Wednesday, October 26, 2011

The Art of Casting

The other day we attended Ethan's annual IEP meeting. This was our second and so many things had changed.

I no longer viewed the principal as the "ice princess" but rather as a woman with a strong personality who truly has our kids' best interests at heart.

The faces around the room were much more familiar, and they were all saying good things about my son.

Instead of politely arguing about placement in the ABA classroom, we were talking about Ethan's full integration in the regular pre-K class...his switching from a dedicated one-on-one to sharing an aide...the way he's a "role model" for some of the other kids with autism.

I went home feeling vastly relieved and grateful. Honestly, I was walking on the clouds for a little while. And then I decided to zero in on the one area in which he most struggles and has always struggled, the same area in which nearly every person on the spectrum struggles: social interaction and play.

Don't get me wrong. I didn't sink into a pity party or depression after an overwhelmingly positive review with his teachers and therapists. I wasn't shocked to hear he had NEVER initiated play with a classmate, that he struggles to stick with play activities, that he has to be encouraged and prompted. These things were expected. These things couldn't really take away from everything good about the meeting --

Except they did. Because within eight hours the hamster wheel was spinning in my head. If he's made so much improvement in other areas, if he's at or above age level academically, if his physical therapist is blown away by his progress over the summer, if he's shown so much improvement in his other therapies, then there must be a way to find exactly how to help him interact. To initiate. To overcome the obstacles he has in play.

I got on the internet. I posted on a few forums. I pondered social skills groups vs. gymnastics vs. play groups at home vs. consulting with a Floortime expert who could really tell me what to do. I questioned again whether it was better for Ethan to struggle with typical peers who would be better models or do an autism-specific group where he'd be more comfortable but possibly not get the interaction he needs. I thought and mulled and talked everything over with Dan who, as he usually does, summed it all up in his matter-of-fact kind of way:

"Deb. This is something he's always going to struggle with. That's what autism is."

I half-heard him. I knew he was right but didn't want to let go of my really deep thoughts.

In the morning, I was listening to a Christian speaker talk about the way we try to reason our way through everything. We forget about casting our cares to the One who can hold them all, to the one who holds all of the answers.

"There are times we have to look at a situation is realize, 'It is what it is,'" she said. "You can't always change it, but God gives you the ability to go through it."

On the way to do laundry in the basement, I plopped myself down for a moment on the dusty stairs. I put my head in my hands and felt myself wrestle with the burden of getting everything just right. I wondered why autism had to be such a mystery for so many families. I wondered how any of us could be thankful for having to admit we don't have all the answers.

Then I decided, once more, stop scouring the internet. To maybe just try a class and (gasp!) stop if it wasn't a right fit for Ethan. To let go of the analyzing. Again. To remember I'm not racing against time; that God has all the time in the world.

Twenty minutes later I was at school picking up Ethan.

"You'll never guess what Ethan did today!" announced one of his teachers joyfully. "He initiated play with one of his friends."

He asked a boy if he wanted to play with blocks. For the first.time.ever.

I know things don't always happen this way. I know we don't always get an immediate sign when we make a decision. But today, I felt as if Someone was up there giving me a wink.

I can't say much about the art of casting my care. I certainly don't have this down pat. But what I do know is that it is indeed a lot like fishing with a line. You end up casting again and again and again. And it's only when you leave that hook still in the water, rather than reeling it back to you, that you find what you were looking for.

Monday, October 24, 2011

Hide and Seek

The kids and are outside on an unseasonably warm afternoon. The sky is awash with cotton candy clouds and the towering maple in our front yard had turned golden. While the air is warm, the wind keeps whipping everything around, churning leaves into the air around us. The sweet, earthy scent of the dying leaves wafts by as the kids and I play hide and seek, and the game and the air and the leaves awakene a deliciously wonderful memory.

I have talked about growing up in Gilbertville, the town with more bars than stores. I've at times referenced certain parts of growing up that were difficult and painful (as with most people). But that's not the whole story.

Some parts of my childhood were absolutely perfect.

I grew up in the eighties, when packs of kids still roamed around small-town neighborhoods, when kids didn't do "play dates" but just went out in the backyard or to the friend across the street's backyard and played for hours. We built forts. We rode bikes without helmets down dirt paths. We found an old creepy rusted car in the woods. We played house under the cluster of crab apple trees and created elaborate lands for our Matchbox cars and Star Wars figurines that wound through our driveways...over stone walls...around flower gardens.

We were kids. We played.

