These are a few of my favourite things

This half term has felt hard work. I’m on a really short fuse and struggling to reign it in. I’m irritable and I’m shouty, and I don’t like it and I’m sure the kids don’t like it. People talk about the importance of self care and how you can’t look after other people if you can’t look after yourself but it’s easier said than done. There literally aren’t enough hours in the day. Plus I don’t really feel that I need an hour or two to myself. I could do with a week hibernating under the duvet, but since that’s not going to happen I thought I’d remind myself of some of my favourite things about the small people to try and snap myself out of the eye rolling and sighing!

Katie (age 9)

  • Katie and animals are a good combination. Horses are her number one and she would live up at the farm where she rides if she could. In the school holidays they do stable management days and pony days which she always wants to go to. She’s great with our cat and always has been since she was tiny. She’s never chased after him or stroked his fur the wrong way or pulled his tail like most toddlers would (including Alice and Matthew!) and she sits and chats away at him. He’s quite a lap cat and most evenings he will jump up and have a cuddle with me, and Katie likes it now she’s getting bigger and he can fit on her lap now. She thinks it’s great when he chooses her over me! She spends a lot of time in the play room hanging out with her guinea pigs. They were born some time around the end of October so the other day she decided it was their birthday and she was singing happy birthday to them and giving them extra salad. She likes going round friends’ houses who have dogs and will always ask to go and walk the dog. She just generally seems more happy and relaxed around animals.
  • She has a very practical nature and is handy to have around when something needs making or setting up! I’m the total opposite. I can’t follow instructions and have no interest in trying. Making or assembling things is a nightmare for me. Matthew has a Scalextric set so whenever he wants to play with that I always ask Katie to set it up for him! If a knot needs unpicking she’s my girl. If a toy breaks Katie can usually come along and fix it.
  • Alongside that, she also loves to have a job or a specific role. She’s all or nothing and if we ask her to do something that she doesn’t want to do it’s a real battle, but when it’s something she’s interested in or has chosen to do she’ll go for it 100%. She wanted to wash my car last weekend and spent most of the afternoon outside with John getting every spot of dirt off. Her new school have commented the same. She struggles with PE and is very reluctant to get involved, but if they give her a specific role like setting up the equipment or timing the others when they run then she’s happy and will get involved. We had a celebration of life for John’s grandad a few weeks ago and Katie took it upon herself to be the kitchen helper, so while the other kids were eating and running around the hall Katie was making cups of tea and coffee. She likes to do this at home as well and will make me and John a cup of tea or hot chocolate most evenings. I love watching her happily pottering around when she’s got one of her jobs to do.
  • I love Katie’s attention to detail and the things she notices that most people don’t. When she washes her hair she nearly always comments on the feel and the sound of the shampoo frothing up on her hair. She notices how things smell and how they feel and can be very descriptive about her surroundings. She remembers details that other people have forgotten as well and will often correct me if I’m talking about something that happened in the past because I’ve got something wrong.
  • Bit of a random one but I love Katie’s hair and fingers! Her hair is super long because she hates having it cut, but it’s really thick and in good condition. She has light brown hair but it has natural lighter streaks in it. She basically has hair that people pay a lot of money for at the hairdressers but she gets it for free! And I always notice people’s fingers because mine are quite short and stubby and I’m a bit self conscious about them. Katie has really lovely long thin fingers that I’m just jealous of!

