The Amish Kids

[Crackedeggs]

So we spent a snowy Friday in a large Children's hopsital for my Ehlers-Danlos daughter, having a bunch of potential sub issues, and a heaping side order of respiratory problems ( diagnosis asthma) and hives ( diagnosis dust mite and dog allergy, as well as "chronic uticura") taken care of. In one of the offices we went to, there were 7 Amish kids, ranging in age from about 10 down to about 2, alone in the waiting room. Mom was in with the patient. At first, they formed a circle of sorts, sitting back to back in a row of chairs that were of that configuration, the two littler ones sort of orbiting close to them, but all of them eyeing the one ghetto-chic black woman, a white woman in pants, an asian woman, and my redneck-chic daughter and I. ( I was in mens jeans, as usual) The were afraid at first. The Ghetto fabulous woman starting talking to them, just going on and on with a story about one of her kids. Because her back was to us, we missed some of what she was saying, I would have loved to have heard more, but didn't want to be too obvious. The kids started to relax ever so slightly.

 

Then the white woman and the asian woman ( all seated closer than us) also started talking to the older kids. They relaxed enough to let their two little sisters start running around the waiting room more.

 

Then, my daughter's very loud ringtone of Katie Perry went off. She pulled out her zebra covered Iphone... and one of the older girls, who looked to be twins, cracked the widest smile. They all started craning their necks to see her Iphone. The two little ones forgotten, just started running all around. One ran to the door, and a woman caught her up in her arms - another men's jean wearing, short haired woman, and started telling her how cute she was. The one girl gingerly approached my daughter, who looked up, caught her eye, and returned the smile. The Amish girl lit up like a Christmas tree.

 

Before we could start showing her Angry Birds, we got called back.

 

After we were done, in another part of the hospital, we saw the family again. This time Mom was there, with the baby who must have been the patient. The other kids all clustered around mom and ignored us.

 

But not Iphone girl. She took a few steps toward us and smiled widely, meeting our eyes. We did the same.

 

I said to my daughter " That one will be leaving them in a few years".

 

I wish I could have given her our address. I wish her well.

 

Edited to add: My daughter wondered aloud, after we saw Iphone girl with her mother again, if it could be considered child abuse to be forced to grow up Amish.

[candycanehead]

i dont know..when we lived in missouri, all of the amish there had cellphones and stuff and were very friendly. well, MOST of them anyways.

[bananacat]

Amish are a little different than other fundies. While there are some who are certainly strict, most of them are pretty accepting of the outside world. They seem like fundies on the surface, but they have the same rules for different reasons. They don't ban cell phones because they fear they will corrupt their kids or because they want to keep their kids isolated.

[Daenerys]

Shoutout to a fellow Ehlers-Danlos person! You don't find too many of us around, even on the web!

[NurseNell]

So we spent a snowy Friday in a large Children's hopsital for my Ehlers-Danlos daughter,

I'm sorry your daughter has Ehlers-Danlos, that's a hard diagnosis to come to terms with. I have one friend with it and knew another but they had adult onset. Good luck to you and your daughter.

[gracelesstraitor]

When I went to college in Lancaster County, PA I worked at Radio Shack. We had Amish customers come in relatively often to buy cell phones, and this was about 13 years ago, when cell phones were a lot less ubiquitous. My understanding is that many (though not the most conservative) Amish saw cell phones as a necessary thing in order to operate a viable business. They would charge them at "English" neighbors houses, and in many (possibly most) cases would not bring them into the house.

This was also right around the time that the Amish drug gangs (seriously) were busted, and CNN was beating down the doors of all of the Sociology professors on campus for comments.

[Crackedeggs]

Regarding Ehlers-Danlos: We both have it. Neither of us knew it until her repeated, strange injuries wound us up in a genetics clinic in this institution. I always thought I was just really flexible. Her, too. My daughter is worse than I am, and of course more pigheaded, and determined to do things she probably should not do. I didn't know I had it, so I didn't know that, for example, mountain bike riding was not a good idea for me. Trying to convince her of what she should and should not do is not easy. But hey, we can walk with our toes pointing at 90 degree angles from where they should, our elbows give us the straight arm, then the down about 10-20 degree arm position, we can put our heels on our heads, and she can pull her thumb flat on her arm, LOL. We could always go on the road as the Rubber Band Girls.

Seriously, though, it sucks. I have a very bad ankle from it, and can't afford any treatment. There are days when it hurts so much I have to put my weight on a shopping cart to get around. The other night, she sneezed and both legs popped out of her hips. ( We rotate them gently to get them back in) We keep keeping on, what else is there to do? The popping sounds my ankles make when I rotate them in full circles are really interesting, and the way she can turn herself around halfway backwards to "crack her back" is a true wonder.

I hope the Amish girl is happy. She was really cute.

