hat adorned with raw fish and papayas and peddling a rickshaw with said hat on head while blowing kisses to the masses.

I'd get lost on step one.

In the mom's group I attend, whenever we do some sort of ice breaker activity that involves a game, I have to interrupt to clarify, slow down the directions, ask the leader to reiterate. I'm not stupid. But I  most certainly do not learn by simply hearing. I need to see and do, and usually more than once.

This week when Ethan came back from soccer practice (week #6!) and by jove, Dan reported that he was finally getting the instructions and following directions, it dawned on me. Poor kiddo. This might not be strictly an autism thing. His troubles with auditory processing may come in part from me.

Back in college when I was interviewing for a job as a library page, the director gave me a "test" on shelf reading. Basically, shelf reading is looking at every single book on any given shelf and making sure they are in the proper order according to the Dewey Decimal System. Of course, I'd heard of the system. I'd looked up many books on my own (especially back in those days before everyone found their information online). But in the stress of a new situation, I froze. I didn't understand exactly what he was asking me to do.

"Uh, are you a little slow?" he actually had the nerve to ask me. I reassured him that no, I wasn't slow, I just had trouble sometimes picking up something right away, but once I got it, I got it and would do the job perfectly. And I did.

Even further back: circa 1990, Allen Street McDonalds. My first job. Big hair. Big glasses. Bellbottom uniform pants we used to fold and roll tight around our ankles because no one would be caught dead looking like the 1970s.

They tried me on the cash register for the first time during a Friday lunch hour, when the big head honcho bosses from the main office happened to be visiting, with stopwatches, timing how quickly everyone up front assembled orders. Needless to say, I got demoted back to the fry station. People were constantly swirling around me, yelling, while my arms grew greasy and red from burns due to the splatters of grease coming up from the fry-o-later.

At first McDonalds was just too much of everything. Too many buttons to learn, too much beeping, too many people screaming that I'd messed up their order. I was dubbed "the dumb blonde." Even better -- they had a very special nickname for me, a name that made its way into the computer and onto the schedule that hung in the back breakroom: Dippity Do.

"Hey Dippity," a manager would call over to me. "Can you make me four large fries?" Or, "Hey Dippity, can you run this order out to the car parked at the curb?"


I look back at all of this now and have to smile. By the time I left that McDonalds nearly four years later, I was a manager. I had won crew person of the year. I was one of their best and fastest workers, the one they put on drive thru at lunch time during the Saturday rush. Sometimes for old time's sake they'd put me back on the fry station, because no one could make them faster. "Dippity" was long gone from the dot matrix schedule print-out. Rather, they begged me not to quit.

I'm not saying Ethan's going to win any awards for playing soccer. But I have to look at myself...hold in my impatience when he doesn't "get" things...think about those days crying in the stockroom because a customer had called me "stupid" for not understanding his order...

And remember that accepting our kids on some levels starts with accepting ourselves, with all our flaws and foibles.

Monday, March 11, 2013

Lessons on Belief

My mother-in-law loves butterflies, and tagging monarchs before they make their trip down to Mexico for the winter months. In the late summer and fall she often finds caterpillars and raises them until they transform into butterflies that can be tagged, let go and perhaps identified elsewhere. Last year as Anna admired a string of chrysalises waiting to hatch, her Grammy asked if she wanted to take one home and look after it until it hatched.

The chrysalis had a dark spot on its otherwise teal-colored skin. Just to warn you, she mentioned before we left. That dark spot could mean it's damaged and may not hatch.

Anna carefully hung up her chrysalis and waited patiently. Days went by. She grew impatient. Remember what Grammy said, I reminded her. There's a chance this one might not hatch.

Anna stubbornly insisted we just needed to wait. Every day she'd check. Nothing. I did notice, however, that the dark spot had expanded. Finally, days and days, approaching weeks later, we had to concede. This monarch hadn't made it.

Anna's sobs broke my heart. This girl who doesn't like to outwardly show her feelings was in hysterics for close to a half-hour. I wished there was something we'd done differently; that there was something we could do to make her feel better.

By the next morning she was fine and looking forward to possibly finding another chrysalis, and I saw in the flesh what it's like to live as an optimist.

I unfortunately was born with a glass-half-empty perspective. I can choose to change my cynical, negative attitude, but a sunny, positive disposition doesn't come naturally. I grew up with a huge dose of fear, imaginative thinking, and many close family members who favored worst-case-scenario thinking, sometimes even for fun rather than out of anxiety. If the chrysalis incident had happened to me as a child, I would have cried myself to sleep, pondered the whole thing for days, written about it, and feared ever finding a chrysalis again and having the same tragedy occur.

Thank God our kids are not always mini versions of ourselves.

