The Heart It Races Again

Remember back when Sky had Supraventricular Tachycardia (SVT) and ended up getting a heart ablation (link)? Well, funny thing (and by "funny" I mean "Are you kidding me with this?"), now Falcon has SVT. Funnier, SVT is rarely hereditary, and when it is, it’s a specific type of SVT that neither of the kids has/had. I guess that either means that we're playing really tight odds or that our family is in the process of helping doctors discover a new hereditary component to SVTs. 

It's starting to feel pretty Groundhog’s-Day-y. Apparently the early high school years are a perfect time for our kids' hearts to decide to go out of pocket, literally. It starts the same way; they hit a growth spurt and then start getting light headed whenever they stand up quickly. There’s a name for this: orthostatic hypotension. And, it’s pretty common as autonomic nervous system learns to adjust to the rapidly changing teenage body. That doesn’t make it any less weird to have your kid passing out or almost passing out every time they stand up. Keeping well hydrated and changing positions more slowly are the treatments for this, but you might as well ask my kids to climb Mt. Everest or cure cancer because they seem to find it impossible to do these things.

I've decided to add random Lego plant pictures to this post. 

At some point the kid’s body should regulate. The problem is that every body is different, so it’s hard to know when to worry. In fact, I’ve decided that parenting is one long exercise in trying to figure out if I should be worried. 

So, for awhile Falcon was getting dizzy when she stood up, and then she seemed not to, at least not at home. But one day a couple of months ago, Falcon mentioned that she has passed out or almost passed out at school a few times even though she wasn't in the process of standing up when it happened. When I pressed for more information, she described feeling like her heart was racing or that she couldn't catch her breath. She also noticed her Apple Watch heart rate readings shoot over 100 fairly regularly, even when she was just sitting. This definitely didn't sound like the usual syncope.

Did you know they had so many different types of Lego plants? Stow did.

We managed to get an echocardiogram and a 7-day holter monitor for her fairly quickly, but when we went to the local cardiologist for a follow up appointment, he had no idea where her test results were. Given how many times Falcon had pushed the button to record episodes, we were both sure that SOMETHING was up. So when, without any data to prove it, the doctor told us, "Your job is to tell me what is going on. My job is to worry," it was a little hard to believe he planned to do much. This proved to be true when Falcon texted him during an episode (like he told her to do), and he never responded. 

By the time we received a letter from him in the mail (apparently he never calls--only sends letters), I had already asked Falcon's primary care doctor to start the process of referring her to the university pediatric hospital an hour away. I was glad I had taken this step when I saw the cardiologist's letter to her: "Falcon, Thank you for letting me treat you. We got the test results. Your heart was fast a couple of times." I can't imagine a more unfulfilling letter. When Falcon's regular doctor sent the referral he also sent a copy of her test results to me. They clearly state Falcon has a few things going on with her heart and that one of them is SVT. Given how quickly the university pediatric cardiologist responded when they saw Sky's SVT on the heart monitor, the local cardiologist's lackadaisical approach to things seemed mind boggling. 

Are the flower pictures distracting you? I just thought they might add some color.

Now somehow we find ourselves on the same path we traveled with Sky. The nurse practitioner who saw Falcon at the cardiology clinic at the pediatric hospital scheduled an appointment for her to see the electrophysiologist, the same doctor Sky saw. We don’t know what the best treatment option will be for her, but at least I have a really good idea what the doctor is likely to say!

2024 has been a weird year so far.

Postscript:

I put these songs back on my current playlist in honor of Falcon's diagnosis. She was simultaneously amused and appalled when I first played them for her, but I heard one of them coming from her room yesterday, so I guess they made her playlist, too!

Click the links to hear them on Spotify:

Dr. Dog, "Heart It Races"

Sia, "Elastic Heart"

Tune-Yards, "Heart Attack"

The Fallout

So where does the story go next? I suppose it goes the only way it can.

Stow missed two full days of school followed by two days at school without going to any classes and then two more days when he went to half of his classes but didn't quite make it to the end of the day. 

