The First Day

On the first day of school, I was thinking about the last day of school.

The last day, when I forgot we needed food for a class picnic, the kids were stressed, and Ethan wanted nothing to do with playing with a bunch of kids who to me weren't even acting like kids with autism. (You can read about this here.)

And then I thought about the encouragement I received from a fellow autism blogger. The autism blogs I've discovered online these past few years have been a treasure trove...of information, encouragement, humor, spiritual insights, and darned good writing. These fellow autism mammas get it. And that day, one in particular, Mamma Be Good, picked up my spirits with this comment:

You know what struck me? Why do we expect kids to socialize at all in a group that large with that much going on? Isn't that odd? We seem to expect our kids to do so because schools are based on an outdated idea: that people will have to work together in large-group organizations and have a lot of activity going on around (think factories). It's unreal. It's also unreal that our children aren't given individual instruction and individual attention for their strengths.

Mama (a.k.a. Brenda) was fired up, and that day I caught a little bit of her fire. My eyes were opened to this this (I'm going to say it) FACT:

In the past few decades, schools have increasingly expected more (and too much) of our kids too early.

There are myriad reasons. I think much of this links to so many children being in daycare. They start out early in a peer group. Then it's preschool, which was never a "given" before the 90s. Generation X-ers like me never heard our parents worry about "socializing us." Kindergarten was half-day. Finally, in first grade, when most of us reached about 6, schools buckled down and became like, well, real school. Before that, it was all about the play.

This is what I remember about kindergarten, circa 1980: Songs, games, nap time, recess, and learning our letters.

This is what kids in Ethan's school are doing for kindergarten: full day (starting next year), reading, memorizing sight words, and recess times that are mere blinks and you miss them.

I was contemplating all of this when we approached the school and Ethan was nervous, going in. "It's the first day of school!" his aide exclaimed. "You're not supposed to be nervous!"

Whaaaat??

I started kindergarten at 4 years and 9 months. I was almost held back because I was so shy. It took me a good year to get into my groove and settle in to the whole school thing. Anna started two mornings a week when she was 3 and it wasn't until about halfway through her kindergarten year that she felt comfortable in her school skin. And this girl is a gregarious one who doesn't have a lot of social "issues." I have friends worrying about their more introverted kids who are Ethan's age and wondering when they will kind of get on the ball with all of this social stuff.

More and more, I am thinking we have to give them time. They are individuals. Kids didn't use to be expected to start school at 3 and be comfortable with a large group of peers. Most of these children aren't behind. They're still growing.

And for those who DO have delays, particularly on the autism spectrum -- how much more valuable is this play time that is increasingly being sucked out of our classrooms? Most kids (Ethan's superstar class aside) with autism DO have problems with spontaneous play. Honest-to-goodness, individualized-to-their-strengths play, should be not just encouraged, but a priority. Instead, play for Ethan has been boiled down to schemes that must be worked on in an academic fashion, sprinkled in between circle time, crafts, and never mind three different therapies.

I'm not putting the honus back on the school. These are different times. But what I am doing is 1) making sure Ethan has plenty of this type of play at home and 2) making a conscious effort to filter the reports I hear back from school. Yes, Ethan is not a typical kid when it comes to interacting with his peers. But he's also not even 4. He just had a wonderful summer with his family in which he wanted to spend most of his waking hours with us, just hanging out. If he's not ready to bond with a bunch of kids over the water table just yet, I am going to cut him some slack. When I was his age I was home with my mom. He doesn't need a backpack full of my unreasonable expectations.

He Loves This Thing!

I just have to give a little plug here about a great find we've made. I'm sure most parents have seen this product on the shelves, and I too had seen it around for awhile -- but was skeptical about getting one for Ethan.

I've mentioned before about Ethan's aversion for writing, holding a pen or pencil, and sitting down and coloring for any prolonged period of time. Honestly, it's something not too many boys his age are really into anyway. That has never concerned me all that much -- but in occupational therapy his therapists have really wanted him to start using a more mature grip when he does write, and also to move towards deciding which hand is dominant (we've been waffling back and forth on this one for awhile).

Enter the Leapfrog Scribble and Write. This handy thing basically instructs kids, step by step, how to draw upper and lower case letters, demonstrating first and then having the child trace the letter. There are other modes like free draw or following the lights to trace pictures of objects like a butterfly or puppy.

