Monday, March 31, 2014

Reality Check

So Dan and I have this running joke every July after baseball's All-Star game. Dan, who cares little for sports, always starts singing that hokey Christmas song, "It's the Most Wonderful Time of the Year" because that day or two during the break is the only time all year that no professional sports are in session.

I could create my own version of the song every year when we go with Ethan to visit Dr. Milanese, the developmental pediatrician. Except the song would be modified: How about -- "The Most Deflating Time of the Year?" Or to quote another early 90s staple: "Back to life, back to reality..."

It's not as if Dr. Milanese takes joy in bursting the bubble. She always says straight out that she's not setting out to be critical...but just looking with a careful eye at things the school at times wants to "gloss over." Her job is to point out what still needs work, where Ethan's still struggling, and what might cause issues for him down the road. Call it the "Yes, but..." factor.

Dr. Milanese doesn't care if he's reading at a DRA level of 12 when they need to be at a 6 by the end of kindergarten. She doesn't care he's in the advanced math group, has no need for a paraprofessional, transitions well, or has several close friends.

Her job is certainly not to pat us on the back or offer accolades. She is there to note, for example, how Ethan has trouble with conversational exchange, interrupts in a manner more akin to a younger child, and doesn't really focus on reading others' cues.

Beyond that, she knows her role is to point out how these issues now can lead to trouble down the road...with peers misunderstanding him in the later grades; with a job interview gone awry because he couldn't look the interviewer in the face.

There is nothing she said that wasn't true during Ethan's visit last week. So why was I bothered by it? Why am I always bothered?

Maybe it's because most of the year, I am blessed to hear Ethan's teachers and therapists gush about him; his smarts; his progress. This is wonderful: until we go to Dr. Milanese, and I wonder where the truth lies and why I hear two different stories. This makes me start to believe either Dr. M. is exceedingly negative, or the school says things we want to hear or to make themselves feel or look better. I'm guessing the latter.

Dan says I'm going about this all wrong, and asks why both sets of observations can't be true. I suppose that's the healthy, realistic way of looking at things.

I don't know. Maybe it's this: That every year I get lulled into this little bubble reinforced by people like the swimming instructor ("I wouldn't have known he was autistic unless you told me") or the parent of a classmate at a birthday party ("Really? I had no idea..."). Then I'm reminded that we are in the easy years, that (as Dr. Milanese pointed out) the bar only gets raised higher, the social expectations more complex. That's not to say she didn't think Ethan couldn't reach them, in time. Just that he's going to have to continue to be taught.

Then I made the mistake of going home after the appointment and not but a few hours later watching this.

In this clip at about 32:00 from a recent episode of Parenthood, Max, the character with Asperger's, had insisted on going on an overnight class field trip without his mom chaperoning. He ended up needing to be picked up after completely melting down. The parents find out why: another kid peed in his canteen. In this scene, for the first time, Max not just realizes that the other kids don't like him or that he's different, he cares, and it breaks both his and his parents' hearts.

I sat there and watched and (as I often do with Parenthood episodes), cried, because as easy as things seem to go these days, as Dr. Milanese portended, I could see that being Ethan in a few years. And I knew that was why I don't like these visits -- because she cares little about the now. She looks to the 10 years from now, even when we don't want to.

After awhile, I put the visit with Dr. Milanese back into its usual corner in my mind: not too far back, not right in front of me. Somewhere right in the middle, where I can look to see if there's anything we can do today to impact tomorrow, without going crazy, without sacrificing Ethan's childhood by throwing him into social skills groups every day of the week. We always to some extent have to at least halfway let it go, because of course we don't know where Ethan will be in five or 10 years. We can be optimistic or realistic but it doesn't do too much good to be completely pessimistic.

And, as Beth Moore once said, God doesn't give us the grace to deal with "down the road." If Ethan has Max-like moments then, there will be a way to bear it. Then, not now. Grace for the moment. And in this moment, that means grace to get to the next one and the next and the one after that, without bowing to the constant chatter of worry, the continual wonder of what ifs as we gaze ahead at a great unknown.

