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.

Friday, August 18, 2017

The Essence of Freyja

Yesterday I thought of something really clever to describe what life with Freyja is like nowadays, but when I sat down at the keyboard much later in the day, that clever thought had vanished. Man, it was good. But you will just have to trust me on that one because it's gone. Poof! My creative juices haven't been flowing much lately and my memory isn't what it used to be. I have aged a thousand years since you last heard from me and it's been a very long time since I have had the willingness to write a word. I have lost and re-gained twenty pounds. I have gone through early but permanent menopause. I have so much neck and shoulder pain that I can't sleep at night. My hair is greyer and greyer and my face is tired and wrinkled. I don't make time for friends and because I'm so bad at it, they don't make time for me either. And I can't say I blame them. To be the kind of parent I need to be, I am now a lousy friend. 

Life is moving really quickly, and Freyja is growing up fast. I know I won't remember things if I don't write them down, and I worry so much that someday she will not be with us that I want to remember every minute. All the good stuff, and the bad too.

Freyja is almost six. She is about to start kindergarten in our local public elementary school. She is no longer Teeny. When I call her almost anything other than Freyja, she corrects me, saying "No! I'm just Freyja!" She loves her name and says it beautifully now. She used to call herself something like "Vaya" and no one understood her when they asked her name. Now she pauses and says proudly and clear as day: "My name is Frey-ah. I am Frey-ah."  

She does occasionally let me call her peanut now. She's still diminutive and adorable, so I insisted
that she answer to something cutesy at least some of the time. I tried out all kinds of nicknames but she would have none of them. Until peanut. She tolerates it and responds to it and reminds me often that she is a really big peanut because she is a big kid, not a little kid anymore. She is. She's my really big delicious and precious peanut. She is a beloved little sister, a charming student, an impressive patient, and the biggest mystery I've ever encountered.

On the one hand, Freyja experiences growth and progress on a daily basis. In the year since we left New York City, we have seen tremendous improvements. She walks -- and runs! -- with her walker. She can somewhat painstakingly go up and down steps while holding on to the railing with both hands. She asks for help and a spotter when she doesn't feel safe or secure. She tells us when she needs assistance, when she wants to be carried, when she's tired and needs a break, when her braces hurt her legs so much they have to come off. But more often than not, she pushes our hands away. I can do it by myself, she says a hundred times a day. Stop it, Mama. I will do it. Don't help me. Under a furrowed brow and through narrowed eyes she makes a face at me and starts whatever she's doing all over again, this time without my interference. Her speech -- both the way she pronounces words and the way in which she expresses herself -- has improved by leaps and bounds. We have conversations. She can retell stories sometimes. She thinks aloud and shares abstract ideas. "Hmmm. Let me think about it," she will say in response to a question, tapping a finger to her chin. She is opinionated. She has favorites and second favorites. At dinner time with the family, she recounts her rose, thorn and bud -- what she liked best about her day, what the worst part of her day was, and what she's looking forward to about tomorrow. She memorizes song lyrics, tries to take turns "reading" aloud (repeating an entire book after me one sentence at a time) and plays I Spy with only the tiniest bit of assistance from her big sister. She lets me brush her hair and sometimes even put pigtails or barrettes in it. She wants to grow it long so she looks like a princess. She puts on lipstick a hundred times a day. She makes up stories all day long. She is the most social of the four of us, fully extroverted and always interested in playing with others. She pretends, she rationalizes, she supposes and dreams. She is witty, often silly, and can take a joke better than I can. All of this is really, really good stuff.

On the other hand, she cannot escape the damage to her brain. We cannot pretend or hope that her cerebellum will heal itself. PCH2A is a serious and usually fatal diagnosis and it will never ever go away. PCH keeps us hyper-aware that maybe it's not worth fighting about those last three pieces of broccoli or slapping her fingers away from her mouth so she doesn't bite her nails or making her walk when she wants to be carried. We hug her a little tighter and sneak in an extra kiss or two at night because we never quite catch our breath from the everpresent fear that one day she might not wake up. We watch our fellow PCH-families bury their babies one after the next, the number of commemorative dragonfly tattoos among my friends list growing almost daily. They don't see Freyja as one of them, but she is. Our friends and family don't see Freyja as one of them, but she is. I don't want to think of Freyja as one of them, but she is. I can't reconcile this happily if not typically developing child with her terminal diagnosis any better than anyone else can, but it doesn't leave my thoughts for a second. Not a single second.

Our now annual visits to the neurologist are like a skeptic going to a fortune teller who is eerily on point. He looks at her like he's gazing into a crystal ball. For the most part, he has no idea what to make of her because there are so few children like her. The diagnosis itself is incredibly rare. Now imagine a child with PCH2A who strangely doesn't seem to fit this dramatic description. That's even rarer. He has no idea what he's looking at when he looks at her. But somehow he knows exactly what we are going to encounter, what she will be like, what her struggles are and aren't, where we should intervene medically and should not. He is always right. 

