Wednesday, February 25, 2009

Opthamologist

Finn had his first visit with a pediatric opthamologist this morning, just to get a baseline eval. Poor baby had to get his pupils dilated. Actually he seemed okay with it, but I know that I personally HATE having my pupils dilated. Anyhow, the doc was an older guy and when he asked what we were there for, I told him "Well, he has Down syndrome, and our pediatrician just wants to get a baseline evaluation." The first thing the doc said then was, "Oh, well, he must have a mild form of Down syndrome . . . he looks great!" I dunno. I wasn't offended, but these types of comments leave me scratching my head. I mean, he's a doctor. Don't doctors know that there's no such thing as a "mild form of Down syndrome"? Anyway, he was very nice. He said that it appears that Finn has a mild astigmatism (sheesh! already! I have really bad astigmatism and terrible vision and I've always worried about passing that on to my kids, but so far all of them have been okay in the vision department), but that his eyesight seems to be just fine at this point. He also said that it appears that the optic nerve in Finn's left eye might be a little smaller than normal (but he's not completely sure, as it was hard to see). He said that that is not something typically associated with Ds, but rather with either babies born to moms who had gestational diabetes or who drank heavily during pregnancy! I looked at him in horror, hoping he didn't think I did that! I told him, "Well, neither of those apply to me . . . really!"

So anyway, he wants to see him again in 6 months, and that's that.

But.

As a little side story: while we were waiting in the waiting room, a mom sat down next to me. I was holding Finn on my lap. She had a toddler with her and was pregnant. She said to me, "Oh, he's so cute! How old is he?" I told her, "Seven months." She said, "So he's probably sitting up and doing all those things?" Ugh. Ugh. Ugh. I honestly am beginning to hate this age for Finn, if only because now, when people assume he's a typical baby, they also assume he's doing all the typical things, and then I feel like I have to explain him, and it feels like I'm giving a disclaimer about my baby or something. And I'm sure I could just choose to handle it differently and not even address the Ds part - I mean, this was a stranger, someone I'm never going to see again. Why should I give a crap what she thinks? But I'm honest to a fault, and really, I try to look at it as an opportunity to educate someone. So I said, "Actually, he has Down syndrome, and often babies with Down syndrome do things a bit later. He's working on sitting up by himself, but not quite there yet." I try to keep an upbeat tone to my voice, because really, I feel like I'm okay with it. What bothers me is the "Ohhhhhh . . . ." I typically get in response. It feels like they're thinking something along the lines of, "Oh, you poor woman, you got a defective baby." I want to say, "Hey, don't feel bad! We're really okay with it! He's a wonderful baby, and you should be so lucky to have one like him!"

12 comments:

Carla said...

I'm wondering if there is something you could keep in your standard arsenal of responses to people that would make you feel more comfortable. It seems like you have found something that works when you says, "well, he has Ds, and Ds babies typically...", but what about something more to say to their "oooohhh..." response. How about something along the lines of "..and we love him with just as much gusto as our other children; I mean what's an extra chromosome when you've already got 5 other kids running around?".

Carla said...

*say*

Following Him said...

I would have had to try really hard not to slap the lady. Finn is a BEAUTIFUL boy!
~Elyse~

rickismom said...

As for the doctor, I once had a young (not from the "well sdon't expect anything" generation) DEVELOPEMENTAL pediatrition ask me if Ricki isn't mosaic DS. I said "NO, she is just what a standard child with DS can do if educated properly!!"

As for the parent: The big rub is that we smile and say how we love our child (and we DO), but even on those off days when we feel that we fell into a bottomless pit, we still put on the "it's nothing" act, and somewhere inside we wish people could accept our child AS IS, without being almost perfect, without him having to measure up to everyone else. And we wish that we could sometimes admit that this is not always an easy track to run on. But we worry that if we admit such a thing, it only strengthens those who say that their lives are not worth living, and so we shut up and smile and something inside cracks a little bit.

Greg said...

Finn and my daughter Megan are close in age and development milestones, so I pop in now and then to see what's going on with Finn... It amazes me how many similar experiences we share. It isn't always evident to everyone that Megan has Ds either, and we are often told how cute she is and then asked her age. She is going to be one year old in a few weeks but she still is very small, wearing 3-6 month old clothes (but then again, all my kids have been pretty small). She is beginning to sit on her own and gets up on all fours and rocks back and forth but has not started to crawl yet. So when we tell people how old she is we often find our self in the same situation, explaining why she is smaller or is not sitting and crawling yet. I sometimes think it would be easier to carry a handout with me that explains everything and then just telling them to read it. But I realize that before we had Megan we didn't know much about Ds either and probably would be asking the same questions of you if we met you and Finn without knowing he has Ds. But still, I understand what it's like to answer the same questions over and over.

