Chalk and cheese

This week has been just me and the girls at home together due to them having to isolate for 10 days after positive covid cases in their school bubbles. They are the only ones who have to isolate unless either of them get covid symptoms and then we would all have to stay home, but for now John has still been going to work and Matthew has been at preschool. I can’t remember when we last had so much time just me, Katie and Alice. I’m always commenting what complete opposites the girls are but they have really shown it this week.

They are both being set work by their teachers and have a combination of online lessons and worksheets to do. Katie prefers to do little chunks at a time spread out with lots of breaks. She’ll have an online teams call with her class and then take some downtime before getting on with the work that was set on the call. Her work ends up taking her most of the day by the time it’s all done. Alice gets up and wants to crack on with everything. She is usually finished by lunchtime and has the afternoon to do whatever else she wants.

Katie is very particular about what she likes and doesn’t like. At school she hates writing and it’s not unknown for her to just point blank refuse to do it. At home she’s been able to use a laptop to do her English work and she’s actually been pretty amenable to it. Also because she likes animals, especially horses, she’s incorporated something about animals into all her English work which has made her happier to do it. Having said that, earlier this week she still refused to dial in and join one of her online lessons. I kind of have mixed feelings about how she refuses to do things she’s not interested in. I half really admire the fact she’s got the balls to turn round to someone in authority and say no. I also can’t understand it because not in a million years would I have done that at school or to my parents. There were plenty of subjects I didn’t really like but I always did the work because I was told to so that was it. I guess I’m a bit of a sheep! Katie also has no qualms at all about handing work in that she knows she could have put more effort in to or that has mistakes in – her view is she’s been asked to do it so she’s done it and the standard doesn’t really matter, or that she didn’t want to do it and it was boring and pointless as far as she was concerned so why should she bother.

Alice likes to start the day off with the work that she least wants to do so she gets it done and out the way. She’s only in year 2 so her teachers aren’t even asking them to submit what they’re doing at home, although they can if they want to. If she makes a mistake she will redo it until she gets it right. She doesn’t like to hand anything in unless she knows it’s perfect.

Katie has been in her element at home without constant face to face interactions. She shuts herself in the conservatory to do her school work but then she’s been staying in there pretty much for the rest of the day playing games online with other kids from her class. She has spoken to them more this week than she does at school. She’s suggesting group calls, getting everyone together, chatting non stop. It’s a massive contrast to when she’s at school and she sticks mainly to a couple of friends or feels the need to retreat and be on her own.

Alice is the opposite and is much happier face to face. When she’s at school she goes skipping in with a bucket load of confidence, but when she’s on her class zoom calls she either just listens without talking or she talks really quietly and comes across as shy. She gets bored at home with no one else to talk to apart from me and Katie (really just me since Katie shuts herself away most of the day, and I’m trying to get my own work done along with home schooling so I’m not the best company). She was so excited today because Matthew doesn’t go to preschool on a Thursday so she had him to play with! She is already planning for when her isolation period is over and talking about who she wants over for tea and who she is going to play with when they’re back at school.

It’s not just their responses to isolation and home schooling that are different, it’s pretty much everything about them. Katie loves animals and Alice is either scared of them (dogs) or pretty indifferent. Katie is practical and likes a project whereas Alice is all about imaginary games. Alice is miss active who loves gymnastics and swings upside down off anything she can. Katie has balance issues, doesn’t like PE and says gymnastics is stupid. I could keep going with this, it’s a long list.

These two have been polar opposites from the get go. I love how two children with the same parents who are being brought up in the same environment and have many of the same experiences can be so completely different. There’s only so much influence parents can have and the more these girls grow the more they go their own separate ways. Nature is definitely winning over nurture in their case.

You’ve got this

There is a common theme doing the rounds on my social media pages these days of “We’ve got this” or “You’ve got this.” It picked up momentum in the third lockdown given that a lot of people were struggling. In one sense it’s comforting and gives a sense of we’re all in this together. But on the other hand, yes we’ve got this but at what cost?

I definitely did find the third lockdown challenging. It was the hardest of the three for me. It was during this time that Katie especially struggled. Her anxiety was worse than usual and she started self harming, and we really experienced the bleak end of a system that is clearly struggling to manage its load. The agencies we turned to for help were unable or unwilling to do anything useful. Instead the Emotional Health Academy told us to contact CAMHS, and CAMHS told us to contact the Emotional Health Academy. The GP put in an urgent referral to CAMHS, who promptly said Katie didn’t meet their criteria and closed the case. How can an 8 year old who is self harming and saying she should be dead not meet their criteria?! The Emotional Health Academy took a month to get back to us and their advice was to go on a parenting course and read a book. That stung. Absolutely we need to do parenting courses and autism courses, and that will be ongoing, but we had already done several at that point and we needed help for Katie specifically. They said they would contact us to follow up and see how Katie was getting on but they didn’t. They have since written to us to say they are closing Katie’s file and that we are still on their waiting list for their parenting course. We were (and are) still in an ongoing battle to get her school to provide the accommodations she needs to stop her getting overwhelmed on a daily basis. It’s a never ending uphill marathon that shouldn’t be so difficult. She deserves better. We deserve better. I spent most of that lockdown feeling totally helpless and desperate for some guidance and someone to lean on.

It was so hard for me and John to get any time together to talk things through. During the day we were working, or the kids were around, and evenings are non existent. Whichever of us was doing bedtime would spend hours with Katie trying to reassure her, make her feel safe, listening to her worries, trying to help her switch off and get to sleep. And then we would fall in to bed to get up and go again the next day.

I never felt so lonely as in that lockdown. We’re so lucky we have phones, video calls, social media etc as ways to stay in touch but week after week of these forms of communication rather than face to face is draining. By the time I was done with the work teams calls, the extra curricular zooms for the kids, the phone calls to school, the council, SENDIASS, CAMHS, the GP, the Emotional Health Academy, looking into private therapies because we were making no progress with the above, I didn’t have the capacity to call the people that actually mattered. I so wanted to talk to family and friends, but I couldn’t bring myself to pick up the phone again or get on yet another screen. There is no replacement for an impromptu catch up with a friend in the school playground or a hug from someone. It felt like conversations were getting harder as more time went on and no one had any news to share. No one was doing anything, no one was going anywhere, people were just existing. Even without covid a lot of people close to us have been going through their own personal difficulties and I didn’t feel comfortable adding my load.

Add covid on top of that, and even if no one had any bigger personal issues, lockdown 3 was still nearly 3 months of balancing home schooling, work and general life admin for most parents without their usual support networks. It was a case of head down and make it through each day. It was really difficult to look up and look around to see who was keeping their head above water, who was frantically splashing to stay afloat, and who was quietly drowning.

So yes during lockdown 3 I guess I found that “we’ve got this.” We avoided covid and we got through the lockdown just about in one piece, albeit slightly fragile. Life has certainly got easier now that things are easing up again and we’ve been allowed to start seeing friends and family outside. Katie and Alice have benefitted from their extra curricular activities starting up again. Katie lives for her riding lessons and Alice absolutely loves gymnastics. They also both do swimming and singing lessons.

There have also been some positives and things to be proud of for me personally during this time. During lockdown 2 and 3 I made a big effort to lose some weight. I pretty much ate my way through the first lockdown and having gone into it already bigger than I should have been, I came out of it with an extra stone on top. I’ve now lost 2st 10lbs and am thinner than I have been in the last 10 years. I’ve never stuck at healthy eating for this long and I’ve never lost this much weight before. At the moment I’m certainly motivated to keep going with it and hopefully I can lose a bit more and then maintain a healthy weight. I’m not sure how I’ve managed to get myself in the right head space to do this but I’m definitely pleased that I have.