He is amazed and delighted by her incredible ability. He always invites students, colleagues, visitors of all kinds to our appointments because he wants everyone to see that she exists. He has presented her at conferences and included her in rounds. He says he will write about her someday because she is such an anomaly. She should not be able to do the things she does. But she can and she does, so he tells us to treat her like a typically developing child to the best of our (and her) abilities. At the same time, he warns us to watch for seizures and other concerns. He knows the cerebellum probably better than anyone else on Earth and is always able to tell us what behavioral issues we will encounter, what learning challenges she will have, what in life in general will be difficult for her, because he knows where each of these skills, proficiencies, talents, etc., live in the cerebellum. "And to think the rest of the world thinks the cerebellum only controls motor function!" he scoffed under his breath last week when we reviewed a litany of behavioral and educational concerns. 

In that conversation, he predicted that she will have three major challenges in school. One, her motor deficiencies will be extremely challenging. This we already know. She needs help with most activities of daily living that the average five or six year old can do independently. She is moving to keyboarding because writing is so difficult for her. She exhausts herself by insisting on walking everywhere; she has a pronounced limp and her legs hurt all the time. She can't keep up with others her age. Two, her brain will not be able to handle multi-tasking at all. He's correct. We already see that she can only focus on one thing at a time. When multiple things are happening around her at a time, she becomes overwhelmed and extremely frustrated and can do none of them. She falls apart easily. She needs quiet and a setting in which to concentrate. And three, language processing. This will be her biggest challenge, he says. We knew that from her neuropsychological evaluation already but didn't really understand what it meant. Basically it means no one knows how well she will learn in school. Or, looking at the combination of all three hurdles, if she will learn in school at all. And on top of that, she has twice now thrown herself into a neurological episode of some kind by tantruming so hard that she can't regulate her movements, her body temperature and even her conscious presence. She was so upset and so physically affected that she completely dissociated. Just flat out disappeared. And when I tried to explain this to people I thought might understand, they didn't believe me. 

So, no pressure. After four years of preschool -- one private, two special ed and one integrated, she is finally starting mainstream kindergarten like we always wanted her to. But the deck is stacked against her. The director of special ed for our school district predicts that not only will she not last there and end up with an out of district placement sooner rather than later, but that the LD schools the neuropsychologist suggested we consider for her down the line will not take her. That she will need a school for the multiply disabled. But, she finally agreed, let's try her out in kindergarten. We will give her a chance. Maybe she will surprise us. Who knows really how she will do. So, yeah. No pressure. 

What I want to know is this: How do I deal with special ed directors who think my child is intellectually disabled when her neurologist and neuropsychologist say she is not? How far do I push for her education when I know she may not make it to high school graduation anyway? How am I supposed to balance raising my child like a neuroypical kiddo and knowing that her life will likely not be long? How do I make monthly deposits in her 529 like I do for Thora and also establish a special needs trust as part of our estate plan just in case she outlives us and can't live independently and has no one to care for her? How do I couple teachable moments with the fuck-its I get when she wants more ice cream or another video? Do I prove a point or do I let her have the ice cream because she might die? How do I decide how much to push her in her therapies, how much to fight for her inclusive education, how much to plan for her future and also ensure that her days right now are good ones? How do I internalize that her disability could be a death sentence and also rejoice that she's not unwell enough to qualify for Make-A-Wish when she wants to go to Disneyworld and be a princess among princesses but we can't afford it because we have to save for her uncertain future? How do I feel gratitude for all the wonderfully supportive friends in social-media-land who pile "love" emojis on her cuteness when five minutes after I posted the latest totes adorbs video, she collapses into a seething, infuriated, hysterical heap over not getting to watch the clip of the Frozen characters doing the Thriller dance on YouTube for the eight hundredth time because I said no because I was just sick of hearing it and needed a break? When I hear the neurologist's voice in my head telling me to just give in because her inability to self-regulate and self-soothe make disciplining not worth it sometimes because the discipline is lost on her and she is completely unable to compromise? That I should raise her like a normal little girl -- whatever that means -- but oh yeah, the cerebellum is where fun stuff like autism, ADHD, OCD, ODD and psychosis all live and she will likely exhibit behaviors of all of the above but not really ever be diagnosed explicitly with any of them so the behaviors will be hard to treat, hard to medicate, hard to manage? And when I see that the doctor is right when she's following me around closing doors and drawers obesssively, unpredictably and randomly exhibiting extreme difficulty with change, transition and disruption, and not understanding the meaning of no some of the time, ending up half catatonic from overreacting to that no when ten minutes later I can say no to the same damn thing and she's fine with it. When my other child leaves me notes and letters on my desk for me to find when she's not watching that tell me how sad and frustrated she is that her sister gets so much more of our attention and that even though I get up at 6 am every morning to go bike riding with her and make every effort to ensure that she feels seen and heard and loved every day, I know deep down she's right, that her sister does get more attention? When I earn a decent salary and benefit from so much white middle class privilege but ask for financial aid because I have to put every cent toward her therapies and adaptive activities in the hope that they will make her healthier, stronger, smarter, more resilient, alive. When the world feels like it's unraveling around us because our president is a racist sexist homophobic transphobic disability-phobic piece of shit and I almost regret having children in the first place because I made the stupid assumption that our nation would vote for leaders who would want to leave the world in better shape than they found it and I feel pathetic for feeling the way I do because so many people have it worse? How can I take all of that into consideration and still treat her like a regular kid? I don't know how, but somehow, this is what we do every single day.

