Bo Bigelow's Blog, page 10

Meet with Me

Tess has a bunch of amazing specialists working to help her. She went to the hospital in Boston a few times this year. She had hip surgery, got scoped by a GI doc, and took tests with an audiologist and an adaptive communication specialist. Here in Maine, she saw a physical therapist and visited her pediatrician half a dozen times.

Thing is, most of these specialists aren't getting paid. Our insurance company, United Healthcare, has an administrator called UMR, and their policies are designed to keep them from paying Tess's doctors, or at least to delay those payments for as long as possible. I'm on the phone and emailing UMR pretty often. I've written about this before, here and here.

I'm not leaving this office 'til my doctor gets paid.The biggest problem I have with UMR's no-pay policy is this pretense they've invented, one that says they aren't sure whether our family has secretly gotten new health insurance coverage from somewhere else. Until they know for sure whether we have other insurance, they say, they won't pay a dime to any of Tess's doctors.

Well, I've told them. I called their 800 number, once in August and then again a month later. Both times I said nope, nothing's changed and you're still our primary insurance. Both times they apologized and said all claims would be reprocessed. But here we are in mid-October, still getting medical bills for services that Tess received in July. In spite of my calls, UMR is still saying the same thing:  they deny all claims because they need other insurance information.  

This week I'd had enough. I emailed the president of UMR, a man named Jay Anliker, and asked to meet with him personally. Apparently I'm not the only one having difficulties with UMR not paying doctors for the work they've done. There's a whole county of employees in and around Indianapolis who have also had enough, which I mention in my message.

Here's what my email said:

****
Dear Jay,

I'm writing to schedule a meeting with you.

For years now I've had a lot of problems getting UMR to pay claims, mostly for my daughter, Theresa "Tess" Bigelow, age 4, DOB XX-XX-XX. Our member ID is XXXXXX, and it's under my wife's name, XXXXXXXXX, who's employed by XXXXXXXXXXX.

Since my wife started her job in August 2010, I've called your 800 number a whole lot, and also written letters to claims services. I know UMR changed its website recently to try to make it easier for customers like my family, but we're still having trouble. Depending on who I talk to when I call your 800 number, UMR's computers either have a bunch of information about my family and my communications with you, or none at all. Go ahead--look me up.

I read somewhere that employees of Hamilton County, Indiana were having issues recently with UMR regarding claims, and so you met personally with Steve Dillinger, the county commissioner, to try to work things out. (Here's the article where I read about your meeting.) So let's you and I do the same. If you're really serious about helping customers, meet with me. I live in Maine, and I'm a stay-at-home dad to my two kids, so do you think you could come here? I'm free most weekday mornings, and we could meet here at my house. You can reach me on my cell: (207) XXX-XXXX.

I'll look forward to a personal response from you. Let me know when you want to meet, and I'll send you my address. Thanks!

Best,

Bo Bigelow

****

I'm waiting to hear from Jay. Watch this space.

A House, Empty from the Waist Down

In the interest of childproofing, our house is denuded.  We've stripped it of the things that could kill--the toxic soaps and cleaners. We have banished toasters and sharp blades to high shelves, where they gather dust, forgotten. Tables are clear of books and magazines. God help you if you need a pen for anything. We can no longer have plants. As a guest steps into the place, their voices and mine have a disconcerting echo. It's as if we've forgotten to move in, they want to say.

Meanwhile, we are left with the stuff of daily life, which we can't hide:  the mail, our smartphones, pairs of shoes, paper towels and athletic bags with soccer equipment. Tess is relentless in finding these. When I spend any time with her, it requires a new dexterity. When I bring her in the shower, she attacks the floor, for a melted soap fragment that I'd missed; I have to pick her up and toe the soap into the drain. I have to think ahead, or it's in her mouth. Most of the time, as I realize it, it's already too late. I look, and she is grinning at me through soap-covered teeth. Or I find her on her frog potty, snacking on the roll of toilet paper I've forgotten to remove. I try and fail at this almost every day. Our girl is quick, I'll give her that.

