Tidings of Joy!

Merry Christmas!

Hoping you and your family has had a blessed Christmas!  We've been having fun, with all of us together.  There's nothing like having all three offspring boisterously singing in the back seat of the car on the way home from church!  

One of our traditions is that the kids get to open a gift from another sibling on the 23rd and 24th.  This lets them focus on their brother or sister instead of the exuberance of Christmas morning.    This year Chris chose to give Hannah a Lego Fire Truck set. A perfect match.  Chris is a mastermind Lego builder, having a good 15-16 years of Lego engineering.  Hannah is slightly obsessed about becoming a Firefighter when she grows up.

Hannah has played with Legos, but mostly free-form buildings and space ships.   There is a lot of fine motor skill required to build a set, and quite a bit of attention to follow the directions.  Chris did an outstanding job of mentoring her through the construction--just enough help so that she didn't get frustrated, but supporting and encouraging her as she wandered through the pile of 200+ tiny pieces.

Victory!

I know that Hannah would not have tolerated my help if Chris wasn't there (it's that teenager-independent-from-mom-thing).  Thank goodness for siblings!

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Kate has been busy documenting some NanTalk (since I seem never to write her silliness down these days). Here's a sampling:

Hannah discovers a cardboard cracker box in Kate's wastebasket as she's taking out the trash....

Hannah: "Kate? I found this, and you didn't finish it."                                               Kate: "They're stale. That's why it's in the trash."
Hannah: "Dad! Look at this mistake of Kate's. She doesn't know how to recycle."
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(Antecedent information: Hannah is fixated on the Disney World Haunted Mansion--she's never been there, but she both loves and hates it.)
Kate, saying goodnight to Hannah at bedtime.
Hannah: "Kate? How do you think they made the Haunted Mansion?"
 Kate: "Well, I think they use robots and lights to make those scary things."
Hannah: "Like a blood-curdling ghost?"
 Kate: "Yes, but it's just pretend."
Hannah: "A pretend blood-curdling ghost?"
 Kate: "Yes."
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A joke:
What is red, wet, and lives in a jar?
Pickle-me-Elmo!!!

Piano girl!

Hannah had her Christmas piano recital this evening.  She did a great job, but the lighting was so low the video didn't come out very well, so I'm sharing this morning's practice.  Yes, she is wearing Ugg boots with her bathrobe (at least she's cozy!).  It reminded me of when Kate was young.  She'd go to harp rehearsals in short-shorts and cowboy boots!


Nan's playing a jazzed up version of Jolly Old Saint Nicholas!

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We're so proud of her hard work!

Hello USA!

Kate's HOME!   She's been home for more than a week, but we've been so busy we've hardly been around!

She landed in Richmond around 12:15 a.m.  Exhausted, of course, after 27+ hours of traveling and no sleep.   We forced a nap on Hannah earlier in the evening, so she was mostly functional for the airport.  

(Yes, Hannah calls Kate "Tater".  Don't tell anyone.) 

The sisters!

Another grand welcome from Hazel!

So far so good! We took a quick jaunt to North and South Carolinas to see grandparents and friends who were eager to see Kate.  This week has been kind of crazy since we're updating our kitchen and everything is askew.  We finally got our Christmas tree--but it's not in the house yet...

Chris comes home next week, so we'll have a full house.

For a finale, here's a short Hannah-in-action video for your viewing pleasure!  Slightly back in time, from farming and Thanksgiving.

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774 Days

Hi everyone!  This is Kate.

I'm finishing up here in Jordan and will be returning home on Monday after 774 challenging, exciting, happy, sad, Arabic-filled, lonely, fulfilling days in the Peace Corps.  It's so hard to describe what this experience has meant to me--I know it's changed my life.  And I know it wouldn't have happened were it not for my mom and Hannah.

