Thursday, July 20, 2017

The Days Before Surgery

In the days before a major surgery, we fall into an uneasy rhythm. Neither of us really sleeps well. One of us is worried about the waiting and then the caregiving and then the weeks and weeks of single parenting. The other of us tries to alleviate his fears about all that could go wrong by working overtime in futile attempts to do all the things that need to be done while also nursing an increasingly uncooperative back. Pain and guilt and disappointment are not insignificant factors in the calculus of our arguments in this week before surgery.

I'd be lying if I said that the dominant emotion I feel leading up to surgery isn't anger. There's an anger bordering on rage that percolates in the back of my mind and settles into my stomach in ways I never fully anticipate, and I fail to suppress it completely. At unexpected moments, it spills out onto Ren and the kids, paving the way for guilt and fear to coat the nooks and crannies of my consciousness.

The thing no one tells you about being a caregiver is that it will make you mad, and it's an anger that has no place to go. I want to be mad at Ren for having such a shitty spine and for convincing me that he would always be the healthy part of our "in sickness and in health." I want to be mad at the kids for not rising to the impossibly high levels of cooperation and performance that times like this require. I want to be mad at friends and family who don't reach out or offer to help. I want to be mad at all of you whose lives aren't completely upended every 6 to 18 months and who can imagine what the future will look like well enough to plan for it. But, I know this anger is inappropriate, so I try to distract myself with mindless activities. I spend too much time on Facebook and look for reasons to run useless errands. I obsess about stupid stuff. I pick fights with Ren.

Do you know how to remove a blood drain? Can you tell the difference between a skin irritation caused by adhesive and the beginnings of a wound infection? When is lethargy the sign someone is exhausted from major surgery and its recovery and when is it a sign of something more serious? Does unexplained pain merit a trip to convenient care, or does it mean you should go straight to the ER? What about a cough? Is it allergies? A cold? Or the beginning of so-call hospital induced pneumonia? These and many more are the kinds of questions I am expected to be able to answer when I am put in charge of the care of a person who's just had another major surgery, and, while the surgeon, your primary doctor, and the hospital are great at making sure you're well enough not to die on the operating table, they become surprisingly hands off once you're sent home. I suspect that maybe what I am angriest at is a healthcare system that sends people home after major surgeries--which are benignly referred to as "procedures"--while trying to convince them that they'd be "more comfortable" at home or that short hospital stays are "safer," a healthcare system, coincidentally, that also provides so little support for families of kids with special needs that a major health crisis like this makes it nearly impossible to move forward. But, I'm not supposed to be political. This is a humor blog after all, so forget I mentioned it.

By the day of surgery, I will reign in all of these frustrations and fears, and I will sit with Ren for hours as they shave and prick and pull and ask dozens of the same questions. Then, I will watch as they use a marker to map their plan on his back like a football coach diagramming plays. When they wheel him away already hooked to an IV with his head in a surgical hat, I will walk to the waiting room and wait. As the hours pass, I will struggle but ultimately fail to suppress my anxieties. During the impossibly short few days he stays in the hospital, I will keep him company and advocate fiercely for him. On day four (!!), he will be pushed out in a wheelchair, helped into the car, and propped on pillows, and I will drive him home, slowly, avoiding bumps and taking the turns along the way carefully, hesitantly. Once we're home, I will support his full weight as he gingerly makes the seemingly epic journey from the garage to the bedroom where I will help him get comfortable in bed and where he will essentially stay for months until he is ready and able to rejoin the world of the living.

In the meantime, life will go on. The kids and I will figure out how to find joy and have fun and include Ren where we can. I will remember what it's like not to feel so raw and vulnerable. And,(hopefully, most likely, assuredly) I will find my sense of humor again.

Monday, June 12, 2017

On Getting Pummeled

Growing up in a small town in the rural Midwest, not surprisingly, I didn't get into many fist fights. In fact, I was only ever punched once, by a kid named Dallas who should've been in 8th grade, not with me in 6th. Dallas stood beside me in lunch line. I was the last name in the alphabet, and he was the first kid to transfer in that year. When Dallas wasn't in detention or in-school suspension, he stood next to me in line and sat next to me at lunch.

Dallas and I didn't have much in common, so we rarely spoke to one another. He sought to be (and on some level was) an intimidating kid. You'd think, then, that I would give Dallas his space. And, normally, I did, but you guys, 6th grade was rough; I was in a class with all sorts of kids who got into all sorts of trouble, and on this particular day, I guess I'd had enough. Because, when Dallas started cursing because our line wasn't getting picked to go in for lunch, I turned to him and pointed out that if he'd shut up, our chances of going would increase considerably. He responded by shoving me, so I shoved him back. That's when he clocked me.

