Katie on school

I wrote a couple of weeks ago that my application for an EHC assessment for Katie was rejected (on the basis that she’s doing fine academically – no mention of social or emotional difficulties). I have put in an appeal and am now waiting on the outcome of that. As some additional evidence I sat down with Katie over the course of two evenings and did an ‘interview’ with her. She talked and I typed!

I tried really hard to make sure I wasn’t leading her or putting words in her mouth. I just asked her to talk me through her school day. What is the best part of school? What is the worst part? When you get to breakfast club what do you like or not like? Why? What is your classroom like? How does wearing your school uniform feel? Etc.

Katie doesn’t like talking about school and generally doesn’t like telling me about her day. She found doing this quite difficult and got tearful at points, but she also wanted to do it and gave permission for me to share it because she wants something to change. She’s fed up (and so am I) of feeling unseen and unheard. She needs to be given more support and an opportunity to start secondary school in an environment / setting that isn’t going to be so challenging for her that it causes damage that can’t be reversed.

“I feel sad about going back to school. Most of the teachers shout a lot about people fidgeting on their chairs or if we don’t understand the work. Children grab you all the time, it hurts and they don’t let go. It makes me worried. School makes my head hurt and my tummy hurt. My throat feels tight. Things that make me happy like riding don’t make me happy any more if I think about them when I’m at school.

My school cardigan is too thick but if I take it off its too cold. Tights are too itchy and they feel like they’re squeezing me and have pins in them. Seamless socks are better than normal ones but I don’t like them too loose so they have to be pulled up tight. I never want to wear normal socks again. My PE hoodie feels like I can’t move and I’m surrounded by everything.

I like breakfast club because there are lots of games but the teachers are always running around and they never listen to anything you say. I’m in the classroom before everyone else but then the others come running in being noisy and shouting. I would rather go in the classroom after everyone else when they’re calm and sitting in their places.

I don’t like it when other kids tell me to keep secrets.

There are too many people in the classroom, it’s busy and when people move around to get pencils they bash you. People get too close and poke each other and make too much noise. There is too much talking. I’m always getting watched by the teachers because I’m at the front. I want to sit at the back by the door because less people are crowding you and it’s better in the corner because people pay less attention to you and they’re not always staring. People are tapping each other with rulers or passing things under the table.

The cushion on my chair helps but the chair is really hard and small and uncomfortable. It hurts my back. It’s hard to sit straight with my feet on the floor and hands on the table like they want us to. It’s more comfortable to have a leg raised and bent but I get told off for not sitting properly. I have the cushion so I don’t wriggle so much. It helps a bit but it’s still uncomfortable on the chair. It would be easier to listen if I could move around more or get up, and then sit down to do my work.

Art is OK because it’s not loads of talking and sitting still, you can draw something and get on with it. I don’t like it when we have to sit down for so long. Writing hurts my hand but if I try to get it done quickly just so I can stop then I don’t get it done properly. Art / drawing is better because I can stop drawing for a minute and take little breaks.

They talk so loud and the teachers pick on you even if you don’t put your hand up. Then everyone stares at you. I don’t feel safe in the classroom with everyone. I used to go to the toilets and sit behind the mats because there’s no one there and no one can see you or stare at you. I still want to but I don’t any more because I would get pulled back out by my wrists and it hurts. I don’t know where to go now so I just sit and don’t do my work because it’s too noisy and don’t talk to anyone.  

Lunch is in the hall with the whole school on 4 tables, everyone is too squished together. I try going in the library to eat but I’m only allowed to when *** is there. Other times I get told off and I have to go back into the hall. I hate going outside at break. Everyone is there, there is no space and everyone runs in to you. I don’t like people pulling me or touching me. All the hidden and quieter places are too muddy and we’re not allowed there at the moment. I stand by the door. When the teachers try and make me play on the scooters or something I do it for a bit because I have to but I go back to the door as soon as I can.

I like the reading corner because there are lots of cushions and a rug. It’s away from everything else.

In assembly we have to sit with our legs crossed, I don’t like to sit still and it hurts. We have to sit in a line together. I want to sit on the empty bench no one is using but I’ve been told no just go and sit down. We have assembly every day and it’s one of the worst parts of the day. There are too many people in the hall and everyone is squished together, I want to push people away from me to make them go away.

In PE everyone is running around and I don’t want them to bang in to me. People don’t care where you are they’re just running around all over the place. Football is OK as long as we’re not playing matches, dribbling round cones is OK. I don’t like running, I always feel like I’m going to fall over. I don’t like throwing balls in hoops in case they fall on my head. I can’t run and catch at the same time. People throw the ball too hard.

I have 2 friends at school who I like having, but it doesn’t really help because they can’t stop any of the stuff that happens like being picked on in class or the noise. I don’t think I will have any friends next year when they go to secondary school. I don’t really like anyone else.

I would like to be able to work on my own when it’s quiet, where I get short bits of information so I don’t need to start wriggling, and I can stand up. I like *** because if you don’t understand something she doesn’t get cross or give up and walk off, she explains it in a different way. She never gets angry and she has a nice voice and we’re allowed to move around a bit.

I want to go to secondary school because then primary school will be finished and I’m closer to being able to leave school. I want to go to the smallest school where there are hardly any people, or go to a big school so there are more places to hide except then I’d get in trouble for hiding so actually maybe not.”

