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 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.