November 24, 2009

The cutest toes

My friend Tracy found my blog months ago. We've corresponded and talked on the phone. She was pregnant with a baby boy with a prenatal diagnosis of Down syndrome. We've talked about those early mixed up feelings, about worries, joys and regular old baby stuff (plumbing, nursing, sleeping, choosing a name).

For some reason, she and her husband didn't take up my suggestion for a name for the little guy. I was trying to come up with a name that would give him character, one that would indicate how tough he really is going to be--a fighter. My name for him is Snake.

Go figure, they chose to name him William Leonidas--William for William Wallace (definitely a fighter), and Leonidas for a King of Sparta (a descendant of Heracles according to Greek mythology, who possessed much of Heracles' strength and bravery). How about that! What an amazing gift of a name!!

Here he is.

Wonderfully made!

Perfect, from toe to head.

Welcome sweet Snake! You did a good job picking out your mom and dad, sister and brother! We look forward to watching you and your family grow in love and joy!

November 20, 2009

Cookin' with Nan

Here's our first installment of "Cooking with Nan"!

A couple of notes:

1. You will hear me give verbal directions throughout the cooking lesson. I always try to give verbal directions first, for any task. This works on Hannah's auditory processing, which is slower than her visual processing. If I physically show her how to do something, it's much easier for her. I want her to attend to what I'm saying, interpret it, and execute it.

2. No children or dogs were harmed during the making of this video.

Key Lime Pie Recipe:

1 baked Cookie Crumb Crust:
1 1/4 cups graham cracker crumbs
3 T. sugar
6 T. melted unsalted butter
Toss ingredients together, pat into pie plate.
Bake at 375F for 8 minutes.

1 can (14 oz) sweetened condensed milk
1/2 cup + 2 T. fresh lime juice (regular
2 large eggs
2 T. grated lime zest
Dash of salt

8 oz sour cream
1/4 cup sugar
1/8 tsp salt

Preheat oven to 350F. Whisk filling ingredients together, pour into baked crust. Bake until it begins to set ~10 minutes.

Remove pie. Increase oven to 325F.

Whisk topping ingredients together and spread topping over the pie.

Bake pie for 5 minutes more. Topping will be loose, but will set as it cools. Cool on rack, then chill for 6 hours before serving.

*I live in a house full of Key Lime Pie lovers, and I'm a Banana Cream Pie lover...oh well.

November 17, 2009

On Her Own...

Yesterday Hannah had her 6 month check-up at our family dentist. She did fine, as usual (we spent several years brainwashing her when she was little, so she really likes the dentist now). The dentist did find a cavity though. Hannah has deep fissures in her back teeth, and they are perfect places for cavities to grow. All of her molars have sealants, but her bicuspids don't. This cavity was in her right top bicuspid.

On our way home we talked about what a cavity is, how it grows and how to remove it. I told her about the shot, and the noises she'd hear from the tools the doctor would use, and how they'd feel in her mouth.

So this morning we went back for the filling (and getting sealants on her 12-year molars). We were in the waiting room for a bit, then the assistant came to get Hannah. I have always gone with her in the past, but lately I've given her the option of going alone. Today she decided to go by herself!

I sat in the waiting room eavesdropping (it's a small office). I heard her chatting about Narnia, so I knew she was comfortable (I've been reading The Magician's Nephew to her). Then all was quiet. So I went to take a peek. She was just getting her shot. I couldn't see her head, but her hands were relaxed and calm (I always have white knuckles when I get dental shots or drilling). She remained calm through the entire procedure! The staff could barely believe it (me too!). She came out happy, without any stress at all.

My favorite part was when we were driving home. She was being silly--her mouth felt funny from the numbing medicine. She said, "Hey! DumDum! Give me some Numb Numb!!!" (If you've never seen the movie Night at the Museum, this won't make sense.)


Soon after we got home, Kate called from Jordan! Yay! She was traveling near Petra over the weekend, so she couldn't call until today. She sounded great! She is tiring of pita and hummus. And she will be switching host families. Her new family does not have hot water...hmmm. We'll see how that works out! But she only has a month left of training.

