My jra daughter went to her first sleepover a couple weeks ago. I had expected to have to deal with her feeling different at times due to her jra, maybe one day from limited activities or any number things that can occur with this disease.
She wears a night splint, so I left it up to her if she wanted to use it or not. I thought skipping one night wouldn't matter, if it would make her self-conscious.
But she said she wanted to wear it, and she did.
Last week, she said one of her friends thinks she has arthritis now and needs a night splint. Then another friend decided she might have arthritis, too! I told my daughter I didn't think they really had arthritis, but I was glad they liked her splint and that she should remind them how much school misses to go to the doctor for arthritis and they wouldn't really like that part.
Well. This weekend the same crowd was together again, and my older daughter overheard the girls talking about my jra daughter and being mean.
Mean! What were they saying?
"They said she didn't have arthritis."
Okay, how screwy is this???? They are jealous enough of a night splint to think they want arthritis, then when that doesn't work out, they decide she is making it up????
my youngest son has a life threatening nut allergy. He had a potential exposure at school that caused some concern with the lunchroom staff... although it turned out to be nothing. After that it was amazing how many students came down with "severe allergies". We've also had a recent rash of kids needing glasses after one little girl got them. Kids want to be special, so they find themselves wishing for the things they think make other people special. I actually remember being jealous of my best friend when she broke her leg!
Encourage your daughter to ignore this as much as she can. After all, she does not need to prove her diagnoses to her friends. This will blow over as soon as someone else shows up at school in a cast. leila2009-03-30 11:20:14
[QUOTE=leila]
After all, she does not need to prove her diagnoses to her friends. [/QUOTE]
That is what I'm so upset about - we try not make her dx an issue. I was worried she would get picked on for the night splint, but in hindsight, it would have better to leave it at home for the opposite reason!
I know what you mean about the 'epidemics', though. After my older daughter needed an inhaler, she came home and said a friend told her, "If I ever need an inhaler, I'm going to get a purple one."
The next day I was on the phone with the girl's mom while our daughters were at basketball camp together. The mom took a call on her other line and came back flustered and said, "I need to go get (daughter) and take her to the doctor, she says she can't breath!". She sounded so scared and I was afraid something really might be wrong, so I didn't say anything! Surprise surprise, nothing was wrong.
Leila - peanut allergy - have you heard about the new therapy where they give the child a teeny tiny bit of peanuts under drs. supervision until they build up to not being as life-threateningly allergic? They still can't eat them, I don't think, but you don't have to worry about accidents as much.
Suzanne, I really had to laugh at this. You just never can figure kids, can you?
When I was working at a middle school, I was amazed at the reaction of the students when someone came in needing crutches or a wheelchair - they all seemed jealous of the attention that it brought, and would beg to borrow the crutches for one period! Also, the school always assigned a student to go with the person and be a buddy, carrying their books etc. There was never a problem getting someone to volunteer - they always felt it was a special privilege!
I can remember when I was in high school wishing I needed glasses, because friends would come in with new glasses that I really thought looked cool. I'm sure they were wishing they didn't need glasses!
It's all about attitude. If your daughter acts like her night brace is cool, everyone will want one! She should bedazzle it! I think your daughter should do what she needs to do, and if that means wearing a splint then so be it. I know it's so hard when your kids are different and you just want them to be accepted. My youngest two daughter are adopted which is obvious because they are a different race than I am. The youngest of these two is obviously disabled. It's hard sometimes to hear how kids talk about my daughters, or to listen to the questions they ask. They ARE different. And children are largely self centered and tactless. But so far it has been our experience that kids don't focus on any one thing for too long. So they ask their questions, make their comments, and get on with it.
But believe me Suzanne, I know much it hurts a mom's heart when their baby gets singled out like that.
My pediatrician said NO to the peanut tolerance thing. My son is allergic to every nut, with peanuts presenting the smallest threat (But still quite capable of ending his life). The Dr felt it was too dangerous.
Although it's getting better, you'd be suprized how many people still treat me like a paranoid mom for insisting that he have NO contact with nuts. Not even "just for an art project".
Take care Suzanne. I can't imagine having a child with jra. You are a strong mommy!Thanks ladies!
I'm remembering a friend who wanted braces so bad, she put aluminum foil on her teeth! And the inhaler- fake also got 'glasses' right after another friend actually needed some.
But in all these examples I can think of, no one ever accused the originator of the trend of not really need whatever it was they were all copying!!! That is what gets to me - who would lie about needing a night splint???
