How unusual....

Hannah is holding a mixing bowl.

Do you see anything unusual in this picture?   It took me 14 years to notice.   It's not her very nice nails.

I'm mildly embarrassed to admit that I never noticed her "difference".

Hannah's thumbs are smooth.

No wrinkles on either one.

That means she can't bend them.  She is missing the distal phalange on her thumbs.

Well, actually she has the bones.  They aren't officially fused, but they have no tendons or muscles to move them.

Hannah has had many occupational therapists in her lifetime.  Not one of them every noticed it.

She's had at least five pediatricians and one family physician.  Nobody noticed.

She gets salon manicures every so often.  Nobody noticed.

I've been living with her for 14 years AND I've been her teacher the entire time, and I never noticed it.

She has great penmanship, she can play the piano (and soon enough, the guitar).  She can tie her shoes, sew, use chopsticks on occasion, and pretty much do everything she needs to do.   She just can't bend the upper part of her thumbs.

Hannah was the one who showed me.  She was practicing her spelling words.  She likes to finger spell them to help her remember them (making a motor memory for each word).   She was spelling some word that had an "o" in it.  And it looked like this:

Wow, that's kinda glowing, isn't it?

I asked her to make her "o" more round.   And she couldn't.      Huh.

So after I figured out what was going on, I tried to dig up information, thinking that it was something related to the extra chromosome.   I know that the pinky finger frequently is missing a bone, but I couldn't find anything regarding thumbs.   I mentioned it to our most fabulous pediatrician (the most thorough in the world), and she researched it.  Nada.

Hannah was eavesdropping when I was telling someone about her weird thumbs, and she said, "Mom, were you talking about my incredible thumbs?"  

Yup, I sure was.    And that's what we call them now.  Incredible Thumbs.  

One more unique thing about my kid.

Uh oh...almost missed today! 10/3/12

I have 3 minutes left to get my post in for today!  Yikes!

All I've got today is a couple of pictures of Hannah's busy day.   We had a full morning of school, followed by a few chores and then off to the barn for her first riding lesson of the fall.

First she got a little bit of swinging in with a couple of her friends...

Of course, I only had my phone, so these aren't all that interesting....

How about this wild spider?  I've never seen one like it!   It's about the size of a bit toenail.  Anybody know what kind it is?

 After horsing around, we scurried off to Hannah's art class.  No pictures, since I don't go in and embarrass her.  

Next up was Hannah's guitar lesson.  This was her second lesson.  There's a lot of fine motor stuff going on with a guitar, but she's working it out pretty well.  Her teacher has never been around anyone with Down syndrome before, but he's willing to do what it takes to get my girl rocking!

My meager guitar video won't load.

This is what I get for procrastinating.

Well, actually, that's what YOU get for my procrastinating:  nothing.

As consolation, I will let you know that James and I finally told Hannah that we had a surprise for her later this month: We're taking her to DisneyWorld!   We took her for the 10th birthday, but got sick after the first day and spent most of the week in the hospital.  Yes.  That's how things go some times.

So, we told her we were going--and she totally freaked out--yelling and dancing and forceful high 5's!  It was really funny.  She got her calendar out immediately to add the dates to be sure she doesn't forget (as if....).

That's it for this tired mama.  Hope you're all enjoying the feast of DS propaganda that's taking over blogs and Facebook!  Love to you all!

(P.S.  I cheated.  I post datedthis.   It took me more than 3 minutes to write this....so just pretend that you don't know I cheated)

NanTalk 10/2/12

I witnessed these interchanges with Hannah and Kate:

It was Kate's birthday and we were finishing up a fine dinner at a restaurant.  

