Wednesday, December 26, 2012
Thursday, November 1, 2012
2013 Buddy Walk Kickoff Meeting - Location Change
2013 Buddy Walk Kickoff Meeting
November 13th @ 6:30 pm
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Wednesday, October 31, 2012
31 for 21 Day #31
Posted on SchulenburgSticker.com
Down Syndrome Foundation entering 2nd year
Posted: October 23, 2012
The Down Syndrome Foundation of South Texas (DSFSTX), formed in July 2011 by several families wanting to bring services for Down syndrome individuals to the area, is now entering its second year and has sponsored a number of activities to help achieve its goal.
Since July 2011, the organization has sponsored three educational seminars, hosted a summer music therapy program for members and individuals with disabilities, and celebrated with two family fun events (one at Magic Bounce in Victoria and one at Splashway Water Park in Sheridan).
DSFSTX has two representatives on the Texas Down Syndrome Advocacy Coalition involved in legislative advocacy.
This year, the organization held its first Buddy Walk in February and A“Maze”ing Kid Fall Festival in October at Rocky Creek Maze to help spread awareness.
The members worked two Hallettsville Market Days to raise funds for the organization as well as community awareness, and hosted Dimes for Downs in area schools in October 2011 as an awareness project geared toward elementary-age students.
Members supported and participated in the Dash for Downs run in Yoakum in May 2012.
DSFSTX also supported families and children by donating to the National Down Syndrome Society, sponsoring a family for Audrey's Day at the Beach in Rockport (a special event for families of individuals with Down syndrome), and being a local sponsor of the Special Olympics. DSFSTX also made a donation to South Texas Sparkles, a student-run cheerleading program designed for students with special needs.
Entering its second year, the organization plans to increase opportunities for members and the community to become more involved through educational seminars, the Buddy Walk, the A“Maze"ing Kid Fall Festival and other events throughout the year.
DSFSTX serves the rural communities in Lavaca, DeWitt, Fayette, Gonzales and neighboring counties. Its goals are to teach others about Down syndrome by building public awareness and acceptance of the abilities of individuals with Down syndrome; learn more about Down syndrome by providing seminars and workshops from professionals that work with Down syndrome individuals; and celebrate the individuals with Down syndrome that have touched people’s lives.
DSFSTX thanks everyone for their support and contributions that helped make the first year such a success. For more information, follow DSFSTX on Facebook or its blog site dsfstx.blogspot.com, or email dsfstx@yahoo.com.
Since July 2011, the organization has sponsored three educational seminars, hosted a summer music therapy program for members and individuals with disabilities, and celebrated with two family fun events (one at Magic Bounce in Victoria and one at Splashway Water Park in Sheridan).
DSFSTX has two representatives on the Texas Down Syndrome Advocacy Coalition involved in legislative advocacy.
This year, the organization held its first Buddy Walk in February and A“Maze”ing Kid Fall Festival in October at Rocky Creek Maze to help spread awareness.
The members worked two Hallettsville Market Days to raise funds for the organization as well as community awareness, and hosted Dimes for Downs in area schools in October 2011 as an awareness project geared toward elementary-age students.
Members supported and participated in the Dash for Downs run in Yoakum in May 2012.
DSFSTX also supported families and children by donating to the National Down Syndrome Society, sponsoring a family for Audrey's Day at the Beach in Rockport (a special event for families of individuals with Down syndrome), and being a local sponsor of the Special Olympics. DSFSTX also made a donation to South Texas Sparkles, a student-run cheerleading program designed for students with special needs.
Entering its second year, the organization plans to increase opportunities for members and the community to become more involved through educational seminars, the Buddy Walk, the A“Maze"ing Kid Fall Festival and other events throughout the year.
DSFSTX serves the rural communities in Lavaca, DeWitt, Fayette, Gonzales and neighboring counties. Its goals are to teach others about Down syndrome by building public awareness and acceptance of the abilities of individuals with Down syndrome; learn more about Down syndrome by providing seminars and workshops from professionals that work with Down syndrome individuals; and celebrate the individuals with Down syndrome that have touched people’s lives.