Leila - nuts for an art project? Oh my, I can't imagine anyone even suggesting that! But you know what? Even if the moms are clueless, I guarantee you that your child's friends all know what to do! Both my girls will still ask me about the ingredients of any new cookie, etc. - and then declare, 'Well, Charlie couldn't have them, then" LOL. We don't even see Charlie anymore!
Leila and Suzanne -
My daughter had a bad reaction to peas when she was starting on solid foods and we never allowed her to have anything with nuts until they would test her at 3. At two she started saying 'no nuts' to ANYTHING. Now, at 8, she still won't eat them, 'just in case' and tells people she's allergic. I'm like "you are not!".
I don't know how you deal with such allergies - you can't count on other kids not to push another kid into something and you certainly can't count on the mom to say that the cookies were made 'peanut free'. We had a case of a kid ending up in the hospital when the mom used the same spatula for different cookie batches.
Hugs,
Pip
You would never believe how many people like to roll a pine cone in peanut butter to make a bird feeder. I had no idea birds had such a passion for it! Also a problem is using walnut halves as a painting implement. Not to mention our local steak house that gives you whole peanuts as an appetizer and encourages you to throw the shells on the ground. My fil once told me I was paranoid for not taking our son their. After all " He doesn't have to EAT them". But several years later he was able to witness an exposure that he inadvertantly caused, and since then he's been a believer!
You are absolutely right about other kids Suzanne. Parents tell me that their children have been compulsive "nut finders" since knowing our son!
Maybe younger kids are believers - the older ones are like adults.
Too true Pip
Alex is really careful. He is too scared not to pay attention to what he eats. His first symptoms tend to be pain ( with the swelling) and vomiting. He also knows he'll be going to the hospital and one way or another he is getting a SHOT ( that's what my kids thought the 's' word was) hehe.... So anyway, in Alex's mind, no cookie is worth that! Of course we've told him he could potentially die, which would also be a drag!
I remember talking to one dad who was going on and on about all the kids that have 'asthma' and 'allergies' these days, and how paranoid and soft we'd all become. He said " where were all these allergies when I was a kid? We never had anyone in our school who couldn't eat a pb&j. Where were all the peanut allergy kids then?". Simple, I said, they were probably already dead.
Boy I can be a buzz kill when I want to be!
The friends I did have when I was a kid, I never told them I had arthritis. I did not start telling what little friends (2) I had arthritis until I was a teenager and only because RA seemed to affect me more.
When I missed a lot of school when I was in elementery school I had no friends, because I missed that many days. I missed so many days in kidnergarden that I had to repeat kidnergarden. And I was always a straight "C" student.
I had to wear casts on my legs at night when I was first DXed, and all the way up until well into the 3rd grade.
My siblings were the ones who thought our mom just babied me and dressed me because I did not want to go to school. It was because I had morning stiffness and could not do it myself.
Joonie -
That is really sad and I think it's amazing you eventually developed such a funny fantastic view of life from that. The power of the human mind...
Leila - good on you for being a buzz kill - I agree in principal but the Great U when they did my daughters testing told me 'something is going on because the numbers have jumped dramatically in the last dozen years.' They also told me that different areas of the world have different triggers - like in Isreal the trigger is seseme vs peanuts here. I found that odd.
Pip
I remember when I was a kid that at all the fairs, one of the booths you could get your very own cast. The kids just have no ability to perceive what an injury or illness really means, just the extra attention you get...not much you can do about that I guess...Kids.............(sigh)
they can be so mean to sick kids and anyone that doesn;t fit into their "clique". The "mean" kids that say "mean things" grow up to be adults, at least some make it that far, many don't.
Your daughter will undoubtedly have to learn from a very young age that what other people think doesn't matter, it is only her, the individual that matters.Some will accept her for who she is and others will be "mean" and talk and gossip behind her back, she may get drift of it or a friend will and feelings could be hurt.
As a great and wise friend of mine tells me, RISE ABOVE IT
that is really hard to do at times but you know what, you have to in order to survive in this world.
[QUOTE=Suzanne]My jra daughter went to her first sleepover a couple weeks ago. I
had expected to have to deal with her feeling different at times due to her jra, maybe one day from limited activities or any number things that can occur with this disease.
She wears a night splint, so I left it up to her if she wanted to use it or not. I thought skipping one night wouldn't matter, if it would make her self-conscious.
But she said she wanted to wear it, and she did.
Last week, she said one of her friends thinks she has arthritis now and needs a night splint. Then another friend decided she might have arthritis, too! I told my daughter I didn't think they really had arthritis, but I was glad they liked her splint and that she should remind them how much school misses to go to the doctor for arthritis and they wouldn't really like that part.