And you know what? We do it, but we can't talk about it. And I think that's why I haven't been writing about it. When we talk about Freyja, we talk about how cute she was today. How she's learned the moves to her latest favorite dance, or the lyrics to her latest favorite song. How she asked for a new book at bedtime instead of that goddam fucking ballet book she makes us read 99.9999999% of the time over and over and over. How many views her video got. How her babysitter took her swimming or how she dressed up like a princess or how she wanted to hug the chickens or how well she ate her dinner or swallowed her medicine or whatever. We don't talk about how much effort goes into balancing her future-no-future. When it comes up, we change the subject, we look away, we pick fights with each other over the overdue library book someone forgot to return. We act like it's easy to be her parents, because that is what you do when it's your child and that is what anyone would do, but it isn't easy. It eats away at our hearts and our savings and our self confidence, our relationship and our energy. It crumbles our trust in the world and that things will work out okay. We alternate being so grateful that this child is in our life and so bitterly angry at everyone else for not understanding what we go through. It makes me weary. And then it becomes easier to say nothing, to write nothing. I'm fine, thanks! Yes, she's so cute, isn't she? She's awesome! Never better. 

Today at the end of the yoga class I went to, the instructor read something from a daily Buddhist reader. Initially I was annoyed that he interrupted my savasana, but then I heard something meaningful. "Anything that becomes rare becomes very dear to us. When things are in abundance, we do not even know their value.... What is will always be. What is not, never was and never will be. The essence is always there. You can never destroy the essence. Then what is it that is destroyed? The form that the essence takes. Only the name and form are destroyed." 

All this uncertainty is a part of Freyja's essence, and Freyja's essence is a part of the world. She is, and she will always be. No matter what happens to her, I know the essence of Freyja. And that can never be destroyed. Maybe that's not a fix, but it's a solution. It's the answer that I needed, at least for today's questions. She is, so I don't have to worry about whether someday she will not be. She's here now, and that means she will always be. The essence is always there.


Wednesday, January 4, 2017

Teeny Rae

Small but important update: 

We don't call Teeny Teeny anymore because she's now five and not that teeny, and also, she doesn't like it.

Hey, Teeny girl! 

I'm not Teeny! I'm a girl. I'm Rae! 

Hey, girlypants!

I'm not girlypants. I'm a girl! I'm Rae!

Hey, peanut! 

I'm not -- 

You get it. She likes being called her name. The end. So, Rae it is.

City Mouse, Country Mouse

We did it! After several years of deliberating, debating, stressing, worrying, researching and discussion followed by a sudden decision and then six months of very intense planning, we managed an out-of-state move. It's no small feat to uproot an entire family based on the hunch that you might be making things very, very good for one person in your family and man does it feel good to realize that the move worked for all four of you. 

While I was working on a list of the most noticeable things that have changed in my life in the past six months (and three days) since we moved, I dug a few paragraphs out of a draft email I'd written to myself a couple years ago when we were trying to figure out whether we wanted to move at all. At the time, I'd thought maybe I'd turn it into a blog but ultimately we got stuck in indecision for several years. Then we made up our minds very quickly It was a very long and painful process that I am so glad is behind us, and it was interesting enough to reread my words from back then (because so much of it has been realized) that I thought I'd post them here.


Since around the time Bee was an infant, which is also right around the time Johnny and I bought an apartment in the Harlem section of Manhattan, we have been talking about moving out of the city.

I am a native of a (back then) pretty tough part of Queens. I grew up in the city and was obsessed with spending every minute I could in Manhattan. I started commuting by subway to the Upper East Side for school by the time I was 11; transferring off the 7 train at Queensboro Plaza to catch the R train (before it became the N train) going over the 59th Street bridge was a thrill every single day until I graduated high school. As a teenager, I would have sold my soul to live in New York, NY. My high school boyfriend and I spent hours and hours riding the subway and getting off at a random station, walking around and riding all the way back. Because I lived in Queens, I got made fun of by my more sophisticated friends from Greenwich Village and the Upper West Side. They teased me, asking repeatedly if there were cows where I was from. I didn't think it was funny. Instead I vowed to become sophisticated like them: dye my hair black, go to CBGB at night, learn to smoke cigarettes and find a way to go to cast parties hosted by kids whose parents were away in the Hamptons, sketchy clubs that didn't check the IDs of clearly underage girls and, the ultimate at the time, the Rocky Horror Picture Show.

