October 15, 2012

Spelling 10/15/12

One of Hannah's big challenges is spelling.  She can articulate all kinds of ideas.  She has terrific penmanship.  But she has a hard time with spelling.  So she doesn't do much unsupervised writing--she likes to dictate and have me write down her ideas.  Then I make her copy it.  She's making progress with spelling, slow and steady, and, umm...slow.

We've tried many spelling programs and techniques.  Some worked better than others, but basically, English is a bear to learn.   It's a really lousy language to spell (and read too!).   There are so many combinations of letters that make similar sounds, as well as unfathomable combinations ("eight"??).

Aside:  Did I ever tell you that Hannah always says "height" to rhyme with "weight" and "eight"?  It cracks me up.  "Hate".   It's so funny when she reads that word.

Back on track.

I learned this technique from a neurodevelopmentalist.   Our kids with Down syndrome have trouble with short-term memory.  So we need to input the information into the student more frequently than a typically developing student would need.  Input input input.   Output will come at some point.  If the student is not giving output yet, that means you have to keep on inputting!

We make a flash card of each spelling word.  It's important for Hannah to see the word clearly, without other words nearby to distract her.   When making a flashcard make sure none of the letters in the word touch each other.  This is REALLY important if your child is just starting to learn to spell.

My turn:  I hold the card.  I say the word.  I spell the word.
Hannah then while looking at the word, spells it.  Then I flip the card down, and she spells it again.

That's it.

When it is a new word, or a long word,  she might need a couple tries before she gets it right.   Sometimes on really difficult words Hannah chooses to finger spell the word as well. (sign language)  I think this is a smart move on her part--it gives her a physical way to remember it using her motor memory.  (motor memory= muscles remembering a pattern or behavior that doesn't necessarily involve language or short-term or long-term memory--it's not ideas, it's just what your body knows without thinking.  Sort of like typing.  You don't have to think about it, it just goes through your fingers.)

Sometimes a word is difficult and she gets letters mixed up or skipped.  When that happens, I usually try to make a sort of sing-song way of spelling the word or a rhythmic cadence with the letters. Or,  we'll tap out a rhythm as we recite the letters.

Sometimes she closes her eyes to recall what the word looks like.  She can get over a spelling glitch by visualize the word if she consistently transposes letters in a particular word.

We go through a set of 10-15 words each week.  Or two weeks, if we need the time.  I choose words from the Dolch list as well as words that she uses frequently in correspondence or just words she likes.

I don't ask her to write them until she can spell them out with her voice.   When she can speak them,  we add the pencil.   Once I know she can write them, I test her.  I don't test her until I know she can be relatively successful.  I know this isn't an option for kids in regular school, but I generally work on a "quit when you're still successful" principle.   If you push too hard, you'll end up grumpy,  same as your child.

Use a red or black sharpie for your flashcards



***WHOOPS!  I'm having trouble uploading my video. ***
*** Will add it as soon as I can get it edited!***

(Come back soon if you're interested in seeing how we spell.)


Sometimes we use letter tiles to build her spelling words.  Digging through the letters makes her really recall which letter she's after, in addition to working on alphabet skills.


This is a part of a spelling game (of which I am not fond).


Each tile has a few little pegs on the back.  Only the correct letter will fit in a specific block, so sometimes it's just trial and error.  The colors provide limited options, so that might be helpful for some students.    There are too many useless words--look at that picture at the top of the picture.  I think it's a faucet.  Somebody might say "sink".   But no.  It's "tap".  A good word to spell, but a horrible illustration.

We only use the letter tiles, not the spelling cards.   Don't ever feel bad about not using the instructions in a game or lesson.   Use what works for your student.


RANT:

What in the world do you think this is?



Neither Chris nor I could figure out what this picture was.  "Ice"?  No.  It's a 5-letter word. "Cubes"?  No.  "Tongs"?  Nope.

It's SUGAR.  Besides the bad picture, what a horrible spelling word!  Really?  Sugar?   This is coming from a beginner spelling "game"?     Ick.
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Epilogue:  Hannah picked out some of her spelling words for this week:
mansion,  genes,  haunted,  because,  science.    

Study them and you might discover a clue to our destination next week!




October 14, 2012

Chris is home!

It's fall break at William and Mary, so Chris is home for a few days!  It's always nice to see him, especially since he spent the summer in Williamsburg too.   He hasn't been at home for more than a few days here and there.   He's worked the past two summers in Williamsburg, so we only get him when:
     
       a.)  he has a school break
       b.) he needs something from home (Dr. appt, pots and pans, etc)
     
But, that's what we signed up for when we launch our kids: independence.  He's only 75 minutes away, so if we need a Chris fix we can go visit.   That's a lot easier than when we needed to go to Jordan to see Kate!   This is his last year of college.   At least, his last year at William and Mary...grad school applications will soon be sent out, and then we'll see where he lands!

