Odds and Ends

Wow.  I guess I totally haven't been writing anything lately, have I?   I was supposed to write a couple of posts while we were on vacation.  I actually wrote some of one of them, but it was so boring that I dumped it and thought I'd start fresh.  But I didn't. Yet.

And nary a beach photo did I share.   Humph, you say, and rightly so.    I shall at least remedy some of your suffering.

Annual Dairy Queen ritual....

This is actually Chris...

Team Pirate, performing during our Scaventure game!

Hoping for a prince!

Shirley Temple with FOUR cherries!

Baby nurse shark--the fisherman let Hannah throw it back into the water.  Pretty cool.

Mmmm.   That's North Carolina for you!

Shea (Hannah's BFF) was very creative with the nail polish!

My BFF, Roxanne

Vacation disappears so quickly!  We've been home for a little over a week, and we've already forgotten those sandy toes and seagulls.

We arrived home to eager doggies.  Hazel had an odd tumor removed from her leg a couple weeks before our trip (benign!).  She had a long recovery, and she finally was cleared by the vet just before we came home.   Our great house/pet sitter kept her happy and safe.

This past Friday was Hannah's piano recital.   I still have to download the video, so that will be another post.

Kate is down to six months left in the Peace Corps!  My parents are treating her to an escape vacation to Greece. The three of them are there right now! They've done Athens, and are currently in Thessaloniki.  Next up (Kate's choice): Naxos!

James surprised Hannah with tickets to go see the Imagination Movers (yes, she still does enjoy preschool music, which, in my worldview, is preferable to most of what other 13 year girls are listening to).   She has a crush on Rich.

He actually noticed the sign and he winked at her!

And Smitty gave her a High-5!

Just yesterday, Hannah finally braved sliding down the fire pole at the playground! When she was little she had a bit of an accident on one, and she's had a love/hate relationship with it since. Not anymore!

Today, we said goodbye to that long hair.   She had 6 inches cut off, and she's loving it!

My personal news of the week is that I was diagnosed with Lyme Disease.   I don't have many symptoms, so hopefully the medication will knock out what I do have. When I'm better I might have to have a Mojito party--limes for the Lymey!

New Year, finally a new post!

So, instead of fervent apologies and excuses, I'm just going hope for blogger amnesty and jump back into the fray!

All has been well, just busy, busy and more busy.    The holidays were great--Christmas calm and quiet, New Year's spent with my parents and wonderful friends.

Hannah's ornament this year was a firetruck.  She wants to be a firefighter when she's older.

We Skyped with Kate on Christmas morning!  This is the closest as I could come to getting a picture of all my kids at one time! (Good news is that I'll get the real thing in 10 days!!)

We had a white Christmas! 

Yesterday was our local Bone Marrow Drive!  Lois made an appearance to the joy of many.  

Lois received a SuperLois cape!  Look, she used her amazing powers to make her Daddy disappear before our very eyes!

We raised $2,500 and registered 53 new people to the registry in honor of Lois.    If you haven't joined the registry yet, go here to find out how easy and painless it is.  There are about 5,000 bone marrow transplants in the US each year, however, there are 10,000 people who need them.   You could save a life.  

After the fun and excitement at the marrow drive, we were up to more Shenanigans at our house.    We hosted the Funquest group for a mystery dinner last night!  Twenty teens/young adults with Down syndrome spent the evening socializing, playing games and having a mysterious dinner.  It was lots of fun, and they all did pretty well navigating the menu.  Everyone got a menu with items like "Moo Juice", "Oink Oink" and "Don't Stab Me With That!".   The wrote down their orders which were filled in the kitchen and brought to them in the dining room.  Some were surprised to have ordered a knife ("Slice and dice") and a cube of Jello Jiggler ("Wiggly Butt") and some carrots ("Bugs Bunny's Favorite").    Fortunately, we had 6 courses, so everyone eventually got a fork and a napkin.   It was messy and fun chaos, but everyone had a good time.

 (some crazy dancin'!)

It was great fun.  I asked Hannah what part she liked the best and she said, "Hanging out with my friends!".  I thought for sure it would have been the "You're such a sweetheart" (cupcake).

I'll be back soon--I promise!  Hannah's starting in a new research study and I'd like to share it with you.

#25/31 Learning from Others

Sometimes homeschoolers are a little too insulated.  

We generally don't use any profanity in our house, nor do we use slang for anatomical terms.

I remember when Chris and Kate were about 9 and 11.  A neighborhood kid used a word that they didn't understand.  So they asked us what it meant. It was slang for a "male private part".

James and I decided that we needed to give these kids a real education, so we calmly taught them every single foul word we knew.  (Don't forget James was a sailor....)

