Living with Down syndrome: Families learn, bond after diagnosis

by Briana Wipf from The Great Falls Tribune:
Dinner at the Great Falls home of Jeff, Joan and Jared Redeen is always different, but Jared likes to know ahead of time what will be served.
On Friday evening, it was hamburgers, with a gluten-free bun for Jared. But Jared’s mother, Joan, said every breakfast and lunch are the same for her 22-year-old son.
Jared, who prefers a strict routine, has Down syndrome, the most common chromosomal defect resulting in mild to moderate intellectual disability. Down syndrome occurs in about one in every 691 births in the United States each year, according to the U.S. Centers for Disease Control and Prevention.
But for the Redeens, the abstract statistic is a reality for their family.
Jared is a kind man, dedicated to his family and work, who loves hip hop, pop and classic rock music.
Down syndrome, named after British physician John Langdon Down, who practiced in the mid-19th century and is credited for identifying and classifying common traits of the syndrome, is caused by a complete or partial duplication of chromosome 21. As a result, the individual has 47, instead of the usual 46, chromosomes in each cell in the body.

Attack the ill effects of the condition, not the people

from World Net Daily:

The foundation of this constitutional republic, as we used to be taught, is individual liberties – as in the Bill of Rights. Enter 25-year-old college student Melissa Reilly, brought to us by health news writer Kimberly Hayes Taylor in "Down syndrome's rewards touted as new (contrary) test looms" (msnbc.msn.com, Sept. 29):

"She travels to represent the Down syndrome community internationally, and is a Special Olympian who brings home gold medals in skiing, cycling and swimming. Additionally, she interns for a Massachusetts state senator and tutors pre-school students with Down syndrome in math and reading."

Darkly, the other "new (contrary) test looming" could greatly lower the future possibilities of more Melissa Reillys. As I previously reported, the new test will enable pregnant women to find out more quickly whether their child will have Down syndrome, and I expect nearly all of these women will abort the child. Right now, 92 percent of American mothers do just that.
The vital reality of having Melissa Reilly among us represents the experiences of other Down syndrome survivors in three recent surveys by doctors at Boston's prestigious Children's Hospital.

Author of the lead study, as Taylor reports, is Dr. Brian Skotko, a clinical fellow in genetics at Children's Hospital. It is his hope – and mine – that "the research on more than 3,000 Down syndrome patients and family members published in the October edition of the American Journal of Medical Genetics, will serve to better inform expectant parents and clinicians providing prenatal care" so that the other looming test will not condemn countless other Melissa Reillys to death.

If this is the first you are reading of what may well become this mass rescue of American lives, the indication is that much of our instant media has found other more titillating subjects on which to concentrate.

Skotko found "that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome, and 88 percent were convinced they were (themselves) better people because of their sibling with Down syndrome."

And dig this about a third study of how adults with Down syndrome feel about themselves: "99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked."

Testimony from Melissa Reilly: "I love my life 100 percent," she said, explaining that her brothers' and sister's friends are her friends, too, and she accompanies them on outings and vacations.

"I love my life for the things I do, and the places I go. We are one happy, loving family."

To be balanced, Taylor also interviewed Arthur Caplan, a professor of bioethics at the University of Pennsylvania. I know his work well. He and I both write for Free Inquiry magazine, and I also read his tough-minded, empirical work elsewhere.

Taylor writes that Caplan notes these Children's Hospital findings are limited by the fact that "families willing to document their experience in a survey tend to be those with a Down syndrome child on the healthier and more high-functioning end of the spectrum."

Taylor further writes that while Caplan acknowledges the study's "powerful data" and "important perspective," it may not "change people's minds."

That's why I am writing this column – to try to persuade as many as I can not to easily accept the common treatment of Down syndrome and condemn those diagnosed with it to death. How hopeful am I? I am not brimming with optimism. As Caplan reflects: "Even though society has learned more about what Down syndrome (Americans) can do, it still turns out that some prospective parents won't be willing to accept that story. 

