Friday, April 30, 2010

Parenting a Child with Trich

I got this book from Amazon, Stay Out of My Hair: Parenting Your Child with Trichotillomania. It's a quick read; I read it in two evenings. And I found it to be extremely eye-opening.

The book explains, in very simple terms, what is known about trich and what is not. And largely, the causes are unknown. Most of the research has been done on adults with trichotillomania; relatively little is known about how and why it starts in children - especially very young children - how it progresses, and what the long-term prognosis is.

I was apparently right in my assumption that it is not in any way related to self-mutilation, which is typically brought on by trauma and used to create physical pain in order to obliterate emotional pain; and that it is closely related to other habits such as nail-biting. To some degree, it is true what I've concluded - that in the end, Annabelle is going to have to own her hair-pulling. However, she is a little girl, and as her parent, I have a responsibility to help her navigate this because she can't do it alone. And unfortunately it's foolish to assume that she might grow into an adult with trich who is perfectly happy and well-adjusted. She might, but it's just as likely that if she doesn't master some strategies to control the impulse to pull, she might grow into an adult with trich who has resulting depression, shame, embarrassment, and self-esteem issues.

What became clear as I read it is that (a) my approach and reaction to Annabelle's hair-pulling has been all wrong, and (b) my approach and reaction to Annabelle's hair-pulling has been very typical of parents of children with trich.

The book presents a number of case studies, and Annabelle's hair-pulling matched one of them very closely: a little girl who, as a toddler, began twirling her hair as she sucked her thumb. Eventually, the twirling progressed to pulling, but it was more a result of over-zealous twirling, and not necessarily purposeful pulling. However, over time it became an ingrained habit, and the little girl continued to pull her hair in combination with thumb-sucking as a self-soothing mechanism, as when going to sleep, and out of boredom. This is Annabelle exactly. I truly believe that her pulling is not anxiety- or stress-related, but rather what has become a habit originally born out of hair-twirling, that she is largely unconscious of when doing it, and one she engages in as a self-soothing tool (in combination with finger-sucking) to go to sleep and during times when she's bored or idle.

The common responses of parents to their child's hair-pulling, according to this book, are:
  • Impatience (as in wanting/expecting the child to just stop the habit NOW)
  • Blaming (as in assuming the pulling is completely within the child's control and that they should just therefore stop doing it)
  • Policing (as in inspecting the child's hair regularly to monitor hair loss/hair growth)
  • Too much focus on hair/trich (as in allowing the child's hair-pulling to become the focus of the majority of interactions with the child rather than devoting attention to other issues, as well as all of the child's attributes, talents, and achievements)
I've had all of these responses to Annabelle. And it's all harmful to the child and to the relationship between parent and child. These responses cultivate feelings of shame and low self-esteem in the child, as well as making the child feel responsible for the parent's emotions and reactions.

I'm ashamed that I've done this to my daughter.

And when the book explains how many bad habits many, many people develop, and how difficult they are to overcome, I realized, maybe for the first time, that Annabelle's hair-pulling is not something she can just stop doing, just like that. When I think about all the times I tried to quit smoking . . . ack. Many times before I finally succeeded. And just like smoking, or overeating, or any other habit that a person has engaged in for long enough that it's become ingrained in their daily routine, they can't and won't stop until they're ready to. Which means that just because I'm ready for Annabelle to stop pulling her hair (and sucking her fingers) doesn't mean she's ready to, and I can't just demand that she be ready.

The truth is that I often find myself feeling embarrassed about Annabelle's hair. And because she's a twin, and her twin has long hair, I'm often asked why Annabelle has short hair (because, I guess, people assume that twins should look the same). I hate it when people ask me this, and I don't know how to answer. I find myself just being honest and saying that she has a hair-pulling habit (partly in the hopes of de-stigmatizing it), and that I have to cut it regularly to even it out. I don't know if this is how I should be handling it. I do know that it's probably not my place to feel embarrassed by her hair; at this age, she couldn't care less about how her hair looks. So why do I? Am I so shallow that I see my kid as a reflection of me? Yeah, probably something like that.

What I can do is commit to be gentle with her; no more snapping at her to leave her hair alone, no more reprimanding her for twirling or pulling, or demanding that she just stop it. I can be patient, and remind myself that habits are often very difficult to break, and it doesn't happen overnight; she may not even really be ready or motivated to stop. And the biggest thing is to accept her as she is, hair-pulling and all, and to make sure she knows it. I need to tell her and show her that she is loved no matter what; that she is beautiful no matter what kind of hair she has; and that she is a wonderful little girl with lots of talents and positive attributes.

There is a lot of guilt resting on my shoulders for likely having failed thus far in making sure that she is absolutely secure in the knowledge that she is loved and accepted exactly the way she is, hair-pulling and all.

But guilt is only useful if it motivates positive change. So rather than becoming mired in regret, I really want to move forward and make some positive changes that will hopefully help Annabelle.

The discouraging aspect of trich is that there really is no way to know a long-term prognosis, especially for people who start hair-pulling in early childhood. Additionally, it is apparently a condition with a high susceptibility to relapse; so, even if we get to a point where it looks like she's stopped pulling, there are no guarantees that the impulse to pull won't at some point return. This makes it all the more important to develop strategies to help her deal with those impulses.

The approach we used recently of trying to limit her hair-pulling to the chair in the playroom was a joke. It probably could have worked, and even might have worked, had it been attention-seeking behavior that we were trying to curb. But her hair-pulling is definitely not attention-seeking behavior. Live and learn.

Blocking her ability to pull (and finger-suck), as with tape or Bandaids is actually a suggested strategy - BUT not against the child's will. Then it becomes punitive and shaming, which is counter-productive. And lord knows I taped Annabelle's fingers against her will many a time. So it's not out of the question to use that strategy again, but only if Annabelle is a willing participant.

In Annabelle's case, I think she is just a very tactile and fidgety kid, so I'm thinking of putting together a box of tactile things she can use with her hands (think Kooshie balls, furry chenille stems, Play-doh, strings of bumpy beads, etc.) during times she typically pulls.

But she has to be ready and willing to try to overcome this habit. I can't force her. And if she's not ready, I need to make sure she knows it's okay.

So, long story short: I'm hoping to take a more positive approach to this whole thing, and I highly recommend this book to any parent out there who has a child with trich.


diane rene said...

thank you, Lisa. I am definitely looking the book up myself.

I'm sure I have brought some shame to Falyse with her hair twirling as well, out of my own frustration at her WANTING to stop, and neither of us knowing how to make that happen. In our case, Falyse wants long hair like her sisters, but that one side is always shorter, thinner and mangled looking. the agreement here is that we will only cut it as often as her sisters, but she has to wear it up in a ponytail for school.

Falyse has been doing this since birth ... I have no idea how we will ever get it to stop. Thanks again for posting your findings.

Larry said...

Hey have you thought about some pretty girlie gloves for her to wear in her "down" times when she may start absent-mindedly pulling/sucking? Maybe you have tried this in the past- I can't recall - but just a thought since it helps me to wear those lotion your hands conditioning gloves with my habit of picking my cuticles/biting nails when I am watching tv at night etc. L