Monday, July 30, 2018

Because I Said So

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. 

Wednesday, October 18, 2017

Message In A Bottle

If you were here right now, you would be here. With me. I might have texted you earlier to tell you what a total crap day today was, what a shit week it’s been and what a completely challenging month I’ve had, and you would have dropped everything to come to me. You would have acted like there was nothing in the world more important than being with me, like there was nothing in the world at all other than me. Never mind that it's your birthday, that you probably have a million other people to see and things to do. For this moment, you let me feel that it's all about me. That is just what you do.

You'd materialize, full of energy, and tell me to grab a scarf and a jacket because we were going out. You'd take me for a fancy massage or to buy a pair of shoes. We'd sit at one of our favorite restaurants and order way too much and I'd talk and you'd listen and you'd wince at my stories and mutter "oooh, that stupid fucker" or "you tell 'em" or some such under your breath as I poured my heart out to you, making me feel like you were my number one fan, my cheerleader. To you, I was always right. Those stupid fuckers just didn't get it, they just didn't understand us.

You'd hold my hand, insist I take the leftover food home for lunch tomorrow, maybe slip me a check when I wasn't looking, with a scribbled note not to spend it on bills but to buy myself something completely frivolous. You'd pass along a book you just finished reading because you knew I'd like it too, you'd put me in a cab and make sure I got home safe. You would text me the next day, asking about that stupid fucker so-and-so. A week later something might appear in my mailbox: a note, another book, some tiny thing that only you would know I wanted or needed. You had a way of making me feel so loved and so important. You didn't hold back. 

Since you've been gone, I've grown a lot. I have had to face so many new and scary things. I do things I never thought I would be able to do, fight for things I never thought I would have to fight for. I look at my babies -- not babies anymore -- and think of you, at that restaurant on Cortelyou, that day when everything changed. Neither of us eating, you holding my brand new firstborn, touching her nose, her cheeks. I think about the text I sent you ten months later -- no words, just the picture of the stick and the little plus sign. You were the first to know. I think of how tragic it is that my girls don't know you. They're growing into beautiful, strong, brave humans. I know you would be so proud of them. In my mind's eye I see you reading to them, advocating for them, snuggling them. You'd be there some afternoons to greet them as they come off the schoolbus. You'd read to them often, give us date nights monthly, go apple picking with us every year. You’d know better than the rest of us how to put Freyja’s braces on, how to get her to swallow a pill, how to get both of them to try new foods. You’d brush Thora’s hair and let Freyja try on all your jewelry, sit patiently through puzzles and Legos and hours of coloring. I think you'd approve of the kind of mom I am becoming, and this thought is more validating than any other compliment or vote of confidence I've ever gotten. And then I remember the last thing you ever said to me, six and a half years ago, wishing me a happy mother's day. You told me you loved me and I believed I was going to hear you say that again and again for the rest of my life.

So much about my life is different now. I think you'd think I work hard at my job, my marriage, my life. I remember you told me once early on that the one thing you wanted to know all those long years was that I was happy. I wasn't then. But I am now, and I think this would bring you great joy. You loved Johnny too -- just because I loved him. You believed in him when many others didn't want to give him a chance. I wish you could see what a wonderful father and partner he has become, just like you knew he would. I think that would make you beam with pride. 

In recent years I've made many big decisions. I'm not sure you would like them all. Do you know I cut my hair off -- never once thinking I might look like a poodle just like you did the last time you cut yours? I have a picture of you with that 'do. You loathed it! I wonder why on earth I thought it would be a good idea to do the same thing. I imagine you laughing with me, maybe even a little at me, lending me one of your Red Sox baseball caps or offering me box of bobby pins to get me through that never-ending awkward stage. Do you know we now live 3 miles from your house? I can't imagine living anywhere else now, and yet I wonder that if you were here whether you'd think the town was big enough for the two of us. And do you know that I met him? You were so reluctant, and while I had you, I never felt the need. But then you were gone and he appeared, almost out of nowhere. And it was wonderful and difficult and somehow totally natural, and then before I knew what was happening, I lost him too. Do you know that he never stopped loving you and me? The three of us had so much unfinished business. Some days it's hard to muster up the ooomph to keep at it without you both, but everything I do, I do for all of us. Do you know how much I miss you? That my unique memory of you lives on in so much that we do and feel and are?

I try not to think about how unfair it all is, how robbed I feel. Instead I think about how lucky I am to know you loved me, that you wanted me. Both of you did. This is a warm and soft blanket I carry around with me everywhere. It energizes me, emboldens me. It's a private little hug I give myself when I need it most. You loved me. You wanted me. My existence has value. 

Friday, September 22, 2017

On Six Years of Freyja-hood

Freyja turns six tomorrow. 

