Monday, March 12, 2018

Losing, Winning & Learning

Everything was going so well at Ethan's last basketball game of the season, only then it wasn't.

They'd been ahead all game, until some kid on the other team made an amazing shot. Ethan had three chances to shoot...and ALMOST got a basket every time. The clock was ticking down. The kid on his team who had almost never made a foul shot got them within one point...and then someone made a dumb play that gave the ball away to the other team. Everyone was screaming. Kids and parents arriving early for the next game were standing on the sidelines yelling. Dan and I looked at each other, knowing where this was going.

At the buzzer Ethan was off on the other side of the gym, refusing to slap hands with the winning team. Then he was gone -- outside -- and Dan was after him with me not far behind. We found him crumpled into the pavement on the side of the building. He would not be consoled: he was screaming, flailing. Ethan was mad at the world, and I couldn't figure out for the life of me how to help him.

I hated that basketball was ending this way. All I could think is for all the time he spends in Social Skills group talking about expected behaviors and identifying emotions and challenges, how I wished in the actual moment he had more specific strategies to actually put to use.

I tried to tell him to take deep breaths. I threatened to take screens away if he didn't calm down. I attempted to give him perspective by asking him to think if a game loss was equivalent to say, someone dying. I told him someone would call the police if he didn't quiet down.

Everyone else on the team was driving to the pizza place for an end of the season party that I hadn't heard about because somehow, I wasn't receiving the coach's texts. That was also why we'd missed the practice the night before. To say we felt out of the loop -- in more ways than one -- wouldn't be lying.

After about 10 minutes we managed to get back to the car. I knew we wouldn't be going anywhere with the team, and not that it really mattered. Ethan didn't have any friends on the team and wasn't particularly attached to the coaches. While not being there wasn't a huge deal, I kept thinking about how many times, in ways much bigger than what we were dealing with, that autism can isolate families. A meltdown means leaving the party...or not making it to the gathering. One little change or "off" day or perceived wrong and suddenly -- poof! Plans disappear. Relationships die off. Connections don't happen.

A side note: if you know a family in a situation like this, don't let it happen. Go to them, if it's easier. Make accommodations. See what you can do to help. To the best of your ability, continue to be welcoming and inviting. Help families to feel a little less alone.

But in our case, I was thinking more about how to help our son -- because what's cute at three is inappropriate at 10 and could become downright dangerous at 15. He's not a violent person. He's a good kid. He just struggles at times with emotional regulation. We just want to know how to help him navigate those waters.

We tried doing a "post mortem" about everything later on, but Ethan wasn't into that. He was wrestling his sisters and dancing to music -- he didn't want to talk about what had triggered his feelings eight hours before. He did tell us one thing -- that everything was so much worse because he thought the whole game that they were going to win. And they lost by one measly point.

My mind flew back to Red Sox/Yankees in the playoffs, Game 7, 2003. The Yankees' Aaron Boone smashed an extra innings homeroom off Tim Wakefield to send the Yankees to the World Series. Gut punch. Utter frustration. Lack of control. I imagined watching that and being autistic, feelings welling up, emotions swirling over. I KNEW what he'd been feeling at the end of the game. I just wish I knew how to help him harness it a bit.

That night, as I was saying good night, I told him despite everything that had happened, we were proud of him, and I was thankful he was able to play. He might have not had a great season, but his skills DID improve -- and maybe he had taught others a few things along the way.

"You're an ambassador, Ethan," I said, before I even realized I was going to say it. "You're an ambassador for autism. Those coaches may have never had a child with autism play for them before. And those guys running the scoreboard? The ones I asked to not let it buzz soooo long and loud if they could because it bothered your ears? Maybe all of these people understand a little better. And the next time they meet someone with autism, maybe they'll be compassionate and have a better idea of the types of things you deal with."

I didn't want to act as if he had the whole world resting on his shoulders, but I thought he needed to know.

"When you tell us what's going on and why you feel the way you feel, it helps us understand autism better," I told him. "And it helps us understand a little bit more about people with autism who can't speak up for themselves, like Uncle Andy."

He liked this idea. I could see him perk up. He was listening intently. "God has an important purpose for your life," I told him. "Don't ever forget it."

And suddenly the sort of a mess of a day we'd had didn't seem so bad, in the grand scheme of things. No, we still don't have all of the answers to help him with controlling himself. As it is I need to check to make sure his social skills group hasn't slipped through the cracks again. But I am trying to follow my own advice. The bigger picture. Maybe he wasn't great at basketball or handling disappointment. Maybe just being there had been the important thing -- for not just him, but the people who coached him. For them to see autism in person -- not a stereotype, but as something that can sometimes simmer under the surface and then rear up at difficult times -- maybe that was invaluable. Maybe he will help other people make fewer assumptions and not just pass autism off as "bad parenting." Maybe he will help paint a clearer picture -- that autism may be Rain Main or someone rocking in a corner or it may be a child who just doesn't look you in the eye and has trouble paying attention if the buzzer's about to go off and melts down at a loss and won't shake the other teams' hands not because he's a brat but because he just feels too much, all at once.