I’ve also been seconded at work and am now in a different team. I was moved in November and started getting to grips with my new role in December, but then ended up being furloughed in January and February with lockdown 3. Once I came off furlough it’s been a real fast learning curve but I’ve got myself up and running to be delivering virtual workshops into secondary schools and have had some really good feedback from them. It’s been a challenge learning a totally new role and new processes alongside everything that’s been happening personally but I think I’ve done it well.

So from that point of view yes I’ve absolutely got this. Not only have we got through the lockdowns just about in one piece, but I’ve also achieved a big positive professionally and have made big inroads into losing the weight I’ve been yo-yoing up and down with for the last decade. I’ve gone from a size 14/16 to a 12.

As of tomorrow (17th May) the UK is easing restrictions even further and we will be allowed in each other’s houses, so in theory life is about to get even closer to some sort of normality. But not for us. Covid suddenly seems closer than it did through the peak as it’s suddenly spreading through the girls’ school. There have been positive cases in both their bubbles so they are both at home isolating for 10 days. They will both be off school next week and then Katie can go back on 24th and Alice on 25th. We’re back to home schooling and trying to juggle two different sets of school work with me trying to keep up with my own work. No extra curriculars, no seeing people, no leaving the house. It’s hardly the end of the world but it does feel like quite a set back. Katie is gutted to be missing her riding lessons. Alice is fine at the moment but she’s little miss sociable and will be bored and grumpy by the end of it. We’re actually really lucky that this is the first time through all of this that any of the kids have had to isolate because of being in contact with a positive case, but it is quite nerve wracking having to sit it out and watch for symptoms.

Being in our 30s John and I haven’t been fully vaccinated yet. I had my first jab yesterday (yay!) and John has his on Friday. We don’t have dates for the second jabs yet. I know the chances are that we’d be fine if we caught Covid, but that doesn’t mean I want to try it! John was asthmatic as a child and when all this first started he was put on the shielding list, but then told he didn’t need to shield after all so the messaging there isn’t too clear. Matthew also has asthma and has been hospitalised twice for breathing difficulties in the past. He is still under consultant care and takes inhalers twice a day and pills once a day. His consultant has been reassuring and said given that covid presents so differently in children she doesn’t think he’s at any greater risk than any other child, which is great. I’d still rather not find out though!

So, a lot of the time I feel I shouldn’t moan. We really are lucky in the grand scheme of things. But I have a twitch in my left eye that won’t go away and is seriously annoying. I have a lump in my throat that the GP thinks is silent reflux. It doesn’t hurt, it’s not really a problem, it’s just there. All the time. I feel breathless a lot. I’m the first to admit I don’t do anywhere near enough exercise but this isn’t breathlessness from walking or going up the stairs. It’s sitting down or lying in bed but feeling like I need to take a really deep breath and I can’t get enough air in. I’ve had an upset tummy on and off for the last few weeks. I have an itchy dry patch of skin on my stomach which again has been there for a few weeks now. I have a long term bad habit of picking my lips, which I had pretty much conquered, but have started doing that again with a vengeance. My lips bleed and are sore (one good thing about having to wear face masks, people can’t see!). I find it really hard to concentrate on work. I’m not as productive as I should be and then wake up in the middle of the night worrying about it. I’ve always been a headachy person and they’re not going anywhere any time soon. I have a headache most days. None of these are massive issues, but I would guess a collective physical result of emotions without the outlet they would have in normal life.

Yes I’ve got this. Yes my head is above water and I will keep swimming because there are still a lot of positives in life. But it would be nice to know when we’re going to reach dry land again and be able to take a break.

Katie’s birth

Me and John got married in 2011 when we were 27 and had agreed that we’d like to try and have a baby by the time we were 30. Given the fact that you never know how long it might take to get pregnant in the first place, or whether that pregnancy will be successful, and then the fact that you’re pregnant for 9 months anyway, we decided we should probably start trying after our honeymoon. I got pregnant straight away.

Although I knew the stats about 1 in 4 pregnancies ending in miscarriage and the possibility that something could go wrong, for once in my life I was optimistic and assumed that everything would be fine, and it was. For the most part I enjoyed my pregnancy and sailed through it and just looked forward to meeting our baby. I had some sickness but nothing horrendous. I didn’t get any weird and wonderful cravings, but I did go off some foods. I remember poor John making me a Thai green curry one night as one of my favourite dinners, and I took one look at it and couldn’t stomach it. I went and had a bowl of cereal instead.

I didn’t really mind whether we had a boy or a girl but for some reason I just kept picturing this baby as a boy. I couldn’t get it out of my head and thinking of a girl felt wrong somehow – maybe subconsciously I did want a boy. When we were offered to find out the sex at our 20 week scan I wanted to – I didn’t want to get to the birth thinking boy boy boy and then find it all a bit weird if it was a girl instead. But John was really adamant that he didn’t want to find out until the baby was born, so in the end he left the room while the sonographer told me that we were having a girl. My first response was “Are you sure?”  “Well we’re not supposed to say 100% but your baby has her legs wide open and I couldn’t have got a much better view.” Definitely a girl then! So much for my maternal instinct. I quite enjoyed having that little secret and unless John has kept quiet the last 8 years so he doesn’t burst my bubble I was pretty proud of myself that I didn’t let slip to him and he didn’t find out that we had a girl until he saw for himself.

I thought I might as well make the most of life as I knew it for the last few weeks of my pregnancy, plus I wasn’t really enjoying my job at the time, so I went on maternity leave at 32 weeks and had a lovely time seeing friends, getting to make new friends through our NCT group, and sitting in the garden reading books. All very civilized and chilled out. My due date was 24th May, which was boiling hot in 2012 and I was past the healthy pregnancy glow phase by then. I was huge and swollen. I’d had to take my rings off and my cankles were quite impressive. I had so much fluid in my legs that if I poked them my finger would leave a hole which would then slowly puff back up again. So I didn’t look great, but I felt fine. Walking around wasn’t a problem and I didn’t have back ache or hip ache or even much of a waddle.

I went a week past my due date and the midwife started talking about induction. I had two sweeps which didn’t do anything. I drank lots of raspberry leaf tea which was OK at first but by the time I had Katie I was sick of the sight of it. I happily ate spicy food. We did not have sex. I don’t know how anyone even manages it when they’re that huge!! When I was 10 days overdue we were told to head to the hospital so that I could be induced. The date was 3rd June, which is my step sister’s birthday, so I was hoping it wouldn’t be too quick and I would have the baby on 4th June so she had her ‘own’ birthday!

Oh my God induction. It was horrible. They gave me a pessary at about midday and for a few hours nothing happened. Me and John sat and played cards and watched the Queen and Prince Philip getting soaked on the Thames as it was the weekend of her Golden Jubilee. It was all very uneventful although from mid to late afternoon I was aware of feeling a bit crampy. It crept up and crept up on me until I couldn’t concentrate on cards anymore and had to keep moving positions as it was so uncomfortable. It was like permanent really bad period pain that just got worse and worse. In hindsight I should have asked more questions about induction as I’d thought I’d just go into labour and that would be that. I was prepared for painful contractions that started off slowly and got closer together. I wasn’t prepared to be in that amount of constant pain when I wasn’t even in labour. I sent John out to ask for some pain relief and he came back with paracetamol which did nothing. I sent him out again and a midwife came and gave me some codeine which she said would make me a bit drowsy and take the edge off. It didn’t. I felt like a right idiot and panicked that if I couldn’t even cope with this how would I cope with actual labour and birth?

