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.


  1. Thanks for this. It resonates in lots of ways for me as I'm struggling with some of my own baggage right now. I remind myself I can't possibly be stuck here forever...

  2. I'm at work trying very hard not to cry. It's like you scooped my thoughts out of my head. Our daughters are so similar and at the same time so different. I read this and immediately thought, "I'm jealous, all I want is for Aly to say Mama." But I'm sure you would love for Teeny to not need a walker. I remember having the same thought, when does she just get to be a kid?

  3. Thank you for this post. Your blog has been so encouraging to me as I have read through several of your posts. I relate with so much of what you have shared as we have a 15 month old daughter with CH. Currently going through all of the genetic testing. I know it's not a path we would have necessarily chosen but I appreciate that you share your heart and are open about your sweet daughter becuase it gives others like myself encouragement. Please feel free to email me any time--you know WAY more than I do at this point about all of this, but if you ever need a listening ear, I am here for sure!

  4. I would love to hear some of the cute stories from preschool!


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