Down syndrome

Down syndrome
Named after John Langdon Down, the first physician to identify the syndrome, Down syndrome is the most frequent genetic cause of mild to moderate mental retardation and associated medical problems and occurs in one out of 800 live births, in all races and economic groups. Down syndrome is a chromosomal disorder caused by an error in cell division that results in the presence of an additional third chromosome 21 or "trisomy 21."

Babies with Down syndrome often have hypotonia, or poor muscle tone. Because they have a reduced muscle tone and a protruding tongue, feeding babies with Down syndrome usually takes longer. Mothers breast-feeding infants with Down syndrome should seek advice from an expert on breast feeding to make sure the baby is getting sufficient nutrition.

Hypotonia may affect the muscles of the digestive system, in which case constipation may be a problem. Atlantoaxial instability, a malformation of the upper part of the spine located under the base of the skull, is present in some individuals with Down syndrome. This condition can cause spinal cord compression if it is not treated properly.

Medical care for infants with Down syndrome should include the same well-baby care that other children receive during the first years of life, as well as attention to some problems that are more common in children with Down syndrome. If heart, digestive, orthopedic or other medical conditions were identified during the neonatal period, these problems should continue to be monitored.

Children with Down syndrome may be developmentally delayed. A child with Down syndrome is often slow to turn over, sit, stand, and respond. This may be related to the child's poor muscle tone. Development of speech and language abilities may take longer than expected and may not occur as fully as parents would like. However, children with Down syndrome do develop the communication skills they need.

Parents of other children with Down syndrome are often valuable sources of information and support. Parents should keep in mind that children with Down syndrome have a wide range of abilities and talents, and each child develops at his or her own particular pace. It may take children with Down syndrome longer than other children to reach develop mental milestones, but many of these milestones will eventually be met. Parents should make a concerted effort not to compare the developmental progress of a child with Down syndrome to the progress of other siblings or even to other children with Down syndrome.




Questions and Answers about Down Syndrome


Is Down syndrome a rare genetic disorder?
Down syndrome occurs in 1 in 800 births.

Do only older women give birth to babies with Down syndrome?
Researchers have established that the likelihood that a reproductive cell will contain an extra copy of chromosome 21 increases dramatically as a woman ages. Therefore, an older mother is more likely than a younger mother to have a baby with Down syndrome, but older mothers account for only about 9% of all live births each year and 25% of Down syndrome births.

Are all people with Down syndrome severely retarded?
Most people with Down syndrome have IQ's that fall in the mild to moderate range of retardation. Some are so mildly affected that they live independently and are gainfully employed.

Can people with Down syndrome receive proper care at home?
Home-based care and community living give them the opportunity to socialize and benefit from such interactions.

Should all children with Down syndrome be placed in special education classrooms?
While federal laws have been established to insure that all handicapped children have access to public education, children with Down syndrome can and have been included into a regular classroom.

Is there a cure for Down syndrome?
Researchers have identified the genes that cause the characteristics of Down syndrome and are working to further develop mouse models, at varying stages of development, in order to enhance their basic understanding of Down syndrome and facilitate the development of effective interventions and treatment strategies.

Please contact us today if you wish to adopt a child with Down Syndrome

The Association For Children with Down Syndrome

URL: acds.org
Email: msmith@acds.org
ACDS is dedicated to providing lifetime resources of exceptional quality, innovation and inclusion for individuals with Down syndrome and other developmental disabilities and their families!


DownSyndrome.com

URL: www.downsyndrome.com
The goal at DownSyndrome.com is to advance the understanding, research and acceptance of and for people with Down Syndrome. There are many fantastic organizations Worldwide that help forward understanding and possibilities loved ones who have a little extra something special. DownSyndrome.com will expand on the work these groups do by providing an interactive platform that compiles information and allows interested individuals to share and participate with their own experiences and questions.


Down Syndrome Research and Treatment Foundation

URL: www.dsrtf.org
Email: dsrtf@dsrtf.org
The mission of DSRTF is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down syndrome.


Down Syndrome Research Foundation

URL: www.dsrf.org
The Down Syndrome Research Foundation was formed in 1995 in response to the need, expressed by parents and professionals, for detailed and research-based information for themselves and for the community at large. Although based in British Columbia, the DSRF, by using technology to reach out to the Community, has found an audience across Canada.


National Down Syndrome Congress

URL: www.ndsccenter.org
Email: info@ndsccenter.org
The NDSC works to empower its members and all people with Down syndrome by creating a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.


National Down Syndrome Society

URL: www1.ndss.org
Email: info@ndss.org
The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome.