Well it turned out actual labour was a lot better than random painful build up. John had been watching the final of The Apprentice while I rolled around trying to get comfortable, and just as the credits came up at the end I was hit with my first contraction. There was none of this gradual build up we’d been told about in NCT classes. It hit me hard and strong and from then on they came constantly every couple of minutes. Although the contractions themselves hurt a lot more than the pain I’d had before, I preferred them and I felt much more in control. Yes they were horrible but then they subsided and I wasn’t in constant pain anymore. Also this was the expected pain that meant I was properly in labour. It felt productive.

Apparently I’m immune to pain relief as I had some pethidine at some point, which again they told me would send me away with the fairies. It didn’t. It made me start throwing up and everything hurt just as much as it had before and the world didn’t go fuzzy round the edges. In the end I settled on gas and air as although it didn’t really help with the pain it was useful to have something to focus on during contractions. And there I stayed, in the delivery room puffing away on gas and air for a few hours, not necessarily loving life but managing quite nicely.

I remember it getting to midnight and being pleased I’d made it to 4th June and Katie would have her own birthday.

I remember about 1am looking at John nodding off in a chair next to me. To be fair labour must be fairly boring for the partners. It’s not like they can do much.

I remember the midwife telling me she was going to break my waters and just as she was coming at me with that thing that looks like a knitting needle they went anyway and gushed all over the bed. That was another surprise for me – I thought once your waters had broken that was it. I hadn’t realised I’d have a gush with every contraction and keep leaking all over the place. Fun times.

At some point the midwife said she’d need to get a doctor in because the baby was showing signs of distress and her heart rate kept dropping too low. They clipped a monitor onto her head. It’s funny how completely not bothered you are about having anyone shove their hands up your lady bits when you’re pregnant. A bit later they said they needed to take some blood from baby to check her oxygen levels (I think?). Along came doctor and shoved her hand up again and I’ve never known pain like it. I don’t think I’d made a fuss up until that point but I couldn’t help crying and asking her to stop it. She did it twice and the second time the midwife said usually mums have an epidural if it’s done again, and did I want one? But I said no because I (a bit too optimistically) wanted to be able to feel it when it was time to push. Whatever they found the second time though worried them enough to decide to perform an emergency C-section. I was still only 4cms dilated so it’s not like I was going to give birth any time soon.

So off we went to theatre where they gave me a spinal block and worked their magic. I remember lying there trying to absorb everything, knowing this was the moment our daughter was about to be born, but it was after 3am and the reality of it 8 years later is that I can hardly remember anything. I do remember when she was born they said she looked like one of the biggest babies they’d had for a while. When they weighed her she was 10lbs 13ozs and I was just relieved she’d come out the sun roof and not down below! I looked on my notes afterwards and Katie hadn’t scored well on her first apgar test and had needed some help breathing, but I wasn’t aware of any of that. It all just passed in a bit of a blur. I think John got to take Katie and have a cuddle with her while they stitched me up but I’m not quite sure where the time went between 3.32am when she was born, and around 5.30am when we woke parents up with the news they had a granddaughter.

John got the joys of the first poo nappy change as I was still numb from the anaesthetic and couldn’t move, ha ha. 

At some point he went home to catch up on some sleep and Katie and I were left on the ward to sleep, cuddle, feed and all the other newborn bits. Unfortunately it didn’t last long as the midwife came round to see how we were doing, and said she was going to get a doctor to come and have a look at Katie. The doctor came and said they were going to move her to the special care baby unit. John had only been at home about an hour but he turned round and came back to the hospital while Katie got taken to SCBU and I got left behind on the ward. I didn’t really get to spend any time with her for most of the day because I had to wait to get feeling back in my legs and have my catheter taken out. I got moved to a room on my own so that I wasn’t with all the other mums and their babies. It turned out that Katie’s blood sugars weren’t right and she had an infection.

The next few days were spent visiting Katie up in SCBU waiting for the doctors to get her blood sugars stabilised, expressing milk, being prodded and poked to make sure I was healing OK, and having cuddles with our new baby. I was discharged after a couple of days so we’d go home to sleep and then spend days at the hospital. 

The doctors when Katie was in special care and the midwife I had when I was in labour were brilliant. I wish I could remember the name of the midwife we had so I could have said thank you afterwards. They kept us informed all the way through but never at any point did I feel panicked. I think there was an element of self preservation as well though, of not wanting to consider how poorly Katie was, especially when I’d had such a trouble free pregnancy. The special care unit was split into two halves and for some reason I had it in my head that all the really poorly babies were over the other side and Katie’s side was for the ones whose conditions weren’t too serious. It was only after a couple of days when the doctor said they were moving her across that I looked up at the signs and realised that Katie had been on the intensive care side and was now being moved to the ‘good’ side.

Katie had been being tube fed so the last couple of days she was in hospital were just to allow us to get breast feeding established and to check that she kept gaining weight. John and I were given a room in the hospital and got to spend our first night with Katie. She wiggled and fussed all night and we were up until about 4am when a nurse came in and burped her and she went straight off to sleep! The nurse made it look so easy! 

And then, after a week in special care, Katie was discharged and we all went home together. I got lots of sympathy from people about the birth and Katie’s hospital stay and lots of comments about how traumatic it must have been. But actually we were really lucky and it genuinely didn’t feel like a difficult time. I was just happy to have our baby. It’s not like I had any previous births to compare it to. I’m glad I got to experience what labour was like but I don’t feel I missed out by not getting to the end. I never felt that I was a failure for not being able to give birth naturally and although it had been an emergency C-section, like I said the doctors and midwife had been so reassuring and calm it didn’t feel like a massively stressful situation. I also recovered really quickly from the operation. I was up and walking about later that same day and the pain wasn’t bad at all. I didn’t even finish taking all the painkillers that were prescribed. I wasn’t trying to be a hero but I didn’t need them. And although I’d never choose to have a baby in special care, in a way it was really helpful because while we were there we were shown how to bath her, I got help with breast feeding and pumping and the nurses were there whenever we had any questions. We got broken into parenthood gently and we got the happy ending every parent hopes for. Job done.

A mountain or a molehill?

Yesterday morning Katie did not want to go to school. This is nothing unusual but I asked her if there was anything particular that was bothering her and she said one of the boys in her class had told the teacher she was bullying him. I asked if he had any reason to say that, and she said she had pushed him because he was really annoying. I asked what he did that she found so annoying and she didn’t really answer, just kept saying he was too annoying. Her teacher had spoken to the class and said she expected whoever had pushed this boy to own up to it. Katie thinks her teacher knows it was her anyway.

I found this situation really hard to deal with. I don’t like to think of Katie or any of my children pushing other kids because it’s not nice and it’s not necessary. This boy in Katie’s class is obviously pretty upset by it to be telling her she’s bullying him. We have always taught our three that they should never get physical with other kids and that if someone is pushing them, or saying unkind things to them, or whatever the situation is, that they shouldn’t do it back. We have encouraged them to walk away from the situation, or if they need help dealing with it to talk to us / a trusted adult / a friend. I made it very clear to Katie that she should not have pushed the boy in her class.

I can never quite tell with Katie’s vocabulary whether she just doesn’t want to expand on things or if she literally can’t. I was trying to work out why she felt this kid was so annoying and whether he has been winding her up on purpose or whether he isn’t deliberately doing anything but Katie just objects to him for some reason – not that it matters really as she still shouldn’t have pushed him, but it would be useful to be able to put it into context a bit more. But she just repeats herself that he was annoying her and can’t / won’t give more detail. I think she feels he deserved to be pushed because he shouldn’t have annoyed her, but I’m not sure and may well be doing her a disservice by putting words into her mouth.

