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.

Monday, June 15, 2015

So You Want to Know What it's Like?

As I get more time as a special needs parent under my belt, the lists I've seen on the internet about the top ten things special needs moms want you to know about themselves bother me more and more. Same goes for the lists of things you shouldn't say to them and the lists of things they'll never say to you. I don't like the passive aggressive tone they always take: we're so stoic and we'll never ask you for help but our lives are so much harder than yours. You don't get our pain. We struggle and slave and we have it so rough and these lists say we don't want your pity but if you read between the lines it sure sounds like we do. 

Here's my comprehensive list of all the things I really want you to know about what it's like to be a special needs parent:

1) We can't be reduced to a list you read online. 

Yep, that's it. 

What I can tell you about this one particular special needs parent is this: I am a parent. Just like everyone else with children. I am a parent of two children I love more than life itself and I do everything I can to make sure their needs are being met. Their lives aren't perfect and I can't do everything I would like to for them and with them, but that's okay. I think it's good for them to know that their parents aren't perfect and that life can be frustrating. We talk as honestly and openly as we can with a three-year-old and a five-year-old and for the most part we all genuinely enjoy being around each other. And yes, things are hard. Lots of things are hard that have nothing to do with special needs and that's because life is hard for everyone. 

Like those lists will tell you, it's true that sometimes I don't want to talk and that I sometimes feel angry or sad. It's true that I put myself last. I hate it when doctors and therapists refer to me as "Mom" instead of by my name. I do have a second full-time job as bookkeeper and secretary for my little one and even though she's in school now, her needs are so great that Johnny still stays at home to take care of her and our family. When some teenagers on our street called Teeny the r-word a couple months ago, we thought we might fall apart. Some of the decisions we have to make and places we have to go and checks we have to write and calls we have to make all have an impact on us. For me, all these things come last: my marriage, my extended family, my friendships and social life, how quickly I return emails and calls from friends and family, exercise, how much sleep I get and my overall health. When we first got Teeny's diagnosis I mentioned some things I wanted my friends to do for me here, and they did. But life goes on and new crises pop up and we all get busy and the wave of manicures, coffees and mama nights out run dry and then it's just regular life again.

There's some truth to the oxygen mask thing. The stress really gets to me. I do lots of things to take care of myself, like go on vacation even when there are so many reasons not to. I try to meditate. I can't say I do much yoga, although I would like to. I run most mornings when I travel and I bike to work about half the time when I'm home. I sing along (terribly) to loud music and dance around the house with my kids. When it works in my schedule, I call into a special needs parent support group but it often frustrates me more than it helps because our daughter's issue is pretty rare and our experiences so different. Johnny and I call out things to be grateful for pretty regularly and I do make an effort to stay in touch with my friends. But there's never enough time, and I get down on myself for never getting to do half the things it seems like everyone else I know has the time to do.

What's hardest for me about being a special needs parent -- more than all the doctor's appointments, therapy sessions, calls to insurance companies, forms to fill out, advocates to call, workshops to attend, everything else we do for Teeny put together and all the things we never get to do that it feels like everyone else is out there doing all the time -- is that I am also the parent of a neurotypical child. The imbalance between what Teeny needs and gets and what Bee needs and gets breaks my heart.

I am not showing off when I say that Bee is a super bright kid. I can't take any credit for all the amazing things she is; she's just who she is. She is brave and independent. She's creative, curious and inspired and she has a silly sense of humor. Her reading and writing get better every day and she loves to draw, paint and make things. Of course she loves Frozen like most kids but I adore how she belts out songs by David Bowie, the Beatles, Culture Club, the Ramones, Madonna, Cyndi Lauper and more. She almost never struggles with separation; she has been going on drop off play dates since she was two. After her fifth birthday, she decided she wanted her ears pierced and she convinced me she was ready so we took her. She recently had her first sleepover and didn't want to come home, even well into the next day. Not a week after "graduating" from nursery school she started a new summer camp and spent half a day with 27 other kindergartners and four teachers she'd never met before at her new school. She's vegan and compassionate and caring and very, very concerned about the world, animals, the environment, her family and friends and most of all, her little sister, whom she plans to marry when she grows up. She is the kind of kid you dream about. She's easy, she's fun and she's engaged. And she knows she gets the shaft compared to her sister, and that's what sucks the most. 

I lie awake at night and think about how she should be taking dance or soccer or art classes like some of her pals. She should be learning an instrument because she wants to and seems ready. She loves to cook and wants to make new things with me every day. At five-and-a-half and nearly 50 pounds she always wants "a pick-up hug" or to sit in my lap like she did when she was a baby. But she can't go to ballet downtown because it's too far, even though every single week I take a few hours off work to schlep with Teeny and her wheelchair two hours each way on the subway to get to one very important half-hour therapy session. She can't take an instrument because we can't afford the cost but we scrape together what we have to so that Teeny can get extra speech therapy outside of school. She can't cook many things with me because Teeny wants to as well and sometimes the kitchen just isn't a safe place for a handicapped child who gets underfoot. And because she can't walk independently and needs to be carried a lot, Teeny gets my lap 9 out of 10 times.

