Since I was charging forward into acceptance and my husband was lingering back in the bargaining stage, it was bound to cause strife about how much money I was spending on fidgets, headbands, hair dye, slime making supplies, thinking putty, and basically any replacement strategy I could get my hands on that I thought could help our daughter. I wanted her hair to be a symbol of control for her. Wide headbands and fancy braids to cover bald spots? No problem! You want to dye your hair purple? You got it! Eventually we found that slime making kept her hands and mind so perfectly occupied that we didn’t need much else as far as fidgets. We also found that the physical barriers of headbands and braids made it harder for her to pull from her scalp in the way that she liked, and dyeing her locks gave her a new reason to let her hair grow, showing off her style and spunk.
For those who have a child with severe pulling behavior that is more scattered and difficult to cover, wigs are a viable option if the child expresses a desire to have one. Partial hair pieces are also available. I understand that purchasing wigs and hair pieces may be cost prohibitive. My advice here is this: First, if your child is expressing shame, they need a resolution. Finding a hair piece can be just as empowering to your child as finding fun hair dyes is to mine. Second, hair pieces will act as a physical barrier just as headbands and braids do for us. These physical barriers encourage growth! That’s exactly the end we’re all aiming for.
As the extended family began coming to terms with Maela’s trichotillomania, my mom offered to buy the Keen awareness bracelet as a holiday gift.
Trichotillomania has been in our family for about four years now and in the most unexpected ways, it has changed us. Though my husband and I have always been extremely close, we found deeper value in respect and understanding. My older daughter became a cheerleader and advocate for her sister which left an impression that we all saw later when our youngest returned the favor and became a cheerleader and advocate for our older daughter. All that effort, energy, and emotion created a stronger foundation of trust, and putting our daughter in control with tools like her Keen Trichotillomania device boosted her confidence. For the first year ever, she had the fortitude to go to sleep-away camp and came home with more hair growth than we’ve ever seen. Next on her agenda is aerial classes!
How to Take Care of Yourself, the Parent of a Child with a BFRB
As I said, we’re about four years deep into our journey with Trich and we’ve all suffered at the hand of this BFRB. So, how can you find the time and energy to take care of yourself so that you can take care of your child? This is a huge question. The idea of self-care is so broad I don’t think I can even bite into it. Because self-care can be such a different thing to each person, rather than talking specifics and recommending generic things like yoga or a spa day (even typing that is making my eyes roll just a bit) I’m going to get real - gritty and dirty real.
Step one: Give up control. I’ve said it so many times already, but this isn’t the parent’s fight. Stay in your corner, be ready with the water bottle and the bandages, and let your kid dominate the ring. When you know you can’t stop the habit for your kid, you ease up on yourself and give yourself room to breathe.
Step two: Talk about it. Once you’re ready to “come out” and you have your child’s blessing to speak freely, bring it up as casually as you would any common habit. The first time I did this with a mom I barely knew at my daughter’s school, she suddenly revealed that she also had Trichotillomania and it all came rolling out of us until we were sobbing in each other’s arms on the corner at the crosswalk. Feeling like you’re alone in this is possibly the worst of it, so realizing we’re not alone, we’re all coping, we’re all doing our best, breaks the weight of it down to manageable sized bites. If you recall, I mentioned that I had started opening up to family which spurred questions about abuse and trauma which made matters worse. Had I known then how much misinformation there is out there about BFRBs, I could have been proactive in that moment and used it as an opportunity to educate them about compulsive behavior in children, removing rather than reinforcing stigmas.
Step three: Don’t sweat the battle when there’s a war to be won. There will be a lot of regression. It’s so important to acknowledge the back steps - when there’s a new bald spot, or the spot has grown, or you ask what these little hairs are that are all over the bathroom mirror and you find out they’re eyelashes (true story and I still don’t know how it happened) - with “that’s a part of the process, but the idea is to keep going and keep growing, so let’s get on with it” rather than picking at the regression as much as your child is picking at their skin. This is as essential to your well-being as it is to theirs.
Step four: Ditch the blame game. Guilt is an ugly, deteriorative beast and it’s best to just make banning it a habit. Guilt can cause you to feel frantic, and in the search for footing, it’s easy to start blaming your spouse for not being as interested in helping with the BFRB battle – or even for being too interested – and it can evolve into blaming your child for not trying hard enough to stop. In the end, everyone ends up hurt.
Step five: Be kind to yourself. There isn’t a single person in the world with all the answers, but you know your child better than anyone. If you’re doing all that you can for them, encouraging them, and providing them with tools, then take comfort in that. Sleep well at night. Know that your child will benefit most from knowing they’re loved unconditionally.
These may not sound like typical self-care tips, but managing the stress and giving yourself permission to be okay are at the core of self-care. If you need a glass of wine and a good cry, do that, too!
In the end, we parents must stay vigilant without allowing BFRBs to take over our lives. We felt so fortunate to have stumbled upon HabitAware last year, but Keen isn’t a magic wand.
And the reality is NO health condition has a magic pill or cure!
Short of a cure, Keen is the tool that can be used to make your child aware of their behavior and give them the power to take control and change their life.