The Season

Project Christmas Hat is 6/10 complete. On a related note, all of my nails are broken and the skin on my fingertips is extremely dry.

Still to come: Project Christmas Candle, Project Christmas picture, Project Christmas Letter, Project Christmas Baking, Project Christmas Open House, and Project Christmas Presents. (Project Christmas House is relaxingly completed.)

Baby news, in case you're interested - and of course course you're interested! - Teddy is now 8 months old. 8 months! He's a confident sitter and is starting to get onto hands-and-knees to lunge forward. He'll be crawling before long! He is also beginning to wave. Today Paul asked Teddy, where's my mouth? Where's my nose? And Teddy reached out and touched the appropriate parts at the appropriate times. So cool. He's talking, too. By which I mean that he knows, gleefully, "Dadadadada!" for his father and "Ah-duh,ada,ada,ada" for his sister. Also, angrily, "Mamamamama!" for me and, occasionally, a cheerful "Hey!" for hi.

I love this kid. So glad we added a third.

(So are the girls. They're also nuts about Christmas. But now I need to catch some sleep; Teddy has a cold, is cutting 4 teeth at once, and will have me up before long!)

Seen on President's Day at My Daughter's School

Some of their parents have angry bumper stickers on their cars. Some of their parents believe that health care - and food - are privileges, not rights. Some of their parents might even belong to groups that wish the President dead.

But these first graders have different priorities.



If I were President I would . . .

Empty my bank account and give the money to poor people.
Stop wars.
Help homeless animals.

Every single child in this particular class wanted to be a Good Samaritan. Every single poster talked about helping people or animals in tough situations as a first priority. Every single one.

I loved the novel The Help by Kathryn Stockett. One of the most memorable parts - never elaborated on, never explained, but perfectly clear nonetheless - is black maid/nanny Aibileen's firm insistence on never caring for white children over age eight. The novel is set in Mississippi in the early 1960's and Aibileen is raising her 17th white child. She feeds them bottles and changes their diapers. She plays with them and potty trains them. She sends them off to school. But before they begin to see her as black, as other, before they start treating her as their parents do, she moves on to a new family.

We teach our children about kindness and generosity and manners and giving and thanksgiving. Inclusiveness and thoughtfulness. But we teach them other things, too. I see this in my own children. I see the way my six-year-old stomps off to be alone when she's angry. I hear the way my three-year-old can say "fiddlesticks" as though it's a vile curse. And I know: this, too, they learn at home.

On the balance: what do we teach our kids? And who will they become?

These Are a Few of My Favorite Things

that my kids say:


After two solid days of trying to convince Paul and me to go out on a date so they could stay home with a babysitter, the girls gave up and tried a new tactic.  "OK, now Ada and Ellie go out on a date. Mommy and Daddy stay here with Janelle!"  Tempting . . .

"Shoe-kick" is Ellie for music.  And it's wonderfully descriptive, don't you agree?

"Some-evabody" is Ada for both somebody and everybody, depending on context.

"Assinick" is Ada for accident.  It's pronounced "ass-in-ick."  And again, I say, these kids are powerfully good with description.  I could learn from them.  (As a sidenote, let me explain that Ada believes that a "car accident" is a messy result of two cars slamming into one another. See illustration, above, for the source of her confusion. Go, Dog. Go!)

Have I mentioned that Ada's two stuffed dinosaurs are named "Bite" and "Chewy," respectively?

Today, Ellie had her annual visit with her cardiologist.  (It went very well.)  At one point, as the doctor listened to Ellie's chest and described what she was doing/observing, Ellie said, "Just like a scientist!"

Just like a scientist, indeed.

It's all linguistics over here.

In the Mirror

I keep talking to people who are really bad at ending conversations.

Eventually, I recognized the common denominator.

Hooray for Crunches

This is a blurry, awkwardly cropped, unflattering picture of me taken by my elder daughter last week. (Relevance to follow, but in the meantime I'll note that I was very proud of Ellie for looking at the camera display to frame the shot.) 

"Your daughter is adorable," an elderly man turned to me at dinner, after chatting with Ada.  I stood to clear our plates as he continued talking. "And she's going to have a little brother or sister."

"Thank you, and, no, that's just me."

