Replies to This Discussion

Permalink Reply by Essence on July 30, 2009 at 1:28am

try going to his school and speaking with his guidance counselor or principal and ask them if they could get him some type of "peer mentor". it has to be someone mature enough to understand the condition and accept him with it.. i think once he has someone to talk to or hang out with he'll become more open minded about meeting others.

i was really shy during my first years of high school because of my alopecia and i was scared of what the other kids would think but having one girl come up to me and say "hi, my name is Maria" gave me the courage to meet more people. lol... all i needed was one person to accept me. hope i helped... =) good luck.


you can also try finding someone his age with alopecia in your area because that might help him or have him join this site so that he can see other people's stories and how they have handled living with alopecia.

Permalink Reply by Susan - Jon's Mum on July 30, 2009 at 8:03am

Thank-you for your suggestion- its a really good idea. We were going to speak to his year advisor about it so I will bring up your idea of a peer mentor.
He had some friends in primary school but they split and went to other high schools and the ones that he is going to school with now are acting irresponsibly and he is finding it harder to relate to them.
We live in a country town of about 18,000 people. I know of 2 other people with alopecia areata/totalis but they are men 30+ and I feel my son Jon would not be able to relate. You know how kids think that anyone over 20 is ancient and they don't know what it's like for kids these days? I have suggested talking to them in the past, it may be time to encourage it again.
He is in denial a bit. I have tried to encourage him to read the blogs on this site but he won't go anywhere near it.
Anyway, I thank you very much for your suggestions and your support. I hope you have a good day today!

Permalink Reply by Dominique Cleopatra on July 30, 2009 at 5:11am

Why not show your young man some confident, and successful members of alopecia world as shining examples of overcoming adversity such as Michael Powers: One of the early founders of YouTube where he still works on engagement programs (e.g. contests). He loves traveling, especially to places where there is great diving. His alopecia came along when he was 7, grew back at 12 and then fell out again when he was 18. "Just in time for boot camp!" He said, " It took years but I came to terms with how I look. Thankfully baldness is popular this decade for men." Here is an attractive, adventurous, and accomplished man who did not let this condition stop him from achieving his goals one bit. I am sure Michael has no problem finding friends or dates. If you introduce your son to some mentors like this in which to look up to, it could give him a world of hope and the realization that there is a lifetime of possibilities ahead of him. Always make sure that whatever obstacles he has to face out in the world that he has a safe haven of unconditional love and acceptance at home with his family. Try to encourage him to pursue activities that interest him where he can meet like minded friends and get his mind off his problems long enough to glimpse the light at the end of the tunnel. Best of Luck!

Permalink Reply by Susan - Jon's Mum on July 30, 2009 at 8:32am

Hi Dominique, you are absolutely right. My son Jon is very bright and has alot of natural ability in different areas and he recognises that most of the time. A mentor with Alopecia would be good. As we live in a country town of 18,000 people there are only 2 others I know of that have Alopecia and both are men over 30. Maybe it is time we got them together.
I endeavour to provide a loving family environment here. We forget that he has alopecia and only remember when we see other people's reactions on seeing him.
Your right, we encourage him to get involved with sport and other activities. He was attending a Tae Kwon Do class for a couple of years and was very good. He decided this year he didn't want to continue, though he would have been able to get his First Dan by the end of the year. We felt that was very good for his self esteem and gave him alot of self confidence. You can't make a child/nearly teenager do something they really don't want to do though.
He was into soccer and cricket as well though he hasn't got into soccer this year. We are hoping that he will return to cricket in the summer.
Thankyou for your support and your words of wisdom. Very much appreciated!

Permalink Reply by paul williams on November 6, 2009 at 10:50pm

hi how are u my name is Paul and i have had this since 23 im now 35 i could just imagine how your son feels being so young and he must be in school when i first got it at 23 i didnt know what to do i was in the bathroom and just brushed my hair and clumps of it came out i had already 3 kids all girls but i was scared and it made me feel like i was a discusting person when i lost my hair i out on a hat that hat didn't come off until just about 4 months ago i noticed my hair had came in i still had a few small spots but not noticeable i have had my hair cut 2 times since then and now dont have any missing but i can just inmagine what your son is going thru it had to be way harder for a child and a girl then a grown adult because i know for me it was harder then hell excuse my words but it was now is the time to watch your son if he is feeling the way he is because alot of times u can get very depressed and not want to deal with it if u know what i men u know he needs alot of people to talk to him because i didn't have no one i was laughed at people didn't understand what it was i had to explain and it was not fun this is why i kept it covered for so many years a few times i shaved my head bald and tryed to go in public but i was still not good with myself it was just tearing me up i found some poeple excepting and others just laughing i would like to chat with your son i want to meet people with this just so im prepared in case my daughters ever get it witch i hope not i would cry i think i got it from my grandma cause my mom told me she had it when she was younger i do believe though to that stress had something to do with it please email me so we can talk

