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Permalink Reply by Susan - Jon's Mum on November 17, 2009 at 5:29pm

Hi Anthony
I have a 13 year old son with Alopecia Totalis. He first got Alopecia when he was 6. When he first got it he didn't deal with it very well. He refused to go to school. We got him into therapy - a pyschologist and a sand play therapist. I think at that age the sand play therapist worked the best. He went back to school and seemed to be dealing with it. Not wearing a hat or anything.
Now 13 in his first year of high school he lost what little hair he had in July. He started wearing a beanie out and again refused to go to school. He still is not in school and refuses to see a counsellor. He says that no one was bothering him at school but a teacher did ask him to take his hat off at the full school assembly. Even though we had an agreement with the school that he could wear a hat all the time if he felt he needed to. The teacher must have forgotten as Jon had not bothered with a hat previously.
It is a very hard age at the best of times as children, boys or girls, are very insecure and finding their place in their world. Appearance is a very important part of that. Lots of love and support and showing that you are accepting of him no matter what he looks like or how he acts is important. And please - don't blame yourself. That will only make things harder all around. This is an auto-immune disease. Stress can bring it on i think but at some point it was bound to come on.
I really feel for you cos i know exactly how you feel. My son has not been able to bring himself to talk about the issues that are worrying him. He is just starting to open up now. Slowly slowly. Please make sure that you keep the communication going with your son. Keep him talking to you, make sure he feels comfortable about talking to you about anything. Encourage his friendships - these will help him get through. Make sure he has plenty of contact with his friends. My son isolated himself and we hadn't realised it was happening until too late. Something to watch out for.
I am here for you if you want to communicate. Take care. Think positive. (Sorry i rambled a bit - hope i made sense. It is a very emotional topic here at the moment)
Susan

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Permalink Reply by Rose Marie' on November 17, 2009 at 6:10pm

Hi

My daughter lost her hair when she was 12, she is now coming up 19. It has been a heck of a ride through these years. Not only a teenager, but a teenager with a condition that changes the way they are able to present themselves to the world.

I totally support all of what Susan has written, especially the need to keep the communications lines open. I know in my daughter's case there were times where this in itself was difficult as teenagers want to separate from parents and become independent. So, a balancing act and communication are the only way through.

I would encourage school, friends and sociability. All these things help with creating a well rounded young person. This condition is very challenging for the person dealing with it and those that love them, but it can be managed with everyone feeling comfortable and secure with their decisions. There is no right or wrong way to do this, but just the way that suits you, your son and family the best.

My daughter excelled through high school, travelled the world singing during those years, formed extremely caring and close friendships. She is now studying at University and doing very well. This condition does not have to have an adverse effect on your child, but it does take constant nurturing, support and education to get through.

If I can ever be of any help, just pop in and say hi.

Rosy

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Permalink Reply by Anthony seaborn on November 18, 2009 at 12:55am

Thank you very much.I felt so alone but im learning otherwise now.

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Permalink Reply by BaldGirlsDoLunch.org on November 17, 2009 at 7:34pm

Hi Anthony,

One of the hardest feelings is wanting to fix things for our kids and having a situation where despite our best efforts we can't fix it directly. Feeling guilty is normal and it does dissipate over time.

My children don't have alopecia, I do, but I found the talking strategies in this now classic book to guide me through just about every situation I ever came across with my children and step child and even husband. "How to Talk so Kids Will Listen and Listen so Kids will Talk" by Faber and Mazlish. I'm sure that if my children did have alopecia that the methods I learned from F and M would have put me in a good position to strengthen them as individuals as well as strengthen our family team living with childhood alopecia.

Thea
www.baldgirlsdolunch.org

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Permalink Reply by Anthony seaborn on November 18, 2009 at 12:56am

Thank you and we will take your advice.

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Permalink Reply by JeffreySF on November 17, 2009 at 8:28pm

Hi Anthony,
Talk with other parents here and visit www.childrensalopeciaproject.org also www.naaf.org for more support and info.

Jeffrey

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Permalink Reply by Anthony seaborn on November 18, 2009 at 12:57am

Thank you for the response.I really appreciate it.

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Permalink Reply by Blessed Soul on November 18, 2009 at 10:19am

HI Anthony,
Dont worry, I can understand as I have been throu this stage when I was 13 with alopecia. Its hard to move among friends & classmate. I definately agree with it. What I used to do was get positive attitude. Best way to react to a situation is not to react. So if anyone passes comments, learn to ignore them. Coz if u react then it can be worse on u. Also, if someone tries to tease u by touching or hitting then its obvious u need to do it back or let elders know about it whether teacher or parents. Also, let his teachers know that take special care of him & instruct the kids not to tease him or anything. If they do they will be punished. Thats what my parents told the teacher & she instructed the same in the class. So, no one ever dared to tease me in front of me. Though i am sure they did behind my back, but at least not in front of me.

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Permalink Reply by Alex on November 18, 2009 at 9:17pm

I've had AA since I was 4, and I am now 18. I remember going through some rough times when I was around his age, and I still go through some rough times every once in a while. Unfortunately, it's just something we have to deal with. I can remember my parents also feeling guilty, but you just have to realize that it isn't anyone's fault. I can also say that I learned and acted the way that they did. My mom was huge on self-esteem and self-confidence for me. That is really what helped me cope and get through that rough stage of my life. If you act optimistic and show him that it isn't as important as it seems, he will catch on and start believing the same. I don't think it's something that can be done overnight, but just constant reinforcement that I am beautiful (or handsome in his case if he prefers) no matter what. Hair is hair and I think it just need to be put into perspective. Having said that, it also can be a huge deal since so much emphasis is placed on superficial qualities in this country. I found it very helpful to talk to others my age with Alopecia. Just talking to someone that's going through the same thing is comforting. Knowing you aren't alone can really do wonders. I don't know if you have or not, but if you are able to the NAAF conventions are held once a year at the end of June. They are AMAZING for kids and teens and their parents (and everyone with Alopecia). For once, you are around everyone that is exactly like you. Everyone has the same issues and everyone has something they are having a problem with. For once, you aren't the only bald person in the room. There are many and you can truly realize there that you aren't alone. I hope that this could help you and feel free to comment or message me to pick my brain if you would like. Good luck and I know he will be fine!

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