"I'm not saying it's not important to tell that story or explore impact on families or what it can mean for the child themselves, but it may not have a huge impact in a society that's so obsessed with perfect children, competition, better performance and plastic surgery enhancement."

Still, Skotko concludes: "These results will be quite shocking to many Americans, who might have some misperceptions about what it means to have Down syndrome. Family members have spoken and have said life is positive with Down syndrome."

I now call upon Dr. Jerome Lejeune, discoverer of trisomy 21, the defective chromosome in Down syndrome. In The Lancet, one of the leading medical magazines in the world, he wrote on Jan. 5, 1980:

"The whole history of medicine is at hand to answer any ... death-doctor. Those who delivered humanity from plague and rabies were not those who burned the plague-stricken alive in their houses or suffocated rabid patients between mattresses. ... Victory against Down syndrome – curing children of the ill-effect of their genetic overdose – may not be too far off, if only the disease is attacked, not the babies" (my book, "Insisting on Life," Human Life Review, 2005).

Melissa Reilly was not attacked. She often travels around the country inspiring not only Down syndrome children and adults but also showing the rest of us that using death as a form of therapy for parents reveals what we are becoming as a people.

It's not too late for us to change.

adult Down syndrome center hosts new construction ceremony

from Trib Local Glenview:

Advocate Medical Group recently hosted a beam-signing celebration to mark the construction of a one-story medical office building on the southwest corner of the Advocate Lutheran General Hospital campus in Park Ridge, Ill. By hosting this ceremony, AMG honored the construction team for their quality work, the architects for their vision, and all of our associates, nurses, physicians, volunteers and patients who helped in the planning process and will occupy the building.

The building will be the new home of Advocate Medical Group’s Adult Down Syndrome Center (ADSC). It will include more exam rooms, a community center area and a number of special features to better accommodate the needs of individuals with Down syndrome and their families. Building completion is planned for the end of first quarter 2012.

Pictured at the event signing the beam that will become a permanent part of the building are (from left to right): Advocate Medical Group vice president of operations Cynthia Job, Advocate Medical Group president James Dan, M.D., and Advocate Medical Group’s chief medical officer Kevin McCune, M.D. Also in attendance were: physician leaders; patients; donors; staff; Mike Daly, chief of staff for Senator Dick Durbin; Illinois State Senator Dan Kotowski; and Illinois State Representative Elaine Nekritz.

Advocate Medical Group’s Adult Down Syndrome Center is the oldest and largest clinic of its kind in the nation. It provides a full range of services including primary medical care, nutrition counseling and psychosocial services to adolescents and adults with Down syndrome.

Advocate Medical Group is a physician-led medical group providing primary care, specialty services, medical imaging, outpatient services and community-based medical practices throughout Chicagoland and Central Illinois. One of the state’s largest medical groups with more than 800 primary and specialty care physicians in 90 locations, Advocate Medical Group is part of Advocate Health Care, one of the leading, integrated health care systems in the nation.

More information can be found at http://www.advocatehealth.com/ or by calling 1.800.3.ADVOCATE (1.800.323.8622).

More on Advocate Medical Group's Adult Down Syndrome Center:

Down Syndrome Study Finds Families Are Happy

from Disability Scoop:

Having a child with Down syndrome may come as a surprise, but it’s a good experience, families are reporting in a trio of new surveys.

Researchers surveyed more than 3,000 family members and people with the chromosomal disorder across the country for what’s believed to be one of the largest looks at life with Down syndrome. The findings, which will be published in three articles in the October issue of the American Journal of Medical Genetics, offer a rosy picture.

The vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability.

Nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life.

“As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome,” said Susan Levine from the disability nonprofit Family Resource Associates, who worked on the study alongside researchers at Children’s Hospital Boston and the Dana-Farber Cancer Institute. “And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable.”

Researchers did acknowledge that the survey population could be a slightly biased one since all respondents came from families that are members of nonprofit Down syndrome groups.

