A home away from home

We are really lucky that my dad and his partner own a house in Newquay so once or twice a year we head down there for a few days, and that’s what we did in the last week of these summer holidays. We left John at home as he was working, and we went down there with a friend and her two children. We met Claire at NCT classes when I was pregnant with Katie and she was pregnant with her daughter T, so we’ve been friends for 9 years now. She also has a little boy just a few months older than Matthew.

We had a brilliant week. The weather was better than forecast, so every day it was warm and sunny with bright blue sky, we were on the beaches and the kids were splashing around in the sea and climbing round the rock pools. We kept hearing how rammed Newquay was with tourists this summer but we went a bit off the beaten track and managed to avoid them all. We had pretty much deserted beaches. We also spent one day at a theme park which wasn’t too busy either. The kids all get on well, it was lovely to spend some time with Claire, we have lots of happy smiley photos and we had lots of ice cream! Picture perfect.

But…there is always a but these days and it’s always me worrying about Katie and then worrying that I over worry. She did have a good time and she’s always happy to hear when we’re planning to go down to Newquay, but it was also clear that there were times when she was struggling and I’m still never sure if I’m managing those times in the best way for her.

Noise is always one of her biggest triggers and there is no denying this was a noisy holiday! 5 children and 2 adults in a 3 bedroom house, including two very loud and boisterous boys aged 4 and 5 who egg each other on and get even louder and more boisterous when they’re together. As the week went on Katie’s fuse got a lot shorter with them and she was yelling at them to shut up and pushing them out her way. I shared a room with Katie so she didn’t have to share her space with the other children and could retreat if she needed to, which was the best option I could think of, but it wasn’t great because she still doesn’t want to go upstairs on her own if there is no one else up there with her so she didn’t do it unless she was desperate. The times when she did choose to do that were more frequent towards the end of the week. She also started the week off eating at the table with the others (her choice) and by the end was preferring to eating on her own.

I thought her bedtimes might be easier given that we were sharing a room (and a bed) so her issues with being on her own wouldn’t be applicable, but they weren’t really. She still wouldn’t go to bed until me and Claire went up, so I ended up cutting our evenings short sometimes and going to bed when I didn’t really want to but I was worried about Katie staying up too late especially since we were busy during the days. She switched some of her home routines for different routines in Newquay. She still took a long time to get up to bed because she was checking that the doors were locked, shutting the doors between different rooms, making sure there were no gaps between the curtains and checking that there was no one hiding in cupboards or under tables. Even when she was asleep I don’t think she was properly relaxed because she kept sitting up in the middle of the night and asking where I was even though I was right next to her.

I’ve mentioned before that Katie loves theme parks and the day we went to the theme park was probably her favourite day but it’s noticeable as she gets older how hard she finds it to take other people’s opinions into account or to compromise. She just wanted to go on the rides she wanted to go on and found it really frustrating if the others wanted to do something different. Matthew and Claire’s boy were too young / short to go on the most of the rides without an adult so we had to stay with them or they wouldn’t have been able to go on much, but that didn’t help Katie because it meant one of us couldn’t go off with her at any point. She really prefers to be in control of situations where possible so when we were getting on rides she always made sure she was on first and she was the one getting to choose where she sat. She wanted to sit on her own and not pair up with anyone.

Towards the end of the day we said to the kids they had time for one more ride so could they choose together what they wanted to go on. They all chose the rollercoaster so we went and got in the queue. But then Katie decided she wanted to go and see the horses again, and that was a point when I wasn’t sure what to do. From my point of view it was really frustrating that they had collectively made a decision and then Katie was changing it. No one else wanted to see the horses again and it would have been easier if Katie could consider the majority view over her own, especially given that she likes rollercoasters too so it wasn’t like she was being asked to do something she hated. If I went with Katie to go and see the horses it meant Matthew couldn’t go on the rollercoaster because there wouldn’t be an adult to sit with him. If I stayed with Matthew it meant letting Katie wonder off round the park on her own which I wasn’t comfortable with given that she’s only recently turned 9, or potentially having a meltdown at staying with us and not seeing the horses. But then from Katie’s point of view she had spent all day going on rides that she didn’t always want to go on and being told when she could and couldn’t do the ones she really wanted to. For her, she couldn’t care less whether Matthew and his friend got to go on the rides or not and it’s not her problem that they needed an adult with them. She likes theme parks but there’s still all the noise, the standing in queues with people close to her, and adrenaline rushes from the rides so she’s already on edge. Plus the fact that although she had already seen the horses she had been moved on from them sooner than she would have chosen to be because everyone else had had enough by then. So in the end I said she could go off on her own to the horses while we went on the rollercoaster and it was fine, but I was really uncomfortable with not being able to see her and I do feel she’s a bit young to be going off on her own. Also I don’t understand how she hates going upstairs or downstairs on her own in a house but she will happily wonder off round a field or at a theme park! She was also happy to wonder off at the beach.

Katie also found it very difficult to share T with Alice, which was predictable but I still don’t really know how to help her with that. Katie and T have always got on well and are only 5 days apart in age so they naturally pair up, and the boys naturally pair up, and Alice is left on her own a bit. She is absolutely fine with that and she’s quite happy to play with the boys, or to do her own thing, but she does also get on well with T and it shouldn’t be an issue for her to also spend time with T or with Katie….but it is. Katie absolutely hates it and she point blank refuses to make a three with her, Alice and T which means T effectively has to choose between Katie and Alice as to who she spends time with. To be fair she only tended to spend time with Alice when Katie was choosing to be on her own for some quite space, but even then Katie still hated the fact that they were together. At those times she would be angry with both of them and would be feeling that T was being mean to her and didn’t want to be her friend anymore.

Katie recognises in herself that she finds it hard to share her friends, and I spoke to her before and during our holiday about the fact that if T wanted to spend time with Alice that was OK. It doesn’t mean she likes Katie any less and it doesn’t mean she’s being horrible to her. It’s not fair on T when Katie gets cross with her when she hasn’t done anything wrong. It’s a really hard concept for Katie to learn because I think she can sort of see the sense in it but her emotions overwhelm her. I also really sympathise with Katie because she’s in this constant battle of liking someone but then feeling betrayed by them.

So anyway, a lovely time away and the majority of it was great fun and everyone enjoyed it including Katie. It’s just always in my mind as to what can we do differently to avoid stressors for Katie, and could the holiday have been better for her – it probably could. It’s always such a balancing act between what she needs and what the others need and I’m never sure I’m getting it right.

Sleep

Once upon a time I had three children who went to bed at a sensible time and slept all night. There was a sweet spot of a couple of years when we had no babies needing night feeds and other than the occasional wake up because of a bad dream or a wet sheet the kids would generally be in bed by 7.30 and we’d not see them again until about 7 the next morning.

We have always been consistent with bedtimes and kept a simple routine. We did everything by the book, and when it works it’s easy to feel a bit smug. It’s straightforward and everyone is well rested and happy. Simples.

Until it’s not any more.

Alice and Matthew are still pretty straightforward – teeth, pjs, story, hug, love you lots see you in the morning. Job done. Katie’s sleep has gone completely to pot and so has her bedtime routine. We now do everything ‘wrong’ as far as promoting a good night’s sleep goes, but it’s the only way we can even get her to go to sleep and avoid a meltdown every night. Doing everything ‘right’ just doesn’t work with her anymore. At some point her anxiety and need to be in control took over and bedtime changed fairly drastically. There’s so much to unpick with it now I don’t even know where to start, and it’s that whole catch-22 where we’re tired and probably can’t see the wood from the trees now in terms of knowing how to make bedtime a better experience for Katie and for us.

Getting Katie in to bed in the first place takes ages. She has a whole list of things she has to check before she will even think about going to sleep. These include promising that we won’t be burgled, that she won’t be kidnapped, that we’re not going to leave, that there are no such things as witches and wizards and giants, checking that her window is shut, checking that there is nothing in her wardrobe etc. It’s a long list and it’s hard work to stop her constantly adding to it. If she misses something out or doesn’t hear the answer she will start again. She also double checks everything, for example she will want us to promise that she will still be alive in the morning and then she will want us to promise again on our life. Her curtains have to be shut in just the right way. She ties her hair up at night but if her ponytail isn’t sitting right she’ll have to do it again. And again.

She is scared of the dark (never used to be) and insists on sleeping with lights on. We got some red lighting which is supposed to be more calming but she won’t use it. She used to insist on having the hall light on but that disturbed everyone else so we got her some fairy lights that stay on in her room. But although she wants lights on because she’s scared of the dark, she’s also then scared of the shadows the lights make in her room and can spend ages asking what’s that shape, that dark bit never used to be there, I’m sure I saw something move etc. She is also scared of any noise if she doesn’t know what it is. She has a white noise machine that we put on for her at night so I guess that blocks out some sounds but not everything. Some noises we can explain, some we can’t. It doesn’t help that she often seems to need to process sounds visually as well, so if you tell her a noise is the cat jumping off a bed she’ll want to see the cat. For sounds I can’t hear or I don’t know what they are I just tell her I can’t explain every noise but she is safe and she doesn’t need to worry about them. I don’t really know if that’s a good enough answer but it’s all I’ve got! She needs constant reassurance.

