parents_newschoolquestion

     QUESTION: My son was born with Moebius syndrome. He is 12 years old and starting grade 7 in a new school in September. The school in our town goes from kindergarten to grade 6. For grades 7 and 8, they are bussed to a nearby town. So far he has done really well and has been accepted by his
peers and doesn't really consider himself any different from anyone else.
     I am concerned about how he will be accepted in a new school with new kids and wonder if you have any suggestions about how we can make this easier on him. It has been suggested that we explain to the kids about Moebius syndrome. I am afraid that it might just draw attention to him and cause him
to be shunned. Could you please give me some suggestions about what has worked for other kids in the 12-14 age group?
     We have always been very open to the teachers and have given them all the information we have about Moebius syndrome. However, we never sat down and talked to the kids about it. Is it time to do that now? Help!

    ANSWER: Although we have never met, having just finished reading the letter and questions you sent to AboutFace about your son, I feel like I have known you for a very long time. Perhaps it's the fact that as the child "shrinkette" (psychiatrist) on the craniofacial team of the Hospital for Sick Children for the past twenty years, I have come across many parents who face the same question marks and uncertainties when their child enters a new school or new peer group: "Should I prepare them for his facial differences, even though he doesn't consider himself as really different from any kid his age?" "Is there any way I can help these new classmates see my daughter's strengths and abilities, rather than focus on the differences in her appearances first?" Perhaps it was your honesty and candour as a mom, proud of her son's independence and confidence, yet worried about the risks and disappointments which may lie ahead for him as he launches into this new venture, that touched me.
     I only wish I had such a recipe for successful integration in a new class because, believe me, as the big sister of a special brother with Down syndrome myself, it would be a my great pleasure to pass it on to as many families as I possibly could!
     There is no single formula. I'm sure you already knew I would say that. However, let me share with you some of the many wonderful "transition tips" I have learned from the terrific parents I work with through AboutFace:

1. Never underestimate the power of self-confidence: if your child has done really well and been accepted by his or her peers so far, chances are that's what he or she expects will happen next year and in years to come...and there is a lot to be said for the magic of positive expectations. You may be
old enough to remember sudden turnarounds for the worse in your own life, but sharing these past disappointments or fears will not likely help your child tomorrow. Think positively and confidently and that's the way your child will continue to perceive him or herself and react in the face of special stresses. "I can handle it, Mom!" is the message he is giving you now. "I know you can and I am proud of you" is what he needs to hear back right now...not the worst scenario you imagine at 3 am when you cannot sleep.

2. When it comes to handling differences, always stress the fact that each face and fingerprint in unique...some just happen to be more distinctive than others. Yes, some palm creases and some faces stand out in a crowd and that makes people notice them more. But many "ordinary faces" would give
anything for the opportunity to stand out in a crowd, too. How you handle that extra attention and what you make of it is entirely up to you. Barbara Streisand could afford to trade in her nose for a slimmer, more delicate remodeled version, but she didn't did she? If you can't fix it, feature it and wear your face with pride!

3. Preparing classes ahead of time, either directly or through the intermediary of a teacher, might work beautifully in Kindergarten or grades one, two or three, but after that let's face it, most kids are expected to make friends on their own merit and learn to deal with bullies and teasing on their own at recess, too. I agree with you completely that little would be gained by having a lecture about Moebius syndrome before he meets his new classmates. If anything they would probably be intimidated by the cryptic Latin word and stay clear of him...just IN CASE his condition is something they can "catch" somehow. Until such time as we can find a role model like Jim Abbott (the one-handed ball player), who has Moebius syndrome...to fire up the class with enthusiasm for the dreams he realized and the idealism he shared with all of us...just focusing on the medical jargon and what's wrong with your son's muscles and nerves is not likely to accomplish much except scare the other kids off.

4. Quite the opposite is true of teachers and principals. By all means DO share every bit of medical information you can get your hands on with them. Invite them to case conferences at the hospital and let them know how much you appreciate their mentorship and faith in your son's potential! Partnership in Education and Healthcare IS your goal and you are going to think positively and expect nothing but the best intentions from each and every one of the professionals dealing with him, just as the mission statement on their boardroom probably states. Treat people as trusted allies and they will very often rise to the challenge. Expect them to be enemies and they will prove you right, too.

5. Set an example by modeling calm and matter-of-fact reactions to unexpected and sometimes rude or gauche comments or stares of strangers. If your son is about to meet a lot of new peers and new teachers this fall, you may choose to gradually expose him to reactions of a greater number of strangers, in excursions to shopping malls, camping trips, new hobbies or extra-curricular activities or whatever. In other words, finding the right answer for the unexpected question or comment should be treated like a challenge to be met, not something to be feared or whispered about. Having never been a Girl Guide myself, I have greatest admiration for friends who can whip up a dozen useful knots, with an old bit of string...and start a fire or pitch a tent in swamps or thunderstorms or even pitch darkness. Making friends out of curious strangers, spreading enthusiasm for what you believe in and finding shelter from lightening and thunder...all these things are acquired skills too. Some of us just have more opportunities to perfect these skills, that's all. The trick is to make them focus on what you excel at, rather than what you don't. Sounds to me like your son may be a maestro at all these tricks already. Keep on doing whatever you've been doing so well so far...and please share your tips with us, too!