Questions for Parents of Neurotypical Kids

I have never raised a neurotypical child**, and I suspect parents of children who are not neuro-spicy have taken a very different path on the journey of parenting. Normally, I don't think about this, but it is end of the school year which means school art fairs and concerts, etc. In settings like this with many other parents and same-age peers around, I begin to suspect there might be some dissimilarities between what happens at our house and what happens in other homes.*** 

But, I don't know that for sure, so I created this list (off the top of my head) to see if my suspicions are true. I present to you Moe's questions for parents of neurotypical kids, the tween-teen version:

1) Do your children wear fleeces and hoodies well into the summer, even when it is above 80 degrees?

2) How many times do you address a child, who is in the same room, before receiving a response? 

3) How much do you know about Star Wars (the films and the various Lego sets that have come out since the early 2000s)?  Fall Out (the game and the TV series)? Tanks? Dragons? Paint colors? 

4) If a city has a subway or a train, are you obligated to ride it even if you don't have anywhere to go?

5) When you call your house, does your child answer and insist that you carry out a long, make-believe conversation either about what you want on your pizza ("Thanks for calling Pizza Hut. Can I take your order?") or what your emergency is ("911. What's your emergency?") Or, do they pick up the phone and sit in silence for a minute before saying, "Yeah?"

6) Do they start a conversation with you before they even get into the room and despite the fact you are in the middle of talking to someone else? Do they start talking about something they made up without realizing that you don't understand because you can't see into their head?

7) If they call or FaceTime you, do they start with hello or ask you how you are doing or do they just jump into to telling you why they are stressed or what they need from you?

8) Do you sometimes need to draw pictures to make sure everyone knows what you are talking about? Do you have to explain idioms? Or sometimes find yourself trying not to laugh when someone takes something so literally that it's absurd?

9) When you go to school concerts or other performances, do you have a stress response caused by memories of past concerts when your kid sang too loud or froze or refused to wear appropriate clothing?

10) Do you have a nagging sense of fear every time you drop them off at a party or any other informal gathering of their peers? Do they ever text you from a closet or from under a table because they are overwhelmed and want to be picked up ASAP?

11) What about school? Do you worry about them when they are there? How often do you get calls and emails from school? Weekly? Monthly? Never?

12) Do they come to you and ask for a squeeze or some other help so they can re-regulate?

13) How much time do you spend explaining to your children how to read non-verbal cues or to be able to understand why something they did upset someone?

14) How many times have their classmates or friends come to you to complain about what your child is doing? How many times have people glared at you or chided you for your failure to properly discipline your child?

15) Do they refuse to eat things because the texture isn't right? Do they refuse to wear certain clothing because it's too itchy, too tight, or too something else? Do they avoid showers because they don't like how the water on their body feels during the seconds between getting out of the shower and drying off with a towel? 

16) Do they refuse to go to certain areas of a store because the humming noise that you can't even hear is too loud for them to bear?

17) Do they avoid going into certain rooms in the house because they saw a bug there once? 

18) Do they get overwhelmed and shut down when you are in the middle of a conversation?

19) Do they get so absorbed into doing something that they won't come to dinner? 

20) Do they provide unwanted details about the workings of their digestive system WHILE they are still in the bathroom? Do they sometimes send pictures?

Twenty is a good stopping point even though I think I could probably go on forever! I suspect I know the answer to some of these questions, but I'd really like to hear from you all (parents of neurotypical AND neuro-spicy kids).

Writing these reminded me just how rich and interesting our lives are. I honestly wouldn't change a thing about my kids. What I would change is the world that isn't terribly welcoming of them. I wish for teachers, peers, family members, and strangers who don't judge my kids or mistreat them. Can you imagine a world where all kids are embraced for who they are and encouraged to grow in the ways that make the most sense to them? I hope we can get there some day. In the meantime, let's support each other by telling our stories!

Here is a picture of a cup of coffee, just because. 

**I'm not including Big Sissy here because I didn't have the opportunity to parent her until she was already as tween.

***Before I go any further, I want to state unequivocally that this is not a post about how I don't like autism and, therefore, my autistic children. Ditto ADHD. I feel like this should be obvious, but I have encountered comments in the past telling me that I don't accept my children for who they are. I do. And, I am also sure there are some real challenges in my kids' lives that they want people to know about and acknowledge. I don't post without consulting them.

Concussed

Here is what I posted to FB yesterday:

This is the text he sent to me after working the concession stand at the school dance Friday night; the text in which he excitedly asked me if he could volunteer to work at the Halloween party Saturday. He was so proud and happy, and I’m completely stuck on how something so good ended up so bad.

 
Stow went back to school Wednesday, and even though he still gets headaches and easily loses focus, he persevered (with lots of supports and breaks) until the end of the day. His resilience amazes me.

 
Though I can’t go into detail about what or how, we are making our way forward and doing everything we can to ensure that he is safe and that he is heard. I’m extremely grateful for all of the encouragement and kind words we received from everyone; they have made this all bearable.

 
So much of my advocacy for the kids is aimed at making sure their neurodiversity doesn’t put them at risk of being mistreated. Stow engages with others in ways that make sense to him, and I firmly believe it’s my job as a parent to help make the world he lives in less ablest, to move the needle toward making neurodivergence the norm.

 
Still, all of that advocacy, and I couldn’t keep him safe.

 
I might be stuck on this for awhile.

*****

These days, I'm up at night worried about how and when he will recover from the head trauma and what things will look like for him once he gets back to a more normal schedule. Any change is ALWAYS hard for him, and this time of year has traditionally been when he starts to struggle. Something about moving into the fall and holiday season. How long will it take for him to get back into the groove he was in? Will he get there at all?

But I am also having trouble letting go of the idea that if I had just advocated harder regarding the deteriorating relationship between Stow and his classmate, this might not have happened at all. Overall, I think the team Stow has at school works hard to help him. But I also think there are just some things that they can't see or don't get. None of us figured out that Stow was perseverating for a very specific reason. I didn't figure it out because I failed to ask the name of the student he was having trouble with, and the team at school didn't figure it out because they didn't know of the history between the two students. We both had important pieces of information that, if combined, would have led to a very different approach to intervention. Maybe even if we HAD intervened more effectively the same thing would have happened, but I can't help but think that it wouldn't have. 

Autism in Girls

In what might surprise no one, Falcon received an autism diagnosis a couple of weeks ago. Her diagnosis at 15 lags 9 years behind her brothers' who both got diagnosed when they were 6. Unwittingly, Ren and I became two of the many, many people who think autism in girls looks similar to autism in boys.

It doesn't.

Remember how I told you Falcon had designed about 50 characters for a novel she imagined in her head?  THAT is something autistic girls do. Autistic girls often have rich fantasy worlds. They also tend to be extremely creative.

Dragons flying around a floating castle

They tend to be voracious readers. --> Falcon read about 10 million words when she was in sixth grade. TEN MILLION! (Don't worry, I didn't count them, the reading tracking program they have to use at school did).

And a have deep love of/connection to animals. --> Our cats follow Falcon around the house like she's the Pied Piper. When she sees an animal, she connects with it deeply. If I take her to the pet store, she will fall in love with a creature there--whether it's a bird, a cat, or a chinchilla--and I have to account for the emotional distress that will follow when deciding whether or not to stop at the pet store. For a long time she told people that Frankie, my friend's Yorkshire terrier, was her best friend. She regularly lists animals among her closest friends even today.