Leaving the table, Hannah says, "It is my honor....to tell you....as the birthday girl....that you can carry my leftover pasta."

~~~~~~~~~~~~~~~~~~~~~~~

The sisters were hanging out, and Hannah did or said something funny.    

Kate:  Hannah, you're awesome.

Hannah (seriously):  I know that part already.

Unexpected talents....

When Hannah was little I expected a lot out of her.  I had grand plans for her.  She would be able to speak well, be really smart, have a driver's license, and basically be the most amazing person with Down syndrome EVER.

I gradually weaned myself from lofty goals.  It took me a while to discover that Hannah is going to be who she's meant to be, not who I want to mold her to be.   Yes, we keep high expectations--that means she should be able to behave appropriately in a wide variety of social settings and able to take care of herself independently (laundry, dishes, cooking-enough-to-not-starve-when-nobody-is-home, household chores and responsibilities).

It was only a few years ago that I realized that Hannah was the one who would make the goals.   At this point, I don't really see Hannah learning to drive.  And that's because it's not one of her goals.  At least, it's not on her list right now.   I'm not going to force it on her--and even if I did, it wouldn't be her idea, it would be mine, and so I'd have to be the one to do all the legwork and shoveling information into her.   And that doesn't work for me.  And it especially doesn't work for Hannah.

I was aware of self-determination a long time ago.  It just took me a while to let go of my fairy tale.

Hannah is in the process of creating her own fairy tale.   She's got all kinds of talents that I never expected.  Who would have expected that the girl who played piano for years would take a turn to the wild side?   (don't answer that.)

Yes, Bass guitar lessons have begun.

And she's in a choir now, and actually singing.

Never in a million years would I have imagined that any of my children would have an artistic bent.  Hannah has always been an avid artist, but I never expected her talent.

The Fire Brigade

Interior Design (Horses and Fire Station #19)

A few new Angry Bird sketches!

Another unexpected talent she has is acting.  She loves to perform.  She could live on the stage.

Real Life Ariel and Merida

Yes, that is Hannah on stage with Jason Mraz.

Did you know that Hannah has encyclopedic knowledge about dog breeds?   Isn't that odd? And amazing?

This is a Greyhound, a breed that likely originated in Egypt.

Sports?   Nobody in our family plays sports.  That is, except Hannah.   None of us are coordinated.   Swimming, Softball, Soccer, Dance.

And then there's the just plain great sense of humor and silliness:

I try to keep an open mind, and not have preconceived notions, but my girl is so multi-faceted and she keeps on surprising us.   This isn't what we expected.   It's so much more.  And we love it.

Down Syndrome Awareness Month 10/1/12

Well, not sure I'm going to actually make it to all 31 days, but I'm going to give it an effort!  Maybe it will make me get back in my groove!

It's a last minute commitment, so since my scanner is not on speaking terms with my computer I can't share the Baby Hannah picture I wanted to use.  However, I will pull out an old video montage that I originally posted in early 2009.  

When Hannah was born it was about 6 hours before a doctor suggested that she might have Down syndrome.  We didn't have much time for us to get wound up about a possible diagnosis: Hannah  quickly exhibited significant oxygen needs.   She was whisked away to the NICU of our small hospital.   The assumption was that she had a heart defect and she needed O2.  A cardiologist came late in the day to do an ultrasound of her heart, only to find that there was not a significant defect.  Her problem was Persistent Pulmonary Hypertension in the Newborn.

To me, and James, pulmonary hypertension sounded terrifically better than a heart defect, and we felt relieved.  That was, until the next morning when the Neonatologist explained that there was no medical treatment for PPHN other than offer oxygen/ventilation and pray.   Hannah was transferred to the Big House hospital.   There she stayed, for 3 weeks, crashing and rising, and eventually living.  At one point we were told that she had a 15% survival rate.   But, as we know, She.Kicked.Butt.    She hasn't stopped since.

We had our emotional ups and downs that first year, but we never thought that Down syndrome was a miserable difficult hardship. Our prayer for Hannah was for her to live.  Yes, she did end up needing heart surgery when she was 2.  And she's needed other things too, but we wouldn't change a thing about her.  We're proud she's our daughter.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Homeschooling=independence

So, a month or so ago a friend of mine with younger children asked me about how we actually homeschool.  She wanted to know a little bit about curricula, but more about how I actually "teach".

Well, I rarely feel like I teach.  Yes, I choose workbooks and math curricula, and choose what subjects I think Hannah should study through the year (she loves geography, reading and math, and anything that involves games--in fact she's playing the Game of Life right now with Kate and working on counting BIG money).  But I don't spend that much time teaching.  It's more like coaching.  Or cooking.  A little bit of this and a little bit of that.  I lay out a healthy menu of academic options and we choose what "tastes" the best.   Our long term goal for our children is for them to be independent learners.  We don't want to fill them up with facts, but rather make sure they have the skills to learn what they need or want to know.

