Thursday, October 20, 2016

The Best Encore Performance Ever

Ethan, almost 3, with one of his therapists, Amber
Back when Ethan was almost exactly the age Chloe is now, before he started preschool and when he was still receiving therapy at home, we decided it would be a good idea to have him begin attending one of the playgroups held each morning in the town's schools. It would be good preparation for preschool, his therapists suggested, and one group was in the actual school he'd be attending, which would help familiarize him with it.

Yes, all of us thought this would be a great idea -- except Ethan. Ethan wanted nothing to do with the playgroup. The set-up was simple: moms or other caregivers and their babies and kids up to age 5 would come play for about a half-hour. Then everyone would pick up, have circle time, do a craft, eat a snack and leave.

Simple was not in our vocabulary those days. The first week it took 15 minutes to get him in the door. Once he finally inched inside, Ethan wanted nothing to do with the toys. The sink, microwave and light switches were much more appealing. When I'd convinced him he could NOT play with any of the above, he eased his stress by smushing his entire body onto the floor and pushing himself along, like a snake.

I looked at other parents actually able to converse while their kids occupied themselves, playing contentedly at a table with blocks, and getting up eagerly to go sit for circle time, and told myself I was never going to take small moments like that for granted again. This playgroup thing was HARD. I was drenched in sweat from the effort of helping him keep it together and not run out of the room.

The next week I came with reinforcements. One of Ethan's therapists, Amber, attended the group with us and was able to give me some pointers and help Ethan calm down a little. He was just ever-so-slightly better. Another godsend was the playgroup leader, "Ms. Betsy" (a legend in town to this day!). I'll never forget her own patience and understanding, from her warm smile and greetings to Ethan (which would often go ignored) to the little ways she tried to make him feel more at ease.

Every week for the two months leading up to him starting school went on like this. Playgroup was, well, work. Ethan paid no attention to other kids. He would rarely play with toys except for Play-Doh and puzzles. We got him to ease closer to the circle but never fully participate. Pushing his body against the floor (now understood as a definite sensory-seeking behavior) was still a preferred activity. I wondered how in the world he was going to do in school when he'd be ask to sit and focus for much longer.

Of course over time Ethan did start school and did do well. The next year when he switched to afternoon pre-K we returned to a few of the playgroups and he coped markedly better. By then I had a better handle on the areas where therapy and school had really helped him mature (self-regulation; focus) and which areas would most likely always be a struggle (creative play; initiating social interaction). Ethan went on to graduate from the playgroups and start full-time school, as all kids do, and we left them behind until Chloe and I began attending together last year.

One of the groups we attend regularly is at Ethan's new school this year, and when he found out that kids can earn tickets for good behavior and have a chance to read books during story time to the playgroup kids, he was on a mission. There was nothing he wanted to do more than read to his little sister.

Last week, less than two months into the school year, Ethan earned enough tickets to be a playgroup reader. He brought two books about pumpkins home to practice. I talked to him about remembering to turn the book around and read loudly so the littles ones could see and hear the story. And on Monday morning, Ethan arrived in the room with the books in hand and a big grin on his face.

And yes, I may be biased, but I have to say he did a pretty darned good job. An amazing job. I couldn't stop smiling. "Ms. Jen," the playgroup leader, mentioned that it was the first time she'd ever  had a child who'd once attended her playgroup come back and read to the littler ones. If someone had told me this six years ago as I held Ethan to keep him bolting out of the playgroup door, I have to admit: I'm not sure if I would have believed it. But here we are, by the grace of God.

Every once in a while I see other kids with similar struggles at playgroups and their moms or caregivers who are struggling with them...struggling to get their child to pay attention, not wreak havoc, and sit still enough to take part...or struggling to not feel frustrated or exhausted because their child isn't like a typical kid and this shouldn't be so hard. I am glad that my experiences with Ethan have fine-tuned my radar. If the opportunity is right, I do what I can to smile, to encourage, to let them know they are not alone. The toddler and preschool age is tough -- for all kids, and particularly ones on the spectrum. Sometimes it's very hard to believe your child's behavior is going to get any better, or any more calm. I know every story is not exactly like Ethan's. But I also know that with time and therapy many behaviors DO improve.

