Fire Alarms and Emergency Lights

"Mamma, I have a quiz for you."

We are shopping in a big box store (BJ's, to be exact) and I just want to get out of there as quickly as possible.

Ethan continues. I know what's coming before he asks. "Somewhere in this store is a fire alarm. You have to tell me where it is." I dutifully look around for a little red box affixed to the wall. Never before have I gone to so many different stores or eating establishments and searched for fire alarms.

But then, several week ago, Ethan had a fire drill at school.

I've noticed this trend, with almost any person I've met on the spectrum. Something happens, something significant to them in a certain way, and the event imprints something into their brains in a way that does not occur with a typical person. The memory, for whatever reason, triggers various obsessions. It can lead to, to use a fancy autism word, certain perseverations or fixations.

We had this happen with butter, of all things. One day at Big Y I bought two boxes of Big Y generic butter because we were going to be doing a lot of baking. Ethan enjoyed picking the yellow boxes off the shelf and putting them in the cart, and loved that we were getting two, not one. Now, for almost a year, every time we go grocery shopping he asks to get butter. And it has to be that brand. Thankfully, he doesn't melt down when I say no, but he's always disappointed, and he always tries to take the boxes off the shelf and "help me out" by placing them in the cart.

Then we have the fire alarms, and I'll add to that "emergency lights." I have to be thankful here. The fire drill on the second day of school could have been disastrous. Ethan could have come home petrified, afraid to go back to school because of the noise and flashing lights. But over time he's learned to adapt fairly well.

He just now wants to chat about fire alarms. A lot.

And so, from day one following the fire drill, we've talked about many things. We've discussed the way the fire alarms in the gym at school echo. We've pondered whether or not the principal has a big secret button to trigger the fire alarms. We've awed at the fact that, when Anna's school had a brief power outage, she got to see the emergency lights go on, and they were yellow. We've talked about why our house does not have emergency lights. This troubles Ethan greatly, because he wants to know how we'll see if there's a fire and the power goes out. We also touched briefly on the fire extinguisher in our kitchen (and how, most importantly, it's for mom and dad to use).

In McDonalds last week, Ethan's eyes darted around the restaurant the moment we walked through the doors.

"There's only one problem," he announced while we were waiting in line. That's his new phrase. Ethan's always finding one problem, always discovering the one thing that has disrupted life from it's usual order. "The problem is, I don't see a fire alarm in here."

"Ethan, I'm sure there's one in here. You just can't see it."

"Well, where is it?" I didn't have an answer, but of course I scanned around. Autism has a way of catching you doing things you never thought you'd do: like driving around the town looking for cul-de-sacs, finding all of the local churches that have steeples with bells inside, and drawing pictures of  the signs for men's and women's bathrooms (all prior Ethan obsessions).

Thankfully, the food and tunnels were attractive enough to lure Ethan from searching for awhile, but when we stopped in the bathrooms, he came over to me with a big smile on his face.

"I have good news!" I knew just what this was about, of course. "The fire alarm and lights are right above the bathroom doors." You would not believe the smile and relief on his face. The things that give him pleasure both bring me pause and make me smile.

Then we were off. Today we may search for new fire alarms. Tomorrow the obsession may be gone...only to be replaced by another. And since Ethan is learning not to let these fixations rule his life (but only quietly occupy a portion of his brain part of the time), I can only be grateful, while wondering what's coming next.

To the Two Men in McDonalds

I saw you both, and I knew.

To the man in your late forties, with the son about twenty:

I recognized the scramble, the tension, the just-wanting-to-get-your-food-and-sit-down. Your son kept dashing over to the soda area, then stood rigidly in line, fists clinched together, squinting at the lights and beeps and busyness. Sensory overload. I could almost sense your relief when you got him to the table, then your panic when he bolted over to the napkins. Your son kept touching his nose to the lid of the cup. This is probably something he finds calming. He ate quickly, without looking at you. You were both gone when I looked again. The food disappears fast, I know. Especially when there's no conversation. Especially when your son always wants to move on to the next thing.

To the man in your late sixties, with the boy a little older than Ethan:

I saw the wary eye you kept on your grandson. He had been climbing in the tunnels but kept going over to the door. Oh, that darned automatic door in the Manchester McDonalds. How many times Ethan used to spend over there, pressing the button, stepping to trigger it opened and closed, while I wished he would just play. I saw your tension when your grandson came over to me. He stood too close to Anna and I, and Ethan, who was pulling on his sneakers to leave the play area.

