Thursday, September 22, 2016

The Power of Not Knowing

The day Ethan was diagnosed with autism, I had a brief urge to -- despite her kind, warm, thoughtful demeanor -- slap the developmental pediatrician across the face.

That sounds awful, I know. But until then, perhaps, I didn't know how much of control freak I truly was. I wanted, I desperately needed to be in control, and the thing was, she wouldn't tell me how this was all going to turn out.

I wanted to know, immediately: Would he talk more? Become conversational? Attend regular classes in school? Make friends? Find a job? Go to college? Get married?

And of course she couldn't tell me that. She could only speak in careful, measured terms about there being no way to know this early on what the future held, to bring him back in a year to evaluate, to get him started on therapies, and that he had some good early skills that kept him, at that time, out of the "severely autistic" category.

This infuriated me. I felt as if I was being given platitudes, when as I look back seven years later I see it was simple truth. Every child is different. Every strain of autism is different. Everyone responds differently to therapy. Some kids regress and others soar ahead. She didn't really know, and giving me any sort of detailed prediction would have been doing us all a disservice.

What every parent wants when they get a special needs diagnosis for their child is to know that this is all going to somehow work out.

What every parent wants is hope. I was going to title this "The Power of Hope," but realized that wasn't completely accurate. Yes, having no hope is a tragedy. One of the worst things you can do is rip hope away from a parent early on in a diagnosis.

But blind hope in these situations can be unhelpful as well. Hope with disregard to any facts can lead to false hope and living in denial. And desperate hope can lead down the path of "I must do everything in my power to cure my child."

No...hope isn't quite it. What I've found over time (and am learning every day, in all sorts of circumstances that have nothing to do with Ethan) is that there is actually power in not knowing how things are going to turn out. There is power in maybe.

Maybe my child isn't a typical kid...but maybe he can make great strides and surprise us.

Maybe my child will have trouble making friends...but maybe with effort we can help him learn to better relate to others and develop relationships.

Maybe my child will go to college...maybe he'll do something else completely amazing.

Maybe he won't amaze us but he'll be happy, and we'll learn more about ourselves than we ever thought possible. Maybe we'll discover more deeply an unconditional love not based on what our child ever accomplishes or doesn't accomplish.

Maybe we'll try this therapy or that plan and it will help...maybe there's something else. Maybe there's no one answer in this autism puzzle, but thousands upon thousands.

Maybe it's okay to admit we don't know what's going to happen, because really, whether our child has special needs or not, we were never fully in control anyway.

What I would whisper to my self of seven years ago, sitting in the hall outside Dr. Milanese's office as she flipped through papers and spoke in clinical terms, is to not give in to rage or desperation. By avoiding prognostication she was not playing a game or toying with me. She was admitting she is a doctor, yes, but human as well, and that autism is in no way a condition of absolutes, that it has never been about concrete numbers akin to cancer survival rates.

I would tell myself, I still tell myself, all the time, that to truly live you must live in now rather than taking up residence in the past or future.

I would tell parents who are new to this that, yes, unbelievably, there is power in not knowing. Not knowing relinquishes you from the weight of fixing everything. Not knowing allows you to simultaneously dream and grieve. Not knowing how this is all going to turn out forces you almost by default back into the present. The future is too murky to dabble in for long.

When their child is older, when they are years into a diagnosis and therapies and school and successes and dreams still not reached, this will all become more clear. There will be a time to plan; to fully accept. But the time is not in the doctor's office, five minutes into this whole thing.

No. That's the time to let go.

Thursday, September 15, 2016

Everyday Miracle

The other afternoon I looked out and saw Ethan running through our backyard with two other boys who live in neighboring houses. They were all chasing each other with giant sticks, yelling like wild men. I felt as if I was back in my childhood, back momentarily in a time when kids more readily ran through each other's yards, stayed out until twilight, and dirtied themselves in the woods. At one point (before my chiding) the hose came out. Then they were apparently throwing Pokeballs at each other. This went on for what had to be close to two hours.

In addition to the backyard shenanigans, Ethan has been begging me for weeks to set up playdates with two OTHER boys, close friends he's known since preschool. Now that school has started up again he tells me the sports on the playground have, too. Some days at recess he and a small group of boys find something to play. Right now it's football.