DSFSTX thanks everyone for their support and contributions that helped make the first year such a success. For more information, follow DSFSTX on Facebook or its blog site dsfstx.blogspot.com, or email dsfstx@yahoo.com.
Tuesday, October 30, 2012
31 for 21 Day #30
2013 Buddy Walk Kickoff Meeting
November 13th @ 6:30 pm
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Lavaca Medical Center
1400 N. Texana, Hallettsville, TX
Monday, October 29, 2012
31 for 21 Day #29
Anyone who comes in contact with Morgan Hartman never forgets the meeting. She brings smiles, hugs and unconditional love to everyone she encounters. When you interact with Morgan, what you see and hear is truly from her heart. There are no filters or barriers to Morgan’s expressions and her genuine desire to be your true friend.
Morgan is very outgoing yet shy about certain things. She recognizes her special needs and at times wishes she “were another kid,” but even so, she never forgets to be kind, thoughtful and witty – something we all wish we could achieve more often.
She embraces life not truly understanding every detail of that which surrounds her, but with a keen eye and ear for the little details many of us take for granted or never notice.
She is a typical teenager who enjoys her music, videos and her dog and cat. Morgan has had to deal with some physical challenges in her life, but she has overcome them beyond all expectations because of her positive attitude and perseverance.
While recuperating on a ventilator in ICU after an extremely complicated surgery, Morgan still made sure all around her were comforted whether through her unforgettable smile or an occasional thumbs up to let everyone know she was alright.
Morgan’s boundless love and ability to “soar” above her challenges were the true inspiration for this amazing park. Morgan’s desire to make everyone around her happy is magnified and expanded by the worldwide appeal of this park. That happiness will spread to all those who have special needs, their families, caregivers and those loving friends who volunteer their time to help ensure the success of Morgan’s Wonderland. It is Morgan’s fervent hope that everyone with special needs - young and old, healthy or ailing, introspective or outgoing - will be touched in a very special way by this park. An oasis of friendship . . . a shrine of inclusion . . . an unforgettable wonderland . . . Morgan’s Wonderland!
Sunday, October 28, 2012
31 for 21 Day #28
Health Care Guidelines
http://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/
http://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/
Saturday, October 27, 2012
31 for 21 Day #27
Source: http://www.nih.gov/news/
NIH establishes Down syndrome patient registry
Registry connects individuals with Down syndrome with researchers
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.
People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.
The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."
Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.
"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."
Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.
"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
NIH establishes Down syndrome patient registry
Registry connects individuals with Down syndrome with researchers
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.
People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.
The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."
Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.
"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."
Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.
"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
Friday, October 26, 2012
31 for 21 Day #26
Noah’s Dad’s “Wall of Awesome” Highlights Down Syndrome Awareness Month
by Rick Smith | Washington, DC | LifeNews.com | 10/15/12 7:15 PM
Shortly after our son Noah surprised us by being born with Down syndrome, we were shocked to learn that 80-92% (depending on which study you read) of children known to have Down syndrome were aborted. There are a variety of reasons people give as to why they choose to abort their child, however I believe a major reason is an abundance of inaccurate information about what it’s like to have a child with Down syndrome.
Parents are told their child will never smile, never laugh (yah, right), will sit around and drool on themselves all day, etc; so it would be “better” to simply terminate the “fetus” and try again. In fact, the first words out of my wife’s OBGYN when Noah was born was not congratulations, it was “I’m so sorry.”
I’ll never forget that day, and that comment.
As a Christian I can’t sit back and do nothing while so many children are being killed simply because they have a 3rd copy of their 21st chromosome. My hope is that as Noah’s Dad, I can help show the world what children with Down syndrome are really like by promoting as many true and accurate stories as I can. By teaching them what the characteristics of Down syndrome really are. And by showing our culture how worthy of life these children are.
