Five Year Old Son

[lishh32]

My son was born with a bilateral cleft lip and palate. Now he is going into Kindergarten.
He is very concerned about the other kids comments. We just found out he has severe far-sight problems.
Does the cleft affect the eyesight? Any witty comebacks for him when kids make fun of him? Feel free to e-mail me at lishh32@hotmail .com.
Also I would like to find an open chat for parents of cleft children.

[Rabidkiwi]

The best come back your son can use is one simple word.
"So" If he says it enough times they will leave him alone.
This does work. my mother is a first and second grade teacher
who has tried it with her students. It works, and its the
kindest way of dealing with it. I hope this helps your son.
You can help him by saying some of the things the kids might say
and have him say "So", this way he is ready for when it really
happens not only that but everyone is happy. Good Luck to your little 0ne


Rabidkiwi

[Brian]

Hi. I believe that there is a greater tendency for cleft people to have other problems above the neck. I guess with your son you can only guess if it is related.
I would suggest that you read this board religously. It is almost impossible, without education, to understand how the world will relate to your son. If you learn the rules of this world you will have the tools to enable him to grow up successfully. You should be very careful to pay particular attention to the posts of people who have clefts.
Kindergarten and first grade was about the time I can remember other kids starting to notice that I was different. I have noticed that most of the kids that made fun of me when I was little are not successful as adults (not all). Maybe you could ask the teacher to tell this to the parents of the kids who are bothering your son. This will give them an incentive to control their kids more. Your son will be stronger because of this and he will have greater insight into other people as he grows older. Adversity is not necessarily a bad thing. Good luck.

[Anonymous]

I think that at the age of 5 or 6 your child's teacher should be made aware of the problem if there is name calling. Sometimes having a discussion with children about differences and tolerance can make a big difference without singling out an individual. If that doesn't help, I believe the teacher should talk to the parents of the name caller. I think in most cases this would stop the problem at the elementary grade level. The principle should also be made aware of the problem. Good luck to you and your son.

[Trisha]

Rabidkiwi, I agree with what you said.


Even though parents can alert the child's teacher and class, children from the other classes may still make comments. If the child has a virtually fail-proof response, which will not escalate the situation, he will be less likely to be hasseled. I wish I knew such a simple response when I was in school. I was shy and I learned to spew out biting comments, which probably made most situations worse. >:(


The response, "So", can be interpreted by the other kids in different ways, such as "So, what does that have to do with anything?", or "So, what does it mean to you?", or "So, why should I care what you think?" Which is why it is just perfect. No explanation, no singling out, and it puts a question back onto the teaser. "Good One"

[CLS]

Hi,


I just wanted to add my 2 cents worth! I'm a child life specialist, (I work in the hospital setting - my goal is to reduce the fears and anxiety of children while in the health care setting in a variety of ways..) and I have a sister-in-law with a CL&P. She lives in a very small town and has been teased for the majority of her childhood. As I have worked with LOTS of children with disabilities and abnormalities and without, I have come to realize that educating them really makes them more compassionate and secure within themselves! Educating your son about his CL&P will enable him to respond to others questions-comments. Educating the teachers, aids, and other students is a great way to encorporate understanding. Your son has been through many things (dr.appts, hospitalization, surgery) that other kids his age haven't. It might be a neat experience for them to talk about what it was like to go through surgery.. hospitalization.. and talking about being different, but the same ie: I may a gap in the roof of my mouth, but I still have feelings..I may talk different than you but I can still build a tower out of blocks.. Ok, I hope you get my drift...


Good luck...
Ann

[Trisha]

Thanks for your response. I am not sure if it was meant for lishh, the author of the original post, or for me, because where it is listed.


Anyway, I am not a specialist, though sometimes I think I may be a "Real-Life Specialist". I was born with a bilateral cleft lip and palate 34 years ago. I finally came to terms with it, and life in general, around my mid twenties. All in all, I'd say I have a rather optimitist and compassionate attitude about people and life. I am successful in my career and relationships; I harbor no resentment for having been through what I went through.


That said, I cannot agree with a blanket response of encouraging all clefted children to speak up about their condition. It is really an individual thing; and usually very personal.


Some adults do not have the ability to empathize with situations different than their own; we can't expect kids to. Being too open about the most personal and sometimes (unfortunately) shameful thing can leave a child wide open for rejection and further cruel comments.