Alice (age 7)

  • I’m always impressed with Alice’s determination when she’s decided to do something. She will keep practicing and trying until she gets there. She loves gymnastics and has always been able to do the front splits but has worked and worked at doing the side splits, and now can. She can swim but prefers not to be out of her depth. In her swimming lessons her class is in the middle of the pool with a lower level class one side in the shallow end and a higher level class the other side in the deep end, which means if Alice stands to the right at her lesson she can touch the bottom and if she stands to the left she can’t. I watched her the other week go straight to the shallower part, and then without being asked she gave herself a bit of a talking to and moved over to the deeper bit. She will look to challenge herself and push to do better.
  • She is little miss chatterbox and enjoys sharing information about her day. I will get a run down after school of what they did in the lessons, who she played with, what they played, if they had a different teacher, who’s said what to who. I don’t get anywhere near that from Katie or Matthew!
  • Alice is very imaginative and can occupy herself for a long time with games, again more so than the other two. In the morning she will often stay in her bedroom playing with her dolls and there is a constant stream of chatter coming from behind the door as she makes her dolls talk to each other and role plays. She also likes to fill the bath and play with her mermaids and she’s good at coming up with games for her and Matthew to play.
  • I love that she is inclusive and thinks of other people. The girls both had friends over the other day and Matthew didn’t, so Alice straight away said he could join in with her if he wanted to. She quite often mentions that so and so was a bit sad at school because they didn’t know who to play with so she’s played with them.
  • Alice’s drawings are the best! Even when tempers are short or it’s not been the best day her drawings are always happy. They’re smiley people, rainbows, butterflies, love hearts and colour.

Matthew (age 4)

  • I remember having Alice and everyone said the second baby fits straight in and tends to be chilled out as they get dragged around to fit the schedule of the first child. Alice had other ideas and spent at least the first 6 months of her life crying every time she was put in the car! Matthew on the other hand has been and continues to be the promised easy going child who has spent his life being carted around based on the schedules of his two older sisters, and has done it without complaining!
  • He is mr affectionate and still gets into bed with me every morning for a cuddle. He’s small enough to fit just nicely and he’s got a real thing about wriggling his toes so that they’re under your knees or under your back. He still has cute little toddler feet and I just can’t imagine that one day they will be stinky hairy teenage feet that I won’t want anywhere near me! He doesn’t make a big deal of kisses and cuddles, but will just come and stroke my hair or give me a kiss and then go back to whatever he was doing.
  • Matthew is quite a charmer and definitely has a way with the ladies. He’s cute and he knows it. Other mums like him because he has long girly eyelashes and quite literally flutters them at people, and they always comment that he has good manners. He seems to have a lot of girl friends from school and preschool as well (in contrast to Katie and Alice who don’t like playing with boys) which is maybe from having older sisters.
  • I love Matthew’s way of speaking. He has some really odd phrasing and talks like a little old man sometimes. I don’t know where he gets it from but me and John often have a chuckle at the end of the day comparing notes at the things he’s come out with. Annoyingly I can’t think of any now as I write this!
  • Just a story about Matthew which I will always remember and we’ll probably be embarrassing him with at his 18th birthday. He has a serious peanut allergy and has to carry epipens with him. He’s really good about it and knows to tell people about it and that we have to check the labels on food for him. Katie was having lessons at school about body parts and all the correct names for them, so one day came wondering into his room as he was naked and told him that his boy bits weren’t called his winky (as he calls it) but is actually his penis. Matthew looked absolutely horrified and said “But I’m allergic to peanuts!” It was a classic. He’s also allergic to walnuts and pecans and for a while was a bit confused with that and told people he couldn’t be around tin cans.

Work experience

I work for a charity that supports school students to improve their work related skills so they’re more ready to start employment. Pre-Covid my role was to arrange work experience placements for students from year 10 and upwards. Following a pause because of covid, schools are now starting to ask for work experience placements again. As part of the process we always ask students to let us know if there are any additional requirements or support needs we need to make an employer aware of.

For the most part we don’t get a lot of information back on the additional requirements section. There will be a few students with serious allergies who carry epipens, the occasional physical disability, hearing impairments etc. Our message to students and their parents / carers is that it’s up to them when their placement is secured to make contact with their employer to discuss any accommodations they might need, but we also need to know so that we can place them in the most appropriate environment. For example, do they need a workplace with wheelchair access, do they need to work reduced hours, do they need a member of staff from school to accompany them etc.

