About two years ago, our neurologist warned us to start looking for seizures. "You're very lucky she hasn't had any yet given her diagnosis," he said, "but it's very common for seizures to begin in these kids around the age of 6." And with seizures come many more issues that we do not want.
So for me, Freyja turning six late last year was a little like Sally J. Freedman's dad turning 42. (I suspect that no one remembers that Judy Blume book but me.) For me, 42 came and went without incident. And now Freyja is nearly seven. She has never had a seizure. She also has not yet lost a tooth -- and thank God for that because when I explained to her upon noticing one loose tooth that all her teeth would at some point soon fall out and be replaced by newer, bigger, stronger teeth, her eyes got wide with surprise and she burst into terrified hysterics. She is, believe it or not, starting piano lessons. She's also learning to read. It's a true miracle that she has memorized a score or more of sight words and can detect patterns and sounds well enough to painstakingly decipher a level one reader with assistance. She struggles to maintain her focus and when she's had it, she will manipulate you sweetly and subtly to divert your attention too. ("I love your earrings!" or "Did you get a haircut?" she will say, hoping the flattery will butter you up so much that you'll forget all about the task at hand. Don't fall for it!) She is a smart, silly, and sassy kiddo. She is moving on to first grade in the fall and despite her many, many related services, pullouts and therapies, still loves school more than anyone I have ever known. Things are mostly really, really good.
Usually, her sass is cute. Other times, it's infuriating. She can be wildly inflexible, rigid, uncompromising. A hundred times a day (or maybe just once or twice, but it feels like a hundred) she will dig her heels in, furrow her brow and say no. I flush with anger and as I do, I remember that same neurologist at that same visit telling me not only about seizures, but making predictions about her behavior and how to deal with it. "You're going to have to parent her differently than you do Thora," he advised offhandedly. "You're going to have to give in when it doesn't make sense." I had no idea what he meant until several visits later when some interesting behaviors and traits started to emerge. It turns out that behavior and emotion regulation are controlled by the cerebellum, so while she will likely not develop behavioral issues worthy of additional diagnoses, we will most certainly see bits and pieces of lots of disorders we'd rather have nothing to do with. Her neurologist says we could see aspects of autism, ADD, ADHD, OCD, ODD, even psychosis. An alphabet soup of letters, but none that spell necessary treatment any of those issues. Just enough to be on the lookout. "I would try to manage the behaviors as best as you can on your own, and only consider medication if any of it disrupts her learning. Remember, you will have to parent her differently. Take it as it comes."
I don't like that. I want things to be equitable. It would be so much easier to treat both of my children the same way, to hold them both accountable for their behavior in the same way, to proclaim that I don't see disability. I love making the rules and if I can't make them, I at least like understanding the rules, discussing the rules, explaining the rules. I'm even okay with questioning the rules and rewriting the rules, as long as it's reasonable and we're all on the same page. But when it comes to raising humans with different abilities and different needs and different stories, this goes out the window. I think of myself as a (mostly) even-tempered mother, evenly distributing my time between my kids, disciplining and rewarding in generally the same way. But that's lazy parenting at best and flat out shitty parenting at worst.
When I was a child, my mother's automatic response to my questions was "because I said so." I am a 45 year becauseIsaidso veteran and I can think of no easier way to shut a child down and to shut a child out than saying "because I said so." BecauseIsaidso-ing is more than lazy; it's downright cruel. So when Thora complains that Freyja gets out of doing chores that she then has to do for both of them, I glare at her and I almost think "because I said so" at her but before I even complete that thought, I sigh and sit her down and we talk about it. Again. I launch into how Freyja is not able bodied enough to bus her dishes, to fold and put away her laundry. She doesn't have the attention span to sit at the table for an entire meal most of the time. She needs help feeding herself, dressing herself, going to the bathroom. She requires assistance. She is underweight and small, so we offer her seconds and even thirds of everything. At bedtime I read book after book to Freyja while Thora sits on her bed across the room reading to herself, wearing noise canceling headphones so she can concentrate. She complains that she has to clear her sister's place, put away her sister's clothes, that her sister gets to snuggle and read with me at night. But because I cannot bring myself to "because I said so" my child, I explain again and again why. You know why, I say, and then I explain it again. It's better to be a broken record than to outright invalidate, isn't it? And Thora gets it. She really does understand. She just wants me to acknowledge that it's not fair and that as such, she is fully justified in waking me at dawn while Johnny and Freyja are still dead asleep for a mama-Thora bike ride or some other quality time activity that I protest loudly at 5:24 am but by 5:27 am I am roused enough to be over the moon that my other kid has figured out a way to get her need for attention met despite her sister's best efforts not to share me with anyone.
When Freyja complains that Thora gets to ride a bike or a skateboard or her Rollerblades, when Freyja complains that Thora gets to be outside with her friends, that she can climb trees, that she goes to nature camp, coding camp, swimming camp, that she gets to have sleepovers, take art classes, go on hikes. The reason for this one is much more straightforward but a lot harder to talk about. Freyja knows she's different. Sometimes she likes it. But mostly, being the disabled kid is really hard.
