How Teeny Learned to Crawl Sort Of, or, Navigating the EarlyIntervention System in New York City

Here is the rest of the blog entry that no mother wants to write. It's the story of How Teeny Learned to Crawl Sort Of, or, Navigating the Early Intervention System in New York City.

So there's good news and bad news.

The good news is that I am a mama who pays attention. Diligence and determination are my middle names. If you've read previous blog entries, you will know that I knew something was a little different about Teeny from the moment she was born. So small, so fragile, so sleepy. By the time she was five months old I was convinced. She wasn't rolling over and tummy time still made her miserable. By six months, I was telling her pediatrician that she was slow to meet milestones and she told me that she was fine, just lazy. By ten months I couldn't take it anymore and I turned a routine pediatrician visit for Bee into a referral session for Teeny. If you missed it the first time, you can read more HERE and HERE.

The bad news is that there's more news. We started Teeny at private physical therapy two days a week to give her issues a kick in the pants while we went through the evaluation process to see what we were really facing and what services we would qualify for. The first time we schlepped into Times Square early one weekday morning with both kids, navigating the stroller around the suits, the tourists and the horrible Elmo and Mickey Mouse impostors, I said a silent thank you to the gods of people with small children that the Disney Store and Toys R Us didn't open until 10, so Bee could not coerce us into a side trip (this time). We did however get suckered into tipping one of SIX Elmos for these ridiculous photos:

Nervously, I discussed the issues with the PT and he got to work. And he billed us, because our insurance company wouldn't touch this with a ten foot pole. I was grateful that I am a worrywart and keep an ample medical flexible spending account for such unplanned purposes. Teeny's physical therapy is worth it, and this physical therapist is a good guy. He works her hard but makes it look like they're playing. Convinced this is just a "minor delay," he has been our voice of optimism throughout this whole process, coaching me as much as he's coaching Teeny. I hope he's right.

The evaluators, on the other hand, seem like harbingers of doom and gloom. It's their job to tell it like it is, in no uncertain circumstances. So while it's such a relief to start getting some answers, I don't really like these answers. And because they can't technically diagnose, they succeed fabulously at scaring the crap out of nervous moms and dads with their vague "red flags" and "we generally like to see X, but with Teeny I'm concerned because instead I'm seeing Y," and so on, meaning of course that every evaluation leads to more questions and further evaluation.

The day before Teeny's first evaluation, our service coordinator, K, came to meet me at work. She was very kind and friendly, but only confused and scared me more when she handed me a pile of papers to review and sign. She talked about the process briefly, the goal of which was to determine whether Teeny would qualify for state funded services. And two minutes later, she was gone. 

The next day, we began with the developmental evaluation. We arrived at the agency's offices a good fifteen minutes early. We met K again, and H, the woman who helped me sort out the many different agencies who work with EI and secure my appointments. L was the psychologist evaluating Teeny. Whoa, I can not even believe I just wrote that. the psychologist evaluating Teeny. My daughter is a baby. A baby! She was one year and one day old when I put her down on a mat on the floor of Evaluation Room 2 and let someone evaluate her. L was an older lady, very sweet and enthusiastic. K and H both stayed for the evaluation, loving on Teeny, applauding her every move even as L offered a running commentary about what she saw. With Teeny in table-top: "See her hands? The way they are splayed out instead of facing forward when she's on all fours indicates that she doesn't have the strength to support her upper body enough to crawl. As long as her hands do this, she will always pitch forward." With Teeny in her lap: "See how she can't even hold herself up to a sit when you put her there? This is a very significant delay." With Teeny on her back, holding a toy in each hand and banging them together. "See how she holds something in each hand? This is very sophisticated and age appropriate." With Teeny kicking both legs out and waving her hands wildly: "This is frustration. Cognitively she is ready to move. If she could crawl, she'd be in China by now. She wants to play, but she can't. Her mind is ready to do new things but her body can't do them, and she will grow more and more frustrated if she doesn't get help soon." And so on, jotting down notes all the while, talking about her deficiencies in both gross and fine motor skills, and recommending further evaluations in PT and OT.

