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.



















Thursday, June 1, 2017

Little, Beautiful Victories

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

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

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

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

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

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

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



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

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

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

Friday, May 12, 2017

Addicted to Tragedy

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

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

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

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

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

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

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

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


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

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

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











Monday, May 1, 2017

Connect Four: Encouraging Flexibility

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

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

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

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

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

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

"Exactly," I replied.

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

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

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

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

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

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

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

Yup. Another game, another lesson for another day.