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.”