I try to remember to be Amber, the therapist (Where are you now? It's been years!), to be Betsey with the kind eyes. Someone might really need a dose of hope.

Ethan reading to the playgroup, feeling proud, and showing his sister some love

Friday, October 14, 2016

The Lost Art of Pranking

"Mamma, do we have a funnel anywhere in this house?"

We'd just finished dinner. Ethan's soccer practiced had been cancelled and he had a gleam in his eye. The request piqued my interest.

"Why do you want a funnel, Ethan?"

"Because I want to do a prank." He'd just been reading a Captain Underpants book. Don't ask, but apparently Captain Underpants is big with boys his age...and also provides plenty of fodder for kids interested in pranking others. I'm not so sure this is a good thing.

"We don't have a funnel anymore, Ethan. Or maybe there's one somewhere in the garage. You're not going out there to look for that now." It was almost dark.

I heard him rummaging around but was focused on cleaning up the dinner dishes. A few minutes later, he called me.

"Okay, I'm ready to do my prank!"

"Um, Eeth. Usually you don't TELL someone before doing a prank. It kind of ruins it."

He ignored me. "Walk past the closet door!"

"Okay," I sighed. "Here I am..."

He burst out of the door. Something wet that smelled exceedingly of fake pumpkin hit my face. Febreeze.

"Agggckkkkhhh!" I yelled. The small headache I'd already had grew exponentially. "What are you DOING?" I tried to calm down as he stood there looking at me serenly.

"Ethan, if you're going to do a prank like that, you can't spray something with chemicals in it in someone's face. That's dangerous. You have to spray water. Pranks are supposed to be harmless."

He put away the Febreeze and was suddenly outside in the growing darkness, looking for something.

"I wanna do that!" Chloe yelled. Chloe's always yelling that. A few minutes later he was back, with Chloe, in the bathroom with the door closed. Water was running. I had just cleaned the bathroom a few hours before.

"Guys, you need to get out of there!" I urged.

"But I'm doing my prank!" he yelled. A few minutes later, he commissioned me to walk by the closet again. This time he accosted me with two water guns...the big kinds, that release a whole gush of water.

"Hahahah, gotcha!" He grinned. I looked down at my clothes, still damp with Febreeze; now with water. In the bathroom the sink was half-full with clogged water and bits of dirt and mud from outside. My clean bathroom. Sigh...

"I wanna fill that with water!" Chloe was yelling.

"No, these are DONE for the night," I ordered, asking Ethan to put them back outside. When he got back in, I told him he needed to do his nightly reading. I was about done with pranks for the night.

"BUT...I was wondering. Do we have a long, thick rope?"

Here we go again. I shook my head.

"How about a short, thick rope?"

Anna appeared. "Let me help you Ethan. I know how frustrating it can be to have an idea but not be able to find the products around the house." Which I thought was quite charitable of her. Except I didn't even want to think about what he'd be using the rope for. She pulled out the proverbial "junk drawer" in the kitchen, which then almost crashed to the floor. Something is wrong with the drawer, most likely because so often children are digging in there looking for treasures like thick ropes.

Alas for Ethan, there was no rope to be found. He got working on something else in the other room. There was more suspicious silence. Silence and children never go together, unless they're reading.

"Mamma, come see my magic trick!" He held out his hand, hiding his thumb. "See my thumb is missing, and I will make it appear. Something was poking into his brand new shirt, under the sleeve. "See how this screw is going right through my hand..." He was pressing a very sharp screw right into his shirt.

"STOP!" I cried. "That's a brand new shirt!"

"AND HERE'S MY THUMB! IT APPEARED!" I think he was looking for applause. I tried to be enthusiastic while simultaneously cautioning him that he could not do tricks that involved sharp items.

