Lockdown 1

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

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

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

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

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

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

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

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

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

1 – Observing Katie within their clinic

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

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

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

Getting an assessment

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

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

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

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

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

Katie – it’s a boy standing in a field

Psychologist – anything else?

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

Psychologist – how do you think he might be feeling?

Katie – I don’t know

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

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

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

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

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

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

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

I’m sure it’s nothing, but….

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

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

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

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

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

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

And yet….

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

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

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

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

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

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

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

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

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

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

The Start!

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

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

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

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