October 31, 2010

#30/31 Boo!

Well, I bet you were expecting Hannah to be Pippi Longstocking!  

Nope!  I was hoping for twin Pippis, but Hannah was not going for it.  

She wanted to be a clown.   She had a good time trick or treating with a couple of her Southern friends (that's Shea who is the witch!).   Unfortunately, this is about the best picture that I got.

Tomorrow we'll be at our science camp, and won't have any internet access for several days (wouldn't you expect scientists to have internet access???)   I'm one post shy of finishing all 31 posts.  I actually have the post ready to go; it's a guest blogger, and I needed her final OK to post it.  But my computer won't let me send email (even webmail!) if I'm using someone else's internet provider.  So it's going to be later in the week before I get it posted.  It will be worth the wait!

Thanks for reading all through October!  It was both fun and exhausting!  I'm much more of a 1-2x a week blogger.

#29/31 Dancin' with Nan

I'm'a gonna have to change my password or something--obviously someone has hijacked this blog!!  Clearly someone else besides me loves this Nanabird.

Did you know that the Cherokee people had seven clans?  We decided that Hannah would've been a member of the Bird Clan.

If there was Dance Clan, she'd opt for that one, she loves it so.

Visitors are welcome to the last five minutes of Hannah's dance class.  I take the opportunity to video the class so Hannah can review the music and movements. She's coming along, regularly a half-beat behind, but she's getting better.

This is a routine they've been working on for a few weeks. It's not yet complete. Hannah loves it because the music comes from Toy Story 3 and all the dancers are pretending to be toys/dolls.

Hannah is the one wearing all black except for a white waistband from her shorts. She's on the opposite side from where I was filming, so I mostly have her reflection in the mirror.

October 30, 2010

#28/31 Guest Post!

Hi everybody!

It's your friendly neighborhood Peace Corps Volunteer, Kate.  In answer to your question, Mom, I own this blog!  At least for today.

Ever since Mom asked me to do a guest post, I've been trying to think of what to write.  I don't really want to write about Jordan, because I get enough of that in my daily life (ha!).  So I decided to write about when Hannah was born.  I'm sure this story has been on the blog at least once before, but not from my perspective!

Hannah and me, ages 7 and 16

When Hannah was born, I was 9 1/2.  I was so excited when Mom told us she was pregnant, and argued with my brother for months about whether it would be a girl or boy (I won! He was so upset at the ultrasound...).  He also wanted to name her Guinevere.  Glad that got sorted out. 

When Mom went into labor on March 12th, I stayed up with Dad timing the contractions, until we got shipped off to a friend's house for the night.  Hannah was born at 12:51 AM on March 13th!  The next day, we went to the hospital with my grandparents.  I was pretty surprised--I hadn't seen a newborn baby before, so I had an image in my head that they came out all chubby and beautiful.  Not the case.  She was little, wrinkled, and red, and slept the whole time in her little swaddling hospital blanket--I couldn't even feel her through all that cloth!  After a while, we left to stay with friends.

Later that day, things went downhill for Hannah.  I later found out that they had taken Hannah away because she wasn't breathing correctly, and the doctor had come in and told my mom her baby had Down syndrome.  All I knew was that Hannah was in the hospital, and we couldn't see her. Mom and Dad didn't tell us she had Down syndrome.  I remember standing outside the glass door of the nursery (NICU?), and my mom pointing out which incubator was hers.  She looked like a giant, since all the other babies were preemies!  Over the next three weeks, Chris and I made signs to hang on her incubator, and visited the hospital with Mom and Dad.  I had no idea how serious Hannah's situation was.  I thought there was no doubt she'd get all better and come home.  I remember watching them move her incubator into an ambulance to take to a hospital more equipped to deal with her medical issues (pulmonary hypertension--high blood pressure in the lungs, which stayed with her in some degree until she was 2).  When I was considering this blog post, I wondered why my parents would take us to see that happen.  Now I realize they were worried it would be the last chance we would get to see our sister.