Thursday, March 27, 2014

The Day I Caved

I am not a huge fan of Jenny McCarthy.

I don't believe vaccines caused my son's autism.

I can't stand fear-mongering and miseducation; I hate to hear about measles spreading through a town because people were afraid to vaccinate their kids.

Yet a few days ago, the night before Chloe's two-month appointment, I found my heart pounding.

I knew what would be coming. I could see the flyer posted in all the exam rooms at the pediatrician's office, the one that highlights the immunization schedule. Four shots. Each one not just one shot but bundles of shots. And then of course that very evening someone on Facebook posted yet another vaccine/autism link article, this one about monkeys developing autism symptoms after getting vaccines.

I looked at my baby. I thought about the way she smiles and coos. Already she tries to babble back at me. Already she smiles and vocalizes much more than Ethan did at that age. I've realized now that some of my anxiety when he was a baby came because I was not able to make a connection with him, despite my overtures.

Chloe already connects with me.

I looked at her looking up at me, and I could hear the voices of people I didn't believe in my head, voices on message boards and in books. She was perfectly fine until she got her shots. Then everything changed.

I tried to balance that with the voice of reason. Shots made no difference for Ethan. He was always different. I've always believed his strain of autism has an obvious genetic component.

But what if? The voice in my head questioned. What if there are genetics, but something environmentally flips the switch and makes the potential that's there become reality? Something like a bunch of vaccines?

And while I didn't believe it, a tiny part of me believed it...that tiny part that, in the midst of me loving and enjoying my baby, is keeping a hawk's eye on development to make sure things are on track.

In the doctor's office the next morning, my heart was hammering once again. The nurse came into the exam room. "Okay, let's talk about vaccines..."

"Is there any way we can split them up?" I blurted out. "You know, do half today and maybe the rest in a few weeks?"

"Uh, sure. We have people do that. You'll have to talk to the doctor about it," she replied.

When the doctor came in, there was no way I was telling him why. This is the doctor who thought Ethan was just fine and to "wait things out" when he was 18 months old and showing some troubling signs socially. This is an old-school guy who's not a fan of old wives' tales, overly emotional people, and making decisions based on fear rather than fact. I knew the lecture I'd get if I told him. I knew he'd carry on about how vaccines don't cause autism, and to that I'd want to yell:

I know. I know, I know, I know. But right now, today, I'm feeling kind of scared. And I know I'm being irrational. The last thing I want to do is be irresponsible. I will get my child vaccinated. I'm just having a moment here. You would too, you know. You would too.

Because that's just it. Such is life with having a child after having a child with special needs. I don't walk around in fear all the time. You can't live in that place. But you still have to be vigilant. Most of the time, that means being perfectly reasonable, like checking those milestone charts in the What to Expect books every once in awhile. But then there are days you are human. There are moments of weakness when you know you're not making sense, and you know what you're feeling is coming from the past, and you know you just have to wait it out without getting too drastic.

I didn't go into specifics with the doctor, and he didn't ask. We agreed: two shots that day, two in two weeks. The nurse did her thing, Chloe cried and fell asleep.

Yes, I know I caved. I gave in to fear. But this time, I refuse to beat myself up. Driving home I could almost hear an old therapist-friend of mine. She used to say that there are times when instead of being hard on yourself, you need to give yourself a virtual little squeeze on the back, and say in a gentle whisper, again and again: "It's okay, baby girl."

It's okay, baby girl. It's okay. This whole thing is hard sometimes. You're going to have moments like this. Just don't live in them. Don't stay there.

Chloe slept and slept and slept after her shots. Then she woke up and gave me one of those huge gummy smiles. I let the sigh of relief slowly escape me, and smiled back.

Saturday, March 22, 2014

Anxiety, Imagination, and The Brady Bunch

There are times we have conversations with Ethan that I just can't envision your typical family down the street, or anywhere, having.