We spent a week politely saying things like:
"Where the *&% did I put that #$*@-ing washcloth?"    It was great fun!

Fast forward a decade or more, and we are having the same problem.  Well, it's much lighter weight than male body parts at this point.  

One of Hannah's friends (typically developing) was at our house the other day.   He was saying something about farting.  In our prudish house, we use the babyish term "toot", or the more formal, "passing gas". (As an aside, as a child, my circumlocutory family used the term "effluviate" for any malodorous fumes.)

Hannah figured out what "fart" meant by using "contextual cues".

She and L. had a great time making farting noises.   They used the word "fart" lavishly. For quite a while.   It was a bonding time of sorts.

They later had fun playing paper airplanes, PlayMobil, and Hot Wheels.  And no residual effluvium.  It was a fun play date.

L's mother later inquired whether her son behaved well.   I said yes, aside from teaching Hannah the word "fart", but that didn't count. Hannah was long overdue to learn that one (and learned it well, she did!).   I'd much rather have her laugh when it is appropriate than to not understand when something is funny.

Lately...

Getting her swim game on.

Breast stroke

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Hannah invited Sheena to a tea party!   Hats required.  Hannah chose a dorky clown hat.

Sheena is Hannah's friend she met through her Miracles in Motion dance class last summer.  They danced together here.  Sheena is a very thoughtful and encouraging friend to Hannah.  She is the perfect sister substitute!

 

Just like Hannah's sister Kate, we don't get the chance to see Sheena as much as we'd like, so the tea party was a treat for everyone.

Hannah planned and helped prepare the tasty menu:

Tea


Fizzy Raspberry Lemonade Sparklers


Pinwheel wraps


Strawberries and cream


Pinklalicious Cupcakes

Here's the recipe for the Raspberry Lemonade!
 (Sheena and I both thought "those are tasty", and potentially even more tasty with a splash of rum or vodka.)


1 1/2 cups superfine sugar (process granulated sugar in food processor)

2 cups fresh lemon juice

2-3 cups sparkling water of club soda

1 cup strawberry or raspberry puree

(Raspberry puree:  1 lb frozen raspberries, thawed.  Puree in food processor until smooth.  Press puree through a fine-mesh sieve.  Discards seeds.   Add 2 Tbsp sugar or more.)

Combine lemon juice and sugar.   Chill until ready to serve.   Add sparking water and puree.  Serve immediately.
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Now, my cheating method was to use that Fresh Lemonade from the grocery instead of squeezing all those lemons.  It was already sweetened, so I skipped the sugar.  I used club soda, and made the puree as directed.  Hannah  also threw in a few whole raspberries to make it look fancier.  I wish we had fancy straws and those little cocktail umbrellas!

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Last week Shea and Roxanne came to visit on their way back from a major homeschool field trip to the Marine Science Consortium on Wallops Island, VA.  

Lucky for us, it was Shea's birthday!   I used to make Shea's birthday cakes when we lived in North Carolina, but I haven't had the pleasure of making Shea sweeter in five years!   I did take the easy way out this time.  I just baked a cupcake.  A super-sized one!

Happy 10th Birthday Shea!!

Later on the girls shared a riding lesson...I didn't get a good picture of them together, but here's the Birdie on big 'ol Jake.

Guess what?   Tomorrow we leave....for two weeks....guess where?

World Down Syndrome Day 2010

This is an encore performance of last year's World Down Syndrome Day! Here are 10 things you can do to promote awareness and understanding of Down syndrome. I originally wrote it for people who don't have a direct connection to Down syndrome. Please feel free to share it if you want. If you've already read my list, then skip down to the bottom for a little more Hannah.

World DS Day is the 21st day of the third month of the year. The date represents the 3 copies of the 21st chromosome. Kinda cute. Now someone explain how October became Down Syndrome Awareness Month??

1. Learn more about Down syndrome! Here is a link to some Myths and Facts about Ds. http://www.ndss.org/index.php?option=com_content&view=article&id=59&Itemid=76 Did you know that 80% of babies born with Down syndrome are born to women under the age of 35? I know teenagers who have had babies with Down syndrome.

2. Talk to your children about people with differences. The way I explain Down syndrome to young children who are curious is to say that when a baby is first growing inside the mother there are directions inside the baby that tell it how to grow, what color hair and eyes it will have and how tall it will be. A baby with Down syndrome has an extra set of directions, which makes it more difficult for the baby to grow and develop. A baby with Down syndrome can learn to do all the things that a typical baby can do, it just takes longer to learn because of all the extra directions. Older kids can learn about chromosomes and how individuals with Down syndrome have an extra 21st chromosome. The medical name for Down syndrome is Trisomy 21. With your children, share what you know, and admit what you don't know about cognitive disabilities.