These are the moments I can never take for granted.

We all know the social piece is hard for people with autism. More than that, sometimes hanging out with other kids isn't something a kid on the spectrum wants to do. They're happy playing alone, and in those times it can be harder on the parents. Or worse, I think, is when a child really WANTS to play with others but doesn't have the skills to get along appropriately without being teased or misunderstood.

For a long time Ethan fell squarely in the category of not really caring about playing with other kids. While he didn't exhibit the kinds of behaviors that really make a kid stand out, he saw no problem with just going up and down a slide over and over again.

I learned you cannot make a child care about playing with other kids. Ethan, over time, learned that he really liked his two buddies from preschool. I'm sure it helped that both are a bit unflappable and forgiving...happy-go-lucky types that weren't about to throw in the towel because Ethan didn't always want to play THEIR game. For two solid years we spent many, many afternoons on the playground after school. And somewhere along the way we realized Ethan was a more social person than we had given him credit for. He just needed time. He needed us to stop pushing. And he needed playmates (and parents!) who could sometimes be as flexible as we often demanded him to be.

I don't know what friendships will look like, as he grows older. I don't know how the social piece will pan out. I just know that right now, there is no sweeter sound than hearing a gaggle of boys yelling and laughing. I look outside and feel incredibly blessed. When we moved into this neighborhood, almost all of the houses were filled with older people. Now there are boys his age right next to us. And I think -- how blessed has he been to be placed with two awesome little guys with two wonderful families, year after year, class after class in school? They're not always together, but even if they are not in class, they remain close, even as they've moved on to the third school since they've known each other.

Sometimes I just don't know what to say. So I will end with this, at the risk of appearing as if I'm wagging my finger and nagging. Forgive me, if I do. If you have a child who is running around your house with friends, making messes, inventing crazy games, taking stupid risks, and generally creating havoc, try to take a deep breath. You are living a sweet moment that may only appear that way in retrospect. You are witnessing a milestone that seems for many kids close to effortless -- making friends, making human connections -- but is actually yet another everyday miracle.

Thursday, September 8, 2016

When Your Kids Become Actual People

I don't write on this blog as often as I used to, and for that there are many reasons. We are no longer in the early days when things were changing so constantly for Ethan. There was always a new challenge, a new milestone, even a new therapy technique or idea. Now we're kind of staying the course, slow and steady, and while it's not all rainbows and butterflies, he's certainly doing very well. For that I am very thankful.

There's always just, well, life...and I guess I'd say priorities. I do my best writing in the early morning. But I like to save my devotional time for the early morning. And if I have freelance work, I often write then. Add that to the everyday business of marriage, three kids, and trying to connect with friends and fit in a few other hobbies when I can, and yeah, the blog gets pushed aside.

But the biggest reason ironically is one I never considered, when I started this blog. How I wish I did. When I began writing about Ethan's experiences almost seven years ago, I have to admit I was still very na├»ve about the internet, security, privacy, and sharing personal information online. Social media was just becoming a part of my life. I didn't even get a smart phone until about three or four years ago, and that was only because my other one died.

I would have done this all differently. I would have given Ethan an alias. You know, the whole "names have been changed to protect the innocent" deal. Or I wouldn't have shared publicly. I would have kept a journal just for me, for my family, to look back at sometime down the road. I guess what happened is that I stumbled upon some other autism blogs that I found to be very moving, and helpful. And I thought -- I'm a writer. Why don't I blog, too? It'll be a great outlet. Maybe I'll help someone else, or help someone else better understand Ethan.

And as with most human endeavors, there was that mixture of pure vs. more self-seeking motives. Who doesn't like to receive good feedback and validation?

For the longest time, I swept all of these feelings about what I was actually doing with my blog a little bit under the rug, but then something happened. My kids grew older. Anna started voicing clear opinions about, for example, not wanting me sharing most pictures of her on Facebook, and not wanting me broadcasting things she was going through to the unseen world. I do my best to respect that. Usually.