After Hannah was born, as I was growing up, I knew I wanted to do something related to children with disabilities, especially Down syndrome.  My junior year of college, I thought I might become a speech therapist, and visited graduate schools in that field.  I also considered becoming a lawyer specializing in adoption--specifically of children with disabilities from other countries (a la Reece's Rainbow).  That was also the year my mom suggested the Peace Corps.  I knew from the moment I started the application that I would be accepted.  I was invited to become a special education teacher in Jordan, a small country in the Middle East.

 

Me soon after arriving in Jordan

In the beginning, I lived in a small Bedouin village for training.  We had intensive Arabic classes every day, coupled with technical (special education) trainings.  We also had a practicum in the special education center in my host village.

After two months, I moved to my permanent site, in another small village.  These people were farmers, not Bedouin, and my village was filled with greenery instead of desert.

The view from my house!

Above all, the thing I love and will miss most from my Peace Corps service are the people.  My neighbors, my friends, and especially my students.  I learned Jordanian sign language to communicate with my neighbors and students.

Qosai, A'atif, and Battoul, students at my center

My friend Natalie, Islam (a student), and myself at Jerash, a Roman archeological site

Ali and Fatima, students, on a picnic in a nearby village

My special education center consisted of 20-30 students from the ages of 5 to 21.  My students were deaf and blind, and had Down syndrome, learning disabilities, autism, paraplegia, dwarfism, ADHD, congenital defects, psychological and behavior problems, and muscular dystrophy.  My experience teaching at the center gave me experience with all types of disabilities, but the most important thing it taught me was that society is one of the largest factors in how much a person with a disability can achieve.

For instance, my student Mohammad Jamal is in a wheelchair.  The story his mother told us was that she fell down while pregnant, harming baby Mohammad in utero, and that's why he is paralyzed.  He is cognitively normal, but attends a special education center because the students at a typical school would be too cruel to him.

Mohammad Jamal

This type of pseudo-explanation is common in Jordan.  Families don't want people knowing about their children with disabilities, or if people must know, they invent something that happened to the child, rather than accepting it as genetics or God's will.  This is so that their other children can eventually get married--no one wants to marry a woman with "bad blood," despite the fact that most people in Jordan marry their cousins, just as their ancestors have for centuries.  The whole culture supports the segregation of people with disabilities, not even attempting to "mainstream" them as we do in America.  Add to that fact that the two jobs available to people who fail the end-of-high-school exams are the military or becoming a special education teacher, and you get a recipe for failure.

Children with disabilities in Jordan do not excel because they are not given the tools to do so.  They are not accepted into society.  They are not given proper teachers or care.  Many are not allowed out of the house.  They are marginalized in every way.  We often see stories in the media about the oppression of women in Islamic societies; this is nothing compared to what people with disabilities face.  The Jordanian government is, on paper, extremely progressive when it comes to people with disabilities.  The problem is, there's no trickle-down effect.  Decisions made at the top level by the Higher Council for the Affairs of People with Disabilities are rarely, or if they are, slowly, effected on the ground level, especially in villages.

I have a student with Down syndrome who is around five years old.  For the first week he attended our center, no one bothered to find out his name.  We called him welad, which means boy.  His name turned out to be Isma'il (Ishmael), and he's one of my favorite kids.

Isma'il

See what I mean?  Nothing is expected of people with disabilities in Jordan here--not even names.  Living here for over two years has given me such an appreciation for America--how we give our children pride, expectations, and hope.  I have always known my sister is exceptional.  I never knew before how much our culture and our family has encouraged that. 

Living in Jordan, I've gained ten pounds, learned Arabic, played 4,434 games of solitaire on my computer, and read over 200 books.  I've also formed countless relationships with the people around me, and I hope that my influence has helped open their minds a little.  I've tried to explain that people with disabilities can succeed, can speak, read, write, work, and marry.  I know Hannah is capable of all those things and more.  I wish the Jordanian culture and people were more accepting of people who are "different," and I know that in time someone will prove them wrong.