With each year group we work with there will also be a small number who let us know they’re autistic and these have been the students I’ve found it hard to know how to place because I didn’t really understand what the most appropriate environment might be or what accommodations might be needed. Often the students don’t give any further details, and when we ask the school SENCO it’s common for them to say no additional support is needed or that it will be managed by school.

Now I have an autistic child myself I know that as a parent I would be fully on board with her going out and doing work experience, but only in the right environment. Let’s say we put ‘autism’ on her form but didn’t provide information on what this actually means and Katie got placed in a kitchen somewhere because she likes cooking. If she was put in a big, noisy, busy kitchen with a couple of other work experience students she would struggle big time. She would miss half the instructions she was given because she would be distracted by the noise, she would think she had done something wrong and was being shouted at if her supervisor was having to raise their voice above the noise, she would be worried about the amount of people and potential for them to bump into her, and she would stress about having to be sociable and make conversation with the other students. If she was put in a small / quiet café on her own she would find it a lot more manageable with less noise, a supervisor who was just concentrating on her and not other students, and not having to talk to so many people.

In both situations she would get through the day and appear to be OK, so I suppose from that point of view we wouldn’t need to specify any accommodations or give further details about her autism. But if she was in the first situation she would probably come home and be completely exhausted, need the rest of the day to be by herself and have quiet time, her anxiety would be sky high and she would need a total lack of demands placed on her at home. She probably wouldn’t have a positive experience and would be scared of getting a ‘proper’ job when the time came. If she was put in the second situation she would still have some anxiety but she would most likely enjoy it and develop confidence from it. If we asked for her to have regular breaks, instructions to be given clearly and broken down into small chunks, and for an employer to recognise that she is listening even if she’s not looking at them that would be even better for her.

Which makes me wonder, why did we so consistently get information back telling us that students were autistic but with no further information about what this meant or what adjustments could be made? Is it because autistic kids and their parents are so used to not having their needs adequately met that they don’t bother trying anymore? Is the assumption just that they’ll have to just suck it up and get through the week? Did parents think we wouldn’t want to place their children if there was extra effort involved?

I read an article a while ago (here) highlighting that pupils in England are waiting up to 5 years for a special needs plan because of delays and bureaucratic hurdles. There is a widening gap between children from poorer families who have no choice but to wait out the delays, and better off families who end up paying for assessments or additional services themselves. This doesn’t surprise me but it does make me angry and worried about the future, including the fact that if children have an EHCP (Education Health Care Plan) this can be applied and is relevant in a work experience setting. If they don’t have one because of delays or because they’re told they don’t need one it’s so much hard to get supportive measures in place for them.

I was talking to a colleague whose son is autistic and is at a mainstream secondary school. I asked her what the school was like in terms of understanding his needs and supporting him and she just shrugged. She didn’t even know if all his teachers were aware of his diagnosis and said they don’t see the need to support him because he sits in the classroom quietly and does what he’s told. But she also said he struggles to understand the instructions and would do better academically if tasks were broken down or more clearly explained. He worries a lot about if he’s doing things right because he’s a real rule follower but doesn’t always know if he’s interpreted the rules in the way he’s expected to.

This is similar for Katie as well. Her old school told us she doesn’t need an EHCP because she’s doing fine academically. They didn’t feel she needed accommodations in the classroom because they always said she “looks fine”. Katie’s emotional wellbeing is more important to me than her academic ability but this statement really bugs me. As things stand Katie is average / meeting expectations across the board academically, which is fine. But maybe she’s not meeting her full potential and maybe if she wasn’t spending all her energy just trying to deal with her anxiety and get through the day she could be an above average student. She is doing a lot better in her new school and I am going to talk to them about their views on whether she would qualify for / benefit from an EHCP.