Pregnancy and birth – Matthew

John was at work on a Saturday morning when I got my positive pregnancy test with Matthew. I looked at that line and felt so happy. My final pregnancy and one to savour as much as possible. I let myself have a morning of feeling thankful that I’ve always manged to get pregnant quickly, and excited at what was to come, and then tried as far as possible to forget that I was pregnant until I’d had the scan and seen a heartbeat. After the two miscarriages between having the girls I was very aware that a positive test didn’t mean a baby.

This time there was no pale tinge on the toilet paper, no spotting, and no bleeding. There was no reason for me to have an early scan but we did pay for a private one at 8 weeks because the wait for the 12 week scan just felt so long. I figured if there was no heart beat I’d rather know (still based on the assumption / hope that my miscarriages had happened because the heart had never started beating), and if there was a heart beat it might give peace of mind. It was there, pumping away at the 8 week scan and then again at the 12 week scan, at which point I started to relax a bit.

Katie was an absolute sweetheart when we told her she was going to have another brother or sister. She was just turning 4 so whereas the news was a bit lost on Alice in the beginning (she wasn’t quite 2) Katie understood and seemed genuinely excited – in comparison with now when Alice and Matthew ask me if they can have a little brother or sister and Katie looks at me in total horror! I showed her the scan picture of the baby in my tummy and she wanted to keep it in bed with her and give it a hug. It didn’t really mean anything to Alice until my tummy started growing, and then she absolutely loved my bump. She was always hugging it and calling it ‘boy baby’. She loved my bump so much I wondered what she’d make of it when it disappeared and turned into an actual baby, but when Matthew was born she loved him just as much as she had the bump.

This time we decided that we would find out the sex at the 20 week scan. To be fair, even if we hadn’t asked to find out we would have known. A little penis was right there clear as day, sticking up like a rocket about to take off! We told our family and friends we were having a boy, and Katie was really pleased as she’d been saying she wanted a little brother.

So many people made comments that we must be pleased to be having a boy, and that John especially must be excited to have a son. A lot of people also joked that we could stop having babies now we were having a boy. There seemed to be this assumption that if we already had a boy we wouldn’t have had a third child, and it really bothered me. I would hate Alice to think that if she had been a boy not a girl our family would have been complete sooner, like she’s not good enough for being a second girl. Baby number three was purely a case of wanting baby number three, not wanting a boy. I never really had any strong feelings about what gender I was hoping for with any of my pregnancies, I just wanted a baby. With Katie I was convinced I was having a boy so maybe subconsciously that’s what I wanted. With Alice I genuinely didn’t care at all what the sex was. With Matthew, if anything having already had two girls I would have chosen to have another girl. But it was just nice to find out, regardless of whether he’d been a boy or a girl.

John really liked the name Frank for a boy but I was a firm no on that one (sorry any Franks out there!) But while I was pregnant my bump became known as Frank. We never had nicknames for the girls when they were bumps, and I quite liked having a Frank!

I was under consultant care again through my pregnancy. As I’d already had two C-sections the doctor told me that there wasn’t a choice this time and it was hospital policy to advise against trying for a natural birth, so it would be a third C-section. That was absolutely fine with me – better the devil you know. I also had regular growth scans because I had gestational diabetes this time round. They advised me not to eat too many carbohydrates, and that kept my blood sugars under control so I didn’t need insulin or anything like that. Matthew was consistently measuring big in all my scans and the doctors commented a couple of times that it was a good thing I was having a C-section. As with Alice, I was booked in at 39 weeks. When Matthew was born he weighed in at 9lbs 2ozs – so big enough especially as he was a week early, but not the giant I’d been expecting.

He was so active in my tummy. I could constantly feel him kicking and wriggling and rolling around. It felt like he never stopped. When they put the monitor on me the morning I went in to have him they said the same. They kept having to move the monitor as he was wriggling around so much they kept losing his heart beat and had to start again.

As with Alice, I loved my elective C-section. We were first on the list again so we had our baby in the morning and got to spend the rest of the day giving him hugs, staring at him, and having visitors. He looked so like Alice when he was born!

The first thing he did was to pee all over himself. It took a little while to get to hold him because although he did cry straight away it sounded very gurgly and a bit ‘wet’ so they called a paediatrician into the operating theatre to check him over. It took about 30 mins but he was given the all clear and I’d been stitched back up in the meantime so then we got to say our hellos to our little boy.

Katie was at school and Alice was at preschool when Matthew was born. My mum had stayed over the night before and got the girls sorted in the morning while we went to the hospital. Alice was due to finish preschool at lunch time anyway, and Katie got the afternoon off school and they came to visit us and meet Matthew which was lovely.

I was totally different this time about having to stay in hospital. After having Alice I’d been so desperate to get home. This time round I made sure to just enjoy some peace and quiet with our new baby. I only stayed in for two days / nights – Matthew was born on a Wednesday and we were discharged on the Friday. It was really nice just to chill out with him, hug him, feed him, look at him, do not a lot. He was born on 30th November so I took a load of Christmas cards to hospital with me and got them all written out while I was there. I’ve never been so organised!

John had 3 weeks off work again after Matthew was born so he did all the school and preschool runs until the end of term while I stayed home with the baby, and then it was the Christmas holidays so by the time the girls went back to school / preschool in January I was up and running again. It was nice to be broken into life with three small people quite gently, although it did make me laugh with the difference between your first baby and your third. After a C-section the advice is not to drive or do much for the first 6 weeks and I totally took that on board when I had Katie. I stayed at home and people came to visit but I didn’t drive or go anywhere until my time was up. When Matthew was born the girls had their Christmas nativities coming up so 5 days after having him I was off to see Alice the singing snowman in her preschool performance, and the next day to see Katie the singing sheep in her school performance!

