Wednesday, September 24, 2014

FOR TEENY, WHO HAS PLENTY OF TIME


To my beautiful, courageous, determined Teeny on your third birthday:

This week I spent some time researching elementary schools for you. I know you are just starting at your current school, but you know I'm a planner and I like to do my homework. It was ultimately an exercise in futility, but a happy one. I realized I just couldn't know how much you will grow and where you will be in two years. You could be anywhere, doing anything! Today in the hallway at your school, someone I didn't know stopped me to tell me how smart you are. "You know," she began, while I wondered who she was and how she knew you, "she's bright and engaged and cognitively right where she's supposed to be," she said. "I can tell. She just needs a little help is all." I beamed. Because really, who doesn't need a little help? Reading about schools, I tried to imagine you at five or six. I pictured you in elementary school, learning to read. Doing math. Studying history. Making shoebox dioramas. Walking. Baking cookies with your sister and me. Whatever kids do. Someday, you will do all those things, and more. I know it.

Two years ago Daddy and I were just learning about your neurology. We were scared and sad and we just didn't know what it was all going to mean for you and for us. But you were unfazed. You did what no one thought you could do: everything. You rolled over. You sat up. You huffed and you puffed and you pulled yourself to a stand. You said Mama. Dada. Bee. And now, on your third birthday, you're in school. People ask you how old you are and you shout "three!" You count, you sing the ABCs. You like to do everything yourself. "I do it!" you say a thousand times a day. You climb all over everything, trying your best to walk. One day, you will. You speak in sentences and you always say please and thank you. You ask questions that start with what and why. You laugh with us, chiding "be nice!" when we run out of patience or get silly. You're constantly announcing "have to pee!" and every time, we all stop what we're doing and hurry you to the potty. Some of the time you don't even have to go. You just like to sit there with us and have us read potty books to you. You smile wide and hand me Time to Pee or Everyone Poops and I know I've been had. But you're having fun! Nowadays, your language expresses more than just wants and needs. We hear you interject "oh wow!" and "awww, silly Mama!" and "oh no!" into conversations and we know that you're listening and we know that you get it.

Daddy and I stayed up late last night, baking cookies and cupcakes for your school birthday party, talking about how magical you are. You are our guide, our teacher, our shining star. Your daddy always says that you might look like him but you have my determination. I am not sure that's true. Yes, I'm a hard worker and I have tenacity. Just like you. Yes, I get things done. Just like you. He may never tell you this, but your daddy is a tough cookie too. He is a survivor. He's been through more adversity than most people and he has somehow found the will to turn his challenges into opportunities. Opportunities to learn, to change, to live his life to the fullest. He keeps going and keeps growing.  Just like you. So it's in your blood; it's your nature to fight. But you have a spirit that is unique. You're a fighter, yes, but you don't flail. You just do. Sometimes your life is hard. Sometimes it's really, really hard. But this is the only life you know. You are just you -- and you love being you.

Today you are so in love with life. From the moment you wake up until the moment you conk out at night, your life is full and wondrous. Your eyes widen and you gasp with excitement a hundred times a day. You worship your big sister. You love cupcakes. The potty. Your My Little Pony collection. Queen Elsa. Singing and dancing. Books. Hugs and kisses and nibbles. Mama. The school bus, which you look forward to with an impatience I just don't understand. You love school, the park, the pool at the Y, taking baths, even pushing your wheelchair. You just started adaptive ballet and you can't get enough of your fancy tutu and ballet shoes. You are beloved by so many. Never in my life did I think we would have such a well-attended birthday party for a three-year-old. People came in hordes: your first teacher, your old school's director, your past therapists, your family, your friends, and a lot of people who just love you to pieces. No one could get enough of you and you loved being passed from one person to the next, soaking up the attention. You haven't even been at school for a month, and everyone knows your name. "Oh, you're Teeny's mom?" someone will exclaim without me even opening my mouth. "She's the cutest thing ever!" they will gush, and share some sweet anecdote about you pushing the elevator button every morning or getting people's names right by the third day of school or getting an ice pack after bumping your head and announcing that you're all better.  "She's already the mayor of the school," someone else pronounced, in the second week of September when you'd been there just over a week. People adore you. Simply put, you sparkle.

This week someone explained to me that there is a correlation between the cultivation of gratitude and the ability to problem solve. Apparently both concepts live in the same area of the brain. Until you came, I lived my life feeling very entitled and angry. I deserved this, I was owed that. I worked hard for things and felt robbed when I didn't get them. It never occurred to me that I might already have everything I needed and more. Right around the time that you came, I started to understand how fortunate I was. I am married to the love of my life! I am the mother of two incredible children! I have the best job in the world! I have so many wonderful people in my life! And slowly, the anger and resentment began to fade and it was replaced with a willingness to share my feelings, ask for help and embrace the abundance of love and support that began to come our way. And I realized there was a lot I could do to help get you what you needed, so as I have written about time and time again, I got busy.

Maybe I will always be sad that you were not given the same chance that your sister got. Maybe I will never understand why or how it happened. Maybe I will always be tired, maybe the list of calls to make, appointments to schedule, and bills to pay will never end. But I'm not sure any of that matters anymore. I am so proud to be your mama. I can't think of anywhere else I would rather be in the world than right beside you. I am so grateful for you -- you, exactly the way you are. And we have so much time. There is no rush. You will get there when you get there and you are living every moment in the fullest color. You are like Milo of The Phantom Tollbooth, my favorite character in my favorite book. His adventure began with a gift and a note: FOR MILO, WHO HAS PLENTY OF TIME. As he went on his quest to rescue the princesses of Sweet Rhyme and Pure Reason, everyone he met along the way said there was one very important thing about it that they couldn't tell him until he got back. When he finally returned safely, there was a huge celebration in all the land. The kings quietly reminded him of what they'd said at the very beginning.

"I remember," said Milo eagerly. "Tell me now."
"It was impossible," said the king, looking at the Mathemagician.
"Completely impossible," said the Mathemagician, looking at the king.
"Yes indeed," they repeated together; "but if we'd told you then, you might not have gone--and, as you've discovered, so many things are possible just as long as you don't know they're impossible."

So, happy third birthday to you, my beautiful daughter, my love, my light, my inspiration. May you have plenty of time. And may your life be full of possible.
I love you.
Mama



Thursday, July 3, 2014

In the Morning of the Magicians



I yelled at my daughter today. I mean, I really yelled.

Generally speaking, I am a pretty gentle disciplinarian and it takes a lot for me to lose my cool. I believe in talking to my kids and being affectionate and loving with them, even when I'm seething. I do this because I want to build trust, not instill fear, and luckily it has worked well for our family so far. 

It's really not a big deal that this morning I had to be somewhere smack in the middle of when we're usually taking the girls to their schools. That happens. But instead of asking Johnny to handle the kids by himself like I usually do when I have an early morning obligation, I tried to figure out exactly who had to be where by when so that I could do absolutely everything. I planned it down to the minute. Looking back, it was pretty unrealistic of me to think that we'd be able to make that work. Especially since we got up at the same time as usual, drank our coffee sitting around the table like usual, had the same amount of breakfasts and lunches to prepare as usual, and so on. I know, I know, there are a million things I could have done differently or prepared the night before. But we didn't do them. I didn't plan well. I wanted to do it all and be perfect at it.