3. See if your library has current information about Down syndrome. Do a quick online search of your library’s listings for Ds. If they have no books that have been written in the past 5-7 years, please ask them to update their books. Any non-fiction book older than 15 years should be removed from the shelves.

4. Visit Reece’s Rainbow, an international Down syndrome adoption ministry. Learn more about how children with Down syndrome are treated in other countries. It is much like the United States treated individuals with cognitive disabilities 50 years ago.http://www.reecesrainbow.com/ Consider supporting a child’s adoption with a monetary donation. I have given donations in honor of my mother for Mother’s Day.

5. Write a short note to your legislators telling them that you want them to fund the Prenatally and Postnatally Diagnosed Conditions Awareness Act (the Kennedy-Brownback bill). Currently up to 90% of all prenatally diagnosed fetuses with Down syndrome are aborted. It’s important to understand that this is not about pro-life or pro-choice, but rather about providing parents with needed data and support. Unfortunately the worst presenters of a diagnosis of Down syndrome today are medical professionals because there are no mechanisms to train them, to teach them how to deliver that diagnosis and to present the options, all of the options.

6. If you’re a woman, start a conversation with your OB/Gyn about concerns you may have about getting accurate information to families that receive a prenatal diagnosis. Prenatal testing is soon going to change, and the OBs are the first to deliver unexpected news. Bring the doctor a copy of this research: http://www.brianskotko.com/images/stories/Files/italianjournalofpediatricsfinal.pdf

7. Watch a movie featuring a person with a disability: Emma’s Gifts (I’m biased since Hannah and I have cameos in this documentary), Duo, The Other Sister (which I think is pretty funny). **NEW** watch The Specials an online documentary/reality show following young adults with disabilities in England. Each episode is only about 10 minutes long.

8. Contact your local Down syndrome parent support group (just Google Down syndrome and your geographic area) and email them to see what sorts of ways you could help. Usually volunteers to assist with childcare, programs and events are more than welcome!

9. http://www.downsyndromeinfo.org/dreamsinreality Watch this short online video for some inspiration.

10. Remove the word “retarded” from your everyday speech. It used to be a medical term (as did the words “idiot”, “imbecile” and “moron”), but has become such a derogatory word that it is on its way out. The new “R-word” is Respect.
http://www.r-word.org/

Here's my girl, still going places in the world!

Today, I heard two WONDERFUL things. Hannah's friend Shea is visiting us for the weekend. This morning Shea was talking to me and said, "I'm so glad I met Hannah when I was just born. What would I do without her?"

This evening we had a group of friends come over--homeschooling families--eight kids and 10 adults. The kids played outside for a long time, the girls taking turns jumping rope (Hannah's new skill--she can get up to 10 without tangling up). It was a long night, but everyone was in good cheer. Usually Hannah fizzles out after an hour or two of having her turf invaded. But tonight she lasted through all 4 hours of noise, food and fun. The girls were out on the deck jumping rope for hours. When it was time for our guests to leave, Hannah's friend Fran came up to me to say goodbye. With a hug, she said, "I just love your daughter."

Hannah's going places in the world, and she's not going alone.

And we're BACK

(That's only funny if you happen to be an SNL fan. Hannah says it all the time, even though she's never seen it.)

We had a very nice visit, though quite short. I was especially happy to spend time with my very closest friend Roxanne. Her husband has been going through a lot of medical issues lately, so I was glad that I got to see how he/she have been doing with my own eyes. We have been friends for 20 years, and there is nothing like the ease and comfort of a true friend--it always does me good to spend time with her!

Hannah had a good time with her friends as well. I didn't get many pictures, but we did get to see Emma and Abby. Emma invited Hannah to her ballet class, which was ridiculous fun. We had dinner with them as well, followed by some Wii (Hannah couldn't take her eyes off of it!). Can you believe that all three of these girls will be turning 12 in a matter of weeks?

We met our good friends Molly and Allyson at Monkey Joe's. We also visited with the Wengers, and Hannah got to try some Irish dance, electric guitar, and a minibike! (Please, no comments about the lack of a helmet...they were going about as fast as I walk...)

Make video montages at www.OneTrueMedia.com

And finally, Hannah had a sleep over with her friend Shea. It was Hannah's first official sleep over at someone else's house. The girls played non-stop and can't wait until we go to the beach in May where they will have two weeks of unlimited playtime!

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.

Make video montages at www.OneTrueMedia.com

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.

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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!