Wednesday, October 4, 2017

Ethan vs....the Dryer?

Years ago Dan and I used to watch a show called "Obsessed" about people who struggled with obsessive compulsive disorder. The show fascinated me. Here were people whose lives had been literally taken over by what would seem almost nonsensical to an outside observer. There was the woman who had to check that the stove was off. All the time. The other woman who had to brush and floss her teeth countless times throughout the day or she literally started to break down. And most memorably - the man who HAD to continually rub his hands together to "wipe off the evil" if he happened to spot an El Camino (that old car/pick-up truck-looking hybrid) drive by. He was in tears, trembling, when the therapist wouldn't let him. He thought he'd be cursed.

The whole point of treating people with OCD on the show was to do something called "exposures" where they would gradually be exposed to the feeling of NOT being able to perform a compulsive act, and learn to cope with that anxiety spike for longer and longer periods of time, until they effectively defeated the compulsion. This wasn't the only answer of course (I'm sure medication and therapy were also major players) but this was the part that stuck in my mind.

We have a little bit of OCD going on in our house. I don't say that facetiously. It's fairly well accepted that there is some overlap between autism and obsessive compulsive disorder. At the same time, I'm learning unfortunately Dan and I most certainly are not psychiatrists.

I've written before about Ethan's fear of buzzers. He's conquered many of them. He no longer runs away from the game Simon or episodes of "Family Feud" on TV. He learned to cope with the buzzer his art teacher had in class for when kids started acting out. So he's made some great strides, but now we have a new nemesis: the dryer.

In some respects, I get this. Our dryer (like many) makes a loud buzz when it's done. One day it buzzed when I was right next to it and not expecting it, and I jumped a mile. So in theory I understand why he doesn't like the dryer. But Ethan has taken this to a whole new level -- and we may have accidentally made things worse.

The dryer fear started a few months ago. I noticed Ethan was often asking if the dryer was running or when a load was going to be done. He didn't want to go in certain rooms (above the basement) if the dryer was running. Then I caught him outside hiding when the dryer was about to buzz. He refused to go into the basement if the dryer was running. When we found out recently that Ethan was willing to go to the bathroom OUTSIDE rather than use the bathrooms while the dryer was running, we felt this had gone too far.

That's when I thought of that show, and of exposures. I had a thought: why not MAKE Ethan wait at the top of the stairs for the dyer to go off? We weren't going to surprise him or startle him on purpose. We weren't going to make him go right up to it. But why not gently force him to be exposed to that sound, where he would then realize it wasn't so bad after all?

And so we embarked on what would turn out to be a mighty struggle. I didn't realize how deep the fear had woven itself. Ethan was petrified and in tears. Chloe and Anna wondered what in the world we were doing. "No, not the dryer!" Ethan was yelling while I was yelling, "We're not hurting him, really!" to his sisters. After what seemed like an eternity the darned thing buzzed for literally 1.5 seconds and we were done. I thought for sure we might have diffused at least a little of the fear.

Umm, no.

If anything, we'd made things worse. Ethan starting asking more than ever about the state of the dryer. In retrospect, we moved too fast with the exposure. We should've let him cover his ears. Or allowed him to be even further away.

A few days later Ethan was sure he'd gotten his revenge, because lo and behold, the dryer BROKE for the first time in about 10 years. And when it broke, it buzzed for an extra long time. Thankfully, he wasn't home, but I told him about it when he got home from school, and his eyes got wide. He wanted to know how many seconds the dryer had buzzed, what it sounded like, and if I could hear it from every room. "This is because of what you tried to do the other night!" he laughed with glee, but it was all short-lived. Our friendly local handyman came and fixed the dryer two days later.

Ethan was resigned when he heard the news. But he perked up when I told him the way the guy had purposely made the dryer buzz to test things out, when we were both standing right next to it -- and I hated it. Ethan seemed to take great pleasure in knowing it had scared me.

Yes, I'm empathetic -- but I know Ethan can't live life controlled by the dryer. The other day I found him outside before school, stressed because he knew it was going to go off. I wondered what in the world we should do as a next step.

That evening the dryer was running, and Ethan really wanted to play Monopoly (it's hard to get people in our house to play Monopoly, the game that never ends). Maybe this is going to sound cruel, but I decided to use it as a bargaining chip.

"I'll play Monopoly with you, if you will stay right here at the dining room table when the dryer goes off," I told him.

He was good with that. Only as the time grew closer, Ethan became increasingly more agitated and trying to block his ears or run out of the house. I felt bad for him. He reminded me of the people on the show, like the man sweating bullets and pacing because he couldn't do his ritual after seeing the El Camino. I also felt angry, seeing him all torn up like this. We were NOT going to let the dryer win.

Dan found some videos of dryers buzzing on YouTube (yes, you truly CAN find almost anything on YouTube). He played one as we were waiting for our actual buzzer and Ethan was fascinated. I was, too - first, because this video had the world's longest dryer buzz (whoever designed this Kenmore model dryer, it was pure evil!). And also, I realized from the comments that there are a lot of people out there that have a fear of the dryer buzz.

Watching Ethan watch YouTube reminded us that it's not just the noise -- the problem with the dryer buzzing from the basement was the not knowing when it was going to happen. It was like the stress of playing that game Perfection, with all of the yellow, tiny, shape pieces, just waiting for the timer to be up and for the shapes to pop.

The question will remain: how to deal with not just annoying sounds, but the anticipation, the not knowing exactly when they will appear?

I think we're going to have to take it one sound at a time.

As for the dryer, it went off that night, and while I barely heard it, Ethan said his whole body jumped inside. He may have struggled, but he did it. Maybe next time, we'll make him use the bathroom while the dryer is running - but allow him to cover his ears.

Ethan thinks we need to throw in the towel and find a dryer that doesn't buzz when its cycle is done. And so the other night we were back on YouTube, watching videos of dryers that end by playing a song. He's holding out hope we'll get one someday. I told him he better not sabotage the dryer to speed up the process.

I'm confident -- we will win this dryer war. Then onto the next battle.































Sunday, September 17, 2017

Full Disclosure

Recently out in the social media world (for me, Facebook) I've posted a number of pictures of different places we've visited this summer (mainly day trips). This is primarily because I don't print photos anymore. Facebook is my photo album, which is probably not a great thing. But it's where I'm at right now. If I can click and my memories are saved in a few seconds, I'm good.

Every time I share photos, especially recently, I get lots of feedback about all of the fun and exciting things we do as a family. "You really get around!" or "You think of so many fun things to do!" people will say. And I've started to feel a little uncomfortable, as if somehow I've set my family up as if we're staring in a little show: "The Whittemores Take New England!"

Another post recently was about Ethan and school. It's true: Ethan's teacher DID call to say what a great job he's been doing. It's also true that I muttered something about "wishing he showed that kind of behavior at home." I included that in the post, because really I was posting about the irony of having the teacher gush over a child who looked nothing like the child we often see at home, particularly first thing in the morning. But I think that point got lost. A number of people were kind enough to say things about how awesome Ethan is and what a great mom I am. And I started to squirm.

I know this has been talked about A LOT lately. And I know people aren't stupid. Most of us are well aware that the world, the life people present on social media, is not the whole story. We paint the best picture of ourselves. We edit and enhance. But despite all of that, I still feel this need for full disclosure...for the story behind the story.

Here's one, for starters.




This is Ethan's first day of soccer. The sun is shining, birds are singing; he's fresh and ready to go. This is Ethan's fourth year playing soccer. And things have gotten better. But they're not always easy. I don't have an After picture of that day. If I did, it would show Ethan flailing around on the ground, crying after the game. I give him credit. He held himself together during the game. And he waited until most people were out of sight. Then he couldn't hold it in any more. It IS frustrating to lose 1-0 to a team after trying really, really hard. And for someone who has trouble regulating emotions, it's even harder. We were the last people to leave the field last week, and this week, too (another tough loss). But this week he pulled himself together a little more quickly. Progress.

This picture of Chloe walking on a trail in Maine does NOT bring back memories of one of our fond family walks in the tranquil, mysterious Maine woods. This "hike" was a joke! We drove miles with Anna crying in the back because she'd accidentally scalded herself with hot water (long story). Once we determined we could, indeed, go on a little hike rather than the ER, we ended up here. Only I was looking for a different place and didn't realize until we'd paid almost $20 to get into some kind of state park. The nature center was closed and the only other thing to do rather than swim in frigid waters was hike this trail. So we did, only to realize within three seconds that the woods were filled with a massive infestation of the blood-thirstiest mosquitos I have EVER encountered. This peaceful nature walk was pure torture. And of course -- we'd forgotten bug spray. Everyone was swatting at themselves, Chloe was developing almost an allergic reaction to all the bites, kids were whining, and by the time we neared the trail's end we were all almost running to ESCAPE the woods.


