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.

Thursday, July 2, 2015

Neurological vs neurotypical: a compare and contrast

After I wrote my last post, I kept thinking about how much harder it is for Teeny to do things that for Bee were easy. I thought about how much harder Teeny has to work and I thought about how much longer the road from point A to point B feels when it comes to her than it does for her sister. Here are 8 examples of what I mean.

1. Infancy

Bee: She was a needy baby and only an easy one because I wore her everywhere and never put her down. She was clingy to me and I to her. She nursed day and night and was a chunky baby with a healthy appetite. Although the new mama in me worried constantly, she did everything she was supposed to do either early or right on schedule. She was easily entertained and I could soothe any fussy behavior with nursing, singing, or swaying. So I sang to her, walked with her, read to her constantly. I tried classes and workshops of all kinds, I got on neighborhood parenting listservs and I read every baby book I could get my hands on. I met a friend of mine with a baby Bee's age for weekly swims, walks and talks. I loved every second.

Teeny: A beautiful and delightful baby in her own way as well, she was very sleepy right from birth. She was slow to meet milestones; some she missed altogether. People told me not to question it, to relax and just get some rest; after all, if she was sleeping well I should be grateful! But I knew it wasn't right. I had to wake her up to nurse and as a result she lost a lot of weight in her first ten days of life. Within a few weeks, she developed sore spots in her armpits and in the creases between her legs from being so low tone and the doctor told me to use diaper cream on them. I joked about second baby syndrome with my friends and in some ways she had it -- I bathed her less, fussed less about the laundry and the messy house. I encouraged her to use a pacifier. I bought regular diapers and wipes instead of insisting on cloth. Inside I felt guilty because part of me knew she needed more than she was getting, but she seemed so happy that I had a hard time understanding what was going on. After months of hearing "Don't worry! Every baby develops at her own pace!" I swallowed my pride as a mother and began to plead with everyone I knew for help. And finally, someone whispered the words "early intervention," which meant nothing to me at the time, but I knew someone who knew someone who remembered a friend who worked with someone who went through the process and gave me a name to call. It took three weeks from that awful whisper to the moment I made the call and it took 45 days of testing and evaluations from that moment to recommendation for services and two months after that we were leaving the neurologist's office shell-shocked and gripping the piece of paper that said, essentially, Your Lives Change Today.

2. Preschool

Bee: We realized she was going to be ready for preschool before we were planning to send her. We found a gentle, loving  school that had a very part-time program that we felt was the right fit for her so we applied, got in and wrote a check to secure the spot. She went to this play-based preschool for three years and we loved it. There was a flexible phase-in for everything and the curriculum was emergent. Their "day" in the twos class was two and a half hours three days a week and over the next two years, she worked up to a four hour day every day. Every day either Johnny or I dropped her off (in the car) and every day either Johnny or I picked her up (in the car). There were four teachers for a class of 22. Her class went to the play yard once a day and on Wednesdays she had music. The rest of the time she did art, dramatic play, circle, exploration and other things and absolutely everything she did was celebrated. Yet there was never even a question about whether this school would be right for Teeny. 

Teeny: Depending on her birthday, the DOHMH may age a child out of Early Intervention before her third birthday, and that is what happened with Teeny. Because she was born in the fall, the DOH ended her services and transferred her to the DOE's CPSE, who determined that she was ready to commute on a school bus to and from a full day of preschool while she was still two, And because the DOE also determines whether a particular school is an appropriate setting for a particular child, we didn't get to choose where she went. Her bus picks her up anywhere between 8:10 and 8:15. We have three minutes to get her down there or the bus leaves without her and her commute is an hour or more each way. We aren't allowed on the bus to say goodbye and for safety reasons she isn't allowed to eat anything on the bus either. She's in school from the time she arrives -- around 9 or 9:15 -- until 2:15. During that time she is pulled out a dozen times per week for PT, OT, speech and for visits to another class. She has a special ed teacher, two assistant teachers, a full-time 1:1 paraprofessional for mobility and a social worker in addition to her therapists. Her schedule is so full that I don't even know when she has music and art although I know she has both once a week. She gets home between 3:30 and 4:00 every day unless we pick her up to take her directly to an after-school therapy and she is absolutely exhausted when she gets home. 

