dealing with stares and questions

[sdemick@saratoga schools.]

I recently adopted a Four year old from Russia with minimal repair done to a bilateral cleft lip and palate. How do others handle the stares and questions asked about her condition. I am happy to answer a polite inquiry but have found some people are less than polite. Also, I am surprised to find that some people ask if she is retarded just because she looks different. When we go out some people just stare! I can't believe how rude they are. I generally stare back. You know the evil eye! My other daughter also has a cleft, but more repair has been done and it is less noticable. I would like some advice on how to handle the public in general. I love my kids and it hurts me to see them treated this way.

[Melanie - mom of Savanna]

Hi! I am the mother of a 10-month-old daughter who was born with Pierre' Robin Syndrome (PRS) and a soft cleft palate. Although it did not affect her lip, the PRS caused breathing difficulties and she received a tracheostomy tube when she was 3 wks. Boy, did I get my share of idiotic questions!! People asked us if she ate through it! Can you imagine trying to put food in a tiny hole barely big enough to breath through? Also, when you have a trach, nasal drainage comes out through it so many people told me I shouldnt have her out when she was so sick. I just replied that they shouldnt comment when they dont know what they're talking about. She also had a g-tube for feeding in her stomach. That raised tons of questions. People acted like instead of feeding her we were pulling her intestines out. There were many a times I threatened to have a t-shirt made for the baby that said "if I want you to know i'll tell you".


The best, and actually only, advice I can give is to try to remember that people are curious and uneducated. My 7 year old was yelled at by a teenager at one of our suregons ofc once for staring. She did not mean any harm, she simply did not know why he looked the way he did. It really hurt her feelings. Our children are beautiful! The little imperfections just make them extra special.


God Bless!!


Melanie

[zacsmom98@hotmail.com]

I think this has been one of the single most difficult issues for me since the birth of my son, Zac, (bilateral incomplete cleft lip and palate). His condition was a surprise to us at birth, so I was unprepared emotionally. I was actually afraid to go out with him at first, fearing how I would handle it if someone was unkind. I have to say, those unkind remarks have been few (heck, most of them came from family members early on). But as far as staring and uneducated questions...I just had to finally realize that these people didn't know...anymore than I did before I had Zac...I don't tolerate ANY mean comments...but I do kindly take the opportunity to educate those who seem willing to learn. Staring...well I just stare back...and if they're uncomfortable they stop...if they want to ask questions...I answer.
Best of luck to you with this difficult issue!
Angela, mom to Zac, 20 mos, bclp.

[Tami]

My name is Tami and I am a 27 year old mother of 2 girls. I was born with a bilaterial harelip and double cleft palate. I have undergone numerous surgeries to have this repaired at Bostons Childrens Hospital. I felt the need to respond because I can definately relate to the stares and comments. This has been a learning process for me. My parents taught me that I was no different than anyone else just because of how I looked. I can tell you that my motto for life is "What does not kill you, makes you stronger." My Mother always said when I was feeling bad for myself to take a walk through Boston Childrens and you will see handfuls of children that have it worse than you. To anyone else this may sound cold but it really brought home for me the fact that I was truly not alone and that there were many children who suffered far greater injustices than myself. She never belittled my pain but would never let me wallow in it. I thank her for that.When people first started to stare I had older sisters who would threaten to beat them up for me. I gradually learned that snide comments back did not help. I learned that people who deserve your time will simply ask questions to further educate themselves. I learned that the people who made mean comments or just stared were simply not worth my time. I am very happy with the way my repair came out. I can tell you that it is hardly noticable to many. Just the other day though at the ripe age of 27 fully repaired, I went to buy my daughter a pizza at the mall and the girl behind the counter with 3 eye rings could not stop staring. It bothered me at first, I was tempted to say, what the heck are you staring at, but I think just smiling at her made her feel more uncomfortable than I ever could have felt. I wish you all the best of luck with this. I will say that no matter how old, how well reapired, people will stare and it is up to us as parents to teach our children how to be strong in the face of adversity. Thank You If anyone would like to e mail with me feel free at Eve-616@excite.com

[Brian]

