Social being

[Feelrich]

My daughter is most limited by her social skills. She struggles to keep friends. She has always seemed to have this barrier. When she was a little girl, she did or played what she wanted without any concern for what everyone else was doing. At around age 10 she started to realize that she should want to have friends. But she can be very unforgiving of others faults. And she is unaccepting of those faults also. She is now 13 and has casual friends, but no really close friends. Recently she left a school she had attended with the same children all of her life and she left no close friends.

Any thoughts or suggestions how she can help herself?

[equilibrium2006]

My daughter is most limited by her social skills. She struggles to keep friends. She has always seemed to have this barrier. When she was a little girl, she did or played what she wanted without any concern for what everyone else was doing. At around age 10 she started to realize that she should want to have friends. But she can be very unforgiving of others faults. And she is unaccepting of those faults also. She is now 13 and has casual friends, but no really close friends. Recently she left a school she had attended with the same children all of her life and she left no close friends.

Any thoughts or suggestions how she can help herself?

I almost want to get mad at you for the whole "How she can help herself"

It is up to YOU the PARENT, intervene and tell her to start being more social, give her encouragement. Have her join gymnastics/cheerleading/swimming or any kind of sports, and YOU can get involved in it as well. If shes afraid because she has moebius and believes she is socially awkward, then, there are barriers to overcome. She also needs to learn to accept her self before she can accept others because from what you said in that paragraph she is projecting her own faults on to other people and doesn't like them for it.

"When she was a little girl, she did or played what she wanted without any concern for what everyone else was doing." -- That is extremly unhealthy for a child especially when growing up also. When children are in that stage they are curious and want to broaden their social horizons. That could explain on why she is so shy/closed. I really don't know what to say beyond that..

[Alice13]

Wow, that's so harsh! I doubt parents can socialize for their children. They can encourage them of course and give them ideas, but that is probably all they can do.
I don't know what advice to give because it depends very much on herself, her school... Maybe you can tell her she can invite someone at home? Maybe she already does? That age is not easy because people have not grown up enough at all, appearance plays a big role, it's all about being popular, doing the right things, wearing the right clothes to be accepted and not being laughed at, etc. But there are always other people, maybe some that are a little on the margin too, that look for friends as well! She needs to try to get to know people she may not think of as potential friends at once. It doesn't matter much if it doesn't work, she'll try someone/something else.
Things do improve as time goes by. And she is as young as the others and will grow up too and hopefully accept others' faults more and more.
This is probably not very helpful... but the problem has no obvious and universal solution!

[Sean]

Sometimes talking like 2006 did will slap some common sense into a person. Believe me, I've been slapping common into people on this Moebius forum for...I think 8....9 years now. I was a lot tougher back then though. :) I used to have wars with mothers in the beginning, because they lacked common sense. They babied their Moebian children too much. If you baby your child too much, they will never, EVER succeed on their own, and that was the message I usually gave them...with a harsher tone. :) A lot of these parents cradle their children so much. It's really embarrassing to watch.

This is what you should do Feelrich. Listen to 2006, he's got a good point. :)

[equilibrium2006]

Sometimes talking like 2006 did will slap some common sense into a person. Believe me, I've been slapping common into people on this Moebius forum for...I think 8....9 years now. I was a lot tougher back then though. :) I used to have wars with mothers in the beginning, because they lacked common sense. They babied their Moebian children too much. If you baby your child too much, they will never, EVER succeed on their own, and that was the message I usually gave them...with a harsher tone. :) A lot of these parents cradle their children so much. It's really embarrassing to watch.

This is what you should do Feelrich. Listen to 2006, he's got a good point. :)

I know right? ****, when I was young my mom used to spank the hell out of me with wooden spoons all the time and was strict. She practically threw me on the soccer/baseball/basketball courts, even though i hated them at first i grew to love and my social network grew. She made sure I felt normal as possible by well.. treating me normal duh. Even though when i look back, she was a huge *****, but what can i say? Her intentions were good and I thought i grew up pretty well.

And before any pessimists come in here and bash on my mom supposedly being a perfect "mom of the year" and "we don't all have those kind of moms" she was a recovering alcoholic single mother taking care of me and my two brothers.. me being the oldest. She made a lot of sacrifices for me and my brothers..... so think on that.

[Mawrtyr05]

Is she seeing a psychologist/psychiatrist? I highly recommend finding a good one if she's amenable to it. I've actually recently realized that most of my psychological issues/struggles have very little to do with having Moebius...

[grace19]

I agree with Mawrtyr05.

[equilibrium2006]

I agree with Mawrtyr05.