"What are you doing?" he asked no one in particular.

"You like that door, don't you?" I asked.

"Yes, because it has a button!" he answered.

"I know, I know. This little guy here used to LOVE that door, too," I said, pointing to Ethan. But then you came over, grandpa, and I know you were worried your grandson was bothering us.

"Go play," you said to him with a wave of your hand, not unkindly. You never looked quite at me. I know the maneuver. It's the let's-just-get-him-away-from-bugging-people-and-standing-out-too-much.

There are things I wished I could say to you both. Every time this happens, every time, I wish. I wish I could tell you I know. I wish there was the time to tell you about my son, and especially my brother. I wish I could tell you, grandfather, that my son has moved past playing with the doors but now needs to ask where the fire alarm and emergency lights are, wherever we go. He's quirky. It's okay. I wish I could tell you, father of the non-verbal son, about my brother trying to run to back to the kitchen at Red Rose Pizza to grab his own dinner; or dashing to the front of the church when I was a kid, after turning off the lights on the congregation, or the time I took him for a walk and he sat down, refusing to budge, reducing me to tears, until a neighbor came out of a nearby home and tried to figure out how to help me.

I wish I could tell you I am never staring and never judging. I wish I could tell you I understand and that this whole thing with public places really sucks sometimes. The stress. The sometimes ignorance of others. The way being out in public makes you realize how different your life really is.

I wish I could tell you that you're not alone.


There are days when I look at my brother and I'm frustrated. I'm frustrated at his lack of ability, at the way autism rules his life, about so many things he's lost out on due to his disability. But then there are the times I look at him and think of what I have gained. Andrew has given me a compassion I never would have had. He's given me eyes that see differently. He's pricked at my heart in a way that I, that we all, desperately need. And despite everything that seems lost, I desperately thank God for that. I thank God that while no one else may have noticed, I saw these two families I will never see again, and I felt.

I just wish, oh how I wish, that I could have told them.

Homesick

We had just returned from Open House night at Ethan's school, and now he was in his jammies and ready to climb under the blankets.

Open House had been a night of relief. I tried not to obsessively pepper the teacher with questions. We heard things that surprised us (he and another boy are over the roof with math skills; she's sitting down and working on DRA Level 3 and 4 books with him -- seriously??; he's not really depending on the para at all) and things that didn't surprise us at all (he doesn't relate much to other kids and likes to stick to his one familiar friend). The teacher, Mrs. B., gave everyone a scavenger hunt throughout the classroom to help learn about the different things the kids do. Can I just love on the teacher for a moment? I LOVE Ethan's kindergarten teacher. She's motivated; attempts to make learning interesting and fun; has 19 kids to manage but still seems to "get" Ethan. We couldn't have asked for more.

But now we were home and Ethan needed to go to bed. I decided to sing to him. I do that sometimes. Ethan loves music, and he loves making up songs.

There I was, on his bed and singing for a moment a little ditty about school before tucking him in, when I saw his lower lip begin to tremble. He was blinking fast.

I stopped. "What is it?"

"I liked school better last year." He sniffed. "When I'm at school, it's a long time. I wish mamma was there." There were tears in his eyes that didn't quite make it out to his cheeks.

I remembered when Anna started preschool, just three mornings a week. On the nights before school days we would always pack up her backpack and put it at the bottom of the stairs near the front door. She confided in us a few years later that many nights she would wake up and look to the bottom of the stairs, see the backpack, and feel sad. She didn't want to go.

Those same feelings of guilt I felt when she told me (even though it was years later and she was then enjoying school very much) swirled around me.

"I miss mamma when I'm at school," Ethan was saying, and I wanted nothing more than to wrap my arms around him and not let him go. In moments like these, when I think of my kids feeling lonely and wanting mom and dad; I want to take my kids home and teach them myself; keep them safe and protected; eliminate any chance of pain or heartache.

The moment was gone as quickly as it had come. "Goodnight," Ethan said, getting up to turn on his CD player. His eyelids were heavy.

I closed his door behind me, thinking of how hard it is to shake those weighty guilt feelings sometimes, as a parent. Even when your child is doing well. Even when you know your kids are where they're supposed to be, at this very moment.