It’s weird writing about becoming a family of 5. In a way it feels like two seconds ago but also such a long time ago since we had such small children. I look back at the pictures of when Matthew was born and think we were crazy. We had a newborn, a 2 year old and a 4 year old and it was hectic! I can’t imagine going back to that level of chaos as even though they’re still young (5,7,9) it just feels a lifetime ago now.

Thinking ahead

So….secondary school is a topic that’s on my mind a lot at the moment. Katie will be starting secondary school in September 2023 so there’s still a fair bit of time to go, but we will need to apply to whichever school she ends up going to in October this year. That still gives us 10 months so all fine in theory. Except the thought of Katie being at secondary school scares the pants off me because I have no idea where we’re going to send her or how she’s going to manage it.

Moving to her current primary school was definitely a good move because her mental health is much better than it was this time last year when she was struggling more and more with school and it was getting too much for her. She is much better supported at her current school and it’s tiny (just under 50 students) so by default the noise and crowding that she finds so difficult to deal with has been massively reduced. If we had a secondary school that could replicate the environment of where she is now I wouldn’t be worrying so much, but we don’t.

Even with the accommodations her current school have put in place and the fact that it’s such a small school, Katie still doesn’t like it. She still has the same issues. It’s too noisy, people get too close to her and bump her, (she feels) people are mean, school scares her. It’s just that they are on a lesser scale and she can manage them more effectively. Instead of daily meltdowns she has one maybe every couple of weeks. She will say she feels poorly and doesn’t want to go to school, but she doesn’t curl up in the foetal position and refuse to move. She still gets less sleep than I would think it appropriate for a 9 year old but she is asleep by 10.30 / 11 most nights instead of being up until who knows when.

Katie says she is looking forward to secondary school because it will mean she’s one step closer to being old enough to leave school altogether. She wants to go to a big secondary because she thinks there will be more places for her to hide. So that’s it – in the 5 and a bit years of schooling she’s completed so far, she’s learned that she can’t wait to be done with it and the more she can be invisible the better.

I went to an open event at one of the secondaries near us, which is a relatively small school as far as secondaries go. There was no one from the SEN team available to talk to. The office for pastoral care was shut and the student showing me around couldn’t tell me anything about it as it’s not something she needed access to. I waited 30 mins to speak to the headteacher and then gave up. And I freaked out because of the stairs. I hadn’t even thought about the fact that primary schools don’t have stairs and secondaries do. Katie isn’t great with stairs. Going up is fine, going down is slow. All it’s going to take is for one kid to race by her on the stairs and knock her and she’s going to flip out.

Primary school for the most part is one classroom with one teacher. The environment doesn’t massively change during the day, but Katie has still found it really tough to deal with. All of a sudden at secondary school she’s going to find herself with a different teacher for every subject, she’s going to be expected to move around the school and go to a different classroom for every lesson. I just can’t see her managing it, it’s going to be a sensory onslaught. I’m sure she will get one or two teachers who are amazing and she will be comfortable in their classes. I’m also sure she’ll get a couple who roll their eyes because ‘all kids come with a label these days’ and ignore any requests for support, and a couple who insist she doesn’t need any support because she will sit quietly in the classroom with her head down and won’t be any bother.

We’ve also found even at primary school that messages aren’t always communicated across staff. There might be one or two teachers who totally get that if Katie is looking at the board because that’s what the kids are supposed to do to show that they’re listening, that actually she won’t be taking much in at all and she listens a lot better if she’s looking down or has her head in her hands. But then she’ll get a substitute teacher or one of the teaching assistants will take the class and they’ll have a go at her for not looking at the board because they haven’t been told any different. I can only see this being more challenging at secondary school with so many more staff involved.

I would really like to get an education health care plan (EHCP) in place for Katie to help with secondary school. It would mean any accommodations she has are legally binding (at the moment we just have to ask and hope school listens but ultimately we’re dependent on their goodwill) and it also opens up the door to possible alternative provisions. There are two schools in our area that have specialist autism units, but at the moment Katie wouldn’t even be considered for them because only students with an EHCP can apply.

I spoke to Katie’s current school about applying for an EHCP and they said they wouldn’t be able to support it because she doesn’t take enough of their time or resource, but they recommended I put in a parental request. I also spoke to the autism advisors at our local council and they totally agreed with me about the challenges Katie is likely to face at secondary school and also suggested I put in a parental request.

Both school and the council seem to feel that ours is an unusual situation in that I’m requesting an EHC assessment with a view to getting Katie provision for the future rather than because she’s in desperate need of one now. They told me that although it’s worth trying to get an assessment now it’s likely to be refused and we’ll have to wait until she is in year 7 and prove that she’s not coping before anything would be done. The problem for me is that having seen the state Katie was in at the end of year 4 at her old school, I wouldn’t let things get that far again and I would pull her out of school rather than watch her suffer so much. I don’t want to wait until she’s back at crisis point to start asking for an EHC assessment which then takes weeks or months to process. I want something in place before secondary school to avoid getting into that mess in the first place.

Also, doesn’t the fact that she wasn’t coping in a 420 pupil mainstream primary school prove the fact that she’s very unlikely to cope in a 800+ pupil (as most of them are in our area) mainstream secondary school without additional support? I feel like if we’d have left her at her old school where she was literally falling apart, maybe we would be in a better position to apply for an EHC assessment. Whereas because we did what we could to help her and moved her to a smaller and more suitable school where she’s coping better, we’re being told she’ll manage fine.