I don't know if you've ever been punched in the face, but it's a weird sensation: CONK! That's what it sounds like, followed by an odd ringing sound (I mean, I guess I understand the phrase "getting your bell rung" better thanks to Dallas). I was less hurt than really, really shocked that he actually hit me. Sure, I ended up with a brushed cheek and a stiff jaw, but more than that I walked away with a visceral understanding of just how unnatural violence is. Bodies aren't meant to be punched, and there is no way to reason around the violation that occurs when that line is crossed.

*****

Our bodies have limits; this is the lesson I've been reminded of over and over again over the past few years. We are not Wile E Coyote who can peel himself up off the road, re-inflate, and jump back into the chase. In fact, these bodies we inhabit are very, very fragile. Ren's brother, full of life one minute, expired on the sidewalk the next. Ren, able to run a marathon one night and unable to walk the next day. The body, it betrays us.

Part of why I am thinking about this is because I have watched the man who used to run to the peak of the mountain to check out the view before running down to get me and take me along to enjoy it be completely waylaid by his own body. Ren has literally shrunk before my eyes, bending further and further forward as his spine slowly but surely gives up on him. We have been together for 20 years, and this tragic saga has dominated the last six. It used to be that the most stressful part of the saga of the spine was that we didn't know what would happen next--it was like watching a super slow-motion chain-reaction train wreck with no end in sight. Now, though, the nature of our tragedy is clear. Ren's back is done; he will have a fusion of the thoracic spine, T1-T12--twelve full levels compared to the two and three levels of his previous two fusions. The surgery itself will take 6-7 hours with another 2-3 hours in the recovery room. After that, it could take 1-2 years before he is "back to normal," though we all know that normal is long gone.

I don't know how to describe this disruption to our lives as anything other than violent. The children no longer remember life before Dad's back went south. They don't remember the hiking, the running, the playing. They don't remember Dad not being in pain. It's hard not to feel mad and sad and jealous of all the people around us who are going about their lives raising children and building amazing (not tragic) memories. Surgery #6 will stop us in our tracks. I will become a single mom. Ren will miss months of our children's lives.

The other reason I've been thinking a lot about violence and the limits of the human body is the very real struggle we are having with aggressive meltdowns. I've written about autism and meltdowns many times before (here, here, and here, for example), but this is different. Those meltdowns tested my mental stamina. These test me physically. And, what I have learned is that I am not strong enough. Because I am mom, I am the recipient of most of the aggressive meltdowns that happen at our house. And, because I am not a cartoon mom, I end up with scratches and bruises and wake up with aches and pains. 

Since I am not strong enough to defend myself, Ren has been intervening. Perhaps the greatest irony of all is that despite his crappy spine, Ren is still stronger than me. When a meltdown starts, using some story about Power Rangers or superheroes or Godzilla as a distraction, he swoops in and employs a simple judo move to neutralize the situation. Then he sits calmly and waits for the episode to pass. It makes me mad that I am not strong enough to hold my own; I hate that I crumble after a few good right hooks. With a spine like his, Ren shouldn't be wrestling on my behalf.

We are working hard to get to the other side of this aggressive meltdown phase before surgery #6 at the end of July. These days, I have a pretty good idea of my outer limits. It scares me to know that the challenges on the near horizon far exceed them. People often say that God doesn't give you more than you can handle. I think I used to believe this meant that the struggles helped us build character. I don't really believe that any more. Because, whether I have the strength to face the impending challenges or not, they are coming, and I know that I have no choice but to put my head down and walk into the massive raging hurricane, one foot steadily in front of the other.

Sunday, June 4, 2017

Lost, In Tokyo

I'm in Tokyo, it's dawn
and it's raining hallelujahs
down the bright-lit neon canyons
along the sidewalks of Shibuya
I'm trying to take a stance
and rise above my contradictions
but I'm just a bunch of words in pants
and most of those are fiction

                                   "Long Strange Golden Road" -- Waterboys

**Warning -- This post is about mental health issues so if that makes you uncomfortable, well, now you know.**

When I was 18 and less than 2 weeks away from my first trip to Japan, I tore my ACL playing in the high school semi-state finals. In a very short time span, I abruptly ended my tennis career, scheduled an ACL reconstruction surgery, graduated from high school, and flew off to a country about which I knew next to nothing. In Japan, I fell apart so terrifically that I wound up crying most days and paid an extraordinary amount of money to come home a few days early.

Looking back, that was the beginning of it.

