QB and I have a long-running and fairly inappropriate joke. It is about how Lil Z doesn’t in fact have a chromosomal disorder, she’s just inherited all the crappy genes from both sides of our family. So, she doesn’t have microcephaly, she has just inherited my pin head (I do indeed wear kids’ swim goggles and share a hat size with my 6-year-old). Hand-wringing, fussy eating, anxiety, grumpiness, lack of talking – they can all be blamed on someone in her extended family. And the crowning characteristic (both literally and figuratively) is her hair.
Lil Z’s hair is as crazy and unpredictable as she is. It is thick and wild and grows every which way. It defies hair clips and buns and all but the strongest and stretchiest of hair bands.
It is, without a doubt, inherited from my side of the family – my mother’s side of the family, as a matter of fact. I, along with my brother, mother, and a number of cousins, all have variations on this crazy hair. Her wild and crazy family hair is one of the things I love about her. Even if it drives me crazy trying to tame it every morning.
For the longest time, Lil Z showed that she was unhappy, in pain, bored, frustrated or otherwise unhappy by scratching her ears. Sometimes it appeared to be voluntary – and at times she even used it as a demand for attention. Other times, it seemed to be an involuntary repetitive action that she didn’t enjoy any more than we did.
Most of the time, I tried to address the problem by keeping her fingernails well-trimmed and during periods where she was doing a lot of scratching, I would put socks, mittens or leg warmers over her hands so that she couldn’t inflict too much damage on herself. Still, there were occasions when I couldn’t intervene and she’d give herself a gash on her ear that would bleed everywhere.
Her therapists and I attributed the scratching to a combination of her sensory processing problems (she doesn’t feel pain or other sensations the way we do, so seeks out ‘stronger’ sensations to compensate) and her Rett-like repetitive hand actions. Lately, we’ve been pleased that the ear-scratching has decreased substantially. But, of course, we were celebrating too soon.
Enter the switch from ear scratching to hair pulling. It started with Lil Z enjoying putting her hands behind her head to feel her hair. I thought this was quite sweet, especially as I like the feel of her soft, fluffy hair, too. Unfortunately, it turns out that she was just getting started. Fondling her hair turned to grabbing it and giving it a hard yank – usually strong enough to pull out a handful.
The au pair and I have been fairly diligent about not letting her pull her hair. As with ear-scratching, it is a combination of repetitive activity and a sign of frustration or pain and she is most likely to do it when she is tired. It is fairly easy to disrupt because along with learning to pull her own hair, Lil Z has also recently learned to hold your hand – and finds holding hands very calming. So, as long as you hold her hand, she’ll desist from pulling her hair. Of course, this isn’t particularly conducive to achieving anything else, but at least it works.
However, it is a different matter at school, where she is more often frustrated, and not quite as closely monitored at home. A few times the au pair or I have been horrified to find her pushchair covered in hair that she’d managed to pull out during the school day.
Recently, the hair pulling seems to have become worse. She’s had a few bad days where she’s pulling at her hair almost constantly. And she does it at night in bed – leaving me to find tufts of hair covering her sheets the next morning. As a result, she’s got a bald spot in the back of her head – where she’s managed to pull out nearly all her hair. Soon, she’ll look like a little old man from behind, with a fringe of hair around the base of her head, and then nothing.
Strangely, especially since the ear scratching often involved her drawing blood, I find the hair pulling more distressing. I think I’d hoped she had outgrown it – because at the end of the day, she’s hurting herself (whether its sensory seeking behaviour or repetitive activity or stubbornness – it doesn’t really matter) and that in itself is upsetting. There is also no worse feeling that going to get her up in the morning and finding her bed full of hair – which she was silently pulling out while I slept. If that doesn’t make you feel like a bad parent, nothing will…
It is also distressing because it has to do with her appearance. I’m conscious that she already stands out as different, and the bald spots just make her more different. As Vegemite summed it up: “its embarrassing to have a sister who is bald”.
But worst of all, it’s that she is pulling out her hair that I love so much. It makes me laugh and reminds me that despite everything else, she’s still part of the family. So, the fact that she is pulling it out – even if it’s not intentional – is heartbreaking. Her hair is part of her personality and I don’t want her to lose it.
Hair pulling is pretty common amongst girls with Rett Syndrome (see this for a great blog post about hair and Rett Syndrome). So, I turned to some mothers of girls with Rett Syndrome for advice. The advice was pretty conclusive: her hair needs to be cut short enough that she won’t be able to grab it. If her hair is kept too short to grab for a while, it will break the cycle. No doubt she’ll find some other way to express her unhappiness, but at least it won’t leave us choking in a cloud of hair.
So, it is goodbye to the “palm tree” ponytails, the two tiny buns that look like little horns, the messy buns and cute ribbons that fall out almost as soon as you put them in.
Welcome, to the new look Z…