Since October is National Down Syndrome Awareness Month I have created a “Wall of Awesome” where people can read and share stories of people living with Down syndrome. The Wall of Awesome is a celebration of life, and I encourage you to check it out for yourself, then share it with as many people as you can.
Together we can help replace false stereotypes, with true stories. Stories that show the world all life is valuable.
By the way, we are also getting ready to show the world even more stories of life on World Down Syndrome Day, so stay tuned!
LifeNews Note: Rick Smith is Noah’s Dad and he’s creating an online story about his son who was born with Down syndrome on his blog. In addition he manages Noah’s Dad’s Facebook community, and Noah’s Dad Twitter stream; and enjoys using social media to show the world that children born with Down syndrome are worthy of life.
by Rick Smith | Washington, DC | LifeNews.com | 10/15/12 7:15 PM
Shortly after our son Noah surprised us by being born with Down syndrome, we were shocked to learn that 80-92% (depending on which study you read) of children known to have Down syndrome were aborted. There are a variety of reasons people give as to why they choose to abort their child, however I believe a major reason is an abundance of inaccurate information about what it’s like to have a child with Down syndrome.
Parents are told their child will never smile, never laugh (yah, right), will sit around and drool on themselves all day, etc; so it would be “better” to simply terminate the “fetus” and try again. In fact, the first words out of my wife’s OBGYN when Noah was born was not congratulations, it was “I’m so sorry.”
I’ll never forget that day, and that comment.
As a Christian I can’t sit back and do nothing while so many children are being killed simply because they have a 3rd copy of their 21st chromosome. My hope is that as Noah’s Dad, I can help show the world what children with Down syndrome are really like by promoting as many true and accurate stories as I can. By teaching them what the characteristics of Down syndrome really are. And by showing our culture how worthy of life these children are.
Since October is National Down Syndrome Awareness Month I have created a “Wall of Awesome” where people can read and share stories of people living with Down syndrome. The Wall of Awesome is a celebration of life, and I encourage you to check it out for yourself, then share it with as many people as you can.
Together we can help replace false stereotypes, with true stories. Stories that show the world all life is valuable.
By the way, we are also getting ready to show the world even more stories of life on World Down Syndrome Day, so stay tuned!
LifeNews Note: Rick Smith is Noah’s Dad and he’s creating an online story about his son who was born with Down syndrome on his blog. In addition he manages Noah’s Dad’s Facebook community, and Noah’s Dad Twitter stream; and enjoys using social media to show the world that children born with Down syndrome are worthy of life.
Thursday, October 25, 2012
31 for 21 Day #25
Just Like You–Down Syndrome: A Big Message in 13 Minutes
posted on Down Syndrome Daily
by Abby Eden of Fox 4 KC
The movie is called Just Like You-Down Syndrome. It’s the third in a series of Just Like You Films, made in the metro that aims to educate others about a unique situation. The latest focuses on Down Syndrome.
Hundreds of fans lined up Monday night, waiting to see the stars of the movie. What emerged weren’t the pouting faces of starlets, but the glowing faces of teenagers on a mission.
“I just wanted to encourage others to be friends with someone who has Down Syndrome because it really is a life-changing experience,” said Bobby Engen.
These best friends wanted to tell other people what it’s like to be a teenager with Down Syndrome. They’re spreading the message with the help of Just Like You films and the Down Syndrome Guild.
“The mission of Just Like You Films is to educate kids and other kids about unique circumstances that they may not otherwise know about,” said Jen Greenstreet, owner of Just Like You Films.
Their 13-minute film is expected to be shown across the country, even the world, and they’re enjoying their first night as movie stars.
“It’s amazing,” said Elyssa Schmitz.
It all started with the story of six best friends who decided to tell the world how much they’re “just like you”. The funding for the movie came from private donations. It took two years to make.