Today was a rainy day of mini-vacation on Cape Cod. There were Mad Libs, there were board games, there was reading, there was the telling of stories. As she got in the bath tonight, I told her the story of her birth and she rolled her eyes and groaned and said "But I already know, Mama!"

Considering the complexity of this child, it's a pretty simple story. I will leave out the drama for the squeamish readers and summarize here: Early one morning, spouse says: I'm cancelling my plans for tonight. I feel like I should stay home just in case. Remembering the way my first birth went, I say, no, go ahead and keep your plans! This baby has another two weeks to go. Have a nice day! And off I go to work and about five hours later I go into labor at my desk. Since the last baby took five days of labor to make up her mind about coming out, I think nothing of the contractions and reassure people that everything's fine and there's no cause for alarm. Then I lose my mucus plug while interviewing a candidate for a position on my team (whom I immediately hire), think I am bleeding to death, go get an emergency ultrasound, am told that I am definitely in labor and that I should under no circumstances go back to the office or go anywhere but straight home. In the cab, I alternate between not wanting to scare the cabbie into thinking I will give birth in the backseat of his car and expressing extreme gratitude that my spouse's spidey sense was dead on. He was home to receive me. Figuring we have a long night ahead of us, I sit on the birthing ball, bouncing and screaming and watching a season and a half of Breaking Bad, try to take a nap as Ina May Gaskin advises, and then lie in the bathtub for so long that I don't realize I am transitioning until I am puking all over myself. Spouse calls midwife when my screams become continuous but for the retching. Midwife shows up in a flash and says "holy shit you're having this baby right here in the bathtub, right now" and seventeen minutes later it's 5:03 am and I have a baby on me and a plate full of Oreos that I cram into my mouth two at a time because my blood sugar is low and giving birth makes me hungry in the kind of way that only a gigantic bag of double-stuf Oreos and a newborn baby can satisfy.  Midwife and doula clean up and clear out, other child wakes up, spouse passes out from exhaustion and I don't sleep well for the next five and a half years. The end. 

So six years ago I was having the homebirth I always wanted, giving birth to a second daughter, completing my family and perfecting my life. 

Five years ago I knew there was something terribly wrong with my baby and was trying desperately to convince everyone else that she needed evaluation and help.

Four years ago I was drowning in diagnoses and medical information, trying to navigate the Early Intervention system in New York City, knowing that if she lived, we would leave. If we stayed, she wouldn't stand a chance. 

Three years ago she was placed in the wrong classroom. I knew it on the first day of school and it took the DOE an entire year to move her. So much precious time wasted.

Two years ago we made the decision to leave our hometown, the Big Apple, where were were both born and raised and where we'd always been sure we would also die. We knew it was the right thing to do to give both of our children what we felt they needed and deserved.

One year ago I felt hope as she started her last year of preschool in a truly integrated, inclusive setting.

And here we are today, getting ready to celebrate her birthday. It's a celebration of life. Her life. Of beating the odds, a day at a time. For the older she gets, the more victorious we feel. Her diagnosis is cruel and unforgiving, but she doesn't know it. It doesn't stop her and she doesn't let anything stop us. We are sleeping a little better now because we mostly believe she will be alive when we go upstairs to rouse her every morning. She is thriving and blossoming and she is just so busy being.

She has big plans for her birthday. She has a fancy dress to wear and wants cake and donuts and presents and family and friends. She tells everyone she sees that she is turning six on September 24th and that she is really excited. But her party is a week later, so she plans to celebrate all week long. And then it will be Halloween soon and she's going to be Princess Anna, who is from Frozen, in case you didn't know. She rattles this all off to the checkout person at the grocery store, the barista at the coffee shop, the bus driver, the lady who cleans the bathrooms in the town center. And they look down at her and I watch them take her in, their eyes running over the walker, the leg braces, and the sparkly eyes and big smile. I see her as they see her and I watch as they fall in love with her and I am proud that she is mine, this little being who spreads joy wherever she goes, warming the hearts of everyone she encounters.   

In a way, Freyja is Milo, the main character in my favorite book of all time, The Phantom Tollbooth. Milo is sent on a journey, the truth of which the King of Dictionopolis and the Mathemagician both know but refuse to tell him until he has returned successful. Instead they wish him well, set him up with an entourage consisting of bugs and dogs to keep him safe, give him tools to fight the demons he will surely encounter, and send him on his way. 

Remember that thing we told you we couldn't tell you until you were back? the kings say to Milo at the festival they hold in his honor upon his return, having rescued the princesses of Sweet Rhyme and Pure Reason and restored them to ruling the kingdom of Wisdom. Yes, he says eagerly. What was it? "It was impossible," one of them says, very seriously. "Completely impossible," says the other.