After she was moved to Carolina Medical Center (CMC), a nice NICU nurse snuck Chris and me in to see Hannah (parents only allowed).  It was crazy--Hannah went from a little raisin to a big grape, because of all the water she was retaining.  She had funny sunglasses to protect her from lights for her severe jaundice, and tons of tubes.  As we left, we walked through the pediatric unit, with jungle animals painted on the walls.  My dad made an offhand comment: "If Hannah has her heart surgery, this is where she'll stay."  I can picture clearly in my mind the glare my mom gave him.  I knew something was up.  On the drive home, just past the cement truck intersection (every time we drove past it, there was a cement truck!), Mom explained his comment.  She said that Hannah has a problem with her heart, and is going to need surgery.  Chris and I started crying. I asked, "What else is wrong with her?"  Then she said that Hannah has Down syndrome.  I said "NO!" and kept on crying.  I must have had some idea of what Down syndrome meant, otherwise I wouldn't have reacted, but I couldn't remember seeing anyone with it, though I know I must have.  Mom asked us what we thought Down syndrome meant, and I think I said something like "It means she'll be stupid."  I was so upset.  I don't think "devastated" would be too strong a word.  First, my little sister wasn't chubby and beautiful.  Then, she was in the hospital forever.  Now, she had Down syndrome, and had to have heart surgery.  Mom said she hadn't told us before because she wanted us to get to know and love Hannah before we knew she had Ds, so that it wouldn't matter to us.

Once Hannah came home, it didn't.  Mom dressed her in a starfish outfit, with a hat I hated, but she was still really cute.  She was a great baby.  When she smiled, she would open her mouth as wide as it could go, and we would kiss inside it.  We called them "moon smiles."  We met other babies and children who had Down syndrome, and started attending DSAC, the Down Syndrome Association of Charlotte.  Growing up, I always knew she had Down syndrome, but I never thought about it when I looked at her, or played with her, or she let me hold her (when she was a little older, she didn't want anyone but Mom touching her--Mom would hold her, and then we'd have to pretend it was Mom's hand rubbing her back, not mine!  Whenever she figured it out she was so mad.).  She was going to therapies, started crawling (with one butt cheek up in the air), started talking ("woof" meant "dog" at 9 months!), signing ("more!"), and reading sight words.

As she grew up, she was just Hannah.  Yes, I knew she had Down syndrome.  I knew she would have a tough time learning.  I knew other kids might make fun of her.  But she was still my sister.

As my mom said a while ago, I wouldn't take the Ds away from Hannah, if given the choice.  She is such a strong, beautiful, smart, independent young woman, and I know that without having to work harder for things that come easily to others, she wouldn't have the strength of character and mind that she does now (read: stubborn).  While I don't think she really gets what it means to have Down syndrome yet, when she does I hope I'll be there to explain what it was like for me when I learned she had Ds, and how it never stopped me from loving her, just made me love and want to protect her more.

at Easter Seals camp for kids with Ds and their families, last summer

If it weren't for Hannah, I wouldn't be halfway around the world teaching Special Education.  I wouldn't want to adopt children with Down syndrome.  I wouldn't call people out on using the R word (well, maybe I would.  But not as passionately).  She's the Baby Boo to my Sully.  The Nemo to my Dory.  The Murray to my Anthony (.....or Jeff).  I love her, and I love that she has Down syndrome.

at the DSGR Buddy Walk last year

October 29, 2010

#27.5/31 Honey, I Shrunk the Kid!

I heard grumbling all the way from Jordan telling me that my previous post didn't count for 31 for 21.    Hey!  Who owns this blog anyway??    Who is the Mamma?

But I do see her point.   So here are a few pictures of my 21st chromosome mutant to make up for the boring pre-trip post.  (Don't be hatin' for that mutant comment.  It's technically true, and I say it lovingly and humorously! And I love her mutation--she's adorable.)

On yesterday's southwesterly journey we took a midday break at the Greensboro Children's Museum.

Honey, I shrunk the kid!

In keeping with her new fascination with civil heroes, here are two of Hannah's latest career aspirations.

