Sunday, April 19, 2009

What do you say?


A couple of weeks ago I took Dylan to the pediatrician for a rash concern. This is our new pediatrician's office - you know - the one who specializes in kiddos with developmental delays? Well, I had kind of an awkward experience. The nurse who saw us is not Dylan's primary care physician, but rather was the only one available on such short notice. Anyway....throughout the entire visit, I was really just not getting great vibes from her. She was a know-it-all type and honestly, I could have done without her "extra jokey" personality. Yeah, so I wasn't exactly in the best mood as we had already had a long medical kind of day, but still. I was looking for a bit more professionalism, I suppose.

The nurse basically blew me off about the rash and told me to stop feeding Dylan peaches, change my detergent and change D's bath soap. Thank you very much.

Then, she looked up at me and said, "Hey. He doesn't have those simian creases.". I said, "Yes, I know. I don't know why. He just...yeah. I don't know.". She then proceeded to point out all of Dylan's "Down syndrome characteristics". "See his eyes? The shape? Then look how they are spaced far apart. Also, his ears are low. His arms are short and his hands are small and pudgy. Also the tone. Look...see?". She then picked up his arm and let it flop to the side and said, "Actually, his isn't bad at all. Usually Down syndrome kids (UGH!!) have much lower tone than that.".

I was standing there. So still. Looking at her. Probably with my mouth open, just....absolutely speechless.

But here is a censored version about what I was thinking: Honestly? How RUDE can you be? To stand there and pick apart my baby like that! This is my baby. My son.

Ugh. I am tearing up just thinking about it.

Then, she gave me a slip of paper to bring to the receptionist to check out. I looked at it and here is what it said:

Problem: Contact Dermatitis
Additional Problems: Down's

Down's. Down's? Are you kidding me? Down's? A. of all - it's not freaking Down's (it's Down, lady!!). And B. - we were not there because of Down syndrome. We were there because of a rash. And what does "Down's" have to do with that?! Sheesh.

Ok...whew. Anywhoo...

Fast forward to Friday.

I was on a walk with Cass and Dylan. We approached a woman who we see all of the time walking with her little dog. We stopped to chat for a bit. It was getting close to 11:30 so I told her that we had to get going as it was almost time for Dylan's PT lesson. She got a worried look on her face and said, "Oh no! Why? What happened?". I responded very casually (even though I was actually quite nervous as I still feel...what's the word...awkward, I guess, telling people that Dylan has Down syndrome) "Oh, nothing is wrong. I'm not sure if I've mentioned this to you before (I knew I hadn't), but Dylan has Down syndrome and...". I stopped for she was no longer listening. She had taken off her sunglasses, leaned in really close to Dylan's face, studied him for a few seconds and turned to me and said, "Huh. He doesn't look like a Down's child.".


So, what is the point of all of this rambling?

What I am wondering from all of you lovely ladies who are traveling this same path, is, what do you do or say when people blurt shall I put this? Rude, ignorant and well...not so empathetic things? Do you just get used to it after a while? I know that I am overly sensitive as it is. And, I mean, I know that these people are not intentionally trying to hurt my (and Dylan's!) feelings. I do know that. And I also realize that part of the problem is that people simply do not know what to say. I try to think about what I would have said if someone told me that their baby had Down syndrome. I don't know what I would have said before having Dylan in my life. I really don't. But jeez, I would like to think that it would have been something a bit more...compassionate....than some of the things that I get now.

So, what do you say when you get the random, ignorant comment? you mind if I steal it for the next time?! : )


Lis said...

I would totally love that nurses number please.

I will never understand people that were not born with that filter between brain and mouth.

I'm sorry honey. I am sorry there are so many rude ignorant people in the world.

I love you.

Jocelyn said...

How frustrating. Sorry you had that experience, and from a medical professional(?). To indicate that Myles has Down syndrome at our Children's Hospital, which we love, the doctors have to pick "Down's Syndrome" from a drop down list. It bugs me, but of course I've never said anything.

Just last Sunday my husband and I were at the grocery store with Myles when a worker there says, "Oh what a cute baby. Do you mind me asking, does he have Down's?" Me: "Yes, he does." Worker: "I could tell from his cheeks" (never gotten that one before?). Worker: "My cousin almost had a baby with Down's, but my pastor and I prayed and the baby was healed." I said nothing, but pretty sure I scowled a bit. We half heartedly smiled and just went on our way. I truly believe in the power of prayer and that God can do whatever, but what?! I also know Myles is who he is and we're proud of him. And he is no less in God's favor because he wasn't "healed."

