Table 3.
Examples of descriptions of DS categorized by their rating on the 5-point scale used to assess degree of positivity or negativity.
| Rating of positivity or negativity | Example Description |
|---|---|
| “Your child will grow up, move out, have relationships, friends, a job, with/without support :).” - mother of a 6 year old daughter with DS | |
| Entirely positive | “I could not imagine life without my daughter. She has brought so much joy to our family and has taught us to be more accepting of others. We don’t know what the future will be for any of our children. Think positive and take things day by day.” - mother of a 10 year old daughter with DS |
| Mostly positive | “Very loving and forgiving - no pretenses or mind games. Varying stages of intellectual disability which you cannot tell until they mature. Generally happy-go-lucky, somewhat stubborn. Physical disability varies too.” - mother of a 17 year old daughter with DS |
| Balanced | “Varying degrees of mental abilities. Some Down syndrome are much lower functioning than others. Happy most of the time. As adults many live at home with aging parents. Some are capable of semi-independent living. Always learning throughout life.” - mother of a 24 year old daughter with DS |
| Mostly negative | “Your life will be changed forever but not always in a bad way. You will be challenged daily, the demands physically and emotionally will be huge. If you are dedicated to improving the quality of life for your child and are persistent, the rewards will be huge. It is so exhausting but so gratifying as well.” - mother of a nine year old son with DS: |
| Entirely negative | “I would want to tell them that the journey is filled with grief, is never-ending and the suffering for the whole family is insurmountable and my suggestion would be to terminate the pregnancy if they were given the choice, without a doubt.” (Emphasis made by participant.) - mother of a 21 year old son with DS ”It needs to be clear that this child is going to take all of their attention, time, and care, and that financially it will make it tough plus it is very necessary to have extended family support. There is a lot of personal care (e.g. changing diapers for 11 years); not a lot of free time to pursue any personal goals; health issues cropping up gradually, lack of speech abilities, a lot of false hope given by professionals, problems in the school system, not as easy as they say.” - mother of a 16 year old son with DS |