And if those don't work out, she's going to be on the pit crew for Lightnin' McQueen (or other race car, like Hot Wheels).

We hopped back in the car and made it to Flat Rock, NC without much trouble.

I have internet access here, but for some reason I cannot send emails.  Maybe that's a Comcast problem or some server glitch.   Don't think I'm ignoring you!

October 28, 2010

#27/31 Out of town, again!

So we're off on our next adventure!  Hopefully this will post as we head out the door at 8 a.m.   We're on our way to the North Carolina mountains.  We'll be staying in Flat Rock tonight.  Our good friends Chuck and Janet live there.   We met them when we were young parents--Kate was 2 months old--and James was stationed in San Francisco.    We lived in a tiny apartment in San Leandro, near Alameda.   Chuck and Janet took us under their wing as we were but poor, lost circus performers new parents lost on the West coast.  They've been cheering us onward, through many moves and trials.  They've been champions for Hannah since the day she was born.

Just about the time our family moved out of North Carolina, Chuck and Janet decided to move there!   We do get to see each other more than the 15 years we lived on opposite coasts.   And fortunately for us, they don't mind giving us room and board for a night while en route to the Museum of the Cherokee Indian.  

It's almost a 7 hour drive to Flat Rock.   Then another 90 minutes West to the museum (tomorrow).  Then another 3.5 hours East to my parents house in Tega Cay, SC.  We've packed videos, books on CD, a new coloring book and snacks.   Should keep us happily going!

I'll check in when I can...I have two guest bloggers chiming in soon, and I hope to squeeze in a Halloween post too!   I'll be home next Thursday night.

October 27, 2010

#26/31 Art

Hannah completed her art session at our local Homeschool resource center on Monday.   Miss Jennifer is a great teacher!  Hannah's been taking classes with her for over two years.   Usually I stick her in the 6-11 year old class, but she's outgrown it (physically); she doesn't really fit in.   This session Miss Jennifer offered a new class for advanced students. Over the course of eight weeks, the class would work on just two projects, one was pencil, and the other was acrylic on canvas.  The focus of the class was on color scale--from light to dark tones, shading, etc.   Now, I wouldn't ever intimate that Hannah is an advanced artist (yet), but it sounded like a class she'd enjoy.  And the age range was 10-15.  Perfect.  Jennifer and I chatted and she quickly said she absolutely would love to have Hannah in the class.

Everyone in the class did a similar drawing, with a ribbon through the fingers of their hand.    Then Jennifer connected each drawing and built a long accordion style book.

(click to enlarge)

Hannah really enjoyed this project!  (She managed to squeeze in a little bit of an electric guitar in hers too.)

Her second project was a little more challenging.  The teacher brought in a variety of glass bottles.  The students were to imagine something made out of them.   There was a charcoal sketch, and then a pencil outline on the canvas.   They had to pick one color and make a tone scale (light to dark). Her favorite color is red (like Murray Cook, the Red Wiggle, and like Lightning McQueen).

Hannah thought about a castle.   Here's her charcoal sketch:

And her final painting.   My favorite part is that little duck in the bottom right corner. (And that other creature is a pony, not a rodent. I think the thing that looks like draperies is a stall in a barn.  Not sure though.)

She was very happy with the class, and she's proud of her hard work.  She's looking forward to starting a new class in January.

#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.

October 26, 2010

Kate Update

A couple days ago was Kate's one-year anniversary in Jordan.    It's gone by quickly, and also s-l-o-w-l-y.   It's been less than three months since I was there, but it feels like I was there ages ago.

Kate has been having a challenging time in Jordan--everything is more difficult than it should be, and she's been frustrated with several situations.   But now that she's counted down her first year, she's got a new countdown--she just bought her tickets for a visit home!   She'll be coming home for a few weeks in late January!    We're so excited!   Three months until she's home! Can't wait!

#24/31 Quick Cookin' with Nan

More like, slipshod Cookin' with Nan....

Monster Toast!!