There needs to be a fundamental shift in thinking about autistic people. It shouldn’t be the norm for neurotypical people, whether that’s teachers, SENCOs, employers etc, to be the ones who are sat there deciding that the autistic person in front of them ‘looks OK’ and therefore doesn’t need any support. Surely the autistic person should be allowed to advocate for themselves and tell someone what they need without fear of not being believed, viewed as a nuisance, or only being met half way. I know me getting on my soapbox and moaning via a blog isn’t going to make any difference but it’s really frustrating for me as a parent experiencing this on Katie’s behalf, and I worry about how she will manage when she’s older if she doesn’t have the confidence to advocate for herself because she’s constantly being told she doesn’t really need anything. One thing is for sure – when she is old enough to be going out on work experience I will be making sure that there is an understanding of what she needs and that she’s given an appropriate placement in a suitable environment.

It’s raining it’s pouring

So this Saturday it absolutely pelted it down with rain all day. It’s the kind of day that I used to secretly quite like before I had children. John works Saturdays so I probably would have stayed in bed for with a cup of tea and a cat on my lap, cleaned the house and tidied up a bit, and then spent the afternoon reading a book or watching a film – just pottering around doing my own thing in my own time. I also really like the sound of rain falling and can quite happily while away some time staring out the window and watching it coming down.

Fast forward 10 years and a rainy day with three primary school aged children isn’t particularly my idea of fun! Sometimes they’re OK and we’ll get some board games out and play them, or the kids will play together, but more often than not they all want to do different things or they get bored without seeing their friends, and even if they all agree that they want to play a game or watch a film they’ll still all want to play different games and watch different films!

This Saturday we had some plans so it wasn’t too bad, just a case of getting soaked going in and out the house! The girls have swimming lessons every Saturday morning at 9.00, so we have to get up and get going as if it were a school day – not my favourite thing! But there is a long waiting list for swimming lessons since covid so to be fair a 9am lesson is better than no lesson at all.

Swimming isn’t something any of the kids have asked to do, it’s something I make them do because I don’t want them to drown! Matthew has only just started (I couldn’t get him in on a Saturday so he does Tuesday after school) but is quite excited by it all and is having fun splashing around during his lessons. Alice likes swimming and is progressing through the various stages. She can swim, it’s more a case now of getting the breathing right so she doesn’t have to put her feet on the floor and can just keep going. Katie is fairly indifferent to it all. She likes swimming on her front but she really struggles to do it on her back, to the point that she’s been in the same stage class for nearly 2 years now (albeit with a couple of breaks due to covid and various lockdowns) and is a bit cheesed off that Alice has whizzed ahead of her.

Swimming is also another reminder of how Katie’s sensory issues can really impact what she’s doing and make things that much more of an effort for her. It may well be that swimming wouldn’t come naturally to her anyway, but there are other factors that she finds difficult that the other two don’t really get bothered about. For starters Katie likes to know what’s going to happen and when, so when she gets to her lesson and finds she has a substitute teacher that always throws her off a bit. Her regular teacher knows she loves horses and will try and bring some sort of horse theme into the lesson for her, even if it’s just sitting on a noodle and pretending it’s a horse, but it always makes Katie smile and engage in the lesson more, whereas obviously a substitute teacher wouldn’t know to do that. Her regular teacher knows that Katie won’t always look at her and doesn’t mind her not doing parts of the lesson if they’re too much, whereas a substitute teacher might nag her a bit more about those things. Plus it’s a break of routine and an unexpected difference. It doesn’t mean she can’t or won’t do the lesson if there is a different teacher, but it does mean she’s more likely to be anxious and a bit ‘prickly’ afterwards. This Saturday was one of those days where she had a substitute teacher.