Seriously. I get this all the time.  I used to think it was because of my affection for over-size clothes, but on this particular occasion, I was wearing a stretchy twin-set, cut relatively close to the body.  So it must just be . . . me.  The fact that all my pants are a size or two too big and give me extra pouchiness where I don't need it doesn't help.  But I'm hardly headed for the delivery room, regardless. The picture above was taken after dinner that same evening. What do you think? Am I accidentally in maternity wear?

Next week is Ada's last mommy and me dance class, which means only one more session of me allowing the instructor to think that I'm pregnant.  She never asked outright so that I can deny it, she just makes little comments, like, "This exercise is important for you mommies, especially you down there in that pink shirt looking absolutely adorable today."

It took me a couple lessons to realize that she thinks I'm expecting. And by that time there was no way to fix the problem without embarrassing everyone.

I'm thinking maybe I should just drag out my maternity clothes and pretend to be pregnant all the time. Heck, I'll be comfy and avoid some awkward conversations. Where's the downside?

I. Am. Not. Pregnant.

I figure that I've got two choices, if I want people to stop asking me if I'm pregnant/when I'm due all the time.

1. Lose weight, or
2. Stop wearing such loose-fitting shirts.

But you know what? I think my weight is my own business, unless I'm physically taking up some of your space (I'm not, by the way). And I like my loose-fitting shirts, no matter what size I am!

So that leaves me with one "choice."

1. Get over it.

It's not like I run into a corner and sob when this happens. If I did, I'd spend time crying in corners a few times a week. But I do still find it mildly annoying, surprising, and invasive every time it happens.

Except when that waiter spontaneously brought me a refreshing glass of lemonade last week. That was OK.

Two New Languages

Ellie had a little tickle in her throat last week and was having a some trouble with it as she and Paul were walking at the park on Friday night. "Give a big cough, just like this," Paul directed, demonstrating. "Is that better?"

"Si, un poco," Ellie replied. (Yes, a little.) Like it was nothing! Just . . . Spanish! For fun! Bless her heart.

But that impressive display was the lesser of Ellie's two big accomplishments in expression for last week. When it's time to color, she scribbles in the middle of the page for a while and then is "all done." Her OT believes that this is because of Ellie's fine motor weakness; holding a pen or crayon properly and carefully drawing lines or coloring in entire pictures is hard work for her. But during their session on Wednesday, Carmen asked Ellie to draw a picture of herself. As usual, Ellie started to scribble.

Carmen gave her a new sheet of paper and said, "You need to start with a circle for the head."

For some reason, that really "clicked" with Ellie. She drew a head, hair, eyes, nose, arms, and legs, explaining each piece as she drew it. Amazing!

I'm Adverb Happy

I'm a writer. So of course I think about language. I think about it a lot. I have my little quirks and idiosyncrasies, little stylistic flourishes that I like to (over)use. I think about how to say it, not just what to say. Or, at least I do that sometimes.

With all this daily blogging, I also get a little lazy. And not just in my blogging. I get focused on story, on what I want to say, and don't always pay quite enough attention to exactly how I'm saying it. I might agonize over a word or a phrase here and there, but probably not every word, every phrase, or even every sentence.

I met with a new critique group for the first time, today, and it was a humbling experience. I am most definitely the junior member of the group, in terms of age, experience, and publication history.

They liked my story, which is a good thing, and had some very nice things to say about my dialogue, descriptions, and ending. But they really smacked me on my weak spots: adverbs, unnecessary words, passive constructions, overlong sentences, "was," "that," and so on. The sorts of things that get manuscripts rejected for being, "not quite polished enough." (See above. And below.)

I know better, I really do. And not all of my sentences are bad. But the really bad part is that even knowing what needs to be fixed, I have a hard time seeing incidences of the mistakes I know I'm prone to making until someone points them out to me. This makes revision a challenge. I write very much by ear, by what "sounds right" to me.

I hope that someday I manage to break my bad writing habits. I hope that I can develop a style that "sounds right" to my ear without losing what makes my voice . . . my voice.

It's not all bad news for me. At least this story wasn't cluttered with cliches. I can learn! And I was pleased that I was able to listen to all the criticism and take a lot of it to heart without feeling hurt or defensive, or letting the "constructive comments" completely bury the praise.

I didn't accept all of the suggestions - like the ones that involved ditching my main characters and making a minor character into a pedophile; that's just not the story I'm writing - but I saw the wisdom in all of them, I saw the reason why the reviewers were making the suggestions they made, even if I didn't agree with the way they suggested I solve the underlying problems.