Not long after, I started college, and I spent the next four years trying to outwit my brain chemistry. I tried religion, music, theater, writing, therapy, academic overachievement, sports. I learned how to compartmentalize and only allowed myself to think about my studies. And, in the end, I graduated Summa Cum Laude with a list of awards and achievements long enough to make anyone blush. But none of that mattered as much as the words the head of the campus counseling center--my therapist and my mentor for the various social issues education projects I spearheaded--said to me right before I graduated. "Moe," she said, "sometimes you can do everything, and it is still not enough. Sometimes, it's really just chemical." So, I relented and went on medication and was amazed by how quickly the dark fog lifted from the recesses of my brain and light filtered back into the world before my eyes.

I stayed on the medication for a long time. But, then we wanted to have kids and so I went off of it. Now that I knew what depression looked like, I could manage the ebbs and flows of life. And, when the darkness started to creep into my peripheral view, I knew to exercise more, read good books, eat well, sleep better, and cut out the diet coke. I knew to write and to reach out to friends because I knew that all of these things would help me cast my anchor deep enough to steady me.

And, it worked for a long, long time. It worked through three pregnancies and babies, through three shoulder and five spine surgeries, through grad school and job hunting and multiple moves. It worked through health scares and unwanted diagnoses.

But then one day, it didn't anymore. A month or so ago, the bottom dropped out, and like Wile E. Coyote, I was running so fast, it took me a minute to realize what was going on before I plummeted to the ground. I've got experience with this and resources, so I'll be fine, but the suddenness of it makes me mad. At first, I just really couldn't believe that my brain chemistry would betray me like this. Now that I know it can and will, I know what to do and will do it. But since it's fresh in my mind, allow me to describe to you what depression feels like. I think it's important that you know.

  • Depression feels like you are on a planet that unexpectedly gets knocked from its perfect orbit sending you careening out into space at breakneck speed as you hold on for dear life with the very tips of your fingers. Every day, you think about just letting go.
  • It's being in the largest city in the world with people swarming all around and feeling like you don't know a single soul. It's being completely invisible in a crowd with a ringing in your ears that makes you feel like you're in a deep, deep cavern, more alien than human, and so far inside your head that you're not sure of the way out.
  • It's knowing that things will get better but not really believing it.
  • It's panic rising up into your throat, clutching at your chest and catching your breath, threatening to choke you as tears well in your eyes for no good reason at all.
  • It's speeding along the road and thinking seriously about veering to the left into the trees or the valley below. Or, waiting for the train and imagining yourself scaling the platform door and jumping headlong onto the track as it rushes into the station. It's wanting to step off the curb into an oncoming bus. It's being able to imagine the feel of the cold, hard tip of a pistol on your temple and longing to pull the trigger. It's knowing that all of these thoughts are lies but feeling drawn in by them just the same.
  • It's working hard and moving fast and being afraid to slow down because you know the depression that threatens to overwhelm you nips hungrily at your heels. It's choosing to live at an insane pace with too much caffeine and too little sleep even though you know you can't sustain it. 

Depression lies. It takes away your ability to be amazed, to find humor, to have hope. It exhausts you. If you are going through this, know you are not alone. You are not weak or a failure. In fact, I'd argue that you probably have more damn grit than anyone in the room. Cast your anchor and find others willing to help steady you. All you need is the tiniest sliver of light in the darkness.

There have been moments over the past few weeks for which I am truly grateful--beautiful sunrises, good meals, a couple of conversations in bars with friends who have reminded me of the beauty and joy and amazement all around me. These things have helped me remember what makes me happy--fresh mountain air, beauty in the chaos, a clever turn of phrase, unexpected friendships, irony, untethered conversations. Twenty five years ago, I would have never cast my anchor so willingly. Today, I know I have no choice.

I don't want this blog to be just a bunch of words in pants. I'm too tired to keep spinning my fictions. We need to be able to talk about these things. If we can't, then what are we doing here?

Monday, May 15, 2017

The Great Flood of 2017

I take a quick shower. Start to finish, 7 minutes tops. Still, you'd be amazed by how much can go wrong during that short amount of time. In fact, I am pretty sure that each time I cross the threshold into the bathroom, I trip some sort of wire in the time-space continuum. It is as if time stops and then stretches so that each minute lasts just short of eternity. Multiple epic sagas occur during the brief time I am occupied with my personal hygiene and self care.

Since practically every shower I've taken since 2004 has been interrupted by someone or something, I have gotten pretty adept at tuning out the mayhem that invariably occurs. This is why it seemed so strange to hear ear-rending screams the other day as I climbed out of the shower. Stranger, the screams were coming from Ren. Ren is the kind of guy who encounters a snake in the basement and decides the best course of action is to catch it with chopsticks and keep it as a family pet, so when I heard him screaming I knew it couldn't be good.

