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  #1  
Old 12-09-2005, 04:43 PM
cknull
 
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Default Kindergartner with PWS...help.

My dd has pws on the right side of her face covering her eye and part of her cheek. She does get asked about it, to which she responds, "it's a birthmark." The thing is, I've kept her home from Kindergarten to homeschool her because of my fear of her being teased. She has friends at church and they do not treat her any different, but they've known her since she was a baby.

I've been seeking professional advice about keeping her home or sending her to school, the advise is send her to school and let her learn to deal with the reality of it (with our help of course). I'm so confused and mixed up emotionally about this. I know I can't hide her from the world but I need help in dealing with this and know we need to address the school issue early.

I do not know of a support group here where I live which is in Central Ohio. She has been tested for Sturge-Webber and checked for glaucoma, both of which were negative. Any advice would be helpful. Thanks so much.

Cindy
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  #2  
Old 12-09-2005, 05:30 PM
nickbar nickbar is offline
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Default Re: Kindergartner with PWS...help.

Cindy,

I agree with the professionals you saw, though a bit more sensitive approach then "deal with it".* *Please understand my following opinion is only coming out of caring not to be taken as criticism...this isn't easy and as a parent we try very hard to do everything we can right...if only they came with a manual.* But, you've made a step to research ideas and thoughts because you care for her so much and are only motivated out of protecting her... I can tell by your words.* *I think the most important thing you can do for her is to over come your own fears or at least hide them from her.* The largest impact on her self-esteem will come from her parents... and though teasing can be very harsh and damaging... the children need a strong foundation at home....but keeping her at home only confirms to her that she should be afraid of conflict and that she has something to hide.* *Trust me, this will be worse in the long run then teasing from rude children.* She might not understand ever that you wanted to protect her...she might think you wanted to hide her.* Even if she does understand the difference, her interpretation might come out negatively anyway.* If you can find a way to teach her that she is special, she is not her birthmark!* and anyone that has a negative comment about it has the problem...not her.* * I have found that the best way to overcome a lot of the teasing is to educate the children.* I know parents have gone to school and with the help of the teacher they have discussed the child's "difference" with the class (this was not a birthmark situation...but same idea could apply).* Once the children understood the facts they rallied around the child and soon the child was not treated any different then the next child.* Children often tease out of ignorance...once they understand...they are usually the best supporters.*

Good luck with your choice... it isn't easy.. she is very lucky to have you!

Corinne
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  #3  
Old 12-09-2005, 08:39 PM
hankbartenbach hankbartenbach is offline
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Default Re: Kindergartner with PWS...help.

Hi Cindy,

First of all welcome. You came to the right place for your questions.

I am 23 with facial PWS/SWS.

I can not agree more with Corinne. She will get the teasing whether she goes to public schools or not. I have lived with it every day of my life. I am sorry to be the one to tell you but elementry school will be nothing compaired to middle school it will be a lot worse. She needs to understand her condition so she can educate the children around her so they feel more comfortable then she will feel like she fits in better. I also agree that you should never try to hide her because of her PWS. It will cause her to have a sheltered live as an adult. If you have other children treat her the same NO SPECIAL TREATMENT. Make sure your daughter understands that there is a reason why she has her PWS otherwise god would not have put one on here. Call it her angle kiss. Make it into something good instead of negative. Depending on the level of PWS she has she might have it awhile. In my case I will probably have it for the rest of my life unless technology finds away to completely remove deep PWS.

If you are interested in reading a paper I wrote on four stages of soical issues. It might give you some ideas on getting your daughter more active around other children as she gets older. The paper is on my website www.hankspws.com

Also, I have SWS but do not have glaucoma even though I have PWS in my eye. I strongly recommend getting her pressure checked every six months to a year because glaucoma can start any time during her life and most of the time she will not even notice that she is having any problems until she has already lost vision. So I again strongly recommend staying on top of her check ups on her PWS in her eye.

If you have any other qustions please ask we are all here for you.

Hank
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  #4  
Old 12-09-2005, 08:58 PM
cknull
 
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Default Re: Kindergartner with PWS...help.

Thanks Corinne.

I suppose "deal" was not a choice word but rather "cope" is what was meant. I think we, my husband and I, have decided dd will go to school after the winter break. I really needed to hear from people who know what it is to be in my position and what we can expect. I have heard of parents speaking to a class about the uniqueness of their child and that it has helped tremendously. Is there any way of talking about it specifically to children that's not too wordy or hard to understand? I also don't want to make a spectacle of my daughter either.

Thanks Hank,

We don't actually hide her, we do get out and have a life. But I'm with her. There was a time that I used to go to our local YMCA to work out and she would go in the kidzone. One day, when I told her we were getting ready to go she began crying. When I asked her what was wrong she said the other kids didn't want to play with her. I asked her why she thought that and she told me it was because of her birthmark. I asked her if someone had said something to her about it and she said no. I asked her why she thought it was because of the birthmark and she replied, wailing, "Because it's so big." I eventually found out from her it was just that the other children were playing already and didn't want to break from what they were doing. She didn't want to play what they were playing either though. So, I had her recognize that the birthmark issue was not true and was never the issue. But she really thought it was because of that.