If Freyja is Milo, then I am the King of Dictionopolis, powerless to fix the plight of my own child but with a head full of all the letters and words in the whole world, and Johnny is the Mathemagician, with a magic staff that rewrites all the formulas and creates solutions to unusual problems. We created this child. We unwittingly set her up for this journey, and now, just shy of six years in, we can look at her and marvel. What we knew would be completely impossible, she has done. 

But I'm never going to tell her that. 

At Back to School night a couple weeks ago, several parents came up to me, introduced themselves, and told me they hear about Freyja every single day from their kids. I smiled and made small talk and chatted about play dates that probably won't ever happen, and I wondered how they knew I was her mother. How did they know? I had no name tag on. I hadn't even opened my mouth. Do I just exude L'Air Du Special Needs Mama somehow? 

I pondered this as I sat down in her tiny chair. We listened to her teacher as she talked about school rules, field trips they needed volunteer chaperones for, allergies in the classroom, ziploc bags full of extra underwear and socks I needed to send in. In seventeen little folders on the tables were seventeen green sheets of paper, upon which we were asked to write down some emergency contact information. Under this was a blank space, at the beginning of which read: "Tell us a little bit about what your hopes and dreams are for your child to achieve this year!" I chewed my pen cap, thinking. I peered over at the mom next to me to peek at what she was writing, but I couldn't see. I wondered what other parents said. I want Junior to be able to read chapter books this year. We hope that Molly continues to benefit from the socialization that preschool provided last year. Who knows? I closed my eyes for a moment and then I wrote: "Freyja is a hardworking, determined child who benefits from an inclusive environment with neurotypical peers as models. Of course we are concerned about her academics but even more important to us is this: We know that schoool, like life, is full of joys and frustrations. We want Freyja to be able to face both as she grows. She will never stop working toward her goals. If she knows you are working with her, she will never ever let you down, so please don't ever give up on her." And I folded the green sheet of paper and dropped it into the pile on the teacher's desk and walked out into the night, back toward home, to my sleeping girls, to the life that I never knew was possible until Freyja came along. 

Friday, September 8, 2017

(Tell Me What Inclusion Looks Like!) This Is What Inclusion Looks Like!

A few weeks ago Freyja and I visited a friend who'd had surgery on his jaw. In order to recover, he had to have his jaw wired shut. Talking was understandably challenging; he spoke through gritted teeth with a wet hiss and a mumble. She looked at him quizzically. "You talk weird!" she said to him. "You talk weird too!" I reminded her. She looked at me in shock. "No I don't, Mama!"
She doesn't know, I realized. Or maybe she doesn't care. As she says over and over, "I'm just Freyja!" In many ways, she's just a kid like your kid and your kid and your kid, only her brain doesn't talk to her body the way your kids' brains do. And she belongs in this classroom and in this school and in this world just like everyone else and she has never been taught anything different.
Her new school is great. It's a public school. Her sister goes there too; they are in the same school for the first time in their lives. The district has wheelchair accessible yellow school buses so they are now riding together. She has a lovely new 1:1 who meets her at our house in the morning and rides the bus too. She works with Freyja all day long, providing individualized instruction when she needs it. Freyja receives many services that she needs: PT, OT, speech, adaptive PE and literacy sessions. And her school has been supportive since we began the transition process last spring. They are doing everything they can to ensure that she is safe and that she has all the tools she needs to succeed. They've watched her walk, measured how well she can reach the sink, the water fountain, the toilet. They've arranged for adaptive seating and adaptive step stools. She's been evaluated for adaptive technology and will be learning to keyboard as the other kiddos learn to write. She is learning to navigate the school with the elevator and ramps, since stairs take her a very long time. And now I have another reason why it's so awesome.
Last Wednesday was her first day. I was a little distracted all day long because I was worried about how she would do. So when my phone rang while I was at a work lunch with five people from out of town, and it was the school's number, I ran out of the restaurant in a panic. "Everything's fine," the voice said. It was the school psychologist. "She's doing great so far." She was calling because some kids already had questions, she said, and she wanted some advice for how to handle it.
I told her that last winter we'd visited her preschool classroom. We talked about her disability openly with the kiddos. We answered their questions, reassuring them that the van she arrived in was not an ambulance, that she was not sick, that she likes the same things as most kids do. She gave all the kids a turn in her walker and they squealed with delight, zooming around the room with it, hopping on one leg to try to get a sense of what it feels like to rely on your arms to walk. It was a good visit, I told her, and we could do something like that again if it's helpful. "Hmmm," she said, thinking. "I don't know if having you come in is the right thing." She paused. "What do you think?"
Well, why don't you ask Freyja? I responded, and she said that was a great idea. An hour later she called back and told me that Freyja was really excited to have us come in with her. So that's what we did.
It made me so happy that they asked Freyja her opinion. It made me so happy that this came up on the first day of school and not halfway through the year. It made me so happy that the school staff wanted to address the other kids' curiosity and questions openly and with respect. This is the kind of thing that encourages inclusivity. It normalizes difference.
When we arrived, the kids were seated on the floor. There were lots of grownups in the room, including the brand new principal. We sat right down on the floor. I read a book I love called Susan Laughs. This book talks about all the things that Susan does and likes and feels. She sings and swims and gets angry and sad and laughs and dresses up and does all the things kids do. It's not until the last page that you see that she uses a wheelchair. I asked if any of the kids like to do ballet and go swimming and play dress up. Hands flew up and many kids started telling us about their swim lessons, their summer vacations, their dance classes, their Batman costume. And then we got to say, well guess what? Freyja loves to dance and to swim and to play dress up too! She's just like you!
We showed the class her braces and her walker and asked them if they knew what they were for. Freyja explained that they both help her walk because her balance isn't good and her legs aren't that strong. A girl with a cast on her arm talked about how long she has to wear it to keep her wrist straight, and I told them that Freyja will likely wear braces on her legs for life to keep her ankles straight. I explained that she isn't sick. Nothing she has is contagious. That they can expect her to apologize if she bonks into them with her walker. They took turns trying her walker and a few asked to try the wheelchair too. Some of the grownups asked Freyja pointed questions about how she gets around the school, what she needs, and how the other kiddos could help her. She answered well and I was proud.
On our way out, the principal caught up with me. "You used to be a teacher, right?" he asked. I admitted that yes, I was. He smiled and said, "it was obvious."
But it wasn't. It doesn't matter that I was a teacher -- my teaching experience is with kids way older than these. I know nothing about early childhood education. What I do know is that we never pretend that Freyja is typical. It shocks me that some families are "in the closet" about their kids' disabilities. That doesn't help anyone! Why pretend that your kid is something she really isn't? Why pretend that everything is a certain kind of normal when being open and honest and visible makes being atypical normal too? When I hear kids whispering about her walker or her braces or her limp, we always stop and talk to them respectfully. We invite questions. We let kids take a spin with the walker or in the wheelchair. I don't reprimand them for talking about my kid or pretend I don't hear them. Kids are curious and Freyja loves to tell them about herself. I mean, her walker is really cool -- it's pink and shiny and looks like a weird sort of scooter. Her braces are interesting. She herself is fascinating. So why not let them ask? Freyja knows how to answer these questions by herself now. And she has no idea that she's radically different from anyone else because when it comes down to it, she's really not.

