Gearing up for the big Eleven!

Tomorrow is Hannah's birthday, and she is getting very excited. I think that she's learned more about the calendar this week than in her entire life!

Packages from grandparents have been arriving, party favors purchased, cake decisions made, restaurant chosen, and grins abound! I still have to wrap presents and get a few ingredients for the cake. And come up with some back-up activities/games for the party on Saturday. She is expecting nine friends to come.

This year Hannah wanted a sports party. I've mentioned before that she is my only child who is interested in organized sports. She doesn't like to watch sports on TV, she likes to play them. She currently takes a dance movement class and swimming lessons. But soon both baseball and soccer season begins and she's been chomping at the bit. So, for the party, we've rented an indoor sports facility (good thing, cold rain expected here); kickball, soccer, relay games, Moonbounce, etc. will be on the agenda for the Saturday. I'm one of those moms who always has parties at home. I think we had one other party out of the house, because we had new carpet laid and the house was for sale. It's strange not having to plan. It sort of doesn't feel like a party. Or at least, it doesn't feel like one of our parties (less work for Mom!!). But Hannah will enjoy this very much.

The weird part about sports and Hannah is that she is not particularly well coordinated. Yet she is better at baseball than I am (which isn't saying much...when she is clumsy I often say she comes by it genetically, and I mean from my gene pool, not her bonus gene pool!). She LOVES to play in the yard with James (he's the designated sports parent, primarily because he does know how to throw, catch and kick, unlike the rest of us).

I can easily say that gross motor skills are not her strength. She comes from a long lineage of uncoordinated people (on the maternal side). She still marks time going down stairs (taking one step at a time rather than alternating feet). She cannot carry much up stairs because she needs one hand to hold on to the railing for stability. She has orthotic inserts in her shoes (no more AFOs!) which help her keep her pronated feet aligned. Her right side has always been weaker than her left (when she was a young baby she rarely used her right arm and her head was always flopped to the right, since the muscles on the right side of her neck were weaker). We worked hard with physical therapy to balance her out, and if you don't look too closely, you'd never really notice anything, other than she's physically slower than most kids.

When she was about three years old we stopped Physical Therapy (PT). We wanted to focus more on her speech and cognition. When she was five years old she had a set of evaluations (gross motor, fine motor, cognitive testing, etc). So she had not had PT for a couple of years. Now, any parent of a child with a developmental disability will tell you that even though tests don't truly measure important things (like how funny or compassionate or hardworking or full of love an individual is), sometimes the scores really feel like a kick in the stomach. We know that "it's just a snapshot" and "it's a new testing environment"; we know all the excuses. But it still is a difficult time when the statistics say that your bright, delightful, charming five year-old child has the physical skills of a 20 month old. Or fine motor skills similar to a 2 year old. Or two years behind on speech, or whatever the scores of the day reveal. They can knock you down.

But, this time, when the results came back that low, I really didn't care. I saw what skills they tested, and I saw how miserably she failed. No, she could not jump with both feet 3 inches off the ground. No, she did not know how to throw a ball underhand 6 feet and hit a target. No, she could not walk on a floor level balance beam or strip of tape. But I discovered that I didn't give a hoot (actually, I think my words were more along the lines of not giving a "rat's @#$"). None of it was relevant to who Hannah was, or who she would or could become. I knew that her lack of aptitude for jumping would not determine what kind of job she would get as an adult. I knew that she would not need to throw a ball a certain distance to take public transportation to get to church or a friend's house. I knew that she would not be required to walk on a strip of tape when she shopped for her own groceries. Really, none of it mattered at all.

What we're after for Hannah is meaningful relationships (with God, family, neighbors, friends, sweethearts, spouse, who knows? Why not?), as much independence as possible, fulfillment in her chosen career, and a feeling of belonging to a community. That's what we want for each of our children.

Hannah has no idea of her challenges. As far as I can tell, she has a pretty good self-image. She thinks she's a terrific swimmer, a good baseball player, a capable soccer student. She is motivated. She's got a better attitude than I do most days. Well. Maybe not, depending on the tasks of the day. But she's willing to do the work. And there is no test that measures enthusaism.
So we leave the First Decade of Hannah, and enter into more adventures, more friends, more opportunities to jump higher than we did before, in a Moonbounce. I'm sure she can get 3 inches off the moon.