(Now isn't that a fabulous sentence.)

I have a lot to improve. But I feel motivated, not defeated. I know that I will get to a place where I'm more practiced at storytelling, so that parts of this work come more easily and naturally, allowing me to focus more closely on finesse. (easily, naturally, closely)

On that note, I'll head off to bed. But not hurriedly.

The R Word

There is a big campaign out there about the r-word. I haven't been at the forefront of the movement, although I do support it. I have posted before about how Language is Powerful and about the movie Tropic Thunder.

There's nothing wrong with the actual word, all by itself. "Retard" means to cause to move more slowly or operate at a slower rate. It's very descriptive. But it definitely has become a pejorative term in our society.

If not addressed, underlying prejudices will color any subsequent descriptive terms of choice with an unpleasant, negative association as they too begin to be used as insults. (In much the same way that in my lifetime I've seen a progression of words used to describe groups of people from various racial, ethnic, and religious backgrounds.) But that doesn't mean that it's OK to keep using outdated terms once they've become passé.

And the word "retarded" has clearly passed that point. The Association for Retarded Citizens has renamed itself The Arc, formally removing the word "retarded" from its description and acknowledging overwhelmingly negative connotations with the word. The American Association on Mental Retardation changed its name a couple of years ago to the American Association on Intellectual and Developmental Disabilities. And as for the clinically diagnostic use of the term "mentally retarded," well, that does still exist in the DSM-IV, though that document itself is significantly outdated, and many practitioners, evaluators, educators, and others who deal with people with developmental disabilities are very careful about using the loaded term.

Recently, I was involved in an discussion board thread about "the r word." The problem was that the thread wasn't supposed to be about the term, but the mom writing about her son used it several times.

A shorter copy of the original story was also posted on a blog I read, here. In short, a woman is going through an incredibly frustrating time trying to get her (undiagnosed) son the help he needs. Of a conversation with an evaluator, who has commented that the boy will have a hard time qualifying for a particular service because his cognitive score is normal, the mom writes, I, being pissed off and disinclined to be PC about the whole thing, said “Truly? You only serve r****d children?” To which she replied, “No, no, most of the children we serve are not r*****d at all! It’s just that by the time we get to them, they’ve been so neglected that they’re TESTING as r*****.”

The original post on the discussion board was uncensored, and in response I brought up my discomfort with use of the term in this way. A very interesting discussion ensued. I don't want to keep bumping a thread about a difficult situation for this woman and her family, but I do want to respond to a couple of issues the conversation raises, so I will do so here.

First, I think that calling hurtful language merely "not PC" belittles the complaint.

Second, I don't think that being angry justifies using hurtful language. Most of us slip up and say unpleasant things sometimes, but that doesn't mean that we should get a free pass.

Third, I think an apology that includes a "but" isn't much of an apology. Similarly, saying "I'm sorry for offending you" or even, "I'm sorry that you were hurt by what I said," is different from saying "I'm sorry that I said something hurtful and offensive." Because, in a situation like this, I am not personally hurt. I am not looking for a personal apology. I'm just raising awareness that this sort of language is hurtful and offensive to many in the community of people it describes. And, as such, it is unacceptable.

Fourth is the idea that intent matters, that if the speaker doesn't see a word as negative, then it's not. There's something to that, in that it's possible to be ignorant of changing standards. That's why people who know better should speak up and explain. Once we know better, we can and should be more thoughtful. In this case, however, the "intent" excuse doesn't really fly, if the anecdote is shared to demonstrate the evaluator's inappropriate usage of the term. The mom either knows that it's an inappropriate thing to say, in which case she shouldn't have said it, or she doesn't know, in which case the evaluator's parroting back of the term doesn't raise any red flags.

In this discussion, I was accused of wanting to "ride [my] "r"-word hobbyhorse," and just showing up to "give [the mom] a spanking."

I hope (clear and insightful writer) Kay Olson doesn't mind if I quote her, because I loved her response so much:

Language usage issues always look like they have popped up out of nowhere, but they never really do pop up out of nowhere -- they are there in every conversation until someone does exactly what Sarahlynn did here and make them part of the discussion. Then, predictably, as here, the person gets blasted for going off-topic or missing the point or tone of the conversation. The invisibleness of problematic language until someone has to make a stink to bring awareness to the use of that language is the whole problem.