In summary? "Cognitively, Teeny is a smart and alert baby. She is interactive and social. Physically, she has the development of a 5 month old baby. Her mind is ready for walking, but her body is not." She said she would make a strong recommendation that Teeny be offered both PT and OT, but she could not be sure if she would qualify. I was hardly listening at that point, stuck on she has the physical development of a five month old baby. Even if she was right, it was hard to hear her talk about my baby this way. Still, it's better to hear it than not, and it was reassuring to have my suspicions validated. When we were through, I left Teeny with them and ran to the ladies' to pee and wipe away a tear. I wasn't sure why I was crying - because I got bad news or because the news was, for bad news, actually very good. When I came back, K, H and L had taken off their evaluator hats and were just three women loving on a baby. They were cooing at her and holding her up to a mirror, where her expression turned from concerned ("she's wondering where her mama went!") and broke into a toothy grin. She raised a hand and waggled it at her reflection and the three ladies gasped. "She's waving! I didn't think she could do that! Smart baby."

And then it was on to the next evaluation.

PT was next. This therapist, A, came to our apartment. She was allergic to cats (boo) so I shut our two into the girls' room amidst meows of protest, and then we all hunkered down on the rainbow mat and got to work. She echoed many of L's comments as she pushed and pulled and contorted Teeny into and out of many different positions. She showed me exercises to do with her, asked about the PT she was currently receiving, suggested we see a pediatric neurologist, but then would not say why. "Just to confirm that it's not neurologic," she said. "Though there are a lot of good signs, I am seeing some red flags." Then she looked me in the eye and told me very sweetly that the papers she was filling out about my girl were going to look very drastic and harsh. Be prepared, she said, and don't take it personally. After all, at her age, there isn't much she should  be able to do, so she is being scored on three things. if she could crawl, and she's so close, the scores would rise dramatically. Still, she'll qualify, and you should fight for as many sessions a week as you can. I recommend PT at least four times a week and OT at least twice. And she packed up her bags and left before I could take a single picture.

Less than a week later, we had the OT evaluation. This one was back in Evaluation Room 2, and this time my mom took Bee, so Johnny was with Teeny and me. Our service coordinator and another representative of the agency who were with us for the developmental evaluation both seemed shocked at how much Teeny had progressed in the week since. She was bunny hopping all over the place and able to work her arms more independently than ever before. This therapist echoed the PT's concerns that there may be a neurological issue.

The evaluators were all very kind. They genuinely seemed to enjoy working with Teeny and were so celebratory of her little victories that I am starting to feel encouraged and hopeful. And let me tell you, every day I love this kid more. As she gains more physical strength, she seems to grow cognitively as well. During the first evaluation I said she doesn't know ma-ma-ma means mama or that mama means me. She doesn't wave. She doesn't understand "hands up" when I'm putting the tray on the high chair. She can't move herself around at all. All of this has changed. In every evaluation, Johnny and I found ourselves exclaiming, "This is new! She couldn't do this last week!"

In the first eleven months of her life, Teeny did very little. In the past six or seven weeks, she is doing SO many new things. She rolls over in both directions and has essentially learned to crawl (bunny-hop style).

It's a work-around, but it gets her where she needs to go (and it's cute!).

Somewhere in there, Teeny had her first birthday. It fell right around the time I was feeling overwhelmed and afraid and really not like celebrating. Did I really want to invite every other parent of young children I knew over to look at my baby who was having such trouble? I was tempted to cancel all the plans lest people look at Teeny like a freak, or talk to me in hushed tones, asking in a I'm-glad-this-is-your-kid-not-mine voice about how she's doing. But then I said screw it. It's her first birthday and I want her to spend it with the people who love her. And she had a blast. Our friends and family are loving and respectful, concerned and caring. And if our baby ends up riding the short bus like the kids in this amazing book, then that's what we will have to deal with. But we'll take that one birthday at a time.

