Replies to This Discussion

Permalink Reply by maude on July 7, 2011 at 1:59am

hi fidgety, what a post, my child lost her hair at the age of 4.5 yrs old, i wouldnt of allowed a wig to be worn at that age if im honest, becouse i think it would of done my daughter more harm than good.

im a strong believer its about what the kids want, ask some adults here who have been made to wear wigs at young ages and see what their view is, i would also give short sharp answers to your daughter when she asks about alopecia, you are in a horrid predicament, what is the charity thats funding it?

all the best x

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Permalink Reply by PaulJ on July 7, 2011 at 3:26am

Hi Fidgeyu,

What does your daughter want ? I know she is only 4 and I don't know if she has said anything, but arent kids at that age fairly clear on what they like or dislike. has she made any indication as to what she likes\wants

I have been AU since I was 4, and I wore a wig from age 5 through till I was 17 or 18 (I think), I never had a choice about wearing a wig, it was just made and I wore it. My parents loved me , dont ge me wrong but some decisions were poor ones I feel (Easy for me to look back in hindsight and comment - I know they did what they thought was best but thats life). Alopecia was never discussed in my family from what I recall and that, and wearing a wig soon started to make me feel that I was something to be hidden, that what I had wasn't a good thing and should never be talked about. This soon constructed itself into my belief system, that I was to be hidden. Reinforced by the fact I want allowed to be seen bald, I had to hide if people came around and my wig wasnt available, i wasnt allowed to do things that would damage the wig . That doesnt bode well for the teenage years as when you grow up feeling like something is shameful about you getting through the teenage years is a lot harder. Ive suffered a lot due to those feelings and issues and its wht I feel compelled to post here as I dont want to see it again to someone else.

My personal view is that everything should be open and honest with your darling daughter and what she wants is the best course of action. If she wants a wig then get a wig, if she wants a bandana then let her wear one, but forcing something on her she doesnt want can be detrimental.

Im sorry this is happening to you, I am more than happy to write a letter or an email that you can sent to your Ex detailing my experience so that everyone who has a viewpoint on this can read the experiences I have had if you think that will help.

Paul

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Permalink Reply by Fidgety on July 7, 2011 at 4:31am

Thanks for the advice. One comment mentioned that I should be grateful the Dad cares. Actually it is the grandmother who is engineering what she has decided. If he cared, he would actually speak to the parent who has day to day care and mention that

My daughter has expressed an interest in having hair. She had a full head of hair last year, and wants to be like her friends. I would like to get her a wig to give her a choice about what she does. But for me it is about the right type of wig suitable for an active 4 year old, if she does have one, I want her to be able to do everything a normal child does, like swimming, dancing and playing.

The wig he is choosing, is not secured. It's just a wig, almost off the shelf. So, for me this defeats the object of having one, as she will never have one.

I am not embarrassed by her Alopecia, she is at school, her teachers are aware and so are her classmates. She wears bandannas and hats, mostly to protect her head from the sun, and she likes wearing them. When someone comes to the door, I do not hide her away.

I want to give her a choice and want to do more research in getting a wig, the right one for her. The charity in my eyes will waste their money.

The charity paying is the little princess trust. Its a UK based charity.

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Permalink Reply by PaulJ on July 7, 2011 at 10:08pm

Has this been communicated to the father\Mother at all or are they just ignoring it and you ?

I hope things are better today !

