Raising A Down Syndrome Child: Parenting Tips

by Asha from BoldSky Limitless Living:
What should I do next? This is the common question that all parents face when their babies get diagnosed with Down syndrome. Parenting a child with Down syndrome is a bit difficult than what we imagine. Down syndrome is a chromosomal condition that results in an amalgamation of birth abnormalities. You have to manage various physical and mental problems while parenting a child with Down syndrome.
For some parents, a routine ultrasound scanning may suggest that you have to expect a baby with Down syndrome. But, for some others, everything will come as a bundle of surprise and shock along with the baby. Whatever it is, face the situation with confidence and hope. Parenting a child with Down syndrome is no more a difficult task with the advance in medical science. Toddlers are at the right age to get trained to acquire many skills that will help them live an almost normal life. Consider them as normal children who need a little more care and support from the parents.
IMPORTANCE OF AN ULTRA SOUND DURING PREGNANCY
Since the responsibility to implement some parenting tips for Down syndrome is completely on you, your task will become a little thornier. Here, we may discuss some easy and effective parenting tips for Down syndrome.

The simplest way to raise awareness about Down syndrome this holiday season

by Mark Leach from Down Syndrome Prenatal Testing:
In 2007, I attended my first ever National Down Syndrome Congress conference. Campbell Brasington, a genetic counselor from Charlotte, North Carolina, shared the simplest way to raise awareness about Down syndrome and engage in medical outreach. 
This is the time of year when many of us will be mailing out Christmas/Holiday/End-of-Year cards to our friends and family. Typically, these annual missives will include a photo of the family and, for some, a written update on the family’s activities. Brasington made the following simple suggestion for families to raise awareness about Down syndrome:

Include your obstetrician on your holiday card mailing list.

She explained that for many OBs, their experience with individuals with Down syndrome is the relatively brief moment of when they deliver a child with Down syndrome. If you have a child with Down syndrome, you can show how this child your OB delivered is growing up and what your child is doing. You can provide your OB a glimpse of what a life with Down syndrome can be like.
This simple tip isn’t limited just to OBs, but it would be good to at least start there. Parents could also consider adding the labor and delivery department of the hospital where their child was born, as well as the medical professionals who provided prenatal care, like genetic counselors, geneticists, and maternal-fetal medicine specialists.
This year, a group of active moms launched a social media campaign to encourage families to follow this simple awareness raising tip. I have graciously been credited with this idea, but Campbell Brasington is who deserves the recognition as the originator of this great, easy idea.
And, also, this year, Lettercase, the publisher of materials through the National Center for Prenatal & Postnatal Down Syndrome Resources (where I serve as the bioethics specialist), is offering a great deal:

This year, please consider sending a Holiday card to your medical provider that includes a photo of your loved one with Down syndrome. From #GivingTuesday to Friday, December 6, anyone who makes a $15 donation to the National Center for Prenatal and Postnatal Down Syndrome Resources will receive a Medical Provider Holiday Gift Pack that includes “Understanding a Down Syndrome Diagnosis,” “Delivering a Down Syndrome Diagnosis,” our new testing pamphlet, and 5 National Center postcards.

If you missed it, today is the last day for this great deal. This gift pack is for anyone who cares about their local obstetricians having the medically-reviewed and recommended materials to be provided patients receiving a prenatal test result for Down syndrome. You can make a $15 donation to the National Center to get this gift pack at this link.
If you have a loved one with Down syndrome, I hope you will follow through with this simple tip of including your OB on your family’s holiday card list. If families did this each year, it would provide examples of what a life with Down syndrome can be like for the OB and other health care providers to share with their patients when they first deliver the diagnosis. Who knows: your family’s photo may be the one shown to a new or expectant mom to say, “well, this is how one of the families whose child I delivered is doing.”

disability living allowance for Arthur and not for Alfie

from the Lancashire Evening Post:
The 10-months-old brothers, who have identical medical problems and need the same round-the-clock care, became instant TV and newspaper stars after their plight was featured in yesterday’s LEP.
Yet despite all the press attention, officials at the Department of Work and Pensions were showing no signs of budging over their payment of disability living allowance for Arthur and not for Alfie.
“We haven’t heard a word from them yet,” said dad David. “They must know this case is ridiculous. All we are asking for is a bit of fairness.”
The national media descended on the Banks-Lowe household when the story of the twins’ case hit the newstands near their home in Wesham near Kirkham.
David admitted: “I had to come home from work in the afternoon because there were so many press here knocking on the door.
“It has gone totally crazy. The story on Facebook had something like 51,000 shares within a matter of hours.
“The benefits issue is quite a hot one at the moment with all the rejigging that has been going on. And then a ridiculous case like this comes along and it obviously caught the media’s attention.
“No-one we have spoken to can quite believe what has happened with Arthur and Alfie.”
The boys were born one minute apart and have exactly the same medical issues and care needs. They have daily physio sessions, attend hospitals and clinics regularly for heart, lung and eye problems and their breathing has to be monitored during the night.
Yet one officer at the benefits department at Warbreck House in Blackpool judged Alfie did not need any more care than other children of his age. Meanwhile an identical application for his twin Arthur was granted without question.
“It’s worrying for other people applying for this allowance because it shouldn’t be a lottery who you get to deal with your case.”
A spokesman for the disabled charity Scope said: “Parents tell us they have to fight battle after battle to get the right support for their children. But this is one of the worst examples we’ve heard.
“Everyday life costs more if you’ve got a disabled child. In the current climate that makes disability living allowance a real life-line.
“How can it be right that of two identical twins living in the same household, one is eligible for DLA and the other is not? This suggests that the system is a complete lottery, which depends on who is assessing your application.”

