In an effort to raise awareness and understanding of Down syndrome, Krista answered some questions about Down syndrome for visitors to her blog, One Beautiful Life. We will share two here and suggest you follow the link to her blog to see her other thoughtful answers. (We love her answer on how to explain Down syndrome to children.)
Claire asked: I guess what I want to ask is, how can I (and my family) support you and other families that have a child with DS? What can we do to help? How can we get involved in raising awareness?
And then Christine asked: What can we do to support families who have someone with DS? And are there unintentional things we might ask or say that are offensive or unsupportive?
Okay Claire and Christine, I am going to let you in on a little DS secret. When somebody says to me, “Oh, I knew someone with Down Syndrome and they were just so sweet and joyful.” (and it happens often) I diplomatically smile and nod but really I want to say, “That may or may not be true and quite frankly, I have bigger plans for my daughter than being sweet- that’s what tootsies rolls are for.” So how can you help? Treat people with DS with all the same respect and intellect that you would treat anyone else. They all may appear to have the same cover, but the book contents are completely different. Did you know that some individuals with DS are married, have jobs and live completely independent lives? Practically speaking, if you know a family with a child with DS, rest and understanding is huge. We are investing 24/7 like other parents but in much more intentional ways – surgeries, therapy, exercises, speech, ot, physio, the list goes on. Those around us need to know it is a major part of our lives and it isn’t going away so we need to talk about it….a lot and we need time to rest.
Financially speaking there are many ways. The CDSS acts as Canada’s number one voice for individuals with DS. They fight for inclusion, equal opportunities and advocacy. Local organizations like Ups and Downs, provide community and education to families in their areas, and an organization like PREP focuses on education, speech and occupational therapy for kids with DS. All of which need financial support. Another way, is Reece’s Rainbow. DS kids need families to love them! And give them the support they need, but most of these kids are institutionalized by the age of 4. You can sponsor a child, which adds to the grant available to the parents that adopt them. See their Angel Tree on the side of my blog.