I put in the parental request for an EHC assessment just after Christmas. This week I got the letter back saying an “EHC assessment is not necessary at this time” and that “Katie is achieving well academically and making progress. Therefore the EHC Panel is confident that an EHC assessment is not required at the present time”. I’m not surprised but it’s a bit soul destroying. It seems that academic achievement is put above mental health and emotional wellbeing. I spent ages putting the request together, knowing that we always hear that she does well academically so there’s no problem, and knowing it was likely to be refused, and lo and behold it was. The next step is to appeal the decision. I don’t know if I’ve got the emotional energy to appeal it and carry on banging my head against a brick wall, but I also know I’m going to do it anyway because how can I not? I can’t really consider myself any sort of parent if I don’t do everything I can to try and make school better for Katie.

It makes me feel very uncomfortable. I know that we see a different side to Katie at home than anyone else sees. I know I’m probably viewed by anyone in education as a problem parent because I’m always pointing out issues that they don’t see. I don’t know how to convince them that I’m not just being a drama queen and making stuff up. Katie has an autism diagnosis. She is under CAMHS for anxiety and depression (I must do a follow up on my CAMHS post!). She was referred to the Emotional Health Academy for anxiety. It’s on her medical records that she has been through a period of self harm. She has had therapy sessions with a clinical psychologist which she refused to engage with. We’re constantly told she’s fine, but that’s not my definition of fine. The times that she’s been fine have been during the lockdowns when she wasn’t in a school environment, but no school isn’t an option.

I very much hope that the LA are right and that Katie doesn’t need an assessment or an EHCP. I hope that when she starts secondary school I’m eating my words and writing about how happy I am at how well she’s settled in and how it’s suiting her so much more than primary school. There is no part of me right now that believes that will be the case.

To three or not to three

Once I’d started taking the happy pills (sertraline) just after Alice turned 1 the effect was pretty instant so in the end I only needed to take them for 6 months and I was back on an even keel. It didn’t take long for a thought to start nagging in the back of  my head, in spite of the horrible period of post natal depression I’d just been through….we should have another baby.

Before we had kids I’d always liked the idea of having four – I think probably just because I’m one of four and I liked growing up with my brother and two sisters. John always said he just wanted two, again I guess probably because that’s how he grew up (he has a younger brother). We’d both agreed that we wanted children but we’d never really talked about how many we’d actually end up having.

So after we’d had Alice, John was more than happy to leave things there. We had our two little girls with a 2 year age gap. Our house was big enough that the girls had their own bedrooms and we still had a spare room. We could afford for me to not be working while they were little. Their car seats and the double buggy fitted just nicely in my car without having to upsize to a big family vehicle. After a rough and emotional 18 months it was time to enjoy life as a family of 4 with our two healthy children. Well that was the logical argument that John put forward anyway, which made total sense.

Then there was my totally led by my biological clock, emotional, not at all very rational argument and quite honestly I have no idea how I convinced John to have a third baby because the only case I could put forward was ‘I just really feel like we need another child.’ I couldn’t even offer anything coherent about why I felt that way. It wasn’t that I didn’t love the girls. It wasn’t that I was desperate to try for a boy. I just really really felt we were meant to have another baby.

John was worried about what would happen if I got post natal depression again. That period hadn’t just been rough on me, it had been really difficult for him too – it was possibly harder for him because for that time I wasn’t at all myself and he was helpless to do anything about it. It wasn’t just a worry for him – I didn’t want to go through that again either, especially so soon after getting better. But that’s how much I wanted baby 3, I was willing to risk PND again. I hoped it wouldn’t matter and that I would be fine this time, but I also felt that having gone through it once I would be more aware of what was happening if it reared its head again. I promised John I would re-join any support groups and get straight back on the pills again at the first hint of anything being wrong. I definitely would not wait a year to take any medication like I had before. I wouldn’t put us all through that again.

We both wondered if we were pushing our luck. Katie’s birth had ended in an emergency C-section and a stay in the special care baby unit, and my pregnancy with Alice hadn’t been completely straightforward with the concerns about Downs Syndrome and her growth. We felt very lucky that both the girls were fine. Did we really want to risk another pregnancy or were we just being greedy? There’s no way to know unless you take the plunge, and that’s what we ended up doing.

John also asked how did he know that if we had a third I wouldn’t do the same thing again and start pestering him for a fourth? I just knew I wouldn’t! (Again, a very logical and well thought out answer, I know). It was impossible to explain this totally illogical need for a third baby but I was pretty convinced three would be my limit and I wouldn’t want another one after that. I also promised John that even if I did end up thinking a fourth would be nice, I wouldn’t ask him or push him for it. He was already massively pushing himself out of his comfort zone considering baby 3 and it wouldn’t be fair to ask him again.

At this point Alice was 18 months old so was moving out of the baby phase and onto being a toddler. Both of us readily admitted we preferred life when the girls were one and onwards. The newborn part is so hard and so tiring! John was onboard with the idea of having another child but not crazy about the fact we’d have to go back to that newborn slog. I could see his point but at least the newborn phase doesn’t last forever! Also I breastfed the girls and presumably would breastfeed any future baby so the lion’s share of that was on me in terms of sleepless nights and feeding, and I was willing to do it.