When we were finally ready, we were already late. And if I hate when my kids are late for school, I hate even more when I'm late for an appointment or a meeting. So we were scrambling and I was stressed. I was grabbing things I needed but hadn't yet packed: keys, phone, earbuds. Oh wait, I need my water bottle. Okay I'm ready. Let's go. Oh, wait, I forgot my wallet too. And oy, my hair! Just one second. And so on. Johnny was tapping his foot and rolling his eyes at me, and Freyja was beckoning me to the doorway, murmuring "Mama, come!" And in the middle of this, Bee announced "Mama, I'm not comfortable in this outfit." Again.

The first time she said this, about fifteen minutes earlier, both Johnny and I had tried to reassure her that she looked great. I'd launched into my almost-daily speech about how she's beautiful no matter what she's wearing. I usually joke that she could wear a towel or a paper bag and still be beautiful and she usually laughs and says "What about if I wore my pajamas? Or one of Daddy's t-shirts?" and we get sillier and sillier, collapsing into giggles. Not today. She had been wearing a pink hand-me-down tennis dress and I had thought she was as cute as a button. More importantly for me at that moment, she had been dressed and ready to go. The end. But before I had even replied, she was in her underwear again. She had been very specific that she wanted to wear her blue tank top. The only trouble is that she doesn't own a blue tank top. So we had gone through everything in her shirt drawer and I had pulled out a few alternatives. She had selected a striped tank and had been happy with that and the shorts I'd grabbed to go with it. Then as I was collecting my keys and phone and wallet and water bottle, discombobulated and rushed, I noticed her standing there, staring at me. "Mama, I'm not comfortable in this outfit either. I want to wear the other tank top." I sighed. And then, even though I knew better, I said the worst thing I could possibly say in this situation. "Bee, we don't have time. Can't you just wear it tomorrow?"

She balled up her fists and got red in her face. "No!" And it was on. Out of nowhere, a full-on, all-out tantrum. By this time, Johnny had put Teeny down and closed the door. We weren't going anywhere. Teeny started crying too, stressed that her sister was so upset. I was falling apart. Bee tugged on my sleeve. I whirled around. "What!?" I demanded. She begged through her tears to change her clothes again because she didn't like what she picked the second time. She said again that she didn't feel comfortable and I leaned into her face. "YOU KNOW WHAT?" I screamed. "I DON'T CARE!" 

Bee crumpled, sobbing hysterically. Any hope of making my appointment on time was gone, but it didn't matter. I had made my baby cry. I knelt and hugged her. "Bee, I'm sorry," I said. "I love you and I should not have talked to you that way. Let's go change." She took my hand and in five minutes it was over and we were in the car, on our way. 

She was all smiles until she asked why we weren't doing what we planned. She didn't understand why she was going to school first instead of dropping me at my appointment. "Remember when I got really upset because you wanted to change your clothes again?" I reminded her gently. She nodded. "Well, I got really mad not because of you but because we were late and I didn't want to miss the appointment. Changing your clothes again took time I didn't want to take, and now I'm not going to my appointment because I'm too late for it." Her eyes got big and she nodded again. "Ohhhh," she said in a soft voice. "I'm sorry, Mama." I blew her a kiss and told her everything was fine. She smiled and said "You're my best Mama. I love you." And it was over.

The part I didn't tell her is that inside I was still a mess. A mess because I was late and I missed my appointment. A mess because I hate when I make a plan that doesn't go exactly the way I think it should. A mess because I am a gentle parent who lost her shit and I felt tremendous guilt and insecurity about how to handle the situation and make it right. And mostly, I was a mess because I was afraid she learned this from me. How many mornings has she seen me standing in front of the mirror saying "I hate the way I look in this outfit" as I change what I'm wearing yet again, the self-loathing mounting until I can barely stand to look at myself? Countless times, that's how many. I don't want her to have the same hateful inner voice that I have. I'd hoped that me telling her how beautiful she is no matter what she wears would be enough like it is most days. But it wasn't, just like it isn't when my husband eyes me in the mirror as I'm picking myself apart and tells me how good I look. "Uggggh!" I will sputter in exasperation, stripping off whatever he just approved of. I have been so crippled by my inability to choose an outfit and feel good in it that I have sometimes been late for the very event I am dressing for. I've even thrown tantrums myself, sitting on my bed in my underwear, surrounded by clothes I think I hate, convinced I am too fat to be out in public. Stupid. It's just so stupid.

I realize Bee's behavior isn't all about me and my horrible influence. I really do get that she's four and a half and that this sort of thing is more or less age appropriate behavior. I have heard stories about four-year-olds who wear the same Batman shirt every day for months despite their parents' protests, only to wake up one morning and fling it across the room, refusing to wear it ever again. Bee has been dressing herself for months and when I worry that she doesn't match or look well put together, I remember all the kids in her classroom I see in all kinds of crazily put together outfits every day. When I come home from work, she's rarely wearing what she had on when I brought her to school. Most of the time this is fun for her. She loves to dress up. But other times I think it can be fairly painful for her. I know that there is very little about a preschooler's life that they can control. And I know food, sleep and clothes are just some examples of how they exert their control in tiny ways. Bee is a well-adjusted kid whose tantrums are few and far between, and when they surface they are always related to one or the other of these and nine times out of ten they happen when I'm in a hurry to get somewhere. I swear it's as if saying "Let's go, we're late" is the magic spell to turn a dawdling four-year-old kid into a veritable bag of cement.

She does this when we're going to a restaurant. She gets excited about the food, the company, the newness. We study the menu together and I get her to agree to try X dish. It arrives and she instantly pushes the plate away. It's not what she thought it would be and in a flash, she refuses to even try it, and I'm cranky because I ordered and have to pay for something no one is going to eat. I've since learned to feed her first, or pack a snack. She does this at bedtime. She played the nightly I'M NOT TIRED game followed by the BUT I DON'T HAVE TO PEE game until we got into a game-changing groove. Now we have a new ritual: I fill her heart with kisses and she fills mine. We make ding noises when we're full of love and that seems to be exactly what she needs to conk out quickly and effortlessly. And similarly, she does this with her ridiculous and stubborn insistence on wearing at all times possible her cheap-ass H&M Hello Kitty flats. I hate them and regret ever buying them but she loves them because they make her feel like a princess. She wants to wear them all the time. All. The. Time. I realized she was going to argue with me about this every time I said no. Maybe this was a battle not worth fighting? Now I let her wear them pretty much anytime she wants. On the occasions I say no because she's riding her bike or going to the playground, she asks to put them in her backpack to change into afterward. She will bring them to playdates and to overnights at Nana's. And I don't care anymore. I stopped caring. What difference does it make if she wears shoes I don't like? Does it hurt me to send her to school in shoes that make her happy?

So why didn't I think about all of that this morning? After I raised my voice, I gave in anyway and let her change. That is something that one the one hand I'm not proud of because I prefer to be consistent the whole way through and I can't help but think that was like giving her a clear message that tantrums work and that she'll get her way if she just argues hard enough and wears me down. But on the other hand, who really cares if she changes three times? I was tired of fighting. I know I would have saved the rest of the family tears and aggravation if I'd just let her change again when she asked. Instead, I had a meltdown that topped her meltdown. And when I heard myself scream the way I did, I looked up at Teeny waiting at the door in Johnny's arms and saw she had her fingers in her ears. I felt a thousand times worse. 

The lesson for me here isn't that I have to flog myself into being a perfect parent. I'm not one, and I can't become one. This morning was not the first time I raised my voice, and it won't be the last. I know I can't just vow never to yell at my kids again. I also can't commit to being able to let go of all my body-image garbage, much as I would like to. I try, especially because I am very conscious of being the mother of two daughters in a society that is not kind to girls and young women who don't fit a particular mold. I want my girls to grow up with healthy self-esteem and a positive body image. I want to give them the tools they need to develop into brave and confident women. And of course I don't want to model the opposite for them, hating what I see every time I look in the mirror at my big butt or my greying hair or the wrinkles I keep seeing appear on my face and wondering when I'm going to wake up six feet tall, skinny and 25. 