Wednesday, October 24, 2012
31 for 21 Day #24
Medical School Faculty: Require complete education on Down syndrome for 3rd year medical students.
No parent should ever feel like their baby's life starts out with a death; the death of their dreams for the future, the end of their hope for a happy, healthy child. But it happens every day, because parents don't have immediate access to the help or reassurance they need to overcome the myths and misconceptions surrounding Down syndrome in our society.
Tuesday, October 23, 2012
Monday, October 22, 2012
31 for 21 Day #22
My Great Story Campaign
NDSS Website
The My Great Story campaign is the largest NDSS public awareness initiative. The goal of the campaign is to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. All are welcome to participate in the campaign, by sharing a story or voting and commenting on the stories already in the collection. The stories are written by self-advocates, their family members, friends, teachers, coworkers, coaches and anyone else who has a positive story to share about someone with Down syndrome.
http://www.ndss.org/My-Great-Story/Virtual-Storybook/Friends/Friendship/
NDSS Website
The My Great Story campaign is the largest NDSS public awareness initiative. The goal of the campaign is to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. All are welcome to participate in the campaign, by sharing a story or voting and commenting on the stories already in the collection. The stories are written by self-advocates, their family members, friends, teachers, coworkers, coaches and anyone else who has a positive story to share about someone with Down syndrome.
http://www.ndss.org/My-Great-Story/Virtual-Storybook/Friends/Friendship/
Sunday, October 21, 2012
31 for 21 Day #21
Life skills for Down syndrome
fostered by supportive open employment
by
Vicky Manley from Science Network Western
Austrialia:
as shown on DownSyndromeDaily blog
RESEARCH exploring open employment and the transition from school to adulthood for young adults with Down syndrome has won the ‘Three Minute Thesis’ (3MT) competition for an ECU Occupational Therapist.
PhD candidate Ms Kitty-Rose Foley presented the winning 3MT ‘Life after school: there’s room for improvement for young adults with Down syndrome’ about research into transitioning young adults with Down syndrome.
The research examines positive and adverse influences in the transition from school to post-school.
“I was particularly interested in exploring the factors which may influence different outcomes post-school, such as: behaviour, family quality of life, young adults quality of life, functioning in activities of daily living, socio-economic status, gender and living region,” says Ms Foley.
Participating families completed questionnaires over a longitudinal period from 2004–2011.
Part one of the questionnaire pertained to a young person’s characteristics and part two, family characteristics.
The research examined factors associated with different day occupations such as open employment, training, sheltered employment and/or day recreational programs.
According to Ms Foley, the emerging results suggest that families of young people who are attending supported open employment [post school] are achieving better outcomes in terms of family quality of life.
Interestingly open employment even for a small amount of time per day achieved better outcomes.
Behaviour patterns improved in those participating in open employment as opposed to those who mainly attended day recreation programs—whose behaviour problems showed an increase.
“This could be due to modelling appropriate behaviours from typically developing colleagues or perhaps these young people are more focused on their day to day tasks,” says Ms Foley.
The findings also indicate that intellectually disabled young adults were rarely consulted on decisions about their future—irrespective of their individual abilities, interests and capabilities.
The research concluded that a young person functioning in activities of daily life (self care, communication, community skills) and good family support were associated with participating in open employment and better quality family life.
“This provides important information to guide services and policy when targeting the intervention for young people with Down syndrome,” says Ms Foley.
Ms Foley is with the School of Exercise and Health Sciences at ECU and is based at the Telethon Institute for Child Health Research in Subiaco working as an OT for children with a range of disabilities.The competition allows researchers three minutes to communicate their thesis and Ms Foley said she was lucky to win the Edith Cowan University (ECU) finals.
RESEARCH exploring open employment and the transition from school to adulthood for young adults with Down syndrome has won the ‘Three Minute Thesis’ (3MT) competition for an ECU Occupational Therapist.
PhD candidate Ms Kitty-Rose Foley presented the winning 3MT ‘Life after school: there’s room for improvement for young adults with Down syndrome’ about research into transitioning young adults with Down syndrome.