Get your bread.  White is best for this kind of toast.

Then make colored milk.  I picked red, blue and green.

Swirl the color around in the milk.

Then use a paint brush (we have ones specifically designated for food) and make a funny or scary face on the un-toasted bread.

You can paint both sides of the bread if you want.

Pop the bread in the toaster.  Don't make it dark toast or you won't see the monster faces!

The monsters are coming out of the toaster!!

Butter them up!

 And become a monster slayer!

October 25, 2010

#23/31 Running Away from Home (Me!)

So, I'm falling behind this 31 for 21 deal...and it's likely to get worse.  Hannah and I will soon be traveling for a week (Hello North and South Carolinas!).  So I'm officially petitioning for an extension of October so I can complete this challenge!

I ran away from home on Saturday.  I had a good weekend away with two Sisters of the Chromosome-hood, Wendy and Donna.    We had an overnight escape to a cottage on the York River, near historic Yorktown (of Revolutionary War fame).

We spent our time shopping, talking, eating, talking, mojito-ing, talking, sleeping and talking.   As it should be!

Donna and Wendy each have two daughters with Down syndrome.  Between them, they have one kindergartener and three 1st graders.  That's a whole lot of activity!  I know they needed the escape more than I did, especially since they each planned and executed a Buddy Walk in their town this month (and Wendy threw in a Golf Tournament as well for a good measure of insanity).

It was a wonderful time to share--without interruptions.

This extra-chromosome thing is really a sisterhood.  It's also a family tree.  Those of us who have a family member with Down syndrome really are connected genetically.   I don't know where I'd be without my extended Ds family.  Probably up the York River without a paddle.   Thanks, blogworld, for being part of my family!

Birthday Boy

Today Chris turns 20!   We couldn't be more proud of him.   He's mapping out his goals, and working hard to achieve them.

This weekend I got to stop in at William and Mary to bring him some birthday cheer.

Birthday muffins and Legos....what more could he want?  Oh, I know!  He could want to take the next level SCUBA certification class!  Make it so!

Happy Birthday Chris!  We love you!

October 22, 2010

#22/31 Another busy day....

And now, at 11:17, I am putting two girls to bed. Sleepover, please let everyone sleep!

I'm heading out of town tomorrow--hopefully I'll have a make-up post on Sunday--no internet on my Moms Escape Weekend!

Surprise! A face lift!

This might be a temporary interior decorating change, or I might get used to it.  I don't mind those little birds over there in the corner.  Nice touch for my Nanabird.  

It might even get me motivated to paint my bedroom.

On the other hand, if something isn't broken, don't fix it.  

We'll see.

October 21, 2010

# 21/31 Monica and David + Buddy Walk Total

Wow--when I typed in 21/31 I almost felt like I finished the marathon!    But, no.  I still have 10 more posts to go!

Tonight was my Monica and David movie party!   It didn't start out being a party, but I posted on Facebook that I had it recorded, so a bunch of friends who don't have HBO came over.  We had food and fun.   We paused the movie SO much--it took us an extra hour to watch it!  We all loved Monica.

I have lots of comments/thoughts about the movie, but I need to process first.   And since I've got 9 minutes left before midnight, I have to make this short!

Besides that fun, James came home with a big check from a donor who decided to match Hannah's Buddy Walk funds.   That brings Hannah's fundraising up to:  $ 1,890.00!!!   That is amazing to me.   I think the most she's raised in the past has been about $500.   So if anyone is looking for a good landscape company--check out ORC Grounds Management, Inc.  The owner, Dave, is a big community supporter; I'd love for locals to give him their business!  

October 20, 2010

#20/31 Piano Spy

I usually sit by Hannah when she practices piano.  Today I made her start her warm up exercises by herself.  I filmed her with the camera peeking around the doorway.

After she saw the video she said, "I don't have good piano posture."
At least she noticed the slouch I'm always trying to correct!

P.S.  New post for Lois.

October 19, 2010

#19/31 Dance!

