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" The GVDSS does not recommend or support various therapies, therapists, doctors, practitioners, etc. The only Board-approved partnership is with the Victoria Conservatory of Music for the Music therapy program. The GVDSS' mission is to be a support system for one another. It is left to individuals and families to determine the best services, therapies, doctors, and therapists for their particular needs and that fit their personal philosophies.
"


http://www.gdrc.org/uem
/qol-define.html
New or Prenatal Diagnosis

1) What is Down Syndrome

2) Parent to Parent Connections


What is Down syndrome?

from "Down syndrome, redefined"
www.cdss.ca
November 2003

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada. Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.

The sole characteristic shared by all persons with Down syndrome is the presence of extra genetic material associated with the 21st chromosome. The effects of that extra genetic material vary greatly from individual to individual. Persons with Down syndrome karyotypes may be predisposed to certain illnesses and medical conditions, but that genetic arrangement does not guarantee their development. The same illnesses and conditions are also present in the general population. Timely and accurate diagnosis and appropriate treatment of these illnesses and conditions improves both the length and quality of life, to the same extent as would be expected in the population without Down syndrome. Vigilance on the part of health care practitioners is required to identify and treat any of them if they arise. Conversely, studies have shown that people with Down syndrome have a statistically lower risk of developing certain other illnesses and medical conditions. That genetic arrangement does not guarantee that they will not develop.

Down syndrome commonly results in an effect on learning style, although the differences are highly variable and individualistic, just as in the physical characteristics or health concerns. The most significant challenge is to find the most effective, productive methods of teaching each individual. The identification of the best methods of teaching each particular child ideally begins soon after birth, through early intervention programs.

 


Parent-to-Parent Connections
If you are currently pregnant with a child who may have Down syndrome or if your child has recently been diagnosed with Down syndrome please contact us.

Our Family Support Facilitator can be reached by emailing info@gvdss.org

 

Whatever your experience, we have families willing to share their stories, experiences and knowledge with you by telephone, email, or in person. We come from many different backgrounds and from all walks of life. We will match you with an appropriate person or family who can answer your questions and help you to find up-to-date resources. Be assured that we will honour your confidence and treat your experience in a respectful, non-judgmental way.A wonderful resource for new or expecting parents is other parents.
And we've been there.


Our families have experienced:
 -prenatal diagnosis
 -unexpected diagnosis at birth
 -diagnosis of an older baby or child
 -TWINS!
 -making a decision about continuing a pregnancy
 -sharing the news with friends and family
 -health concerns and partnering with health professionals
 -various religious, cultural, and family contexts
 -excitement and joy
 -apprehension and anxiety
 -choosing an adoptive family for their child
 -choosing to be adoptive families
 -raising a child into adulthood
 -caring for an aging family member who has Down syndrome
 -having a sibling or grandchild with Down syndrome
 -having a child/youth or adult with multiple diagnosis


Medical professionals, social workers, and other community professionals are also invited to contact us for information packages and to assist in making family-to-family connections.


We recommend the Canadian Down Syndrome Society as a source for up-to-date information and resources.

 



Other ways the GVDSS can help
In addition to a home visit by our Family Support Facilitator and making Parent-to-parent connections, you can:

 -Request a parent package
 -Request access to the GVDSS resource library
 -Request a free GVDSS membership for that calendar year


Other resources:
 -Infant Development Program at Queen Alexandra for childrens' health
 -Canadian Down Syndrome Society (CDSS); click here www.cdss.ca

 

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