Grabbing a towel, I rushed out of the bathroom without even drying myself. I found him furiously wiping the floor in the guest bathroom. Clearly, this was no simple potty accident. But, before I could comprehend what had happened, Ren shouted, "Stow flooded the bathroom. Check the basement!!!!"

I'd only been gone for 7 minutes. When I went to the shower, the kids were dressed, the bentos had been made, and everyone was calmly eating breakfast. Now there was utter chaos.

We had 15 minutes to bus time, so I barked directions to Sky and Pink as I threw on some clothes and ran down the steps. "Get your teeth brushed. Pack your backpacks. Keep Stow out of trouble." Normally instructions like these go entirely unheeded, but the kids were suddenly unnaturally compliant.

Downstairs, I hurried from room to room trying to locate where the tremendous amount of water (WHY is there SO MUCH WATER?!?!) was going. I started in the bathroom and made my way from room to room checking the most logical places for the water to drain. Regret about the decision to drywall the ceilings consumed me. I heard the water before I saw it. It sounded a little like someone was dumping buckets from the ceiling. In my head, I was finding it hard to calculate the cost of repair.

When I finally found the damage, I was amazed. I was amazed by colossal flood Stow had caused, but I was even more amazed by the fact that the massive amounts of water all poured down just inside the doorway to the unfinished storage room. I mean, an inch further to the west and the water would have pooled inside the drywall causing it to crumble down onto the new-ish carpet and furniture in the finished part of the basement. More surprising, even though the water was spraying everywhere, it sprayed in such a way that only unimportant and easily dried things got wet. Mere centimeters from a puddle on the table, for example, a pile of the kids' best artwork was completely dry. I got up on a chair and reached my hand over the top of the storage room door frame into the finished part of the ceiling; besides a small bit of wet insulation, it was completely dry. I ripped out the wet part and went in search of the wet vac.

In the end, the whole catastrophe lasted about 30 minutes. The kids got to the bus on time, and after drying up the bathroom cabinets and floor and relocating all the dehumidifiers and heaters in the house to the basement, I left Ren and Sky to finish vacuuming up the water in the storage room. As I drove to work, only minutes later than I might have been without the flood, I thought about how this great flood so quickly resolved was probably a perfect metaphor for something--though for what, I wasn't entirely sure.

See, the other piece of the story is this: things are falling apart again. Our literal flood symbolizes a figurative one that threatens to overwhelm us. The week that Stow flooded the bathroom, we started pretty intensive in-home therapy to try to get a better handle on the flare in behavioral challenges that feel pretty insurmountable right now. That week also Ren finally acknowledged that, yes, his back really, really hurts. I'd been suspecting this for awhile, but he wasn't ready to admit it until he could no longer stand the pain. The fact that Ren panicked so quickly and worked so slowly to stem Stow's flood was irrefutable proof to me that the back is probably past the point of no return.

So, yeah, one way to read Stow's bathroom flood is as a sign that we are incredibly luck and that everything will be okay. But, I imagine the more accurate reading of it is as a sign that the relative peace that came from 12 straight months of a cooperative spine has come to an end. We're about to hit some rough terrain again, and Stow's flood was just the beginning.


Thursday, May 4, 2017

Stow's Epic Journey

It turns out that having two kids on the autism spectrum can make life pretty crazy at times. Among the interventions we've used on and off over the years is behavioral therapy. These days, we're fortunate to live near one of the best play therapy centers around, so both Stow and Sky work with therapists there. Because our particular combination of poor processing, anxiety, and sensory overload together with a considerable age and developmental gap between Sky and Stow can make for some challenging parenting, I often find myself texting the therapists between sessions.

One day a couple of weeks ago, I was engaged in a text exchange as I waited for Pink to finish checking out books at the local library. In it, I was describing to the therapist how life at our house is somewhere between "survival of the fittest" and Lord of the Flies. Just as I typed Lord of the Flies, though, I was interrupted by Pink.  She seemed upset.

"Stow's here!" she exclaimed.

Lord of the Flies...

You know how when you get news that makes no sense because it's so far out of context that you can't place it? Well, that's what this was like. Since I KNEW that Stow was at home doing his Superkids homework on the computer with Ren and Sky, I knew he couldn't ALSO be at the library. It was impossible--which clearly meant that Pink was lying, which really didn't make any sense. But, before I could figure why Pink would concoct such an outrageous story, Stow ran up to me and gave me a big bear hug.