We loved to play Hide and Seek. A big group of us would gather up in my grandmother's driveway, which was at the end of our dead end street. There would be heated arguments about who had to be "It" first, usually decided by (anyone remember this?) everyone putting their fists in the circle while someone started:

Bubble gum, bubble gum in a dish, how many pieces do you wish?

Then we'd hide. We'd hide in the garage and in the woods and behind the lilac bushes and behind the neighbors' cars and up in trees and under the steps. We'd hide while the sun was setting, praying our parents wouldn't call us in before we were found. We'd hide, chests heaving with anticipation, trying to quiet our breaths, and hear a scream and the pounding of footsteps as someone was discovered and tried to make a mad dash to home base or whatever we called it before they were tagged. We hid and in that moment there was nothing but our breath and pounding heart and the straining of our ears to hear if Someone was coming to get us.

We were absolutely, completely present in the moment. We weren't thinking about what happened at school that day or what would happen tomorrow. And when whoever was It jumped out from somewhere and spotted us and we had that feeling of our stomach jumping into our throat as we tried to get away, we ran and we laughed and we laughed and we ran and everything in that crazy moment was completely wonderful.

This is how I want to play today, decades later. This is how I want to live. Sometimes days go by, and they weren't even horrible days, yet I realize I barely laughed. Sometimes I catch myself saying "Hurry up," again and again to the kids, as if all we are ever doing is rushing to get somewhere. Sometimes when I work on the Floortime stuff with Ethan every fiber of my being just doesn't want to wants to read a magazine or do the bills or go online or wipe crumbs off the table. Sometimes even when I am playing I am thinking of what the teacher said or the doctor's appointment to schedule or what to make for dinner.

But then something taps on my shoulder and gently reminds me. The wind whips my hair into my mouth and Ethan announces he's going to count. I race up the hill and behind a tree and remember every good thing there is about being a kid, and that we shouldn't pack those things away.

Maybe, in fact, we need those things now more than ever.

Monday, October 17, 2011

Why I Say Something

I come across this discussion often in "autism world," which for me right now usually is online rather than with other parents I know (still working on that): Parents often debate whether or not they should immediately disclose that their child has autism, i.e. when they're at a public place like a park or library. A common argument is often No, because I shouldn't have to apologize/explain/make excuses for my child.

I get this. I get that we should not walk around immediately taking everyone else's opinion into account and feeling as if we have to divulge our child's "issues" with strangers in order to be socially acceptable. I get that sometimes we just don't want to get into the discussion, that sometimes people just need to deal with it and accept our kids at face value.

So far for me, though, that approach just doesn't work. Ethan is a kid who can just "blend in" if he's having a quick encounter with someone at the store or playing on the playground. But any time we're doing something that involves a bit more conversation; play time; one-on-one with another person or adult, like the hairdresser or the mom and her son at the Barnes & Noble train table or the play group at the library, I find myself getting into the autism discussion. In the process, I've realized two things:

1) People need to see what autism looks like and are often surprised at what autism looks like. They need to broaden their picture of what autism is, so they don't just think "Rain Main" or someone flapping their hands or banging their head on the floor. They need (and I need) to see as many autisms as possible to truly understand that saying about there being "No one autism."

2) Everyone seems to have an autism or special needs story. And once I open up about Ethan, their story inevitably comes pouring out.

When Ethan and I are out and about, and he's around other kids and I disclose that he's on the spectrum to other moms, I inevitably get one of two reactions. Either they say, "Really? I wouldn't have known" or they kind of nod and smile as if to acknowledge, "Oh! I knew something was off but that helps explain it better."

If my son is having a meltdown about something relatively inconsequential, am I sharing his background because I just don't want people to think he's a brat? Is it self-preservation? Perhaps, but I'm also helping them understand and see in the flesh that transitions are hard for people with ASD, or that they sometimes have fixations on things we might not understand. If my son is announcing, "That other kid needs to go away!" while he's playing at the train table, do I explain about autism because I don't want the other mom to think he's rude or that I blithely allow him to pronounce rude statements that might hurt another child's feelings? I suppose...but I also can take the moment to explain that he gets anxious around other kids and actually wants to play, but needs some time to warm up to the idea.

Our interactions leave people knowing just a little bit more about autism than they did before. That has to be a good thing.

As for the stories. I've been amazed at the stories. I tell the hairdresser about my son and suddenly she's telling me about her son, who is hearing impaired. I ask the librarian for some research info for Ethan's IEP and then learn her own child has Asperger's. There was the mom in Barnes & Noble who shared about her son's feeding issues and how she worried about him being small for his age...the mom in McDonalds who shared about her sister and nephew with special needs...the mom at the park and mom at the party who have brothers with autism.

