You´ll find a lot of sources dealing with experiences of families
having children with Down Syndrome on the internet. Many of these
reports are very encouraging and show that the children can lead a
much better life than one might think at first sight. A lot of them
are happy and satisfied despite the handicap of their children.
In Germany we´ve got a wonderful example of a young man with down
syndrome who has become an actor and plays excellent roles in
TV-films.
Maybe we could see him as a pattern what can be reached although
having a Down Syndrome.
Bobby Brederlow´s homepage (German)
(http://www.bobby.de/ )
Now three parts of your question:
a) dealing with the trauma
The best thing might be having a look at experiences other families
have made. Most of them have rather optimistic views about the
problem and have found broad support.
Marcia Van Riper of the Ohio State University published the paper
"Living with Down Syndrome: The Family Experience" which provides very
useful background information. She says:
"Our current understanding of well-being in families of children with
Down syndrome is rather limited. What we do know is that these family
experience increased stress, increased time demands, and changes in
roles. It remains unclear why some families recover or adapt in the
face of stressful circumstances, while others remain vulnerable, and
some deteriorate. Future research needs to shift the focus from
assessing stress and distress, to assessing resilience and adaptation.
We have growing evidence that many families of children with Down
syndrome are doing very well. What we need now is an understanding of
the factors that contribute to resilience and successful adaptation."
and
"The purpose of this paper is twofold: (a) to present the key findings
from this investigator's program of research concerning well-being in
families that include a child with Down syndrome and (b) to compare
these findings with the published findings from other investigators.
It is hoped that this overview of research findings concerning
well-being in families of Down syndrome will be help to decrease some
of uncertainty experienced by families and professionals following
awareness of an infant's diagnosis of Down syndrome. In addition, it
is hoped that an awareness of what we know about well-being in
families of children with Down syndrome, as well as an awareness of
the gaps that exist in our current understanding, will stimulate
further research in this area."
There´s an interesting quote from parents in this paper:
"Our entire family and marriage is stronger. It has changed our view
of the world, our view of ourselves, and others. It has made use more
giving and less selfish. It has drawn us closer to God. It has caused
us to be more concerned about others who are different. It has shown
us what we value in life --- relationships ---- not power and wealth.
It has made us more content to just be!"
All quoted from:
Reprinted from Down Syndrome Quarterly, Volume 4, Number 1, March,
1999
( http://www.denison.edu/dsq/vanriper.shtml )
You´ll find more useful articles at the same website:
Comprehensive Speech and Language Intervention for School-Aged
Children with Down Syndrome
( http://www.denison.edu/dsq/kumin.shtml )
The Down Syndrome Educational Trust provides well written and sorted
information about several aspects on their website. The Trust:
"publishes practical information about Down syndrome organizes
conferences and workshops provides advice and consultancy services"
To me this page seems to be one of the most important information
sources you can find on the internet.
Down Syndrome Educational Trust
(http://www.downsed.org/ )
Another parents group that provides information:
"All of us have lived through moments of doubt and of the rewarding
gratification of having at home a child with Down syndrome. We have
learned that they are persons with an interior world that is very
intense and marvelous, rather than causing us any trouble, they have
enriched our lives with their special way of being. We also learned
that they have an amazing capacity to adapt themselves and learn.
There is much we can do to help them to integrate with the community
and it's norms."
DOWN SYNDROME FOUNDATION
( http://www.honduras.com/fdown/ )
b) acquisition of knowledge pertinent to Down Syndrome
There are almost endless sources on the internet dealing with
information and facts about the down syndrome. Selecting sources
meeting your special needs is rather difficult here because of that
enormous amount of pages.
You´ll find huge list of down syndrome clinics in the USA under the
following link. All necessary contact information is provided there to
ask the experts if you have any special questions:
List of down syndrome clinics
( http://www.ds-health.com/clinics.htm )
All these FAQ´s on the Down Syndrome are answered under the following
link:
"What Is Down Syndrome?
What Causes Down Syndrome?
Do Children With Down Syndrome Have Special Health Problems?
Can Down Syndrome Be Cured or Prevented?
How Serious Is the Mental Retardation?
What Can a Child With Down Syndrome Do?
Can a Child With Down Syndrome Go to School?
What Does a Child With Down Syndrome Look Like?
Who Has the Greatest Risk of Having a Baby With Down Syndrome?
Can Down Syndrome Be Diagnosed Before the Child Is Born?
What Is the Risk of Parents of a Child With Down Syndrome Having
Another Affected Child?
Can People With Down Syndrome Marry?
Is the March of Dimes Conducting Research on Down Syndrome?
Where Can Families Affected by Down Syndrome Get Additional
Information?"
from:
Down Syndrome Public Health Education Information Sheet
(http://www.noah-health.org/english/pregnancy/march_of_dimes/birth_defects/downsynd.html
)
Further information, definition, incidents and characteristics:
Down Syndrome Facts Sheet
(http://www.nichcy.org/pubs/factshe/fs4txt.htm )
Online discussion groups with the Down Syndrome as the subject that
will help:
( http://www.familyvillage.wisc.edu/lists/downsyn.htm )
More and detailed information ( e.g.: "What health concerns are often
observed in people with Down syndrome?") at:
( http://thearc.org/faqs/down.html )
General health care information by another expert:
HEALTH CARE GUIDELINES FOR INDIVIDUALS WITH DOWN SYNDROME
( http://www.denison.edu/dsq/health96.html )
c) developing skills for effective day-to-day living
There are many pages practical giving tips here
Some examples:
"Caring for a Child with Down Syndrome
How will I take care of my baby with Down syndrome?