Guess who's sitting in the chair

Shiro loves her, too

There's also:

Difficulty making and keeping friends. --> Yeah. Sigh.

Increasing difficulties with social situations as they age. --> I can't even tell you how many times she has called or texted because she is hiding (in a corner, in a closet, outside in the dark, under a table, in a guest bedroom, etc) at a party because she is totally overwhelmed.

Extreme emotional reactions to things. --> Yep.

Severe anxiety. --> Check ✔

Inability or lack of desire to understand and/or socialize with other girls. --> Uh huh.

And, oh yeah, sensory issues.--> This is the one thing I did notice! We've known about her sensitivity to sound and bright lights for years. And now I'm realizing all of her food likes and dislikes are probably sensory-related as well.

I could go on, but I suppose you get the point. There were All. Sorts. Of. Signs. And, we missed them. We. Missed. Them. Even though I KNEW autistic girls present differently than boys, even though I was looking out for it given that both of her brothers are autistic. 

Like many girls and women, she got other diagnoses, instead. First, she was diagnosed with General Anxiety Disorder, and then she was diagnosed with ADHD. Sure, these diagnoses helped us start to piece things together, but based on all the reading I've been doing since the autism diagnosis, they aren't necessarily the right diagnoses. In other words, they don't get at the underlying issue. And, I call it an issue because unnamed, autism can make things extremely difficult.

Why do we misunderstand autism in girls so much? I'm still learning, but here's my list of top four reasons based on what I've read so far:

1. First and foremost -- The diagnostic criteria has all been based on boys, and it has been assumed that autism in boys and girls manifests the same way. I doubt I need to point out that there are a lot of ways that girls and boys differ; why wouldn't the same hold true in terms of autism? Diagnostic criteria taking into account the ways that boys and girls are different has only started to be used in the last 5-10 years.

2. Society tends to think of autism as a something that usually affects boys. This is primarily because so few studies have been done about girls and autism. Getting a firm grasp on what the ratio of autism in boys vs girls proves challenging. I've seen anywhere from 2:1 to 15:1. If people don't expect to see autism in girls, they are more likely to misattribute certain behaviors to something else.

3. Girls are much better at masking their struggles. They have what this article calls a "quieter presentation" of autism than their male counterparts. They tend to have better social skills and to be better at and more interested in mimicking their peers. They also exhibit fewer restricted and repetitive behaviors than boys (link).

4. We expect different things from girls than we do boys. Despite all of my efforts to raise my boys and girl similarly, I quickly learned that from a very young age society wants different things from girls. Implicitly and explicitly girls are expected to conform in ways boys aren't until much later. I believe this means that even autistic girls learn to suppress behavior that may be considered inappropriate. Further, behavior that we often consider more "girly" can often cause indications of autism to fly under the radar. Does your daughter talk nonstop? Oh, that's because girls are more verbal. Is she completely obsessed with K-Pop?  Aren't all girls? She draws constantly and can't seem to stop when you call her? That's totally normal. She cries at the drop of a hat? Well, you know girls are super emotional. The list goes on and on.

I asked doctors over the years if we should have Falcon screened for autism. Every time, the answer was no. I could have pushed--I mean, I pushed hard to make sure the boys got screened--but I didn't. Do you want to know how we finally got the diagnosis? Falcon insisted. First, she did online screenings. I admit, when I saw results that indicated autism, I questioned whether she answered honestly. Still, she insisted, and the more she insisted, the more I began to think that maybe she was right.

Any of you who have gone through the process of getting a diagnosis know how hard it can be to get an appointment, much less a screening. It can take years. So I decided to start with the doctor who diagnosed her ADHD and anxiety. I told him by email she wanted to be evaluated. He said he didn't think she is autistic and that we didn't need to go out of our way to come in. So, I waited until her follow-up appointment for the other diagnoses (which was about 4 weeks after the first email). 

At the appointment, after we had talked about all the other stuff, I told the doctor she wanted an evaluation. He asked her why. She said, "Because it will help me to know." He asked if a diagnosis would change anything, and she told him it would. For her. Then he said to me, "Mom, what do you think? You know quite a bit about autism. Do you think she's right?" I told him I wasn't sure, but that maybe she was. So he asked us to list the reasons why we thought she might be autistic. And the more we told him, the wider his eyes got. When we were done (and we realized later we didn't even list everything), he said, "You know, Falcon, I think you're right!" and then added it to her medical record. 

It was anti-climatic; it wasn't the full work-up we did for both of the boys. But, I got Stow's diagnosis way before we managed to do the full evaluation, and getting the longer evaluation didn't change what was already there. That's how I feel about Falcon's diagnosis. Because as soon as she got it, so many things made sense in a way they hadn't before. Suddenly I couldn't understand how I didn't see it.

Over the years, I have learned there are so many different levels of mom guilt. I'm not sure what to call the level of mom guilt where you are going all out to support your autistic sons while completely overlooking your autistic daughter. I know that's an oversimplification. I know I have done many things to help her manage her allergies, her asthma, her anxiety, and her ADHD. But, I missed this, and this is a big one. We are in uncharted territory here--not only are we learning what this new diagnosis means for Falcon, but we are also learning how to manage the feelings of frustration, disappointment, and anger on Falcon's side and the massive guilt and feelings of failure on mine. 

Twelve Years Later...

Do you all remember when I started this blog back in 2011? We had recently learned that Sky was autistic, and I hoped this would be a place where I could find an understanding community. I was desperate to for information and to meet other families who were going through similar things. For so long, I blogged frequently and posts got thousands of hits. But in the last few years, my readership has dwindled as I have posted so much less. 

That's ok, though, because I've figured out some things that are way more important than post views, and those are the things that guide how and what and how much I write now. 

The three BIG ones are these:

1. My kids don't have autism, they are autistic. Autism makes their brains work differently at a fundamental level and impacts the way they experience everything. Autism is not something they have, it is part of who they are. You can have asthma. You can have allergies, but these aren't innate. You can't have autism in the same way you can't have shortness. Identity-first language matters. 

2. I am not an autism mom. There is no such thing. My kids are autistic, but that doesn't define everything about them. And, it certainly shouldn't define me especially since it is not one of MY identities. Looking back, I realize how many times I made the struggles they were going through about me. Sure this instinct may have come from a good place--I want to support them in all possible ways--but my role is supporting actress, not lead. 

3. These are not my stories, they are theirs. My goal is to amplify the voices of people who need to be heard. Sometimes, I think that will still mean that I talk about how I am processing things because I think there can be a place for that, but more often than not, I will focus on sharing their stories.

My kids know I write this blog to help me process and to share our experiences. They have read it and are and have been supportive of this endeavor. Along the way, they have also been very proud to tell their stories. I hope to keep doing that. Just know that often the silences are about the stories I can't tell, either because I don't have words for them or because they have asked me not to tell them.

The Road Trip

Hi! Remember me? Sorry I've been gone for awhile. Parenting while working during a pandemic has proven to be....well....challenging. But, I haven't wanted to be all complain-y on the blog, so I've been keeping to myself. Besides, do you REALLY want to hear about the minutiae of our daily grind? The good news is that we are all ok, and I am convinced that the past year taught us Important Lessons about life and living in the moment. 