The moral of this story is that I am imperfect in general. My big butt, my greying hair, my wrinkles, the volume of my voice, my instinctive desire to fix and to plan and to get it all right and get it all done. I set myself up to fail by trying to make the impossible happen this morning and I let Bee take the brunt of my frustration. I couldn't work the magic I planned to by adding the proverbial straw that broke the camel's back into an already packed morning, and I took it out on her. Maybe it's just that I need to admit that mornings are not our best time. Maybe my schedule is still too full. Maybe I am mentally taxed enough by two kids and a full-time job and blah blah blah to try to add anything else to my plate -- however small -- without ensuring that something else comes off. Maybe it's saying yes to Bee's silly requests more because I am the kind of parent who wants to say yes whenever I can. And maybe it's saying no to everything else more often because I just can't handle another thing if I want to move through my day being the best version of myself that I can be. Maybe accepting my imperfection in all its ugly glory is the best -- and the hardest -- thing I can do as a parent. 




Monday, June 23, 2014

ABC, IEP, CPSE, it's easy as 1-2-3



More than a year ago, I wrote a blog entry about how we decided to enroll Teeny in a part-time preschool. I was so scared, I don't think I slept for a month. But a few months later, I was writing another one about how great she did. She took so well to school that we saw immediate improvements in so many areas.




About three months into the year, the learning specialist who consults at her school mentioned to us that yes, Teeny was doing spectacularly, but she might do even more spectacularly at a school that was better equipped to address her many needs. She mentioned a particular school to us -- School A -- that was well-known nationwide and which had an integrated preschool program. (Side note: integrated means that the student body consists of both general education kids and kids with IEPs. Side-side note: An IEP, for those not in the know, is an Individualized Education Plan, and the way a child's special needs are addressed is outlined in that child's IEP.) This sounded magical to us because while Teeny learns well from her peers and we absolutely love love loved the school she was currently in, we didn’t want her to be the only child struggling. So we decided to learn more about that school.

We fell in love with School A's incredible resources, their well-documented experience and their interest in Teeny. Best of all, we loved the chance for Teeny to have her therapies in school, for her therapists to be part of a team in one location, and for her to be among other children who struggle with disabilities. And it didn’t hurt that if she were accepted there and the DOE mandated a program like the one they offered, the state would pay the tuition, saving us many, many thousands of dollars. We submitted our application, feeling pretty confident. We were told that if they planned to offer Teeny a spot, they would hold it until her IEP meeting mandated that an integrated program was right for her. But we didn't have an IEP meeting. We didn't have the evaluation process started or even scheduled for that matter. So there was a lot left up in the air, but the school seemed sure it would work out, so I didn't question anything.

At the same time, another someone suggested we look at other schools with integrated programs just to do our homework thoroughly. We found one other (School B) that looked fantastic, and the director was polite on the phone when I called her last November, but she wouldn't answer my questions or schedule a tour. She explained that her school followed a different application timeline than School A and they didn't tour parents or even really talk to them until after the IEP meeting. They only wanted to meet with families whose children had the mandate to attend a school like theirs.

School A agreed to handle Teeny's CPSE evaluations. I took this as a sign that we were in. We went through the whole process in about four weeks and the coordinator called me to schedule the feedback meeting, which, she explained to me, was for us to discuss the psychologist's report and their overall recommendation. I'd already read the reports myself. What more could there be to discuss?

We showed up at the meeting not knowing what to expect, but I knew exactly what not to expect. We were not expecting to hear from the admissions director of the school for another week, and our IEP meeting wasn't scheduled until the week after that. A week earlier, Teeny had had her playdate at School A, which couldn’t have gone better if we’d scripted the whole hour ourselves. I was confident they'd want her! So I was pretty shocked when everyone in the room was shifty-eyed, exchanging glances with each other but avoiding my gaze. It was pretty clear that they all knew something that Johnny and I didn't. The psychologist breezed in ten minutes late and the meeting got started, but I barely heard a word he said. I was sweating. The tension was palpable. I waited for the meeting to be over, and someone looked at me and swallowed hard. Before she even spoke, I knew. Teeny was not going to be accepted at School A.

I met with the admissions director a few days later to find out more. She was sweet and friendly and I couldn't help but like her. She explained that they loved Teeny and thought she would be a great fit, but that there were only two spots this year. Teeny was the third child on the list after two who were either siblings of current students or employees' children. She promised me that if anyone pulled out, we would get a space and that no matter what, there would be room for Teeny next year, should we want to move her from wherever she ended up. She answered all my questions and was kind and generous with her time. And yet my heart was in my throat. It didn’t matter to me how nice she was or much she loved Teeny if the school didn’t want her. It was already late May and it felt to me like time was running out. What was I going to do? 

Walking home, I suddenly remembered School B. I'd forgotten about them because of my (one-sided) love affair with School A but it was time to open up the relationship and explore other options. I called the director as I crossed 125th Street and got her voicemail. I knew she would not want to talk to us until we had our IEP but I had no time to lose. I was panicked. So I got busy.

I want to document what happened in the next few days because this was one of the scariest times I’ve had so far as a parent. If writing the details of what we went through helps one other family trying to navigate the special needs preschool system in New York City, I will be thrilled. The whole thing sucked for us even though we ultimately had a very positive outcome. When you think there is no appropriate place for your kid, you feel judged and you feel alone. You're afraid for your kid and you're afraid for yourself. No one gets what you're going through. And worst of all, there's nothing you can do. Nothing at all. You and your kid are ultimately at the hands of the DOE and the school administrators and you feel pathetic but you you end up essentially begging them to like you. Again, things worked well for us but at this point I felt like we were stuck between a rock and a hard place and nothing would get better. I couldn't get dramatic images of turn-of-the-century insane asylums out of my head. I imagined the worst: Teeny being placed in a school whose halls were lined with twisted-limbed, pinheaded people moaning and drooling and wandering aimlessly up and down the halls. How could I let the DOE send Teeny to a school like that? It was horrible. So if the process can suck a little bit less for you because of our experience, the time it took to write this all down will have been worth it to me.

So there I was, totally panicked. As if I didn't have enough on my mind, I now started to worry about the IEP meeting, which at this point was just a few days away. What if the DOE didn’t think School B would work for Teeny and instead placed her somewhere terrible? What if they didn’t give her enough therapies? We didn’t have a lawyer, and I had no idea what to expect. Everyone kept asking who our assigned DOE administrator was and when I told them, they’d smile and say “You’re SO lucky. He’s one-of-a-kind.” But still, I was scared to death. I had always been accepted at every school I ever applied to. How could this be happening? Years ago, I had applied to Harvard, Yale, Penn and U Chicago and gotten into them all. How could it be harder for a two year old to get into Schools A and B? I didn't understand why this was so hard, and I didn't believe anyone when they said it would get better.

