March 23, 2010

Delay of game

I'm glad I whet your whistle--anticipation makes you all the more enthusiastic! However, I have temporarily added an extra child to the household for a week. This little mite has been here before. Baby K. is now 3 1/2 years old, and she's about the size of an 18 month old.
She's walking, talking (when she wants to) and going up stairs (dangerously). She also doesn't like it AT ALL if I leave the room, even for a second. I'm hoping that's just a by-product of not getting a nap today. This could be a very long week.

Our house is not toddler-proof. Yet. So far, Baby K. has been showing me all the flaws in my cleaning and organizing. I think I will be kept on my toes all week! Hannah's my only back-up since James is traveling this week.

So I'm off to make safe rooms, and not giving you homework yet.

p.s. Hannah's birthday party was a blast!

March 20, 2010

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. 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. 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:

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. 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.

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.

March 18, 2010


Hannah and Sara Rosenfeld-Johnson

During our drive up to Philadelphia the other day, I was thinking about blogging. I realized that I have not spent much time discussing my two biggest passions in the Down syndrome world. What is up with that? 18 months of blogging and I've barely started on the good stuff!

Here they are:

1. Early Reading

2. Oral Placement Therapy

These two ideas are the foundation upon which we built Hannah. Really.

A foundation.

Infrastructure. Concrete. Supportive. Steady. Footing.

Both early reading and OPT (also known as Oral Motor Therapy) have made a huge impact in Hannah's life. Out of all the things we've done with Hannah over the past 12 years, these two changed her life's trajectory.

So I'm giving you fair warning! There are going to be posts about this, and you're going to have homework to do!

Since I've got a million details to which I must attend in the next couple of days, I'll give you a quick synopsis of our trip to Philly.

It. Was. Great.

Encouraging and fun. Even with silly faces.

March 13, 2010

Feeling better

We're on the upswing! Thanks for all your well wishes. It really is nice to be able to breathe again. Literally. And Hannah is much improved over yesterday's complete whine and mope session. She had fever off and on for 36 hours, but now is perking up and ate a complete dinner. She doesn't sound like herself yet, but I think she's going to manage our trip in another couple of days.

We are planning on going up to Philadelphia on Monday, and probably just turning around and coming home again on Tuesday. If I'm too tired, we may come back on Wednesday instead. It's only a 5 hour drive, but we won't be leaving until around 3:00. That puts us near Washington, D.C. at rush hour, which won't be pretty--adding on another 90 minutes at least. Hmmm. I'd better think this through!

Yesterday, when Hannah was not dozing, we went through a big box of pictures. She loves to look at photos from when she was a baby. I saved these three out to share with you.

six months old--pucker up!

two year-old birthday, with Emma

The Mop Fairy, age 27 months. (She loved her mop.)

She was such a cute little girl! No fair that she's growing up so fast!


Kate called today to chat with The Birthday girl. Hannah didn't even remember it was her actual birthday since we celebrated on Thursday! It was fun to talk to my big girl. A little bit later I managed to catch Kate on skype--with both the video and audio working!! That was really great! We haven't 'seen' her in months! I hurried Hannah out of the shower so she could see Kate.

Kate is doing well. It's a difficult job, and hard to live in a culture so different from what she knows. She had a little break though. This weekend (Fri/Sat) she went with the other Peace Corps volunteers and to meet Vice President Joe Biden in Amman. It was fun to be in the city--I don't know which she enjoyed more--meeting the VP or having sushi for dinner! When she returned to her village today everyone asked her what she did in the city, and she had to explain that Joe Biden is the "Under-Obama". That was the only way they could understand who he is!

Chris has been home this week for spring break (as you might have surmised from the video in the previous post--I know you're smart like that!). He heads back to school tomorrow. We're all hoping that he doesn't catch this cold. He has a very rigorous academic schedule and can't afford to miss a beat. He's been working on a computer science project and doing some research for a paper in his Emerging Diseases class. Not the best way to spend Spring Break, but at least he had his dog at his feet while he was working!


One last thing--don't forget the time warp tonight. (I'd quote Rocky Horror here, but I already did on Facebook and I don't want to bore you more.)

March 12, 2010

Best Laid Plans

are easily corrupted by germs.