Musical Chairs

For months now we've been thinking of a great unknown for Tess:  kindergarten. Next year at this time, she'll finish preschool, board a bus of some kind, and join her brother at Falmouth Elementary. Will she be in a chair or will she walk aboard that bus? 
Well, yesterday her physical therapist told me that we need to start thinking about a chair for her. Yes, T is close to walking, and yes, she could do it at any time, and yes, we all are pretty sure she'll be on her feet eventually. But in case she isn't, we must provide the school with a chair/stroller option. Because they certainly won't carry her. 
Thing is, her current stroller is almost too small for her. We have an umbrella stroller, but it's only good up to 50 pounds. And besides, her feet are already dragging on the ground with that one. At any time she could plant a foot as we're speeding along and thus tip the whole stroller forward. Pretty unsafe situation.  
It is hard to think about how agonizingly close she is to walking, and how close she has been for the past few months. I can't count how many times I've cheerily told relatives, "Any day now!" Her legs have the strength to hold her up, and she's nailed the mechanics of it, the one-foot-in-front-of-the-other part. She just won't do it, though. 
And so the stroller. It will have big steel loops welded to its frame, so it can be tethered down safely in the handicapped area of whatever vehicle ferries her to and from school every day. Ideally it'll be cushioned around her head area, but not with foam, because she's so bitey. I'd love to say it'll be lightweight, but I have no such illusions; at this age and weight even the simplest strollers are backbreakers when you try to lift them into your car. The one she has at school, for example, a brand misleadingly called Pixi, is evidently entirely constructed of ununoctium, the element with the highest atomic mass. Curious, I tried to move it the other day and pulled about seven muscles. What the hell kind of pixi(e) weighs so much?      
This past weekend I saw dozens of old friends, some of whom I haven't seen in ten or twenty years. Most of them knew me in high school, well before I met my wife, before I ever dreamed I'd know things such as what happens when a 4-year-old drinks a bit of the hand cleanser Purell (turns out it's the equivalent of rum, the poison control center tells me--Tess'll be a bit drunk for a while, but will otherwise be fine.) One by one, these people pulled me aside and told me that they often read this blog and they're pulling for Tess. Many sighed and said they wished they could do something for us. What they didn't realize was that it's heartening just to hear that from them. It means something to know how many old friends are with us. When we rejoiced and danced around our kitchen--upon recently hearing that Tess took two independent steps at school--all of those people rejoiced with us. It meant a lot when they all told us that.    
The best news of all from Tess's PT is that we shouldn't order our girl a power chair. If Tess were never going to walk, we'd pick a power chair now, to get her used to it, since it'd be her only means of transportation for the rest of her life. But Tess will most likely be on her feet, the PT said. It's the closest thing to a prediction I've ever heard from this particular PT. The stroller will be temporary, just to get Tess around the school, until she's walking on her own. And I guess on that day, when Tess is eventually walking around the school, we'll need to tell them to watch out for her. You know, to keep an eye on the Purell.

The Weak Link

Right now, we're in a sweet spot. After a couple of substitutions here and there over the past few years, we have an assemblage of service providers for Tess who we affectionately call "The Dream Team." Her teachers at school are focused and affectionate, working tirelessly to potty-train Tess and show her life skills, such as washing hands. Tess has two physical therapists, one at home and one at school, both of whom lovingly but strictly push her, in efforts to make her stand and walk. Her speech therapist is always making buttons and other communication devices, and regularly emails us videos of Tess's new signs. Her horseback PT, her swimming PT, her vision specialist—they're all incredible, and they all make a difference every single time they work with Tess. A difference we can see. They're rockstars. We're pretty damn grateful.