Someone suggested I call a consultant. It turns out there are people who work as very high-priced consultants to New York City parents of special needs preschoolers to help them get into a school. It’s that cutthroat. One consultant in particular, S, offers a free half-hour phone call before the meter starts running. I was sure I’d get her voicemail, so I tried her while I was riding my bike down Broadway on my way into the office the next morning. She picked up on the first ring and started talking right away. I was so surprised that I almost slammed into a truck double parked in the bike lane. Out of the corner of my eye I saw the truck driver give me the finger, which I totally deserved but was too captivated to acknowledge. Ignoring him, I sat down on the sidewalk. I got out a notebook to take notes on everything she said. This woman was incredible. She talked quickly and didn't mince words, wasting no time and diving right in. She told me I was well researched, and she also told me I probably wasn’t going to need her services. She did a few very important things for me in that half hour. First, she told me that no one ever gets into School A, so I should not take our experience personally at all. She told me that School B was similar and we had to be realistic about our chances there too. She ran through all the other schools that could be viable options for Teeny and we talked about their pros and cons. S gave me the names of the administrators at each school and a little information about each of them. She shared some extremely valuable language to use when talking to them, and she walked me through what might happen at the IEP meeting. When she heard who our administrator would be, she gushed. “You’re so lucky! Oh, you’re not going to have any trouble.” At the end of our time she said she'd happily take my money if I wanted to work more with her but assured me we were not going to need her right now, so best of all, she gave me hope.





That day, I made a million phone calls. I talked to the admissions director of every single preschool in Manhattan that works with kids with IEPs and made appointments to see the ones I thought we’d like most. I wrote up a list of pros and cons of each school and quizzed Johnny relentlessly on what was most important to him in a school and why, and then picked apart his answers until he told me just to decide myself. I emailed everyone I knew with a special needs kid and scheduled  calls to interrogate friends of friends with kids who attend or attended any of the schools on our list just to hear their experiences. I researched a whole host of schools outside the city as well, which had me looking into real estate in Westchester and Connecticut just in case. In my mind, we moved all over the tri-state area in the course of one single evening. Then I printed out and read whatever documents on CPSE I could find. I learned what a "12" classroom is and an "8" and the difference between a 12:1:2 and 12:1:3 and why a self-contained classroom could be better for Teeny than an integrated classroom. I learned that if you sign the IEP in one place, you got a 10-month program and if you sign in two places, you've been given a 12-month  program. And best of all, School B called me back in the middle of all this and said that if the DOE administrator felt Teeny was a good fit for them, there would be a space for her. So now there was a lot riding on this meeting.

Two days later we had the IEP meeting. We dropped the girls off at school and headed over. I was dressed casually, but not too casually. In one hand I held my coffee and in the other I carried the binder I had put together at a friend’s recommendation. The binder was fat with a packet of adorable photos of Teeny I had printed, multiple copies of her therapeutic evaluations, letters from her medical team, prescriptions and other documents I’d printed out about CPSE, the IEP meeting, the various schools, and so on. It was white with a clear plastic cover into which I slipped the cutest of the photos and a name tag with TEENY printed on it. And I’m so glad I did this. It’s the first thing I would recommend to anyone going through this process. Get yourself a binder like this. Be prepared.

We waited nervously in the waiting area where we were joined by Teeny’s EI service coordinator, the CPSE coordinator from School A and the learning specialist affiliated with Teeny’s current preschool. The waiting area had a few plants and some cheap but brightly colored posters from the Metropolitan Museum of Art on the walls. This was a huge improvement over the barren and lifeless Department of Health offices that house the Early Intervention program but it didn't do a thing to cheer up the sour, depressed staff members we saw: cranky, hating their jobs, hunched over their smartphones, ignoring their surroundings. 

Our assigned DOE administrator, M, fetched us and made small talk as we followed him down a hall and up a flight of stairs to a tiny office, maybe six feet wide and ten feet long that was mostly conference table. He squeezed into the far corner and pointed to a purple visitor chair opposite him. “Mom sits in the purple chair,” he said, with a nod in my direction. I sat.

M was serious. He opened the meeting with very formal language. He noted the date, the time, the address, and that we were convening to discuss the IEP of our Teeny. He asked me to confirm the pronunciation of her name. "TEE-ny," I repeated for him, and wondered vaguely if the meeting was being recorded. M turned his attention from the paperwork and looked up at us. He asked each of us to describe her in detail, and we did. He asked the learning specialist to describe Teeny's learning, and then it was our CPSE coordinator's turn to summarize all her evaluations and her classroom observations. He nodded a lot and scribbled lots of notes. His questions were pointed, his comments accurate and I could tell that he had already carefully read all of the paperwork I'd sent him. I was impressed; this guy was prepared. Still, it was uncomfortable. I was scared and didn't know what to say or do next. I took a lot of notes too. There were pauses. Uncomfortable silences. At points I babbled helplessly, wanting to make Teeny as real and three dimensional as possible. M asked to see pictures and I had them ready. His eyes lit up. "She's adorable," he said, and I believe he meant it.

Soon it was our turn to listen. I held my breath with anticipation. M put down his pen and cleared his throat.  My whole body was tense. I was almost afraid to breathe. First, M deemed Teeny a preschooler with a disability. He summarized all we'd described and all he'd read and he said that in his opinion, Teeny would do better in a self-contained class of 12:1:2 next year than she would in an integrated setting, but depending on how she does, there is the option of moving her into integrated after a year. He said he wanted to see her have the maximum related services (meaning that she would get her PT, OT and speech each three times per week, or the maximum the school offered). It gets better. He also awarded her a full-time paraprofessional to assist her with mobility. This was something I didn't even think of asking for. I was speechless and afraid I might cry. He talked about her commute; she'd be taking a bus and he wanted to make sure that it wouldn't be more than one air conditioned  hour each way so he added that to the IEP document. He explained that Teeny would need a wheelchair to manage the lift. As we discussed this, I had a question about how she would get on and off the bus. "Hmm, I'm not sure," he said. He picked up the phone and dialed School B. "I'll find out for you."  The director was with another family and couldn't come to the phone, but he left a message. I told him I had been calling her but hadn't heard back in forever. M laughed that a call from him worked like the bat phone, assuring me she'd call him back momentarily. 

"So, School B?" I began. He nodded and said that School B would be a great fit for Teeny's needs. We all exchanged glances around the stuffy little room. What? Just like that? Could such an incredible victory really have been this easy? I half expected him to wink and shoot a forefinger at me, saying "Heh, you actually thought I was going to give you all that? Yeah, right!" But no. This was real. And M kept going. He had us sign another form that protects her EI services through the end of the year just in case there was some issue with her transition or with the school itself that would prevent her from getting her services through CPSE.

"Wait," I stuttered. I knew I had been right, it was too good to be true. "What do you mean, a problem with the school? You mean they might not take her?"

"No, no," he smiled. "It's my job to protect Teeny's services no matter what happens. This is just in case of some totally unlikely event, like if School B burns down. I have to make sure the child is protected in case another part of the system should fail. It's my job to ensure that the Department of Education is providing the very best services for her that it can." 

We signed a lot of papers (in two places, not one), I offered him copies of Teeny's therapy prescriptions from my binder (which he took, thanking me and noting with a smile that my binder was fabulous and that I was exceptionally well organized) and we began to wrap up. He recommended that we check out a couple of schools to make absolutely certain that School B was the one for us. He explained that this IEP was still a draft, pending our input once we'd seen the schools. He told us that we could change anything we wanted, that he was always available to us via phone, email and scheduled meeting, and that if she needed more services to just let him know. He reminded us that the DOE would be paying for all of her educational expenses (although that part I had most definitely NOT forgotten) and explained the rest of the process, letting us know we'd meet at least yearly (more if we needed to) and that  he would help us as we transitioned to CSE, the next stage of special ed. Then he gave me our copies of everything, shook our hands and walked us back to the elevator. And that was it.