Speaking of Maine: this is another thing I hear from people a lot. They say how they would love to have a cabin in the woods on a lake and how incredible it must be. They are right. It is incredible. It's lovely. It's also something I've grown up with my entire life and it would not be everyone's cup of tea. Why? You must know: our amazing family cabin is also the oldest one on our lake (100+ years) and has no running water or indoor plumbing. And due to the lay of the land, it is very difficult to ever install plumbing. So, it is what it is. Views like this are absolutely true. So is the fact that we have to boil water to wash dishes. I still love it!


We went on this fun day trip up a mountain recently on a ski lift. We've also been blessed to go to an indoor water park earlier this year and will head to Maine for a weekend soon. These trips are special because Dan is coming with us. Some people don't know that many of the adventures I've taken have been just me and the kids...and sometimes my parents. Dan's work schedule with two jobs including his own business make it difficult to get away. We've not been away for a week's vacation for over a year, all together. We have to catch these times whenever we can.

Sometimes online, on a Sunday after I was scheduled to sing and had a wonderful time at church, I will post messages and thank people and gush about the church services that morning or people will write to me and we all have a wonderful time encouraging each other. There is nothing so wrong about this. I DO feel incredibly blessed to serve with such a great group of people. I love to sing and share my gift with God and others. But for every time I write and gush and thank others and say thanks in return, there are a hundred insecurities I've had to fight that day, that morning, that week. I know I'm not a professional, and my voice is not top-notch. It's not about performance but still the fight goes on to quell the voice that says you were too this or not enough that or will never be able to do this or that.

You can't be honest about insecurity, online. You risk sounding like a downer, or that you're fishing for compliments. But sometimes, for others' sake, we NEED to be.

And this picture -- Anna's first day of homeschooling. Doesn't her hair look cool? She is all smiles and I posted about how this was a first day home treat, and it was. It was also a I'm not sure what I'm doing and I don't want my teen to hate me treat. Three weeks in, she likes homeschooling -- kind of. There are things she misses and there are things I don't know how to change or improve for her. There are friends out there she hasn't found yet and I just keep praying they're found. In the picture, she is smiling, and in my posts, I am speaking of the bright side...but this was a hard, hard summer full of many tears. This has been a time of fighting regrets, praying for wisdom, choosing faith versus fear, and letting go of control.

I know this is how it is for everyone. There is the post; the tweet. There is the story that can't be summed up in a paragraph or captured by a picture. There is the hurt you share with those you love in real life, carefully concealed from this virtual world not unlike a magazine where everything is glossier and shinier and summed up succinctly.

Our lives are messy, and I'm not saying anything we don't already know. But sometimes, that's the side we need to show.












Tuesday, September 5, 2017

Finding the Best (Not Perfect) Option

The calendar has flipped to September, Halloween and (dare I say it?) Christmas items are stocked on store shelves, and last week we sent two kids off to school...and one to school at home.

Yes. It's almost shocking to admit it, but we are homeschooling Anna this year.

Why do I say shocking? I have nothing against homeschooling. I know many, many homeschooling parents. Many of them are natural born teachers...the type of people who seem infinitely curious and love thinking of projects and crafts and new way to explore subjects. That's not me. I do, however, still love the feeling of cracking open brand new school books. And, I'm willing. That's what we have to work with here.

But I need to back up. Way up. People homeschool for many reasons. The educational choices we make for our kids reflect our values. Sometimes, our fears. Our desires to meet their individual needs.

As a kid, I had an eclectic mix of schooling. My Christian upbringing played key a role in this. I had an on and off mix of Christian and public school education. There were pros and cons to each. I didn't know any homeschoolers back then. Even in Christian circles, homeschooling was kind of "out there;" sort of earthy-crunchy.

Looking back at my education, I've always known there were very real drawbacks and benefits to both public and Christian school. My Christian education was sometimes sorely lacking. Some curriculums were weak; extracurricular activities were nearly nonexistent. And one school's forms of punishment and approach to the Bible may have done more to harm kids' faith than help it. Likewise my public school experience had drawbacks. Classes were taught from a worldview that sometimes conflicted with my faith. There were times the atmosphere was close to scary. Kids were exceedingly cruel. Worst was the feeling I sometimes had that my teachers were lost, hopeless, and unable to help me through some bullying situations.

All of these things swirled in my mind when Anna was little and we had to make a decision about her schooling. Dan had grown up in public schools and didn't feel as strongly about the issue as I did. But after hearing horror stories from a friend who at the time taught at an elementary school in town, I felt fairly strongly -- we would start Anna in Christian school. It helped that we had a school just down the street. And so she began pre-K and continued there through elementary school.

Then Ethan came along, and things were very different. Having an autism diagnosis meant, at least at the beginning, Anna's school was not in the picture. Instead, the moment he turned three and graduated out of the Birth to 3 program, he fell under the auspices of the public school system and the special services he needed that they could provide.

So we started in the public school system, not by choice -- and in the process I discovered a really wonderful group of both teachers and parents. The schools weren't perfect. But we had many more good experiences than bad ones, and problems were always quickly addressed, and for the most part, rectified. Beyond that, one thing I loved about the public school was feeling like I was a part of the town. Anna's school had many out of towners and just wasn't the same. I would go to Ethan's school and see the same people I'd run into at the grocery store or the town green. Since Anna had never been involved in town sports, we'd lived in the area for 5 years, but I felt as if I knew no one. When Ethan started school, that changed.

Watching both of the kids go through school helped me see very clearly the different arguments that are out there in the Christian world and to better understand each side. Yes, our job is to raise our kids in our faith; to protect and nurture them. At the same time, Christians can't live inside a walled fortress. We have to be careful to not develop an "us vs. them" mentality; to think that if we just sanitize our kids from all corruption, everything will be fine. There must be room to be a part of a community, to shine God's light and love in our everyday encounters.

Ethan went on through public school, and Anna went to Christian school until we realized her school was closing for the upper grades and it would be best to start her in public school right at the beginning of middle school when everyone else was new, too. And so we did. And things went okay...for awhile.

I can't violate my 13-year-old's privacy by getting into details, but let's just say that by the end of this year for numbers of reasons we began to see that public school, at least at this time, was not working out well for Anna. And so we delved into our options, including homeschooling, and confronted all of the issues and assumptions that come with it.

In the process of research (and my connections with homeschooling families) I came to understand that the homeschooling world today is a far cry from what it might have been 30 years ago; that the internet is an amazing tool; and that there are so many resources and social opportunities out there for homeschooled kids. I also again realized that it isn't a perfect solution. That there will still be times when we may not be feeling as if Anna's needs are being met. And it is a juggle on my part, with the freelance work I do as well. But we've taken the plunge. So far, so good.

What does this mean for down the road? Will we continue to homeschool Anna? Will we find another private school or at some point return to public? What about Chloe and Ethan? I am not quite sure.

What I'm learning through all of this is something I've always believed, deep down, but have seen played out before my eyes. There is no perfect answer for the best way to help our kids. There's just the BEST option. And that can change -- from child to child, from year to year. We can't let ourselves get stuck in boxes. We also can't let ourselves become distracted by others' opinions and decisions. What works for one child or one family may not for another. We can't be ruled by fear but also can't bury our heads in the sand. We've got to entrust our kids to God but also take on responsibility for having them in the best environment for them in any given year.

We can plan, but we can also leave our options open. Never say "never"...and never say "always." We can learn to live with the truth that we can do everything we can as parents, and our kids will still make their own choices. But that doesn't mean we set them up to fail.

For those of us who like clear-cut paths and grand plans, this can be a little difficult. But this is life. So we jump in -- to this year. And learn to live in THIS moment: knowing that for any of our kids, it may look very different from the year after that one...or the next...or the next.

























Tuesday, August 22, 2017

Screens: An Epic Battle

Summer is wrapping up, and while I've enjoyed swimming, roller coaster riding, vacationing, and reading mysteries from the library when I get a spare moment, I am looking forward to fall. Yes, fall in New England is beautiful, and I can't wait for pumpkins and leaves and getting lost in corn mazes, but what I mean is that fall equals school and for Ethan, soccer. And that means we will get the smallest of breaks in this summer's Epic Battle for Screens.

Ethan is a great kid. And there isn't a moment that I don't realize our challenges could be much, more worse. That being said, his thirst for all things electronic only seems to grow stronger -- and we seem to always be walking a fine line between understanding and not discouraging this "hobby" while also encouraging him to at times disengage from fantasy and interact with the real world. I know there are many kids, typical or not so much, who have these same issues. With Ethan they just seem a little....exaggerated.