Everyone has a story. Somehow, when I open my mouth and decide to share a bit of ours, they feel free to do the same. In the process, I'm reminded that there are so many of us out there facing challenges, that there are a million stories behind the quick smiles and surface conversations we exchange.

This is why I say something.

Friday, October 14, 2011

She Couldn't Have Known

She couldn't have known, after our ten-second exchange, that her comment would leave me with tears welling in my eyes. Good tears. Happy tears.

There's no way this mom of one of Ethan's preschool classmates could have known.

As I've mentioned before, Ethan is in a blended pre-K class of three-year-olds, some typical, some with autism, some with other special needs. He's actually surprisingly good about filling me in on little tidbits about his day. I'll hear about how he went to the gym. I'll hear about snack or the songs they sang. What's harder to decipher is how much he actually relates to his classmates.

Some days he'll say he doesn't want to go to school because they're "scary." Other times he'll mention knocking down blocks with a certain kid, or playing trains with another child. When we walk in each morning, though, he freezes when we see the other kids waiting in the hallway with their teacher. He doesn't exactly greet them with a smile and a hello. "Hi Ethan!" one boy I'll call B. called to him the other morning. Ethan just looked and stared.

Which is why I was so surprised this morning when that same little boy's mother walked by Ethan and I as we were approaching the school entrance.

"I have to tell you," she said in a rush. "My son was in there crying because he was sad thinking Ethan wasn't going to be at school today."

Then she was off to her car and I was off to drop off Ethan. He still didn't look his teacher in the eye or say hello. But all I could think about was this: for the first time, someone other than family or his therapists missed Ethan; was asking for Ethan; wanted Ethan's company. Yeah, it was a three-year-old, and maybe he was just cranky.

But maybe, just maybe, another child considered Ethan...a friend.

That's why for a moment my eyes clouded with tears, that quickly transformed into a smile as I drove away in the rain.

Wednesday, October 12, 2011

Notes from the Land of Cul-de-Sacs

Not long ago I read a story about a woman who was a teenager on 9/11, the day the planes hit the Twin Towers. Her dad worked in one of the towers and the entire family thought he was there that morning when in fact he had overslept. She talked about her relief, joy and guilt after learning he was alive, and reflecting on the years that followed she said something like, "It's not like we never fought again. As time went by I found that I still got mad at him sometimes over little things."

This comforts me. Her words soothe me because, although I am most definitely overwhelmed with gratitude at Ethan's progress and that he can talk and converse with me, and how I feel I can never take the little things for granted, there are times I just have had enough. I need a time out from the repetition, the interruptions, the obsessions. And while I am well aware and my heart hurts for those parents of children who are non-verbal, I think this is okay. I think it's all right to be human.

That being said, this is a sample conversation from a typical car ride, with me at the wheel and Anna and Ethan in the back seat:

Anna: So then my teacher told us to-
Ethan: Mom, what does that sign say?
Anna: -we had to do our writing journals-
Ethan: Mom, what does it SAY??
Me: Speed Limit 35, Ethan
Anna: so I wrote about butterflies and
Ethan: What does THAT sign say?
Anna: how pretty they are and then
Ethan: Mooom? Does it say "No outlet?"
Anna: MOM!! He keeps interrupting me!!
Me: Ethan, it says "Children Ahead."
Anna: So then I was writing-
Ethan: How do you spell "Children?"
Anna: MOOOM!!

I sometimes feel as if I am a two-headed creature, carrying on conversations out of both sides of my mouth.

When I'm alone with Ethan, on the way to and from school, right now it's all about the signs and cul-de-sacs.

We talk about the signs leading up to the school. "No parking!" Ethan announces. If a car is in the spot, he yells, "They broke the rules!" He laments the missing F on the "Fire Lane" sign. He wants to touch the signs. He wants me to read the "Turn Cell Phones Off" sign at the school's front entrance. Or spell it. Or both.

Going home, he looks judiciously for yellow "No outlet" signs posted on top of the green street signs. "There's one!" he yells with joy. "Can we go down there?"

I am (proud?) to say we have now explored nearly all of the dead ends on our side of town. We've driven down streets I never would have considered exploring. None of them are all that interesting, but that's beside the point. We've determined together that Ethan likes cul-de-sacs but not dead-ends (which he calls "scary"). And before you say "Cul-de-sacs ARE dead ends," please note that in our world, cul-de-sacs are fun merry-go-rounds we can turn around in, while dead ends just stop abruptly.

