12 May 2009

Some people-

Would you please take a good look at the photo of that gorgeous little boy up there at the top of this blog? Does he look like he has Down's Syndrome?

Well, somebody thought so tonight.

A woman, whom I have never met started talking to Liam at the ball game tonight.

I had Liam on my hip while we were seated in the bleachers. She grabbed his hand (and I am cringing the entire time she is holding it , thinking she doesn't know about RSV, swine flu, etc.. or she wouldn't do that!) and starts chatting away to him and to me. I honestly couldn't tell you what all she was saying because I was so distracted by thoughts of viruses.

All of a sudden, my attention turns right to her as I hear her say, "Does he have Down's Syndrome?"

WHAT? What did you just ask me??

In the 5 seconds it took me to respond, I had several different scenarios running through my mind.

Do I educate this poor woman and tell her he has CP?

Do I then want to engage in a discussion that will surely follow about his birth?

Do I just say no and ask her what she means by that? Does he look different to you? Because he has glasses does that automatically mean he has a gene disorder?

Do I ask her if she's crazy? How rude can you be? If you are overweight do you assume the woman is pregnant?

I finally decided on the simplest, yet most profound response I could think of.



She didn't even apologize! She said something about what he was doing and that he reminded her of.... and then she quit talking. I hope she realized she was just digging her hole bigger. But an apology would have gone a long way.

I was upset. Shawn coaches the team so I was alone. And I didn't know any of the parents on my son's ball team this year but I knew one of the mom's on the other team so I headed over there to let off some steam. I was so thankful I did.

Sherry asked me if I wanted her to go whoop on her when I told her what had just happened. Of course not. I am sure she didn't mean any harm. I am sure she was just trying to relate to me in some way?

And then Sherry told me a hilarious story.

When her son Caleb was little, they were in Wal-Mart. Caleb had a medal on a ribbon around his neck. The Wal-Mart associate started talking to Caleb and Caleb was talking back as well as a 3 or 4 year old kid will. Then the associate turned to Sherry and asked if Caleb liked sports. Sherry stated that he sure did. And then the associate said, "You should get him involved in the Special Olympics. I'm sure he would do really good!"

I laughed so hard. Caleb is a perfectly healthy boy! It was just what I needed to unwind from my irritation. My irritation isn't completely gone because I am hurt that people would say something like that. People just don't think or realize what they are saying! And they don't realize the impact of their words. If he has Down's Syndrome it would have been different. But, he doesn't and to assume a disorder on someone you have just met is completely weird.

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Sassy said...

Your right! That was very rude and inapprorpriate! OH, and I so get what you mean by the hand/viruses thing. Why is it that...1) some people think it is entirely ok to touch your kid without asking and 2)they always go for the hands or face?!?! It is so frustrating. I used to be so concerned about hurting other peoples feelings but anymore I don't even care. I just say "ummm if you could not touch her that would be great...THANKS!" I get some odd looks. Some hurt, some mad. But I don't care. Besides, they should know better anyway.

K said...

Honestly, I wouldn't get so worked up over it. Is it really so much more horrible to have Down's than CP? Yes, I agree with you that he's gorgeous! But...would he be less gorgeous with Down's? Nope. He'd still be sweet, beautiful Liam. Are babies with Down's ugly just because they have Down's? (Sorry, but the way you worded it makes it sound like Down's babies can not be gorgeous!) I hope this does not offend you, but it is clear to me just by seeing the pictures you've posted that he is not neurotypical. I think a lot of people probably see that...they're just not all educated enough to know the differences between Down's and CP. This woman is just one of them.

Only the Sheppards said...

Oooooh, people make me so angry sometimes! It's like, no one knows what to say when they're around a kid that's different, so they just relate it to that one thing they know about that one kid they once saw...

I love it when people find out Dax is a preemie, and they say how, oooh they know all about that... Their neighbor/sister/friend/etc... had a baby that was 2 weeks early.

I'm glad your friend was there, and her story is priceless! Somthing similar happened to my older brother once when he was about 18... He dressed a little strangely to embarrass his girlfriend when they went out to dinner, and the waitress let him have his dinner for half price since he was "special." Ha!

To respond to your comment you left me last night... Yes, I'm very proud of him! I wasn't sure he would be able to stay up the whole time, and he didn't like sitting there, but he did :) He continues to amaze me, and we're still not sure how or why he's able to do what he's doing, but we aren't asking questions! And, yes, Liam is FREAKING ADORABLE in his glasses :) Hope we can find some as cute, but none of the places with cute glasses take our insurance. I hate to spend a bunch of money on a pair that I'll probably step on in a week or so...