If left to his own devices, Ethan would most likely play on his WiiU, Kindle, or Nintendo DS at least eight hours a day. His games of choice right now are Minecraft, Zelda, and Metroid. When he plays, he loses all sense of time and anything else going around him. He usually forgets about eating or drinking. Time stops and several hours can feel like minutes. We use a timer but that's not enough. I have to warn him continually before the timer goes off because only one warning is not enough. He's so lost in the world he needs time to ease his way out.

Almost everything in our house seems to be structured around screens. Bad behavior means screens are taken away. Chores are usually done with the knowledge that if they're not, screens won't turn on. Our daily summer routine is somewhat fashioned around screen time. At first we were trying to break it up into morning and afternoon, but I found that as soon as Ethan starts on screens, he has trouble stopping only to go back later. It ends up setting a bad tone for the day. So now most of it has been contained to the afternoon.

But what if plans change? What if it's the weekend or we actually have some sort of special plans in the afternoon? This becomes a bone of contention. And to my non-autistic mind, this is what's most frustrating. We have been on excursions this summer to the beach, an amusement park, and a fair, for example, and if too much of the day gets eaten up, no matter how much fun we're having (or money mom and dad are spending!), Ethan will start to get depressed and anxious because he's afraid of missing out on the day's screen time. Autistic people like routine, I try to remind myself over and over. It's not always easy, when you've shelled out 100-plus bucks at an amusement park, and your child is crying because they want to go home and play a game they've played 100 times.

Of course we have talks about being grateful when we do special family outings and about learning to enjoy other activities.

We caution about learning to do other things now, because as he gets older and becomes a grown up he can't play screens all day. He will have actual responsibilities, and it's better if he learns early how to tear himself away for a little while.

We have tried to harness this love for electronics into something that might really be useful for him in the future, like learning coding, with minimal success. He doesn't really like to code or to do something "practical." He wants to play his favorite Metroid game over and over.

The most difficult issue this summer has been Ethan's sneaking of screens. The boy is smart and he's getting smarter. And while he's not a great liar, he has sadly learned to lie or to try to cover his tracks. There have been many, many days this summer when I've rounded up the electronics in the house and hid them. Sometimes I think I'd love to purchase a big treasure chest, like the kind you'd see in a pirate movie. I'd throw everything in there and lock it up with a big golden key. Then it would at least make this process more interesting (and dramatic). Instead right now I'm hiding the Nintendo Switch in a filing cabinet and the WiiU game pad on top of the fridge and the Kindle and DS behind picture frames in our bedroom. It IS kind of like treasure hunting, when it's time to track this stuff down.

But we had to. We've found Ethan up in the night now several times, playing games (sometimes for hours). We've discovered him in the bathroom actually playing Mario Kart on the DS. We've caught him outside with his friend on the swing set watching videos on my phone.

The line between compassion and understanding and frustration is sometimes very thin. I KNOW his developmental pediatrician said he might need more screen time than the average person. I also know he HAS to have other interests and to learn how to at least sometimes stand up to perseverative thoughts that tell him he needs to play a game and he needs to play it now, and nothing else.

"I can't help it!" he often claims, and I don't want to just blow that off. Along with autism does often come some obsessive-compulsive tendencies. I don't think he's JUST being willful.

"It's just my autism!" he says, but we have to be mindful of letting him play that card all of the time.

"Ethan, we all have our struggles," I will tell him often. "It's not just you. And it's not impossible to overcome." Or at least improve. And it's so true. Maybe it's not screens. Maybe it's food. alcohol. Or shopping. Or worrying. I think most of us have that weak area that compels us; that's so hard to resist. I try to remember my failings, rather than just pounding my fist. These are real struggles, for all of us. Self-control. Self-discipline. Removing the thrill of instant gratification. This is the world we live in. But I know we don't have to let the wave completely sweep over us. We can take baby steps to stand against the tide.






















Friday, August 4, 2017

Career Plans

Ethan has decided that he wants to become a nurse.

Like most kids, we've had a number of iterations when it comes to Ethan's future career path.

First he really wanted to be someone who works on power lines. This went on until quite recently, when he started learning more about the power of electricity and the things (while unlikely) that can go wrong while fixing power lines. "Mom, I just don't think I want to do that," he confided. "It's not really safe."

The drawbridge operator phase went on for quite some time as well. I'm not sure why that faded, except that maybe even Ethan's love for drawbridges couldn't override the fact that sitting all day and waiting to push a bridge up or down just didn't sound that interesting.

For a while we were pushing the idea of being a video game designer (why not take advantage of that screen addiction, right?) and he was on board. But then one day when I looked up what it took to be a game designer, and he learned most of the big companies are on the west coast, he soured on the idea. "That's too far away," he said earnestly. "I'd miss everyone."

So recently Ethan has jumped on board with the nurse idea. This evolved after several visits to the doctor's office for poison ivy that really wreaked havoc with him, and a nasty virus. Ethan specifically wants to be a pediatric nurse: the one that gives shots and tests for strep.

"Are you sure about that?" I asked him. "You HATE those things."

"I know, but I would be the one doing them," he announced smugly. I think this whole nurse thing may be sort of a revenge fantasy. Or at least a way of fantasizing about the day when HE has the authority to make kids do things rather than the other way around.

"I'll tell them about getting their blood checked, and I get to be the one to enter their symptoms into the computer, too," he announced. More screens. Bonus points!

The other day he asked me how much nurses make a year. We figured out for some nurses, it amounted to hundreds of dollars a day.

"That's a lot of money!" he exclaimed, dollar signs flashing in his eyes.

"Yes, but remember, you have bills, too...mortgage, car insurance, electricity, and so on." His face fell. "Why?? Why do we have to pay so much?" he complained. The indignation reminded me of the day I first found out about social security being deducted from my paycheck. Or about excise tax.

He was apparently still thinking about the prospect of bills the other day when we were outside. "So mamma," he said from the swing set. "Why don't you tell me about insurance?"

Anyway, the promise of thousands of dollars a year and administering shots to sullen children is still alluring.

"I can't wait," he said happily yesterday. "I can't wait to be a nurse and give shots and get my money." Then he got serious. "Mamma, what do I say when they interview me for my nurse job so they'll hire me?"

"Well, you just act very confident, and tell them you'll work hard and do your best. And Ethan?" I hated to do this. "I know it's hard, but you should try to remember to look them in the eye. Sometimes other people don't understand if you answer a question and don't look them in the eye. They think you're trying to hide something."

"BUT" -- I didn't want to stress him out. "You really don't need to think about all of this now. Right now you should just be focused on being a kid. Do you know what career plans I had when I was nine?"

"What?"

"None." I may have been a worrier and a planner, but even I wasn't trying to map out my life and plan job interviews at that age.

"Just have fun and learn," I told him. I'm not sure if he's going to listen. I'm not sure how long this nurse fixation is going to last. But I like that he's thinking about it. That's what kids should do -- maybe not worry about how to plot out their lives, but be allowed to dream.


























Sunday, July 23, 2017

What To Do When Your Child is Diagnosed

It's hard to believe, but we're quickly coming up on eight years since Ethan was diagnosed with autism. When I think of the tantrumming toddler with dirty blonde curls in that small interview room, compared to my gabby 9-year-old playing video games in the other room, the growth seems hard to believe.

Having a child diagnosed with a special need like autism can be overwhelming. I don't pretend to have all of the answers. But when I look back and think about it, here are a few simple things I wish someone would have told me.

1. Stop and take a deep breath.

It sounds so simple. It's not. Everything is coming at you. What's ABA mean? How many hours of therapy will my child need? Will he ever talk? How do I get a referral? What's an IEP? When will he stop acting that way? What if my insurance doesn't approve? The list goes on and on. I can remember having a pile of papers shoved at me in the developmental pediatrician's office. While I did appreciate getting some kind of written resources, it also felt like too much all at once. The pediatrician was talking but I almost felt as if we were under water. I wasn't completely processing all of her words. And I remember staring at this booklet they'd given me about autism, and it had this hokey drawing on the front of a kid lying on the floor spinning the wheels of a toy train. That picture infuriated me. I felt as if they were mocking kids with autism, treating it in such a cartoonish, clichéd way. I actually wanted to tear the brochure to shreds.

Bottom line is -- there is an influx of information and emotion, and you have to know that it's okay to stop and take time to process. You will hear all of this panic about young children's brains being malleable and you will feel as if you MUST get them as much therapy as possible, as quickly as possible, or all hope is lost, and valuable brain cells are dying and opportunities are being lost....but, STOP. Just for a bit. To gather yourself, your strength, and your support network.