We LIMPED across the finish line at the end of the school year, and then I taught a summer course, and then then there was some drama with Sky's classes, and then suddenly it was late June and time for us to set off on our First Ever Family Road Trip. 

When I first suggested we take a 10-day road trip to the mountains, Falcon lost it. Falcon is my non-autistic kid who handles change well and rarely overreacts, so her response surprised me. Worse, what she said made a lot of sense. She argued that since we couldn't even make it to the grocery store and back without one of the boys freaking out, there was no WAY we'd make it to Colorado and back. She also had some strong opinions about my suggestion that we camp the whole way.  I mean, she's not wrong. We are not known for our ability to be flexible and adjust. That's life with autism. 

Falcon's first reaction was so strong that I nearly gave up on the idea of the trip. But, driving across the country with my family has been a dream of mine for a really long time. Every summer, I tell the kids we are going to do it, and then I chicken out. On top of all of the other logistical challenges of planning a trip like this, we had the added stress of COVID-19 and some big unanswerable questions like: What if Ren's spine can't handle the drive? What if Stow elopes or becomes inconsolable after so many days away from home? These were all real possibilities and would be horrible if they happened when we were 12 hours from home. Still, after sitting on the idea for a month, I decided that we were going to take the trip anyway. Sometimes you just have to face your fears. 

Falcon was still resistant and she didn't entirely come around until I agreed to stay in hotels instead of planning to camp the whole trip. It was an expensive compromise but also one I am sure saved us much heartache. Instead, of campsites, then, I booked quirky "Mom and Pop" motels, and we had three fabulous nights in Grand Lake, CO, staying in a cabin near a lodge where I worked for the summer when I was 20. 

Random trip photos: Needles Highway (South Dakota)

For a first attempt, the trip went surprisingly well. Plus, I learned a few things along the way that I can share with you. So, here I present "Moe's Random List of Things She Learned While Driving Across the Country in a Car Full of People":

1. First--and I don't think I can stress this enough--when you have five more hours of driving to go, don't buy burritos with beans in them for lunch. Seriously. Somehow I did this not once, but TWICE! Given our various food allergies, fast food options are limited, which is how we ended up eating at Qdoba. I'm hoping I've learned my lesson, especially after the second time when it was raining so we couldn't open the windows.  

2. Build flexibility into your plan. Some of us wanted to do things and some of us didn't. Being able to be flexible was vital. The cabin we rented for the three nights we were in Colorado was close enough to town that we could walk, so if a kid didn't want to go, we could take turns being out and about. Similarly, when we were driving through the Black Hills in South Dakota or Rocky Mountain National Park in Colorado, we didn't force every kid to get out and look at the scenery every time. By being flexible in our own thinking about what we wanted to achieve on any given day, we ended up helping the kids manage their frustration tolerance in ways we haven't seen them do on other trips.

Custer State Park (South Dakota)

3. Be specific about the plan and the possible ways it could change. I know this sounds funny given what I just wrote in #2, but for our autistic kids, knowing what to expect and how things might change goes a LONG way in helping them manage the stress of new situations. On the flip side, not being careful about this can lead to trouble. 

The two biggest meltdowns Stow had on the trip both happened when I wasn't precise with my language. For the first one, I described the Corn Palace in Mitchell, SD as "being made from corn" when really I should have said, "The MURALS ON THE WALLS are made of corn." Since Stow is a kid who deals with change by becoming more rigid, it can be difficult to get him out of the car. He's also very literal, so if you tell him "everything is made of corn," everything better be made of corn! He spent the entire 30 minutes we were at the Corn Palace pointing out all of the things that are NOT made of corn: "Look, Mom, the steps aren't made of corn. The door isn't made of corn. Those tables aren't made of corn. The walls aren't made of corn. NOTHING here is made of corn....." The second time was at Devil's Tower where I made the mistake of saying we would go on a "short hike." My idea of a short hike (1.2 miles around the base of Devil's Tower) was different from Stow's idea of a short hike (from the car to the bathroom and back), so he spent the entirety of our time there becoming increasingly upset that we weren't turning back. Eventually, he stopped walking altogether, and the five of us stood immobile off to the side of the trail for a solid 15-20 minutes while I tried to persuade a very agitated Stow to keep going. By the time we got him settled down enough to start walking again, Sky was triggered, so I spent another 20 minutes sitting on a bench with him as he alternated between crying and being angry with me for not being more careful with my words. So, yeah, be specific.

Rocky Mountain National Park

4. Use boxes. We had three boxes: a cooler, a collapsible box of snacks, and a huge tote for our clothes bags. On top of that, each kid was allowed one backpack or box for the car. Getting in and out of hotel rooms/our cabin was a breeze. Two kids carried the big box, one carried the cooler, and Ren or I grabbed the snacks. In the hotel rooms, our huge tote fit nicely on the luggage rack while the cooler fit under it. This made the nights where five of us shared the same room much more bearable. Further, since we put our bags into the big box every time we left a hotel, it was easy to spot whether or not something was missing. 

5. Finally, if you are married to Ren, pray that a rock won't hit your windshield leaving a starburst-shaped crack on the very first day of the trip. Because, even though you know this kind of thing happens all the time (and you even think the starburst is kind of lovely), Ren will simply not get over it, which shouldn't surprise you given how hard he takes it whenever you have to drive down a gravel road in a newly-washed (or even slightly dirty) vehicle. Bless his heart, though, the man drove nearly 3000 miles with an unforgiving spine, and his ONLY complaint during the trip was that stupid crack in the windshield!

Elk in Rocky Mountain National Park

Stow's Phone Call

Small changes can result in major dysregulation, so I've come to refer to Daylight Savings Time as Devil's Stolen Time. We knew that this week would stink, but we have to keep parenting anyway. Parenting during DST should come with a warning label: Enter at Your Own Risk.

On Tuesday, like most days, Stow didn’t want to stop watching YouTube to do his schoolwork. I’m pretty sure this happens in every household. What is less likely to happen in other households, though, is that when we insisted he stop (after setting a timer and giving him plenty of warning), his fight instinct kicked in. We haven't seen a lot of meltdowns lately, but Devil's Time has a way of screwing things up, killing our vibe, messing with our rhythm. Since I’ve written about Stow's meltdowns in the past, I won’t go into details now other than to say that even after we took his Chromebook, he was still highly dysregulated. And, that's when he decided to “call the police.”

I tried to grab the nearest handset and dial another number before he could punch in his, but I didn't make it in time. And, even though I explained to the dispatcher what happened and that all was fine, 15-20 minutes later an officer showed up. By then, the meltdown had fizzled out--after he spent some time swinging a tennis racket at snowballs (and my car) while wearing flip flops in the snow--and Stow was quietly playing with his LEGO. When the doorbell rang, he ran to get me, color drained from his face, "The police are here!"

Later Stow asked me what would have happened if I just didn't answer the door, and, to be honest, that was my first instinct. But, I believe in facing my consequences, and this time I felt like I deserved this visit because I hadn't managed to outthink my kid and his meltdown. The officer introduced himself, asked if we were ok, asked if he could come in. He wanted my full name and Stow's full name as well as our birthdays. He talked to Stow for a bit and seemed to study me and my reactions. Stow cowered behind me and was barely audible when I made him answer the officer's questions; after all, he called 911, not me. Finally, satisfied, the officer left. 

