This morning Hannah took her first lesson on a Segway! We have enjoyed traveling around our city with the tour guides (lots of history, art and nature). We thought it would be fun if Hannah would be able to join us. I stayed home while James took Hannah.
It was hard work, but she made good progress.
The hardest part for her is to keep her eyes up. It's the same issue that we had when she was learning to ride a bike. (She has made several forays into bicycling; she can keep her balance, but she doesn't pay attention to her surroundings.)
She'll need a few more lessons to be sure she's safe out on the roads, but she's excited!
I'm so proud of her--she loves to try new things, from food to sports to travel!
After much harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.
August 23, 2014
August 17, 2014
Still kickin'
Well, long lost me.
We've had quite the year or two. Too much to fill you in, but you'll have to go with what I've got.
When we last chatted, January 3rd 2013, was the day before Hannah was diagnosed with endocarditis. She had been having random seemingly unrelated health issues. Fevers, not much stamina, sore toe, headache, sore finger, night sweats. All days apart--no rhyme or reason. We ended up in our FAVORITE pediatrician who did some bloodwork, which showed wacky levels of several things. This bought us a trip to the hematology/oncology clinic at our local teaching hospital (MCV, Richmond, VA).
Short story, before giving Hannah a marrow biopsy, a medical student suggested that we have an echocardiogram and that's how she got a diagnosis of endocarditis. She was admitted and stayed for a couple nights, getting a PICC line (a heavy duty long-active IV that deposits medication close to the heart, and allows blood draws without new needles) and started heavy antibiotics. She was discharged on a Sunday. We had a home nurse come to teach us how to use the IV medications. 48 hours later we rushed Hannah back to the hospital. She was in agony--abdominal pain. She was admitted. Many many tests and 36 hours later they diagnosed right kidney failure. Apparently she had a clot or vegetation (that's what they call the endocarditis bacteria colony breaks away).
She was in the hospital for nearly a month with many other ancillary problems (seizure from a Vitamin K shot, tendonitis--can't walk, bone marrow biopsy to rule out leukemia, etc). Once she was ambulatory we had 6 more weeks of home IV treatment. She is WHOLE. She will have to take blood pressure medication for the rest of her life due to her kidney problem, but if that's the worst, we can live with that.
Did I tell you that Chris graduated from William and Mary? And that he was accepted to Yale and UNC-Chapel Hill for graduate school? He chose Chapel Hill. He's just starting his second year in their chemistry PhD.
Soon we'll be starting the end of 9th grade soon (we didn't get it all done). Soccer starts soon, along with tap dance. Haven't planned out the rest of her schedule for the fall, but we'll figure it out.
Thanks for being here--it's been a long wait, but I'm back--at least for today!
We've had quite the year or two. Too much to fill you in, but you'll have to go with what I've got.
When we last chatted, January 3rd 2013, was the day before Hannah was diagnosed with endocarditis. She had been having random seemingly unrelated health issues. Fevers, not much stamina, sore toe, headache, sore finger, night sweats. All days apart--no rhyme or reason. We ended up in our FAVORITE pediatrician who did some bloodwork, which showed wacky levels of several things. This bought us a trip to the hematology/oncology clinic at our local teaching hospital (MCV, Richmond, VA).
Short story, before giving Hannah a marrow biopsy, a medical student suggested that we have an echocardiogram and that's how she got a diagnosis of endocarditis. She was admitted and stayed for a couple nights, getting a PICC line (a heavy duty long-active IV that deposits medication close to the heart, and allows blood draws without new needles) and started heavy antibiotics. She was discharged on a Sunday. We had a home nurse come to teach us how to use the IV medications. 48 hours later we rushed Hannah back to the hospital. She was in agony--abdominal pain. She was admitted. Many many tests and 36 hours later they diagnosed right kidney failure. Apparently she had a clot or vegetation (that's what they call the endocarditis bacteria colony breaks away).
She was in the hospital for nearly a month with many other ancillary problems (seizure from a Vitamin K shot, tendonitis--can't walk, bone marrow biopsy to rule out leukemia, etc). Once she was ambulatory we had 6 more weeks of home IV treatment. She is WHOLE. She will have to take blood pressure medication for the rest of her life due to her kidney problem, but if that's the worst, we can live with that.
Did I tell you that Chris graduated from William and Mary? And that he was accepted to Yale and UNC-Chapel Hill for graduate school? He chose Chapel Hill. He's just starting his second year in their chemistry PhD.
Chris with my parents, May 2013
Later that month James' job ended here in the Richmond area. He quickly got another job--in Denver, CO. We prepped the house for sale while James drove out to start his new position. We sold the house within two weeks. The day that we ratified the contract for the sale, the new job dissolved. We found ourselves without a job, and no house (no, we didn't fight the contract--we'd just have had to sell it later when we got a new job somewhere else). We decided to stay in the Richmond area, renting a little house in November. Kate had moved locally on her own--working as a Police Dispatcher while working on her MBA, Chris moved to North Carolina, so it's just the three of us (plus the doggies and Puddle).
Finding a job has been frustrating. We are having a lot of time together. We're generally in good spirits, with some ups and downs.
Hannah has been living well: tackling the bass guitar, singing in her voice choir, playing softball with the homeschool team, performing in LIVE ART with Jason Mraz and kd lang, learning to play ukelele, working hard with geometry (she loves it, even if she uses a calculator to compute, she can create an equilateral triangle using a compass and a straight edge), spending FaceTiming her best friend Shea, mastering an omelette, donating 14 inches of hair, and walked her first 5K to help with Bone Marrow donation.
Hannah still wants to be a firefighter. For her birthday she chose to bake cookies to deliver to our local fire station--Station 16! Perfect for her Sweet 16th birthday.
Thanks for being here--it's been a long wait, but I'm back--at least for today!
January 3, 2013
Catch all....
So, here I am again, late as usual--skipping an entire month of posting.
We've had a busy holiday season:
Hannah and I made a trip to NYC in mid-December. We went to see the Rockettes at Radio City Music Hall.
Home we came, and brought a stomach flu. Not so much fun, but it was over in a few days, just in time for Christmas.
Grandparents, friends, holiday lights--we had it all! Hope your holidays were filled with fun and the people you love.
We've had a busy holiday season:
| Tree Hunters! |
| The DSAGR Christmas Party! |
| First official choir concert, with Mrs. P. (Hannah did a great job staying on pitch!) |
| Annual Gingerbread House building with Hannah's good friend B. |
Hannah and I made a trip to NYC in mid-December. We went to see the Rockettes at Radio City Music Hall.
| My favorite picture of the trip! |
But the real reason for going to NYC was to see Hannah's best cousin dance in the Knickerbocker Suite. Mary is the same age as Hannah and has the same hair! Mary was exquisite--a very accomplished ballerina.
Home we came, and brought a stomach flu. Not so much fun, but it was over in a few days, just in time for Christmas.
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| Firetrucks galore! |
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| Dinosaurs galore! |
Grandparents, friends, holiday lights--we had it all! Hope your holidays were filled with fun and the people you love.
November 29, 2012
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.
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.
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”.
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.
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.
November 6, 2012
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...
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.
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".)
November 1, 2012
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!
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!
October 31, 2012
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".
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".
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| 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.
October 30, 2012
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...
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.
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...
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| 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!) |
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
October 29, 2012
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.
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.)
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.)
October 28, 2012
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!
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!
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!
October 27, 2012
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...
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!
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? |
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| 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!
October 25, 2012
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.
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.
October 24, 2012
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.
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!)
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!!!!
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! |
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!!!!
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