All of this cul-de-sac talk actually had me pondering why, in Massachusetts (where I grew up) the street signs read "Dead End," while in Connecticut they say "No Outlet," as if they are trying to sound more civilized and less blunt here. Yes, these are the things you think about when you are winding around a cul-de-sac while your child yells "Wheeeee!" I also remembered that I actually grew up on a dead end street. Not a cul-de-sac, mind you. This was working class Gilbertville, Mass. My dead end concluded at the trash cans for my grandmother's apartment building just up the street from our own.

See, I started writing this grumpily, but now I'm smiling. Perhaps it's because the kids are in bed and all street conversation has ceased for the night. Or maybe because hey, at least we're conversing about something. Ethan IS letting me into his world. If we could just crack it open a little wider, that'd be great. If we could do a little more relating and a little less spelling, that'd be nice, too. But then again, this IS how he is relating. So for now I'll go with the flow, and when I need to, the Excederin, at the end of an especially long day of sign identification, spelling bee training, and dead end exploring.

Sunday, October 9, 2011

Brown's Harvest - A Progression

Every year in early October, we go to a "pumpkin patch" in town that's not far from the airport. It's your typical fall-in-New-England place to visit, with a little corn maze and playground, hay bales to jump off, an ancient fire truck to climb on, hay rides, cider donuts to munch, and of course, pumpkins (and mums) for sale.

The first time Ethan came along, he was 10 months old. He couldn't do much besides stand in the Little Tikes play house and throw hay around.

The second time, Ethan was 22 months old and we had just received his autism diagnosis the week before. Ethan didn't want to do much. He sat most of the time in one of the wagons they provide for hauling around flowers and pumpkins, then went on the slide again and again.

The third year, Ethan was almost three. The afternoon sun was in everyone's eyes and rather irritating. For him, the sun was so distracting he found it hard to play at all. We didn't stay long.

The other day we returned to Brown's Harvest once again. Ethan will be four years old in a few months. For some reason he cried that the place was "scary" when we pulled into the parking lot -- and then proceeded to have the best.time.ever.

He "drove" the old firetruck. He and Anna soared off the hay bales, landing with comforting thumps in the hay pile below. He ran through the corn maze with glee. And the best part? The absolutely beautifully simple but amazing part, was that for the first time his visit to Brown's Harvest involved other kids. They began to run with him and Anna through the maze. They played hide and seek. This other little boy who was 5 became their "friend" for the afternoon. He followed the kids to the hay and the fire truck. He pulled Anna, then Ethan around in the wagon and then Anna pulled the two boys. At one point I heard Ethan calling to him, "Boy! Come down the slide!"

Was Ethan actually playing alongside kids for much of the time rather than with them? Absolutely. Was he annoying them with his obsession with the "dead ends" in the maze? No doubt. Did he have trouble actually answering the kids' questions unless they were short and simple? Yes. But this year for the first time ever, Ethan's fun involved other people.

There are people who are frustrated when, after years of therapy, their kids have come so far but are still so, well, autistic. There are moments I feel that frustration, too (so he's talking non-stop now but why so often does it have to be asking me to spell things or read signs?). But to me the most difficult aspect of autism, the most painful part to witness as a parent, is not the quirkiness or repetition but the trouble people with ASD have making connections with other people.

To see my son being able to do that, on his own level, but at not even four years old, makes my heart soar.

...kind of like Anna, off a hay bale...

Thursday, October 6, 2011

Why Questions

Anna and Ethan before the Harvest Party at Anna's school, October 2008

This morning I caught Ethan standing on top of the back of the couch, trying to make his "snake" string climb up one of our surround-sound speakers.

He has two toy guns now that he calls "shoot guns" and likes to aim them at us (in good fun, not maliciously) and make shooting sounds.

We're going to look for Halloween costumes in a couple of days, and all I can think is, "If only my parenting self five years ago could see me now."

I was never one of those parents who devoured every article in Parents magazine and every page of the What To Expect books, who made my own baby food and bought only the five-stars-for-safety-rated car seat. But I tried pretty darned hard. More than that, when Anna was a baby, toddler, and preschooler, I fretted about any and all things parenting-related.

How could we get her to eat more?

Should we let her play with Barbies?

Should I be worried that she doesn't know her letters yet?

As a Christian parent, more worries came on thick:
Should we send her to public or Christian school?
Do we do the Santa thing?

What about Halloween?

That last one really got me. Apparently since I didn't have anything more pressing to worry about, I actually used to toss and turn in bed at night, pondering the Halloween question. Halloween wasn't a big deal as a kid. We dressed up and went to the town party. We were Christians and didn't celebrate gory stuff, but we didn't go around denouncing the holiday, either. But then there I was, 30 years old in a church where the pastor discouraged celebrating the holiday, and I didn't completely agree, and I just didn't know what to do with that.