Our latest one involves fear and The Brady Bunch. Yes, I have to admit it: I've gotten all nostalgic lately watching Brady Bunch reruns with the kids. Of course, the show was cheesy, unrealistic, formulaic, and had a host of other faults if you're looking for "quality television." But it was a mainstay of my childhood. Sitting down to watch an episode brings me immediately to afternoons as a kid, up the street at my grandmother's house watching Channel 56 out of Boston, waiting for her to finish making me a steaming bowl of chicken soup.

So the kids and I have been watching The Brady Bunch. Of course I have every episode practically memorized. Anna's now at the perfect age to think the show is funny rather than just corny, and Ethan, well, he tries to follow the plots. I've found that he's memorized which music plays when, and is constantly asking things like, "Why is that funny?" or "Who is sad?" completely based on which little riff is playing. We also have constant discussions about who is older: Greg or Marcia? Mr. Brady or Mr. Brady? Alice or Sam? It got to the point where I started to look up the actual actors'ages on Wikipedia so I could give him the answer...but of course then he wanted to know why "Bobby" was named Mike Lookinland and so on, and I think the idea that all of these people didn't really have their TV names threw him for another loop.

And then there was the episode yesterday, which involved Bobby getting a kiss from a girl (played by the actress who was also Mary on Little House on the Prairie). In a later scene, the smitten Bobby daydreams that his little girlfriend is running toward him, in slow motion, arms outstretched, and then they fall into each other's arms and embrace. If you happen to be curious, the moment is at about 1-minute here.

Two hours later, getting ready for bed, Ethan started to get nervous. First, while he was in the bathtub: "What if I see her?" he asked.

"Who?" I wondered.

"That girl. What if she starts running at me?"

It took me a minute to figure out who he meant. As he headed up the stairs to get his jammies on, he wanted me to come with him. "What if she's up there?" he asked nervously.

"The girl from The Brady Bunch?"

"Yeah. I don't like her looking at me."

I thought back to the scene from the show. I think I was starting to see what was going on. Kind of, within the limits on my non-autistic mind.

"Ethe, you didn't like the way it looked like she was running straight at you, did you?" It's not the first time he's said that. We need to make a mental note NOT to bring the boy to a 3-D movie anytime soon.

"Yeah, and I also don't like that the Angry Bird is staring at me like that." He glanced over at the red stuffed bird in his room, which did very much look like he was giving Ethan a dirty look.

"Why don't you like things looking at you?" I asked. I wondered if this had something to do with eye contact. I felt like I was working to decode some kind of autism mystery.

He couldn't answer. "I just don't want them looking at me while I'm sleeping," was all he could say. I turned Angry Bird's face away from him.

"Why are these things so scary?" I asked again. Ethan was looking at a coupon I had from Kohl's with a photo of a man on the front. "And why is HE looking at me?" he demanded.

"Ethan, Ethan," I tried to explain. "All of these people aren't looking at you. They're looking at whoever took the picture, or on TV the person filming the episode. They're not looking straight at you."

He was quiet for a moment. "But what if I see her when I'm falling asleep? What if she comes in my room while I'm sleeping?"

"Ethan, that girl doesn't even exist anymore. Do you know she's like 50 years old now?" And once again, I thought: I never would have entertained that I'd be discussing or even thinking about the age of Melissa Sue Anderson with my six-year-old so he'd be sure she wouldn't haunt his bedroom.

That seemed to comfort him.

"You know, you can use your imagination for good things," I told him, tucking him in. "Instead of thinking about that girl, why don't you think of summer, and swimming? Or something else fun?"

He grudgingly said he'd try.

As I headed down the stairs, I wondered. I felt grateful at the crack he'd allowed my to peer into, the quick glimpse at how he thinks; how his mind ticks. But there was so much I didn't know. The whole thing was a bit humorous, but left me intensely curious, and left me wondering what's going on in the minds of other people on the spectrum...and most of all, what did they fear, and why?

I wondered if Ethan's imagination -- the ability to conjure something in his mind that wasn't actually there -- was actually scaring him. I wondered if there were days Ethan had to shut out the fear as he looked at people on movie posters or billboards or school posters and constantly imagined they were staring just at him.

