Tuesday, October 31, 2006

Frustration

After reading a post over at Down Syndrome Life about people's reactions to his daughter, it helped to in a sense inspire a post that's been brewing up inside of me. We haven't had the issue of people staring at us until recently when Joey got his helmet. People would be staring even if I didn't paint it so I know that's not why people are staring, they're staring because he's wearing the darn thing. For me, it's going to be worth it for him to have a nice round head and not one with a HUGE flat spot on the back. Not to mention I think it's kinda cute! I wish he wouldn't need to wear it, but since he does, I'm making the most of out it! Anyways, first example of people... our first time out after the helmet was at church. I was holding Joey as we were walking up for communion and I could FEEL the people staring at us. My husband said everyone turned their heads and started whispering to each other. Grrr...

Then, last week I took him to the BJ's Wholesale Store and I literally had 20 people stop me and ask about the helmet. One guy actually had the nerve to say, "so what does he have water on the brain or something", I calmly replied back, "no, my son has down syndrome and his bones are softer and that caused his head to have a flat spot".

I know that people don't always realize that they're staring but geez... it kinda hurts. The older Joey gets, more of his facial features are becoming noticeable and people will be staring at him because he has Down Syndrome. Does anyone have any advice on how to handle people who stare? Besides what my husband does, he glares right back at the people. Some people have great comments about his helmet and how cute I made it, others like the jerk at BJ's have no common sense in what to say to someone. I don't really know where I'm going with this post, but I felt the need to vent/ ramble.

8 comments:

Michelle said...

It is frustrating...I haven't encountered too many times of people staring, but sometimes I can just "feel" it. I end up ignoring people when that happens, not sure if that is the "right' thing to do, but I never know what to say.

There are babies that don't have Down syndrome and have to wear a helmet because of the flat spot, so they are probably staring because of the helmet, and not the Ds...and he's not wearing a helmet just because of the Ds - did that make sense?! LOL

You did a great job with the helmet too! People are curious and they are going to stare (and he's too cute not to look!) but yeah, the guy didn't have to ask that question either, some people don't know to think before they speak!

Christina said...

A friend of mine told me this: they were at an amusement park in Sweden, and there was a person there with some kind of handicap. I do not remember what it was exactly, but it was a man in his 20s with some kind of handicap. He had his keys in one of those keychains that many kids/teenagers use for their keys/cell phones that hang around your neck. You could see that there was some kind of writing on his, and it was rather bright, as they looked closer (not because he was handicapped, but because of the bright color of the keychain) they saw that it said "WHAT ARE YOU STARING AT". Thought that was kind of cool :-)
Great news on Joey's progress too. excellent!

Amy said...

Different situations but we get stares because Anna is adopted. Sometimes we get comments that are out there and just plain rude - "had to buy a daughter", etc.
Most of the time people are staring out of curiosity and I try to keep this is mind. Hopefully by stepping out and being "normal" we are showing them "Hey! This works and it's great!"
I am sure people are just checking out the helmet. More and more it's in the news r/t the back to sleep thing and I think people are thinking "Hey! That's what I've been reading about!" Let them look and think to yourself "I'm showing them that it's OK! We're just an everyday family and it's working!"
Blessings girl. I admire your strength, courage, and honesty.
Amy

Adventures In Babywearing said...

Oh wow, I am just now reading here for the first time. Your baby is so precious.

My son had to wear a helmet because of his epilepsy. I hated going out in public because of all the comments. It IS frustrating, and my son was old enough to hear what people would say. One time the nicest old man made up over him saying how he looked like a football player (even though his helmet was PT one), etc- and he never asked why he had to wear the helmet. I try to remember people like that!

Ma said...

You shouldn't feel so bad. People who stare or make fun are idiots and inconsiderate. They don't care that they hurt other people's feelings. I used to take care of a mongoloid child and I would get the same reaction from people. The parents of the girl ended up putting her in a home cause they couldn't take care of her at home. It really saddened me to see them do that.

Thanks for dropping by.

janice said...

I agree with Michelle.

(I too have known other children to wear a helmet and they didn't have Down syndrome.)

Often I think that people don't mean to stare. They don't even realize they are doing it. And yes - sometimes they are just insensitive and ignorant.

I imagine it must be really hard for you all.

When I was a teenager and in my early twenties I was often in a wheelchair because of a long term illness that I have. Although I am not comparing that to having Down syndrome or knowing what you are going through, I do remember the looks I got, people just wondering what was wrong with me. They were just trying to assess what my situation was. Especially when I got up out of the chair and sat at a chair in a restaurant or walked into a changing room to try on some clothes. They stared and wondered. Yes people felt sorry for me. I suppose they thought I had cancer or something. I don't know. As I said I don't think they knew what they thought. But they did stare. And yes sometimes I resented it.

But your son will know from the love that you give him that he is perfect the way he is. He will have the self esteem you give him to face those looks.

When we are loved so deeply by those that matter most, it does really help to give us the courage and the confidence to understand that though not everyone will react correctly, we are still ok.

Overwhelmed! said...

Jessica,

I'm sorry to hear of your frustrations but I do understand those frustrations.

Something grabbed my attention as I read your post. It was the part when you said 20 people stopped to ask you about the helmet.

To me, the action of stopping to ask you questions might be viewed as encouraging, except for the guy who rudely asked about water on the brain. Unfortunately, there will always be rude people out there like that and all we can do is pray for them to change for the better.

Let me share my own perspective with you, in the hopes that it will help a bit.

I've walked with a limp all my life due to degenerative hip displasia. Year after year the limp got worse as cartilage around my hip sockets wore away and it became bone rubbing against bone.

Not only was I in a lot of pain (as a child and as an adult), but I had to deal with people always starring. It was hard.

In my experience, I was actually GRATEFUL for those that took the time to walk up to me and ask questions about why I limped. Rather than stare and ignore me afterwards, they took the time to ask questions to try to understand. Yes, some people had a tendancy to ask rude questions from time to time, that was unavoidable, but overall I still appreciated people making the effort to face me rather than shun me and stare at me as if I were a freak.

In 2001 I had two total hip replacements. Now the pain is gone and I only walk with a very slight limp. I don't get nearly the amount of stares anymore.

As an adult, when I see a person or a child that might be handicapped in some way, I make an effort to approach that person, if not to ask a question than to engage them in friendly conversation. If that's not possible, than I do my best not to stare.

As Amy stated, most of the time people are staring out of curiosity. They don't mean to be rude. Try not to allow those stares to upset you too much. Just go about your business of loving your son and husband and try not to worry about what others think.

Hang in there, okay?

LauraJ said...

I got this post through bloglines, it's a little late but I'd like to comment anyway. You asked if there was any way to deal with the stares and rude comments. Over time as Joey grows up you will become immune to the ignorance of others. It's also based on your maturity level as well. I'm not the same parent I was when A was first born by far. I remember the rude people and I was rude right back, it didn't get very far though and it didnt make me feel nice in the end. Now that A is 7 (he's in a wheelchair and is not DS but he does have special needs so I do know what I'm talking about at least to some extent) I have learned that you hold your head up high and smile. Be the proudest parent you can be and build a thicker skin. I think it's the hardest thing as a parent is dealing with society and people in general who just dont know.