As is the case with a lot of children, Katie seems to save any worries or issues she has had in the day to talk about at night. We have tried to pre-empt this a bit by asking if there is anything on her mind or anything she wants to talk about a couple of hours before bed, but this doesn’t really work. Bearing in mind we’ve also had it stressed to us how important it is for her to decompress and be left alone if she wants to after school, it’s pretty hard to find a sensible time to offer that conversation. 99% of the time she doesn’t want to talk and I’m not going to force her. Also I’ve found that on the rare occasion she does want to talk about an issue during the day, she will still want to go through it again at bedtime anyway so it doesn’t really help in terms of saving time or making bedtime easier.

Every now and again there’s a curve ball thrown in to the mix as well and on top of all the usual fears there will be something else very specific e.g. she saw a spider, or she’s scared of ghosts, or she doesn’t think she drank enough that day so she’s scared she’s going to die.

A recurring fear that doesn’t happen every night but does crop up fairly often is a fear of being sick. I’ve tried so many ways to help Katie through this one but I’m out of ideas.

  • Just talking to her and reasoning with her isn’t very effective. We talk about how she’s generally really healthy and not at all likely to be sick, that feeling sick doesn’t always mean it’s going to happen, and if she is sick we would stay with her and look after her. We end up going round and round in circles and I’m not sure how well Katie processes a load of verbal information.
  • I’ve also drawn her a flow chart with different outcomes e.g. I feel sick so I can try and make myself feel better by taking deep breaths / having a drink / thinking of something else etc. If I am sick Mummy and Daddy will hold my hair back / sleep on my floor / get me a bowl / give me hugs etc. If I’m scared I can remember it’s not likely to happen / it doesn’t last long / I will be OK etc. It didn’t really make any difference and she still keeps saying she’s scared.
  • We bought her a worry monster that she saw and asked for. The idea is that you write down the things you’re worried about and give them to the monster, either to get rid of them or to talk about at some point. But once she asked for it she never really used it. She told me she felt bad giving the things she was scared of to something else (and we’re told autistic people have no empathy. Katie has loads of it just not always in the situations you’d expect).
  • I try giving evidence. We’ve sat and worked out how many days Katie has been alive vs roughly how many times she has actually been sick and it works out as something like 0.1%
  • I’ve tried acknowledging the fear – it’s not nice to be worried about being sick and we know it’s a horrible feeling when it happens
  • And there’s just the suggestion of go to sleep because then you can’t feel sick!

Nothing really seems to reassure her or make much difference. There are loads of times when I feel like she’s calming down but then she’ll say ‘but I’m still scared’ and I could just cry. We tend to eventually just get to the point where she’s tired enough that she goes to sleep but the next time she’s worrying about being sick we’ll end up going through the whole process again.

I have friends who when their children were babies and toddlers used to sit in their bedrooms with them until they went to sleep, and I used to feel sorry for them because we’d never had to do that. We just said goodnight and went downstairs to spend the evening together…until Katie started freaking out if she was left on her own to go to sleep. One of us now sits in with her every night. She used to go to bed at about 8/8.30 but she’d take so long to get to sleep that most nights one of us would spend all evening in her room and me and John ended up never talking to each other apart from a brief conversation when he got home from work. Now she goes to bed at 10, which I partly feel is too late for a 9 year old but it’s given us our evenings back and she goes to sleep a lot quicker now. I guess because she’s more tired she’s more likely to get to sleep instead of worrying about everything. It’s still not ideal though and I do worry she’s not getting enough sleep, although to be fair I think I’m usually more tired than she is!

If Katie wakes up in the night it means she wakes us up too. She still won’t go to the toilet on her own if she needs a wee in the night. She will get us up and we’ll just stand half asleep in the bathroom doorway while she sorts herself out. There’s literally no point in either of us being there, except that it reassures Katie so I suppose that is the whole point. If she wakes up because she’s had a bad dream or she’s scared then we’re screwed and there’s no getting her back in her room. It just ends up in conversations that go nowhere while Katie isn’t comforted by anything and we’re not as patient as we could be at 2am or whatever time she’s woken us up.

As an example the other night she got up because she was scared someone was in the house. We reassured her there wasn’t anyone there because we lock the doors and shut the windows. “But I’m scared”. We told her to listen for any sounds because she would realise there weren’t any because no one was creeping around. “But I’m scared”. I asked her if she wanted to come downstairs with me so she could see for herself that there was no one there, but she was too scared to in case there was someone! So John went downstairs and then came back up to promise her there was no one there. “But there might be”. At which point there’s not much else we can do, it’s either a case of being up for who knows how long in the middle of the night trying to reassure her and getting nowhere, or offering her to sleep in our room because at least then she will actually go back to sleep.

I don’t know if all this is a result of anxiety, a need to be in control, some elements of OCD, something else? For us as a couple it’s unbelievably frustrating. It impacts our relationship, our mood, our ability to socialise. But I’m assuming it’s hardly a barrel of laughs for Katie either. I know some people think we’ve given in to her and we should never have let it get this complicated. We should have been firmer with her and not let her have her own way. Maybe that’s right, but it’s not like she’s sitting there laughing to herself that she’s got us under her thumb and she’s in control. There are many nights that she’s in tears, there are a handful of nights where she’s in full on meltdown mode, and even the nights that go ‘ok’ where we just have to answer all her questions and stay in her room but she doesn’t freak out about anything there is still that desperation on her part to have everything exactly right and to be in control of the situation, which must be mentally exhausting.

On a practical note I’m not really sure what being firmer with her would entail. She’s 9 years old. We can’t just tell her to go to sleep – if it was that easy we wouldn’t be in this situation in the first place. I would feel awful putting a time limit on her and saying something like she’s got 10 minutes to talk to us and then that’s it and she has to go to bed regardless. All that tells her is we’re only interested in listening to her when it suits us or that her worries only matter up to a certain point and then we can’t be bothered to help her anymore. We can’t just walk away from her and leave her to it. She will get out of bed and follow us! What are we meant to do, pin her to her bed? Lock her in her room and head to bed ourselves? Give her consequences for not going to bed? Be asleep in the next half an hour or we’ll cancel your friend coming over. What would any of that do other than give her the message that we don’t actually care why she’s scared or why bedtime is so hard for her, or that we don’t believe her and think she’s faking it all.

I don’t have the answer (clearly, as bedtime is so rubbish!) so I suppose for now I’m just hoping that the fact we’re answering her questions, we’re trying to help her feel safe, we’re doing what she needs / wants / demands (delete as appropriate) is enough and that she will come to realise she’s OK.

A camping experience

Last week we took the kiddies camping for 3 nights, staying in a field on a farm site in East Sussex. For the most part we had a really fun time, and the small people have all decreed that they would like to do it again. Hurrah!

The good bits:

We involved all the kids in planning what we would be doing. They all came and looked at the website of where we were staying and we checked various local attractions and asked them which ones they liked the look of. As with most things though, Alice and Matthew were interested up to a point and gave their opinions but didn’t really mind too much as they were just excited to be going away and weren’t that fussed about what we actually did. What we ended up planning was pretty much down to Katie. She loves animals and was adamant that we should go to a local animal sanctuary, and all the kids wanted to go to a zoo/theme park attraction. So I think that was a big plus for her, that she’d chosen what we’d do on both days.

Katie loved the big open field we were in and was more than happy to go wondering off on her own, which intrigued me. At home she is extremely clingy and doesn’t even like to be in her bedroom on her own most of the time. If she’s upstairs and the rest of us are downstairs she will usually panic and come downstairs as well. It’s a bit of a catch-22 for her because she doesn’t always want to be with us but she’s often scared to be on her own. The compromise is that she spends a lot of her time in the conservatory so she’s with us but not too with us! Whereas when we were camping she didn’t think twice about just going off on her own to the toilet which was up the other end of the field, or heading off to see the farm animals in the neighbouring field. It was really lovely seeing her having a bit more confidence to do that.

She also got stuck in and enjoyed the practical side of things. She’s not one for imaginative play and is often the odd one out of the kids, because Alice and Matthew spend a lot of time together playing with their toys and Katie isn’t really interested in that. She liked camping because she enjoyed the jobs involved. She helped John put the tent up by nailing in the pegs etc, she went off and did the washing up for us, went to the tap and filled up the water bottles etc. We spent our downtime playing cards or boules etc, so no imagination needed!

We partly picked where we were staying because it was on a farm and the kids were allowed to visit and feed the animals in the mornings, which we knew Katie would love. She was desperate to get there each morning and went off to go and chat to the goats, chickens, pigs, donkeys and ponies. I had to drag her away again, whereas in contrast Alice went the first morning and didn’t bother on the other two days. She’s not that interested in animals and would rather spend her time cartwheeling and doing handstands round the field. The animal sanctuary we visited was also a really nice day out and Katie was in her element there. The other two enjoyed it as well, but probably would have been happy to walk round once and then leave it there. Luckily there was also a park there so they played in that at the end while Katie went off to go and visit the goats again! She is noticeably happier when she’s doing things that involve animals.

