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 then...you 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?

Maybe.

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.































































Saturday, November 25, 2017

Leaf jumping

"Mama, go rake me a big pile of leaves so I can jump in!" Chloe demands as we head outside.

The leaves have wrestled themselves free from the trees in our yard again and are scattered, well, everywhere imaginable. We've had a love/hate relationship with the trees and the leaves in our yard. Lately it's been a little more love. Yes, if we were to rake them all we'd have easily 150 to nearly 200 bags. They're endless. They're annoying. They are an inviter of drudgery all around our neighborhood. You can almost hear the collective sigh on Saturday mornings as everyone gets to work with their leaf blowers and mowers.

But something about leaves whispers childhood...my own, and my kids'. I love the sweet, hay-like smell of dying, brittle leaves. I love the sound they make shuffling underfoot. And yes, it's a rite of passage, growing up in New England: raking a big pile of leaves simply in order to jump in them.

I remember the feeling of covering myself with leaves -- the scratchiness and dirt in my mouth and crumpled bits of leaves in my hair. Like being buried in sand at the beach, it's itchy and claustrophobic. But it's part of being a kid.

When Anna was just four months old I took a picture of her sitting in her baby carrier under one of the maples in our front yard, while I raked leaves. By the next year she was walking and the year after that she could run and jump into them -- which made the job infinitely more difficult. But also more fun.

That's always the tension, isn't it? You have things you need to do, and kids make things more messy and harder to accomplish, but also make you slow down and maybe even laugh, or actually jump into them yourself...if I we can take our eyes off the task at hand for just a moment.

The neighbors across the street, whose kids are grown, plunge into their leaf chores each October and November with grim efficiency. They mow and gather and clear the mass of leaves with precision and in what I would consider record time. No one is yelling...but no one's laughing, either.

Another neighbor doesn't tend to the leaves herself at all but rather calls a group of guys to stop by and remove nearly every last one of them in the span of a couple of hours.

I've written before about our arguments over leaf raking: the tears, the throwing down of rakes, the bribery, the backaches, the endless quest to complete a task that never gets done. For years, they stressed me out.

Then I started to realize a few things. I realized we didn't HAVE to rake all the leaves. I want to, but sometimes life, especially this stage of life, gets in the way. And while I do want to get rid of at least some of them, particularly in deference to our neighbors on either side, who work hard to take care of their yards, I also know that maintaining a meticulous yard is not my end goal in life.

I thought of an amazing family I once spent time interviewing and filming for the Children's Hospital. When we arrived at their house, their yard was a disaster. They'd had greater issues to confront, like keeping their child alive, and traveling out of state for additional care. They probably saw their yard with different eyes -- not as a leafy mess, but as home.

I realized we could bite the bullet and pay to have someone haul all of the leaves away. We have done that a few times. It's not cheap -- our yard may not be huge but is surrounded by trees in the back -- but doable.

Only there are times, in my calmer moments, when I think by having someone eliminate the tradition of raking up our leaves, we may end up missing something.

Would we miss out on those moments of looking up at the trees towering over us and watching as the wind wrestles a few free? As they sway to the ground, the kids try to catch them. Anna used to race around with a butterfly net. There are the times we've lain in a leaf pile and enjoyed the view looking straight up at the trees or the clouds. And even the bickering about who does what is fashioning a memory.

Anna hates raking leaves these days and has little interest in leaf jumping. Ethan is almost getting to that point, at least about finding pure joy in leaping into them.

"Eeth, do you still like jumping in leaf piles?" I asked him the other day when we were outside.

"If you rake a big enough pile, yes," he replied. Then he rolled around with Chloe in the pile we'd been raking. But I wonder if those days are drawing to an end. I wish they wouldn't. I wonder -- why do adults never jump in the leaves? I've been telling myself that I need to remember to.

Chloe is young enough that she will marvel at the smallest pile. This is one of the gifts of having a youngest child much younger than the older ones. I treasure the excitement in her eyes at the sight of all the leaves just a little bit more. I know in a way that I didn't when Anna and Ethan first jumped in the leaves: these days will fly by, just.like.that.

But they don't have to. Yes, there will be days to come when we'll find the house quieter and chores easier to manage. There will be days when maybe we'll be able to everything on our to do lists, but that doesn't mean we always have to.