But it wasn't always like this. Early on, we had a provider who, though contractually obligated to help Tess, didn't really help. She wasn't a bad person, she just wasn't great. Her heart wasn't in it. She'd frequently not show up, and then have some fuzzy explanation for her no-shows. And then, as winter arrived that year, she started telling us: "You know, I'd really rather not drive in snow." 
Uhhhh, we live in Maine. Where it snows. A lot. Pretty much every winter. 
At the time that this provider was flaking out on us, I had just made a serious life change. Before we moved to Maine, my entire existence seemed to revolve around fighting with people—not only at my legal job but also with everyone around us, about money, over parking spots, while driving. But after we moved, I turned over a new leaf. I decided to let things go. Be less confrontational. Go with the flow.   
"We gotta get rid of her," my wife said about the not-driving-in-snow service provider, after we'd gotten about the third cancellation from her. "She's the weak link in this chain."   I talked her down, trying to give the provider a chance. I said something dumb about cooler heads prevailing and wanting to wait and see. Looking back, I guess I didn't want to offend anyone or be seen as a crazy, unreasonable parent. I was wrong. 
Every day that Tess didn't get services from that provider was a lost opportunity. I see now that we should have cut her loose at the first sign of trouble. We owe that to Tess. She desperately needs these services. We have to be her advocate, because she's never going to speak up for herself. If someone isn't doing the job, there's only one thing for them:  a pink slip.   
A rare sad moment for an otherwise happy gal.When we did finally approach the provider's boss and say we weren't happy and wanted someone else, we got another person. The new provider was willing to drive in the snow. She wrote and mailed us detailed reports after each visit with Tess. She emailed us with stories. She thanked us over and over for letting her work with our daughter. She's like the rest of the team. A total rockstar.  
I only wish we'd made the change sooner. It's hard to think about lost ground, about neuroplasticity and intervention, and how Tess might be different if we'd brought in the new provider immediately.   
So if you're out there, parents of a kid getting services, and you're hesitating or trying to be nice, well, don't. Replace the weak link now. Your dream team awaits.

It's Not Just a City in Maryland

Tess is changing. There's this cool pattern she's developed. She's in school full-time all summer, from 8:30 a.m. to 2:30 p.m., just like always. She makes slow, steady progress at school, as usual. But when we pull her out for a week or two of vacation, her progress is crazy. We've seen this before, last March when we took her to Key West. She comes alive and does new things.

Gimme the Doritos and no one gets hurt.These days my favorite thing is that she's become a world-class hugger. She knows what hugs are now, and she dispenses them freely, pretty much every time you pick her up. There was even a time, as I was holding her in a dark theater recently, when she purposefully grabbed my head, pulled me close, and gave me a big old sloppy smooch on the cheek. So she's a lovey one.

Another habit she's developed is using our hands as tools to get what she wants. If her container of bubbles is screwed shut, for example, she'll grab my wrist and direct my hand to the container, to make me open it for her.

It's hard to express how much this hands-as-tools habit could mean. For now it means she can recognize when she's unable to do something for herself, and can also can ask us for help. This is huge because it's a gateway. Right now it's bubbles she wants--a single item that's there in front of her. But we hope that before long she'll be able to make her wishes known about other stuff.

She has object permanence, which is the capacity to conceptualize an object even when it's not visible, as when you drop a pacifier under the table and she reaches under there to get it. But how far can she take that? It's a mystery. She regularly crawls to the bathroom door to let us know it's potty time. Maybe at some point she'll be able to ask for a certain person who's in the next room, but who was just sitting with her. Maybe eventually she'd ask for someone she hasn't seen all day. We can only hope.

She is napless these days. Napless. As in, finally giving up her nap. This is good and bad. Good because we'll be free to do afternoon stuff. Bad because I'll never get anything done in the house again.