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Permalink Reply by cindy Babs on July 7, 2011 at 9:35am

hi. i would be upset with her father and ex mother in law as well. they should have made you aware and included you in the process.....however...try to relax about it. she may end up with a beautiful PERFECT wig. wait and see. she won't wear it if she doesn't like how it feels or looks.
i would imagine whomever fits her for the piece will have the expertise and experience to give her something that is suitable for her in every respect. and speaking as a mother of a daughter with au it will be nice to have more than one wig to rotate. she's active. hang in there and try to let it go. it may end up being just great. i wouldn't be happy with the situation either but things have a way of working out. best..... :)

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Permalink Reply by maude on July 8, 2011 at 1:53am

fidgety, i think it will be a sapphire which is a kids wig human hair wig, absolutely beautifle, it is heavily processed and only comes in 4 colours, just below the shoulders, rest assured if this is the one then its sweet, there are also a few synthetics out there that may be funded, little princess trust are amazing and i have been speaking with them now for a few years, incredible charity that helps mainly children who are poorley, but as alopecia becomes more to the forfront we are helped too

try and stay relaxed flower, nans hurt too , so maybe nan getting involved and taking the lead is her way of doing the one and only thing she can do and is pay for something

we know how alopecia for our kids makes us feel like we cannot do anything apart from support, nans support is with wigs and paying, its a tricky one, just be careful of the effects on your princess, we do our best as parents and thats what you are doing

feel free to email me x

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Permalink Reply by Fidgety on July 8, 2011 at 4:39pm

Thanks for the posts, now i am dealing with the aftermath.

I am sorry Maude but the wig is horrible. I saw her on Skype for 10 minutes earlier. The hair is nothing like her own hair, the colour is nothing like her own hair and the style made her look like Alice in wonderland and it looked like something you would wear to a fancy dress party. There is far too much hair for her little head. It is straight long hair to just below the shoulders. Simply awful.

During the 10 minutes that I spoke to her, she was scratching constantly. Today was not a hot day, and as she scratched the wig was lifting off her head. I asked her if she could take it off easily and she simply lifted the fringe and off it came. Her dad had to straighten it whilst she was on Skype. This is whilst she was sitting still.

For me, he has done a lot of damage, he has told her that she can wear it to school. This wig is my worst nightmare, it would fall off at school and make her a point of ridicule, everything I want to avoid. She is currently much better off in her hats and scarves until a suitable wig can be found for her.

Anger is too light a word to express how I feel.

The grandmother pushed him towards this and she is wrong. The decisions about these things should lie with the parents with the input of the child.

I am going to take control of the situation when she returns on Monday, I have already found someone that may buy the wig, and we can put the proceeds towards a more appropriate more realistic wig.

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Permalink Reply by maude on July 8, 2011 at 7:51pm

i can hear your pain, love and hugs on this journey, wish i lived closer to provide to hand support and a coffee
xx

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Permalink Reply by Fidgety on July 10, 2011 at 4:36pm

Had a bit of a revelation. Today I spoke to the father, my daughter is being returned tomorrow from her access visit.

His mother has admitted that the wig is wrong (she pushed him towards it), they had to take it off my daughter due to the discomfort of the piece. They are returning it to the shop this week. Thank god.

Now, finally, he is prepared to listen to me.

Don't like to say I told you so, but....... :o)

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Permalink Reply by Rose Marie' on July 10, 2011 at 6:21pm

Hi

Alopecia areata and families is sometime a difficult thing to navigate and I can't imagine it easy when there is geography and distance between you all.

Your daughter is very young and even though your ex and his mum have felt a hairpiece was going to be the answer, after reading through your posts it sounds like things haven't worked out as they had hoped, which hopefully would have helped them to understand that working cooperatively with you and your daughter will be a little more helpful.

I've always taken the lead around hairpiece decisions from my daughter (she was older though 12 when she lost her hair). I think mums and dads are their child biggest advocates and as long as you involve and engage your daughter with all the decision making things will be ok. As a 4 year old she will not have the life experience to make fully informed decisions about how her choices will impact her...that's our job as parents...to help them with that apect of growing up. You sound like a wonderfully proactive, caring mum who is doing the best for your daughter.

Keep educating yourself about the alternatives available and read through the information here, there are so many good posts explaining people's experieces and journey's with this condition.

If I can be of any help please feel free to pop into my page.

Take care

Rosy

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