Permalink Reply by Rose Marie' on July 30, 2009 at 6:31pm

Hi

I'm so sorry your son is feeling so bad at the moment. Don't give up keep looking for the things that help him move past this condition. The choice to opt out of life is not something you or him should be entertaining so alternatives have to be found with is absolute involvement.

He has alopecia - something that can't really be changed. He needs help with strategies on how to cope with it. It sounds as if high school is terribly painful for him with his changed appearance. Counselling, school support and constant support from his family will get him back on track. (Remember some counsellors are better than others). Keep doing the stuff that helps, talk to him find out how he wants to handle this. (I know his answer at the moment is to stay at home) which you know is alternative that spirals to nowhere. There is no choice but to find alternatives that work for him, with his help.

My daughter lost her hair at 12 also, I understand that this is hard, but the alternative is worse. Keep going.

Rosy

Permalink Reply by Susan - Jon's Mum on August 1, 2009 at 10:32pm

Hi Rose Marie,
Thanks for the support. I understand what you are saying. We are trying to teach all four of our children, not only Jon, that you have to face your fears and front up to things even if you don't won't to face them.
We spent some time trying to find out what is wrong and have since left him to calm down and think things through for himself. I had a nice day with him yesterday and the rest of the family went off to work or travel so I spent the day with him. Talking, doing things together and listening.
He said that he is ready to go back to school. I get the impression from what he said that there wasn't anything in particular that happened, he just didn't feel comfortable facing people. We will see how he goes over the next week. If we feel that it's needed I will get him into counselling and speak to his year advisor about what the school can do. Even though couselling hasn't helped much at other times after reading your comment I feel that yes we have to keep trying.
So that you for your concern and help.

Permalink Reply by Susan - Jon's Mum on August 1, 2009 at 10:52pm

Hi Susan,
Thank you for your advice.
After reading your comment (sorry took me some time to reply to it) we left Jon to calm down and allow him to think things through. Yesterday I had a good day with him just the two of us. The rest of the family went to work or travelled away for the day. We had a nice day doing things together and talking and listening.
He said that nothing happened at school in particular. I feel that it is because he was uncomfortable in himself and I believe that he just needs to come to terms with that-again.
Yes I don't really know what he is going through. Though I do remember being a teenager myself and I do have three other children 17, 20 & 21. I know that most teenagers and many adults do have 'hang-ups' and they can be tough to come to terms with let alone having alopecia.
So we are taking a small step back and have put the ball in his court so to speak and will monitor him. If we feel he needs it we will take him to a counsellor. Have had some recommendations. The school has been very supportive so far for all our children so we will also speak to them about what they can do to help the situation - even if it means allowing him to work at home for a while.
Thankyou again for your support.

Permalink Reply by Joshua on July 31, 2009 at 5:43am

Hi Susan,

I've read through all the wonderful posts and replies for this disussion. First of all, I need to know if the school is doing anything "detrimental" to your son's well-being, or does the learning institution (High school) is doing what it should to provide a conducive environment for all students regardless of backgrounds and condition to the children. (Let me know if the school is being biased or neglecting in any treatment towards your son, and my letter to the principal and district officer will be on the next plane)

Second. Your son needs to tell someone what possibly could have happened in school that might have embarrassed him terribly or even being called names in the public (especially in front of girls).

I always try to "tackle" particular issues along with the bigger picture which is coping with alopecia is school and the public. Coping with alopecia at high school is often a very "awful" journey as one hit a very high level of self consciousness and seeking acceptance from peers are among the those occupy a teenage mind the most.

I may be “ancient” to your son, some of my friends even believed that I am from the “ice age”!!!. I may not be 100% able to relate to Jon’s situation but I was once his age, I am not born as 24 year old to begin with.