Can you tell which one is the atypical kid's?

Freyja started kindergarten!

Freyja started kindergarten last Wednesday.

I don't think I will ever get tired of saying that.

Freyja. Started. KINDERGARTEN. In our local mainstream public school. She's in school with her sister.  She took the bus there with her sister. She is in public school. In the same school as her sister. We are taking it a year at a time, yes. But we are taking it! 

The night before the first day of school, I wrote my girls letters. I read them out loud as they got ready that next morning. As I read them, Johnny made barfing noises in the background because they were so cheesy. All the same, I want to include them here.

Here's Freyja's:

Dear Freyja, 

It's been such a joy to watch you prepare for kindergarten, and here we are the night before your first day. You've worked so hard for this moment and you've defied all the odds to get here. You are in a mainstream public school! You have a small army of people to support you and ensure your success. You are determined and tenacious and you don't know failure. You are the you-est person I have ever met, so self aware and so unwavering in your very Freyja-ness. 

My daring precious peanut, I wish you knew how many people are in your corner and have been since your birth. I wish you knew how many hearts you have touched and how many hands have supported you every step of the way. You are so loved and we are proud beyond words of who you are and all you have accomplished. 

We don't yet know where you will lead us in the future. We don't know what you will need and how you will grow and change. But I do know that tomorrow you will start kindergarten and at the end of the month you will turn six. You will have already accomplished more in your short life so far than many people much older than you. We are so excited to be along for your adventure. I love being your mother with all my heart and soul. And I love you.

Love love love,

And Thora's:

Dear Thora, 

I'm writing to you the day before school starts. You are about to start second grade. Your hair is getting long. You just got your first skateboard, and you already ride it competently. You are an artist. You still have not lost a tooth. You are seven and a half and you are beautiful, smart, creative, brave, kind, silly, and wonderful. You are the center of my world and I love you and am so proud of you.

In second grade you will learn so much. You will read more and do more math. You are a Bay Stater now, and you'll learn more about your adopted hometown and state. You will do more art, more music. We will ride our bikes and you will skateboard with Daddy until it's too cold. Your hair will grow longer if you promise to keep brushing it, and you will grow taller. You might even lose a tooth or two.

You will make more friends. You will work hard and play hard. And I hope you continue to fall in love with life. You are precious to me and to the whole universe. Enjoy school, enjoy life, enjoy being you!

I love you to infinity and beyond.