At the end of that game, Ethan's team had a legitimate chance to win. Ethan was the weakest shooter on the team...yet the coaches kept him in the game. They knew how badly he wanted to score just one basket this season. They didn't send the subs in. They let him be out there until the very end. Ethan never scored and they lost and he cried, but most of all, THAT is what I will remember. They gave him a chance. They gambled and lost, but maybe...maybe they didn't lose after all. Maybe none of us did.

Monday, March 5, 2018

Just a Glimmer

We've had our share of fails when it comes to the kids and extra-curricular activities. Actually we've had mostly fails. With Anna alone we tried gymnastics, dance, Brownies, sewing, 4-H and now theatre. Thankfully, theatre has stuck. Ethan has only been interested in sports, and that alone has had its challenges. Until this year he's been fairly adamant about not trying anything else, and we haven't wanted to push it.

Don't get me wrong -- I am not a parent who is overly concerned about signing my kids up for activities. I don't worry so much about them being well-rounded or needing to know now what they want to be when they grow up. In our case, it's really a matter of asking them, at least once they're getting into upper elementary school, to try to do at least ONE thing that gets them out of the house and out from behind a screen.

With Ethan I'll admit there is a little douse of added concern involving areas of interest and how he might find something that would also help him get a job one day. I don't like having to think like this when he's 10, but I feel as if I have to. While we don't always need to be drilling it into his head, he needs to be practicing things like handling disappointment, eye contact, learning to do something that isn't his preferred activity, or just broadening his mind beyond the things he really, really likes and likes to fixate on.

Sports have been great for the emotional aspect and teamwork, but we've also wanted him to get involved with something that would tap into his love of computers. Or music. I've hoped he would take piano lessons for a while but he refuses (clarinet at school is enough). The robotics, STEM-type stuff isn't quite what he likes. But when his school sent a flyer home about an after-school club where the kids would learn how to code and produce some kind of music video, we knew he HAD to do it.

Of course he didn't want to. "That'll cut into my screen time," he protested. He hates having anything happen after school. Getting him to sports practices is always an event.

"The whole club is screen time!" we shot back. After much hemming, hawing, and whining, he said he'd go (which was good, because we were going to make him).

We knew we were onto something the first day. He came out of the school with a big smile on his face and jumped into the car. "I LOVED my class!" he said.

I nearly drove off the road. This never happens. Ethan is not one to be overly enthusiastic about things that don't involve winning a game. When we got home, he wanted to jump on the computer to show us what he'd done and then keep working on it.

And that's what he's been doing now for about the last six weeks. In some ways, we're surprised (we've tried to get him involved with coding before, to no avail). I'm guessing the key has been introducing him to coding through music. He's very musical and especially interested in sound, video game music, electronics, sound effects, and so on. So he's spending a lot of time right now in this coding program looking at other people's projects and finding ways to put his own stamp on them -- things like his own version of Guitar Hero set to songs he likes or scenes from a video game with different sounds. And explosions. Lots of explosions.

Ethan is not a savant and isn't sitting there hunched over a computer programming his own games from scratch. We still don't know at this point exactly what he will end up doing or how or how challenging it will be for him to stay on task and learn in a college setting someday, but we are just excited to see him excited about creating something rather than just consuming.

But more than that, it's especially rewarding to see him excited about something that he's created. I mean, excited enough to talk faster and longer than usual, with a sparkle in his eye. And yeah, as a parent it's immensely satisfying to prod your kid to do something that he actually then ends up loving.

The other night Ethan came across a song he wanted to use for a new project and he began playing it for all of us. But he didn't just play it (via our Alexa) -- he started dancing. This song was full of all sorts of electronic, synthesized sounds (his favorite) and he couldn't get enough of it. Next thing we knew he was dancing all over the TV room.

As I watched him I realized how rare it is to see Ethan dance. It's not normally his thing. And autistic people aren't really known for being dancers. But there he was, bopping around the room, doing utterly ridiculous moves, acting silly and outrageous. I realized than even better than seeing him excited was seeing him happy, full of joy and energy. Without the coding project, we wouldn't have had the song or the dance. We wouldn't have had the moment.

As he danced he looked a little like that feeling you have when you're doing the thing you love to do. You are completely immersed in the moment. And you just can't get enough.

He's only 10 years old, so I don't know. I don't know, but maybe we've seen just a glimmer, just a glimpse of the path he might take. And that's all we really need right now.