Tomorrow her group will be meeting the US Ambassador. She is excited about that. I told her that if the Ambassador isn't prompt enough she should say, "If this is a consular building, then WHERE is the Ambassador???" (a la Star Wars).

She feels like she's been away for six months, but it's been just less than a month!

She has had the opportunity to meet with other Peace Corps Volunteers who have been in Jordan for a year or more. This weekend she went to visit a volunteer who helps young adult women with disabilities with job training. They are sewing and knitting. Kate commissioned a knitted hat for Hannah, made by a woman with Down syndrome!

Last week she got to go to a field day to meet some students in another area of Jordan--she was happy to be with her peeps!

I'm sure once she gets through her training she is going to have so much fun with her students!

November 12, 2009

Erm. Umm. Yes.

Wouldn't you think that with only one child at home I ought to be able to at least be able to write a blog post every few days? Maybe? I think so. But, I am wrong. And I can't blame the remnants of Ida, though she has made everything cold, blustery and wet (6+ inches of rain so far).

The real reason is that I have been procrastinating. I am headed to Northern Virginia tomorrow. Saturday I am giving a 2 hour presentation on Literacy in the Down Syndrome Population. Of course, I've known about this presentation for many many months. But I waited until this week to polish up my rough draft. And then I had to completely revamp my hand-outs.

But I got it done, finally! After many stops and starts (the stops were mainly Facebooking and playing Zuma, and of course, Hannah-ing). I leave tomorrow for the whole weekend! I'm hoping to catch up with a few bloggers and homeschoolers up that direction, and then spend time with college friends who live in the area. Whoohoo! I am looking forward to all of it!

James and Hannah have big plans too. Tomorrow afternoon they are going to Lunar Golf. I didn't know such a place existed, but Hannah saw it while shopping with Kate one time. It's a black-light miniature golf course in the mall. She also has convinced James to take her to the food court and get some pizza. I think she's going to try to convince him that she needs another Webkin (NOT!!!). Saturday evening they are going to the Lipizzaner Stallion Show. And of course, Sunday is Football. They like to watch together. Well. Not really. James like to watch a game or two (Cowboys), and Hannah likes to draw nearby and eat snacks.

Speaking of drawing, Hannah picked up this book at the library:

(Ooh! You just witnessed me cleverly segueing into the deleted portions of my last post!)

I think she did a really good job following the directions in the book.

Here are a couple more. These are actually pretty small drawings--about 3 inches tall.

Hannah's theater class finished up today. They primarily work on acting skills, but at the end of the 8 week session they put on a short skit. Hannah had the role of the Queen in a very short and humorous production of Sleeping Beauty. Here she is practicing her lines with me. Two things of note in this video:
1. She makes a classic Down syndrome move with her hands and giggle when she got excited about nailing her first line "yeahhhhhh!". It's something, to me, that is really a bit endearing, yet goofy.
2. At the end, she tries to get me to come next to her so we could say her last lines together, since the entire cast says the last lines simultaneously.

She did a really great job at the performance this afternoon. Her friend Clare was the Princess, and they were quite silly together. Here's one for the Royal Family Album.

I am really thankful for Hannah's friends. They are so accepting and they genuinely enjoy being with her. I know that's normally how friends are, but I remain amazed at how kind and generous they are.

Breaking News!!! 10:50p.m.
I just got a phone call from one of the first moms who responded to my Worst Down Syndrome post. We've been corresponding for months as she's journeyed through her prenatal diagnosis. She has had a very difficult pregnancy, and tonight she will deliver her sweet baby boy via C-section. He will be nearly a month early, and hopefully his Daddy will make it to the hospital in time!

Right now she is alone at the hospital in Southern California. Please pray for her, the baby, and the doctors. I will update when I hear something.

UPDATE: William Leonidas was born November 12 at 10:07 p.m. Pacific Time. He weighs 5lbs 15 oz. and 18" long! He's doing well, but is needing a little O2 to keep his oxygen saturation up. Mom is doing well--she sounds good!

November 7, 2009

Odds and Evens Ends.

Even though all this stuff is WAY past due, here are some odds and ends that I think will fall through the cracks if I don't get it posted soon. So be prepared for a non sequitur post!

