Update in Sept 09: For those who are looking for photos, check out this post.
Our family knows about the C in vcfs. Maggie's been to the cardiologist at least once a year and had three surgeries.
We know about the V in vcfs. The velum (or soft palate) is often cleft, and Maggie had surgery to repair that. She and I also spent a lot of time and effort on speech therapy.
But the f, the "facial," was harder to grasp. The doctor who diagnosed her velo-cardio-facial syndrome said that the kids who have that deletion on that particular part of their 22nd chromosome have a certain look. He explained it. I've read about it. I've seen booklets with many many pictures of vcfs kids and adults. But I still don't quite see it. I can see what Down Syndrome looks like. The doctor tells me that vcfs has a "look" (just like Downs does) except that we're not as familiar with it.
Today Children's Hospital had a workshop presented by the author of a new book about educating kids with vcfs. (Learning disabilities is a big problem with vcfs.) When you walk into the room for child-care, and see a dozen or more vcfs kids and some siblings, boy oh boy, suddenly you get a feel for what that "f" stands for. It's easy to see how the kids look alike. And yet, sitting at lunch with their families, it was easy to see how they look just like their parents and brothers and sisters too. Maggie is ours. She looks like us -- especially like Katie! But today I saw how very very much she looks like other kids with vcfs.
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It wasn't until my niece was born that I realized what an advantage it is for my son to have that Ds "look."
ReplyDeleteMy niece has delays due to unknown origins. There is nothing about her face that tells you this, only her behavior. Hence kids start out taking her at face value and then avoid her once they see the behaviors. Now age 8, she often gets hurt feelings because of this.
OTOH, my son's "look" is a visual cue to others. Some will avoid him on sight (without talking to him), others will talk to him knowing not to expect completely "typical" behavior. Either way, it's easier on him because he is rarely shunned to his face. I consider his "look" to be a blessing.
I've heard other moms bemoan the fact that there's no cue to others that a delayed child is slower. I never would've thought that a "look" was a blessing, but now I can see that it is. I suppose in years to come, when vcfs is better known, that Maggie will be recognized, and people will know not to expect rocket-science answers. They'll know to give instructions clearly and slowly, and stuff like that.
ReplyDeleteOne of the nice things for vcfs kids is that they have a lot of trouble recognizing facial expressions and deciphering what they mean. That is bad when an adult gives a kid a certain look with raised eyebrows or whatever, and the kid is clueless. But on the other hand, vcfs kids often won't realize when they're being shunned. So they don't have as much problem with hurt feelings as it sounds like your niece (and so many others!) must deal with.
You think that its "nice" for a VCFS individual to not be able to recognize facial expressions? I grew up being able to do this and more. I'm hurt by your comment that you think your kids won't have trouble being shunned? They will. It will hit them harder when they get older, learning how to get by with reading people in whatever way they learn to. But it will hurt. Your insensitivity to the many methods humans can shun each other is astounding. People with VCFS, whether a child or an adult, will have problems with being shunned, with their hurt feelings, and their future PTSD. Guaranteed. I have VCFS, I know about it, and I was 20 when it was found. You wouldn't guess from my writing, my appearance or even photos I have on other Web 2.0 applications. I have a BA in creative writing, an AA in the same and another AA in anthropology. I've been told to my face by disability counselors that they think I couldn't get those degrees. Proved 'em wrong.
ReplyDeleteAlcira, notice that I didn't say it's nice for a VCFS individual to not be able to recognize facial expressions. I said a kid with VCFS often (not always) will fail to recognize the subtle cues that other kids give in their petty meanness. On the whole, adults aren't as cruel as children, so by the time the person with VCFS has learned that he/she is being treated differently, he is
ReplyDelete1)more mature than he was at age 5,
2)has already been given a strong foundation of love and acceptance by his family and close friends, and
3) the majority of folks around him (adults) have learned to be kinder and more accommodating of differences than they were when they were kids (especially in the tween and early teen years).
Notice also that I didn't say my daughter would have "no problems" but that she won't have "as much problem" with being shunned, as she's not going to catch on to all the little cues that might indicate she is not welcome in a group. I also try very hard to not to expose her to ugly, mean kids. Because we homeschool, we have always had "family friends" where the whole families are friends together, rather than children having one friend here and one friend there. This means I know the parents of my daughter's friends, and the kids know me as well as my daughter's siblings and daddy, and Maggie's friend's parents know Maggie too. This means I can keep an eye on any relationships that might prove to be harmful.
It sounds like my daughter's disabilities and birth defects are more profound than yours, Alcira. It sounds like you have done quite well for yourself with your hard work and perseverance. Congratulations!