I don't have any advice as I'm pretty much cowardly when it comes to this stuff. I try not to let the "Down's" comments bother me that much (they still do), but the other stuff I just boil inside and tell my husband later. Ugh...

Wendy P said...

Well, first, that nurse was ridiculous. Seriously. You should have asked her if changing detergents would help with the "Down's."

As far as the comments, I never know what to say. I usually end up either blank faced or with a pasted on smile. There is a woman from our playgroup who's step-grandchildren are twin girls both with Ds. When she found out that Kira had Ds she said, "Oh, I would have never guessed. Their heads are usually so much bigger than that." What?!?

Derek's grandmother is convinced that Kira's dx is wrong. um...right, pretty sure we can count on that whole karotype from the Mayo clinic thing.

My MIL constantly, constantly, constantly says things like: "Oh is he Down's?" "I thought Down's kids never had dark hair, or blue eyes, etc." She usually says things like this at our Down Syndrome Partnership get-togethers.

Even my own mother likes to point out how often people tell her that they can't tell Kira has Ds. Like that's a compliment.

So, I can't even figure out wth to say to my own friends and family. I'm looking forward to reading your responses!

Angela said...

I think "Down's" bothers me more than most of the other ones. It is just so derogatory.

I am so sorry you had to deal with that at your new doctor's office!! My pedi always writes "Trisomy 21" which is fine, but I hope she knows it's okay with me if she also writes Down syndrome. LOL

I have yet to encounter a flaming rude comment from someone, but I am sure I will probably just do what you did. I am not one for confrontation even though some people need a little enlightening.

Tausha said...

In reading some of the posts already on your blog, my husband and I are cracking up at how ignorant people can be with their comments. We went to a wedding the other night and one of the comments when finding out Sam has DS was, well...he must be a mild case then because you can't tell by looking at him. We had to politely explain to them, you D _ _ _ A _ _ either you have it or you don't. For me I think it depends on the kind of day I am having. Sometimes I can just bite my tongue and leave it at that but sometimes I can go off the handle. But, if it were a professional saying and doing the things they did to you, I would definitaly of said something. I probably would of gotten up and walked out and said sorry but I would rather deal with a professional!

Karly said...

Yeah, I am not a good person to give advice about this I guess. I am pretty blunt. My MIL was always making ignorant comments and I just kept calling her on it and telling her that I would be happy to give her some research so that she wouldn't have to rely on stereotypes as fact.

The only experience we have had with doctors pointing out her "characteristics" are the geneticists. We were new parents and frankly, that's just what they do. But although they like to provide annual follow up care, we have never gone back to see them. Instead our specialist is a doctor who specializes in Ds because he has a child (teenager) with Ds. I have never met a more loving dr. So if it were me, that nurse and office manager would get some education in the form of a personal phone call/letter. That dr would not see my child again.

Sometimes people are ignorant. Even people who should know better.

Mindy said...

Most of the time, I let those comments slide. They're usually innocent. Only if I'm really annoyed will I bother speaking up. The nurse on the other hand...I'd contact the doctor and tell him/her the issue. That was completely inappropriate, and I wouldn't want her to do the same to another family.

Jen said...

I honestly can't believe the rudeness, and the cluelessness, sometimes. I mean, if I was in their situation I might not know the RIGHT thing to say, but I certainly wouldn't say the WRONG thing, or something rude. I'd like to think that general politeness and kindness would prevail.

If it's some older person, I usually just let it slide. That's just their generation. If it's an older person that I'm related to, I try to kindly educate them as to what's what. If it's someone who just says something rude, I might have a snappy comeback, but most likely I'll say nothing, because typically I'm very non-confrontational. That nurse, The ultimate in unprofessionalness. Sounds like she was trying to show off how much she knows. (but really just showing how LITTLE she knows!) The doctor should be made aware...maybe write them a letter?

Anyway, this is not helpful at all. Just wanted to commiserate.

Amanda said...

That nurse sounds HORRIBLE! I cannot believe she did all of that. You should complain, you really should. I am completely insulted on your behalf!

j*e*n said...

Hubby & I actually switched ENTs because of the comments he made about our daughter and other patients of his. Couldn't stand the way he referred to them, like they were just numbers on a page, not actually people.

No advice on a snappy comeback. Only thing I would say is that maybe "Dylan didn't choose to have Down Syndrome, but apparently you have chosen to be a(n) (fill-in-the-blank-with-your-insult-of-choice)." Though in my experience, people don't usually mean anything by it, they just don't know better and honestly don't think about what they say before it comes flying out of their mouths.