It's Tuesday.   Hannah's favorite day.   She's busy getting her chores done so we can finish up her schoolwork.  She has a lot to do before we leave the house this afternoon.   But she's working hard.  And fast.  Motivation is a wonderful thing!

She has her theater class at 4:30.   That used to be her favorite activity.

But not any more.

Right after theater is over, she changes into her dance clothes.   She gets so excited!   Dance starts at 6:30, so we scurry to get some dinner out and get to the studio.

All of the girls in her class have had a year (or many more) years of dance.   The class is fast-paced for a beginner.   Her teacher has Hannah do everything the other dancers are doing, and helps her focus on learning some basic steps, but she doesn't expect any beginner to be able to do all the moves.

Hannah comes out of class feeling very successful.    She loves it.   Me too.

October 18, 2010

#18/31 Love You from the Heart of my Bottom

Yesterday Hannah had a really tough workout at her swim lesson.  She is finally able to swim a "legal" 25m of Butterfly.    I thought she was months away before being ready for competition.   Which would have been fine since Special Olympics doesn't start until late January.   But she got it all put together--and did about 4 laps of it!    It's not all that pretty, but she can meet all the requirements for the stroke.  Go Nanabird!

She was still in her wet bathing suit on our way home. She had some sports pants and a sweatshirt on (the pool is outdoors, and it's chilly!).  The plan was to hop right into the tub to soak off the chlorine.   She sat down on the little bench in the bathroom to change out of her wet things.   And when she got up, this is what was left:

And yes, she did say, "That heart is saying I love you mom, from the heart of my bottom."

October 17, 2010

#17/31 Harumph

Yesterday Hannah and I went to a local parade/festival.   It was your typical craft/funnel cake/inflatable bounce house festival.    The funds raised were to benefit a technical high school in the area.

It was a chilly morning (upper 40s), and I forgot to bring the collapsible chairs. The grass along the parade route was dewy.  No matter.  We sat on our reusable recycled plastic Trader Joe's grocery tote bags.

It was the s-l-o-w-e-s-t parade in the world.   It was home-towny in a town that is not so small.  Groups of Boy Scouts, Dance teams, church missions, and a clown or two thrown in for good measure.  There was one marching band, saved for the end (which was about 2.5 hours later).   It was rather disjointed.

But they were tossing candy to the child spectators, which Hannah liked very much.   Of course, she couldn't eat most of what they offered since she has braces.  She didn't mind.

About an hour in to the parade, following an Irish Dance troupe, a bunch of people wearing red shirts appeared. They had candy and stickers and flyers supporting the local Republican candidate for US Congress, Eric Cantor.   After receiving hand-delivered candy along with a glossy brochure of Mr. Cantor, Hannah wanted to know which of the parade-sters was Eric Cantor.   I wasn't expecting him to actually be there, but, ta-daa, as soon as I spoke those words, I saw him.  So I pointed him out as he worked the crowd, shaking hands with everyone.   He was coming our way.

Hannah was excited, thinking that he was a famous person (well, he is the Republican Whip).  She knew he worked in Washington DC.  Hannah is rather patriotic, and in her simplistic understanding of government, that meant that Mr Cantor, in her mind, ranked up there with Firefighters, Police Officers and Veterinarians.  That's pretty high in her books.   She put her "Cantor for Congress" sticker on her shirt.

Here he came!  He was shaking hands with the people right next to us!  He looked directly at Hannah who was waving and getting ready to say hi.  Then he looked directly into my eyes.  And then, without a smile, he silently turned and walked away.

She wasn't crestfallen.   She didn't have much invested in Mr. Cantor. He serves our country, he provided candy, and his people wore her favorite color, red.

I had even less invested in Mr. Cantor before this non-incident.
But he managed to further reduce any interest I might have had for him.

My interpretation is that Mr. Cantor was uncomfortable with my child who has a disability. It was a small slight, but one that was completely unnecessary.

And now I'm harumphing about it.

We lasted a bit longer watching the parade before heading over to where the craft stalls were.  Hannah had fun looking at all the items.  We came across one vendor who runs an art studio.  She had a collage-making station, so Hannah got right to work.