I've never been more off put by a hug in my life. It's hard to describe the feeling one gets when one's 5 year-old appears in a place he's not supposed to be. I sought a rational explanation:

"Is Daddy in the car?" I asked.

"No."

"Then, how did you get here?" I followed up, not really wanting to hear the answer.

"I rode my bike!" he replied proudly.

Stow has only recently mastered the art of riding without training wheels. This day, this ride was probably only the fifth one he's ever taken without them. In order to get to the library, Stow would have had to leave the relative safety of our neighborhood and ride about 3/4 of a mile along a very busy road that has no sidewalk and minimal shoulder. Even Sky, who's 12 and who has been riding a bike for years now, is too nervous to ride his bike along that road. Though Stow was standing in front of me telling me he'd ridden his bike to the library, I found it hard to believe.

Struck with a sudden wave of nausea, I calmly stood up, took Stow by the hand, told Pink to meet us at the car, and left the library. Just outside the door, I found Stow's bike and helmet.

A little bike for such a big journey.
Still holding Stow's hand with my left hand, I picked the bike and helmet up with my right, and without a word, put them into the trunk of my car. Stow was simultaneously giddy with the adrenaline rush of his big adventure and puzzled by my response to him. He seemed to expect me to be happy to see him and maybe even proud that he'd gotten so good on his bike.

For a few moments, I couldn't figure out how to respond to this unexpected feat. But, once I regained my composure, I told Stow that I was very unhappy with his dangerous choice and that his bike would go into time out when we got home. He didn't seem to understand why I was reacting that way, so the conversation went like this:

"Stow, you can never, ever do that again. That was very dangerous!"

"It's okay. I am brave. I wasn't scared, even on the hard part. I just told myself, 'You can do it!'"

"But that's a busy street, and you are not very tall. What if someone didn't see you and hit you?"

"Don't worry, Mommy. The people were nice. They stopped for me."

Not surprisingly, this exchange didn't do much to calm my upset stomach or dissipate the growing sense of doom that crowded in around me. Stow had never just left the house before.  He'd never ridden his bike out of the driveway, much less out of the neighborhood. This act was so unprecedented, Ren and I struggled to get him to understand why he couldn't just leave like that.

At home, Ren and I explained that being brave and taking unnecessary risks were not the same thing. We talked about Spiderman and Power Rangers and all the good guys in Star Wars and every other superhero Stow loves, and using their examples, we explained how they were always only brave in order to help others. We told him that no superhero would do something dangerous unless he had no other choice. I'm not sure how much he understood, but I hope a least little.

In the end, we made him repeat the bike rules multiple times--

1) always wear a helmet
2) don't leave the driveway without permission
3) never ride in the middle of the road.

And, then we locked up his bike.

Grounded.
Ren and I have been co-parenting for the better part of 20 years. Stow is our fourth child. Before Stow, I think Ren and I had naively come to believe we knew what we were doing. Turns out maybe we don't.






Wednesday, April 26, 2017

Grumpy Yogurt Lady

I got yelled at in Aldi yesterday. It was no big deal, really--some lady just calling me out for what she perceived to be my kid's bad behavior (and my lack of fitness as a parent, no doubt) when Stow kicked a container of yogurt that someone else had dropped and left behind in a small, enticing puddle of creamy white. After he kicked it, Stow dashed in the other direction before I could either stop him or pick up the messy container. Not knowing whether he would stop at the door, I ran after him. That's when she yelled at me for dropping and leaving the container on the floor.

She couldn't know that the yogurt container was already there or that my focus was on keeping Stow from picking up the container and getting yogurt on his hands because I know it would make him sick if he ate any of it. She couldn't know that we don't even shop in the dairy section due to all of our food allergies. She couldn't know that I was much more worried about Stow careening away from me and into other customers or out onto the street than I was about a stray yogurt container. She couldn't know that the spilt yogurt on the floor mere feet from the check out lane was the last thing I needed to see at the end of a harrowing grocery store visit. She couldn't know that I was shopping with Stow because currently the best way to keep him calm and safe is to keep him close to me, even if it means taking him to the grocery store at the end of a long day. She couldn't know that Stow feels keenly the disdain of others even if he doesn't quite know how to make sense of or control all that's happening outside and within him right now.

All she knows is that she saw some rude lady and her bratty kid throw/drop a container of yogurt on the ground and then leave it there. So, she yelled down the aisle at me, "Ma'am?! Aren't you going to take this?" before angrily picking it up and thrusting it into the closest refrigerator. As I ran after Stow, I tried to explain, but she didn't want to hear it. Fortunately, Stow stopped at the end of the aisle, and when he realized she'd put the yogurt in the wrong place agreed to walk with me to get it and then to hand it off to a store employee. Unfortunately, but not surprisingly, all she chose to see as I fought (and sometimes failed) to help Stow keep it together through checkout and bagging was an unruly kid and his ineffective mother.

