Table 4.

Recommendations from Parents for Genetic Counseling for DS

Parental Suggestion	Frequency of Suggestion	Quote(s)
Emphasize similarities between people with DS and people without DS, as well as between parenting a child with DS and a child without DS	34	“D.S. people have different skills + abilities just like ‘ordinary’ people.” – mother of a 21 year old daughter with DS “I am a believer that all children have some level of disability my child’s just has a name.” – mother of a 15 year old daughter with DS “To me D.S. is not the issue. The extreme health issues are. A ‘NORMAL’ child can be born with major health issues, including cancers, brain defects, hearing loss that can not be detected through screening.” - mother of a 17 year old son with DS “As I read once, the news that your child has DS is like the death of your child because all the dreams and plans you had are over. That is only partially true, yes your “typical” child is dead but your dreams and plans are the same, (health, happiness, friends, success...) You just have to let go of the plans you had for your ‘typical’ child and have them for your DS child.” - father of a four year old daughter with DS “Like the Poem - Something like “Holland instead of Italy” It’s not the trip you planned but it is great just the same.” – father of an 8 year old son with DS
Use a variety of methods for describing children with DS, including suggesting contact with families with a member who has DS	22	“Balanced, honest representation of possibilities and issues: medical issues, stats, success stories, pictures.” – mother of a 3 year old son with DS “it might be good to have a video of different levels of what D.S. looks like. There is a great deal of variety in the amount an individual is affected by D.S. and parents who have little knowledge deserve to have a clearer picture than what words can convey.” - mother of a 5 year old daughter with DS (diagnosis made prenatally) “A video could be made showing many different DS people at different age levels, in different activities, with family and in the community. Included in the video could be a scientific description and the possible health issues that can sometimes go along with D.S. Also several parent statements of the challenges and the rewards.” – mother of an 18 year old daughter with DS ”They should get to know families who have a D.S. member to get a more realistic view of life in general.” – mother of a 17 year old son with DS
Emphasize the normal curve and describe the range of severity of DS, rather than focusing only on extreme examples	18	“That those with DS IQ fall into the normal bell curve with some quite mentally handicapped and some almost of our IQ, but most are mildly mentally handicapped - thus can learn, go to regular school, learn skills for daily living, work, have a social life and marry if they choose.” – mother of a 29 year old son with DS ”Provide range of probabilities of the severity of different medical issues & intellectual disabilities if asked by the couple.” – mother of a 5 year old son with DS
Ensure that information provided is up-to-date	9	“A short, simple booklet that is current and has pictures would be helpful. We were given an outdated book when our son was born” – mother of a 28 year old son with DS ”If the information is accurate and not negative. I hear from lots of parents news or info they get is all so negative. There is a lot to be positive about and parents need accurate information and lots of support.” – mother of a 6 year old daughter with DS
Mention that adoption is an option	6	“I think that you should also make them aware that adoption is an option.” – mother of a 21 year old daughter with DS “I think we must keep in mind that this is not for everyone but there are options like adoption there.” – mother of a 6 year old daughter with DS
Do not use inappropriate language or terminology	4	“Do not use words that attach judgment or inappropriate language.” - father of a 7 year old daughter with DS
Acknowledge that grieving is normal	4	“Be made aware early that it is a legitimate grieving process to go through and not to feel guilty.” – mother of a 5 month old son with DS (diagnosis made prenatally) ”I would start by reading to them and giving them a copy of “Welcome to Holland” by Emily Kingsley. – mother of a 23 year old daughter with DS
Ask parents up front for questions	1	“Ask first “What questions do you have?” You may be surprised what their concerns are.” – mother of a 6 year old daughter with DS
Limit amount of information provided at the time of diagnosis	1	“do not send a package home with a new parent (as I received) that outlines everything under the sun that will likely go wrong with your child. Give the package that discusses pros and cons and keep it limited. You don’t need to discuss health issues at 50 years of age.” – mother of a 7 year old son with DS