(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,

Mama

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.

Mama

Start Spreadin' The News... Part One

One morning back in November, Johnny nudged me and said, "You know, your website needs some love. You haven't posted since August." And my thought was, what?! How is it November? And now here we are at the end of January and I have a zillion half written entries, abandoned because they felt trivial or because another big thing came along and sidetracked me. Since August, I have been through some of the toughest days of my life and since August I have also been through some of the best, most delicious, most wonderfully precious days too. So here are some highlights.

Before the end of the first week at Bee's new school, we learned that kindergarten is indeed a transformative year. Last year in her neighborhood nursery school we dropped her off at 9 and picked her up at 1. She had naps and playdates and snacks and juice boxes. She was a baby.

Now our little Bee gets the school bus at 7:20 every morning at a stop over a mile from our apartment and the bus drops her back off at that same spot at 4:20 in the afternoon, meaning we leave the house with her before 7 am and she returns -- on days she doesn't have anything after school -- after 4:30. At five years old, she works longer days than most adults I know. What's more, she has homework every night that involves reading, writing, math, drawing and more. This is so exhausting and she is so tired that she's ready for bed at 6:45. And because I've only barely walked in the door from work by then, that means she's up at 5:30 am doing homework and getting ready for school and I'm up with her so I can spend some time with her. So nowadays our entire family of spooky night owls is in bed before 10. When did we all get so old? 

Bee is tall now, and more slender. She has long hair with a black streak and she wears hoop earrings. Some days, she's very concerned about her appearance but other days she prefers that I pick her clothes for her. She's still into her Twinkle Toes and all things glittery and sparkly. She's into magic: everything from the Rainbow Magic books to Harry Potter. She would wear makeup every day if I let her.

She is reading now -- slowly and rather reluctantly, if I'm honest, because she would much rather be read to -- and writing. She is showing a real talent for drawing and art. The girls are sometimes mean and petty, so she has had to work through a lot of interpersonal issues already. And I am proud of her for holding her own. She learned to ice skate, started riding a big girl bike (20", no training wheels) and my personal favorite, she is becoming marginally less picky an eater. In the fall she swam and was part of a weekly group that explored Central Park; this spring she'll be doing Glee Club and soccer after school. 

But the real change is that she's thinking for herself. In one project, the children wrote their own book and hers was about when she got her cats. For MLK day, her dream was envisioning a world where everyone was vegan and no one hurt animals. For her first research project, she had to select an agent of change. I pushed for Bowie; she chose Henry Bergh (the founder of the ASPCA). Even though they fight a lot, she usually takes good care of her sister. And I am so proud of her. 

Teeny also went back to school, this time in the integrated classroom. This was absolutely the right move for her. Her speech is very clear now and she is imaginative and expressive. She understands what it means that we are vegan and we don't eat animals. She cares for her babies, cooks in her kitchen, loves mermaids and Bubble Guppies. She always wants me to be the baby and her to be the mama. She strokes my hair and tells me to go to sleep in her bed, she makes me sit in a chair that serves as the backseat of the car so she can drive me to Nana's house. Her adaptive ballet class is putting her little troupe on the stage of Lincoln Center in two weeks. She swims weekly and has outside PT where she tumbles and stretches and zips on a zip-line. She has a pretty great life.  

In addition to her PT, OT and speech sessions, she now gets play therapy twice a week. Originally the school didn't want to give this to her but I pushed and they ceded. And I'm so thrilled! Ordinarily play therapy is for children with behavior issues but I argued that Teeny needs it since she has difficulty expressing her emotions. In speech sessions she works so hard on articulation, pronunciation and expressive vocabulary that there is little time for narration. So twice a week she meets with the school psychologist and they work through a whole host of emotions. They often play with dolls and doctor kits and other interactive games to encourage her imagination. When the short sessions draw to a close, the psychologist has to prepare her for ending and transitioning, which is difficult and sad for her because she likes the sessions so much. This is really, really good practice for her.

The truth is that she seems to be going through a phase of getting easily frustrated. At four, it's totally age appropriate for her but it's also that she is mad at her body for not doing what she wants it to, at her mouth for not saying what she wants it to. And her frustration can be intense and hard to shake for all of us. There is a lot of pouting, arm crossing, huffing, even wailing. It would be easy for us to placate her with her iPad, with Laffy Taffy, with other things that make her instantly distracted. But we don't, because life isn't like that. And sometimes, when she struggles to soothe herself, we all suffer along with her. I am grateful for the play therapy because she gets to practice this in a controlled environment and we are learning how to help her through it at home. 

We stopped most of the Botox injections and her legs are getting stronger. She's using the rigidity and spasticity to help her stand, which she can do now with no hands for more than five seconds! We went through a very complicated process to have her approved for a mobility evaluation because with her new strength she needs a more lightweight walker. It took four months to get that appointment, but it's coming in two weeks and I can't wait. We have a wonderful physiatrist and an equally wonderful orthopedist who disagree fundamentally with each other about how to handle her legs, so when, a few months ago, she needed new braces and the ones that were made for her by the orthopedist's orthotist gave her painful sores on the insides of her ankles, we had to have them made again by the physiatrist's orthotist. As a result, she went for weeks without braces, which was terrible for her feet, and when we got them, she had to learn how to use them all over again, wearing them first for an hour a day, then two, then three. 

I have continued to wear her in a baby wrap long after most mamas stop wearing their babies. Because of her spasticity, I have to wear her with her legs closed, like she's riding side-saddle. She puts an arm around me and I put an arm under her legs and wear her like I'm sweeping her over a threshold. And I love every delicious moment. I can whisper with her, stroke her hair, breathe her in, feel her hugging me. But like her sister, Teeny is also getting taller, and she's getting heavy. This is problematic, because I can't carry her anymore. And her walker -- really a gait trainer -- is so heavy and clunky that she cannot use it independently for anything other than a physical therapy session. She can't use it to get herself down the street, or from one classroom to another. It's a big purple cage and it's hard for her to use. She hates it.

We have no choice but to adapt to life with a wheelchair, and none of us wants to. She doesn't want to be independent and I don't want her to have to be. It's a tough place to be, but we have to go through it. She's going to grow into a big kid, and then an adult, and she's going to need this independence in kindergarten and in life. So the lessons continue, for all of us.