2. Work on accepting that you cannot predict your child's future. Your child's therapists, doctors, and teachers can't, either.

This again sounds obvious but really, it's not. I can't tell you how strong the craving is once they tell you your child has autism. If you get through the acceptance part, the next step is usually, "Okay, but what will that mean for my child?" Only, it is very, very hard to predict. Ethan's developmental pediatrician said this from the start and again, I felt infuriated. Why? Really, it comes down to our love for control and distaste for the unknown. And of course, because we want our kids to succeed. We don't want them to hurt. We want to do something to make this all better.

The best you can do is do your best for your child in this present moment. Give them what they need right now. Yes, therapy at a young age is usually a very good thing. Therapy tailored to the child's personality and individual needs is best. But beyond that -- sometimes what they need is to be a kid. Remember there will be times when the focus should be on them having fun, enjoying what they like to enjoy, rather than trying to "fix" every undesirable behavior.

So many of us want numbers and statistics, and there aren't so many clear ones when it comes to autism, because there is no "one" autism. It presents in so many different ways. Some kids are mild with their behaviors and then regress. Others make huge progress. Some move on a very slowly improving trajectory. There are very few people who "lose" their autism diagnosis. Most were probably not diagnosed correctly in the first place. It's not impossible, just unlikely. There are also very few people who don't make significant gains in communication, social skills, and other milestones. So work on giving your child what they need...but also working on living with the unknown.

3. Focus on connecting.

It is very easy to get a diagnosis for your child and without meaning to, turn them into an assignment. When we work on connecting with them first before working on their behaviors or milestones, we are remember they are a child first. There are times I think we make demands on special needs kids that we don't even make on typical kids. It's very easy to see through the lens of their diagnosis, when really sometimes, they're just being kids.

I can remember talking to one of Ethan's therapists about the way the kids with autism are taught to look people in the eye and say hello. Yet if you watch any of the kids streaming down the hallways at school, if you greet them, you rarely get a classic "socially perfected" greeting. They're all over the place. Some aren't paying attention if you say hello. Some will answer without throwing a direct gaze your way. Sometimes without realizing we make demands on our kids that aren't expected from their typical counterparts.

This leads to why I am a fan of the Floortime method for approaching autism, which is based on following your child's lead and using that as a basis to connect with them first and building everything off that connection. That's not to say I am completely against ABA. I do believe the more severe the autism and particularly debilitating the behaviors, the more ABA may be a necessity. But whenever possible, and especially in everyday life, I love Floortime. Floortime means: if your child is obsessed with the string, you don't immediately take it away. You take joy in the string with them. You find a way to make a game out of the string. You are playfully obstructive with it to see if the child will try to connect with you to get it back. You step into their eyes for a moment and try to see the string the way they see it. You get creative. You meet them at their level and try to bring them along.

Again, this doesn't always work, depending on the behavior. But the philosophy is great -- see your child as a child first, who may have some "quirky" interests or ways of looking at the world. Love them. Connect with them. Then begin working with them.


The first days after receiving a diagnosis for your child can be hard. These are points that sound good in theory but are hard to put into practice at an emotional time. But once the emotions have settled, these can be helpful tools to pull out and do your best to apply, as you navigate a new kind of reality.












Monday, July 3, 2017

Empathy Overload



There's a scene in the movie Toy Story 2 in which the cowgirl doll, Jessie, heartbreakingly recounts how the girl who previously owned her slowly grew up over the years and lost interest in what was formerly her favorite toy. The doll ends up discarded under the bed, gathering dust, until the day the girl finds her and Jessie hopes against hope they will play together as they once did. Unfortunately, the girl throws her into a donations box and ends up abandoning Jessie on the side of the road.

That part of the movie had me openly weeping the first time I saw it. Both the second and third Toy Story movies have a way of doing that, don't they? These films follow the lives of what are actually inanimate objects, experiencing all sorts of heartache and joy. The toys come alive in such a way that after watching years ago Anna felt really bad for the My Little Ponies she'd shoved under her bed.

I don't think we'll be re-visiting the Toy Story movies anytime soon around here, because we are experiencing what I'd call "empathy overload" with Ethan -- and to say it's a little unconventional would be an understatement.

This is the thing: They say one of the hallmarks of autism (well, maybe not hallmark; more like a common trait) is difficulty with empathy (specifically defined as the ability to understand and share the feelings of another). But I will argue, as I have before, that sometimes the issue is not feeling the empathy -- it's feeling too much, and not knowing what to do with those feelings.

Ethan has gone through this phase lately that has progressively gotten more intense. It started with him getting rattled anytime I said "Awww." So if I suggested he wear a certain shirt, and he said no, and I replied, "Aww, I thought you liked that shirt" he would be bothered. A lot. He'd ask why I said "aww," and tell me how it made him feel bad, and bring it up before bedtime.

One incident like that in a day isn't such a big deal. But we've started to realize there are more moments like that throughout the day than you might realize. Especially if you're paying attention to other people, too. So Ethan started telling me he felt bad when someone couldn't get to the ball in gym class and was disappointed; or about something the teacher said; or something he saw on TV.

One evening at bedtime when he was falling asleep without using his pillow again I asked him why he never uses his pillow. Then he started to feel bad because he thought he had made me feel bad by not sleeping on the pillow, AND he felt bad for the pillow.

When he started saying he felt bad every time there was a choice to make, that one of the choices would be left out, I started to be concerned. Our days are filled with choices. Getting worked up about every single one could be crippling.

Thankfully, he's backed off that a little bit, but I'm still feeling bad about his feeling bad. Some nights before bed he's said his mind is full of all the things that happened during the day that made him sad: the ball that dropped, the moment I asked why he wasn't going to eat all of his chicken, the fan that broke that we'll now have to throw away.

We've had a lot of talks about this, and I usually reiterate the same points. I'll remind him that me or the other people that these things happen to are no longer sad or thinking about it (i.e. the dropped ball), so why should he? If it involves an inanimate object, like a toy running out of batteries, I remind him the toy doesn't have feelings. Movies and books sometimes make objects more real than they actually are, but really they are just objects without thoughts and feelings.

I can only imagine what watching one of the Toy Story movies would do to him in this state. Would he pull out the many toys he's ignored over the years, trying to give them all proper attention? I don't know.

Is some of this related to anxiety, or maybe the tendency for people on the spectrum to be rather obsessive or perseverate on small details? Maybe.

I think it most definitely has to do with developing a healthy dose of empathy, and that's a good thing. I don't want my child to start crying thinking he's made me upset by not using his pillow. But the idea that he's placing himself into my head, and trying to feel what I'm feeling, is an important milestone.

If you're autistic and your brain is wired a little differently, it would make sense that you learn and experience empathy a little differently. Maybe it's not baby steps and simple milestones building slowly over time. Maybe with Ethan it's an explosion of emotion that sometimes feels too hard to handle. Our job is, as always, is to help him navigate and come away with something useful he can carry with him always.



























Sunday, June 11, 2017

Seeing Stars


Not long ago, someone shared a photo on Facebook of a sky at night, over the ocean. I don't remember where it was taken (somewhere in the U.S.) but the picture took my breath away. I stared and stared, mesmerized.

There were so...many...stars.

The photo (even better than the one pictured here) was taken far from the influence of light and people. It captured the glory, the majesty, the beauty, the intricacy. The absolute grandness of what is out there.

I kept thinking that all of that is out there, all of the time. This was not doctored. This was not just a scenic spot in one far away place. All of that wonder is just beyond me, even here where I live, where each night I see just a sprinkling of stars in the sky due to the nearby lights of Hartford.

And I wondered: How would life be different if each night we could see all of the stars? Because I really believe it would be.

What would we do, how would we perceive life and our joys and heartaches if each evening we were reminded that we are part of something so much bigger? We are insignificant yet gloriously unique in this galaxy among countless galaxies.

Would we think more about our purpose? Would we be more likely to let the little things go? Would we be more grateful? Would we wonder a little bit more about eternity, about how we got here, and why?

I think so.

I wish we could all see the stars like this, always. There is something about looking beyond man-made things in this age of self. There is something humbling that I think we all need.

Back in 2001, the day after the September 11 attacks, the TV news was continuing to drone near my cubicle at work when my boss brought several of us roses. There had been a rose sale going on and she left bouquets on our desks. I came back from lunch and sat and just looked, as I had gazed at those stars in the picture. The television went on reporting no answers, just more horror, but for a moment, it faded away. I was stunned by the beauty. I got lost in it. I stared at the complexity of a rose, the way the petals wrap around and around. They were so beautiful, I wanted to cry. Part of me wanted to cry because no human hand had made that. They were evidence of an intricate design. They were order in the midst of chaos. They reminded me there was still beauty, when I couldn't see it; that there was a plan when everything seemed out of control.