Our other day out was a zoo/theme park which all the kids were excited to go to. I can’t work Katie out on this because she doesn’t like too many people or too much noise and her balance is a bit off kilter so she’s never liked being thrown up in the air or swung upside down like most kids do. And yet she’s always really liked theme parks, which I would have thought would be her worst nightmare! But she was happy as larry all day and we had a really fun day out.

John has family in Hastings and we went to go and see them before we went home. We hadn’t seen them in a couple of years due to living quite far from them anyway plus covid restrictions, and we weren’t sure what Katie would make of spending the day with them straight off the back of a camping trip where she had already been outside of her usual routine and comforts. There were the 5 of us, plus John’s aunt and uncle, two cousins and their other halves, and two children. It was rainy so it meant quite a lot of people in the house, and we know people + not much space + noise isn’t a good combination for Katie. So we talked with Katie beforehand about the things she could do if she was finding it all a bit much, and we spoke to John’s family as well as they weren’t aware of her diagnosis having not seen us for a while. Katie managed it really well and she did spend time with us but also disappeared off into the garden (in the rain) and spent some time watching YouTube on John’s phone.

The not so good bits:

Katie was excited to be camping but I was a bit nervous about it given that her bedtimes can be really hard (that’s a whole different post!) so I wasn’t sure how we’d get on all in a tent together. An important thing with Katie is being in control and knowing what to expect so as far as possible we went through what would be happening. John has camped with the girls in the school field before for various fundraisers school has done, and we also bought a new tent for this trip and did a trial run camping in my mum’s garden for a night. Both those times she was OK going to bed so we hoped it would be the same this time round. We have an 8 person tent so it has a bigger section in the middle and two smaller compartments at each end. Alice and Matthew slept in one end together, and we talked to Katie beforehand about whether she wanted to have one of us in the other end with her or whether she would rather have it to herself as her space and me and John would both sleep in the middle section. She wanted to have an end to herself but with the zip left open, so that was fine and it seemed like we’d planned as well as we could. One thing I guess we overlooked though was that she is familiar with the school field and my mum’s garden, whereas she had never been to this campsite before. The first night didn’t go too well. She changed her mind and didn’t want to be on her own, so John went in and slept right next to her but she freaked out about every shadow and every noise, was scared of the dark, and thought that someone was going to come into the tent and kill us all. These fears escalated and she had a full blown meltdown when the rest of the campsite was silent and everyone was trying to go to sleep. She did eventually calm down, and she was fine the second and third nights so I’m not sure if it was just a case of getting the first night out the way or quite what was going on. On a future trip we may need to prepare her a bit better, but I’m not sure what else we would do and I don’t think Katie is sure either. She doesn’t tend to be very forthcoming with suggestions as to what would make things easier for her – it’s usually me saying what about xyz and her saying yes or no which maybe isn’t the most effective way of doing things but I don’t have another one at the moment!

I think Katie also found it quite difficult that we were all on top of each other and she didn’t have her own space to escape to. She usually spends a fair amount of her time each day on her own (her choice) which she couldn’t really do while we were away, other than the times she went off round the field – maybe that’s why she was happy to go off on her own while we were away compared to how reluctant she is to do that at home. But there were certainly times that she was very argumentative and appeared to be being difficult just for the sake of it, whereas I’m sure for her it was a case of feeling overloaded and not really knowing what to do about it. She certainly had fewer ways to regulate herself. We did bring some fiddle toys, headphones and her tablet but we only had limited times we could charge the tablet and obviously we couldn’t bring half the house with us so craft things etc had to be left at home. She also missed her guinea pigs!

This has turned into another post about Katie but she is the child that we focus on most of the time. There is so much more planning ahead and thinking of contingencies with her because she needs it and the other two don’t. To be honest I don’t think Alice and Matthew would have cared what we did while we were away. For them it was just a novelty to be in a tent and doing something different. They weren’t scared of the noises and the dark and it doesn’t affect them not to have all their usual toys around them or be out of routine. They probably would have had a good time regardless of where we went and they were happy to see John’s family because they had two more children to play with. We don’t have to pre-empt meltdowns and think about triggers for them. Overall I’m happy we had a fun trip together and for the most part it went well for Katie as well. There will be more camping trips in the future and I suppose as with anything we’ll keep watching Katie and talking to her to learn as we go and find the best ways to manage things for her and with her.

About Alice

Alice just keeps improving with age. She wasn’t a happy baby but the second she could move around a bit more for herself she started cheering up. It’s like being a baby just didn’t suit her and she was in a hurry to grow. Her jumperoo was a lifesaver from when she was about 3 months old and couldn’t sit up yet, but could quite happily be propped upright in there. The sense of glee on her face when she managed to pull herself up to standing and reach things she’d not been able to before was brilliant. Once she started crawling at 7 months she was a little tearaway, speeding around all over the place. I thought she’d be quick to walk, but she wasn’t really. She took her first steps at her first birthday party but still didn’t really walk properly for another month or so after that because she was so much faster when she was crawling so she stuck to that for a while. She was also obsessed with climbing. Everything. All the time. She was the one I couldn’t take my eyes off because if I did she’d be up on the table, up the stairs, trying to climb shelves etc.

Her enjoyment of moving hasn’t stopped as she’s got older. She does gymnastics classes each week and absolutely loves them. She seems pretty naturally bendy. As a toddler she’d sit in her high chair with her legs up around her ears for pretty much every meal as her default position. She can do the splits with no effort at all. She doesn’t like walking, even the 10 minute walk to school. She just seems to find it boring, whereas if she can scoot or ride her bike somewhere she’s all for it. If she wants to learn something physical she’ll spend ages persevering until she can do it whether it’s skipping, cartwheeling, doing handstands etc. She got a pogo stick for her birthday last year and spent literally all day getting her balance and seeing how many bounces she could do, then trying to beat her total, then trying to beat it again. She gave herself blisters on the insides of her legs because she’d bounced up and down so much she wore the skin off.

Alice is a real girly girl. Her favourite books are ones about fairies. She loves unicorns and mermaids and spends ages playing with her mermaids in the bath. She has lots of dolls that she plays mums and babies with, and lots of barbies and polly pockets that she role plays with. She was really excited to get a dolls house this year. All her friends at school are girls and she’s really not interested in the boys. It surprises me sometimes because physically she can definitely keep up with the boys, and at home her and Matthew are a real pair and play together a lot, but she never mentions the boys at school! Her birthday parties are very girly affairs, the last one involving ‘Sparkle the Unicorn Fairy’.

For someone who can stick at tasks she’s interested in for ages, she also has zero attention span for things she’s not so interested in! Katie and John can spend hours in the garden together, and Alice will usually join in for about 10 minutes and then get bored. Katie is the practical one and Alice is the imaginative one. She would much rather be swinging from something or playing a game than doing jobs.

Alice is a sociable little miss. She loved preschool and she loves school. She has a more the merrier attitude so she likes surrounding herself with people and having kids her age to play with. She seems to make friends quite easily and will happily chat to anyone. For the most part she takes life in her stride and seems pretty happy with her lot. When she was younger we joked that by having Matthew we were turning Alice into the awkward middle child, but so far she’s anything but that. She probably does get the least attention because Katie naturally demands more of it, and Matthew being the youngest has needed more by default as a baby and a toddler, and Alice gets what’s left. But she just goes with the flow, and we do make sure she gets one to one time with me or John when we can.

In terms of her attitude to school and friendships Alice is the one of the three of them that I relate to the most. She likes learning, it’s never a problem to get her to do her homework, she has friends, and she enjoys school, which is how I was when I was younger. John says he used to spend the holidays worrying about going back to school and used to stress about school trips, which is the opposite of me. I used to spend the holidays looking forward to going back to school and was excited for school trips, which is the same as Alice now. She has found the coronavirus lockdowns really hard going because we’re just not enough for her day in day out. She has been desperate to see her friends again and not just Mummy, Daddy, Katie, Matthew all day every day.

Alice is a funny one when it comes to animals. When she was very little she used to love pretending to be a dog and used to get us to throw things for her to go and fetch, and I thought she’d love animals but she really doesn’t! She’s scared of dogs, especially small energetic ones, and can really freak out if they come too close to her. I’m not sure where that’s come from as she’s not had any bad experiences with dogs. If we go to farm parks or anywhere like that she’s really not too interested in the animals and would rather play in the park or the soft play area. She’s quite hesitant to feed the animals and will just watch the others doing it. She even gets nervous around Fred sometimes even though he’s been our cat since before she was born and she’s never known life without him – and he’s really good with kids and doesn’t scratch or bite them. It’s weird because she’s so fearless in so many other areas but is so unsure of herself around animals.