The pool environment doesn’t really suit Katie either. She really doesn’t like some of the sensations that come with swimming, which I suppose is the same for a lot of people but everything is always heightened with Katie. She doesn’t like getting too close to the other kids and getting splashed or caught with a stray arm or leg so she usually hangs back and tries things after everyone else. She doesn’t like baths or showers in general and getting her to have one at home can be hard work so we’ve come to the agreement that she has a shower every week after swimming when she’s already wet anyway, but she doesn’t like the temperature changes from the pool to the cold air and then into the warm shower. Then once she’s in the shower she doesn’t want to get out and be colder again. She loves the feel of shampoo frothing up in her hair so it can also be quite hard to get her past the hair washing stage. She doesn’t like having her hair rubbed dry or dried with a hairdryer and she doesn’t like having it brushed either, although my mum did find a sensory friendly brush which has made that a million times easier. She doesn’t like putting clothes on when her skin is still a bit damp. And for a child who finds noise difficult to deal with the shouting, splashing and echoing that come with being in a pool aren’t ideal for her – so there is a lot for her to contend with every swimming lesson and it’s credit to her that she gets up and gets on with it most weeks. I’m not sure how much longer she’ll carry on for given that progress is slow and difficult for her, but I do feel ultimately that it’s worth the effort because she does enjoy actually being in the pool. We’re lucky that my dad has a pool in his garden and it’s always Katie that will get straight in it in the summer and spend the most time in there, so if she could swim a bit more confidently and we didn’t have to watch her the whole time that would be a bonus.

It did make me chuckle after swimming this week as the rain was hammering down when we left. Me, Alice and Matthew were all in rain coats, hoods up, heads down against the wet, and then there’s Katie who just doesn’t pay any attention to the weather, didn’t bother with a coat, walked straight through all the puddles and got wet feet, and couldn’t care less.

The other thing the girls had on this weekend was a recording session for the singing group they’re in. They had extra sessions on top of what they usually do and were recording both Saturday and Sunday afternoons. Their teacher had to hire a different venue to the usual one they sing at, and they’d had a practice session there a couple of weeks ago. Katie had come home really stressed afterwards. The acoustics in the hall must have been a bit unusual because Katie said she had a headache and that everyone had been shouting all afternoon, even to the point where she said they were all shouting not singing. She’d been really tetchy for the rest of the day and obviously quite unsettled by it. She asked if I could get her some noise cancelling headphones for when they went back for the recording sessions, which I was surprised about because I’ve offered to buy some for her before and she’s always said no because she doesn’t want to stand out. So I bought the headphones and gave them to Katie to try and she seemed OK about it…

Until the night before, when she was really upset because she was stressing about the recording session and being back in that hall. There was lots of crying and lots of worrying about the noise making her feel ill and feeling that she was letting people down. She said she didn’t want to do the recording because she didn’t want to go back to the hall, but she was worried that we and her teacher would be upset with her. Lots of talking and reassuring later, we got to the point that:

  1. She could bring her headphones with her and hopefully they would help with the worst of the noise
  2. If it was getting too much she could go outside and have some down time
  3. Her teacher was going to try and rearrange things a bit and maybe have them up on stage so that the sounds didn’t reverberate quite so much
  4. If at any point it really got too much I could come and get her
  5. She didn’t have to do any of it at all and if she just wanted to stay home that was ok too

Katie decided to give it a go and I’m so glad she did because she came out after the Saturday session and was absolutely buzzing. It was a massive difference from how she’d been after the first session. She was really keen to go back and finish it off on Sunday and was literally beaming from ear to ear. Her teacher said she had been really good at telling them what she needed, and Katie said the headphones made a big difference. She has been so reluctant at having any ‘obvious’ accommodations so the fact she was prepared to wear the headphones and be more open about what she needed feels like quite a positive thing. I hope she is starting to feel more comfortable in her own skin and more confident in herself.

It made me stop and think for a moment about just how important these adjustments are. Nearly everything Katie needs, whether at home or at school or at an extra curricular activity, takes minimal effort or time. It’s just simple tweaks to her environment but they make such a difference to her wellbeing and ability to enjoy or focus on what she’s doing. It also makes me realise how much extra effort Katie has to put in to things. Alice didn’t even have to think about the fact that they would be recording in a different venue. It doesn’t bother her. It doesn’t make a difference. I didn’t have to think about it as far as she was concerned either, I just dropped her off and picked her up later and that was it. She had a great time and her teacher said afterwards that Alice had been one of her star singers. Whereas for Katie the build up is worry, stress, uncertainty, planning, anticipating, checking, having contingencies in place. It’s draining for me and even more so for her.

