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to the Diagnosis: Down Syndrome
Syndrome is a chromosomal condition caused by the addition of a third copy of
the 21st chromosome. As such this syndrome is also known as Trisomy
21. Prior to birth, Down Syndrome can be tested for by amniocentesis, a process
of retrieving cells from the interior area of the uterus for the purpose of
not tested for prior to birth, Down Syndrome is sometimes suspected by
observable physical characteristics seen at delivery. A few recognizable
features can include flattened facial features, small ears and short curved
fingers. Genetic testing after delivery is the only way to confirm the
challenge facing the new parent is at times less taking care of and raising
their newborn, than coming to terms with a child who possesses a disability.
Understandably parents hope to have a fully healthy child. The disappointment
and fright of a child with a disability requires a psychological and emotional
adjustment. With respect to the fright, parents may have overwhelming concerns
and often even misperceptions as to what may be entailed for child and parent in
view of the determination.
Compounding the difficulty for some new parents in this situation is the belief that they are supposed to overlook the loss of the fantasy of the child that was expected. These parents may feel a pressure to adjust quicker than their own feelings permit. Thus parents are at risk of adding shame and embarrassment to the list of feelings they must overcome.
confirmation, what is needed most is support. The support provided must include
permission and a safe place to feel and discuss the loss of the fantasy of a
child without disability. The support must also include accurate information
regarding the nature of the condition and what life for child and family may
really mean in view of present or emergent problems.
and a safe place to express feelings is also known as emotional support. Family
or friends may offer this kind of support. However, the feelings and attitudes
of family and friends may interfere with the quality of support they may offer.
Hence, parents are advised to seek out and make use of local support groups
within their community. Upon confirmation, it is never too soon to get connected
to a local support group. Therein the parents can learn and discuss the myriad
of issues they face while at the same time have their feelings and fears
normalized such that they do not add shame and embarrassment or guilt to their
list of bad feelings.
support groups will help with one’s feelings and psychological adjustment,
attending presentations and meeting with healthcare service providers can
address the need for tangible information, particularly as it relates
specifically to your child’s needs. It is important to have a network of
professional helpers to advise and provide whatever service, medical or social,
to facilitate the care of the child as necessary.
parent must adjust, present siblings may need support to manage their parents’
upheaval. These children are most likely to have views on the matter that
parallel their parents. However, as parents adjust, so too do these children.
Siblings are known to grow up stronger, more determined and compassionate as a
result of their experience.
good starting point after receiving a determination of Down Syndrome is
contacting your local Down Syndrome Association. They offer both information and
support to parents and children. While it may be the information that draws a
people to the association, it is typically the friends that develop that provide
for lifetime connections.
In the USA: www.ndss.org
Direnfeld, MSW, RSW
Call Gary for your next conference and for expert opinion on family matters. Services include counselling, mediation, assessment, assessment critiques and workshops.
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