Out on the street, we all squealed. Omigod! I screeched. Could this be real? Here was a man of integrity, working for the DOE. A lone island in a sea of disconnect and disengagement. I don't believe in angels but I sure felt like I'd just spent the last hour with one. Everyone was smiling and laughing and congratulating each other. The more experienced members of our team talked about how M really was a rare breed. We were truly lucky; other families they knew had struggled much more in their meetings. And then someone said "By the way, did you know that you were assigned to him just because you live in district 5 and your last name starts with C?"

Whoa. I was grateful, to be sure, but my heart broke a little for all the children whose last names do not start with C or live in our school district. Not every child who needs a spot like the one Teeny was given at School B will get one, and in fact most will not. I was sad for all the others, the nameless and faceless not-Teenys and their parents who might be feeling fear and intimidation where today I was feeling relief and elation. Until I remembered that School B still had to accept her.

It was an agonizing two weeks before we were able to tour the school and meet with the administrators. We liked the school but feared the admissions director's impermeable poker face. I wondered if she ever cracked a smile. She was dry and formal and very by the books. I was terrified that she hated us; I must have said something wrong, or maybe Teeny just wasn't charming enough. Once I got home, I called every remotely connected "inside source" I had and grilled them about what they thought would happen. No one had any real answers and the director was not calling me back. Time was passing. We checked out the other schools M suggested we see and none was a viable option. I was in agony and I started to feel very, very discouraged. Days passed.

A week into our family vacation earlier this month, the call we've been waiting for finally came. I almost didn't bother answering the phone when I heard it ring because I was on vacation after all, but then I noticed that the number was local to our hometown and not pre-programmed into my contacts. I snatched the phone and answered on the fifth ring.

"We'd be delighted to have Teeny join our school in September." And with that, the application process was over. She's in! Now I can focus on getting Bee into kindergarten. It never ends.

 

Tuesday, April 29, 2014

And One Thought Crystallizes Like An Icy Blast

It’s the end of April and finally spring seems to be here. No more heavy coats, no more hats and gloves and scarves and layers. Teeny is excited! She asks for her sunglasses more and more (“Glasses! Glasses! On!”), and she wants to take off the hoodie she has been wearing for the last six months (“Off, off!” she will say, tugging it away from her body). She wants her window in the car open. (“Op-ee. More op-ee.”) She points to birds and flowers and leaves, naming them all. In the playground, she is learning to swing, something she once hated, and to slide down the slide.



This was a really rough winter for everyone; our family was no exception. It feels like one or more of us has been sick since preschool started back in September, and unfortunately it’s been Teeny most of the time. For a while her appetite was pretty inconsistent, and as a result, her weight has fluctuated a bit and is now back on the very low side. She’s on the smaller end of the chart for height (14%) but right now her weight doesn’t even register. I know the growth charts are imperfect and not really a measure of anything, but it’s useful for me to measure her growth against itself. When I see her measuring at less than a percent I can't help but worry. She generally eats well (if messily), she doesn’t look emaciated and her weight isn’t a concern to her medical team. And no one else seems to notice; everyone else just sees her as very tall and thin like Johnny when really she is neither. I work to sneak in avocado by the halves and almond butter by the spoonful; hopefully this will pay off and she'll start packing on the pounds at some point.

All the same, she’s still growing well. Last month after seeing too much wrist poking out of a long-sleeved shirt, I went through the girls’ room one day and cleaned out all the 18 – 24 month sized clothing and even some of the 2Ts. With no other children to save them for, I sorted them and got them ready to pass on. I got oddly weepy folding the last of Teeny’s outgrown baby things. I got lost in memories. You know, from Before We Knew.

I’ve written before about how my life as a parent seems to be divided into Before The MRI Results and After. I will never forget that heart-stopping day in November 2012 when we found out. For a brief period, I feared I might never be able to love my own child, all because I didn’t ask for this. We had another such moment recently. I finally got an email from the office of a neurological geneticist who studies brain malformations and their causes. He reviewed Teeny’s MRI scans and concluded that she has pontocerebellar hypoplasia (PCH) after all; months ago he thought it was some other, even rarer malformation that made no sense to anyone I mentioned it to. This latest was not good news. I read his email in disbelief. Again I thought, I didn't ask for this! I do not want it to be PCH. I really really really do not. When his hypothesis was something no one had ever heard of, it was easy for me to think he was way off the mark and to just disregard his input altogether. Deep in my heart I don't agree with him this time either, but of course we want answers. So we paid another fee, signed some more paperwork and gave him access to the genetic data so he could review it himself. And once again, we wait.

I'm no neurologist or geneticist, but I do my homework and I can tell you that the genetic disorder pontocerebellar hypoplasia (PCH) has a clinical spectrum associated with it that Teeny simply does not have. Nearly every kid whose family I’ve been in contact with has even more severely limited motor ability than she does, gets nutrition via a g-tube, communicates via blinking or via assistive technology, and so on. Many of them have dysmorphic features: one crease on their palms instead of two or more, low set ears, a high-arch palate and others. There appear to be six known types of PCH and they are all devastating to read about; rarely do children diagnosed with most forms of PCH live beyond infancy or early childhood and those who do have very significant and global delays. But I am not an expert so of course I could be wrong about Teeny. But it doesn't ultimately matter what she has. Does it?

Teeny is now two and a half and all things considered, she lives a pretty charmed life. Still, she knows she’s not like everyone else and it is frustrating for her. Her therapists and her teachers now observe what Johnny and I see more and more: she gets mad when she can’t do things that other people can. She’s no longer content bouncing on her butt on the bed when her sister is jumping up and down like crazy. She doesn’t want to watch Bee active in the playground; she wants to swing and slide and climb on everything too. She loves playing with dolls, but mostly, she makes them walk. She plays with Bee's Wendy figurine all the time. When Bee was in her Peter Pan phase a year or so ago, she made Wendy fly all over the house. Forget flying. Teeny's dream is to walk, so everyone around her walks. “Walking!” she’ll shriek, and as she does, my heart breaks a little. “Wendy, walking!” she repeats, holding Wendy upright and bouncing her up and down across the table. Teeny wants to walk so bad it’s like she can taste it, and it’s hard for me to see her try so hard and make such slow progress. I believe that Teeny has hope. I think she thinks that eventually, she will get there.


And why should she think anything else? Never in my life have I seen someone so loved and so supported. She doesn’t just have friends, she has fans. She has a team of specialists who all root for her. She has therapists who don’t just work with her; they adore her. Everyone who meets her falls a little bit in love with her. It’s easy to do. She gives great hugs and tells people she loves them, and her determination inspires everyone she meets. And I have fallen more in love with her than I ever thought possible. Back when the MRI changed our lives forever, I was almost afraid to love her because I couldn’t stop thinking about her brain and its malformation and how she would never, ever be like other people. Today my love is not limited by her diagnoses. Teeny is more than a label, more than a scary medical term or an ICD-9 code, more than a list of skills she should have but doesn't. In some ways, she is as sharp as a tack. She is my heart, my hope, my determination. Simply put, she is one of my reasons for living. She is my daughter and she is beautiful and -- in the very basest language I know because it’s a totally primal feeling deep inside me -- I fucking love her. 