Last week Anna was perusing the dollar section at Target and begged me to buy cilantro seeds that could be planted in a tiny plastic greenhouse, the plants eventually transferred outside. I balked; we'd bought these cheap seed kits from Christmas Tree Shops and barely got any plants to come up. Since it was just a buck, I relented and an hour later Anna had planted her seeds and sat watching the dirt contentedly.

I can't wait for them to come up, she kept saying. I'm going to have all of these plants and charge people for fresh-grown cilantro.

I could feel the familiar cautionary feelings coming back. Hopefully they'll come up, I kept saying. There's a chance that they might not, just to let you know. Or maybe just one will come up. That happened to me before.

Anna let the words roll off her back and kept watching the dirt. Six little days later, we saw it -- the first sprout. By the time 48 more hours had gone by, we had six or seven little plants sprouting up.

Look at them, Anna shrieked. Every new sprout brought new joy.

I watched her celebrate and wondered just what I was teaching.

I wondered if, in my sincere desire to protect her from disappointment, I was chipping away at her ability to believe, to live with hope and wonder.

I thought about all those Bible verses about child-like faith, about approaching the kingdom of heaven as a child. The more I read and learn, the less I think those verses are speaking of blind, immature faith but rather about complete dependence, about belief sinking down to the core, that all will be well.

Today I look at those little cilantro sprouts, today I think about the chrysalis, and I'm thankful that sometimes, we aren't teaching our children but learning from them.

A few weeks after we lost that first chrysalis, we brought another one home from Grammy's. The same day we had to put our dear cat Zeke to sleep, we came home and noticed it had hatched. We surrounded the new butterfly breathlessly, amazed. And then the next morning, Anna let it go.


Wednesday, March 6, 2013

Soccer and Sunset

We get to soccer early. It's the first time I've been there since week 1. Dan's been taking Ethan while I take Anna to sewing, but tonight Dan's away so here we are. Week 5.

Since almost no one is there yet and the barely-out-of-his-teens coach is standing nearby, I decide it might be a good time to have "the talk." Hi, I tell him, and then in a rush because he's distracted and more people are coming in, "I just wanted to let you know my son has mild autism. He has some trouble focusing in this gym with so much going on and you might have noticed sometimes it can be hard for him to follow directions."

"Um, yeah, okay," he tells me. "Back at the high school we used to do a PALS program that had kids like that pair um with normal...ugh, I mean, that's not a good word, regular kids, so I'm a little familiar with that."

Um. Yeah.

There are 12 four- to six-year-olds and no one else assisting with the class. They do their warm-ups. Ethan can jump up and tap his foot on the ball but keeping it between his legs and kicking it back and forth is more difficult. Still, he's trying, even if he ends up chasing the ball around the gym half the time.

Next is "freeze tag." Coach explains the rules once. He is obviously one who has not spent much time with young children. Half the kids miss what he said. Ethan is naturally one of them. But while most of the other kids at least realize they are playing some sort of game with some sort of rules, Ethan is so far out in left field he doesn't even realize they are playing a game of tag. He just thinks they're all running around, since he was looking at his watch during the 10-second game explanation. Since only about three of the twelve kids there truly "get it," Coach ends this game rather quickly.

Then it's relay time. Coach lines the kids up in two lines and tells them they need to kick the ball to the wall, bring it back, and then give the next kid in line a high-five and turn the ball over to him or her. This is where the real disaster strikes. Coach, probably thinking he's being kind and accommodating, allows Ethan to go first. This is exactly the wrong thing to do because already confused Ethan needs to watch other people play to understand how to. Ethan kicks the ball down, comes back, but misses the part about the high-fives and passing it to the next kid. I'm pretty sure he's never done any kind of relay and doesn't understand the whole going-to-the-back-of-the-line bit. Instead he tries to go again, kicking the ball with the next child in line. In fact, he tries to kick the ball away from said child, who is understandably confused and annoyed.

"No buddy, you need to be in the back of the line," Coach calls half-heartedly. Other parents in the bleachers with me snicker in a not-unkind way.

One more activity before they play an actual "game." This time he has them find a partner (Ethan surprises me by doing this no problem) and line up. He wants to teach them about hitting the ball with their heads. They are supposed to face their partner, who throws them the ball while they attempt to bounce it back. Only -- Ethan gets distracted by someone's ball rolling away and completely misses this. He's so used to Coach yelling that they can't touch the ball, that when his partner lobs the ball at him, he lets it drop and tries to kick it. I start urging him to go back and give his friend a turn, only since he didn't hear the directions, he doesn't know exactly what the partner should be getting a turn at. Sigh.