Finally, she's discovered mischief and how to make it. She shares that trait that eventually unfolds in all toddlers:  the ability to tell the decoy wallet from the real thing. And now she goes after the real deal, with the mission of encasing it in drool. If she knows I'm coming across the room to stop her, she'll go even faster to get it in her mouth, and I'll hear a devilish giggle come out of her. When this happens, I can't even get mad at her.

Victorious

For much of her life, Tess has been throwing up. Not in the full-on, chunder-bucket, vomiting kind of way, but in tiny amounts, usually during meals or immediately afterwards. We call it vurping. You see, our girl digs food. Big time. Occasionally she becomes, shall we say, overzealous about chowing down. And if she takes too many bites of chicken at once, or sucks down too much water, for example, rest assured--you'll see tiny chicken bits come back up, or even a return of all that water, suddenly dribbling down her chin and drenching her entire shirt and lap. She was diagnosed long ago with gastroesophageal reflux disease (GERD), and we've been able to manage it with medication and a strict Paleo-esque diet. We still worry about her digestion, though, especially when she's spitting up pieces of food while in her crib and then accidentally inhaling that food (which has happened a few times.) So today, at long last, we drive to Boston Children's hospital so that her gastroenterologist can scope her. He will sedate her, examine her upper GI tract with a fiber-optic scope, and get to the bottom of all this.  
Unfortunately, in order for the GI doc to look around down there, Tess's belly has to be empty. Like I said, the girl loves to eat. Accordingly, when we cannot give her any breakfast this morning, she objects. Vociferously. We are less than a mile down the road to Boston when she begins bleating from the backseat like a disgruntled goat. Today is not our first time doing the no-eating thing with her. Last time she arrived at BCH for a surgery, she was so pissed about being unfed that she took a chomp out of a nurse's hand, drawing blood. Today as we make our way down I-95 we try to placate her with pacifiers and keep our hands away from her mouth. She does not calm down, even a little bit.  
Her brother has been feverish and coughing this past weekend, and is in no mood to get up early, let alone spend four or five hours in a car to pass the day in a series of hospital waiting rooms. My wife and I are professionals, however. For years we have made this Boston trip, more times than we can count. We know the journey's pitfalls and victories. Thus, armed with an iPad loaded with games, we keep Dana happy, in spite of his sister's cries. For a time, anyway.
Unfortunately, as we enter Boston the traffic slows and finally stops altogether. We are on the Tobin Bridge, only a few miles from our destination. But no one moves, and soon we're late for our appointed time at the endoscopy unit. Dana is moaning about something from the backseat. I am trying to call the hospital to tell them we'll be late, but I cannot get anyone to answer the phone. It is at this point that Dana snatches a plastic bag and begins to vomit into it. 
Soon--Dana still throwing up, Tess still bellowing at the top of her little voice--not far from Fenway Park, we pass Citizen Public House, a dining establishment we've gotten to know pretty well from our times at Boston Children's. I adore it. It has high seats, gathered around a warm and shadowy bar. There are extensive whiskey offerings, and not a single kids' menu in sight. It is so close, its door not even thirty feet away. I can almost hear how quiet it would be in there. It beckons to me.   
As Dana finishes throwing up, he says, "I'm all right." He is pale but is already smiling spiritedly, as if willing us all to forget what has happened. "I couldn't really eat any breakfast today, so the good news is, the bag's empty. See?" He shows me.  
At this, my wife and I smile at each other. We have both recently read Gretchen Rubin's The Happiness Project. Part personal narrative, part self-help book, its message is pretty simple: you can decide to be happy, even when things are kind of sucky, and you'd be surprised how often it works (and also rubs off on those around you.) Sound corny? It kind of is, until you read it and see it in action. We are both big believers in Rubin's theory. 
As it turns out, so is Dana, despite never having read the book. This past week, out of the blue he told me: "I'm good at dealing with disappointment, Dad." Something about his statement--and his cheer in delivering it--made me feel terrible. After all, when you're seven you shouldn't be routinely disappointed. I worried for the twelve-hundredth time that we are making him grow up too early. That we unfairly make him shoulder too many burdens associated with Tess. That someday when he is grown-up he will tell someone he never had fun as a kid--he had a sister with special needs instead. That he hates her and us for all of this. But he doesn't. 
Knackered from today. Tess is also quite fatigued.Today, as our car speeds over the border back into Maine, he is positively cheerful. He's overcome his carsickness. He has tolerated the endless waiting, the fact that they don't allow food in the waiting room, the unrelenting stream of inanities from the waiting room's upper-decibels TV (which they don't let you turn off), the crappy hospital food, the 90+ temperatures in Boston, and the absence of anything even remotely fun for a seven-year-old boy. He is excited that his sister's scope turned out okay and that there was no sign of any issues. At Tess's bedside after the procedure, he is captivated by the monitor displaying her vital signs. He is thrilled by the hospital's valet parking option, which costs only an extra $5, but spares us the walk and elevator ride to and from the parking garage, thus preventing untold back pain and aggravation. At glimpsing the back of Fenway Park through side streets on our way out of town, perhaps knowing of the contagion of good humor, he shouts in triumph. We all do.