Stow woke me up Sunday morning with this picture. "This is me," he said. "I'm a monster."
It's been awhile since I let the disapproving stares get to me. Part of that is because now that Sky is older, it has been awhile since I've had complete strangers judge me for the misbehavior of my kid. But mainly it's because I am feeling pretty raw about how things have been going lately. I wish Stow wasn't struggling the way he's struggling, and I want to help get him through this rough patch with as little heartbreak as possible.

The grumpy yogurt lady made me mad.  And sad. But, here's the thing: her reaction actually helped me remember something pretty important that I was starting to forget. She reminded me that my expectations and her expectations and your expectations don't mean much right now because right now is about breathing deep, drawing in close, and letting a little boy who's feeling pretty lost know that we've got his back no matter what.

Thursday, April 13, 2017

Rock Bottom

In honor of April and Autism Awareness, here's a little story about what autism is like at our house...

A few weeks ago I read this article that references this study. The headline "Austistic Children 40 Times More Likely to Die from Injury, Study Shows" was bad enough, but, by far, the worst part was the statistics quoted in the study. These researchers at Columbia found that the average lifespan for individuals (in their study) with autism was HALF that of non-autistic individuals, or 36 years compared to 72 years. When I first read the article and study, I figured these differences had to do with the way the numbers were being manipulated or the way the study was being reported out (I'm a literature person, after all, so I think a lot about the construction of media narratives).

But, then I looked closer at the study and thought back over my own experiences and realized that maybe things really are this scary for families that live with autism. The weekend before this article came out, for example, Stow almost drowned THREE times during our visit to an indoor waterpark. Even though he'd had 8 weeks of private swim lessons focused specifically on how to be safe in the water (including repeated practice of getting onto his back, floating face up, and calling for help), and even though he had access to a life jacket, AND even though Ren and I were within feet of him each time and warning him as he headed into danger, he still got in over his head (in the EXACT SAME SPOT!!!) three times. The only reason he didn't drown was because we were right there, ready to jump into the pool and pull him out of the water. But each of the three times, he was truly surprised by his near drowning.

I thought about the indoor water park when I worked through my thoughts on the CNN article, and gradually it dawned on me that I was only just beginning to understand what Ren and I are up against. I know it sounds strange, but I became aware, in ways that hadn't quite solidified in my brain before, that Stow is not inherently safe.

"Koi" by Sky. Completely unrelated (although the water is a nice tie-in) to the post but a nice diversion from a grim discussion.
I've got six (well, technically 12, but is has only been 6 since the first diagnosis) years' experience as an ASD parent. I should KNOW what I am doing. But, in all those years before and after Sky's diagnosis, I never once worried about whether I could keep him safe. Sky's ASD runs along the obsession, stim, talk-incessantly-while-totally-oblivious-to-social-cues gamut. I mean, sure, I worried that he would be bullied and that the world might not accept him, but I never worried about whether he was at risk of severe physical harm. But with Stow, we need to figure out how to parent completely differently as we are constantly trying to anticipate and reduce risk. I thought dealing with non-stop discussions of Star Wars was exhausting, but it pales in comparison to figuring out how to keep tabs on a risk-taking wanderer who has little regard for self-preservation and with whom it's not terribly easy to reason.

Stow's ability to be destructive or to create risk for himself is simultaneously awe-inspiring and maddening. This week, for example, he figured out how to unlatch the screen on his second-floor bedroom window. As a result, he now delights in unlatching the hooks on the screen and watching it plummet to the ground below. The first time he did it, we thought it was an accident. The second time, we assumed he liked the thrill of watching screen drop but would curb his risky behavior once we explained to him the dangers involved. The third time he took out the screen, we realized this was now a thing and that we had to intervene. Apparently, life is freer without the encumbrances of a screen on the window because today (less than 48-hours after figuring out how to take off the screen) despite our near-constant surveillance, Stow managed to open the window, pop out the screen, and sit on the window sill to take a leak. OF COURSE this is dangerous, but we had no idea he would do that until he did it. Ren is installing new safety locks as I type. But, I stand amazed by how quickly and persistently Stow courts danger, and I have no illusions that these new locks are the answer to our problems. A kid intent on exploration without any regard to personal safety will find other ways.