Saturday, February 17, 2018

Sick Days

Years ago when I worked for a hospital's Marketing/PR department, we attended a retreat featuring two consultants whose talk centered around "customization." Their point, which proved to be accurate, was that the trends were pointing to people more and more wanting an individualized experience, whether that came to retail, vacations, or even healthcare. The key was to tailor products towards meeting each person's unique needs or preferences -- and to make that point they gave us little goodie bags based on a series of questions we'd answered in advance. Among my special items were chocolate chip cookies (a favorite food), journal (for my love of writing), and a C.S. Lewis book (relating to someone, dead or alive, I'd said I'd like to meet).

When it comes to our kids, I don't think any one of us needs a high-priced consultant to tell us that a one-sized approach does NOT fit all, and it's extremely beneficial to tailor everything from your discipline techniques, rewards, or praise to each child's individual needs. And while back at that retreat years ago I never quite understand how healthcare could be highly customized -- I'm learning that in our house, one of the areas in which they need drastically different approaches is, of all things, when they're sick.

I have always been one who likes to pamper people when they're not feeling well or hurt. Some people probably call it fussing. I most likely get it from my grandmother, who was always fretting that people were too cold and giving me St. Joseph baby aspirins for my sore legs when I slept over. I like to tuck blankets around people and bring them drinks. I go overboard with temperature-taking. This is a way, in my head, I like to show care and concern for people, so it came as pretty much a shock to me when Anna was little and hated it all.

When she was sick, she was in denial. She refused to stay in pajamas. She wanted no pampering; no blankets. She'd do everything to fight taking a sick day from school, including, to our frustration, going to school with strep throat and ear infections (we would learn later) several times when she was younger.

In time I realized that I couldn't take Anna's reaction when she was sick as anything personal, and it was pointless to continue fighting. We focused instead on her being at least truthful when she was not feeling well, and not over-exerting herself or infecting others because she wanted to act like she was fine. Trying to force my way of parenting in this regard wasn't really helping her -- just stressing her out.

Now Ethan on the other hand doesn't mind being fussed over at all when he's sick. One of the greatest ironies is that my one kid on the autism spectrum can be very cuddly, especially when he's not feeling well. So I go all out with my blankets and medicines and warm drinks and books and I'm in all my glory. Except, of course, that after a while it's awful to see your kids sick and you just want them well and themselves again.

So now we come to Chloe, who just turned four and is getting smarter and more observant about the way the world works. A few weeks ago she jumped off the couch and hurt her foot. Of course it was one of those things that happened when no one was looking so it was hard to understand exactly what she did. All we knew is that she was limping and said her foot hurt. I was impressed she willingly let us put ice on her and sat for quite awhile uncomplainingly. The night I fussed over her and putting her foot up on a pillow and gave her some medicine because she said she couldn't fall asleep because it hurt.

The next morning she wanted me to carry her up the stairs so I figured it was time for a visit to the doctor. Interestingly, as we headed into the doctor's parking lot she was limping, but in the office she was able to jump up and down without an issue. The doctor was unsure and said we could get an X-ray if we wanted to or hold off -- and I would have undoubtedly waited, except, when I was a kid I dropped a brick on my foot and broke it and walked around with it broken for a week. Since I was always the type to complain about sore legs, people thought I was just whining again. Plus Chloe had starting limping again as we walked out to the car.

We got the X-ray. Everything was fine. The next morning she was jumping around like nothing had happened...until I asked her about her foot. Her demeanor changed. "It hurts still," she said in a downcast voice. She grabbed onto it and started rubbing. The wheels in my head started turning...

...and were still turning a few days later when Anna came down with a cold. "My throat hurts," Chloe announced. I took her temperature. Normal. She was eating fine. "I think my nose is a little stuffy too," she told me, giving a few extra sniffs for emphasis. For days she kept saying that her throat hurt and that she had a cold, although she was otherwise her regular self.

A few days later someone had hurt their finger and of course we all asked the question, "Can you bend it? Yes? Then you're okay." So not long after that I heard Chloe calling to me when I was in the bathroom. "I hurt my finger! I can't bend it!" she added for extra emphasis. Her finger had the tiniest scratch. She could bend it just fine. The more closely I looked, the more I realized the my youngest is quite a little actress. I also realized that as the youngest, she loves getting attention more than almost anything.

So, once again customization comes into play. With Anna, we used to have to convince her she was sick. With Chloe, we'll have to downplay everything.

This makes me laugh a little, because my mom and I have a long-standing joke that when I was a kid, I was always whimpering over something, and she was always saying, "You're fine."

