So today is part 2 of my little series on, I guess you could say, a constant topic with this community: living with Moebius Syndrome. Again, what I'm writing about today was inspired by some questions asked by my friends in the Moebius community who are on Facebook. They ask lots of good questions.
Today let me address Moebius moms and dads. So suppose you are the parent of a Moebius child. Maybe he or she is a teenager or thereabouts; or maybe a little younger. But what many parents worry about is the same: my child is a little shy. He or she doesn't have many friends. Maybe he's always been this way. Maybe it's become worse because she's been the victim of teasing and bullying. What will happen when my child goes to the big middle school/high school/college down the road? How will my child be able to cope? How can I make him or her less shy?
These are hard questions. Maybe the first and most important thing to realize is that there are no easy answers or magic solutions. Look, lots of people who don't have ANYTHING physically "different" about them are shy, too. Who can explain that? Everyone is different. And it's difficult to change who a person fundamentally "is." But in any case, here's the suggestions I would make about this:
1] Always be encouraging. Don't make this a huge negative thing. Drumming into your child that he or she has a "problem" isn't going to help anything. Instead, remind your child of his or her talents and qualities; encourage him to do things and to go out and meet people; if and when it happens, again, be encouraging, but don't make a huge deal about it and act like a miracle has occurred. Your child has Moebius Syndrome; he or she isn't stupid. She can see how you act and can guess why; she doesn't want to feel manipulated.
2] But beware of forcing your child into things. At bottom, your child is going to have to make his or her own way in the world. He has to figure things out for himself. Sometimes that has to happen on his schedule, when he's ready. Forcing your child into this or that activity, forcing her to join this or that group, just might not have the right outcome. Obviously it could lead to resentment and anger, or even worse behaviors. There has to be a balancing act. Obviously you don't your child to live a shy, hermit-like existence. But you can't handcuff her and force her out of the house, either. I lean towards: just be encouraging; realize it may be a slow process; and having it happen in baby steps is okay. What if your child got out of the house and just went to a movie, or to a store, any store, by him or herself? That's a good first step. It's acting independently; a good way to begin.
3] Don't get frustrated. This can be one of the hardest parts of this for parents. After all, yes, you're the parent of a Moebius child. But you don't have Moebius yourself. You didn't have it when you were younger. So for you, this shyness thing can be hard to understand. I mean, when you were young, you weren't so shy. You were able to go up and meet people. You were able to go out and do things. People aren't bad. So why does your child have such a hard time getting out, meeting people????
But remember: your child has Moebius. He looks different. You don't. Your child may very well have had to endure stares; teasing and nasty comments; odd looks and comments and reactions from strangers; strangers even assuming that you have some form of mental retardation (even though you've never said a word to them.). Those are not the easiest things to go through; and they don't exactly make you excited to go out and meet the latest person who...might just give you odd looks, etc.
That doesn't mean it's okay to let your child be home alone forever. But just remember, it's not the easiest thing in the world for your youngster to go out there and face the world, and thus if the process is a slow one, that's okay. And normal, really.
4] Above all, our Moebius children just need to find their voice. And that just means: help your child find his or her identity. What do they really like? What are they passionate about? What then might they want to do with their lives? What are they really good at? What do they want? Encourage them in their hobbies. Encourage them as they talk about possible careers. Just encourage them to find out who they are, and where they want to go. Again, your encouragement in that search is crucial. But really this is the key. Once your child begins to discover his passion, his "voice", then some of these problems begin to decline. When you find a voice--a purpose, maybe?--you're going to move about in life with more confidence. You're going to know more about where you're going. You become more mature. Maybe some of that shyness will go away (though it may never completely go away).
Again, this can take time. It doesn't happen right away. But it will happen. And you can help it along. Many of the people I know with Moebius Syndrome are some of the most accomplished people around. Even though we can't smile. But our smiles come from our hearts. So, ultimately, will come our voices...
Kevin,
ReplyDeleteWELL SAID! Thanks!