The research examines positive and adverse influences in the transition from school to post-school.
“I was particularly interested in exploring the factors which may influence different outcomes post-school, such as: behaviour, family quality of life, young adults quality of life, functioning in activities of daily living, socio-economic status, gender and living region,” says Ms Foley.
Participating families completed questionnaires over a longitudinal period from 2004–2011.
Part one of the questionnaire pertained to a young person’s characteristics and part two, family characteristics.
The research examined factors associated with different day occupations such as open employment, training, sheltered employment and/or day recreational programs.
According to Ms Foley, the emerging results suggest that families of young people who are attending supported open employment [post school] are achieving better outcomes in terms of family quality of life.
Interestingly open employment even for a small amount of time per day achieved better outcomes.
Behaviour patterns improved in those participating in open employment as opposed to those who mainly attended day recreation programs—whose behaviour problems showed an increase.
“This could be due to modelling appropriate behaviours from typically developing colleagues or perhaps these young people are more focused on their day to day tasks,” says Ms Foley.
The findings also indicate that intellectually disabled young adults were rarely consulted on decisions about their future—irrespective of their individual abilities, interests and capabilities.
The research concluded that a young person functioning in activities of daily life (self care, communication, community skills) and good family support were associated with participating in open employment and better quality family life.
“This provides important information to guide services and policy when targeting the intervention for young people with Down syndrome,” says Ms Foley.
Ms Foley is with the School of Exercise and Health Sciences at ECU and is based at the Telethon Institute for Child Health Research in Subiaco working as an OT for children with a range of disabilities.The competition allows researchers three minutes to communicate their thesis and Ms Foley said she was lucky to win the Edith Cowan University (ECU) finals.
Saturday, October 20, 2012
31 for 21 Day #20
WELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Friday, October 19, 2012
31 for 21 Day #19
Love. Listen. Learn.
"Your Loved One is Having a Baby with Down Syndrome"
from DownSyndromePregnancy.org
Loved Ones Booklet
Included in this booklet is information on DS, the emotions of the mother, and a section on commonly made mistakes. Even if you don't have someone in your life expecting a baby with DS, the information is useful in helping a loved one thru an unexpected pre-natal or post-natal diagnosis.
"Your Loved One is Having a Baby with Down Syndrome"
from DownSyndromePregnancy.org
Loved Ones Booklet
Included in this booklet is information on DS, the emotions of the mother, and a section on commonly made mistakes. Even if you don't have someone in your life expecting a baby with DS, the information is useful in helping a loved one thru an unexpected pre-natal or post-natal diagnosis.
Thursday, October 18, 2012
Wednesday, October 17, 2012
31 for 21 Day #17
"With Arms Open Wide"
In a joint project, the Down Syndrome Foundation and the Down Syndrome League of Victoria participated in creating this amazing and uplifting book featuring members of both organizations. The project was a special awareness campaign for October, Down syndrome Awareness Month.
A special thank you to L-Ann Imaging and Ingrid Junor for creating this book.
The books are for sale by both organizations for $5 and will be utilities in new parent packets for parents, and parents-to-be that have received a Down syndrome diagnosis.
If you would like to obtain a copy, email dsfstx@yahoo.com. The Down Syndrome League of Victoria will have books available for purchase at their Buddy Walk this Saturday.
In a joint project, the Down Syndrome Foundation and the Down Syndrome League of Victoria participated in creating this amazing and uplifting book featuring members of both organizations. The project was a special awareness campaign for October, Down syndrome Awareness Month.
A special thank you to L-Ann Imaging and Ingrid Junor for creating this book.
The books are for sale by both organizations for $5 and will be utilities in new parent packets for parents, and parents-to-be that have received a Down syndrome diagnosis.
If you would like to obtain a copy, email dsfstx@yahoo.com. The Down Syndrome League of Victoria will have books available for purchase at their Buddy Walk this Saturday.