Thanks to the Bradys, I was desperate to know more...about how he thinks, what he feels, and the way he perceives. Every little clue feels like a step in compassion and understanding for those who can't explain in any kind of way, like my brother, what they are feeling. Every moment shared is another tiny piece added to that infinite jigsaw puzzle.

Friday, March 21, 2014

It's Not Your Fault

Two-year-old Ethan and his favorite puzzle, 2010

Someone asked me again the other day. Someone asked me, when hearing Ethan may be discharged from special education next year, what I attributed to his doing so well, to being one of those types who people don't immediately realize as being on the autism spectrum.

I used to have a set answer for this. I used to toe the party line, attributing all of Ethan's strides to his early diagnosis and early intervention with therapies. I used to answer that way, until one day someone asked how I knew that Ethan wouldn't have made the progress he's made without all of the interventions, and it gave me pause. How DID I know?

How did I know for sure, when there are many, many parents who have their child in therapy by age two, who spend their lives in speech therapists and occupational therapists offices before preschool ever begins, who have their children receiving ABA therapy for up to 40 hours a week, and who see no.significant.progress?

How did I know, really?

This is not a slam on therapy. I do believe Ethan's therapy was tremendously beneficial, not just to him but to all of our family. It gave us many tools. It helped us understand him, relate to him, and help him better relate to others. But was there something about his therapies, and the fact that they started just before he turned two years old, that flipped some kind of switch or did some kind of rewiring that has made my son -- I don't know how to say this -- I guess, "less autistic?"

I don't think I can definitively say that.

This is the problem I have: it's the load we are putting on parent's backs. It's the fallacy that with autism, A + B will always equal C. It's the fear and the illusion of control (if you just do this therapy, that treatment, this medication, that diet, then you'll unlock the autism). If you just throw them every therapy under the sun before that critical window of brain development up to age 5 or 7 closes, then everything will be okay.

And what are parents left with, these parents who spent years turning their lives upside down to run their child around and overhaul the family's diet and spent money they may not have had on techniques not covered by insurance? Many are left with just echoes in their minds: I should have...if only I'd...what if I'd tried...

This breaks my heart. It breaks my heart to think of parents who would do anything to help their child make progress begin to blame themselves.

Like all of us, I WISH I knew. I wish I knew how to make things better. I wish I knew what caused autism. Anyone who tells you the answers are simple is, to put it plainly, deluded.

Some forms of autism can be hard, really hard, to live with. I say this knowing there are people out there, some with autism themselves, who swing the pendulum the other way and say we shouldn't even be talking about curing autism anyway, that acceptance is the real answer. That's true to some extent. Of course we accept what is; we love. But for those who watch their loved one struggle to communicate basic needs; or injure themselves; or remain almost completely dependent on others; or who live paralyzed by sensory issues or structure or the world they've had to build around themselves to cope -- of course you want more for them.

It's just in the process, you can't blame yourself. Even when that seems easiest...because at least if blame can be attributed somewhere, all of this makes a little more sense.

I can't take all the credit. I am not the "person who did it right" whom others should emulate. I'm just another mom, doing my best, asking God for help, sometimes striking out, and feeling grateful for the progress we've seen.

You know, my one theory about Ethan is that much of what he's been able to accomplish comes down to his smarts. The one thing that's always been said about him, from his earliest days of therapy, is how smart he is. Every single therapist and teacher has commented on his intelligence; how he learns so quickly. He's learned not how to become "unautistic" but just how to cope and adapt in a typical world. Most of the time.

I had nothing to do with that (maybe Dan did; he's the way smart parent). But neither of us DID anything. I know it's easier to write this as someone who has seen a lot of positives, but still I beg of other parents, including my own: Don't latch onto the lie. You are trying. You are loving. You are struggling. But you are not to blame.

Monday, March 17, 2014

It's Never Too Late To Learn?

While over a friend's house the other night for a "girl's night out," I was reminded again of how terribly unsophisticated I actually am.

