Replies to This Discussion

Permalink Reply by Trina on July 25, 2008 at 1:27pm

Hi Tammy,

As a person with AU and a child with AA it is hard to accept things. My mom wanted to be the cure and the truth is she was not. I had to learn to self love me, but her support and encouragement got me through it. As an adult I have done most anything you can thing of from rock climbing to swimming with the dolphins. As a parent of a child lied the struggle to within.. I could deal but I know the road was hard. Understand that she will find her way. Try exposing her to kids that have it on this site and just being there for her. Have her try and write down how she feels and then you all talk about them. There is also the Children's Alopecia project that allow you meet other kids that may live near you and maybe they could meet or become pen pals. I hope this helps you and that you remain strong. This is a journey maybe not the best one but believe that you will learn things about yourself while helping your daughter along the way.

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Permalink Reply by abby lawson on July 25, 2008 at 1:39pm

All of you are so amazing I don't know how you do it.We are going to the CAP camp in Sept.Abby does write all the time and she draws pics as well,but she and I always end up crying when we read them.I think exposing her to this site is the best thing for both of us .Thanks again Tammy

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Permalink Reply by Trina on July 25, 2008 at 1:47pm

Abby,

crying is good. At least she understands that you care. My mother cut her hair to make me feel better. And I though this woman is crazy and loves me. I had those depression issues and went to a therapist as a teenager and just had to learn to fight. One thing this condition will give you is the will and the survival skills to fight back.

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Permalink Reply by abby lawson on July 28, 2008 at 11:44am

Hello Trina,
sorry it took so long for me to reply we had a small fire ,but everything is okay.
you must be a very strong woman to be dealing with AU and a child wiyh AA.Thank you for your words of encouragement it means alot.Abby is going to CAP camp in sept. I feel sure this is going to be a good thing for her as the site has been wonderful.Abby is also signed up with preteens with alopecia as well .Thanks again for everything just hearing from people going thru the same things has been so helpful and inspiring.
Thank you
Tammy Lawson

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Permalink Reply by Rose Marie' on July 25, 2008 at 2:22pm

Hi Tammy

It was difficult, I know that much and what you are dealing with at the moment is very hard.

Our journey with this condition suited my daughter but may not be spot on for yours - keep talking with her. Explaining why you think things might work or why you think they won't. Then wait for her input. Learn her fears and what makes her not want to do things. Make her realise she has the power to be whatever she wants and this condition does not need to control her unless she wants it to. She has choices (not about her hairloss) but how she wants to handle it.

This is a little of what we did as a family. It worked for us.

I did not take her out of school, but I made sure she felt totally safe and supported while she was there. I had two wonderful ladies with alopecia that twice went into each of her schools and educated her class on what this condition was and how my daughter was still all she has ever been. The first time my daughter did not have a wig but wore a hat and it was obvious something was wrong. Once the children were educated any bullying was stomped on quickly. She felt safe with her teacher who made an effort to watch her and the children. It worked well for us. (not perfect there were bullying episodes - but because it was in the open they were quickly sorted). I always have felt secrets become a burden - but this is something that can take a while to make a child understand. Keep working with her. She may be totally resistant at the beginning but your life experience is far more than hers and you already know that some of her behaviours at the moment are going to be detrimental to her in the future.

Depression is a problem with those dealing with this condition. But it can be got over. Therapy is important as sometimes your daughter may need to express herself to someone that does not know her and that she knows will support her and help her.

For me sitting in her room isolated and crying is not an option. Crying together to make positive change is an option. You are Mum take a little control back. It won't be easy but you know your daughter and this behaviour is not working for her. I understand the fear that you may hurt her. But you have to go a step further and realise that your intention is to help and you need to guide her with strength and knowledge and find a way that works for you both. You are an important part of this equation. I met a lot of resistance through these teenage years with my daughter to what I was suggesting. I could never make my daughter do anything but I was incredibly persistant and consistant with my guideance and behaviour strategies. Emersing myself and my daughter in a culture of meeting many dealing with this condition helped a heap. Meeting people like Anna Fitzpatrick and Martine Richards both truly beautiful people dealing with this condition, helped my daughter understand that this condition did not make her ugly - just a little more unique and individual.

Dads are extremely important in this mix. Don't let him slide away from her because this hurts to much. He needs to get in there and connect. No walking away because it's just too hard. My husband found this very difficult at the beginning. He couldn't save his beautiful little girl. But the truth was in the end he did save her and continues to support and encourage her. Give him back the job of doing her hair - let them talk about how sad her hairloss is but how much he still thinks she is beautiful and how he still wants to be close and do the hair braiding but maybe now it could be changed into a head massage.

For you Mum the biggest thing you can do for yourself and your daughter is to trust yourself. You love your daughter and you do know her well. Work with her to be all she can be.

