Wednesday, May 13, 2009

A Mixed Bag

I feel like I'm losing friends . . . or losing my ability to relate to people on the same level I did before. Before Finn. Before cancer, even. And I am therefore distancing myself to some degree. It's a self-protection thing, but it also leaves me feeling a little lonely.


I have friends and acquaintances who still lament the fact that their typical baby or child isn't keeping up with so-and-so's baby or child. They worry that maybe something is wrong with their child . . . ? It bothers me. It hurts me. I want to shout, "Your baby is NOT delayed, but if she were, do you think that would be the worst thing in the world?" I guess I had hoped that knowing me, and knowing Finn, would change people in that way, make them care less about keeping up with everyone else, and just appreciate and enjoy what is.

The whole competition and comparison thing? I've had my fill of it. But of course that's because I've been changed. And it's not fair of me, perhaps, to expect everyone else to be changed as well.

Finn is doing really well, developmentally. But. I see the differences between what he can do and what other babies his age can do. I see the differences between what he can do and what my other kids could do at the same age. I've become more and more okay with it. But when other people start carrying on that Junior isn't yet walking at 12 months, yeah, it bothers me.


We have an HMO, so although our insurance covers the costs of almost everything (but not quite!), we get copies of statements for procedures, etc. that they paid for. We got yet another copy of a statement in yesterday's mail (between Finn and Michael, the statements come in bundles almost every day), and I started thinking, "Wow, our insurance has shelled out a lot of money for Finn." And he doesn't even have any serious medical issues like some babies and children with Ds do. But it got me thinking . . . do you think it's possible that insurance companies support prenatal screening, and therefore termination of pregnancies that yield a prenatal diagnosis, as a cost-saving measure? I'm not one to usually go in for conspiracy theories, but I can't help but think that insurance companies might rather see these babies never be born.


Today when I went to pick the twins up from preschool, a group of us moms were gathered outside the classroom waiting for the kids to come out, as usual. I had Lilah with me and Finn in the Ergo. One of the moms, who is pregnant, and who I really don't know at all except that I see her at preschool because her daughter is in the same class with my girls, asked me, "How old is he now?" gesturing to Finn. "He's ten months now," I told her. She said, "I remember when school started, he was so tiny." So we're having this pleasant conversation and all the other moms are chattering too. Then the mom says to me, "So is he standing up and trying to walk now?" Ugh. "Well, " I said, "actually, he's got Down syndrome, so he'll probably do those things a bit later than usual kids." "Ohhhhhh . . . ." the mom said to me. Ugh, ugh, ugh. Ick. Everyone fell silent. I kept a smile plastered to my face. "Don't feel sorry for us, don't you fucking dare feel sorry for us," I silently screamed at them all.


Lori said...

I had not even thought about the insurance thing, but it could be true. How very sad that is.

You are right everyone is not going to change because we have, but we can try our best to educate them. I try to remember that before I had my little girl I didn't know much about DS either and I might have said the wrong things back then too. When people make a comment to me I just try to explain more about DS to them and tell them that even though she may do things later, she will still be able to do them. Just focus on the positive and try to stay positive.

Jen said...

There's nothing that makes me more white-hot-crazy-mad than thinking people are feeling sorry for me. Nothing. I'm so with you on this one. It's bad enough when it's just one person, but a group of them? Ugh. I hate you had to deal with that.

And I don't think your conspiracy theory is far off the mark. I think the entire insurance industry is a racket, anyway, and if it's going to protect their bottom line, well. We can all do the math, and we can all see the writing on the wall.

Karly said...

Sorry you are struggling with friendships. Hopefully you have new ones coming as old ones drift away.

As for the comment you made about Finn to the group of other moms, before having a child with Ds, I think that might have been a conversation ender for me. I probably would have felt bad and like I was an ass for even asking you if he was standing up. I think most people don't know about Ds and are just honestly asking. It's a personal decision, but I don't even really bother to mention Ds anymore. I figure people will ask if they want to know. When someone asks if she is speaking, I just say "nope, not yet" and leave it at that. I dunno. Seems to get less of the "poor you" looks.

Lisa B said...

Sorry you had to go through that exchange with the mom - I think Karly is right, people just don't know what to say but then they gaff by whatever they say.

I totally believe that insurance companies lobby for the prenatal testing to save themselves money - insurance companies are what has made the U.S. healthcare mess what it is, hands down.

As for fading friendships, I think the thing is, when you go through something that your friends are not going through, you hope/expect they will be there for you, but inevitably you get let down by a response or lack of response and you feel the hurt/disappointment/anger that goes with that let down. And that in turn leads you to cease or at least minimize contact with them, and then you are isolated and lonely feeling - I totally get that phenomenon. I hope enough of us give you what you need...Lisa

Ria said...