Here's an example of how with-it she is. Johnny and I rarely fight. He is my best friend and my soulmate and, generally speaking, we get along really well. But this morning, Johnny and I were both cranky and underslept and we started arguing about a miscommunication. Stressed further by rushing to get the girls to school on time, we got careless and raised our voices as we zipped hoodies, gathered backpacks and looked for housekeys. Bee ran away from me and for the first time in her short life, she hid anxiously in her closet. At the same time, I heard a screeching sound. I looked around for Teeny and found her sitting on the floor with her arms folded across her chest. Her brow was furrowed and she was pouting. She was calling out in a high pitched voice. I stopped yelling and stared at her. "What's she doing?" I asked Johnny. "She's imitating us," he said sadly. I caught her eye and she looked away, burying her face in her hands. My heart sank, and at the same time I felt elated. I really couldn't believe it. Sometimes we act as though she isn't 100% present, talking over her and assuming she doesn't always follow what's going on. Of course it's not the way I wanted to be proven wrong, but she showed us in no uncertain terms that she was right there with us and totally aware of and affected by our behavior. I coaxed Bee back out of her closet and over to us. I hugged her, and I picked Teeny up and kissed her cheeks. On top of everything else, I now felt shame. It wasn't fair to involve them in our stupid bickering. Nothing we were arguing about was worth seeing either of them like that. I apologized to Johnny and he apologized to me and we both apologized to our girls. We all held hands. For the first time, we talked to them both about what they saw and made sure they were smiling again before we headed out to start our day.

These days there is a lot of hope. Big stuff is happening. Teeny is always engaged and active. She goes to preschool four mornings a week and, until recently, spent the fifth working on art projects with a respite worker. Every single weekday afternoon she has some kind of therapy and many afternoons she has multiple sessions. She has the busiest schedule of anyone in our family, and by the end of every day, she is exhausted. She doesn’t get wired like Bee does when she’s tired. If we don’t read her signs, she will fall asleep sitting up. So she’s the first in bed every evening and she’s the last to wake every morning. She rarely if ever wakes at night, and she sleeps so soundly that we often have to rouse her. This kid is just plain tuckered out. She works hard.



And there’s always something else on the calendar. A kid with medical issues never goes long between doctors' appointments and we’re always schlepping up to Columbia Medical Center for something or other. This has become a little more routine for us, although I don’t think I will ever be comfortable being the mom of a kid who spends as much time in a children’s hospital as Teeny does. In the past few weeks for example, she’s been casted, measured and fitted for her third pair of leg braces. She had her fourth Botox treatment.The new braces (called DAFOs) have a hinge at the ankle and are a huge improvement over the previous pair. Together, the braces and Botox help her legs so much.




While we adore the mainstream preschool she is at now, we made the decision to apply to a different school for next year. This school has an integrated preschool with a team of therapists on staff and a PT room in the building. If she gets accepted there, she would no longer be the only special needs kid in the classroom. Her teachers would have experience teaching kids with limited mobility. She could have some or even all of her therapies during the school day, which means more time for unstructured play than she currently has (which is essentially none). She could get free busing to and from school. So we went through the harrowing New York City private preschool application process a few months back. Tours, paperwork, interviews. Waiting for the call inviting her for a playdate. The call did come and our playdate is tomorrow; any NYC parent knows it's really a performance and not a playdate at all.

Because she is a special needs child, in order to qualify for this school’s integrated program, the school application process is just the beginning. She has to exit Early Intervention – which provides primarily home-based services via an individualized family service plan (an IFSP, not an IEP)-- six months before she ages out to instead have her services provided by CPSE (the Committee on Preschool Special Education), which is the Board of Ed’s service provider for children ages 3 – 5, which is a whole different ballgame. Even though Teeny is only 2.5, to be accepted at this school, she needs an IEP now that mandates that she receive the kinds of services they provide. And to get that, she has to be recommended for it by the agency that does the evaluations. Lucky for us, the agency doing the CPSE evaluations is run by the school we are applying to.

Somehow with special needs kids, it’s always time for evaluation. Every time we request an increase or change in her services through Early Intervention, she needs to be evaluated (or re-evaluated) in that area. And now that we are entering CPSE, she had to have multiple evaluations in their required space of 20 days. I changed my work schedule around and we set up PT, OT, speech, psychological evaluations as well as a classroom observation and a "social history" (i.e., when someone asks Johnny and me the same 101 questions they always ask about our family, my pregnancy, her birth and all the milestones she has missed since).

I got copies of all the evaluations last week in the mail. I tore the thick envelope open, dove into reading and immediately burst into tears. I had braced myself that they would be harsh and they were. They have to be in order for her to qualify for services. I get that. But no matter how I try to prepare myself, it still hurts to see my child described so clinically. Test scores. Percentiles. Adjusted ages. Lists of things she was not able to do during the testing, lists of things she cannot do at all. And all the while, I’m muttering under my breath. She can so do that, she just didn’t want to. Flipping through one document and the next and the next, my eyes scanning the pages for something different. And then reading the two sentences to end all sentences: “Teeny’s cognitive performance was affected by her significant motor delays that prevent her from being able to accomplish various activities that required free movement, muscle tone and coordination. Teeny’s potential is far greater than she was able to demonstrate on cognitive tasks.”

Oof. 

This described to the letter the thing that frightens me the most. We know she's in there. We believe she is a very smart girl being held back from achieving her fullest potential by her motor difficulties. It feels like we are in a race against time to get her walking and talking and grasping and gripping just so we can unlock her true self. That if we don't do it soon, or find a way to help her make great strides (no pun intended) with her motor skills, she will be locked inside herself forever and just fade away. Like she is a candle that might eventually burn out if we don't do everything we can to keep it lit. It feels like time is running out and we can't afford to waste a single second.

So tomorrow we have the playdate. Next week we have the “feedback meeting,” where we learn whether the agency will recommend an integrated program for her. That same day we have a meeting with Early Intervention to renew her current services for the remainder of her time with them. The week after that we have the IEP meeting. That’s a lot of meetings. And there is nothing I can do to prepare for any of them except show up and be the strong advocate my friends tell me I already am. But there is so very much riding on these next couple of weeks; it’s hard for me not to want to fill up the time between now and then just worrying, as though the amount of time I put in worrying about things beyond my control might win me some amazing prize. Ludicrous, really.

This is a process I’ve been scared of since the day we learned we would eventually have to go through it. I’ve heard IEP meeting horror stories from so many parents. It’s not uncommon for people to pay exorbitant fees to have a lawyer accompany them to the meeting just to be able to threaten a lawsuit if the child is not awarded the services the family believes to be necessary. But we’ve been told that we have a benevolent district coordinator and the agency doing this set of evaluations seems to be a strong advocate for her. Plus, she’s got her dad and she's got me. I might not be much of a tiger mom in my everyday life, when it comes to making sure Teeny gets what she needs, I'm told I can be pretty convincing and persistent.

When I find myself playing the what-if game when it comes to my two favorite things to fret about, the cognitive-ability-and-quality-of-life question and the will-we-be-able-to-adequately-provide-for-her question, I remind myself yet again that she is here now and happy now. She is loved now. She is provided for now. She has everything she needs and a lot of what she wants. We might have a small apartment. She might get mostly hand-me-downs. We might have to fill out financial aid forms forever. But she is surrounded with love. How many neurotypical people can say that? And there’s more. It’s not just that we love her. She loves us. She says so and she shows us with everything she does.

Like many difficult things, having a child with special needs can destroy marriages and lives. People just don’t know what to do. I definitely didn’t. I still don’t. Coming to grips with the fact that there are things in life I just don’t get to know right now has been the hardest part of this whole ride so far and it's still hard. But accepting that I don’t have all the answers has been humbling and it’s helped me in many other parts of my life. It has helped me be a less controlling wife. A more present and coaching supervisor instead of a micromanager. A more relaxed and laid back friend. I’m (slightly) less of a know-it-all, and I’m not so quick to judge and correct. Because we’re all just doing the best we can, aren't we. We all need love and empathy, not judgement and anger. Teeny doesn't make that harder for me. She helps make it easier.