His birthday is in a couple weeks, but we're pseudo-celebrating now since he'll be in classes on his actual day (and we'll be traveling).    Hannah has been enjoying "hanging out" with him.  He's very patient and silly, which are two very good skills to have with a sister like Hannah (or Kate....).




So here's to our 22 year old!  We love you Chris!


October 13, 2012

Going back in time...

Cheesin' with Daddy, age 4
Our family is not known for its organization.  Or, rather, most of our family is not very tidy.   One of us is very orderly, and he tries to survive in a family who values entropy.  Most of us also have amazing skills of procrastination.

We have a couple of decades worth of family photos.  All jumbled in series of shoe boxes.  All of them are from pre-digital age.   One of Hannah's favorite ways to spend time together is to pull out a box of photos and run through handfuls of pictures.   She loves pictures from she was little; shrieks of laughter emerge when she sees a ridiculous pose, or a satisfied sigh when she comes across a beautiful one.

Hannah has remarkable stamina and interest in the family pictures.  (means=the rest of us are sick of it)

But she's been in heaven lately because we're finally sorting out all the boxes and loosely organizing pictures by year.   Then they'll all be shipped out to be digitized and put somewhere in the cloud or hiding in a terabyte external hard drive.

Two year old bunny...
Mischievous and hungry two year old.  
One of my favorite pictures ever.  Fourth birthday!
It's a good time for us to take on this task. We have a month to get it all done.  Our formal dining table is COVERED with pictures.  With Thanksgiving coming up, we'll need a clean table for our turkey!



Disclaimer:  Kate and I spent a long time organizing these same boxes of pictures over a decade ago. We sorted them out along the perimeter of my bedroom.  We had almost finished when Hannah managed to sneak into my room. She made an ENORMOUS mess, shuffling all of the pictures into a mound.  We were so disheartened that we just put them into boxes where they've lived since.

October 12, 2012

NIH---10-12-12



Open heart surgery in 1965

I saw this picture on the wall in down a hallway at NIH today.   I have a childhood friend who was born with Down syndrome and needed heart surgery as a baby.  She was born in 1965.   I wonder what it was like back then.  I'm glad Hannah had her surgery when there was much higher success rate (though my friend had completely successful surgery).

NIH is a pretty big place.  The security was pretty tight! I wasn't expecting that. We had our car searched, and all our luggage and bags had to go through a scanner like in an airport.  The security guides were very friendly and kind to us.   I don't know if they are always that way, but I was suspicious.  Sure enough, one of the women had a nine year old grand-daughter with Down syndrome!

The admissions process was confusing and not very welcoming.  Our admissions officer must have been having a really bad day.  That's all I can say about that!

We met the researchers:  Dr. Nancy Lee and her assistant Elizabeth Adeyemi.   They were both warm and charming.   Hannah easily went into a little room to start her cognitive testing.  Meanwhile, James and I spent a couple of hours filling out questionnaires (8+ different surveys and assessments).  Through the door, we could hear Hannah giggling.

At lunch time NIH treated us to cafeteria food!  How about that?  It could have been worse, so we can't complain.

We had some free time.   This is how Hannah passed the time:

Thanks, iPad Face Goo.

After our lunch break we went to see the mock MRI.  Hannah had earlier expressed some concern about the MRI.   We explained that this was a fake one--it was just practice time so she could get used to it.    There would be a recording of the noise a real MRI would make.


We all put in ear plugs.  Hannah said, "Whew!  That's a relief!"   But she wasn't really relieved.  She was quite worried.

So I climbed on the "bed".


It wasn't bad at all.
But when it was Hannah's turn she was hemming and hawing.   She eventually convinced herself to get on the table.   We pushed in into the "tunnel" a little bit at a time.   She acclimated pretty well, though she wanted to talk the whole time.  I thought she'd have balked at the head "cage" thingy.   The "halo" had a little mirror.   When she actually does have the MRI she will be able to see a video of her choice on that mirror.   They will create MRI-safe glasses so she will be able to see the video!  How about that?   Hannah liked that idea quite a bit.


After the MRI practice there was more cognitive testing.   She lasted another hour or so, and then was burnt out.

It was a successful day.   We even got out of most of the DC traffic!

We'll go back in a few weeks to complete the study.  On the way home Hannah was singing made-up lyrics to go with the music she had on her iPad.    She sang, "I was so worried, but now I'm brave.  I don't mind an M-R-I.   I am fine.  I can do it and it's not ba-aa--aa-d."

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If you're interested in reading about Hannah's previous study for an Alzheimer's medication, you can look here:  Rivastigmine.

October 11, 2012

Route 95 10/11/12

So going to the Washington DC area just once this week wasn't enough...

James, Hannah and I hopped in the car after dinner and took another 2.5 hour drive north.   Our destination?  The National Institutes of Health.

If you've read much of this blog (even though I took a year-long sabbatical), you know that I/we believe in participating in research.  Hannah started her first research study when she was barely 3 days old.   It saved her life.   So we try to participate in every study that we're eligible.   We've done countless surveys as parents, the older kids have done questionnaires, Hannah's been poked, prodded, medicated, and measured in the name of science.  Down syndrome science.

