Glowing in My Natural State

Doubtless, I'm still recovering from our busy September schedule, but I think that I'm also entering the more tired part of pregnancy. I never had much of that fabled second trimester energy burst, anyway. I often say that the second trimester is only high energy when compared to the first and third trimesters. (I'm in my 25th or 26th week of 40, so I'm still in the second trimester)

Anyway, late Tuesday morning, Ellie and I were driving home from visiting preschool classrooms, and I was so tired that I had a few moments of wondering if I was going to be able to make it all the way home. Fortunately, she crashed a couple of minutes before we pulled into our driveway, so I got a nap in my own bed.

Later that afternoon, there were a few things I really wanted to get done around the house, like moving her bookcase into her new bedroom and reorganizing the books, and I was so uncomfortable.

First, I was hot. I traded my pants for shorts but was still "glowing" vigorously so I ended up in nothing but my shorts and a bra for several hours. I'm sure this was a real treat for any unfortunate neighbors who happened to be about. (Ellie's room has no window treatments yet, and the front door was open as I strode about the house.)

And my belly kept getting in the way. The 511th time I bent over for a stack of books, I found myself wishing that I could just disengage the cumbersome thing and set it aside for a few minutes to get some things done.

It's times like these that I don't think my company is quite so ridiculous for treating childbirth as a "short term disability" like any other. My mobility is restricted. I can no longer regulate my own body systems the way I'm used to doing. Sometimes sharp pains shoot down my back/hip every time I take a step with my right foot. (I've tried just hopping along on my left foot, but that exacerbates the next two symptoms I'm about to complain about.)

Sometimes, when I have the audacity to sneeze, cough, roll over, or stand up imperfectly, I'm crippled by the most amazingly piercing pain as my distended uterus strains to break free from the weak ligaments tethering it to my body.

And then there are the contractions. I am annoyed by the term Braxton-Hicks (as if the contractions didn't exist before the one male doctor wrote about them 130-odd years ago). I am also annoyed by the suggestion that these contractions are "painless" or somehow different from the contractions of actual labor.

I've been through actual labor. The natural kind. And I can tell you that - for me - the contractions I feel from 20 weeks through the end of my pregnancies feel exactly like the contractions I felt during labor. They increase in intensity as labor progresses, of course, and become much more painful after my water has broken, but it's the same sensation.

Right. So now you know that being tired makes me a little grumpy.

IEP Elation

Ellie's IEP meeting was this morning, and it was wonderful. Really!

First, all the stars aligned. Even though my mother lives in Chicagoland and my sister got married over the weekend in Kentucky, my mom took a train down to St. Louis last night so that she could be here to support me this morning (she's already back home and planning to go to work tomorrow). Ellie's Regional Center case coordinator, her developmental therapist, and the director of her current school also attended to look out for Ellie's best interests.

I was prepared, showered, nicely and comfortably dressed, fed, and on time. Just early enough to be well settled and not bored before we started, actually. With a fresh bottle of cold water.

We discussed the evaluation results, only touching on the cognition score for the briefest of moments. And before I could say anything about it, the special ed teacher who was leading the meeting (and with whom I've had several phone conversations, and who's met and observed Ellie at school) added that the parents (that's us!) felt that this was a "very minimal assessment of Ellie's abilities in this area," and we moved right along.

We spent most of our time discussing Ellie's strengths, specific needs, and goals to meet those needs. Her new PT couldn't make the meeting, but she sent detailed notes and called us last night to go over them on the phone and make sure we agreed with her assessments (again). We loved her new OT. Her new Speech Path seems like she'll be excellent. The teacher seemed nice.

The preparatory literature we were given told us that our most important role in the IEP meeting was to remind the team that they were talking about a real person, our beloved little girl. This hardly seemed necessary - the meeting was perfectly cordial, considerate, and comfortable - but I passed around an adorable picture of Ellie at the beginning during the introductions part.


Ellie will be at a very convenient location, four mornings a week, with lots and lots of therapy, but all of it "push in" where the therapists work in "circle time" and "centers" where all classroom children are included in the therapy activities and she will not be singled out unless it becomes necessary.

She will be in a small class, more than half of the students without IEPs, currently only one other student with an IEP (though the balance is likely to end up closer to 50/50 by the end of the year). There are two other little girls starting around the same time, also just turning 3.

In short, it's perfect, it's perfect, it's perfect. And it's done. And Ellie is getting some phenomenal services in an environment with which we're very comfortable. The evaluation process was horrible, and I have been given an evaluation form that I intend to make the most of, but in the end I think it will be well worth it. Especially since at this age Ellie was spared the pain and will reap the benefits.

Bathroom Fouls

In high school and college, we had lists of "Party Fouls," which detailed specific guidelines for where it was and was not OK to puke. As an adult, I think it's high time for a non-binding list of bathroom faux pas, for general use in public restrooms.

1. Do not bring your food into the bathroom
   
2. If there are other empty stalls, do not select the one right next to an occupied stall
   
3. If you sprinkle when you tinkle - clean up after your own damn self!
   
4. Before leaving the stall, take a quick inventory. Is it at least as clean as you found it? Did your toilet paper actually make it into the toilet and down the pipes? Are there unsightly smears? Be aware that a second flush might be necessary. No blood. No visible feminine hygiene products or wrappings. Be neat!
   
5. Don't talk on the phone while you're on the pot.
   
6. If you plan to primp at the mirrors, be considerate. Don't block the only available sink or paper towel dispenser, and make sure that everyone at least has a chance to take a glance in the mirror without waiting in line behind you and your lipliner.
   