Bee, at age four, is deep into imaginative play and dress up. For the past few months, Frozen kind of took over our lives. We scoured the earth for anything Frozen related for Bee and found an Anna dress, an Elsa dress, the Blu-ray of the movie, the soundtrack, a blue plastic ice castle and the character figurines. Bee pretends she’s Elsa all the time, waving her arms around freezing everything around her and singing Let It Go at the top of her lungs. Now Teeny has slowly and quietly fallen in love with Elsa too. Teeny loves Elsa so much that our little plastic Elsa figurine is often the carrot we use to motivate Teeny to use her walker during therapies.



Teeny has loved to dance for months, and now thanks to that song, she’s singing as well.



And between you and me, I secretly think of Teeny as my little Elsa. A beautiful child born with a special need she didn’t want and can’t control, yearning for love and acceptance; how can you not see the similarities?  

So yes, I got weepy with the evaluations and the baby clothes and the diagnostic email thinking about Before We Knew -- but not because I feel sorry for us. Not because things are so hard. I got weepy the same way I get weepy watching old videos of Bee, a chunky little baby doing a dance more like a stagger, clutching her Mickey Mouse doll and trying to sing along to her favorite song du jour. It's the same kind of weeping you do when you observe the passage of time, just a bittersweet reflection, a mother’s nostalgic they grow up so fast. In many ways, I am like all the rest of you and in many ways my kid is just like yours. She wants to wear Mama's big sunglasses. She wants to know her parents love each other. She’s got a favorite princess. She wants to sing and dance like any two and a half year old girl does. Seeing her caught up in the Elsa-love just like every other girl in the US between the ages of newborn and tween, and I swear to you my cup runneth over. I’ll say it again: I fucking love this kid -- with every ounce of my being. I would die for her a million times over and then I’d die for her again. But I don’t have to; I get to live with her, alongside her. I get to work with her, play with her, sing with her, laugh with her, learn from her. I breathe her in, snuggle her, watch her sleep, hear her say “Mama!” with joy and love every time I walk through the door. She is growing up and there is no before, there is no after. There is only today. As her favorite character in the world would say, It's time to see what I can do, to test the limits and break through! ... The past is in the past. Let it go!


Monday, January 27, 2014

On Double Negatives


Three days ago, Teeny took eight steps by herself in her walker. She was in the middle of a physical therapy session when it happened. While Johnny and Teeny’s physical therapist were talking and not really paying attention, she stood up, held on to the handles of the gait trainer, and walked halfway across the room. And I missed it, because I was at work.

I got calls from both my spouse and the PT, one during the session, one after. Both were rife with emotion. Near tears. Voices shaking. Her physical therapist said, “It was the most incredible thing!” A second later, she added, “And the whole time she was smiling and asking for mama, mama.” I wasn’t sure if she added that just to make me feel better about not being there, but I didn’t care. My kid took steps in the hated, dreaded walker, by herself!


You’ve gotten a lot of good news about Teeny lately. A lot.  But you’re finding it’s hard to be happy, to let it all register. You think you really ought to write a blog entry about it all but you just don’t. It’s one thing to write blog after blog about how horrible everything is and how hard it is to have a special needs kid, all the terrible things you think and how you learn so much about yourself when you’re challenged all the time. But after two years of that, you get used to being this weird sort of martyr, thinking that everything is so hard and no one else really gets it. Despite this, you are blissfully ignorant of your behavior and you tend to think of yourself as a happy person who just hasn’t gotten around to updating the world with your good news. Recently someone you know tells you that you have a chip on your shoulder. “You know that, don’t you?” he says, not unkindly. You start to offer blustery excuses, explaining how hard your life is and how no one understands. But then you stop mid-sentence and look at the person across the table from you. The guy looking back at you has more responsibility on his shoulders than you ever will: work stuff, family stuff. Big stuff that he has shared with you over the few years you’ve known him. And yet he’s taking the time to gently offer you this very valuable information about yourself that no one else has bothered to. You shut your mouth. He was right. It was time for an attitude adjustment.

So you walk around for a couple weeks confused and not knowing where to begin. You alternate feeling lost, unsure of how to let go of your crankypants, and still feeling justified in wearing them because no one else knows how rough you really have it. But then you turn around one day and the kid people thought might never talk is saying well over 100 words and phrases and okay, she’s still behind in speech but she’s really not that behind. She says phrases like I love you and thank you and on top and let’s go and she says them all correctly and she even has one phrase in Arabic, habibi, which means “my queen” or “my beloved” and it’s what the Egyptian garage attendants in your building call her. She calls their names and says habibi every time she sees them and they smile miles wide and hold their arms out for her. And yes, they love our Bee too, but as they twirl and dance with Teeny to the car and she’s laughing and saying habibi, it dawns on you that Teeny is very special to a lot of people, and many of them don’t even know there’s anything “wrong” with her.

And her first semester of preschool comes to an end and you get a glowing and positive report from her teachers about how playful and inquisitive she is and it’s 8 pages of cute stories from the first half of the year. It’s full of compliments and hope and it brings tears to your eyes because it’s the first document you ever read about this kid that wasn’t a laundry list of things she can’t do and problems she has and will likely have for the rest of her life. So you make a PDF of it and send it to every relative and family friend you can think of because you’re so proud.

And then it’s the holidays and you take her on vacation and you forget the bath seat she needs because she falls over in the bathtub and she’s dirty so you stick her in the tub anyway and it turns out she’s totally fine without it. While you weren’t looking, she got really good at balancing, even in the water, even with slippery soap, even when her sister is grabbing the slippery soap away from her. And it turns out she loves the water and loves to splash and flip-flop all over and she’s squealing with delight and you’re soaking wet and you’re smiling too because she’s so damn cute, like a little fish.
 
At the vacation house she finds her favorite spots. One is the living room window where she waits and watches for people coming and going all day. She waits there for you when you go on your daily runs and when she spots you coming back she calls Mama! Mama! and because she’s been watching and waiting patiently, she’s the first one you scoop up for a kiss and a hug when you come in, breathless and sweaty. The other spot is the base of the staircase, which she loves to climb up, over and over. At first you are annoyed because it takes her foreverrrr to get up the nine or ten stairs and you have to sit there and spot her so if she tumbles she doesn’t break her neck but then it dawns on you that this is basically an impromptu PT session so you let her do it and you’re speechless when she reaches the top and she turns herself around and starts to lower herself down backwards, one step at a time. No one could possibly have taught her to go down stairs alone since you don’t have any stairs in your apartment where she gets PT four times a week. You know her therapist did teach her to get in and out of her chair and on and off the couch, but Teeny was the one who put together what she learned there with what she’s trying to do now. So with minimal help from you, she gets down this steep flight of stairs as easily as she crawled up them. Over and over and over. And we’re at the house for seven days and every single night she sleeps in a bed and she never falls out, not once, and you realize that you might be able to get those bunk beds for the girls’ tiny shared room you’ve been dreaming about after all.

