Who is Perfect?

[Pooka1]

Sharon, you are so right! I would also add that you need to model compassion, non-judgemental caring, and an attitude for service to others. Modeling behaviors that you want to teach/convey to your children is essential and powerful. Children learn more from what they observe adults doing/behaving.

If adult behavior is irrational and uncaring, it doesn't matter what is said. Children are then confused about what to do and think, but the observed behavior speaks louder than the words.

It is essential that when parents observe ignorance and intolerance, that they use that as a "teaching/discussion moment".

Susan

Yes I completely agree.

It's like with horses, all riding is training. If you don't know what you are doing the horse learns incorrect stuff and might become dangerous (through no fault of the horse's). If you know what you are doing, the horse becomes highly trained.

Similarly, all interactions between parents and children are parenting. If you know what you are doing, the child grows up to be a good person. If you don't then the child is at a huge disadvantage.

[susancook]

Sharon, I wish that it were as simple as doing all of the right things makes perfect kids. I wish that it was true. My kids are awesome adults, but some of the equation is just plain luck. Susan
Ps: love the horse analogy

[rohrer01]

I have a brother in a bear suit....

He suffers from a rare form of Kleinfelter’s and also lived through a brutal car crash and had resulting brain surgery. He isn’t perfect but does fine. He is a trooper! Now, I need to get him in a casino because his ability to remember and calculate numbers is beyond belief! I feel like Tom Cruise around him just like in the movie “Rainman”. Deep breaths sometimes, but I do need to add a smiley face right here even with all the questions and challenges.


Ed

Isn't Kleinfelter's where there's too many "Y" chromosomes? I'm just testing my human genetics recall. Of course, I can look it up easy enough. Your family has had more than its share of health problems, for sure. It's so amazing that none of them are related. One of my genetics professors has a brother with Willie Prader Syndrome. That's what inspired him to be a geneticist. This syndrome comes with an insatiable appetite for food. They will eat anything and never get satisfied. They also have a degree of mental retardation. So sad, but inspirational at the same time.

NEVER wear the bear suit!

[rohrer01]

just viewed the video- it makes me so very sad. maybe i'm still dealing with myself, maybe it shows deformities too much, I don't know I am so sad now. I feel so deformed.

Scooter,
I'm so sorry you feel sad after watching these videos. It made me feel better. We should never be ashamed of ourselves. We didn't do this and NO ONE has a "perfect" body.

I had a woman come up to me in the store while I was shopping the other day. She'd complimented me a couple of times already on how nice I looked in my dress coat. She was behind me in the check-out line and jokingly asked me to rub her so that some of my "thinness" would rub off on her. So I obliged. Then I told her that I had some sort of muscle wasting disease that made me lose weight and I had trouble eating. My DIL was with me and chimed in on how sick I am. The lady rubbed me and said I could have it back, and that maybe some of her appetite would go to me.

I didn't mean to embarrass the lady at all and we parted very friendly. It's what you don't know about that person that you "think" is so perfect. She wasn't happy with her nice straight back. I never took my jacket off or my overshirt so that she could see my deformity. This was the day that I bought "the dress".

I made a post on FB about it being kind of a reverse discrimination of obesity. Not all thin people can help it, and we are not all well. Although, I have always been thin, I have always been teased about it, too!

So, please, don't feel sad. The point of everything here is that none of us are perfect. That woman saw a "package" that she thought she wanted... until she found out only a fraction of what was wrong with it. Then she became content with her plump, but healthy body!

[titaniumed]

Isn't Kleinfelter's where there's too many "Y" chromosomes?

That’s correct. And many years ago the docs didn’t know squat about it, especially the rare forms.....When he was in the Army in the early 70’s they were the ones that identified it through blood work. You really couldn’t tell with him most of the time, but then he would have these anxiety attacks and freak out. I’m serious about the Tom Cruise thing, I lived that part.....It was an experience let me tell you. He would do things like buy $1000 worth of bottled water if another hurricane was headed his way down in Florida. Stuff like that. (smiley face) My attorney spends more on expensive scotch, but you get the idea.

The car accident he was in almost killed him and they spent 2 hours cutting metal away from him on that one....he was t-boned by a car at 75 right in the drivers side door. He was in the hospital for 6 months and did around 5 hard core surgeries. I would rather do a full fusion.

Yes, I have been exposed to all host of things.....I also have a good friend, a best friend, he being a Thalidomide baby with Phocomelia.
http://en.wikipedia.org/wiki/Phocomelia

When challenges in life are pushed to the limits, you find very special people....

My scoliosis was not even an issue. I just had a curved spine. Simple stuff.....

Ed

[mariaf]

Sharon, you are so right! I would also add that you need to model compassion, non-judgemental caring, and an attitude for service to others. Modeling behaviors that you want to teach/convey to your children is essential and powerful. Children learn more from what they observe adults doing/behaving.

If adult behavior is irrational and uncaring, it doesn't matter what is said. Children are then confused about what to do and think, but the observed behavior speaks louder than the words.

It is essential that when parents observe ignorance and intolerance, that they use that as a "teaching/discussion moment".

Susan

I can't add anything to this post - it says it all.

Back in my day, some parents used to say "do as I say, not as I do". Today we are smart enough to know that doesn't work :-)

[rohrer01]

One of my genetics professors has a brother with Willie Prader Syndrome. That's what inspired him to be a geneticist. This syndrome comes with an insatiable appetite for food. They will eat anything and never get satisfied. They also have a degree of mental retardation. So sad, but inspirational at the same time.

NEVER wear the bear suit!

I'm pretty sure that's Prader Willie Syndrome, not the other way around! Obviously, I'm not looking this stuff up and am relying on my failing memory!