Some of her disability is right out there for the world to see and to question and to comment on. Usually, she is patient with people. She encourages questions. She shows off her walker to anyone who looks at it. "It's my walker," she explains proudly most days. "I need it because my legs don't work like yours. Do you want to try it?" or when we bump into the neighborhood kids playing outside, she'll eye their pink bikes with tassels and lights and bells and say, "I don't know how to ride a bike because my balance isn't good." On those days, I am amazed at her resilience and understanding. Other days she is less patient. "I was born this way," she snapped at a girl who kept pointing at Freyja to her mother in Whole Foods a couple weeks ago. Freyja was tired and hungry and I knew it but the other kid didn't, and she turned away, ashamed of herself.
Other aspects of her disability you can't see and she can't explain. She gets frustrated easily and when she does, words fail her. Her sass can turn to anger more quickly than you'd expect, and it catches us off guard because it seems to come out of nowhere and catch her off guard as well. I remembered the neurologist's warning, and how it made so little sense at the time. Little behavioral contradictions pop up every day. She doesn't mind making (and leaving) a huge mess, but she follows me around the kitchen obsessively shutting drawers and slamming cabinet and pantry doors I've absently left ajar. Out of nowhere she reminds me of something I'd offhandedly promised her weeks ago (mama, remember when you said we'd go to the nail salon and then buy a new pink lipstick) but she has no recollection of an entire book we read just last night. She transitions fairly easily (I'm ready to go to bed now, so go sit in your office and wait there for me to fall asleep and then check on me in ten minutes, okay, mama?) but she struggles with sudden change. If she has her mind set on something, she absolutely must see it through or all hell breaks loose.
This last one is especially challenging for the parent who runs out of patience all at once. In other words, me. And Johnny. And probably every parent I know. This is me in a nutshell: patient patient patient patient patient patient gotosleeprightnowIsaidnow! And, to myself: whydidI havekidsagainIcan'tdothis. All in one breath I go from absolute angel mama to my kids's worst nightmare. It doesn't happen often but when it does, and Freyja has her mind set on something. she is unwavering, undeterred, completely inflexible and uncompromising. It's awful.
When I'm not in it, it's easy for me to wax poetic about the role of the parent. We are guides. We teach children resilience in the face of frustration. Life is frustrating. We can't fix that. We can't protect them from it. We can only prepare them. But at the same time kids need structure. They need discipline. They need to be told no. They can't have everything they want. They have to learn or they'll walk all over us. Right?
Every six year old does this, right? (Except Thora never did.) But okay, it's normal and age appropriate. Now add the part of Freyja's disability you can't see. The sum is that telling Freyja she can't finish telling me about her rose-thorn-bud for the day because it's 7:02 is becauseIsaidso. A rose by any other name is still a rose, isn't it? I do not want to push my child down the ugly rabbit hole that I spent so much time in as a child myself. Any child would feel disenfranchised by my first drawing a random line in the sand and then punishing her for stepping over it today when it wasn't there yesterday or the day before. And Freyja simply does not have the resilience to say "Mama, I do not understand this." Instead, because of her neurological makeup, she freaks the fuck out. Which pushes my last nerve and then I freak the fuck out too, only louder and with nastier words because while I don't like it when she curses, who's going to stop me because I'm the adult that's why, and then she's screaming and I'm screaming too and then Thora's screaming and everybody's miserable. Nobody goes to sleep, nobody gets the doll or the cup of water, nobody gets to go downstairs and read a novel. Nobody wins. And because of her neurological mishegoss, once Freyja gets stuck it is very, very hard to get her unstuck. Once she's pushed herself past a certain emotional point, she just cannot regulate her emotions well enough to pull herself back. She can't self-soothe. So what happens? Yep: that's when I give in. She gets the thing she originally wanted so long ago. But I am resentful by this point, so I throw the thing at her, refuse to be nice about it, tapping my foot and muttering under my breath for her to hurry up already. And everybody's still miserable.