Ka-CHOW!

Most movies about people with disabilities go something like this:
(1) A grim-faced doctor tells the family, "He'll never hold a tennis racket again," or "You should put her in a facility for the rest of her life." (2) Then, ka-CHOW! there's a huge breakthrough, and the disabled person's caretaker--usually an unflappable nurse or orderly--calls the family and says into the phone, "You're not gonna believe this!" and they all come running, to see him joyfully swinging a tennis racket like Bjorn Borg, or her jumping up and down on the bed of the facility, asking for a cup of Darjeeling tea. (3) Everybody laughs until they cry, etc. etc., roll credits.  
What nobody tells you about disabilities is that there are many days that don't have any breakthroughs at all. Most of the time, I arrive at Tess's school in the afternoon and hear from her teachers only that she did well that day, and didn't spit up too much of her lunch, and seemed happy. In other words, about 98% of the time, she stays the course. 
That's why this week we were thrilled to hear that Tess had taken two steps at school. She walked! It happened. It's common for her to hold our hands or fingers and take a few steps, but this was different. She stood while holding her teacher's hands, but then stayed standing, even after the hands disappeared. Then her teacher stood in front of her, and Tess took one purposeful step. Realizing that she wasn't holding onto anything, Tess panicked a bit, but didn't fall. She took one more step, before falling forward against her teacher's legs and grabbing them with all her strength.  
It's funny because we were just starting to become concerned about the no-walking thing. She'll turn five in the fall. After this summer, she's only got one more year of preschool before she has to go to kindergarten. And if she isn't walking by then, we aren't sure what to do. At our town's public school, they won't be willing to carry her. There's been talk of a wheelchair. Which is frustrating, because we know she can walk but just hasn't chosen to do so yet. At a meeting with all of Tess's teachers, literally the day before the two steps, my wife had said, "We gotta get this girl walking." 
And then, as if she had been listening, Tess did it. The next day. I wish I had seen it. It hasn't happened again, but we'll be watching for it. 

Thanks for All Those Miles, Team Hoyt

Tess will go to school in a couple years. Kindergarten, I mean. And then first grade, and so on--at the same public school that our son attends. In many ways her days will be like they are at preschool, where she works on self-feeding and learning to walk. But while her preschool has many kids with special needs, I cannot say how many will be at the public school. I don't know how things will go down at recess. Her brother can back her up, but not every second. How will those other kids treat her?
 
