Sunday, May 20, 2018

Gems with Imperfections

We were in the car and Chloe was playing with a toy the teacher had just given to her -- some kind of cute, stretchy pink bunny; kind of Gumby-like. After a few minutes, she stopped her squeals of joy and the backseat got quiet.

"'s broken," she said softly.

When we stopped the car I took a look and had to squint to see the teensy-weensy little part of the pink rubber material that had come off one pink leg.

"You mean THIS?" I asked. Chloe handed the bunny to me. She didn't even want to look at it. "It's broken now. I don't want to play with it anymore," she said sadly.

This has been a somewhat infuriating theme for several months now. While Chloe is not meticulous about things like her room, her clothes, or her appearance, if a toy shows the slightest sign of defect, she's done with it.

So when she misplaces one of her toys from the "Octonauts" set...or breaks a string on her little guitar...or notices paint wearing away in one spot on one of her bath toys, that's it. She loses interest. Well, except if we turn the house up and down to find the Octonaut toy. But that's an exhausting endeavor that seems fruitless when she loses it again two days later. If not two hours.

I have tried to figure out this whole thing, wondering if it has to do with some shades of perfectionism. Again, that word doesn't seem to fit quite right because this is a girl who steps all over the books on her floor wearing red rain boots and a blue winter coat with a rainbow dress -- with dirt on her face, "ready" for school.

"Chloe, the toy has just a tiny little mark," I'll say. "Nothing is absolutely perfect. You know, we still love you and play with you even though you're not perfect."

Of course this idea is lost on her. She just shakes her head when we say that and hands the toy back.

But it got ME thinking. An inanimate toy is one thing. People are another. Especially people that aren't your own flesh and blood, that you aren't kind of obligated to do life with. People who do things like talk too loudly; are always late; have interests completely opposite to mine; interrupt; read different kinds of books. And so on.

I live in a family of introverts. I'm probably the most extraverted of the introverts, but still prefer quiet...books...a cup of coffee and a blanket on a rainy day...deep conversation with one other person. We introverts tend to be sensitive, and we tend to be idealistic and maybe, yes, lean toward perfectionism. At least some of us.

We find it easy, I couldn't help but think, to discard people not unlike the way Chloe prefers to eschew a toy once she discovers a flaw.

Oh, how we love order. The friend that is always where she says she'll be when she says she'll be. The person who speaks thoughtfully without accidentally blurting a backhanded compliment. The one who doesn't act rashly or try to draw attention to herself.

We love people who are like us, when sometimes we need people to refine us.

If I give Chloe back a toy with an obvious imperfection, I can see how much it bugs her. She'll keep stealing glances at the black mark on the doll's arm or the missing piece. It's a subtle kind of nails-on-chalkboard feeling. But I think if she would give it awhile and allow herself to see the toy as a whole, maybe, just maybe after a little while she'd stop honing in on the imperfection and start having a little more fun again.

I saw that this morning when she picked up the guitar with one string broken and started strumming it once again. She began singing the simple song that I had taught her. She could still do that, even with the broken string.

The Velveteen Rabbit has always been one of my favorite stories. It's about what a boy's love does for a toy bunny. But what does loving that ragged rabbit do for the boy? It softens him in the same way the rabbit softens with age and years of play. He loves better.

I would like Chloe to be less picky about toys, but more than that, I'd love her to love better. I'd like ME to love better. Before we can truly "love our enemies," as the Bible tells us, we need to start by practicing with the people who maybe just irritate us sometimes.

Maybe we can remember that we all, even us, have our own unique set of annoying faults. Yes, we actually do!

We will never find the perfect friend, or spouse, or social group. We're going to have to do a bit of bearing with each other. Or else our other choice is to do Alone. Alone is not so bad sometimes -- especially for us introverts. But sometimes we need to take the plunge and do life with people. Life with people can be messy and infuriating and even heartbreaking. Also beautiful.

Tuesday, April 17, 2018

Speech Matters

When it comes to his general use of language and residing on the autism spectrum, Ethan's done well. He's done very, very well. The child who had maybe 20 words at his 2nd birthday soared through speech therapy, including the use of pragmatic language.

Ethan's doing great. He does have some idiosyncrasies in speech that we talk openly about all the time. For example, his tendency to use the more formal version of words (so, "hurt" becomes "injured," or "throwing up" becomes "vomited"). It's very hard to explain why he should use the more casual version of the word in everyday conversation, because in reality I'm not sure why he should, except to avoid ridicule from fellow fourth graders.

He also hates relating to people with meaningless pleasantries. So if Chloe says, "Ethan, I found my blue shoe," and Ethan has no interest in that or really doesn't care, he just doesn't say anything. For a while I told him he could just say something like "that's cool" but he protested that it really wasn't, it was something silly that wasn't "cool" at all. I realized he was technically right and asked if he couldn't respond with a simple, "Oh?" that would show he had at least heard what the person said. "It's not always about you," I tried to explain. How does anyone really successfully use that argument with a kid? Nevertheless, I tried. "Sometimes you respond just to show you care about the other person even if you don't care about the information they shared." We're still working on this one.

Lately, Ethan has discovered something about the English language, and yeah, it kind of falls in with the whole "formal-speak" issue. He's realized that not only does he dislike shortened versions of more formal words, he really, really dislikes contractions.You know, like can't, won't, shouldn't, and the whole mess of them.

I don't even remember learning contractions, except when everyone would argue about how ain't wasn't really a word. I don't know when you learn them -- first grade?? Who knows. As usual, this is something I've rarely thought about, but autism has a way on shining a spotlight on many things we wouldn't otherwise have thought about.