7. WASH YOUR HANDS

Anything to add? Contest?

Sister of the Bride

Saturday was my last time (I hope!) as the sister of the bride. When my parents introduce themselves to people now, they can officially say that they have three adult daughters, all married, all home-owners, and (nearly) 3 grandchildren. Wow!

My youngest sister made a beautiful bride. People say that about every bride, of course, but here's my proof:



Ellie made an adorable fairy flower girl, seriously:



And my middle sister and I are pregnant!



That was going to be a great matching bellies shot, but we don't really have one on our camera. Hopefully one of the ones others shot came out. I can't wait to see the professional photos!

Amazing. Married! Pregnant! We're all grown up.

Healthy, Wealthy, and Wise

I'm taking a night off. Hopefully I'll be back for Monday morning, refreshed and rejunvenated.

My friend who's been on bedrest (and for whom I've been arranging childcare) has had her baby! Paul's home! My sister's getting married on Saturday! Wahoo!

Weepy's World

I'm beginning to feel like a broken record. Perhaps I need to start blogging at a different time of day, like, say, right after the pumpkin spice latte I've been buying at Starbuck's this week. Yes, this baby gets caffeine and the last one didn't. This one had 1/2 a glass of wine before I knew that I was pregnant, too. She'll be fine. Or, at least, she won't be harmed by caffeine or alcohol.

So, more on Disney. After checking into our resort, we headed over to Disney-MGM Studios for the Playhouse Disney brunch. Ellie totally loved it, especially the dance numbers. She enjoyed Leo from the Little Einsteins, went nuts over his friend June (who she thought was Dora) and was thrilled to see JoJo and Goliath. My attention was elsewhere, and, for some reason, I couldn't stop crying.

Our little section of the restaurant had about 4 tables, seating a total of about 10 kids and their parents. 4 of the kids (at 3 of the tables) had Trisomy 21.

I had perfectly lovely conversations with both parents. All three other kids were adorable, wonderful, apparently healthy. I don't understand my emotional reaction at all, so I'll chalk it up to pregnancy.

Then we left and went to the Ralph's World show. Ellie was crazy for this show, even though she was nearly passing out from exhaustion. We skipped the autographs and pictures portion of the show to go back to the hotel for naps afterwards. But early in the show, Ralph invited all the kids down front to the "nosh pit," ("We often have snacks," hardy har har har) where they danced away for the rest of the show. Ellie loved this. And I felt like maybe Ralph and his guitarist were taking special note of our special little girl. I was still a little teary.

The next afternoon, we were at MGM again and had a little free time so we saw the show again (they played a different set each time, and the concert was only about 30 minutes long). Ellie loved the nosh pit even more this time, and this time I was sure of the personal attention; it was obvious.

As soon as he bopped out on stage, Ralph saw Ellie in the front row and acknowledged her. He jammed on over to his guitarist and nodded to Ellie, and the guitarist came down to the front of the stage to play for her. Several times.

Afterwards, we stuck around to meet the band, because we're groupies like that. As they were signing Ellie's new Ralph's World t-shirt (which she wouldn't let anyone else hold for the next several hours) and posing for a picture, Ralph told us that his younger sister has Down syndrome. Ah-hah! Not my imagination at all then.

Ralph's Work: Music For The Kids - They've released two childrens' CDs for charity, "For the Kids" and "For the Kids Too", benefitting people with Williams Syndrome, Down Syndrome and Autism. The song "At the Bottom of the Sea" appears on "For the Kids Too."

More: Order your cool Movers "Eight Feet" ringer T-shirt today. A portion of proceeds will benefit the Down Syndrome Association of Greater New Orleans and the Conductive Learning Center. Also stock up on Movers original music, video and apparel while you still can! Shop now


Napping after Noshing


Totally Noshing

Disney Rants and Raves

Have I mentioned that I'm so tired? Yeah? OK, well then I'll proceed with an analytical post, involving very little thought. Even less than copying from my travel journal to post about our vacation would require. This week I'm working full time and single parenting. I don't know how people do this for longer than a few days at a time. Seriously, this is hard. (And I have a cold. And I'm pregnant. Thanks for both conditions, Paul!)

So, on to what Disney does right. And wrong.

What Disney does right:

1. They make it easy. They're happy to send you a free vacation planning DVD (or 3) and their website has more than you could ever need to know to plan a vacation.
   
2. Plus, you can book your whole trip (airfare, park tickets, hotel, dining plan, add-ons) from the website or with a phone call, if you prefer the human contact.
   
3. If you go the phone route, you can add on all your entertainment and meal reservations too.
   
4. When you check in at the airport, relax. Disney will pick you up at the Orlando airport and take you by bus to your resort. When you check in at your resort, you'll get a room key that's also your "Key to the World" (theme park pass) so you can go out and start enjoying life immediately. When you return to your room, your checked luggage (which Disney picked up for you at the airport while you were busy relaxing) will be waiting in your room.
   
5. Free and easy transportation to everywhere in "The World" during your stay.
   
6. Your room key is all you need: to get into your hotel, to get into the theme parks, to use your meal plan, to buy food, to shop for souvenirs and have them sent back to your hotel room, etc. Just one card. And the fingerprint scanner thing at the park entrances is pretty cool.
   
