Thursday, February 18, 2016

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!"

Thursday, January 28, 2016

Start Spreadin' The News... Part Three

For Bee, the cutthroat NYC kindergarten process, which I wrote about extensively here and here, took seven months and aged me 20 years. Seven months of research, open houses, interviews, playdates, IQ tests, applications, essays, financial aid forms, check writing, some groveling and definitely too much wine drinking, and Bee was finally accepted to a school we felt we could love and could love her. She was in and they came through with a generous-for-a-private-school tuition assistance package that we felt, with some nips here and tucks there, we could make work. 

This year, two months into the process, I had a meltdown. In short, I not only refused to participate, I made the conscious decision to flee.

Teeny is sixteen months younger than Bee but in New York City they would be only one grade apart. Because her birthday is in the fall, the Department of Education wants to push Teeny into kindergarten at the age of four, not five. New York City's DOE follows a calendar year, so all kids turning five on or before December 31 of that year must be enrolled in kindergarten. So in addition to being one of the smallest kids in her class physically -- whatever class that might end up being -- she would also be one of the youngest kids. Every time Bee went to an interview or a playdate at a prospective school, I tried to imagine Teeny going through the same thing and I just couldn't. There's no way she'd be ready. 

If the journey to kindergarten is difficult for the average five-year-old New Yorker, imagine what it's like for a kid with special needs. Now take that and imagine what it's like for a kid with a neurological disorder so rare that there are maybe 100 cases worldwide, and now imagine that kid unable to run or walk or hang up her own jacket and almost a full year younger than everyone else in her class. 

There are 127 private special education elementary schools in New York City that serve elementary school age kids with 13 different classifications of disability. My guess is that Teeny will be classified with "other health impairment" (OHI), which is pretty uncommon so the schools don't cater to it. The overwhelming majority of these schools are for kids with learning disabilities or who are on the spectrum. Those schools are not as supportive as Teeny will need. Then there are the schools for kids with emotional disturbances, also not for her, and finally the schools for the multiply disabled, which are too supportive and not academic enough for her. Then there are over 1,800 public schools in the five boroughs, all of which are supposed to accommodate the needs of the students zoned to them. Unfortunately for Teeny, we live in the worst district in the city, with wildly underperforming schools that cannot adequately meet the needs of even their neurotypical children. And our neighborhood school, the one we're zoned to, is not "barrier-free," which for us means it isn't wheelchair accessible, and therefore even if their academics were top-notch and their therapies extensive and exhaustive, it simply cannot accommodate Teeny. 

The idea of having to go through this same ringer again a second time with even fewer prospects for a child I believe in my bones should not be going into kindergarten next year made me feel weak. I had done lots of research on special ed private schools while we were looking at schools for Bee, and what I learned is that Teeny, because of her particular set of needs, has even fewer options than Bee did.  For Bee, we had narrowed the list down to about twelve and in the end applied to them all. 
For Teeny, we had two crappy choices: one, be prepared to front up to $120,000 per year for tuition at one school that accepts only four special needs kids like Teeny per year, or two, move to a particular district on the Upper West Side to improve our chances of getting picked in the lottery for admission to a public school that has a program for kids with physical disabilities. 

So when the summer of 2015 rolled around and the emails and meeting invites started to come in for the Turning 5 process -- the DOE's lingo for that same awful cutthroat rite of passage but for the special ed preschool set -- I almost felt like I was experiencing PTSD. 

Since the research had turned up so few leads, we called NYC's highest profile special needs attorney and set up a consult. With her $450 per hour clock ticking, we asked her what to do. After listening to our story and looking over some of the documents we'd brought along, she told us I'd been right. She named those same two options, and she admitted that neither were ideal. We chatted about a handful of other schools, but she agreed that all of them were pretty inappropriate for Teeny. It was sobering when she said very seriously that there was a very real risk of not getting a good placement. In her opinion, our best bet would be just to move. I laughed. But she wasn't smiling. 

Then I went to a lecture by a prominent NYC special needs advocate. I lingered after everyone else, hoping to get a different answer from her. All my kids, she said, go to one of the two schools you've already identified. So if those won't work for you, I suggest you seriously think about getting out of the city. Again! I really couldn't believe it. 

We do not have $120,000 to front for one year of tuition, but even if we did, that school got crossed off my list when I called them and they refused to talk to me because of Teeny's birthday. They said they use the ISAAGNY cutoff dates and not the DOE dates because they are a private school that occasionally opens its doors to special ed students, not a special ed school for kids placed there by the DOE. So since she wasn't going to be 5 by September 1, she would not be considered for admission. So the DOE was punishing her for being too old to stay back but this particular school was punishing her for being too young to move ahead. 