I believe that your actions and concern so far are valid and supportive. You’re doing everything you can. Do not force your son into something that he is not ready yet or he doesn’t want to, for instance to read blogs and makes friends on Alopecia World. Just let him know that he is not alone and there are avenues on the internet like Alopecia World where he can vent his frustration. Your job is to make sure he is aware of it that’s all. (You don’t have to deliberately leave the computer on with Alopecia World on the screen when you’re away from the computer and he is around- actions like this may provoke the bitter feeling that is already in him)

As for a few people (30+) from your town that have alopecia, maintain a constant contact with them. (You don’t have to purposely to invite them over for dinner, as your son may think that you’re choosing friends for him…this is among a teenage mind most detest about)

My suggestion is to throw a “summer BBQ party”, invite a few neighbours and/or relatives that Jon is very comfortable with, then ask Jon to invite his friends over as well. (Let him feel that he is respected for his choice). Instead of start making friends for Jon, start making friends with Jon’s friends. It doesn’t necessarily mean that you’re “spying” on Jon through his friends but at least Jon knows that you’re comfortable with his friends.

I personally believe that everyone has their own individual avenue of sharing or venting their problems to others. My concern would be when one start coping and facing the problem him/herself alone, likely a prelude to poor choices (depression, anti-social, bad influence, smoking, alcohol...etc.)

Don’t freak out on what I have just said, just continue to be yourself as a parent to continue to love Jon as himself, not because of his alopecia. A warm loving family environment that respects his choice and embraces his friends while supporting him through prayers, faith and in action.

Remember it is a tough long journey ahead, but do not be wary Susan. God has allowed alopecia on us to provide an opportunity for us that will bring the best out of us. I am updating my blog about a family that I know personally, who is battling colon cancer for the past 18 months, please do pray for him and his family too. I should be done with the blog by the time you read here. Take care, Susan. Thank you for sharing concern with all of us here and do keep us updated on Jon’s situation.

God bless

Joshua
http://joshuablogspace.blogspot.com

Permalink Reply by Susan - Jon's Mum on August 1, 2009 at 11:12pm

Hi Joshua,
Thank you for your reply.
As far as I can tell the school isn't doing anything 'detrimental'. A teacher did ask him to take his hat off last week when usually the teachers leave it up to him. This was a new teacher and obviously wasn't made aware of Jon's situation.
Yesterday I had a nice day with Jon, just the two of us as the rest of the family went to work or travelled away for the day. We have a good time sharing, talking and listening. From what I can gather nothing in particular happened. I think he just felt uncomfortable in himself because he had decided to shave his head (he did have some hair on his head prior to shaving) and he wasn't comfortable about facing people. I know he said the day before going to school "Oh I have to go to school bald". I don't know whether he thought his hair would grow but I think he wasn't happy after having it shaved off.
As far as the girls - he did get asked to go out with one earlier in the year. His reaction was no way (just said no thanks to her though.)
He is in a big group of boys at school during break times. He says that they do silly things and that alot of them have not grown up and act like they are still in primary school. I asked him if he joins in and he said sometimes. I asked whether they pay him out if he doesn't join in he say they don't they just let him be and he stands there and watches them.
I know having 3 older siblings is probably hard for him in the way that he is more mature. His brother is 17 and two sisters 20 & 21.
As far as friends go he has them at school and some around our housing estate but he spends most of his time with his brother after school. I have told him about Alopecia world but he is not ready to join in and I wouldn't think of forcing him to do so.
I believe that Jon having alopecia and the ups and downs that he has had with it has made our whole family stronger, more tolerant of others and more sensitive to others needs. As they say God does things for a reason.
As far as your friend battling colon cancer - we will pray for him and his family. I believe in the power of pray
as I have been witness to a few miracles and believe that they came about through pray and a pray network.
Thank you for your support, it is very much appreciated.

Permalink Reply by Blessed Soul on July 31, 2009 at 11:58am

Wen I was 12 & got AU, i also refused to go to school. My parents encouraged me & told me to be brave & strong. They said God wants to c how strong I am since I am his special child. They also took me to a blind cshool & showed how enthusiastic these blind kids r to go to school everyday! They have never seen the world but r enjoying its happiness & beauty by feeling it. The real happiness always comes from heart. They were also playing Cricket & Football!!! They knew where the ball is by hearing the metal balls inside the big plastic ball!!! Then I thought how fortunate am I. I can c, I have hands & legs, My mind is sound....so I am a normal person. The next day I started going to school regularly!

Permalink Reply by Susan - Jon's Mum on August 1, 2009 at 11:17pm

Hi Priya,
Thank you for sharing. Your parents sound wonderful. I congratulate you on being strong and having a good attitude from such a young age.
God Bless You.

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