This is nothing against anyone there -- they are a wonderful bunch of ladies, some from church, some from mom's groups or friends of friends, who aren't the types to look down their noses at anyone, but the fact still remains: if you're coming to my house anytime soon, it won't be for wine and cheese. It'll most likely be for pizza and soda, and probably served on paper plates and cups.

As people were sipping various drinks, I was recalling the last time Dan and I attempted to open a wine bottle. We don't really like the taste of wine, I have to say, so we don't have it very often. Let's just say the moment involved a cork disintegrating and wine splashing on the walls.

I've been thinking about this a little more recently, most likely because a certain birthday that includes a "4" in it is approaching more quickly than I'd like (it's nine months away still, but, yikes!). I've been thinking about all of the things I don't know or haven't done (yet)...and sorting out which ones are actually important. It kind of reminds me of an article Dan once read in Esquire magazine that defined the "manly arts" -- all the things every guy should know how to do. None of them come to mind at the moment, except changing a tire.

This is me right now. I step back and look at myself and think, "Darn, you really should know how to do that." Or I ponder what's really on my "bucket list" (like visiting all 50 states -- I'm up to 37!). I don't know; you could call this a mini midlife crisis, but I prefer the word "reflection."

Similar to Dan's upbringing, I've always been rather naïve or innocent (or perhaps the word is ignorant, depending on how you look at it). Neither of us were exactly the worldly-wise types, which I supposed isn't really a bad thing.

One example (and Patti, if you happen to somehow be reading this, I'm so sorry!): A summer day just after tenth grade. My best friend Patti and I headed to the local golf course near her house, well-known as a high school hang-out spot. We thought we'd try to find some seniors out there partying, and figured while the chances of them inviting us to join them were close to nil, we could maybe at least spy on them. But in case that didn't work out, we brought some notebooks to write in, because we were, well, nerds (as well as being band geeks). The day went on and while we heard people in the distance we never actually found any of the cool kids, but we did do a lot of writing. Wouldn't luck have it that at the end of the day as we were leaving, we came across two cops out looking to bust up the partying. They demanded we tell them where everyone was. In a moment of sheer panic, I blurted out, "We don't know where anyone is! Look at us! We're rejects!" I held up my notebooks. "We came here to write stories!" At that they believed us, because in their words, that was too crazy to be made up.

Ah, yes. I was the goody-two-shoes who lived at home during college because I didn't like the idea of living with people up at all hours (my brain works best around 6 a.m.), many of whom favored drinking until they puked. I never have quite figured out how to do my hair with any sort of pizazz, apply make-up besides the very basics, or put together a wardrobe that doesn't look like it came off the clearance rack at Kohl's (hey, I like Kohl's).

So here we are, and I wonder how many of these things really matter...and if there's any area where I might be selling myself short. In some ways, I suppose it's never too late to learn. And the last thing I want to do is pass along some of my ignorance to my own kids.

Perhaps my 40th birthday should be more of an "enrichment" day. We'll start at a pool somewhere, where I'll finally learn how to dive. Then I'll invite some of my savvy friends over to give me a makeover. Someone will show my how to be confident enough to wear something other than jeans, sweatpants, and my hair in a bob. We'll end the day in a restaurant, where I'll learn which wine goes with what. And then I'll sign up for piano lessons, because I've always really wanted to play, rather than just picking out little songs by ear.

There's that balance, I think, between loving who you are and being confident enough to admit there's a lot you don't know and could maybe stand to learn. Like how to open a bottle of wine without showering yourself. Dan and I could both benefit from that lesson. I guess we should probably learn to like the taste of the stuff first.

Thursday, March 13, 2014


"Chloeeee! C'mon, smile!" I sat in front of my six-week-old, making faces like a crazed person, camera in hand.

"Sweetie? Look at mommy!" I cajoled. The girl could smile. She'd started a few weeks before. She just never seemed to smile for the camera.

"Googoogoo," I actually found myself saying. Nothing but stares. "Pleeease?" Nope.