Language usage issues like this are not a simple matter of "etiquette" and "courtesy," unless, of course, you are completely tuned out to the historical and ongoing oppression and prejudice they contribute to. It's not just "rude" to use the N-word or the C-word, and it would be dismissive to excuse that language as just rudeness and use of something that has "fallen out of fashion."

All that said, I appreciate your apology, [J's Mom], and apologize in return for seeming insensitive to your family's struggles. I hope this clarifies where I am coming from.

Tropic Thunder

I am very, very tired. And I have just finished as much of my homework as I can complete tonight, so I'm going to bed. Soon.

In lieu of creative, original content from me, I'm linking to an incredible review of the "best comedy of the summer," Tropic Thunder.

As you might or might not know, disability rights groups have called for a boycott of this movie. And it turns out that "un-PC Language" is not the worst of its crimes.

Rejecting the (lamest of the) 21st Century

A couple of weeks ago, I mentioned that someone at the pool asked me if Ellie and Ada were my grandkids. Ah-hem. But what really makes me feel old is when new stuff catches on that I just.don't.get.

As you see, I'm relatively young and hip. I know how to separate words in a sentence with periods for emphasis. I blog and am not afraid of YouTube. I've tried messenger and think it's largely a useless time-suck, but I'm OK with that. (I think much the same thing about the telephone. Your mileages may vary.)

But Leetspeak? LOLCATS? Twitter?

Argh!

Never.

No, really, never. This isn't like blogging where I spent months frustrated that some of my favorite bulletin board posters were spending less and less time on the boards because they were blogging and reading blogs, and then jumping on the bandwagon myself; quitting all discussion boards cold turkey and starting this blog a couple of months later.

(In that case, I was mostly frustrated because I missed the company of some e-friends, as if a face-time friend started hanging around somewhere else instead of our usual spot. After a while, I decided on a change of scenery and ditched The Spot myself. And eventually I started running into several old friends from The Spot around new digs, Le Blogosphérè. Blogging is a very useful medium of communication for busy folks because one can read and write whenever and the posts are more static than in most electronic media (e.g. messenger, Twitter, discussion boards) and more public than email.)

I honestly don't get the appeal of Twitter. I understand what it is and how it's used (especially for businesses) I just.don't.get.it. Two main things: "micro-blogging" isn't my preferred form (to write or read) and also the subscription options. I think we spend far too much time contacting each other remotely anyway (cell phones, emails, texts, etc.) and should be dialing back on that and focusing more where we are in the moment rather than who's on the other end of the damn iPhone.

Egads, I'm a dinosaur!

Second, LOLCATS. Kill me now! First of all, I don't much care for cats. And if I did have a cat, I'd care a heck of a lot more for my own cat than for pictures of other people's cats. (I'm much the same way about my own dog and my own kids.) But I have no problem with people sharing pictures of their cats. Just don't email them to me unless I know you and your cat.

But lolspeak? Nooooooo! How is this cute? Why is this accepted by people who otherwise demonstrate signs of being older than 11? I don't like baby talk for babies, either, and even if I did I wouldn't post it on top of pictures of my (amazingly beautiful and adorable!) girls and submit it all over the internet. Ugh.

Finally, Leetspeak. 1337! Can I sit at your lunch table now? As an adult, I'm quickly irritated (me? never!) with things that smack of exclusivity for the main purpose of, well, just being exclusive and isolating, the whole in vs. out dynamic. It's so very junior high in the 1980's. I sat at that lunch table, and I've left it far behind, thankyouverymuch.

I'll let Wikipedia speak for itself, here:
[Leetspeak] is now also used to mock newbies, or newcomers, on web sites, or in gaming communities.
The term is derived from the word "elite"
often it is seen in situations where the argot characteristics of the system are required, either to exclude newbies or outsiders in general.
Unrelated annoyance: Another common feature of Leet is over-exclamation, where a sentence is postfixed with many exclamation marks.

No, thanks.

Please feel free to step on up in comments and defend yourself and your love of Twitter, lolcats, or l33t.

--n00b

When You Grow Up What Will You Be?

I was right; today was hard. And it's not looking like I'll be perfectly well rested tomorrow, either. Alas.

But I'm going to choose to focus on the positive tonight, instead. This is going to be one of those posts where I catalog the wonderful things my children are up to (in this case, Ellie) probably interesting nobody but myself (preserving for future reference) and possibly others who know my children well and follow their lives from afar, like their grandparents.