Me- cold virus morphed into pneumonia diagnosis

Hannah- began same cold virus.

Yesterday we had planned Hannah's family birthday celebration. The whole day was scheduled, but by the end of pottery class (first thing), she was petering out and I needed to see the doctor. Quickly followed by nap time.

Birthday restaurant plans cancelled at Hannah's request. She opted for chicken noodle soup. I got to have prednisone, antibiotics, narcotic cough medicine and a new inhaler (I have reactive airways, so pneumonia or bronchitis is not infrequent).

Hannah rallied a bit after opening her birthday gifts (who wouldn't be energized with a big check from Grandparents?), enough so that she thought going to Friendly's for ice cream was a good idea.

She didn't sleep very well during the night (and we did actually put her to bed instead of leaving her on the floor--good parenting skills!).


I'm feeling some better. She's got a fever. No trip to the Crayola Factory this weekend. We're hoping she'll be well enough for a quick jaunt to Philadelphia for the speech evaluation on Monday/Tuesday.

For now, toast, tea and TV are the order of the day.

March 9, 2010

In Four Days...

I'll have a 12 year old! It just seems impossible. But there is no pretending--the girl is growing up. Changes are afoot! Hannah will be taking on some new responsibilities when she turns 12.

The older kids had daily/weekly scheduled chores from about age 10+. Things like vacuuming, doing the dishes, pet care, mowing, trash, laundry, dusting, bathrooms, etc. Hannah does these to some extent, but now it's time for her to give her allotment of slave labor. She has some chores to master soon.

#1. Dishes. She already does the dishwasher, but she needs to start doing the hand washing. This is James' realm since the older kids moved out. I'm the cooker, he's the cleaner. And I make a mess when I cook. Why use one pot when you can use five instead?

#2. Her own laundry. She's been doing Chris' laundry for a year or two, but she hasn't had to do much folding (he pays her $1.00/load), and he's not weekly. But now it's time for her to step up and do her own--wash, dry, fold, put away. Laundry is also James' realm, but I'll be the one to supervise Hannah on this since she'll likely be doing hers during the week.

We're molding her brain into "wanting" to do these things. We're white-washing her into thinking that chores are a good thing. Teamwork! I have no illusion that she'll fall for this, but it might last for a week or two.

She also will be learning to take her vitamins on her own. She measures them out already. She has no trouble swallowing them, plopped into spoonfuls of applesauce, but we're the ones shoveling them in. Soon she'll use her own spoon. This should be an easy transition for her.

But this will have to wait a bit because Hannah and I are taking a road trip! Friday we're heading up through Baltimore to Pennsylvania. For her birthday I am taking her to the Crayola Factory and we are very excited! My girl loves her some crayons, that's for sure! After that, we're going to Philadelphia to stay with my brother for a couple nights. We'll finish off the trip with an oral placement evaluation with none other than our favorite SLP, Sara Rosenfeld-Johnson. Isn't that a nice birthday present? Hannah's speech is relatively clear, but she still needs some tweaking with jaw strength and normalized tongue movement. I'd love for her to develop a clear crisp "s" and a more passable vocalic "r". I know what I need to do to get there, but I lack motivation, so we'll take a hit where it hurts the most (bank account) to get my fanny in gear and back into the oral exercises she needs.

When we return home, we'll have life in the fast lane! The very next day Hannah is in a short play for her theater class, and has her last pottery lesson. Plus, her very very good friend Shea (and my very very good friend Roxanne) will be arriving from North Carolina for birthday festivities!

Hannah has planned her celebration to include lunch at her favorite pasta restaurant, Angelo's, to be followed by a game of Lunar Golf (pretty cool place--mini-golf under black lights). She has five friends coming, and all of them are homeschooled (bonus--golf won't be crowded on a Friday at lunch time!). It should be lots of fun!

The best of everything is that it's warm outside today, and spring might actually come after all!

March 8, 2010

My Artist!

Hannah has had a big spurt in her artistic endeavors. She has cut back her coloring considerably, and now is into making odd (and frequently cute) mosaics using scissors, construction paper and tape. Lots of tape. Practically laminated with tape. That makes it difficult to scan or photograph.