Most recently, she's shown us that she can push herself back from table-top into a sit, using her arms to steady herself. She has developed a voracious appetite and can feed herself using a pincer grip (sometimes). She clearly knows and comprehends her name and a handful of words. She shakes her head no when she's done eating and plays peek-a-boo by covering her own eyes to engage you in the game. And when I came home from work one evening last week, she looked up at me from her usual spot on the rainbow mat, smiled and said "mama!" I picked her right up and she put her arms around my neck. I felt her holding on; another first. This weekend we visited family and she got to play with new people and new toys in a new place. She snatched Bee's balloons away from her and threw a fit when Bee tried to take them back, which made us realize that we have entered the stage of parenting kids very close in age where it's sometimes better to have two of everything. Sitting in the backyard, she was so curious that she couldn't help but stuff the colorful fall leaves in her mouth (with a handful of grass and dirt as well). She is really into wind-up toys: the noise, the movement, their small size and "grabbability" are all really perfect for her needs, so we're amassing quite a collection. She's becoming more and more expressive and opinionated, which I can only see as a good thing. In many ways she acts like a normal 13 month old.

All the same, we did take her to specialists to rule out medical issues. The orthopedist we saw essentially tossed us out of his office after five minutes, saying that he sees babies her age who can't even hold their heads up and that if she still can't walk at 18 months then he'd consider doing an x-ray of her hips. The neurologist was less reassuring. He believes that Teeny sustained some kind of injury or some other "static event" as he called it, during either pregnancy or childbirth, that is causing her brain to miscommunicate with her nerves. Fortunately, he does not believe here is any degenerative disease and he thinks that since she responds so well to therapy already, this could be fixable. He did recommend an MRI all the same, which I'm on the fence about and haven't yet scheduled, but probably will soon since our pediatrician chimed in to say it was a good idea.

Then all the evaluation reports came in. The agency we're working with sent us a copy of the 23-single-spaced-page document that they sent to the state. Of course I read every word. The evaluators had warned me that their observations and recommendations, along with Teeny's test scores, would look very harsh in black and white. They reassured me that they had to be harsh, because this was how they got the state's attention. Our goal, they reminded me, is to get them to cover the services Teeny needs to make progress. I get all that. But seeing the charts with percentages and rates and all these horrible adjectives describing my child made me furious and sad. I got defensive. In my head I said "But she's doing that now, and that and that!" I choked back tears and resolved to be brave and to remember that this is a snapshot of where Teeny was pre-PT, which is what we want the state to see. And I also have to realize that Teeny does have significant delays and that, despite her many achievements over the past two months, she still has a long road ahead of her.

So hopefully we'll get the help we need. Supposedly the state pays for services in the home, but the agency we've been working with doesn't have any therapists who work in our neighborhood, so we'll have to be contracted out. That creates a whole new set of worries for me. The meeting with the state to create our IFSP (Individualized Family Services Plan) is scheduled for tomorrow morning. Apparently, the purpose of the meeting is to write this document, which will serve as a contract for us with the state and will cover specific services that Teeny will be entitled to receive for six months. And six months from now, the document will be updated in another meeting. We can request additional services and increases/decreases to current services as we go. Ultimately, however, the decisions rest with the state. Our agency encouraged us to look as involved and committed as possible, to which I was like, "Duh!" I have no more details that that, so I don't quite know what we're walking into, but I have done all my homework (literally! I did a whole paper and presentation on Teeny last week for school!) and both Johnny and I are prepared to be the fierce advocates for our daughter that I know we can be. Look out, New York State!

Friends and family, keep your fingers crossed for Teeny! We'll let you know how it goes. 

Evaluations, evaluations

Right after I wrote that last blog post about Teeny's delayed milestones, I went into full-on panic mode. I barely slept for the next few nights, tossing and turning and fretting about my baby. But I also went into full-on action mode. The outpouring of love and support that came from so many of you inspired me. A lot of you have been there and know -- in one way or another -- something of what I'm going through. Thank you all.

So I got busy. I made a zillion phone calls. I talked to aquatic therapists, people who do pediatric Feldenkrais (though I'm still not really sure exactly what that is), EI specialists near and far, physical therapists, orthopedists, you name it. I googled, I called, I left messages. I made a list of all the calls I made with the dates and their info, just in case I had to start harassing people for calls back. But everyone called back right away. I was so overwhelmed. 