And now Ethan has started to do the same thing. Not only that, but Ethan now understands that he is a person with autism. He may not quite grasp all that entails, he may not see himself as someone who technically has "special needs," but still: he knows. And just as kids as they get older get more private about their own bodies ("Stay out! I'm changing!"), he has become a little more private about the quirky things that make him, him. They are not something he hides. But some are more like familiar jokes or discussions within our family. It's almost as if we have our own language, sometimes.

I know the "scripts" he likes to run through with Chloe, for example. He knows they are scripts but can't always explain why he likes them. He's not embarrassed about them -- yet more and more I'm feeling he IS wary of many people he doesn't know reading about them.

The time has come to tread more lightly.

I think I will continue to blog. I don't always write about Ethan, after all. There are more than enough mom-failures to share. And I think there is a way to continue writing about Ethan in a way that helps people to understand him and autism in general. It's just that I have to be more mindful. We all do. He is a person. He has feelings. He is never a punchline or a freak of nature. The same goes for living with a middle schooler! They may befuddle us sometimes, or humble us, or teach us, or frustrate us, but they are people who someday will be adults. They don't need their lives laid out for the world to see. It's hard to believe sometimes in the culture we live in, but some things truly are better left unsaid. Or unpublished.

Monday, August 29, 2016

New Season

The sun is setting earlier in the evenings now and the mornings have that dewy, cool, earthy smell that reminds me of a hundred early fall mornings when I tramped to school as a kid, metal lunchbox banging against my kneees.

We've gotten the school supplies and I've broken up 3,742 arguments about minutiae ("Anna is blocking the air conditioner vent!" "Ethan is doing that weird things in his throat to irritate me!").

We consumed what had to be more than 30 ice cream cones and jumped off the dock into cool Maine water twice that.

We aaaahed at sunsets and slapped at mosquitoes and licked melted marshmallows from our fingers.

I love, love, LOVE summer. And fall. Spring. And I even have a soft spot for winter, when it doesn't drag on endlessly. The seasons are beautiful. It's one of my favorite things about living in New England. The seasons set the pace of our lives; they clearly delineate times of change. They are especially sweet because they don't last.

Summer ending, school starting, leaves every parent I know with mixed emotions. We can't wait to usher them out the door and still want to hold them tight. I'm no exception. Whoever said, about parenting, that the days are long but the years are short was exceptionally wise. Sometimes the only way to get through a day when the house looks as if it's been bombed and everyone's crying is to remember to see life not always through a microscope but rather a telescope. These "long days" with kids and scrapes and tears and homework papers seem bigger than they really are, but the days that feel so far from our grasp, the college dorms and quieter homes and little people turned actual adults are just in front of us, not galaxies removed.

New is exciting. New is scary. This year Ethan is starting a new school. This is his first year as a child who is not a special education student in the school system. Anna is going into seventh grade. That is two years removed from high school. High school! Chloe just missed the cut-off for preschool this year. But this time a year from now she could be going to school every day, too. There are days, yes, that I wish she was. Then of course, there are moments when that seems frightfully close, and I want to keep her right by my side. The littlest.

Every year at this time I smile when someone on social media talks about how they can't believe their baby is an actual preschooler, or is feeling melancholy and amazed that they have a second grader and kindergartner. And while I'd like to think I'm so wise, smiling to myself that their kids really are still so small and they don't even see it, I know someone is looking at me lamenting that my oldest is in MIDDLE SCHOOL and smiling because they just sent their child off to college, or just watched them get married.

The school year starts and there are times I have to fight the fear that I'm sending my kids off to the wolves. There is so much out there! There are moments I won't see. There are times I can't be there to fight every battle; to clarify; to remind. Thinking about this too much can rip your heart out.

So I remember.

I remember the wonderful teachers they've been blessed to have, and a school system where staff want to move the world for you if you show you care, that you want to be involved in your child's education.

I remember that if I keep talking with my kids, if I keep listening, if I am discerning and wise, I will learn more and more about those moments and interactions I don't always see.

I remember I can fight for them and surround them with my prayers.

I remember that my kids are ultimately NOT mine, and I can give them back to God in those moments when I know I can't do everything right, can't know everything, can't protect them from everything.