By the time I was seventeen I had left home and was living on East 25th Street. For me, nothing was more exciting than hanging out downtown, especially the Lower East Side and anywhere there was a club night.  During the day I loved waiting on line at the bagel store on early weekend mornings, wandering around the busy streets, walking and walking for miles; meeting friends for dinner or drinks at a restaurant, bar or club as night fell. I loved pretending I was a tourist in my own city when friends visited and even more than that I loved walking down any street any time of night or day like I owned it. Unsurprisingly, then, 4 am on any given night might find me in the meat packing district (which was a very scary place back then), Chelsea, the East Village.

And now I want to be a hippie. To be clear, I don't mean that I want to start wearing long, flowy skirts and patchouli oil. I don't even mean that I want to be a goth version of hippie. Ren Faires and poet shirts are not my thing. I might mean that I want to grow my armpit hair and stop dyeing my hair black -- someday. I am very aware that I get sucked into trends and that I feel pressure to conform in some ways and when I'm outside of a major metropolitan area that all goes away. I don't quite mean that I want to wear any old thing or stop all personal grooming, but I do mean that while most of me knows I don't need that Lululemon outfit to go running, I sometimes buy it anyway. I want to remove myself from the pressure I often feel to spend crazy amounts of money on myself on crap I definitely do not need or could get for less. I definitely mean that I want to stop throwing money in the garbage. Periodically there are articles that make their way around social media that talk about how New York City is the most expensive place to live in the whole country. We are a single income family whose single-income-r works in a non-profit, so it seems outright stupid of us to spend another second here. I want to focus more on our impact on the environment. I want to compost, grow some of my own food, recycle more. Have (rescue) chickens! I want to have a lawn or a yard (or both) and a tree to sit under. A hammock. A little more space. Shop at and work in a co-op. Send my kids to public school. Walk, run and bike in greenery. Hike on my own property. Get involved in the town governance. Not be able to hear neighbors, especially while sitting in our own living room. Not get whistled at, harassed, talked to and otherwise bothered with every single step I take. I want a deck so we can sit outside with dinner, a drink or a book. I want to be able to open windows and have cross ventilation. I want to not have to choose between Teeny's walker and Bee's scooter because our 750-square-foot apartment doesn't have room for both. I want more than one bathroom for the four of us and our two cats. I want an attached garage so we don't have to bundle the kids to walk ten feet.

I know that many of these things can happen right here in the city. No one is twisting my arm to overspend on clothing. I shop at some thrift stores already. I could compost using a worm bin; I know several people who do. There are community gardens we could have a plot in. There are two food co-ops (far from us, but they're there). Of course we re-use and recycle, but frequently I find myself forgetting my travel mug and then getting a giant plastic cup of iced coffee and just tossing it when it's done instead of bringing it home to recycle it properly. It's easy to get complacent here. 

We were recently in Vermont for a long and beautiful weekend. It's a long drive but it's totally worth it. And the 300 miles each way gave Johnny and me lots of opportunity to talk about this, our favorite topic. It's been a topic for a long time because while the list of things I want and don't want keeps growing, there are no easy answers. We are as deadlocked on this as we were when we discussed it four years ago. Back then we said we probably had about ten years in our apartment before we would truly outgrow it and the girls would need their own rooms. We have tried to accelerate the process time and time again, but something always gets in our way and puts us back on that ten year plan.

There are four big things that are keeping us here:

1) Work. My job is based in New York. While I'm told that I could eventually work remotely part of the time, I do need to be in the city or near enough to the city to get there at least some of the time. This would not be an issue if we could afford to buy a second home and I used our current apartment as a pied-a-terre a couple nights a week, but I don't think we can afford that. I am too old for couch surfing and I can't think of anyone who would want me to bunk with them that often. I love my job and I don't want to leave it, so it plays a very big role in this decision making process.

2) Education. Teeny's needs are currently best met here in the city. As readers of this blog know, we just committed to two years at a fantastic preschool that is equipped to do all that we need it to and more. She is in good hands there. The school is in Manhattan, and more importantly if we left our school district we would lose our CPSE administrator, and we don't want to do that. So that's two years at least before we could make any major changes and even then it's not clear to me that her needs will be pet in some small town's public education system. Also, now that we have Teeny in a school for two years, our attention turns to Bee, who is about to start her last year of preschool herself. This year we will go through the process of getting her tested for G&T and the specialized public schools like Hunter - where I went - and Anderson, and of course we will go through the very hair-raisingly competitive application process for private schools. Presumably we will either find ourselves in an amazing public school we can't afford to leave or in an amazing private school whose generous (and necessary) financial aid package makes it difficult for us to pass up, and she'll be set for at least eight more years. During which time it will be Teeny's turn again, at which point we will have to decide based on her abilities then whether she needs to stay in the city or if she will do well elsewhere.
3) Fear. We are both New York City natives (have I said that enough?) who always thought we would live here forever. Johnny and I have lived here or in other big American or European cities all our lives, and we are aware that moving away means loss of convenience, loss of easy access to restaurants, movies, theater, museums, nightlife. We rarely if ever avail ourselves of any of this and when we do it's with a great deal of planning to arrange childcare, finances, other people's schedules, etc., so we don't believe this would really cramp our style, but we are aware that it will be a really big change regardless.

