Sunday, December 21, 2008

Mele Kalikimaka


Wishing you all the Merriest Christmas &
A Prosperous New Year!



Monday, November 24, 2008

Tuesday, November 18, 2008

Down Syndrome Diagnosis - How Best To Discuss the News

This guide has been prepared to assist physicians facing the challenge of informing parents that a child has or may have Down syndrome.

Careful, well informed consultations delivered with sensitivity can have dramatic impact on parents' wellness and ability to cope. What you say and how you say it will have a life-long impact on the health and well being of your patient and the child.
Click here to watch videos

Tuesday, October 21, 2008

Tiana's Preschool Picture 2008-09

She wasn't quite sure if she should smile or not. Tiana loves going to school and socializing with all of her friends. She loves wearing her backpack and insists on jumping over every crack in the side walk on the way to class. We are working hard in the 'potty training' department and so far it seems that she is catching on. She wakes up in the morning and from her naps with a dry diaper 90% of the time. Woohoo, big girl!!

Monday, October 13, 2008

Tiana is October's "Signing Time Star"

Click on the title to link to the Signing Time Website
Congratulations Tiana Grace
We Are So Proud of You!!
XOXOXO

Sunday, October 12, 2008

S. 1810: Became Public Law on October 8, 2008

Let's Celebrate!!

Status: Introduced Jul 18, 2007
Reported by Committee: Mar 13, 2008
Amendments (1 proposed)
Passed Senate: Sep 23, 2008
Passed House: Sep 25, 2008
Signed by President: Oct 8, 2008
Last Action: Became Public Law No: 110-374


Sunday, September 21, 2008

S. 1810, The Prenatally and Postnatally Diagnosed Conditions Awareness Act

This bill must be passed! There is a 90% termination rate of those receiving a prenatal Down syndrome diagnosis. Many of our medical professionals do NOT provide up-to-date & evidence-based information to the parents who receive a prenatal or postnatal diagnosis' (much like our personal story).

Prenatally and Postnatally Diagnosed Conditions Awareness Act - (Sec. 3) Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.

Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
Authorizes appropriations for FY2008-FY2012.

Sponsors:
Sen. Samuel Brownback [R, KS]
Sen. Byron Dorgan [D, ND]
Sen. Edward Kennedy [D, MA]
Sen. Joseph Lieberman [I, CT]
Sen. John McCain [R, AZ]
Sen. Ted Stevens [R, AK]

Committees:
Senate Health, Education, Labor, and Pensions

Monday, June 30, 2008

Tiana Meets Elmo

I was so excited to find out that Sesame Street Live was coming to our little island of Maui. Tiana has been a huge Elmo fan for the past year and a half and regardless of the ticket price we were going! I was contacted by her Early Childhood Development Program staff and they had invited us to meet 2 of the Sesame Street characters the day of their opening night. We weren't sure which 2 until we arrived that morning and I didn't know how she would react to a life size character.


Elmo and Cookie Monster entered the room of about 20 excited toddlers (& parents). At first, all Tiana could do was gasp, point and sign Elmo & Cookie Monster. She finally pointed to the ground so she could get up close & personal...



The next morning was the Sesame Street Live show and we were all so excited (9th row center). However, so soon as Bert & Ernie appeared on stage and began talking the sound was so LOUD it overwhelmed her little ears. She immediately turned around so she was facing me and would not watch the show. We took her to the lobby where they provided us with earplugs - LIFESAVERS! Needless to say, she enjoyed the rest of the show.

Thursday, March 6, 2008

Tiana's 1st School Picture


It's been over 7 weeks since Tiana started school and I am happy to report that she has adjusted fantastically! She had a few days where she would begin to cry just before 'quiet time' but has chosen to accept it for what it is... quiet time, and that's it. She refuses to take a nap for Miss Susie & Miss Donna and likes to test them by getting off her nap mat. Needless to say, she's exhausted by the time she gets home and I have no problem putting her down for a well deserved rest. She has improved greatly with her fine motor skills (pincher's) and she loves matching colors & shapes. She got a trampoline for her birthday (they have one in her classroom too) and that too has helped her gain the coordination she needs to jump with both her feet off the ground - WOOHOO!! According to Miss Susie, Tiana will drink her water from a regular cup, however at home she insists on using her sippy cup - ARRRRRRR. Her ability to verbalize sounds is also improving however, it isn't anything I we can really understand - she loves to babble while she plays. The following are some words she attempts to verbalize:

Thank You is "Dew"
Daddy is "Dadaaa"
Titi is "T T"
Please is "Psss"
Hi is "Hiiiiiii"
Bye is "Hiiiiiii"

There you have it - our princess is well on her way.

