by Courtney & Maela Spainhower
It’s that time of the year again when we’re wrapping up summer, squeezing the last drops of fun out of break before returning to the school grind. For our family, that means re-stocking closets after uniforms have been outgrown, sorting supply lists, finding the perfect back-to-school hair color, and emotionally preparing for the near-hour drive each morning to get across town during rush hour so that our girls can attend charter schools. That daily drive back and forth across town is one of the many things we do and costs we pay to support our youngest daughter to ensure she’s in the best possible environment for learning with Trichotillomania.
With that said, I’m so happy to be here, on the HabitAware Blog, to talk about parents supporting their children with BFRBs, the true costs we pay (and the rewards!), and the very tricky subject of self-care when we spend so much time and emotional energy caring for our BFRB kiddos. While our family has experience with just Trichotillomania, I think my suggestions can be applied to families experiencing any BFRB, including skin picking (Dermatillomania) and nail biting (Onychophagia).
How to Support Your Child with Their BFRB
When we first realized our youngest daughter was not only pulling her hair, but compulsively pulling – progressing rapidly from eyelashes to eyebrows to scalp, with bald spots appearing overnight – it was time for us to take a breath and confront the situation. Like many parents, our first inclination was to monitor her and see if she would stop on her own because as any parent can tell you, sometimes kids just do “weird” things. As the pulling progressed, we slid into quiet denial and hoped we were over-reacting. But as if we were going through the five stages of grief, we tumbled through anger, bargaining, and depression before finally settling into acceptance that this was our new normal.
I’ve spoken to many parents of children with Trich, at all stages of the process toward acceptance, and they’ve walked me through their coping strategies that range from avoidance (early denial stage!) to over-involvement (anger to bargaining stage!). The first piece of advice I give is to never, ever allow the BFRB to define your child. We made it clear to our daughter from the start that Trich is something she does, not what she is. I also encourage parents to remember that this is our kid’s thing, not our thing. It’s easy to try to take control of the BFRB for them, but if we as parents push hard enough, eventually the child is going to start pushing back and any progress will halt. It’s a delicate balance when we need to address the issue while ensuring it doesn’t become the central focus of our lives.
So, how do we do it? We put our kids in control. Open communication by first telling them that even though this is an impulse – something they do without knowing, or something that they enjoy so much they may not want to stop – they are the only one that can change the habit. This is one thing parents can’t help with, because the child must make the decision to stop, and putting them in control gives them a sense of power that they may not already have. This sounds deep when put into the perspective of having this talk with a child as young as seven, but it doesn’t have to be in conversation. For us, it went like this: “I know that you’re having a hard time right now with the pulling, and you’re tired of talking about it, but in the end, Mama can’t stop it for you. You gotta decide every day if you’re gonna pull. Every time you notice you’re pulling, that’s a moment where you make a choice – pull or stop. Some days you’ll decide to pull, some days you’ll decide to stop, and that’s okay. The more days you decide to stop, the better it will get, the easier it will get, and you’ll be so proud!”
This is where our daughter’s Keen habit tracking bracelet came into play. When we were together, it was easy for us to spot “the look” with her eyes glazed over, her little fingers finding their way to her eyelids, and it was our cue to intervene. However, bedtime was the perfect storm for pulling bursts. It’s dark, it’s quiet, she’s tired, her hands and mind are unoccupied, and there are no parents around to redirect her. I would go in to give her a kiss and her comforter would be covered in hair within mere minutes. What we needed was a way to alert her to the pulling so that she could make those important decisions, right?
She’s an automatic puller and is normally unaware that she’s even performing the action – without noticing, she has lost her power; her control. Once we trained Keen, we tested it out on night one, and within a minute of her bedroom light going out, I heard giggles. A few moments later, more giggles. I popped my head in, “What’s going on in here?” She was sitting upright in bed and answered, “This bracelet buzzed! I didn’t even know I was doing it and then the bracelet buzzed. I stopped and then all the sudden it buzzed again! This thing is on to me.” We both laughed. That’s exactly why we got Keen!
Night two went a bit differently. I didn’t hear giggles, I heard movement. I popped my head in and the Keen was on the floor. “What’s up? Why aren’t you wearing your bracelet?” She just looked at me for a moment and said, “I don’t like it. It’s buzzing.”
I had to take a little breath.
“Well, that’s why you have it. It’s supposed to buzz so that you know you’re pulling and then you can decide to stop or not.”
She groaned and put it back on.
Again, there must be balance between encouraging your child to use the tools we provide, and inadvertently turning those tools into punishments. It’s so important to avoid turning these scenarios into “do it or else” because this is a life-long battle your child is going to face and ultimately make their own decisions about. To want instant results is normal, to demand them is harmful. How we have found balance is by asking questions like, “I noticed you were messing with your lashes, do you want me to make sure your Keen is charged?” This opens up conversation about using her tool without making it an issue. This is a marathon, not a sprint as they say.