We also got to see the Da Capo display--the music school where Hannah has recently started taking private lessons.

She played some games-- mini-golf challenge, ring toss, etc--and won little prizes.  We watched some dancers perform on a stage.   Ate our fair food, and headed home.   It was a good way to spend half a Saturday.  I just wish I didn't have to witness a grown man being afraid to talk to my daughter.

October 16, 2010

#16/31 Movie time

I have been so good!  I DVR'd the Monica and David movie.   And I've avoided reading what people have been saying about it on Facebook.   I'm waiting to watch it until next week.  

On Thursday I will have eight or nine women coming over to watch it together.   People who are curious, some with a child with Down syndrome, and some without.  Some are homeschoolers, and some are not.

I'm looking forward to seeing the movie, and having a discussion afterwards.  And, of course, having dessert.

Don't be a spoiler!  You can tell me your opinions on Friday!

P.S.  Today is Lois' third birthday!  Go leave her a message on her blog!

October 15, 2010

#15/31 Cooking with Nan V

A couple days ago we didn't have much in the house for breakfast, so Hannah wanted to make some muffins.  She decided on cheese muffins (I was lobbying for biscuits, much faster).

As I was cutting and pasting this video to share with you, I was noticing how many fine motor skills are necessary for cooking and baking.   It's been six or seven years since Hannah had any occupational therapy, and I have no idea where she'd fall on a scale of fine motor tasks.  I'm pretty sure she'd be down in the 4-5 year old range (don't try to get her to cut a circle = fail).  But it doesn't matter.  She can function well enough.  Her movements are good enough to get the job done.  I'm not after finesse.  I just want her to be able to accomplish what she wants to accomplish.

This is a bit longer than I wanted to post, but I did want you to be able to hear and see Hannah--her successes (love that salt measuring), and her challenges (flour!).

Cheese Muffins

1 1/2 cups flour

1 1/2 T sugar

1 T baking powder

1/2 t. salt

3 cups shredded Colby and/or Jack cheese 
(we used cheddar, but jack is much better) 

1 C. milk

1 egg

1/4 C. melted butter

Combine the dry ingredients in a bowl.  Stir in grated cheese.

In another bowl, combine the wet ingredients; whisk well 
(I forgot that part, but it worked out fine--especially if the milk is room temperature--then the butter will stay melted)

Stir the liquid into the dry ingredients.

Measure into a WELL-GREASED muffin tin.
Bake at 375 for 20-25 minutes.
(These muffins like to stick to the pan, so grease liberally.)

#14.5/31 Addendum

Now that I've had a night to sleep, I still can't see yesterday clearly.   I am pretty sure that hormones (of the female type) were not directly guiding Hannah yesterday.   She is usually grumpy and mean when she is a few days away from the start of her cycle.  Yesterday she wasn't grumpy, and not particularly moody; we had that last week.    Yesterday she just didn't (or couldn't) listen.   My clue came while we were at the orthodontist in the afternoon.   She loves him.  But she didn't process much of what he said to her.  He asked her a couple of questions and she didn't even turn her head to listen to him.   I can understand her tuning ME out, but not Dr. B.  And he was telling a joke, one of her favorite things. A bad joke.  Her specialty.

I'm glad that I went back to the chair with her.  I had had enough of her by that time and was considering letting her go back for her adjustments by herself just so I could have a few minutes away from her in the waiting room.

So I'm leaning towards the theory that she wasn't intentionally disobedient, but that there was something that was clouding her processing.   By evening time, she seemed back to normal.   She had her first music class with a new teacher, improvisation and "singing".  She loved it.  In my earlier fury I had declared all media off limits for the entire day.  So she happily got out her fancy water colors and painted the evening away.  It was a nice way to end the day.

If she starts a cold in the next day or two, I'll know what was happening.  Otherwise, it will be one more unknown childrearing experience.  Thanks for your thoughts and support.  Getting feedback, knowing I'm not the only mean frustrated mommy out there is very helpful.