Ellie's been obsessed with a book they read a couple of weeks ago during beach week in summer school, called There Was an Old Lady Who Swallowed a Shell. I could not find this book anywhere, so I ordered it from Amazon.com and surprised her with it today. It was like Christmas in July! She carried that book around all afternoon and wanted it read over and over and over. It was the only bedtime story she wanted her daddy to read, tonight, too. So cute.

I love her developing preferences. I also love that she started independent swimming lessons this week and is doing great! She's going into the water without me and without complaint (all those trips to the pool in June really paid off) and is participating appropriately with her class. Yay!

And after a few weeks of accident after accident after accident until I thought I might go crazy, she surprised me today by taking care of a major potty need all by herself. With no mess! This has never really happened before. Although she usually manages her own potty schedule, she still needs help undressing, getting onto the toilet, wiping, washing hands, redressing, etc. And she didn't quite complete all those tasks on her own, today, but by the time I realized that she was in the bathroom, the critical bits were finished. Wheeeee!

We had the best discussion yesterday, by the way. She started singing a Dora the Explorer song about what you want to be when you grow up (for some crazy reason, I bought her the 44 tune soundtrack for her second birthday. "I'm the Map, I'm the Map, I'm the Map, I'm the Map, I'm the Map!") so naturally, I asked her about it.

"Ellie, what do you want to do when you grow up?"

I want to work!

And drive!

Drive to work!

In Daddy's car! By myself!

How cute is this? How perfectly preschool! This child has special needs? Where?

Naughty Words

While I was changing Ada's diaper the other day, she was vigorously swinging the octopus toy that hangs over her changing table. On one particularly energetic pass, the heavy plastic clip that attaches the toy to its hanging string whacked me in the eye. I have no idea how it missed my glasses and hit my eye so hard, but it did a real number on me, as my father would say. Fortunately, I blinked in time so it only hid my eyelid, but wow did it hurt. And surprise me.

"Puffer duck!" I said.

I have been cultivating my potty mouth since elementary school, and 4-1/2 years of parenthood have ruined me.

I said "puffer duck!"

Pet Peeve

False Tautologies

For example, I say, "I like X," and someone else hears, "Y sucks."

Or.

I say, "X describes Y," and someone else hears, "Therefore no other entities can contain any X whatsoever."

Note: precondition followed by assumption, without platform of fact upon which to base assumption. So annoying, so defensive.

I loved math in school, but if I had to narrow it down, I think that my favorite math class ever was the hard-to-describe course I took my sophomore year in high school. It was Algebra II, but it was an advanced course and we learned other stuff in there as well, including quite a bit of logic and whatever else the instructor was interested in teaching. I loved Geometry, and Trig, and I must have loved Calculus because I took a few years of it, in high school and in college. But Algebra II was one of the most valuable courses I ever took at any level of my education, because it taught me new analytical ways of thinking.

It's all a playful interest on my part, however. I like to exercise my brain with logic puzzles, but I have no desire to live and work in a completely logical world.

Officially a Big Girl

“At what age were you/your kids potty trained?”

When I talk to people about having a daughter with Down syndrome, ages always factor significantly into the conversation. Although we expected these things to come much, much later- if ever - my daughter talked and walked when she was 1, knew her letters and numbers at 3, and was potty trained . . .

Some of our friends have different approaches to potty training than I do, and that’s fine. Certainly there is room for different opinions here. But until Ellie was able to tell me when she needed to go, walk to the potty herself, pull her pants up and down herself, and go days at a time without accidents, I didn’t consider her potty trained.

In fact, I decided not to put Ellie in big girl underpants until I thought she was ready to be nearly accident-free. She’s been comfortable using the potty since she was 18 months old. That’s 2-1/2 years, folks, that she remained in diapers after learning to use the potty. But consistency has been our big problem: she gets distracted and doesn’t remember to tell us when she needs to potty.

Also, it took a long time for her pull her own pants on and off; unlike many toddlers and preschoolers, she has never been interested in self-dressing or even dressing her dolls, so potty time remained a parent-help-required experience.

Another big hurdle has been parental reluctance. Neither Paul nor I were excited about consistently taking Ellie to the potty every hour for days on end, so we didn’t. There were huge benefits to us in this period. It’s lovely to be told once or twice a day when our daughter needs to go potty (no more poopy diapers!) and we could then change wet ones at our convenience. I got to avoid most public bathrooms and run errands or attend public events without patronizing horrible conveniences like the ubiquitous Johnny-on-the-Spot.

