NIH...you worry me.

As most of you know, I am a research fanatic.  I love to read it, I love to participate, I love to move science forward.  I know the difference between correlation and causation.  I understand what a double blind study is.  I understand statistics. I understand the reason for a 13 year old to have to have a pregnancy test to reduce skewing the results.  I don't know EVERYTHING.  But I know enough.

Hannah is currently in the midst of a National Institutes of Health study on brain development (see here).   Hannah spent a day at NIH for preliminary cognitive testing and getting acclimated to the MRI.   We had a good day.  We have to go back again to complete the testing and have the real MRI.   It should have been done weeks ago, but there have been scheduling snafus.  Good thing too.

On November 17th we received a form letter from the NIH Medicolegal section of the Medical Record Department.  (I've blocked our address on these documents.)

Attached was a report on "Hannah's" physical exam and test results. 

We weren't expecting any 'reports' since the cognitive test results were not going to be released to us, and she didn't have the MRI.  Or did she?  Apparently, Dr. Giedd thought she did. "MRI scan of brain performed without complication on 10/12/2012"

In fact, there was only one factual thing on the report: Hannah had a urinalysis (to prove that she wasn't pregnant).   The rest of it was ENTIRELY FALSE.  False, or mistaken.

This is not what we expected from NIH.

Fortunately we met Dr. Maddox this summer at the NDSC conference in Washington D.C.  Dr. Maddox spoke about the new Down Syndrome registry (a much needed resource to streamline research).  Since she is the Deputy Director of the National Institute of Child Health and Human Development, she seemed to be a good person with whom to share our concern.

________________________________________________________

November 17, 2012

Dr. Yvonne Maddox

NICHD Deputy Director

National Institutes of Health

PO Box 3006

Rockville, MD 20847

Re: XX-XX-06-5  XXXXXX, Hannah Duston

Dear Dr. Maddox,                                                            

My husband and I met you this summer at the National Down Syndrome Congress convention.  We are very pleased with the progress of the DS registry which you described in your talk.

Our family is very interested in research for the sake of science; our daughter has been involved in many many research studies in the past 14 years.  The very first study actually saved her life when she was three days old!

Recently we agreed to have Hannah (age 14, DS) participate in the ongoing NIH clinical research study 89-M-0006 “Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and Healthy Controls”.  Dr. Jay N. Giedd is the principal Investigator.

We made our initial trip to NIH on October 11th, 2012.  We were met by Dr. Nancy Lee.  Dr. Lee and her assistant Elizabeth Adeyemi were very warm and helpful.  The day was filled with hours of cognitive testing, surveys and a mock MRI.   We were very impressed with how they introduced Hannah to the noisy MRI.  It was clear that they had taken many steps to make sure that Hannah had a successful learning experience and was comfortable in the “pretend” MRI.  No doubt this will ensure that Hannah will be prepared for the actual MRI later this month.  Our appointment is Friday, November 30th.

However, we have concerns.  Today we received a form letter from Amanda Thume, from the Medicolegal Section (Medical Record Department).  Included with her letter was a copy of a summary of the findings. 

We were VERY surprised to find the attached Medical Record, with progress notes by Dr. Giedd.  We never met him.  He has never seen or touched Hannah, nor did any other physician give her a physical examination, yet the record shows that there was a “Detailed exam” and that she has “Typical physical features of Down syndrome”.  Dr. Giedd also determined that Hannah is neurologically “normal”.  In addition, Dr. Giedd believes that Hannah already has had her MRI scan of her brain “without complication on 10/12/12”.

This is very disturbing for us.   We expected the NIH to have high standards, especially for a research study.  Imaginary records?   How is this possible?  Our faith in NIH is wavering.   Should we continue with the study?  Has it been corrupted?  

Any information you could provide to reassure us would be appreciated.

We are attaching a copy of the letter and the medical record for you to review.  

Thank you for your assistance,

Beth and James XXXXXX

XXXXXX@comcast.net

804-XXX-3060

cc: Dr. Nancy Lee

Dr. Jay Giedd

Dr. John Gallin

_________________________________________________

We sent off copies of everything to everyone.  The day we popped the letter in the mail we received a phone call postponing our next appointment.  We are now re-scheduled for early January.    

And then we forgot about it.

Until this morning.   The phone rang.  (I've been hesitant in answering the phone still being gun-shy from all those political calls--ARGH!!)    Caller ID said "PUB HLTH SVC".    So I answered.  It was Dr. Maddox  (SCORE: 1 for Beth!).  She was very concerned.  She just received the letter (I chose the wrong mailing address).   She wanted to get some clarification on the situation.  She wanted to get this resolved before we arrived tomorrow (the appointment that was re-scheduled to January).   Dr. Maddox was worried that the appt. was canceled because the researchers were trying to cover-up the problem.  I assured her that it wasn't the case.  She said all the right things and asked all the right questions.  Did I have any ideas that could explain the situation? (error, sinister plot?)  She was glad that she had time to investigate.   

