A NOTE ON PARENTING AND MOEBIUS SYNDROME

So I've been reading this book lately, by Dr. Laura Markham--all about "peaceful parenting", as she calls it, and how to stop yelling at your kids and start connecting with them.  It's a great book for all parents.  I encourage all to read it.  But I also think there's a connection to Moebius Syndrome, and you Moebius moms and dads will be interested in it.  Let me lay it out.

What Markham focuses on is that, for children, one of the important things to do is to connect with them, and especially to empathize with them.  The emphasis should not be on tough discipline, "consequences" and time outs and tough, negative actions in response to "bad choices", etc etc.  There must be limits, yes, and boundaries set; but it's important to do it in a positive, loving, empathic way.  And one of the most important ways to foster all this is to acknowledge and sympathize with your child's feelings.  If your very young child gets angry and throws a tantrum, try not to get mad and lose control.  Same goes if your somewhat older child gets angry and doesn't behave as he or she should.  Don't get mad and suggest your child should not express his anger; this can effectively get your child to try to bury those feelings and deny them.  That won't help.  The anger will only come out later.  Instead, realize that your child's tantrum tells you that somehow your child feels that he or she has lost her connection with you, that it needs to be re-established somehow.  Acknowledge your child's anger--"yes, I realize you're mad; you really wanted to play longer, didn't you?  I know.  But it's bedtime now."

I probably don't explain it as well as Ms. Markham can.  You should read her book yourself.  But now how is this related to Moebius?  Simple.  What can be the most frustrating thing to deal with for a parent of a Moebius child?  I bet you it might be this:  your child's shyness.  It's hard for your child in social situations.  Maybe he or she is reluctant to go to school functions.  It's difficult for him to get out there and make friends.  It's hard for her to go to another child's birthday party.  And so forth.  It's hard for you parents, I know.  You weren't shy like that when you were young.  It's not a big deal for you to meet other people.  Why is it so danged hard for your child?  Now, here's where Dr. Markham comes in.  Think of how much better it would be, when it comes to your relationship with your Moebius child, if you showed empathy.  Remember:  when you were young, you weren't seen as looking "different."  Especially:  you were never stared at as a Moebius child is.  So remember:  why not acknowledge your child's feelings?  "I know it's hard to be stared at.  I know it's not easy to be seen as different.  I know there are children who tease you.  And it's not right."

You should still try to get your child to go and do things.  You shouldn't just allow them to be hermits.  But remember--it's hard sometimes.  A little empathy from you can go a long way...

"To live a creative life, we must lose our fear of being wrong."--Joseph Chilton Pearce