"I'm painting, I'm painting," I heard from the other room. Chloe had searched through the craft supplies and was dolloping brown paint all over a paper. At least she had remembered to paint paper instead of the table. Somehow an incredible amount of paint was smeared into her hair.

Deep breaths. "Ethan, you need to do your reading. Now. Tricks are done for the night." A part of me felt bad. We ARE always encouraging him to leave his screens behind and try new things. But I was DONE.

Into the bath went Chloe, after I attempted to wash off some of the paint in the sink. Brown flecks danced with the dirt from the squirt guns. In the bath, too. Brown paint everywhere. My nice clean bathroom. Well, for two hours clean.

Ethan went to read. Chloe got clean. And I remembered why I always feel so tired once we hit about 7 or 8pm. And then I had to laugh.

Thursday, October 6, 2016

Now I Know What Happens When You Lose Your Child at Target

This incident happened a few weeks ago, so I've had a little time to, I guess you could say, recover.

This is what happened: After Ethan finished his soccer game two Saturdays ago we headed to Target (along with Chloe) to pick up a few things. Dan and Anna had other plans that morning.

After we walked in, Ethan clumping with his soccer cleats, and took our first turn towards toiletries, Ethan asked if he could go to the toy section. During the summer, I would let Ethan and Anna go off without me for a little while and head to that part of the store. I'd wind around and meet up with them a few minutes later. Ethan would always, and I mean always, head over to the WiiU console they have set up over there and start playing, with Anna just a few aisles away.

There have been a few times Anna hasn't been with us when Ethan asked to head over there on his own. With trepidation, I said yes -- and tried to make sure we hurried over there even more quickly than usual. The few times he'd done that, he was, of course, at the WiiU playing.

So Ethan headed off to the toy section, as I called out, "Don't leave that area!" It was the very last thing I said to him. You can see where this is going.

Chloe and I picked up some of the things we needed at the front of the store. Only, we were moving more slowly than usual, because now Chloe has decided she doesn't like to ride in the cart. She's pretty good in the store, but she is a dawdling toddler. As a result, getting back over to the toy section took a bit longer than I would have liked.

Side note: I realize there are some people who will not approve of my decision to leave Ethan alone in the store at any time. I understand that; it's one of many reasons I wasn't particularly eager to write this. But I also know that lately we've been trying to extend his "leash" (for lack of a better word) just a little. He's been great in supermarkets, finding food for me and promptly returning. We've had many talks about strangers or "tricky people" to the point of almost scaring him. And he's such a darned creature of habit with that WiiU I honestly didn't think letting him head over there was THAT big of a deal.

We walked up to the WiiU. He wasn't there. My immediate thought was to check the Minecraft aisle, his second-favorite spot. Nope. Empty. My heart did a little skip.

Next I checked all of the toy aisles, you know, in the department I told him not to leave. Nothing. My heart started beating faster. It's no secret I've struggled with anxiety for most of my life and have an extremely overactive imagination. I had to use every ounce of strength to slow my thoughts down for a moment and just THINK.

The bathroom. I wondered if he'd decided to walk down to the restrooms near the store's entrance. Normally he uses the family restroom. It was empty. I knocked on the door to the men's room and called his name. Nothing.

Well, maybe I missed him and he's already back at the toys, I told myself, walking faster and faster. Chloe kept protesting, so finally I plopped her into the cart. She started screaming as we pushed way faster than normal through the aisles. People were starting to stare.

The toy area was Ethan-less. I wondered if he went to look at the Halloween costumes, so we whizzed over there. Nope. I pushed randomly down aisles, calling him. Chloe joined in, too.

There are times when I wish I was one of those people who could maintain calm, give off a little chuckle, and just think, "Well, the kid's got to turn up SOMEWHERE around here."

But no. No, I am the one whose favorite book throughout high school was The Year Without Michael, an acclaimed young-adult novel about a 14-year-old boy who just disappeared one Sunday afternoon walking to his friend's house. They never found him.