But now with Chloe, I know. That's what she needs to hear sometimes. "You're fine." She doesn't need blankets or Band-aids (which she loves to take out and stick on herself). She needs to learn to speak up only when she really is hurting.

With our kids it's not always about relating to them on our terms or preferences. It's about what's best for them.

I love to pamper when someone's sick, but don't pamper Anna because she doesn't like it.

I love to pamper, and can pamper Ethan that way because it's what most helps him when he's not feeling well.

I love to pamper, but can't pamper Chloe as much as I'd like because she will learn to milk it for everything it's worth.

Customization. While it hasn't translated over all that well into healthcare at this point, I can apply it to how I care for my kids.

I think as parents we all learn this. There is no "one size fits all" approach. Ever. And that's a good thing. That's what makes them the unique and fascinating individuals that they are.

Thursday, February 1, 2018

Be the Squeaky Wheel

Ethan has very few accommodations as part of his 504 plan (which went into effect when he switched out of special ed. over a year ago), but one has been to take part in a social skills group with peers.

A social skills group is vital for Ethan. Is it essential? Probably not. Realistically I'd say it's most important that he can speak, read, write, and do everything he needs to function in society. But to function well, social skills are essential. And the older kids get, the more complex and nuanced communication becomes.

If the school had no social skills group available, we'd take him somewhere else, most likely. But they do. They offered it, they put it out there. I probably wouldn't desperately fight to get him the service when there are kids out there who need more. But again -- I mentioned it, they agreed without hesitation. The schools have provided Ethan with an awesome curriculum (Social Thinking) since second grade, and it's taught him (and us) a lot.

Which is why I became pretty infuriated to find out it wasn't happening.

This isn't the first time something like this has gone on, and I know other parents have dealt with this issue, too. And I'd really love to know why.

I believe it's important to extend grace. When the school year begins, of course everyone needs to get settled in with schedules and staffing. I also understand that some weeks, things just happen -- snow days and sick days and field trips and the schedule gets turned upside down. Did I ever expect Ethan would be meeting with his group every single week from day one of school? Of course not. But recently I learned that since school started in late August, he'd gone to his group about three times. And hadn't for months.

I'd started with an email to the person running the group about three weeks after the start of school -- just a "checking in" to see when the group might be starting up. There was no response. Finally sometime in October I heard back that the group would be launching. Great. Ethan came home with a worksheet one day...and then nothing.

I sent another email. No reply. And then when we were meeting with Ethan's developmental pediatrician at the end of November and she asked if he attended a social skills group, he said no.

"What about the one at school?" I asked.

"Oh, we haven't met for a long time," was the reply.

Back to the email again. This time a few days later I magically got a response about what had gone on in the group. I got hopeful. They met up a few weeks later again. But can guess how this goes. Forgive the rude analogy, but it's kind of like kicking a horse to get going, and it trots for a few steps and then slows to nothing once again.

As we moved into January and Ethan said his group still was not meeting, I realized it was time to take things up a notch. I hate doing this, for many reasons. I don't like burning bridges. I don't like having to go over someone's head. Sometimes this feels like "tattling." I'm not naturally an aggressive person. But we all get a little more aggressive, I think, when it comes to our kids and helping them to get what they need.

I wrote the principal an email and basically laid it out there -- this was unacceptable, this was not what we'd agreed upon, and something needed to change. And wouldn't you know, two days later the social skills group kicked in again. And I've received an email update on what was covered, for three weeks in a row now.

Recently Ethan mentioned in passing the other kids in the group, and that's when it really hit me -- this wasn't just affecting him. These other students had also been missing out on the group, and without my speaking up, THEY would still not be receiving the help they need, either.

When Ethan first started in school, I heard it again and again: Be the squeaky wheel. Keep on them. If they know you're involved and paying attention, they'll stay on top of things. They're more likely to give you what you want. Make sure they know you're watching, that you're going to fight for your child.

This kind of sneaky, almost combative language put me on edge. I hated the feeling of mistrust in the air. But sadly, now I understand it. And sadly, I've heard story after story after story from other parents.

I don't want to bury the schools here. I don't want to believe that they do the bare minimum, that they don't have kids' best interests at heart. I want to believe better. I just wish someone would explain to me why parents have to constantly be vigilant or fear their child won't be getting the number of speech hours they are supposed to receive, or OT, or PT, or a social skills group? Many of these children can't speak for themselves. Many parents ask for notes and don't receive them. So, how will they ever know?

Something is wrong here. The answers probably are complex.

So until this is figured out, yes, I will be the squeaky wheel, and more than that, I will encourage the parents with children who are younger, parents who are newer to this, to do the same. At the very least, if you don't want to live life as a cynic, trust, but verify. Every single time. You may be surprised what you learn.