I remembered myself at Ethan's age. Something as simple as forgetting a spoon for the soup I'd brought to school would send me into that insecurity....I wanted my mom! I didn't want to be in a cafeteria of loud kids, unable to finish my lunch, feeling as if my world was slightly askew. I didn't want things to change.

But you know, I'd made it.

And Anna had made it through those first few months of dreading the backpack at the front door.

On this night of hearing how so many things were going right at school, I knew: Ethan would be all right, too.

And so would I, if I remembered to trust and entrust...not just in his abilities, or the teacher's, or mine as a parent, but trust in and entrust him to a God who is always there for him. Even when I can't be.

Miracles

We were in the middle of our big ultrasound for baby #3, and the tech commented, "Awww. I think the baby's sucking its thumb."

While to me most images on an ultrasound screen look like something out of an alien movie, it was hard not to sit there and be awed by that for a moment. Then I had a memory. I recalled the satisfaction Anna had when she was about seven weeks old, finally getting her thumb into her mouth. We were in Maine and my parents were there, and she was the first child/grandchild, so this was indeed a BIG deal.

When Ethan was that age, he couldn't do it. I would watch him struggle. His arms were always flailing. It was like he wanted to get his hand up there, but his body wouldn't go quite where he wanted it to go. Now I know some of the reasons why he was a fussy baby. Thanks to what we now understand is low muscle tone, it was hard to pick his head up off the floor during tummy time. He'd grind his head into the carpet, turning red and crying. And his struggles with "poor motor planning" (more lingo!) made getting the thumb into his mouth harder than for the average baby.

Every once in awhile something like the thumb incident will jog a memory. I'll remember pieces of Ethan's autism puzzle that I picked up on early on. I just didn't know where they fit.

I used to attend a play group. Another mom there had a daughter maybe a week older than Ethan. One day I remember watching the baby gnaw a piece of fruit it one of those mesh feeders, and I knew Ethan would not able to do that. Later on I watched the son of another friend, younger than Ethan, reach into a container and pull out Cheerios one by one to snack on. That seems like such a simple action. Yet I knew Ethan would have trouble, and couldn't understand why. Some of the issues he had were so subtle I didn't know they were a problem until I saw a child his age doing something with ease and realized he couldn't.

When I look at Ethan today, and it sounds cliché, but I'm amazed at how far he's come. If there's any phrase that fits his development to a "t," it would be his ability to use his smarts to compensate for what he doesn't have. This boy who had physical therapy for a year, who still takes OT and supposedly has moderately low muscle tone in his upper body and still has fine motor skills issues...this boy rolled over both ways by five months...crawled at 8 months and walked at 13. This boy tackled the monkey bars before many of his typical friends and is learning to write relatively neat letters and is working on shoe-tying, too. His physical therapist sees him now and can only shake her head, the change has been so striking.

Sometimes I'm amazed at the way our bodies work. It's like the blind person who has an extremely overdeveloped sense of hearing to make up for what's lost. It's like the person with no arms who paints masterpieces with their feet.

Sometimes I have to remember to stunned by who each of us are. There's nothing like participating in the process of growing another human to help remind me of that.

I'll never forget an excerpt from a Phillip Yancey book, Soul Survivor, in which he talks to Dr. Paul Brand, who worked for many years with people with leprosy. Brand had a completely different take than most people's on this crazy, mixed-up world. Pain, to Brand, was a good thing. Absence of pain is what causes people with leprosy to eventually lose limbs and other crucial body parts. And also, to Brand -- the universe was a friendly place.

Yancy writes: How could a good God allow such a blemished world to exist? Brand had responded to my complaints one by one. Disease? Did I know that of the 24,000 species of bacteria, all but a few hundred are healthful, not harmful? Plants could not produce oxygen, nor could animals digest food without the assistance of bacteria. Indeed, bacteria constitute half of all living mater. Most agents of disease, he explained, vary from these necessary organisms in only slight mutations.

What about birth defects? He launched into a description of the complex biochemistry involved in producing one healthy child. The great wonder is not that birth defects occur but that millions more do not. Could a mistake-proof world have been created so that the human genome with its billions of variables would never err in transmission? No scientist could envision such an error-free system in our world of fixed physical laws...