It might have been easier to come up with $120,000 than to actually entertain the thought of moving into the Upper West Side district that houses the public school that was our other option because that neighborhood is far pricier than ours -- far more than $120,000 more in equivalent real estate, anyway. Be that as it may, I thought I might have a shot at getting her in from out of district based on her charm and level of school readiness. I worked every single angle. I emailed, called and texted everyone I knew who had a kid or knew of someone who had a kid at that school. I tried to reach out to the administration via my CPSE coordinator. I showed up with my adorable kid in her adorable wheelchair at their spring fair and I talked to everyone with a name tag. With all I had, I kept trying for six months. And some people replied to me because they were nice people and genuinely wanted to help, but it seemed that no one could. No one from the school ever got back to me, and the more I asked, the more I heard it was a total crapshoot because while they said their inclusion program was populated by "lottery,"  what little feedback I did get seemed to imply that this was code for "we cherry pick our special ed kids and don't have to admit it to anyone." Which was not any more reassuring than the other option.

I also tried to explore pendency. Pendency, in DOE-speak, is when you like the IEP you have and you sue the DOE to get them to keep it as-is for one more year. So in Teeny's case that would mean getting to hold her back and do another year of preschool. I was told right away that her school would not, could not do this. There was another school they could refer us to that did, but when I talked to them, they said that Teeny was far too skilled for their programming and that she'd be better off in a more academic environment.

I was essentially striking out before even getting started. 

So, we're moving. Not today, but soon. 

We are moving to a state where the public schools are excellent, more consistent, more inclusive. Where both of our girls can go to the same schools and have their very different needs met. Where because the cutoff for kindergarten is September 1 and not December 31 like in New York City, Teeny not only can but would have to do another year of integrated preschool. 

We are moving to where this new neurologist can help build a team that will follow Teeny for the rest of her life. Where I lived for six years, where my birth mother settled and spent 30 years raising a family. Where she and I met.

My grand- and great-grandparents came through Ellis Island and these days, even though as an adoptee I am not technically related to them, I have been identifying with them more as I think about this very big thing we are about to do so that Teeny has better opportunities in education. Truthfully, I know very little about what brought my great-grandparents to this country. I don't know what they left behind and whether they were fleeing something or someone. I remind myself that leaving everything you knew in the hopes of a better life for yourself and your children is something that happens all the time. All the time. But I have felt so stuck for months. I don't know how to write. I don't know how to connect with people. I don't know what to buy, what to save, what to throw away. I don't know how to say goodbye. I don't know how to sell an apartment or buy a house. I feel like I've just stepped off the trampoline we got for Teeny for Christmas, dizzy and shaky and about to fall over and wholly unsure of my next step and whether it would me on solid ground.

People move all the time, I tell myself. And we are going somewhere we know. Somewhere we love. I chose this. I want this. I know it's right. And still. It's so scary.

Despite my to do lists and timelines and spreadsheets, I am completely unable to visualize my life as it will be six months from now, in part because we have decided it's too soon to tell the kids (so please don't spill the beans)! For now, though, we are packing a box at a time. We are updating appliances in our apartment and painting walls and doors that need brightening. We told Bee's school. After all that work last year, that one really hurt. We are processing with family and friends who are sad to see us go, and imposing on family and friends in the new area who are helping us make decisions. And soon, we list the apartment. Then, we cross our fingers and wait. Wish us luck!

Tuesday, January 26, 2016

Start Spreadin' The News... Part Two

Teeny had two very big appointments last November. The first appointment was with a neurologist at Harvard and Mass General who specializes in cerebellar dysfunction. It took me two and a half years to get this appointment. Back in 2012, post-MRI, I read a bunch of medical articles about cerebellar hypoplasia and saw his name listed as author over and over. I felt like he might help us understand how Teeny learns, since his research led efforts to prove that the cerebellum does more than control motor function. He believes that it plays a role in learning and cognition. This doctor is mostly a researcher who rarely sees patients and even more rarely sees pediatric patients, but I felt that if I could just get him to look at her MRI, he would be interested. So I called and I emailed and I called more and I emailed more and I was on the verge of giving up when I heard an interview with him on NPR here, and this part was like saying Teeny's name:

"Research .... supports the idea that the cerebellum really has just one job: It takes clumsy actions or functions and makes them more refined. "It doesn't make things. It makes things better," Schmahmann says. That's pretty straightforward when it comes to movement. The brain's motor cortex tells your legs to start walking. The cerebellum keeps your stride smooth and steady and balanced. "What we now understand is what that cerebellum is doing to movement, it's also doing to intellect and personality and emotional processing." 

