Help for Parents

I think the most important thing to realize that it isn't your fault that your child has trichotillomania.  Please educate yourself as much as possible to be able to help your child.  Don't tell her to 'just stop' - she cannot!  Just support her and be there for here.  Give her unconditional acceptance, whether she pulls or not.

The hurt from people not understanding is usually much more than the hurt of the loss of eyebrows, lashes and hair.   (Amanda)   Please read the letters from Mike Grant below, as well as the others.

Another place to go:

Parents: Join an e-mail loop for parents of children and adolescents with
ttm. The loop is a private (at least as private as over 50 people can be!) way
for a group to share support, concerns, and information via simultaneous e-
mail to everyone on the loop. If you're interested, just e-mail
oceanmrc@aol.com for information on it.

Following is a letter by Mike Grant which I think is important for parents to read.

Christina put me in touch with a mom of a 13 year old daughter who has been pulling for approximately two years. Her daughter's situation is astonishingly similar to my own daughter in that she is pulls in clumps, has similar scalp problems such as the sores and picking, and therapeutic interventions to date have been unsuccessful. There are many other common issues as well such as peer rejection and secrecy about pulling. Like Terri, her daughter is gifted and excels academically. She describes her daughter as being a nice, sweet girl whom she adores. The mom tells me her daughter is trying to get on with her life and has decided to see a therapist on her own. From the mom's letter, I gathered that previous interventions were primarily medication oriented and the daughter did not like the way the medications made her feel.  The situation with her daughter's trichotillomania has been very trying and this mom feels very frustrated and despondent. Like so many other parents, she is concerned for her daughter's future if the trichotillomania continues. I get the feeling she feels very helpless and hopeless in that she is unable to control her daughter's pulling behavior. Understandably, and responsibly, she is now receiving professional care for herself in this regard.

This mom has decided to accept her daughter's trichotillomania. By this, she means resign to being powerless to help her daughter because she cannot control the pulling behavior and generally disengaging from the situation by simply ignoring the trichotillomania and no longer even discussing it with her daughter. Instead, she just vacuums up her daughter's hair around the house.

I have been where this mom is at right now and to me her feelings and actions are all too familiar. The emotional disengagement comes from the pain she is experiencing from what she sees as hopelessness and despair, just as I did. For me, the only solution was to stop the pulling and if that couldn't be done the situation was hopeless. If I couldn't stop the pulling with all the resources I could command such as the doctors, meds, and other therapeutic interventions then I was powerless when it came to helping my daughter. As I told this mom, my wife had terminal cancer and I cannot remember ever sinking to depths of despair that I did with my daughter's trichotillomania. Unlike the cancer, the heart wrenching thing about trichotillomania is the feeling there must be an answer somewhere and that all one has to do is just find it. When we can't, we blame ourselves.

Perhaps all parents have to go though this phase. Almost everything I know today, Christina told me the very first time I spoke with her.   Christina's words just didn't have any meaning to me at the time, not through any shortcoming on her part, but rather because I had not reach the point with Terri that I would come to know their meaning. I look back upon myself, oftentimes in anger, and wonder how I could have been so stupid. I realize now that I am still learning and evolving as parent of child with trichotillomania just as my daughter is doing as a young adult with this condition.

What I have learned so far, which I wanted so much to share with this mom, is to see the hope that is always there and to seek out ways to help, even if it doesn't save a single hair. I have come to know now what Christina told me in the beginning, which is trichotillomania has very little to do with hair and everything to do with who the person with the disorder is and how they feel about themselves. The mom may be absolute right in that she cannot control her daughter's pulling behavior. However, what I would like very much for her to see, is how many other ways she can help her daughter; things that could truly make a difference in her daughter's life and her sense of well-being. I cannot speak for those with trichotillomania because I do not have the disorder myself. However, I have come to know many who have this disorder who have shared their lives, hopes, and feelings with me. From this experience, I honestly believe most gladly would trade a full head of hair, must as they would prize it, for the unconditional love, acceptance, and support of their loved ones without hesitation.