4) More fear. While we are co-op owners, we have never owned our own house. We pay an exorbitant amount of money in monthly maintenance fees but in exchange we have a super, a porter, three doormen, a co-op board and a building management company all there to address our needs and take care of issues (usually) in a timely way. To say we are not handy is an understatement. We can barely hang a painting ourselves. Luckily for us we have family members who are homeowners and other family members who are not only handy but have made lifelong careers from working with their hands, so we can lean on them to ask questions. But last year we backed out of a purchase because I got cold feet after the home inspection. I felt like I couldn't handle the financial and emotional burden of having to learn how to assess repairs, find contractors and set aside the money to replace, say, a boiler or a roof at a moment's notice. 

There are four things we think we know we do/don't want that will influence our decision:
1) Town. We don't want suburbs. Originally I thought we did. At first, it made sense to buy a house in a bedroom community of New York City. We ruled Long Island and New Jersey out just because they are Long Island and New Jersey (with loving apologies to my LI and NJ friends and family) and looked in Westchester. Ultimately we decided against that too, leaning more in favor of something more small-town-ish and less of an extension of New York City.  The suburbs we visited felt very white, very conformist and very upper class. I don't claim to know everything about what's out there; I know we are making generalizations. Still after 40+ years of being the weird kid even here, I want to be somewhere I will not feel judged looking the way I do, with my tattoos and somewhat unconventional style and so on. I want to be comfortable being vegan (and be able to get something to eat when I'm in town if I get hungry). We want there to be at least somewhat diverse population with an LGBTQ community and unconventional families familiar with special needs, stay-at-home dads, adoption and the like. So, progressive. A focus on the arts and the earth. Small-ish population but not too small as we think rural would be too different and too isolating for us. And near-ish to a city like New York or Boston or even Providence, if possible.

2) Northeast. Nearly all of our family is in the northeast so we aren't prepared to move out of this general area. We want to be able to get back on short notice if it's ever necessary and when it's not we still want to be within a day's drive of grandparents, great-aunts and -uncles, cousins and family friends. And we love New England. Our last five or more vacations have been in Massachusetts and we keep finding ourselves there for weekends, family visits and so on. We love the Cape, we love the Boston area and we love Western Mass. We even spent a week in Central Mass last winter just because it was close to everything else! I grew up spending a lot of time in the Berkshires and love it there so so so much, and as a student and young professional I lived in the Cambridge area for six years, which I also love. We also feel totally at home in Vermont and have been there quite a few times, but think Massachusetts (or possibly southern Vermont) might be a better choice if only because it's closer to New York City.
3) aaaaand that's as far as I got.

But here we are, six months and three days into living in the country. Everyone keeps saying "What a big change!" when I tell them we moved from New York City. In some ways it feels that way and in some ways it doesn't. In some ways it's like we've always been here. And it's all good.

Our Miss Teeny is now five. Her birthday worried me because it was just a few weeks after the start of school and she didn't know anyone, but it was better than I ever could have hoped. We chose not to have a big party for a bunch of kids we didn't know. Instead we just had a big playdate. We invited her new pals and their families who have embraced us like old friends. Everyone came. We did an art project, ate cake, and had a little parade up and down our street with her in her new little electric car. I imagined her like Milo from The Phantom Tollbooth, reading the road signs, depositing her coins into the cup, squinting at a map and embarking on a wild and fantastic adventure. And she's really done exactly that. 

Milo had no idea what he would find in Dictionopolis. He hadn't even really intended to go there. He just closed his eyes, poked a finger at his map and then went wherever it told him. While our move involved a ton of research, the truth was that we had little better sense than Milo did of what we would find when we moved out of New York City.

Six months in, so far, so good.  A friend of mine with a special needs child who two years before us also relocated to another state in pursuit of many of the same things we wanted reached out to me and said hey, doesn't it feel good? You uprooted the lives of four people in the hopes that you would be making a better life for your daughter. You did it! And doesn't that feel good? Yep. It sure does.

In some ways it feels like we have always been here. Apart from a few friends, I don't miss New York City at all. I love the quiet. The clean air. The trees. The fall foliage! The wintery landscape. The snow and ice. I love sitting on the deck or hanging out with our chickens. I love putting work into the house and I even love daydreaming about putting work into the house. Even though right now we can't afford the big projects we know we want someday, even the little ones are fun. 

