What parents are saying about why they need the specialized outreach provided only by the Connection and how the greater Down syndrome community could be more supportive:
"Having a place where people 'get' us is so important. We don't have much of a social life. Friends are rare. Finding other families like ours is a lifeline I can't afford to lose."
"I think a lot of people don't understand...either they don't believe the two can exist together or they just don't think about all the implications of having both. It's easier to connect with others who have similar experiences."
"My son is 8 and we have been unaware, really, of the impact that this dual diagnosis has had until now. I can't tell you how many "lights" have gone on in our minds to realize that so many of his behaviors/struggles are related to autism, rather than DS. We are thrilled to be able to begin to re-direct/re-focus our efforts to help and teach and encourage him!!"
"Since my daughter is not "typical" for Down syndrome, I shy away from the DS groups...they don't understand her behaviors and see her as a "problem" child. I completely understand, as their kids are quiet and socialize well...while my daughter is loud, rambunctious, and awkward socially. I actually feel embarrassed about my daughter's behaviors when in a group with just typical Down syndrome individuals (and sometimes find myself grieving that she has the added struggle of ASD)."
"My local DS moms group has been nice. I rejoice with their kid's accomplishments and try to grab their good techniques."
"I get a lot of well-intended advice from other ds moms that can be hurtful. . . 'Just be consistent and it will get better with time'... That sort of thing. I think it would help if other ds parents would offer more non-judgmental support and realize that my reality is very, very different from theirs."
"Sadly, I feel very uncomfortable around the people in DS groups. They are nice people and we have large organizations here but we just don't fit and most parents with typical DS kids kind of look like a deer in headlights when I try to explain my son. No one has been unkind, though. I do think they would do well to have some kind of information about autism in their literature so that families who have a DS diagnosis would know autism is also a possibility."
"Our DS group is fairly active. Before Autism, we did various things with them but then it got too difficult. The activities they have are usually too loud or involve too many people. I usually leave feeling much worse because my child is not like the other kids."
"I can't even go to any local meetings. The differences between my son and the other kids is just too painful."
"As I begin this journey, I'm so very grateful that there is a place that can encourage, support and understand us."
Providing Education, Support & Inspiration
for the Journey
"The autism makes things very different. It isn't poor discipline, bad parenting, lack of therapy, a bad school team, or lack of supplements. My daughter just runs a little differently, and that's ok."
"I'm so happy that I found you! I've needed you for 15 years!! I can hardly believe that I don't feel all alone anymore. I am truly so grateful. Thank you for starting this organization."