Monday, March 3, 2008

An Ambassador Against Fear

By Beverly Beckham
March 2, 2008
The Boston Globe

This is what "internationally renowned" Sherman J. Silber, M.D., writes in his "completely revised and updated" book "How to Get Pregnant," published by Little Brown and Co. last August: "The biggest fear of most pregnant women is that their child will be abnormal, and the most common abnormality they worry about is Down syndrome. . . . These children are severely retarded mentally, and they usually die before their thirtieth birthday."

He also writes: "We can prevent couples from having to face the horror of giving birth to children with otherwise devastating genetic defects such as Down syndrome, cystic fibrosis, muscular dystrophy, mental retardation, etc., that terrify every woman who ever gets pregnant."

Silber's book has sold more than 400,000 copies. It's been translated into Spanish, German, and Russian. He's been on "Oprah," "Good Morning America," and NPR.

Silber may be popular, but he is wrong.

"Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Some are so mildly affected that they live independently and are gainfully employed," says the National Institutes of Health, the federal agency that speaks with authority on this issue.

"Most of the health problems associated with Down syndrome can be treated, and life expectancy is now about 55 years," says the March of Dimes.

And giving birth to a child with Down syndrome or cystic fibrosis or muscular dystrophy or mental retardation is not a "horror." Not according to every woman I know who has given birth to a child with these disabilities.

It takes a long time to alter public perception, to dispel these untruths. I know. My granddaughter has Down syndrome.

"This is Lucy," I say to someone new and Lucy smiles, or doesn't, because she is 4 and 4-year-olds can be sweet or they can be indifferent and stare at the floor.

But mostly she is sweet and says "Hi" before bolting across a room to wherever she wants to be. Mostly she makes a good impression. And this is important because Lucy may be the only child with Down syndrome this person ever meets.

Lucy doesn't know that she's an ambassador. She doesn't know that how she acts may determine what a person thinks of other people with Down syndrome. She doesn't know that she's up against misinformation and fear.

Lucy frightens no one. She's a pretty girl with light brown hair pulled into two pony tails, sparkling green eyes, and a knack for leaving people who meet her not sorry and sad, but happy.

Amy, my friend Anne's daughter, was the same way. She had cystic fibrosis. She lived for 11 years. Too short a time. But a good time, a beloved time, not a horror.

Efforts to change the way people think about kids with disabilities are slow going because there are not enough Lucys telling the world that they're OK. Lucy is not on "Oprah." Lucy is not an "expert."

But the truth is that Lucy shows people that Down syndrome is not the end of the world.

This truth is in books, too, and in movies and blogs and in other people with Down syndrome. But who in the general population would hunt down "Praying with Lior," a documentary about a 13-year-old boy with Down syndrome who loves to pray? Who would read "Gifts," a collection of stories written by mothers of children with Down syndrome? Who would watch "Down Syndrome - The First 18 months," an educational video put out by Woodbine House?

Who will read "Road Map to Holland - How I Found My Way Through My Son's First Two Years With Down Syndrome" when it's released next month? Who will read blogs about Down syndrome just to learn?

Only people who have reason to learn. The rest of the world learns as they go, believing the facts that some "expert" gets wrong. So misinformation lives and old beliefs endure and negativity reigns.

On paper, kids with disabilities do not make a good impression. On paper, Lucy is all negatives. Low muscle tone. Speech delayed. Cognitive impairment. Slow to walk, to learn, to grow. Even her almond-shaped eyes are a negative, though God knows why. They are beautiful, like her mother's, bright and full of wonder.

But in person? Lucy charms.

In person, Lucy is just a person, 4 years old, saying her hellos, then racing away to discover the world.

Beverly Beckham can be reached at bevbeckham@aol.com. Listen to Beverly's weekly podcast at boston.com/news/podcasts.

Tuesday, February 26, 2008

In Memory of Tiana's 'GrandBob'

Robert Chase Prouty was a man of integrity, loyalty, trust and most importantly Unconditional Love. He will be missed by all who knew & LOVED him. God blessed us with 'Bob'.

View this montage created at One True Media
A Memorial Tribute to Robert Prouty

Wednesday, January 16, 2008

Tiana's first day of preschool


As expected, Tiana's transition from being home with Mom 24/7 for her first 3 years of life into preschool was no problem. She started (sped) preschool on Monday January 14, 2008 and is only 1 of 6 children in her class. 4 boys & 2 girls, 1 teacher & 1 aide (love the odds). It's a public school however they require all students to wear uniforms. The uniforms didn't come in Tiana's size so I had to special order them online and had them embroidered with the school logo. She loves waving at all the other children as we walk to her class and they all respond so positively. The first 2 days I stayed a little while in the morning, came back to have lunch with her and then picked her up after school. She would not hesitate to wave 'good-bye' before I was even ready to leave. Now THAT was hard! Here is a video clip of Tiana exploring about 5 minutes after we entered the classroom. Shortly thereafter started sorting bears w/Miss Susie.