She also has been drawing lots and lots.

At least 4 times a week we have an "art show" at the dinner table. No matter that there are only three of us. Usually I am the Emcee of the show, introducing the evening's selected artist, who invariably is our own Artist-in-Residence, Miss Hannah Duston. Then we page through the pile of papers she has produced during the day, sprinkling in descriptions and items of note. It ends with applause and a bow.

(One unsolicited tip, when admiring a child's artwork, never ever assume you know what it is supposed to be. You will be wrong more than 75%, and have a disappointed artist. The trick is not to talk about the elephant/rabbit/robot that might or might not be under a dump truck, but instead describe what you see in terms of color and movement: 'Wow! I see that you've used both crayon and pencil here. This red area looks really strong the way it arcs across the page...and this green part is really interesting. Tell me about it.' Don't judge and say, "This is BEAUTIFUL!!" because sometimes it might not be supposed to beautiful--and you won't know when it is.) (it does help if the artist actually labels her own art work) (end of tangent)

Ladies and Gentlemen, I'm please to introduce Tonight's Featured Artist, Miss Hannah Duston! These are works done during her late 11 year old phase, with a final flourish from art class, received today in her portfolio. All other pieces originate from home.

First attempt at a penguin, tape

Mosaic construction paper on construction paper, COVERED in tape. Placemat size.

glitter glue, marker, on printer paper (please note yellow line on road)

tempera paint on construction paper

construction paper with crayon and pencil on printer paper; tape.
(how 'bout those eyebrows?)

Crayon on printer paper

Pencil and crayon on construction paper, notebook paper, with tape.

pencil and crayon on construction and notebook paper, with tape

colored pencils (Wizard of Oz fans will recognize the yucky apple trees)

A self-portrait from art class. Quoting the artist, "I was really crazy that day!"

Art class self-portrait a few weeks later.

We really are so proud.

March 6, 2010

Picture Round Up

Last weekend at a fun fundraiser! It really was fun--dinner, dancing and fancy hotel while Hannah had a sleepover with her friend Fran.

Dr. Seuss's birthday! Horton Horton everywhere!

Thursday was bottom braces day. Not much chewing going on here these days.

Pottery class--using a template to make a picture frame.

Post-swim today. She's getting the hang of Special Olympics swimming.

March 4, 2010


Overheard while Hannah was getting dressed: "Aha! I found you, silly underwear! You can't hide from me!"

March 3, 2010

It's that time of the year....

Girl Scout Cookies....

Love them and hate them.

I am not a good accountant. And I always seem to forget or misplace someone's order (sorry Jennifer C.!). I should put a forgiveness clause on the order form. The good news is that we still have a month to fix things if I screw them up.

Fortunately, Hannah is a little more motivated and organized than I am. So far she has sold 14 cases of cookies. That's much more manageable than the 38 she sold a couple years ago.

Hannah was ready--this year we made our tags early, and instead of torturing her to make 50 thank-you notes, we just copied them and cut them out. She was in charge of cutting, hole punching and the ribbons.

I copied the orders onto the back of the tags, and she filled the bags and tagged them.

I supervised and did quality assurance tests on the products. Who'd have guessed that Tagalongs are still the tastiest?

We knocked out more than half of the orders in 30 minutes.
Now to deliver them.

Now somebody put that kid to bed--it's 10 p.m. and I need to eat more cookies.

March 1, 2010

A Puppet Show

The Princess and the Frog King
by Hannah (typed by Mommy)

Once upon a time a princess was eating dinner with her father, The King.
There was a familiar knock.And there was the Dog-Wizard!

The Dog-Wizard said to The King, “Do you want to be a frog? I’ll turn you into a frog!”

And it happened!

The King now became a frog.He said, “ribbet”.

The Princess was so upset! She called 911. She talked to a policeman and a firefighter named Bobby. They came to help the frog turn back into The King.

They tried a potion. It didn’t work. They needed help from the Dog-Wizard. The Dog Wizard came and said, “Frog, you’re a heap of trouble.” Then he turned the frog back into The King.


The Dog-Wizard went to his carriage and went away.

The Princess was so happy she put on a show!

And they lived happily ever after.

The end.