February 24, 2010

NanTalk Triple Play

Hannah, procrastinating again (don't know where she picked up that skill....). Playing with a cowboy hat. She lies down on the floor, puts the hat over her face, crosses her legs and sighs.

H: I'm going to be a cowgirl when I grow up. I have to practice keeping this hat on my face.

Me: I guess that's to keep the sun out of your eyes when you're resting from a long day on the range.

H: No. It's so I can look like a cowgirl.


It was warm enough to grill over the weekend. Yay! We cooked some Omaha Steaks we got for a Christmas gift--yum! We also had roasted potatoes (cut into big cubes), salad with cubes of cheese. The steaks were square, and I added sauteed mushrooms for Hannah and James (blech to me).

Looking down at my plate I said, "It looks like the theme for tonight's dinner is Squares."
Hannah said, "Except for the umbrella- shaped mushrooms."


Nan, a big fan of The Lion King, looking through a newly arrived American Girl catalogue:

"Mom, look at Rebecca Rubin's hakuna outfit!"

(Rebecca is Jewish and had a Hannukah outfit.)

Valentine's Dinner, courtesy of Hannah

I love that girl.

February 23, 2010

Save me.

Teenager-hood is right around the corner.

Attitude is arriving.

Evidence: Hannah procrastinating taking her shower tonight. She made up some story about the bathroom being too scary and TikTok (from the Wizard of Oz books) was going to get her.

Me: You'd better stop pretending and get moving.

H: There IS something scary in the bathroom.

Me, sternly: There isn't anything scary in the whole house.

H: Yes there is. It's YOU when you're mad.

Follow up to the Follow up

My online acquaintance, Sue, blogs about her life with her 3 children, two of whom have special needs. Her latest post includes a story of an amazing 14 year old writer/singer who captures the idea that even one person can make a difference. One person like Hannah, or you, or me.

Go visit Sue's site to hear the whole story.

February 21, 2010

Follow up to the R-word

Wow. I never imagined that little Five Guys story would have touched so many people! When I was writing it I really had second guesses about it--I didn't think it was all that interesting. I mean, it was cool when it happened, but it didn't seem like anything out of the ordinary. Except the free fries. The whole episode passed rather naturally and comfortably. I guess I ought to get ready for a more confrontational situation some time.

Our family is pretty insulated against mainstream popular culture. We're not complete granolas here, but we definitely march to a different drummer. Since we homeschool it's easier to avoid negative closed-minded people. Even though we are by no means isolated--we're out and about in the community and interacting with all kinds of people--we're just not boxed in. I don't have to worry much about who has access to my kid, or who will say what to her or about her.

We do work on toughing Hannah up some. She has a pretty thin skin when it comes to teasing. We're working on getting her to recognize the difference between "fun" teasing and "mean" teasing. When to ignore things and when to laugh along to have fun, and when to ask for help. It's hard because we can't possibly come up with all the scenarios she might encounter.

Back when Hannah was an alien my wise sister gave me some good suggestions: "We did a lot of role playing with Stephen last year before he started Kindergarten. He's short, so I'd call out, "Hey Shrimp!". It took a while for him to learn to respond, "Heya, lobster!" Boy was that time well spent! Wish I'd done it with my over-sensitive girl. We have a good book called Sticks and Stones that goes through various anti-bullying techniques to teach kids. One of our favorites is "you might be right". No matter what someone calls you, you reply, "Yep, you might be right!" I've seen this in action, and it makes the name calling game boring pretty fast."

I feel that negative teasing and name-calling does far more damage than the casual usage of the r-word. Clearly Hannah didn't pick up on the Five Guys guy's muttered phrase. There was no immediate harm done to her when he spoke those words. Of course, she doesn't yet have an understanding of what "retarded" means. She does know that she has Down syndrome, and that the extra chromosome gives her body extra directions that make her uniquely Hannah. For the most part, she sees herself as equal to everyone else. She clearly has a strong self-image and has innocent, ambitious plans for her future--to be a dentist, a ski-jumper, a veterinarian, a ballerina, a dog-trainer. She doesn't feel that she has any limitations. And I don't want people putting limitations on her--neither with low expectations nor with their hurtful words.

