Sunday, September 17, 2017

Full Disclosure

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

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

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

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

Here's one, for starters.




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

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


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


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

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

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

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

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

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












Tuesday, September 5, 2017

Finding the Best (Not Perfect) Option

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

























Tuesday, August 22, 2017

Screens: An Epic Battle

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

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

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

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

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

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

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

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

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

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

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

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

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

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






















Friday, August 4, 2017

Career Plans

Ethan has decided that he wants to become a nurse.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"What?"

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

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


























Sunday, July 23, 2017

What To Do When Your Child is Diagnosed

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

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

1. Stop and take a deep breath.

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

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

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

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

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

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

3. Focus on connecting.

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

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

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

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


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












Monday, July 3, 2017

Empathy Overload



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

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

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

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

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

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

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

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

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

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

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

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

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

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



























Sunday, June 11, 2017

Seeing Stars


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

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

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

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

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

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

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

I think so.

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

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

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

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

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