People don't understand that our kiddos have DS. It's like being either are or you're not. There are not varying degrees of DS. Different types of DS exist, but it doesn't change the fact that my daughter has it.

Ruby's Mom said...

I can't believe that nurse! She doesn't think you already know all those things about Dylan? He IS YOUR baby for Pete's sake! She really thought she had to point those things out to you? RUDE!
And the lady leaning in and looking at Dylan would have bugged the fire out of me!! RUDE!
I don't know what I would have said either.Maybe we should let people know how rude they are being so they wont do it to others.I know before I had Ruby I always tried to treat everyone with respect no matter what their abilities.I would like to be treated the same way.

Tricia said...

I wish a had a response in my pocket to pull out and use, but it depends SO much on the situation for me. The situation, the person, the tone, MY MOOD! :)

That nurse is the worst!

Hector and Jennifer Varanini Sanchez said...

I get it ALL the time...comments like "He looks good" "He must have a mild case" "I wouldn't have guessed he has DS"....all of it. It's exhausting and confusing and I don't even know where to begin but I hear you. I look forward to one of us coming up with a slogan we can use to whip these people into shape :)!!!

Lisa said...

Oh Laurie. First of all - please, PLEASE, write a letter to your pediatrician about the doctor you saw. That was completely unprofessional, completely insensitive, and completely unnacceptable. Please write a letter. You have to get that documented, and the practice she is with needs to be put on notice of her offensive behavior. I can't help but wonder how many parents/children she has done that to! Man, my blood is boiling!

I can't recall off the top of my head having such rude, insensitive comments made like the two you've described here, although if I go back over past posts in my blog, maybe I'll come across something. It's so hard to know what to say, how to react in those situations. I have all kinds of less-than-nice things I can imagine responding with, but the truth is, when you're actually face to face with such a scenario, I think most people freeze.

I'm sorry you've had these experiences. If I could, I'd go open a big ol' can of whoop ass on those two bitches for you and Dylan.

(((hugs hugs)))

Anne and Whitney: Up, Down and All Around said...

I am with most of the other moms who left comments - I do not have a good response for those situations, I guess like someone else said, it would probably depend on the situation, who was making a comment, how well I knew them (or not), my mood, etc...

As for the nurse, I know you only recently switched to this pediatrician's office, but I kind of feel like if they have a nurse who is that unprofessional, I would CRUISE that office!!!! In addition, I would write a letter to the pediatrician, cc the office manager and explain that you are leaving because of the offensive behavior of one of the nurses and that you will be sure to direct people you know away from that office (maybe I am overreacting with my response, but I am so upset for you!!!)
Let me know if you come up with a really good answer about what to say in these kind of situations!!! :)

Cathy said...

How about this..."You're an uneducated, insensitive fool!"

OK, I would never have the nerve to say that. I agree with Lisa though...write a letter to the pediatrician. You can do it from the "I'm just trying to educate" point of view instead of the "your nurse is an idiot" view.

I'm still waiting for this to happen to me. Maybe it's an advantage that I never get to go anywhere! Avoid the uneducated fools! LOL

(((Hugs))) to you!

Kimberly said...

Like I said before, I do think that you should call the Dr.s office and let them know what happened, that is so umprofessional. The rash has nothing to do with Ds. I think that lady needs to educate herself and realize how ignorant her comments were. As far as that women in the street, I am so sorry that you and Dylan had to experience that. I just don't understand people, you should have said, um what exactly are you looking for?? Unfortunatly I think we will all have to deal with ignorant people, but by trying to educate people and make people understand Ds, maybe one less person will Ds will have to deal with the ignorace. Love you

Lisa said...

Wow. I am so, so sorry you had to deal with that sort of thing! People make insensitive comments so often without even realizing it, but the nurse in particular should have known better (!).

When Bridget was a baby, I was still trying to absorb her diagnosis and figure out how to tell others about it. We all need to find things to say that fit our personality and also the situation.

I used to just stand there--a little stunned--when someone made a comment that hurt (you can't always see it coming). You replay the situation in your head for days, trying to figure out what you should have said.

I now have all sorts of statements in my "bag".

I am usually straightforward and positive, and I remind myself that each of these situations is a chance for me to advocate for Bridget and for other people who have a diagnosis of Down syndrome (really, for people with a diagnosis of any type). It is important for all of us (parents and family members) to be well versed on the basics (why Ds occurs, the range of associated physical features, common health issues, improvements in medical care for people with Ds, and current terminology, etc.) People will ask about those things. Most people will not have personal experience related to Down syndrome. Your child might be the first person they've encountered with the diagnosis.