I thought Ethan would get lost staring at the blinking red lights, or else run in the opposite direction once he realized we were trying to coerce him into spending more time drawing. But he's ended up loving this thing!

Well, a few caveats: we did decide to cut off the string. He needed more flexibility in order to hold the pen the right way, rather than grasping with his fist. I worried of course about him then losing the pen, but the great thing is that you can actually use other objects to trace -- like an unsharpened pencil or a pen turned upside down, if you do lose it. To erase, you slide the button at the bottom and start over.

Also, in one of the modes there are fireworks that go off sometimes, and for whatever reason, that scares Ethan. So we don't do that mode (I think it's lowercase letters, which we really don't need to be working on yet).

Those issues aside, this thing is a hit! I can't tell you how much joy it brings me to see my boy tracing letters (almost exclusively using his right hand now) for 10, 15, 20 minutes, and learning how to hold his pen steady to follow the lights and draw a picture. His OTs last year were basically working on having him draw vertical lines. This mamma can't wait for her boy to show them what he can do now.

A Momentary Lapse

We were at Anna's school for "Back to School Night" tonight (she attends a private Christian school just down the road from our house). Ironic, since school doesn't start until Monday -- actually, midway through the event we learned it will start Tuesday due to Hurricane Irene.

I knew we were in for trouble when they announced that rather than the kids going straight to their classrooms this year with their supplies, there was going to be an informational meeting in the gym. We had Ethan with us. He doesn't mind sitting for extended periods of time when music is involved. Listening to the school headmaster talk for an hour (hour!) is another matter.

Dan decided to take him out of the room to wander the halls. Then we switched and I gave Ethan a snack. By the time they dismissed the hoard of kids and parents to the classrooms, his tolerance meter was on low.

He didn't want to walk into the classroom. I thought it'd be okay to let him play with a car in the hallway, but then he proceeded to lie down on the floor with the car, blocking people's way. He didn't want to move. Dan thought we should make him go in the classroom. I disagreed. Somehow we had a silent argument amongst the flurry of parents, kids, siblings, new second grade teacher, and bags of school supplies.

I wanted to do the right thing for my son. I wanted to make sure I was paying attention to my daughter. I wanted to meet the teacher. I wanted to not argue with my husband in front of everyone. I wanted the stupid poison ivy reaction in the midst of all this that I was having to go away. And yes, I wanted my son to just get in the stupid room and play inside for a second so we could just do this without extra stress.

In the car home, I realized what was really bothering me. Had Ethan not been given an autism diagnosis, this would have been the year he'd be starting school with Anna (rather than the local public school, with all of the extra services he needs). In just a few seconds, that wispy longing for that other life rose up and flooded my insides. By the time we got home, I had to sit down on the couch for a minute and just let the tears fall while Dan and Anna were putting something in the garage.

Ethan came up to me. He looked and saw me crying.

"Are you crying, Mamma?" he asked.

"Yeah," I sniffled.

"Are you scared?" he then asked.

"No, I'm not scared, I'm sad," I replied.

He didn't hear me. "What are you scared of?" he instead asked.

"No, Ethan, I'm SAD," I enunciated.

He was silent for a moment. Then he began to stroke my arm ever so gently. "It's okay," he said softly. He was repeating something I have done for him so many times before. "It's okay."

"It's okay, mamma," he kept saying softly. "Peace...peace." As I so often pray over him. A script, yes, but one so beautiful.

Peace. My son's words soaked into my heart. I looked and could only see his big eyes and hopeful smile. I couldn't be sad anymore.

There will be these moments. There will always be these moments. But tonight, I thank God He used my son to bring me back.

End of Summer Musings

We have had a fabulous summer. Can I say that again? Fabulous. If only I could really articulate how wonderful it's been. On the surface, you could say my fun with the kids sprang from the fact that this year we were free from the burden of early intervention and outpatient appointments. Yes, we took the summer completely off. Also, the kids are at great ages for doing stuff and doing stuff together. Two summers ago, pre-autism diagnosis and pre-therapy, they were 5 and 1 1/2. We spent a lot of time in our backyard.