How long did it take to get Liam to leave them on without being mad?

Anonymous said...

Ok, now I know how to post...

I feel for you-I remember early in school-4th grade maybe a group of people coming and educating us on CP-but apparently this woman missed that class. You are right, and were very kind to respond how you did-in that she was probably "trying to relate" or something. While I don't think she meant any harm, you are right, an apology would have gone a long way. For you that is-as it is very unsettling and uncomfortable to get unwanted feedback from strangers when you are still trying to sort everything out yourself. Liam is beautiful and it wouldn't matter what he did or did not have, he is still your precious baby and a gift to the world.

I can relate in that until my son was 15 months old, many would people would call his name-sweetly, of course, and when he did not respond they would get offended or say something in a rude tone like "He is just in his own world" I would either just laugh politely or say, "I should have mentioned, he doesn't respond to his name yet, but you never know when he might." While I know they meant no harm, it still sometimes bothered me-what I wanted to say was yes, he is in his own world right now trying to deal with the million things that stimulate and frighten him. He may always be in his own world-would you say that to him if he were 12? I always take comfort in knowing that while he is fussing and upset in public, I know later at home I could get him to relax for a few minutes and cuddle him and if I'm lucky get him to smile or laugh. I don't care what the rest of the world thinks-or how young or old they assume he is (usually they assume he is much younger as he is behind in many areas), I know that he does laugh and smile when he is comfortable and feeling safe. While I suppose those people are fortunate to have not experienced what we have, I think actually we are more fortunate in being able to feel the love and needs of the little ones who need a bit more to grow. You are doing an amazing job-I love seeing his cute little face whenever I pull up your site.

Anonymous said...

My wife is more than capable of defending and articulating herself, but I feel I need to weigh in here. If you have to use the phrase "I hope I don't offend you", you should probably not express your next thought. Is no one taught tact anymore? My grandfather and dad would have cuffed my ears, even today, for being so obtuse. Yes, we know our son isn't neurotypical. He was born without a large portion of his cerebellum due to his extreme prematurity. Do we need to be reminded of it by people around us? No, thanks though. Jennifer has literally invested blood, sweat, and tears, not to mention buckets of money, to give Liam the best chance to just be normal. That means able to walk and talk and become an independent person. We have had a fairly traumatic last couple of years, so please forgive us for developing coping mechanisms. Like hoping Liam's therapy will rewire his brain so he can use his hands properly or run with his brother and sisters. Like believing that God's use of Liam's condition will enable him to one day get married, have kids of his own, and contribute meaningfully to society. A polite society that doesn't feel the urge to point out every flaw their impressive mastery of the obvious has afforded them. Normally I'm talking Jennifer down from the clock tower, but I reserve my right as husband and father to deal with those that insult my family. We do things that way here in the South.

Rebecca said...

Jen, I am totally with you on people touching hands and face!! aagghh...I am going to get a backbone and just start telling people not to do that, but until then I will keep using my handy dandy wipe on his hands as soon as they let go. : )

As for people saying stupid stuff...well, I admit, last year before I got pregnant, I asked a non pregnant woman, "When are you due?" Never again! Thought you might like a laugh at my expense!

By the way, your entire family is perfect and beautifu!! : )

mimi said...

Let me first say Liam is a true miracle that he is even here today, and as his grandmother I hurt when ever my daughter or grandchildren hurt and it does every time I hear anything negative. When Jennifer called me and told me what this lady had sad, all I could feel was how hot my skin was becoming. I see only a beautiful baby who has worked hard to be here with us today. Liam is strong and smart. How do you say something like this woman did to a mother who knows her child has issues but is working hard at them. Why would anyone ask such a question. My first word would have been no he isn't a down syndrome baby and I don't know how you came up with that question then, what if he was. That doesn't change who Liam would be. He would still be beautiful and smart. I just hope people would not ask ridiculous questions next time they see a baby or child who "they" deem different. Liam was just born before his time that is all and he will work hard and with time hopefully to overcome many of his issues. But if he doesn't he is still our Liam. He is a gift from God and you wouldn't give a gift from God back just because he is special. If this comment can help people to spread the word that certain questions are left better unspoken then some other mother will be saved from being hurt.

K said...