Like a tour guide at an art museum, he excitedly described the beautiful way torn muscle filaments reconnect, "like the teeth of interlocking combs," after an injury"... [he said] after operating on thousands of hands, I must agree with Isaac Newton: In the absence of any other proof, the thumb alone would convince me of God's existence.

There are times it's easy to look at people with special needs and see their deficits; to look in the mirror and see nothing but imperfection. And then there are the moments you realize there is so much more that you're seeing.

No one will ever convince me that we are random acts of the universe. Flaws and all, each and every one of us: we are miracles.

Longing

In the mornings, walking Ethan into school, we pass the long train of buses. Kids are pouring out of each of the bus doors. I see them greet each other; find their already "special" friends after just two weeks of school; take hands or giggle as they bounce towards the school, and I wonder.

I am grateful Ethan has had such a good start to his kindergarten year. I'm happy he is sharing a para he seems to really like and has a teacher who seems "on the ball." I'm thrilled to hear he has really good math skills, and to see this boy who used to be so averse to writing learn how to craft upper and lower case letters legibly across a sheet of paper. I love to hear him repeat songs he's learned and overcome his fear of the cafeteria.

I just wonder if he's making any connections.

"Who's your favorite friend to play with at school?" I ask him, indicating I mean other than his friend he already knew from last year.

"No one," he answers matter-of-factly.

Another time, I ask him about the playground. "Who do you play with on the playground?"

"I play by myself," he tells me, not the least bit phased. It's only me who is.

The para tells a different story. "How's he doing with other kids?" I ask gingerly one day. "Does he like them? Ignore them?"

"Oh, he plays with the other kids," she says. "Ask him about N.," she mentions another boy in class. "They play together sometimes."

Yet Ethan tells me nothing about N.

Open House night is coming up. We'll have a chance to see Ethan's teacher for the first time since Back to School Night, and I'm still nervous to ask.

I can ask if he has any friends, but there is more I won't ask.

I won't ask if the other kids snickered when he held his hands over his ears because the fire drill was too loud.

I won't ask if someone laughed, hearing from his homework paper that when he grows up, Ethan wants to "fix power lines."

I won't ask if he annoys kids when he tries to relate to them by poking or getting in their face.

I won't ask if they are puzzled by the fact that he sometimes shows his affection for people by looking away and refusing to look at them when he sees them for the first time that day.

I won't ask, if none of those worries are true, if she knows what age it will start to happen, when kids begin to realize who really is different; who can't pick up the social cues and fit the right way into the games; if she knows when kids get cruel. I don't want to know.

And I won't ask if he's on the playground perfectly happy, playing alone -- because I know what's most important is that he's happy. Yet everything in my somewhat-typical brain still wants him to find joy and pleasure in relationships. Every part of me knows that I always seem to raise the bar higher --in those times that he does reach out to other people, I'm analyzing how he could better relate, better get along.

I don't want to look at him and think that what he's doing is never enough.

Yet when I watch those kids, when I hear the chatter and see the eye contact and conversation that flows with ease...

I wonder.

The Lalaloopsies Move Out

If there's one thing we fight about with Anna, it's her messiness; namely, the state of her room. I can't tell you the number of arguments we've had; the tears; the yelling; and the wavering Dan and I have done not knowing how far to go with expecting her to pick up after herself vs. not forcing a naturally messy 9-year-old not strong in organizational skills to be as neat as either of us would be (not that we're all that neat ourselves).

Anna's bed usually has little room for her to actually sleep, and she has a full-size mattress. I've found outfits on or in there. A hairbrush or water bottle. Pictures she's drawn, sometimes, a pencil or crayon or two. For the past few years her comforter has been hidden under menagerie of stuffed animals as well as Pillow Pets and Lalaloopsy dolls.

The Lalaloopsy thing started well over a year ago. Like the rest of her family, Anna is a person of rather singular focus. She decides she likes a certain toy, and she goes all out. She'll attempt to collect nearly every item related to that toy, and favors the toy over all others. First, it was My Little Ponies. When we brought her My Little Pony collection to the library to display last year, mouths dropped open. I looked sheepishly at everything we were carrying in and wanted to shout, "We don't spoil our kids! I swear! This is almost exclusively what she's asked for or paid for with allowance for the past two years! Really!"