7. When it's time to leave, it couldn't be easier. You can check in with your airline right at your resort, including checking your bags. Then go enjoy your last day at Disney, and a bus will pick you up to take you back to the airport before your flight. You go straight to security and your luggage will magically arrive with you at your destination.
   
8. After you book your package, Disney will send you little pieces of mail before your trip. They send mailings separately, so that you can have a pleasant surprise when you open your mailbox from time to time. (Oh look! Our luggage tags are here!).
   
9. Plus, each mailing comes with a reminder of the great goods and services you've purchased, so by the time your trip rolls around, you're feeling like the smartest gal on the planet for buying the trip.
   
10. The theming is amazing. No one does theming like Disney. Some of the resorts and attractions are just unbelievably cool. I've waited in a line without realizing it before, because the line part was so neat.

But as a frequent Disney traveler, I must say that they're not doing everything right lately, and I'm not talking politics here.

1. What the heck is up with Fantasyland? I know it's the original part of the park and all, but please! It needs some serious updates. Like more stroller parking or more space between attractions and some serious line redesign. How is it possible that the only lines boringly styled like 6 Flags or carnival lines are at the rides intended for very young children? Lame.
   
2. Service has gone downhill. When I went to Disney as a kid, I'd never seen a place so clean in all my life. Everytime someone dropped a piece of trash (bad, people!) a Disney "cast member" was there to pick it up almost before it hit the ground. No so anymore!
   
3. Also, the level of investment from the "cast members" has fallen off steeply. I don't know how Disney managed to get and keep such satisfied employees for so long, but they've apparently lost the knack. This trip, most of the cast members we encountered were just like employees anywhere else. For the first time ever at Disney, I got, "I don't know," as a answer, and more than once.

OK, enough of that. I'm trying to post some funny pictures, but Blogger is being hateful.

Disney 2005


Disney 2006, with proof that I'm pregnant and Ellie grows like a weed.

Rain in Dallas

I have a bone to pick with American Airlines. They don't offer any sort of compensation or financial assistance in the event of a flight delay or cancellation due to weather. On the surface, this makes sense. For example, if they had to give out meal vouchers whenever a plane is delayed 2 hours because of snow in Chicago, that would bankrupt the company even faster than its own business strategies.

But, on the other hand, if I'm traveling from a location with no weather delays to another location with no weather delays, and my flight is significantly delayed or cancelled because of a weather delay in an American hub city, well, that's an American Airlines problem, not a weather problem.

It seems to me that it would be a very good business practice to keep a plane and on-call flight crew available in at a least one accessible location so that when such a situation arises, a fresh plane and crew can step in to fill the gap.

Here's what happened yesterday and today. Ellie and I got to the Orlando Airport at 5:00 pm for our 7:10 pm flight to St. Louis on Sunday. (More on the rest of our trip later!) After clearing security - no small feat for a pregnant woman traveling alone with a toddler under the new security regulations and heightened threat level (Orange! As we were frequently reminded!) - we made our way to the gate, only to learn, eventually, that our flight was going to be very late or cancelled.

I didn't ask for $2 million to compensate for my heightened stress level. All I wanted at this point was cab fare back to the hotel where Paul was still staying (he's presenting at a convention this week, and spent the time Ellie and I were at the airport at Disney-MGM Studios, out to dinner/drinks with friends, and sleeping in an actual bed). I figured that we could spend a quiet evening at the pool, then try again with a morning flight. No deal.

Our plane was stuck in Austin, waiting to go to Dallas, where it was storming and there was a full ground stop in effect, then on to Orlando, at least in theory. So we waited and waited and waited as the chances for any flight at all diminished. Pregnant mama, exhausted from vacation, alone in the airport with a two-year-old, also exhausted from vacation. All restaurants and services closed, no vending machines. We were a pretty picture, I'm sure. Luckily, I was fully stocked with snacks and Ellie's willing to drink nasty Orlando not-so-soft tap water.

Our plane finally arrived in Orlando at 11:30 pm. But the crew wasn't legal! No worries; this had been taken into account. A pilot was called in, and a legal flight crew would arrive on a flight from . . . you guessed it! Dallas. They arrived after 1:00 am.

Did I mention that it was just Ellie and me at the airport all this time? With a lot of other cranky people? And no hand lotion in sight because of the new security regulations. (I get very anxious when I can't put lotion on my hands.)

Fortunately, our flight left Orlando for St. Louis by 1:45 am, with the pilots and flight crew reminding us throughout the flight that they were all doing us a huge favor; none of them wanted to be on this flight either.

We got home shortly before 4:00 am.

I was really late for my 8:00 am meeting, and Ellie was really late for school. But that's a whole 'nother frustration and best left out of this rant. There's a great picture of my angelic daughter (she did so well throughout this ordeal!) asleep in her first class seat earlier this morning. But, alas, I have no way to get it off the camera right now. I should also post a picture of the lovely flowers Paul sent me at work today.

But I need nothing more than to get some sleep; I have another early meeting tomorrow.

32

Ellie only woke up twice last night! Here's hoping that it was a step in the right direction and not just a fluke. I've been running around like a chicken with my head cut off lately. A sleepless chicken. I'm way over-committed and I don't see things improving until sometime in October. Hopefully.

I'll be back next week, but in the meantime I'll leave you with another quote from the awesome Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill. This one's from the essay on compromise.