We are very open with her about it although we don't point it out unless asked about it or she mentions it. She is an only child but I'm pregnant. She asks what the baby will look like and I say he/she will probably look like you because they will be your brother or sister. She will ask, "will it have a birthmark like me?" And I always say, "I don't know, maybe, maybe not. It's really up to God in the end."

I'm just working through some mother protector issues. I'm glad I found you guys. Thank you.

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  #5  
Old 12-09-2005, 10:41 PM
nc
 
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Default Re: Kindergartner with PWS...help.

hi there, i have a 2 yr old little boy Josh [my second son], who has a pws in the exact place , over the eye, the cheek up to his ear and into his hairline. He has no sws nor glaucoma so far. He is going in for his 3rd laser treatment on Wednesday, under Prof Harper at Great Ormond Street Hospital for children in London. We are doing our best to remove it. I had a hard time too, so much guilt etc.... Josh is starting at a play group 2 mornings a week from January. My attitude is.... he is normal, healthy and so gorgeous. One minute at GOSH hospital make you realize it is only cosmetic..... It is my role as a mother to teach my kid to love himself, be proud of himself and be confidant, because if i don't instill that in him he will go through life complexed and helpless. If he doesn't love himself no one will love him... He has to be tough and understand he is special, if i kept him at home he would never develop those skills. Babies are harmless, only honest and curious. Sure its hard, people stare and make stupid comments. It is your role to be strong, polite and open and explain that its just a birth mark it doesn't hurt him and nor can it hurt you. You cant hide forever and rather let people know what it is, educate them and cure their curiosity. Once you have done that they don't even see the pws anymore, as the person and personality is bigger than the pws.... be brave and challenge the world, you will win... don't hide, that is weak!!!!!!! people with pws are SPECIAL people, they add colour to this world.
I hope my mail helps,
NC
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  #6  
Old 12-09-2005, 10:51 PM
nc
 
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Default Re: Kindergartner with PWS...help.

Its NC again, how is this for specail. Adam my older son, who is 4yrs old, was very upset when i told him josh was going in for his 3rd treatment. he asked "why we are taking his birthmark away," i replied " because we don't want him to have any red on his face." Adam replied in horror "but if we take the red away, it wont be josh anymore" and that make me cry.... children are V. accepting as long as they know what it is!!!!
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  #7  
Old 12-09-2005, 10:56 PM
cknull
 
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Default Re: Kindergartner with PWS...help.

NC,

Thank you for your post..especially the "be brave and challenge the world" part. I had also forgotten that I have friends who have said the same thing about Violet concerning her pws. That she just wouldn't be V if we lasered it off. We've decided to let Violet decide if she wants to do that...so far she does not. I'm going to write your quote above on an index card and tape it somewhere I'll see it every day. Thank you for writing!

Cindy
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  #8  
Old 12-10-2005, 12:32 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default Re: Kindergartner with PWS...help.

Cindy, another thing I thought of is Lisa, she is on the birthmarks.com group and I recently met her in person and her daughter Addie... she has a great sense of humor and her daughter Addie (now 17) has done very well with handling the public.... I think Lisa has some great advice on how to build up our children, how they make it someone elses problem (when they are rude), oh..I could go on and on... anyway... if you'd like to get into contact her, let me know or you can join the discussion group on birthmarks.com... it is a lot of email... or I can have Lisa contact you privately.

HUGS

Corinne
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  #9  
Old 12-10-2005, 08:17 AM
mikeb23ft
 
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Default Re: Kindergartner with PWS...help.

Quote:
Originally Posted by nc
It is my role as a mother to teach my kid to love himself, be proud of himself and be confidant, because if i don't instill that in him he will go through life complexed and helpless. If he doesn't love himself no one will love him... He has to be tough and understand he is special, if i kept him at home he would never develop those skills. Babies are harmless, only honest and curious. Sure its hard, people stare and make stupid comments. It is your role to be strong, polite and open and explain that its just a birth mark it doesn't hurt him and nor can it hurt you. You cant hide forever and rather let people know what it is, educate them and cure their curiosity. Once you have done that they don't even see the pws anymore, as the person and personality is bigger than the pws.... be brave and challenge the world, you will win... don't hide, that is weak!!!!!!! people with pws are SPECIAL people, they add colour to this world.
I hope my mail helps,
NC
Fantastic. I'm not sure, but I'm confident that this is how my mother feels and has always felt about my PWS. Very well said...

Trying to keep your child from the public will certainly cause more harm than good, when the child grows older and realizes what has been going on. You don't want your daughter to feel like you have been hiding her away from the public view. I would highly reccomend a public kindergarten and school. How other people percieve your daughter will be directly determined by how your daughter sees herself. Teach her confidence and she will excel, I am certain! Good luck!
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  #10  
Old 12-10-2005, 04:15 PM
alexasmommy
 
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Default Re: Kindergartner with PWS...help.

Hi !! Your daughters PWS sounds very similar to me daughters. She was 4 in May.
I started her in Nursery SChool when she was 3 and now she is in Pre K. She goes to a private school. My children are both in private schools.
You got such wonderful advice, that I really dont have anything to add.
Just know that you are not alone......
Elena
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