For the most part Alice is a little ball of energy and spends her time skipping, swinging, jumping, whizzing around, but then she has funny little dips. She is the one who will get run down and catch a virus / spike a temperature / come out in a rash. Sometimes she gets dry patches round her mouth or her eyes will puff up for no apparent reason. She eats the best diet out of the three and loves fruit and vegetables, but she’s also the one who will get constipated. When the kids had chicken pox Katie and Matthew had the expected spots but Alice did it in style and was absolutely covered all over in angry looking spots and scabs. But thankfully it all tends to be short term and then she’s quickly back to running around full pelt.

Alice’s smile is fabulous. She doesn’t just smile – that grin is stretched all the way across her face, her dimples pop and her face literally lights up. She definitely wears her emotions on her sleeve. As a toddler she was grinning and laughing or howling with rage and there really wasn’t much in between. As she’s grown up a bit there is more of a middle ground but definitely when she’s in a bad mood you can practically see the thunder cloud hanging over her head and when she’s happy she’s almost radiating it. Her pride in herself when she achieves something is lovely too. She owns it and can’t wait to tell anyone she sees when she’s gone up a reading level or up to the next swimming class.

She’s a good egg.

CAMHS

Nadine Dorries has been causing a bit of a stir on twitter at the moment. Following her tweet that “CAMHS is well resourced and robust” many parents shared their stories of their own experiences of CAMHS which suggest anything but a well resourced and robust service. Nadine also tweeted “we lead the world in the delivery of [mental health] services” and “we are not in the middle of a MH crisis”.

Mine is just one point of view and may not echo the experiences other families have had, but sadly I think it does. From where I’m sat these statements are so unbelievably out of touch and inaccurate, especially coming from the Minister of State for Mental Health, Suicide Prevention and Patient Safety of the United Kingdom (there’s a job title and a half!). How can she possibly do anywhere near a good enough job if her head is buried so far in the sand that she is arrogant enough to state that we lead the world in the delivery of mental health services?

There are just a couple of articles of other people’s experiences here and here

We actually haven’t had much interaction with CAMHS which I’m becoming increasingly glad about, but here is our experience of this robust and world leading service:

First of all there was the fact that we couldn’t even get a foot in the door to get Katie assessed for autism because CAMHS massively over emphasizes input from professionals over parents. Our GP was supportive and felt that Katie should be referred for assessment, but her school was not. They said there was no evidence and they wouldn’t be involved in a referral. Obviously it wasn’t directly CAMHS’s fault that school were so unhelpful but it wouldn’t have been such a problem if CAMHS put a bit more weight on parents’ opinions in the first place. We were told we could self refer but because we didn’t have support from school we would be at the bottom of the pecking order and Katie probably wouldn’t get offered an assessment. The GP also backed out and said they couldn’t support a referral if school wouldn’t. So that door closed fairly quickly thanks to the feeling among the powers that be that they are best placed to refer or not refer a child and the concerns of the parents don’t really count.

Let’s say school had put in a referral for us – the waiting list at that time just to get an assessment was 2 years. This was pre covid and I’ve since heard that it’s more like a 3 year wait now, although I don’t know how accurate that is. There is no reason to assume it wouldn’t still be at least 2 years though. Let that just sink in for a minute. CAMHS stands for Child and Adolescent Mental Health Service – this is children and teenagers we’re talking about, and we’re expecting them to wait 2 years just to get an initial assessment never mind any support. When I had post natal depression after having Alice I had access to the GP, the heath visitor, and various mum support groups. I had options available to me. I tried the support groups first and when I found they weren’t really helping I went back to the GP who prescribed me medication straight away. Why do children not have the same access to support and help? Why aren’t children and their families believed and instead a bunch of authority figures are required to get involved? When I had PND no one asked for reports from my husband or my employer or expected them to provide evidence that yes I actually did need help. Children are already struggling when they get to the point that a CAMHS referral is needed, so to expect them to wait for another 2 years is shocking. I would have been beside myself as an adult if having reached out to my GP about how I was feeling he had told me to stick it out for 2 years and see how I got on.

In our case we were fortunate to have the money for a private assessment which led to Katie’s autism diagnosis and the process took a couple of months. If we’d have gone on the CAMHS waiting list in March 2020 like we requested, we would likely be looking at another 8 months wait to be seen. As it is she was diagnosed in October 2020 so we’ve had the last 9 months to learn about autism and access some support for Katie. The amount I’ve learned in those months has been invaluable, and it’s horrible to think of all that time that could have been wasted if we were still hanging around waiting for CAMHS.

At the start of this year Katie was struggling big time with school and the various lockdowns, and she started self harming and expressing very negative views about herself including that she deserved to feel pain, everyone should hate her, she didn’t know why she had been born just to be unhappy, and she wanted to die. I filled in a referral form with the Emotional Health Academy, but on their form it also said that if the child was already self harming then CAMHS should be contacted…so I did what they said and contacted them. CAMHS did phone me back to be fair, but their advice was non existent. They told me to contact the Emotional Health Academy and when I pointed out that I already had and that the EHA’s advice was to contact CAMHS, they didn’t seem to have anything to say and just told me again that the EHA would deal with me and I should wait to hear from them. The guy I spoke to was completely dismissive and said I should encourage Katie to scream out loud to release her emotions, followed by a ‘joke’ about how she’d best do it into a pillow and not out loud as we wouldn’t want to disturb the neighbours. We were well beyond the point of screaming into a pillow at that time. He also told me to hide the knives.

Much fun as it was to be bounced between CAMHS and the EHA while no one actually did anything, I also spoke to the GP who said that yes Katie should be seen by CAMHS and she put in an urgent referral for us. They wrote back to say that Katie didn’t meet the criteria for CAMHS intervention and she would be most appropriately helped by services accessed via her school. Yep, the same school that also insisted Katie wasn’t autistic, said she didn’t need the assessment, and didn’t even acknowledge it when I contacted them to say that she was self harming. I’m not entirely sure who does meet the criteria for CAMHS intervention. Presumably you need to be at the point where you’re actively trying to kill yourself rather than just hurt yourself. CAMHS also suggested that I speak to the school SENCO (which I had already done repeatedly) and yet again suggested that I refer Katie to the EHA (which I had already done and made them aware of that fact). They ended their letter by informing me that they would be closing the referral.

So that was our first official dealing with CAMHS and it got us precisely nowhere. All we got was snarky comments, advice to try things that we’d already tried, and case closed. I went back to the GP who went back to CAMHS on my behalf. This time the letter I received from them said that “CAMHS will contact the family as a routine triage to explore what support has been accessed”. Firstly, what is routine about an 8 year old hurting herself and saying she wants to die? Secondly that letter was sent in February and no one from CAMHS has contacted me since then.

The Emotional Health Academy was only marginally better and that’s not saying much. They put me on a waiting list for a parenting course which is starting next month, so that was a 5 month wait. Maybe I’m taking it a bit personally but I don’t think a parenting course is really going to help my child. Where are the services that support Katie directly? I’m not for a moment saying I’m a perfect parent and I’m more than happy to do courses. I’m the first to admit I knew next to nothing about autism and it’s been a steep learning curve. I have completed courses on autism and anxiety, I have read books and blogs, I’ve joined groups on social media which are run by autistic people to educate others, and I’m happy to do it because I think it’s relevant and necessary. But I don’t think an appropriate response for a self harming child is to wait 5 months and then stick the parent on a course.

Thankfully Katie is no longer self harming but I’m very aware that it’s something that might happen again in the future and the scary thing is I don’t feel any better equipped to help her through it and I have no idea where I would turn for advice. It’s certainly not forthcoming from CAMHS. We ended up paying privately for Katie to see a therapist. We are moving her to a new school where she will hopefully have more support systems in place. We are continuing to learn and adapt at home. We also found a local charity that runs a youth group for autistic children and were also offering a well being course at the time that Katie was really struggling. Again we are fortunate to be able to afford to pay for therapy, and the charity is just something we’re really lucky that I came across when I was researching things that could help. At no point was it highlighted to us by CAMHS.

If CAMHS is some trailblazing service leading the way for the world then we’re all in trouble. My perception of them is that they are underfunded and under resourced. If they are as well resourced and robust as Nadine Dorries believes, that just makes them negligent.

Moving on

We have come to the end of the last full week of term for the 2020/21 academic year. It’s felt like a big week for each of the kids.

Katie has been invited to a friend’s sleepover and is there now. She came out of school absolutely beaming the other day because she had been invited over with 3 other girls from her class, and desperately wanted to be able to go. She was so excited! Having been told yes she could go her anxiety kicked in and she wanted to know every tiny detail of what was going to happen – what would they be doing, would she be able to sleep with the lights on but not have the others know it was her that wanted them on, what would they eat, what would the sleeping arrangements be, what if she wanted to talk to me etc.

I asked Katie if it was OK for me to phone her friend’s mum so I could let her know how much she was looking forward to it but also give her the heads up on some of her worries and get some answers to some of them. I’m all for speaking up about Katie’s diagnosis if it helps people to understand her and makes situations less stressful for her, but I’m also mindful of the fact it’s Katie’s diagnosis not mine, and for now she is really reluctant to tell people about it. But on this occasion she said yes it was fine but only if I phoned the mum and we didn’t text. She didn’t want a conversation left on a phone that someone could read.