3. After-school activities

Bee: Unless she has a playdate, one of her parents picks her up every single day. She has never had a babysitter who wasn't a family member or a family friend. She has weekly swim and ballet lessons and lots of unstructured play time to read, pretend, ride her bike, dress up, color or paint. 

Teeny: Teeny has the busiest schedule of anyone I know, including adults. On most Mondays she has ballet, on most Tuesdays and Wednesdays she has swim and on Thursdays in spring and fall, she has hippotherapy way out in Brooklyn. This last one is so important that I actually take a half day off every single time she has a session so I can pick her up from school and take her in her wheelchair all the way out there and then get her home. For one single half-hour session, it takes us an hour and a half each way using accessible subway stations and then walking. On Fridays, her bus ride home takes significantly longer than on other days because of weekend traffic, so by the time she gets home she has maybe an hour or so of unstructured playtime with her sister before it's time for dinner and bath. On weekends we try to take her to family swim at the Y so she can exercise her legs. In June we got a month-long slot at a college's speech therapy clinic with a student so that meant getting her there twice a week on top of everything else. She also just got a mandate for two additional hours of physical therapy peer week outside of school and they took the place of the speech sessions that just ended. Playdates are a major undertaking although she loves them because her friends are scattered all over the city and many are not ready for drop-off. They're usually day long events that often turn into family affairs, which is great but means they are pretty few and far between. 

4. Doctor visits

Bee: She goes once a year for a checkup and whenever she gets sick, which is practically never. This year she got caught up with all her vaccines until she's eleven, so her checkups will be even less involved. In the fall, she gets a flu mist. Once we were in a car accident and although I examined every inch of her body and believed inside and out that she didn't have so much as a scratch on her, I took her (and Teeny) to the ER just because I knew I would never forgive myself if I'd missed something (which I hadn't). She has never been to the doctor for any other reason. 

Teeny: Teeny has a team consisting of a neurologist, physiatrist, developmental pediatrician and regular pediatrician. She also has an orthopedist, an orthotist and a geneticist and she has seen an ENT and an ophthalmologist. There's a handful of specialists around the country that I spend a fair amount of time chasing for information and we are setting up a series of evaluations with a cerebellar neurobiologist and his team. Over the years, I have called and interviewed a dozen or more therapists and specialists for every one that she sees. And then there's the paperwork. The evaluations. The progress reports. The forms. For every form or application, I need letters of support from all of her team and for every appointment, I need to explain her diagnoses and her needs and for every appointment I have to ask whether they take our insurance, if they are out of network, what the co-pay is, and whether they also take Medicaid, which is her secondary insurance. 

5. Birthday parties

Bee: We sometimes ask if siblings are allowed just because without a babysitter it's sometimes necessary for us to bring both kids if we're going to bring one. Then we put it on the calendar, make sure they have a vegan treat packed for when the other kids have pizza and cake and go. 

Teeny: We call the location to see if it's accessible and to determine if there are activities she can take part in, and whether she can keep her shoes on inside because she needs them to wear her braces. Only then do we ask about siblings, put it on the calendar, make sure we pack a vegan treat to eat and go.

6. Mornings

Bee: She wakes up usually before 6 and then gets into bed with me. She snuggles for maybe 30 seconds and then rolls on top of me, pulls my eyelids open, and bounces on me until getting up seems much more palatable than lying there with her harassing me for attention. One I'm up, I cherish the mornings with her one on one so I grin and bear the rough start, unless I absolutely cannot. Lately she seems to know this so she negotiates. "If you let me use my iPad, I'll let you sleep." Occasionally this is too good to pass up even though I know this means she is rotting her brain with episodes of The Littlest Pet Shop and My Little Pony and whatever other crap she can get her hands on.

Teeny: This kid is so tired from her busy days that she sleeps late. You know: mouth open, tousled hair. The kid is out. Usually I have to wake her so she doesn't miss her bus, and when she does finally wake up, it's slowly and sleepily. She calls to me and I snuggle her while she stretches, yawns, blinks and -- on good days -- murmurs "I didn't pee on myself! I'm dry!"  (On not so good days she says mournfully, "I peed in my bed. I'm sorry." Luckily we have way more good days than not so good days.) 