Reece's Rainbow

URL: www.reecesrainbow.org
Email: bamaroberts@comcast.net
Reece's Rainbow promotes the international adoption and rescue of children with Down syndrome exclusively. We are a 501(c)3 registered charity, and raise funds as adoption grants so families can afford to save our angels from mental institutions. We have close to (150) children with Down syndrome waiting in (24) countries worldwide. All of these children are in need of grant donations and adoptive families. We also have many advocacy and outreach projects you can help with as well. We also advocate for children with other special needs, known as our "Other Angels". We have found families for (90) children with DS and other special needs in only two years! Your help in raising awareness and grant donations is so greatly appreciated!

College campus for a person with Down syndrome

December 29, 2009

Here's one reason Micah Fialka-Feldman wants to live on his college campus,
instead of remaining at home with his parents: To get to college in the
morning, he takes the public bus near his home, then transfers to a second
bus. The trip takes about two hours.

Fialka-Feldman, 24, attends classes at Oakland University, as part of a
program for students like him, with intellectual disabilities. The campus is
about 20 miles from where he lives with his parents in Huntington Woods,
Mich.

A few years ago, Fialka-Feldman helped his younger sister Emma move into her
dorm room when she went off to college at Mount Holyoke. It gave him another
reason to want to live on campus: He thought he was missing out on an
important part of college life. But his school said because he was in a
special program and not a full-time student, he couldn't live on campus.

So Micah sued.

Early yesterday morning, his cell phone rang. It was his lawyer with the
news: He had won. "I'm happy and I'm proud," say Fialka-Feldman.

A U.S. District Court judge in Michigan ruled that Oakland University had
discriminated against Fialka-Feldman. The new school term starts Tuesday.
And Fialka-Feldman says he hopes to move into his new dorm room by Sunday.
He's got his computer, his radio and his bedding ready. He's got the posters
he wants to put on the wall, including ones with quotes from civil rights
leaders. One says: "A community that excludes one member is not a community
at all."

To live on campus, he says, "means I would have the full college life and
... I could go to Friday night things in the dorm, like Friday night
activities like a film night or like a basketball game and going out with
friends."

His father, Rich Feldman, adds: "The judge's decision is a wonderful victory
for Micah's dream to live in the dorm and a victory for so many other
students and folks with cognitive disabilities. Now it's their right to be
fully included in the college dormitory experience."

A spokesman for the university said officials there have not had time to
evaluate the decision. The school can appeal.

It's pretty common these days for kids with intellectual disabilities like
Down syndrome to go to their neighborhood schools and to be mainstreamed
with all the other kids. And when these disabled students finish high
school, they often want to go to college. In recent years, scores of
community colleges and universities have opened special programs and invited
students with intellectual disabilities to enroll. Oakland University has
been a pioneer in opening up to these students. But the colleges can't
always keep up with the rising expectations of disabled students and their
parents.

Fialka-Feldman takes regular classes, and students act as tutors to help him
follow along in class and keep up with his homework.

He has taken classes at Oakland since 2003 and the new term will be his last
on campus. "I'm taking a class on public speaking. And a class on
persuasion," he says.

He's already been pretty good at persuasion. In the course of fighting this
case, he has spoken twice to the school's board of trustees, and he pressed
his case in court. The university's study government voted to support
Fialka-Feldman's right to live on campus, and the student body president,
Kristin Dayag, was at his side at his court hearing earlier this month.

"Micah has really found his voice," says his mother, Janice Fialka. She
remembers when Micah was 2 or 3, and still didn't speak. "I remember vividly
asking the speech therapist, do you think that Micah will ever talk. And she
hesitated. And that hesitation, which was probably only four seconds, felt
like a lifetime," says Fialka, a social worker who now is a speaker on
disability issues. "And basically she was saying, 'We don't know.' And now
he's speaking in front of all kinds of people. So this is quite a journey of
surprise, and the importance of believing that every person has a gift and
should be supported in their dreams."

A generation ago, parents couldn't dream for their kids with disabilities.
Before the 1975 special education law, public schools weren't even required
to teach them - and about 1 million then didn't get any education at all.

Even today, lots of these kids aren't capable of going to college - and for
many of them the future remains bleak.

But Paul Marchand, with the advocacy group The Arc, says parents now have
higher expectations. "Parents want the best for their kids. They want their
kids to get a job; they want their kids to be as independent as possible.
They want society to accept them. They want their kids to be as typical as
all the other kids of their age, including going to a college."

Last year, Congress passed legislation that for the first time makes it
possible for people with intellectual disabilities to get federal college
loans - even if they're not in a full-time program.