I did not want to invite him in or give him our information, not because I think law enforcement officers are bad nor because I somehow thought this guy wasn't just doing his job. I know that if someone calls 911, the protocol is to follow through and make sure no one is being held against their will. People I care for deeply are or were law enforcement officers. So, of course, I believe that police officers should be respected and that their jobs are important. Of course, I would like to believe that all law enforcement officers are good people who do their jobs well.

But, I have also read many, MANY stories about autistic or mentally ill people being arrested or injured when police have intervened, and I have in the forefront of my mind the story of one of our Asian American students who lost her brother this past Christmas when they requested police assistance in handling his mental health crisis and the officer put his knee to her brother’s neck. While our local police officer was visiting us, 6 Asian women were being murdered in Atlanta. And, as I worked to put into writing my feelings about this, a sheriff deputy described the white shooter of those Asian women as having "a bad day." So many stories about the unevenness of how people of color or neurodiverse people are treated compared to their white, neurotypical peers illustrate that we are so very far from where we should be. 

I wish that the incident with Stow could have been just a lesson about why he shouldn't use 911 in a non-emergency, but instead, it was a lesson for me about my own hidden trauma. What would have happened if Stow called the police when I wasn't home and Ren couldn't clearly explain the situation? What would have happened if the police officer showed up in the middle of an aggressive meltdown? Stow's phone call could have gone very, very differently, and I doubt I will ever forget the fear it caused me. I long for a time when we have centered neurodiversity and non-whiteness enough that if our freaked-out kid calls 911, our worry doesn’t have to be about his safety or whether he will be taken away but instead can be about how to best help him navigate this world.

*****

After the visitor left, Stow insisted we play Jenga, a game we haven't played in years. You guys know I'm a sucker for a metaphor.

Postscript 1: Every day since the phone call, Stow asks me another question about it. He doesn't want me to bring it up, and he doesn't want me to say anything more than the exact number of words necessary to answer his question. He has grasped that he should never call 911 in a non-emergency again, and he is also very sorry about his choice. Autism sucks because good choices are hard to come by in the middle of a meltdown caused by dysregulation.

Postscript 2: We have asked the school to block YouTube on his computer. I know that makes us the worst parents in the universe, but I'm willing to accept that distinction.

Postscript 3: Up until very recently, my most-read blog post (by far) was the one titled: “My Secret Life as a Japanese Housewife,” and analytics made it pretty clear why I was getting those hits. (As an example: I had to turn off ads because they were clearly pitched to people who weren’t my intended audience—eww.) Recently, my post about Hand Foot and Mouth Disease has outpaced the Japanese Housewife one. It’s harder for me to explain why that one is so popular. (You can see the list of my most-read posts in the column to the right on the desktop version of the blog). 

They Work So Hard

One thing I think is really difficult for neurotypical people to appreciate is just how hard people with autism work to get through each day.** It takes a lot of energy, concentration, and processing to work through the various input that comes at us. Whereas neurotypical people filter through those things without even noticing, autistic people often find themselves having to consciously and intentionally sort through a tangled mass of sensory, social, and academic information. They know that the more they can organize and control that input, the easier it is to make it through the day, but managing it all is tough.

I came to really appreciate this when Sky started school. At first, he could "behave" in the morning, but he would get in trouble all afternoon. Then, he could do what was expected of him until about 1 pm, but he would fall apart between then and the time the bell rang at 2:30. At one point, he could make it until about five minutes before the bell, but he could never quite get to the end of the day without having some kind of problem with his teacher or the other kids. "I don't understand it," the teacher would say. "He always does so well for most of the day!" It was hard for her to see that it really was just a matter of stamina for him. He knew what he had to do to compensate for all of the challenges his autism presented,*** but he had a limited number of resources.

When you watch your kid go through years of occupational and speech therapy, and when you watch them literally practice how to behave in the classroom and how to interact with peers on the playground, you start to understand why school makes them so tired. When I send Sky and Stow off in the morning, I do so knowing the immense hurdles they will face during their day, and when I greet them after school, I do so with a combined sense of relief that they made it through unscathed and awe at their bravery. It's weird. I know. 

Many nights during Sky's first several years in school, he would fall asleep on the couch or while eating dinner because he was so tired from this work. While other kids were joining sports teams and going to practices in the evening, Sky was struggling to keep it together until bedtime. Often, he didn't make it, and once he fell asleep, NOTHING we did would wake him up. He was exhausted, and he needed to used every second of the twelve hours of sleep he got between dinner one night and his morning alarm the next day to store up the energy reserves necessary for him to get through another day.

A few weeks ago, I wrote about how much Sky has struggled during the pandemic. All of the coping strategies he has worked to develop over the last ten years have been laid bare by COVID-19 life. Even as those strategies have been crumbling, however, Sky has kept working. He has kept trying. He hasn't given up (even though he has every right to want to). Suddenly, though, it feels like we have traveled backwards in time. Because, suddenly Sky can't make it through dinner again. Every evening between 6 and 6:30, he hits a wall and finds himself completely out of energy--totally spent. We've tried different strategies to help him stay awake so he can get things done, but he invariably ends up asleep on the couch or the floor somewhere.

It seems like every time I walk into a room, I encounter a Sky-shaped crime scene. Now that he's 5'10," though, when he falls asleep just anywhere, he tends to be in the way. And, these days, we can't easily pick him up and carry him to his room.

This pandemic has been so hard for so many of us, but I want to give a special shout-out to all the kids and adults like Sky who have hung in there and done the best they can even when their worlds became completely unmoored. I see how hard you are working! You are amazing, and I am so very proud of you!

** Disclaimer: While I am talking about neurotypical people and people with autism, I want to note that I am doing it based on my experience as a neurotypical mom to two autistic boys. I understand that our story doesn't represent every story, but I also think our experiences can be instructive. In fact, the boys ask me to share these stories because they want people to understand what it's like to live with autism.

***Disclaimer #2: I am not suggesting that autism is somehow bad or that people with autism are bad. What I am suggesting is that in a neurotypical-centric world, the kinds of behaviors that were natural to him were often met with displeasure fro his teachers and peers.

Homework

According to my Fitbit, over the last few weeks I've gone from sleeping an average of 7 1/2 hours a night to sleeping about 6. A couple of nights, I got just over four hours of sleep. When I was in college, 4 hours was no big deal. When I had newborn babies, sleeping that little was par for the course. But now that I am pushing 50, 4 or 5 hours a night is excruciating.

I stopped sleeping because Sky stopped sleeping, and Sky stopped sleeping because the pandemic finally got to him. For months he has been saying that he can't understand why so much of life is going on as usual despite the fact there is a pandemic. What he means is that while his life hasn't been normal at all, his school work hasn't changed. Many of his outlets--hanging out with friends, going places as a family, playing tennis--have been cut off or greatly curtailed. Every time he goes to school, the kids are spaced so far apart that there is little opportunity for him to interact with the other people in his class or in the hallways. For the purposes of keeping the kids safe, this strategy has worked remarkably well. In a school of about 2000 students, they have had less than 100 cases of COVID, and none of those have been tied to in-school transmission. But, the teachers can't teach how they would normally teach, and the students can't interact in class the ways they would normally interact. 