Firstly I encouraged Katie to tell the boy she pushed that she was sorry for pushing him, but even here I’m not sure this was the right thing. I told her she doesn’t have to be sorry that she doesn’t like him, or that she finds him annoying, or that she doesn’t want to speak to him – those things are all her opinions and that’s fine. But she shouldn’t push him because of any of those things. The problem here is that saying sorry suggests you understand that what you did was wrong and you want to make sure it doesn’t happen again, and I’m not sure Katie does. All she sees is that this boy was bugging her and she pushed him. She knows what she did was wrong because she knows she shouldn’t push, but I’m not sure she’s sorry she did it so should she say sorry to him just because that’s the expectation, or should she not say it if she doesn’t mean it?

We talked about feeling frustrated or angry with someone and that she needs to find other ways to let those emotions out that don’t include physical aggression. She said this happened in the playground so I suggested if she’s angry in the playground she stamps her feet / goes off and yells / jumps up and down / anything else she can think of. If she’s angry in the classroom maybe she could ask to leave the room / focus on breathing / distract herself with fiddle toys.

I also encouraged her to own up to her teacher and tell her she was the one who pushed this boy. Katie said she was scared to tell her and we definitely find that when she’s upset or stressed her words can fail her and she totally clams up. So I said she could write a note to her teacher and if she couldn’t talk to her she could give her the note so she had a back up option.

Other than emphasise that she shouldn’t have pushed the boy, make suggestions as to what she could do next time she’s annoyed, and encourage her to own up to her teacher and apologise to the boy, I’ve left it there. I’ve told her these are all suggestions but it’s her decision whether she speaks to her teacher and the boy or not. There will presumably be consequences for Katie at school for what she did, but there won’t be at home. It’s something that happened at school, that I’m not sure I have all the facts on, that school haven’t spoken to me about directly.

Also although I’m not at all pleased that Katie has pushed another child, I am pleased that she chose to speak to me about it. The last thing I would want is for her to open up to me and then get shouted at or punished and feel that she can’t talk to me again in the future. I hope I got the balance right between explaining that she was wrong but working out what to do about it rather than making her feel rubbish about herself.

If this was a one off I probably wouldn’t be stewing on it as much, because to be honest all kids give each other a shove every now and again. The kids in her year are still only 8 and 9 years old so although yes they know better than to push each other, they are also still learning to control themselves and their emotions. I remember being so cross with my sister once when we were little (I can’t remember why) and she was just in front of me with her back turned…and I was SO angry I didn’t think about it I just yanked her ponytail as hard as I could and pulled her head back…cue tears from my sister and a bollocking for me! It’s not like I’m a saint and I don’t expect my kids to be either, but this has the makings of developing into a bit of a theme with Katie recently. Her teacher spoke to me about something else with another boy in her class a few weeks ago where no one had been able to get to the bottom of who had done what but they were both accusing each other of hitting the other one. Katie was also upset one day because she said she’d accidentally knocked her friend over and was worried she’d be angry with her.

I really really don’t want to be that parent who makes excuses for their child or lets them get away with inappropriate behaviour. I also don’t want to put everything down to autism. But….there is a level of complexity with Katie that just isn’t there with my other two. I worry about her more, I second guess my parenting with her more, I wonder about her understanding or interpretation of things more. I’m very aware that me, John, Alice and Matthew can have a conversation and all get the same meaning out of it, and Katie will get something totally different from it. We hear all the time that behaviour is communication and that ‘bad’ or ‘naughty’ behaviour is generally a sign of distress. We already know that Katie is distressed just by being at school. The noise levels overwhelm her, the social interactions exhaust her, the feeling of being different grinds her down, small changes in routine (changing where the kids are sitting, switching lessons round, a teacher being absent etc) escalate her anxiety. There are very few accommodations being made for her at her school in spite of repeated requests, and one of the things we have asked for throughout this academic year is ELSA (Emotional Literacy Support Assistant). It’s hard for any kids to manage big emotions, never mind Katie whose emotional literacy is not great. She feels her emotions so strongly but doesn’t have a good understanding of them so doesn’t know what to do about them. She often doesn’t understand other people’s emotions or motivations. She is very black and white in her thinking about people and either thinks they are amazing or horrible. Maybe I’m pinning my hopes too much on what ELSA could achieve but surely Katie is exactly the type of child they’re there for? So far she’s just had a handful of sporadic sessions spread over a 6 month period. There is nothing consistent for her at all.

When you add up the daily overwhelm, anxiety, irritation, and lack of support it’s not surprising should could lash out and give someone a push. I’m still not saying it’s OK she’s done that but it’s a case of looking at the environment she’s in and the support mechanisms in place.

I’m not saying we’re perfect and school isn’t but at least I’m confident that we’re doing what we can for Katie at home and in the meantime also still learning and understanding more about autism so that we can continue to adapt and support her. I just can’t say that about her school at all. It’s like talking to a brick wall. I phone, I email, I get support from the autism advisors at the council, I repeat myself non stop, and either nothing changes or the changes are so minimal and slow to get put in place that they’re pointless. It’s beyond frustrating for me and it’s beyond unacceptable for Katie. I’m keeping everything crossed that she gets accepted to the new school and things improve for her as far as school is concerned. If it doesn’t I really don’t know what the next step would be.

In the meantime I’m left wondering. Did I deal with this in the right way? Am I making too much of it? Am I not making enough of it? Does Katie feel OK about our conversation? Is she going to get into trouble from school? Am I just making excuses for her?

School support (or not)

I’m eternally grateful to Amanda for suggesting we should go and get Katie assessed. I hate to think where we would be right now if it wasn’t for her. I can’t deny there are negatives to Katie’s diagnosis – I don’t think any parent would choose for their child to face difficulties in life if they could avoid it, and for me this does include autism, not because of autism itself but because of the general lack of understanding or acceptance of it. There is no avoiding the fact that Katie is living in a world that isn’t designed for her, that she spends an awful lot of her energy just getting through situations that most people don’t think twice about, and that while we can provide a more supportive and accommodating environment for her at home she doesn’t spend all her time at home. It’s already a battle to get her those accommodations or understanding in other places, especially school. But, on the whole her diagnosis has been a positive. It has definitely made me more compassionate and relaxed in my parenting (and I wish I had been more like that anyway and not needed a diagnosis to rethink things a bit), it has opened up conversations with Katie, and it has given us all a better understanding of why she feels and behaves the way she does sometimes. At the moment she views autism quite negatively but I really hope with more time and more talking she can accept it and acknowledge the difficulties it brings but also the positives.

Most of the changes we’ve brought about for Katie at home have been small but make a big difference to her. She has more downtime after school where she can do whatever she wants. We don’t make demands of her and we don’t ask her about her day. If she wants to be completely by herself she can and we leave her to it instead of encouraging her to join in with us. When she’s feeling insecure at bedtimes the priority isn’t to reason with her and get her in bed. The priority is to make her feel less alone and more secure, which these days means staying in her room with her until she’s asleep because that’s what she’s asked us to do. We are more lenient on screen time, especially given that a lot of autistic people find online friendships easier to manage than face to face ones. We give more warning on transitions where possible as it helps her feel more in control. Etc etc.

I think (hope) that these changes at home have given Katie more confidence. In hindsight I think she was masking at home as well as at school, which I feel really bad about. But since we have changed things up she seems ‘more autistic.’ I know that’s completely the wrong way to phrase it as if you’re autistic you’re autistic, but she seems more comfortable with telling us what she needs or what’s bothering her and also more open to trying things to calm down when she’s heading for a meltdown. Most things are trial and error for now but she / we have noticed that she likes pressure, so we’ve tried things like a weighted blanket, squeezing her wrists, really tight hugs etc. She also likes having her swimming hat on because of the pressure on her head. She’s told us things we never knew before, like that it’s painful for her to wear tights because it feels like pins sticking into her legs, and that she hates standing in line or in a queue because she doesn’t like being jostled around and she worries about people bumping into her.