I find it difficult to believe that none of the other three letters arrived until today.  Really?  I know that at least two have offices in the same building.  I have the address from the letterhead from research correspondence.   

Dr. Maddox obviously rattled some cages.   This afternoon I received a call from Dr. Lee (who really had nothing to do with any of this).  She was really surprised.   We talked about it, and her theory is that it must be a clerical error.   The error must have been made by Dr. Giedd (pronounced ghee-ed).

Dr. Giedd called next.   He groveled a bit, and admitted that it most likely was him.  He somehow put someone else's record in Hannah's record.   He also never knew that medical records actually sent the records out to doctors and patients.  I wonder how long he's been working at NIH....either WAY too long, or he's brand new.   Or, it was just a plain old human error.  He did apologize.  He was more human than I was expecting.

It's amazing how easy it is to make a mistake.  This one wasn't a big thing--at least in terms of direct  impact on Hannah's health.  Hannah wasn't so lucky when a Rite-Aid pharmacist made a pharmaceutical error after Nan's Tonsillectomy.   She had a torturous and prolonged recovery since she basically had no pain relief for days post-op.

I know, people are people. I make mistakes, and I always hope for forgiveness.  I'm glad that this NIH drama was only a "mistake".  It could have been a system issue.  Or something else.

So that's that.  I think I have NIH back in order.   Maybe they'll give me free valet parking in January.  Oh.  Wait.  Valet parking is free for everyone.

Things about Hannah, by Hannah

*Last month I started a list of "21 Things About Hannah".  We were finishing dinner, and I started the list with "Loves baked potato skins" after she stole my empty potato skins.     We all talked over a few other items.   Then Hannah joined in.   She was spitting them out as fast as I could write.

Here is the unabridged list directly from her mouth:

1. Love having "Hannah and Daddy Days" on Saturdays going to Glory Days for lunch and running errands.

2. Cheerful chore girl.  Helpful and kind.

3. Love dogs

4. Champion pill swallower

5. Love to go to museums

6. Love love love live stage performances to watch and to be in them

7.Traveller--far away trips

8. When I am sick I always spray the nasal spray up my nose to clear it out.

9. I'm learning to type.

10. I like rainy days when I can stay in my 'jammas.

11.We love our pets

12. I love going to the movies.  I eat popcorn and drink coke.

13. Chocolate is my favorite candy.

14. When I grow up I'm going to be a firefighter and paleontologist.

15. My dad was in the Navy a long time ago.

16. I love to look at our boxes of family pictures

17. I have 11 cousins.  I love to play silly games with them.

18. My favorite song is Defying Gravity.

19. I like to learn about places in the world and ancient times.

20.  Volcanos.

21.  I'm excited about going to Disney World!

22. I am going to try the Haunted Mansion.

23.  My favorite board game is "Life".

24. My mom is a good cook and baker.  Also she loves turtles--all types of turtles.  Proganochelys is a turtle in dinosaur times.  It had 60 bony plates on its back.  It didn't have a retractable head.
(yup, she really said that!  and I had to look up how to spell 'Proganochelys')

25. I love toys--especially Webkinz, Legos, American Girl dolls, Toy Story toys and Rescue Heroes.


Which one is your favorite?  Mine is #8.  It cracks me.

Nan Talk: Bee Witch

On Sunday we attended a Halloween party which had been postponed courtesy of Sandy. Hannah's witch costume is kinda itchy, so she chose to wear leggings and a long-sleeved shirt underneath.  It's a bit unruly--long skirt, high collar, hat...

So she chose to use last year's bee costume so she could be comfortable while playing games and decorating pumpkins.  

There was a professional children's performer who had everyone singing and dancing. It was so funny to watch Hannah inch her way up to the front so she could be on the "stage".  The girl loves the limelight.

After that fun, we had a catered dinner. It was a great treat! Every family brought a dessert. Hannah picked these guys for our contribution (she found them in an American Girl magazine).

So sweet.  Literally.

After we gorged ourselves, it was Trunk or Treat.   Hannah switched into her witch costume for hauling the loot!   She also offered a rendition of "Defying Gravity" to her fans, with musical accompaniment courtesy of the Prius.

 

Of course, someone mentioned that they thought she was a bee.   

Without missing a beat, she said, "I was "Bee-witched!"

Crack me.

(that's what Hannah used to say when she was little--she never added the "up".)

Stolen from Facebook

This evening, while I was in bed with a headache, Kate was on Hannah patrol.   Here's her Facebook status:

Hannah is watching TV, picking a show On Demand. She finds one, but the picture is a little choppy.

Hannah: "Meh. Didn't work."

Kate: "No, it's playing!"

Hannah: "I know, but it's pixelated."


Ha!  Vocabulary wins!

Defying Gravity!! 31/31

I know I owe you one more post, but I know you're a forgiving lot.  Hannah and I are working on a post together, and we promise to get it up soon.

Today was a fun day!

We started with Pumpkin carving:

Hannah's punkin' skillz have improved in the past year!  I guess this is one way to assess fine motor proficiency.