This re-ignited my spark, so I started calling and emailing again... and finally, finally, we got an appointment. This is really great news, right? YES. And it was also terrifying. Johnny was worried that he would tell us that we caused this, that we were somehow too rough with her and hurt her brain. A tiny part of me heard the naysayers in my head saying that her homebirth was what caused it, even though I knew better. Deep down I was worried that he would tell us he doesn't know what caused it or how we can help her. I didn't share Johnny's worry because I know we didn't cause it, and he didn't share my worry because he knows that with everything we do with her and for her, we are helping her already. So we had to agree to set aside our worries and just show up with an open mind and hear whatever he had to say. 

And what he said was that Teeny has genetically caused pontocerebellar hypoplasia.

Do not Google this unless you are prepared to see something horrible. The bad news is that PCH is devastating. It's rare. It's often fatal, often in infancy. The good news, if there can be good news when your child has PCH, is that this doctor believes that she has a new variant, and that this new variant is not neurodegenerative but rather neurodevelopmental. That is fancy for the fact that when Teeny learns a skill, she keeps it. She is more capable than she was at birth, where most kiddos with PCH by contrast lose abilities as time goes on. He said there is no question about her diagnosis from her scans but that she has more to teach us all because while she and PCH2A kids (kids with the most well studied variant) have some symptoms in common, such as being small and borderline (or not so borderline) microcephalic, being very sleepy as newborns and hard to rouse, having issues with tone. But where most PCH2A kids have terrible seizures, difficulty with talking and walking, and none of them eat on their own, Teeny is completely different. He was very, very surprised at her abilities. But he didn't really know what to make of what he saw. In short, after three hours of testing and discussion, we left feeling confused. We got a lot of information but none of it actually changes anything. Now we know there is so much to do, but there is nothing to do. We are doing everything right, but there is no cure. There is no way to know how she will do, since most of the children who have gone before her have already died. He said that just by looking at her scans and at the exact areas of damage to her cerebellum, he could predict some areas of strength and some of weakness. He said she could start to seize anytime. But he also said that it was his firm belief that he could prove this was autosomal (genetic) and recessive. He felt Teeny's story has not yet been written, and I asked him if he would be the one to write it. He said yes! I asked him if that meant he would be her new neurologist and he said he would be delighted. We have a lot to learn from him and my hope is that he feels he and medicine in general have a lot to learn from her. 

So great, now we know that I didn't cause it and Johnny didn't cause it but in reality, we both caused it because apparently we are both carriers of this terrible thing. How can that be? PCH is so rare that there are maybe 100 cases worldwide, yet he -- this person I really believe is as close to a soulmate as one can possibly have -- and I -- this adoptee with a hodgepodge of unknown genetics --  came together and made this happen? That is too much for me to wrap my head around, so we'll just leave it there for now.

Her second appointment was for a neuropsychological evaluation, which was done the following day by a colleague of the neurologist also at Mass General. We decided to do this to help us understand how she learns and what her potential could be. Schools like these evaluations to help make their admissions decisions because the test evaluates school readiness and, somehow, cognitive potential. It also makes recommendations for educational settings and related services. This test is a very big deal and usually a very expensive deal. When we had it scheduled in New York, we were quoted upwards of $6,000 and no one took insurance. But because this one was set up in conjunction with the neurology testing and because this particular neuropsychologist happened to be in my network, we paid nothing. Not even a co-pay.

The neuropsychologist and her assistants completed the testing in a few hours; it resulted in fourteen pages of confusing scores, recommendations and other details. The document does not do my daughter justice. She is so much more than scores and observations and a litany of things she cannot do and a short list of things she can. And at the same time, the neuropsychologist and those who worked with her that day did have some insights into her abilities and her potential. As much as I hate to admit it, the document does in some way describe her. The bottom line is twofold: one, PCH is so rare and strange that her strengths and weaknesses are a little all over the place (so, for example, she tests very high for "school readiness" but very low on visual spatial skills) so her scores are essentially meaningless because their pattern is that they have no pattern, and two, because of her strong social, emotional and verbal aptitudes, there is no better setting for her than an integrated, supportive classroom.

Which is exactly what we knew all along.

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. 

Tuesday, August 4, 2015

On your marks, get set, go!