Just like any other newborn, your baby will need to be fed, dressed,
diapered, cuddled, held, talked to, played with and loved. However,
your baby will probably have some health problems that will require
some extra care.
What are the health problems that might affect my baby?
Most babies with Down syndrome don't have good muscle tone. This makes
it harder for them to learn to roll over, to sit up and to walk.
Physical therapy can help with these problems.
There's a chance that your baby may have some kind of heart defect--a
little less than half of these babies have a heart problem. An
ultrasound exam of your baby's heart will show if there's a problem.
Surgery can fix the heart problems of Down syndrome.
Some babies with Down syndrome have problems swallowing, or they may
have blockages in their stomach or intestines (bowels). Surgery can
fix these problems. Once they are fixed, they usually cause no further
harm.
Some babies have eye problems, like cataracts (cloudy lenses) or
crossed eyes. Surgery can help these problems, too.
Children with Down syndrome may have colds, ear infections and sinus
infections more often than other children. They are more likely to
have thyroid problems, hearing loss, seizures, and bone and joint
problems. It's also common for these children to be late in teething.
Will my child have learning problems?
Intelligence ranges from low normal to very retarded (slow to learn)
in people with Down syndrome. If you can keep your child physically
healthy, he or she will be better able to learn. At birth, it isn't
possible to tell yet how smart a baby with Down syndrome will be. Many
adults with Down syndrome have jobs and live independently.
What other special care will my baby need?
You may need to give your baby medicine for a heart defect or some
other medical problem. Your doctor will probably want to check your
baby more often to be sure that he or she is growing well and isn't
developing problems from birth defects.
Your baby may need to have physical therapy every week to help with
building up muscle tone and coordination. Later on, speech therapy and
occupational therapy (to help with hand coordination) may be helpful
for your child.
Can I breast feed my baby?
Yes, babies with Down syndrome can breast feed. Breast feeding is good
for babies with Down syndrome. Your baby may be a little slow in
learning how to breast feed.
You may find it helpful to talk with your doctor or a nurse, or a
therapist with special training when your baby is learning to breast
feed. Other mothers who have breast-fed their babies with Down
syndrome can also give you helpful advice. Your doctor can help you
find other mothers to talk to."
From:
Caring for a child with down syndrome
( http://www.aafp.org/afp/990115ap/990115e.html )
Another useful guide for dealing with everyday problems can be found
here:
New Parents
( http://www.dsa-uk.com/Literature/Newparents/pg01.htm )
Experience with the toilet problems by a father of a down syndrom
child who´s an education specialist
"Toilet Training Made Semi-Easy by Kent Moreno
Note: Kent Moreno is a Behavior Analyst and father of a child with
Down syndrome. He is employed by the West Virginia Austism Training
Center at Marshall University as an education specialist. He can be
reached at kent_moreno@wvwise.org.)"
( http://www.ds-health.com/train.htm )
Useful tips about "Bringing up children with Down Syndrome Summary:
Facts about Down Syndrome. How early education helps. Where parents
can find support."
( http://www.mhcs.health.nsw.gov.au/health-public-affairs/mhcs/publications/3370.html
)
Further contacts that might be helpful in General:
A huge resources site listing by categories more info on DS:
NADS
( http://www.nads.org/resources_links.htm )
"National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, GA 30338
(800) 232-6372; (770) 604-9500
E-mail: ndsccenter@aol.com
Web address: www.ndsccenter.org
National Down Syndrome Society
666 Broadway, 8th Floor
New York, NY 10012
(212) 460-9330
(1-800) 221-4602 (Toll Free)
E-mail: info@ndss.org
Web address: www.ndss.org
The Arc (formerly the Association for Retarded Citizens of the United
States)
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
(301) 565-3842
E-mail: Info@thearc.org
Web address: www.thearc.org
For publications: www.TheArcPub.com"
from:
( http://www.nichcy.org/pubs/factshe/fs4txt.htm )
At last let me give you a personal impression what I myself see as a
very important point. I´ve got close contacts to disabled persons
including ones with DS. I regularly visit concerts with them as we
like the same music. My most important experience is NOT to treat them
as if they were disabled. Talk with them like you´d talk to any
other friend who is "normal".
I hope that that I´ve found the information you´re looking for. In
case you might want some more backgrounds feel free to post a
clarification request.
till-ga
Search strategy:
A lot of pages around the subject can be found at yahoo.com. See at
Yahoo Catalogue
( http://dir.yahoo.com/Health/diseases_and_conditions/down_syndrome/ )
Experience of families with down syndrome children
( ://www.google.de/search?sourceid=navclient&hl=de&querytime=y64xwB&q=down+syndrome+family+experience
)
Impact on families:
( ://www.google.de/search?sourceid=navclient&hl=de&q=impact+family+down+syndrome
) |
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