Teeny Tiny Communique

When Teeny first started nursery school, she talked like a cave-baby. Then speech therapy started and we started to see dramatic improvements. Nowadays Teeny tests in the average range for speech, which amazes me because she is hardly articulate and she struggles with pronunciation and clarity. Most of all, she struggles to express her feelings. She doesn't narrate stories, dreams, hopes. She doesn't tell me about her day. All of this depresses me and makes me feel a real lack of hope, but then I see her with her friends in school or on a playdate and she holds her own. When I'm with her I am sometimes struck that I am having a conversation with her, which is something I wasn't sure I'd ever do. 

At four and a half, Teeny is very polite most of the time, saying please and thank you and demonstrating genuine concern when others are upset or sick or hurt. Like the other day when she said sweetly, "Are you okay, Aimee?" and I almost choked on my tea. Of course, she is also very stubborn and even bratty sometimes, like most four-year-olds. But this coupled with the inability to adequately express what's going on behind the pout, the crossed arms, the stuck out lower lip or the furrowed brow can be infuriating. Not just infuriating for me, but for her, too. She can be manipulative like any child her age but she has a striking inability to self-soothe at unpredictable times, which means that she can shrug off one "no," but another can send her into a tailspin of hysteria that lasts half the day. Again, very frustrating for all of us. When she was three, she learned to say "I don't want to," and now that she's four, she's gotten better at expressing what it is that she doesn't want to do, but not quite correctly. This makes me laugh sometimes, because it's so damn cute:

• I don't want to medicine. 
• I don't want to underwear. 
• I don't want to bathtub.

A lot of her obstinacy revolves around food, which often makes me see red. She can go for multiple meals with barely eating a single bite, so I get panicked that she will starve. I work myself into a tizzy making what she says she wants to eat, and then:

I don't want to toast. It's too hot. I don't want to peanut butter and jelly. I don't like it. Nooooo. My belly is full. My mouth is zippered up. I'm done. I'm finished!

She will tell me she "doesn't like" her favorite foods. She will complain of thirst ("Can I have some water please? I promise I won't spill it. Oops. I spilled it just a little bit. I'm sorry, Mama.") but refuse to drink a drop if her water arrives in the wrong cup. She will ask for a specific food, which I prepare in the hopes that she will eat a full meal only to have her turn away from the first forkful of whatever she insisted on having so that I push pasta with red sauce, peanut butter and jelly, grilled cheese or some other sticky, disgusting thing into her hair or her ear. In an attempt to block a spoonful of cereal with soy milk or oatmeal with maple syrup from reaching her mouth, she will send it flying across the room or into my lap. She will sometimes chew a mouthful for five or six long and aggravating minutes, pointing to her mouth and shaking her head when I try to give her another mouthful. Other times, she will press her lips together and refuse a single bite, and then about ninety-five percent of the time if I try again ten minutes later, she opens her mouth happily and eats the whole thing like there was never an issue in the first place. 

She keeps a sharp eye on her sister, which is both wonderful and terrible. What Bee uses skillfully can often be challenging for Teeny's fine motor skills, so I cringe when I hear things like:

• I want to red lipstick!
• Can I do Sharpies? Only on the paper, I promise, Mama.
• I want to ice skates. 

On Saturday mornings they wake up at dawn, so we sometimes bribe them with iPads so we can sleep another hour or so. This is often a total tease for one of us (usually me), because of this: 

Can you find Bubble Guppies on my iPad? (Five minutes later) Ooops, I dropped my iPad. Can you get it please? (Five minutes after that) I don't want to this part. Can you help? Mama? Mamaaaa? Maaaaaamaaaaaa. I don't want to this part. Can you fix it? Maaaaaaaammmmaaaaaaaa.

When they were babies, our girls slept with us, but they have both been sleeping in their own beds for years. Unless they are sick. When either of my kids is sick, I bring her into bed with me so I can listen to how she breathes, get her quickly into the bathroom if need be, take her temperature, give her medicine, etc. Of course the first day she's well enough to go back to her own bed, there's always a protest. Bee will cough weakly and say, see? I'm still sick, Mama. This tugs at my heartstrings a little but I don't fall for it. This past week, Teeny and I have both been really sick and she spent two nights in bed with me, coughing and snotting in my face and in my hair and scooting her feverish little body into mine. So on the third night, I was not at all surprised to hear this:

Can I sleep in your bed? Well, but I'm sick. I'm still siiiick! Mammaaaaa I don't want to own bed.