Hannah Duston

We spent Friday enjoying the warmer weather (snow disappeared quickly!), preparing for a dinner party (Sat night) and tidying up. Hannah's chores included dusting. She really likes to dust, which is good, since we always have lots of it!

While dusting the piano she said, "I'm really good at dusting. That's because I'm Hannah Duston!!" Ha! Yes, her middle name is Duston. It's a family name. Actually, she's named after a famous Hannah Duston (sometimes spelled Dustin). Hannah Duston was the first woman in North America to have a statue erected in her honor.


I have not yet told Nan the origin of her name. It is a rather colorful story. And brutal. And quite politically incorrect.

When we were awaiting Hannah's birth, there was great drama between Kate and Chris. Kate was hoping for a sister, and Chris was hoping for a brother. James and I always liked to be surprised at the birth of our children, but for the first time, for the sake of a peaceful entry into siblinghood, we decided to find out the gender via ultrasound. Upon learning that he was expecting another sister, Chris was as devastated as a seven-year old can be. As a consolation prize, we decided to let him come up with his baby sister's name (reserving parental veto power). His first choice was Guenivere. Which was promptly vetoed. He did some research and found that the Americanized version of Guenivere is Jennifer. Which was also vetoed (nothing personal Jen, Jenny, Jennifer, et al).

Eventually I showed him some of our family tree, and told him an abridged story about Hannah Duston. It's filled with death, bravery, scalping, daring escape and, eventually, reunion. What more could a boy want? The name was chosen.

You can read the Wikipedia version here. Also, I see on Wiki, for those of you following along, that there is reference to Hannah Duston's mother as a Webster (see my earlier post about Noah and Daniel Webster).

So the original Hannah Duston was a woman who, after having her newborn child killed in front of her, was taken captive by natives. She escaped by killing and scalping her captors, and made her way back to her family. She was a woman who met her challenges. Just like my girl. We didn't know our Hannah was going to have as many challenges as she does. But she's got a fighting spirit that has carried her through many medical and developmental obstacles. Well named, well loved.

But watch out for that tomahawk.

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An addendum: I just found a link to the story I grew up with. It's quite a bit more gruesome than the Wikipedia version. You might not want to read this. Really. But there it is. Tempting you.

One thing I never noticed before is that Hannah Duston was captured by the Indians on March 14th. That's mighty close to our Hannah's birthday--March 13th.

Virginia Snow

Make photo slide shows at www.OneTrueMedia.com

21 Things about Mommy, According to Hannah

This has been running around Facebook, and I thought it was cute enough to share with you too!


1. What is something mommy always says to you?

Get things right. (I don’t believe I’ve ever said this in my life.)

2. What makes mommy happy?

If I read a book to her.

3. What makes mommy sad?

Sticking out your tongue to be mean.

4. How does your mommy make you laugh?

A joke.

5. What was your mommy like as a child?

Doing art. (Wrong.)

6. How old is your mommy?

78

7. How tall is your mommy?

59--That means tall. (I'm 5'5")

8. What is her favorite thing to do?

Taking care of beautiful children.

9. What does your mommy do when you're not around?

You have to do stuff yourself.

10. If your mommy becomes famous, what will it be for?

Being a statue.

11. What is your mommy really good at?

Drawing (yeah, right...maybe stick figures)

12. What is your mommy not very good at?

Spelling (Hey, I can spell ophthalmology!)

13. What does your mommy do for a job?

Being the boss in the house.

14.What is your mommy's favorite food?

Spaghetti

15.What makes you proud of your mommy?

(long silence.) Maybe you're a good cook.

16. If your mom were a cartoon character, who would she be?

Sully from Monster’s Inc.

17. What do you and your mommy do together?

Read, eat, cooking, taking care of dogs.

18. How are you and your mommy the same?

Same last name.

19. How are you and your mommy different?

Different color hair and eye color.