There weren't many people in our neighborhood out at 7:15 this past Sunday morning, but if you were one of them, you might have seen a duo biking down Lenox Avenue headed towards the Whole Foods on the Upper West Side. You might have heard them calling back and forth to each other. It might have sounded something like this:

Older woman: "Okay, we're gonna cross the short way when we get to the corner. Are you ready?" 

Little girl: "Ready!"

Older woman: "Thank you, Bee."

Or you might have heard this:

Older woman: "Hey, Bee, we have the light so double check and then you can go straight through when you get to the corner. Ready?" 

Little girl: "Ready!" 

Older woman: "Okay, good girl."

You might have heard the woman remind the girl to mind the doggie over there and oh, isn't she so cute? You might have heard the girl laugh and say that she got splashed when she biked through that last puddle. You would have seen them smiling at each other, enjoying that summer Sunday morning and those empty city streets. And I wonder, would you have sensed the fear in that mother’s heart that she worked so hard to conceal from her daughter?

I didn’t learn to ride a bike until I was nine. Picture it: I was the oldest kid in the neighborhood to learn and a total crybaby to boot. I had a big dorky second-hand bike with a purple flowered banana seat and matching basket. My dad unscrewed the training wheels and dutifully ran behind me down the sidewalk, letting go of the seat when he thought I'd gotten it. But I hadn’t; instead I got 21 stitches in my chin when I lost control of the handlebars and landed face first on a sharp bump in the concrete. I was an ugly sight on a bike, to say the least.

Completely unlike me, Bee learned to ride her bike at four and a half the very first time she got on it. I had nothing to do with it. I wasn’t there for the moment itself so I can’t tell you how it happened. I can tell you that while she figured out how to ride it right away, it took her months to learn to use the brakes, so for the first six months or so, she never got to ride her bike anywhere but up and down the back courtyard. About a month ago, we ran into some friends of ours at summer camp drop-off. They – a five-year-old, a seven-year-old and their dad -- were locking up their bikes outside of the school. And that got me thinking.

Thirty-three years after those stitches, I love riding my bike. When Johnny and I moved out of Brooklyn five-plus years ago, I recommitted to riding to work as often as I could since I would no longer have to battle with steep bridges and long mileage. To make myself feel better about biking through midtown Manhattan twice a day as the mother of two little ones, I took a class on biking in the city taught by Transportation Alternatives and vowed to obey (most) traffic laws. I got a good helmet and I always wear it. Always. And I insist that whenever anyone else in our family is on anything with wheels – even an itty-bitty scooter – they wear a helmet. Even Teeny, strapped in three different places into her adaptive trike that weighs so much she can barely push the pedals, always wears a helmet. I try to ride and encourage the others to ride as often as I can, because I really, really like riding my bike and I want them to as well.

I also really, really like taking Bee to school or camp. It’s not always possible given my work schedule, but I try as often as I can. Since her school and her camp are on my way into the office, taking her in always meant leaving the bike at home and going by subway. Until I saw this other family and I got an idea.

“Hey, Bee. How would you like to try biking to camp with me?” I suggested casually.

“YES!” she shrieked. I didn’t expect such a decisive response. I thought we would talk about it for a few weeks and that would give me time to think it through. But she didn’t give me the option of backing out. The next morning she was ready. She woke me up before my alarm went off, already dressed with her helmet and backpack on. She was ready to go.

Her commute to summer camp is 2.8 miles one way. In New York City. During rush hour. In the summer. On many levels, that’s a very big deal for a very little kid. Most days she’s super psyched to ride and she does so without complaint, but not always. She gets tired. She gets hungry and thirsty. She gets sweaty. There’s a very steep hill that takes up about four blocks of the ride; on very hot days we have pushed our bikes up some or all of this stretch and on one particularly dismal morning I hung her bike from the handlebars of mine. I pushed them both up the hill myself and tried not to scream while she staggered along about twenty feet behind me, whining and moaning with every step. We laughed about that day later, but at the time I was pretty sure neither of us would survive it. We’ve gotten better. We pack a snack, an extra rubber band for sweaty pony tails, a thermos of cool water. I got Bee her own bike lock and I taught her how to use the combination. And we try to have a good time.