And since she was well enough to sleep in her own bed, she certainly assumes she would be well enough not to need cough medicine. So this recent little monologue made me laugh:

I don't want to medicine. But I need medicine to feel better. Can I have some cold water in a mama cup? No, in my Bubble Guppies cup. With my purple straw. Because purple is my favorite color! (After getting her cup) See? I feel better!

She knows she has to wear her braces most of the time, she knows she has to hold on with both hands when trying to walk, she knows she can't watch her iPad on school days, and yet she fights us on all of these and more nearly every day. She knows how to blow her nose but won't do it, much preferring to ask me to come wipe her nose every two seconds, like when I'm driving and it's really convenient. She loves to flush the toilet but doesn't get why we want her to close the lid and then flush instead of the other way around. Manipulate, manipulate, manipulate.

When I try to be manipulative back, she outsmarts me. Like the other day when it was something like seven degrees out and I was trying to convince her to wear a hat to the school bus and she wasn't having it. Teeny, want to see your cute hats? Can I show you the cutest one? I asked. She narrowed her eyes at me. I want to see a hat but I don't want to wear it.

And today, when she decided she had to pee the second she was buckled into her car seat and we were ready to roll, she surprised me again. I was exasperated, we were running late. I chided her: "Why didn't you tell me you had to pee when we were still at home?" 

Because, she said, you didn't go in potty with me and then we leaved.

She was right. I had forgotten to sit her on the potty just to try, the way I usually do in the morning. In fact, she even brushed her teeth sitting at the dining room table this morning because I was juggling so much. Outsmarted again. 

The good news is that she is working through a lot of her difficulties in play therapy, which is basically counseling for the pre-verbal set. She works through a lot of issues around self-soothing, transitions and her growing frustration about what her body will and won't do with her school psychologist. They use dolls mostly, but also play games too, and they work through a lot of feelings. Nowadays anyone in our house can expect to hear Teeny say "You be mama. I be baby" a dozen times a day. She likes to cook in her play kitchen, pack her backpack full and pretend she's traveling, drive her dolls to Nana's house, stick me in her bed so she can tuck me in, act out mama-and-baby scenarios with her mermaids in the bathtub, and so on.

To entertain myself, I compiled a list of other things that have come out of her mouth in the past couple of weeks. I wanted to remind myself that she is speaking in mostly complete and somewhat sophisticated sentences, that she is clearly watching her adult and peer models and copying words from them, that she understands synonyms and antonyms and has multiple ways to say the same thing, that she is expressing abstract thought and not just concrete needs and best of all, that she has a sense of humor. I was pretty impressed with what I collected. For example:

• What Dada and Bee doin'? Let's go check it out!
• It's broken, Mama. It's not working.
• Look, my booty's hanging out of my pants!
• Ummmm I don't think so.
• Give me your phone. I want to see pictures of Teeny.
• Hey! I'm not talkin' to you!
• Maybe later. Leave me alone. I'm busy!
• You can't find it? Aww. That sucks.
• Let me think about it.
• Mama, I have to pee. Really really now!
• Can you give my mermaid ponytails please? Thank you!! (Two seconds later) Can you take out her ponytails now?
• What the fuck?
• It's morning time and I'm awake! I don't want to sleep anymore. Can I have my iPad?
• Can I stand up on the chair? (And then, after being told 100000 times that it's not safe): It's totally safe, Mama. 
• Are we going in the car? Let's take the train! I like the 3 train, not the 2 train. But the train is loud. So let's take the bus. No. I want train. I like the lights.
• Wait! I'm not strapped into my wheelchair! 

And so on.

Best of all, I love that she has come to depend on certain rituals. When I leave for work in the morning she crawls to the door and watches as I put my coat on. "Wait!" she cries when I pick up my bag. She holds out her arms to me. "Kiss and hug!" and then as I walk out, "Another hug! And kiss too." I love this and could go back ten times for more kisses and hugs. Every night when we tuck her in, I whisper in her ear, telling her about all the things she has going on the next day. She loves this part of bedtime and if I forget, she will call me back and ask "What we doin' tomorrow? Do I have school tomorrow? And then swim class? No? Do I have ballet? And then, what? And after that, what?" And then I hug her and kiss her and she hugs me and kisses me and as I leave, she calls out, "Goodnight! See you in the morning! Sleep well. Have sweet dreams!"

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.