But then we were interrupted with a gas leak in the attic (one of the furnaces is up there).  The Gasman helped me fix it up!  Free!  Yay!!!

So we continued on....Hannah did all the straight lines and I tidied up the details. Hannah really liked this Great Horned Owl.

Soooo...I forgot to tell Hannah to change our Jack O'Lantern's name.
She named him Horny.
Of course, that was the first thing out of her mouth when she walked into her art class this afternoon...

Way to go, Mom!

We scurried off to guitar lessons--Hannah's making progress!  Slow and steady, but she's picking up the tempo.   Soon we'll be able to give you a video of the rockin' Bird!

Quick dinner and out the door for trick or treats!

Hannah is Elphaba.  If you don't know who that is, Elphaba is the real name of the Witch of the West in the Broadway show "Wicked".

She's singing "Defying Gravity", her favorite song.

Here she's playing the part of the Wicked Witch of the West in the Wizard of Oz.  

She'll get your little dog, too! 

Watch out Dorothy!!!

A satisfied candy hoarder is now watching TV and consuming as much as she can.  Then the rest of us can forage when she goes to bed.

Jeanne #30/31

When I was eight years old, our family moved.   My Dad had been chaplain at a small Lutheran college in East Orange, NJ, and he took a call to be a pastor at a church in Dunellen, NJ.   Our new house was a parsonage, owned by the church.

The day after the movers unloaded the truck, we were all busily moving boxes from one place to another as we unpacked.  The front door was wide open as we trekked back and forth from car to garage to house.   I vaguely remember being surprised by finding a little girl walking upstairs in our house.   She was short, had straight black hair, cut in a pageboy style.  It was 1972.

This little girl was Jeanne. She lived in the house across the street with her 3 brothers and 1 sister.   She was seven years old.  And she had Down syndrome.

I. loved. her.

We spent hours and hours playing.  She was thrown into the busy neighborhood games of tag, kickball and Ghost in the Graveyard.  She'd come over to play and I'd teach her how to play Go Fish.  We'd play in the sand box. We'd bake brownies together. She came to all my birthday parties.

We never argued.  No middle school drama with Jeanne.  She was one of my very best-loved friends.

Linda, Jeanne's older sister, was my age.  I remember Linda being proud that Jeanne was in the "Educable" class at her segregated school.  She told me about the differences between "educable" and "trainable".  This was in the early days of public school providing any sort of education for children with cognitive disabilities.

Our neighborhood was amazing. So many children, every one accepted Jeanne--looking out for her, including her in our games, running through the sprinkler, climbing trees...

Guessing this was about my 13th birthday party.  Jeanne was about 11.

When Hannah was born, my mother said that all she could think of was the hours and hours I spent teaching and playing with Jeanne.

I remember her shoelace patterned scars on her legs and arms, where surgeons had taken veins or tissue to repair her heart defect when she was a baby.   It brought me great comfort to think about Jeanne when I learned that Hannah would need similar surgery.  Her surgery in 1965 or 1966 must have been much more risky than when Hannah had hers in 2000.

We moved to Pennsylvania when I was 15.  I don't think I saw Jeanne again.   While I didn't see her, I thought of her frequently.  As a teenager, I worked at a day camp for children with disabilities.   I always kept my eyes open for people with Down syndrome.  When I went to college, I considered becoming a Special Ed teacher. (I took a 100 level Education class and lasted about two weeks before I transferred out.  Clearly at age 18 I knew I couldn't follow all the rules that teachers have to learn. Ha!)

I majored in Psychology.  I learned quite a bit of child development, including "abnormal" psychology. I was much more interested in cognitive psychology than clinical or counseling psych.  I also focused on animal behavior--the hows and whys of behavior of wild and domesticated animals, particularly non-human primates.  (This is why at an early age my children learned the easiest way to sort out  monkeys and apes:  apes do not have tails.)

I graduated from college, and followed my heart--giving up the possibility of a position in Puerto Rico studying a tribe of Rhesus monkeys that live on a nearby island.  Instead, I got married, and started a family.

I still held my memories of Jeanne.  I always thought I'd adopt a child with Down syndrome.  James had never had any experience with anybody with a disability--physical or intellectual.   When we decided to add to our family of four, we talked about adopting a child.  In the spring of 1997 we filled out some forms for the state about the kind of child we would accept.  A few weeks later we received a reply saying they had no children that met our criteria at that time.   The very next day I took a pregnancy test.  It was positive.

Fast forward:  Hannah was born.  Six hours later, a doctor suggested that Hannah might have Down syndrome.

How about that?   In retrospect, it's pretty fabulous!  

Who has a love/hate relationship with Facebook?                 Me.

Some of the very best things can start with Facebook.   I reconnected with my childhood friends.  Karen, Kathy, Suzanne, Rosemary....and Linda.   And I got to hear about Jeanne!   She's living in a group home in New Jersey.  Linda is her guardian.

Remember that summer trip to Vermont?  On our return trip south, Hannah and I made a pit stop to see my old neighborhood friends in New Jersey.  Including....