Two things tempt us as parents to put the needs of the child with the disability ahead of our own or those of other family members. One is the anxiety and guilt that push us to do everything possible for this kid. The other is that the
things we do for our child are prescribed and are often monitored by professionals. Each time the physical therapist comes, she asks whether we've been doing the range of motion exercises, but no one comes by to check whether Mom and Dad have been out to dinner lately, or whether our three-year-old is getting her bedtime story every night.

8 Sentences

First: Tonight is Ellie's first night in her brand new big girl bed in her brand new big girl room. It's so high! There are no rails! (I did put a lot of cushions on the floor beside the bed, though.) She went to bed more easily than she has in weeks. She came to the door once and knocked, we ignored it briefly, and she climbed back up into bed (with the help of a two step stool!) pulled the blanket over her, and went straight to sleep! We'll see how the rest of the night goes.

Second, my homework for this week. I'm taking a fiction workshop this semester, and last week we read the most incredible short story in class. It was wonderfully crafted, intriguing, and perfectly complete all by itself. It was also 8 sentences long. Our instructor challenged us to follow a similar format for a short story to turn in this week. She did acknowledge that to do this well, we'd need lots and lots of revision time, which we obviously don't have. So presumably a mediocre effort will suffice. Here's my first draft; I borrowed the characters from an old NaNoWriMo fragment.

Clara was storing a box of newborn clothes and diapers in the basement when she stubbed her toe on a slightly dusty cardboard bin that turned out, upon inspection, to contain plaques from the wall of her old office.

She was still sitting on the floor, reading her old notes and commendations, when her husband came back from walking their daughter around and around the block until baby Cate fell asleep. After putting the infant in her crib, he stepped up behind Clara and rested his hands on her shoulders.

"I miss it," she said, "It doesn't have to be this, but it has to be something."

She couldn't see her husband's face, but his hands clenched her shoulders slightly as he said, "But what about Cate?"

Clara stood and walked outside, away from her husband, away from her child. She didn't stop walking until she found herself in the middle of a crowded cafe, twenty pounds lighter than usual without the weight of her child and its baggage. It was not enough.

JoJo and Goliath and Leo and June and . . .

My child is spending a lot of time in front of the TV lately. I don't like this, of course. In fact, I was "late" by some standards to let her start watching TV in the first place, and I limited her time in front of the tube pretty well, until lately.

She doesn't sleep anymore. Her naps have become shorter: 1 to 1-1/2 hours is all she needs now, but she does still need the nap. Especially since she doesn't sleep at night.

Going down to sleep takes a few tries, alternating turns between Paul and I, but it's not a major battle. (This is notable because for a while she was going down like a charm, soothing herself to sleep, then for a little while it became a huge screamfest, and now we're at an uneasy medium.)

Over the last 3 weeks or so, Ellie has established a new nighttime pattern. Her old pattern was: go to sleep (eventually) and sleep all night until 6:30 am. We didn't love the 6:30 part, but we were fine with the rest of it! Now we put her to bed, then she's up a couple of hours later, then a couple of hours after that, and then with increasing frequency for the rest of the night until by 4:00 or so Paul and I are taking turns with her because she's refusing to sleep at all.

She wants up into our bed, and in the interest of getting some sleep, I'm willing to allow that. But some nights she doesn't want to sleep. She wants to turn sideways and kick me ferociously. If I take her to the nursery and rock her, she'll yawn and relax on me for a while, then it's like someone flips a switch and she's full of energy, wide awake. Ditto if I put her in her bed and rock beside her in the chair.

If I explain that she needs to sleep until it gets light outside, then shut her in her room and leave, she is quiet for a little while then begins knocking at her door and crying. Presumably some parents can sleep through that. I can't.

So some mornings I just put out a bowl of dry cereal and a cup of milk, and turn on the Disney channel at 5:00 am. I'm not getting quality sleep while I know she's up and about, but I just don't have the energy for anything else, after yet another sleep-lacking night.

To be fair, Paul's taking the lion's share of the morning duties, but he's not in much better shape than I am.

Why? Why?! I hope this is a case of Ellie wanting her new bedroom and will resolve itself after she moves, but it will be at least another 2 weeks before her new bedroom is completely ready, and I'm sure there will be a transition time to the new arrangements after that.

Perhaps there's some obvious explanation or option that I'm missing because I'm so tired?

Remembering, a Midwestern Version

Those of us who weren't in New York or D.C. on September 11, 2001 had a very different experience of the events that day and in the months that followed. We didn't live there, continuously and unavoidably reminded of the trauma and the continuing fear.

But we were affected nonetheless, and many of us like to share our stories. I think this is because so many people were so profoundly impacted; whether or not we were actually there, we all experienced the events in our own ways and were changed by them. My father can tell you exactly where he was sitting and how many times his shirt sleeves were rolled when he learned of President Kennedy's assassination. I can tell you a confused rendition of my memory of the events of September 11, 2006, as a way of coping with what happened, with the forceful assertion that we, here, are not invincible.

In 2001, Paul and I were relative newlyweds. We were also new dog and house owners. I had a new job, which was keeping me busy, often for 12 hour days with a couple of business trips a month. Paul was working on a 10-month project in Kalamazoo, Michigan, home only on weekends. It was a stressful year, and we were arguing a lot.

Fortunately, his company didn't care where he flew domestically on the weekends, it didn't have to be back to St. Louis. So when I had a weekend business trip, he'd often fly to meet me and we'd have a little 1 or 2 day mini-vacation wherever my convention was being held.

