Tuesday, September 23, 2008

The Comments

If you're looking for some light stories about how Lilly is manipulating her parents or discovering some new skill, you may want to scroll down to the next entry. (And if you don't like video's, then scroll down even more.) But there's something that I want to talk about.

(Stepping onto my soapbox.)

The comments. When people say something, probably unintentionally, trying to sound nice or supportive, but it's not. And me not knowing how to react to hearing certain things. So usually I get quiet, and then later think of some brilliant reply (oh who am I kidding, not brilliant, but just any reply). I'm not particularly judging the people who have said these things, as sometimes people stick their foot in their mouth without meaning to, or don't realize - so here I am just trying to raise some awareness. And it's not like I've been stewing over these comments again and again in my head, but they do stick with me in the back of my mind. So I'd like to share. Again, feel free to keep skip this entry for some more upbeat light material way down below.

  1. She's doing so well for a child with Down syndrome. No, she's doing well for a princess. Lots of kids with DS are doing well. And why are you evaluating how she's doing anyways? Do you look at every child you meet and assess "how they're doing"? And if she wasn't doing as "well" would that be a problem?
  2. I couldn't do what you're doing. You couldn't do what - decide with your husband to get pregnant and actually have the child no matter what? And raise your little girl and love her to pieces and take her to Disney World repeatedly? And watch Annie 3 times a day? Ok, maybe I'll give you that one. But here's an interesting article you should read titled "I'm not a saint, just a parent." http://www.timesonline.co.uk/tol/life_and_style/article633433.ece

  3. (During pregnancy) Are you sure you want to have the baby? She might have heart problems/need glasses/be uncute. Sure, every child might have medical problems. And judging from my pre-lasik blindness and Jon's childhood lazy eye, it would be a miracle if she doesn't need glasses! (BTW she doesn't!) And as for being uncute... seriously, she's my child. Did you even question it? And furthermore, if any of the above were true, that would be fine - because she's my child.

  4. (At 2 weeks old by a nurse!) If she's lucky, when she grows up she can work in a factory someday. Seriously? If she's lucky she can go to the spa and the beach every day with her mama. If she's unlucky maybe she'll be a brain surgeon like her daddy. But if she's really lucky she will find something that she loves to do when she grows up, no matter what it is.

  5. Why are you trying to teach her things? It's not like it makes a difference. (By a therapist!) Well I got my fancy pants $100,000 law degree from a top 20 law school, not like it makes a difference in my current... (I'll stop there)... Besides, Lilly is an excellent learner, has an incredible memory, and picks up so many things easily. Do I even need to defend this one?

  6. She looks so alert! (In a shocked tone of voice.) Well yes, that's what happens when she's awake.

  7. (After doing something silly or stupid they say) "I'm so retarded." Oh I hate this one the most. And the most conflicted feelings. I guess my general response is, it's the most offensive comment you could say around me. Period. But the conflicting feelings are - Are you saying retarded, in the fact that it's a negative thing to be? Because we've met some wonderful people, who are technically mentally retarded, and are great people. And will Lilly be mentally retarded? I'm not sure. I'm not even sure that I'd necessarily wish she wouldn't be - because I love her completely no matter what, however God made her. And if she is, I'm sure she'd still outwit her parents. But who's to say - she's 2. Anyways, just don't say it.

  8. Isn't she sweet! (In a patronizing voice.) I love when she gets compliments, and love when people call her sweet, but this is actually when they say it like that's the only redeeming quality about her. Like that's the only thing she is or could be. She's so many other things as well - bright, funny, adorable, a handful, a master manipulator, etc.

  9. I knew a kid once with DS (usually about 30 years ago). He a) tried to kiss me and it was so gross! b) went to my church and was so sweet (in that tone) c) went to my school and kids were nice to him (wow they were even NICE to him?!) OR d) died. I mean, it's great that you knew someone. But when you tell me negative things he did, or if you didn't really know him well, it really isn't pertinent to the conversation. Or even better, I knew someone who was pregnant with a kid with DS (or some other thing) and they aborted. Oh, how lovely. Thanks for sharing.
  10. Is she high functioning? I'm not sure what functions 2 year olds typically accomplish, but she poops on the potty (when bribed with chocolate), watches Annie & Elmo obsessively, and loves when we sing and dance. So I guess she's "high functioning" whatever that means. She's not working at a factory yet though, if that's what you're asking!