So all of that is part of the story, but only a small part. What's been more beautiful is watching Ethan blossom:

- In language, which, while still not at age-level, has become downright conversational
- In play with his sister, which has shot up to new heights (every morning he wants to look for her and wake her up first thing)
- In creativity and originality in play (this is just sprouting up; the earliest signs -- but now I KNOW it's in there)
- In his emotional state, which is more calm with family (he wants to just hang out and "chill" with us) and less anxious with others (he still stresses and this prevents him from interacting for sure, but after time he usually recovers and makes at least small attempts to participate).

So while yes we've enjoyed the zoo and the amusement park and the beach and Maine and Story Land and picking blueberries and all of that, what has been most sweet of all is watching this boy bloom.

This gets my wheels turning. One week to go until school starts. I wonder: why has he done so well away from the place that's supposed to be "helping" him? Is it a coincidence -- was this just his time to make some developmental leaps? Or is school actually hindering him? If so, why? And what can I do to help five days from now, when the stresses and obligations are placed back on him? How can I get his teachers to see the boy I've seen for the past few months?

Beyond that, how can I remember to remember that this is a marathon, not a sprint, when my joy at the strides he's made threatens to unravel when I see him with typical peers?

How do I keep my eyes not on "curing" my boy but helping him reach his full potential? How do I avoid the pitfalls that will prevent me from being the best parent I can be?

I can't do this on my own. His grace is sufficient for me.

School is all about learning, all right. For parents, for me, it's about learning to let go. Learning to trust. Learning to look up and learning to see with my heart. And remembering, like my son, I still have so very much to learn.

Hoses and Mazes

Ladies and gentlemen, I think we may have moved beyond Ethan's fascination with doors.

As a little refresher, for the past two years or so Ethan's big thing whenever he was stressed or bored, particularly when we were visiting someone's house, was to play with their doors. He loved (and still does, to some extent) screen doors, sliding doors, garage doors, any old door.

For the longest time, I wondered how to pry him away from the habit. Load him up with sensory activities, like carrying around a weighted backpack or giving him a massage or back pats, one therapist suggested. Give him a puzzle with doors or a book with little doors to open, another said. These people of course were never around when the door obsession hit. They didn't understand, really, what Ethan once expressed quite succinctly about four months ago: "I NEED the doors!"

After awhile I relinquished my need to quell the door habit completely. I told myself it was a habit not unlike my biting my fingernails when I'm bored, nervous, or sometimes not even thinking about what I'm doing. We worked on diminishing the door obsession, playing along with the door, playfully distracting, lots of Floortime-type stuff. And now, after two years, the love for doors is fading.

But, this being autism, after all, Ethan has a new object of affection. Or several. For this we can thank the sunflower maze and Jesse Bear.

Ethan has always loved hoses and water. This summer he and Anna have taken a good amount of time exploring the different sprayer settings on our hose in the backyard. In case you're wondering, there's Mist, Shower, Jet and Center, to name a few. But when we found the book "Better Not Get Wet, Jesse Bear," Ethan's hose adoration ratcheted up to a new level. In this book our beloved Jesse Bear continually gets into all kinds of escapades that involve getting wet, to his parents' chagrin. Several of these involve a garden hose. Ethan flips through the pages of this book for extended periods of time. "Is it on Mist?" he'll ask me, staring at the page where Jesse Bear sprays the hose up into the air to make a "sprinkle tower."

"Nah, I think it's on Center," I tell him. These are the types of conversations that seem perfectly normal in our ASD world.

We went to a huge 1st birthday bash for our friends' son last month. A year ago, Ethan would have spent an inordinate amount of time playing with the nearest available door. This time, he was tracing the hose path in the front yard until (joy!) he found it hooked into a spray attachment just like ours.

"That's Mist!" he exclaimed happily, pointing to the correct word. Will my boy be the first ever to learn to read off our backyard garden hose? (Note: He's not there yet. Later he read "J-E-T! That's Mist!").

Speaking of paths and garden hoses leads to Ethan's other recent affinity. Paths and mazes. He loves to curve the length of our hose into different paths along the grass and traverse them with deep concentration. "Yeah! We made it!" he'll sometimes say when he reaches the end.

When he does this I wonder if it's wishful thinking on his part, that he is recalling what was supposed to happen when we traveled to the sunflower maze at a nearby orchard a few weeks' back. Mamma didn't make it to the end. We had to be escorted out by one of the orchard workers.