First he shared he really prefers saying "thank you" rather than "thanks." If I told him "thanks" for something he would correct me. I responded that I understood, but it was really the purpose behind what I was saying that mattered -- the important thing was that I was thanking him. Of course he always remembers to chime in "you forgot to say you're welcome" if I do. Or maybe I should say, in his case, "you are welcome."

We will be in the car and Ethan will say that he's going to make sure he doesn't use any contractions. I'll ask him why he dislikes them and he doesn't really have a good reason.

Kind of like asking me to explain why I dislike NOT using contractions.

At church he asked to hold the door for people as they were leaving and we were still getting coats on and chatting with people. He must have stood there for 15 minutes as people streamed out. Once we got going, he confided: "Mom, 37 people thanked me for holding the door. And not one of them said 'thanks.'" He was very happy about this. Not that they thanked him...but because they said "thank you."

The next week he was holding the door again and I purposely said, "Thanks!" as loud as I could, then tousled his hair. He knew I was just kidding around.

One morning he announced, "I like the Bible."

I kind of had a hunch what was coming.

"Because God, when he talks, never uses contractions," he continued.

"You like that, huh?" I asked. "Why?"

"It just SOUNDS better," he said.

"More powerful?"


That got me thinking about how God or Jesus really spoke minus the King James translation. I wondered: how DID God speak, thundering from the mountaintop? How did He speak through Jesus to a group of people? Was it ALWAYS like Gandolf in The Lord of the Rings ("YOU SHALL NOT PASS!"). Or was it a little more like Jesus Christ Superstar? Somehow I figured it was NOT a bunch of thee's and thou's. But then again...

Thanks to Ethan the speech matter momentarily becomes an existential one. I start thinking that a being that is otherworldly truly speaks the language of galaxies, of the universe, far too complex for a mere human mind to understand. However, God reaches to our level and communicates in a language we can follow. Even if it's not His natural one.

The least we can do is meet Ethan at his level. We can work to understand the translation and hear the heart of what he's saying rather than just the words. And it's what we ask him to do all the time. We meet people where they're at because we love them. That's why we ask him not to correct a friend that's using contractions, or to show interest when someone says something benign. It's a way we die to the ever-present disease of self. It's a way we show love.

Wednesday, April 4, 2018

When a Reward is Not a Reward

A few weeks ago Ethan came home from school with a paper. All the kids in his class who'd scored high marks for good behavior were invited to a special breakfast before the start of the school day to reward them for their exceptional behavior.

"That's so nice," I ooohed. Ethan grumbled.

The morning of the breakfast did not start well at all. He'd had trouble falling asleep the night before and wanted to sleep late rather than get up early, of all things, for the breakfast.

Then he couldn't find his homework. And he realized he had health that day and really, really didn't want to go to school at all. (He hates health. Who can blame him?). He wanted to play with his circuits. Lately he's loved doing his circuits. School was an interruption.

"We need to get going," I urged.

"But what about my bagel?" Ethan's favorite breakfast is a bagel with butter. He'd eat it just about every day if I let him.

"Eeth, you can't have a bagel today. They said it's a pancake breakfast."

"But I want my bagel!" I could feel his anxiety rising.

"Look," I said, deciding to bargain. "If you get ready, I'll make you a bagel too, since you hardly ever eat at these school breakfasts."

He liked this idea, but didn't want to get ready. Today the world was against him. This Tuesday was like a Monday. I tried to tell him so many people feel the same way, getting up not wanting to go to work or school. Or health class. It was part of life. You just had to push through.

The pushing was feeling like slogging through mud. By the time he had stopped shooting baskets in his room and doing other fiddling around, there was no time for a bagel.

"WHY?? Why do we have to do this?? Why can't I just have my bagel and relax!!??" he wailed.

"Ethan, this is supposed to be a REWARD, you know, not torture."

"Well it's NOT a reward for me!" he shot back.


I knew he was right. It wasn't a reward for him. This special pancake breakfast was an interruption to his schedule; a disruption of the norm.

Getting to school early, having a different breakfast, being forced to make conversation with peers and teachers in an unfamiliar setting...these were scary propositions.

I knew it wasn't his two teachers' fault. They were doing something commendable in making sure to recognize this group. It's just...for Ethan, it was more like facing a punishment. Or at least a difficult homework assignment.

It reminded me of the time my reward for high honors in my small private school was going out to lunch. Everyone else at the lunch turned out to be older than me. Torture. Then there was the perfect attendance dinner in 9th grade in which I was assigned to sit at a table with a girl who hated me. I still shudder.

We got to the school and followed the smells of pancakes down to his math/science teacher's classroom. The kids were sitting around a table. Ethan lurked at the door, pacing and staring intently at a bulletin board. "Don't make me go in," he pleaded.

I felt simultaneously bad while knowing I had to give him that gentle shove in. It might be harder for him than any other kid, and we were compassionate about that, but -- he's a not quite typical kid in a typical world. He will face these situations again. We have to keep encouraging to take another step, to make the harder choice.

It's not just him. It's all of us. It's learning how to do something less instantly gratifying now to help us gain something much greater for the future. I have so much to learn, when it comes to this lesson.

That afternoon Ethan came home gushing. "The pancakes were CHOCOLATE CHIP!' he announced. "They were so good! I loved that breakfast!"

For a moment, I felt a little smug. "Now aren't you glad you went?" I asked.

"Well...kind of. But I still didn't really like it," he said. "Can I PLEASE have my bagel tomorrow?" he pleaded.

The reward really hadn't been a reward. Yet it was -- one a little less tangible but rather part of a very long process of laying building blocks for life.

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.