Last week, Stow discovered that if he runs out of the house as fast as he can and jumps on his kick scooter, no one can catch him as he rides pell-mell toward the main road. So far, he's stopped without venturing into the traffic, but we have no illusions he will continue to make that choice. We're working on strategies. Unfortunately, there aren't a lot of contingency plans for an old man with a bad spine and two kids who aren't quite old enough to control their rambunctious younger brother who seems hellbent on self-destruction. Our current strategy is to keep him inside and distract him with the iPad (it's a horrible strategy).

We also utilize safe spaces. His room is currently not one of those (though it should be soon). The corner of our living room is his other calm-down/safe space. A few days ago, when he was there, he did considerable damage to the door and wall, gouging out chicken scratch messages Tom-Hanks-in-Castaway-style using the pressed souvenir penny we'd bought for him at the zoo (WOW, that 51-cent bargain souvenir turned out not to be a bargain after all!!).

"Musings." Door carving by Stow. From a distance, it's not so bad. Up close, it's an impressive series of deep scratches. 
"2+2=4." Wall carving by Stow. Ironically, once I figured out those were twos instead of backwards fives, I felt a lot better about the fact he was practicing math facts on the wall.
So, I don't know you guys. I guess I've got nothing after all. None of what I thought I had figured out applies to where we are now. This is unchartered and unnerving territory.  It's exhausting and forces us to draw from reserves we didn't even know we had (and that we probably shouldn't be drawing from). But, we know our only option is to dig deep and hope we don't reach the rock bottom of our reserves before things change and life becomes more sane again.


UPDATE #1:
Update: 2:30 p.m. April 13th. Now, let's see how long this lasts.
(Also, I don't love that it's called a Window Warden, but oh well.)

UPDATE #2:

April 13th, 3:30 p.m.
Stow has figured out how to break into his brother's room and climb out his window onto the tiny roof. More window locks on the way!

UPDATE #3

April 19th, 4:15 p.m.
Stow has demonstrated that I should never--not ever--think I know how hard things can be or claim to understand the outer limits of chaos. On the bright side, I feel like I now have a much better grasp of the phrase "infinite possibilities."



Wednesday, March 8, 2017

The Big Day

Today was a big day.

Today Sky graduated from his IEP.* The path to diagnosis and then from getting the diagnosis to obtaining help at school was long and arduous, so I admit that part of me hesitated when Sky's case worker suggested we schedule an exit meeting. Six years ago, when I had to fight tenaciously for months just to get support for him at school, I never imagined a time would come when he would no longer need that support.

I mean...
I still remember being told he couldn't participate in the school field trips unless I could take off work to go with him since his teachers didn't feel like they could handle him. 
I remember the little boy who repeatedly got in trouble for taking things literally and misunderstanding every single shade of gray. 
I remember the preschooler who missed the bulk of the teacher's instructions because he didn't know she was talking to him or couldn't process what she was saying. 
I remember the notes from Sky's first formal school evaluation that elucidated in excruciating (yet somehow humorous) detail how he mimicked the sounds of various explosions throughout instruction time, clearly disturbing the children  around him even as he kept on task. 
I remember how that same evaluation described the way that he jumped up during class and ran around his chair three times before sitting back down again. 
I remember the kindergartner who climbed over backs and stepped on fingers during circle time in order to pick up something the teacher dropped so he could return it to her, not realizing he'd hurt three of his classmates in his effort to help. 
I remember the boy who never made it through PE or recess without bumping into other kids or knocking someone over.  
I remember when he perseverated** to the point of making his classmate cry, 
I remember the kid who couldn't go to the bathroom without disrupting the entire hallway as he listened to his voice reverberate off the tile floors and the metal stalls. 
I remember creating social stories about how to walk through the classroom to turn in a paper without wreaking seven kinds of havoc as he made his way from his desk to the teacher's. 
I remember worrying, I mean really worrying, that Sky's autism would forever prevent him from demonstrating the brilliance we knew was in there but that was so often hidden by all the other stuff. 
I remember the hundreds (maybe even thousands) of times other kids accusingly announced to me this, that, or the other wrong that Sky had done. 
I remember how terribly hard it was to send Sky to school each day knowing full well he wasn't equipped to handle all the world would throw at him.
Sky's artwork, hanging in the hallway at school
 I remember that kid very, very well. But, that's not who Sky is now.
The Sky who exited his IEP today is the king of clever jokes and spot on physical humor. 
He's a self-advocate who appropriately seeks guidance when he doesn't understand instruction or when he fears he didn't quite get what he should be doing. 
He's an artist respected by his peers for his immense creativity. 
He's an amazing story teller. 
He's an avid reader.
He works comfortably in large and small groups. 
He's an all-A student in honors classes. 
He's a kid would can control his sound effects and take turns in class discussion without perseverating on particular points or concerns. 
He's a budding pianist. 
He's a good friend who has a small group of close pals but who seems to be known and well-liked by many.
In short, Sky is a kid who no longer needs an IEP. So, for Sky, today was no big deal. Aside from the fact that his mom and dad brought him to school early so they could meet with some of his teachers, his principal, and the other folks on his IEP team, this day was pretty much like every other day. Sky did what he always does--he went to classes and hung with friends; he worked hard and lived large.