I fully expect Hannah will eventually recognize her own limitations, the same as the rest of us who once imagined winning Olympic Gold or becoming the President . I know we'll have to help her through as she realizes what Down syndrome means to her--most likely she will not have babies of her own, she may not be as independent as she wishes, she will have loneliness and disappointments. Just the same as the rest of us.

The difference between our own life struggles and hers is that we don't have as many other people telling us who we are and who we aren't. We don't have people disbelieving our abilities--people who are consistently surprised that we are able to do typical things like read, shop, dance--people who are putting us down, putting us as second-class citizens. I am glad that Hannah doesn't have to be exposed to this yet.

I don't like the r-word. Yes, it's part of the puzzle. But I don't think it's the worst thing. If we eliminate it, there will be a new word to take it's place, I guarantee it. The same as moron, dumb, imbecile and idiot. Not too long ago saying "idiotic" felt the same to some families as "retarded" feels to us. But the words are not the worst thing. The worst thing is not being able to change people's minds about what difference and disability means. I think that only happens one person at a time, usually by someone like Hannah, or Jessie, or Vignesh, or Jude.

February 18, 2010

Yes, another Blogger with an R-word story. How timely!

I haven't had any "R" word experiences. You'd think that with a nearly-12 year old child with Down syndrome that I'd have come across it more often.

Well, I guess that isn't true. I have had occasional friends or acquaintances slip and use the word, but with a quick apology they have shaped up without much intervention.

But Tuesday night Hannah and I went to 5 Guys for our annual allotment of grease and calories. I have been to 5 Guys one other time, when Chris was craving a burger during a long hospital stay for broken vertebrae.

The first thing I noticed was that there was a hand-written sign on the door.

"We cannot except credit cards at this time since our machine is out of order."

This irritated me of course, not because I didn't have cash, but because of the incorrect usage of "except". I'm such a snob.

We entered the restaurant, and were greeted at the counter by a polite young man, probably about 20 years old. A similar sign excepting credit cards was on the counter. After a friendly greeting, I teasingly said (though perhaps shouldn't have), "This bothers me--the word is "accept", not "except". I am a teacher, and this should be corrected." The young man didn't really understand the difference between the two, but trying to appease the customer, offered up, "Oh, that was _____'s sign. She's retarded."

I knew he was using the term as popular culture does. In a friendly way I said, "Excuse me? Did you say retarded? That is not a word to be used. You need to pay attention." He was confused until I nodded my head towards my daughter (who was oblivious to the entire thing as she was studying the menu). He immediately apologized, looked me straight in the eye and said, "You're exactly right. I won't use that word again." I said, "Thank you. The word 'retarded' is just as bad as other words, you know, like the n-word." (I figured I'd play this card since he'd be sensitive to someone using that word.)

He apologized again and vowed to never use the word.

And then he gave us free fries.

After enjoying our dinner, we were ready to leave. He called out, "I meant it! Really! Have a good night!"

February 14, 2010


Hannah is in bed reading a book about a family that is expecting a baby. The book has real photographs of the baby as it develops in utero, and discreet pictures of the birth. There is a picture of the new baby wailing right after birth.

Hannah calls to me, "Mom! Come and see this! It's just like when I was born! Isn't that baby cute, just like me? Remember when I was born and I howled like a wolf looking at the moon?"

February 13, 2010

A Little Bit of Homeschooling

That's all we're getting done these days. We've been busy with lots of learning, but not necessarily quantifiable learning. But just to provide some evidence of actual academic and critical thinking, I took a few pictures. (Still have not found the little video camera. I think Chris will have to cough up the digital camera he took to college and never uses. Spring Break isn't that far away!)

Here's a page of Hannah's Building Thinking Skills book. She loves it. And it makes her think.

Several times a week we've been setting up shop. Sometimes it's groceries, sometimes it's clothes, but this time it was our own Littlest Pet Shop. We collected some of Hannah's Pet Shop toys, and added in a few real pet things to our "store" . I mean, who could resist a chewed nylon bone with lint on it? Especially when it's only $0.66. Or, maybe you'd rather have a lizard for $0.50? A fish with half a tail? To get that beauty you've got to have 100 pennies. Or 10 dimes. Or a paper dollar. Or a John Tyler dollar coin.