And slowly, a plan came together.

Not for the first time, my high school connection saved my ass. My friends, my colleagues, my family, all of you who reached out with your stories, your suggestions, your well wishes: I am so grateful to you. And to my classmates: I really freakin' love you people.

It started with my lovely high school friend M, who does pediatric physical therapy. Thanks to modern technology, the fact that she lives in San Diego didn't slow us down a bit. I poured my heart out to her one late night via Facebook IM, and she asked me one question after the next to try to get at the root of the problem. She generously offered to do a Skype or Face Time session with Teeny and me to see for herself what was going on. Two days later we did that, and she gave us some suggestions for exercises we could do until Teeny's in-person evaluations. In the meantime, I was trying to track down the right person at the EI agency everyone kept referring me to but I was landing at one person's voicemail after the next. I decided to make an appointment with a private physical therapist recommended by my pediatrician until I could figure the state stuff out, and I'm glad I did. 

As soon as I got that appointment squared away, another high school friend reached out and let me know she actually works with the agency I'd been trying so hard to reach. She put me directly in touch with the magician there who pulled some fast ones to help Teeny evade the three month wait list. Her evaluation is scheduled for September 25. (Thank you, A!!)

Her private physical therapy evaluation was last Wednesday morning. The therapist put her on her belly on a cute rainbow colored mat and talked to us as he pulled on her pelvis, pushed here, poked there. And Teeny was such a good sport! She tried so hard to reach the toys he spread out for her. She cooed happily when he placed her on the ball and on the peanut to try different movements. He stressed that she needed to learn how to push off from one side and demonstrated her core weakness by leaning her to one side... and letting her flop right over. Johnny practiced and I chased Teeny and then I practiced while Johnny chased Teeny. By the time the session was over, Teeny was frustrated and in tears. I was somewhat reassured, Johnny was saying "I want to buy that rainbow floor mat" and Teeny had kicked three exercise balls across the room, rearranged all the stools, thrown a six pound medicine ball in my lap, and licked and left fingerprint smudges all over two mirrors. While I filled out papers and made appointments (twice a week for the next month), she and Johnny jumped on the trampoline. This place was better than Gymboree!

Two seconds after we put Teeny back in the wrap, she was fast asleep. What a workout! We got strict orders to keep her on the floor as much as we can when we are home, no matter how much she hates it. (And hate it she does.) But we are diligent and on the bright side, she's so exhausted from it all that she's napping and sleeping better than ever.

So we will do our own private PT until the EI evaluation, and if she qualifies at that point then she will receive additional -- and free -- care until the age of three, and if not, then that is even better in my mind. The magician explained that she had to demonstrate a delay of a year or more, which seemed weird to me because her appointment is the day after her first birthday and she is clearly far more advanced than a newborn, but she explained that they sort of "pro-rate" the delay and that it would make sense to me as we got closer.

The physical therapist pronounced this a "minor issue" -- as if any issue with one's child could ever be minor -- and predicted that she would be crawling by the end of the month. For a second I was thinking that would be the end of that. "So you don't think she'll qualify, then?" I asked, in my mind already seeing her pulling herself up, standing, walking. "No," he said, bringing me right back down to reality with a crash. "I do think she will qualify actually. Crawling is just the first step." He pointed out the many strange things she does, like shaking both her hands at the same time, the way her legs are usually locked together, the way her one arm gets caught under her when she tries to roll over. All of these things, he said, are signs of a weak core. He explained why she falls on her face when she gets up on all fours and rocks back and forth. He explained why she can't yet take off, why it's useless to try to stand her up or focus on sitting. He also said that these problems show up very often, in his experience, in smaller babies. This to me was forgiveness. Of course I will never know why Teeny is so very much smaller than her sister, but at least I know this could likely be related to her size and not to, say, something I did wrong. He was also quick to note that she is very alert and verbal, and that in his opinion this was strictly a physical issue. This too reassured me. 