We think we are so smart, so accomplished, so evolved in our thinking. But I love the site of creation because sometimes we need to feel small.

In these days of the selfie, maybe sometimes we can turn the camera around again. Outward. Upward. To set our focus on more weighty and more beautiful matters.

Oh, how I wish. I wish we could always see the stars.



















Thursday, June 1, 2017

Little, Beautiful Victories

Two or three years ago I noticed the mountain laurel bush in our front yard was barely blooming. Upon closer inspection, I realized a number of the leaves were yellowing and spotted.

Yard work and gardening are things I would love to be more skilled at and spend more time on. I try. But our yard could really use a complete overhaul that would cost thousands of dollars. And juggling being home with the kids with freelance work doesn't leave as much time for outdoor chores. But I do my best with limited time and knowledge.

The next year I took a look at the bush earlier on the spring and saw the real issue was this viney type of invasive plant that had grown up adjacent to the bush that was now attempting to take it over. I took out my shears and started cutting away...but before I could finish, life got in the way that day, and the next, and before I'd known it I didn't get back to the project. My beautiful mountain laurel looked more and more sickly.

So often the last few years I have felt as if I am fighting a losing battle with our yard. Wherever I look, invasive weeds seem to be taking over. I'm not sure how they got started. I only know that getting rid of them is extremely difficult. I will pull up vines and pricker-type bushes only to have them reappear. If I'm not extremely vigilant and we have stretch of rain I'll go outside and things are nearly back to the way they were. It's hard not to feel discouraged.

As I've pulled up prickers I've often had the thought that they are similar to some of the issues and conflicts we deal with in life. Just snipping off the surface does little. The only way to truly get rid of them is to remove the root. But sometimes roots go much deeper than you think. Sometimes you pull and pull but you don't get it all. Like a piece of tumor that was unreachable. They always come back. And sometimes, even when you get all of those weeds out, just the presence of empty soil with nothing else planted there is enough to invite the weeds to grow again fairly effortlessly.

This year very early on I noticed the evil vine suffocating my mountain laurel. Over several days I took to it furiously. There were some parts high up I could not reach -- but I managed to eliminate the root source. I hacked and hacked, feeling actually angry at what had happened to my poor bush. Nearly every leaf had at least some yellowing or spots. Some branches no longer had vegetation and were basically dead. I broke off the dead parts, not even knowing if I was supposed to. But I made sure to leave anything that showed even a little hint of life.

I took to this bush the best I could, and then I forgot about it for a little while. It wasn't until the other day, when I was outside in the afternoon and caught a glimpse of this:



"Hey, look!" I called to anyone who'd listen. "It's blooming! It's really blooming!" My kids thought I maybe had developed an over zealous case of spring giddiness. That's okay. No one else needed to understand.

Sometimes we all need a little reminder that our efforts to do the right thing, to work on the stuff we know we need to work on, are not in vain. "Do not be weary in well doing," the verse in Galatians says. But sometimes that's not so easy. Especially when nothing seems to change.

That's why my mountain laurel bush, which still is ensconced in part by an old, dead vine, is so beautiful this year. Sometimes a small victory can undeniably be one of the sweetest.

Friday, May 12, 2017

Addicted to Tragedy

"Mamma, I've noticed something," said Ethan as he was climbing into bed. "All of the people that assassinated other people have three names. It's like they're in a club or something."

I hadn't thought of that before, but the thought was rather strange...John Wilkes Booth, Lee Harvey Oswald, James Earl Ray. What was up with that?

But why were we talking about this at bedtime? Ethan's had tragedy on the mind lately. One reason is school. They're working on biographies and each kid has to choose a person to research and then give a talk to the class. Actually, I think they have to pretend to be that person. Ethan choose Martin Luther King Jr. He's always loved him and his story. In fact, whenever Ethan talks about him, it's in an affectionate, intimate way, as if he knew him. He calls him just Martin, and it's not meant disrespectfully at all. "Do you know what Martin was most best know for?" he'll ask, or "Do you know when he died?"

And that's just it. He enjoys reading about historical figures like Martin Luther King or Abraham Lincoln, but he keeps gravitating towards the fact that they were killed. Right now for homework he's reading The Day Lincoln was Shot. Then there are the Titanic books. I don't know what it is, but it seems most kids in elementary school hit this Titanic stage. For Anna and her friends it was either second or third grade. They used to play Titanic at recess, and pretend they were either going down with the ship or jumping into lifeboats.

What seems to most fascinate Ethan about all of these incidents is the number of events that had to work together to lead to disaster. "Why??" he'll ask me in anguish. "Why did Abraham Lincoln's bodyguard take the night off when he went to the theater? Why didn't he listen to the dream he had two weeks before about the president dying?"

I tell Ethan to try to focus on the amazing things these people did when they were alive rather than just their deaths, but lately it's falling on deaf ears. And I feel a little sheepish having these pep talks with him, because I used to be exactly.the.same.way.

I too went through a Titanic phase, and a truly autistic-like obsession with the JFK assassination. How many other ninth graders had their bedrooms piled with JFK books on assassination theories How many others were sitting in class on the 25th anniversary of his assassination looking at the clock and noting the exact moment he was shot? This is one of many reasons I swear I have some spectrummy genes in me, too.

Then there was Guideposts. For the uninitiated, Guideposts is this little inspirational magazine (I think it's still around, but who knows?). My grandmother used to get it and stored scores and scores of back issues in her closet off the dining room. The magazine in theory features stories about ordinary people or celebrities making it through some kind of trial, trauma or tragedy, and how their faith brought them through and brought them closer to God. Only, I tended to read these stories and focus only on the horrific tragedy. For years upon years, I would sit in Nonna's closet and read issue after issue of Guideposts. Just seeing something like this (a cover story I clearly remember, about a man who survived the Mount St. Helens eruption):


brings back the very real smell of mothballs from that closet and the muffled click as the pull-string light turned on. There were stories about people who lost their homes in tornadoes or wildfires or loved ones in plane crashes; the woman who watched most of her children die of a rare disease; the kid who fell out of the window and into a coma, and so on. Every one of these stories had some kind of uplifting ending that I for the most part cannot remember.

I have tried for years and years to figure out this obsession with tragedy, and I'm not much closer now. But to see Ethan start to turn down this path...I'm not 100 percent sure what to do. I know what NOT to do. We try to keep him away from upsetting news stories on TV. Or documentaries. Just like me, he'll be the first to want to watch something like, "The Day JFK Died." I'm trying not to indulge all of his tragedy talk. Meaning, we'll talk about it for a little bit, because it is interesting. But I'll try not to add too much fuel to the fire. And I'll attempt to throw out something interesting I've learned about the person he's learning about. With Martin Luther King, for example, I shared how not long ago I learned he had spent a summer up here when he was young, working in tobacco fields, and seeing the interactions here between blacks and whites helped in part shape him into the civil rights leader he would become.

But what I can't stop him from is that initial gravitation towards the melancholy. I don't know how one becomes un-melancholy. I can tell you there are very many times I wish I wasn't. I WISH I was someone who laughed all the time and didn't know the exact details of every plane that crashed on 9/11. I wish I had a way to wrap all of this up neatly here with a bow. But just as we can't rewrite history, we can't completely rewire some of our darker ways of thinking. We just don't need to indulge them.











Monday, May 1, 2017

Connect Four: Encouraging Flexibility

The other day Ethan asked if we could play a board game. I inwardly cringed when he selected Connect Four. I'm not a big fan. To me the game is glorified Tic Tac Toe. We have this special Red Sox vs. Yankees version and just looking at the NY logo on the little navy blue circles makes me cranky. Plus Ethan's as smart as a whip and often beats me.

Which leads me to my point. We sat down to play, and in my usual way of not really paying attention to detail, Ethan beat me twice before I realized the little bugger was setting up this certain pattern every single time and I was falling into his trap. The third time I started to put in a circle (thankfully, he lets me have the Red Sox-themed red circles) he didn't like where I was dropping it and tried to put up his hand to block me.

"What do you think you're doing?" I challenged him.

"Well...Ben is nicer than you! He lets me do that at school." Ben is one of his good buddies. They play sometimes during indoor recess.

"You're right, Ben is nicer than me," I said with a smile and made my move.

"Noooo! You can't do that. I had a strategy and you're ruining it!" he complained.

"Exactly," I replied.

As the game went on I observed how truly agitated he was that I had found him out and that he was going to have to devise another plan to win. As often happens, I realized how there are so many teachable moments sitting in front of us -- opportunities to take those lessons learned in social skills group and with the social thinking curriculum and apply them to everyday activities.