I set out to write this blog post as an overview of my Peace Corps service.  Instead I seem to have gone on a rant about Jordanian culture.  I don't mean to offend anyone or disparage anything--I'm all about cultural relativism.  However, I think this topic is extremely important, and I hope that this will inspire people in America (and Jordan, if they read this) to encourage their daughters, sons, sisters, brothers, and friends with disabilities to achieve everything they are able to--which is certainly more than we expect of them.

Me, my girl, and my best friend Greer in January

Smile!

Anybody remember this?    She was keeping a secret...26 months ago.

She did it!  26 months, almost to the day!   Can you believe how much she's grown in two years?

The braces are gone! 

She is so excited!

She did so well through the entire process of orthodontia. Hannah was a trooper--from oral surgery to ulcers from the wires, she rarely complained. She was a terrific patient.  I used to go back with her to for her adjustments, but about 8 months ago she told me to stay in the waiting room. She wanted to go independently. Today I had to ask her permission to go back with her to take a picture. She was reluctant to admit me, but Dr. B. convinced her that I should be able to come.  Such a teenager.

We celebrated this evening with popcorn and a DVD.  But she nixed the popcorn.  After two years, she wasn't interested!   Instead, she asked for a dill pickle!   (At least she didn't put a pickle on that breakfast toast this morning....)

 

Creative Breakfast...

I should be glad that Hannah is self-sufficient and independent.


But we might need to tweak the definition of "breakfast".

I know the dentist and orthodontist will be so proud.

By the Numbers

What you knew:

1 Very Abandoned Blog

What you didn't know:

2 field trips to Washington D.C.

                     

3 natural disasters within a three week span:
        Earthquake: epicenter was 40 miles from our house.  No damage.
        Hurricane: Lost one tree, one window and everything in our fridge
                          (five days without power)
        Tropical Storm:  Drowned the garden and beat up the raspberries

7 airplanes (and 2 trains) to travel to and from California and New Mexico.

16 Museums/Aquariums/Zoos/National Parks

19 years since I saw my college roommate!   I still love her. A lot.

58 days until KATE COMES HOME!!!!  Her time is almost up, and she'll be home before Christmas! w00t!!!

100+  good times with my sweetheart, my boy, my girl, and my friends.

Slim

 Hannah might be called slim (or Slim Cooley).   She's actually just a regular-sized young teenager. I've had many people ask me how I "keep" Hannah so slender.    
I don't.
She is the way she is.

To me, she's not all that slim compared to my other kids.  I'm used to kids who are on the 75th percentile for height and the 5th or 10th percentile for weight.  That works out to be tall and scrawny.  Too thin to fit into slim sized jeans without altering them.   That comes out to be 6'1" and 130 lbs.  Or a tall-size 1 or 3  in juniors.

So Hannah is just a regular, average weight kid. Her height and weight are at the same percentile: 75%.  She wears a girl's size 16.  She's taller than most of her typically developing peers, but she's taller than nearly everyone who has Down syndrome.  It is difficult to find clothes that fit her well, since she is long-waisted.  Her torso is quite long.  Bathing suits don't fit well.

Take a look at her with her cabin-mates from camp this summer:

 She's only 5'3", but she looks like a giant compared to the other girls (not to mention the counselors, who are flanking the girls)!  And she was the youngest in the cabin.

She is nearly finished with her height. She's only grown 1/4 inch in the past six months.  They say that a girl usually stops growing within 12-18 months of the onset of her menstrual cycle.

I can't take credit for her weight or her height. It's pure genetics. We don't eat the healthiest diet.  It might be healthier than most, but not by much.  Her favorite foods are carbs and proteins. She loves pasta and meat.  We used to call her a pastatarian, but she likes to say she's carnivorous. She will eat nearly any vegetable, but doesn't enjoy fruit very much. We use very few prepared foods, and do quite a bit of baking (bread, cookies, scones, muffins, etc). Her favorite lunch is either macaroni and cheese (sometimes homemade, sometimes doctored-up Kraft or Annie's), or it's a wrap with salami and cheese. Neither very healthy.