So we have a plan. Teeny starts school this week. I will take her there, three days a week. Many of those days, Johnny will take Teeny to her appointments. And at home, we're all doing our part. The Bumbo is in the trash, the Jumperoo is for sale cheap (anyone want it?) and we ordered the rainbow mat. We have a basket of hand toys in the living room and Teeny is an expert at fishing out different ones to entertain her sister while she gets extended tummy time. This kid is on her belly ALL. DAY. LONG. She's trying so hard and has made a ton of progress from when the video and photos below were taken. Already she's starting to separate her legs when she wiggles and kicks. This makes for easier diaper changing too! Already she is leaning forward in the high chair to grab the Cheerios I leave for her, a little further away each time. Already she can sit better in the bathtub. Already she is reaching with one hand instead of two, and trying to lean on one arm to push herself up. She's a good student and a tough cookie, just like her mama.

What's happening with little Teeny?

How is it almost September?! I have been wanting to write for weeks now. I had a whole entry prepared in my mind about our trip to LA and how well we did, just us three girls. I wanted to write about visiting our friends, our trip to Disney, getting to see Farm Sanctuary's Animal Acres. I wanted to post pictures of my kids sleeping and playing quietly on the plane, and tell you all about how well Johnny did when four days after we returned from LA I left him for six days with the girls while I flew to San Diego to do a very intense leadership training program. I need to document how I actually left my girls with a babysitter, and I didn't die! I have great stories and even better pictures I want to preserve here. So I hope I will write that entry soon. But that's not what this one is about. 

This is the entry that no mama ever wants to write about her child. Here goes: I am really, really worried about Teeny. 

It's not so much that she had 103.7 fever today and is so full of phlegm that she has snot running down her face. It's not that she's so stuffy that she can't nurse because she can't breathe through her nose. It's not even that she only has two teeth so far. And it's not that I had her secretly weighed at Bee's pediatrician appointment yesterday by the sweet office girl when the doctor wasn't looking and I learned that she is only in the 6th percentile for weight. It's that she is weeks shy of her first birthday and she's not walking. She's not even crawling. And while I'm at it, I'll say here that she isn't even great at sitting by herself.

She can sit. But not for long. She can stand with support until her legs buckle. She can get up on all fours and scoot backwards. I'll be in the kitchen cooking, with her on the floor surrounded by varied and colorful toys meant to tempt her into crawling forwards, and I'll hear a wail from across the room and find her stuck under the couch where she somehow wriggled backwards seven feet or so and can't figure out how to get out. Her legs, arms and neck are strong. But what I've suspected for some time now is that her back is not. Something in her core, her very center, is weak and underdeveloped. You can see it in the photos, in the way she sits. I so desperately want to be wrong, but as the days go by and I see such little change, I fear the worst.

I don't know anything for sure. I'm a born worrier and becoming a mother has only made it worse. Now that I have other people to worry about, anxiety is a full-time job for me. Call this a mother's intuition, call it a hunch. Or call it me comparing her to her sister. (Who, for the record, crawled at 6 1/2 months, walked at 10 months, and is currently so big and tall -- 95th percentile for weight -- that I got a lecture yesterday on cutting her calories. On a two-and-a-half year old!) I look at my two girls, polar opposites in height and weight and developmental milestones and wonder, what the fuck, man? Did I or did I not give birth to both of these precious beings? What is going on here? People joke and say, one is shaped like me (I guess I'm the fat one) and the other like her daddy (the skinny one). But the truth is, I'm not fat anymore and Teeny might be slender like Johnny but she's not long and tall like he is. And she eats as much if not more than Bee, but she's barely gained any weight since her last visit. So who knows.