And so the Lalaloopsy phase began, and at this point we have something like 35 big-headed, small-bodied Lalaloopsy dolls (never mind the miniature ones). Every night, Anna has had to gently push them aside to try to find some room to actually fit her own body on the bed.

"This CAN'T be comfortable," I would tell her, and always get the same reply: "But they're my BABIES! And they help me feel safe."

When we started asking Anna to consistently make her own bed, the Lalaloopsies presented more of a challenge. It's kind of difficult to pull up a sheet and make the bed nice and smooth when there are 35 dolls in the way. Never mind the days when I needed to pull off the sheets to wash them. God forbid I toss them to the floor without thinking.

"You're hurting them!" she would wail. On my less-patient days I admit there were threats to banish the Lalaloopsies to a box, a bin, anywhere where they weren't constantly cluttering up her blankets.

The other morning when I went to wake Anna for school she was sleeping next to a crumpled note she had apparently written the night before. "The Lalaloopsies have decided to move out to the dollhouse," it said. "They want more room. Tomorrow is moving day."

Anna has a dollhouse she begged for one year and never plays with. It basically sits vacant and collects dust and other random objects. I'd told her before it would be a good place for her Lalaloopsies, to no avail.

A few minutes later, she was more awake.

"So they're moving out, huh?" I asked.

"Yeah," she said. "They said there's just not enough room for them to get comfortable."

"I think they'll be really happy in their new house," I said.

"They're excited. But I don't know about nighttime. What if they want to sleep with me?"

"Why don't you choose one for the night? Whichever one behaved best during the day."

Anna liked that idea, and as I left and she got dressed I thought about the note, scribbled in her typical-Anna messy scrawl with numbers of words misspelled. I wondered if the note was for us, but also for her.

I wondered if it was not so much telling us what she wanted to do as much as it was asking a question.

Is it okay, she seemed to be whispering in-between the lines. It is okay to take this little step out of childhood? Is it okay to test the waters and to start to grow up?

After-School Eruption

We made it through week 1 of kindergarten.

Ethan survived the cafeteria, including buying hot lunch one day, and even a fire drill (I heard a detailed report about how loud it was; what color the lights were flashing; the fact that the gym echoes the alarm noise more; and musings about where the special button to set off the fire drill actually IS).

According to my son, his seat has already been changed once due to poking and chatting with his one buddy from last year. I'll call him J. At the same time, he tells me his "table" (the green one, not red or blue) has 14 pom-poms for good behavior, and that means they are "ahead." I've been waiting (dreading?) a note home from the teacher about the goofing off, but nothing yet. Maybe she's trying to spare me.

Oh, and they are counting to the 100th day of school. Yesterday was Day 6. I get a report every afternoon, or sometimes even in the morning, in Ethan's anticipation of the number going up on the smart board in class. I think it might be his favorite part of the school day.

The other day Ethan ran to me after school, backpack bouncing, all smiles. He climbed in the car. And then he exploded.

Here's what you have to understand about my kids, and especially Ethan. They have tantrums, yes, but they don't usually erupt with emotion about what they're feeling deep inside. This goes for Anna, too. She will cry or complain, but sometimes it's hard to get to the heart of the matter. I remember distinctly twice that Anna "lost it." Both times left me shocked. One was in Maine where she ran outside our camp and into the woods, yelling about how it wasn't fair she wasn't a "cute" preschooler like Ethan anymore, how she wanted to be little again. The other (ironically, these days) was when she started yelling one day after school about how she was tired of her brother, how she wanted a new baby in the house, and all of her friends had sisters, and could we adopt? Both times left me simultaneously wanting to smile and cry.

Here's the thing about autism: a lot is said about the lack of expression of emotion people with autism exhibit. It's not that they don't feel it, it's more in the way it comes out or the way it's held in. There's a lot of talk about people with ASD having "blank" expressions, or not expressing a "full range of emotion." And I'd have to say with Ethan in some cases that's been true. Until this summer I realized he'd never risen his voice. He'd gotten angry, yes, but he never yelled. So the first time he did (at Anna, of course) it startled me.

He's gotten yelling pretty much down (should I be cheering for this?) but I'd rarely heard him shout out what was really bothering him. Until the other day in the car.

His sunny mood turned dark in about 5.3 seconds:

"I HATE that teacher!"