The friend’s mum was lovely. She listened and asked questions, and it was definitely reassuring for Katie to know that her worries were being taken seriously. Her friend’s mum is using a sleepover company who come and set up indoor teepees so she sent a photo of what they look like so Katie could see in advance. She promised lights on was no problem and also said she would be sleeping downstairs in a room next to the girls so she could be there if anyone needed anything. Katie was worried about the tents all being in a line and that she wouldn’t be able to see the others, so her friend’s mum said she would make sure they were set up in a 3 and a 2 opposite each other. She also said Katie didn’t have to talk to her in front of the others if she was worrying, she could just tap her on the leg or they could have their own signal so that she could talk to her in private if she wanted to. She has been sending me photos through the evening so far, including one of the other girls having a dance competition while she and Katie are the judges. I know Katie will have felt much too self conscious to dance so giving her a different role but keeping her involved is really helpful.

I’ve also done what I can at home to make the sleepover a bit easier for Katie.

  • We packed her bag together and she re-packed and moved things around a couple of times until she had everything exactly where she wanted it
  • She doesn’t like wearing pajamas and just sleeps in knickers at home. She gets very hot. We found the smallest, thinnest pair of shorts and vest top that we could and she tried them on and laid down in them to check that the label was ok, they weren’t scratchy, and she wasn’t too hot or uncomfortable
  • She has her fiddle toys with her
  • She wanted to take a couple of teddies but worried the others wouldn’t need teddies. I told her I bet they will, so she may be happy to take them out when she gets there, but if not she has packed them in her bag anyway so she knows they’re there with her
  • She always ties her hair up when she goes to bed and is particular about how tight it should be and where the ponytail should sit on her head, so I tied it up for her before she left
  • She knows I’m keeping my phone on and I will answer any time if she needs to call / will come and pick her up if she needs me to
  • We have no plans for tomorrow. She can come home and flake

I would describe myself as a bit of a worrier but nowhere near on Katie’s scale. When I was younger I just looked forward to sleepovers and would head off without a second thought. I hope she is having a good time and can keep hold of the excitement she felt initially.

This is also the end of her last full week at her current school before she moves on to her new school. The Inclusion Lead at her current school, who I’ve had so many issues with and found to be so obstructive about everything, is now on maternity leave. Since she’s been gone and I’ve been dealing with a different member of the SEN team Katie has actually had regular ELSA sessions or been told in advance if they’ve needed to be rescheduled. She has had the same member of staff each time (albeit it’s only been for the last 4 or 5 weeks of term) and today she came home with a note:

“Dear Katie, I have really enjoyed working with you this term. Thank you for being you. I will miss you at Falkland but know you will have a fabulous time in your new school. I am giving you a special stone to help you with the move to your new school. Keep it in your pocket on your first day and give it a rub whenever you feel you need to. It would be lovely to hear from you and how you are getting on in your new school. With love, Miss C x”

It makes such a difference to have people like Miss C and her friend’s mum who are positive and who listen to what Katie needs. It makes me wonder if we’d been dealing with Miss C from the start would we not have ended up finding Katie a new school.

There’s not too much to say about Alice at the moment. She has the least amount of change coming up out of the three of them, but this is her final year as an infant and when she goes back to school in September she will be in the juniors (year 3). She’s growing up! She’s had a lovely end of year report from her teachers and for the most part is really happy at school, but one of her best friends is moving away in a couple of weeks and she will definitely miss her a lot and find it strange going back to school without her. It’s also in the back of my mind that year 3 is when Katie really started to struggle and I hope we don’t see the same for Alice – but they are very different children and there is no reason to think that Alice would struggle just because Katie did.

Matthew has two more days left at preschool and then he leaves because he will be starting school in September. I love love love his preschool. All three of our children have gone there, and all three of them have been really happy there. When I first went back to work we used to send Matthew to a childminder a couple of days a week. He either cried when I dropped him off or just put up with being there. When we visited his preschool he loved it straight away and from the first day he walked straight in and never looked back. I’ve never had to send him in crying or felt guilty for leaving him there. The girls were the same, and they all looked forward to their preschool days. It’s what you want for your children – they have felt safe and encouraged while they’re there and they have been able to learn through play. I’m talking about school in a positive way to Matthew but actually I’m really quite sad that he’s coming to the end of his preschool days. It’s like this lovely little cocoon where everything is so exciting and they can be themselves and they’re encouraged with everything they do. The plus side for school is that we know Matthew’s teacher as she taught Katie as well. She’s really nice and she waves at Matthew every day when we’re at school picking the girls up, which he loves.

This definitely feels like a summer of transition. The small people are all growing up, moving on and becoming slightly less small!

About Katie

Pretty much everything I’ve written so far has been about the things Katie finds hard in life – that’s just because that’s been a focus of our lives at the moment while she’s been going through a tough time, and we’ve been doing battle with school and applying to her new school. She has a giant personality and there is lots that I haven’t written about.

Katie is my mini adult. She is in a big old rush to grow up (until anyone mentions getting a job or leaving home). I often call her mummy number two as she loves to look after Matthew (although more so when he was smaller than now, unless he’s in the mood for her to baby him and then she’s all over him again!) She was 4 when he was born and was always fetching nappies or clothes, pushing him in his buggy, trying to entertain him if he was crying in the car or bouncing him in his baby chair. These days she likes to read him his bedtime story or give him his inhaler. She also likes to spend time with adults and help with ‘projects’ or what she thinks are grown up things. She will happily do the washing up, or keep John company on a tip run, feed the cat or help paint a fence. In many ways she likes being the oldest of the three. There was no sadness when she learned that Father Christmas and the tooth fairy weren’t real, just excitement that she was now a big girl and in on the secret. She is brilliant at still pretending for the other two and thinks it’s hilarious when I mention anything about Father Christmas to give me the LOOK to show me that she hasn’t forgotten it’s all pretend. She has recently turned 9 and the pre-teen tendencies are already rearing their head. She likes long soaky bubble baths, experimenting with makeup and is already pestering us to let her get her ears pierced and get a mobile phone. Her bedroom is already so messy it’s a bit of a health hazard and I dread to think what it will be like by the time she’s a teenager.

Katie is my green fingered girl. Since she was tiny she has loved being out in the garden. She doesn’t care if she’s planting vegetables, pulling up weeds or clearing leaves – anything will do. She doesn’t get bored of it and will happily spend all day out there. John often comes in laughing about the conversations she has with the plants, keeping up a constant stream of chatter while she’s working with them. I’m pretty sure she prefers plants to people because she can say what she likes and they don’t answer back. School used to offer a gardening club once a week during term time which Katie did for a few years (pre covid. It’s not been running since March 2020). I loved picking her up and seeing her working in their eco garden, pottering around and looking totally at ease. In the first year that she went to gardening club she won the school’s eco award because of her enthusiasm. A couple of years ago she went with some of the other gardening kids to go to the local garden centre to choose the school’s Xmas tree and then plant it. She was soooo excited to be chosen and it was such a lovely thing to happen as it boosted her self esteem as well.

Katie is an all weather girl. As soon as there’s a hint of autumn being on the way she’s getting excited about winter and the possibility of snow. All the kids get excited when it snows and we’ll pile on gloves and hats etc and get the sledge out, but the reality is that the other two are cold and soggy and whingy after about 15 minutes and want to go inside for a hot chocolate. Katie would stay out indefinitely. She doesn’t seem to feel the cold and will be rolling around making snow angels, building snowmen, sledging, trying to get the others to stay outside for a snowball fight, and bouncing on the trampoline and going on the slide because it’s more fun in the snow. When it rains she won’t just jump in puddles, she will take a running leap and make sure she lands hard enough that the puddle splashes up over the top of her wellies. I have videos of her gleefully pulling her wellies off and pouring all the water out of them, then putting them back on and soaking herself all over again. She never cares about her cold soggy trousers or wet and dirty socks. We went to Newquay last summer and the day we got there we popped down to the harbour quickly without having beach stuff, swim suits etc. Katie didn’t care at all. When the others were rolling their trousers up and just paddling she went in the water fully clothed and rolled around in the sand. She really doesn’t care what the weather is or how messy she ends up getting!

Katie is our little goof ball. Our nickname for her is Norbert because it just seems to suit her somehow. Good morning Norbert, that was a norby thing to do, love you Norb (it’s all said in an affectionate way!) For a girl who can carry an awful lot of anxiety and who can be very tense, she can also be very light hearted and enjoy just messing around. Parading downstairs in just her knickers and dancing around is quite a sight. Katie has no rhythm whatsoever so she will never try and dance ‘properly’, she will dance how she wants with limbs flying around all over the place, however she feels like it. She’s part of a children’s singing group locally and when they do performances there will usually be a minimal level of movement like stepping side to side or clicking fingers. Katie is always the one who is out of sync with the rest of them, who steps left instead of right or who is a beat behind but who has such a level of concentration on her face.