It's something -- it's everything.

Then I can flip the calendar and feel that jittery excitement that comes with fresh notebooks and new outfits and crisp mornings. It's a new season. Time to plunge into the adventure.

Wednesday, August 24, 2016

Ethan's Battles

I know when it's about to begin because I hear the rummaging in one of our toy bins. Then, often, the cardboard block towers going up. There are grunts, groans, and various other guttural sounds. And the music, of course, that sounds a little bit like a movie sound track, during the fight scene.

Even Chloe knows. The other day as she came down the stairs and stopped to listen to what was happening in the playroom, she said matter-of-factly, "Ethan's doing a battle again."

Yes, Ethan and his battles, his epic fights between little superhero figurines or whatever he finds (this includes kitchen utensils like cheese graters or slotted spoons). They are the same almost every single time, and I absolutely love them.

When Ethan was little, he had an extremely difficult time with pretend play. This is no surprise, as it's often a challenge with people on the autism spectrum. But even compared to kids with autism, Ethan had very, very limited pretend play skills. We would try. I did, his therapists did, Anna did. We knew part of this was all about introducing ideas and possibilities. I've written about this before: the way we'd take out the farm and the animals, or build something very simple with Legos and put some people inside, or try to push around cars.

He just.didn' Not in that way. Ethan loved to run and jump and climb through tunnels; he loved music; he enjoyed books and puzzles; he was of course especially fond of anything with buttons or a screen. And over time I realized that while in many ways Ethan showed quite mild symptoms of autism, in these two respects: lack of play skills and an absolute inability to become interested in something that did not interest him, he was very much autistic.

We made our peace with that. We had to, because there is nothing worse than trying to make a child play and making a child miserable. It's just wrong. So while other boys his age built up huge arsenals of those Matchbox cars or trains or superhero guys with the little sets, Ethan did other things. He became interested in sports. He spent a lot of time listening to CDs and memorizing every song he'd sing at VBS (or Transiberian Orchestra!). He learned to read -- well. And of course he became very, very interested in video games.

About a year or two ago I heard some commotion in the other room. Specifically, I heard Ethan talking in other voices. The voices seemed to be threatening each other. When I peeked in I saw him on the floor with two little guys (from our meager selection of superheroes) in each hand. Then, they started killing each other.

Ethan's "battles" had begun. He was actually pretend playing, and none of us had said a word or given him a single suggestion.

Yes, Ethan's battles. They are always set to dramatic music that he sings in the background. They usually are repeating something he's seen in a video game or on TV -- but not always. They used to always involve the cardboard blocks somehow knocking over and killing someone -- but not anymore. It's taken a long time, but the plots are getting a little more elaborate. The battles sometimes take place outside, sometimes in the shower, and yes, they sometimes involve "unconventional" items like potato mashers.

Ethan has mixed emotions about his battle play. On the one hand, when he sees me watching him, he tells me he "needs his privacy" and to stop looking. But then sometimes he'll ask me to take a video of him and put it on Facebook.

I do not have mixed emotions about his battle play. I think it's awesome. I wasn't sure if I'd ever see him play like this. And while it's not exactly the way a typical kid would play, that's okay. I use to build the same Lego house over and over and then have it destroyed by a tornado (don't ask; guess I'm on the quirky side, too).

Kids on the spectrum are always learning. And I believe autistic adults are, too, because we all are. I'm done believing all of that stuff about our brains being more pliable only up to a certain age. You just never know. I'm still going to take piano lessons and I'm yeah, I'll say it, middle-aged. We are all always learning, and have the capacity to start doing something we never thought we'd do.

So battle on, Ethan. We're all excited to see what you discover next.

Sunday, August 14, 2016

Remembering in the Storms

Last night seemed very, very long.

We've been plagued by a stretch of oppressively hot, humid weather that's been punctuated by thunderstorms. Last night we got the worst of them so far. At first Chloe and Ethan (who has a robust fear of lightning and particularly power outages that might affect his time on Wii) slept through it. But when a crash shook our house I heard both of them stirring and saw Ethan cowering in bed, shielding his eyes. We're not used to bad storms here. Dan and I have an ongoing joke that thunderstorms seem to purposely miss our part of town, so the kids haven't had much practice coping with them.