I disagree with you both. Many times psychological sufferings happen under bad parenting. When you are going through puberty, well just to lay it bluntly, you just want to get laid. Well obvously if you have some facial disfugurement even before that age some kids won't see that as normal and will shun you. Thats why there needs to be parents that understand this **** and need to be behind their kids backs, Because once i know whomever goes to a psychiatrist who has moebius syndrome the first thing i know the "moebian" will tell the shrink is "yeah, noone accepted me because i was different", who knows maybe that will happen at a very young age.

Then i can imagine a years later Bi-Polar will occur due to bad management and then ofcourse it will be "non-mobian related" because all sorts of people have bi-polar.

Psychological help isnt needed for the topic creators daughters help. GOOD PARENTING is. When it comes time her daughter comes home to screaming fits of anger/depression to the point of getting sick then yes then i would recommend her going to a psychiatrist.

[Sean]

Sometimes parents are just too dang lazy to fully parent their child, so they send their kids to a head doctor.

And yes, bad parenting can result in a badly or mentally ill behaved child.

Your child is going to have some bad events happen in their life. Let those bad events happen. It'll make her stronger later on. I had some down moments in my life, those moments only made me stronger inside.

[grace19]

Parents aren't perfect just like everyone else and sometimes they need help and guidance on parenting. As far as I know, you don't get a "How to" manual when you become a parent. Lol I think a counselor can help both the Parent and Child. But you have to want help, first.

Oh and I wanted to add that it seems to take longer for people to develop the ability to accept others faults. To see the person and not just their weaknesses or only their Strengths may take time. At least that's how it was for me.

[Feelrich]

It is amazing to me that someone can determine in a one paragraph question for help, can diagnose a whole family and the problems they have. And then bluntly state all the faults they possess and how that person failed someone else.

All from one paragraph asking for help.

Do we think that is a helpful technique for this child? Are do you care that your answers are hepful or not? What is your goal for attacking me? Is this just your way of starting trouble?

Sean, do you think your 8 or 9 years of attacking others has been helpful to the children here? Do you enjoy this method because your angry with all parents because none of us are perfect?

Equillibrium 2006. I am going to guess that you are young in age. Most adults have a more caring way of commminucating with others. Most adults care more about helping others rather than blaming them.

I also communciate on the google Moebius board, and I have never seen anyone attack anyone on that board.

If you don't want to help someone who is asking for help, then don't help, but why cause hurt? We ask for help because we care about our children.

[Sean]

First off....I'm in no way unkind. TELNET, do you know what TELNET is? TELNET was mostly for college students to access their e-mail via a non-graphical/text only internet server. TELNET also was used to access bulletin board systems. Bulletin Board Systems were programs people call into to write messages, to chat, etc. I started using TELNET to access BBS locations across the country (U.S.), in 1994. I helped many out. I didn't attack them, I helped them. These problems were nothing like math problems..I'm talking about spousal abuse, parental abuse, SUICIDALS, drugs, relationships and rape victims. There were a lot of people out there with problems. I tried my best, and did a good job too.

[Feelrich]

Is she seeing a psychologist/psychiatrist? I highly recommend finding a good one if she's amenable to it. I've actually recently realized that most of my psychological issues/struggles have very little to do with having Moebius...

Thank you Marty. Yes we have tried that. She went only once and refused to do so again. She would not look at the counselor. Her father and I went without her to learn how we could help her. But some of you are right, I can't be in every social situation. She goes to school without me. So she is on her own most of these situations.

I will continue to try to seek out others who are willing to help our family.

Sean, thank you for helping so many people.

[equilibrium2006]

It is amazing to me that someone can determine in a one paragraph question for help, can diagnose a whole family and the problems they have. And then bluntly state all the faults they possess and how that person failed someone else.

All from one paragraph asking for help.

Do we think that is a helpful technique for this child? Are do you care that your answers are hepful or not? What is your goal for attacking me? Is this just your way of starting trouble?

Sean, do you think your 8 or 9 years of attacking others has been helpful to the children here? Do you enjoy this method because your angry with all parents because none of us are perfect?

Equillibrium 2006. I am going to guess that you are young in age. Most adults have a more caring way of commminucating with others. Most adults care more about helping others rather than blaming them.

I also communciate on the google Moebius board, and I have never seen anyone attack anyone on that board.

If you don't want to help someone who is asking for help, then don't help, but why cause hurt? We ask for help because we care about our children.