Tuesday, January 9, 2018

Beating the Buzzer

Last Saturday was Ethan's first basketball game, and he was a little nervous.

I couldn't blame him. His team hadn't had a practice due to a snowstorm, he'd never met his coach, and had no idea who was on his team or if he'd know anyone. He'd just moved up a level in the league, which meant he was now with fourth and fifth graders, all boys (no more co-ed teams). Some of these kids play basketball all the time. Ethan hadn't picked one up (except for gym class) since last year's season.

We walked into the gym in the middle school, where two other teams were about to finish their game. I looked around for someone who might be his coach and saw a guy holding a bunch of yellow shirts, but wasn't sure if I should go up to him. I thought about Googling the Thunder (the name of Ethan's team) to see if they wore yellow shirts, since I had no idea.

That's the funny thing about basketball. Dan and I rarely know what's going on. We're learning a little. But half the time there are whistles and buzzer going off and we have no idea why. There is so much I still haven't picked up about the game.

Oh yes, buzzers. As we stood there, I looked up and saw we were under a giant scoreboard. Sure enough, within a matter of seconds, the loudest and longest buzzer in the world went off right over our heads.

Ethan recoiled and grabbed his ears. Chloe covered her ears. It WAS loud. And annoying. I could see he looked horrified.

"Why do they have that buzzer??!" he asked.

I tried to distract him. "Look! There's one of the kids in your class playing!"

He was having none of that. "That buzzer is horrible!" he exclaimed. It went off again. Chloe started whimpering. "I don't want to be here," she whined. Ethan had made a beeline for the hallway, pushing past more and more people who were coming in for the next game. His game. Which was supposed to start in about 10 minutes.

He stood in the corner near some lockers. "I am NOT doing this!" he said, panicked. "Why did they have to have a buzzer like that? They just ruined my basketball season!" Last year, in a different gym, there'd been no buzzers, just whistles, which he'd gotten used to after a while.

And so we faced the autism curveball. All parents of people on the spectrum will understand this. You plan for something, you go somewhere...and maybe they change the schedule. Or they don't have the food your child was promised. Or they play by different rules.

Or the sound that most irritates and stresses your child is going off and completely distracting them and sending their anxiety sky-high.

Autism curveballs can change the mood in the drop of a hat. They can ruin a day. They often require quick-thinking and creativity. Sometimes bribery and cajoling. On those days you can't get past them, they're very deflating.

We are grateful to not have to deal with too many autism curveballs, and most of them are minor in nature. But buzzers are Ethan's nemesis. We've been dealing with fears of our dryer buzzer for months. A few years ago it was the buzzer the art teacher set off in class for bad behavior. Even the musical "Simon" game was an issue for a while.

Dan walked in at that moment, as Ethan was hunched in the hallway. More and more people huffed in from the freezing air outside and filed into the gym. "He's saying he doesn't want to play," I said. "It's the buzzer!"

"Ethan," I pleaded. "You can't NOT play basketball because of this. Please. The buzzer won't be so loud when you're playing. And there's a clock. You can SEE it running down. It's not like the dryer, when it's unexpected."

"WHY ARE WE STANDING HERE?!" Chloe was wailing. In that moment I wanted to just go home.

"You can do this," we urged Ethan. I gave him a hug and said a little prayer. Somehow he managed to slink his way back into the gym. We approached the coach (who I'd had no chance to give a heads up to about Ethan and autism) and within a few minutes Ethan was on the court trying to have a two-minute practice with his team before the game. He kept looking at the scoreboard. I felt nervous...what if he stopped playing and dropped the ball to cover his ears and his entire team starting yelling at him?

"See if the buzzer guy can help us out," Dan suggested, which I hadn't thought of. I walked over to the sidelines where a guy sat pushing buttons. I hated to be THAT parent, but it was worth a try.

"Hi there," I said nervously. "Are you running the buzzer?" Because I THOUGHT he was, but again, with basketball, I'm rather clueless.

"Yeah," he looked up expectantly.

"Um, well, I completely understand if you can't do this, but is there any way you could make the buzzer just a little shorter or quieter? My son's on the autism spectrum and buzzers are his biggest fear. It's really distracting to him."

The guy's face broke into a smile. "I totally understand. I have a nephew on the autism spectrum. I'll see what I can do."

I wanted to give this stranger a huge hug, relief washing over me. We found seats in the bleachers, sat down...and watched Ethan's team get beat. Kind of badly. I want to say the final score was something like 19-8.

Except -- Ethan was winning. We watched him out there, trying to simultaneously listen to his coach and keep an eye on the clock so he'd know when the buzzer was going to go off. He was doing it. We fret and we stress, but often he is able to pull it together and do what he needs to do.