"Ethan, you're going to have to be more flexible. The old way's not going to work. You're going to have to come up with a new way to win." He hemmed and hawed, growled and groaned, but after a few minutes settled down and started thinking. Sure enough, once he focused and stopped being so hung up on his plans being changed, he was able to come up with a new strategy. He won the next game.

I just have to say it's kind of sad when you just KNOW your nine-year-old is smarter than you. I'm not just saying that. I always feel like I'm a relatively smart person until I'm around Ethan and Dan.

But smarts aren't everything. They're not nearly as much as you think. We've all heard about emotional intelligence in recent years. Never mind the fact that it's more important that my children be loving, kind and generous rather than simply smart. That aside, even if you have smarts you can fail spectacularly if you lack confidence, empathy, flexibility, and perseverance, to name just a few.

To bring it back down to Connect Four: winning means next to nothing if Ethan always wins the exact same way...if someone lets him win...if he has no idea how to adapt when someone figures out how to beat him...and if he doesn't know how to cope if he doesn't win.

Next time we play, maybe we'll do Battleship. The last time we played his idea was to put all the ships in the center right next to each other. This plan worked great until I figured it out and wiped out all of his ships one after the other.

Then he got mad and threw his ships across the room.

Yup. Another game, another lesson for another day.














Monday, April 24, 2017

Follow Through

I looked out the window one morning recently as the rain came down and saw our backyard strewn with toys. Again. Chloe's tricycle was getting wet. Every year, it seems, as the weather gets warmer I tell myself THIS will be the year the kids always put away all of their toys before they come inside for the night. But, here we are again.

Of course, children don't naturally think to pick up after themselves. Ever. So obviously a habit like that has to be learned, and practiced. Which brings me to the crux of the matter: follow through.

The more I think about it, the more I'm realizing follow through and consistency is probably one of my weakest parenting areas, yet it's critically important. Good habits are developed, not instinctive. Discipline comes through practice. Obedience is a less attractive option to your kids when they know you don't really mean what you say, anyway.

Sigh.

Follow through with your kids is a lot easier when you only have one. I suppose that's obvious. If you tell your little one to pick up all of her toys, and she doesn't, you have a little more time, energy and focus to stay with her and make sure she picks up all of the toys. You can do it hand over hand, if you have to. If you're a first time parent, this seems so draining, and tedious. But when you have other kids distracting you, vying for your attention, interrupting, and possibly fighting, it becomes much more difficult. Notice I didn't say impossible. That is the lie we buy into. This is, I think, why oldest children seem more disciplined and structured and the younger ones get away with murder. It's very easy to throw in the towel and say, "I'm just too tired to deal with this."

I've started reading (or actually listening to) a book called The Five-Second Rule. It's all about the way we're able to talk ourselves out of just about anything in five seconds or less. Our bodies truly aren't wired for discipline, for making the better choice, for denying ourselves what feels good in the immediate moment. She talks about how she's used a simple 5-second exercise of counting down like a rocket launch ("5, 4, 3, 2, 1...blast off!") to propel herself into doing something she really doesn't WANT to do. While I originally began listening to this for an extra push in the area of eating and exercise, it of course could apply to every area of life. Including the kids.

It's really easy to tell your kids they HAVE to do something. But what happens when they don't? The critical thing is not what you tell them to do, but what they actually end up doing. I recently told Anna now that theatre is done for the year it's time to pick up some additional chores at home, including cooking dinner for the family one night a week. Okay, cool. But it's not like she's going to do this on her own. How many times, after the initial requirement, have I just become rather blasé? Often a few weeks later, I'll say, "Oh yeah, we were going to have you do that...." Still, no follow through. This time, I said she needed to do her research on what she wanted to make, then write it down and hand it to me with the required ingredients before I go shopping. Yesterday I asked her again and she said she'd do it when she got home that night. Guess what? She didn't do it. So now she HAS to do it today, because I'm going shopping tomorrow.

If this all feels rather tedious, it's because it is. Which is why we avoid follow through. Or at least I do. But what are they learning, when we don't follow through about them following through? They're learning it's not important to follow through, of course.

Recently I had to volunteer to do something that I really didn't feel like doing. I had signed up, I knew I needed to be there, but I didn't WANT to be there. "Just don't go," Anna told me. Of course, that's always our default option. I told her I had to go because I said I'd be there and they were depending on me. And I hoped she was making a mental note that even parents sometimes really don't want to do something, but do it.

Follow through is especially difficult with Ethan and screen time. You know how people say if you're going to hand out a certain punishment to your kids, you have to be able to deal with the consequences of that punishment? So if you tell your kid they can't watch TV all day on a rainy day during summer vacation, what's your plan? How are YOU going to survive the punishment, when your child is nagging and whining at you all.day.long? This happens with us and Ethan all the time. Taking away screen time is really the most effective punishment, or consequence, we have for him. But we have to know what we're getting into. A day Ethan is not allowed screens can often be brutal. He doesn't want to get ready for school because "there's nothing to look forward to when I get home." There's crying. Maybe tantrumming. Lots of whining and saying he doesn't know what to do. Lots of trying to sneak the screens when we're not looking. Refusing to do homework. The list goes on and on.

Lately Ethan has taken to sneaking screen time and lying to us about it. The sneaking is bad enough; the lying is a path we really want to nip in the bud as much as possible. Dan caught him last week and took away his screen time the next day, but when I found out, I started to panic. Why? Because I knew he had a baseball game that evening, and how hard it would be to motivate him to put on his uniform and get him out the door if he had no screens that afternoon.

But: Fear of our kids' behavior can't stop us from following through. Maybe sometimes we have to make some adjustments or modifications, but still, we've got to do it. What's "cute" now won't be when they're a teenager, or working a job where they just don't "feel" like doing what the boss has told them to do. We've got to put in the time now, the investment now. Jut as we have to do with ourselves, when it comes to self-discipline.

I still have a LOT to learn about this. I really feel as if I'm just beginning. But awareness is the first step. Nike was right. Sometimes we have to grit our teeth, take a deep breath, and just do it.






















Saturday, April 1, 2017

Letting Boys Be Boys...Kind Of

I knew there was trouble when I glanced out the back door and saw Ethan attempting to climb up a large ladder (not opened correctly) he'd gotten from the garage, which was perched against a tree on our sloping hill in the backyard.

"STOP!!" I cried out. "That's completely unsafe!"

"But I HAVE to climb this tree!!" he insisted. The lower branches were a little too high for him to reach. And so he did, after I made him open the ladder correctly, and find a more level spot.

I call it compromise. I make attempts at this whole "free range kid" thing, but it's not completely for me. I don't think it's completely for Ethan, either. I know someone who regularly lets his son roam around the neighborhood, through people's backyards or back doors, and even in a patch of woods, and doesn't bat an eye. I turn my back for five minutes, and crazy things are happening without Ethan going anywhere.

People say this is what it's like, having boys. I wouldn't say I'm surprised. I always had this idea that maybe having a boy was would be like living in Charlotte's Web with Fern's older brother, Avery. Remember him? The one who toted around a BB gun, carried frogs in his pocket, and liked to poke all sorts of inappropriate things with sticks? Only this isn't 1948, so it's not quite like that, and Ethan's not going to roam around in an old barn (none within walking distance, although we do have a number of abandoned tobacco barns in town), or around town (stranger danger!). Our garage is dangerous enough.

Okay, so here's the thing. We're always telling him to get off the screens and get some fresh air. But apparently fresh air is boring. And Ethan happens to have a friend next door who like him needs excitement or a challenge.

Things started innocently enough. Well, not really. They started their own version of Poke-E-Ball that involved essentially pelting each other with all kinds of balls. Only they'd run around sometimes to the front and near our busy street, and balls would sometimes go into the street, and I'd find out after the fact they were running out there and getting them.

Okay, deep breath. They DO need to learn how to safely retrieve balls from the street.

Then the swing set challenge. At nine Ethan has essentially outgrown our swing set, particularly because it doesn't have monkey bars (that never crossed our mind, when we purchased it, unfortunately). He is bored with the swing set, but he enjoys using it if for new challenges with his friend. So, the minute they see each other, I'll hear something like, "Why don't you climb up the slide backwards to that board and hang upside from it?" Or "Let's try jumping off from the platform."

I hate to watch them like a hawk, but I also hate to hide out in the kitchen because I don't want to know what's going to happen next. It feels wrong to tell them to stop (Would Fern and Avery's parents have done that? We're wimps nowadays!) but the thought of someone getting hurt makes my own head hurt.

