Replies to This Discussion

Permalink Reply by Maria Jeremiason _ Signe's Mom on April 7, 2010 at 7:04am

I understand.

Maria

Permalink Reply by Erica Gibson (Austin's mom) on April 7, 2010 at 9:46am

Everything that you wrote is exactly how I feel with my son. My son just recently played on a new basketball team. Before I had met the coach he had comunicated through email with everyone setting up practices and such. My son has played baseball and soccer with the same bunch of kids for so long, so being on a new team with new kids was a new thing for him. I did email his coach before the first practice to let him know about Austin's AA. He was very nice in his email back. I too had wished I didn't feel like I had to advocate for him in over something so simple. I just don't want someone to say something to him and it hurt his self esteme. For your friend telling you it could be so much worse, well yes it could, but there is still the- not actually understanding why the body is doing what it is doing. It's so hard not knowing how to fix it even if it's just hair. It brings tears to my eyes all of the time that I can't fix this thing for my son.

It is not horrible to wish that your son could be like everyone else. I think that almost everyone reading would have to agree! I would do anything for this to go away and my son have hair.

Permalink Reply by Gretchen on April 7, 2010 at 10:36am

Hi Sara,

I totally hear what you're saying. It IS hard! Sometimes you just don't want to have to go through the extra effort. And there's no choice about it--we ALWAYS have to do all we can to safeguard our kids as much as possible. We all wish our kids could just be like everyone else and that things could be easy and simple for them.

As far as your friend, I think that often other people would like to "fix" things for us because they have our best interests at hard and because it IS painful. In doing so, they inadvertently minimize the challenges. Maybe your friend could understand that while yes, of course it could be worse its also worth occasionally acknowledging the wish that it could be better. Sometimes everyone facing any kind of adversity needs others to simply appreciate the difficulty of the situation without trying to fix or change things that cannot be totally fixed. Maybe he could understand that?

Permalink Reply by Connie - Chris' Mom on April 7, 2010 at 11:44am

My son is 15 and has AU. Although, we too, are new to this I've realized that it probably won't get any easier, but that my son relies on me to be his advocate. He expects me to go before him and prepare the way so he doesn't have to deal with as much. As a mom it's a privilege to be able to do something for him to make this easier. I just wish I could do more. My family and friends try to "comfort" us and say "at least he's not a girl". I have to remind them that it's just as hard, if not harder, for boys, they can't hide it as easily as girls. My son would look silly with false eyelashes and penciled on eyebrows even if he convinced everyone that the bald look was "in". I've realized that people think they need to try and say something to comfort us and try to make us feel better. The ones who simply say "I'll keep you in my prayers" actually comfort the most. I also wished that he could be like everyone else, but I've come to realize that he isn't like everyone else, he is special. It may just be because of his lack of hair, but he now has a unique opportunity/burden to be remembered. He will stand out in a group, he will be the one people remember. I've challenged him to take advantage of that and also be remembered for the good he does, to make a positive impact on the world around him.

Connie

Permalink Reply by Maria Jeremiason _ Signe's Mom on April 7, 2010 at 12:00pm

That was beautifully said, Connie. Thank you.

Maria

Permalink Reply by BaldGirlsDoLunch.org on April 7, 2010 at 2:44pm

The teenagers I meet everywhere I go, both boys and girls with alopecia, are as a group outstanding people. Their parents have a right to be proud. Collectively they have way more than just a good head on their shoulders. Every parent can be thankful that there all these fine young men and young women of tomorrow that their children can look up to.

As every parent knows, we not only learn on the job and learn from our mistakes with kids, most of all we learn from our kids. They provide us with unconditional do-overs.


For the parents who are newer at this, just hang in there. It does get easier. But it really becomes nonchalant and easy and someday even a joy the more you do it openly and graciously when the kids are young. The kids both with and without alopecia are watching and taking notes. We have an obligation to become educators whether we ever wanted to take on that role or not. Be the gracious person you want your own children to become and it will feel easier more quickly.

Thea
follow the blog at baldgirlsdolunch.org

Permalink Reply by Sara and William on April 7, 2010 at 9:19pm

Thanks everyone. I guess I should be glad it went well. When we got new neighbors about 6 months ago, and someone managed to say something about Boo having Lice before I could get the intro part (you know how kids will be out in the lawn while people are busy), and then it went "hi....William doesn't have lice".... That really, really wasn't fun.... Whole house full of crying children, especially Boo.

Anyway, feeling much better today, thanks for all the support!!

--Sara

Permalink Reply by Jennifer M. Nielsen on April 8, 2010 at 3:25pm

Sara, I couldn't agree more with everything that you have said. My 3 1/2 year old son was diagnosised back in November and now he just has very thin, stringy hair in patches. We have decided to shave it as it looks better than having these thin patches. I feel that I always have to justify his hair, more like his lack of hair. I'm still pretty emotional about it. My husband thinks I'm crazy for being upset over it. He keeps telling me that we should be thankful that it isn't cancer. I know that but considering I'm with him the most out in public, I'm the one that has to deal with the sad/pity looks from strangers. How old is William?

