How to help our kids

Dear Mums - we are the support team for our children with Trich. here is some ideas that I tried.

one - POSters - everywhere in dangers spots. on mirrors - let the kids design there own BEWARE signs - I tried to make positive ones - eg - to choose ANOTHER activity rather than pulling. i put them in prominant places - perhaps they could try an activity that will use energy. A lot of you might have noticed the danger time after school - I tried structuring our routine so that I had time free around then so go for a walk with my daughter - perhaps if you live close to a school you could walk to meet them or the bus - using up that energy deinitely helped my daughter a bit - . Any lengthy period of times alone ? - my dau used to shut herself away in the room after school - so I started walking and talking with her to her room about her day and them encouraged her to come up to the kitchen and we would talk about other things. Then I would try to have an activity ready - a walk - or some help in the kitchen - cooking - peeling potatoes, preparing meals - decorations etc. all to keep hands busy. Oil on the hair might be able to help - and if they want to watch telly or read - how about some gloves to help them remind themselves. If they get embarrassed because friends might be coming around - how about a thimble or a bandaid or a special worry ring ??? I would try to remind my dau and it often came to a head on - so I would just try to be calm and point out that I was trying to help. sometimes that takes the steam out of things. Swimming, bikeriding - if the kids are old enough - let them ride to the grocery store after school to get you some items for the cupboards - even if you don't need the, !!  Volounteer groups - to occupy their time - organized sport or creative classes. Tapestries, knitting, crochet - anything to keep the hands busy -jigsaws, coloring, painting. Its hard for the kids to take full responsibilty for their actions and they do need their help. NO critiscism helped with us - and gentle reminders [ even when we are really frustrated.   For littler ones - rewards - we had calanders with a star on it forevery day not pulled and a reward of their choosing when they reached an agreed amount of stars - probably not too much to start of with. I was never really keen on this as I felt it focused attention on the problem rather than it being an assistance. Perhaps you can buy them books on self esteem improvement and good health books - include them in decision making about food purchase and what contents are in food.the best gift I gave my daughter was the control to run her life, and I was just the support team. I feel that prior to that I was doing the running of things and that does cause some resentment

Also see the section 'Parents support group' for a great piece on parents and children with trich, very applicable to other loved-ones too.

Another great piece at 'Support group for youngsters' - a letter to a trich-child

My parents mostly ignored my trich. Denial is big in my family. But they did criticize the hair-do's I came up with to hide the balding areas and criticize the fake lashes I wore to hide my bald eyes and criticize how "over-plucked" my brows were. This went on and on for years. Then I got engaged to be married. My mother and father decided that since I was 98% bald, that I needed a wig. If I agreed to a wig, they would pay for the wedding. If I continued to "humiliate" myself by looking how I wanted to look and not caring, then I would be on my own for the wedding. Needless to say, I got a wig, and still wear one 8 years later now. I am now unusually dependant upon my wig and feel handicapped by it. Before, everyone knew I was bald and just dealt/not dealt with it. Now, I avoid hairdressers, windy days, salons, swimming, conversations about looks/hair, etc. My point is that I know my parents were just frustrated and thought that if they just made me feel ugly/weird I would "shape up". I think it has made it worse all these years. I hardly speak with them and when I do I avoid topics of looks/hair. I am NOT saying that you have or will be as cruel as my parents were, I just wanted to share the misguided "tough love" that was bestowed on me. Please just love them and make them feel BEAUTIFUL! Yes, we all want to get through the trich and want to be "normal". We hate being looked at strangely and children are/can be especially cruel to other kids. I know you must all really care about your kids and seem ready to take this monster head on, hence a good reason to be on this bb.

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I would tell your girl why she pulls her hair. she should know right away it's not her fault, that you found out that there are so many people who do the same thing and she's not the only one. tell her with help we're getting better every day about not pulling. i would even read to her stories from this BB, the good stories about people who are learning to do other things with their hands when they feel like pulling, and learning to talk about it with their family so everyone can help. (i also think it's probably not a good idea to let trich dictate her wardrobe. 4-year old girls know what they like and if she wants to wear dresses there's no reason she should not be able to do as the other girls do. the hair-and-gender issues are a big part of the heartbreaking reality of trich for girls. if she's less bothered by people when she wearing jeans, and wants to wear them, it should be a matter of her comfort and choice. if anyone asks, no, she doesn't have leukemia and no, she's not a boy, either.)

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To parents of trichsters...My heart goes out to you...You have been put in a very difficult situation, and there is no simple solution. However, by coming here (bb) and seeking help for your child, you have already taken the first step. This will not be an easy task, and there really is no "right" way to go about dealing with it. There are, however, some things you may want to avoid, that may make things somewhat easier...First...Don't ever blame yourself for your child having this infliction. It isn't your fault, as there is no cause of trich, it is just something people are born with, the same as any other disease. Trich has often been compared to such things as diabetes, a disease that no one caused, but one that still must be dealt with. Just know that nothing you did caused this to happen...Also...don't blame your child for having this either...for all the same reasons. Some parents...mine for example...felt as though I was trying to get attention, when in fact, most of the time I was actually unaware that I was even pulling. I didn't want to do it, nobody wants to do it...it just happens, it's all part of the disease. And it is important that your child knows that he or she did not cause it either, because the earlier they can learn and accept this, the earlier they will be able to effectively deal with it. Another thing...don't punish your child for pulling. This will only increase their stress and anxiety, and probably lead to more pulling. I know you feel as if youmust do something, anything to stop this, but this is not the right approach...Agian, take my parents for example...they would punishe me in all sorts of harsh and cruel ways to try and deter me from pulling, and the only result was that my pulling increased dramitically, the difference being that I made sure to do it in private. This board has taught me so much, but most importantly that the best cure for this disease is love, understanding, acceptance, and patience. All of which can be found in ample quantities right here!! This wil help raise your childs self esteem, and it is also crucial that they know they are not alone. The feeling of isolation associated with this disease can often be overwhelming, and the simple fact of knowing there are others like you can help so much.  Of course, since your child is so young...this may have to wait, but just for future reference!! :O) I don't know if I have helped at all, but I hope so.

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Try alot of love, hugs, and learn to accept her unconditionally. If you are worried about what others will think and say, offer protection to her and offer simple truthful explantions to others. We went to Jacob's school and talked to each room of 4th graders and explained Aspergers(which Jacob has) and trich the kids asked a lot of questions many like Why I had to answer "I don't know" we let them know that this was something he does and that he really wants to stop but can't seem to help it. A lot of the picking and teasing stopped(their will always be hateful people out there) and he seemed to do better. You mentioned getting sympathy from those who think your daughter has cancer-- Jacob's head was shaved for the first time right before Mardi Gras(we live in Louisiana)- we attended a parade and a parade party- before the parade started my husband took Jacob around all the floats as the riders were loading all their throws(mostly junk but people go crazy for it). Jacob came back with more stuff than he could carry- many asked if Jacob was having chemo or radiation-Scott just smiled and didn't answer- Jacob realized why he got so much stuff  when he got back to the party- he has decided to shave his head for Mardi Gras next year- I guess he feels if trich got him he might as well get what he can from trich. I've learned that people accept it better if I act like it doesn't bother me. It's hard at times to smile and say well that's just Jacob, but I save my tears for private or those people who are not as judgemental. Please feel free to email if you'd like to talk. Also' please read all posts. I've learned so much. Xxxx can't verbalize his feeling to me but through the BB I 've gained a better understanding.