The swing set competitions were bad enough but they have evolved into a game of Let's Find the Most Dangerous Thing in the Garage and Fight with It. Thanks to Anna's input from a slumber party game she played years back, I caught them not long ago playing their own version of the Hunger Games, going after each other with different sections of a roof rake. They are often fighting with sticks. The sharper, pointier, more jagged edge, the better. I told them they had BETTER stay away from the axe.

Then there was the day recently when Ethan came across a sledge hammer and he and his friend decided to attack some stuff we have in our garage waiting to be carted away by whoever I finally getting around to call to remove it. There's an old toilet in there, and TV. I stepped outside and heard smashing sounds. Then I saw small bits of white porcelain on the ground and followed the trail to the garage, where they were gleefully smashing at the toilet and yelling, "TOILET DESTRUCTION!!" A very small part of me was kind of glad they had broken the thing down a bit so we could shove it into the trash can. Dan took the more parental view that someone was going to get hurt and they needed to stop.

I try, I really do. I try to be all relaxed and chill and let them do stuff. But then I think about my child or his friend breaking their foot with a sledgehammer or having a piece of porcelain fly up and permanently blind them, and I end up launching into the mom speech.

It didn't help. The next day I found them in the garage smashing the TV. I wondered just what Ethan's friend said to his parents when he walked in for dinner that evening  ("Their garage is a mess, but we helped smash some things into a million pieces!"). I wondered if I'd be getting a talking to soon. These are nice people. We are probably not a great influence.

There is a part of me of course that is very happy Ethan has a friend to play with and that, while they fight sometimes, they also have a lot of fun together. I just wonder what's next, and I wonder if there is anything they can come up with that's not violent or destructive.

A few weeks ago I peeked outside and saw Ethan again with the ladder, this time on our deck. I told him to go put it in the garage...only he made a detour heading back to the garage and set up the ladder under the sloping back roof of the garage. When I looked out there again, he and his friends were sitting on the garage roof, their legs dangling off the side.

"WHAT ARE YOU DOING??!!" was my predictable response.

"Mamma, we just needed to feel what it was like to be on the roof. I love the roof. You KNOW how I've been wanting to go on it." This is true. It all started when my Uncle Warren allowed him up on the roof of our camp when he was fixing something last summer. Ethan has become so enamored with the roof he even begged to be allowed on the roof on his birthday, as part of his birthday present.

"GET DOWN NOW!" I hissed, shooing at both of them. At dinner Ethan's friend would announce to his parents, "And today we climbed on Ethan's roof!...."

They slowly climbed down, with unmistakable looks of satisfaction on their faces. I couldn't blame them. The roof IS pretty cool. In fact, I seem to remember secretly climbing out one of the bedroom windows in my grandmother's house onto a roof below. The freedom! The view! And I was the biggest goody-two-shoes ever.

There is a side of me that enjoys all of this exploring...and another side that wonders how we will escape this unscathed. Ethan likes to brag that he has never broken a bone. And then he climbs the tree in front of our house, the one with weakening limbs, and every time decides he needs to climb a little bit higher. Last time he yelled out, "If I fell from here right now, would I DIE??"

Yeah...there have been lots of quickly muttered prayers lately.

I'm not sure I want to know what they'll come up with next.





















Thursday, March 23, 2017

Pondering the Mouse


Lately we've been toying with the idea of taking the plunge (with our wallets) and taking the kids to Disney World.

Oh Disney lovers, please don't hate me. I don't mind Disney. There just happens to be a long list of places I'd rather visit instead.

I know, I know, this is about the kids. And I am grateful to have the opportunity to spend time with my family and to be able to pull together the means to go somewhere. I would just prefer that somewhere be the red rock canyons of the southwest; a drive up the Pacific Coast highway in California; eating my way through Italy.

Disney? It's an awesome place. The customer service and attention to detail can't be beat. The creativity and innovation? Amazing. So what's the problem? Where to start? (Here I go, getting curmudgeonly)...

1) I'm not sure when or how it happened, but it seems as if over the years Disney has become something akin to both a religion and a rite of passage. "What? You HAVEN'T been to Disney yet?" kids will say to Anna, looking at her as if she's sprouted horns. Maybe it's because we live in suburban Connecticut, but is it weird to think not everyone can drop, say, $6,000 on a vacation, sometimes annually? When I was a kid, my grandmother, God bless her, would shake her head sadly at the fact that our family couldn't afford Disney World. "Maybe someday you'll get to go," she would say forlornly, which made me start to feel bad when until then I hadn't cared.

2) To continue on that point, I didn't get to Disney World until I was 18, and that was fine. I still had a great time. I didn't feel as if I'd missed out on an integral milestone of childhood. I actually appreciated being able to go on all of the rides, and knowing I would always remember the experience because I wasn't, say, 3 or 4 years old. So when someone says we HAVE to get to Disney because the kids are getting older, it's hard for me to get into panic mode. Then there's the fact that:

3) I am not and none of my kids are "into" princess or costumed character people. Yes, Anna (and now Chloe) sometimes dressed up like princesses and would watch Disney princess movies. No, they have never eaten, slept and breathed only princesses. We are also not Mickey, Minnie, Goofy, Donald Duck, etc. fanatics. Not that there's anything wrong with that. It's just not us. My kids tend to see Chuck E Cheese characters and back away. Except Ethan. He thinks they're kind of cool. Animatronics also have tended to make each of the kids nervous at various stages. Let's just say no one in our house is begging to breakfast with a bunch of characters.

4) The price. I guess I mean not the price as much as the price to do Disney the way people say Disney "should" be done. Most people I know these days fly there, stay at a resort, get the meal plan, book special events with characters, and so on. I understand the convenience of doing so. It's still a little hard to fathom when this kind of meticulously orchestrated trip was so different than the "budget" visits we took to Disney with our family. We drove there. All night. We stayed in the Orlando area in various versions of Econolodge motels. We did NOT dine in the parks if we absolutely had to but snuck in snacks and ate out locally each night. We didn't do all Disney all the time but also visited the Everglades, Cape Canaveral, the beach. And without all of the bells and whistles, we had an extraordinarily good time. In truth, my favorite part of going to Florida was driving there and seeing different states...my first palm tree...and the way the New England winter gloriously transformed into spring. Which leads me to:

5) I'm not the hugest fan of fabricated places. Shopping malls have kind of fallen out of fashion, but I've never liked them. Vegas? Shudder. Give me a mountain, a lake, or a beach. Or a small town main street, museum, or antique shop. Give me the real thing rather than a real cool version of the real thing. It's like Animal Kingdom, at Disney. I'd rather do an actual safari. I'd rather see a really cool giant tree than the Tree of Life. I'm kind of drilling the point home, I know. You've got it, you've got it.

I guess it's not so much that Disney World is a terrible place but that I would prefer we see it on our terms. That may end up being a little bit unconventional, the same way it was for me, growing up. Maybe we will do the long drive there to save money and retain some freedom. Maybe we won't book every experience there or go to the park every day. Maybe some days we just want to be able to enjoy a day at the pool, or the beach. Maybe we won't get the meal plan but will venture out to an all you can eat BBQ like "Sonny's" (I think it was called), quite possibly one of the messiest but most delicious indulgences I'd ever had up to that point. Maybe we won't see every nook and cranny of the parks but will take time to venture out and explore roadside attractions like GatorVille or Citrus World (these are probably not real places, but I imagine they could be). Maybe I don't want to ride the monorail but ride through the Everglades.

I guess I'm not so much of a Disney curmudgeon as just someone who really loves a travel experience that involves truly immersing yourself in a foreign location and seeing and tasting life the way the locals do. The creativity and imagination that is Disney is great -- but this other type of exploration is rewarding in its own grittier way. I hope we are able to show and teach the kids about both types of amazing.


Tuesday, March 7, 2017

It's Not About Winning or Losing...Except, It Kind of Is


So this year for the first time Ethan decided to play basketball. This has been a learning experience -- for all of us.

I may be a huge football and baseball fan, but basketball, eh, not so much. The last time I really remember watching it regularly was as a child when my dad would flip on Channel 38 from Boston to watch Larry Bird and Kevin McHale, so we're talking ancient history here. At that time I took little away from the game except that these men had scarily hairy armpits.

All those years ago I never really picked up the rules of the game (same for Dan), so watching Ethan play basketball has felt a little bit like flying blind. Maybe it's for the best. I can't be an annoying parent from the sidelines if I don't really know what he's supposed to be doing, right? Obviously, everyone knows (well, except Anna, who is completely and utterly sports-averse) that a basket is two points and that you can't run with the ball, you have to dribble. Other than that, I've been learning as I go -- and it doesn't help that in his league, they don't play by all the rules (no three-pointers or foul shots) and they kind of enforce others but not fully. Let's just say there's been a lot of hearing a whistle blow and having no idea why.

