Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, June 05, 2011

When People Stare

While reading this post it's possible you will see my snarky side come out. Just say'in....

When my boys were little we stood out a little. Four boys within 4 years, two of them looking like twins might make you stand out. Sometimes.

What amazed me the most is the questions strangers...felt they had the right to ask me when we were out in public places. That, and the fact they acted as if I owed them an answer. Some days I was cordial and friendly, but sometimes people just got under my skin. I came up with some scripts for when I really just wanted to put people in their place a bit, or at least mess with their heads some.

Question from total stranger: "Are they all yours?"

My answers:
" you mean did I borrow some?"
Or turning around looking shocked, "What? I thought some of them were YOURS!"

Comment by total stranger:  "Wow, you sure were busy!"

My response: "What do you mean?" (in other words, you just made a comment about my sex life, but I'm going to make you explain your front of my kids!"

Comment from total strangers: "Took you awhile to figure out what caused that, huh?"

My response: "Took your mother awhile too, apparently!"

When Angela came along, the comments were of a different variety. First of all, she was beautiful (of course!) but she also looked MUCH younger than she was. At a year she looked like a 5 month old baby. At 2 she looked like a 12 month old, and at 3 she looked to be about 18 months. Even now, at 15, she looks like a 10 year old.

Not only did people ask how old she was, but when she was old enough to understand the conversation it really annoyed me that people would ask me questions with her standing right there, or talk as if she wasn't standing there!

Question from total stranger, who happened to be 60'ish, while standing in a check out line. Angela was about 8: "She's adorable. How old is she?"

Me, to Angela: "Angela, this lady asked how old you are." Angela to lady, "I'm 8. How old are you?"
stranger response: "Oh, I don't tell my age."
Me: "Not fair. You asked her age, she just asked you back. If you don't want to share, you shouldn't expect her to."

Don't get me wrong. Most of the time I will answer people's questions nicely, or even respond politely with, "I'm sorry, but I don't talk about my kids in front of them." It's only those who ask in a particularly rude way that get my snarky responses.

So fast forward a few years, and we now have Axel. Two kids with DS. I get the "Are they both yours?" question a lot. . There are times when it's appropriate to share Axel's story, and the possibility of adoption with others, and there are times when it's completely inappropriate. In that case I just answer with "Yes" and turn away to end the discussion right there.

But now Axel is in a halo. It's not every day you see a kid in a halo, in a restaurant looking and walking a bit like frankenstein. People are bound to want to look.

I don't mind kids staring. It is natural, and they're just curious. The don't know what the thing is on that kid's head and they have questions. It's the adult who tick me off. Twice in the last week grown adults have literally turned around in their seat to stare at Axel. I'll admit, I am not very nice about this. I have stared directly back at them until they finally peel their eyes off Axel and realize I'm staring back, at which time they quickly turn around embarrassed. I have also turned to them and said, "Staring is rude."

I have also had people come over to get a close up look at the halo. They want to get right over the top of him to see how the screws go into his head! No really...people DO THIS! I had people comment about the incision scar on the back of his neck (that is still kind of crusty looking.) saying things like, "I couldn't look at that every day." This one irritates me. You know, Axel has no idea what the back of his neck looks like, thank you, so SHUT UP!

The two biggest questions we get are, "Does it hurt?" and "How does he sleep?"

So here's your chance. Here's your opportunity to ask whatever halo related questions you can think of, and I will answer them as best I can so the next time you see some kid in a halo, you won't feel the need to stare. In fact, you can ask non-halo related questions too! And hey, if you can think of any good comebacks to these questions, please post them!


Stephanie @ Ralphcrew said...

OK, how can you stand the complete and utter cuteness? I mean, really, I could never take it. You must be a saint. ;)

Jacinta said...

Ok... so questions I would NEVER approach somebody and ask (and I'm not a starer either)... but since you offered.

1. What does it look like where the screws go into his head? How do you stop germs entering his skull -- is the area around the screws sealed somehow?

2. Are you afraid of what would happen to the kids if you and your husband died before them? What about when you're too old or sick to look after them? (This is what worries me about adopting a child with special needs).

3. How do you prefer adults deal with their child's curiosity? My son (18 months) was so interested in another kid's walking frame (he was maybe 8). I didn't let him touch, of course, but I just didn't know how to handle it so I distracted him (he was not happy, he wanted a turn!). When he's older and says ''HEY MOM!! Why's that kid...?'' what should I do?

doozee said...

You are probably going to hate me, but I'm not only the adult that stares, I'm the adult that asks about things and comments on the obvious ("Oh, is that a TUMOR on your head?").

But it's not because I'm not aware that it's rude.

I do it because I went through the windshield of a car when I was 4. I was covered in scars, started school with a shaved head and yes, was teased mercilessly. Then I had glasses (the super thick, coke bottle type). Then medical-issue huge wrap-around hearing aids.

I was SO SICK of people pretending to not see what I knew was there. SO SICK of people turning away "politely". SO SICK of people not acknowledging what I KNEW they were looking at and wondering about.

That is why I ask. And acknowledge. And stare (but it's more truthful to say that IF I stare, I get up and go over and talk). I was walking in those 'stared at' shoes for a long, long, long time....

But I know not everyone is the same as I and I need to be told how it is for others that don't feel the same. I'd hate to make someone more uncomfortable by my actions, so I appreciate this post!

Kathie Brinkman said...

As far as the halo questions--here's a snarky response for ya: "Oh, the halo? Axel has it because he's an angel."
Do I win a prize for the best comeback? lol
btw, treehouse is done.

Jillian said...

When I was young my dad had a halo. Obviously it sucked, but a fun thing we did was decorate it. Some magnets would stick to certain bars, and we would use magnetic poetry to write comments for when people would stare.

Another thing we did was get Xmas lights or small neon lights with battery packs and decorate his bars when we went out at night.

I'm sorry people can be so rude.

Taylor said...

Love Jillian's idea about decorating the halo, and LOVE Kathie's comeback suggestion! :-)

My questions:

1. Like Jacinta, I'm curious how you keep the pin sites from getting infected. What's involved with pin care?

2. What exactly does the spinal fusion surgery do? Strengthen the spine somehow, I assume?

3. How long will Axel have to wear the halo for? After it comes off, what's next - more neck braces? What all is involved in this surgery/rehab treatment process?

4. In one of your posts before surgery, you were discussing potential options, and you showed a picture of a non-invasive halo with no pins. Why couldn't Axel get that one? It looks like it would have the same effect, but without the extra discomfort, pin care, etc.

That's all I can think of for now. Hugs to your little spider monkey! :-)

Erika said...

Hi Leah,

I love Kathie's comeback! Use it! And my question is how would you feel if someone approached you to tell you that they hope Axel is healing well and that they would pray for you? I've often thought to do that, but don't want to make the person uncomfortable. I did have the opportunity to meet a local family who has a child with various medical needs. I follow them of facebook and they were thrilled I intoduced myself and that I told them that we will continue to pray for their family. I am a nurse, so I have no medical halo questions, but I do enjoy reading your take on how the halo is "doing". Oh and I like to read about Angela too. I think of her when I see "Dog the Bounty Hunter". :-)
Praying for your family!

Erika in WI

Becky said...

When are you going ot buy a shirt for him that says 'I'll pose for a picture if you stop staring at me'. :)