As my newborn unknowingly refused to cooperate and flash me one of those light-up-her-whole-cute-little-face smiles, I realized I was feeling tense. She could do this! She had to show everyone how darned cute she is! I was in fact, kind of annoyed.

This bothered me.

I decided I had no choice but to ask myself, really ask myself, why? Why was I subtly asking my daughter to perform? Something about this seemed vaguely familiar. I had a flashback to when Anna was in preschool; my first-ever conference with her teacher. I was looking forward to it. I have to admit a tiny part of me was waiting for her teacher to start gushing over what a smart, cute, funny, etc. little girl she was.

Instead she told me that Anna was "hard to figure out." This was (and is) of course true. She's a wonderful kid, but she's never been the teacher's pet, most popular kid in class type. That day I sat there with the three-year-old preschool teacher, I had a sense that she liked my girl well enough, but that perhaps she wasn't one of her special favorites.

I realized how much that bothered me. And for the first time I realized how I had often as a child only felt good about myself by being the studious, accommodating, quiet, helpful one. I spent a lot of time working to earn praise, to earn my worth, without even realizing it. That day with the teacher I could see that a part of me wanted to help Anna do or be something to get that same kind of attention from her teachers. I wanted to do that, when really I just needed to love my daughter for who she was.

I looked at daughter #2 and sighed. "Chloe," I said knowing of course that the words were for me just as much as for her. "It's okay if you don't smile. You don't have to perform. I love you just the way you are." Just speaking it out loud felt freeing, felt like a salve. Suddenly, I was speaking to myself. And I was knowing the way God speaks to me and looks at me.

There was another reason I wanted Chloe to smile: the cute photo it would make that I could share with others. Such is life in a Facebook-driven world. We post the best versions of ourselves, of our lives. It's easy to believe that everyone else is more beautiful; everyone else's kids are super-cute; everyone's taking an awesome vacation. We can edit ourselves into perfect little boxes, until we start to believe there's no value in the ugly; the uncomfortable; the messy...the unsmiling.

I thought of some of those pictures I prefer to remain hidden, particularly those from my awkward phase. I think of the way I cringe when I see them. Photos like this:
This is not a Facebook photo. This is a Seventh Grade Has Not Been Kind to Me photo. I've flipped right past it in photo albums for years.

Today, I stop and make myself see. Today I remember that the way I need to love my children, wholly and completely, in every phase, with every qualm and quirk and fault, is the way I need to love me.

Because I too am loved.

Monday, March 10, 2014

The Extraordinary Friend

When I was little, like many kids I had an imaginary friend. Actually, I had a gaggle of imaginary friends. There were Cha-Chow and Chee-Chow (don't ask me how I came up with those names) and Amy, Pamy, and Tamy. In typical fashion, I liked to blame them for my wrongdoings. I'll never forget the day my uncle called pretending to be one of them. That totally blew my four-year-old mind. I remember a part of me thinking, But you're pretend! And another thinking, Well, maybe you're not!

Anna had imaginary friends from a very early age. First there were Sarah and Fishy, but I'm not sure if those count because they were actually her hands, which she'd make talk, kind of like puppets. Then there were the dwarfs (as in Snow White). I don't know how she came up with that one, because I'm not even sure she'd heard the fairy tale. There were Jamie and Naney, and there was Tulip. Anna went so overboard with Tulip she actually created a scrapbook for her complete with drawings of the two of them doing various activities together. Tulip had long straight brown hair, and for awhile Anna called her "my best friend."

I wasn't surprised that Ethan didn't say a word about an imaginary friend for the longest time. This is a boy who, honestly, struggles with imagination. He prefers what's right in front of him and has been challenged at times with envisioning something that hasn't existed first in real life. For awhile, he surprised me by coming up with names for his hands just like Anna did (albeit about three years older than when she came up with the idea). He called them Tico and Petey, and mostly they would have competitions with each other, like who could hit the most golf balls with a screwdriver in the tub (one of Ethan's bizarre games; it's kind of his version of pinball -- when I think about it, it's actually quite imaginative!).