The buzzer, I have to say, wasn't all that much quieter or shorter than it had been before. But I'd made a connection with someone who understood, someone who was willing to help out. Sometimes that's what we need most of all in a moment of stress.

Yes, Ethan has a lot of practicing to do. The whole team does. But as we walked back to the car after the game, I told him I was more proud of him today than if he'd won that game.

"You pushed past your fear." I high-fived him. "You did it!"

Over time I have gotten a little better at not overlooking the supposed "little things" that people on the spectrum do to get by in a typical world. They need to be celebrated. Other people may not get it, but they don't live it. They don't know the way an autism curveball can throw a person, throw a family, into left field for the day or even more.

So we cheered after the loss, because on that day, at least, we'd beaten the buzzer.

Saturday, December 23, 2017

Winning (just a little bit) at Christmas

Every year it's been the same story. I've written about it here, about how Christmas usually goes. Somehow, despite my best efforts, I get caught in the whirlwind stress of expectations and obligations. There's lots of sighing and crying and not as much joy. Worst of all has been my frustration at trying to move the kids ever-so-slightly away from the me, me, me mindset to thinking just a little more about others.

I read blogs, articles and posts about what other people were doing and felt exceedingly depressed, even while knowing that I don't need to be them or their family. We're us. We're who we're supposed to be.

This year November rolled around and I thought, let's try this again. Because that's what we must do, right? I figured even if we tried and did something, anything, it would be better than nothing at all. And somehow, thankfully, I felt I needed to approach everything with a little more peace and a little more humor.

I grabbed a piece of paper one day after Thanksgiving and wrote in red and green "The 12 Acts of Kindness and Giving." I don't know where it came from, but there it was, in front of us. I called Anna, Ethan and Chloe over and tried to speak quickly before Ethan lost interest (a continued issue in the past). "Guys, this year before Christmas we're going to do 12 things for others that we haven't done before, things we talk about but never get around to doing." I announced. We chatted for a few minutes about ideas (well, Chloe drifted off to do something else). I mentioned them using some of their allowance or thinking of ideas themselves.

And so the adventure began.

The first thing we did was grab that catalogue that comes in the mail every year, the one where you can donate a certain amount to give people in other countries a goat for milk or a sheep for wool to help provide for their families. Every year we look in the catalog and talk about what would be nice to give and then it gets buried under mail or presents and suddenly the holiday is gone. Or someone would talk about how they didn't want to spend money on that. This year, miracle of miracles, I passed the catalog around and both Anna and Ethan picked something. I did too and before the day was out filled out the form and put the check in the envelope. There was no way we were going to let this one get away from us this year! #1 was complete.

A few days later I paid for several people's Dunkin' Donuts orders behind me in the drive-thru (#2). This felt a little like cheating because I'd done it before, but I wanted to keep the momentum going. Every time we completed an act, we wrote it on the paper.

A while after that we had a wonderfully snowy Saturday we spent baking cookies and making Christmas cards. #3 nearly broke my heart. I'd read an article about a little boy who had been in that horrific church shooting in Texas. He'd survived 5 bullet wounds but lost many in his family...and he wanted to receive Christmas cards from all over. The kids and I sent him a card, and prayers.

I can't remember the exact order of how it all went down (and so numbers that follow may not be completely accurate), but I will say that the more we did, the more our enthusiasm grew. Soon Anna and Ethan (yes, Ethan!) were asking what we were going to do next.

I asked both of them to give towards something they felt strongly about, so Anna decided she wanted to get something for the no-kill cat shelter in town (#4). We picked up some food that we need to deliver ASAP, and I think we will add a donation to that as well.

Ethan suggested we give hats and mittens to his school, collecting for a local women's shelter (#5). We've purchased those and are going to give them to either that or another organization collecting for people living in the area from Puerto Rico who were displaced by Hurricane Maria.

#6 didn't quite work out but I'm hoping we can salvage it. We had hoped to donate small toys to someone going on a mission trip to Haiti but they didn't make it to their destination in time. I am still hoping to donate the items (maybe to Goodwill).

We did #7 on my birthday, out to eat: gave the waiter a super big tip and an encouraging note. I told the kids beforehand we were going to give the big tip, EVEN if the service was bad. That's what grace is all about.

Two of our most "fun" acts (#8 & #9) were ideas I actually found somewhere else. Anna and I spent a little time slipping a few small, encouraging notes into library books. And Anna and Ethan cut out coupons from a BJs coupon book and we then made a trip there to place coupons next to the actual items in the store. This one surprised us because when we went to do that, we found someone else had the same idea! There were coupons next to most of the same items. We just added a few more.

#10 was whimsical and some people might think it's a little crazy. It's another idea I saw somewhere else. I have a ton of spare change. We drove around and just randomly sprinkled change in parking lots and on sidewalks, like fairy dust. If someone really needs it, I know they'll take it.