Sorry you took it that way, but my post was not "obtuse." It wasn't rude or lacking in tact. My point was not to point out that Liam is not neurotypical...obviously you know that. My point (or one, at least) is that not everyone knows the difference between CP and Down's...heck, I've known people that think they're the same thing...and, like several others have said, they try to relate things to what they know. Is it a bit rude and weird to do so to a total stranger? Yeah, and I personally wouldn't do it, but that's how some people are. My other point is that Down's Syndrome is not this awful thing that Jennifer seems to think it is. No worse than CP, anyways. I've known many people with Down's, both in my personal and professional life, and they've all been bright, delightful, wonderful people. So I guess what I'm saying is, I don't understand why she'd see it as such an insult for someone to assume Liam has it. I get being weirded out by people you don't know coming over and talking to your kid. That's not cool. But confusing Down's with CP is not an insult and shouldn't be taken as such.

23 weekers said...

I've had people ask me if Carver has Down's Syndrome, too. I asked the last lady why she thought he had Down's Syndrome - her answer was, "Because his tongue is so big". What?!


Only the Sheppards said...

I don't think the point of the story was meant to be that Downs is somehow bad... I work with developmentally delayed adults, and several of my clients have DS. However, when you are the mother of a child who has fought so hard and so long, and who you have worked day in and day out to keep alive and healthy and make progress (as I am, also), you're instilled with a certain pride and protectfulness for your child that most people can't understand. No, to most people CP and Downs aren't that different, but other people's ignorance of our situations do not change our situations, and, quite honestly, when every time you take your child out and you're forced to deal with other people's ignorance, it does get old sometimes. I imagine to your typical mother of a tyical child, it would be like having your little boy mistaken for a girl, or vice versa, by a well-meaning stranger. The problem is, most strangers are well-meaning, but uninformed, and things that are never meant to be hurtful can cut like a knife sometimes, even when others don't understand what the big deal is...

Anonymous said...

Oh wow! I would've been upset as well. I mean it's like the saying goes...what matters is how a saying is perceived, not how it was meant. If you don't have anything good to say, you shouldn't say it all. Especially when you don't know the person, you don't just say things like that...and then don't apologize. If I was the "old me" and wasn't trying to serve God the way I do, I would've had the same attitude Sherry had...BEAT HER DOWN! Thank God for deliverance! Now, we have to let God fight those battles. Ashley

Tiffany said...

Wow! What a hot topic! For some reason tact does not exist any more. I'm trying to figure out when it became polite for ANY stranger to ask what health issues a person has, baby or adult. If I had a quarter for how many adults ask me "What's wrong with his eye?" (He wears a patch daily). I want to say, "Why? Are you a doctor or nurse? Do you have some suggestions or solutions for me? Or are you just nosy?" But instead I usually say "lazy eye" (because they don't have a clue what amblyobia is; I didn't) and move on.

I think we (as a society) need to mind our own business and reserve those type of questions for the people we are close to. Knowing if he had Down's or CP or whatever was not going to do her any good.

(And I know what you mean about trying to use your mouth in a way that is pleasing to God. But that is another post by itself).

*super dude and super dog* said...

That was very rude for her to do. I didn't take your post to mean that there is anything "bad" about DS or CP. I took to mean that people shouldn't be so nosy and make assumptions. We have people come up to us and ask "What's wrong with him?" just because Carter has a feeding tube in his nose; if they don't ask, they just stare like he's a monster. I want to say, "nothing is wrong with him, what's wrong with YOU?"

I also don't understand the need for people to reach out and grab babies. It makes my skin crawl. I want to carry a fly swatter around and pop their hands when they reach out for him! ;)

I think I'm just going to stay in my bubble for a little while longer. haha :)

Anonymous said...

K, There is in fact a gigantic difference between DS & CP and from your comments I don't get the impression you know very much about cp.

My son also has cp and while I think people with DS are God's perfect creation and gifts to this world their capabilities are almost often quite limited as far as living independently, having a career and a family, etc.

CP is a neuromuscular disease and most people with it have normal intelligence and facial characteristics. In fact our son's surgeon had cp in his legs and while he limped, he was an extraordinary and brilliant surgeon.

I think comparing DS & CP is incredibly ignorant as the two have nothing in common. My son wasn't created with a disability he was injured after birth.

I think people with DS are wonderful and show us all about love and joy but they are not at all similar to people with CP and yes I would be more upset if my child had DS only because I know my child will not need care by others if something were to happen to me but if my child had DS I would always worry about who would take care of them because the potential is so different.

AshleyS said...