So, somehow I managed to talk John round and he agreed we could have baby 3. Thankfully he didn’t get the time to change his mind, as 2 months later I was pregnant and at the end of the year along came Matthew. And it turned out that yes baby 3 did make our family complete, and not once have I ever wanted baby 4!

Tis the season

We had a 3 day Christmas this year – I love Christmas for seeing family and spending time together but I’ve read a lot about how difficult and overwhelming it can be for neurodiverse people (not just autistics). This year we spent Christmas Day with my mum and step dad, stayed the night at their house and then saw my sister and her family on Boxing Day, and yesterday we had my in laws over to us. Thankfully Katie has never seemed to find Christmas too stressful. She looks forward to it and seems excited by it, and she’s tended to get stuck in with it all. This year is the first year there have been any signs of stress on her part (although I wonder if that’s just because we weren’t looking for them before) but they were fairly minimal.

I’m pretty sure Katie’s favourite part of Christmas Day was in the evening when Alice and Matthew had gone to bed, and she stayed up and played the board game ‘Sorry’ with my mum, step dad and my mum’s friend who was also staying with them. She definitely seems more comfortable in adult company than with other children and doesn’t get irritated with them in the same way. I really enjoyed just watching her playing – there was genuine enjoyment there on her part, confidence in handling herself, and a fair bit of banter going on where she was giving as good as she got. She’s also not massively competitive, so she’ll try to win but it won’t cause a meltdown if she doesn’t. She just had a good laugh and it was great to see her relaxed and happy.

At bedtime at my mum’s Katie started off in her own room (with John staying in with her until she was asleep) but only for a couple of hours, at which point she came into our room because she was scared of something being in the wardrobe. We’ve pretty much given up trying to reason with Katie when she’s worrying in the middle of the night because it never gets anywhere other than everyone getting stressed and no one getting any sleep, so she just came into bed with me and John went and slept in the other room.

Boxing Day was no problem because my sister also has three kids (also two girls and a boy), and they tend to all pair off together – the two older girls, the two younger girls, and the two boys. Luckily they all get on well because we see a lot of them and they’d end up getting lumped together anyway whether they liked it or not! Alice and my niece Charlotte only have 4 months in age between them and had a bit of a love / hate relationship to start off with which has grown into love as they’ve got older. Matthew is 2 years older than Brandon so it’s fairly recent that Brandon has been old enough to play and chat with him but they rub along together pretty happily. But Katie and Cara (9 months in age between them) have loved each other and been in each other’s pockets since they first met, which was pretty infrequent for their first couple of years as my sister lived in America. They tend to hole themselves up together and ignore the rest of us, so Boxing Day was fine and probably a pretty easy day for Katie as that’s exactly what they did.

Yesterday was possibly the day Katie started feeling the stress a bit where it came straight on the back of two other full on days. We had John’s parents, brother and wife, and nephew to us for the day. Katie managed things pretty well and I was pleasantly surprised when she came and ate at the table with us because she’d told me that she wasn’t going to (which would have been fine). She ate her roast dinner but then suddenly disappeared upstairs and didn’t want to come down for pudding. I’m not aware of anything ‘setting her off’ as such so I think it was just getting a bit much being at the table with all of us. We had to move the table round to fit everyone in and it was a bit of a squash. After a while she came back downstairs and had pudding on her own in the conservatory.

Before we opened presents Katie went and put on a Halloween mask which covered her face except for eye holes. This isn’t something she’s done before but she told me she didn’t want to open presents without wearing the mask. I’m not sure what was different than any of the other times she’s opened presents. I guess she felt a bit exposed for some reason and just needed something to hide behind, so it will be interesting to see if she uses that again. She just kept it on for opening presents and maybe half an hour or so afterwards and that was it.

Overall a fun few days which whizzed by, but it’s easy to forget that Christmas can be full on for any children regardless of their neurotype. Matthew spent Christmas morning alternating between being totally hyperactive and announcing it was the best day ever, to bursting into tears about the smallest thing, to settling down slightly in the afternoon and being just hyperactive but not emotional! Alice was fine over Christmas but today we’ve had a quiet day and it’s just been the 5 of us at home. We went out for a walk and the kids have had a chance to just do whatever while we’ve tried to get the house straight, and she’s been really grumpy so I guess she’s on a bit of a come down after a few crazy exciting days!

We’ll mostly just be pottering around now until 5th January when the kids go back to school and I go back to work. Katie has already started worrying about going back and saying that she doesn’t want to so I’m not sure how that’s going to go when the time comes.

Post natal depression

Literally everyone told us that having the first baby was the difficult part because your life completely changes. By the time you have the second one you’re already parents, you already know what it’s like. You’re used to sleepless nights, you know about feeding, you’ve been through teething, exploding nappies and baby sick. I had rubbish days with Katie when she was a baby the same as all parents do, but mostly I was just so wrapped up in her and enjoyed having her so much I thought if the second time was easier than the first it would be a total walk in the park. I was not in the tiniest bit prepared to experience post natal depression after baby number two. It didn’t cross my mind at any point that it could be something I’d have to deal with.

I’m not really sure when it started, but I suppose more or less straight away. I was only in hospital for three days after having Alice, and the first day was amazing. Her birth was brilliant, and I loved having the day just to hold her and look at her and show her off to our parents and to Katie when they came to visit in the afternoon and evening. But from the second day I started feeling anxious. I was so desperate to get back to Katie. When Alice and I ended up being kept in hospital for a third night because of Alice’s blood sugars I just cried – I knew Alice would be OK so it wasn’t from worry about her, it was because I was missing Katie so much and I just so badly wanted to be back home with her.