The same is true at school. There are loads of small measures they can implement that actually don’t take any time or resource but make a massive difference just by taking away some stresses for Katie, such as:

  • Sitting her on the end of a row instead of in the middle of the classroom so she doesn’t have noise coming at her from all directions and can easily leave if she’s overwhelmed
  • Allowing access to sensory / fiddle toys. These are usually pretty discrete and can just be kept in a pocket or on the table
  • Teachers being aware that she is oversensitive to tone and perceives any tone of irritation or impatience as being shouted at
  • Giving access to a quiet space for Katie to use if the noise is too much for her or she needs some time alone
  • Where possible giving notice if there is a change in routine eg a substitute teacher or if PE changes to a different day
  • Letting her fidget in her seat or have her head in her hands / arms without telling her to sit up straight or look at the board. When she is doing these things she’s keeping herself regulated and avoiding too much sensory input. She is still listening to what is being said even if it doesn’t always look that way
  • Access to ELSA support
  • Letting her go out to break or lunch on her own instead of lining up with everyone
  • Understanding that she doesn’t feel the cold and is usually too hot so if she wants to go outside without a coat in the cold weather that’s fine and she will be more comfortable that way

Unfortunately for Katie getting her school to acknowledge any of this or implement any support has so far proved unbelievably difficult. I can (sort of) understand that school kept reassuring us and telling us there was no need to worry about Katie. I am quite resentful that even having observed Katie the SENCO said there was no evidence to support a CAMHS referral. It’s one thing Katie’s teachers not noticing any issues but presumably a SENCO who takes time to specifically observe a child should be able to spot certain signs. Instead her refusal to support a CAMHS referral was the main factor that led us to pay a small fortune for a private assessment. I am very resentful of their attitude now that Katie has a diagnosis.

The assessment system is ridiculously over reliant on school input. We were told that we could self refer to CAMHS but that basically without input or support from school we would be at the bottom of the pecking order and probably wouldn’t get taken seriously. Our experience has been that parents aren’t really listened to and ‘professional’ opinions are much more important. Given that most autistic people, and especially autistic girls, are able to mask to varying degrees, this doesn’t make sense. Parents are the ones who see their children day in day out, who know them, who have the gut feelings about their children. I’m sure there are a few out there with dodgy motivation but most parents just want the best for their children and they need to be listened to more than they are.

I was way too optimistic in my belief that a diagnosis would mean that Katie could have some support and we would finally be believed that she needed it. I stupidly thought we could arrange a zoom call (no going into school in person, thanks COVID) with the SENCO and Katie’s teacher so they could understand some of her issues and make suggestions as to how they could help. Instead, having asked to speak to the SENCO I had to chase it up again before she bothered to phone me back, at which point the first thing she said was “Katie is keeping up academically and we certainly wouldn’t be supporting an EHCP”, (I hadn’t asked for one and didn’t even know what one was at that point), told me that Katie seemed fine at school so there really wasn’t much they needed to do, and got me off the phone as quickly as possible. That pretty much set the tone for how things have gone since. Any conversation I’ve had with the SENCO she’s been at great pains to point out to me that Katie doesn’t seem any different from the other kids, there is no evidence that she’s struggling at school, and she gets off the phone as soon as possible without actually doing anything helpful or productive. This is in spite of the fact that Katie’s diagnosis report mentions several times how extensively she masks, particularly at school, and that this doesn’t mean she doesn’t need support. The SENCO pushes back on everything I say and the inference is always that Katie is exaggerating or lying. Katie is constantly coming home from school saying she was told off for not listening (because she’s not looking up) or had her fiddle toys taken away from her and told they’re distracting her.

I don’t know if this is just due to the SENCO at Katie’s school being incompetent or if this is a common issue. Unfortunately from the support groups I’ve joined it seems like a relatively common theme. Autistic girls (big generalisation here) often don’t fall behind academically, they’re not getting into fights or trashing the classroom, and they’re not disruptive so they’re not seen as needing support. They sit there with their heads down, quietly surviving the school day, and then they get home and fall to pieces, but schools don’t see it so don’t take any accountability. This is definitely the case for us. Most of Katie’s meltdowns are related to overload from school and I’m convinced if they would just put some of the above measures in place it would make her school life so much more bearable. I am becoming a problem parent to school, not through choice but because I don’t see it as acceptable in any way that just because Katie doesn’t directly present as a ‘nuisance’ to her school they can’t be bothered to support her.

I have spoken a lot with the autism advice team at our local council who were really helpful and confirmed that the accommodations we’d asked for were 100% reasonable (but I’m left wondering why we had to ask for them in the first place and why school weren’t making suggestions themselves?). They told us to ask school for a support and achievement plan, which we did, and got sent some cruddy document that may as well have been written for another child because it didn’t resemble Katie’s situation at all and I had to ask them to re-do it. And then chase them up on it. The SAP is meant to be done in consultation with parents but Katie’s school never even told us they’d done one for her. I wouldn’t have known anything about it if the council hadn’t mentioned it. The council also wrote an anxiety management plan for Katie and sent it to her school, who didn’t acknowledge it and have basically ignored it. The autism advisors at the council can only advise (clue’s in the title!), they can’t actually make school implement any of their suggestions.

ELSA support was one thing school did say they could provide from October half term, but then it never really materialised. She had one random session before Christmas, and then in early March they told us Katie would be having ELSA every Monday at 2pm – one 1:1 session followed by a group session. She had three weeks of this and then they stopped. Throughout this I have chased, I have made a nuisance of myself, I got SENDIASS involved, and still they’ve essentially only managed 4 sessions on a Monday afternoon in 6 months. Katie doesn’t know week to week whether she’s staying in class on a Monday afternoon or whether she’s having ELSA sessions. On the days it hasn’t happened no one has told her it’s not happening, it’s just a case that no one turns up to collect her so she stays in the classroom. In her 1:1 sessions she has already had three different members of staff working with her so she hasn’t built a relationship with anyone or had any continuity. This is in spite of us reminding school on several occasions that she struggles when her routine is changed and could they give us notice where possible.

It’s a tough balance because I want to try and have a positive relationship with school. It’s not just Katie that goes there, Alice is there too and Matthew will be starting in September. But when they won’t budge at what point do I give up on that and go to the board of governors or make a formal complaint? One way or another things have got to change for Katie at school or she’s not going to survive it. Her self esteem is non existent and her anxiety is through the roof. She has been through a period of self harm. It’s not school’s fault that she struggles with anxiety, but they are absolutely accountable if they refuse to do anything to acknowledge her autism or to make adjustments for her.

We have talked about whether to move Katie to another school or whether to home school her. It makes me angry that we’ve even had to consider these. It shouldn’t be such a battle for her to be comfortable at school. But if she stays where she is and nothing changes she’s going to end up school refusing and she’s not going to make it to secondary school. She’s going to break soon. Ultimately we have now found another school that Katie has visited with us and said she would like to move to. We’ve made an application to the council for her to start there in September when she moves into year 5.