Make World Down Syndrome Day a Day of Action

by Jen Logan of Down Wit Dat:

Thursday (3/21) is World Down Syndrome Day.  It is a day of celebration and of recognition.  It is also a day of global awareness.

Honestly, I've about had it with awareness.  I'm done, finished.  Most people are aware of Down syndrome by now.  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.  But, they know it exists.  Instead of having yet another day of awareness, I'd like to make World Down Syndrome Day one of remembrance and action.

Several things have weighed on me in the last little while.  The first is a doll, made by a mother of a 13 year old girl with Down syndrome.  They are called "Dolls for Downs" [spelled incorrectly].  The idea here is that "every child wants a doll that looks like themselves." 

I don't agree and furthermore, I am uncomfortable with these dolls in principle.

Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same.  They don't.  My son looks like the rest of my kids;  an amalgam of mine and my husband's family.  He does not look like these dolls any more than any other child with DS that I know personally.  I find the description of "pudgy features" in the video to be extremely offensive.

Additionally, like the bald barbie debate for pediatric cancer patients, I'm going to take the stance that my son does not need this doll.  He does not need another feel good, "isn't that cute!", soft focus awareness campaign (which is what this doll will surely turn into).  He needs a medical profession who gives a damn.  He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions.  He does not need a doll whose proceeds line a private pocket, like most "awareness" paraphernalia does.

Gobal Down Syndrome Foundation 2012 Be Beautiful Be Yourself Raises $1.5 Million, Honors Jamie Foxx and Luke Zimmerman

Quincy Jones, Natasha Bedingfield Star at Benefit for Linda Crnic Institute for Down Syndrome
from Herald Online:
Over $1.5 million was raised at the Global Down Syndrome Foundation’s 2012 Be Beautiful Be Yourself Fashion Show on Saturday, Oct. 13, at the Sheraton Downtown Denver Hotel to benefit the Linda Crnic Institute for Down Syndrome. The gala was sold out, with 1,200 people in attendance, including football legends Pat and Annabel Bowlen, and John and Paige Elway.This year, the annual event honored Academy Award-winning actor Jamie Foxx and “The Secret Life of the American Teenager” TV star Luke Zimmerman with the 2012 Quincy Jones Exceptional Advocacy Awards. Quincy Jones, the organization’s International Spokesman, presented the award to Foxx, while Foxx’s sister, DeOndra Dixon, who is the foundation’s 2011 Ambassador, presented the award to Zimmerman.The Be Beautiful Be Yourself Fashion Show featured the foundation’s 2012 Ambassador, 6-year-old Samantha Marcia Stevens of Massachusetts, as well as 29 other guest models who happen to have Down syndrome. They strutted the runway with celebrity escorts, including actress Virginia Williams, Denver Nuggets star players Andre Iguodala and Danilo Gallinari, and Colorado Rapids forward Conor Casey. Kim Christiansen of 9News was the evening’s emcee.British singer-songwriter Natasha Bedingfield closed out the evening with a concert that featured dancing help from the models during her chart-topping hit “Unwritten.”The event’s live auction raised $210,000, with such exclusive offerings as Hyde Park Jewelers’ Kentucky Derby VIP package, an Indianapolis 500 experience with Buzz Calkins, and a dinner with Denver Broncos icons Pat and Annabel Bowlen, and John and Paige Elway.The money raised at the Be Beautiful Be Yourself Fashion Show provides crucial funding for research, medical care, education and advocacy benefiting people with Down syndrome. Because Down syndrome is the least-funded genetic condition by the National Institutes of Health, the research and care provided by the Linda Crnic Institute at the Anschutz Medical Campus in Aurora, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado rely heavily on private funding.The Be Beautiful Be Yourself Fashion Show is the single largest annual fundraiser benefiting people with Down syndrome.More information about this event and the Global Down Syndrome Foundation is available at www.globaldownsyndrome.org.

About the Global Down Syndrome Foundation.
The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the US committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show - the single largest annual fundraiser benefiting people with Down syndrome. Programmatically the Foundation organizes and funds many programs and conferences including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus in Aurora, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado. It partners both locally and globally to provide life-changing research and medical care for individuals with Down syndrome. The Crnic Institute is made possible by the generous support of the Anna and John J. Sie Foundation, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness and government advocacy. It is a research and medical-based organization without political or religious affiliation or intention.

Read more here: http://www.heraldonline.com/2012/10/16/4341081/global-down-syndrome-foundation.html#storylink=cpy