Then, just in the past week, he has started talking about Mouse. Why the name Mouse? Who knows. Mouse, depending on when you ask him, is either seven years old or "older than God."

In typical Ethan fashion, Mouse doesn't exist to serve as a best friend, or to take the blame if Ethan does something wrong. No. Mouse has joined us to play Stratego and other games with Ethan when no one else is available.

"Me and Mouse are going to play now," he'll say if I tell him I can't play at the moment. I'll hear a murmur of conversation between the two of them, and then Ethan usually wants me to come over and admire the way he's set up his pieces, and critique the way Mouse has done his.

"Mouse always has bad strategies when we play Stratego," Ethan said matter-of-factly the other day. No surprise -- he's beaten Mouse every time they've played. Imagine that. Somehow, even if Mouse gets close to eeking out a win, Ethan manages to make a move to defeat him.

So far Ethan and Mouse have also played bowling and Go Fish. I'm glad Mouse has served as a great coping mechanism during these days when it's really hard for us to just drop everything and play with Ethan all the time.

The other day Anna and I tried to get a few more details about Mouse out of Ethan. "What's his last name?" Anna asked.

"I don't know," Ethan replied.

"Well, what does he look like?" I wondered aloud.

"Mom, I don't know that because he's an extraordinary friend," Ethan protested.

"Do you mean imaginary?" I asked, trying to stifle a giggle.

"Yeah, he's an imaginary friend," he said, annoyed. "I haven't thought of what he looks like."

Of course. For Ethan, coming up with the details of his imaginary friend is a bit like work. Imaginary, extraordinary. Maybe he had the word right after all. Little by little, in his own way and in his own time, Ethan does things we didn't think he'd do. Like have an imaginary friend.

Extraordinary, indeed.

Thursday, March 6, 2014

Now I Get It

Lately I've realized there's nothing like parenthood to make you more forgiving -- of not only yourself, but your own parents as well. You could say I've been chewing on some pretty big bites of the proverbial humble pie.

In my mind's eye, I can see it: circa 1987. At the time our family attended New England's version of a mega church. I was about 13. My parents both served on the church's worship team -- my dad on drums; my mom played flute and sang. Every Tuesday night they went out for band rehearsal and left me in charge of my brothers. Every single Tuesday night I seethed with resentment. Aside from getting to watch a trifecta of my favorite shows (Who's the Boss/Growing Pains/Moonlighting) in peace, Tuesday nights stunk. I felt like I was drafted and forced "on duty" while my brother Nate could do whatever he wanted. I didn't WANT to be stuck trying to keep an eye on Andy's antics. I wanted to be free to do whatever I wanted. Of course. I was 13.

For years this went on, until the church collapsed in a spectacularly horrific fashion worthy of a Lifetime original movie. Many of us who were teens at the time grew quite jaded and cynical with "religion" and the mess the older generation had made. Around that time it seemed to be all the rage to talk about how Baby Boomers were self-centered and shallow, had fallen prey to greed and were all about appearances -- to me that applied to church as well, and even the worship team.

They just wanted to be recognized and put on a show, I remember thinking. That's why I was always left babysitting. I was tired of phonies and wished I could say how I really felt. In retrospect some of my feelings were very legitimate. I should have been able to speak my mind, and share my feelings about watching Andy in particular so much. My parents know that now. It was a different time and they were different people.

But there was so much I didn't know. There was so much I didn't think of then.

I didn't think about the way my parents had both had a passion for music in high school. My dad had made it to the "All state" then "All New England" competitions and was one of the best drummers in the region. He was a member of several bands (one released a few records even); they traveled to Holland to play at one point. My mom dreamed of going to music school until a bad audition and a sadistically insulting band teacher led her to cave in to fear. My mom is incredibly smart; certainly smarter than I am. She dropped out of college to have me.

I didn't think about the way at one point music had been such a big part of their lives...yet there they were, 15 years removed from high school, living in a small apartment trying to scrape together money to pay the bills, my dad working various odd jobs and my mom mostly at home trying to handle Andy and his various challenging behaviors.

