Dealing with the uncomfortableness...

[samshane]

We are headed to Disney in less than 2 weeks. My oldest DD is 6 and she has alopecia. She has the most severe form of it and has no body hair at all - with just a few little fuzzies at the top of her head. She refuses to wear a wig as they bother her scalp and we make her wear a hat in the sun as much as we can - but we do not encourage her to hid it - it's who she is.

At a place like WDW it is so hard to deal with... we are used to it as she has had it for over 3yrs now. Last time we went we had many employees tell us about Make a Wish and other organizations that help terminally ill children. Thankfully she didn't quite get it at that time (she was almost 5) cause that would've been bad. She would run about 10 feet ahead of us and the WDW employees would let her go in through the fast pass lane without a fast pass. She got pins and always sat in the front of rides. Dh and I refused a lot of offers - but it's hard to come out and tell people that your child isn't dying. In fact, she never gets sick - her immune system is great, except that it attacks her hair follicles.

I know it's hard to suggest - but how do you avoid situations like this?? We tried to tell people as tactfully as we could - but in some situations it was hard, and akward. I had one woman crying over her last time... I walked away and she came up to Emily while Dh was with her and he said he had no clue what to say or do. I mean, she had already started into things when he realized what was going on. They gave her some of their pins and she started crying. When i got back they were just about walking away. Emily gave her a Tinkerbell pin back and it was just a awful situation to deal with.

Anyone have a similar situation and any experiences on how to handle it? Even if it's not hair loss, but something else? She is well known around here since she has no hair, but going to places that are crowded and big - and very geared towards kids - well, everyone assumes the worst when they see her.

Thanks in advance...

 

[tobias sampson]

What a difficult situation. I am really sorry that I don't have a brilliant suggestion, but wish you a very nice trip. Maybe you could make up a little business card that you could tactfully hand someone with the basic info on alopecia when it comes up, and explain the situation to your little girl. That way she isn't shocked when/if it comes up.

 

[HM]

I agree with talking to your daughter about possible situations and why they might occur at WDW. I think she's probably old enough to get that people are mistaking her condition for something else entirely.

Have a wonderful trip...I'm sending Pixies! -HM

 

[tlbwriter]

I think she's probably old enough to understand that some children lose their hair because they are very sick, and these people think she is sick too. Maybe she could start telling them "It's okay, I'm not sick, I just don't have any hair."

 

[ahutton]

I don't know if this would work, but if something tries to offer something you could respond by saying "we just want her to have a normal WDW experience, lines and all" and see if that gets them to let you guys enjoy your vacation without having to explain to everyone her personal information.

 

[hsmamato2]

I have a friend w/a 6 year old dd with the same condition...I'm sure your daughter is a lovely little girl also... At 6, I would explain to her that sometimes some people get sick, and they have no hair, so some people at wdw may be "silly" and assume she is ill also. Then I'd prepare her with something to say that empowers her, and that she is totally comfortable saying, should the need arise,like
"It's ok, I'm not sick, I have alopecia and I'm just fine, thank you!"
But that's me- I think all those people intruding on your family is a bit strange...when I see my friends dd, all I see is a normal looking little girl with no hair! that's it!

 

[bethyg]