Tuesday, October 16, 2012
31 for 21 Day #16
Take My Hand
by Heather Spears Kallusfrom Sips of Sunshine blog
 |
| Photo Credit: lightfoot at morgueFile.com |
(A
Pro-Life Poem for Down Syndrome Awareness Month)
Take my
hand and not my life – please Mommy let me live,
The extra chromosome inside means I have more to
give.
I know you’re scared about the news, but please let
me explain,
Don’t think of what you might be losing – think of
what you’ll gain.
A loving
child with almond eyes – a deep crease in my palm,
In that crazy world out there – I will be your
calm.
I might be small and flexible – a tiny nose and
ears,
We’re more alike than different, you’ll learn
throughout the years.
Sometimes
things won’t work quite right, but please give me a
chance,
I’ll need some extra time for sure, but soon I’ll
sing and dance.
I might have trouble talking too; just ask me to
repeat,
I’ll steal your heart, Mommy and Dad, the moment that
we meet.
I’ll need
a little longer, to learn to read and write,
Just show me how to draw and count, you’ll see I’m
very bright.
If you teach me early on, my IQ will just
soar,
You’ll tell me that you love me so – I’ll say, “I
love you MORE!”
I’ll go to
school and work real hard to make you very proud,
I’ll teach you how to truly love because I’ll love
out loud.
No scientist can tell you why...I was made this
way,
But Mommy, please be certain, God hand-picked you on
that day.
He chose
you, Mom and Daddy, because He knew you’d be,
The ones who’d be just right – for the special gift
of me.
So, when I’m born, please take my hand – gentle is my
soul,
God sent me down to teach you trust – that IS my very
goal.
My joy
will be contagious – my heart, an open door,
I’ll show you what life’s all about – I’ll leave you
wanting more.
More of what God offers – that God IS love
Himself,
Not to sweat the small stuff – leave those worries on
the shelf.
So, Mom
and Daddy, take my hand – I will be your light,
I won’t withhold an ounce of love – I’ll love with
all my might.
You won’t be able...to rush through…this life, while
by my side,
You’ll have to slow it down a notch, since I will be
your guide.
I’m not
perfect, Mom and Dad, and really no one is,
The one thing that I DO know…is only that we’re
His.
It won’t be long now, Mom and Dad – my birthday’s
coming soon,
I’ll be there...in twenty weeks – please bring me a
balloon.
Accept my
own uniqueness; respect what I can do,
Patience is the key to see…I’m special just like
you.
My journey might look different – just work with me
each day,
I’ll bring so much…to your life…WORDS just
cannot say.
On my
eleventh birthday, I want to bake my cake,
And, Daddy, let’s go fishing. God showed me a GREAT lake!
He actually showed me many things before He sent me
down,
Mostly, Mom, He taught me…that love is NOT a
noun.
Dad...love’s a verb…a mighty action word, it surely
is,
I’ll give you just a tiny glimpse...of the love
that’s His.
You’ll see Christ in all I do and all I say each
day,
You might pay more attention to the little things –
you may.
Please
hold me close when I am born – I really am a gem,
My
talents might be hidden – you can help me find them.
Why IS Down Syndrome set aside for just a numbered
few?
Cause God...He chooses wisely – not just anyone will
do.
So, take
my hand and not my life – please Mommy let me live,
The extra chromosome inside means I have more to
give.
I’m glad you’re not as scared now, Mom, cause no one
is to blame,
By
choosing life, you saved an angel – one you get to name.
Monday, October 15, 2012
31 for 21 Day #15
We had an A"maze"ing time at our 2nd Annual A"maze"ing Kids Fall Festival.
A special thanks to everyone who came to support the Down Syndrome Foundation of South Texas.
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A special thanks to everyone who came to support the Down Syndrome Foundation of South Texas.