In early September, I had a convention in Buffalo. I flew out a couple of days early and met Paul. We had a lovely weekend together in Niagara Falls, Canada, and spent a day in Toronto. On September 8th, were up in the CN Tower, the world's tallest target building. It was a lovely visit, then Paul flew back to Kalamazoo and I finished up my convention.

My flight back to St. Louis from Buffalo was scheduled to arrive around midnight Monday night, so I told my family and coworkers that I was getting back early Tuesday morning, so that I'd have a chance to sleep in a little and shower before heading into the office.

Tuesday morning, September 11, I was awakened by the phone. Paul called and told me to turn on the TV.

"What channel?" I asked groggily.

"It doesn't matter," he replied.

I saw the taped footage of the first plane hitting the tower over Katie's shoulder, and I saw the second plane hitting too. I was stunned and sat silently on my sofa thinking, ohmygod, ohmygod, ohmygod.

In those early hours, no one seemed to know what was going on, and this effect was compounded by the way we were all glued to TVs listening to newscasters tell us repeatedly that no one knew what was going on.

We didn't immediately know where the planes took off from, except that it was from somewhere out East. We didn't know how many there were, how long this would continue, what was going to happen next.

I called my (then) boss, who was in the office and wanted me to come in too. I stayed on my couch for a bit, and soon she called me back to tell me that the office was closing for the day, though she didn't know why, and I didn't have to come in. She, and her boss, were concerned with the work that wasn't getting done. I couldn't bring myself to think about that, let alone care.

I called a good friend and coworker who lived alone, and she drove over my house so that we could watch BBC America together. I went out to McDonald's to get us some food, and she answered a concerned call from my father, who was wondering if I had arrived home from upstate New York. (Remember, everyone thought I was on an early morning flight.)

Then I started worrying about my father, who was working in downtown Chicago, not far from the Sears tower. No one knew how many targets there were, how long this attack would last, who would be next.

I called Paul occasionally, but he couldn't talk much. He was a contractor on a project, being paid by the hour and expected to keep working. Apparently there was a TV on in a conference room, and someone would call periodic updates to the guys typing away in cubicles. I didn't understand how he could focus on what he was doing.

A day or two later, I still wasn't up for grocery shopping or cooking, so I was in line at Boston Market to get myself some dinner after work. I felt like I was living in a surreal little bubble. The women behind me had brought in their children after a soccer game, and were happily gossiping about something - anything - it seemed utterly unimportant and I wanted to turn around and angrily ask them how they could just keep going on like everything hadn't just changed.

Planes weren't flying yet by Thursday night, so Paul rented a car and drove home from Michigan, but he was on one of the first flights back out after the airports reopened. My first flight after 9/11 was a couple of weeks later, on a business trip to Sioux Falls, South Dakota. The airport and my flight were rather quiet and deserted, and I felt comfortable flying on a small plane to a place where the tallest structures seemed to be grain elevators and the stench of livestock met me as soon as I walked outside.

I never felt unsafe flying after 9/11, though I was certainly hyperaware of my surroundings and the other passengers for a while. I am still much more concerned with human error and mechanical failure when it comes to travel in a tin can in the sky.

Like most other people, I complained about the inconvenience of the new security regulations (mostly because people frustratingly seem unprepared when they reach security, rather than having their stuff ready to slip into bins on the belt) and having National airport closed.

But when I was on a sales call in Arlington in early 2002, I got a taste of what it must feel like to live somewhere less remote from the immediate danger. We were in a tall office building from which we could look over the Potomac and see the Pentagon. Throughout our meeting, planes regularly flew overhead, so close to the building would shake with each one. How could people work like this? Live like this? Surely blood pressure must be a major local medical concern? I could understand why so many people were moving further out into the 'burbs, or across the country.

I was never in any personal danger, but I was strongly affected too.

Sleep Diet, Reprised

• Number of times Ellie got up last night: We lost count. More than 5 that I can remember.
  
• How this compares to other nights over the past week or two: Par for the course.
  
• Time she woke up this morning for good: I'm not sure. Really early. Paul? Paul?! [SNORE]
  
• Length of Ellie's nap this afternoon: I don't know. It was in Paul's car on the way to pick up my car from the garage, just late enough in the afternoon to make bedtime tonight a challenge.*

I am so tired. And, also, very very pregnant. I think the two are probably related, but today I feel like a whale.

We had a weird experience last night. First, Ellie got her new orthotics, and they ROCK. I mean, they're just like mine, but cuter and much smaller! They're little inserts that fit into shoes. Regular shoes. So we went to Laurie's afterwards, to pick up some new Stride Rites. Some in her actual size, that aren't Extra Wide high tops to accommodate bulky AFOs. Wahoo!

We spent $100 on a pair of sneakers and a pair of black patent mary janes. Ack! But that wasn't the weird experience.

We were hungry after all that spending, Cici's Pizza was right across the street, and I'd heard that it's a good place to take kids. So we went.

After getting our drinks, Paul asked me if I'd noticed the young woman with Down syndrome at the table near the front. I had. But had he noticed that one of her dining companions had T21 as well? He had not.

Then I noticed that an elementary school aged girl two booths over had T21. And that the young woman and her dining companion were in fact part of a rather large party of young adults with Down syndrome all celebrating a birthday party (along with some chaperone-types).

And there was a woman making the rounds of all the tables, very chatty, who clearly had some sort of developmental disability.

And a couple on a date stopped me on my way back from refilling my soda to ask me some very intense questions about my pregnancy; I strongly suspected that they both had developmental delays too.