It sounds so silly now, but really the underlying issue was my confidence as a parent, and the answer to these questions: What was driving my decisions? Why did I believe what I believed?

For the longest time I never stopped to answer those questions. Then autism came along, and most of the things I had previously worried about dissipated. The questions that had previously seemed of such consequence now seemed nearly insignificant. Do I really care, for example, if my child is playing with guns, as long as he is actually playing, and attempting to delve into pretend play? My concerns about not being too rough on furniture are outshadowed by the fact that Ethan is standing on said furniture calling, "Mom! Look at me! My snake is climbing up high." The part of me that longed to hear my son call to get my attention has trouble being bothered by the precarious and irreverent way he sometimes treats furniture (hello, one little monkey jumping on the bed).

My son has to attend a public school to receive the services he needs, and they recognize Halloween. He is learning about a seasonal custom and last year for the first time ever after knocking on the neighbor's door for candy started to ask to visit them. Halloween is a social rather than satanic experience.

Don't get me wrong: as parents we must have limits, and we must have values and standards we urge our children to follow. If Ethan gets obsessed with guns and killing people, perhaps the guns will go away. He has to know he can't jump on other people's furniture. And on Halloween my kids are not dressing up as skeletons and witches, going on zombie walks, and visiting the fortune teller on the town green.

But again, a few years of experience and an encounter with autism have shown me it's wise to question why we do the things we do.

Do we parents of ASD children choose certain therapies because "everyone else is doing it" and the pressure is great, or because we're driven by fears and the need to just do something, or because we truly believe it will best benefit our child's individual needs?

Do we allow our children to do or not do something because we hold a personal conviction about the issue or because we're afraid of being judged by other parents?

Do we bring our children up in a faith and belief system simply handed down from our own parents, or are we living out a faith birthed from of our own encounter with God, our own experience, our own convictions?

I don't always make the right decisions. Sometimes I have to go back and readjust, reevaluate. But I can't stop asking the questions. I can't stop thinking that it's just like the way we develop as kids, that area many children with autism struggle with: Asking "why" questions and beginning to answer them is a major milestone. No conviction is truly a conviction, no belief is truly a belief, if we don't know why we believe it.

Saturday, October 1, 2011

Two Conversations

I had just picked Ethan up from school and we were walking up the sidewalk on our way to the playground. We do this every sunny, relatively warm day: school, then the playground. I like to let Ethan run out some his energy.

Behind us I noticed a woman pushing a boy in one of those strollers for bigger kids who have disabilities. He didn't speak. I realized he might be in Ethan's class. One of Ethan's classmates had told her mom (a friend of mine), "We have a baby in our class. He doesn't talk." Ethan had told me the boy "sits in a stroller."

We walked, Ethan and I, and this mom behind us pushed her son.

"Can I go on the playground?" Ethan was asking, as he does every day. "I want to go down the pole!"

Behind us I heard, tenderly, "Did you have a good day at school today?" No response. "Did you go outside?" Again, no answer.

"I want to do the pole all by myself!" Ethan was exclaiming. "I want to run!" He started jogging toward the playground gate.

Behind me, this mom pushed the stroller to a stop. She opened the car door and gently began to unbuckle her son.

On the playground, Ethan was already up to the pole. "Watch me!" he shouted and he slid down. I thought about all of the times I had wished he would do more on this playground. Interact more. Say hi. Not stare through people.

I thought about how little I had ever stopped to be thankful that his little legs could run. Thankful that he had now mastered sliding down the playground pole on his own...could make a wobbly walk across the balance beam...would soon would master the mechanics of pumping on the swing.

The mom hoisted her son up and held him momentarily before placing him in his car seat. He seemed unaware. But there was something about the way his head rested on his mother's shoulder. He was soaking in the love.

While Ethan played, she buckled her boy in his seat and got behind the steering wheel. Before they drove off, I saw her put down his window, making sure he wasn't too hot. Making sure he could see outside better.

As I watched this mom I did not know, this was not a moment of be grateful you have so much when others have so little. No. I was thinking we both have so much.

As they drove away, I kept thinking about love and dependence. I kept remembering this mother's gentle touch and soft words, the love that poured out from her.

And I remembered how we are all lacking. How we all are so much more dependent, so much less in control, then we think we are. Like that eternal poem "Footprints," I thought of God carrying us in all of our weakness, with tenderness, wanting to have a conversation, even if we don't talk back.