So we're learning, and we've also learned that Ethan is pretty good at basketball. As often seems to be the case, he's not the star of the team but one of the better players. And the fact that he never complains about going to a basketball practice tells me he likes playing.

As for his team? They're okay. Middle of the road. They seem to score about 12 points every game, which is about what every other team seems to score. Twelve points in 45 minutes. Yeah, we're not talking NBA here.

One day we were in a restaurant chatting about sports and I heard Ethan talking about a mantra all of the kids say because they've heard it so many times at school. "Mamma?" he said. "I don't like when they say it's not about winning or losing, it's about having fun." I'm not sure what precipitated this, but I knew where he was coming from. Every field day I'd attended, every class game I'd seen them play, I'd heard teachers say this. I feel as if somewhere along the way, the pendulum had swung from maybe over-zealous competition to a complete elimination of celebrating a win or lamenting a loss. That night I was feeling a little punchy.

"You know what, Eeth? I understand. Guess what? Sometimes it IS about winning and losing. It's about having fun and learning, too. But yes, it's okay to want to win." Didn't we just go crazy over the Patriots winning the Super Bowl? Didn't we seethe every time the Yankees beat the Red Sox? In all of Ethan's team sports, while they haven't emphasized win-loss records or keeping score, every kid kept track and of course celebrated a victory.

Ethan seemed surprised that I would at least halfway contradict a message he'd heard so many times. I tried not to sound indignant. "I just want you to know it's okay to try to win," I told him.

A few weeks later, we walked into the gym for basketball on Saturday morning and saw we were playing a team Ethan's friend from next door was on. There were also two kids from his class on the other side. It was a good game. It was a close game. Both teams were very evenly matched. It really could have gone either way, but in the last few seconds Ethan's team failed to score and the other team won by two points.

I could see Ethan's face crumple up. For the first time all year, he was struggling to keep it together. He's been so much better about this, but close games are hard. Especially close losses against friends. While everyone else gathered up their things, he was sitting on the floor of the gym, crying, head in his hands. The coach looked questioningly at me, probably for the first time realizing why I had given him a heads-up about Ethan's background. I never know if I should do this, but really it's for moments like the one we were having. "He's not hurt," I explained. "It was just such a close game..."

Somehow I managed to get him off the floor, while he continued to cry and people continued to ask what was wrong. Out in the hallway, I tried to reassure him. "It was a really, really close game. Anyone could have won."

"I DON'T CARE. It IS about winning. Winning is everything!" he shouted.

Ugh. I knew where this was coming from. In a second, I understood in part why the schools emphasize over and over that it's "just about having fun." Emotional regulation is such a valuable skill these days, and it seems to be lacking more than ever, in all of our kids. How in the world are they supposed to run a field day with not one but 10 kids in a class losing it over a loss?

"Ethan, it's not just about winning. Winning is great. But it IS also about learning and growing. You guys have gotten SO much better since you started. I'm so proud."

He calmed down a little, but not much. As it turns out, he was worried most of all about the boy from his class, who he felt was going to tease him on Monday for their loss. Then he turned on us. "You should have cheered more! Why did the other team have more fans?!"

"They had at least three more kids on their team than you guys did...there were more parents because of that."

"Well, why did they have more players? Then we couldn't rest ours! That's not fair!"

This went on for a while. Then he wanted me to buy him a treat to cheer him up, and I said no, since I didn't think it was a good idea to always try to solve every sadness with food.

By the time we got home, Ethan took some time in his room to calm down and finally put the game behind him. We all did, except I was left wondering how to best address this issue of winning and losing...because even though I wasn't thrilled with the meltdown, I still didn't want to let go of the message.

I still want him to know that it's okay to WANT to win. It may not be the only thing, but of course it's important. Such is the nature of sports and competition. I have no problem with my child being somewhat competitive and having an internal "drive" to do well. It's when the rigidity gets mixed in that we run into trouble.

There's not an easy answer to this one, but that's okay. I think it's more of a "learn as we go." Maybe we got a little too focused on winning last time, and need to turn the dial down just a little. But I refuse to turn it all the way off, because there will be times when he wins or loses, and there are a lot of big emotions that are going to come with it. It's better to learn to deal with them now rather than just convincing him it doesn't matter. Winning DOES matter...but sometimes it's our response or reaction after that win, or loss, that is most vitally important.



























Thursday, March 2, 2017

He's Calling the Shots

Ethan noticed an old slip of paper stuck to the refrigerator. It was a reminder for an appointment with Dr. Milanese, the developmental pediatrician, that we'd made but had cancelled last-minute.

"Why didn't I go to this appointment?" he asked impatiently. I was surprised. Attending doctor's appointments was rarely at the top of Ethan's (or most kids') priority lists.

"Well, I don't know..." I hedged. I couldn't quite explain why I'd cancelled the appointment, and I think it's because I'd be hard pressed to explain why we'd made the appointment in the first place.

When your kids are little, before, during and shortly after diagnosis, these meetings with the developmental pediatrician are essential. They really are the autism experts. Birth to 3 evaluators weren't too phased by his red flags, and neither was his pediatrician, but Dr. Milanese had him diagnosed in an hour.

Follow-up after a diagnosis, especially one that occurs when a child is very young, is critical. Children grow and change quickly, and sometimes (but not as often as people wish) a diagnosis is "fluid." Ethan was diagnosed at 22 months by the CARS (Child Autism Rating Scale) assessment, which is designed for kids age 2 and up. CARS scores range from 15 to 60, with scores between 38-60 indicating severe autism and scores between 30-37 reflecting mild to moderate autism. Scoring under 30 places a child off the autism spectrum (but undoubtedly with some autistic traits). Ethan first scored at the high end of moderate, close to severe. A year later (and the year after that) he scored in the mild category. Was that the result of therapy, or was the test initially not accurate due to how young he was? I'm convinced it was some of both.

But that was at the beginning. Once your child has scored on the autism spectrum three years in a row, it's a good bet he's probably staying there. So visiting with the developmental pediatrician becomes less about assessments and more about "checking in." We've done that once every year or two since Ethan was about 4. I enjoy talking to a professional and chatting about Ethan's progress. That being said, if she was to offer recommendations about therapies or other ideas to implement at school, for example, she doesn't have much clout, unfortunately. I can present the school with a report from the developmental pediatrician, and they can say, "thanks, but no thanks." There's nothing legal there. So our visits really become not much more than informal times to chat. And that bugs me a little, because all I can think is how many other parents may be stuck sitting on waiting lists, desperate to get in and have their child evaluated. Even Dr. Milanese, who has a fast-track kind of program to get toddlers in quickly, has typically a six-month waiting list. Why should we be taking up valuable time?

All of this is a very long way of explaining why I'd decided to just go ahead and cancel Ethan's appointment last year. But now he wasn't having it.

"I want to see her," he said firmly.

"Ummm...okay."

"What are we going to do there?" he asked. "Are there going to be shots?"

"No, Eeth. I told you this before. She's a special autism doctor. She's not going to check your heart and lungs or anything like that. She just talks to you."

"Well, you need to make that appointment." There was a pause. "I'm going to talk to her." Even though the last time we went, Chloe was maybe a year old, he seemed to have no recollection of her. I believe she gave him a game of Checkers.

I'm not sure if Ethan is insisting on this appointment because he can't stand breaking rules, and we had an appointment that we missed, so this is a wrong that must be righted...or if he really is curious. I would love to see him have a really good chat with Dr. Milanese, a doctor that's not going to use code words and pretend he doesn't know what autism is.

We did tell him he wasn't going to be able to trick Dr. Milanese. Even if he used all of his good eye contact and worked hard to chat with her, she would know about his autism. I don't think he's trying to convince her he's something he's not, though, because right now, he's good with autism.

I feel as if I've talked about this woman on and off on this blog for a number of years, sometimes grudgingly, and I have to set the record straight -- she's a really, really good autism doctor. And a kind person who has gone out of her way on numbers of occasions to talk/answer questions via email. Any frustration has been just displaced anger...maybe because there is always a little part of you that thinks, "Maybe THIS time she'll proclaim him off the spectrum," yet she will always point out something new-spectrummy that he does, however minor.

Over time I have learned that line between on and off the spectrum, those numbers just above and just under the CARS 30, represent an amazingly murky area. You can have a diagnosis and be less "quirky" than someone with one. There are many, many of us who reside somewhere in that gray area of almost-but-not-quite. It's okay to live there. Even if Dr. Milanese's job will always be to help people inch as close as possible to that "typical" line.

I don't quite know why we're going, or what we're going to do there, but Ethan wants to meet with the developmental pediatrician, so we're going to -- in November. I consider this perhaps his very first step in self-advocacy.