1. Hannah (and I) have been thoroughly enjoying her new Girl Scout Troop. There are about 6 or 7 girls in the Juniors, a couple of Cadettes and 4 Brownies. I primarily work with the Brownies (no, I am not a leader, I just pretend I am one, yet, I have no responsibility, which keeps me very happy!). By keeping myself busy with the younger girls, I am out of Hannah's way, but still available to lend a hand if necessary. Hannah is doing well, starting to make friends. All the Juniors have jobs in running the troop, and Hannah is the Troop Photographer. It's a job she loves and takes very seriously. So far the girls have earned 2 badges and 1 activity patch. Which is three times as much as she earned in 6 months at the old troop.

Last week there was a Halloween party, that was actually hosted by her previous troop (uh-oh!). It was half-(insert past-tense expletive here=derriere), as I was expecting. Most of the girls who attended from our troop were disappointed, but Hannah thought it was great! Of course, she had never been to a Halloween party before. They had a cupcake walk, played musical chairs, had a "fortune teller" and a couple of other games. Here's Hannah on the cupcake walk gallop.
She was concentrating pretty hard!

2. Kate called last week, and emailed briefly today. She is staying with a family in a town. The family has 5 children, ages 18 months-13 years. The oldest three are girls, then the little ones are boys. The family is pretty well off as things go in Jordan. Kate is enjoying the homemade food much more than the "dorm" food she had earlier. She says that her host mother literally shoves food into Kate's mouth. I guess they think she is too thin....but how can they tell if she's wearing all those loose clothes? Water is a problem. The family receives delivery of water once a week and they have to ration it to last. That means there are showers only on the day of delivery. That's taking some adjustment on Kate's part! To use the internet she has to take a 20 minute bus ride to get to an internet cafe. They don't have wireless, so she has to use the cafe computers. Hence, no pictures until she can use her own computer.

Kate has 6 hours of language and culture lessons every day (maybe Saturday off? I haven't figured out which is the day of rest). Two of the days she travels to a larger town to have classes with the entire Peace Corps class (42 volunteers total, but only 6 in her smaller town). She is surprised how much she is enjoying not having to deal with men! She says it makes things much easier! (May I now put in a plug for single gender colleges? I went to a women's college and not only was it great fun (plenty of male visitors on the weekends), but it was a very nurturing environment. I even met James there!)

3. Chris is doing well at school. I know he's working hard because he usually is in the library when I call him! His friends gave him a surprise party at midnight. Which was good, since his cafeteria birthday pie arrived a day late and his gift from us was nearly a week late! We are ready to have him home for Thanksgiving--it's getting a little quiet around here!

4.Hannah has been doing some cooking and she wants to add a "Cookin' with Nan" feature on the blog. I have plenty of footage, I just haven't had time or energy to sort through it!

5. Hannah had her last soccer session today. I couldn't find her warm-up jacket, so I looked around for a sweatshirt. I found one of Kate's, and hoped it would do. Sure enough, it perfectly fits Hannah. James and I were remarking about it, and then I realized that the girls are definitely shaped differently, but they are only 7 pounds apart.

6. Swimming lessons are going full speed ahead. Hannah is a "sinker", but she's finally getting the hang of the backstroke. That left arm isn't behaving quite as well as the right, but she's moving, and not sinking!

7. The day Kate left for Jordan we had tickets to...

Disney on Ice! Hannah invited "Sheena-my-partner-from-dance". The three of us had a great time. I was surprised that I actually liked the show! Sheena kept saying she felt like she was 7 years old again! It was lots of fun, and great to see the two of them together again. (You might recall Sheena from Hannah's dance performance here.)

And there you have it. More than you wanted or needed. And, if you can believe it, I deleted two other items, to save you from incessant Hannah-ing.

November 6, 2009

Oh the Places You'll Go!

With apologies to Dr. Seuss for stealing his line, I'd like to introduce you to some interesting blogs that don't get enough traffic (even traffic from me--I find I'm missing the free time I had in the summer when I could surf blogger and keep up with everyone's adventures).

Kim at Cameron's Crew has her hands full with a very funny (and extremely verbal) three-year old. Cameron will keep you laughing every time you visit her blog. I first met Cameron when he was just days old. He had a rough start, with significant cardiology issues and weight gain, but his mommy kept on looking forward. Cameron knows more sign language than any other kid I know, but what's even better is that now he's just talking away. He is ridiculous fun!