For now, we've found a compromise. We do some of the leaves, and have someone take care of the rest. I don't know, maybe we'll keep things that way. It's great to make things easier. But sometimes hard, and messy, and overwhelming, and what you can work with your hands and breath in with your nose, those things that make you both laugh and cry, are what make you feel more alive. And they are absolutely beautiful.




























Sunday, November 12, 2017

Finding Our "Mojo"

So this year Ethan's school has a new behavioral incentive program called Dojo. I'm not exactly sure what "Dojo" means (Ethan says it has something to do with little monster characters) but the gist is that it's an online point tracking system in which kids either earn or lose points due to various behaviors throughout the day. Staying "on task," for example, might earn a child 10 points while not turning in homework might mean a 10-point loss. Kids can view their individual accounts online (including a circle chart that fills in with either green or red), and of course can earn prizes for reaching a certain number of points.

Ethan loves Dojo. I mean, LOVES. It's visual, it involves math, it's very cut and dry (do this - earn that) and VERY motivating. Aside from a meltdown in gym this year about someone cheating on a game, Ethan has been a model student. We get phone calls. Notes. Messages. I'm told Ethan is a "great role model," "a hard worker," and "wonderful at staying on-task." Sometimes I've reviewed these glowing messages while staring at Ethan, just home from school and screaming, rolling on the floor because I took his video games away, and wondered how one child could be so different in two different places. I know kids as a general rule act better for their teachers than parents but sometimes lately the contrast is just over the top.

Mornings, for example, had become especially challenging. The ultimate "on task" child at school has been rarely on task to get out the door. I've found him relaxing in bed, still in his pajamas with a Captain Underpants book, when it was time to leave in 15 minutes. Homework, getting off screens, leaving the house for sports practice -- these have often turned into me pleading, yelling, coaxing, threatening (sometimes nearly simultaneously). One day in frustrationI shouted out, "We need Dojo in this house!" and it was as if the proverbial lightbulb went off over my head. That was it. We DID need Dojo in our house.

The next day I announced to Ethan that we were going to launch Dojo at home.

"You can't do that, it's copywrited!" was his not surprising reply. "They'll sue you!"

"Ethan this is just for us. Nobody's going to sue me," I said. "And anyway, it's not Dojo. It's...Mojo."

"Mojo?"

"Yeah, Mojo. The M stands for 'mom.' And we need to get our mojo back around here."

And so Operation Mojo went into effect. It's really playing off a parenting technique I've heard others talk about but that we haven't employed so much. Some say that it's better to have your child earn rewards for good behavior rather than have desired items taken away due to bad behavior. It's less negative. I've shied away from this sometimes because honestly I get tired of feeling as if my child always has to feel as if they are being cheered on and rewarded. Sometimes, darn it, they have to have consequences and they will have to know what it's like to not get their way.

However, I'm also open to new things. Especially when some of the old tried and true ways just aren't working anymore.

Earning "mojo points" means that for each task Ethan knows he needs to accomplish, he earns 10 minutes towards his afternoon screen time. If he needs constant nagging to complete a task, he loses the 10 minutes (but can earn them back). So: eating breakfast and packing up his backpack, 10 minutes. Making his bed and picking up his dirty clothes, 10 more minutes for 20 total, and so on.

We've had Mojo in place for about a month now, and I have to say, our mornings are a lot more pleasant. At least with Ethan. (We've had some interesting battles of wills with Chloe lately, but that's another story...). If it's almost time for school and he's only earned 30 minutes of his screen time, he gets REALLY motivated to feed the kitty and take out the trash to earn more points, for example.

Of course, once he's had his screen time later in the day that motivation fades, but we're working on that. Sometimes the evening's behaviors also count towards the next day's mojo points. Sometimes this doesn't matter and we're still arguing about him practicing his clarinet or doing his reading. Of course we are. He's a kid. But the point is, it's better. It's much more bearable.

So I would like to thank our town's public school system for adopting this program. I'm not sure how effective it is with other kids, but for my literal, visual, rewards-motivated one, it's a godsend: for school and home.

And I'm reminded that sometimes as parents, we have to be flexible, we have to be creative, and there are times we have to throw our hands up in the air and pray for wisdom, because this parenting thing is often not for the faint of heart. I've been doing that a lot lately. And have the feeling I will be for a long, long time to come.