Hi-I'm 39 and have a bilateral cleft lip and palate. Having a cleft lip and palate is a lot more complicated than people staring at you. I've spent the last couple of weeks reading some of these boards and I'm amazed how little people are aware of the psychological effects of a facial deformity. It is also interesting to note that people barely mention that with a cleft lip and palate your nasal passages are restricted so you can't breath as well. This makes it impossible to run or do sports well that involve a lot of running. I've wondered weather modern medicine can fix this?
You need to realize that a person with a facial deformity is going to experience things that you can't relate to or won't believe is the case. Children with clefts are told to act confident and pretent there is no problem. The reality is that they are treated very differently their entire lives. I went to the very best schools in the country and never got a single job offer coming out of business school. Merril Lynch wouldn't even hire me as a retail stock broker. They told me I had the highest score they had seen in years on some test they gave me. My relatives all stood silent although some could have easily been helpful. I ended up selling penny stocks for a bunch of firms run by organized crime types. I had to keep switching firms as they kept going out of business. Nobody who went to the schools I went to ever had to do this. Finally I started a franchise for a firm that just let you clear through them. They were also extremely dishonest but things were much better than selling worthless penny stocks. I've been here for over ten years and have always been one of the top brokers. I made enough money so I don't have to work anymore but realize that I'd have made many times that if I had been giving any reasonable opportunities. I've always tried to avoid meeting with the people who run my firm because I've learned that having a cleft is a big disadvantage in this instance. One day the head trader (an extremely dishonest crook) came by my office. A few days later she got angry at we when I noticed they had cheated me on a trade. She said "if you didn't work here you couldn't get a job anywhere else". What a terrible thing to say to one of there few smart and honest employees. Unfortunately what she said was hurtfully very acurate. Being in the financial industry makes me painfully aware of having a cleft lip every day. I've noticed that none of my relatives or friends have ever asked me about the market. I come from a wealthy background! They were totally insensitive to what I had to go through. I always wondered if this was because of my cleft. One of the 2 people I know with a cleft is in my business. He had the same experience. Now I work with a guy who has the right looks and is pretty stupid. He does almost as much business as me just from supportive friends and relatives. He comes and goes when the mkt opens and closes. I am in the office many more hours a day slaving away trying to do business with people who never met me. I make my clients money and he has always lost money for his friends and relatives. They mostly overlook his returns because he has the right image. Now his friends and relatives mostly buy my ideas and make money.
You need to figure out how people with clefts are treated differently and how to deal with this. Maybe it would have been helpful if my parents talked to my friend's parents when I was little about this. I've noticed that I have to "put out all the energy" in all of my relationships with guys, girls and family. I have to make the calls. From what I have been able to figure out this is typical of most people with clefts.
Having a facial deformity has a snowball effect which as a parent you need to understand and try to combat. For example if your kid is never invited to any parties you can't expect the kid to all that socially developed at that age.
As an adult I've noticed that other adults (including family) will do someithing to reject me and then spend their time trying to justify their rection. i.e. trying to convince themselves that I'm weird, etc.
Anyway, if you have any questions you are welcome to contact me at wizkid@villagenet.com.
By the way the internet is a great thing for people with clefts. It lets us participate in a huge range of things on level ground!

[Anonymous]

Smile back!! I find a big bright smile will either illicit a smile back or the person will be embarassed enough to look away!


I used to deal with it by putting my head down. But when I was 14, on my way home from school, for 3 days running I walked past a woman who just stared until the 4th day, I was so angry, I stared right back at her - as she came level with me, she said a very indignant "Sorry". You won't believe how much confidence that gave me to hold my head up from then onwards! Nowadays, I just smile at the person!


Questions: I haven't had many and those I have had have been from people who genuinely wanted to understand what was wrong with my lips and nose - not that I consider that anything is wrong with my nose/lip - I'm just an individual!
Good luck with your little girls...
Josi

[Anonymous]

BRIAN, AT WHAT POINT DO YOU STOP WHINING AND TRUNING EVERYONE ELSES STORY INTO YOUR PROBLEM???
mAN, dEAL WITH IT, OR GET SOME COUNSELLING OR SOMETHING.

[jenw]

Hi, this is an old comment but I want to respond in hopes that someone else can read this. I had cleft lip and palate, and I dealt with the staring and teasing and all that being different can hold. I'm 34 and a mother of 3 children. I am very happy and have a normal life. We are involved in our community and church and we have very involved children. I don't know as I can say that about every "normal" person out there. I know that my childhood was hard, but so was every fat kids, or every kid who couldn't read well or write well. We all have our "cross" to bear. Remember, this what makes us who we are. Next time someone stares at your child, think of how extraordinary they are, most people walk right by the "normal" ones and never even notice them. We ARE SPECIAL, and I wouldn't change a thing about me or my difficult childhood.