Hope this helps a little. Sorry it's like a jolly book.

Take Care

Rosy

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Permalink Reply by abby lawson on July 28, 2008 at 12:32pm

Dear Rose Marie,
Thank you for your words of wisdom and for sharing with me a few ideas.I spoke with her father about these things and I did not realize how upset ,and scared he was.Her father wants to do her hair ,but he does not want to upset her either and he felt like it was just a mother daughter thing.Abby is a daddy's girl but since her hair has fallen out she has drifted away from him.I told Abby that her dad wanted to do her hair again and she said no because he don't know how.We are going to stick to this and hopefully she will give in. We don't allow her to sit in her room any more when she gets upset she has to do something constructive.I have taken her to a counselor and Abby would not speak to her so the counselor said she could not make her speak so we have to try something different.Abby seems to be okay as long as you don't talk about her hair.I talked about it everyday now, not to upset her, but to make it more an open part of her life.I hope it works! Abby knows her sisters know and I encourage her to let them help her with her hair everyday.I feel so much better not lying to her about who all knows.I should have been more open in the beginning instead of helping her to hide.I know where some of my faults are now and we as a family are going to fix them together.My sister works with a lady who has AU and she wants to meet with Abby.I think this will be a good thing.This lady has also told us about wiglets,this is something we are checking into.I know this is going to be a long hard processes ,but I don't think I would have thought about doing any of these thing's if it weren't for you sharing your experience's with me,I would have kept trying to help her hide.Thank you so much for everything. You and everyone else in this discussion seem to be so free of worries I hope Abby can be this free one day soon.
Tammy

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Permalink Reply by rj, Co-founder on July 25, 2008 at 3:09pm

Hi, Tammy. Is Abby receiving professional counseling? Given that you mentioned that she talks about wanting to kill herself, this is your first and foremost option. I have three daughters, one of whom has the appearance-altering skin disease called eczema, so I know how difficult it can be to help your child deal with self-esteem and self-image issues. Nonetheless, it takes matters to whole new levels of seriousness when any child harbors thoughts of suicide or wishes to inflict harm on herself. This warrants expert intervention as well as continued parental support and guidance. I know that you understand this, but I am curious to know whether you've acted on this yet.

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Permalink Reply by abby lawson on July 28, 2008 at 12:48pm

Hi,iAMrj.Yes we have taken her to see a counselor,but she would not speak to her she just sat there and cried.The counselor said she could not make Abby talk so there was not a whole lot she could do.She suggested we try reverse phsy on her and she was supposed to call me back.I had not heard anything from her so I called and she was on vacation so we are waiting for her to get back. I try someone knew but with the insurance we have you can only see certain people.We had great insurance until my accident in Jan.and I have been off work ever since and her father is disabled with PKD.So that leaves us at the mercy of this one doctor whom seems really nice ,but busy.I keep a very close eye on her and we make her stay close to us when she is upset she is not allowed to be alone anymore when she feels sad.Thanks Tammy

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Permalink Reply by Trina on July 28, 2008 at 12:55pm

Abby,

I am going to get a little more personal then i want to sometimes. I too felt like killing myself at her age. It is more the hormones of being a teenager along with this condition. I went to a pschiatrist and found that I did not want to tell her nothing. she understood nothing i was going through so who was she to tell me what i should feel. I mean I had some real lows for about the first year of dealing with this condition it is nothing like being 14 and losing your hair in a matter of months. While each person is different you love and support will help. I think sometimes we want to have a pity party instead of an uplifting party. Those feeling pass and I am probably the most upbeat person now. It is just hard to go through those emotions at a time when you are finding yourself. Keep faith and prayer and allow her to see others within her age group and a support group of others who are going through this helps.

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Permalink Reply by abby lawson on July 28, 2008 at 1:49pm

Trina,
I think pity is putting it right.I felt sorry for Abby and instead of helping her deal with this I think I helped her hide it.I am learning more each day and by reading these comments I am learning lots of new ways to deal with things and how to help Abby to deal.Thanks for being so open.

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Permalink Reply by Rose Marie' on July 25, 2008 at 4:13pm

Hi

You did ask if my daughter ever harboured thoughts of killing herself and I didn't really answer that as well as I should have. NO, never. She did have self doubt about how she looked but this was something very workable through the acceptance process.

I totally agree with RJ - if this is something that your daughter is saying you need to seek professional help. I'm sorry I didn't answer this question in particular as well as I should have.

Take care

Rosy

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Permalink Reply by Mandy on July 25, 2008 at 4:51pm

I agree with RJ as well. I can't believe I overlooked that before. Thoughts of suicide are far too serious to handle alone. I think professional counseling would be a must. Again I do think this won't meet that need for talking to those that have gone through it themselves though. So while I do agree that professional care is in order, I still think the support groups or phone support is a good idea as well.

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