The girls are settled. It's almost like they've always been here. Teeny's first IEP meeting came and went and I am very pleased with her services. She is already adored by her new school as much as she was by her old school. She has PT, aquatherapy, music, hippotherapy, adaptive dance and OT all outside of school and we are working on getting her additional speech as well. She's a busy kid. Bee loves school. She takes music and art outside of school, and once a week she and the 12 year old boy from next door work on Lego projects or play the Pok√©mon card game or do drawings together. She gets me up every morning that I am home so we can walk or bike or walk or read or just talk before everyone else gets up. And every Saturday morning she comes with me into Boston to Teeny's adaptive dance class. We drop her off, walk to the Starbucks a few blocks away, she drinks as much as she can of a decadent tall soy decaf mochaccino with only half the sweetener and she reads me a chapter of her book. She, too, is a busy kid. She has more or less stopped mentioning her friends from her old school (except, "everyone eats meat here. How come there are no vegetarians or vegans like there were in New York?" and instead asks for play dates with her new schoolmates.

Sunday night is movie night for us and that means we gather in the basement with hoodies and blankets and beanbag chairs and frozen vegan pizzas and we watch something as a family. We instituted this at the start of the school year and so far we've watched a variety of movies including Mary Poppins, the Addams Family, and every single movie or short movie featuring the Minions.

Johnny is settled. He has his routines, which are kicked up into high gear when I am on the road. He has little time to himself during the day because there are always errands to be run, chicken shit to clean, wood to chop, service providers to call or let into the house, kids to run to classes and therapies. He loves the local library's enormous collection of books and movies. His new favorite person is the guy who runs the local beer and wine shop. This guy calls him when one of his favorite IPAs are in, and one of his recent runs to grab a four-pack of 90 minute Dogfish or Ballast Point Sculpin or some other beer with some incredibly ironic name and label (my favorite is Raging Bitch), he also worked up the courage to go into the Italian restaurant next door and ask if they would make vegan pizzas if we provided the vegan cheese. And they said yes! Tiny victory to you perhaps, but this is huge for us. My spouse rocks. And me? I just wish I were home more. 

Six months ago, whenever I was in the airport I would Face Time Teeny and she'd ask me to flip the camera around so she could see all the people. She would ask me to walk over to a window so she could watch the planes pull away from their gates and slowly make their ways to the runway. She would ask to see the people again, the moving walkways, the shops, the signs, the tarmac. She would ask me to show her my seat, the windows, the lights. She was fascinated. 

Today as I boarded my flight home, I Face Timed her. She was deep into dramatic play mode, busy at her kitchen set, making imaginary mac and cheese. Johnny propped the phone up on her ty kitchen counter. Hi Mama! she said. Are you on the plane yet? No baby, I'm-- and she held up a hand. Wait, she said. I have a call in five minutes. I have to go. She turned away from me and picked up a pretend phone. Hello?! Oh yes. She pretended to listen. Yes. Okay. She turned back to me. I can't. I have to go. But wait, baby girl, I protested. Can you tell her you'll call her back soon? No, she shook her head gravely. I can't. What else could I do? Okay, baby girl, I said. I love you. Goodnight! I'll see you in the morning. 

How depressing. 

Earlier today I was on the phone with a friend who asked me about how my family was adjusting. Great! I said brightly. I told her how my underlying goal is to minimize the impact of my travel on my kids. How I work hard to plan their activities for the week before I leave, how Johnny and I review who has to be where when. How Bee and I sometimes Face Time when she gets up early and she reads a chapter to me then, flipping the camera around to show me the pictures, and of course the words she stumbles on. I told her how lucky they are to have a parent who is always home and to have friends and neighbors and family in their lives consistently even when I am not. How I have been trying hard to be home on the weekends so I can take both girls on our Saturday morning outings while Johnny sleeps in, how I've never yet missed a movie night. 

And yet, there it is. No, I have a call. I have to go to work. I'm sorry, I can't right now. I'm leaving for the airport. I'm off to New York. How many times have they heard that? 

It weighs on me. But it is what it is. This is what I signed up for. It's what I knew I was getting into. I love my job and I love my family and I love being home and I love being on the road and I love being with my spouse and my girls and I love being with my colleagues and I love doing all the things I do. And I get to do them imperfectly and wonderfully. Adjusting is a long process and we are still at it. It's all positive and every day we say over and over how grateful we are that we moved, and yet it's still challenging at times. 

Some of the biggest changes for us are the obvious ones, while others have been things that might seem small to someone else. I've been making some notes here and there that I've cobbled together in the list below:

1) Cost

I was afraid that moving would be too expensive, that on our one-person income we could never afford a house in a town we loved in a school district we felt could serve both our children, with enough space for the four of us and with enough of our nice-to-haves. But you know what? In NYC we owned 750 square feet of space. For that we paid a monthly mortgage and since it was a co-op we also paid maintenance. We paid for our parking space in an indoor garage because a) parking in New York City is impossible even with a handicapped parking permit and b) with a kid who can't walk, you just can't park five blocks away and carry her plus groceries plus whatever and c) we wanted our car to not be stolen. We paid a fortune to insure that car even though it was garaged indoors and not used for commuting. We also had to pay for a storage space since nothing fit in our apartment. Which was stupid because if you put a bunch of stuff in storage you forget it's there so you may as well have thrown it away because you end up buying another one or saying "we have one that's in storage, we can go get it," and looking at each other and groaning and then not getting it and then what's the point of having that bike or that easel or that box of awesome cookbooks or whatever. Then we bought a house. And now, we pay for the house. And that's it. We park the cars in the driveway and we store stuff in the closets and the basement and the cabinets and the shed and the wherever. And the cost to insure two cars is less than what we paid in NYC to insure one.