I didn't think about what my mom might have been thinking while hauling endless basket after basket of laundry to the laundromat and scrubbing up the neverending messes we all (but especially Andy) made -- or what was going through her head when she'd pull out her flute and start playing in the midst of an especially challenging day.

These days as I sit with a baby who likes to fuss a good amount of the time, I see just a little. On those moments when I don't feel like being needed, when I feel like using another part of my brain, when I'd love to be up there and singing, I think I finally know. I know that Christians like to throw around clichés like "It's not what I do, it's who I am" or "I find my identity in Christ," but there is still something special about doing that thing you know you were meant to do.

I know that those nights my parents left the house to practice, they were, in those moments, no longer The Parents of an Autistic Child. They weren't just "working class people making ends meet." They were worshippers. They were in their element. They were doing what they were called to do; they were getting a little taste again of those days when they were young before time and insecurities and children and life led them to the more responsible and yes, sometimes less "fulfilling" choices.

In those moments I see my parents, younger than I am now, and want to whisper "go." Take a break from these sometimes confining walls. Go. Get lost in worship. Be who you were called to be. Even if it's just for a little while. Even if it's just to get the strength to come back home and hold your head up until you have a chance to do it again.

Monday, March 3, 2014

Ethan's Favorite Thing in the World...At Least This Month

Please welcome the latest obsession in our house, or at least with a certain 6-year-old:

Meet Stratego, a game I'd never heard of until meeting Dan. Apparently he played it a lot as a kid, and wanted to introduce it to me once we were married (which is kind of funny, because normally Dan can't stand board games). Stratego is a kind of Battleship-like war game -- picture army guys of various rankings rather than ships -- and the object is to capture the other side's flag and avoid bombs. As is typical with all games except those involving words, Dan beat me soundly at Stratego again and again and again, until at one point I became so enraged (this is embarrassing to admit) that I actually threw the board and pieces after losing. That was, needless to say, the last time we played Stratego, although I'd like to think that 10 years later I've matured just a little (maybe?).

Anyway, Dan saw the game sitting there on the shelf and thought he'd teach it to Anna, only Ethan was even more interested. It's apparently for ages 8 and up, but he figured he'd give it a whirl with the boy, and voila! An obsession was born.

Ethan wants to play in the morning. He wants to play at night. He wants to play all weekend. He will play against himself if he has to. Most of all, he wants to beat dad, although that ain't happening anytime soon.

In the morning I hear, "Maybe daddy will play Stratego with me tonight." Or he wants to get in a game before school. Or he is reminiscing about where he placed his bombs the night before or planning where he'll hide his flag in the next game.

We'll be riding in the car and I'll hear from the back, "Last time you tried but I defeated your 10 with my 7." Or: "I bet you can't guess my strategy for the next game." I'm not quite sure he completely understands what the word strategy means, but he's heard Dan use it.

The cool thing about Stratego and autism is that it's a game that asks you to step into the other guy's mind and try to figure out what he's plotting. This kind of perspective-taking is great for Ethan.

The not-so-cool thing is, not surprisingly, that no one in the house wants to place the game as eagerly or as often as Mr. E.

Every time Ethan dabbles into another obsession we all start to feel a bit worn down after awhile. But I rarely can get truly annoyed, because nearly every time, I see shades of my younger self.

I remember discovering the Red Sox; collecting baseball cards and clipping articles that I read until they were dog-eared and memorized. I remember my Growing Pains/Kirk Cameron obsession, my scrapbook of magazine articles and photos and my list of every episode including ratings for each. I remember my crush on "Ron the trumpet player" and the way I secretly interviewed people to learn more about him and memorized his schedule and would devise ways to walk specific hallways at Central High so I would magically run into him at just the right moment.

Yeah, I can't fault him for the obsessiveness. I guess it's kind of in the genes. And so I will nod and smile when he takes out the board for the umpteenth time. Sometimes I'll play. Usually, sadly, I'll get beaten. We'll wait this thing out, knowing there will always be a new obsession lurking just around the bend, the moment this one begins to fade away.