Ethan loves winding around paths. Last year when we went to one of the largest corn mazes in New England, he had a blast. On our sunflower excursion he got right back into the groove, taking pride in choosing right or left turns, and learning a new term: Dead End. We reinforced that one often on our sorry little journey.

Now Ethan is quite interested in not just getting from Point A to Point B but also about any "dead ends" encountered along the way. He will walk through the house and get to, say, the far side of the living room wall. "Is this a dead end?" he'll ask. I've contemplated trying to explain No, not exactly, because you can still turn to the left or right; not like the dead ends in the maze, but know these kinds of nuances will go over his head. "Yes," I usually answer with gusto.

Our annual Labor Day trip to the corn maze is fast approaching. I have the feeling we're going to be talking quite a bit more about mazes and dead ends.

So we have moved beyond doors to Ethan tracing the paths of hoses (and indoors -- did I mention? -- light cords). Sometimes he pretends (PRETENDS!) he's going down a road or even is riding a roller coaster.

The whole thing is of course "quirky" but makes me smile. "You know," Dan said to me the other day, "I can remember doing the same kind of thing when I was a kid."

Maybe we're all a bit quirky. Never mind maybe. That's why I use to hear songs in the rhythms of the windshield wipers, or used a ball of yarn to tie my room into a giant spider web. Dan likes to pick up a stray sock on the floor using his toes -- and apparently, like his son, used to enjoy to tracing the winding green paths of his Dad's garden hose.

The Evolution of the Rocket

The idea came at the worst of times, one of those moments in the hobby store when the life we thought we'd have flashed in front of us. There were model rockets everywhere, and Dan was reminiscing about childhood days spent meticulously building them with his dad, then setting them off.

That Saturday afternoon a few months ago Ethan decided to throw a tantrum in the store because I made him leave the marble toy. He cared nothing about the rockets. The look in Dan's eyes told me he was wondering if Ethan ever would.

I didn't get the rocket thing at first. This was not something we ever did when I was a kid, not something my dad and brother ever did together. But when I stepped back and envisioned my dad and Nate tossing a ball around and talking on a lazy Sunday afternoon, I got a better idea. Guys don't spill out their guts. They do stuff together. Jocks play ball. Some guys build rockets. It's not so much about the activity as the act of relating to each other, of sharing a moment.

That afternoon when we pulled Ethan out of the store screaming, tears were prickling in my eyes. I could only think of dreams dashed.

About two months later, something inspired Dan to head back to the hobby store after church. "I want to get a rocket," he told me pointedly. "Anna and I can work on it."

So that afternoon, Dan and Anna sat in the dining room and constructed a rocket. I could hear their hushed, focused conversation and saw Anna's pride when the project was complete. She couldn't wait to set it off.

Launch #1
Fast-forward a few days. We headed to a field, the widest wide-open space we could find, to set off the rocket. Little did we realize the field was more like a marsh with three-foot-tall grasses, ticks, and pricker bushes. We waded out into all of this like crazy people (Ethan almost lost his shoes at one point). Then we held our breaths, I pointed my camera to capture the launch, and all hell broke loose.

Anna hated the whoosh! of the rocket launching skyward. So did Ethan. She started screaming that the rocket was going to fall on us. Ethan started crying to go back to the car. Dan and I didn't know whether to laugh or cry. We searched for ticks before piling sweatily back into the car.

Launch #2
While Anna was away with the grandparents, we decided to launch the rocket again in the field behind our house. Ethan was still quite opposed to the rocket idea. In fact, he began to panic as soon as he saw the rocket. The only way to get him through the experience was to sit about 50 feet away and hold my hands over his ears. "Is it done? Is it done?" he kept asking hopefully, as soon as the rocket came down. At the same time, I'd seen a gleam of excitement in his eyes as the rocket had lifted off toward the clouds.

Launch #3
One evening after Anna returned, we headed to a field a few towns away to try to rocket again. Sunset was approaching and for a moment I just lay with the kids in the grass, gazing up at the clouds, breathing in the bigness of the sky. This time I knew to position both kids far from the rocket. Ethan knew my hands would help buffer the sound. Anna knew the rocket wasn't going to fall and conk her on the head. "Wow!" both kids watched the lift-off with amazement. We soon realized we'd lost the rocket, and had fun driving around a neighborhood on a fruitless search for it. Anna wanted a new rocket, right away. The next morning, I heard Ethan in his room, shouting, "Three...two...one...blastoff!" Suddenly he was interested in space shuttle launches on You Tube. And an astronaut book he'd never once glanced at.