[Daenerys]

Regarding Ehlers-Danlos: We both have it. Neither of us knew it until her repeated, strange injuries wound us up in a genetics clinic in this institution. I always thought I was just really flexible. Her, too. My daughter is worse than I am, and of course more pigheaded, and determined to do things she probably should not do. I didn't know I had it, so I didn't know that, for example, mountain bike riding was not a good idea for me. Trying to convince her of what she should and should not do is not easy. But hey, we can walk with our toes pointing at 90 degree angles from where they should, our elbows give us the straight arm, then the down about 10-20 degree arm position, we can put our heels on our heads, and she can pull her thumb flat on her arm, LOL. We could always go on the road as the Rubber Band Girls.

Seriously, though, it sucks. I have a very bad ankle from it, and can't afford any treatment. There are days when it hurts so much I have to put my weight on a shopping cart to get around. The other night, she sneezed and both legs popped out of her hips. ( We rotate them gently to get them back in) We keep keeping on, what else is there to do? The popping sounds my ankles make when I rotate them in full circles are really interesting, and the way she can turn herself around halfway backwards to "crack her back" is a true wonder.

I hope the Amish girl is happy. She was really cute.

I'm not the only one in my family who has it, but the only one who's actually got a diagnosis of sorts (off a podiatrist). My mum almost definitely has it: she has baby-soft skin, is ridiculously flexible for a woman in her 50s, has suffered back problems since she was pregnant and now has terrible stiff painful joints, though not arthritis at the moment.

I find I've developed a lot of weird coping mechanisms out of necessity, and sometimes I'm good enough that I can go ages forgetting I have it, until I do something painful that reminds me why it's a bad idea.

I have very flat feet, so to prevent them turning in I walk on the outer rims because even though I am under the NHS, no one would give me ankle splints of any kind because they only wanted to give me insoles which don't bloody work! I also tend to avoid exercising vigorously: I walk a lot, at least 3 miles a day, but don't do anything that could be called a 'sport'. I used to do rowing but every roll of the oar required me to relocate my shoulder which hurt after a while (I don't always find subs painful) and in a race I got my hip stuck halfway out the socket which was horrendous. I often get ankle issues so I can't really run which makes people think I'm lazy as hell! The worst was probably when I cracked my wrist doing a bridge in gymnastics. I used to be a gymnast (a rubbish one) and had a 45 degree oversplit, but I'm not quite that flexible any more.

One of the major things that concerns me is pregnancy, because it's what permanently damaged my mum's back. Also, I know your joints get looser because of hormones in preparation for labour, and I think if my ankles got much looser they'd be sliding out multiple times a day which would be a nightmare. The other thing is that nobody really has just one type, and there's always the concern that it could end up being vascular and affect the heart.

I'm slightly jealous that you can do a proper scorpion, my hypermobility doesn't extend to my back and I always wanted to be able to do that as a kid! I do get 9/9 on the beighton though as that's not a criteria. I also can't really circle my wrists and ankles without painful clicks and pops, but at least that's not something I have to do everyday (unlike straighten my elbows, which dislocate if I leave them bent too long).

Random question for everyone: if you pull a finger or toe, do the joints come apart and leave gaps? I've never been able to work out if this is related to EDS or not!

[Rachel333]

Random question for everyone: if you pull a finger or toe, do the joints come apart and leave gaps? I've never been able to work out if this is related to EDS or not!

Mine do (so do my shoulders, which really freaks people out; I actually can't pull on anything without it happening). I don't have EDS, but I do have very flexible joints, and I'm also curious if other people can do that. I've had multiple doctors separately suggest I have a genetic disorder (Marfan syndrome) that has joint hyper-mobility as a symptom, but I've never tried to get an actual diagnosis.

[Daenerys]

Mine do (so do my shoulders, which really freaks people out; I actually can't pull on anything without it happening). I don't have EDS, but I do have very flexible joints, and I'm also curious if other people can do that. I've had multiple doctors separately suggest I have a genetic disorder (Marfan syndrome) that has joint hyper-mobility as a symptom, but I've never tried to get an actual diagnosis.

That's interesting, Marfan Syndrome is one of the conditions that can easily be confused with EDS as there's a lot of crossover: though only if you're a tall person and I'm 5'6". Did you know Michael Phelps is a Marfan and that's a big part of why he's such an amazing swimmer?

[valsa]

My daughter wondered aloud, after we saw Iphone girl with her mother again, if it could be considered child abuse to be forced to grow up Amish.