They put on jerseys now. Ethan is on the red team and (joy of joys!) while some kids are still trying to pick up the ball and throw it into the goal, or don't know which goal to shoot at, he's gotten these things down. He gets two good kicks on the ball, in the right direction, and is having a blast chasing it around with everyone else. I know why this part is easier. This is the part of class that's been the same every week. The game has rules that Dan has been able to explain, over and over. He's had five weeks to get this.

By the end the kids are all sweaty and tired, and I'm mentally worn out. Again I wonder if Ethan will be able to keep up in non-special needs sports...if this is just a matter of him learning the parameters and the rules...if there is anything we could be doing differently to help him out. What makes me a little sad and yet relieved is that he is so far from completely comprehending his environment, he doesn't even realize when he's "not getting it" or when the other kids notice.

I look straight across, out the gym windows. Anna sees it too -- the sunset is a blaze of purple and pink, out there past the squeaky floor and the basketball hoops.

I look and I know that this is a small thing, yet a big thing. It's just 10 weeks with a bunch of kindergarten-age kids, but it also provides an opportunity to see through a different lens, to see the way the typical world out there views my son. It helps me see the way his mind works. It helps me understand why he has some of the challenges he has. It's a time to simultaneously swallow the hurt and cheer with pride.

And tonight it's a time to, for a moment, look out past the shrieks in the gym and everything my son might not be able to do or not do yet, and revel for a moment, at the beauty of the sky.

Can you see it?
Can you see the sunset?
There's Ethan in the foreground...watching...

Saturday, March 2, 2013

The School Question

Dan was driving to an early meeting on Long Island the other day, which meant when I dropped Anna off at school, Ethan needed to come along. He enjoys these 7-minute trips, primarily because he usually gets to throw shoes and a coat on over his PJs at 8am and go on a "pajama ride."

I've mentioned before that Anna attends a Christian school (that is attached to the Methodist church that founded it). As Anna bounded up the steps and we were driving away, I saw Ethan noting the school logo near the front door; seeing the cross.

"Why does Anna's school have a church with it?" he asked as we neared home.

"I've told you before, Ethe -- Anna goes to a Christian school. That means they can learn about God there."

"I wish we could learn about God at my school," he said, not so much sad as jealous-sounding.

For a moment my heart was full of so much I wanted to say and things I wished and that realization once again that are times when explaining the way life is may be difficult for Ethan and for us, as he learns more and more about his and our world.

I had an "interesting" schooling that included four public schools and four Christian schools. Dan attended public schools exclusively. I have friends who homeschool or send their kids to Christian or public schools for varying reasons. I am absolutely convinced: this is a personal decision, that there are no absolute right or wrong decisions in this area, and that the right answer for any given family or any specific child in a family could be different and vary from year to year.

When Anna was little, I pushed more than Dan to have her put in Christian school but to keep our options open. So far, we've been pleased with the decision. When you add a special needs child to the mix, things get more complicated. I still don't completely understand the laws, but my basic understanding is this:
- We could put Ethan in Christian school (this is probably the first year I've been able to say he might be able to handle a typical classroom environment without extra supports, with their classes being so small). However...
- We'd have to fight to get him the extra services he needs, like speech and OT
- We'd win the fight but have to have the services provided on the school's terms, meaning, when it worked for their schedule, i.e., in the middle of the school day
- We'd be unable to provide any outside services for him right now due to our lack of good insurance coverage, and most importantly
- At this critical time for him to develop foundations for learning, he'd be taught by people with no or very limited special education/autism background.

And so today he attends public preschool, and he loves it. The thing is -- right now, we love the school situation as well.

Is it ideal? Are there things I wish they would do differently? Of course. I could say the same for Anna's school. But both Dan and I have a peace that Ethan is where he needs to be right now.

There are so many people I am glad we've met, that I know we were supposed to meet.

Ethan's growing in leaps and bounds. Recently his teacher shared an assessment that stacks up how he's doing compared to typical peers the exact same age. In all but three of 50 categories (related to social skills and communication, no big surprise) he scored within age range. In three other categories (related to pre-reading and math skills) he scored ahead of age range.

We're giving him the tools he needs right now. And honestly, I'm thankful because I'm not sure how we would afford to send both of them to a private school at the moment. As for home schooling, including Anna? I have found my kids perform much better academically when they are being taught by other people. If our homework battles are any indication, home schooling would be a nightmare. But I will never say never. Just as we always expect of our kids on the spectrum, remaining open to flexibility and change is key.

"Maybe I can go to Anna's school sometime?" Ethan asked.

"Maybe someday, Ethan," I told him. And I meant it, because who knows? I don't want to slam doors shut and lock them. I just know right now that door is not open.

"Yeah, maybe when I'm in third grade," he answered and bobbed off to the house, the issue apparently resolved.