I know parents shouldn’t compare their children but it’s sad that the experience the girls are having of school are such worlds apart. Katie started off indifferent to school, which quickly changed to disliking it and now she hates it. Every morning is a mission to get her there and I feel awful forcing her every day to go somewhere she’s unhappy. She’s constantly saying she doesn’t want to be there and saying that she has a headache or a tummy ache. She’s not engaged with her lessons and hates doing homework (another thing we don’t force anymore). It’s an endurance test for her to get through every day. Alice loves school. She was bored silly in lockdown because she is sociable and missed her friends. She goes bounding in each day and comes home telling us all about what she played, who she played with, who said and did what, a lesson she particularly enjoyed. She looks forward to going back to school after each holiday. She is having the school experience that parents want for their children. I don’t expect Katie will ever get to that stage, but if she could get to the point where she doesn’t mind going to school that would be a big win. If Katie’s school could have accommodated neurodiversity more willingly that would have been a bigger win. She should not have had to endure such a miserable experience or be in the position that she’s moving schools just to function.  

Lockdown 1

The first lockdown last year brought on a whole range of emotions for me, most of which were focused on my immediate family situation rather than the bigger picture of an international health crisis. The thought of having all three children at home 24/7 with no playgroups, no extra curricular activities, and no family or friends to see quite honestly terrified me. And then along came the ever present mum guilt that I could feel so negatively about spending time with my own children who I’d chosen to have. And the guilt that it was mainly the thought of how Katie would cope and how she would impact the rest of us that scared me.

Knowing that lockdown was coming felt like a huge storm was looming over us and about to break. I cried when school finished on the Friday, knowing that it was our last day of ‘normal’ and not knowing when we would be able to see anyone again. The times that Katie really seemed to struggle with her behaviour and emotions were the times when she couldn’t get the level of attention she wanted and there were no other distractions or structure to her day…which is basically the environment we were going to be forced to be in for an unknown amount of time. I worried about her relationship with Alice and how it would suffer, and I worried about Alice herself as Katie often seemed to vent her frustrations directly at her. I also panicked about how on earth I was going to work three days a week as well as look after three children at different levels of education and with different interests.

Over that weekend I planned and planned. Given that Katie doesn’t like unstructured time I decided to treat Monday to Friday as though they were still at school and I made timetables for each day. This included getting up, having breakfast and getting dressed as we would have done normally on a school day, and ‘school’ starting at 9.00. I split the day into different activities such as reading, exercise, drawing / painting, doing work sheets, calling a friend, break time etc which lasted 9-3.30, ie the equivalent of a school day. It meant that when Katie asked what we were doing that day I could give her a clear answer and it immediately got the days off to a better start.

Actually lockdown was far easier and went far better than I ever expected. We were really lucky that both John and I were furloughed so we had nothing else to do other than concentrate on the kids and their well being and education. With two of us there as well it meant that Katie could have a bit more of that one to one time that she often craves. It also gave us the option as parents to take a breather if we needed it, so we weren’t getting too emotional and snapping at the kids.

As for worrying that Katie would struggle to cope during lockdown, I couldn’t have been more wrong. She loved it. The meltdowns and anxiety that often showed themselves at bedtime stopped. She seemed far more relaxed and content in herself. She had so much more patience with Alice and Matthew and could deal with it so much better when they annoyed her. She even started playing with them, which never really happened before. Most days during lockdown she told me how much she loved it and that she didn’t want things to go back to normal. There didn’t even really seem to be anyone that she missed seeing – she could talk to people online and that seemed to be enough for her. She could spend time gardening or cooking or knitting, all of which were things she enjoyed doing but never had that much time to do in our normal busy life.

It brought it home to me how stressful she found normal life and made me quite emotional to see how she was blossoming without all the external ‘noise’. That’s not to say that every day of lockdown was amazing because it wasn’t. Of course there were times we all drove each other nuts or were bored to tears, but it was a collective response to the weird situation we were all in rather than Katie’s emotions dictating the experience of the rest of the family. Overall lockdown turned out to be a pretty positive experience. John being furloughed was just great, because he got to spend so much quality time with the kids that he never would have been able to have normally and probably won’t again. We worked out they saw more of him in that 10 week period than they usually would in a year. And me and John made a pretty good team. I heard so many couples say they couldn’t wait to get their other half out of their hair but I loved having John around more and I missed him when he went back to work in June.

Covid-19 generally sucks, but as far as Katie was concerned in that first lockdown it was just impossible to ignore what a difference it had made for her. In my mind it reinforced everything that had been suggested to us about Katie appearing to cope at school but actually just masking how difficult she found it and how exhausted she must be. This was proven again when the kids all went back to school in September, and within days it was like lockdown had never happened. We went straight back to long drawn out bedtimes with lots of crying and worrying about anything and everything, overreactions to tiny things (from our point of view, obviously they weren’t tiny things to Katie) and a complete inability to compromise or see anything from someone else’s point of view. Again I felt that we needed that bit of outside help and guidance to encourage Katie to navigate her way through each day that bit more easily.

During the summer holidays when it was announced that children would be returning to school full time from September, I emailed Katie’s school to remind them that before lockdown we had been due to discuss her behaviour. I asked them if we could pick back up again as I felt she would need to be supported in returning to school. I didn’t get a response. I contacted them again and this time was told that our details had been passed to their family support worker who would be in touch with me. They didn’t give a time frame and by the time they did re-open in September I still hadn’t heard anything further which didn’t sit well at all with me.

I also got back in contact with the private psychologist we’d seen, as they had also had to stop working during lockdown but were now up and running again. They immediately arranged for us to get the ball rolling on the ASD diagnostic assessment which consisted of three parts:

1 – Observing Katie within their clinic

2 – An in depth interview with me about her developmental history and social skills

3 – Ideally observing Katie at school but if this wasn’t possible then asking school to complete a questionnaire

Katie had her assessments in August and September (2020) and at the start of October we received an email that said “We have agreed as a team that Katie meets the DSM-V criteria for Autism Spectrum Disorder and have issued a diagnosis.”

Getting an assessment

Having been advised that to get a referral to CAMHS I would need input from school or the GP, I went to the GP. I did a ‘brain dump’ of Katie when she was at her best and Katie when she was struggling, wrote it all down and asked him to read it, because I knew if I just tried to explain at an appointment I’d forget things or he’d interrupt to ask questions. Based on what I’d written the GP said they would support a CAMHS referral so I thought that would be it. But he phoned me the next day to say he’d made a mistake and the surgery’s policy was to only refer if they had input from school as well. School observed Katie at my request and told me there was no cause for concern and they wouldn’t support a CAMHS referral.

The Head told me they could put her on the waiting list for the Emotional Health Academy but that the school SENCO lead was on long term sick leave, so the Head would have to do it herself. She was at great pains to tell me that she was really busy so she couldn’t guarantee anything, and the waiting list for the Emotional Health Academy was about a year. The EHA might then support a referral to CAMHS, which had a 2 year waiting list, so basically we’d be looking at about a 3 year wait even to get Katie assessed, at which point she’d be coming up to the end of primary school. I got the distinct impression she thought I was a neurotic hypochondriac who couldn’t control my child and she wanted me to go away. She certainly wasn’t very encouraging.

In the meantime I also got in touch with the autism advisor for our local council who listened to what I had to say and said Katie sounded like a very typical autistic girl, i.e. she was masking successfully at school but it was taking so much energy and effort that when she got home she would go into meltdown (obviously this can apply to boys too but it seems to be more the case with girls).

Given the waiting lists we decided to look into getting Katie assessed privately and found a psychologist at a place that only had a waiting list of a couple of months and who the autism advisor at the council said was a good company to use. They suggested that rather than dive straight into a full on autism assessment they meet Katie and have an initial chat with her so that they could then advise us as to whether they thought she needed the full assessment. I went with Katie for this bit and it was interesting to see her response to some of their questions. One part of it was to look at pictures of different scenarios and tell the psychologist about it.