[rohrer01]

That’s correct. And many years ago the docs didn’t know squat about it, especially the rare forms.....When he was in the Army in the early 70’s they were the ones that identified it through blood work. You really couldn’t tell with him most of the time, but then he would have these anxiety attacks and freak out. I’m serious about the Tom Cruise thing, I lived that part.....It was an experience let me tell you. He would do things like buy $1000 worth of bottled water if another hurricane was headed his way down in Florida. Stuff like that. (smiley face) My attorney spends more on expensive scotch, but you get the idea.

The car accident he was in almost killed him and they spent 2 hours cutting metal away from him on that one....he was t-boned by a car at 75 right in the drivers side door. He was in the hospital for 6 months and did around 5 hard core surgeries. I would rather do a full fusion.

Yes, I have been exposed to all host of things.....I also have a good friend, a best friend, he being a Thalidomide baby with Phocomelia.
http://en.wikipedia.org/wiki/Phocomelia

When challenges in life are pushed to the limits, you find very special people....

My scoliosis was not even an issue. I just had a curved spine. Simple stuff.....

Ed

Just out of curiosity, did they let your brother stay in the military? They usually don't if they have any kind of anxiety or panic disorder.
It's also a little odd, that you say your brother appeared "normal". Usually these men are very slender build, almost feminine. But, then again, some men are naturally built that way. My dear hubby is built that way and he's not sterile (part of the genetic defect). So, I suppose it could easily go unrecognized.

Yes, when we face challenges, we do meet some unique people. There was a thalidomide woman attending my university, VERY beautiful woman! She had her scooter. She had no arms or legs, but had hands that came out of her shoulders with which she could lean forward to drive her scooter. I "assume" she was a thalidomide baby because of her condition, but never really asked her. She wasn't in any of my classes.

When I first came on here, I thought I didn't really know anyone with serious disabilities, except a friend (recently passed) who was born with spina bifida with a meningiocele and was paralyzed from the waist down. But, then as time goes on I find myself giving experiences of so many people I know who fit a certain situation. I guess I never saw the disability. I just saw the person.

I hope your brother is doing well. Never be embarrassed. It seems so often that where there is a lack of function in the brain, especially in autism, there is a HUGE excess somewhere else with superhuman intelligence. Your brother appears to be one of these. It's a curse and a gift. Just look at the gift part! Was he like that before his traumatic brain injury?

My family has had some weird, unrelated things, as well. =)

[scooter950]

'never be ashamed"

thank you Roher for your kind words, and I echo your comments to Ed - my family had many elderly eccentric relatives and they loved me very much, (when I was a young child) and yet they would not wear their teeth in public, or they would dress in skirts with sneakers & socks - and my mother always cautionned me, "never be ashamed of anyone who truly loves you" and she would assure me that my aunts and uncles and crazy cousins loved me. So I accepted them, with their idosyncracies. i just need to accept myslef. I am on antidepressants again, third time- so I hope I will get some mental clarity and shake this overwhelming sadness. blessings to all, Jamie in TX

[titaniumed]

Just out of curiosity, did they let your brother stay in the military?

No....they kicked him out.

He is 6’1” and very large....and needs to lose some weight....Its amazing how well he has managed with all he has been through....and it shows how strong his determination can be. Like I said, the doctors didn’t have a clue till he went into the army at age 18. All of a sudden it was this diagnosis....and of course there was no literature at all, nobody knew anything back then.....The East Coast doctors when we were kids usually practiced from their homes, you went in, stuck your tongue out, said Ahhh, paid him $20 and you were done......No insurance, that’s how it worked. I was dxd by an old doc that way. No x-rays, 10 seconds, “He has scoliosis”. I also slipped through the cracks.....

My phoco friend has a wooden leg, (small foot under knee) and was born with a webbed right hand in which they surgically separated his fingers. He became a Psychoanalyst for the state of NJ. Went to school for around 20 years to keep from drinking himself to death....and was the wealthiest college student due to his disability. We had a lot of fun. Even toasted champagne from his wooden leg. (smiley face) Phoco is where the foot is just under the knee, or hand at the base of the elbow. When I go back to visit, I stay with him and talk about things......deep things.

Jamie, I hope you can get past this depression quickly. I have had it come and go especially when I used to post all the comedy here on the forum years ago....Deep down inside I think I realized that things were going to work out just fine, and they did....we are not perfect, but that’s ok. I dealt with it by laughing when I could. Full fusion isn’t that bad at all.

I kind of miss that period, some of the posts were hilarious! That was in 2008 and 2009.

Ed

[rohrer01]

Ed,
You haven't lost your hilarity, completely anyway! You still come up with some really great stuff.
You do seem a bit more serious these days as compared to when I first joined the forum.
You were among the FIRST to make me feel welcome. Sorry, it weirded me out at the time! LOL
BTW, I'm not weirded out anymore. I enjoy your posts very much. The forum wouldn't be the same without you!

[Pooka1]

I kind of miss that period, some of the posts were hilarious! That was in 2008 and 2009.

Ed

That was the period when my daughters were going through their surgeries. I joined at the right time. :-)

In my opinion, because of the types of posts you made, you have always a been a spokesmodel for the forum. I especially like the Benny Hill stuff. :-)

Sharon

[titaniumed]

Rohrer, You are right, perhaps I am being a bit too serious these days....you should see me at work. I have always tried to keep it light here but this thread has me thinking....

Sharon, Since I have exhausted the Benny Hill catalogue, here is some medically related humor.

Thanks for the kind words guys...

http://www.youtube.com/watch?v=eSdNMRtvq5g

Fruit flies? That’s a good one....(smiley face)

I hate to break away from this thread, but I guess its time to take a few deep breaths.

Ed