We have dealt with a few of these; Elina had heart defects and crossed eyes. There are also a lot of odd things that are associated with d.s., like constipation or ear infections.
Okay, I can believe the increased risks and the quirky problems due to everything being smaller (like nose passages and ear ducts). What is hard to believe are some of the things I have heard lately about Elina's personality. It seems that so often when I note a characteristics or trait, someone chimes in with "that is common with down syndrome."
Maybe I am oversensitive (wouldn't be the first time). How can it be that because my child has down syndrome, all her personality traits become part of that diagnosis?
Happiness? Oh, kids with down syndrome are all so happy. Stubbornness? That too (they are so gosh darn stubborn about being happy, I guess). Extroverted? Down syndrome babies are all social.
Is there a down syndrome personality?
Is there a down syndrome personality?
Can Elina be stubborn because maybe both her parents have that tendency? Can she be who she is without being pigeonholed into a "down syndrome personality" stereotype? I want to be able to talk about my daughter without feeling like she is being labeled (even if the labels are not negative). She is not down syndrome, she has down syndrome.
Fifty years ago, many people with down syndrome were living largely in mental institutions. It has only been more recently that we as a society have begun to accept and acknowledge these individuals. So, it is natural that we have a lot to learn about Trisomy 21 and those who have an extra chromosome. I pray that in time we as a society begin to see down syndrome as a medical condition rather than a label that defines and encompasses an individual.
So true!
ReplyDeleteThe actions of society scares me more than the condition of my daughter. I wish I could protect her from it's harshness. I pray instead of my fear that I will be able to impart to her a understanding of how loved she is based on how much God loves me. I pray she will carry this healthy understanding which we both know can be active in our children's lives because we have faith in our Father. The edge coming from society we can not change. So I try to approach it from my daughters perspective, outwards. We have much better chance of enabling them than trying to enable society. I suppose the labeling and judgement is a disability in society of their own? A disability that they neglect to research the way we appreciate down syndrome being researched?
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