So, after a long, weird day of school, he comes home with a ton of homework. Then the next day, when he is home for the day doing remote learning (so the other half of the students can be in the building), he usually gets MORE homework. And, for awhile, he managed to handle it. Two months in, though, he took a day off from doing his homework because it was his birthday. The break made him realize just how bad school was making him feel.  

Suddenly, he knew that he couldn't sustain the same level of discomfort on a regular basis, so it got harder and harder for him to get work done. During the next two months, we dealt with more and more perseveration about school and the pandemic. It was exhausting, but it turns out it wasn't nearly as exhausting as what came next, because finally one day, he came home from school and told us he just couldn't do it anymore.

As a parent and a hopeless overachiever, I had no idea what that meant or how to respond. I tried to be encouraging. I offered to sit with him in order to help stop his thinking spirals every time they started. I was hoping that eventually he would get back on track and be able to stop the perseverating thoughts himself. For several days, we spent hours and hours together in his room trying to get through even the easiest of assignments. But, it didn't get better. The perseveration got worse, and he started missing assignments. A couple of nights ago, he perseverated for over an hour about the amount of work he was being asked to do. The thought of even starting the work sent him into a tail spin, but so did the thought of not doing anything. Eventually, the spinning wore him out, and he fell asleep.

Even the fun stuff (ie robotics) isn't much fun anymore!

We are working with all the specialists and trying to get him through this. But, you know, I don't think he's wrong here. This IS a pandemic. We need to be treating it like one. We need to acknowledge that it is impacting many of our kids in ways we can't possibly understand right now.

The difference between parenting a neurotypical kid who is struggling and an autistic kid who is struggling is that you pretty much completely have to immerse yourself into the autistic kids’ world and way of thinking in order to get a handle on what’s happening. With Falcon, the problems and solutions are a lot easier to identify and work through. With Sky or Stow, it can feel like a total slog; it’s like being pulled into a quagmire and not really being sure you can find your way out. That said, Stow and Sky are barometers for the complexities and challenges of human experience in a way that never fails to surprise me. And, they are almost always right about what is wrong.

So, it strikes me that I need to start listening better. I've stopped trying to help Sky stay awake to work on his homework and have instead started encouraging him to do what feels right for him right now. On Monday, I will meet with his teachers, and I will talk to them about universal design and ways to assess learning that maybe aren't homework and test based. Most importantly, though, I am going to remind Sky every day that his grades don't matter nearly as much as his well-being. 

PS:

If you haven't seen this amazing video by a high schooler who was asked to express what the pandemic feels like, please take a look (LINK).

Waiting for Shiro

While I haven't talked about this as much on my blog as I used to, we continue to live with autism (surprise!). Some days that means amazing things, and some days, frankly, are very difficult. (Insert long parenthetical about how admitting some days are difficult does NOT mean I don't love my kids. As far as I am concerned, they hang the moon and NOTHING can compare to their awesomeness. That said, with autism comes a host of real challenges like anxiety, struggles in school, aggressive meltdowns, the inability to manage social situations, depression, and a whole bunch of other things. THOSE are the things that make living with autism difficult.) Struggles with language and social skills means that kids with autism constantly work very hard just to get through the day. I am not autistic, so I don't know what it is like, but I imagine it must be like living in a world with rules that don't make any sense and with people doing unexpected things and making demands that seem completely arbitrary. I also think it must be completely overwhelming for the senses. I don't know about you, but I'm pretty sure I couldn't handle that nearly as well as my kids do.

When Sky was younger, the interventions we did with OT and speech therapy seemed to help. With Stow, similar interventions have not yielded the same result. The two boys are clearly wired very differently. So, we have tried a host of different things with Stow with limited success. If you are a special needs parent, you often find yourself seeking to solve problems even when you don't know all of the variables. That has been especially true with our experience with Stow, and we are always looking for clues. 

Often the clues come from the most unlikely places. Our most recent clue came in the form of new neighbors and the sweetest dog on the planet (the neighbors are pretty great, too). The dog is a miniature bernedoodle called Winnie. She's still a pup but very well-behaved and a huge fan of our kids. The feeling seems to be mutual since every time Stow sees Winnie outside, he insists that we go say "hello" (sorry, new neighbors!). For the first month they lived here, Stow watched for Winnie like a hawk. Given that I'm a bit shy, it was awkward to constantly appear whenever the new family was outside (seriously, I'm so sorry!). One day, after a particularly hard morning, we got outside to wait for Stow's bus just as Winnie came out to do whatever it is that Winnie does in the morning. Stow, who until that point had been saying that he would absolutely NOT be going to school, locked eyes with Winnie, and his demeanor immediately changed. Clearly, Winnie was connecting with Stow in a way that people often don't.

Later that day, I posted this picture of the two of them looking at each other. A friend who has a son with autism suggested we look into getting a service dog for Stow. I responded that I HAD looked into it, and my understanding of the situation was that either Stow wouldn't be a high priority for a dog or that we couldn't afford the cost of one (they cost between $35,000 and $50,000). But, then another friend replied telling me to reach out to her directly, and soon one thing led to another, and we found ourselves on the road to getting a service dog.

One of these pups will be Stow's service dog.

We're working with an organization called Dawgs2Heal that trains and places autism service dogs. We've been selected to receive one of their 2021 trainees and are in the process of raising $10,000 to help pay for the training. 

A few weeks later, and they are all fluffier!

We learned that we will have the chance to name Stow's service dog, and miraculously everyone agreed on a name. We will call her Shiro, which a fairly common dog name in Japan. We chose it because Shiro is Momotaro’s faithful companion (in the well-known folktale), helping him on his long journey to defeat the ogres. We hope and believe that Stow's new service dog will be an equally brave, faithful, and helpful companion. Also, we already have two cats, Momo and Taro, so how could we not have a Shiro?

Momo (R) and Taro (L) have NO idea what is about to happen to them. I felt guilty, so I got them their own castle. Lol.

Lastly, I wanted to share this note that Stow left for Santa. I've included a picture, but since he struggles some with spelling, I will type it out here: "Dear Santa, I know I was bad, but I will love you if you forgive me, and please leave a note. I hope you finish your travel. PS: Love you. You are amazing. I hope you give me good luck for the dog."

This letter is so heartbreaking and heartwarming at the same time. Kids with autism and ADHD struggle constantly with a fear of being in trouble for "bad" behavior. One of the most moving things about peoples' positive response to our service dog fundraiser is that it has shown Stow that there are a lot of people out there who don't think he's bad at all. I would love to give him the gift of knowing we are getting Shiro for Christmas. 

What Stow Wants You to Know about ASD

Seven years ago, I asked Sky to guest post on my blog so he could tell you what it is like to live with autism. He was nine years old. Stow is 9 years old now, and the post we shared then (link: What Sky Wants You to Know about ASD) could have been written by Stow now. The main difference between Sky and Stow is their preferred medium. Sky expressed himself most in art, but Stow is a video guy. He often walks around the house narrating his life and making videos for his imaginary YouTube audience. Where Sky wanted to become an artist at age 9, Stow wants to become a YouTube star. 