The restaurant isn't very big; it was dinner rush and the above mentioned customers comprised about half of the dining crowd. I was wondering if I'd stepped into some sort of Candid Camera situation, or if it was a special event that I didn't know about. Regardless, we fit right in!


* Oh, you caught that? Yes, my car's been in the shop this week. When my mom asked me what was wrong with it, I replied that it was getting 7 beautiful new 6-panel interior doors. Yes. My big fall home improvement dream "budget" went into my car for some obscure problem that I'm not sure really exists except as a phantom "check engine" light.

What a Weekend!

We'll consider this one prep work for our upcoming Disney trip. And in the prep weekend, I determined that although I'm still quite a bit lighter than I was last year at this time, I tire more quickly and am far more sensitive to heat. So Orlando will be interesting! I'm not hoping for a hurricane, but perhaps the spent aftermath of a mild tropical storm would be nice. You know, gentle showers and a slight breeze. Lovely! And keeps the lines short.

On Saturday we went to Meramec Caverns. I thought Ellie might be too young, but she seemed to enjoy the trip. She wanted to touch the coolest formations (strictly forbidden, of course) and Daddy carried her for the whole hour and 20 minute tour, because the guard rails weren't very effective.


On Sunday, we went to see the Cardinals game with friends, then had dinner with other friends. It was hot at the game, despite the lovely weather, so we bailed halfway through. We got a good show, though. Pujols came up to bat twice and knocked the first pitch over the back wall both times. Worth the trip!

On Monday, we went to the zoo along with the rest of St. Louis. Ellie was very into the animals, especially the brand new baby elephant, and wasn't freaked out by the monkeys this time. I think her favorite place, other than the pizza stand, was the herpatarium. Awesome kid.

Oh, also, I thought that it was way too early for Daddy to feel the baby moving. Turns out that it's not! So that's cool.

I'll leave you with a wonderful quote, then a picture of Ellie playing in the rain last weekend. The quote is from a book called Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara McGill, excerpted from an essay about how a psychologist, upon getting to know a patient who tested horribly, was surprised to learn that she was actually "full of promise and potential."

Often what others perceive in us as denial or false hope is really our experience of our child's powers, which are not seen by those who are looking for deficits and think they are the whole story. Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls.

Let us hold, always, this picture of our child in her completeness, even - especially - in the face of those who see her as decomposed, a collection of deficits.

I highly recommend the book.

Tabula Rasa

I'm doing OK, just still depressed.

Not the weepy kind of depressed, more the everything's heavier than it should be and takes a lot more effort, especially going to bed at night and getting out the door to work in the morning kind of depressed.

But it's turning into fall, which is both my favorite season of the year and a season that almost requires a bit of melancholy. Also, there's a three day weekend this weekend, I have a birthday coming up, we're going to Disney World soon, and my sister's wedding is only a few weeks away.

Plus, Ellie's birthday, Thanksgiving, and Christmas are right around the corner. Visits from family, lots of holiday festivities, and then - before you know it! - New Baby arrives!

On another positive note, those of you who've been to our house would not recognize the Chinese guest room. For one thing, it has no furniture except for a tiny desk and computer in the center of the room. For another thing, there are no window treatments and nothing hanging on the walls. Without all the gold fabric and reed/bamboo accents, that small room is a little echo-y. Last but not least, the walls are no longer red! They're a lovely shade of 3-coats-of-primer-white. The Big Girl Room is coming along! (All thanks to Paul, of course.)

Pictures soon. Downloading from the camera seems like a lot of work right now. Happy Labor Day weekend, Americans!

Honesty, then a little more anger

Another thought on the whole evaluation process.

There are main two reasons why this label thing bugs me so much, a "good" reason and a "bad" reason.

The "bad" reason is because intelligence is important to me and I attach more importance than I should to "measures" like IQ and labels like "smart." I've always known this about myself; it's something I struggle with daily and have for the past 3+ years.

The "good" reason became clear to me earlier this evening when I was talking to my youngest sister, the social worker/family therapist. Although she has to use similar tests and labels all the time at work, she hates them and makes a point to devalue the results to the kids and families she works with, for obvious reasons.

She pointed out to me how dangerous these labels can be, for people who take them too seriously. Part of the reason that Ellie is doing so well is because we expect so much from her. And if we (as a society) start dramatically lowering parents' expectations of their kids, that can have a profoundly negative effect on what the kids achieve.

That's not an issue with us and Ellie, but I am concerned that it will be an issue for Ellie with her new teachers and therapists. Imagine that you're a teacher and you're getting a new student diagnosed with a developmental delay.

Imagine how you might treat this child, if you're told, "This student should be able to keep up in your class. Please let us know if any difficulties arise."

Versus:

"This student is severely cognitively delayed. She will have an aide in here with her full-time to help her keep up, and she will be pulled out of class for an hour each day for special instruction and therapies."

Sure, the teacher might know that the tests are skewed at this age, but her expectations can't help but be different depending on what she's told about the student. We all know about the importance of first impressions.

I've heard far too many stories of kids with special needs not being held to the same behavioral standards as their peers (when appropriate, of course) and consequently not achieving everything that they're capable of achieving.

This is why I will reject any such labels being in the IEP report, and will insist that Ellie's given more appropriate labels or none at all, if the services she's offered seem inappropriate. I don't want the system to hurt her development; I want it to help her!

So far, most of the people involved with the evaluation process seem to be of the mindset that "the more therapies she qualifies for, the better!" I disagree. More is not always better; sometimes more is just more. Like the extra square of pizza I ate after dinner tonight.