We describe our homeschool as "very relaxed".  We usually "do" formal sit-down-at-the-table for a couple/three hours a few times a week.  Hannah needs a bit more supervision with her work than her siblings did.  But that doesn't mean that I don't give her enough space and time to figure things out on her own.    When Kate was in college she had to give a "response paper" after a discussion in class.   Here's a bit of her take on education:

As I mentioned in class, I think education should be towards the goal of self-reliance and self-teaching. I think it is important that young adults are able to read instructions, directions, etc., and complete tasks independently, without having to have it explained to them. I feel that the public school system in this country falls short of that goal: every little nuance of a problem is explained, sometimes several times over, which leads children to believe that they require help to do something. In my family, no one is offered help with schoolwork, because, like the old saying “God helps those who help themselves,” if we did not try, we would not be assisted. Only after we had exhausted all other possible options (reading back in the textbook, trying a new way) would our parents show us what was wrong-- and it usually never came to that.

So, while I was chatting with my friend about "how" our family home schools, I received a text from Kate.   She was home with Hannah, who offered to teach Kate how to make Jello.

Hannah:  Kate, I can teach you how to make Jello.  It's really easy.

Kate: How do you make it?

Hannah:   Here.  Read the instructions.


Ha!  A perfect example of our school philosophy!

P.S.  We'll be easing in to 8th Grade some time next week.  Don't think that we're going to be doing 8th grade work...Hannah's skills range from 2nd-6th grade.  She's making progress, and that's all that matters to us.  She'll get where she needs to be when she's finished.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
An aside for those who are curious about homeschooling:


Every state has their own compulsory school attendance laws.  Here in Virginia there are two paths of homeschooling.  The usual track requires submission of curricula and an end of year assessment (testing or evaluation by a certified teacher).  Homeschooled children are able to receive speech therapy from their neighborhood school if they need it.  In our county all homeschoolers are allowed to take up to three courses at their local public school if they so choose (geometry, choir, German, etc).  This is fairly unusual for Virginia.  It's a nice option for families who want to have a foot in the public school at the same time as they teach the bulk of the academics at home.  It's a pretty relaxed situation here in our town.

The road less taken is Religious Exemption (RE), which is what we do.  The "Religious" part doesn't necessarily mean just Judeo-Christian religions--there are pagan and Native American families who believe that the parents have the authority are to teach their children.  We are a Christian family, and we fall on the far religious left.  Using the Religious Exemption law we are not required to submit any information about our children.  We are not required to test our children or have any kind of evaluation.  By choosing the RE law we cannot receive any support services through the county school system.   That's fine with us.  We love the freedom we have with schooling under the RE law.  No testing, no deadlines, no interference.

If you have questions, email me  hannahshenanigans@gmail.com

Yep. I'm back!

Okay, I don't have any excuses other than I wasn't motivated.   And I'm not promising that I am motivated now either, but at least I'm breaking the ice!

We are all doing pretty well--months flying by, 7th grade completed, many many trips to fun places (Mexico, Key West, Beach, a friend's wedding, Camp PALS, the NDSC convention in D.C., a tour through New England...).   We've been home one weekend since the middle of April.   But now we're settling in with no real agenda until September.   It feels good!

Hannah's been doing well.  She's up to her usual funny stuff, cooking, joking, creating.

Here's Hannah's description of the picture:
The Fire Brigade is there to put out the fire in the volcano before it burns the Brachiosaurus while the Pterosaur escapes the poisonous steam.


When we were in Vermont (family reunion) we took a little trip up to the Ben and Jerry's factory!  It was a lot of fun. 

 These are HUGE tanks! Three storeys tall!

 This is the graveyard of ice cream flavors that were eliminated over the years.  

Hannah is playing the role of the ghastly host of the graveyard.

 This was my favorite.

We also had the chance to go to Haverhill, MA to visit the Hannah Duston statue. (Click to read the backstory)

She was really excited about this!  A dozen years ago my mom went to Haverhill and bought some Hannah Duston postcards and a t-shirt.   I remember Hannah being two years old, looking at the "Adult Large" T-shirt, having a hard time imagining Hannah ever being that big.  I stuffed the shirt in a ziplock bag and left it on the top shelf of her closet.  Look at her now!  She's wearing that very t-shirt (a bit baggy still), and at 5'4" she's definitely taller than the original Hannah Duston.  She's more than I ever could have fathomed--delightful, moody, sensitive, silly, thoughtful, frustrating, playful, ridiculous, funny, creative, loving, obstinate, crazy, goofy--it's a whole package.  I love that girl.