Where acceptance is all there is!
My son has only been recently diagnosed with AU. It was quick too. in a few months he was completely hairless.
I know he is healthy and i thank god he is, but it breaks my heart knowing he is different, and he knows he's different. And after being upset about that i feel guilty that i should embrace his bald headed cuteness! I am not ashamed of him in any sense of the meaning i just fear for him, growing up in a smaller town, people are cruel and ignorant. I am mad at the world for dealing him this hand.
I hate that there is nothing I can do. Even a wig wouldn’t cut it... his hair feel out in a matter of months during the middle of the school year. The kids witnesses it happen It would obvious if he had a wig on, and in my option another reason to be teased, and harassed. He’s got no eye brows or eyelashes either and I think that’s what stress about the most.
Most times I am completely okay with it and it doesn’t bother me…. But when I think too much about it or start doing research I just get so stressed. Or worse when he starts feeling self-concerned I do for him. I always put on my happy mommy face and tell him and whoever will listen… that he is who he is …. Some people are blond some are brunettes…. And some are bald! Some people are black some are white some have freckles some don’t… we are who we are…and life would be boring if we all looked the same!
This is me just rambling on because I been looking at all the profiles and groups here. And as I take in more info…. I feel more stressed. But I am learning to deal I guess. He’s healthy and that’s all that matters!
I would love to hear from any parents In Ontario Canada, (north of Barrie would be awesome)
Comment
I realise it's difficult to see a child go through this, but you have to keep thinking positive things and as a bloke it's much easier to deal with than for girls. I got AU about 7 or 8 years ago and since then I've saved a fortune in shaving and hair care products - just think how much your son will save over his lifetime :-)
OK. Some might think I'm trivialising it by taking that attitude, but AU is really just part of who I am, it's me. When I'm asked on forms for medical conditions, I almost always forget to put down alopecia because it's not something that I treat as an ailment. My wife and daughter say that they can't remember me with hair, and you *will* feel the same way about your son, but that's not a bad thing, your son will go through many changes in his life, this one just happened over a timescale that was difficult to deal with.
And you've been through the most difficult bit - I hated the patches as it was all falling out; I hated shaving my head; I hated meeting people for the first time afterwards. (And I hated the people who got annoyed with me because it was "only" alopecia and they had wasted their emotions because they thought it was something more serious - yes it did happen, and more than once.)
But there are two things though that do make a difference with AU: 1 - My head is very susceptible to weather and I've acquired a good range of headwear to keep warm or cool! 2 - Sweat! I'm sorry to be so basic, but without eyebrows sweat drips in your eyes and it's horrible!
Oh, and as I told someone on FB the other day - I'm fairly proud to be over 50 and not have a grey hair on my head :-)
i took a long time to accept my son's AU. It's just so traumatic at first but the experience he will gain from this will shape him. It's amazing at how resilient kids are. my son is 10 and has been AU for 3 years. i was devastated for him for a long time, there are still days when i thing it's so unfair and i wish it were different, but most of the time it just is what it is. i felt guilty for feeling like my son was somehow "less than perfect" and i worried constantly about what kind of life he would have. i did'nt want people's pity and i felt paralyzed moving forward. biut acceptance is a wonderful thing. it frees you from giving a crap about what others think.
don't go online. going online is a killer as most of what you read makes you feel worse. i found a great woman (actually she found me on one of these sites) and she helped me understand that as a parent you grieve for your child,like a death. your mourn the the loss of the life you envisioned for him. but he will survive and have empathy that other kids his age can't begin to imagine. for that you will be proud. i also allowed myself (and still do) to grieve with my son. if he has a bad day and says "I wish i had hair" i say "i know you do, I'm sorry i can't make it better" or i will say "If i could, i would give you my hair". and he laughs and says he's much cuter bald than i would be (true). my son taught me that it's ok to admit sometimes that it sucks and we wish it were different. let your son guide you. he will help you understand what he needs and how to handle things. my son is a great athlete, he has no shortage of friends, he has girls who have crushes on him, and he can do every single thing his friends can do. no one treats him like he's pathetic becuase he doesn't act like he's pathetic. he's a regular kid who just doesn't have hair.
kids are incredible, it's the adults that create problems by staring, making rude comments, acting weird. your son will be fine, i promise you. this is much harder on you than it is on him. the more you see him thriving,the better you will feel.
Hi,
I think you have just expressed what many of us and many parents have experienced either going through alopecia ourselves or watching a loved one go through the process. No doubt it is hard and it hurts. I will tell you that there is an undercurrent of strength that comes from this disease that will take some time to surface. It may take going through some very tough experiences but in the end you and your son will be better at understanding pain in others and both will be stronger for it. I have a 10 year old client who is just entering junior high and has embraced her alopecia (AU). Her school has rallied behind her as has the town. She has male suitors, lots of girl and guy friends and helps others in the area with the same condition. She is a real hero (to me too). She just recently purchased a hairpiece (with the class and town's fundraising efforts) and everyone loves her. There is a group in Toronto called CANAAF which hosts several support groups in and around your area at different times of the year. Check them out on the website...this could be a fantastic contact for you both. There will be a silver lining...we just have to get through the dark greys to find it.
Well, most of my kin on one side are in Ontario...does that count for me to answer, even though I live far away? Anyway, I think strength comes in being proactive rather than in wringing hands, so why not help your son to join alopecia support groups, kids' camps, and teach his school and community about acceptance and the medical issues of alopecia? If he can DO (write, make cool video, create posters, pen songs or stories about alopecians), then he will get noticed in a way all the town can get behind and support. See www.naaf.org for support groups.
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