We’re currently half way through the school summer holidays and I’m not sure what to make of them so far. My job is term time only so school holidays are me and the kiddies, no summer camps or holiday clubs. Generally I think that’s a good thing as Alice and Matthew would probably enjoy camps well enough but I don’t think Katie would, and especially as they’ve all got older it’s mostly nice to be able to spend time with them over the holidays.
This summer so far we’ve spent time with family and friends, had a week away in Cornwall, and we have another week away coming up. We’ve been to some old favourite places and discovered some new ones too. As there’s been a heatwave in the UK over the last few days we’ve been on the hunt for anywhere free to splash around and definitely found a couple of good spots. So for the most part the holidays are ticking along nicely (although Alice fractured her elbow during a gymnastics class which we could have done without!)
However, it makes me somewhat sad to say I’m struggling a lot with Katie during these holidays. I’ve generally been under the impression for a while now that school is at the root of a lot of her behaviours because it’s such a difficult environment for her. I tend to think back to the first covid lockdown when schools shut and the kids were at home from March to September 2020, and Katie was literally like a different child, so much calmer and more patient. Most school holidays are relatively short and she tends to spend them stressing about going back to school, but I suppose I’ve been a bit optimistic in hoping that the 6 week stretch for the summer might help her relax more than usual.
Instead I feel like I’m constantly walking on egg shells and nothing I say or do is right. She will argue that black is white and red is yellow and night is day. She’s defensive and snappy about every comment even when it’s not directed at her and even when it’s not a criticism. It’s pretty much impossible to have a conversation at the moment. Her sleep has definitely not improved and if anything it’s worse as she’s taking the usual forever to get to sleep but also waking up every night at the moment (rather than just some nights). If she’s asked to do something she’ll ignore the request or argue about it.
I mostly feel in the last couple of years that I’ve learned a lot about autism and it’s improved mine and Katie’s relationship significantly, but these few weeks feel like a backwards step. I’m finding it really hard not to get irritated by her, not to see her as rude and difficult, and honestly I’ve been breathing a sigh of relief on the days that she’s been out riding or with a friend because it’s just easier not to have her around picking fights with everyone and complaining about everything. I know she’s not doing it on purpose, and one of the things I’ve read over and over again is that behaviour is communication, so I know the difficulties we’re having at the moment are related to unmet needs or sensory issues or whatever it might be….but I don’t necessarily have an accurate idea of what they are or the best way to approach them. I know she finds Alice and Matthew difficult to be around all the time because they’re noisy and they want to do different things to her and they interrupt what she’s trying to do. I know she hates having to stop what she’s doing because we’ve got to take Alice to gymnastics or Matthew to a friend’s birthday party or whatever it might be. I know she doesn’t like it when they have friends over. But I don’t have the solution to that and I can’t split myself in pieces for everyone. The difference is that Alice and Matthew seem to understand that sometimes they’re going to have to do things they don’t want to do, but Katie doesn’t. Katie had a 4 day riding camp earlier in the holidays which meant Alice and Matthew had to get up early and do an hour’s round trip each morning, and they did it without complaining. But taking one of the other two to a friend’s house 10 minutes down the road causes an argument with Katie.
Where possible we do as much in the holidays for Katie as we can, like the riding camp or keeping up with her youth group or quiet days at home. But the girls are polar opposites in pretty much every way so where quiet days at home are fine for Katie, Alice can manage one or two and then gets bored stupid. I struggle to find the balance between knowing that Katie has more particular needs than the other two but recognising that sometimes they need to come first too and it can’t just be about Katie all the time. I also struggle with the fact that Katie either doesn’t appreciate or doesn’t understand that we do whatever we can whenever we can to keep things less stressful for her. As an example Matthew has swimming lessons on a Tuesday afternoon which Katie very rarely comes to. She usually either goes to a friend’s house instead or over the holidays John or my mum have taken Matthew swimming and Katie has stayed at home with me. Yesterday was the first Tuesday in ages that she’d had to come to one of Matthew’s swimming lessons and she kicked off about it. We also changed Alice’s gymnastics classes from a Monday to a Wednesday so that Katie didn’t have to come (because John has Wednesday afternoons off work so can be at home with the other two while I take Alice to gymnastics). I’m not expecting Katie to be falling over with gratitude about the fact that we make adjustments for her but I do find it hard to take when on the odd occasion we have to take her along with us she acts like we’ve done it on purpose just to wind her up and it’s a mammoth undertaking just to get her out the door.