What I would like this mom to understand most is acceptance is not passive and simply turning away from her daughter's trichotillomania nor resigning to what she perceives as the hopelessness of the situation. There is so much hope and so much she could do! For example, I know she cannot stop her daughter's pulling, much as she might want to. But it would mean so much to her daughter to be able to share her struggle with her mom and to have her mom there for her even if she pulls knowing her mom understands. I know only too well that a parent is powerless to control the interactions her daughter has with her peers and the hurt that can cause. But I have also seen that a parent can help a child deal with that hurt and maintain their self-esteem. Even to an adolescent, the most significant person in their life is still their parent(s). In order to help, however, the lines of communications must remain open about the trichotillomania and the parent and child must remain actively engaged with one another. True acceptance is indeed very active and positive which should never be confused with merely passive rejection and disengagement.

As difficult and contradictory as it may seem, the best way, in my opinion, for a parent to help their child with trichotillomania is to relinquish the goal of, and responsibility for, controlling the child's pulling behavior. W. Edwards Demming, father of modern quality control speaking on an entirely different subject, once noted that most of what we perceive of as control in our lives is merely self-delusion of our own importance and power. We can effect outcomes, he noted, but usually only through minor and thoughtful interventions that result in a process of continuous improvement. In fact, Demming loathed the term "quality control", which implied the goal was to control quality. He preferred simply to refer to his methods as the process of continuous improvement. Please forgive me, as the engineer in me is starting to show through. But his point seems to apply here as well.

To illustrate this point, the mom told me that bedtime was a bad time for pulling with her daughter, as it often was with my own daughter as well.  I had suggested some things which seemed to work for Terri which Christina had also recommended as well as a few of her own. Her daughter was very  receptive and appreciative at first, but soon came to reject her parents' help. I found this puzzling and inquired further to see what might have went awry. I asked what they did when her daughter felt she still needed to pull even with their intervention. Of course, they wouldn't let her and instead tried to gain control in the situation by interdicting the pull. Indeed, their actions may have saved a few hairs the first time or two, but at the expense of their daughter's rejection of their further interventions because such interventions came at too high a price. That is why when I talk about The Hug, I cannot stress enough never to make any attempt to interdict a pull and to as best as human possible mentally let go of the notion of trying to control the pulling the behavior. Instead, I urge them to concentrate on support and comforting. If a parent, or other loved one, cannot be there for the times the individual has to pull even with their loved one's best interventions, then the child will come to not welcome their efforts the many other times that such efforts would have made the difference. The support is always important and valuable, pull or no pull, and that's the goal, not controlling the pulling even though the pulling may indeed be reduced by such interventions. In defense of this wonderful mom, I have to say that one of the most emotionally painful moments in my life was holding my daughter the first several times during a pull. It felt like my heart was being torn out. But I don't think I could have truly accepted Terri's pulling any other way nor could I have gain the degree of trust she has in me now in that regard otherwise. I wish so much I could share with this mom and other parents what I have come to learn more with my heart than with my mind about trichotillomania. Such things are difficult to reduce to words.

One of the things that have help me so much as a parent is the sharing of those with this disorder. I do not feel as concerned with my daughter's future as I once did and it has given me the courage, insight, and support to help my daughter as best as I humanly know how. I only wish there was someway this mom could have the same opportunities and good fortune I have had in this regard.

Mike

This is a reply I recently send to concerned parent. I thought it might be of some general interest. Please feel free to share this with any parents who might be interested.  Message follows:

I am so glad to hear from you. Your words tell me the love and devotion you have for your child as well as the frustration you may be feeling right now. I would like to help if I can. I would like to begin by sharing with you some information about your child's condition, which I presume is trichotillomania. The best information we have suggests that ttm (trichotillomania) just happens for reasons we do not understand. Stress does not cause ttm. Stress can aggravate the condition, but stress tends to make just about any condition worse be it physical, mental, emotional, or spiritual. Trichotillomania is by no means unique in that regard. Because we do not understand what causes this disorder, there is no known cure at the present time. This is not to say the disorder is untreatable. Appropriate and adequate therapy can produce significant gains for many. Spontaneous remissions and relapses are quite common, again for reasons we do not understand. The condition tends to be chronic and the underlying factor remains with the individual throughout his or her lifetime. Trichotillomania is a complex disorder with the pulling behavior representing only a small portion of what individuals with this condition experience. Failure to appreciate this fact invariably leads to frustration and many other undesirable consequences not only for the individual who suffers from this disorder but for the significant others in his or her life as well.