I know that vegetables can be tricky to get a kid to eat. When she was three or four we used the TalkTools idea of a "little plate" and a "big plate". We had portions of her meal that were cut into cubes that we would feed her on her back molars to get her to chew better. It was hard work for her, but she could see that the "big plate" had the rest of her dinner--food that she really liked and could eat any way she wanted to. We worked on chewing skills first, and then nutritional intake after. When she had mastered the chewing well enough to transfer it to her entire meal, we started using the "little plate" to introduce new foods or "less enthusiastic foods". She already knew that the "little plate" was non-negotiable. She had to clean that plate before she could get to the good stuff. That's how we started with salad. And broccoli. And fish (which is one of her favorites now!)

We stopped using the two-plate system a long time ago. Hannah will eat whatever is for dinner.  She has favorites, but she still will generally eat anything that comes her way. She doesn't like the stalks of broccoli.  She doesn't like spicy foods.

We have dinner out at least once a week, if not twice. We have a busy schedule, and I'm not one to plan ahead very much, so sometimes it's fast food (if it's lunch), or we're off to a real restaurant.Hannah enjoys Chinese, Thai, Vietnamese, Italian, Mexican, Japanese, and she loves a good cheeseburger. If we go somewhere that has a salad bar, she'll order that, but come back to the table with nothing green at all--it's all pasta salads, mushrooms, shredded cheese....

As far as energy output, we are not very active. We're a bunch of bookworms. If we do any kind of exercise, it's motivated by flab, weakness or embarrassment.

While Hannah's FAVORITE past time is watching DVDs, she also loves to be out and about. I'm all for her being out in the community and learning from someone else than ME. If you've been reading Shenanigans very much, you know how many outsourced activities she does .This fall she's signed up for:

Piano
Swimming
Soccer (2x/week)
Dance
Music/singing
Art class
Tai Chi (2x/week)
Horseback riding.

We did have to drop theater this year due to scheduling issues. I wonder why?

I can't say that I've had much to do with Hannah's weight and stature.I think it's just what she was born with.  She's had vitamin supplements for a decade, and she's had probiotics to help her digest.She has no GI issues with constipation or otherwise. But I know other kids who have been on the same TNI approach and they are heavier, rounder.

It's totally possible that Hannah could have more significant weight gain as she gets older (like, umm...me?).  Right now she's perfect.  And later, she'll still be perfect.

Devastated again

I'm sorry to have bad news to bear.  My friend Tracy, mother of three, passed away yesterday from an aneurysm leaving her beloved Troy, her two precious "olders" and little "Jack", with Down syndrome.   The blogging world knows her as the author of My Little Stinkerie.

I first met Tracy when she emailed me two years ago, soon after she received Jack's prenatal diagnosis. She had read my blog and had a ton of questions and worries.   We had a flurry of emails, but finally decided it was easier to talk on the phone than it was to write.  We talked at odd times of the day, with the three-hour time difference between East and West coast, laughing most of the time.  My daughter Kate and I worked up a whole series of ridiculous name choices for this yet-to-be-born baby.  Of course, she and Troy didn't choose any of our suggestions, but chose to name him after a hero--one of the kings of Sparta.  They both had a myriad of nicknames for this feisty little guy--from Snake to Snorkis to Stinkerie.  

When Jack made his appearance, all the worries and doubts about Down syndrome she carried disappeared.  All there was left was love. Tracy was totally smitten by Jack.  She ooh-ed and aah-ed over every inch of that baby.  And though he might not admit it, Troy was captivated as well.  

Tracy was a mother who loved, loved, loved her children.   She advocated for each one, for each one had their own special way of learning.  She loved her doggies, and her beloved Troy.