Glad I'm not the only one cringing when strangers decide to paw all over Clayton. And the nosiness of people never ceases to amaze me. The only time I ever "appreciated" the way someone put it: a man asked us once what Clayton's "challenges" were instead of blurting out "what's WRONG with him?" I thought that was a great way of asking without digging a hole for himself . . .

K said...

Dear Anonymous...

"My son also has cp and while I think people with DS are God's perfect creation and gifts to this world their capabilities are almost often quite limited as far as living independently, having a career and a family, etc."

This is a load of crap. I spent much time in college studying both CP and Down's for my career in therapeutic recreation. I have worked in a nursing home and rehab center with numerous people affected by CP and Down's. I know there is a major difference between the two...but they have one thing in common...both cover a wide spectrum of abilities. Yes, some people with Down's are severely affected physically, mentally, and even emotionally and need constant care all their lives...but many do go on to live independently, hold jobs, and yes, some even have families. Most fall somewhere in the middle. You are mistaken in your assumption of limited abilities inpeople with Down's, and, also, rather narrow minded in your belief that all people with CP will be like your son, "will not need care by others if something were to happen to me" as you say. One of my best friends at work has a daughter with CP who will never live independently. She is in a wheelchair and can not move herself around. Can not get to the toilet herself. Could not use the phone to call for help if she needed it. CP, like Down's, covers a very broad spectrum and you, it seems, are the misinformed one, not I.

Jennifer, I in no way mean to belittle what you go through with your beautiful son. I know you have hopes and dreams for him and work hard to give him as normal a life as possible and every opportunity to reach his potential. But parents of children with Down's are the same way. They, too, have hopes and dreams for their children and many of them will achieve those dreams. There are worse things people could confuse your son with than a child with Down's.

Only the Sheppards said...

I understand what your point is, and I do appreciate your stance on improving awareness of DS and their capabilities. I think what you have managed to accomplish, however, is make a mother of a severely disabled child feel misunderstood and alienated. This is her blog, and it is about her life and struggles with her son with CP. You may not agree with all her thoughts and feelings, but until you've walked 10 ft in her shoes you really don't have any idea what she's been through. She wrote this blog in effort to vent her frustration at another person's ignorance of her own specific child's disability, and her own specific set of circumstances, and you have turned this into a platform for DS awareness... Which is a noble cause, and a worthy cause, but this is not the appropriate time or place to do so. Jennifer fights battles everyday that most of us never have to, and this should be her safe place to let out frustration and excitement to people who can empathize and give her a boost to get on to the next hurdles and milestones. Working in the field you work in, you know how hard it is for mothers of children with ANY disability, and they need support, not criticism.

Mimisx4 said...

Daxtons mom, Thank you for your last post. You said it well. As Liam's grandmother I hate to come on here and see my daughters post of the struggles of her everyday life be turned into a battle from another poster. When someone post their thoughts or their feelings, if others disagree, that's fine but to put their arguments on her blog us unfair. To argue about CP and DS on a post of hers that was about how she was feeling when the uninformed woman asked her that question that day is not appropriate on her blog. I as her mother know first hand her thoughts and fears and worry's. I personally cringed when she told me the story with that lady at the ball park. Not because it would have been the end of the world had Liam been a DS baby, but because he isn't and it was inappropriate and it showed the struggles that he and she will have when people open their mouth without thinking beforehand. Please respect hers when she speaks them on here. Thanks to all of you who continue to support her through her blog.

K said...

If anything I said has "alienated" anyone I do apologize. There was no intent to insult or offend anyone, or to, "improve awareness of DS" or anything. I planned to post once and be done with it, until my experiences were questioned and my intelligence insulted. I understand what is being said here and agree wholeheartedly with the sentiment that it is out of line to comment on a child's disability, regardless of what it is. (and the touching...UGH! NO arguements from me on this one, even if you have a perfectly healthy child!) I've never been good at expressing my thoughts clearly in words, and I think what I said was not taken the way I meant it to be. Please do let me try one last time and I will be gone. (From posting here anyways...I still enjoy checking for updates and pics of Liam and cheer with every bit of progress he makes!)

Blogs like this are a magnet for women who's children have developmental delays...which includes children with Down's (and really, I have no secret agenda to defend those with Down's...I would be voicing my opinion if it had been any other disorder/disability being discussed). Just think, if you had a child with Down's and you stumbled across this post, how would some of the comments (yes, Jennifer's comments to an extent, but more importantly, the comments of some of the readers) make you feel? Yes, I get that many of you are focused on CP, but is it so bad that one suggest some sensitivity towards ALL disabilities? That was my point. I have said my piece and will leave you to ruminate on it.