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"

SPD, Interoception, and Figuring Out Whether a Kid Is Really Injured

In my previous post I wrote about how since Stow always thinks he has broken a bone whenever he twists an ankle or stubs a toe or a finger, we have a difficult time knowing when something is actually serious. This isn't because he is trying to get attention or be melodramatic but because, thanks to sensory processing disorder (SPD), he is hypersentive to touch and also has a heightened sense of what’s going on inside his body (this sense is called interoception). Typically, we have to wait to see how he seems one or two days after any kind of injury to determine whether it requires medical attention.

After taking a baseball to the tip of his middle finger on Wednesday (you know, when I refused to go pick him up because we wanted him to make it through a whole week of school), we waited until Thursday to see how he was feeling. When he said it hurt more, and he felt like he could feel a bone moving 🤢, I called to make an appointment.*** By the time we finally saw his regular doctor, the X-ray technicians had gone home for the day, so it took another day to get the x-ray and results. Late Friday, they confirmed it was broken.

He loved that the X-ray technician told him to “give her the finger”--lol.

The orthopedic doctor's office told me they couldn’t get him in until Wednesday. An autistic kid with a hyper-elevated sense of interoception and a good dose of anxiety who now knows his finger is broken can NOT wait an additional five days to have his injury treated. Just, no.

So, today we went to the orthopedic walk-in clinic in another town and got a diagnosis and the appropriate splint. Fingers crossed that this won’t require surgery (and, yes, I’m aware of my bad pun—sometimes I just can’t help it).

Fortunately, Stow finds humor in the fact that he will be “flipping people off” for the next six weeks because I’m having less fun with this. In fact I’m about ready to never let him leave the house again, at least not unless he’s wrapped from head to toe in bubble wrap.

***If you are wondering why I didn't just take him to the ER: 1) He doesn't like change so wanted to see his usual doctor, and 2) Waiting can be really hard for autistic kids, and I didn't want to add the stress of an interminable ER wait--of course, if we thought it was an injury that required immediate attention, we would have taken him anyway, but since we had it splinted, and he wasn't in excruciating pain, we waited.

Another Call from the School Nurse

When the school nurse called today, she led with, "This time it's not his head" before proceeding to tell me that Stow suffered a jammed (and hopefully not broken) finger when a softball hit his hand during PE. Like the day of the second concussion, the call came when Ren and I were out together. Since Ren and I rarely go out together especially during the academic year, the timing of the call was unsettling. We all, the nurse included, have residual trauma from what has gone on this year.

Stow insisted on talking to me; his voice told me he was struggling to keep it together. He was sure his finger was broken and, even if it wasn't, that he needed to come home because there was no way he could focus in class. I reassured him. Told him the nurse would give him ibuprofen and ice and tape his fingers together and that I would call and check on him. He did not like this solution, but he agreed to it.

When he got home, the three middle fingers of his left hand were taped together with a small ice pack incorporated into the mix. Bless the school nurse. She knows and cares about Stow and can speak his language when he is panicking about an ailment. Stow often thinks his bones are broken, so we will wait until tomorrow before deciding about prompt care. 

Random picture of Bunny Pearl because I couldn't find any other picture would make sense with this post.

Last week, it was consecutive jolts to the head (again in PE) when the basketball came at him faster than he expected it to. Since that led to a headache and nausea, Ren picked Stow up early just to be on the safe side. Concussions and concussion recovery are tricky. 

Having an autistic kid who greatly prefers being home playing video games is also tricky. Once he gets sent home by the nurse a time or two, Stow is much more likely to think he needs to come home if he isn't feeling 100%, and with two concussions under his belt, he often isn't feeling in peak condition. Telling Stow I couldn't pick him up today was hard. I didn't know (and still don't know) if Stow's finger was (is) broken or not, but I knew he needed to stay at school if he could. We've got to get him through a full week of school.

There is no point to this post other than to say we are still here and still making our way through the confusing world of middle school for Stow. The smooth sailing we experienced from the start of school until the first concussion in late October is a distant memory. Just when he seemed to be hitting his stride again, the second concussion happened. Now we struggle to get him to school, to keep him at school, and to help him focus on his school work. He has lost a lot-- his chance to participate in his first bowling season, a band trip to Six Flags, recess, PE, band, his confidence, his memory...

Completely unrelated picture taken by Sky of a train in downtown Chicago. 

Following the second concussion, we had to take some steps I never thought we would have to (I am being intentionally vague here for, you know, reasons). Up until the second concussion, I believed that all of the advocating and educating I was doing ensured that Stow would get the support he needs at school. I mean given all the of 504 and IEP meetings I've attended, I should be a pro, right? But after seeing the way the school handled the second concussion, it became exceedingly clear to us that the school STILL doesn't know how to effectively support and accommodate Stow. As one of his therapists put it, "They treat autism like it's a behavioral issue when they should be treating it as a developmental delay." 