Hannah is pondering her purchases.

We are only using pennies, dimes and dollars right now. I've been trying to get her comfortable with the two symbols we use for money. The "$" and the "¢ " . In addition to making American coins as confusing as possible, Americans also like to write things out like this:

$0.78, which we read as "78 cents". Does it say 78¢ ? No. What it actually says is "zero dollars and 78/100ths of a dollar". One more tick on the confusion side.

But Nan is learning that she can read it as "78 cents".

I made a whole bunch of price tags, some with $ and some with C. Some are easy amounts of money, and some are difficult.

She's learning how to pay exact change. And what happens if she doesn't have exact change. We're not even going to start thinking about nickels or quarters. Or sales tax (heaven help us). We're going in baby steps. And we're having fun!

We also have been making Valentines, baking, going to a new swimming teacher, piano lessons, drama, Pottery class (new this week!), yoga, library, going to Special Olympics swimming for the first time, playing in the snow (it will never melt...we got another inch yesterday), watching the Olympics and battling the new medical insurance for coverage for Hannah's CPAP.

May your Valentine's day be filled with love!

p.s. Argh at Blogger's formatting!

February 7, 2010

Precious--the movie

I really wanted to see this movie when it came out, but it disappeared before I got the chance. But, the Oscar nomination breathed new life into it, so it's now showing at theaters all over the place.

I went to see it this afternoon. Alone. I wanted a friend or two to come along, but none were available. I thought about postponing, but it was an open afternoon since I wore Hannah out with a 105 minute snowball fight. The roads are clear here in Richmond--we didn't get the big dump of snow they did a little further north. We had snow, then rain, then snow again, leaving us with about 4-5 inches by last night.

Spoiler Alert--I'm not going to tell much about the storyline, but I do reveal one thing that shook me to the core. I know I would have liked to be prepared a little more for this movie.

So I headed out. There were two other women in the theater. I had read a short description of the movie, and knew it would be a difficult film to watch. The basic story is that Precious is 16 years old and pregnant with her second child. She has a cognitive disability. Her own father is the father of her children. There is lots of physical and emotional abuse in the household. The movie is raw and grim enough that it is barely watchable.

I was prepared for the onslaught of coarse language and violence. What I wasn't prepared for was the unexpected revelation that Precious' first child (who isn't present in the household--what happened to her? Where is she?) has Down syndrome. The child actor, Quishay Powell, appeared to be about 4 or 5 years old. (Yes, she does have Down syndrome.. Most individuals with Down syndrome have mild intellectual disabilities. For those of you who are looking to know if Quishay Powell is retarded, I cannot say. The word "retarded" is antiquated. The correct terminology is developmentally delayed. I don't know Quishay Powell so I couldn't tell you if she is delayed. Not all individuals with Down syndrome have obvious intellectual delays, but most do.) The character she played was named, "Mongo". I heard the name before the child was on screen. Yes, it is a nickname for Mongoloid. The idea of a child with Down syndrome in the movie completely horrified me.

I have heard Hannah referred to as "mongoloid" twice. Neither time was in a demeaning way--just an ignorant way. The first time Hannah was 5 years old and we were at a the park. She was in the sand pit with some other children. I was sitting on the park bench. The father of one of the children sat down near me. We chatted lightly, it's hot out, which child is yours, etc. We watched the children play. Then the man said, "Have you got a little bit of mongoloid there?" He really didn't know he was offensive, so I didn't get offended. I gently explained a little bit about Down syndrome and that the term "mongoloid" was outdated. The second time was from a senior citizen. I knew that she was using the terminology that she was taught when she was younger. She thought she was being polite. My answer to her question was, "Yes, she has Down syndrome."

The interchange with this woman reminded me of my own grandmother. I remember her once using the phrase "a Negro woman". I was about 14 years old and I was horrified. I don't think I had ever heard the word spoken before, certainly not by someone in my own family. My father was involved in the civil rights movement, and we had lived in a very diverse urban city. I couldn't fathom how my grandmother could use such language. In later years, I realized that Grandma was using the words that were acceptable when she was a child and younger adult.