Well. This weekend the same crowd was together again, and my older daughter overheard the girls talking about my jra daughter and being mean.
Mean! What were they saying?
"They said she
didn't have arthritis."
Okay, how screwy is this???? They are jealous enough of a night splint to think they want arthritis, then when that doesn't work out, they decide she is making it up????
[/QUOTE]
Sounds like typical kid behavior to me. Glasses, braces, casts, you name it. It doesn't matter what it is - if the other kid has it, it must be worth having.
You can never tell how kids will react. I'm glad she wore the brace. If she keeps doing what the dr. and mom recommends, the kids will become used to it and it won't be an issue anymore-good or bad. We had an outbreak of "scoliosis(sp?)" last month. One of my girls wears a brace and will be having spinal surgery this summer. She can't carry her books right now so someone has been helping her. Suddenly, they all need help...HUH???? She is also a rather pretty girl so she already had the others copying her. Gotta love kids...Well, I was the girl with scoliosis at my high school and nobody ever wanted to copy THAT! Never wore a brace - at the time, they said I needed
aggressive therapy. So I got surgery that has since failed, and started high school in a body cast that I had to wear for
seven months. Horrible! Good luck to your student - they no longer do the latest, greatest most current state of the art up to date expensive surgery they did to me!
[QUOTE=JasmineRain]
Sounds like typical kid behavior to me. Glasses, braces, casts, you name it. It doesn't matter what it is - if the other kid has it, it must be worth having.Suzanne, that is just amazing what kids will do. I guess when they found out they couldn't really be "special" than neither could your daughter so they had to doubt she had anything wrong. Or maybe when they finally realized that having JRA isn't fun, they didn't want to believe it because it's scary. Either way, I'm sure it will blow over soon.
BTW, the copycat disease thing isn't just in kids. I have Obsessive-Compulsive Disorder (dx'ed 22 years ago, currently in remission) and I used to mention it so that people would understand (and accept) mental illness better, after all when we know people who have it, it becomes less alien. But often the answers I get from adults now are "oh yeah, I'm OCD too" (BTW you can't "be OCD" you can only "have OCD"). OCD isn't just run-of-the-mill obsessive-compulsive behavior, it has to rise to the level of interfering with your ability to live your life in order to be OCD. But many adults don't seem to get that, and like having a name for their little quirks. I used to get myself annoyed over it, especially when these adults have no idea the suffering this disease causes for the patient and those around them, but it's one of the things I've just let go in life.
[QUOTE=Suzanne]
[QUOTE=JasmineRain]
Sounds like typical kid behavior to me. Glasses, braces, casts, you name it. It doesn't matter what it is - if the other kid has it, it must be worth having.
[QUOTE=JasmineRain]
I distinctly remember a couple cases in junior high school that so-n-so "faked" vision problems to get glasses, or that his glasses were "fake" and he got them just to look cool.
[/QUOTE]
Glasses were cool at your junior high? That's a parents' (and opthamologist's) dream!
The girls here do seem partial to the dollar spot fashion readers. No rx needed for those, though. Don't forget your Vera Bradley glasses case, the real reason for the trend, in my opinion LOL.
[QUOTE=Suzanne]
[QUOTE=JasmineRain]
I distinctly remember a couple cases in junior high school that so-n-so "faked" vision problems to get glasses, or that his glasses were "fake" and he got them just to look cool.
[/QUOTE]
Glasses were cool at your junior high? That's a parents' (and opthamologist's) dream!
The girls here do seem partial to the dollar spot fashion readers. No rx needed for those, though. Don't forget your Vera Bradley glasses case, the real reason for the trend, in my opinion LOL.
[/QUOTE]
I ran with the geeks. You weren't really a geek unless you wore glasses. I tried for years to get diagnosed with a vision problem but much to my dismay, the optometrist kept saying I had perfect vision.
I finally got glasses in my 20's.
Or it could just be because kids can be mean. I'm sure it'll blow over really fast either way.
Suzanne- my daughter was the girl in HS with scoliosis too! She was so ashamed (? I could never figure that out) that she refused to tell even her best friend. She had to wear a brace that fit across her chest right under her arms to just below her hips 23 hrs. a day. She wore her coat in school ALL year round so no one would see it under her clothes. It didn't stop her progression so she had the surgery in 1999 and Thank God it was a success for her.
I don't know the answer, but good luck to your daugher!!!
Copyright ArthritisInsight.com