Launch #4
Dan and Anna picked out a new rocket, the "girly" penguin rocket Anna wanted. A few days after they put it together we asked some friends if they wanted to get together some evening with their kids to help set it off.

That day I had some freelance work to do and ended up catching up with everyone just after the rocket had blasted off. The kids were chattering excitedly. Ethan even made a point to tell me about the "rocket going up." Apparently it had come back down in the middle of a field of kids playing soccer. As twilight approached and summer buzzed all around us, we walked back with our friends, chatting as the kids dawdled and ran ahead and jumped over tree stumps. We went to their house and had pizza and watermelon. And when we had to leave, our kids and their kids kept yelling goodbye over and over until we were in the car and down the street.

I've been thinking about our experiences with the rocket. And the more I do, I see the way it parallels our own response to life, or our reactions to life, with a child who has special needs.

- First, the feelings of hopelessness and unrealized dreams; the sense of loss
- Then, the resolve to not give up, attempts to salvage the situation, and major setbacks and letdowns that occur in the process
- There is the realization that adjusting expectations is an absolute necessity
- Somewhere along the way, there are moments of joy when you see that while some expectations may have to be adjusted, other things you thought would be impossible, are in fact, very much possible -- but they may just happen in a different way, at a different time
- And, most importantly (at least to me right now): there is the need to not live the experience in a bubble. To reach out, to still find relationships and people to go with us on the journey, people who will celebrate and people who understand.

I thought I didn't understand rockets. I thought they were boring. I didn't realize how much the rocket was teaching me about growth; how we are all growing in this autism thing. Thanks, Dan.

A Reminder While Away

We were in the middle of our vacation last week when I realized I had forgotten.

Every year in the summer we go to our family's camp on a small lake in central Maine. It's not a cabin, mind you; in Maine they are "camps," it's been in our family literally 100 years (my great-great grandfather built the place), and it has an outhouse. That last part is what I'm subtly referring to when I tell people back here that our camp is "rustic." That and the no running water.

Seriously, though, we have fun there. We sleep on a screened porch that is dwarfed by hemlocks. At night the loons call on the lake and the sky is awash with stars. We roast marshmallows, swing, swim, hike, and generally slow down. At least a little.

After a few days there I realized I was relaxed but not vacation-relaxed (who is, really, when you have kids?). But beyond that, I was getting incredibly snappish with Dan when the kids would be outside playing. "Where's Ethan?" I kept asking. "He's not going down to the water, is he?" I could not focus until I knew EXACTLY where he was. The boy is only 3. This was absolutely common sense. But I felt common sense blended with adrenaline and a bit of panic.

Then one day down at our little beach a woman came by on a kayak. We started chatting and in moments realized she was in the camp just near us, a camp I used to play in with her kids when I was young, a woman now going through a divorce who hadn't been up there in years and years and years. She happens to work with kids with autism in the Boston school system.

"How is your mom?" she asked right away. "Does she still play the flute? And your brother with autism? She was so, so good with him, when they were up here."

Her immediate memory was one I hadn't thought about in years. Andy at the camp. My mom, as she did at home so often during those rough years, playing her flute, the melodies bringing peace to our surroundings, drifting up through the woods and to the other camps. This woman, with her teaching background, would have taken special note as she watched my brother and how my mom responded to his needs.

As we talked about the past my mind woke up. I remembered more clearly Andy bolting down the camp road and running as fast as he could. My parents jetting after him. "Where's Andy?" became the constant refrain. The time he started running toward the water. My mom yelling that he could have drowned. The day they thought he ate a poisonous mushroom. The fear. The stress. The constant being "on alert." The fact that we wanted to enjoy a vacation as a family, but there were so many screen doors he could escape from.

Suddenly, the root of my stress about Ethan being in my sight at all times was becoming more clear.

I told her about Ethan. We chatted for quite some time, and at one point she asked, "How are you doing with that, with dealing with Ethan's diagnosis, too?"

