Comment by Tallgirl on July 24, 2012 at 7:53pm

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.

Comment by Jennifer Krahn on July 25, 2012 at 9:19am

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.

Comment by RonaldStone on July 25, 2012 at 10:37pm

Don't stress too much, I find its contagious. Plus I'm sure he wouldn't want to be a cause of stress to you. Just help him understand, you sound very cool.

Comment by kmunro on July 27, 2012 at 1:49am

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.

Comment by P8MTY on July 27, 2012 at 5:14am

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 :-)

Comment by Jorja Porja on July 27, 2012 at 5:32am

Hi there, your thoughts and feelings are very normal for a parent of a child going through alopecia. I think we take it harder than the children themselves because we fret about all the bad that may come out of it (e.g bullying and ignorance) we want to protect our children from the evils in the world. When their hair falls out it's like a visual bulleton board advertising they are differet. We as parents feel powerless when our alopecia child is out in the big wide world on their own and we're not there to protect them. My daughter was only 5 and a half when her hair fell out and I thank God everyday that she was so young and inocent that she didn't know all that I knew. She is now 7 and half and her hair is mostly grown back. My main fear now is for the future in the event she experiences stress in her life that it will reocurr. Fingers crossed. Kia Kaha (Be strong) Cheers Carolyn, Lower Hutt, New Zealand.

Comment by Shannon on July 27, 2012 at 6:30am

Hi. It wasn't clear to me how old Jordan is, so I'm not sure about his school experiences, but that might be a place to start. Our school board studied a book (through multiple school sites) called Destiny's Purpose. We used it in grades 1-8. Limestone board has done work with the book this year. It has a free teacher's guide and works really well for character development in a school around accepting differences (especially alopecia). I'm a special ed teacher and I wrote the book when I wanted to share my hair loss (at 42 - surprise, surprise) with the school I work in. It has won the Public Education Award from the Canadian Dermatology Association, and it has been a real support for schools with children suffering from alopecia. If you send me a private email with your address, I'd love to send a copy to your son. It could just be something to share and read between the family, or when he's ready he could take it to school and his class could do a book study. As well our school made a video last year reaching out to the children at the NAAF conference, made them buttons with messages of hope and sent a gift to the conference. I have gone to classrooms as an author to discuss the book and alopecia. I do the character work in our school, and it is possible to change the climate and the character of a school through one child or one book! I'm heading out as we speak for a weekend get away with my family, but I'd love to hear from you and send out a book. I'm in Ontario, too. Here's our website for more info: www.ballintotasalpacas.com . Take care!

Comment by linda carraway on July 27, 2012 at 6:52am

I wish I had a mother like you when I was a kid! My parents never even talked to me about it except to tell me oh your going to a Dr that's going to put you in a room and shoot radiation at your head!(45yrs ago) . You'll be surprised how wonderful people in your neighborhood can be. All theses people have wonderful advice and their life experiences are incredible. You'll do just fine " ALL YOU NEED IS LOVE" and you've got plenty to give. I just shaved at 51 and I have never felt so free! No more hiding ,it was awful growing up with no support I wish I would have done it yrs ago. I live in a small town and everyone has been great,they asked I tell and they go on with life just like me! Blessings Linda

Comment by Kathie Nietenhoefer on July 27, 2012 at 7:18am

I completely agree with Linda! My mom did everything she could to try to pretend there was nothing wrong, made tons of promises of making everything with me right, and ultimately put me into a wig from KMart and pretended some more. I was born with Alopecia (not sure what type exactly though - my eyebrows and lashes are very sparse and I have *some* hair but it too is very sparse, short and thin). After trying to be "right" for my mother for several years, it took visiting my father in Colorado and being accepted and loved for who I AM to make me realize that I can live with alopecia - out in the open and still be treated normally. I'm now 43 and tried the wig route for working one more time just to see if it makes a difference - it doesn't. Linda definitely said what want to tell you - love your boy as he is. You and he both sound awesome and others will see that in time. If you need some inspiration to see how well everything can work out, I found this website that shows famous people with alopecia: http://www.headzup.org.uk/alopecia_stars.aspx
The site is geared specifically to teens with alopecia and their parents. I really wish I'd had something like that to look at when I was a kid. Good Luck and God Bless both you and Jordan!

Comment by Jordan's Mom on July 27, 2012 at 10:44am

Thank you all for your kind words... I needed to rant about this all with people who understand.
My son is 7, his hair started to fall out days before his seventh birthday.

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