ADVICE FOR MOEBIUS PARENTS
So this summer, at our Moebius Syndrome conference in Philadelphia, one of the things I'm going to do is to facilitate a conference session titled "Just for Dads."  It's a time set aside for the fathers of children with Moebius Syndrome, to allow them to share their experiences, to figure out solutions to the challenges they're facing, and just to learn from each other.

It's a bit of a different experience for me.  I am after all a dad, too.  I'm a dad with Moebius Syndrome.  But at the same time, I'm not a dad who has children with Moebius Syndrome; both of my kids, Ethan, who is 4, and Sophie, who is not yet a month old, do NOT have Moebius.  (Which is an interesting thing, given that both I and my wife, Lisa, DO have Moebius).

However, I think one thing I can bring to this session is simple; I do have Moebius, and I was a therefore a child with Moebius once, and I remember those days.

And I think the best piece of advice I can give to the dads whose sons and/or daughters have Moebius is just this:  try not to get too frustrated with your child.

Well, now, that sounds easy, doesn't it?  After all, we all love our kids.  We know we shouldn't get too frustrated with them.  We know we need to be encouraging.  Frustration isn't good.  So how hard can it be?  Hey, we're all committed parents here.

But--I know it isn't always that easy.  Children with Moebius can't always see everything that you see.  (Their eyesight isn't as good; in my case, and I'm not alone, I can see out of both eyes, but I can only use one eye at a time.)  They can't always do everything that you could do when you were a child; their physical skills aren't the same as yours, their balance maybe isn't as good...and, especially, it's very easy for a Moebius child to be shy, to be quiet, to be socially awkward, to be more reluctant than you'd like them to be to mix with other kids, to go to parties and be involved in social situations, etc.

And that can be hard for parents.  It can be frustrating.  Parents know their Moebius child can't be a hermit; they can't be so shy they stay home all the time.  Many parents weren't all that shy when they were kids.   But always remember, parents--when you were young, you didn't have Moebius.   You've never gone through what Moebius kids have to go through; so it can be hard for you to understand the occasional shyness, the desire to stay home sometimes, to not want to go out and throw yourself out there. 

But I know the tendency for the parents of Moebius children is to say:  why are you so shy?  What are you so afraid of?  There's no reason to be shy.  There's nothing to be afraid of.  As a non-Moebius person, that's the way it appears to you now.  That's the world you know.

And I'm not saying that you should allow your child to be a hermit.  You DO want your child to get out there.  But what I am saying is:  do this in an encouraging way.  Remember that your child does have Moebius. It can be hard.  It's hard for you to understand it as a parent; you haven't been through it.  But it can be difficult.  It's hard to be stared at.  It's hard to be laughed at, whispered about.  It's hard to always know:  I'm different.  Others think I'm different.  And not always to understand why you were born that way.  But that's sometimes what your child has to go through.  So be understanding of that.  Don't act like you don't understand why your child is shy.  Fact is, you _do_ know why he or she is shy.  Don't let your child hide from the world. 

But at the same time, what I'm really driving at is this:  don't get angry at his or her shyness.  Don't get overly frustrated by it.  Because down deep, you know why it's there.

Just be positive; be encouraging; allow your child the space to develop his or her own friends, and find his or her own voice.  It will happen, and it will happen even sooner if you nurture it and allow it to grow.

“Ability is what you are capable of doing. Motivation determines what you do. Attitude determines how well you do it. ”-- football coach Louis "Lou" Holtz (born 1937)