Picture of a boy leaning against a gate with his shoulders hunched and looking down

Katie – it’s a boy standing in a field

Psychologist – anything else?

Katie – there’s a gate in the field and the boy is leaning on it

Psychologist – how do you think he might be feeling?

Katie – I don’t know

Picture of a mum and dad playing in the background with their baby. A slightly older child is in the foreground looking sad

Katie – there’s a mum and dad with a baby, and the baby has a big brother

There was no mention of the emotion behind the pictures or a guess at the wider context. I didn’t know if this was because Katie wasn’t engaged in the exercise or because she could only understand the literal scene.

She also asked Katie to tell her about her friends, but she didn’t talk about anyone from school or her couple of friends outside of school. She talked about Rose, her friend from preschool who she hadn’t seen in about 2 years at this point, which just made my heart break for her. And she talked about my cousin’s children who we had stayed with on holiday but didn’t see regularly at all. There was a real lack of understanding about friendship, which took me by surprise a bit.

The psychologist’s recommendation was that yes Katie should have a diagnostic assessment for autism.

In the meantime, in spite of school insisting that there was no need for any referrals, I got a call one Friday afternoon when I was at work. It was Katie’s childminder, who said that Katie was refusing to leave school and go home with her. She was crying in the playground and wouldn’t let the childminder near her when I asked her to put the phone to Katie’s ear so I could try talking to her. Her teacher came on the line saying she didn’t know what had happened or why Katie was so upset. In the end the childminder had to leave as she had other children she had to take home with her (including Alice and Matthew) and Katie’s teacher asked me to come to school to get her. By this point Katie had run off to a corner of the playground and pulled her coat on back to front so that the hood was up over her face, and was refusing to move. When I got to school they had managed to bring her back in to the classroom and she was quiet but she was sitting on a chair facing the wall (her choice, she hadn’t been made to sit like that!) and still had her hood up over her face. Again her teacher was really apologetic saying she didn’t know what had happened. I was massively pissed off by this point. This is what I keep trying to explain! She has meltdowns all the time at home. There was probably no massive issue, no argument with a friend, no nasty incident. She’s exhausted by trying to keep it together and probably something that would be insignificant to us has tipped her over the edge. Now do you believe me? You keep telling me there’s nothing going on and yet we’re now at the point where you’ve pulled me out of work to come and do your job for you. If there’s nothing wrong here you should have been able to calm Katie down yourselves! I went and sat with Katie and gave her a tight hug and let her cry for a few minutes. Then I gave her my car keys and told her to concentrate on them, how they felt in her hands, the noise they made. After about 10 minutes she was ready to leave school and come home with me. Off we went with her teacher promising that she would arrange an appointment for me to come and speak to the Head and see what could be done, which was swiftly arranged for the next week. It made me feel really frustrated that I’d been bashing my head against a brick wall for the last 6 months with school and basically being made to feel that I was making it all up, but as soon as they saw something ‘not normal’ for themselves, something that actually affected them, they were suddenly willing to engage.

I was feeling pretty optimistic that we had agreed with the psychologist that we’d get an assessment underway, and I had an appointment with school to actually talk things through. But this was March 2020 so then Covid-19 arrived, everything was cancelled, and we went into lockdown.

I’m sure it’s nothing, but….

This really isn’t intended to be a blog about autism or about me being an ‘autism mum’ – because I’m not autistic and I’m Katie’s mum not an autism mum. I also have a long way to go in learning more about autism and supporting Katie. This is literally just to document some of the key times of my life as a mum, but right now a lot of my time is taken up with navigating Katie’s relatively recent diagnosis (October 2020). She has found the last couple of years at school incredibly difficult to cope with and we have found it unbelievably hard firstly to even get a diagnosis, and secondly to get Katie support or to know which organisations we can turn to for advice. School, CAMHS, the Emotional Health Academy, the GP, are all services we have turned to and not really made any progress with. The GP was helpful but all roads seem to lead to CAMHS so she referred us there and they have done….nothing.

Mostly at the moment it feels as though we’re stumbling around in the dark and spending a lot of time sending emails, making phone calls, having the same conversations on loop and not much changes. The sources that have been the most help haven’t been the ‘official’ ones, but groups I’ve joined on facebook or practitioners I’ve started following on social media.  

I’ve been writing a fair bit recently just to try and get my own thoughts in order. One question I’ve asked a lot is why didn’t we pick up on Katie’s autism earlier? If we had understood earlier could we have been better parents than we have been up to this point? Would she be in a better place? So I thought back about Katie as a baby, at preschool and starting school and ended up writing some of the background down to how we came about eventually realising that she ought to be assessed for autism.

My worries about Katie didn’t start until she was 4 and went to primary school. As a baby she was the most content out of my three. She was so easy to read (fingers in mouth and curling her hair round, must be time for a nap!) and I felt very connected and in tune with her. She sat early and walked late so we would sit and play together, visit family and see other baby and mum friends where I would watch the other mums chase after their little ones while Katie gave me an easy life and sat on the floor going nowhere. She had my undivided attention for her first 2 years until we had Alice, and it was pretty much a birds singing, sun shining, parenthood is the best thing ever 2 years. I don’t think I’m looking back through rose tinted glasses either, as we’d always thought we’d have another baby after Katie but it did cross my mind that I was having such a great time with her that it wouldn’t matter if she was the only one.

Then she moved on to preschool and loved it. She thought her key worker was the best person ever and she found herself a best friend who she talked about non stop. She didn’t seem particularly interested in anyone else and occasionally I worried that she hadn’t seemed to make any other friends, but she was having such a good time and her friendship with Rose was based on mutual adoration so I just patted myself on the back that we’d chosen a good preschool and that she was happy.

Come primary school I was excited and optimistic for Katie to have the same amazing time that she’d had at preschool, and I was probably a bit naïve and a bit smug by this point. Rose wasn’t going to the same school but we had talked to Katie about how they could still have playdates and how she would make new friends at school. Off she went perfectly happily and continued to do so each day. Parents evenings and chats with teachers suggested she had settled down well and although she was a summer baby and had only recently turned 4 when she started school she was keeping up just fine.

And yet….

From very early on at primary school I’ve worried. She didn’t find another Rose and seemed to find it very difficult to settle down and make friends. Not in an obvious “I don’t want to go to school, no one likes me” way, she’s never been bullied and as far as I can tell the other kids like her well enough. But she never seemed to have any particular friendships and would never tell me anything about her school day. If I did finally manage to coax any information out of her it would be something about one of her lessons or what she ate for lunch, never about who she had spoken to or played with. She only occasionally got invited on playdates or to birthday parties. If I did ever ask her specifically who she’d played with or eaten lunch with (and I didn’t very often as I didn’t want to turn it into a big deal or let her know I was worrying) she often said she was by herself. If I asked her who she liked or who she wanted to play with the response was usually “I don’t really like anyone in my year.” It’s a year group of 60.

At school parents evenings the first question I’d always ask her teachers was how she was doing socially. Every time they’d look slightly taken aback like this was an odd question, and follow it with a slightly vague “oh yes, she’s fine.” After her first year of not really seeming to like the other kids that much, we moved into year 1 where she latched on to a girl called Abbie and all we heard about was Abbie this and Abbie that. When another girl in their year moved to a new area and left school Abbie cried because she would miss her. Katie was overjoyed because it meant one less person to share Abbie with. I was very conscious that this was not the same mutually adoring friendship that she had had with Rose – Abbie seemed like a very sociable girl who was happy enough to spend time with Katie but was also popular with the other kids and wanted to play with them too. I worried that this was not a healthy relationship on Katie’s part. But on we went into year 2, and actually this was the one year of school where I felt Katie had finally found her feet. Her and Abbie gradually drifted apart with no great drama and she made 3 new friends Molly, Emma and Phoebe. She started being invited to their houses and birthdays and seemed finally settled. Never going to be the social butterfly of the class, but a happy girl with a small group of friends. What more could I ask? She got a lovely report from her year 2 teacher, got put in the same class as her three new friends for the next school year, and so I was feeling really optimistic about year 3.

