Me again...Kindergartner with pws. - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-20-2005, 08:29 PM
cknull
 
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Default Me again...Kindergartner with pws.

Okay so, today I enrolled my daughter for next semester in public school.* The teacher mentioned how she prepares the class ahead of time when a new student is coming in and has the class draw pictures for the new student to give them when they arrive their first day to welcome them.* Should I ask the teacher to mention the birthmark on my daughter, such as, "soon, we will have a new kindergartner with us who has a* special attribute about her.." (or something to that effect) Or do you think this is setting my daughter up in a way that could go bad?* Geez, I don't know.* *It seems if they knew ahead of time it would ward off the initial, "what happened to your face?", "Is that a rash?", "Why is your face so red?" type of questions.*

After meeting with the teacher today and visiting her classroom, we were walking into the hallway when another little student walking by, asked, "what happened?"* I told her that it was a birthmark, she was born with it, and it doesn't hurt at all."* The little girl said, "oh" and kept on walking.* Violet and I have practiced how to respond to the questions but I don't want it to be an issue or focus point her first day of Kindergarten.*

What do you think?* I also don't want to make my daughter paranoid about it by talking to her about it too much.* But I want her to be prepared to answer the questions gracefully.* Help!*

Thanks a bunch

Cindy
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  #2  
Old 12-20-2005, 08:44 PM
eprmo eprmo is offline
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Default Re: Me again...Kindergartner with pws.

I think the way the child in "the hallway" reacted will be the way it will be.. My daughter had a large H on her nose, and that's the way it was ...some would ask, some would stare, and some would just ignore her...

My daughter used to talk to people about her nose, and when the kids would all listen to her,,it made my daughter feel "important" not different. Little children think very differently then we as adults do,,, My daughter felt "EMPOWERED"..like she knew more then the others...

You could talk to the teacher before-hand..so as to be sure she doesn't hear "name-calling" related to the PWS..but lets' face it,,all kids tease each other about something,,or we wouldn't be worrying about this in particular. I wouldn't single her out as a topic of conversation,,,

Just let the teacher know it's a sensitive subject,,and if anyone wants to know about it,,they should talk to your daughter. Maybe your daughter might want to talk about it,,that's really up to her... because she is there on her own, and has her own voice...

Elissa
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  #3  
Old 12-20-2005, 11:04 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Me again...Kindergartner with pws.

Hi,

I agree with Elissa. Just talk to the teacher about in the class room, but would not have the teacher tell the kids about the birthmark unless they come up to her directly. Do not have the teacher treat her any different then the other children. That will make your daughter feel more in place. If or when your daughter wants to get up in front of the students and educate them about her PWS or just individually I would let her but let her do it on her own (with out you around). The stares, pointing, comments will always be there. Do not be suprised if she comes home some days crying because somebody made fun of her PWS. You have to teach her to let the comments roll off her shoulders and to not take them litterly. It will take time but hold in there for the better of statisfation and be strong for your daughter.

Hope this helps.

Hank
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  #4  
Old 12-21-2005, 12:13 AM
cknull
 
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Default Re: Me again...Kindergartner with pws.

Thanks guys.* I'm having separation anxiety and the reality of my not being there to buffer anything that might come is hard.* It's new and anything new is uncomfortable.* I'll be okay...I'm learning.* Thanks for the advice...I'm sure I will be here a lot!!!* God gave me a tough little cookie. I just keep forgetting He is in this with me. *
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  #5  
Old 12-21-2005, 07:04 AM
nickbar nickbar is offline
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Default Re: Me again...Kindergartner with pws.

I know the first day of school is hard no matter what.. I cried my eyes out on the way home... of course my son does not know this. So hang in there! It is a tough job being a parent and having to watch them go into the world without us right beside them. In a few weeks...you;ll be amazed. I agree with the above... it will be helpful for the teacher to know just in case students are not reacting well or if your daughter isn't handling it. If she shows any sign or comes to you with concern...that she isn't feeling comfortable or not fitting in.. make it about being new and it takes time to adjust.... not about the birthmark making her different. Make sense? Hopefully the teacher already has plans on how to connect children with others so the adjust quickly.