Another piece hanging in a display case at school.
Today might not have been a big day for Sky, but it was a huge one for me. Because, today I had to learn how to willingly let go of something for which I'd fought so hard. I had to tell myself that these are the fruits of Sky's hard work, and that we should cherish them. I had to remind myself that, though Sky still struggles, he is doing fabulously, and he will be fine. I had to acknowledge that this is a journey to destinations unknown and that that's ok.

I had to trust the process.

None of this comes easily for me, but I am learning, and I will be forever grateful for the all of the therapists and teachers and friends who have helped me figure things out along the way. Today is a big day. It's a good day. But, I suspect it is only one of many great days to come.



______________________________________________




* IEP stands for Individualized Education Plan. It is "a written document that's developed for each public school child who is eligible for special education. The IEP is created through a team effort and reviewed at least once a year. Before an IEP can be written, your child must be eligible for special education. By federal law, a multidisciplinary team must determine that (1) she's a child with a disability, and (2) she requires special education and related services to benefit from general education program." (Definition taken from: http://www.greatschools.org/gk/articles/what-is-an-iep/)

** Perseverate: to repeat something insistently or redundantly; the continuation of something (such as a word or an idea) usually to an exceptional degree or beyond a desired point (definitions taken from dictionary.com and Merriam-Webster).

Sunday, February 19, 2017

On Starting the Journey All Over Again

Stow got an autism spectrum diagnosis.

Part of me feels compelled to type that line over and over and over again because it feels big enough to engulf everything. I mean, how do you go on from learning you have a second child on the spectrum despite all the work you (and he) have been doing?

The other part of me feels a strange sense of relief. Ren and I have suspected autism for awhile, even though Stow is much different than Sky was at this age, and even though he has responded well to various interventions we've tried. Since Stow was a baby, he has done or is doing developmental therapy, occupational therapy, physical therapy, speech therapy, hippotherapy, chiropractic therapy, social group, and behavioral therapy. He's also been on some form or another of a restricted diet to reduce the various side effects some foods seem to cause. Most of these things have helped, and many of his therapists and teachers tell us that he doesn't seem like other kids they've known who were on the autism spectrum.

But, nothing has ever come easy for Stow. He's been delayed on pretty much every milestone and has had to work hard to reach a lot of them. He struggles with hypersensitivity to some things and hyposensitivity to others. He has a hard time reading social situations and can often overreact or ignore. Classmates and friends are leery of him because he doesn't respond in predictable ways. He has daily meltdowns. And when he's nervous or happy or sad or scared, he struggles to process what people say to him and put his thoughts into words, and the breakdown in his language can seem pretty catastrophic to him (and therefore to the rest of us).

He gets everything eventually!
Up until the diagnosis, one of my biggest worries (honestly) was that all of the knowledge we'd gained from parenting Sky and all the resultant interventions we'd pursued with Stow would actually keep him from getting a needed diagnosis. I know that sounds strange. What I mean is that even though Stow ultimately does okay, he still struggles a lot; he goes from being fine to needing a ton of support to being fine and then needing a ton of support again. Our job as his parents is to make sure he's getting what he needs when he needs it. Having an appropriate diagnosis can help with that.

Despite all we've done and despite all the ways Stow has managed to scrap his way to generally being on track developmentally, Ren and I both still felt like we didn't quite have Stow figured out. That's why we followed through with the appointment with the specialist ten days ago. I'm not sure what I was expecting when we went, but I guess I was hoping for a little bit of magic, that maybe the appointment would uncover some kind of heretofore unseen disorder that could be easily treated with some new (to us) and exciting therapy. A girl can hope, right?

The autism diagnosis tells us our instincts are in tact, and I guess there's something comforting in that. But, we are a bit overwhelmed as we now realize how much work we still have to do. Just like with Sky's diagnosis, this one didn't come with a roadmap, so the way forward isn't entirely clear. There is a lot we have to figure out on our own. Just thinking about it can be exhausting. Since we've done it before, I know Ren and I are up for the challenges of this journey. I was just really hoping we wouldn't have to take it!