Luckily, Tess has help from The Cromwell Center for Disabilities Awareness. They go into schools and specifically teach kids how to treat people with disabilities. If someone is different, do they deserve respect and empathy? Yes. If we stop to think about what a disability is, do we actually know quite a few people with disabilities? Yes. In a spectacularly thoughtless moment, one of our relatives told me this about Tess recently:  "One day maybe she'll turn into a person." That's precisely the sort of harmful bias that I fear will plague Tess throughout her life. And the reason we love The Cromwell Center so much is that they target that bias.  
Every year the Center has an auction and dinner to raise money. We always go. This year the guest of honor was Dick Hoyt, who formed Team Hoyt with his son Rick so they could run races together. Rick has spastic quadriplegia and is in a wheelchair. Since 1977, they've competed in over 1,000 races, including marathons and triathlons. For runs, Dick pushes Rick in a special racing wheelchair. For bike rides, they have a specially designed tandem. And for swims, Dick pulls Rick in a boat with a cord.  
My wife and got to the auction early, before anyone else, and there, hanging out in the silent auction room, was Dick Hoyt himself. He's in his seventies, with a slight build and hair parted on the side, Merv Griffin-style. You would never guess that he was a marathoner, let alone one who pushes his son in a wheelchair for all 26.2 miles. We introduced ourselves. His voice was quiet, almost lilting, with a Massachusetts accent so thick it bordered on impenetrable. He told us about recently deciding to stop running full marathons as a team, and he seemed sad about it. Rick wasn't there that night, he said, because he was out whale-watching. An odd thing to tell us, I thought, as he was hustled away to get ready for his appearance.  
In his speech later on, he recounted Rick's birth. The umbilical cord had gotten tangled around Rick's neck, depriving him of oxygen and causing brain damage. When we was born, Dick and his wife Judy were told that Rick would never be anything but a vegetable, and that they should stick him in an institution. Dick got fired up as he related what happened instead. He and Judy brought Rick home and raised him like any other kid. He couldn't walk or talk but they got him a special computer that let him communicate. Rick finished high school and then graduated from Boston University. "We're still trying to figure out what kind of vegetable he is," Dick said, deadpan. The room was full of us--the disabled and their relatives--and the applause at this joke was thunderous. 
He told how they got started racing. After their first race, a 5-miler with Dick pushing Rick in his wheelchair the whole way, Rick said he loved doing it because when he was running he didn't feel handicapped. When they finally got ready to run the Boston Marathon for the first time, they weren't allowed, because they had not qualified with a fast enough time in another marathon. "We did!" Dick insisted. No, they told him, the qualifying times depend on age, and they had to qualify using Rick's age, not Dick's. In other words, because Rick was in his 20s and Dick in his 40s, they had to run much faster to qualify--a time of 2:50. That's crazy fast. Like six-and-a-half-minute-mile fast, only you'd have to do it 26.2 times. Getting that time for a marathon would be hard enough without the wheelchair! You could almost picture the race organizers, smugly turning down Team Hoyt and thinking they had heard the last of them. But Dick and Rick wouldn't go away. They qualified, then ran Boston in 1981, and have run it every year since.  
In his speech, Dick again mentioned why Rick wasn't there--the whale-watching trip. I realized why Dick was talking about it. Being confronted over and over with people who say no, who discount your kid, and who treat them as less than a person? It does something to you. You become fierce. You notice the ways in which your kid is independent--his interests and his opinions. They stick with you, those times when they don't go with the flow. Maybe Rick was supposed to show up at the auction and dinner. Maybe they'd scheduled him to be on stage with his dad, I don't know. But he wanted to go whale-watching. So he did. And fifty-two years after someone called him a vegetable, I could see how Dick's life had unfolded since then, watching his son become a man, pushing him in the wheelchair across hundreds of finish lines, every step in every race celebrating what a fine person Rick had grown up to be.  
(Photo credit:  Matthew J. Lee, The Boston Globe, http://abcnews.go.com/Health/team-hoy...) 

Now We're Talking

Eat, more, and the middle finger. Those are Tess's main messages these days. Well, not actually the middle finger. But she's got sounds she makes when she's annoyed with what's going on, and she uses them--to get out of her high chair, to tell us she's sick of being in her carseat, or to indicate that she's tired and ready to be put down to sleep.

