I don't know how many people who have children with DS are involved with fundraising, education, advocacy. I'm sort of involved. A little fundraising here, a little advocacy and education there. I have a two year old and two year olds keep you from some of your good intentions.
I do have a suggestion though. I know, people who are knee or neck deep in time commitments to organizations do not want to hear suggestions from us casual helpers, but I'm going to make one anyway.
I notice that there are a large number of golf fundraisers out there. A chance for families to get together and raise some cash while having fun and sharing a great meal. I think that, since all the organization of these events have by now had all the wrinkles ironed out of them and they have become annual events for the most part it could be time to change their focus. Maybe instead of friends and celebrities playing alongside people with DS and their families we should invite some of the golf playing members of the medical community. Let some of the doctors who have not had the opportunity to see DS for themselves other than through paragraphs in books. Let them see that a hand with the single palmar crease can efficiently wrap itself around a club and contribute to a decent swing. Let them see that enlarged tongue can contribute to a hearty laugh or maybe a subdued "damn" after a not so good shot. Let them see those short legs travel the 9 or 18 holes on foot and then learn that the player had major open heart surgery shortly after his birth. Let the doctors wonder about the slanted eyes that are shielded by a pair of sunglasses and a visor. Let the doctors realize that all those things they discuss in their offices are really besides the point.
I think that the DS community needs to open the doors to fundraising activities to doctors who are needy of the life experience of actually meeting someone with DS. Imagine what they will return to their office with. Instead of the "will be a burden" sort of comments, they will feel compelled to talk about the person they played golf with.
Again, just a suggestion.
7 comments:
You best be careful, or they're gonna add "activist" to that list. . . ;^)
Did that sound like activism? I just figured the leap from doctor to golf course was almost a no-brainer. ;)
I think it's a great idea!
I'm like you, except with 2 two-year-olds! I have a lot of good intentions for lots of things, but most days just lucky to get out of our pjs by early afternoon.
I agree with you--if doctors had a personal experience with a person with Down syndrome, they would be describing more than just a condition to expecting parents. They would begin to see these unborn babies as people with a future filled with possibilities, not just a collection of chromosomes.
I have to admit not having much experience with people with DS before having my son. I have had my own eyes opened. My husband, who is a doctor, did not know much more than the "facts" about the condition of T21 before having Jude. He only remembered seeing one baby in the children's hospital while he was doing his pediatrics rotation who had open heart surgery and was really sick. That was his only connection, a scary one with a not-so-great outcome.
Doctors need to hear from and see up close more of us families whose lives are far from ruined by having a child with Down syndrome.
Beth and Jude
Wonderful point! Now, how to get the point across; well, that's another story. It's so frustrating to think about all the doctors spouting off a list of characteristics and symptoms when really, all of that is so secondary.
I think that is a great suggestion - I wish that it would happen and we could really get doctors to be aware of more than just the "facts" in a book.
Glad you found me by the way, I added you too!
We have two daughters with DS and one amazing son. Our son is ten and decided to do a Polar Plunge to raise money for Special Olympics. His final event is this weekend and he's busy collecting pledges. He was interviewed on the news and he said, "I know my sisters are too young to participate in the Olympics, but I want them to know I am always going to be there for them."
He is just amazing.
There does need to be more done!! Well said!!
I think that is a brilliant idea!!
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