Evaluate This

I'm not going to mince words. Today sucked ass.

Fortunately, I've moved beyond tears into anger, which is a far superior place to be.

Yesterday was Ellie's Individualized Family Service Plan (IFSP) 6-month review. Twice a year, the program director at Ellie's school, each of Ellie's therapists, her state early intervention service coordinator, Paul, and I all get together. We go over Ellie's progress over the past 6 months toward achieving the goals we set last time, then we set new goals for the next 6 months.

Yesterday's meeting was our last IFSP, because Ellie is in the process of transferring out of the early childhood program and into the school district. From her third birthday on, Ellie will receive preschool and therapy services through her school district rather than through the First Steps program. This transition involves a lot of meetings, a lot of paperwork, and a LOT of evaluations.

I expected it to be painful.

I didn't expect it to be this bad.

Yesterday's meeting went very well. Ellie has made incredible progress in all areas (speech and language, gross and fine motor, adaptive/self-help skills, and cognition) recently, and it was, frankly, fun going over her progress with her team. We have a good team. Things are going well. Time to upset the apple cart.

We were at the Special School District preschool evaluations office for 4 hours today, and Ellie did fantastic. She was in a good mood and she was compliant, but she also showed all sides of her typical personality so that the evaluators could see this is what she's like when she's frustrated, etc. She was amazing and the evaluations process seemed to go very well, though Paul and I couldn't watch most of it. We were in the room next door being interviewed, one at a time, by each of the 5 members of the evaluation team. That wasn't totally fun.

The team went aside to talk for a bit, then came in to go over their report with us. (We'll be receiving a copy in the mail in a couple of weeks). In reverse order, we heard from the speech pathologist, the PT, the OT, and the school psychologist. The evaluations of Ellie's speech/language and motor skills were perfectly aligned with what we're seeing at home and what Ellie's current therapists are seeing. The delays found were unsurprising, and we were pleased that she qualifies for speech, OT, and PT through the school district. We were also pleased with how positive the evaluators were about how Ellie's doing, how far she's come recently, and how she's likely to progress in the months to come.

But first we heard from the school psych about Ellie's social, behavioral, adaptive, and cognition scores.

It's worth noting, at this point, that Ellie's current preschool teachers tell us how well she keeps up in the classroom, mostly full of typical kids (there's one other little girl with Down syndrome). Her Developmental Therapist, who sees Ellie at home and at school and is a former special ed teacher and school diagnostician, tells us that the only thing that keeps Ellie from participating fully in class is her occasional stubborn/defiant behavior. We haven't had any real "cognitive" goals recently because she met the big one: plays appropriately for her age and with other children in the classroom.

So this school psych evaluator woman tells us that Ellie has moderate delays in adaptive behaviors/motor. Yeah, we know that she's nearly 3 and isn't fully potty trained yet; can't dress herself, and still sticks out her tongue when she drinks from a straw, etc. No surprise.

Social Interaction and Communication: high score.

No behavioral delay.

As far as cognition, here's what she can do (all according to the school psych):

• match colors
  
• label pictures
  
• age-appropriate puzzles - though a little slow
  
• put pegs into a pegboard
  
• understands pronouns
  
• discriminating between objects
  
• interest in listening to a story, pointing out pictures that go with the text, making animal sounds, etc.

Now for the verdict. Ready?

Severe Delay in Cognition.

WHAT THE FUCK?

I'm a bit flummoxed, of course, so I incoherently press for more details. Well, she can stack 5 tiny blocks. She should be able to stack 6-8 of them.

Um, OK. That's more fine motor than anything else. And a one block deficit is so totally not SEVERE. WTF?!!!

She gave Ellie a developmental age of 21 months, which is also totally hogwash. I know 21 month olds. I see how they play. They are more into pushing a car and throwing a ball then they're into ordering, phase 2 in imaginative play. For example, Ellie loves to give her doll something to drink, then undress her and put her on the potty, clap for her, wipe her, then put on a diaper. This, for the curious, is very age-appropriate play for a 34 month old.

I know there are delays. I am not hiding my head in the sand here.

Still. I also know that there are lots and lots and lots of kids who are much much worse off than Ellie. And I know that "severe" doesn't come close to describing this kid who can play Hi Ho! Cherry-O and talk to the baby she can't see but knows is growing in mommy's tummy.

So. I don't note a severe delay in Ellie's cognition. Ellie's current developmental therapist doesn't note such a delay, nor do her classroom teachers, nor her grandmother, who's also an elementary school psychologist who does this evaluation stuff for a living. Ellie's pediatrician, who specializes in kids with Down syndrome and has one of her own, is convinced that Ellie does not have severe (or even moderate) cognitive delays.

This is how I've moved from the tears to the anger. The eval was wrong. Flat wrong. Worse, the scale was off (Mom explained the scales to me, and I suspect this particular interpretation has a lot more to do with the Special School District drumming up business for itself by qualifying kids for more services). And the instrument was faulty.

My mom's school district only uses this particular test with kids who are totally non-verbal and there's no other way to test them. (Note: the ceiling on Ellie's single-word vocabulary was 3 years and 11 months; not quite "non-verbal" but rather a whole year older than she is.) My youngest sister was evaluated with this tool when she was 6 months old.

So I'm even working through my fury.

But I'm still a bit sad and mad and depressed that it looks like I'm going to go into Ellie's experience with the school district having to fight for my daughter, when I was hoping against hope that we could all just get along.

