FOR MOEBIUS MOMS AND DADS: SCHOOL IS STARTING, SO...

...so I wanted to return to one of my favorite themes.  I've talked about it before on this blog.  But now, with fall approaching and school starting pretty much everywhere, maybe it's a good time to return to it again.  Namely:  yes, school is starting.  And maybe your child with Moebius Syndrome is shy...very shy, perhaps.  You worry about this.  So what to do, what to do?  Here's one piece of free advice; and let's break it down, piece by piece:

1] Yes, you worry about your child.  He or she has Moebius.  Maybe he's shy around other kids.  She doesn't make friends easily.

2] I think then that one of the important things for Moebius parents to think about is:  look, you need not make a big deal out of it.  This is really not unexpected, right?

3] Because look, you KNOW to a degree, at least, why your child is shy.  He or she looks different, sounds different.  Maybe at times other kids stare at him.  That can be hard to deal with.  It's no fun.  It can make you shy.

4] And always remember, parents--if you don't have Moebius, then you cannot know what it's like to deal with what your child is dealing with.  You can't know what it's like to be "different" in that way, to have other people stare at you, at times glare at you and show their discomfort, at your difference.  Only someone who's been there can truly know.

5] So therefore:  look, don't wonder _why_ your child is shy.  Don't ask him or her why they're shy.  Don't act like it's some mystery.  Don't be mystified by it.  Because you know where the shyness comes from, at least where a good deal of it originates from--it's from the fact he or she has Moebius Syndrome.

6] And so:  DON'T GET FRUSTRATED.  No, of course you don't want your child to be shy, or to be a hermit.  Yes, you want to encourage him or her to get out, and make friends.  But it may take time.  Be sure and show understanding, love, and patience.  It's hard to look different.  It's hard when others stare.  Sometimes it's no fun to go through.  Sometimes kids (and adults, too!) need a break from that.  Yes, for you, when you were younger, it wasn't hard for you to meet new people.  It wasn't so difficult for you to make new friends.  For your child with Moebius it's much harder.  Don't be angered by it.  Don't be too frustrated by it.

Just try to understand.  And again, to show the love, understanding, and patience that your child needs.