This season's study is "Brain Imaging of Childhood Onset of Psychiatric Disorders, Endocrine Disorders and Healthy Controls".   The purpose of this study is to understand brain development during childhood and brain changes with aging.  They are looking for brain changes and development in healthy adults and children and in those with different developmental disorders.  There will be 6,000 subjects in this long term study!  Wow!  That's a lot of info!

Tomorrow we'll get checked in as an outpatient and Hannah will be poked and prodded and evaluated and tested (lots of cognitive testing--pencil/paper, computer testing, etc).  The appointment should last between 4-8 hours....

Then we go home.   Next Friday we come back up for a 45 minute MRI.  Hannah's never had one of those, so it should be interesting...

Now, don't think we're torturing Hannah.  She actually loves medical settings.  When she was little she was terrified of doctors and dentists.  We role played Doctor so much that for years she wanted to be a doctor when she grew up!  Hannah loves tests too.  We never test her at home.  She has not had any kind of therapy since she was 6 years old, so she likes to try to do all the things the researchers want her to do.    She doesn't mind getting blood drawn.  The only thing she's not fond of is an EKG.  She can't stand the electrode stickers.  When removing them it pulls her sensitive skin too much.  But she's compliant nonetheless.   Lots of years of "conditioning" as a child!   She's got a thirst for knowledge, so if we explain procedures in advance with factual information, she's on board.  

Just now, as she was brushing her teeth before bed she asked me if there would be a practice MRI tomorrow (yes, they have a "mock MRI" for practicing).  Clearly she's thinking about what we discussed a few weeks ago--and maybe she's slightly concerned since it's a new setting.  But she will go with the flow tomorrow--blood testing and all.

If you want to help our family members with Down syndrome, please consider participating in research.  It really can make a difference.
If you're interested in finding a research study in your area, take a peek at the NIH website or the listings on the NDSC site.

To learn more about Hannah's experience in this research, go here.




October 10, 2012

Day 10, Bizee Day Yesterday!

First up:  Wiggles=Success!



We had a good time at the concert.   Hannah was thrilled to go back in time and groove to the tunes, motions and all!


It was a very small venue--in the past we've always been in Coliseum/Arena kind of places.  This was a small stage, which made it more intimate.  And bustling.


Can you believe that Murray is 52 years old?   Hannah told me that he was "tired".   Then I had to explain what "retired" meant.  No doubt he is tired.  That man has wiggled way too much.


Anthony is the best--he's energetic and funny.   We were happy to see his digeridoo.  (Tom Chapin has a song about a digeridoo that is pretty cute if you want some good witty children's music.)


Our seats were in the middle of a row, so there wasn't much opportunity to catch the eye of any Wiggle.   But a little girl was afraid to deliver some roses for Dorothy, so Hannah offered to do it.


So here she is giving the roses to Jeff to bring them up on stage.  I couldn't see much of their interaction, but Hannah came back to her seat with a smile on her face and stars in her eyes---Jeff shook her hand!
 (Yes, it seems Jeff is planning on growing his hair long in retirement...)


Today she was busy telling people about the concert.  The one thing that really stayed in her mind was that there were the new Wiggles in the show too.  The three new ones were wearing shirts that said, "In Training".   


The Wiggles Chapter of our lives is over.  No need to visit again--honestly, the show was a bit forced, and not as good as previous ones.  Hannah still could find some magic, which is why we went.

Can you tell I'm worn out?   Yes.   It was a long day yesterday, and another one today (schooling, art class, guitar lesson, company for dinner--get this!  They brought us dinner!  And then we watched a movie together).  And the next three days will be even busier.  Hopefully I'll squeak out my posts!

But here's the real deal you're looking for--the shenanigans you're expecting:
(Sorry FB friends, you've already heard this NanTalk)



We were on the D.C. metro, heading into the city.   The first couple of stations were all on land, but then we started to descend underground.

Hannah: It's a time tunnel!!

A bit later we emerge to the surface.

Hannah:  See! It's 10 seconds later!  I told you it was a time tunnel.




Stinker.


October 9, 2012

Murray?

On this chilly and drizzly day Hannah and I are taking a day trip to Washington DC.  

We are going to pay homage to one of Hannah's childhood favorites:





Hannah LOVED Murray.  For a very long time.  

When she was young, we all had to role play.   Hannah was Murray, I was Greg, Kate and Chris alternatively were Jeff and Anthony, and James was Captain Feathersword.

It was really annoying.

We went to several concerts.   Each time, Murray walked up to Hannah and said hello.   It was magic.


So, if you didn't know, The Wiggles are retiring.   This is their Farewell Tour.   Made me nostalgic.   Hannah got a lot of joy from the Wiggles.  And lots of exercise (that's a lot of dancing!).  And she gained a thirst for guitars.  

Thanks, Murray, for giving my girl so much fun!