I can't even count how many times Stow has been disciplined for a behavior directly tied to his poor social skills. And I also can't count the number of times I have been told that he needs to be disciplined so he will learn his lesson. Round and round and round we have gone on this as I have repeatedly explained that the lessons Stow learns from the problems in peer relationships are simply not the same as what his neurotypical classmates learn. And over and over I have asked for two things: a full-time autism specialist on staff with the school or the district and constant line of sight support for Stow. To the first request, I have been told either they can't afford to hire an autism specialist or they can't find someone to provide autism support. And in response to the request for more intentional supervision/support, that Stow is fine and doesn't want to be followed around by an adult. If these two things had been in place, we are fairly certain we wouldn't be talking about concussions right now.

Guess what happened almost immediately after I told the case worker we were working with a special education lawyer? The district hired an autism specialist who will start in the fall. And, the conversation about line of sight supervision shifted from whether he needs support to how they could provide it in ways that would be the least disruptive to his efforts to socialize appropriately with his peers. For the first time, folks on his IEP team acknowledged that THEY DON’T ENTIRELY KNOW HOW TO MEET HIS NEEDS and so want to base future decisions about his accommodations on what the autism specialist advises. OMG, you guys, I have been trying to get them to do this for YEARS.

We can't really afford a lawyer, and I don't believe in being litigious, but if the end result is better support for Stow and all of the other kids like him, then it's worth it.

Shattered

Sometimes when I sit down to do a blog post, it writes itself. Other times, the story that needs told can't find its way out of my head to the keyboard. This is the latter, so bear with me as I wrestle it to the page. And know going in that I am not going to be able to tie this up into some kind of neat parable or object lesson.

*****

The day before I flew across the country for a four-day conference, the school nurse called. I don't know if you ever get calls or emails from school, but they often start with "First, I want you to know that [child] is fine." Or, they don't. And in our case, when they don't, I know I am about to hear something that will upend my day. This call started with, "I'm really sorry, but I have bad news." I braced myself and would be lying if I said my first thought wasn't a combination of panic and the word"f#ck." Because it was.

Ren and I had just pulled into the Target parking lot to pick up things I needed for the trip, and before the nurse even told me what had happened, I knew my day was going to go sideways fast. (My motto isn't "Every day goes south in its own way." for nothing). 

Stow had gotten another concussion. This took me a minute to process. What did she mean? What did THIS mean? How could one kid be THAT unlucky? The nausea set in after I pressed for details. All she knew was that he was hit in the head in PE, but I could tell from the way she said it, that he wasn't hit in some kind of sport accident. I asked her to put Stow on the phone. Stow told me that another boy had hit him. I asked if it could have been an accident. He said, "No, he punched me in the head." 

Now, I can't tell you more than that about what happened because of a lot of reasons I can't go into.

Ren and I quickly finished our business and got to the school. Going in I told Ren I wasn't leaving until I talked to the principal or vice principal. We went to the nurse's office to find Stow, and the nurse told me the results of her concussion evaluation. Stow had all of the symptoms he'd just spent two months getting over--headache, sensitivity to light and sound, nausea, foggy thinking, and dizziness. He was terrified that the second concussion might cause permanent damage and cried when he recounted what happened. Heightened emotions are another sign of a concussion.

Ren and I waited with Stow through the end of the principals' lunch duties and a fire drill (!!  !!!!). Finally, maybe 45 minutes after we got there, the vice principal came to talk with us. I can't tell you what we discussed. I can tell you that Stow went home and to bed, and I talked to his primary care physician and then to the pediatric neurologist we now have as part of his extensive support team. They both told us to keep an eye on him and to put him back on concussion protocol. 

The next day, I flew to the conference that I just couldn't skip, and Stow missed school. He spent most of the next few days in the nurse's office trying to deal with the headaches, nausea, dizziness, and inability to concentrate. Over a week out, he still hasn't made it back to all of his classes. He had to drop out of the bowling team, and he has spent hours with therapists talking about what happened and how to deal with it. I have spent hours talking to various people about what to do.

*****

The day the he got the concussion, Stow was wearing a brand new pair of shoes. He hasn't put them on since. He says they are bad luck. The shoes are the thing that is most noticeable on the grainy video of the incident--the only way I could find him in the crowd of students. Now they sit in our garage, something he was so excited about and is now afraid to wear.

*****

Recently I shared this blog with someone interested in a parent's perspective on raising autistic children. As we have traveled on this path, I have become much more sensitive to my position in this whole thing. I am not a victim. My kids are not broken. They do not need to be fixed. But, and this is a HUGE but, being a "neurospicy" kid in an ablest world is tough. And, watching my kids struggle through this breaks my heart in ways I didn't even know it could be broken. 

Yesterday we saw the video of what happened, and it absolutely shattered me. The incident was hard enough to watch, but what happened after is what undid me. Stow looked so absolutely alone. I could see him at a loss for what to do, searching in vain for someone who might have seen what happened and who might be able help him.

It made me never want to let him leave my side ever again.

Their journey isn't about me. I get that. But, man.