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!

Boost

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.

After Death

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

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

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

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

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

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

New beginnings

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

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

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

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

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

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

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

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

A home away from home

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

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

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

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

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

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

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

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

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

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

Sleep

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

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

Until it’s not any more.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A camping experience

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

The good bits:

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

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

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

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

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

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

The not so good bits:

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

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

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