How to Involve the School in Your Child’s BFRB
Something I really like about Keen is that it’s designed to look like a fitness bracelet. This takes away attention that can lead to shame for a child. Our daughter can wear her Keen to school without any sideways glances or prying questions.
But our children shouldn’t feel that they need to hide at school! In fact, we’ve found communication with teachers and school staff to be extremely helpful for Maela to manage her trichotillomania.
Most schools have paperwork allowing you to make the school aware of medical or other issues your child may have. This is a great time to jot down a bit about your child’s BFRB so that it’s on file. I email my daughter’s teachers at the beginning of each year to let them know that she has Trichotillomania, I give a run-down of what is Trichotillomania since it’s widely unknown, how we help her with her pulling at home by keeping her engaged, wearing her Keen, using fidgets, and I let them know that she will have her Keen and her quiet fidgets with her at school to be used as needed. I know how busy we all are as parents, so here is a template YOU can adapt when writing to your child’s school.
We’ve been fortunate in that we’ve never had a teacher take issue with any of it. In fact, we had the same teacher two years in a row who adored our daughter so much and made it part of his routine to keep an eye her and communicate with us whenever he saw a change in her pulling habit. He would contact us if he didn’t see her pull at all that week, or if he saw her pulling more than normal, and he took it upon himself to redirect her to disrupt the behavior. It’s important that your child’s teacher is aware that the fidgets aren’t toys and they aren’t to be a topic of conversation. The way her teacher addressed this last year was by telling the class that she had certain tools to help her work and that they were not to be touched by another student, period. He became an integral part of her journey, and a blessing to our family in the peace of mind he gave us. So much so that we were moved to honor him. >>>
The Family’s Cost of BFRBs…and the Rewards
This brings me to the cost of BFRBs, both emotional and financial. The emotional journey the entire family takes is an epic one. I’ve already dipped into how similar the journey to acceptance of your child’s BFRB can be to the stages of grief, but I want to stress that just as with grief, this process can take months or years. It’s going to look very different from one family to the next, and it’s even going to vary from person to person within the family.
For us, I was quick to move from denial to anger and bargaining. But my husband clung to denial, holding out hope and saying things like, “I still think this is something she may grow out of,” which was infuriating to me. I wanted him to get his head out of the sand and start being part of the solution. As far as I was concerned, the longer we waited, the worse it was going to be to temper. I dove deep into the information I could find online, contacting therapists and hospitals, applying for medical studies, ordering fidgets and hypnosis tapes…all while I tried putting her to bed with socks on her hands, hats on her head, and salves on her eyelids! I was frantic and felt completely out of control. This chaotic stage lasted months.
Then, depression slowly set in and I spent days in bed while the girls were in school, sobbing and reading blog posts by women suffering with Trich as adults, teens whose parents forced them to shave their heads, and imagining my daughter struggling like this forever. I tried opening up more to family about what was going on, and even though they were doing their own research and coming to me from a place of love, it was laced with judgement and I began feeling persecuted.
No, my daughter wasn’t abused, no she isn’t suffering trauma, no it’s not my fault… or is it? Was there something horrible that she experienced, and I managed to miss it along the way? As you can imagine, that sent me reeling into deeper depths of shame and despair. I think it’s important to note that my husband was still floating along the denial river through all of this.
Eventually, I pulled myself up and decided that wallowing wasn’t helping anyone, especially my daughter. For me, acceptance meant we all were going to accept this as normal. I had a few emotional talks with my girl and I asked if shedding the shame – “coming out” and letting the world know that the stigma of hair pulling is unwarranted – was something she was ready to do. She was, but she eased into it and I followed her lead.
For her, telling her closest friends was a first step and they were loving and curious. They had a few questions about it like asking if it hurts to pull, but mostly they were encouraging without judgement. Her next step was to tell some of her friends at school. I made sure to ask her permission to talk about it with any friends or family members, but most of all, I asked before ever touching her hair and exposing her bald patches to anyone. This is a sure-fire way to exasperate an already delicate problem.
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.
Never give up.
Courtney + Maela Spainhower
About Maela and Courtney:
Maela is 11 years old, and a yogi in the making plus handy with a chef’s knife. She’s had a ton of growth in the past year, especially in the large, oval spot that sat squarely on the top of her head. To all our surprise, the hair she pulled and has now re-grown, transformed from stick straight to full-blown spiral curls. Courtney is her mama and is a knitwear designer and author. They reside in Indiana with the rest of their family including Nate the dad and Alizah the sister. The wild and crazy household is rounded out with chickens, dogs, and one very cute rabbit.
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