It’s the last day of term and parents nationwide are rejoicing at the thought of two weeks without the frantic rush of the school run, the tedium of nightly spelling, and the balancing act of creating healthy and nutritious (and in my case gluten-frigging-free) school lunches the children will actually eat. Well, nationwide might be an overstatement; I know school holidays can be really hard to manage and for many families there is still a morning rush and lunches to be made regardless of whether school is running or not. We’re all happy about the lack of spelling homework though, each and every one of us.
There are some parents who are looking forward to the holidays as an opportunity to spend some quality time with their children. They have plans: excursions, crafts, baking, family picnics. Things they know the kids will enjoy doing and so, by extension, they will enjoy doing too. I wish I was one of those parents.
Oh, I have plans. We’ll do plenty to fill the term break. But I’m not looking forward to them. I don’t anticipate them being too much fun. In fact, the dread and anxiety are settling as a fortnight of 24/7 childcare stretches out before me. Two weeks of hard work, because life with my eldest is a bit like that at the moment.
Earlier in the year, she was diagnosed with Sensory Processing Disorder (SPD). It affects different people in different ways but for her it means she’s oversensitive to touch and sound. When I write it down like that, it seems like no big deal, like it’s not really a thing. But It is a thing and it can be a right bastard.
You know how sometimes you get a pebble in your shoe and it’s annoying but you can put up with it because you need to get somewhere and you don’t want to have to stop and take your shoe off? Mildly annoying, maybe a bit painful, but you can deal with it. Until you can’t. At some point, you’re going to get sick of that pebble and get rid of it even if it means taking off your heels at the bus stop to do it. Well, that’s how SPD affects my daughter, except most of the time there’s no putting up with the pebble. She goes straight to heels off. It’s things like seams in clothes, or knickers, or a banging sound in the car, or wind on her face, or chewy meat, or scratchy fabric, or anything really, it changes day by day.
Some of it’s manageable. She doesn’t really wear socks, despite the silent judgement of the school mums who think my child is going to contract pneumonia. She went through a stage of sneaking off and removing her knickers, which is sort of OK as long as she’s wearing pants, but not so OK when the 2016 Father Christmas photo is taken sans underwear and you only realise the fact when your child is perched at the very top of the local playground where you took the kids for a run around after the photo shoot. Monkey bars and cartwheels, similarly not OK.
On good days it’s just an annoyance. More for her than me of course. I can pre-empt some of the possible issues. We’ve bought socks with no seams. We’ve finally found some knickers she finds comfortable (most of the time). I cut all the fat off her meat.
Other days, it feels like a curse. Those are the days where seams and fabric and knotted hair and too smooth yoghurt (yes, apparently that’s a thing) are all just too much and we end up in meltdown mode. It’s usually when she’s anxious about something, like discovery mornings at school where the daily routine is different or following a day away from home where she manages to hold it all together and so comes back sapped of energy and ready to let loose. Think of a humdinger of a tantrum, multiply it by 100 and you’re there. She flings herself around on the ground, pulls her own hair out, scratches herself, howls and screams, bangs herself against things, throws things, tells me she wants to kill herself, and she just can’t stop. She can’t. I’ve tried to let her come out of it by herself but two hours in I couldn’t stand it any longer. I hold her like she’s in a straight jacket until she calms down.
The reality is, it’s been four years of hard work. Saying ‘at the moment’ is a small comfort. If I can tag it on when someone asks me how things are going, I’m not condemning my child as bad or difficult or disordered; it’s not who she is, it’s just a rough patch we’re dealing with. I want to believe it about her, and I want other people to believe it too. I want people to see her sweetness and her intelligence and her curiosity. I want them to invite her over for playdates because they think she’d be a lovely friend for their child. I want them to see more good things than bad.
Some days I struggle to see these redeeming features. I’ve dealt with her big emotions, overreactions and downright nastiness for so long it’s hard to find anything to like about her at times. It makes me feel wretched to have to remind myself they exist, list them off in my head so I don’t just walk out the door or scream my despair up to the sky. I look at the pictures of better moments we have adorning the walls so I can replace the image of her contorted, furious face with one of her smile.
Sometimes though, I wish she was a right little horror at school, just so I’d have other people who could understand what I’m dealing with. And so I wouldn’t feel so inadequate as her mother. She is worse for me than she is for anyone else. My rational brain knows that’s normal, because I am her safe person, the one who loves her regardless and with whom she can let her guard down and feel what she needs to feel. That knowledge doesn’t make the behaviour any easier to deal with. My emotional brain just thinks I’m rubbish at being her mum.
I once worked with a student who had terrible eczema. Even her eyelids were affected. Apart from the fact she looked quite shocking, at a time of life when no one wants to stand out for the wrong reasons, she was also in a perpetual state of irritation and as a consequence, she was unpleasant. Unpleasant in the extreme. I don’t remember ever seeing her smile. She was frequently getting into conflict with her teachers and peers. The small number of friends she had were uniformly frightened of her and she was often alone at break time. It didn’t matter what you said or did, this young woman did not have it in her to be kind in response and while the reason for that was obvious for all to see, it didn’t make people like her any more or make her any more easy to deal with. I think there was a collective sigh of relief when she finished school and moved on.
This is the future I sometimes envision for my daughter. It terrifies me.
My child doesn’t have anything visibly marking her as different from the other children, and I know this should be a blessing, but there is nothing anyone can see to help them understand her behaviour. She suffers the same, if not more, irritation, but no one can see the source. Some people, including her father, don’t really believe she has anything wrong with her at all. Some don’t even believe me when I tell them she’s hard work because in public she’s generally the picture of good behaviour. Her father believes that, he sees it first hand, but I know he thinks she’s just being a brat, that I’m too soft, that I’m just looking for excuses to explain her behaviour. Because he thinks those things, it can be a challenge for me not to believe them too.
On the worst days, it is what I believe. On the days when my strategies make no difference, when all the reading I’ve done means nothing at all, when it feels like everyone in our home is at the mercy of her mood and behaviour, on those days, I feel like I’m doing all of this wrong. Those are the days I worry most intensely about how I’ve made things worse. About whether my three bouts of depression she’s had to live through have made her anxious and angry. About whether my inability to find joy during those times has left her struggling to find her own.
The thing that haunts me most is the thought that I have come to find her harder to love than my other children. What sort of mother am I to feel that way? I read something from Nigel Latta where he says how children assume they are loved. But my child asks in the midst of her biggest storms whether I love her. On occasion she has declared I don’t, or at least not as much as I do the other two. She assumes nothing. I tell her I love her, of course I do. I do.
But what does it say about me as her mother that she has to ask?