There was a real sense of gratification that came with #11 due to the debacle that was last year. Last Christmas I bought a number of items to put together little bags of to give to homeless people. Each pack was supposed to contain socks, gum, a little change, toothpaste, a water bottle...a few other items. Only we only got around to making one bag last year. And it sat and sat in the car. We'd always forget about it. Then one day someone really needed change. And there was no toothpaste in the house. Or we needed the socks for some indoor play scape that required socks. We began to dip into the "homeless bag" until it became a pathetic kind of joke. There it sat, ripped open in the car, mocking me and my inability to complete a good deed.

This year I said forget the bags, but did hear about a drive in town collecting socks for the homeless. So we bought lots of socks. And all cheered as they left our car to actually get donated to someone in need.

#12 was homemade cookies we brought to the nursing home down the street. Chloe and I had been there a few weeks before, caroling with her school. It was quite an experience for a sensitive almost four-year-old. She'd never seen people in quite that condition. "Some of them weren't real, mama," she kept claiming after. "They were statues." I knew she was thinking of those who sat in wheelchairs staring straight ahead, as if we weren't there. But many others clapped and sang and smiled, their faces shining. I will never forget the little lady behind a locked door. We couldn't open it: she was in the Alzheimer's Unit and had to be secured behind the doors. But we sang on the other side, and she followed the sound of the music and came right up to the window, peering out at us happily.

When I brought the cookies, I was reminded how uncomfortable I really am stepping at all out of my comfort zone. I don't like walking into places where I don't know people and where someone will undoubtedly ask, "What are you doing? Who do you want?" Even when it's a donation. I hate the awkward feeling. But I pushed through it when I was being gently grilled by a confused staff person. It's amazing how often people don't understand when you want to give them something. They don't always want to receive it at first.

That made me wonder how often we all do that. Why is it that sometimes, especially when we are older and weighted down by life and disappointments and our own feelings of unworthiness, that we find it so difficult to receive?

I ended up talking with this woman for a few minutes. I told her my grandmother had had Alzheimer's and stayed in a similar facility and she confided that her mom had too. I told her we'd come with the carolers. "I remember that," she said with a smile. "There were so many of you."

And so those were the 12 Acts of Kindness and Giving. Did we change the world? Did we do anything that revolutionary? No. Did Ethan say, "Yay, we did everything on the list! Do I get money for that?" Yes. This is a work in progress.

But we took baby steps. We did something. We all stopped for a few minutes to think about the world around us that we touch every day in different ways and how we might make it just a little better. In the process I felt just a bit more connected to my community. And understood a bit more how important it is to push past an uncomfortable, self-conscious feeling if it means helping someone else.

I learned that the 12 acts weren't about a list or duty, but about real, living people who are dealing with all kinds of things. I hope the kids remember that, too. What a gift that is...true compassion. Empathy. And a journey away from selfishness.

Wednesday, December 6, 2017

The Center of Everything

A few years ago Ethan fell in love with the rock group Trans-Siberian Orchestra. They're known for their over-the-top arrangements and dramatic sound and lighting productions that often synchronize the lights and music. Ethan had several of their CDs and for a while and knew many songs by heart. I can't tell you how many times I caught him upstairs blasting music at a staggering volume and singing at the top of his lungs (or playing air guitar).

He especially liked their Christmas album, and while his interest has waned a bit over time the Christmas-themed songs by Trans-Siberian Orchestra are always his favorite when they come on over the holiday station in the car.

Ethan just had his 10th birthday, and since he chose to get a bigger present rather than have a friend party, Dan and I thought the perfect "big" gift would be tickets to see Trans-Siberian Orchestra live. They're not cheap (but thank you, Groupon!). His first concert (we won't include that trip to see "SuperWhy" back five years ago) -- ideal to celebrate a double-digit birthday, right?


Unfortunately the only seats available were at the 8pm show on a Sunday, a school night, an hour away at the casino. Not ideal, but what could we do? The weekend ended up being a busy one. We were out Friday evening, then Saturday on a whim Dan decided to surprise the kids with a  trip to New York City. They had a blast (Chloe included) walking around near Rockefeller Center and checking out the Nintendo store.

The only downside was that Ethan didn't get to play the new Mario game he's been trying to beat. He worked to talk himself out of being too upset. There was a train to ride and sights to see. I think he told himself he would focus on Mario on Sunday afternoon.

Only by the time he turned on Mario on Sunday it was later in the day. And whatever it was he was trying to beat, he was having an extremely difficult and extremely frustrating time. When Ethan can't beat something he really wants to beat, he does not want to turn the game off or shift his attention in any way possible.