Please pray for Tracy's family and close friends.  

Movin' on out

No more dorm life!   Yesterday we officially moved Chris into his rental house down in Williamsburg. He's been staying there off and on this summer. Since he has a summer job now, we figured we'd better get the bulk of his stuff moved in.   I'm sure he'll appreciate having a real bed now!  No more old futon.

The Supervisor

His house is cute on the outside, and "college" on the inside!  

Three Men and a House.  One is vegan, one is vegetarian, and one is Chris.   I know they're going to have a great year!  

Nan Talk

Hannah and I were in the car.   I had a small burp.  I said, "Excuse me."

Hannah subsequently followed up with her own burp.  She said, "Excuse we."

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Long live Elvis!   We were at the Williamsburg Outlets the other day (visiting Chris).   Hannah was so excited to see an Elvis store!


Only problem was that it just looked like a "L-Elvis" store:

Research Study 4th Visit

Friday was our last visit to Kennedy Krieger.  We are always met by Miss M., the Research Study Assistant.  She's our guide and chaperone throughout the many-hour long visits.  She schedules our appointments and answers all questions, and waits with us through all sessions.

First stop was Neuropsychology.   Hannah was happy to see the psychologist again (she loves those tests, crazy girl).   She was in there about 75 minutes while I filled out the parent questionnaires--they always seem to have very obvious questions that are targeting the autism population.   When she came out, it was my turn to be interviewed by the psychologist. She is quite nice. She began the interview with me, recording answers as she proceeded.  She started laughing when she got to the question about whether Hannah could/would initiate a conversation with unfamiliar people (answer is: Yes).  Apparently, in the middle of one of Hannah's tests there was a picture of some kids in costumes trick-or-treating.  There was a witch, a clown, a cowboy and a few other costumes. Hannah answered whatever question was asked, but then started a conversation about how the Egyptians would remove the brain from a dead person's head in preparation for mummification. Sometimes Hannah's input to conversations seem total non-sequiturs. But they never are. The psychologist looked closer at the picture, and sure enough, there was a kid in a mummy costume!

All the testing went well. We had a quick lunch before heading over to the medical side of things (a short drive to another building). I was looking forward to hashing ideas out with Dr. Capone. We were in the waiting room for a bit until Miss M. caught up with us. I was surprised and disappointed when Miss M. mentioned that Dr. C was not there. He had a family emergency and had to go to Connecticut that morning. I was unhappy that she hadn't told me two hours earlier--she knew all along that he wasn't there.   Grumph.

I was able to have a conference call with Dr. C, but it wasn't the same as him being there.

So here's the low down: 

He has not received any reports of regression when ending a course of Rivastigmine.

He believes we could proceed safely with using Rivastigmine.

He did not really answer my question asking if he had any patients who have been on a long-term course of Rivastigmine.

Possible long term side effects would not involve neurology, but instead would  involve the same side effects they were watching for in the study:  nausea, vomiting, eventually ulcers would be possible. These side effects have been reduced substantially by slowly weaning in the dosage (similar to what we did in the research trial). Side effects to this point (in the body of research) have been relatively limited.

If we decide to proceed with the medication (the official medication--they cannot reveal that Hannah did or did not receive it), we can add in the ginkgo to her supplements. Ginkgo addresses the excess GABA in the brain, but Rivastigmine works on the acetylcholine channels, so there should be no interaction between the two.

His last comment was "There is no question that uncertainty comes with the territory."

So, that left me with still not having any way to make a decision.  James and I have to pray and ponder.  
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It's amazing how quickly the time has passed.  We started this drug trial in January, and now it's over.  We started with it to advance the body of research in the Down syndrome population.  Now we have to figure out if we want to make the decision to make this about benefiting (or, possibly, damaging) Hannah.  Switching from a global perspective to a personal one is going to take some time for me.  We have seen positive changes in Hannah's language and memory--larger gains than we have seen before.  Should we stop now? Should we see where it leads?  We want to provide Hannah with every opportunity to succeed.  Is this an opportunity?  Or a temptation?