To be honest, I didn't notice the similarities until I came across the old guest post by Sky. But, looking at that post and comparing it to the video Stow made to show his class, it's a bit uncanny. The takeaway? Being autistic is hard and trying to "pass" as neurotypical at school takes A LOT of energy.  

Stow hopes you enjoy the video and that it teaches you something you didn't know about autism. As for me, I hate being filmed, but I'd do just about anything to help my kids feel like they have control over the stories they tell about themselves and their lives. 

Please Be Nice to My Kid

The kids go back to school this week and next.* I know that all of us have struggled with the long and life-changing impact of COVID-19, but I suspect it has been especially hard on kids with special needs, who have been more isolated and more cut off from necessary supports than "typical" kids.** When Stow goes back to school next Tuesday, six months will have passed since the last time he set foot in a classroom. In that time, he has not had many chances to chat with classmates or participate in extracurricular activities. He has, in fact, gone through the longest period of isolation of his life. As a result, he has lost ground in terms of his social skills and developed deeper anxieties about his peers and the ways they might reject him.

Third grade was hard for Stow. After a brilliant first six weeks, something happened on his bus, and his behavior spiraled downward in a way that was hard for all of us to get a handle on. By December he had been moved to a self-contained classroom for part of the day, by late February we added one-on-one aide support, and on March 13th he left school for the weekend never to return (thanks to COVID-19). We don't know how the rest of third grade would have gone with the help of the aides, but with the shift to remote learning, we found ourselves cast adrift as we struggled to get him to engage with his teachers and classmates. It's hard to imagine how fourth grade will go, but I expect a wild ride on re-entry and plenty of bumps along the way.

Other kids have always been hard for Stow to figure out, but the gap between him and his classmates grows each year. As kids get older and more aware of their peers and what it means to be cool and fit in, kids like Stow find it harder to "pass" as neurotypical. Stow's day to day life at school isn't like everyone else's. He gets pulled out of class throughout the day so his special ed team can work to help him handle the stress and social overload of school. When he doesn't understand a peer interaction, he can overreact, and his fight or flight instinct kicks in. He misreads verbal AND nonverbal cues. He gets too close to people and talks to them about things that don't make a lot of sense because he doesn't always realize that they can't see inside his head. When he's gets really upset, he cusses like a sailor in order to make sure people around him understand just how mad he is.

This is how he'd like to go to school on the first day. 

None of these things endear him to his peers.

Sending him back to school next week feels a bit like throwing him to the wolves.*** But we also know that this is what we need to do. Stow struggled to learn anything academically with remote learning because online class meetings were too much for him. And, despite our best efforts, school at home didn't provide the degree of structure that he so desperately craves. Most importantly, though, he still needs lots of practice with peer interactions and self regulation, and this is something we simply can't duplicate at home. He needs to be in school with his peers, trying, failing, and learning from his mistakes.

In other words, our only real choice is to throw him to the wolves and hope that the wolves turn out to be very, very kind.

So, please, be nice to my kid and encourage your kids to be nice to him, too. I know it's a lot to ask at times, but please support the quirky ones, the loud ones, the ones who misbehave. Be patient with the kid who interrupts repeatedly, who asks you a thousand questions about your power tools, or who tells you too much about his favorite Lego guy even though he's too old to behave like that, and you're really busy doing something else. When a kid panics or yells or swears or makes a terribly-timed or inappropriate joke that makes no sense, please consider that maybe he's not really trying to be a jerk, that maybe he just really needs help or wants to be your friend.

It's hard to send a child out into the world when you know how much they will struggle, and I'm not above begging when I say this: please, please, please be nice to my kid and to all the other kids like him. Because goodness knows they are working hard than most of us will ever know to do the best they can in a world that isn't really made for them.

"I'm nice."

Edited to add this picture which he insisted on putting up to the camera during his class's Zoom meet and greet. I don't know whether to laugh or cry. I'll probably do both.

* Sorry. This blog post isn't about how we came to the decision to send them back to in-person school. I don't have the energy to write that post right now, but suffice it to say that we feel confident they will be safe or we wouldn't be doing it.

** I'm not going to debate this. Again, too tired.

***Don't get me wrong. He has amazing supports in place and a strong "IEP team;" it's just, you know, hard.

Karate Mama

A lot of unexpected things have happened over the past few months. Perhaps the most unexpected of all is that I am now taking karate classes. Well, kind of.

You probably remember that Stow started doing karate just under two years ago (and that he had a totally awesome Nerf Karate Panda party for his eighth birthday). Well, he has continued to do karate, and since so much of Stow's life and routine has been turned upside down by the pandemic, we really wanted to make sure that he could still do it even during the shut down. Fortunately, he had the chance to keep up with lessons by following videos and practicing at home. And, once it was deemed safe for classes to start in person (with safety and social distancing protocols in place), we decided to slowly reintegrate him; we figured that his anxieties about the coronavirus and about socializing and about change would be enough to cause his head to explode if we just threw him back in to classes (that now looked very different due to COVID-related changes). So, the head of the karate school, Mr. N, kindly agreed to give Stow private lessons until he was ready to rejoin the group classes.

Stow practicing at home during the shut down.

Mr. N is a few years older than Ren with a white goatee and shaggy hair. He drives a beat-up van and plays in a rock band on the weekends. And, he's adamant about how things should go at his karate school. He asks parents (who he refers to as "rides") not to coach kids during or after class. His teaching methods require kids to be visually, auditorily, and physically engaged. And, he uses catch phrases about respect, hard work, memory, etc that they can apply to other aspects of their lives. 

Taro being entirely unhelpful.

And, by and large, what he does works. Though Stow has turned out to be a challenging case.

Initially, we thought he would do a couple of one-on-one lessons and then rejoin the classes, but as time has passed, the factors that cause Stow to struggle with karate have become clear. It has also become clear that he isn't entirely ready to rejoin his peers. Stow goes from having a terrific class on a Monday to having a disastrous one on a Wednesday. Ren and I could literally do the exact same thing to prepare Stow on both days and get vastly different results. One day, he could do all of the forms and call out the steps in order, and the next he might wander around the mat, crawl on the ground, or run out of the building. Since listening to instructors and showing respect are important parts of karate, the days when Stow doesn't behave are hard on everyone.

It takes about three months of consistent practice and doing well in class to advance from one "color" belt to the next, and there's always a point along the way where we really don't know if Stow will make it. While Stow will agree that he likes karate when he's doing it, and while he has progressed well with the forms, karate is hard for him because leaving the house is hard for him. In fact, if he had his way, he'd probably never leave the house at all. The house is a controlled and safe environment where he can get deep into a world he's created and where he doesn't have to deal with all of the chaos of other people's unpredictability. He doesn't have to figure out what to do with the fear, frustration, and confusion dealing with others causes him. Stow is very much a fight or flight responder when he's overwhelmed, and pretty much anything can overwhelm him.

Stow at a one-on-one practice.

That means, in the process of working toward any given belt, Stow will decide that he wants to quit karate--not because he doesn't like it but because because he is sure that the teachers and the other kids don't understand him and that he will get in trouble. In the one-on-one lessons, when Mr. N corrects him or tells him to try to do something better, sometimes Stow takes it well, and other times, it sends him spiralling out of control. One lesson, Stow flat-out refused to do anything from the start and only agreed to practice for the last ten minutes, when he realized that we weren't leaving until the lesson time had ended. Another, he got so upset that he stomped out to the parking lot and then back in again to yell at Mr. N. Given how tightly Mr. N runs his school, I was sure he would chuck us out for good after that particular class.