John was entitled to two weeks paternity leave plus took an extra week as annual leave, so we had three weeks of settling down as a family of 4. Friends and family came to visit, it was summer so we spent loads of time out in the garden, my sister had just moved back to England from America with my brother in law and 2 year old niece and was expecting baby number 2 (also a girl) a few months after I had Alice. We were finally going to be able to see each other all the time and bring up our girls together. On paper that was a perfect summer and we have loads of photos of Katie and her cousin playing together, everyone smiling, happy times. But 7 and a half years later I still find it difficult to look at those photos without feeling the knot in my stomach and the constant feeling of dread I experienced for months on end. I was already panicking about John going back to work and wondering how on earth I was going to survive on my own with a baby and a toddler. This was not the same totally normal nerves I’d had about John going back to work after we had Katie. It felt overwhelming and impossible. I wasn’t nervous I was terrified.

Alice was not a happy baby. She cried. All the time. Katie used to sleep in the car, Alice screamed. When Katie was a baby we had driven down to Cornwall for a wedding, no problem. When Alice was a baby my uncle got married, again in Cornwall. We didn’t go because we just couldn’t face the thought of the car journey with Alice screaming all the way there. Katie would happily go for a walk in the buggy, Alice would squirm and cry. Katie would lie on a play mat and have a good kick around, Alice would cry the second she was put down. Alice was the baby that everyone would look at and say “Oh dear, she’s not happy is she?” I hated that comment along with the follow up ones – “maybe she needs a nappy change. She’s probably hungry. I expect she’s tired.” Yes people, I have noticed that she’s not happy and believe it or not she’s been fed, burped, changed and all the rest of it. The question that I dreaded the most was the direct “what’s wrong with her?” I didn’t know. I couldn’t stop it. I felt like a total failure.

I felt trapped. I was too scared to go anywhere because I knew every trip would involve Alice crying. We’d bought a double buggy for the girls but I ended up hardly using it at all because it just meant pushing a crying Alice round and half the time Katie would get fed up of hearing the baby screaming and she would join in too. I only remember actually venturing out twice in public in the first few months. Once was with a friend who didn’t drive so I parked at her house and we walked into town with Katie, Alice and her little boy. I had the double buggy but within 5 minutes Alice was crying so I took her out and ended holding her over my shoulder with one hand and attempting to push the buggy with the other hand. The other time someone I’d worked with suggested meeting in town and I didn’t want to admit that the thought of it terrified me so I agreed. We had a nice enough time but all I remember from it is such relief that I was with another person and had another pair of hands, as she ended up pushing Katie in the buggy while I walked along holding Alice again as (surprise) she’d started crying within two seconds. And feeling like such an idiot that I wouldn’t have been able to manage that trip on my own. It made me feel terrible that things I’d taken for granted now felt like huge obstacles that created stress and panic and just weren’t enjoyable anymore. I couldn’t imagine taking Alice and sitting in a café like I had with Katie when she was a baby. But on the flip side days at home with no plans also filled me with dread. It was too hard to have hours and hours stretching ahead feeling that I was failing both the girls – Alice because I couldn’t stop her crying, and Katie because it was suddenly so hard to do anything with her when I had Alice permanently attached to me. The NCT friends I’d made when we had Katie, plus family, were absolute lifelines during that time, especially NCT friends. I spent most days at one of their houses or having them to ours, so that Katie had some toddler friends to play with and I had some adult company who didn’t judge me for my screamy baby.

I did go to the doctor about Alice’s constant crying and didn’t get very far. We tried giving Infacol but it didn’t seem to do much. Given that she seemed most comfortable upright over my shoulder I tried putting her in a sling but she was too squirmy and it was too uncomfortable. I was breastfeeding and having her that close to me just seemed to trigger my boobs to pour, so even with pads in we’d both end up covered in milk and sweat and it was just horrible. So over my shoulder she stayed until she was big enough to go in the jumperoo, and that was a real saving grace. We’d finally found a place she seemed happier!

I didn’t feel the same about Alice as I had / did about Katie. It nagged away at me constantly that I was the world’s worst mother for not loving my children in the same way, but it was so much harder to bond with Alice. Some days I just wanted to get away from her. People would kindly offer to take Katie out for the day or for a few hours, but really I just wanted things to go back to how they had been. I wanted to spend time with Katie and have Alice taken off my hands for a while. But I couldn’t because I was breastfeeding (and Alice struggled to take a bottle) so she had to stay with me.

She was the second baby that we’d planned for, who had been very wanted, who had been preceded by two miscarriages, and the very last thing I ever expected to feel towards her was resentment, but I did. I hated myself for it. It had been so easy and so enjoyable to fall in love with Katie. What was wrong with me that it wasn’t the same with Alice? I could only bond well with my easy happy baby, but give me one that cried and squirmed and it was all too much and I couldn’t deal with it? What did that say about me as a person and as a mother? I loved her absolutely, but it came with panic, with anger, with resentment and with self loathing and self doubt. I lived for her naps when I could give Katie my undivided attention and just take a bit of a breather, and when that cry came to tell me she was awake again my heart would pound and a burst of adrenaline would go through me along with a shot of anxiety. With Katie I’d go and get her up from her nap with a big smile and be chatting to her straight way. With Alice sometimes I would do that, and some days it was easy to that. But there were plenty of days when I would pick her up silently and be struggling against tears.

