One thing that people don’t understand when they meet Lil Z for the first time is that she actually has boat-loads of charm. But when you first meet her, it isn’t always evident. She rarely looks people in the eye – and it is even rarer for her to look at someone new or that she doesn’t know very well. Instead, she’ll give you a sidelong look and then refuse to look at you again, no matter how friendly and engaging you might be.
In fact, it has very little to do with you as such. Her CVI (cortical visual impairment) means she doesn’t often look directly at anything – and faces are particularly difficult to interpret if your vision is poor. And if you’re standing far away, its unlikely she can see you very well, but no one likes a stranger invading their personal space, so she’ll object if you get up close and personal. In short, you can’t win when you first meet her.
But getting to know Lil Z is rewarding. It just takes a bit of time for her personality to shine through. She isn’t like her big sister, who boldly walks up to new people and starts a conversation. She makes people work to get to know her, and then rewards them for their efforts.
The problem is that once she’s charmed you, she knows she’s got you. And that she can get you to do anything for her. Mostly, she charms through affection. No one can resist a Z-cuddle. Which is why she’s so accustomed to sleeping in her carers’ arms (she much prefers a nap on someone to a nap in bed). It is also how she manages to get out of therapy sessions: she rubs her eyes and lays her head on their shoulder and few therapists have the heart to force her to go on with her exercises. Her male therapists seem particularly vulnerable to this ploy – she’s got them totally wrapped around her finger.
This charm – and how she uses it to manipulate people – is one of the few means Lil Z has at her disposal to get her own way. Being unable to communicate or to control her body to be able to stand, walk or even sit, she is almost always at the mercy of other people to decipher and meet her needs. She can’t eat – or ask for food – when she’s hungry. She can’t request a particular toy, cartoon or activity. She can’t ask for help when something hurts or when she needs a clean nappy. With her back brace on at night, she can’t even roll herself over when she’s tired of sleeping in one position. Of course we are actively working to improve her communication skills so she can tell us what she wants, but so far we haven’t made much progress. Instead, she relies on those caring for her to figure out what is bothering her and make it right.
It must be unimaginably difficult and frustrating being Z.
However, Lil Z has expanded her repertoire of manipulative actions beyond just charm and cuddles. She has learned that particularly with her parents, the promise of a cuddle doesn’t always work. Not that we don’t love a cuddle with Lil Z, but we simply can’t spend all our time doing it. So she invented ear scratching and hair pulling.
Sometimes these actions are her sensory seeking behaviour or Lil Z getting caught up in repetitive actions that she’s unable to stop. But sometimes, these are also used to get her way. And they are effective. We may be able to pass up the Lil Z charm, but it is impossible to ignore her when she is trying to remove her ears with her fingernails.
Let me give you an example. Last Saturday, we went out for lunch. Lil Z was in her special needs pushchair, right up at the table with the rest of us. At first she was happy sitting there and looking around. But she quickly got bored. And she doesn’t particularly like sitting in her pushchair – especially when there is a warm lap nearby. So, right as our burgers arrived, she started scratching her ears.
I tried to distract her by holding her hand. This sometimes works – especially if she’s caught up in the repetitive action of ear-scratching – but this time it didn’t. And anyone who has ever tried to eat a ‘gourmet burger’ with one hand will also know that it wasn’t working particularly well for me either.
So, Lil Z got her way. I took her out of the pushchair and held her on my lap. And she was happy. I was less so, since I still couldn’t eat my burger, and was left nibbling on my chips until QB finished his burger and held her while I ate.
We do this a lot (giving in to Miss Z, not eating burgers), and I realise that it is giving in to her manipulation. If anything, we are encouraging her to scratch her ears by teaching her that it gives good results.
When I picked her up at school the other day, her teacher commented that several times she’d been unhappy sitting in her pushchair and had begun scratching her ears. She asked how we deal with it when it happens. I was rather embarrassed to admit that we usually gave in to her demands, and that she usually wanted to sit on someone’s lap. Turns out that was exactly what the teacher had done when Lil Z got scratchy during music therapy.
The teacher also commented that it is so hard for Lil Z to communicate what she wants, that maybe it isn’t always a bad thing to let her have her way.
It is an unusual situation. In most situations, constantly giving a child what they want would be considered spoiling them. I try very hard to get Vegemite to understand that she can’t just demand something and get it. But then, Vegemite is demanding lollies or Barbie dolls or some toy that she saw on tv. Lil Z is demanding things that Vegemite just does without even thinking about it. So, is it spoiling her to give her her own way, or just giving her a bit of control in her own life?
Most of the time, I don’t worry that I’m spoiling her. Responding to her demands gives her a little bit more control, encourages her to communicate with us, and makes everyone just a little bit happier most of the time (after all, who isn’t happier after a Z-cuddle?).
Lil Z also has so much to deal with in her life, that giving her her way only seems fair. She is dealing with so much stuff medically that indulging her preference to sit on someone’s lap rather than her pushchair seems almost irrelevant. Although I do worry about what will happen when she gets too old to sit on my lap – or will I be sitting in the burger restaurant holding a 15-year-old on my lap in 12 years time?
It also makes me wonder how far we go in giving her control. She hates therapy – mainly because she hates being made to do things that she doesn’t want to do. Her therapists have told me that I often let them push her farther than other parents, who intervene when their child starts to seem unhappy. Then again, if I intervened every time Lil Z seemed unhappy at a therapy session, we’d never get anywhere. So, I let them push her.
We have one physio in particular who doesn’t mind being the ‘bad guy’ and pushing Lil Z out of her comfort zone. She is immune to Lil Z’s charmingly manipulative ways of escaping exercises. This may make her sound mean, but she’s not – she is just challenging Z in new ways. Lil Z doesn’t like new and doesn’t like being challenged, but if I let her stay in her comfort zone, then nothing will ever change. So, I let the physio do her exercises and ignore the grizzling and grumping coming from Lil Z each session.
But the great thing about letting the physio be the ‘bad guy’ is that I get to play the ‘good guy’ afterwards, giving her cuddles and kisses and generally rescuing her from the big, bad physio-terrorist. So, maybe we do spoil her a bit, but at the end of the day, I think I’m OK with that. And I know Lil Z definitely is…