For "eat" and "more" she can sign clearly. She's been doing these two signs regularly, throughout meals, for a while now. (She also sometimes signs "drink.") There's no mistaking them. She makes eye contact, does the sign, and when we don't respond right away, she does them again, with emphasis, until she gets what she wants.

It's that third one that's the problem. The all-purpose, middle finger, "I'm unhappy" message. There isn't a sign for it, just a yelling that increases in frequency and volume over time. Since we often can't tell why she's annoyed, we have to go through what we think might be bothering her, and make changes, to see if she stops. It's a baffling process of elimination. The order goes something like this: check her diaper, bring her into the potty, make sure her shirt is dry, provide her with a toy to play with, pick her up, rock her, sing to her, and put her down. Sometimes we try everything and she's still yelling.

After one of these episodes lately, I brought her in to the potty, she went, and then we washed hands at the sink. She laughed, delighted to have some water play, and I realized why she had been yelling at me at the top of her lungs for an hour:  I had brought her in there to pee, she hadn't gone, and I brought her back out, without doing what she had really wanted, which was to play in the sink. (She digs water.) Oops.

Tess is going to be five this fall. Her wants and needs have become more complex lately--well beyond mere eating and drinking. So to get some help with unlocking these mysteries, this week we headed to Boston Children's Hospital, to see Tess's speech pathologist (SLP) in their Augmentative Communication Program. T has been seeing her for a long time and we are big, big fans.

Here's what we learned on this visit:
(1) We need to sign waaaaay more with Tess than we currently are. Every day I model "eat," "more" and "drink," so of course those are the only ones she does. My wife is much better about signing, because she learned a bunch of ASL back in the day. The SLP told us about a website called signingsavvy.com, so I can learn more signs and really get on it.

(2) It's time to install buttons around our house. These buttons are switches, and we can record sounds on them. So if Tess wants a snack, she can crawl to the cupboard where we keep her food, and the button, which will play our voices saying, "Snack, please." In the bathroom, she'll have multiple choices of buttons, each on the thing they represent:  bath, toothbrush, sink, or potty. The SLP recommended that we order this set of five single-message buttons. Done-zo.

(3) Tess frequently gets distracted by the external parts of communication devices. On an iPad, she ignores the screen because she wants to feel and bite the outer edge. On a black board where we display 3D cutouts of her toys, she picks up the board and wants to eat it. The wand from a container of bubbles interests her, but it's in her mouth in seconds. (Notice any pattern here?) There are ways around this, fortunately. One is to use a transparent document folio, like this, so that she can see the item but not get hung up on trying to eat it. The key is to show her that no amount of pulling will allow her to get the item. Once she understands this, she'll interact with it--for example, she'll point at it to request more of it. Another solution to the grab-and-eat problem is to clamp down the iPad. We explored some heavy-duty hardware, like these Ram mounts and a variety of adjustable clamp arms. Unfortunately,
none of these were strong enough to contain Tess, who pulled them each to her mouth with minimal effort. That's my girl! We'll keep on working on this one.

4) Tess's vision is still a conundrum when it comes to communication. She's exhibited behaviors consistent with cortical visual impairment, so we don't know what she sees. Her eyes are healthy, but even with her glasses on she most likely has a hard time processing what she sees. Luckily, there are a bunch of iPad apps that are great for a girl like her:  Tap-n-See Zoo, Black & White (by Fisher Price), Tap Speak Sequence, and Peek-a-Boo Barn. Once she gets used to using these apps, they'll hopefully lead to bigger skills down the road, like using a communication board to tell us what she wants. I dream of such things.  

How the Swear Jar Was Filled to the Top

Tess is potty training. I know, right? We can't believe it either! She can't talk or walk, and her only signs are "more," "eat", and sometimes "drink." But nevertheless, over the past few weeks she's been Johnny-on-the-spot when it comes to potty training. We can even have her in a pull-up during the day.