I felt guilt for Katie. We thought we were doing the right thing giving her a brother or sister, but actually it felt like we’d just turned her life upside down in a negative way. She had been used to days with Mummy, going to baby groups, having all my attention, able to play, bake, cuddle, have stories, whatever. All she had to do was ask and we’d do it together. Now she had a stressed and much snappier mummy telling her not now, wait a minute, please be quiet while I try and get Alice to sleep, and the never ending crying.

I felt guilt for John who now had a stressed and controlling wife begging him not to go out with his friends, phoning him if he was a minute late home from work, not on top of anything. I really didn’t want to be that person who thrust the baby at him the minute he walked through the door and didn’t ask him about his day, but I was. I couldn’t help it. I literally counted down the seconds until he got home and I didn’t have to battle through the rest of the day on my own.

In the beginning I fobbed all this off as just having a new baby and that things would get better. There were some good days in there where I felt a bit more optimistic that I could manage and convinced myself that I was fine, but they never lasted. The emotional ups and downs were exhausting in themselves, rocketing between I’m fine and I’ll get there, to this isn’t right and I need help, backwards and forwards all the time. I did speak to my health visitor about it and she put me through to an organisation who were running a group for other mums in a similar position. It was a nice group and it was helpful to know that I wasn’t the only one struggling, but it didn’t help in terms of actually sorting myself out and getting better.

I don’t know why I had postnatal depression with Alice and not with the other two. When I spoke to the GP he said there was likely a hormonal / physical side to it as well as emotional / mental. In the space of 3 years I’d got pregnant, had Katie, breastfed for 11 months, got pregnant as soon as I stopped breastfeeding, had two miscarriages close together and then got pregnant and had another baby straight after. My hormones were probably going a bit crazy. Having Alice had also put Katie out of whack slightly and she went from sleeping really well to dropping her nap when she wasn’t ready to and waking up at 5 most days so I was up half the night feeding the baby and then up at the crack of dawn with the toddler. John was amazing with that and would get up with Katie while I tried to catch up on sleep until he went to work, but still…sleep deprivation is a bitch! And then when Alice was 7 months old I got glandular fever which just made everything so much harder. I wouldn’t recommend glandular fever anyway but definitely not with a 2 year old and a baby. Some days I would manage to do stuff with them. Other days I would put Katie in front of the TV or tablet, stick Alice in the jumperoo, and couldn’t get up off the sofa.

I had resisted and resisted the idea of medication. I don’t know why. It’s not like I think worse of anyone else who is on the ‘happy pills’ and I know if a friend had been in the same situation as me I would have been telling them to speak to the GP and get some medication – which is what the people I confided in were telling me to do. I was scared that instead of making me feel better they would make me feel numb, and I kept telling myself I could pull myself together but I couldn’t. I was so tired of feeling such a failure, feeling so far removed from my old self, feeling out of control and scared. I was often living day to day, hour to hour, just managing or coping rather than enjoying. I so rarely just enjoyed the moment I was in – I was always willing the time away and counting down to the next day John would have off work. I felt that John and the girls would be better off without me as I was just ruining everything for them. The only thing that stopped me from leaving them was the fact that I was too selfish and I didn’t want to be without them. So finally, just after Alice’s first birthday, I went to the GP and he prescribed sertraline. It was literally the best thing I ever did. Within just a couple of days I started feeling better. I took it for 6 months and it just kicked everything back into gear and put me back on an even keel, and then I weaned myself off it and haven’t needed it again. I wish I had done it sooner and saved myself and John and the girls a whole load of heartache.

Alice is 7 now and I love her to the moon and back and any other expression you can think of. Whatever issues were there in the beginning are long gone in terms of our relationship, but that first year has left its mark on me. I mentioned earlier that I still feel panic when I look at photos of the summer of 2014. I try not to think about it. You hear so much about the first months of a baby’s life being key to their long term emotional security and attachment and I so desperately hope I haven’t messed things up for Alice. I wasn’t the mum she deserved, definitely for the first 6 months, and realistically probably for the first year. Hopefully I made up for that in the following 6 years and can keep making up for it in the future. Katie and Alice also don’t have the best of relationships, mainly due to Katie’s attitude towards Alice. I don’t know how much she understood at the age of 2 and I tried to keep everything as normal for her as I could, but realistically it’s a big enough change for a toddler when a younger sibling is born never mind when that younger sibling means mummy is different too. I wonder how much resentment I’ve caused Katie to have towards her younger sister.

I didn’t go on to experience PND again when I had Matthew and it seems to have been a one off relatively short lived period, which I’m so thankful for because it was horrendous while it lasted. I can’t change the fact that it happened but I do think it’s important to talk about experiences of PND so that people know they’re not alone and they can get help…just not too often as I’d rather forget about it most of the time!


A couple of years ago (ish) when it was first suggested that Katie might be autistic, I was told to book myself onto a parenting course (or courses) because if we got as far as CAMHS that would be their first recommendation so it would help if we’d already done it. I signed up to The Incredible Years. I’ve since heard really mixed feedback about this course, but luckily for me the one I did was run by an absolutely lovely lady called Lesley and I did find it really helpful. I mentioned to her that we were trying to get an autism assessment for Katie and she told me straight up that I’d need to take care of myself because the process was long and difficult and it wears parents down. She suggested I also sign up for her ‘Boost’ course which was designed to support parents with their self esteem.