It is what it is. I wasn't attacking/blaming anyone. Nor was i diagnosing a families problems, what do I look like.. a doctor? All the words that came out of my mouth (keyboard) were my own opinions. I talk to adults as adults.. so do not condescend me. You are the one asking for help on how to parent online. If you don't like what advice i have then skip over.

[mikes mom]

Sometimes on this board, other peoples "advice" definitely comes across in a critical manner. Using wording like "good parenting is needed" or parents are "too dang lazy" are not helpful. If a parent is posting here, it shows that the are not lazy. They are not ignoring the child's problem, as a lazy or bad parent would do.

When those type of responses come in to my posts, I just ignore them. Take the helpful responses and ignore the rest. I don't think anyone is trying to do harm, its just some people do not really know how to respect the opinions of others, and in turn they respond in a way that makes it seem that their perspective is the only possible correct perspective.

Your problem is a tough one Feelrich. I think the best you can do is to keep putting your daughter in social situations. You said that she is noticing that she should have some friends, but it might be that she doesn't know how to make friends. Maybe some roll playing would help. My bet is that there are also books that deal with socialization. Kind of a "how to" manual in story form. Look for situations where she will have to interact with others. If she has no choice, she might find it easier.

Hope this is helpful!!!!

[babyboomer]

In reading this strand from start to finish, I - an outsider - saw (1) a question and then (2) various forms of ... (IMHO) attacks.

Feelrich wrote about her child's behavior - am guessing as realistically as she could. But one posting on an internet forum does not equate with "knowing" the child or the parent .... so (again, IMHO) people - young and old - need to take that (asking for ideas, etc.) simply at face value.

I imagine it's a helluva lot easier to knock someone down, deride them, find fault, etc., than offer genuinely useful assistance. Obama slams McCain. McCain slams Romney. Paul slams Huckabee. Clinton slams Obama. WHY? to become the Top Dog.

So - if you're *****'ed that your mother did this or your father did that, either get over it or find good mental health support. There's nothing wrong with good, knowledgeable guidance. People who deride mental health services are either ignorant of their purpose and strength, or of the opinion that only 'their' opinion matters.

This is allegedly a 'community'.... and in one, people learn to get along. Manners (like not rubbing the snot from your nose with your finger, or not farting with effort) - even in a virtual world - are appreciated. If you feel a need for a tirade of sorts, become a preacher, get a pulpit and an organist and vent. The vent-hearers will want to hear it. Those on the street could care less.

Now that I have used my fickle finger of fate and a wet noodle to 'attack' all you 'young'uns' (hey, anyone under 60 is juvenile to me) ... some thoughts ... Feelrich - your child probably already has had all the love and care any kid could get. YOU probably have more self-doubt about you than others do of you! By your being here, and sharing your story, you're opening up a hurt of yours - hoping to find some answers. That is to be commended!

Do you think your child feels your love? (I would think so.) Does you child talk about her future ... what she wants to do in, say, 10 years? Who knows ... as that very hungry caterpillar spent time in his cocoon, waiting for the Big Debut as a beautiful butterfly ... your child will ultimately pick up what she can, and use it, feeling loved, and move on. One thought may be to suggest a pen-pal thing, or 'round robin' where kids with Moebius in a group share stuff and send it along to the next person who adds his or her stuff, etc. My aunt has done this for 56 years! Maybe some grown-ups can help the kids get started - giving the kids some themes or ideas like ... what I like about school, what is hard about school, what is important to me, questions about Moebius ... sort of like a newsletter by and for the kids - maybe even a "Dear Abby" type of thing where kids can write in a question, and then somebody who's in college or older ... or old .... or ancient, even... can write some suggestions.

I think it's hard to walk in both sets of shoes - those of the child with Moebius, and those of his/her parent. So watch out .... those shoes you've never worn may give your feet blisters:)

*dinosaur

[Feelrich]

One thought may be to suggest a pen-pal thing, or 'round robin' where kids with Moebius in a group share stuff and send it along to the next person who adds his or her stuff, etc. My aunt has done this for 56 years! Maybe some grown-ups can help the kids get started - giving the kids some themes or ideas like ... what I like about school, what is hard about school, what is important to me, questions about Moebius ... sort of like a newsletter by and for the kids - maybe even a "Dear Abby" type of thing where kids can write in a question, and then somebody who's in college or older ... or old .... or ancient, even... can write some suggestions.


*dinosaur


That is a great idea. Thank you for your insite, your reassurace and your genuine desire to help. I wish more people just wanted to help each other. We would all come here more often, and we would have more desire to post.

[babyboomer]

Maybe, Feelrich and all the others "out there" who read these posts but don't comment (just look at number of posts to a thread, vs. number of views ... maybe 400 views for 4 responses) ...