1) Outside

Our apartment in New York was so small that we had a rule that we HAD to leave at least once every single day. It wasn't even that we needed the air or the exercise, although of course we did. It was that the apartment was so small that by the time we cleared the breakfast table we were already all on each other's nerves, so in order not to want to kill one another, we had to invent things to do outside. But getting outside with a family is such a production in New York City. Everyone has to get dressed and ready to go out, even if it's just to the mailbox, because you can't just go outside and leave a child inside the apartment alone.  And since you all have to go, you may as well make it worthwhile, so you pack as though you might go to the moon. A bag full of wipes, toys, a mama book just in case I get to read, a kid book just in case they want to read, two phones, water, coffee, snacks, a stroller, blanket, hoodies, diapers, change of clothes, whatever. My bag is so heavy that I can barely carry it, and that is before wearing or preparing to carry the child who cannot walk independently when she invariably tires from using her walker. And then there's what a friend of mine calls the New York City kid tax: we have to have a destination, which invariably costs money. Even if it's "oh let's head over to Children's Museum" or the less inspired "We can always grab coffee," or "Let's go pick out a book for the girls at Barnes & Noble," between admission, food, shopping, coffee, whatever, it always turns into a $100+ day long excursion. Always. 

Here, we walk out the door. The front door or any of our four deck doors. The end. Sometimes the kids are not even dressed and sometimes we forget to put on shoes. Bee can open the door herself and the girls can be outside, hanging out with the chickens without us. She is now the one who runs out to the mailbox. Johnny can grab something from the car or the shed without having to suit up the entire family (not to mention having to tip the garage attendant). Also, when they are in bed, we can be outside on the deck or the lawn looking up at the stars (and there are thousands! None of your puny handful of stars that struggle to peek through New York City skyscraper light pollution). Some citronella candles for the summer mosquitoes, a grown up beverage or two, and a hoodie; it's as good as a date night.

The down side: the cats want to get outside too. Ours are wimpy city indoor cats who think they are badass but aren't. They are completely entranced by the 24-hour cat TV playing right on the other side of the screen doors. Our chickens! Chipmunks! Birds! Bunnies! (And, uh, fox! Coyotes? Who knows what lives in those trees behind our house!) They are always on high alert, just waiting for the moment one of us fails to close a door all the way. It doesn't help that they refuse to wear collars.

2) Fashion

I spent a fortune on clothes in New York. Work clothes. Going out clothes. Workout clothes. And so many shoes that I never wore because they hurt my feet. So many.

Everything here is way more casual. Nice-casual, of course, but still casual. And now that I work from home some of the time, I live in comfy cotton and I have enough work clothing to last me for business trips to New York, LA and wherever else for the rest of my life and for ten more lives. I may never need to shop again as long as I don't succumb to the challenges of working from home (my fully stocked kitchen is ten feet away from my office) and the challenges of traveling 50% or more of the time (restaurants 3x per day) and need a new wardrobe because I've gained 500 pounds. 

The down side: my spouse actually likes me in my work clothes. Sorry sweetie! Shorts or jeans and a nice t-shirt or are way more comfortable. I feel sad when I take off my Fit Flops (in summer) or my Sorels (in every other season so far) and have to put on real shoes. As it's gotten colder I am wearing my work boots, jeans and a quilted vest. The all-black version of the LL Bean catalog. Oh well. At least I still shower every day. :-)

3) Appliances and services

In New York we had the luxury of having a washer dryer in our apartment, but they were small and the dryer was ventless. Ventless dryers suck no matter how much you spend (and they are pricey!) and it takes hours for a load of clothing to dry. Here the appliances are bigger and cheaper and way more efficient. In New York the apartment was so small and the air was so bad that we ran the air conditioners (all three of them) at full blast anytime the temperature crept above 70. Here we have high ceilings with ceiling fans and lots of cross ventilation and we don't need the AC at all except on very hot days when the temperature was well into the 90s. In the winter, we use the heat in the early mornings and then in the late evenings but during the day and while we're sleeping we find we don't need it. For regular mail we don't have to find a mailbox or go to the post office, we just stick it in our mailbox and put up the little red flag, a service I find adorably quaint.