Also over the last few weeks Katie has become massively paranoid about her health, which we’ve experienced on and off over the years but not to the extent she’s at now. Her sick phobia has become quite extreme to the point that it’s stopping her doing things she would normally want to do. When we’re in Cornwall she loves one of the theme parks and we have to go there any time we visit. This time she refused to go on half the rides in case they made her sick. There have been multiple car journeys where she’s been in tears in case she’s car sick, or it’s been a battle to get her in the car in the first place because she’s scared. The conversations at bed time about being sick are never ending at the moment (see previous post on bedtimes and sick phobia here). I’m not sure what has triggered this because she’s never been car sick in her life and has barely ever been sick full stop. I’m also not sure of the best way to help her through it because empathising, giving advice on how she can eat sensibly and make sure she’s drinking enough etc, or reassuring her on how unlikely she is to be sick don’t seem to make any difference. So we just go round and round with the same issue constantly rearing it’s head, and I can see that she’s panicking and stressing and I know it’s hard for her but it’s also so frustrating because it’s like groundhog day.
Every day is also relentlessly full of I’ve got a headache or I’ve got a tummy ache or I just don’t feel well, all things which I’ve previously felt are symptoms of school based anxiety but they have got more so over the holidays not less. She’s also gone from not drinking anywhere near enough to freaking out if she doesn’t have a drink with her at all times, so I’m glad that at least she’s drinking more but it’s gone from one extreme to the other. I will speak to the GP about her symptoms but I don’t think she has any illness as such, I still think it’s anxiety related. But again I’m not sure of the best way to support her with that.
Katie’s need to be around me or know where I am is also quite difficult for me at the moment. I love my kids dearly but I appreciate breaks from them as well, whether that’s 10 minutes or a whole day to myself. Alice and Matthew are in bed by 8pm so that’s a bit of evening down time as far as they go, but Katie is up with us all evening. During the day she wants me to let her know if I’m going upstairs / downstairs i.e. a different floor of the house to her, and she will immediately come with me. If she can’t see me even for a minute she’ll be calling for me or come and find me. She wants me to do her bedtime every night and doesn’t want John doing it. She’s started requesting when I’m on the toilet that I leave the door open so she can still see me. I’ve refused to do this and explained that it’s private and offered that she can talk to me outside the door if she wants to, but it’s still causing some problems because she still gets upset about me shutting the door. She doesn’t see herself as a child or appreciate that some things aren’t yet appropriate for her, so for example if I’m watching TV she wants to sit with me and watch too. Sometimes that’s fine but sometimes the content is not OK for her, so then I ask her to watch something on the laptop or her tablet instead or read a book etc. She usually does, but only after a long discussion and/or some anger on her part. The other day I really needed some space so I took a cup of tea out to the garden. John was in the house so Katie wasn’t on her own, but still within 30 seconds of me sitting down she was there next to me and found it very hard to understand when I explained to her that I wouldn’t be long but I just wanted to be on my own while I drank my tea. She seemed really quite hurt by it so then I just felt guilty for wanting some space but I feel like she’s my prison warden at the moment. She’s there with me constantly through the day, I’m with her all evening, she’s getting me up every night, and it’s draining. I love John, I love my mum, my sister, my friends, but I value my own space and time as well and I don’t want to be with any of them 24/7…and I’m not. I love Katie too but I don’t want to be with her 24/7 either….and I am.
The ironic thing is that Katie can’t wait to be an adult because she thinks she’ll be in control. She doesn’t believe me when I point out the things that adults do because they have to, not necessarily because they want to. She has no realisation of the extent to which she is in control of me. It’s exhausting having to constantly negotiate my right to do really basic things like watch TV or go to the toilet on my own or go outside to hang the washing up. I don’t get to go to bed when I want to, I don’t get to regroup, I don’t get to have my own agenda. The bedtime sagas are slowly driving me insane, particularly at the start when Katie goes to say good night to the guinea pigs and checks the doors and windows (because she doesn’t feel safe relying on me or John to lock the house up). She has a really strong compulsion to do the same things every night, check the locks on the guinea pigs’ hutch are straight, put the door handles a certain way, tug on them x amount of times, etc etc. It goes on and on and it’s fine if doing those things make her feel safer or more secure, but it’s the fact that she wants me stood right there with her while she’s doing them all that drives me nuts. If I don’t stay with her she won’t do them and will go straight into meltdown mode. So I stand there gritting my teeth and desperately trying not to let her see how much I hate it and how I want to scream the second she starts with the never ending tugging and tweaking which take long enough on a good night and forever on a bad night.
I know there are professionals out there who would say we’ve gone too far in what we (or I, as I’m the one who is home with the kids more) allow Katie to ‘get away with’ (such as the ones who told me to put a time limit on how long she can have to discuss her worries, after which we should refuse to engage with her especially when it comes to bedtime) and that she needs discipline and consequences. I’m fairly sure that’s what I would have thought before I had Katie. I’m also pretty sure these professionals don’t have autistic kids and if they do I would think their kids are struggling even more than Katie if that’s their approach with them. Discipline and consequences don’t work with Katie. They make her angry, confused and dysregulated. Empathy, feeling heard and accommodations help her and that’s the route I’m following as far as possible (and that doesn’t mean boundaries don’t get implemented, e.g. no watching me on the loo!). But some times for Katie are easier than others, and some times for me are easier than others, and at the moment it feels not easy at all.