7. Clothes

Bee: It's very rare that Bee lets me pick anything out for her. She decides what she wears and despite my best efforts, her only criterion is, "do I look pretty?" Every day she asks this and every day I tell her she is beautiful no matter what she wears. She loves to deck herself out in princess dresses, makeup and the high heels that sit unused in my closet and doesn't understand why she can't dress that way for school. 

Teeny: Her clothes have to be more utilitarian. She has to be able to crawl in her clothing, so dresses that are longer than mid-thigh are out. We have to think ahead about where she will be and whether there is linoleum, carpeting or wood floors, so that what she wears protects her knees. A carpet can rip up her knees and highly buffed floors can be dangerously slippery if she has to take off her shoes and braces for any reason. She has to be dressed to do physical therapy or ride a horse. She can only wear one type of special socks that are seamless and very long and each pair costs a fortune. She has only two pairs of shoes: both wide-width sneakers that fit over her braces. She can't wear flip-flops, sandals or Crocs in the summer and she can't wear boots in the winter. She can't play dress up in heels like her sister so she crawls around with them on her hands instead and while she will sometimes put on a princess dress or butterfly wings, it's so frustrating not to be able to crawl or cruise comfortably that she can't tolerate either for long. 

8. Communication

Bee: She started to talk when she was less than a year old. Her first word was "cat." We never signed much with her even though it was very popular at the time because she picked up new words faster than we could learn the signs for them. The one sign she does know is the one for "I love you," which I taught to her so we could have our own silent, secret message to each other. We sign it to each other when we say goodbye at school or whenever I see her from across a room and can't call out to her. Sometimes I just sign it to her so she knows I'm thinking about her. When she was three her teachers told us she was delayed in pronouncing the hard "c" and hard "g" sounds correctly -- for example, she said "tar" instead of car and "doh" instead of "go" -- and I freaked out. A handful of speech sessions paid out of pocket got her nowhere so I fretted and worried until I pulled myself together had a reality check. This was not a problem. We pulled her from speech and decided we'd wait to see what happened with a little time. Sure enough, the issue resolved itself almost overnight. She's reading fairly well now and she likes to write letters, cards and stories. She is pretty expressive emotionally, too. 

Teeny: Her communication is slowed significantly by her motor issues. Her first word was "art" and until she got easier to understand, we kept a spreadsheet with a list of words she could say with a transliteration of how each word sounded the way she said it and we shared it with her teachers, therapists and family members so they could try to understand her more clearly. Signing was so difficult for her that she never managed more than a handful of signs even though she understood many. The one sign she tries to use is "I love you," like her sister but it always prompts a mini OT session. This is because her middle and ring fingers don't bend by themselves, so she can't make the sign correctly. "Show me 'I love you,'" she says every single time and every single time I have to hold those two fingers down for her while she holds the others out and pulls her hand to her chest. "I love you," she beams when she gets it right. The same goes for holding up fingers to show how old she is. Only in the past month has she learned to show someone she is three, which she does by holding her index finger down with her thumb in a modified "OK" symbol. She can now show you four and five as well, and she is so proud of it. She is able to express herself well now and get all of her needs met, although she needs a lot of help. Even with speech three times per week in school and more outside when we can afford it, she has a hard time with narration, conversation, pronunciation. She struggles when she's frustrated or when we don't understand her. I usually understand her just fine but realize many other people may not. If I have trouble, she sighs like a teenager. "No, Mama," she corrects, and says it again with a harrumph. Understandably, she becomes increasingly frustrated as I point to things and try to guess what the hell she means. Oddly, she actually pronounces the hard "c" as in car and hard "g" as in good just fine.

Then there's the one thing that's the same no matter how you slice it, which is

1. Love

Bee and Teeny: In some ways I love them differently and in some ways I love them the same. Sometimes I say that Teeny is the best thing that ever happened to me and that's because in the way that Bee is the child I knew I always wanted, Teeny is the child I never knew I so desperately needed. They are both happy, bright, giggly, moody, emotional, affectionate, silly, loving, playful, creative, tenacious, curious and kind. They are sisters and best friends and Bee is a wonderful teacher and guide to the world's most hardworking student. I can't imagine one of them without the other and I can't imagine my life without them both. Together they make us a family.