But it was time to leave with Dan for the concert.

Ethan didn't want to turn the game off.

Dan came upstairs where I was after talking with Ethan for a moment. "Okay," he said, "I'm going to try to not have my feelings hurt here..."

Ethan didn't want to go. And he was making that very clear.

I went down to talk to him. He had just "died" again and was finally turning things off. He wasn't happy. He was actually pouting, refusing to budge from the couch.

"I know you're frustrated about the game, but didn't you want to go to the concert?"

"No!" he exploded. "Mama, I'm sorry, but I don't really like them as much as I used to. I was disappointed about those tickets and wanted a BETTER big gift for my birthday."

"Like what?" I asked tiredly.

"Like all the screen time I want. Why couldn't I have that?? That would have been a good present. I don't want to go to this concert. It's stupid! I want to play my game! It's not fair!! I didn't have enough time on it!"

I walked out of the room, tears blinding me and marched upstairs, where I slammed the door to our room. Dan knew what was coming.

"Yeah, he doesn't want to go, and he made that QUITE clear," I snarled. Then I said what I'd been really wanting to say. "Look, I know he can't always help it sometimes. But I HATE how autism is so so self-centered! It's always got to be about THEIR routines, THEIR preferences, THEIR schedule. I'm sick of it!! And why do we do anything for our kids, if they are this ungrateful? What have we done wrong!?!"

I raced downstairs, still crying. Sorry folks, but this is the ugly truth.

"You WILL get your coat on," I spat out at Ethan through tears. "And you WILL stop complaining about your game. You went to New York City and a concert within 24 hours and this is the way you respond?? I don't think so."

Ethan was startled enough to start getting himself reading to go, albeit reluctantly.

"I've had ENOUGH of this whining and complaining and ungratefulness!" I felt like a pressure cooker, squealing. "I know you love screens above everything else but you can't use your autism as an excuse to say whatever you want. You HAVE to start thinking, as hard as it may be for you, about other people, too!"

Ethan and Dan got ready to head out the door. I sat down to clear my head, but I couldn't. Everything was a confusing swirl of guilt and frustration. Was he just being a brat? And if so, how could we encourage more gratefulness and a better choice of words? If it was the obsessiveness of autism speaking, what could we do? I vacillated between feeling tired at the same story playing out again and again, and the guilt of knowing it could be so much worse.

How could I complain and lose it, when he's so high functioning? One voice yelled. There are people who can't communicate. Who are self-destructive. Who are completely dependent on others. There are people who have LOST their children. This holiday season is hell for them. YOU'RE the one being ungrateful! 

And what kind of mom was I? Another voice screamed. What kind of mom was I that I had such a hard time MYSELF with self-regulation? Why did I again and again tell my kids (and so often YELLED at my kids) not to lose it when I so often did, or was even in the middle of doing so? The irony. 

Never mind that, what kind of CHRISTIAN was I? Another voice sneered. These things always seem to happen on days after I've done churchy stuff, like sing on the worship team or do a Bible study. Oh, you act so pious at church and look at how you are once you're home with your family, the voice taunted.

I couldn't let him go off after I'd just yelled. I hated doing that. And so I gave him a hug, and I apologized for yelling, and then I still felt angry as he went complaining and grumbling into the car. Dan sent me updates by text. Ethan would barely talk the entire time in the car. He kept grouching about not wanting to be there. We just wanted to give him a gift we thought he'd enjoy. Something special. One on one time with dad. Was that too much to ask?

It was a long time coming, shaking the anger, and shaking the guilt.

Ethan and Dan ended up coming home before the concert was over (it was already way too late) and as I suspected, despite everything he'd spewed, he'd ended up having a pretty good time. The effects were amazing. Ethan was wowed. It may not have been his best birthday present ever, but he muddled through until he found some joy.

Sometimes I long for him to grow more aware of how his words and actions impact others. Maybe a lot of people say that about their kids. Maybe sometimes I just want to feel like the ways I am trying to help them are making any kind of impact.

Sometimes I need to remember to accept that all of those yelling voices in my head may hold a kernel of truth. Yes, being integral, counting my blessings, and having self-control ARE important. And yes, it was okay to feel frustrated and hurt.

It's not all or nothing -- not living in oblivion or sinking into depression -- but just the reality of a situation that wasn't ideal.

I got angry because the nature of autism is to become the universe that all else revolves around. But self-centeredness is not an autism trait, it's a human trait. Among those kernels of truth for me to swallow is that I do the same thing, and that one of my greatest failings is to turn any difficult situation to something about me, my hurt, my response, my disappointment. Beating up on myself was still, well, self-focused.

I know there is a better way.

I'm just still working on that: not with only good intentions, but with God's grace, at the center of everything.