One of the hardest thing for a person who does not have this condition to appreciate is that the overt pulling behavior is, for all intent and purposes, involuntary. We tend to view the actions and thoughts of others through our own experience. Our experience tells us that pulling our hair hurts and has a negative impact on our appearance. From this perspective, it is impossible for us to imagine why anyone would engage in such conduct.  More importantly, our instincts tell us the behavior must be voluntary for the individual with this disorder because the behavior is voluntary for *us*. Even a well- informed non-puller who intellectually understands the behavior is oftentimes beyond the sufferer's control may have difficulty appreciating the puller's experience on an emotional level because it lies outside his or her own experience. Parents, particularly, have a difficult time accepting the involuntary nature of their child's pulling. I personally do not know of a single parent that I have talked with who believes his or her child's pulling is deliberate. Many say they understand what their child is experiencing is not a matter of choice and I have no doubt of their sincerity nor of their love for their children.

However, good intentions may sometimes be misdirected when there is a not a clear course of action to be taken. Out of love and concern, the same parents who believe in their hearts the child's pulling behavior is involuntary will devise incentives and rewards for the child to control his or her pulling never realizing the inherent contradiction. I know this firsthand because I've done this exact thing myself as a parent. Incentives and rewards seek to influence an individual's voluntary behavior alone. If the behavior in question is involuntary, then incentives and rewards cannot influence such behavior. It would be like offering an epileptic child trips to the zoo for every week he or she didn't have a seizure. Obviously the child would feel unjustly treated for something beyond his or control. Such feelings would invariably lead to frustration not only for the child, but for the parent as well when the reward did not bring about the expected outcome. A child with trichotillomania is no different in that regard, nor is his or her parents.

There is a place for rewards and incentives. The important thing to remember is to target voluntary positive behaviors, not avoidance of negative involuntary ones. For example, an incentive plan based upon how many hairs were pulled or not pulled in a period of time would not be appropriate or productive in my opinion because pulling is oftentimes not voluntary in nature. Rewarding a child for such voluntary behaviors as taking his or her medications as prescribed, using hand toys, and cooperating with the therapist would be much more appropriate, productive, and less frustrating for all concerned while helping abate the pulling, though perhaps in a less direct manner. Such a program reinforces the child's confidence and self-esteem by providing goals which may be achieved through his or her efforts alone regards of circumstances beyond the child's control.

Take care and be well.

Mike

Until science proves otherwise, mothers do not cause trichotillomania.

mothers with trichotillomania do not cause it. mothers without trichotillomania don't either.

bad parenting is not the culprit. (conversely, unfortunately, good parenting won't cure it.)

people do not catch it from parents. people do not give it to themselves to punish their mom.

any mom who affirmatively sets out to force a child to systematically pull out her hair into adulthood, will most likely fail.

I'm not discounting the old nature/nurture combo, which suggest you need both components to get a trichster: nature, which is the neuro/physical/biochemical/whatever predisposition to it, (I. e. the body we're born with), and nurture - an environment conducive to bringing out the disorder, including triggers such as stress, trauma, and yes indeed, the ol' fall guy: a "bad" mom. it's one theory (of many) that at least seems potentially persuasive.

however, I want proof, one way or another that this is (or isn't) how it happens. until there's more study, my mother, who was not perfect, is innocent.

 if anyone wants to debate me on this, I'm game. come prepared with scientific evidence: I'll settle for one single instance where it was demonstrated that a mother gave her child trich, I don't care how. show me the genetics, the chemistry, the biology, the psychology, the physics, anything. but make it scientific.