This storm was decidedly NOT passing us by. I can't remember the last time I saw so much lightning. For a little while I just sat in the dark and watched night momentarily become day, over and over and over. Then I tried to urge them to go back to sleep.

"Mommy, mommy, mommy!" I heard from the hallway, where Chloe was standing forlornly, clutching a book. Dan caved first.

"Would you like to come in our bed?" he asked. She haphazardly climbed up next to us and sprawled out.

A few minutes later Ethan was standing over us. He in particular had not liked the way thunder had crashed, then the power had gone out for a half-second before surging back on. For a while he just hung out at the foot of the bed, his head half-slumping. I could see how tired he was.

"Do you want to come up?" I asked. I knew he was especially enjoying the coolness of the room, as the kids only had a fan, not an air conditioner and most of the house felt like a sauna.

He climbed to the foot of the bed. Before I knew it, he had managed to stretch out width-wise across the foot of the bed, just below our feet. He was out cold.

Chloe kept twisting and turning and performing near acrobatics. Was this what this girl always did in order to fall asleep? She kept mumbling about last week, and the thunder we'd encountered on top of a mountain in Maine. "The thunder is going to the mountain," she said, as it started to die down.

Somehow as time went by Dan and I were pushed to the far edges of the bed while Chloe took over a large section in the middle. Then the cat decided to hop on the bed and yowl in my ear, then look around for a spot.

My eyelids were drooping. I just wanted to sleep. With all of the feet and arms and elbows in my face an old song I remembered singing in grade school by John Denver started running through my head, over and over:

It'd hold eight kids, four hound dogs
And a piggy we stole from the shed
We didn't get much sleep but we had a lot of fun
On Grandma's feather bed

Yes, John Denver running through my head at midnight...that and I kept plunging in and out of a dream that involved, for some reason, moving to Seattle.

It was a fitful night's sleep, and I wanted to be annoyed. I wanted to be annoyed because of the heat and humidity and the kids bickering all week and about rarely getting a good night's sleep. I wanted to, but I couldn't. I was thinking of Jacob.

Jacob, my friend's son, has been fighting a very aggressive type of brain cancer. His parents have been so strong. His fight seems to be becoming more and more difficult.

His mom has been very diligent about providing many updates about what Jacob is going through on Facebook, these past four months. And I'll always remember -- I can't forget -- something she wrote early on, when all of this had just started.

She talked about how she remembered just a little while before Jacob was diagnosed, they were having a real issue with him climbing into his parents' bed at night. Maybe it was more than one kid; I'm not sure. She said they'd really been cracking down on that, that she had been concerned about it becoming a bad habit.

She was writing and looking back to the time when THAT had been her biggest concern. And she said how much she was longing to have that time back, how much she was looking forward to a time of just snuggling with her kids in bed. She reminded us to hold onto our kids, to enjoy them, to spend time with them, to remember those times that sometimes feel draining are also so precious.

I was thinking of Jacob.

And so I scrunched myself up to avoid falling off the bed and looked at their peaceful little selves as they slept, remembering they are fearfully and wonderfully made.

I remembered that a night of thunderstorms really would be over in just a blink.

And eventually, I fell asleep.

Please, friends...pray for Jacob and his family.

Saturday, July 30, 2016

The Playdate Conundrum

I need to start this post by just saying how much I love the word conundrum. Say it slowly...isn't it beautiful??

Okay, now that I've gotten that off my we are, smack dab in the middle of summer, and Ethan's been driving me up a wall begging for a playdate with a friend from school.

This in itself is awesome. He has a friend (several, actually)! He misses him! For years Ethan seemed to only tolerate kids other than Anna or his cousins. Okay, so he wants the friend to come over so they can play Wii together, but still.

We'll call him "Bob," since that's the random boy name Anna assigns to male creatures. Ethan's known Bob since kindergarten. He's attended his birthday parties. He was on Ethan's baseball team a few times. I've chatted with his mom, in that polite, classroom-moms-chatting sort of way.