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Sunday, October 14, 2012
31 for 21 Day #14
The Three Types of Down Syndrome
from Home Remedies for you .com:
Human chromosomes have a unique genetic code, which instruct and control the division, function as well as the growth of cells. Under normal circumstances, your cells contain 23 pairs of chromosomes, where one chromosome comes from your dad and the other from your mom. However, at times the cells could have three copies of a particular chromosome, instead of two. People who have three copies of the Chromosome 21 are born with Down syndrome. Other genetic problems occur when the duplicated chromosomes are other than Chromosome 21. Therefore Down syndrome is also commonly known as Trisomy 21.
Not a lot of people are aware of the fact that Down syndrome can be classified into three different kinds. Given below are facts about the three types of Down syndrome –
Standard Trisomy 21 or Nondisjunction Down syndrome
Around 90% to 95% of all the people who have Down syndrome are suffering from Standard Trisomy 21. Individuals who have 3 copies of Chromosome 21 in all the cells are born with this form of Down syndrome. Trisomy 21 occurs when there is an abnormal division of cells during the development of the egg cell or even the sperm cell. Around 88% of all Down syndrome instances come from the nondisjunction in the maternal gamete; while the paternal side constitutes of 8% of the total cases.
Mosaicism
Standard Trisomy 21 occurs when there is a nondisjunction in the gametes before conception, which affects all the cells present in the child’s body. However, at times only certain cells are affected by the abnormal division, while others are just fine. This is known as Mosaic Down syndrome, or Mosaicism. There are two ways in which this form of Down syndrome can occur. The first is a nondisjunction process that occurs during the earlier stages when the cell divides in the embryo that is normal, which results in few of cells being affected by Trisomy 21. The other way occurs when an embryo with Down syndrome goes through nondisjunction, but certain cells within the embryo return to the standard chromosome arrangement. This form of the disorder is quite rare and constitutes for about 1% or 2% of observed Down syndrome instances.
Translocation
Sometimes, Down syndrome is caused when part of Chromosome 21 becomes attached or trans-located to a different chromosome, before or during conception. People who have Translocation Down syndrome have the normal two copies of chromosome 21. However, they also have extra material from chromosome 21 attached onto the trans-located chromosome. Translocation Down syndrome is the only type that can be passed on from a parent to the child. This form of the disorder is also quite uncommon and constitutes for about 2% or 3% of observed Down syndrome instances.
from Home Remedies for you .com:
Human chromosomes have a unique genetic code, which instruct and control the division, function as well as the growth of cells. Under normal circumstances, your cells contain 23 pairs of chromosomes, where one chromosome comes from your dad and the other from your mom. However, at times the cells could have three copies of a particular chromosome, instead of two. People who have three copies of the Chromosome 21 are born with Down syndrome. Other genetic problems occur when the duplicated chromosomes are other than Chromosome 21. Therefore Down syndrome is also commonly known as Trisomy 21.
Not a lot of people are aware of the fact that Down syndrome can be classified into three different kinds. Given below are facts about the three types of Down syndrome –
Standard Trisomy 21 or Nondisjunction Down syndrome
Around 90% to 95% of all the people who have Down syndrome are suffering from Standard Trisomy 21. Individuals who have 3 copies of Chromosome 21 in all the cells are born with this form of Down syndrome. Trisomy 21 occurs when there is an abnormal division of cells during the development of the egg cell or even the sperm cell. Around 88% of all Down syndrome instances come from the nondisjunction in the maternal gamete; while the paternal side constitutes of 8% of the total cases.
Mosaicism
Standard Trisomy 21 occurs when there is a nondisjunction in the gametes before conception, which affects all the cells present in the child’s body. However, at times only certain cells are affected by the abnormal division, while others are just fine. This is known as Mosaic Down syndrome, or Mosaicism. There are two ways in which this form of Down syndrome can occur. The first is a nondisjunction process that occurs during the earlier stages when the cell divides in the embryo that is normal, which results in few of cells being affected by Trisomy 21. The other way occurs when an embryo with Down syndrome goes through nondisjunction, but certain cells within the embryo return to the standard chromosome arrangement. This form of the disorder is quite rare and constitutes for about 1% or 2% of observed Down syndrome instances.