The down side: In New York we paid so much per month in maintenance that we almost never had to pay for anything or worry about anything at all for general apartment upkeep. We separated trash from recyclables but it all went into the same trash room in the building and it went whenever we wanted. I never saw a bug in the apartment but we could sign up for exterminator services that were covered by the building. Mail and packages were received by the doorman. Here we have to pay for trash collection services *and* we have to pay per trash can or per bag that is collected. We have to have our property treated for ticks and mosquitoes. We have to worry about landscaping and we have to manage all our own repairs. Part of the reason we even noticed that we could live so easily without AC and heat around the clock is that I panicked thinking about the cost of heating and cooling an entire house. We pay for electric and gas, and here we also pay for water and for the cleaning and maintenance of the septic system. We have a shed for tools and appliances we will have to learn how to use (like a lawnmower!). Johnny got himself an ax and a hatchet for the wood we needed for the two wood burning stoves and we got a hell of a lesson when the first cord of wood we bought was dumped in a big messy pile on our lawn and he had to stack it himself. It took him days. 

4) Customer service

In New York, businesses like the bank, the post office and the supermarket are always overcrowded. The lines are long and people are cranky and impatient and they are staffed by people who don't want to be there. I used to say not even half-kidding that the post office near my apartment should be the tenth circle of Hell from Dante's Inferno. Here, running errands has been nothing short of a delight. People are polite and friendly and helpful. And all establishments make you bring your own bags or give you paper for a ten cent fee. 

Goodbye to exchanges like this:

Me: I have a bag
Employee (ignoring me and bagging my stuff): ...
Me: I have a bag
Employee: Taking my stuff out of their flimsy double or triple plastic bags and then throwing them away even though I didn't use them (!)
Me: Grrrrr.

And hello to:

Employee: Hi there! How are you today? I haven't seen you in a while. How can I help you? 
Me: I'd like this and this please. And I have my own bag. 
Employee: Sure thing! Here you go, have a wonderful day! Hope to see you again soon!

The down side: You have to drive everywhere and think about where parking is. 

5) Space

Our house is more than three times the size of our old apartment and we now have TWO bathrooms and are thinking about putting in a third. This is so exciting I can't even tell you. That two of us can pee at the same time now is earth shattering. It's amazing to have space! In New York every single inch was filled and we worked so hard to keep things organized that half the time we didn't even bother to take out a toy or a game or a project just because it would make a mess and it seemed too difficult to deal with. It seemed easier to just throw stuff out than try to find a place to put it. Here we have a table that we have designated just for jigsaw puzzles, which we love but required too much effort in New York because they took up prime real estate on our dining room table that also served as the girls' home base for homework and project and my home office and if they stayed out unfinished, the cats or the kids invariably ended up losing pieces and they'd end up in the trash. 

The (not very) down side: I sometimes have house envy. Having moved to a town where the houses are mostly bigger and newer and fancier than the one we just moved into, part of me is already thinking this upgrade isn't good enough. We have sunk every penny into getting here -- the renovations we would like to do that the house really needs are going to have to wait. So my eyes move silently over the other houses in our neighborhood. They have garages! This one is having new windows put in, that one has a mother-in-law apartment at the end of their lawn, that one is the size of a cruise ship. Wow, look at how beautiful that one is! I look at the current listings to torture myself with what's coming on the market now. Other people have three bathrooms! Other people have guest rooms! Other people have family rooms and living rooms. Other people have this or that. Look at how this one redid their kitchen, look at how big that one's master suite is. Then I remember what we came from and remember how wonderful all this new space is to my kids and how if our house was that big we would just fill it with crap and then I would have to clean it.

6) Education and related services

This is ultimately why we moved out of NYC and why we picked this town in particular. Bee was going to a wonderful but very expensive private school and the Herculean effort involved in applying for financial aid available was more than I felt I could sustain for the next thirteen years of her education, especially when coupled with everything else that involved getting her there (like leaving the house at 6:45 am to get her to the bus stop, or taking her on the train at 7:45 instead because 6:45 was just too cruel, like paying extra money for after school activities that all the kids did but that made her day 9 - 10 hours long excluding her commute and having to leave work early to pick her up ANYWAY, like worrying about what to do with her over the summer because summer camp in New York City costs around a thousand dollars a week). Then the other kid. Even if it were easy to navigate the special needs system, even if the zone schools were not terrible, even if we could afford the exorbitant prices for all the ancillary services that help children like Teeny, just getting her to and from everything was killing us. Even with one stay at home parent we could not get her everywhere she needed to be -- therapies, doctors, specialists, etc., and still manage Bee's schedule and mine. J spent his life in the car as many parents do but that was just for her and in the last year of schooling our kids went on three play dates. Three. That's all we could manage.

The down side:
I haven't found one yet. Teeny's services in school are somewhat reduced, but MassHealth, the state Medicaid program, covers additional services that her New York State Medicaid never did. There just aren't enough hours in the day to fit all the services that are available to her. It took us four years to amass her team and her services in New York City. In four months, we got her involved in everything she had going on in NYC and more. It's amazing. Teeny is happy. Bee is happy. They are making friends and they are growing and changing and flourishing. If nothing else in the whole world was good about this move, the schools and the services made it totally worth it a million time over and over and over.

And there's more to discover every day.