Katie is our chef. She likes cooking and we’ve got into the habit that when we do a shopping list she chooses a meal or a pudding that she wants to cook and then she’ll make it for us one day that week. She’s got a couple of really good beginners cook books and has done quite a few meals now. She’s happy getting on with it and doing it herself as long as one of us is in the kitchen just keeping a bit of an eye on things from the background. She usually does her meals on a Wednesday when I’m at work and John is home and it’s a nice thing for the two of them to do together. 

Katie has been a bookworm since she was tiny. She loved books from a way earlier age than the other two. We went to visit my sister in America when Katie was 4 months old and I took a load of books for the flight because even then she would spend ages looking at the pictures. It was a bit of a shock when Alice came along and I’d try and look at a book with her and she would just fling it on the floor or rip the pages! In other subjects at school Katie is where she should be age wise but in reading she’s always been ahead of her age. She’s always had at least 4 books on the go at any one time, mostly fiction but she does like The Guinness Book of World Records and she’s got one of 1000 animal facts that’s an old favourite. More recently this has fizzled out slightly but I think that’s because the horse obsession has taken over and at the moment she would rather watch You Tube tutorials on how to groom them etc than read about them. I also think that she’s so disillusioned with school that she doesn’t want to do anything associated with school at home, and for now that sometimes includes reading.

Katie is a generous little soul. When we’re on holiday she always wants to bring presents back for other people and she wants to help choose people’s birthday and Christmas presents. For John’s last birthday she insisted on getting him a little remote control car “because Daddy likes cars”. She kind of missed the fact that it was a kid’s toy and it was a cheap piece of tat really, but definitely one of those times that it’s the thought that counts! The other day she brought a book about fairies home from the school library and gave it to Alice to read because she knows Alice likes fairies, and when school had a book sale she didn’t buy anything for herself but brought a pop up monkey book for Matthew. 

Katie loves a good crafting session. This is an area that she and I are totally incompatible. I hate making things. I can barely even put a Kinder Egg toy together never mind help with 9 year old crafting activities. Glitter is the bane of my life and anything involving glue makes me cringe. Katie loves all that! Pre Covid I used to take the kids to a messy craft session at a local church hall which was held once a month and they got to make play dough and get their glitter fix and use all the stuff I don’t like. Katie also likes knitting. I don’t have a clue how to knit but my mum (Grandma) and John’s mum (Granny) can both help her, and she used to do knitting club once a week at school but that’s another thing that’s stopped for now because of Covid. Looks like I’ll have to put my hatred of all things crafty aside for a while and do more at home!

Katie’s ultimate love at the moment is animals, especially horses. As a toddler she was always so sweet to our cats. She never went chasing after them or pulled at their whiskers or tails. She never needed ‘teaching’ to be nice to them; she just was. She spent a long time asking us if she could have her own guinea pigs and eventually we said yes and got her two guinea pigs for Christmas – on the condition that they are 100% hers which also means cleaning them out, feeding them and changing their water. She looks after them pretty well and when she gets home from school she heads straight to the playroom to give them a snack. Getting her out the door is a bit of a nightmare as any time we go anywhere it takes her ages to go and fuss over the guinea pigs and say goodbye to them. Her favourite animal is horses. She was desperate for riding lessons and had to wait a long time for covid restrictions to lift a bit but now goes once a week, plus for pony days and stable management days in the holidays. She would live at her riding school if she could. She looks forward to every Sunday and spends most of her spare time on horsey things. It’s really lovely to see how happy it makes her and if her interest in animals stays as strong as it is now I hope she will be pretty fulfilled in later life if she can get a job that involves being with them.

Spare the rod spoil the child

There are a few things recently that I’ve mentioned in passing to friends or family of decisions we’ve made with Katie which have had a bit of a mixed reaction. I think sometimes me and John can struggle with how we parent her because we are bringing her up in a different way to how we were brought up by our parents and it can be a challenge to adapt our thinking.

There is evidence to suggest that autism may be genetic. From what I’ve read there are many adults who through their own child’s diagnosis come to realise that actually they are autistic themselves. This has not at all been the case for me. I knew very little about autism before Katie’s diagnosis and it has definitely been a journey of discovery, but not because it has helped me learn more about myself. The more I learn about autism the more eye opening it is. I’m learning an alternative view of the world and ways of processing information I wouldn’t ever have considered, and it fascinates me and baffles me. I think I’m about as neurotypical as you get. I think John would also describe himself as neurotypical, and certainly he finds it difficult to understand some of Katie’s reactions to things, which suggests he can’t identify with them himself. I would say we were both also brought up in a very ‘neurotypical’ way – respect your parents, do what you’re told, if you misbehave there are consequences. For me as a child this was fine. I was happy and I can’t fault my mum in her parenting decisions. They suited me and worked well on me for want of a better way to put it.

This way of parenting just doesn’t work with Katie. It confuses her and she ends up being very unsettled and angry. She doesn’t respect people just because they’re her parents / teachers / they’re an adult, she respects people if she feels they’ve earned it. She finds it very hard to do as she’s told unless she’s given a valid reason for it. If she asks for something and is told no she needs a reason behind the decision. Sometimes when she seems to be misbehaving, she’s really not. This is mainly to do with communication. She can come across as rude or annoyed when she isn’t, she is just very literal and doesn’t sugar coat things and she also finds it hard or impossible to notice the tone of her voice. She is also very anxious. Obviously being autistic doesn’t automatically mean you’re going to struggle with anxiety, and people can have anxiety without being autistic, but for Katie I think her anxiety is linked to feeling different and worrying that she’s done something wrong without always knowing how or why she has annoyed someone. My parenting with Katie is becoming much more about trying to make sure she’s at ease within herself and much less about discipline, but there is a bit of an internal struggle there sometimes that this doesn’t always match people’s expectations of what parenting should look like, or that we’re too lenient. I’ve given a couple of examples below.

Eating at the table

I’ve mentioned before that Katie doesn’t usually eat meals with us. She doesn’t want to sit and have a chat around the table and she doesn’t like the sounds of everyone chewing, breathing, cutlery on plates etc. The rest of us do still sit together because there’s no reason not to and those things don’t bother anyone else. So our approach with Katie is that if she wants to sit and eat with us she’s always welcome and we like to have her there. If she doesn’t feel like she’s able to that’s fine as well and she can take herself off to the playroom and eat on her own.

We find that Katie is much more likely to eat breakfast at the table with Alice and Matthew, but she hardly ever eats with us at dinner. I assume this is because she’s less stressed at the start of the day, whereas by dinner time she’s had a whole day of school or seeing friends or whatever it may be and she’s had enough and needs some quiet. It’s noticeable that when she does sit with us we can all just be together and it’s fine, because she’s chosen to be with us and can manage it. When we used to have everyone sat at the table for every meal because “that’s how it’s done” a lot of our meals were tetchy and argumentative because there were times Katie must have been struggling to be there and would constantly snap at everyone.

I have a friend who found her childhood quite tricky in some respects and has had issues along the way with her parents. As an adult she’s now being assessed for ADHD. We were talking about Katie not eating with us and her initial reaction was that she wished her parents would have done the same for her, very swiftly followed by “but there are some things we just have to do, and she’s got to learn to sit at a table”.

There is this idea that eating together round the table means quality family time. It doesn’t necessarily. For me, yes I like eating at a table with other people and I enjoy going out for meals. It’s nice to have a chat with people and sometimes eating together is the best time of day to stop other things and pay attention to each other. But it’s only quality time if it’s benefitting everyone and everyone wants to be there. It’s not quality time for Katie. What’s the point of forcing her to be in an environment that she finds stressful, that makes her irritable, and that gives her negative associations with food? There are a whole load of other ways to spend quality time with her where she’s a willing participant. She can spend time gardening with John, she can spend time showing me her favourite YouTube clips, we can play a board game together. As far as I can see the only real argument for everyone eating at the table is that it’s just more practical as the kids are dropping any mess onto the table rather than all over the house!

I’m also very conscious that Katie spends a huge amount of her time doing things she doesn’t want to do. I know this is true for anyone to some extent, but for me and John, for Alice and Matthew, and for most neurotypical people, the list of things we don’t want to do is a fraction of the size of the list for Katie. It’s also not always as simple as just not wanting to do something. Sometimes it will be because she’s 9 years old! But a lot of the time “I don’t want to’ is struggling with sensory overload and social difficulties on a daily basis. She already has to sit and eat her lunch in her classroom with 30 other kids 5 days a week. She comes with us if we go out for a meal and she can sit in a restaurant and manage OK and/or enjoy it, but she will most likely need to shut herself away afterwards. Home should be the place where she can be comfortable and do what she needs to do without being pressured or criticised. If that means taking herself away from a socially constructed idea that time around the table means quality family time that’s fine.