Though he has never admitted it, I am SURE all of this is frustrating for Mr. N. Fortunately, Mr. N has been teaching karate for a long time, and once he realized that we were committed to doing right by Stow while also not coddling him, he has worked hard to understand how to reach him. And since I know Mr. N is on board with trying to figure out how to help Stow succeed at karate, it's a little easier for me to feel ok pushing Stow out of his comfort zone.

That's how I found myself taking karate classes. To avoid a repeat of back-to-back classes where Stow refused to participate, Ren and I made a social story, talked about expectations, and provided opportunities for reward. When none of that worked, I unexpectedly announced, "Well, if you're not going to have a lesson, fine. At least I can."

Not knowing how Mr. N would feel about this sudden change of plans, I followed up with, "I mean, if it's ok with Mr. N."

"Sure," he said. "Cool."

And, that was the beginning of my career as an out-of-shape, inflexible karate mama.

Once Stow realized I was serious, he joined me on the floor. We did the warm up and the practice punches I'd watched him do a million times before. Then we moved into various stance drills and hand combinations. Two things surprised me. First, karate is really good exercise. And, second, it's a lot harder than it looks, especially for people with coordination challenges (LOL). I left my first karate practice with a whole new appreciation for what Stow has accomplished.

Some of Stow's belts (he has two more and will soon have another).

Since then, Stow has asked if I could join his class every time, and every time, Mr. N has graciously obliged. Not only that, he has spent time trying to teach my awkward self how to get better at karate. Stow still resists practicing or going to class when it will take him away from whatever world he's absorbed himself in, but on the whole, he has been a little more willing to be pulled away from those worlds now that he can teach me some karate.

I doubt I will ever get my own karate belt, but I am super proud that Stow has been able to do what it takes to achieve his next belt (RED!!) in a couple of weeks. I am also beyond grateful to Mr. N. It's hard to find a coach willing to teach Stow, and his willingness to keep trying means the world to us, even if Stow doesn't entirely understand how lucky he is.

I See You (Almost Ten Years Out)

This week marks the beginning of our tenth year since Sky’s autism diagnosis, which means it has been about eight years since I created Mom in Two Cultures. I don’t know how much this blog has helped others, or even if it has helped anyone at all, but here's what I want you to know, my fellow special needs parents:

I see you.

I see you planning and strategizing before every outing with your son or daughter. I see the time you put into trying to figure which combination of events are least likely to trigger a meltdown, planning your schedule down to the last minute, making sure your bag has the right mixture of fidgets, sensory distractions, and allergy-safe food. I see you when people judge you for handing your phone or a piece of candy to your son as a last-ditch effort to keep him from careening over the edge into a full-blown meltdown. And, I see you when all of your strategizing and negotiating fails and he tumbles over that edge anyway, tearing your shirt, hitting you in the face, running out into the street. 

I see you stumbling into work, bleary eyed and overwhelmed after wrangling your child onto the bus, following a morning that included screaming and refusal after refusal—refusal to get out of bed, refusal to put on clothes, refusal to eat breakfast. I see you as you try but fail to keep your voice even and your reactions measured because you know that losing your cool will trigger your daughter’s anxiety and make everything harder. I see you teetering at your own breaking point as you fight to keep your exhaustion and frustration masked just long enough to get him to school and yourself to work.

I see you up late night after night carefully composing emails to send to his teacher, his principal, his therapist, his doctor, his IEP team, as you struggle to figure out what has triggered the latest regression and how you can prevent the inevitable downward spiral that will happen as a result. I see you sending notes to teachers thanking them for their work and sharing with them the latest insight you gained from wherever it was that you gained it. And, I see you meeting the bus every day with an encouraging smile as you try to will your daughter through this tough spot and help her get back on track.

I see you on the phone with people who have never met your son but who think they know what he needs more than you do. I see you set your jaw as the person on the other end of the line tells you your daughter’s need isn’t great enough to merit services. Or that her need is too great to benefit from the services they offer. I see you wracking your brain to make sense of these two completely contradictory responses that sometimes happen within hours or days of one another. And, I see you on the phone fighting with the insurance company to cover what they’re supposed to cover or with various billing offices as you explain one more time the delays in payment. I see your eyes widen incredulously when the provider tells you they can’t accept your son after your yearlong wait on the waitlist simply because they don’t take your secondary insurance (even though they take your primary insurance). 

I see you constantly choosing which battles to fight and which battles to forfeit because you don’t have enough time or energy to fight them all. 

Stow coloring

I see you as you cry for your child who has been left behind by his peers, who plays at home alone instead of with classmates, who can’t handle the excitement of a birthday party or the uncertainty of a night away from home. I see your fear as you wonder how the other children will respond to your daughter’s overtures and burgeoning attempts to make friends. I see you as you try to comfort your daughter while you also try to explain which of her actions was inappropriate or annoying to the kids on the playground so that maybe she will have a better chance of getting along with others next time. 

I see how incredibly isolating it can all be.

I see you when you meet eyes with your spouse across the table while your child falls apart over dinner. I see how you look at each other knowingly but also desperately because neither of you knows how to make this better. I see you trying to protect one another from the confusion and the pain that is a real part of your day-to-day life. And, I see how guilty you feel for feeling that way about this child you both love so deeply, so fully.

I see you as you examine the bruises and scratches on your arms, your swollen lip, your disheveled hair and as you wonder how there isn't more evidence of the emotional and physical battering that this kind of parenting brings.

I see you comforting your neurotypical children as they cry about broken toys, broken plans, broken hearts. I see you as your struggle for words to help your neurotypical child to remain happy and hopeful despite the ways that life can be difficult and unfair. And, I see you worrying about whether your other kids are getting the attention they need and deserve.

I see you as you lie awake at night wondering how you will keep your child safe. I see you as you try not to think about the statistics, about elopement, about accidental drowning, about seizures, and about all the other terrifying things that are part of your life. I see you as you sit dumbfounded wondering how your child has slipped away again and paralyzed with the fear that comes with knowing that maybe this time you might not find him in time.

I see you fighting to make the best decisions for your child, knowing that you don’t have all of the information, that you might never have all of the information, but that somehow you have to make enough sense of what you know to get her the support and treatment that she needs to live her best life. 

I see you. I know it's hard. I know you are doing the best you can.

I'm sorry I can’t be there to fight with you, to worry with you, to cry with you, to drink and watch mindless TV with you, but I want you to know that I see how hard you are fighting to make it through every single day. I'm proud of you! You are amazing. Stay strong. You are not alone. I’m right here fighting with you.

Ten Words

"Stow, I got it. Just sit down and shut up."

On the bus ride home from school on the first day of October, Stow heard these ten words from the bus aide. The exchange was observed by another aide, reported to the principal, and responded to immediately. And, in the scheme of things, in a world where so very many bad things can happen to a kid, being told to shut up can seem insignificant. Somehow, though, this became the precipitating event to what has turned out to be another challenging fall.