And then it’s a new year and you’re home and life is back to normal. She has no living room window to stand at so she starts to wait for you in the hallway of the building. Soon work starts up and school starts up and you hardly ever see her, just like before and everything’s exactly the way it was only you donate the bath seat. And while you’re at it, you pack up piles of baby things that even Teeny has outgrown and you come across the little Baby Bjorn toilet seat you used with Bee and you put it on the toilet and you take off Teeny’s diaper and you stick her on the toilet and she pees. And you try it again a few days later. And she pees again. And she’s suddenly saying “potty” and “pee” and when she does it a third time, you’re not na├»ve enough to think she really knows how to hold it or tell you she has to go, but you’re starting to think that someday she might actually be toilet trained.

You don’t really let these little victories add up until one morning you look at the calendar and it’s January 8th and you have an appointment with her developmental pediatrician. You vaguely remember making that appointment back in September – it’s not easy to get appointments with one of the only developmental pediatricians in the whole city who takes insurance – and because you forgot about the appointment and it’s at 8 am and 8 degrees outside, you rush up there with Teeny bundled in the baby carrier, and you’re vaguely annoyed because you have so much work to catch up on from over the holidays and she’s vaguely annoyed because she’s two and a half and really doesn’t fit in the baby carrier anymore and would much rather walk only she can’t walk, which annoys her even more. You’re on your own for this appointment while your husband takes Bee to school. While you wait to be called, you walk around the waiting room bouncing her in the baby carrier she’s way too small for and you’re pointing at flowers and clocks and papers and posters and she’s repeating flower and clock and paper and poster.

Then you’re called and the doctor, a sweet older lady, makes small talk and watches her play and scribbles a bunch of notes and asks a lot of questions about what Teeny can and can’t do. She watches Teeny move, draw, throw, grab, pull open, push closed, pile on top, knock down, take apart and generally go from delighted to frustrated and back. And you’re sweating because it’s hot in there and you’re dressed for 8 degrees and also because you’re nervous. You’re nervous because developmental  pediatricians look at social skills, emotional levels and cognitive ability. They’re the ones who hold your kid’s whole future in their hands, in a way. The physiatrist can say “she will walk someday!” and the neurologist can say “neuroplasticity is a great thing” but they can’t promise anything because they don’t really know. What you really want to hear is good news from the developmental pediatrician because they measure her abilities to the range for her current age and in a way that’s more real than what the other specialists say because they speak in a much more open-ended way. Last time you saw this doctor, about six or eight months earlier, she had no answers. As an aside, you got some tentatively good news. “Well, she’s definitely not on the spectrum,” she offered brightly, explaining that while it was way too soon to make any predictions about Teeny’s cognitive abilities, she could see that she was very interactive, made eye contact, pointed at everything and was generally very receptive to other people.  You’re definitely grateful that your kid isn’t autistic on top of everything else but this is just not enough to reassure you that all will be well. What if she’s, you know – and here your voice drops to a whisper because you know what you’re about to say is the wrong term but you’re new to special needs so you don’t know what the right term is – retarded? And the doctor has no answers for you except to supply you with the correct term, which is developmentally disabled, and it’s a term you hate just as much and you hope you never hear it again, especially in reference to your kid.

So here you are months and months later and you’re sweating waiting for what she’s going to say about developmental disability this time. And when her verdict comes you don’t even realize what she’s saying because she’s speaking in puzzles. She says, “Well, I can’t say for sure that she won’t catch up completely.” Your mind spins with double negatives and you add it all up. “You mean you think she has a chance at being cognitively normal?” you ask, incredulous. “Yes,” she says simply. She explains that while she is still behind in the way she plays and even more behind in many other ways, she is much closer to where she should be now than she was to where she was supposed to be the last time she examined her. That means the gap is slowly closing; Teeny is making a lot of progress. Of course she added that she can’t make any promises, it’s still very early, blah blah blah, but in another series of double negatives, she assures me that she can’t say definitively that Teeny won’t continue to close the gap and get where she needs to be. And she reminds you that she still is very behind and that she has a long way to go and she offers you a series of recommendations about how to play with her, what she needs to learn, what you should be working on at home, but she adds that you are doing all the right things. You gather your eight million layers of clothing, scoop up your kid who is currently attempting escape and crawling down the hall, and, very anticlimactically, you leave and stop to grab coffee on your way to drop her at school, since you’re already late.


It took me three weeks to realize that was the best news we’d gotten in over a year. I mean, I knew it was good: on my way to drop Teeny at school, I called my spouse and told him. I called my mother. When we arrived, I told her preschool teacher, and later I mentioned it to a friend in a voicemail. But then I kind of let myself forget about it. I mean, what if we get our hopes up and she’s wrong? What if we get complacent and stop pushing her and it’s our fault that she doesn’t catch up completely? Earlier this week she had another Botox treatment, this time with no anesthesia whatsoever. It was hard to say who was more traumatized, me or her. I was visibly upset before we even started so they told me to wait in the hallway. I settled myself on the couch in the waiting area and prepared for an hour of catching up on work emails, surfing Facebook, listening to voicemails. A few minutes later, I heard her small voice wailing from down the hall, behind the closed door of the exam room I’d just left. “No no no no no!” I raced back in and found her on her belly, being held down by three people as the fourth injected her repeatedly behind her knees, in her thighs. She saw me. “Mama!” she screamed. I threw myself down beside her and looked into her eyes and told her I was there, I was with her. I kissed her forehead and brushed her hair out of her eyes. “I’m here, sweetie, and I love you.”

“No no no no, Mama, no no,” she blubbered again and again. How much longer would this take? But then it was over. While I got her dressed, I promised her vegan ice cream. “Ah – meem!” she repeated happily, nodding her head vigorously. We chatted with the physiatrist, who asked what our goals were for this Botox round. I explained that Teeny was plateauing and I was ready for her to start making progress again. She had been cruising tentatively for months and I was disappointed that she wasn’t moving faster. The doctor suggested a conservative goal of increased flexibility and strength; instead of scissoring her right leg 100% of the time when she stepped, she would only scissor 50% of the time.

But three days later she’s taking her own steps in the walker and I realize how wrong I was. Sure, the Botox was helping. But plateau? This kid was just getting warmed up. I count on my fingers and I realize that there were a lot of signs leading up to this moment.  But because this journey has been so hard for so long, like the developmental pediatrician, I’m only comfortable thinking about Teeny’s progress in double negatives. Okay, I tell myself. There’s probably no reason for me to think Dr. G is not right. Right?

The truth is, we still don’t know. It could very well be that Teeny doesn’t fully catch up physically or cognitively. But it could very well be that she does. We do know that it’s not time to slow down the aggressive approach and it may never be. The developmental pediatrician told us we were doing the right things for her and I was glad to hear it because sometimes I wonder. She’s a two year old kid and she has almost zero unstructured play time. She has no time for playdates. She’s almost always working hard.

As for me, I thought a lot about what it meant to have a chip on my shoulder and how I spend a lot of time comparing myself to other people and my life to theirs. I don’t let myself compare Teeny to other kids her age anymore so why would I think this is a good thing to do for me?  These days, Teeny loves certain books almost inexplicably: most recently she has adopted my 22 year old copy of How To Be A Grouch that an ex-girlfriend gave me (complete with inscription reading “For Aimee, not that you need help from this book!”). She carries it around, “reads” it aloud, talks to Oscar, and hugs his picture. I don’t understand why she loves this book so much. She has half a dozen other Sesame Street books that she ignores, and I’ve had this book so long I’d basically forgotten it, so she must have dug it out of some pile on her own. It’s also worth mentioning that Teeny is the least grouch-like creature on the planet. But like the book’s inscription says, she’s got a class-A grouch in her life; sadly, Oscar might seem more familiar to her than I care to admit. I’m working on it though…. and she’s clearly working too.