In general, the comments that annoy me are any judgmental statements about my daughter or people with DS as a whole. She is first and foremost just a child. I mean, a princess. When your own little angel was born, did you look at them and say "One day she may go to medical school, but there's a strong chance that she'll have an alcohol or drug problem, have a kid out of wedlock, and go through 4 divorces." (Not that there's anything wrong with that!) But I'm just saying, with Lilly, when she was born, so many people had "something to say" on what she'd accomplish in her life and what her value was as a person. And at the time we were just trying to accomplish getting her diaper on straight without her pooping out the side. Or aquiring boyfriends (Scarlett O'Hara is her hero, after the princesses of course). Or now, she's just living the life of a toddler (and what a fun little life it is!). What other kids are constantly assessed on their every characteristic and milestone? I don't hear you say about the smart kid: "Yeah, he's so smart but we really need to work on his social skills so that down the road he's not an outcast and can eventually get into a fraternity in college."

So what is my point? Take my daughter (and every other child) at face value. No prejudgments based on the fact that they have enhanced chromosomes, or that they are born a twin or that they have blonde hair, or that they are a different ethnic background than your own. Kids are just kids. And it's not that I'm constantly dwelling on the subject, but I just thought it needed to be said.

(Stepping down off my soapbox.)

But of course, anyone reading this blog regularly already knows what proud parents we are, and that we would all be lucky enough to be as cool as Lilly is. But just thought I'd say these things for all the people who aren't reading so they know. So I guess, um, well - just spread the news ok?


Robyn said...

You are eloquent and insightful and witty...as always. I love your honesty, and in my humble opinion, I think you have the right to bodyslam anyone who says anything that remotely offends you, or more importantly, Princess Lilly.

Matt Elliott said...

Oh, how I loved this wonderfully honest post! As an adoptive parent -- of a child who has Asperger's, no less -- I can assure you that Lela & I have had to put up with our own versions of foolish (if well-intended) comments. Stay strong and keep fighting for that delightful child. Can't wait to meet the princess in person one day! Now excuse me while I forward this post to half the free world. 8-) Much love ~

Anonymous said...

Oh my gosh...I laughed out loud, was disgusted, wanted to cry, and yelled "NO!" at the computer at least 4 times each during this post. I should write one of these about autistic spectrum kids. My favorite is "Isaac was so good "today" (the implication is that he's been a maniac the other 180 days he's been in our classroom). Funny how no one ever says that about my typical children. I HAVE to meet Lilly when you come back to the states. Thanks so much for this post, and we will watch "Annie" this afternoon in your honor. - Lela Elliott

Anonymous said...

Well said, my friend!!!!
May I share?
When I finally made it out into the world when Rumi was an infant, I happily went to Sam's Club, Rumi in the car seat in the basket (remember those days?). I ran into our natural childbirth teacher. I said, 'This is Rumi, isn't he beautiful? In case you don't know, he has Down syndrome." (which I chose to say to everybody at first so they wouldn't be wondering. Anyway, she responded, "Oh, how awful for you".
Bless her foot in mouth self. That was a monster blunder. I looked at her shocked and in awe all at once. I said, "well, no not really."
Wow. What a thing to say.

Cathleen, I love and miss you.
Thanks for the blog.

Anonymous said...

I remember wanting to punch the nurse who made that comment, Cath.

Cathleen said...

Can I comment on my own post? Well it's my blog so why not? Not that anyone's reading this, right?

I just remembered two others - when people told me Lilly would "never be able to" brush her own teeth or turn on a light switch. In both instances, we went home and she mastered the skill that day (around 18 months). So keep it coming, you're giving us motivation to teach Lilly more things!

Anonymous said...

I absolutely love reading your posts and stories and learning all the great things about Lilly through you (I have yet to meet her in person, afterall). I am astounded that people would say such things to you. I have to say, however, that I would definitely advocate you telling people with "smart" children that the kids need help developing their social skills - maybe if you would, we wouldn't have had to deal with so many weirdos in law school! Just a thought.