Teeny is the most delightful child. I love her with all my heart and all my soul. She and her sister grew inside me. This is a concept that, as an adoptee growing up, I could simply not comprehend and still, two pregnancies and births later, strikes me as weird. She is named for the person I grew inside of and with whom I shared that same intimate bond. To me, Teeny is stunning. She looks nothing like me: she has big beautiful blue eyes, long dark lashes, full lips like her daddy. Her hair is coming in blonde to compliment her fair complexion. But she is my daughter, and I do not want her to struggle. Today I watched her up on all fours, rocking back and forth with a delighted grin. Despite her fever and snotty nose, she was happy, and trying. She laughed when Johnny draped her head with a cool wet washcloth to try to get her fever down, and happily posed for pictures. She rarely if ever cries, has been sleeping through the night since she was a day old. She plays with her sister already and laughs hysterically at every little move Bee makes. She claps her hands whenever I say "Yay!" She feeds herself Cheerios and other small things while I feed her her favorite foods: lentils, spinach, sweet potatoes, avocados, tofu, Ezekiel bread, oatmeal. She especially loves peanut butter and jelly and gobbles it down like it's her last meal. Then she shakes her head emphatically and presses her lips together when she's full. She likes to be in water. She is starting to talk, pretty much right on schedule. Ba-ba. Da-da. Guh! And so on. She sings and hums. She is bright eyed, alert, intelligent, aware. She is social and connected to people, especially me. I'm not worried about her mind. And I think, sure, her upbringing thus far is different than Bee's. Like many second children, she gets less attention than her older sibling did. She is held a little less, left with a toy or a stuffed animal a little more. But like many second children, she adores her older sibling. I hear time and time again that second children are born bigger than firsts, and that they often achieve their milestones faster because they want to be like big brother or big sister. Not Teeny. I watch her rock back and forth, poised on the very edge of about-to-crawl-ness, and again and again I watch her collapse, unable.

So yesterday we had Bee's 2.5 year doctor's appointment. Unable to control myself another second, when our pediatrician asked if I had any other questions, I thrust Teeny at her. She was smiling and cooing. You've never seen a happier baby than this one, even when her mama is about to sell her out to the early intervention specialists. Which is exactly what I did. For months now, I've been hearing all kinds of excuses. She's fine. It's just volition. You can't compare her to Bee. Everyone goes at their own pace. She's not in a rush! Just wait, before you know it she'll be walking across the room. Give it time. Well, none of that is happening. She makes progress, but it is slow, and I have no patience. I don't want to hear it anymore. 

So today I called the early intervention referral number the pediatrician gave me. They didn't take me very seriously, and said that in a few weeks I will get a call back and at some point after that someone would come to do an evaluation and maybe they'd offer her physical therapy but it was possible that they would determine that she just needs time. I marked my calendar for the date by which I should hear back so I know when to start calling daily. In the meantime I will call my orthopedist and ask for a referral to a pediatric orthopedic specialist, ask every Facebook friend, every doctor and nurse I know, every parent, every physical therapist I've ever seen if they have any idea what we could be facing. I'm going to give this kid all the love and affection I have in me, which is a LOT, and I'm going to hope and pray that I'm wronger than wrong and that everyone else is right and that tomorrow or the next day she will just get right up and run to me. I know that all things considered, I am lucky. Teeny may need some help but she will get it one way or the other. We have good health insurance and an emergency fund, and we have more determination than most. She is not in grave danger, or so I'm told. Other parents face delays and challenges with their children far more serious than this. Still, I am losing sleep over this. This is not how it was supposed to be.

So you can tell me I'm crazy, you can tell me I shouldn't compare. Share with me how radically different your kids are from each other, and give me phone numbers of doctors for second and third opinions. Send Teeny your love and support, your thoughts and prayers. But you can't tell me not to worry. I'm here trying to make sense out of it all, wondering if I am to blame, if we somehow did something wrong, if maybe that wackadoo Ayurvedic doctor I saw in desperation when I was deathly ill who told me there was some cataclysmic event during my pregnancy that affected my health and Teeny's too could have been right. (Side note: I doubt it. She also called my GI woes -- the reason I went to see her -- a Balrog in my belly. I love The Lord of the Rings as much as the next person, but a Balrog in my belly? Really? Come on.) Even if there's nothing else to be done but wait for her to decide to get up and walk on her own, I'm always going to worry. Even when Teeny is finally crawling, which I know she eventually will, and then when she's walking, and eventually running and climbing and jumping, I am always going to worry.