I didn’t sign on for Boost at the time because we only just about finished the Incredible Years before covid hit and the first lockdown happened, but unfortunately I have found out what she meant about the process being hard work and wearing parents down – and that’s even with the fact that we went private and Katie’s diagnosis only took a few months.

I have doubted myself big time as a mum in the last few years. In the first instance it was because Katie was so clearly struggling and we had absolutely no idea why or what to do about it. Then when we got her diagnosis and I started learning about autism it was a big wake up call that although we’d been doing our best, our parenting up to that point had really not been suitable for her neurotype and was probably doing more harm than good. Big time guilt trip and more a less a U-turn in the way we approached things.

Pre and post diagnosis life has felt like a constant battle.

Hello GP, please can you refer us to CAMHS for an autism assessment? Yes, based on what you’ve told us there is enough evidence for a referral. Oh no wait, we can’t without school’s input.

Hello school, please can you refer us to CAMHS for an autism assessment? No we can’t. Katie is fine in school. Any behaviours you’re seeing must be an issue at home.

Hello autism advisors at the council, if we self refer to CAMHS will we get seen? Yes but they won’t take you seriously without school support and the waiting list for an assessment is at least 2 years.

Hello school, we had a private assessment done and they have diagnosed autism. Please can we have a conversation about how you can support Katie? Well we don’t know about that, if it didn’t come from CAMHS we don’t think you’re entitled to any support

Hello school, a private diagnosis is just as good as a CAMHS one – we checked with both CAMHS and the council before we went private and they both confirmed it. Please can we discuss how you can support Katie? No. She doesn’t need an EHCP and she’s fine in school

Hello school, please refer to her diagnosis report which highlights several times how extensively Katie masks at school but how she still needs support. Please can we discuss? Nope, not interested. She doesn’t need any support

Hello school, here’s the autism advisor for primary schools who agrees that Katie needs support and that the accommodations we’ve requested for her are totally reasonable. Please could you put some in place? Ok we’ll reluctantly agree to fiddle toys but tell her off for using them, and she can’t have access to a quiet space because there is nowhere suitable at school. We’ll say yes to some other stuff just to shut you up but we won’t implement any of it.

Hello school, Katie is self harming, please please please can you help her in school? Just us supporting her at home isn’t enough. School ignores my emails.

Hello Emotional Health Academy, my daughter is self harming, please can you help? Speak to CAMHS

Hello CAMHS, my daughter is self harming, please can you help? Speak to the Emotional Health Academy

Hello GP, my daughter is self harming, please can you help? Puts in an urgent referral to CAMHS, who reject it because apparently it’s an autistic issue not a mental health issue

Hello GP, the autism advisors suggested Katie should have an occupational therapy assessment, how can we arrange this? Well you can’t really because you either have to have an EHCP which you don’t, or you have to go through CAMHS who have already told you to get lost.

And so it goes on.

Then there’s the fact that Katie doesn’t really like people knowing that she’s autistic but that when we do tell people we often get:

“I’d never have believed Katie is autistic”

“She doesn’t look autistic”

“But she seems so normal”

“She must be really high functioning”

“All kids have a label these days”

I kind of get why people say these things. We live with Katie and we didn’t realise she was autistic until Amanda came and waved it right under our noses (here) Most people’s idea of autism (and ours before we knew better) is no eye contact, lining things up, and wanting to be left alone – which is true in some cases but Katie doesn’t fit those criteria. But people’s constant denial / surprise at her diagnosis is really wearing. It feels like I’m always having to prove that I’m not an overly anxious parent and there is a reason she has a diagnosis. It wasn’t just us throwing a load of money at a problem that didn’t exist so that we could get a label for our child.

Anyway, that’s a much longer than intended back story as to why I did sign up to Boost when covid restrictions eased up and the course was on offer again. As Lesley predicted I did feel worn down and I do feel that my parenting is constantly judged, and it’s not great for self esteem. So I currently go on a Thursday evening and we’re most of the way through the course with a couple of weeks left to go.

This week was my favourite one so far because it was on compliments! Each person in the group had to write a compliment about the others in the group. Then we had to write 10 things we liked about ourselves. It sounds a bit corny but actually it did achieve something and everyone left feeling better about themselves. So I thought I’d write mine down before I lose them.

Other people’s compliments to me:

  • It’s lovely to hear stories of your children. You are a wonderful mother
  • You are a friendly lady with a calming personality
  • Peaceful
  • Sam is caring and good at listening and offers information to extend topics and support others view points. Sam is always happy to look interested in what is being said and never interrupts anyone speaking. Sam is considerate to all members of the group
  • Sam: a beautiful lioness being the mighty protector of her children. Your voice (roar) gives them their voice…what a role model. You my lovely lady are so much stronger than you think you are…own it and work it!

The things I like about myself:

  1. I try my hardest to be there for others
  2. I will not give up when it comes to doing what is right for my kids
  3. I am good at my job
  4. I can take pleasure in the simple things in life
  5. I am conscientious
  6. I feel things deeply and love people enormously
  7. I like my smile
  8. I will see things through to the end
  9. I’m happy to be a crazy cat lady
  10. I’m proud of myself for losing 3.5 stones

And just by coincidence, Alice came home from school the other day and had done me a really sweet picture, unprompted and out of the blue. She drew a heart with ‘kind things about Mummy’ inside it. She’d written:

  • Mummy gives great hugs
  • Mummy is the best
  • When we are sad Mummy gives us a hug
  • Mummy is kind to me, Katie and Matthew
  • Mummy helps us if something is hard

Sometimes a Boost is all you need!

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.