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If you're new to this thread, I encourage you to start at the beginning.  If you have a child with Down syndrome, this research study may have implications for your child.  Begin here.

The end of the Research Study

We're heading back to Baltimore today.  The final visit to Kennedy Krieger is on Friday.   Hannah's got a long day of testing ahead of her (cognitive, medical).   Fortunately she loves that stuff.  I think it's because it's a novelty; she thinks it's fun.  I never test her.  I know exactly what she knows, since I'm with her so much, so I don't need to test her.

Our "field trips" this time are to visit Glen Echo, the home of Clara Barton.   Hannah read the Magic Treehouse book about the Civil War and she's been interested in Clara Barton ever since.  She's read a couple of simple biographies about her, so the next logical thing is to go see where she lived!    It's just outside of Washington, DC, so hopefully we'll get there for the noon tour today.   Then we'll head over to Annapolis to stay with a college friend of mine.

After the doctor's appointments hopefully we'll have time to head over to the Flag House.   Hannah's music class is working on patriotic songs, so what better place to go than the place where the flag was made that inspired Francis Scott Key ?    I remember taking the older kids to the Widow Pickersgill house--at Chris's request.  He was about six years old (pre-Hannah), and was quite the little patriot.  Since that time, the Pickersgill House has grown up and seems to be a nice small museum.   We shall see!   We won't make it to the Fort, since it's Friday afternoon---traffic traffic traffic!

James and I have been mulling over the options regarding continuing with the Rivastigmine medication.   We both are leery of long-term medications, especially ones that don't have a track record.   This medication has only been used in the Alzheimer's population--which is generally a population that is reaching the end of their lives.  There is no information about how it could affect an adolescent.   We also don't know if there will be any regression.   Will she keep the gains she's made?  If this medication is helping to clear out the amyloid plaques that have building up since she was born, how long will it take before they build up again? 13 years?  How much experimentation are we willing to risk?  (Answer: not a whole bunch)

I have many questions for Dr. Capone, and our pediatrician here.  I wonder if it's a good idea to have her take it for 6 months on, 6 months off...I wonder if we should just drop it entirely...   I don't think the doctors have answers to what I want to know.

I have a very dear friend who says, "What Would Beth Do?" when she has a problem with a kid or a spouse.   She cracks me up.   She only says that because she's so patient, gracious and merciful, whereas I am just straightforward, no-nonsense, tell-like-it-is.   If I don't like it, you'll know it.

So, tell me, What would you do?

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To follow up with this post, click here.
 

Elvis

Hannah is a big Elvis fan.  I don't know how that happened.  I do my best, but apparently, that wasn't good enough in this case.   She's a rockabilly girl, and there's nothing I can do to change it.

Last weekend I noticed that there was a concert at our local State Park--Elvis Elvis ELVIS!!!    There were three Elvises.  One was a younger Elvis, the other was a 70s Elvis.   And the third one was a 5 year old boy who was the nephew of the 70s Elvis.  Both of them had sequined jumpsuits.  Ummm.  That's all I can say about that.

Hannah had a blast!  She made friends with all the senior citizens.   She bought a CD of the 50s Elvis impersonator.  And she's been rockin' ever since.

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Nan Talk

Hannah's been on a roll lately--lots of new language skills and showing us more and more memory tasks and understanding innuendo.

Two funny things today--one on purpose, the other, a slight misunderstanding:

1.  Hannah was eating hard boiled eggs as part of her lunch.   She had a little burp.  She said, "Egg-cuse me."

2. Her computer was not behaving.  She said, "I need that Mozzarella Firefox to come up."


Bonus:  Her latest joke:

Q:  What kind of suit does a duck wear?


A:  A ducksedo!

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!