JEANNE!!!

I was amazed.  She has a memory like no other!  Her speech was far better than I ever expected.  She has friends and activities, and she's still hilariously fun!

We spent the afternoon together, with a cookout, swimming in the pool, catching up on 33 years.  

Hannah, Rosemary, Me, Karen, Kathy, Linda (Jeanne was in the hot tub!)

Since Linda became Jeanne's guardian, she's been on a sharp learning curve.  It was great to learn from her, and for me to share information too.   I told Jeanne that I was SO GLAD that I knew her.  I am different because she was in my life.  I never once used the word "Retarded" in a derogatory way.  I always respected people who were different from me.   Jeanne changed me.  She made me better.

I think that everyone is made better by having interesting, loving, funny, caring, genuine people.   That's some of the best of having a person with Down syndrome in my life.  Lots and lots of people with Down syndrome.

Full circle.

Love Love Love Love Love Love Love Love Love Love Love Love Love Love

DS Clinics? Doctors?

Earlier this month someone left a comment asking about Down Syndrome Clinics (Hi Anna!).   I have to say that we've never been to one.

When Hannah was born and recovered from her critical medical issues, we were sent home with a long list of "follow up" appointments to make.   One of them was the geneticist.  We had briefly met with him earlier in the hall of the NICU when he gave us the official diagnosis, but we didn't know why we needed to see him again.   We felt like once we got the diagnosis, there wasn't much else a geneticist could do, right?

Right.   It was waste of our time and money.   I have friends who LOVE their geneticists.  I'm not anti-geneticists.   I don't know what they could offer us.  I recall asking some DS parents about the Down Syndrome Clinic in Charlotte, NC (where we lived at the time).  They said it was mostly for adults with DS.  So I dismissed it.  I liked the idea of one-stop-shopping, but since the clinic focused on adults, I moved on.  We had a decent pediatrician.  We ditched the county "services" early on.  All they could do was put us on a waiting list for a Physical Therapy Assistant, and we'd have to pay for it.  That wasn't our idea of "Early Intervention".  So we found a local high quality therapy practice.   All the therapists were trained in Neuro-Developmental Treatment and worked as a team (an EXCELLENT approach!).  We had to pay for it, but it was our choice.

Physical Therapy began when Hannah was about 3 months old, once a week, with homework. When she was almost a year old we added Speech and Occupational Therapy.   We dropped PT when Nan was about 3 years old.  We kept up with Speech and OT for a couple more years.  (We also had a little bit of time with the school system therapists, but we dropped that soon after.)  Since then, she's not had any therapy.

Early on Hannah saw an ophthalmologist, a pulmonologist (frequent pneumonia in her early years) and a cardiologist (still does).  But most every need was met by our pediatrician.  I think that if I didn't have a decent pediatrician we would have pushed to find another way to meet Hannah's medical and developmental needs.

I've researched Down Syndrome Clinics--some are REALLY REALLY good!  Who wouldn't want to see Dr. Skotko in Boston, or Lutheran General Hospital's clinic in Illinois?  But some are mediocre.  I know a family who went to the clinic in Charlottesville, VA (Kluge Children's Rehab) and they came home with an incorrect dual diagnosis of Autism.   Totally WRONG.

Our family had time to gradually ease in to Hannah's needs.   We didn't have a prenatal diagnosis, but we did have access to the internet and good information.   We didn't need to start everything immediately.    I have friends who have adopted a child(ren) with Down syndrome.   It's got to more difficult to jump into the middle of everything.  I'd definitely go to a DS Clinic.  It takes time to figure out what kinds of things you need to look for--things other than therapies.   Endocrinology, Cardiology, Gastroenterology, Otolaryngology, Neurology (apnea?), Ophthalmology...Psychology?   Unless you already had experience with Down syndrome, it would be overwhelming to figure out what some basic questions would be.  A DS clinic would be a great place to start you wouldn't need eight separate appointments.  Knock them all out in one day.  At least the physicians and clinicians actual have an interest in and experience with the DS population.  And hopefully they'll be superlative.  They certainly couldn't be worse than the doctor you'd find through the list your insurance provides.

It's also very difficult to find a general pediatrician who will actually:  
a.) Listen to you and do what you say  ("We need these blood tests.")
b.) Have actual accurate knowledge and experience in Down syndrome or be willing to learn
c.) All of the above.

I research Down syndrome. A LOT.   I expect to be respected as a parent and a participant in my daughter's health issues.  If a doctor will not value me as an equal partner, he or she will not be my daughter's doctor.   We have to be a team.

Age 10 with her ENT

After thought: Another option is to find a really good developmental pediatrician.   We've never been to one, but many families really love the positive encouragement from a DP.  Might be a middle-of-the-road solution for those who don't have a clinic nearby.  (BTW, we don't have a clinic in our area.)