And at the Individualized Education Plan (IEP) meeting in a few weeks, if they come back with ugly words like "severe cognitive delay" and want a ridiculous amount of apart-from-typical-kids time for Ellie, I'll be ready to go to bat, threatening a lawyer and demanding that she have a new eval by a new evaluator, and refusing to sign the IEP until it accurately reflects the needs of the daughter I know and love so well.

He Just Makes Me Uncomfortable

There's danger in "I feel" statements, especially when we don't examine them closely enough.

Our culture has taught us that our feelings are valid, that we should pay attention to how we feel, and that we should honor our concerns. Gone are the days of suck-it-up-and-deal. We no longer feel obligated to spend Thanksgiving sitting quietly next to the great-uncle who molested us; we can speak out and refuse to attend the family celebration if he's going to be there.

At least, that's the way it's supposed to work.

But there's a big potential downside here, too, and I noticed it at work several years ago when my company started hiring security guards to walk the office halls after hours.

These men are there, ostensibly to make the employees - mostly women at my company - who work late feel safer. They have the opposite effect for me.

For one thing, the constant presence of the security guards reminds me that there is something to fear. More importantly, the guards themselves are sometimes quite creepy.

One guard had few teeth, incredibly offensive body odor, and a really bad habit of standing too close to me, while effectively blocking the only way out of my office, and talking to me for far too long. Dude, I'm not at work at midnight because I feel like chatting. I'm here because I'm on a major deadline and I'd really like to just finish up and get home to bed as soon as possible.

He creeped me out so much that I took to carrying a metal letter opener with me when I left my office to walk to the bathroom at night and on weekends, and I kept it within easy reach at my desk when I thought he might be stopping by. I also asked Paul to come by occasionally to bring me dinner. I called home to check in regularly too.

This guard was white, and as far as I know he was never fired. (When I came back from my year off, this particular guard was gone but he'd been there quite a while and might simply have left the job for another one.)

Another guard, who started around the same time, put out a completely different vibe. He was incredibly nice. He too would talk to me when I worked late at night, and I wished he would just let me work in peace, but his air was far less threatening. He never blocked my office doorway, and he never talked about violence or danger.

He was black, and he got fired after a few months. Some of my coworkers complained (anonymously, of course) that he made them "uncomfortable." When pressed, no one could provide an example of exactly what this guy had done wrong, but just being alone in the office with him at night was "uncomfortable" for some of my suburban, white, female coworkers.

Maybe he stood in the hallway and chatted with another male employee (also black, also fired) where they had a clear view of the women's restroom. Of course, there's a clear view of the women's restroom from just about anywhere in the main hallway. But that was enough.

A weekend janitor was recently fired for a similar reason, and, in fact, it turns out that an awful lot of the black men in maintenance, janitorial services, and security are fired because of employee complaints of "discomfort." The official reason given is usually something about chatting in the hallways at work, though we all do that, or no reason at all for the sub-contractors like the security guards and janitors.

This is insidious and hard to prove, but it's racism all the same. Why does this particular security guard bug you? Does he stand too close? Spend too much time gleefully reminding you of how vulnerable you are? Regale you with tales of strange cars parked near yours in the parking lot? Remind you of how he knows your license plate number, and point out that you two are the only ones in the office this late? No? Hmm.

I wish I knew how to fight this. I wish I knew what to do other than to get futilely furious.

Little Geek

All weekend I've been reading about how surprisingly fat our kids are today. About how little exercise they're getting, and how unhealthy they'll be tomorrow.

So on Saturday we had Ellie take Lizzi for a walk, which went surprisingly well. She's been wanting to do this since she was about 6 months old, and, finally, she can do it, full control of the leash and all. You know, over the past month or so, this kid has really made huge leaps. She's seeming so . . . grown up.

This morning we skipped church and spent an hour playing outside in the rain, stomping in puddles, walking up the block in the rushing gutters, pushing a toy car through rivulets, riding a trike around and around the driveway, and, best of all, playing with the umbrella.

(By the way, Ellie's BMI seems to be 15.5, well below the average for her age.)

So tonight, we stayed inside and played Hi Ho! Cherry-O. I can't tell you how excited I am that we're officially entering the Board Game Age. May it never end for Ellie, as it hasn't for me. Even though she cheats like mad. Don't think I didn't notice you scooping up those extra cherries, little sneakie!

Techno Wiz

I spent much of Tuesday unable to use my computer because 2-1/2 year old Ellie changed the administrator password and locked me out.

"That's impossible," Paul said when I called him, "You have to type the new password twice."

And that did turn out to be the key. I knew that the password wasn't the same as it had been, so she must have changed it. Ellie had cleared the field, using the touchpad that I struggle with and she seems completely comfortable with. And then she hit enter twice. So she cleared the password and changed it to nothing. Awesome!

Yesterday morning she did something to the TiVo. She didn't activate the KidZone controls, but she did use the remote control to lock it up somehow so that we couldn't pause the live TV. Or change the channel. Or view the TV Guide. Or access the TiVo menus, including "Now Playing." So, basically, until Paul came back from Orlando, our choices were no TV or all Nickelodeon, all the time. Wahoo!

I built my own PC in college, going to a computer show to buy each component cheaply from various booths. Unlike most of the people I work with, I'm completely comfortable with Internet bulletin boards, and I totally know what a blog is. I never thought I'd turn into a tech dinosaur so soon!