Did I mention that Ellie BM trained herself over a year ago? We've had very few poopy diapers since then, and absolutely no BM accidents at all since we moved to big girl underpants several weeks ago.

Eventually, for all of us, it was time to force progress. I found a book whose system I was comfortable with. It’s research-based, and was designed in the 1970s by psychologists working with institutionalized and severely developmentally disabled adults. (The book is also very much a product of its time, so consider yourselves forewarned.) It was then adapted for use with typical children, with an appendix added on for dealing with children with disabilities (this was the 70's; they use the "r" word). “Success” is measured by a child who recognizes the need to go, takes down own pants, goes, wipes, pulls up pants, empties potty bowl into toilet, and washes hands independently.

Interestingly, this was the same book my mom used to potty train me. She found it enormously frustrating – though it worked – and she pitched it rather than using the same approach with my younger sisters.

I was 2, by the way. Ellie was 3.

It took more than a day, and I still help out as needed, but she meets my criteria for being officially potty trained.

We’re so proud of you, Ellie.

Potty Training in Less than a Day by Azrin and Foxx

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.

The Count

16 weeks pregnant:

• Spontaneous belly touches: 2
• Comments about how freakishly large I am already: 3
• Follow-up queries as to whether or not I'm "sure," or if I might be carrying twins: 2

When it's people I like who touch me, I generally don't mind. But the "My, how big you're getting!" comments are going to wear thin very soon.

One great thing about pregnancy: ability to pretend that all that tummy fat is baby and comfortably wear stretchy, high-waisted pants for several months.

One of many, many not-so-great things about pregnancy: people feeling quite comfortable talking about how "huge" you are and asking quite personal questions about weight gain, etc. I am much less tolerant of all this when it's a stranger who's asking.

Foot in Mouth

I am fantastic at fitting my entire foot in my mouth.

If I start dishing about a co-worker while out to lunch, her best friend is likely to be sitting right behind me. If I'm talking to a friend who is dealing with infertility, I can't seem to stop myself from talking about babies babies babies.

I used to work with a woman my good friend didn't like (long story). We had company bulletin boards where you could post stuff you wanted to sell to other coworkers. Once I "replied" to woman-I-didn't-like instead of "forwarding" her post along to my friend. With catty commentary, of course. Oops.

Here's one that still bugs me from about 10 years ago. Especially since this couple is in our extended group of friends and we see them not infrequently. In fact, I just went to their baby shower a couple of weeks ago.

My parents never talked about money and my mom doesn't wear much jewelry. I was out of school, working at my first "real" [read: career-track] job, and lots of my coworkers talked about rings and diamonds and stuff like that. I myself was in a long-term committed relationship (Hi, Paul!) and decided that I was interested in learning more.

I went to the library and checked out a large, full color, beautiful reference book on diamonds. I rechecked it a few times and read the whole thing cover-to-cover. (I'm sure that the book's presence on the coffee table didn't bother poor Paul at all.)

One night, I was out drinking at a favorite bar with friends, including buddy S, when his brand-new fiance came in.

"Congrats!" I said with excitement. Then it all went downhill. "Can I see your ring? How big is that diamond?"

I still cringe with embarassment whenever I think about it. At the time, I really wasn't thinking. I didn't have any friends who were engaged or married at the time, and my interest was purely academic. I wanted a benchmark. "Oh, so that's what size X looks like." But, man, was that ever inappropriate. And I sure think about it whenever we see them.

A few weeks ago, Ellie and I went out to brunch with a friend. We ran into a family from church at the restaurant and ended up all eating together. This is a really really nice family. The husband had just gotten a new job, and he ended up paying for all of us, which makes my episode of verbal diahrea even worse.

He was talking about his new job, and how his coworkers were all Christians, Presbyterian, in fact!

And even as I watched myself with horror from behind my imagination's sheltering hands, I found myself pontificating on the differences between those Presbyterians and us.

(In this case, it's not too late to fix it. I've written a carefully crafted apology disguised as a thank you note for the brunch. I just need to get their new address and mail it.)

Maybe someday I'll grow up and out of this. But maybe not. I've got a friend and former co-worker - and you know who you are! - who once replied to an email from Human Resources announcing FREE KRISPIE KREMES in all the breakrooms with a two-word email: "YOU B*TCH!" Sans asterisk. Reply to All. Yes, whole office.