Ugh indeed! Hang in there! I remember feeling that way when Matthew was younger. I'd be asked, "Is he sitting yet" "Is he crawling yet" "Is he walking yet". I never volunteered the information that he has Down syndrome, especially to someone I hardly knew for fear of how they would react. So I always kept my answer short, "Oh he'll get there" and smile. Then change the topic. Although, this didn't make me feel any less upset, at least I didn't have to experience the awkward "Ohhh". Hang tough Lisa!

Tausha said...

I sooo know what you mean. People do that to us all the time. Oh, he must be crawling everywhere and trying to walk and were like uh no he isn't and this is why and then it goes silent. I just laugh to myself inside and think they are the ones who feel totally uncomfortable and don't know what to say. I know what you mean though it's like don't you dare feel sorry for me!!

datri said...

Over the past five years I've pretty much realized the best action is to just answer the question and not elaborate unless pressed. So when someone asks me "does she talk" or "is she potty trained" I just answer "no" and leave it at that or change the subject. It tends to eliminate all the uncomfortable silence and pity. I never mention the Down syndrome or the autism anymore unless asked. I figure if people see that I'm comfortable with what Kayla can or can't do, then there's no reason for them to feel sorry for us.

Hector and Jennifer Varanini Sanchez said...

Absolutely on the insurance question. Also, beware of any sort of government health care can just imagine the sorts of prenatal testing that will be mandated most likely. Will we even have a choice?!?Scary times I tell you!

Ooooohhhh! I get crazy mad too with the pitiful looks and the "I'm sorry" talk. I swear people must think I'm crazy when I tell them how happy I am and how amazing I think Joaquin is.

Denbeau said...

Absolutely not on the insurance question (sorry, Hector & Jennifer, but I have to disagree). Don't forget that insurance companies also insure doctors, and prenatal screening is defined by CAP as being 'the standard of care'. So a physician that didn't recommend prenatal screening - or had to deal with an insurance company that wouldn't pay for a 'standard of care' procedure - would scream bloody murder, because s/he would potentially be liable for malpractice. However, there's still room for paranoia; it's not whether the test is offered or not, but what cutoff is used to declare a result 'screen positive'. Screen positive results usually lead to amnios, and amnios are expensive, so HMOs (and, I guess, insurance companies) want as low a screen positive rate as possible. For exactly the opposite reason, private practitioners, hospitals and clinics want a high screen positive rate, because they stand to make more money from the follow-on testing. My own feeling is that there is much less to be feared from a government run screening program (such as California's), than there is from the hodge-podge alternatives available in some states.

Hector and Jennifer Varanini Sanchez said...

I think that docs and ins are in cahoots!
Why is it that the ACOG- is that the right agency name-is pushing for prenatal screening on every woman regardless of age? What is the purpose for that? I can't help but think it is to eliminate babies with birth add me to the paranoid list....I'm afraid doctors, insurance companies, health care agencies are all looking after the bottom line....sad. Really just my own two cents! This is a really sensitive topic for me. Don't get me started on the cancer topic and health care/docs/insurance. The China Study opened my eyes big time!

Kim said...

Lisa, what would be the best way for that mom to handle things? I make similar small talk with moms regularly, and I hate to think that I'd be causing a mom pain because her baby wasn't doing what I asked about yet. If I run into a mom of a special needs child, what should I say when she explains that her baby is delayed? How could I offer support and encouragement without sounding condescending or full of pity?

Chrystal said...

Oh, I have SO been there! The friends part (lost some, gained others), complaints of "non-delays", and the "Ohhh" moments.

I'm typically more reserved about sharing M's dx, but I have wondered if people would still think she was so cute if they "knew." Sometimes I even feel like I've missed an opportunity for advocacy by not saying, "That baby you're fawing over right there? Well, she has Ds. Kids with Ds can be beautiful. Tell your friends." Or something like that.

starrlife said...

One thing I think about is true friends. Having a child with DS weeds out all of the superficial friends from the true ones. That being said it is like being an ambassador and we just keep educating and educating- I'm with Lori on this.

Ann said...

Given that insurance companies are in the business of "managing" healthcare resources, I have always been surprised that they are 100% willing to foot the bill of an amnio. All the testing "screens" from AFP to amnio, now nuchals and CVS are designed to detect the extra chromosome. These tests are not inexpensive. When you think that all these tests are designed to target our children with down syndrome... well it takes my breath away. Especially in light of the reported 92% termination rate after a diagnosis.