My best moments as a special needs parent are when I'm thinking about both of my children. So when I sometimes feel like I should be doing more for Teeny, I try to remember to think about what Bee needs. Lucky for her, as the big sister she gets to do everything first. She does take swim, she has taken ballet. She has some really good friends and tons of books and toys and the top bunk in her room and her own iPad. She's going to an awesome summer camp and in September she'll start kindergarten at a school that was practically tailor-made for her. But I know that what she needs most is time with Mama. She wants me to read with her, walk with her, play with her. She is perfectly happy to go food shopping with me or help me take out the trash. She tells me over and over that she just wants one on one time with me and she absolutely can't get enough. So we have some rituals. Most mornings she wakes me up an hour or so earlier than anyone else gets up and we have a dance party or we make a smoothie or we paint her nails. We play dress-up with my clothes and jewelry. And then there are special moments like when I tuck a secret note in her lunch or pick her up from school when she's expecting her daddy or buy her a trinket like a sheet of stickers. Yesterday she got to come to work with me for a quick visit. She marveled at how many of her drawings and paintings I had on display in my office and how many pictures of her were framed and hung on the walls. While I typed some emails, she sat at my conference table and ate her snack with my plate and fork and she drew me a picture with my printer paper and neon highlighters and she was on top of the world and didn't want to leave when it was time. That's not much, and it made her feel so good. When I got home from work later that day, both girls were playing together, giggling about how they wanted to surprise me with something they'd done. Seeing them both so happy together, hearing Bee calling "We're hiding from you! We want to surprise you!" and Teeny shouting "We BOTH did it!" made me feel like I was the best special needs parent in the world.

PS: Up next will be a compare and contrast of ten basic things that both kids needed and what it took to get it. 

Wednesday, June 3, 2015

Vacation All I Ever Wanted, Vacation Have To Get Away

It's a dark and stormy night and I'm nestled under a blanket on the couch in a tiny rented condo on the tip of Cape Cod. I can hear the rain patpatpat on the windowpanes and the wind is howling between the trees outside. As I type I realize I am living a childhood dream right at this very moment. I feel a little like Meg Murry from A Wrinke In Time, all grown up. My children are sleeping in the next room. My spouse is reading a book beside me. I have a cup of tea and a head full of ideas and as nature rages around me I am missing nothing but a big old dog at my feet to complete the visual. And I'm so happy.

This is our summer vacation and I'm in my happy place. I didn't always, but now I guard my family time as fiercely as I can. Four years in a row we've come here to get away and every single time I worry about whether it's the right choice.  We have a lot keeping us home. For weeks, even months beforehand, I debate with myself about whether I can take the time from work. I also stress because vacation sounds like luxury and for our single income family trying to stay afloat in the most expensive city in the country, luxury is something we just do without. Since becoming parents, vacation travel has been a debate of can-we-really-afford-to-go-away versus can-we-really-afford-not-to. So we scrimp and save and we keep it simple. We go off season so it's half the price. We rent for a week or use airbnb and we cook at home. We fill our pockets with shells and rocks and buy little more than snacks and trinkets. It isn't about all the things to do and see and buy and eat. It's about relaxing in a pretty place together, away from work and school and the computer and the phone and the school bus and the bills and the appointments and the meetings and the millions of things we cram into every single day of regular life. This year the usual debate came to an abrupt end when someone just instructed me to go when I wavered. It's absolutely necessary, she said; we need this precious time together. Away. Just you four.

The thing I worry about the most, more than the finances or being away from work, more than Bee missing school, more than finding care for the cats, more than anything else, is pulling Teeny from her services.

She's been getting services for three years now and each time she misses anything, I get nervous. DOE funded services in CPSE are a precious commodity and even one missed session feels like a terrible loss to me. The DOE worries about this too. They want to know that we take her education and related services seriously, probably because they foot the hefty bill. Teeny has a 12-month IEP which means that the DOE feels she is at risk of regression if she is without services for any length of time. In fact, we were told that if she had more than five consecutive unexcused absences, the school would have to report us and her spot could be given to someone else. Knowing this and knowing that she needs those services desperately, I fear that I am being selfish by pulling her out to bring her here, where for a week she has not worn her braces, used her walker, sat in her wheelchair, strung beads, worked with play-doh or done any of the many things she does painstakingly every single day.

What I forget is that children need time to connect the things they learn in the therapy gym and speech lab to real life. Two years ago in this town, she crawled up a flight of stairs for the first time by herself. She was five steps up when we noticed. Last year, she played tentatively in the sand with her sister, feeling the strange texture between her fingers and toes with curiosity instead of fear. And this year she has simply taken off. It's like the real world is one big OT, PT and speech session in which she has finally put together all the things she's been learning separately. 