Wouldn't you know, I had just come across that book, plunked high on a shelf, a few days before. The scenes ran through my head.

In retrospect what I should have done next was probably calm down and take a very careful walk through every aisle of the store, calling Ethan's name constantly. But no. I suddenly had The Year Without Michael drilled into my mind. Flyers on telephone polls. TV news. Police interviews.

This is what they call, in the behavioral health world, "all or nothing thinking." It's not healthy obviously. It's also a very hard habit to break. Especially if you've been doing it for nearly 40 years.

We pushed past about half of the store as I called Ethan with of course, no response. My next thought was to go to customer service and tell them I couldn't find my son. I figured (silly me!) that maybe they would overhead page him, tell him his mom was looking for him and to report to the front of the store or something.

"You can't find him?" the woman at the desk asked again, to be sure. Then she took out her walkie-talkie and started radioing someone. "Hey, we have a Code Yellow."

I have never seen the team members of Target act with such military precision. "Post someone at the doors!" I heard the radio crackle, and two employees appeared out of nowhere, blocking the exits. Several others took up posts all along the front of the store, near the Starbucks café and bathrooms.

"What does your son look like?" someone asked.

I can't believe this is happening, I thought, as I stuttered that he had dark blond hair and was wearing his soccer uniform. Cleats. I wondered if the police were going to appear. I saw myself being interviewed by the news ("And the last I saw of him, he was still wearing his soccer uniform"...).

Two other employees appeared and said they were going to comb the store for him. They took off after getting a description, and I stood there with Chloe and waited. I wondered if I should call Dan and tell him I lost our son. I wondered: could someone, some awful freak, could possibly have ushered him out of the store? Adam Walsh, Adam Walsh, ran over and over again in my head. Of course we are all familiar with the story of the little boy whisked away from a store when his mother turned her back, and later murdered. His father went on to launch the show America's Most Wanted.

This all sounds rather comical in the retelling, but I think most people realize that it's not at all. Not when you live it often. Not when you often know what you're supposed to do but your mind gallops off in another direction almost before you know what happened.

There is a Bible verse that talks about taking every thought captive and making them obedient to Christ. Basically it relates in a very real way to learning how to train your mind to not immediately chase down rabbit trails. It's the antithesis of "all or nothing thinking." It also is a discipline. And for some of us who have trails well-worn with bad habits, it's not as simple as quoting a Bible verse and going on your way. It's as hard as training for a marathon, in some respects. Sometimes anxiety really just does feel easier.

But I knew, in that moment. I had to stop. This was completely out of my control. I whispered a prayer, staring at the scores of people unloading carts, pushing their way through the aisles. I prayed and prayed because I knew there was nothing else I could DO. And then, for a few moments, something happened. The pounding of my heart and of my thoughts faded to something dull and almost unrecognizable. I felt it. Peace.

A few minutes later the two employees who'd taken off to search appeared in the distance, with Ethan walking between them. He was completely oblivious, meaning he had no idea how worried I was or that the store was up in arms looking for him. Where had he gone, by the way? To look for Minecraft books.

"But I told you not to leave that section!" I exclaimed.

"I thought the books WERE still in the toy section," he said, maybe because sometimes Anna went to look at them.

I thanked the Target team profusely, and everyone went back to their regularly scheduled Saturday morning.

But I was bothered. I felt provoked. My nerves felt jittery for hours after. And after catching a glimpse, even momentarily, of what it felt like to have peace in the midst of a storm, I knew I wanted more.

This is not so much a story about losing your child in Target. This is a story about working on overcoming anxiety...or maybe, learning how to better respond to life's curveballs.

I stepped back and realized: There were things I could have done better, but at least I was trying. Any parent would have had at least some level of freak-out.

This is what we must keep doing: we must be kind to ourselves, and we must keep trying. God knows: we're fallible; we're mere dust. I'm thankful, as the verse says, that we have a high priest that sympathizes with our weaknesses, because this one's a doozy.