So…definitely a very different rainy Saturday these days to what it would have been a few years ago! I didn’t get a lie in, the house didn’t get cleaned and I didn’t pick up a book. But I did get to feel proud of both my girls as well as spend a bit of time with Matthew while the girls were out.

After Death

I am really lucky that I had all 4 of my grandparents in my life until my Grandpa died when I was 20. My Grandma died when I was 26, and my Gran died when I was 34. I still have my other Grandpa.

I don’t know what I believe about why we’re all here, what life is all about, what happens when you die etc, but I don’t like to think that death is the end. I also don’t like to think that ghosts are real because I hate the thought of being stuck in limbo, not properly part of the world you’ve left but not being able to ‘move on’ either.

I can’t remember how long it was after Grandpa died but I did have a dream about him which I found comforting and I wrote to Gran afterwards and told her about it. In the dream we had all the family at our house – cousins, aunts, uncles, lots of people and noise. Gran was sat at the table and Grandpa was sat right next to her. They weren’t talking but were just sat comfortably side by side. Gran knew he was there and I got the impression he was with her quite a lot. No one else had seen him and they were just carrying on as normal while I sat there staring. Then Grandpa disappeared but Gran wasn’t upset and I felt like he’d be back with her another time. She looked up and saw me staring and said with a smile “You knew he was there didn’t you”. And that was the end of the dream because I woke up. I have no idea if this was some sort of ‘message’ from the other side or if it was just my brain making up a nice story, but either way I’m glad I had that dream.

I also had a dream not long after Gran died that me, John, the kids and my mum were at church (which was out of context as my mum doesn’t go to church, and Gran did but we didn’t used to go with her). The rest of us were sitting together but Gran was a couple of rows in front of us sat on her own. The kids were pointing and saying “Look there’s Gran” but my mum told them that she wouldn’t turn round. So we sat through a church service with Gran there in front of us but it was comforting to have her there even without being able to talk to her or be with her properly.

The last thing that happened wasn’t a dream and it came completely out of the blue. It was a few months after Gran had died, just before Christmas and I was in the kitchen at home with some Xmas songs and carols playing. I was on my own so I’m not sure if John was putting the kids in bed or they were just playing in another room. But the song ‘O holy night’ came on so I was just listening to it and suddenly it was like Gran was right there with me. I could smell her so strongly, which was weird in itself because I never really thought Gran had a particular smell. I could almost physically feel her standing right next to me. It felt like if I reached my arm out I would touch her or I could hug her. I just stood there while that song was playing, with Gran right there next to me and it was so lovely to have her there with me. Then the song finished and she wasn’t there anymore. I have no idea why that happened because it wasn’t a song that I associated with Gran at all and I don’t remember that I’d even been particularly thinking about her that day. I asked my mum afterwards if she knew any connection between Gran and O Holy Night and she said no. But again, regardless of why it happened or what it meant I’m glad to have had that moment.

Even though O Holy Night had no association with Gran while she was with us, since that day it’s a special song to me. I sometimes just play it anyway regardless of the time of year, and I always love hearing it at Christmas and remembering Gran and that moment. There are so many versions of it, and I love hearing choirs singing it, but that night it was a female soloist (I don’t know who) so that’s what I’ve linked to here.

New beginnings

Katie, Alice and Matthew have all finished their first full week back at school. Katie has moved to her new school now, Alice finished infants last year and has moved into the juniors, and Matthew has started school for the first time.