When we first considered making the move away from diapers, I couldn't imagine how it would work. She wouldn't be able to tell us she had to go. Nor could she get herself into the bathroom; the one on our main floor has a door that springs shut, and we like it that way. (We can't have an open-door policy with her, since she eats everything.) Even when we brought her in there, I wondered, how would she know it was time to go?

Well, gradually she's gotten the picture. We got a little plastic frog potty, the same one they use at her school. And at first we would just bring her in there, put her on, and wait. There were goony songs we'd sing, to the tune of "Frère Jacques." Sometimes we poked her in the belly, to make her want to go. But eventually it started to happen more and more, and now she gets it. After weeks of reinforcing the routine, when the pull-up comes off, she knows the deal, and she goes. It's a regular thing now. At school, at home, everywhere. Number 1, number 2, the whole deal.

With advancements like this, we felt energized this week as we headed down to Boston Children's Hospital. We are no strangers to BCH. We already take Tess down there often, to see her doctors in these departments: audiology, augmentative and alternative communication, genetics/metabolism, neurology, ophthalmology, and orthopedics. This visit was to a new doctor, a pediatric gastroenterologist. Our visit's purpose was mostly to deal with Tess's gastroesophageal reflux disease. It's gotten much better since we changed her diet and basically made her paleo, but we were still hoping to prevent any further nighttime airway problems, like the ones I recounted here.

This Boston trip was more complicated than most, for a few reasons. First, Dana felt sick, so we couldn't send him to school. We had no choice but to bring him with us. Second, our timing was all wrong. Usually we like to get morning appointments in Boston, in the sweet spot between the morning rush and lunchtime. We've done afternoons, but we much prefer mornings. Parking's easy, there's not much traffic, and we can grab an early lunch. Unfortunately, we were stuck with an afternoon slot this time. Finally, Tess did not want to be in her carseat. She wanted to be at school. She yelled at us in order to let us know this. She began the yelling as we got on I-95 South in Falmouth.  

Things we learned upon arriving at Boston Children's:
- evidently, everyone in Boston gets into their car around noon and heads out onto the roads for the rest of the day;
- Boloco, the only decent food option close to the hospital, has a line out the door pretty much all day except the morning;
- Au Bon Pain (inside the hospital) is closed at odd times while the hospital renovates the lobby; and
- Dana does not like the hospital cafeteria food. Nor do any of us.

The appointment went well, in some ways. The doctor had a bunch of ideas for preventing Tess from having reflux at night, including medication. He told us to give her the meds at night, because they have side effects--they'll make her very sleepy and very hungry. If you know Tess, and she's choosing between eating or sleeping, you have some idea which one she'll pick. We'll see how this goes.  

Anyway, things eventually went south. We were in the exam room with the doc for a long, long time. Tess started to go bananas. Dana somehow kept it together, but we knew we were running out of time. When the doctor began to examine Tess, for some reason he didn't ask us to put her up on the examining table. Instead, she remained in my wife's lap. And as the doctor stretched Tess out to her full length and removed her pull-up--well, I'll give you three guesses what happened. Our girl emptied her bladder. Onto my wife's lap. The sheer volume of pee was staggering. It made me wonder whether someone had slipped Tess a few cups of coffee earlier that day. She managed to cover her entire body, the pull-up, her whole outfit, my wife's jeans, and also most of the floor of the exam room. Afterwards she smiled and was really quite proud of herself.

This was our cue to get out of Dodge. Things we learned upon leaving Boston Children's:
- Tess knows to go, even if she is not on her usual frog potty and if we do not sing the goony songs;
- Dana's powers of coping are extraordinary, especially for a seven-year-old, since he spent an entire day of listening to Tess yell and basically doing nothing fun, and he never complained;
- swearing really does make you feel better (actually, we already knew this); and
- they sell adult sweatpants in the hospital gift shop.