The Game of Life 28/31

We've had a really lazy day (well, at least, Hannah and I did).   I stayed in my jammies until 2:30.  I read my book club book (The Language of Flowers by Diffentbaugh).  I really enjoyed it, even if some of the plot was predictable.   Hannah watched some TV, then did some art/coloring while listening to music.

Since she used up her "screen time" in the morning, she decided that we should have a Family Game Night later on.   Kate would be home and maybe all four of us could play Life.

Daddy couldn't play since he had business calls since he's a property manager and has buildings all up the East coast.  Sandy is causing trouble....

But the three girls had a good time.

Hannah brought out some treats...spooky lollipops from the Haunted Mansion!

Hannah had Madame Leota (the woman in the crystal ball) and Kate had a spiderweb.

Both Kate and I were really impressed with Hannah's money handling!  It's one thing to count out by fives or tens, but she had to do a combination of 5's, 10's, 20's, 50's, 100's (all in Thousands!).   In her schoolwork we've been polishing up counting coins (a never ending task).  She knows them pretty well.  She can give any exact amount of cents using a combination of coins.  But with our real money we don't have a twenty-cent coin.  And 50-cent coins are not very common.  So she had to figure out how to create $35,000 or $75,000 or $15,000 with the pretend dollar notes she had.  It was tricky, but she did it perfectly!

Even with her good banking skills, she didn't win.  I did!  Yay me!  Millionaire Acres, here I come!

Trouble in my Blogging World

So sorry for no post last night.   Hannah and I were working on her guest post when Picasa/Google decided to throw in a monkey wrench.   We'll work on a solution, but last night at 11p.m. wasn't the time to think clearly!

We are home safely--the trip was great!   We haven't heard anything much about the Haunted Mansion, so I think Nan's thirst has been quenched.  We all feel a bit relieved now.

Today we made a pit stop on our way to the Orlando Airport...

Did you know that when Hannah was 5 years old she wanted to be a dentist?

She didn't think this 'gator was all that cuddly....

Glad to be home sweet home.   It looks like Sandy is not going to make a very long visit here in Virginia, and for that we are very glad.  Of course, it would be great if the hurricane stayed out to sea entirely.   Stay safe everyone!

SeaWorld 25/31

Another quick post...

We had a good day at SeaWorld.  I think it's more our pace, less crowded, more like a zoo than an extravaganza.  

Shamu was there to greet us:

The first show we saw was lots of fun--ducks, doves, cats, dogs, and pigs, all trained in ridiculous tricks!

We followed up with the Clyde and Seamore show (sea lions and otters!), and later, the dolphin show.   It was good to have all this sitting down since we were pretty worn out from yesterday!

Hannah,  hoping to catch a ride...

Somewhere along the way, we were looking at some aquatic birds.  Ducks were scurrying around the feeding dishes.   Nan says:
"They are busy bee--ks."

We did get rained out before we could see Shamu in action, but we didn't mind.  A nice quiet evening at the hotel gave us all some recoup time.

Snippets of Disney 24/31

Exhaustion, but I can't leave you in the lurch!

Here are the highlights so far:

Last night, flew into Orlando, an hour late.
At touchdown, she says, "We Orlanded!"

We slept well enough--up and out to the Magic Kingdom.   It was raining, but it stopped by the time we got to the parking lot.  The Haunted Mansion was on everyone's mind.   As we boarded the Monorail Hannah turned to me and whispered, "I'm going to be face to face with a cloaked figure!!!"

We scurried over to Liberty Square to get in line for the Haunted Mansion--about 9:30.   There were just a few people headed that way.  We got the disability pass, but we didn't really need it then--no line whatsoever.

A Spooky Nan!

We wandered around the "cemetery", and then she donned her headphones and got down to business.   I was so proud of her.  She didn't seem to be very nervous, but I knew this was a big accomplishment--eight years of build up is a long time to hold onto a mysterious something.

We flashed our disability pass as we boarded our DoomBuggy (all three of us crammed in there!).  We asked if we could stay on the ride if Hannah wanted to go around again.  "Sure!  As long as you want!".  

She loved it.   She wanted to do it again.   And again.  (The Mansion exiting host mentioned that the record number of rides by one person in a day was 60.  This did not console us as we went around five consecutive times!)

One happy girl!

It was great!   We didn't hear a single word about the Haunted Mansion for the rest of the day.  That is, until I mentioned that we could go back for one last ride before we left the park.  Yup, she definitely wanted to go again.

We had a great day--worn out from fun!  Six rides on the Haunted Mansion!

And guess what?  Some friends of ours happened to be at Disney today too!   Lois's family was there (see link above left).

P.S.  Lois is going to have another little brother!  They are expecting in early 2013!!   Exciting?  Yes!!!!

Away we go!

When Hannah was about five or six she had a Disney Sing-Along-Songs video about going to Disneyland.   She loved all of the songs except one:  Grim Grinning Ghosts.  The Goofy and Donald characters were covered with sheets pretending to be ghosts.  They sang and danced in front of the Haunted Mansion.  She was terrified, even though the song was silly and playful.