After an unbelievably slow start, the district finally figured out how they should respond to the incident. It took nearly 48 hours before I heard from anyone at the school (the principal) and another day and a half for the superintendent to reach out with a plan for Stow's safe return. In the interim, we only got bits and pieces of information from friends. If the admin was addressing the issue and making plans behind closed doors, they forgot to tell us, which meant that even if Stow felt ok, we couldn't have sent him back to school. On the bright side, thanks to this situation, the district now has clearer policies on how to communicate with families who have experienced something like we did as well as on how to manage incidents at non-school, school-adjacent events.

I can’t say much about how the discipline aspect of this issue was dealt with, but I can tell you that the district has been quick to schedule convocations about bullying in a number of the schools. They also seem to be listening when I tell them that none of this would have happened had there been better support for Stow during the school day. Our ideas about what that support should look like differ, but at least the conversation is happening. 

And, Stow? As with so many other things, it is hard to tell where he is with all of this. He doesn't sleep as well as he did before the concussion, and he doesn't feel like doing anything that requires concentration or a focus on details. His anxiety level is high, but that seems to have less to do with a fear of being hit again and more to do with not feeling well and having his routine disrupted. Our next step is an IEP meeting during which we will try to figure out how to mitigate potential negative impacts on his academic and social progress.

Shiro finally found a cat who will be patient with her

A cat in the box

*****

Coda: Bunny Pearl

During all of this, we have also been adjusting to a new cat. 

We got Bunny Pearl because Falcon was staring down a really scary health diagnosis. She hates anything to do with needles, so any time she gets a shot or a blood draw, it can be a major ordeal. And every time, she asks me to get her another cat. Historically, my answer has always been no. Given what the doctor was saying, though, it looked like she would have many more encounters with needles as we figured out what was going on with her. So, I told Ren we should get another cat. Always practical, he thought we should wait. But once I decided to get a third cat, I couldn't let go of the idea. When Falcon sent the Humane Society link with Bunny Pearl's picture to me, I convinced Ren we'd waited long enough. 

And, the rest is history--well, except for the part where the scary blood test results turned out to be much less frightening because they aren't as accurate in kids. On the Wednesday that we took Stow back to school for the first time, we also took Falcon to the pediatric specialty clinic an hour away. Not knowing how Stow would do at school or what the doctor would tell us at Falcon's appointment made for an especially tense day. In the end, though, everything turned out pretty ok.

Bunny Pearl has been here through it all, insisting I pick her up, sit with her for a while, and chill the heck out. Turns out we DID need a new cat but not for the reasons I imagined.

To commemorate the past week, I'm thinking of getting a shirt made that says: "I went to hell and back and all I got was a crazy kitten and this lousy t-shirt."

This is my third post about Stow's concussion.

Part 1 of this story is here.

Part 2 of this story is here.

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. 

What My Kids are Creating These Days, Part 2

 It's been awhile since I posted art by the kids, but have no fear! They have been making all sorts of stuff, and they wanted me to share it with you. 

Next, Falcon.

While Stow's favorite medium is video, Falcon loves making digital art. One day a year or so ago, Falcon asked if she could use my iPad to draw some pictures. Almost immediately, her illustration production exploded. I had no idea you could even DO the things she's figured out how to do on my iPad!

Such cool colors!

Falcon shared some pics for me to show you. These are some she's created recently. She has many, many more including a group of about 50 pictures of characters for a novel she's been imagining. Her interests tend along the fantasy line, but she also likes to draw everyday people and animals. I will post the ones she asked me to share below. You can see more of her art on her Redbubble page (link).

Self portrait

Momo

Dragons:

People:

It's crazy to me how creative and artistically talented my kids are. This definitely has to be from Ren's side of the family. The only work of art of mine that ever got any recognition was a jump roper I made out of wire in the sixth grade. If you like Falcon's stuff, go to her webpage nd/or comment below. I'm sure she'd love the encouragement!

Links:

Falcon's Redbubble page

Go back to part 1

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

Happy Birthday, Falcon!

The fiercest girl I know is turning 13 this week. We used to call her Pink on this blog, but she has stretched well beyond the limits of such a diminutive name. I asked her what she wanted to be called instead, and she said, "Falcon, no, Dragon!" and then settled on Falcon, so that is what I shall call her.

One of Falcon's dragons.

When I found out Falcon was going to be a girl, I have to admit that I panicked a bit. What if she liked pink, and princesses, and ballet? What if she wanted to play with dolls and have tea parties? Boys I could understand, but girls? I wasn't so sure. 

