Monday, October 22, 2012

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. 

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