Nonetheless, they say the findings are valuable since they offer the “largest and most comprehensive portrait of life with Down syndrome to date.”

Mother of child with Down syndrome wants to educate and inspire

  from The Ridgefield Press:

Former Ridgefield resident and teacher Christine Wilson has a message for parents who may have Down syndrome child: There is hope, and there can be lots of laughter and love.

Ms. Wilson is the author of a book on Down syndrome, Faces of Hope — A Family Album, which was released earlier this year.

Its aim is to both educate and inspire parents and other family members of children affected by Down syndrome.

“The intent of Faces of Hope — A Family Album is to be a gentle and uplifting welcome to all families of children with Down syndrome,” Mrs. Wilson said. “A book that helps all family members learn to relax and enjoy the ride. A book for any person touched by a child with Down syndrome.”

The book is designed in the style of a photo album, each page displaying a black-and-white picture of a child with Down syndrome accompanied by a heart-felt quote by a close family member.

“The photos of this book are of life unscripted,” said Mrs. Wilson in the introduction of her book. “They are the real thing. Many families shared various quotations, with one being selected to be paired with the photograph of their loved one.”

She said the comments “share messages of hope, laughter and love.”

Down syndrome occurs when a person has three, rather than two copies of the 21st chromosome, Mrs. Wilson, adding that one in every 691 babies is born with the syndrome.

Right now, there are more than 400,000 people with Down syndrome living in the United States.

Mrs. Wilson, a parent of a child with Down syndrome, has dedicated herself not just through her book, but also personally helping to comfort and guide new parents of a child with Down syndrome.

The idea for her book was sparked by a phone call from a social worker at Danbury Hospital who knew that she had a son born with Down syndrome, and asked if she wouldn’t mind talking to a couple who had just been notified their child was born with the same condition. Mrs. Wilson was more than happy to help.

“The end result would be a book that could be shared by anyone touched by a child with Down syndrome — a simple offering to help dispel worry and bring hope during times of uncertainty,” said Mrs. Wilson.

Christine Wilson lived for many years in Ridgefield where her husband, Chip Wilson, grew up and graduated from Ridgefield High School in 1975. The couple has three children.

Mrs. Wilson worked as a special education teacher at both Ridgebury and Barlow Mountain Schools.

“Because of my experience, as a special education teacher and parent of a special needs child, I have been able to build a special trust and bond with other parents of children with Down syndrome,” Mrs. Wilson said.

She also noted that “4.1 million women will be offered prenatal testing in the first trimester, regardless of age. Ninety percent will choose to terminate their pregnancy when informed their baby has Down syndrome — before they are given any counseling or information on Down syndrome.”

“All people with Down syndrome experience cognitive delays,” she said, “but the effect is usually mild to moderate and not indicative of the many strengths and talents that each individual possesses.”

She added, “I am committed to sharing the good news about Down syndrome to any individual in order to help dispel any fear or anxiety related to hearing the diagnosis, ‘Your child has Down syndrome.’”

Faces of Hope is available at Books on the Common.

Two adoptive mothers honored by the Queen

from The Shuttle:

Two women from Bewdley, UK who set up a home and adopted four children with Down’s Syndrome attended one of the Queen’s garden parties in recognition of their work.

Heather Trew, 60 and Rosie Allen, 62 were surprised with letters inviting them to Buckingham Palace for their service to children and families. The pair have spent more than 35 years caring for the disabled children they created a home for.

The friends met while working as residential social workers at the former Barnardo's home in Spennells more than 35 years ago.

At the time, the charity had an advert in The Shuttle asking for a foster home for four-year-old Caroline who had Down syndrome.

When no one came forward, the friends felt it was their calling to help the little girl - even though it meant leaving their jobs and moving in together to be able to foster and later adopt her.

Miss Allen said: “I became a Christian while working at Barnardo's and we both felt we were led to do this. We were advised that we would not be able to adopt from Barnardo's while we were still working there so we left. In those days it was unusual for two women to adopt but it helped that they knew us and knew we were Christians.”