Maybe it's time for the virtual community to identify some fair, equitable "ground rules" for communicating - with the prime one being NO PUT-DOWNS.

When civilized people who only know one another slightly (as in attending the same workshop) get together to discuss a common concern, TYPICALLY they do so with 'civility'... before speaking, they attempt to communicate in a way that (1) gets their point across, while (2) NOT slamming someone else - ESPECIALLY someone who hasn't attacked them.

While my choice of a social gathering may be wine and cheese and lots of laughter with good friends, someone else's idea of social gathering may be playing pool in a smoky pool hall, or watching something on TV with good eats, or...? Some people may have grown up with put-downs so they don't consider them inappropriate, while others are very conscious of what they say, and how they say it. And, each one has the right to be whoever they are with their own friends and in their own place.

But this is a public place, like a library or city hall. So just imagine that you put on your better clothes - not 'going to a wedding' apparel, nor 'cleaning the garage' rags ... but decent clothes - no offensive words on a t-shirt (regardless whether you think they are or aren't), no revealing clothes... The kind of clothes you are expected to wear when you are called to jury duty.

Nobody, regardless of how long they have been here, there or anywhere else ... nobody has any more right than anyone else to 'be' here. Nobody can claim the Braintalk communities as theirs since they've posted 435,223 times.

And now, with my gavel, I have ended my judicial speech and the deputies are taking me away .....
*grimace

[Sean]

Attacking is one thing, giving opinions is quite another. I'm sure if a person on here really attacked someone, they'd hear from the moderator of this group.
I haven't heard from a moderator since I posted the March Of Dimes thing. Before that, I havent heard from one in ages. They know what's inappropriate or not. I'm sure if they see something distasteful, you'll see it edited.

The reason why kids don't come on here, the real reason, their parents don't let them. Why? Because they like to control their kids' minds. Don't let a 9 year-old in here, have a special forum for the little ones. But let the teens on here. I'm sure they've seen worse in PG-13 movies than what's in here. In all honesty, parents don't want their teens to have the mindset of what Equilibrium6000 & I have. We have common sense, we are very honest, we don't beat around the bush, and we give you a straight answer without hiding behind a bush. This is, I think, good. It gives people courage to just come out & say what's on their mind....within' reason. Teens have a lot on their mind...more than any other group in the ****-saphien species.

Before I became a parent myself, around 1999, I said that these parents of Moebians protect & baby their Moebians too much. Now that I actually have a son, without a disorder in him, I think back to those words and I still won't take them back. Because they do. Some moms do a great job in my book. They try to get their child to learn to be independent. My parents flat out babied & spoiled me, so I know what I'm talking about, I've been there. And it was soooooooooooooo hard to become independent. So thats why, from time to time, I'm a spokesman for the kids, saying, DO NOT BABY YOUR KIDS. Some do baby their kids. Not all parents baby their kids, but some do.

[mikes mom]

I'm not sure which parents gave you the information that they don't allow their teens to come to this site. Most of the parents I talk to are in the same boat as me. I am the parent of a teen. Mike will be eighteen in September. I have asked him multiple times if he wished to participate in this community. He has declined. To him, Moebius is not a big deal in his life. On a 1 to 10 scale, he says its a "2". More important to Mike are which colleges he wants to apply to, what movies are coming out, and what his friends are doing on Friday nite. Kind of weird, since I tend to think about Moebius almost daily !!!! If Mike wanted to partcipate in this forum, he would be more than welcome.

[Feelrich]

Agree with Mikes Mom, I always offer my teen to participate. She says "no thanks."

I did take the advise of connecting her directly through email with others in her age group. She emailed a 15 year old girl with Moebius to talk to just yesterday and is looking forward to her response. I hope we can grow that number of teens that want a more direct connection than a message board can give them. Their conversations can be private, and they will be less a target of others abuse.

Thanks for helful advise Babyboomer.

[babyboomer]

Feelrich, I'm glad that you found someone your child's age to connect with - I think that a private, 2-way connection is great - I'd probably want to know who the other child is (some 15 year olds have beards, bald heads and other things on their mind). Personally, I don't think a forum for teens with Moebius would be good, primarily because you lose 'control' over who your child is connecting with. It's one thing for us adults to squabble over this or that - I think teens would find their 1 on 1 emails, chats, etc., more meaningful than anonymous posting with a username.