I'm sure you know the definition of perseverance.  But are you familiar with the word "perseveration"?

per·sev·er·a·tion    (From the FreeDictionary)

n.

1. Uncontrollable repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.

2. The tendency to continue or repeat an act or activity after the cessation of the original stimulus.

Perseveration is frequently found in the OCD and Autism populations--an individual may become fixated on one topic and will not let it go.  It could be a focus on weather or washing machines, or computers...usually things that people generally don't want to hear about for great lengths of time.

Hannah doesn't have autism, but she has been quite absorbed with the Haunted Mansion for at least eight years. It's been a love/hate relationship.

She has read everything she can find about how the Haunted Mansion was created, how big it is, how scary it is, how many ghosts live there (she doesn't believe in ghosts), how the robots and trick movie projections are made....and on and on.  She's looked at numerous YouTube snippets of home movies of the Haunted Mansion (both DisneyLand and DisneyWorld), official advertising clips of the Haunted Mansion....and, well, you get the idea...

It's not a daily thing.  It's not even a weekly thing.   But we're tired of hearing about the Haunted Mansion.

The other week when Hannah was going through the NIH cognitive testing, one of the words was "mansion".  She had to define it.   She did a good job.   And then she went on....and on...and on...

The researcher was impressed, enough so to mention it during a break.  Dr. Lee said she quickly understood that Hannah was talking about one specific mansion...one with four columns, a creaky front porch...with tombstones in the yard....

This is a collector's edition of an out-of-date magazine which Hannah
 bought in San Francisco at the Disney Family Museum last year.

She knows the original concept plans for the DisneyLand Haunted Mansion and how the plans evolved into the actual ride.  She knows that the front of the Haunted Mansion is just a facade, that there is a warehouse behind it, covered with plants and spooky looking walls so nobody can see the warehouse which houses the ride.

She has a CD copy of Ron Howard in an audiotape of "The Story and Song From The Haunted Mansion"   recorded in 1969.  She can recite the entire story and song, complete with sound effects.

Hannah acting out the Haunted Mansion story on vacation in Mexico...

When we went to DisneyWorld 4+years ago we discussed actually going IN the Haunted Mansion.   She would have no part in that idea.   She didn't have the chance to change her mind because we were only there for half a day before she spend the rest of her time in the hospital with a stomach bug.

But now, she's ready.  She has a plan.  She's going to wear her noise-muffling ear phones.  She will take them off if she wants to.  She can close her eyes if she's too scared.  She'll be sitting right between her mom and dad.

Our plan is to get this over.   We're going to go around and around on that ride as long as it takes her to get her fill.  It's our primary destination.   We'll be taking tons of pictures and video so she can relive it.   And maybe, just maybe, we'll burn her out.  Keep your fingers crossed!

This evening we fly down to Florida.  Wish her luck!

Life Imitating Art 22/31

Hannah loves our local art museum.  It's the Virginia Museum of Fine Arts in Richmond.  It's free!   They just installed a traveling exhibit by Dale Chihuly.  We'll have to go back to see that when we have time to ooh and ahhh.

We only had an hour to kill, so we wandered around.    We found ourselves looking at the Ancient Egyptian art,  Ancient Chinese, and then, surprisingly, ended up at "British Sporting".   We always like the bronze statues of farm animals.

As it turns out, our dog Hazel has several nickname.  Basil.  The Cow.  Hazeltine.  (and a few I'm not allowed to use)

The pig sculptor's name is Haseltine.

Here is life imitating art.

And again.

This bull actually looks a bit like Hazel.

Wherever we go, Hannah finds a way to have fun.   The museum guard even mentioned noticed that!

iPad addiction 21/31

So....yesterday's post was a positive one which was brought to you by the courtesy of Hannah's iPad.    But yesterday afternoon, Hannah sneaked her iPad into her room while she was supposed to be cleaning her room.  We try to limit Hannah's screen time, though we are more lax with it than we were with her siblings.  But we REALLY don't like her sequestering herself in her room watching shows on Netflix on the iPad .   Of course, the shows she watches are really fine--nothing scary or violent.  She still seems to enjoy shows for younger children or nature shows.

When I caught her lounging on her bed I told her she needed to turn it off and do something else, and reminded her of the ask-before-doing rule. She agreed that it would be good to go outside to play (she had cleaned her room--that's never a problem, which I don't understand at all--I HATED cleaning my room.  Still don't like it.).

This morning I went into her room to wake her, but she was already awake with her iPad--trying to hide it from me.   So I took it away.   I reiterated the constant rule:  Ask to bring the iPad into your room, just the same as how as you ask to watch TV or use the computer.

She was sheepish.

We went off to church, the Art Museum, and Brunch.  As we arrived home, Hannah asked if she could have her iPad.         NO.

I knew she was mad.   She doesn't usually get angry--she does get frustrated, irritated or annoyed, but we rarely see her getting mad.   I'm always glad when she gets mad.  It means she's got the full gamut of emotions.  It's good for her to react.  I want her to own her feelings and figure out what kinds of responses are appropriate.