This week, we were outside and our neighbor came to see us. I had a baby in January and he has more hair than Jack. :( Our neighbor was like Jack, I like your haircut. I wanted to say come on, why would we shave his head bald if we didn't have to. It's not even summer.

I'm hoping and praying that one day it's going to get easier to have to deal with everyone. He'll be entering K4 this fall and I'm going to have to talk to his teacher and the school. It's a small school so I pretty much want everyone to know what's going on. Does it get easier? Does anyone have any witty comments to make when people stare or make rude comments?

Permalink Reply by BaldGirlsDoLunch.org on April 8, 2010 at 3:52pm

Hi Jennifer,

If it's any consolation to help get through the early stages, you're reacting normally. It can be an emotional time for many months or up to a year for adults with a new diagnosis, too. Time does make a difference.

You've got the right idea about telling the school, friends and parents. It's important. The families I know who chose for whatever cultural or embarrassment reasons to not do this, faced unnecessary obstacles. The longer they kept the secret, the harder it became. Men and women who grew up in families like that too often became adults with self acceptance and interpersonal relationship problems.

There are a number of young men on this site on various discussions who have said over and over that secrecy was harmful while being open, no matter how it took to get there, was a relief and a life saver.

A nice way to educate the parents and school so they can process it their own way on their own time is to write a letter of introduction. Include pamphlets from the ChildrensAlopeciaProject.org as well. You'll do fine. It's just rocky in the beginning.

As far as your husband, if he can't "fix it", there's nothing to talk about. But, I see your role in that relationship as speaking up and just saying sweetly, "it's not unusual for parents or people with alopecia to feel this emotionally as a loss and react as if grieving." He need not respond to you to know that you've expressed how you're feeling which is essential. His way to cope is not your way neither in this nor in other situations. So take care of you, accept that his m.o. is not the same as yours and things will fall into place.

Thea
follow the blog at baldgirlsdolunch.org

Permalink Reply by Connie - Chris' Mom on April 8, 2010 at 4:20pm

My husband too, thinks that I make too much of it all and probably make things worse. He just doesn't see that most of what I do is in the background and is meant to protect our son from as much as possible. He thinks that our son just has to "suck it up" and "deal with it", after all, it's only hair. We've agreed to disagree.

I still remember the look in my then 14 year old son's eyes when he turned to me the first time someone asked about his hat. His hair had just started falling out and he chose to wear a black fedora. (He was quite handsome I might add.) We were working with about 30, 3-5 year olds. We had been with this same group of kids all year and this was the first time they'd seen my son in a hat. One of the kids asked him why he was wearing a hat. He looked over to me with a panicked look in his eyes. He didn't know what to say and sure didn't want to tell anyone that his hair was falling out. I just plainly told the boy that he was wearing a hat because it went with the jacket he was wearing. That was enough of an explanation and no one asked again. Then on the first day we were with the kids after we shaved his head, but was still wearing his signature fedora, I overheard one of the kids say "cool haircut" as he walked into the room. As a mom it makes you feel good after each encounter that goes well. You watch as your child gets more comfortable and soon notice that the panicked looks are less and less frequent. I think that's part of our job as mothers - to help ease our children into acceptance and to help them develop the skills they need to handle things on their own.

Connie

Permalink Reply by Sara and William on April 8, 2010 at 10:28pm

William (aka Boo, so don't be surprised by either moniker) is 8 1/2. He was first diagnosed a year and a half ago just before Thanksgiving, and it all fell out by new years. He's got patches now, which my mother thinks looks "worse than shaved" but my dad thought "nothing could be worse than how it looked before" (totally bald). They never say things while he's around, of course, but I always think if that's what his GRANDPARENTS think, what do strangers think??

It does get easier, I can say that now after a year and a half. But obviously it never gets completely routine.

We also had the neighbor from across the street yell "nice hairdo, William" when it was first falling out. That ended up being my first "yeah, he's allergic to his hair" conversation.

Thanks again!
--Sara

Permalink Reply by Ellie on April 9, 2010 at 5:28pm

My daughter is 5 or introductions go as follows. Hi, I am Haley's Mom. I then let the conversation flow in a normal way. Most people are curious and most will ask in a kind way. I do however let her teachers know before starting a new school. I will be sending a letter to the parents before school starts in the fall(we might be at a different school then) to let them know. I am also giving Haley the words so she can tell people. It has taken me a a while to be at this point. My Duaghter hasw no hair on her head so it is hard not to notice the only bald girl in the room. However We are doing very well with this and I hope that she never loses her outgoing personality.