And like you, we also learned that even though someone is a doctor, they don't necessarily know much about Ds, and in some cases don't even have very good "people skills". I wanted to kick my wife's obgyn's butt after one visit (about 6 or 7 months into the pregnancy). We already knew we would be having a baby with Ds but didn't know what type of other issues she might be born with (thankfully Megan is perfectly healthy). Back then we were already nervous and frightened of the unknown. Well this inexperienced obgyn tells my wife that he has an older patient with Ds and that the patient's parents elected to have their daughter get a hysterectomy. He told my wife that we will probably want to do this too because we won't want to have to deal with "that time of the month" as she gets older. Then he even goes on to tell her that some girls with Ds are promiscuous, and that pedophiles prey on girls with Ds and we wouldn't want our daughter to get pregnant in either case. So to this day I wonder what the heck he was thinking, telling her things like that. Needless to say she came home crying. Even if his points were valid, this is something that could be discussed many years from now. I guess we expect more from doctors and trained professionals. But I've come to learn that it's those of us that have kids with Ds and experience it every day, learn the most about Ds and become the most compassionate and understanding of others experiencing the same or similar things. Just because someone is a doctor doesn't mean they know much about Ds, or even have a clue about how to compassionately and empathetically interact with others. Oh well, chalk it up to a learning experience.

SunflowerMom said...

"Then he even goes on to tell her that some girls with Ds are promiscuous, and that pedophiles prey on girls with Ds and we wouldn't want our daughter to get pregnant in either case."

What an absolutely horrible thing to say to any mother! Esp a pg one worried about her daughter's future! I'm so sorry you had such an ignorant encounter.

Lisa- your Ped. Op. really ought to know better- they see so many kids with Ds! Glad to hear his eyes are looking good. I always find those exams so amazing.

As for what to say about milestones, I always said "he's getting there! Making great progress every day."

Tausha said...

Hey, if you read this, will you e-mail me at tbdingman@comcast.net I wanted to talk with you about Finn getting his eyes checked already. Sam was born a few weeks after Finn and our Pediatrician hasn't said anything about getting his eyes checked? I wonder if I should get him in?

Lisa B said...

Lisa, remember when you gave the list of "good reactions"/"bad reactions" friends/family had towards your initial delivery of the news that Finn had Ds - I found that helpful and I was wondering now, as things have progressed to the stage you are in now - what you explain as the "out in public" reactions to telling someone Finn has Ds and how it is hurtful to receive an "ohhhhh" kind of response, do you have guidance for what would be something could be said in response that would be supportive and not hurtful? (Just thinking this would be a likely next section in your book you are going to write, right? :) ) Lisa

Kristen said...

I just figured the "Ooohhhh..." was more along the lines of... "Oh crap! I just stuck my foot in my mouth. I am an insensitive jerk!"

If you want to go the guilt free honest way..."He is amazing and I am so in love with him!"

The Unknown Contributor said...

Lisa,

I am right there with you. I go through this a couple times a week and I still am not sure how to respond. I want to educate people and have them see that children with DS aren't so different but I am sick of the reactions the truth brings out in people. The one that makes me the most upset is the cheerful "Well, she doesn't look downsy"... as if not looking "downsy" (a word I can't stand) somehow makes it less real.

I am going to try responding to people's initial comment/question with "She is right on target for a child with DS." or "She is just the right size for a child her age that has DS." And beyond that I plan to ignore any stupid or thoughtless comments because it annoys me to feel obligated to say I am ok with the diagnosis and love her anyway. I am ok with it and I do love her anyway but I don't think I should have to tell people that like it is some sort of defense of her existance. I mean, I don't go around proclaiming my acceptance of and love for my boys everytime someone notices they aren't perfect.

Hmmm... now you've got me thinking about why I do feel so obligated to tell people I accept her and love her...guess I will have to write a post about it ;-)

starrlife said...

Sometimes I say "faster isn't necessarily better"! But most people just aren't that skilled dealing with anything but the usual.

Jodi said...

I was just talking with my college students about questions people ask to "make conversation" rather than really being interested in the answer. Asking kids "what do you want to be when you grow up?" or college students, "what are you going to do after graduation?" or everyone asking everyone else, "How are you?" Almost no one asking you if Finn is sitting up really wants to know about sitting - they're just trying to make conversation. On the days when you have time/energy and the inclination sure have the Ds conversation. But, you might want to have an alternate answer ready like Carla suggested for those times when you don't - like "he's too busy playing with his toys" or whatever other activity he is doing at the time. Unless you happen to be talking with one of those ultra-competitive comparison moms, they're really not keeping tabs on when your children sit, crawl, walk, etc.