Teach your children whom is worthy of their trust; how to make "best" friends. Those are the friends to reveal such information to; anyone else can (not necessarily, will) use it against them. I liken the instance of a person talking too much about his / her cleft to those not ready to hear it to the person you meet at the grocery store who tells you her life story. Usually I pity such a person. You don't want that for your child. Your child will talk about it when s/he is ready and willing.


Another component to communicating begins within the home. If the child comes from a family like some, who "sweeps everything under the rug", s/he may feel some shame about having a cleft, and will be very embarrassed to speak to anyone about it.


All that said, I do believe that the right counselor can help to alleviate some of the stress of going through these tough situations. Children with clefts need to learn good coping mechanisms that will not cause to single them out as "different", but to allow them to grow and learn in a healthy, supportive environment.


Thoughts based on my own experiences, hope it's helpful. Take care.

[Peach's mom]

Hi, just wanted to say there have been a lot of good comments on this topic. I would like to share our experience. My daughter (now seven) was born with a cleft that split her face from the lip to the eyebrow. As she began school, she was in the process of tissue expansion of her cheek, to create enough skin to cross the expanse between her lip and her eye, so she had a balloon about the size of a big egg on the side of her face the day she started school. I felt it necessary to alert the teachers in her school of her situation so that they could help intervene if the other children were either curious or frightened of how she looked. I explained the process and asked them to use this explanation if their students had questions. On the first day of school, her kindergarten teacher had her sit on her lap and tell the kids in her class about her balloon. Some wanted to touch it, and some asked more questions which the teacher and my daughter answered together. My daughter's cleft is extensive and she will always look a bit different, which is fine. But because of that, I felt it necessary to equip her with the language of her cleft so that if she chooses she can give a simple, straightforward answer to a question. She doesn't have to answer, but at least has the language to do so. We have always spoken fairly openly about her cleft and her many procedures, so really, her cleft is about as big a deal as a scraped elbow -- not anything that interferes with her daily life. Because of this, I think she attaches no positive or negative value to her cleft. For us, this is good.
The children in her school have never given her any trouble, teasing -- and for this we are grateful. The school staff and administration have also been supportive of her. She isn't treated any differently, and that is our goal for her. She has no speech problems either, so we have been very lucky.


I want to let you know about a great program for elementary kids that has been developed by About Face International. It is called Unwrapping the Package: Dispelling Myths about Unusual Appearances. The program is one hour long and is available in many cities in the States and a handful of cities in Canada. The program teaches kids that while our outer wrapping may be different -- we all have different outsides -- that on the inside we all have feelings and have many things in common if we care to look further into the person, rather than the outside package. I've been presenting this program for nearly a year and have found good success with it. It may be worthwhile for you to contact AboutFace -- they have a web site -- and ask if one of their presenters may be near your location. The children are usually eager to share that they also know someone whose wrapping is different, but that it doesn't seem to matter and they get the idea of everyone being different and yet similar in so many ways. I ghighly recommend this program. It is not a panacea, but it does provide some food for thought even in those early years.


I agree that making any explanation to a teaser or a questioner isn't always the way to go. In fact, this program also teaches that it isn't okay to just run up and ask someone about their difference (whether it be facial or limb, or ambulatory or whatever). It enourages respect and responsibility in the children -- to respect others spaces and to be responsible for their own behaviour. The program also discusses teasing and staring. The kids are great with Unwrapping the Package.


Sorry to be so long. I just felt that another side to the situation should be thrown out there for your consideration. Thanks for reading and good luck to you and your little fellow.


Generally I found kids to be curious rather than mean, and once the curiousity is satisfied, then they can get on with what they do best which is playing and learning.


something that I think made a difference is that our school is quite diverse. We have not only a multi cultural school, but also inclusive ... our vice principal, for example is in a wheelchair, so our students are used to a variety of people and situations. I guess we are not so different after all.
Pat

[Linda]

I have not been dealing very well with children being unkind to my 31/2 year old daughter. Katie was born with a bilateral cleft lip and palate. She had an underdeveloped nose. We are currently looking for a pre-school and I am getting very discouraged. Every pre-school we check out, at least one child says something. Today s little girl said she looked like a monster...I can't handle much more of this without some sense of what to do. I just want to run away and forget the whole thing but I can't. My daughter is so bright and playful and I am so heartbroken and sad. I'm just beside myself.