I was there to meet him when he got off the bus that day because Ren was still very much in the throes of his post-op recovery and couldn't handle Stow on his own. When Stow got off that day, he explained that something bad had happened to a kid and that somebody was going to get into trouble and that it was ok because another grown up had dealt with it. It took three or four tries for me to get enough of the story from Stow to understand that the something had happened to HIM. Once I felt like I had a handle on the story--he was trying to help the bus aide on his special needs bus by telling her what to do and she told him to bug off--I sent an email to his IEP team. It was probably one of the shortest messages I've ever sent an IEP team.

Stow got off the bus upset because he says the bus aide told him to "shut up" and that he was annoying. Obviously, this is highly problematic, and we’d like to get to the bottom of what’s happened and the situation on the bus.  

Thanks,
Moe

Almost immediately, I got a call from the principal. He'd heard about the incident from the aide and called me as soon as his afternoon bus duty ended; he hadn't even had time to see my email. Our conversation was short. He assured me that they would act quickly to address the situation. Stow asked to talk to him, and when he did, the principal told Stow how sorry he was that someone had treated him like that and promised that everything would be ok.

I hoped and believed that it would, but fall has always been hard for the boys, and everyone who works with Stow knows how fragile his successes can be and how quickly he can spiral.

Day 1

The next morning, the aide was still on the bus. Sometimes things don't happen as quickly as we'd like. It took the bus company some time to find and review the video of the incident and then a little longer for them to find a replacement aide for Stow's bus. It broke my heart to see him get on the bus that next morning and to see the offending aide not even greet him. 

I tried asking him if it worried him to have the aide on his bus, and more than once, he said it didn't. I am sure that it's true that he didn't think it bothered him. But, what is also true, is that starting on October 2nd and for weeks now since, he has struggled behaviorally at school. Before the bus incident, he had day after day of truly positive behavior charts. In fact, not long before the incident, we'd met with his IEP to discuss scaling back some of his supports because he was doing so well. 

Stow rides the "short bus" because he finds it hard to manage the social aspects of the "long bus." On the long bus, kids get into conflicts and the driver yells. A kid like Stow can make terrible choices in that kind of setting, and the drivers aren't usually equipped to support a kid who struggles. Ironically, the very thing we were trying to avoid by having him ride the special needs bus not only happened but also triggered every anxiety he has about getting into trouble for trying to help. He can't articulate any of this; in fact, things like this remind us of how much of what he experiences/feels sits just outside of his ability to comprehend.

It seems unfathomable that something as little as this moment of impatience and a failure to self-censor could derail a kid so, but Stow's teacher and I both keep track of his behavior (because behavior MEANS things; it ALWAYS means things), and it has steadily worsened starting with the bus incident. At this point, we find ourselves in unchartered territory given the struggles he is having at school, and though his team knows Stow well, they can't figure out how to get him back on track.

This is autism, you guys. You figure out what works, and for awhile it works. Sometimes it works so well that you feel like you've unlocked finally cleared a level in the video game called Life With Autism. And, then suddenly, the littlest thing can send you right back to the beginning. For those of you out there dealing with these kinds of challenges or worse, hang in there! We’re with you!!

A Thousand Tiny Cuts

I wish I could say that Ren and I have come to terms with the spine news, but we haven't. I wish I could say that my powers of positive thinking and spiritual beliefs have helped me know it will be okay, but that's not true, either. Instead, in the down time I've had between the fifth-grade camping trip, Stow's "Nerf Karate Panda" birthday party, and various graduation activities this weekend, I've been mentally composing a list of the thousand tiny cuts that threaten to do us in. 

So, I made a table. I know it's lame and that you probably don't even care, but I feel like someone needs to keep a record, a record that will either tell of our amazing ability to persevere and overcome or one that so clearly maps the detours and road blocks along the path to our demise.

September 2009	Moe starts as teaching fellow at small liberal arts college.
December 2010	Sky formally diagnosed with autism after extensive testing; Pink is diagnosed with a severe peanut allergy.
March 2011	Pink is diagnosed with other food allergies.
May 2011	Stow is born.
May 2011	Pink is hospitalized and receives asthma diagnosis.
September 2011	Ren’s back goes south on Sky’s first (and Ren's last) ever Cub Scout camping trip.
March 2012	Ren has his first spine surgery (a lamnioplasty) in the lumbar spine.
March 2012	Moe accepts position as a Visiting Assistant Professor at the same college.
May 2012	Moe successfully defends her dissertation.
May 2012	Stow turns 1.
August 2012	Ren has his second spine surgery (a laminectomy) in the lumbar spine; Stow is diagnosed with C-diff and a MRSA infection.
March 2013	Moe accepts a tenure-track position.
April 2013	Stow has an endoscopy, colonoscopy, and cystoscopy to determine cause of multiple infections and repeated “failure to thrive.”
May 2013	Stow turns 2.
July 2013	Family moves from one small midwestern town to a another small midwestern town.
August 2013	Moe starts new job.
November 2013	Ren has first his lumbar fusion surgery.
Winter 2013/2014	Polar vortex—Ren doesn’t leave the house from November until April. Moe shovels a LOT of snow.
March 2014	Ren and Moe go to Mayo Clinic to see if anything can be done for the spine. They are told (paraphrasing), "The spine is bad. It won't get better. Learn to live with pain."
May 2014	Stow turns 3.
September 2014	Ren has a 2-level fusion in his cervical spine.
May 2015	Stow turns 4.
September 2015	Ren diagnosed with severe depression.
November 2015	Spine surgeon discovers spinal cord is at risk of being permanently damaged due to stenosis.
December 2015	Ren has a second lumbar fusion and doesn’t leave the house from December to April.
February 2016	Stow is preliminarily diagnosed with autism.
May 2016	Stow turns 5.
December 2016	Family completes first year since 2010 that no one is hospitalized.
March 2017	Stow is formally diagnosed with autism after extensive testing.
May 2017	Ren’s kyphosis is so bad, they (Ren, Moe, and the specialists) determine it needs to be fixed so Ren can have a chance at a better quality of life. Stow turns 6.
July 2017	Ren has a spinal fusion from T2-S1 that requires 140 staples. He doesn't leave the house for anything except doctor's appointments until October.
August 2017	Ren hospitalized for heart attack symptoms.
September 2017	Ren hospitalized with double pulmonary emboli.
December 2017	Lung cancer scare for Ren.
January 2018	Doctor suspects bone bruise in femur and tells Ren he has to limit walking for six weeks.
May 2018	Stow turns 7.
December 2018	Moe gets tenure. Ren cleared by spine surgeon’s office after x-rays and exam show fusion looking good, completing only the second year since 2010 that no one was hospitalized.
January 2019	Polar vortex. Ren starts feeling new pain and hearing new noises coming from his lower back.
April 2019	After months of phone consultations, Ren finally agrees to be seen at spine center again.
May 2019	Spine doctor discovers broken rods. Stow turns 8.

When I am looking on the bright side, I remind myself that these circumstances would test the strongest of families, and I tell myself we should be proud of how we've pulled through and found humor and joy even in the hardest times. But, when I can't find the bright side, I wonder why the hits just keep coming and doubt that I have it in me to keep fighting.

I've promised myself and my readers that this blog will always be "real," and sometimes real means that I don't know what comes next or whether we have the grit and strength necessary to face it.  I don't know how we go on from here, but I do know that we have a spine consult scheduled for this week and that Ren and I will do what we can to keep moving forward until we just can't do it anymore.