A rested, saner version of me knows that these moments are not battles. Or, rather, they don't have to be. This is not the kind of situation that requires me to be the disciplinarian, the louder voice, the powerful adult. Letting her finish her book or get that doll not this doll or have peanut butter and jelly when there's a full plate of mac and cheese in front of her that no one else will eat is not being soft or spoiling my kid. At worst it's me picking my battles. At best it's me seeing her, hearing her, validating her as an equal part of the equation. When her requests, or, let's be real, her demands, seem arbitrary and annoying to me, I have to take a look at how my rules seem to her. Bedtime is generally at 7:00, but we routinely break this rule when I end up working late, when my phone rings, when it's Sunday Night Movie Night and the movie runs long, when Thora is so into her chapter of Harry Potter that she begs to keep the light on for ten more minutes. So why not break the rule again tonight so Freyja can rinse with her bubble gum flavored mouthwash one more time or find the Groovy Girl with the blue hair not the pink and purple hair? If I chase her around shoving as much high-nutrient, high-calorie food in her as I possibly can, why indeed would I say no to making a PB&J even if it means the chickens end up eating her untouched mac and cheese because she changed her mind about what she wanted after I started cooking? Don't we both win in all cases? So what if it takes two more minutes for her to get in bed with cleaner teeth, the right doll, one more cup of water? She goes to bed happily and I have my evening minutes two minutes. So what if I have to make a PB&J when there's perfectly good food right her? She'll get a good meal (and so will the chickens) and really who the fuck cares anyway? Day in and day out, I beg her to eat, so why push back when she wants something different than what I made? It's a peanut butter sandwich, not a six course meal. My rules must seem as random and unimportant to her as her requests to bend the rules I set seem to me.
Saying because I said so, or living the because I said so way of life, just feels wrong. Why strive to win a fight with a six year old? Why even engage in a fight with a six year old? And a six year old with a disability we don't fully understand? To prove a point? To not feel manipulated? To be right? To feel powerful? As a young person, I always wanted to be right. I loved having the last word, I loved correcting everyone around me. I did it without even thinking. My mother's dyslexia and her Lawn-Guyland accent meant she misspelled and mispronounced words time and time again. She added consonants to some words where there were none and subtracted others where they were intended to be. My friend Dina because Deener, my Nana was always Nanner. She'd mispronounce something for the eight hundredth time and for the eight hundredth time my father and I would both automatically -- and somewhat gleefully, I have to admit -- correct her. "Whatevah," she'd respond, not even listening. "Uccch. Mom!" I'd shriek, every single time. "It's Nah-nah. Whatev-errrr. Whatever. Why can't you get it right?!" I lived in a perpetual state of exasperation. My mother might have becauseIsaidsoed me night and day, but I was smarter than she was and I knew it and I wanted her to know it. Whatever she mispronounced, mispelled, misremembered, whatever she couldn't get right, it was my job to point it out. And to what end? My mother never listened. Or if she did, it didn't change anything. It was frustrating for everyone,and for nothing. But I did it anyway.
Until recently. Mercifully, being right at any cost has finally lost its appeal. Johnny got so sick of me correcting him that he finally said "Just stop it. It's too easy for you. I know you're smart. You're always right and I'm an easy target and it makes me feel like I shouldn't even open my mouth around you." Which made me feel like a bully and I regretted all the times I was horrible to my mother because I was trying to take power back from her unequivocal, unwavering becauseIsaidso mentality. What this looks like when I am with my mother or my spouse is me biting my lip, holding my tongue, gritting my teeth to stay quiet until the moment passes. Would I rather be right or have peace? I'm going with peace.
So when it's bedtime and I'm at my wits end and will absolutely lose my everloving mind if I don't get out of their room righthtisinstant and Freyja wants to finish telling me her shaggy dog story or get a drink of water or do the mouthwash again because the first time she didn't remember to swish long enough, and I talk over her protests and she howls and I howl and we're suddenly both very, very unhappy, and I'm tempted to scream "because I said so!" and flee, leaving her in a crumpled heap of tears and exhaustion, feeling entitled to my evening and my peace and quiet, it's suddenly so easy to see that Freyja's tenacity is just part of her neurology. When she narrows her eyes and sets her jaw, she is not saying "I am going to win this fight" or "it's my way or the highway." She needs help. She's saying help me, Mama. Help me.
I have to remember that I am the grownup and that I can change my strategy. Clearly what I am doing is benefiting no one, myself included. Saying yes to minor things is not the same thing as abdicating all responsibility. It's not the same thing as spoiling my children, giving them no structure. It's not the same as letting Freyja get whatever she wants. It's recognizing a variety of things: that I don't want to turn into my mother (sorry, mom), that I have better communication skills than I was initially raised with, that my kid needs more from me than I am prepared to give because her sister doesn't do this and it is therefore unjust and unfair and wrong. That I have to be more thoughtful and intentional than fair, that I have to actually pay attention to what might be under someone's words. I have to be confident enough as a parent and a human to recognize that raising Freyja is a dialogue, a give and take, an ongoing opportunity to check myself. When I do this, there is more harmony. And magically, when I say no for a real reason: that's not safe, we have to go to X instead, we're out of mouthwash or peanut butter or whatever but I'll pick some up tomorrow, we left the doll in the car, she seems to be able to hear it. She's not constantly braced for a fight, and neither am I.
I can so relate to this. My twins did not leave the land of prematurity unscathed like so many others. Many hugs to you.ReplyDelete
Have you heard about Roadrunner sports and their adaptive bikes? They have a program that provides adaptive bikes for kids with special needs. It’s an amazing program. My son got an adaptive bike through them last summer. :)