Year 3 hit us like a tonne of bricks and Katie massively struggled to cope with the transition from infants to juniors. This didn’t entail a move to a new school, but as a junior she was in a new block at her school and in a new playground which held all the kids from year 3 to year 6. She didn’t like being surrounded by all the bigger kids and found the whole area intimidating, often spending the whole lunch break eating really slowly so she didn’t have to go outside, or taking herself off to the quiet room. Bedtimes took all evening as she was up crying and worrying about things she couldn’t or wouldn’t articulate. Everything manifested itself as a tummy ache and a fear of being sick. It wasn’t unusual for her to be up until past 10.00 when her bedtime was supposed to be 7.30/8. She stopped eating. My toddler who used to joyously shove any food she was given down her throat with appreciative ‘mmmm’ noises now stared at a plate of food with no interest. She wouldn’t eat breakfast. She brought her packed lunch home from school each day with literally one bite taken out of a sandwich and everything else untouched. She would sit at the table at dinner chewing endlessly on one mouthful before finally swallowing. And I mean endlessly. She could sit and chew on one mouthful for half an hour at a time.

After spending the last three years worrying on an off about Katie but never quite being able to put my finger on anything and reassuring myself I was just being silly, I went in to school to speak to her teachers and voice my concerns. Although they listened I very much got the feeling that I was viewed as just another stressed mum who didn’t know how to deal with her own child – which was true I suppose. “Don’t worry, lots of children find it a big leap from year 2 to year 3.” “We’ll keep an eye on her but I’m sure she’ll settle down in a couple of weeks.” “We understand what you’re saying but we wouldn’t have flagged any concerns to you.” In the end they said they could put her on the waiting list for ELSA support – “but the waiting list is quite long so it’s not likely anything will happen until next term.”

Given that we were now faced with a non-sleeping non-eating 7 year old I didn’t want to wait weeks until the next term. I came across a lady who was local to us who offered sessions to help children understand different emotions and ways to regulate and manage them. It was available for up to 6 children at a time but as it happened Katie and I were the only ones booked in at that particular time, so Katie had 6 one-to-one sessions lasting two hours each. She benefited hugely from them as they allowed her to relax, use craft (which she loves anyway) to explore emotions and increase confidence and self esteem, and learn some breathing exercises to help her feel calmer. She looked forward to every session and we were able to take what we had learned and apply it in every day life, which definitely helped with the eating and sleeping issues. After Katie had completed the course the lady who ran it, Amanda, asked to come round for a coffee and a catch up, at which point she said that she was sure it would have crossed my mind already but she believed that Katie was autistic and strongly recommended that we get her assessed.

That was a bit of a shock. Yes I was worried about Katie, yes I had got to the point where I felt we/she needed outside help, no it hadn’t crossed my mind for a second that she might be autistic. I didn’t really know anything about autism and thought at that point that autistic kids were often non verbal and spent their time relentlessly lining things up or showing off the scale mathematical abilities…which sounds pretty ignorant now. Katie really enjoyed the sessions we’d had with Amanda and had been chatty and co-operative at each one, so Amanda had only ever seen her at her best and I wasn’t sure what she’d picked up on that would make her suggest autism. She said Katie’s need to be in control was the red flag to her. She also explained that girls are generally much better at masking their autism than boys, so often don’t get noticed or diagnosed in primary school but then struggle with the added pressures at secondary school because they haven’t been given coping mechanisms at a younger age.

I probably should have known better than to jump on google that evening when the kids were in bed and start reading about autistic girls as it made fairly bleak reading. I learned that autism was often linked to anxiety, depression, and difficulty in maintaining jobs and relationships. The life expectancy for autistic people is 20-30 years less than neurotypical people due to the high suicide rate. I didn’t want this for Katie but at the same time I couldn’t escape the fact that she was definitely finding life harder than a 7 year old should. It’s a bit of a cliché but it was true to say that although she had times where she seemed at ease and carefree and would goof around and be herself, for the most part I felt she was surviving rather than thriving.

It was also quite a relief to hear Amanda talking about her observations of Katie. I’d spent so long worrying but not quite being able to put my finger on why, or telling myself it was just a phase, or that Katie was just a bit more highly strung and sensitive than Alice and Matthew, that it made a difference to suddenly feel validated – no I wasn’t worrying about nothing and yes this was something that should be investigated further. I’d also started to really doubt myself as a mum as I couldn’t avoid the fact that I saw Katie at her most difficult and the thoughts were creeping in that maybe this was down to me not supporting her properly or not being good enough. I felt very grateful for Amanda’s comment “no, it’s because you know her better than anyone else. Trust your instincts.” Actually, the reason I saw a different side to her was because she really struggles in an unstructured environment where she’s not getting one to one attention, i.e. the times when it’s just me and the kids after school or on Saturdays. I was also usually the one with her when she came home from school or the childminder’s – both environments that she didn’t like. I am her constant and her safe point and I am the one she’s going to let out all that stress to.

Other people saw her in a different light, even close family. When we were with grandparents there would be enough adults there that Katie could ask one of them to read her a story or play with her and she would have someone’s full attention. When we were at my sister’s she would disappear off happily with her cousin and they would play one to one. On Sundays when John didn’t work and we were all together as a family, more often than not one of us would end up doing something with Katie and one of us would be with the other two. These were all times when she could cope better.

I had no idea how to get an ASD assessment but learned that the process was to get a referral for CAMHS which could come from school or the GP. As I had already voiced my concerns to school and more or less been told not to worry, I booked an appointment with the GP. And so began the process of trying to get a foot in the door of Child and Adolescent Mental Health Service….

The Start!

When I was younger I used to write in a diary, from when I was 11 right up until I was 28 and about to give birth to my first baby. I’ve always been a bit of a talker and like to get things off my chest, but after I became a mum I never had time to write a diary anymore. I haven’t written for nearly 9 years now but those 9 years have been life changing and I don’t want to forget about some of the key moments.

Who knows if anyone will read this or if it will end up as a record just for me – either way is fine. There are millions of 30 something mums out there and I’m nothing special. But I don’t want to lose the key memories of my kids as they grow up and I don’t want to forget those frantic early years of having babies and toddlers. Some of the ways I’ve experienced parenthood are probably exactly the same as all those other millions of mums. Some of them I’ve experienced differently to other mums I know and it would be interesting to know if I’m alone in that or if there are others out there too. So some of the things I’ll write here will be historical – my pregnancies, birth stories, experience of PND, what the kids were like as babies etc. The same experiences so many others have had, but also unique to me.

Life at the moment feels full on so I want to record some more current stuff as well, experiences we’re having now. My oldest daughter has recently been diagnosed as autistic, is struggling at school, and needing support so that’s our focus at the moment but there will be other things too.

Because I have no idea who if anyone will read this and I haven’t sought permission from my small people to talk about them publicly, I’m going to keep them anonymous and the names I use here aren’t their real names. Our family is me (Sam), my husband (John) and our three small people Katie who is 8, Alice who is 6 and Matthew who is 4, plus our psychotic but very loving cat Fred and Katie’s two guinea pigs.