In her earliest years, I did my best to limit her exposure to all the girly-fied clothes and toys, but she still came home from daycare wanting to wear sparkly shoes and live in a castle. It wasn't that I thought those things were bad so much as I simply worried that I wouldn't be able to relate to a kid who liked them. Looking back, I know how stupid I was. As a parent, I can do whatever I can to try to ensure the kids have access a wide range of ideas and beliefs and they will still pick and choose what makes the most sense to them based on a whole bunch of different influences, some of which I simply can't control.

So, I let Falcon wear princess dresses and sparkly shoes, and she accumulated so many pink things over the first several years of her life, it looked like a unicorn had barfed in her closet. Once, when she was 3 or 4, she tried to get me to buy her duct tape and feminine pads because both were pink, and it didn't matter WHAT they were used for. Lucky for both of us, I put my foot down when she wanted to paint her room in our new house pink (we went with pale yellow) because eventually, she stopped liking pink. She stopped liking it so much that if an article of clothes or a notebook cover or anything else has even a hint of it, she will refuse it on the spot.

When you're a "neurotypical" kid coming after an older sibling with autism, life can be challenging. For years, poor Falcon couldn't cry when she was hurt or upset because it would trigger her brother Sky, making it nearly impossible for us to comfort her. On her birthday, Sky would become so anxious and dysregulated, that he would insist on "helping" her open her presents and then "showing her how to use her toys" before she even had a chance to play with them. Often she had to sit and patiently wait for him to finish playing with her new toys before she could try them. She spent much of her early years catering to her older brother's needs--sitting in waiting rooms at therapy sessions and ALWAYS playing what he wanted to play exactly how he wanted to play it because he had so little capacity for flexibility.

Then along came Stow, who bookended her with even more autism, and before any of us could catch our breath, Ren's spine went south.

Last winter, when Ren was still recovering from spine surgery number seven, I tried to get the kids to help me put out the Christmas lights. Before he could even get out the door, Sky started obsessing about all the things we might do wrong, got overwhelmed, and shut himself in his room to play computer games. Meanwhile, Stow came outside with a shovel in his hand and started digging small holes in the yard. But, Falcon? Falcon was there steady and ready to help. I told her I was sorry that this was how things were, but looking at her and thinking about all the ways she has stepped up over the years, I knew that we could build one hell of a matriarchy, the two of us.

More Falcon art.

Falcon is fierce because when Stow has a meltdown, she runs toward him and not away from him, even though we've asked her a thousand times to focus on protecting herself. She runs toward him because she knows she can help calm him in a way no one else can.

And more...

Falcon is fierce because she never, ever backs down on what she believes is right, and she will go to the mat for a friend or even for someone she doesn't know all that well if she thinks they need a hand.

But, maybe most of all, Falcon is fierce because she is the most empathetic and sensitive person I know, and instead of trying to hide her feelings or toughen up, she continues to look for ways to be herself and express those feelings. Lately, that has meant that she writes and illustrates the most fantastic stories about warrior girls who go on amazing journeys to save the weak and mistreated. Her empathy reaches beyond humans--I've never met a cat or dog or horse that didn't immediately love and respond positively to her. 

Most mornings I come out to find Falcon reading or writing surrounded by the cats.

Falcon is fierce, and to me, she's also just a little bit magical. In our world of concrete, black and white thinkers who can sometimes take language way too literally or just a little bit wrong, Falcon has a knack for knowing the very thing I will think is funny. We have a long list of past moments with the boys that we remind each other of when things are a bit too intense around here. The other day, for example, out of the blue, Stow said, "My balls reflect better than anyone else in my whole class." Needless to say, it took us a minute to figure out that he was talking about his awesome goalie skills in soccer (He meant to say, "I deflect balls better than anyone else in my class.") Sometimes she just has to say a single word, and we're both rolling on the floor. Falcon also always mixes the pancake or waffle batter on the weekends, comes up with more baking and craft schemes than I ever could, and is the first cheerful face I see every morning. I honestly don't think I could be luckier.

As you're going about your business this week, please send some positive vibes for this amazing girl so she has an amazing birthday free of brotherly meltdowns!

Falcon's picture of Stow's favorite panda.