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.

There Are Bears Everywhere

You’ve probably heard about the man vs bear thing, but in case you haven’t: Women are being asked whether they would rather encounter a bear or a strange man if they were alone in the woods. A majority of women have said they'd rather meet a bear, and this has shocked a lot of men.

There are many reasons women have offered for choosing bear. Here are a few of them:

• A bear’s motives are easier to understand.
• A bear's actions are easier to anticipate.
• No one will doubt you if you say you have been attacked by a bear.
• A bear can't gaslight you.
• You won’t be blamed for being attacked by a bear.
• A bear won’t sexually assault you.
• You won’t have to worry about whether you live in a state that forbids you to terminate a pregnancy resulting from a bear attack.
• If a bear attacks you, it will be punished harshly (i.e. euthanized).
• You don’t have to worry about running into the bear again.

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To be clear, my answer is neither. I would rather have a peaceful walk alone in the woods without experiencing terror. But also, whether I encounter a man or a bear, I’m going to react in a similar way. I’ll feel anxious and a bit sick to my stomach. My heart rate will quicken, and I will get an adrenaline rush. I will avoid eye contact and do whatever I can to put distance between myself and the man/bear, and if that doesn’t work, I will prepare to defend myself. 

But, see, I already do those things when I’m walking down the street or in a parking lot at night or on trails (in a part of the world where there are no bears) or pretty much anywhere that I encounter a strange man when I am alone. Instinctively, I gauge how closely I am being followed and change directions or cross the street or duck into a store if a man is keeping pace or speeding up behind me. I have my keys ready and check the backseat of my car when I get into it at night. I also decide not to do things I want to do, like go hiking alone, because there is a chance it will be unsafe. 

In a sense, women spend their whole lives preparing to encounter (or trying to avoid) bears.

I don’t know, but I imagine it would be hard for most men to fathom this. I imagine that most men don’t understand what it is like to start to learn about bears in elementary school when boys pull up our dresses. Or in middle school when they ogle or touch our budding breasts. Or in high school when they laugh about who is “easy” or refer to our classmates as sluts.

Do men know what it’s like to buy our daughters rape whistles, alarms, and/or mace and to teach them the same things our moms taught us? The list of dos and don’ts goes on forever: Don’t walk alone, especially at night. Always keep an eye on your drink. Don’t go alone to a guy’s room. Don't wear noise-cancelling earbuds when you are out running. Try to get an apartment on the second or third floor but never the first, etc, etc, etc. We have no choice but to prepare to defend ourselves and to follow this impossibly long list because we have friends, relatives, and acquaintances who have been assaulted and then asked why they didn’t protect themselves better.

Being a woman is exhausting for a lot of reasons, but one of the biggest ones is that we must always be vigilant against potential encounters with bears. And, it doesn't matter that a bear hasn't gotten us, yet, because there is always the chance that one will. 

Of course not all men are bears, but enough of them are that we can never let our guard down.

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Listen, I love men. Some of my favorite people in the world are men. But that doesn't change the fact that I live in a world where being a woman is risky and exhausting. It also doesn't change the fact that we still have a long way to go before women feel safe and heard and respected. 

We need the help of all the good men out there. It's not enough to acknowledge the disparities between the experiences of men and women; men need to actively support women by working against the things that make life challenging for them. So, here are some suggestions**:

• Change directions or cross the street if you happen to encounter a woman alone.
• Speak out against sexist or misogynistic language or behavior.
• Listen to and believe women, even when what they are saying seems unbelievable.
• In meetings where their voices aren't being heard no matter how loud they are speaking, echo their statements while giving them credit for them.
• Be the first to volunteer to send emails, organize meetings, serve food, make copies, take minutes, or do any of the other tasks that tend to fall to women, even though that's not their job.
• At home, know when the kids have practice/lessons/school events and get them where they need to go without being asked or reminded.
• Take initiative on scheduling appointments for them.
• Take over the organization of household chores.
• Decide what to make for dinner and do the shopping yourself.
• Be emotionally available for the kids so they come to you with their problems as often as they go to their mom.

Maybe you are already doing these things. If so, awesome! If not and you want to know how to help, this is a good place to start. 

**Obviously, you can take them or leave them.

The Magic of Bunny Pearl

Every time we bring home a new cat, I'm always a bit amazed by how they seem to find their place in the ecosystem of the house. As everyone's new BFF, Bunny Pearl (who should have been named Kevin, or maybe Birdie) has taken this to a whole new level. 

Bunny P and Taro

Somehow she has managed to befriend all of the other animals in the house--even Momo who absolutely does not need (or want) your love, or your attention, or, really, even your existence. Bunny Pearl can get anyone to snuggle up to her. I was surprised when nervous Taro slept with her but absolutely astounded when Falcon sent a picture of her sleeping with MOMO. 

Bunny P and Momo

Not only do they all seem to like her, but Bunny Pearl has also helped them to start liking, or at least tolerating, each other. Before her, Momo never spent time near the dog and Taro wouldn't even come downstairs. Now we occasionally see all four of them hanging out with us in the living room in the evenings.

Taro!

Shiro loves having a little sister. Despite Shiro's complete lack of chill, Bunny Pearl stands her ground, unfazed when the dog licks her face or barrels into her. Both of them meet me at the door when I come home from work and follow me around until I've put my things away and changed my clothes. They won't leave me alone until they're sure they've received enough pets. Lately they seem to egg one another on. Both come running when they hear the ice maker or the air popper, and they fight over whatever I drop. Bunny P and Shiro take turns begging at the table all doe-eyed. And, since Bunny P gets on the counters, Shiro thinks she should, too. Double trouble.

Bunny P and Shiro

Honestly, though, the real Magic of Bunny Pearl is the enthusiasm with which she engages with humans. She likes to show off for guests. She waits just outside a closed door so she can catch us up on the latest news with her unrelenting meowing. She licks our faces (and hands and toes) like a dog who hasn't seen its owner in years. She prefers to be carried like baby. In fact, her favorite position is cradled in our arms with her head and feet dangling. I had no idea cats could be so floppy. 

Honestly, I'm not even sure Bunny Pearl is a cat. Maybe she's an angel who hasn't earned her wings, yet. That might explain why she falls off of things all the time! 

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"