I am fully aware that biking in New York City can be dangerous, even for an adult on her own. So in addition to trying to keep it fun, I talk a lot about safety. As we ride, we banter back and forth. I like to hear her voice constantly so I know she’s engaged and paying attention and close to me. We talk about why I’m always going to say “Mind the people!” when we are on a busy street even though the hundredth time I did, she rolled her eyes and said “I know to mind the people, Mama!” I explain that I trust her but that I don’t trust anyone else out on the street. One morning I told her to mind the cute little doggies within earshot of the woman walking them, and the woman turned and thanked me for doing so because her dogs were skittish and afraid of things like children and bikes. After that, she stopped complaining. We choose our route carefully, selecting flat, shady streets with wide sidewalks, avoiding streets that attract heavy foot traffic with schools, subway entrances and stores. We know where the hills are, where the construction is, where the parks are. I ride on the sidewalk with her, always preferring to stay closer to the curb while she stays on the inside, away from the cars. We ride “double file” like that when we can, and single file when we can’t. We avoid crazy thoroughfares, swapping them for corners with crossing guards and quieter intersections that have clear visibility.

When she realized with some delight that she was now getting to cross the street – many streets in fact -- without having to hold my hand, I got the sense that we also needed a system. So every single time we approach a corner, I tell her what our next move will be. No matter what that is, the next thing out of my mouth is always “Ready?” and the only response to that is “Ready!” When I hear that, I thank her or praise her in some way and we proceed. If she responds any other way, I stop and check that she’s okay.

Once she didn’t say “Ready!” even though she was. To prove a point, I stopped short and she pedaled right into my bike. “But Maa-aam-aaah,” she wailed. “I said okay!”  We talked about why it was so important for her to have a consistent response. I told her that hearing her call “Ready!” was my favorite thing in the world.

She was incredulous. “Even more than me telling you I love you?” she asked.

I nodded. “Even more than that. It is my job to make sure I do everything I can to keep you safe. So when I ask if you’re ready to cross, please tell me you’re ready. It's kind of like holding your hand. When I hear you say you're ready to cross the street, you’re telling me you’re with me, you’re safe and we’re on the same page. Once I know that, then I want to hear how much you love me!”

I tell her that she needs to be looking ahead of her and everywhere else at the same time. I know that this little creature would be defenseless against a bleary-eyed New York City cabbie finishing a fourteen-hour shift as she bikes determinedly across 125th Street. So when I feel at all uneasy, I stop right in the middle of the busy avenue as she pedals across, knowing that turning cars will definitely see me before they have the chance to ever knock into her. Maybe there’s no such thing as truly safe bike riding in the city, but it is critical that we do our best to practice safer riding.  

I remember reading once that parenting is a long process of letting go, starting with severing the umbilical cord at birth and ending with the death of the parent. I think about that process a lot: just about everything we as parents do is in some way preparing our children for life on their own. Many of these little moments are harder for me than they are for my kids and they have seared themselves into my memory as milestones that I look back on with a mixture of nostalgia and relief that we made it through. My first day back at work after maternity leave with Bee. When Teeny weaned herself shortly after she turned two, and putting her in a wheelchair on the school bus weeks before her third birthday. Letting Bee go on her first sleepover. Explaining to Teeny as I did last night that at almost four, she was big enough to fall asleep without Mama in her bed and letting her weep quietly to herself for the longest ten or fifteen minutes I have experienced in years. And making the decision to bike with Bee.

I think we both really enjoy our rides together, but the truth is that I would hold her hand as we cross the street forever if I could. Part of me loves watching her grow into her own person. I am very proud of who Bee is becoming, and at the same time, so much of me would still keep her little. I would not necessarily choose to have this independent little human who just this morning insisted on dyeing a permanent blue-black streak into her hair as I touched up my grey roots. I looked at her as I wrapped tin foil around the streak and clipped it out of the way. She was wearing my high heeled wedges and her Elsa underwear. She’s tall now, and so lean. Pierced ears, painted nails. About to start kindergarten. She swims underwater with goggles and no floaties. Reads. Bops around to music on her own iPod. What's next? Sometimes I would keep her little forever: a chunky baby snuggled into my chest in the wrap, dependent on me for everything. Pushing Bee and her sister to become independent individuals is sometimes more of a push for me than it is for them, and it is in recognition of this that I choose to continue riding with her even though I know that I can’t keep her 100% safe 100% of the time. Unless I keep her home for the rest of her life, could I ever, really?

She only has three more days of summer camp. The new school she starts in September is 4.9 miles from home and I’m not sure she’ll be able to do that kind of distance until she’s a little bigger and her bike is a little better. Maybe she’ll want to try it, or maybe after her three weeks of vacation she’ll decide that she would rather take the train after all. For now, I just hope she wants to ride tomorrow too.