Here are some ideas:

If people seem to be wondering whether she has a diagnosis, I'll just come right out with it: "Bridget has Down syndrome" or "She is developmentally delayed". In case they can't see for themselves, I always follow with: "She is awesome". I often ask the person if they have any questions about her diagnosis. It takes some of the stigma away when we don't make excuses or apologies. (She is who she is, and she is amazing.)

When people comment about physical features or health issues, I say, "There is no such thing as a mild case of Down syndrome. You either have it or you don't. Some people with Down syndrome have more significant delays than others, and some have more serious health concerns. As with all people, there is a huge range in appearance, health and abilities."

A shorter version: "That is a stereotype. People with Down syndrome, like everyone else, have a range of abilities and challenges."

I also say things like: "We know much more about Down syndrome today than was known even 20 years ago. People with Ds are capable of so much more than ever thought possible. I'd never want to dictate to any of my children what someone else thinks they can't do."

"Everyone has strengths and challenges. She does, too."

I will always highlight her unique personality, her abilities and potential, and the fact that she is a child--a person with a diagnosis--not the diagnosis itself.

Feel free to use any of these statements (in whole, or pieces and parts).

Towanda said...

I cant even BEGIN to tell you just how much your blog has made my day. It was like FINALLY someone is feeling what I am. THANK YOU SOOOO MUCH I know you probably hear that alot but I really mean it. It helped me make it through my mini meltdown today, so much so that I started my own blog!

Gabby & Gabe's Mommy

Bethany said...

LOL Been there! Payton does not have a lot of markers at all. Earlier this week, we were in the geneticist's office and she had a med student. She went through the whole list of "DS Markers" pointing out what Payton has and doesn't have. Mind you, we have already been through this with her when P was an infant. This was all just for the show of the student. I'm like, she isn't a friggin guinea pig! And the fact that she doesn't have many markers sure doesn't help the student! LMAO

Amy and Aaron said...

Ahhh yes - we've all dealt with the insensitive and ignorant comments. One of my favs:

"Well, at least you won't need a college fund for him." !!!!!!!

I'm usually too meek to have much of a snappy come-back, just try to keep educating. If someone does make a comment that defines Matthew as his diagnosis, however - "What a cute Down's baby!" (Arrrgh!) I have responded:

"We prefer to call him Matthew."

Loren Stow said...

I'll never forget the time a paediatrician said that Malakai had 'abnormal chormosomes' and my reply (as quick as lighting, I must say) was 'no. he has 46 perfectly normal chromosomes and 1 extra.'
That's about the only witty thing I ever said - for the most part I just tolerate their ignorance - because that's all it really is - not knowing.

The Boltz Family said...

Ah, ignorance. I wish I could tell you what to say. I once told an elderly woman that Jack had Down syndrome, and she proceeded to say "He has Down syndrome? He does not have that big head look that I associate with Down's." I notice someone else on here got the big head comment. What is up with that?

Jeanette said...

Wow, it sounds like you got LOTS of great advice. My comments fall in line with Lisa from Bridget's Light. Unless I am in an awful mood, I typically politely educate. I also have to agree with Lisa, Finn's mom that a letter to the pediatrician is necessary. Since I meet so many new moms I can't help but think about how many of them are not at peace with the DX and inventorying a child's DS markers could put someone over the edge. It was insanely rude and terribly impolite! My inner witch would have been taking inventory of her personal traits. LOL. Anyway, I have a very sarcastic brain, but fortunately a good filter between it and my mouth. I try my best to respond with kindness and love, unless something is said with malice... that would be a different story. Luckily, I have only run across rudeness due to ignorance.
The worst was my MIL telling me that Sydney could get cosmetic surgery on her eyes when she gets older to "look normal". Talk about SELF-CONTROL of my mouth! Whew! That was the toughest one that I have come up on so far.

JennyH said...

I get used to it. I hate 'downs' as well. Every letter I have wrote regarding Down syndrome awareness always has the way it should be said and the reasoning behind it. People still say 'downs' and it does drive me crazy. I always say it the correct way and hope people will pick it up from me. I have made comments if someone used the "R" word though.

My son is 7 1/2 years old.

Amy said...

I'm sorry you have to deal with people like that. But in all honesty I'm not sure what I would say. Do the people make the comment "well he doesn't look like your typical DS baby" because they think it would make you feel better? What is the appropriate response when someone tells you they have a DS baby?