20. How do you know your mommy loves you?

Sing a nice song--"I love you so much. I love you so much. I can't even tell you how much I love you. You're special to me, you're special to me, I'm lucky to have you as part of my life."

21. Where is your mommy's favorite place to go?

Inflation Nation or, maybe the circus.

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Hannah used another one of her invented words today. I had forgotten this one.

"Yesternight".

I was getting out some leftovers for lunch. She said, "Oh, chicken pot pie from yesternight."

Happy 105th Birthday Dr Seuss!

What would life be like without Dr. Seuss? The first book I ever read was Hop on Pop. I begged my father to read Bartholomew and the Oobleck over and over. I had fish named One Fish and Two Fish. Do you know about the Zax Bypass? Too Many Daves ? Marvin K. Mooney, The Lorax, The Sneetches...how about The Pants with Nobody Inside Them? ...where would childhood be without these stories?

Here's my Horton-loving Cat in the Hat. We're glad we've got the Good Doctor in our house!

Narnia

Hannah was hoping this lamp post would bring her to a magical land.

The weatherwoman got it right....three+ inches. So far it's been coming down at an inch an hour. Chris' classes are already canceled for tomorrow. Even if we only end up with a few more inches, y'all have to remember, this is Virginia...we don't have snow plows. Well, actually I don't know if they do. I know that North Carolina doesn't, and I've only ever seen one in the four years we've been in VA.

I'm hoping Hannah isn't going to ask for Turkish Delight. Hot cocoa I can do, but I'm currently out of Turkish Delight.

Home Sweet Home

I didn't manage to post about my trip to the AIA Conference in Washington DC, so now I get to do it after the fact! I was sent to the conference by our local support group, The Down Syndrome Association of Greater Richmond. It was great! Some of my favorite researchers and Ds supporters were there--Dr. Bill Mobley and Dr. Brian Skotko, as well as lots of other presenters. The conference was for affiliate Ds groups to connect and communicate with one another--what's working, what isn't and what is coming down the line. The DS Guild of Greater Kansas City created the Affiliates in Action conference three years ago. This year it was sponsored by the National Down syndrome groups (Society and Congress), and my favorite, the DSRTF. The new Linda Crnic Institute for Down Syndrome (in Colorado) also sponsored the conference.

A hotel room with a view!

The big news is that the NDSS has changed its mission and strategy. The old mission was to support education, advocacy and research. Now it's "to be the national advocate for the value, acceptance and inclusion of people with Down syndrome." They are focusing on Public Policy. They have also produced some public service announcements that Regal Cinemas will be showing nationwide.

The other NDSS news is that they are revamping some of their policies regarding the Buddy Walk program. They will now have a licensing agreement that requires a 7% net donation to go directly to NDSS. I personally do not have any problem with this--but there were many at the conference who were infuriated. Keep in mind that many groups did comply with the "requested" 10-30% of net donations, but others would send NDSS only $500, or nothing at all. I don't want to get into arguments about this, but it seems to me that 7% is a reasonable amount.

I missed the most exciting part of the conference though--I couldn't get child care for Thursday, so I didn't get to go to the Capitol to meet Congressmen/women and Senators to discuss the Down syndrome Caucus and other issues relevant to the Ds community. By all accounts, those who went had great success.

The first evening I happened to walk past a line for hors d'oeuvres and someone saw my name tag and stopped me. It was my online friend Kathy R from the Michiana Down syndrome group (Northern Indiana and Southwest Michigan)! We had never met in person, but used to correspond about our kids with Ds. Her son, Danny, is the same age as Hannah, and they homeschool as well. It was fun to meet her in person. I met many other new friends, from all across the nation, and some from Canada as well. I went to dinner with new friends from the DSA of Charlotte, NC, and also hung out with one of the researchers from the DSRTF. It was a great experience.

I've been to many many Down syndrome conferences and symposiums. If you have someone in your family with Down syndrome, I highly recommend that you attend at least one national conference--you'll come away excited and energized (well, after a good night's sleep in your own bed).

I had been hoping to meet up with some of my old college friends who live in the DC area, but the timing didn't work out. I think I'm going to have to plan another trip to DC just hang out with them! And meet up with my legislators...