It took her a few minutes to make some noise.   I was in my room changing into lazy clothes when I heard her loud sobbing in the hall.  Kate was there, listening to her, talking about what happened.  I told Hannah that I understood that she was upset because she couldn't have her iPad.  She had two choices:

1. Get some tissues and blow her nose and think of something else she could do.

or 

2.  Keep crying, but do it in her room so we wouldn't have to listen to her.

She stomped down the hall and slammed her bedroom door.

It made me happy.  A typical sullen teenager.  I've had those before, and am grateful that I've got another one.


Tomorrow she'll get some iPad privileges back, but most likely there won't be a Netflix app on it anymore.

Back in Time

Hannah loves her iPad.  She's gone through tons of apps and games, learned all kinds of things (frog dissection app?), has access to Facebook (yes, she's on Facebook!) and email.  But one of her favorite things is the camera. She loves to use the crazy camera features.   She loves to take videos of herself and her friends.  We regularly have to delete most of the pictures or videos (she doesn't seem to notice).

Back in March she saw a new kids' TV show called "Dinosaur Train".   She really liked it.  It's made for preschoolers, but she didn't know much about dinosaurs, so it was interesting to her.    We got dinosaur books from the library, and dinosaur toys.

We were surprised when we discovered this video she made!   She took the part of the narrator, and had her toys do the action.  When you watch it, you'll see Hannah look over to the side.  That's because she's looking at the iPad screen to see what she looks like in the picture (the camera is to her left side of the iPad).

I've added some text to help you understand some of the tricky parts.    It's long, but pretty entertaining...You can get a real feel for her imagination.

No problemo !!

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

Hannah's Extreme Bedroom Makeover

When Hannah went off to Camp Pals this summer I decided to update her room.  It wasn't totally a surprise--I didn't want her to freak out when she returned!   She helped me choose which toys to keep, which ones should go on vacation to the attic, and which ones should go to kids who need more toys.   I was surprised that she gave away so many things!  I am not a great role model when it comes to letting MY things go, but apparently Hannah hasn't noticed that.

Hannah picked out her new bedding, but I picked the surprise theme (Rock and Roll).  

As it turned out, I only had three days to get the room finished, and I almost made it.   The finishing touch arrived too late to apply to the wall, but she didn't mind.

Here's the Big Reveal!

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

Adaptive sports "Buddies"?

Hannah has had her share of adaptive sports teams.   We've done Challenger Softball,  Miracle League, TopSoccer and Adaptive Dance in various towns.

While she somewhat enjoyed it, the programs seemed to be a bit flat.   There were some "helpers" who attended the entire season, but most of the volunteers would just come once or twice.  When Hannah was little, she wasn't going to latch on to a stranger.  She wasn't interested in a teenager who was there for the community service hours.   She did best when she had consistent volunteers who were around enough to build a relationship.

Still, even when the volunteers were top notch, they were way too nice.   Really, is it a good plan to let Hannah think she can make 15 goals in a row while the volunteer is faking missing the ball?  She doesn't need false success.  She needs skills.  She needs reality.  She definitely doesn't need more ego.   She has the highest self-esteem of anyone I know!  

It's not just volunteers...frequently it's parents who over-praise.

Superficial success is just ego stroking.  It doesn't teach anything of value.   Instead, provide realistic feedback.  Describe what you see: "I saw you running quickly to try to catch that ball." , "That was interesting!", "You were smiling out there."   Hold back on the "attagirl" comments.

This goes for more than sports--school work, art, playing games, chores, etc.
Describe that picture--honestly--"I see that you used a lot of blue."  (not:  I LOVE it!!  Thank you SO much!!)

I know that volunteers have the best intentions.  But making things too easy, too fabulous, too fun can be detrimental.

Praise is not encouragement.

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

This was spurred on by a comment by Hannah today.  She is in a noncompetitive homeschool league, which she enjoys.  It's much harder work to keep up with the other players.  They naturally accommodate Hannah's abilities, but she knows she's not as fast as the other kids.   Today she wanted to skip soccer.  We talked about it a bit.  Fortunately, I didn't want to go to soccer either, so she managed to win me over.   Not too much later she came to me and said, "I love TopSoccer" (the adaptive soccer program she was in a couple years ago).    I replied, "You liked that, didn't you?  But now you have a more challenging soccer team.  Did you like TopSoccer or did you just like Coach Keith? (who happens to be a firefighter--Hannah's dream job)"    She replied, "I always got goals at TopSoccer."  

Of course, I don't want my daughter to feel like a failure, but I do want her to own her abilities.  I don't want any of my children to feel that they are The Best at Everything.

Hannah's favorite and reliable Buddy, AKA Daddy

New Supplements

***Nutritional supplementation is controversial among the Down syndrome community.  Every supplement we use has been approved by our pediatrician.  Please know that I am just sharing our family's experiences and decisions.   I am in no way trying to convince anyone to do what we're doing.   I welcome questions and concerns, but please be polite. **** 

If you have not yet read my previous vitamin posts, please go here.