Miss Allen became a caterer at what was then The Elms and Miss Trew became a special needs teacher at Blakebrook School.

In 1981, while going through the adoption process with Caroline, who is now 39, they heard of baby Debbie, now 31 who was in need of a home and Miss Allen gave up work to become a full time mother.

Four years later, they welcomed Katie, now 27 into the family and Richard, now 24 joined them in 1988. All of the children’s names were changed by deed poll to Allen-Trew.

Miss Trew said: “Once we had done it for one you think there are other children out there so we ended up with four.”

She added: “I think Caroline would have spent her life in a children’s home and it wasn’t the right environment. I think all children deserve a family and although we are two women we have tried to create a family identity. Even though some have health problems and behavioural problems that’s part of family life and they have given us a lot more than we have given them.”

The mothers and their two eldest daughters attended a garden party at Buckingham Palace on Tuesday, July 12. They passed through state rooms before taking tea in the garden along with about 8,000 invited guests. After taking tea in a big tent they joined two long rows and the Queen and Prince Philip passed along one each.

Miss Trew said: “We were about six feet away from the Queen. She was in lemon and was on her feet for a good couple of hours talking to people in the Royal tea tent and in the line. It was remarkable stamina for a woman of 85.”

She added: “It was very moving. The girls found it fascinating. They realised it was a great honour. There were about 8,000 people there so it was a big affair but because they could nearly touch the Queen they were very excited.”

GiGi's Playhouse

What started as a local Playhouse in a suburb of Chicago has turned into an international phenomenon, spreading awareness and inspiration to everyone it touches. GiGi's Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community!

Programs and Activities:

1. Pre-Natal Diagnosis Support – GiGi's offers accurate and positive information about Down syndrome to families who have just received a pre-natal diagnosis.
2. Open Play – Promotes networking and socializing for families with children of all ages with Down syndrome.
3. Crawlers Program – Helps facilitate and strengthen the skills in children who are at the developmental stage of crawling.
4. Walkers Program – Facilitates and strengthens the skills in children who are beginning to walk.
5. 2 & Under Group – Promotes positive beginnings for families with an infant or toddler with Down syndrome, with a focus on ongoing support and networking for new and current families.
6. Hop, Skip and Jumpers (3-5) – Promotes friendships, social skills and interactive play through creative and educational activities for pre-school and kindergarten-aged children.
7. Playhouse Pals (6-8) – Promotes friendships, social skills and interactive play through structured and educational activities for children ages 6-8.
8. Kid's Club (9-12) – This face-paced program promotes friendships, social skills and communication through creative and educational activities for children ages 9-12.
9. Teen-Tastic – This group promotes friendships, social interaction and communication through a variety of social activities, outings and games for teens aged 13-17.
10. Friday Friends – This group promotes friendships, social interaction and communication through a variety of social activities, outings for adults 18 and over.
11. Daddy and Me – Promotes positive interactions and social networking between children with Down syndrome and their male role models
12. Sibling Time – (coming soon!) Organized group that offers a positive place to share about life with a sibling with Down syndrome.
13. Family Night – This program promotes positive beginnings for new families as well as offers with a focus on positive social interactions among peers and siblings
14. Leaps and Bounds - This contemporary dance class is fun for all ages!
15. Music Class – Each session explores a different aspect of music appreciation.
16. Hispanic Group (Nuestros Angeles) – Provides support, friendship, networking and socializing for Spanish-speaking families
17. Polish Group – Provides support, friendship, networking and socializing for Polish-speaking families
18. Literacy Program – This internationally renowned program teaches and reinforces children and adults with Down syndrome reading, comprehension and phonics skill.
19. Math Program – Students in this program are taught applicable math skills with custom made materials.
20. Skill Builders – Reinforcing school-aged skills, Skill Builders incorporates handwriting, math, social skill development and phonics.
21. Parties – Each Playhouse has parties for …just about anything! Halloween, birthdays, 4th of July, etc. Check your local website calendars!