It was very reassuring to see that Katie was actually excited to start her new school. Her attitude to school has been either disinterest or misery for so long that I wondered if the damage was done and she’d never have any positive views on school. She went back a day later than Alice and Matthew so we had a lovely day together just me and her before she started, which is always good because she loves one to one time. The day she started school she was hopping up and down, smiling, excited to put her new uniform on, and she walked straight in with no hesitation. Her school sent me a text part way through the day to say she was doing fine, and when I picked her up she came out with a massive grin on her face. It’s only a 20 minute drive from her school to home but she didn’t stop talking about all the good things that had happened. I literally can’t remember the last time a) she volunteered information about school without being asked and b) was just chatting about her day rather than worrying or complaining. She was like a different child.

At the risk of being a complete pessimist, I’m not expecting this to last! I’m sure at some point the novelty will wear off and there will be things she doesn’t like. By the end of the week she was complaining about the teacher who runs breakfast club. But it was amazing that she had such a good start and I hope it will boost her confidence to be in a school that does seem to care about her well being and what she needs. I hope she will be more comfortable day to day in an environment that is calmer and quieter and where she is allowed to leave the classroom and access fiddle toys when she needs to. She has still said the classroom is too loud, but she’s now in a class of 15 compared to a class of 30 at her last school, and a school of 47 children instead of 420, so however you look at it her school life is nowhere near as chaotic as it was! Katie goes to breakfast club at her new school (so that we can drop her off first and then take Alice and Matthew to their school) which also works in her favour because there are only 3 or 4 of them there that early. It means she gets to school before everyone else so isn’t arriving with a bunch of other people.

Her class is a year 5/6 mixed class and the year 6s can apply to be head boy / girl and the year 5s can apply to be deputy head boy/girl. Katie said she didn’t think she should apply to be deputy head girl since she’s new there, but she was thinking of putting herself forward to be a librarian. The fact she wants to get involved in school life is a massive thumbs up!

I have had an email from her class teacher today asking to arrange a time to catch up on how Katie is settling in, so I’m going to go and see him on Wednesday. It’s nothing amazing and nothing to jump up and down about but it’s a weight off my shoulders to know that things are being followed up and there appears to be a genuine interest in Katie. Her old school never once approached me unless it was to ask me to pick her up because she was “ill” (for ill read struggling with sensory issues that displayed themselves as a headache and desperation to escape school and that disappeared when she got home). They never asked what they could do to support her and when I made suggestions or asked for meetings they dragged their heels and couldn’t be bothered.

Matthew has seemingly settled straight in to school. There were about 5 others from his preschool who have started school with him so he knew a few of them but now has about another 50 kids to get to know! He came out very happy after his first day because he got to choose his pudding with lunch, and that seems to be the highlight of his school career so far. He also had a big ink splodge on his brand new jumper, and announced that he was getting married to one of the girls in his class. So far so good.

I can’t believe the speed with which he seems to have forgotten his preschool. He absolutely loved it there and was excited to go every day. But as soon as he’d done his ‘stay and play’ session at school he announced that he was ready to leave preschool now thank you very much and hasn’t really mentioned it since starting school. I’m pretty sure I’m missing preschool more than he is! I’m really pleased he’s managing the transition well and I’m not at all sad that my ‘baby’ is growing up or anything like that, but I did love preschool. It was such a lovely environment where the kids are all at the age where everything is exciting and they’re encouraged to explore and play with anything they like, and school just isn’t that same atmosphere.

Alice….well she’s the ‘easy’ child and my hopes for her are just that she continues to enjoy school in the way she always has. She spent the summer holidays looking forward to going back, she’s come home each day full of news about who she’s played with and how much she likes her new teacher, and she spent the weekend looking forward to Monday. She’s happy because she’s been moved up two reading levels since going back. She’s getting packed lunches now instead of a cooked lunch (because she was only eligible for free school dinners as an infant so we’d have to pay for them this year and I’m too tight!) so she’s sad she won’t get ‘fish finger Friday’ anymore but she likes making her sandwiches and choosing snacks for her lunch box. Happy days.

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.