This week she slung an arm casually around my neck as she nestled into my chest, semi-strapped into an Ergo she outgrew two years ago. She told me when her legs hurt and she needed me to adjust how I carried her, and when they felt fine. We chatted about all the things we saw as we walked along the beach. Together we bent down together so she could pick up dozens of rocks off the sand and toss them into the water. She dipped her fingers and toes in the cold water and puzzled over the way the salt left her feeling sticky and damp. On a hot day, the girls buried themselves up to the waist in the sand. 

She rode in her sister's lap in the stroller, the two of them snuggling and cuddling and giggling like only sisters can. They made up songs together that she not only remembered but sang to herself for days. She held her pee and poop "like big girl!" and used unfamiliar bathrooms all over town, staying almost completely dry all week. She had unstructured time in a wonderful playroom in the town library, had time to color with crayons, markers and pens of different sizes and widths on a big roll of easel paper we taped to the living room floor and she mostly listened as I read an entire 255-page book aloud, one chapter at a time. 

While Johnny and I snuggled on the couch reading, she played with letter-writing apps on her iPad that strengthen her fingers, coordination and pre-literacy skills. She has eaten probably hundreds of French fries and drank numerous fancy green smoothies. She allowed her sister to give her sixteen temporary Frozen-themed tattoos, making her look like one bad-ass three year old. She cruised along tables, chairs, benches and other pieces of furniture or structures using only one hand to steady herself, repeatedly refusing my light but concerned touch on her back or bottom to keep her steady. She actually walked, probably 20 or so barefoot paces down Commercial Street, pushing the stroller weighted down by her big sister. 

She has a long list of landmarks she looks for as we walk through the town's main drag. "Let's go see fishie!" she'd say, knowing we were a few blocks from the bench in the center of town with the big metal fish decoration on it. "We almost there to fishie!" That fish, whose engraved letters are perfectly sized for little fingers to trace one by one as she murmurs P-R-O-V-I-N-C-E-T-O-W-N, is a favorite of mine too. She also loves the froggy in the doorway of a local shop, taller than she is, with arms outstretched and waiting for her hug every time we pass it. The ice cream store. The rainbow pinwheels. The puppy on the window of the coffee shop. The beach and its dozen or more access points up and down the town. The enormous anchor near the pier: our number one destination every time we leave the house because I love how it appears smaller and smaller as the girls get bigger. 

And boy has she talked. Yesterday she looked out the window and casually uttered the longest sentence she's ever said. "I want to go for walk and get ice cream," she announced. "But," she added, pointing outside, "it's raining." I marveled at this and realized she's been talking this way all week. This past Sunday was Johnny's birthday and all day long she announced it to anyone who would listen. "Today my dada birthday!" she shouted again and again. She took my cheeks in her hands and made me look at her. "It Dada's birthday!" she said seriously. "Soon my birthday too!" she added. Not until September, I reminder her. "September," she repeated. "That's soon." We've been having actual conversations that go beyond singing happy birthday or needing to pee or wanting a cookie. We talk about all the things we have to do and the order in which we'll do them. Like today in the town library, she crawled into the bathroom with me at her heels and instead of letting me get her up on the seat, she sat on the stool and said "First, you pee. And then, I go pee. And then Daddy go pee. And then Bee." She counted us off on her fingers as she spoke. In a coffee shop, a stranger asked how old she was. She surprised me by answering "almost four," instead of three. These are complex, sequential thoughts that even two weeks ago she couldn't articulate. Her language is suddenly peppered with colloquialisms which make me chuckle. I asked her if she wanted pasta for dinner. "Ummmm," she deliberated, "I think, nope." And then a second later, she reconsidered. "I think, yep." Normally sounding like an Eastern European immigrant, she began to use pronouns, articles and other words to more fully form her sentences this week. "That's she toast," she tried, referring to her sister's breakfast. And she must have said "I want to sit your lap," six million times this week, instead of last week's "I want sit lap." 

We don't use sign language in our family because her speech therapists feel she can articulate well enough without it but I taught both her and her sister the sign for "I love you" so we can have a secret way of communicating the sentiment when we are somehow out of earshot or in need of some extra love. Her fingers, so weak and unable to function independently of their neighbors, have not been able to sign this back to me but this week I caught her trying when I wasn't looking, holding her left middle and ring fingers down with her right hand, while she whispered "I love you," over and over to herself. How cool is that?

Best of all, while there have been some tears this week, I have noticed that her ability to self-soothe is finally emerging and getting stronger. Multiple times, she was able to stop crying long enough able to express frustration, tiredness, pain or hunger so that we could help her solve her problems. She was able to calm herself sufficiently enough to listen to our questions and tell us when she wanted to play longer at something, stop playing something, stay somewhere, leave somewhere, eat more, eat less, walk, crawl, pee, poop, get ice or a band-aid for a boo-boo or just have a hug or a kiss from mama. 

Being around her has been like hearing a loud, week-long click. And for that reason more than any other, I am sad to leave this place. Tomorrow we go back to the world we left for one glorious week; back to the work I already miss, the preschool Bee is about to graduate from, the therapies Teeny needs so desperately. But we'll all go back a little different than when we left.

Sunday, May 31, 2015