We'd been here four days and the kids were playing (playing!) together. We hadn't taken out the DVD player once. It had rained several days but who cares, because they swam together in the rain and then we warmed up by the fire and everyone played Candyland. We were going to hike together to a waterfall and attempt our first ride ever as a family in the boat. Ethan had roasted his first marshmallow, and then the kids had gone on the swings and sang VBS songs at the top of their lungs.

There were many ways I could have answered her question, depending on the day, my mood, my hope. I've found most often, though, the way I answer that question now relates directly to both the passage of time, and perspective.

"It's been hard. It was hard at first," I told her. "But once I accept the fact that he is different, I can see all of the wonderful things he's doing, and I'm very grateful."

When I see Ethan through the lens of Andy's autism, it hurts everyone. When I see him as compared to typical kids his age, it benefits no one. When I see Ethan for Ethan, just Ethan, with his own strengths and weaknesses, on his own timeline, then I truly see. Then I rejoice in his progress, and relish the little sweet moments.

Like jumping over puddles and picking blackberries. Like playing chase and throwing rocks and listening to our voices echo across the lake.

As school starts and the world of IEPs and preschool and expectations beckons, I must do this. I must remember this.

What I Wish I Had Known

I was sitting around the other night, listening to the frenzied song of crickets and cicadas out in the steamy evening, thinking about babies and feeling melancholy.

This is not quite the way it may sound.

I wasn't exactly longing for my own baby. Dan and I always thought we'd be done with two, although I'd felt I'd be happy with "two or three." While I love babies and would certainly (after recovering from the shock and adjusting to the idea) welcome a surprise baby, I am for the most part glad to be done with that phase of our lives.

No, this was something different.

I was imagining what it would be like to be pregnant again, without the fear. No, that's not right either. No mother or expectant mother lives without some measure of fear. I guess what I mean is I was wondering what it would be like to be pregnant without the illusion of control.

We parents like to think we're in control, don't we? That's what those parenting magazines are all about. Eat this, not that. Purchase this kind of car seat. Don't use this type of playground equipment. Do everything right to ensure the best possible chance that everything will be just fine.

I'm not against safety, healthy eating, and common sense. I believe in being responsible and teaching my kids to care for themselves in a responsible way. But I no longer believe in formulas. I no longer am ruled by the rules, because sometimes the rules really are just ways we buffer ourselves from the truth that anything can happen, and sometimes it does, despite our best efforts.

When I was pregnant with Ethan, I had so much fear. I look back now and am not sure why. Did I intuitively sense something; was I trying to prepare myself subconsciously? I don't know, but I felt sick with worry sometimes; plagued by worry. There were times I thought if I just prayed enough and believed enough, everything would be okay. I still wasn't trusting God. I was trusting that my "good luck charm" form of faith would chase off all the bad things. So I fretted. I worried. I prayed. I fretted. I worried. I tried to believe. I fretted. I worried.

And all of it, the whole mess of it, got me absolutely nowhere. I used to think I should expect the worst so I wouldn't be disappointed. Now I know expecting the worst is incredibly draining and doesn't make you feel any better if the worst actually happens. In fact, in my case I felt rather foolish. My worry did nothing except gnaw away at me each day. Why not expect the best...and if that doesn't happen, expect the best out of whatever situation is handed me?

What I was thinking, the other night as I mused, was what it would be like to go back with what I know now. I would do my best to do the right things but not torture myself if I ate deli meat or sipped part of a Diet Coke. I'd enjoy the process without fretting so much about how to influence the outcome. I'd live each day of my pregnancy a little freer and lighter just because I'd know that I didn't have control of every nuance of my life and never would. No one does. I would live rather than live in torment.

We can't dance with our arms wrapped around us. We have to open our clenched fists and let go of everything we thought was ours.

As I was falling asleep thinking about all of this I realized I will most likely never have that chance to be a different kind of expectant mom. But that doesn't mean I can't take all that I've learned and apply it to the rest of my life. Instead of wondering what might have been, I can remind myself this is a lesson that I can live out again and again and again.

I am not in control. And that's okay. As Beth Moore once said: "It's only a wild ride if someone else is driving." We can pry our hands from the wheel. We can ease up our arms on the roller coaster. And we learn it's the wild rides that we most remember, that thrill us, that define us, in the end.