I wouldn't consider growing up Amish itself to be abusive. A lot of crunchy hippie type parents also do the whole "live simply and off the land" thing (I know that's not the whole of Amish beliefs but technology seems to be the focus of your post) However, the Amish community does have serious issues that can be abusive (rampant, unreported sexual abuse is one)

[Crackedeggs]

I wouldn't consider growing up Amish itself to be abusive. A lot of crunchy hippie type parents also do the whole "live simply and off the land" thing (I know that's not the whole of Amish beliefs but technology seems to be the focus of your post) However, the Amish community does have serious issues that can be abusive (rampant, unreported sexual abuse is one)

I like the live off the land, low on the food chain, unprocessed kind of lifestyle too, to an extent. (that would not be to the extent that Michael Pearl's daughter was forced to live) I've read some pretty nasty stories, particularly about the Schwartzentrubber Amish ( AmishAbuse.com).

[emmiedahl]

If it is abuse to not have an iPhone, then I am a child abuser.

Not to imply that there is not *a lot* of abuse in the Amish community, but I just won't buy that stuff and I don't think the children are worse off for it. My kids are free to buy it themselves or beg from grandparents. Amish teens are allowed to do the same during rumschpringe.

[Crackedeggs]

If it is abuse to not have an iPhone, then I am a child abuser.

Not to imply that there is not *a lot* of abuse in the Amish community, but I just won't buy that stuff and I don't think the children are worse off for it. My kids are free to buy it themselves or beg from grandparents. Amish teens are allowed to do the same during rumschpringe.

Grandparents. They spoil her rotten. I sure can't afford that stuff!

[Rachel333]

It's not the lack of technology that bothers me about the Amish, but the patriarchy and limited education and shunning. I don't think they're much better than other fundies.

[terranova]

I like the live off the land, low on the food chain, unprocessed kind of lifestyle too, to an extent. (that would not be to the extent that Michael Pearl's daughter was forced to live) I've read some pretty nasty stories, particularly about the Schwartzentrubber Amish ( AmishAbuse.com).

Had a look at that website. What a horribly harsh way to live your life. I feel for the children (and adults) who want to escape but can't. :(

[emmiedahl]

Grandparents. They spoil her rotten. I sure can't afford that stuff!

Yeah, my 16 yo has an iPhone and an iPad from grandparents. I totally get it. Doesn't it suck when your kids have nicer stuff than you do? :lol:

[DarkAnts]

Yeah, my 16 yo has an iPhone and an iPad from grandparents. I totally get it. Doesn't it suck when your kids have nicer stuff than you do? :lol:

Can I be your daughter? :pray: We can split the loot 50/50.

[Ralar]

Shoutout to a fellow Ehlers-Danlos person! You don't find too many of us around, even on the web!

A third EDS person here.

[LeatherCouch]

I'm another EDS'er! 4 of my kids have it too, as do other, extended family members.

[Ralar]

Seriously, though, it sucks. I have a very bad ankle from it

I've got the ankle thing going on also. I sustained a severe sprain, which did not improve after immobilization followed by pt. The orthopedist was recommending surgery to repair "my ruptured ligaments," until an MRI revealed they were all intact, just extremely loose. I fell regularly due to the ankle instability. I recently underwent a rotator cuff repair as a result of a fall --my ankle gave out. I can hyperextended my knees 30 degrees and do the thumb to forearm thing.

[rach]

@Crackedeggs: Not sure on how to send msgs. yet (I'm new here).

But like you and your daughter, I (and my twin) also have EDS - Type 3.

My twin sister is a big advocate here in Canada and is very active within the zebra community.

Just wanted to mention that if you or your daughter needs information, support or just want to have a laugh online; I can connect you guys.

With regards to the Amish kids; Southern Ontario has a large Mennonite community called St. Jacob's. My sister and I were shopping at the local outdoor market and had to stop to change batteries in out discman(s). (This was obviously quite a while ago). We met a little girl who was so very interested in the CD and how the whole thing worked. Her mother was nice enough to let her listen for a few minutes (we chose an appropriate song) and thanked us for letting her daughter have a new experience. :D

[rach]

What's with Gumby people and interest with fundies? Seriously though, I know of a whole bunch of EDS folk who frequent boards like these.

I'm very surprised (and happy) to see so many other EDS people out there : )

Maybe it's more common than doctors think.

[Angri-la]

nevermind. wrong thread.

[fundifugee]

1. Amish and cell phones - it is my understanding that Amish are allowed to use technology to make a living. Thus the Amish furniture makers with websites, electrified workshops, computers, phones, ATM cards, etc. However, the houses are not electrified and the phones have to stay in the shop.

2. Ehrlos-Danlos - I don't have it, but I had a wonderful patient when I was in med school who taught me about it. She had a very severe variety and her parents were told to expect her to be confined to a wheelchair eventually. Instead, she became an incredible athlete. She outswam me at the pool every day and was the phys ed teacher at the local high school. She paid special attention to strengthening the muscles that support the more mobile of her joints first (rotator cuff especially), then went to town with the weights and the swimming. She was absolutely ripped, and she held her very lax joints together with muscle, since her ligaments could not be relied upon. She's an inspiration and I am grateful to her for the lessons she taught about life, perseverance and innovation.