Translocation
Sometimes, Down syndrome is caused when part of Chromosome 21 becomes attached or trans-located to a different chromosome, before or during conception. People who have Translocation Down syndrome have the normal two copies of chromosome 21. However, they also have extra material from chromosome 21 attached onto the trans-located chromosome. Translocation Down syndrome is the only type that can be passed on from a parent to the child. This form of the disorder is also quite uncommon and constitutes for about 2% or 3% of observed Down syndrome instances.
Saturday, October 13, 2012
Friday, October 12, 2012
31 for 21 Day #12
2012 Down Syndrome Foundation of South Texas October Awareness Campaign
This book will be delivered to elementary schools in Lavaca, Dewitt, Fayette, Colorado, Austin and Wharton counties with a request for elementary school teachers to read it to their classes in October to promote Down syndrome awareness and it will be donated to the school libraries for future readers to enjoy.
Thursday, October 11, 2012
31 for 21 Day #11
Myths & Truths
Source: NDSS
MYTH: People with Down syndrome have a short life span.
TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.
MYTH: Down syndrome is hereditary and runs in families.
TRUTH: Down syndrome is hereditary in approximately 1% of all instances. In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35). Translocation is the only type of Down syndrome known to have hereditary link. Translocation accounts for 3 to 4% of all cases of Down syndrome. Of those, one third (or 1% of all cases of Down syndrome) are hereditary.
MYTH: Most children with Down syndrome are born to older parents.
TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.
MYTH: People with Down syndrome have severe cognitive delays.
TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
MYTH: Most people with Down syndrome are institutionalized.
TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.
MYTH: Parents will not find community support in bringing up their child with Down syndrome.
TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.
MYTH: Children with Down syndrome must be placed in segregated special education programs.
TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
MYTH: Adults with Down syndrome are unemployable.
TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.
MYTH: People with Down syndrome are always happy.
TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.
MYTH: Down syndrome can never be cured.
TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Source: NDSS
MYTH: Down syndrome is a rare disorder.
TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, or approximately 6,000 births per year. Today, there are more than 400,000 people with Down syndrome living in the United States. MYTH: People with Down syndrome have a short life span.
TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.
MYTH: Down syndrome is hereditary and runs in families.
TRUTH: Down syndrome is hereditary in approximately 1% of all instances. In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35). Translocation is the only type of Down syndrome known to have hereditary link. Translocation accounts for 3 to 4% of all cases of Down syndrome. Of those, one third (or 1% of all cases of Down syndrome) are hereditary.
MYTH: Most children with Down syndrome are born to older parents.
TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.
MYTH: People with Down syndrome have severe cognitive delays.
TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
MYTH: Most people with Down syndrome are institutionalized.
TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.
MYTH: Parents will not find community support in bringing up their child with Down syndrome.
TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.
MYTH: Children with Down syndrome must be placed in segregated special education programs.
TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
MYTH: Adults with Down syndrome are unemployable.
TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.
MYTH: People with Down syndrome are always happy.
TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.
MYTH: Down syndrome can never be cured.
TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Wednesday, October 10, 2012
31 for 21 Day #10
Preferred Language Guide
Source: NDSS
Use this language when referring to Down syndrome and people who have Down syndrome:
Source: NDSS
Use this language when referring to Down syndrome and people who have Down syndrome:
- People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."
- Down syndrome is a condition or a syndrome, not a disease.
- People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.
- Down vs. Down's - NDSS uses the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.
- While it is still clinically acceptable to say "mental retardation," you should use the more socially acceptable "intellectual disability" or "cognitive disability." NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.
Tuesday, October 9, 2012
31 for 21 Day #9
Down Syndrome Creed
My face may be different
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace
-author unknown
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace
-author unknown
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