Back to the movie: Aside from the violence and abuse in the movie, the film left me feeling unsettled and disappointed about stereotypes and formulaic "solutions"--the assumed capabilities of an individual with Down syndrome, racial prejudice, the make up of the classroom students. I am tired of seeing token diversity in summer camp or college brochures--one African-American, one Asian, one Latino, one disabled, one Caucasian. This movie left me with slightly the same feel. I was uncomfortable that the "saviors"--the teacher, the social worker, etc were light-skinned or white. I am tired of the perpetuation of any kind of stereotype. We all might not have the same opportunities, but each one of us has unique capabilities, no matter what color skin, gender or IQ.

I do feel that Precious is an important movie. Just be aware of misery overkill. It almost made me physically sick.

February 5, 2010

Those are Tasty

*Forgive the screwy color, fonts and formatting. Sometimes Blogger is such a pain. **

Hannah loves to read cookbooks. Especially children's cookbooks (thank you, public library!).

She will read through an entire 200 page cookbook, remarking "Those are tasty" for each recipe, even when it isn't appropriate.

Like this:

H: Ooh, look at this! How to make Butter! Those are tasty!


H: Cinnamon Applesauce! Yum, those are tasty!

The phrase is soooo overused that we have moved past being irritated. We are forever resigned to having those tasty things. We all frequently use the phrase improperly. Dress shopping? Those are Tasty. Time to fuel up the car? Those are Tasty. A cute dog in a passing pick-up truck? Those are Tasty.

So here's today's Those Are Tasty. Perfect for a snowy day.

Usually we make letter pretzels, but it's getting close to Valentine's Day. Nan did half of these, and I did the rest (this is pan #1... pan #2 wasn't quite so crowded!).

Here's the recipe, found ages ago from some website.
Those are Tasty Pretzels

A. Dough

1.5 cups warm water
1 1/4 tsp active dry yeast
2 Tbl brown sugar
1 1/4 tsp salt
4 cups white flour (if you have bread flour, use 1 cup, and 3 all purpose)

1. Dissolve yeast in warm water

2. Stir in sugar and salt. Add in flour and knead dough until smooth and elastic. (Don't put in all the flour--save out 1/2 cup or so, and add in as necessary to keep it from being too sticky.)

3. Let rise 30 minutes (or more)

B. Create a
soda water bath for the dough

2 cups warm water
2 Tbl baking soda

When dough has risen, cut in half (wrap one half to keep moist). Pinch or cut off a chunk of dough and roll into a long rope (1/2 inch or less) and shape.

Dip pretzels into soda solution and place on greased baking sheet.

Allow to rise again (not too long--usually they are ready by the time I've filled the cookie sheet).

Bake at 450 for 8-10 minutes or until golden.

Brush with melted butter and sprinkle with coarse salt.
(Alternately, you could dip the pretzel into melted butter on both sides and then dip into cinnamon sugar. We never do this.)

NOTE: These are best warm out of the oven. If they cool off, just zap them for 10 seconds or so. They need to be eaten quickly or they taste dead. The salt will melt away within 24 hours. So share with neighbors and friends right away. (We gave half of these to our next door neighbors that we don't like. Dang we're nice.)

By the numbers

By way of catching up:

11 days since last post-sorry!

2 curious people trying to find the blog lurker from Lancaster, CA area--please comment or email! (Pretty please?). The mystery is almost as compelling as the Wasilla, AK reader (Hi Gri!).

3 nasty head colds for 3 people

1 visit to the Special Olympics swim program. Hannah's going to give it a try.

592 blogs unvisited

1 major snowstorm, another due today

Yum yum! Snow snack!

98 mindless games of Zuma and still can't get through level 12.5, no matter how many lives I have

1 Valentine fundraiser for a Reece's Rainbow child over at Charissa's blog (see--I did visit 1 blog in a month!)

3 Christmas packages from Jordan!!!

1 handmade hat by a Jordanian woman with Down syndrome
2 keffiyehs without instructions (the instructions came later)

1 baby Lois home from her first chemo--but she's battling a respiratory illness at home.

106 days since Kate left

6 Facebook profile picture changes, including this one:

3 new friends, emigrated from Cameroon, coming to visit today if the snow holds off--I'm excited to meet this homeschooling family whose 14 year old has Down syndrome!

1 digital camera still missing.

0 motivation to clean and find it