Maybe there's a way you can be a 'matchmaker' of sorts - making sure the other person with Moebius is indeed a teen with Moebius whose family approves of the connection... maybe another aspect could be a more public newsletter... Heck, high schools have newspapers - and the students work with an advisor to do it (OK - back in "my day") ... maybe the teens can develop their own newsletter - written BY teens, FOR teens. And, if they want input from older folks (20, 21 .... 114) they can ask for it.

BTW, the oldest person in the world was this 115 year old lady who was sharp as a tack - just as sharp as anyone in their early 60's ... and she was asked "To what do you attribute your longevity?" (Japanese - fish, Mediterraneans - olive oil, etc.) Her answer? - "Just keep breathing.":D

[Feelrich]

Actually Babyboomer, I have spoken with the mother of the teen on the phone last week. We have not met in person, but are going to share a hotel room at the conference next month. So the girls will really get to know each other and be able to 'hang' for a few days.

I think I may try to grow the number of young teens that want to communicate while at the conference and get the contact info so they can start a group connection.

I think this will be of great help to my teen to have a group of her peers to socialize with.

*forgetmenot

[Meikster]

What conference is it you''re talking about?

[equilibrium2006]

What conference is it you''re talking about?

ayo, it is July 11th-13th at Parsippany, NJ muh nigga. Should be good times.. it think.

[Meikster]

Unfortunately I live in the UK so I can't go. And don't use the N- word.

[mikes mom]

It might be slang, but it is inappropriate.

[Sean]

Be a respectable person on here man, don't use that N word. I think that kinda talk has to be the most silliest forms of verbal communication ever.

You can be yourself, just don't use that N word. LOL, u know, I'm quite shocked that hasnt gotten edited by a moderator yet. I think they jot down names...like yours truly for instance, and look at every single message I write.
But you havent done anything bad, so they don't watch you that closely.

But still, that N word, to me, is worse than the F word. It just has that evil sound to it (the N word)...it has very dark history behind it. I get shivers just hearing it...but the F word is not half as bad...actually, back in the 15th century, the F word got invented...the definition...was to tap something. That was it...To "F" on a shoulder...to tap. Now, it has a very very very heavy load on the word's shoulders. :)

[xxx Kac]

well thinking back to when i was 13, i remembered that I was in the 'cool' group and yet i still felt left out and uncomfortable....I think/pretty sure it's just a part of growing up and that stage where you arn't a child anymore, (well you are a teenager) and just coming to terms with how you should feel, how people want you to feel, what you want to do ect....it shouldn't be that hard yet, 15/16 years of age is the hardest to have meobius i would say. Going to a conference would help I would say, but if she is refusing your help, then why would this make her feel any better? i mean SURE, for goodness sake, seeing and understanding that their ARE people out there like here, with the same issues would be good, but wouldn't it make her sadder? atcually trying to struggle into the 'normal' selection of people, and then being placed into a group where she knows she is like them. I mean maybe she would have no problem with going to this, it's a great idea and all, but for me, personally, it makes me feel angry and upset and frustrated....but hey that's just me, I guess the only thing you can do, is just to let you know that things are obvesly going to be tough for her, but that you are always there for her even just to give her a hug when shes feeling sad....I mean, my parents don't give a **** about me or about my problem, and that's the whole reason I'm so much harsher on myself, but if they did over protect me, I would hate them so much more if you understand?.

Oh and another thing at the age of 13 (17-18 now) that was the first time I looked in the mirror and hated what I sore and couldn't do, and that's when i first 'hurt' myself....
(not saying she would do that - but just saying it's when you basically can't escape it)

[equilibrium2006]

LMAO, whoops. I just got done playin softball and me and some peoples drank before and after so i was kinda buzzed when i wrote that.. my bad.

[Feelrich]

Going to a conference would help I would say, but if she is refusing your help, then why would this make her feel any better? i mean SURE, for goodness sake, seeing and understanding that their ARE people out there like here, with the same issues would be good, but wouldn't it make her sadder? atcually trying to struggle into the 'normal' selection of people, and then being placed into a group where she knows she is like them. I mean maybe she would have no problem with going to this, it's a great idea and all, but for me, personally, it makes me feel angry and upset and frustrated

She has been to 4 conferences before and always enjoys and wants to attend. She gets angry when we can't afford to attend. She has friends she reconnects with each time. It is the one place she can be with others who deal with the same things she deals with. They don't even have to discuss these things, it just gives her support in knowing she is not alone.

I really can't afford to go, but are going anyway for her.

She is enjoying talking with the teen she is getting to know via email. Right now they just talk about anything, getting to know who each other is. They have not discussed any Moebius related stuff.

[xxx Kac]

oh okay then, that's good.