WISHING HER and YOU a great beginning.!

Corinne
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  #6  
Old 12-21-2005, 09:33 PM
cknull
 
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Default Re: Me again...Kindergartner with pws.

Thanks Corinne.
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  #7  
Old 12-30-2005, 06:38 PM
QCBirthmark
 
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Default Re: Me again...Kindergartner with pws.

I can feel for you. I think how you are handling it is great. only thing I would possibly suggest is maybe talk w/the principal. (They like to be involved lol) I pray for your sake that your principal is better than ours...she made it seem like I was inconviencing her w/this discussion but once school started she finally got it after asking me what happened (Gabbey started school right after a surgery) I wanted to smack her upside the head lol.

Good luck sugar.
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  #8  
Old 12-31-2005, 11:31 AM
Brad
 
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Default Re: Me again...Kindergartner with pws.

It's nice to find a site like this and read about some of the same issues our family is dealing with.* Our little guy started kindergarten this year and he has done real well.* He hasn't had a surgery since summer, so his class hasn't seen what he looks like after a treatment.* We have surgery scheduled for next week, but we're thinking of cancelling it because my wife and I have some concerns as to how he will be treated after.* *We're thinking that maybe we should just limit treatments to the summer.* The only question is, will this hinder improvement or cause more problems with his PWS?* * When we first started treatments, about 4 years ago, the Dr. told us it would take about 6 treatments.* We're now gong on number 15, and to be honest, I don't see much if any improvement.* From what I've read, it sounds like PWS is a life long condition and will require ongoing treatments.* I sure wish the Dr. had told us that up front.* We're in MN, and the care has been good, but it's a little confusing as to why we couldn't get a decent prognosis. (we've asked a few times and 2 different Dr's have been vague)* Anyway, thanks for hearing me out, and best of luck to everryone out there.
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  #9  
Old 12-31-2005, 07:24 PM
nickbar nickbar is offline
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Default Re: Me again...Kindergartner with pws.

Hi Brad,
Most pws require continous maintence. It is ideal to keep treatments on a regular basis to keep the "refill" at bay... in other words not allowing it to darken back to where you started. (I hope others can chime in about this too). If you aren't seeing results then I would suggest getting a second opinion (even email the ask the expert dr. Nelson on the home page). A different setting/laser might be necessary to get max. treatment. Not all PWS are the same...so different stains will require different tx. and lasers to get the most clearing.

Corinne
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  #10  
Old 12-31-2005, 07:33 PM
hankbartenbach hankbartenbach is offline
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Posts: 533
Default Re: Me again...Kindergartner with pws.

Hi Brad,

Welcome to the group.

I am 23 with facial PWS.

Some PWS is a life long condition. It really depends on the level of your son's PWS. The darker and deeper it is the harder it is to be removed. Doctors can not esitmate how long it will take because every person is going to be different. I have been doing laser treatment for 18 years now. They told me when I first started that it should only take a couple of years and just started adding from there.

As far as going to Kinagarden I wouls suggest keep the treatmetn scheduled. The children did not treat me any more or less after laser treatment. When I started when I was five years old I was going every other month. The children will get use to it after the first treatment just like they had to get use to him being around at the begining of school. Elementtry was the hardest years for me but it got better as the children started to except me for who I was. So hang in there and keep those laser treatments on schedule.
If anything the laser treatment will make the PWS from getting worse. You should ask family members if they can tell a change of his PWS because you live with him everyday and they do not.

Laser treatment has advanced so much more then when I was a child. Stick with it as technology gets better they might find a way to completely remove PWS permently. If you would like to see pictures of my PWS as a child you can go see pictures on my website www.hankspws.com

I hope this has help you. If you have any other questions please ask we are all here for you.

Hank
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