MOEBIUS1.ORG

MOEBIUS SYNDROME CONFERENCE 2002           ST. CHARLES, IL.

by  KEVIN SMANT

Hi, everyone. Some of you I have already met, at the recent Moebius Syndrome conference. Some of you were also at the conference, but I didn't have a chance to meet you yet---I did however get your e-mail address from the conference journal/memory book. I got other e-mail addresses from the Moebius1.org web site---an excellent site, my congratulations to the webmaster. And for still others of you, I had your e-mail address forwarded on to me by others.

I hope none of you minds my e-mailing you. But we all have something in common: either we have Moebius Syndrome ourselves, or we are very close to someone who does. And so we all have an interest in supporting each other.

Myself, I have Moebius Syndrome. I am 40 years old. I am a professor of both history and education. I teach at Indiana University South Bend. I used to be very career-oriented. To a degree I still am. But recently I attended the Moebius Syndrome conference, held in St. Charles, Illinois. It was the first such conference I had attended. People were very complimentary to me concerning the fact that, despite my Moebiius, I had been able to carve out a career for myself.

But the truth was, I was very humbled in the presence of everyone at that conference. Many there had to overcome far greater obstacles than I. Yet the spirit, the life, and the love I saw there---between fellow Moebius adults and children, between the parents and relatives of those with Moebius and their offspring, between everybody---will never be forgotten.

I had not been involved in Moebius Syndrome support network activities before this. But I decided that needs to change.

And so one of the things we can do is to talk to each other, and share ideas, opinions, viewpoints as much as possible. I thought that, perhaps by sending out this massmail (one thing I'm good at is sending out e-mails!! :+) we could begin an occasional conversation and sharing, involving everyone---those who have Moebius, the parents of children who have it, grandparents of children who have it---everyone.

It just so happened that I read something recently that I thought applied equally both to all you parents out there, and those of us who have Moebius. It's from a book called HOW TO THINK LIKE LEONARDO DA VINCI, by Michael Gelb. To a degree it's for all us teacher types like myself; but it also contained this---about "curiosity"---pay attention, parents!: (p. 51)

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How do you raise a child who thinks for himself, learns from mistakes, and perserveres in the face of adversity?

As with most aspects of parenting, the answers aren't easy. But one key is to nurture your child's confidence. The word confidence comes from the roots fidere, "to trust", and con, "with." Confidence, trust in oneself and one's abilities, is the secret of success, and the experience of success is a key to building one's confidence. Build your children's confidence by guiding them to success in learning. Break tasks down into single components so kids get a series of small successes rather than a few big failures.

Nothing builds a child's self-confidence like unconditional love. Let your children know that _you love them for who they are, rather than for what they do_. Complement unconditional love with enthusiastic encouragement. Shower your children with phrases like "You can do anything you set your mind to", "I believe in you", and "I know you can do it."

Treat mistakes as learning opportunities. When your children do fail, give them gentle, _accurate_ feedback and enthusiastic encouragement. One of the problems with some "self esteem" oriented education is that it confuses unconditional love and encouragement with _inaccurate_ feedback. Telling a child that his performance is good or right when it is not undercuts the development of genuine self esteem. Accurate feedback grounds your child in reality and communicates your respect for his ability to learn.

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I thought that was an excellent quote to keep in mind. I know many of you parents out there want to promote your Moebius' child's self-confidence; above is a good way to start. (my personal experience confirms it) And I know some of us adults with Moebius still sometimes struggle with shyness and confidence issues; we should remember the above too. Remember what you _already_ have accomplished; be aware of your own abilities---don't short-change yourself. Know that your friends and family care about you. As do all the folks included in this e-mail, I venture to say...

More later. The recent Moebius Syndrome conference was a great thing. Let's keep the support going!

Kevin Smant
History/Education
Indiana University South Bend
ksmant@iusb.edu