Sports day

Katie has always hated sports day. She spent most of her first school sports day in tears and wouldn’t join in with any of the races unless I did them with her. In year 1 and 2 she managed it on the day but there was a big build up to it at home beforehand with lots of worrying, talking about the races, how many people would be there etc. Last year sports day was cancelled because of covid, which I think Katie and I were both relieved about because she had moved into the juniors at that point so sports day would have been more competitive than previous years. It’s sprinting, hurdles and jumping rather than throw a beanbag into a hoop or do the egg and spoon race.

This year sports day went ahead but parents weren’t allowed to attend, again due to covid. I wondered if knowing that she wasn’t going to have an audience might help Katie but it didn’t. She was completely stressed out about it and couldn’t sleep just at the thought of the practice runs never mind the real thing. It was a bit of a no brainer for me and we told her she could take the day off school rather than do sports day. I just couldn’t see the point of making her attend.

I did get a couple of comments that it’s a slippery slope and if you let a child have the day off school just because they don’t want to do something it sets a bad precedent and they’ll be wanting the day off any time they don’t like something. Children need to learn resilience etc etc. I get that to a point but again this is more extreme than just “I don’t want to”. Every day Katie doesn’t want to go to school, but she still does. She doesn’t like PE full stop but she still does the lessons. She doesn’t like being in the playground but she still goes out there. She doesn’t like being surrounded by loads of other noisy kids but she still sits in a classroom that’s too loud for her. She’s an autistic child attending a mainstream school. She is already showing a stack load of resilience just by showing up every day. When there is an added stress on top of all the usual ones and she says it’s too much I’m not going to force it, especially when she has already struggled her way through three previous sports days.

If we had sent Katie to school for sports day this year I expect she would have had a meltdown or she would have shut down and not been able to take part anyway. She’s only ever had one full on meltdown at school before because she usually manages to keep a lid on things until she’s home or at least out the building. Afterwards she was embarrassed and she was worried about what everyone would think of her. She doesn’t want to stand out and she doesn’t want to feel like the ‘weird one.’ There’s no gain to forcing her into situations that make meltdowns more likely and damage her self esteem.

Being off school meant she got to spend the day with granny and grandad (John’s parents). She did some cooking, granny helped her with some knitting, she played, and she got some of the extra one to one time that she thrives on. Unless her feelings about sports day drastically change in the future I have no problem with her not taking part in any again.

Screen time

Katie gets a lot of screen time and that’s something that me and John have both struggled with a bit, especially John. We (people in general, not just us) are always hearing that too much screen time is bad for you, it limits your social skills, it makes you lazy etc. We used to put limits on the amount of screen time we allowed but now we don’t.

One pretty much unanimous piece of advice we’ve been given about supporting Katie as an autistic child is the importance of downtime or time to decompress. We have been told many times that when Katie comes home from school she needs no demands, no pressure, no questions…just time to do what she wants. For her this tends to mean shutting herself in the playroom with her guinea pigs and the laptop.

Sometimes yes Katie watches stuff on the laptop which serves no educational or social purpose. Don’t we all, that’s fine. Everyone needs to switch off and watch crap sometimes. But it’s so much more for her than mindless staring at a screen. She loves horses and she watches YouTube tutorials on how to check their health, how to groom them, how to tack up a horse, riding techniques… anything to do with horses. She has learned loads. The farm where she has her riding lessons is her happy place and she will sit and watch their YouTube video on loop with a smile on her face. She is also interested in animals in general so will also watch videos about caring for puppies and kittens etc.

Roblox is another interest for her and she spends a lot of time online playing that. There are a number of kids from school who video call each other and play together. It’s a much easier social situation for her than imaginary play at break time or face to face interactions. She doesn’t have to worry about body language or making conversation as they are all just playing and talking about the game and they all have a shared interest.

There is always something for people to worry and moan about. At the moment it’s screen time. For my parents’ generation it was probably “you spend too long on the phone.” Before that it was probably “you spend too much time with your head in a book” whereas now reading is encouraged. So I do worry a bit about the amount of screen time Katie has (and Alice and Matthew) but I’m not going to stop it. I also think it would be a bit hypocritical given how much time I spend looking on my phone. As with most people now my phone is my ‘go to’ for pretty much everything. I use it for social media, banking, reading articles, music, emails, arranging social stuff, ordering school lunches, photos, shopping etc. Whether we like it or not we live in an age of technology so as long as we’ve got parental controls in place and the kids aren’t watching inappropriate content that’s just how it is. They’re not about to turn into robots. They still like going to the park and swimming and bouncing on the trampoline and a bunch of other wholesome stuff!

Pregnancy and birth – Alice

After my two miscarriages in 2013 I was pretty sure I was pregnant again at the end of October and took a test with the idea of telling John on his birthday (31st October). It was negative, so that scuppered that plan. I was really surprised because that was my third (I thought) pregnancy in close succession and I was getting pretty familiar with the early symptoms. I was a bit gutted that the test was negative, but it was also John’s 30th and we were going away with friends for the weekend so I figured at least I could drink. And drink I did, and we had a great time, but my period still didn’t come so I did another test when we got home. It was another negative. I was quite upset as I’d just had my second miscarriage and we both wanted to try again for a successful pregnancy, but I seemed to be in some sort of limbo. Not pregnant but with a messed up body that presumably wouldn’t get pregnant very easily if I wasn’t having periods.

A couple of weeks later and I still hadn’t started my period so I did another test and it was finally positive. I told John in a very unromantic way and he was cooking dinner as I marched into the kitchen and stuck the test under his nose with an “I knew it!”

I had the weird pink tinge and a bit of bleeding again, which wasn’t as heavy as the two times before when I’d miscarried but I did go to the doctor who booked a scan for me given my recent history. The scan showed a little blob not even recognizable as a baby yet, with a heart thumping away. The sonographer said I was measuring about 5 weeks pregnant but must be a couple of weeks further along than that given that there was a heartbeat (by my calculations I was 7 weeks). I went away feeling much more optimistic that this one would ‘stick’ as there was a heartbeat. The bleeding didn’t carry on, and we got to the 12 week mark and had that scan – and there she was, looking like an actual baby now with arms and legs wriggling around.

A couple of days after the scan I got a phone call from the hospital. They said my blood test had shown abnormal HCG levels. I can’t remember if they were too high or too low, but they thought it might be a problem because it could mean the baby wouldn’t grow properly and could be too small. They also said the scan and blood work showed a higher than average chance that the baby could have Downes Syndrome. We were given the option to go back to the hospital and have an amniocentesis which could tell us for sure whether this was the case.

We talked about it but we agreed that if it was confirmed that the baby had DS we would still have it and therefore we didn’t need further testing. I did want to know for sure, but not at the risk of losing the baby, and since amniocentesis can increase the risk of miscarriage we said no.

The doctors told us that if there were any growth issues they wouldn’t show until the second half of the pregnancy as all babies developed at a similar rate up until about 20 weeks. After 20 weeks though I was put under consultant care and given more regular scans, partly because of their concerns that she would be small, but also because of my difficult birth and emergency C-section with Katie.

We talked about whether to find out the gender at the 20 week scan and decided not to. John had enjoyed not knowing with Katie, and I wasn’t sure I wanted to have to keep it a secret again! I really didn’t mind if we had a boy or a girl and I knew from having Katie that I should ignore any feelings I might have of what sex it was as my maternal instinct was rubbish in that respect! The 20 week scan was a good experience as luckily she seemed to be growing fine and looked healthy. They checked again for any signs of Downes Syndrome and couldn’t find any.

I was quite pleased with myself at the scan for resisting temptation to find out what we were having, but as time went on I really hated not knowing! John didn’t come with me for all of the follow up scans, and at one of them the sonographer asked did I know what we were having? I had a sudden impulse and said ‘no, can you tell me?’ Another girl! So again, I had to keep it a secret, and I didn’t even tell John I’d found out, but it was so much nicer knowing we were having a girl than thinking ‘it’. And again I did keep it to myself and John didn’t know until we had her. Go me.

Because of how big Katie had been when she was born and because of her dodgy blood sugars, this time round I was tested for gestational diabetes. My test came back on the high side of normal so no further action or testing was suggested.

Part of the discussion with the consultant was whether I would try for a vbac (virginal birth after caesarian) or have a planned C-section this time. She said that there was no reason why I couldn’t have a natural birth. It didn’t reassure me much, as there hadn’t been any reason why I couldn’t have a natural birth with Katie either but I hadn’t managed it. The consultant also said this time they wouldn’t let me be induced because that could be more dangerous after a C-section, so if I got to 40 weeks and hadn’t gone into labour they would do a C-section anyway, but if I went into labour on my own she would suggest I give birth naturally. I really wanted the C-section! I’d tried and failed with natural birth, whereas I’d been there done that with the C-section and knew what it was like. My dates didn’t match up with the hospital and they had my due date as 10th July, whereas I had it a week earlier. I was certain of my dates because of the fact we’d been trying to get pregnant and I could pinpoint Alice’s conception to one of two days, so their version of me getting to 40 weeks was actually my version of getting to 41 weeks. I didn’t want to end up going into labour, trying for a natural birth and then ending up needing another emergency C-section. So I opted for the C-section and it was booked in for 3rd July (39 weeks in their book and 40 weeks in mine).