But I'm not giving up.

Thursday, September 29, 2016

Little Victories

We were having a rough morning.

It all started when Ethan got extremely frustrated when we told him to turn off the WiiU the day before and lost his temper. Badly. Every time I see something like that happen, warning bells go off in my head. I think of all of the articles online that tell us that too many video games are turning our kids into monsters. Then I also think about the fact that Ethan isn't every kid and he may need them a little more than average. Finding that middle ground is always a dance.

But being out of control just can't be acceptable, because a lost temper at age 8 can morph into something much scarier at age 16. So Ethan knows if he has big trouble transitioning there will be consequences. The worst consequence of all, of course, is no Wii the next day -- which is exactly what had happened, and exactly why the next morning Ethan was having trouble getting out the door.

"I can't go to school. There's nothing good about this day," he kept telling me. He asked me if I'd change my mind. He insisted he had to have Wii or he couldn't get through the day. He begged, if we wouldn't give him Wii, if we would at least tell him the screensaver password for the computer. He's always trying to figure that out so he can sneak onto it when we're not looking.

The answer, of course, was no. The questions and demands kept coming, and we were starting to border on being late. These days Chloe and I walk Ethan down to a major intersection where Ethan crosses and heads over to the school. The process takes five minutes. If we could ever get out the door.

"Ethan, you're letting Rock Brain win," I told him, bringing up a character he's learned a lot about from the Social Thinking curriculum in social skills group. Part of the Social Thinking approach introduces a cast of characters (think superheroes and villains) called the Unthinkables that, according to Social Thinking's website, work to "distract, disengage, and otherwise detour children in their efforts to think about others and use their social thinking abilities." Rock Brain is one of them.

"And I'm Glassman," Ethan acknowledged quite willingly, referring to the guy who overreacts to situations. In Social Thinking, kids learn that they can be "SuperFlex," or the superhero in their minds that promotes self-regulation, social thinking, and related social skills. In kid terms: SuperFlex can beat those bad guys up.

And that's just the thing. I love the SuperFlex and Unthinkable concept. Ethan does, too. But when we start talking about it, I feel as if we're dancing a fine line. Now that he knows about his autism, I don't want to think that he's at war with the autism inside of him. But I also don't want him to think he's completely helpless when he starts feeling out of control.

It doesn't help when he at times uses his own dramatic language to describe what's going on. "I can't help it," he said one day. "I'm giving in to the dark side. I don't want to do the right thing."

What always seems to happen is to cajole him back. "Luke (Skywalker), Luke, don't give up! Don't give in!" I'll tell him. "You can win!" Or, when we're talking about the Unthinkables, I'll encourage him to fight back. He loves battles. He loves good vs. evil. He loves to feel like the hero, i.e., Superflex.

But again, there's that thing. Evil. The Dark Side. I always wonder how to approach this in a way other than that he's slaying his autism dragons. The best solution I can come up with is to talk about the way we ALL have Unthinkables. It's not an autism thing. It's a human thing. Some of us may struggle more than others. But we all need to work, in some way, on having more self control...or not getting distracted...or not bossing others around.

And some days, yeah, we just feel like giving in to our more base instincts.

"I'm not Ethan, I'm Rock Brain," he announced, slowly getting ready to head out the door. "Ethan's too weak to fight him." We trudged out the door and across the street.

I hated to see him head off to school upset. Isn't that the worst way to start the day with your kids?

"I'm sorry you're still Rock Brain," I told him. "Tell Ethan I still love him and I can't wait to see him later."

He worked on wiping his eyes. We had reached the place where he needed to cross.

He turned at the last minute. "Okay," he said slowly with a sigh. "I'm Ethan again!" Then he gave me a hug before he had to cross.

And even though I knew we would fight these battles all over again, that we all will fight these battles again and again and again, there was no denying: that morning, we'd had a victory.

For reference, these are the original Unthinkables:

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 naïve 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.