For the last weeks of school, Ethan kept asking for Bob to come over, and I kept forgetting about it. When I saw Bob's mom at a school event I knew I HAD to get her contact information so I could set something up over the summer. She sheepishly admitted she wasn't really a computer person and the best way to reach her was to call. She gave me a number. I made sure to enter it into my phone instead of scribbling it on a random wrapper and losing it in my purse, the way I usually do.

Then we went away for two different weeks and Ethan had VBS and swimming lessons and finally this week he remembered Bob and insisted he HAD to have a playdate this week, that it wasn't fair, that Anna had seen her friends several times this summer.

I knew he was right. I said I'd call the next day.

"Why not now?" he demanded.

"It's past nine o'clock. I don't like to call people much past eight."

The next morning, he bounded down the stairs at 6 a.m. and wanted to know if I'd called yet.

"You can't call people this early. It's not polite." I realized we had to have a little chat about appropriate phone usage. More than that, we really need to sit down with Ethan and practice having him dial and talk on the phone.

That afternoon I dialed Bob's mom and listened as it went straight to voice mail. I left a message. Three minutes later, Ethan was at my side. "Did she call back yet?"

"Give it time, Eeth."

About hourly after that, Ethan asked if I'd heard anything. In school, as part of the social skills curriculum, they learn about a character named Rock Brain who gets "stuck" on certain ideas and can't let them go. I could see we'd entered Rock Brain territory. I also had no idea what to do about it.

"Why can't you call her back?" Ethan asked that evening.

"Ethan, we have to give her more time. I can't leave a message and just call back a few hours later. They might have been away this weekend. Maybe she doesn't check her voice-mail that often."

Once again, I realized we had delved into a whole new territory with unspoken rules. This was a doozy: how persistent to be when trying to make plans with someone? Stories of over-eager, well-meaning people on the spectrum who couldn't take no for an answer and were ridiculed danced in my mind. Anna voiced my concerns, in her own way:

"Ethan, you can't have mom keep calling that woman. It'll be weird. She'll think she's a stalker."

I tried to explain a little about why we shouldn't pester people non-stop when we're trying to reach them. I'm not sure how much sunk in, but the next morning, at 6 a.m., Ethan demanded: "You have to call her again!"

"Let's give it until the end of the day," I begged off, checking my phone again for any missed messages.

Throughout the day Ethan bemoaned the unfairness of Anna getting to see friends while he couldn't. I offered up other ideas. There was another friend he hadn't seen for a while -- what if they got together? Rock Brain wasn't having it. This certain friend knew how to play both of his favorite games on Wii, and that's what he wanted to do. That was it.

The following morning I left another message that went straight to voice-mail. I wondered: was this even the right number? There was no identifying info in the message. Had I even written the number down correctly? Where was this woman??

Another day dragged by. More interrogation by Ethan. No return calls.

"WHY can't you find her so I can play with him?!" Ethan wailed at one point. "With Anna you set up playdates so quickly."

"Well then tell your friend's mom to get into the 21st century and go online to interact with people!" I shouted back, exasperated.

"There's only one thing left to do. We're going to have to go to his house," Ethan said earnestly. I could just imagine that...Googling these people, attempting to figure out their address in town, scoping out the house and meandering to the front door. Ummm, no.

"There are other friends you can play with..." I started again.

"No! I really want to see HIM!"

"You can't be this inflexible and then be upset when it's not working out!!" I tried to explain, tired. Summers have a way of doing that to mothers.

I said it before and I'll say it again -- I'm so grateful he even wants to play with another kiddo. And we've been blessed to have two boys his age who live in the houses right next door. They just happen to be away right now, I think. And Ethan just happens to want to have one certain type of play with one certain person right now.

We are about to head up to Maine (in the words of Ethan: "Awww. Now I don't get to play Wii!!"). The quest for "Bob" will be temporarily suspended. But I'm pretty sure I know what's going to happen when we return, especially if Anna starts getting together with friends...

"...But what about MY playdate?"

"But his mom's not responding to my messages. What about another friend?"

"No. I only want THIS friend."

"...then you can't have a playdate."

"Then it's not fair!"

That's the conundrum. Ahhh, how I love that word.