We were the first ones on the list on the day which was handy since you’re not allowed to eat or drink anything. Not that the emergency C-section with Katie had felt stressful at the time, but a planned C-section was pretty relaxed! Everyone was calm and chatty and it all felt very chilled out. I could feel the doctor tugging a bit, and I knew the moment Alice was born because I suddenly felt a load of pressure released and there she was. John happened to look over the screen just as she was lifted out so he saw straight away and told me we had a girl. She didn’t need any of the extra attention Katie had had, so we had a lovely time holding her and taking photos while I was stitched up.

It was nice having her in the morning because we had all day for cuddles and phoning people, and in the afternoon my mum brought Katie to see her little sister. She gave her a quick cuddle and then was more interested in playing with the buttons on the bed and moving it up and down!

The after effects of the C-section were a lot more painful second time round. I remember going to have a shower and finding the walk from the bed to the bathroom pretty hard going. I had to stop and sit down for a bit before having the shower, sit down after the shower, and when I got back to the bed I was properly shaking. I made use of the painkillers they gave me plus took the morphine when it was offered. It only lasted a couple of days though and then I was fine.

With Katie I’d had dissolvable stitches but the doctor when I had Alice said my scar was a bit untidy so he decided to cut in the same place but use a different type of stitch. I don’t know what it was but the midwife doing the home check up a few days later had to cut them and take them out. She said the wound looked fine but later that day when I had a look one side was coming open. It looked pretty disgusting so I went to the doctor and they put steri strips on it to help it stay closed, and gave me some antibiotics just to be on the safe side. After that it was fine, and when it had healed properly the scar was definitely neater than after I’d had with Katie.

The hospital were going to discharge us after a couple of days but I thought Alice looked slightly twitchy. I remembered when I’d had Katie the midwife said it looked like she was twitching or shivering slightly and that’s why she had called the doctor, as it could be a sign that the blood sugars weren’t right. I mentioned it to the midwife and she said not to worry and Alice was fine, but I asked if they could check her blood sugars before they discharged us. They did (I think just to humour me) and found that they were too low – nowhere near to the extent Katie’s had been, and she didn’t need to go to special care, but they did keep her in for an extra night and got me to top her up with formula after a feed to make sure her sugars stabilised. I had mixed feelings about that one. I was desperate to get home to see Katie again but proud of myself that my maternal instinct was kicking in and I’d done what was right for Alice. We got discharged on a Sunday so we went round to my mum’s as she had been looking after Katie, had a roast dinner and watched the men’s finals at Wimbledon.

Two C-sections, two baby girls, happy days.

We’re moving school!

We got confirmation over half term that Katie has been accepted at the school we applied to, so she will definitely be starting there in September. She will be in a year 5/6 mixed class of 15 kids including her. There are only 47 kids in the entire school, compared to her current school where there are 60 to a year and about 420 in the school.

Even with all the issues at her current school and the fact that I’ve been hoping since we visited the new school that Katie would want to go there and that there would be a vacancy for her, I still had a moment of panic when we got the acceptance through. Have we done the right thing offering her the chance to go to a new school? Has she done the right thing deciding that she wants to move? Are we just making life unnecessarily difficult having Katie in a different school to her brother and sister? Do we ever stop worrying as parents that we’re doing the right thing?!

This was a very fleeting moment of doubt. I think the answer is absolutely yes we have made a good decision, and this is why:

1. Katie has seemed a lot more settled in her current school this term than she was back in January / February when we started thinking about moving her. She has been less resistant to getting ready in the mornings and most of the time she has walked straight into school instead of hanging back with me and desperately thinking of reasons why I might let her have the day off. Most days she comes out of her classroom chatting with a friend and looks pretty happy. So far so good, maybe after a tough couple of years things are getting better for her and we should leave things be.

Or not. Firstly she has only become more relaxed about going to school since she reached the decision she wanted to leave. It’s like she can put up with it better because she knows the end is in sight. Secondly, this kid can mask and she can mask extensively. There are times when she is genuinely OK at school. There are other times when she looks OK but is absolutely not. There are still plenty of days when she comes out of her classroom smiling and looking totally fine but literally the second we’re out the school gates the mask is off and the effort of getting through the day is obvious. She will snap at me, Alice or Matthew just for breathing never mind talking, her tolerance for anything is non existent and in the 5 minutes it takes to get home she’s turned into a different person. She will disappear into the conservatory to hang out with the laptop and her guinea pigs and won’t reappear for a couple of hours unless it’s to yell at someone for being too noisy.

2. Katie makes friends quite easily but finds maintaining relationships difficult. She has a couple of friendships at school so we have considered that maybe we shouldn’t be disrupting them. But I can’t really see it being a problem because her friends at school live within 5 minutes of us and I get on well with their mums. She will still be able to see them outside of school and keep those friendships going. Also one of her friends at school was possibly going to be moving to Scotland this summer but it’s fallen through and she will be staying now. I wondered if this would mean Katie suddenly didn’t want to move schools and would want to stay with her friend, but she still wants to move which is reassuring.

She has also recently become friendly with another girl in her class. She has told her she is autistic, and this other girl told Katie that she has anxiety and is being assessed for ADHD. I’m so glad that Katie is starting to get comfortable telling people that she is autistic because for the most part she still sees it as a negative and doesn’t want people to know. I don’t know this other girl’s parents but again this is a friendship that we can encourage outside of school because they’re local and I can make contact with the parents easily enough.

3. During the 3 weeks Katie had to home school recently because of all the covid cases in her year it just reminded me again how much more settled she is when she’s not in school. She seemed very comfortable learning online and did her work on the lap top with minimal complaining. She got through it quite quickly and to a pretty decent standard – even English, which she doesn’t like and I thought would be an effort to get her to do. It didn’t really match with feedback we’ve had from her class teacher who says that she needs to build up her stamina when it comes to writing and that there are times she just point blank refuses to do the work.

Katie said that it was easier to concentrate at home because it was quieter and she could sit on her own and just get it done and out the way. She also said she much preferred working on a laptop because writing hurts her hand. She still didn’t really enjoy doing the work but just those two things made a big difference to her ability to get on with it.

I know moving to a new school is not the same as home schooling but hopefully being in a class that’s half the size of her current class will help. By default there will be less noise and less crowding. This also reinforced that we need to look into occupational therapy for Katie. From what I’ve read it’s relatively common for autistic children to have OT to help with writing. Maybe she would benefit from access to a laptop for all her classes, maybe she wouldn’t. But I know for sure if I approached this with her current school they wouldn’t even consider it – they’ve pushed back on accommodations that don’t cost them anything never mind a laptop. On occasions where they are using laptops in lessons 1 laptop has to be shared between 4 children, whereas when we went to visit the new school they said that there is one laptop available per child so potentially this could really benefit Katie.

4. When I told Katie’s new school that we had put in an application for her to go there, the email back said ‘oh that is lovely, we will look forward to welcoming you all.’ One small and insignificant sentence but it made me so hopeful. I have felt for so long at the current school that we’re seen as annoying, that Katie is seen as a child with an attitude problem and that I have no choice other than to battle and make a nuisance of myself. I can practically see the eye roll at the other end whenever I press send on an email and my name pops up in their inbox. Whether the new school meant it or not it was just so refreshing to hear.

5. When I phoned the current school to let them know that Katie would be leaving at the end of the year they asked where she would be going so I told them. “Oh yes, that’s much smaller, I expect she’ll be happier there.” Which is true, but that was a total assumption on their part. They didn’t actually ask why we’d decided to move her. They didn’t seem to think it was weird that we’re moving one child and keeping the other two there. They didn’t ask for any feedback and just said that there is a waiting list for the school so now they know Katie is leaving they can offer her space to someone else. Which pretty much sums them up. From speaking with friends and neighbours it seems that children who keep up academically and who don’t have any additional support needs do well there (like Alice, who is very happy there, and presumably like Matthew which is why he will be starting there in September), and children that do need support don’t get it and end up leaving. It’s such a bad system and it’s so unfair on the children. There is a part of me that wants to leave Katie there, kick up a huge stink, make them change their policies, and make it better for all the SEN kids who follow. But I’m not willing to use Katie as the guinea pig for that. I just want to get her out of there and give her what will hopefully be a better experience at a different school because as things are at the moment she’ll have given up before she gets to secondary school.

6. If nothing else, even if her new school ends up being as completely unsupportive and lacking in understanding as her current school, by default it must still be a better environment for her purely on the basis of it’s size. One of my friends asked me if it was a private school (it’s not) because those small class sizes automatically mean the teachers get to know the pupils better and have more time to help them in areas they’re struggling.

So….roll on September when Katie will be at her new school and Matthew will be starting school for the first time. Here’s hoping that Katie has a better school experience than she’s had so far. And here’s hoping that Matthew is able to jump in at the deep end and enjoy a noisy, busy, chaotic school without support in the same way that Alice has been able to. If he’s not, we’ve learnt the hard way not to ask for help and to get him out of there as quickly as possible.