I've kept my silence for quite a while.   We had a difficult decision to make after Hannah's drug study last year.   We signed her up for the study to further the body of Down syndrome research.  We saw tremendous promise in Rivastigmine.   But we couldn't bring ourselves to give her it to her without knowing anything about possible long term side effects.   The doctors said that the few side effects were GI in nature (upset stomach, possible ulcers).  But the medication is used for people with Alzheimer's Disease.   There isn't really a "long term" for patients with Alzheimer's.    And our child is an adolescent.   That's a whole different situation.

So we had a very long discussion with our very knowledgeable pediatrician.   She helped us tease out the options--what did we want.

Well, truly, we were very entranced with Hannah's progress with Rivastigmine.  She was so sharp--her short term memory was the best it ever was.  We didn't want her to regress.   We wanted progress, but we wanted assurances that the negative side effects would be extremely minimal.  

Dr. M. suggested we look into the research regarding neural genesis and Prozac.  (I already had read everything on the Changing Minds Foundation long ago.)  Hannah's been on Ginkgo for years, and we've done the oils for a decade, as well as a dozen years of Nutrivene-D.   Prozac has a very long history with children/adolescents, with minimal side effects.  It has a track record.

We decided to give it a trial.   I was sort of hoping that "Vitamin P", as we call it, might smooth out some of Hannah's mood swings.  Dr. M mentioned that the Prozac might lessen some of her OCD tendencies.  (Hannah, as most people with Down syndrome, had a few OCD quirks--all doors must be shut--including cabinets and drawers, getting stuck into routines, and being exceptionally attentive while cleaning her room (2-3 hours long--granted, her room was a mess, but she doesn't cut any corners when it come to "organization", even if it's not MY kind of organization).)

We started on a low dose.  Within a month we noticed that we had more pleasant days without random crabbiness.    She also diminished some of her OCD trends.  After 3 months we went up to 10 mg.   No change.   Four months later we upped it to 15 mg/daily.    

We did not see any cognitive gains.   Life was considerably more congenial.   Don't get me wrong-we always thought Hannah was fine--she had good behavior, she was just randomly moody before.

Dr. M is very cautious.  She has many patients who are on the complete Changing Minds protocol, and all are doing well.  I was eager to try the over-the-counter Phosphatidyl Choline (PC).   Rivastigmine is a choline based drug.  It helps the brain to provide/support acetylcholine (a neurotransmitter) which is in short supply in both the Down syndrome and Alzheimer's populations.   Our brains use acetylcholine to send message from one neuron to another.  This is the foundation for filing things from short term memory (which is quite weak in the Down syndrome population) into long term memory (which is a relative strength).  Rivastigmine has been proven to increase short term memory skills in the Down syndrome population.  Choline is deficient in the DS metabolism.  Choline is also key in keeping cell membranes intact.

We finally got the go-ahead to start PC in late August.   This stuff is EXTREMELY expensive and generally tastes disgusting. Sort of tastes like tar and molasses.  The dosing is a little bit murky.  It's not like we could overdose her, but we'd like to have an accurate dosage so we don't use more than needed. (It's about $180/month.  yes.  ouch.)   There are cheaper versions, and we'll tweak our 1 Tbsp daily sometime, but we want to get a baseline to see how it's working.

About a week after starting the PC, Kate told us that no matter what, we should never stop giving it to her.  They had been were out and about and Hannah was so very chatty and coming up with all kinds of questions and conversational topics that we had never seen or heard before!   She's been on a roll since we started PC.   

At this point, I can tell if Hannah's had her daily dose of PC or not.  Her school work is considerably better--her short-term memory is better, recall is better, auditory processing better.   It's not the same as with the rivastigmine, but she's making progress.

We're not chasing down a "cure".  We're looking for ways to make Hannah's life better.  None of these things we're doing are to change Hannah.  In fact, as we see Hannah grow and develop, we think things like Ginkgo and Phosphatidyl Choline let us see more of who Hannah is.   That extra chromosome isn't just sitting there in every cell in her body.  It's producing excess proteins, producing excess waste products, it uses up too much of one amino acid or another.   It's making pollution in her head.  Neurons rusting.  We are just trying to keep the damage to a minimum.  

Fluff

I've had a frustrating evening, just like last night.   I've been battling electronics, and so far, I am the loser.   So, instead of totally ignoring you, I'm going to just throw out a few pictures and call it a post!

Hannah plays "Draw Something" on her iPad.   I love this drawing.  We didn't even know she knew about Vikings!

(Draw Something is an internet game sort of like Pictionary--draw a picture that will let your teammate figure out your word.  The words are randomly assigned.)

Can you make a moustache out of octopus tentacles?

Summer smooching at the pool

Channeling John Lennon at the ophthalmologist

Channeling the Borg

A visit to the National Zoo during the NDSC Convention

And this, the last of the the photo series...

Exploring at my cousin's fabulous home in Vermont--
pond, stream, amazing blueberries, and lots and lots of space to explore