We don't find many Ds blogs out there about adults. Adventures with Beth is about a 25 year old woman who is finding her way through early adulthood. Right now she's on vacation, but I'm sure that Cindy will be posting again soon.

Alex is the star of The Ordinary Life of an Extraordinary Girl. She is 16 and is a girl who really knows what she wants! Her tenacity is amazing.

And new-to-blogging is Josette, the author of Counting Kisses. The youngest of Josette's three daughters is Jessie, who is 8 years old and has Down syndrome. Josette homeschools all of her girls. I'm always glad to find another family that is homeschooling a child with Ds! There actually are quite a few out there--families from California to Texas to Kansas to Minnesota (and lots more places--even Finland!).

Anyhow, now you've got some homework to do, visiting all these places.

November 4, 2009


The other day Hannah found some magnets from when she was younger. There were dinosaurs and farm animals. She played with them for quite a while, sorting them, having the dinosaurs eat the farm animals, making the duck and chicken get married, etc.

She called out to me: I like THIS dinosaur the best.

Me: Why?

Nan: Because he is the fastest and he eats meat. We could be carnivores together! (*big smile*) (it's true, she does love meat)

Then, as a quiet afterthought: Besides, I'm the fastest too.

November 2, 2009

Think College!

Hannah's been talking about going to college for the past four years, starting when Kate was doing her applications. She hasn't stopped yet, so I think this is a goal of hers.

I have casually been looking out for colleges that have programs for individuals with cognitive disabilities. More and more schools are creating dynamic programs ranging from self-help courses to inclusive academic classes. I know there is a program at George Mason University (about 2 hours away from us), but I don't know much about it. While working at the Buddy Walk I met a young woman whose brother has Ds. He is graduating from the program this coming spring. She said that he just LOVES everything about it.

There is another program starting at Old Dominion University in Norfolk, VA (2 hours the other direction). And I know there are many more options around the country.

A couple months ago I came across this website: Think College. I got so excited! There are programs that range from 6 months -4 years. The programs that really got my attention are at Vanderbilt University (Nashville, TN). One is a residential, 2-year, non-degree program. The other is a program that is based at the Vanderbilt Hospital, and provides 6 months of training in various departments in the hospital, usually resulting in being hired by the hospital. One of my leanings towards Vanderbilt is because there is a fair chance that James' job may move him at some point in the future, and Nashville is a likely candidate (but it could be anywhere, or, we could just stay here for years, who knows?). The other thing is that it's the first program I've seen that specifically focuses on medical careers. Over the years Hannah has determined that she wants to be some kind of doctor/dentist/vet. I know, she's just a kid, but she's been after this for more than half her life.

I had a vague plan on how to get her into a medical job, mostly using Chris (who plans on medical school after he graduates from William and Mary). I figured he could find a job for her somewhere--in his own office or lab. But then, he may end up in Australia (literally), and I don't know if I'm up for THAT much independence (for either of them!). So this Vanderbilt program is really exciting to me!

I remember back when Nan was first born. A friend asked me how I felt about knowing that Hannah would always live with me. I didn't hesitate for a second. "She's not living with me forever--she's moving out! It might take her a little longer, but she's leaving to live her own life." I always figured that she'd probably be ready to move out when she was in her mid-20s. I don't know if that will pan out or not, but I think it's a realistic goal. When I compare how much she's learned up until now I think she has a good shot at being quite self-determined. I have no doubts that she will need supports--at this point I don't see her trajectory including independence regarding finances. And I'm not so sure about driving a car. I'm not saying that she won't or can't do these things, but I don't see them happening without lots and lots of motivation on her part. At least not in her early adulthood.

Anyway, I wanted to share the college website and let your imaginations run with all the options out there. More and more opportunities....I want her to be able to dream, and I want to know that I can help make her dreams come true.

(Wow, I think I need a "syrup sweetness" font for that last sentence! I wonder if there's a way to make it sound less sappy, but yet still say the same thing.)....thinking.... (The answer is yes, there is a way, but I'm leaving it the way it is because this is my blog and I'd rather think about what a "sappy font" might look like than edit.)