"Woooahh, we don't use that word. What's the matter?"

"I hate it! She has to let me poke J! I want to! She has to stop telling me that I have to stop talking to him."

"Are you talking during class when you shouldn't be?"

"I don't care! I WANT to talk to him!"

"Ethan, school is about learning first, not just having fun."

"NO! School has to be about having fun, NOT learning!"

"Well, it's not."

"Well I WANT to keep talking to him. If she keeps doing that, I will be very mad at her. I will tie her up! I want to talk to my friend J! She is very bad! She is absolutely BAD!"

This went on the entire car ride home...and as we gathered our things out of the car...and as we got settled in the house. I stood there with my mouth opened, trying not to laugh while simultaneously chiding him when he got too forceful with his words.

Then, like a switch flipping, he was done. He ran off to get a snack. I sat there, thinking.

The tendency was to worry first. Was he already burnt out from school? Was he being the annoying, disruptive child in class? Was his one friend already bothered by him? Why was he using the word "hate?"

But then I had another memory, of Anna coming home from kindergarten or first grade one day. She was mad about something that happened with a friend. She started yelling. Then she said she was going outside to make a "trap" for the friend. I looked out and saw her building some sort of contraption with ropes and sticks. When she returned, she was much calmer. All seemed forgiven.

I'm not going to freak out about Ethan's freak-out yet. Maybe he's just learning to get everything that's in there out. That's not necessarily such a bad thing. I guess we have to learn what's in there first, before we can help him to appropriately cope with it.

A Cuddle in the Dead of Night

It must have been 3:30 in the morning. The thunder was loud, and I rolled over in bed and heard a voice.

Ethan was standing there looking at me.

"There's a lot of thunder and lightning," he said, his eyes big.

"Do you want to come in bed with us for a little while?" I asked. He crawled up.

It's no secret to most people I know that I've had sleep issues for years -- really since before Ethan was born. I'm a light sleeper. I fall asleep and then wake up with a start in the middle of the night and start thinking about everything I need to do the next day. I tend to fall asleep again around 4 a.m. only to be woken up not much later by the kids or by my own sense of needing to get things done, since I'm a morning person and function best then.

When Anna was little, she had a knack for padding into our bedroom on those nights when I was finally, actually, truly in the middle of a deep sleep, and waking me up because she'd had a bad dream, or was thirsty, or couldn't find something. This is part of parenting, I know. And I had no problem comforting her. But after awhile, we began to realize that some of Anna's so-called nightmares seemed a bit...fabricated. And she wasn't all that scared -- just a good actress. She sometimes was actually just looking for someone to chat with at say, 3 a.m.

So by the time she was about 6 or 7 we put our feet down and said she couldn't wake us up unless there was truly a problem. She's been good ever since.

We had a storm in the night back in the beginning of the summer. In the morning, Ethan announced, "I didn't like that storm. I hid under my pillow the whole time because I was scared."

"You heard all of that?" I asked him, surprised. We hadn't had a clue. A few weeks later, it happened again.

"I was scared last night of the lighting so I hid under my blanket," he told me.

I thought of him there, huddled and shivering while the lightning flashed and thunder roared. I realized something. Ethan was 5 1/2 years old and not once had ever come into our room to tell us he was scared, or thirsty, or anything.

I thought of so many stories, so many children on the autism spectrum who don't express their fears, and their parents wondering, "Is he okay? I don't know when he's scared. He never tells me. How will I know?" I read the blogs; the essays. Their words, the pain parents of who want to help but don't know how, because their children won't or can't tell them how, cut me to the heart.

"Ethan," I told him. "You know, you can come to us in the night if you're scared about something." He didn't answer. "You can tell us and we will give you hugs and try to help you feel better," I continued.

That was two months before. Now he was huddled next to me in the bed, taking all the pillow space, pulling at the blankets.

Two hours later, when Ethan has still not fallen asleep and is back in his room with the light on, playing with his air conditioner and fan and blasting the CD player, I will be in annoyed-mode once more. I will remember my ongoing battle with insomnia and know I have opened up a dangerous can of worms.

But in that moment, with cold little feet pressed against me as the storm rages, I could only think:

He came to us.

He'll be six years old before we know it, and he finally crawled out of his bed to tell us when he was afraid.