Having been an Oncology/Hospice nurse for many years, I sympathize with your daughter's condition. Alopecia is difficult for many cancer patients, and in most cases, is only temporary. Your daughter's condition is different in that this condition will not resolve in 3-6 months. I would first suggest you relax a bit and look at your situation a bit differently. While I'm sure many people love to interject themselves, get tearful and emotional, etc..... they are doing this (most of them) out of compassion for your little girl. Even if it gets old sometimes, compassion should always be applauded, not resented. At her age, she should understand very well how they "misunderstand her condition" but how blessed she should feel at the compassion and love many have shown her. I would appreciate loving and thoughtful gestures much more than aghast glances and whispers from myopic people. If the WDW CM's let her on a few rides and give her "special treatment", it really isn't much different than what is shown to kids wearing a birthday button, or just a CM spreading a little pixie dust to brighten someone's day. I would suggest speaking with your daughter's physician, child psychologist or other health care expert regarding how she, as well as your family, can handle uncomfortable comments. Her feelings and reactions at this age will be based on how she perceives you reacting, not only during exchanges with strangers, but especially after, when it is you and your husband talking about your frustrations. Obviously this will not be the last time you will have uncomfortable situations, and with her shortly becoming a tween-ager, her looks and appearance will mean a great deal to her psychologically. My first thought would just be the smile and say thank you. No need to expound or share. If she hasn't visited some local stores, Am. Cancer Society, or stores specializing in cancer/women's heath, there are many options for a "Cranial Prosthesis" other than wigs, ballcaps or cathy-caps. Some are very fashionable and in-style, and most insurance companies, with a physician's order for a "Cranial Prosthesis" will reimburse for a portion of the expense. Many people choose to wear nothing at all (except to protect for spf and inclement weather) and that's perfectly okay too. I always love the idea of empowering individuals regarding their health care, so if she wanted, she could smile and proudly announce she's not sick, but thank them for their kindness. Humanity can be a wonderful thing. Reward it, please don't encourage an attitude of bitterness for an innocent misunderstanding.

 

[Nancyg56]

Having been an Oncology/Hospice nurse for many years, I sympathize with your daughter's condition. Alopecia is difficult for many cancer patients, and in most cases, is only temporary. Your daughter's condition is different in that this condition will not resolve in 3-6 months. I would first suggest you relax a bit and look at your situation a bit differently. While I'm sure many people love to interject themselves, get tearful and emotional, etc..... they are doing this (most of them) out of compassion for your little girl. Even if it gets old sometimes, compassion should always be applauded, not resented. At her age, she should understand very well how they "misunderstand her condition" but how blessed she should feel at the compassion and love many have shown her. I would appreciate loving and thoughtful gestures much more than aghast glances and whispers from myopic people. If the WDW CM's let her on a few rides and give her "special treatment", it really isn't much different than what is shown to kids wearing a birthday button, or just a CM spreading a little pixie dust to brighten someone's day. I would suggest speaking with your daughter's physician, child psychologist or other health care expert regarding how she, as well as your family, can handle uncomfortable comments. Her feelings and reactions at this age will be based on how she perceives you reacting, not only during exchanges with strangers, but especially after, when it is you and your husband talking about your frustrations. Obviously this will not be the last time you will have uncomfortable situations, and with her shortly becoming a tween-ager, her looks and appearance will mean a great deal to her psychologically. My first thought would just be the smile and say thank you. No need to expound or share. If she hasn't visited some local stores, Am. Cancer Society, or stores specializing in cancer/women's heath, there are many options for a "Cranial Prosthesis" other than wigs, ballcaps or cathy-caps. Some are very fashionable and in-style, and most insurance companies, with a physician's order for a "Cranial Prosthesis" will reimburse for a portion of the expense. Many people choose to wear nothing at all (except to protect for spf and inclement weather) and that's perfectly okay too. I always love the idea of empowering individuals regarding their health care, so if she wanted, she could smile and proudly announce she's not sick, but thank them for their kindness. Humanity can be a wonderful thing. Reward it, please don't encourage an attitude of bitterness for an innocent misunderstanding.

Samshane: I am so sorry that you have encountered uncomfortable situations with your little girl. I think that the above poster has a wonderful way to address it. I agree that while it is diffcult to deal with, the fact that people reach out to your family is nice. I have been reading threads that address how people have reacted to children with spcial needs, and it was heartbreaking. Your situation is different because your child has an illness that is visable, and some of the children that were discussed had challenges that were not able to be seen, but the parents were sometimes driven to tears. Tough any way that you look at it.

God bless your family, and a little your way.