October 14, 2010

#14/31 Ugh

Most days are good.

Some are lousy.

It's not been an "on" day for Hannah.   She just isn't listening.  My interpretation is that she's ignoring me.  Which doesn't make me happy.   In fact, it makes me pretty angry.

I can get angry quickly, if I've got a reason to.  And yes, I overreact.  And I'm loud.

I'm sure I am scary to the one who receives my wrath.  Nobody likes to get yelled at.

And yelling doesn't really solve the problem.  But it sure feels good to be the yeller.

When I yell at Hannah, she gets quiet.   She will sort of try to fix whatever it is that she's messed up, or try todo what she's instructed to do.  But she will never, ever apologize.   At least, not in a reasonable time frame. I'm sure that tomorrow I will hear a heartfelt apology.   But that doesn't make things better today.   It's really frustrating.


Yes, I do get frustrated with Down syndrome.  Why can't Hannah understand something today when she understood it a few days ago?  Why does everything have to take sooooo long?   Why can't I be more patient?

I actually am pretty patient with her.  Of course, we both overdose on each other on occasion, with just the two of us together every weekday.

And now, I can't tell if Hannah's having trouble today because of some neuronal glitch caused by excess genetic material, or if she's just behaving like a typical adolescent.   Is there a real reason for her behavior today?  I mean, is there a physiological reason?  Or is it just a random adolescent mood swing that makes her unaware of any one else's existence.

Am I asking too much of her?  I don't think so.  When I say, "Take a quick shower" she usually gets right down to business.  Today she had two reminders to get out.  I was busy with other things and was ticked off when she was still wasting 25 minutes of water (we're on water restrictions in our county).  After that, she was careless with her laundry.  Not sorting correctly (she does know how to do it--she's been at it for 8 months), not using the right settings.    Then there were several other lapses. Nothing huge, just totally annoying.  I expect my children to respond to a question.  I expect my children to obey a command (the FIRST time).  Generally, my expectations are met. Today I'd give an instruction, and she obviously chose either a) to not listen  /or/ b) couldn't process the information.

Now that I've settled down some,  I think that the answer must be b.   And where does that leave us?  Stuck with a faulty main frame processor, with no means of servicing it.

And that is what frustrates me.  I don't want to "fix" her.  I don't think there's all that much "wrong" with her. I wouldn't know where to begin imagining what she'd be like without that volunteer chromosome (that one that grew without intent).  But that chromosome is inexplicable.  I wish it would give out an error message, telling me the status of the processing unit.  Is the WiFi slow today?  Are there too many tabs open?  Is she using Internet Explorer when she should be using Firefox or Chrome?

I know just a few days ago I wrote that I couldn't tell what is Down syndrome and what is Hannah.  And I still don't.  When I wrote that post, I was content with Down syndrome.   And now I'm frustrated with it.

It happens a couple times a year.   A little burnout on both of our parts.

And now, to not leave you in despair, here is a little story that happened yesterday.

At dinner, James asked her what she liked at school time today.   She couldn't remember a specific thing (retrieval of information is difficult--it's in there, but won't always come out of the mouth or pencil).  I prompted her with a few cues (Look at the other end of the table (where we lazily left out all our schoolwork)! Look for something red!   It's a c---).

Aha!  She said, "I liked using the count-you-later!"

I guess when you use a calculator you are really going to count those numbers later.

October 13, 2010

#13/31 Photography and Captions by Hannah

This is my Rescue Hero Command Center.  I bought it myself.

That's a BIG goldfish.

It's not Puddle.  But it is a Big Puddle.  
(Puddle is our baby painted turtle.)

My mom is silly in this picture.

I drew a picture of an airplane for my Dad when I was at the airport.

This is inside my Grandma and Grandpa's car.

My Daddy made a perfect smile so you can see him!

My mom planted a strawberry plant.  Can you believe it?  A strawberry in October!

Raspberries.  They taste yummy!

These are watermelons.

I like to make videos on my camera the most.