I think the best solution, since "think before you speak" is never going to work for me, is to cultivate a reputation as "a real character" so that things like this are expected of me. Or I could just get really really rich. The extraordinarily wealthy are allowed to be "quirky."

Language is Powerful

This is essay was written by Carol Mills, an assistant professor of Communication Studies at the University of Alabama at Birmingham. One of her three children has Down syndrome.

***

This summer, ESPN promoted the NBA playoff with upbeat and funky promos featuring the song “Let’s Get It Started” sung by the hip hop group, The Black Eyed Peas. The song was actually an adaptation of their earlier release, “Let’s Get Retarded.” When I discovered this, I contacted ESPN and encouraged others to do so, too.

Do you think ESPN would have used the BEPs' song if it was originally “Let’s Act Like _____" (insert racial, religious, cultural, or sexist) epithet of your choice? Absolutely not. Though hip hop may play by different cultural and language rules, the Disney subsidiary ESPN does not. Adapting a blatantly offensive song clearly violates appropriate cultural and business standards. During the same time period, teen actor Lindsay Lohan repeatedly replied “that’s retarded,” when questioned about various rumors. And, Jon Stewart, of The Daily Show, regularly used the phrase “like a bunch of retards.” There was little attention or reprimand for any of them.

However, during the NBA finals weeks, there was intense media scrutiny and criticism for football coach Bill Parcels using the phrase “Jap play” during a press conference and basketball legend Larry Bird’s comments about race affecting the NBA. And, comedian Jimmy Kimmel’s show was taken off the air one night because he made an insensitive comment about people from Detroit.

These events reflect a larger social issue: Though dearly sensitive to slurs against other groups, the general population does not see the derogatory use of “retarded” as offensive. Using the word as a pejorative term is common in entertainment venues, daily conversation and children’s play. Though a child would be reprimanded for making a racist comment in most schools, it is not uncommon for students — even teachers — to use the word as an epithet for something they consider negative or inappropriate.

The implications for taking control of language are profound. If children grow up hearing that when they forget something they are “retarded” or that those who act poorly are “a bunch of retards,” how do you think they will react when meeting someone with a diagnosis of mental retardation? Do you think neighborhood parents will fight inclusion if they hear about “retarded children” more than if they hear about “children with developmental delays?”

Our society’s long-time use of “retarded” as an epithet is decidedly negative. We can work to end this. Speak up and educate people.

The best approach often is a direct one. You might say, “You know, ‘retarded’ actually means ‘to do slowly.’ The way you’ve just used it hurts me and many others. It’s like hearing a racial slur.” I’ve often done this, especially with college students, and they are surprised. Most have no idea they are being offensive. They think it’s just another word until told otherwise.

If being direct is too scary, try a gentle question such as, “What did you mean by saying it is ‘retarded’?” This can create an opportunity to share the term’s negative use. Or, if it’s comfortable, try humor. When someone says, “I’m so retarded...” you might say with a smile and a wink, “Oh, that’s okay, so is my son and I love him anyway.” After breaking the ice, explain why it’s important.

This is not about confrontation — it is about education. After awhile, you’ll find a comfortable approach. Yes, initially, it may feel awkward, especially when talking to a doctor, teacher or media representative. But remember, those people need to hear it most. The more you speak up, the more natural it becomes.

Similarly, you educate others about using “people first” language. If someone refers to your child as a “Down’s child,” simply say,“Actually, he is a child who has Down syndrome.” If the person says, “It’s the same thing,” or gives you “The Look,” you might ask if they’d like to be called by their last name first from now on. The words are the same, only the order is different, why should they care? Or, as many people do, ask if they’d want to be called the “ulcer woman,” or the “cancer dad.” Diagnoses should never define the person.

Finding our voice to educate others and correct language might be difficult, but it is imperative. This is not simply about semantics, political correctness or being overly sensitive. It is about respect. Once you start educating others, you will be surprised by reactions. A few may never get it, but most people will thank you. They will even tell you that they never realized the impact of their words. In that moment, you might say, “That’s why I said something. I knew you’d understand.” Then, breathe a sigh of relief and think of what and how you might respond the next time there’s a need to educate someone. And, we all know, there will be a next time.

Language is Powerful
— By Carol Mills, Ph.D., Tuscaloosa, AL