Just keep putting one foot in front of the other...

It's been a very long summer. A lovely summer, but one which has brought the usual push and pull of different needs in our neurodivergent household. Some of us need alone time. Some of us need to have things to do outside the house. Some of us just want to stay at home and engage in hobbies which are not shared by others in the family. It has been at times a rather exhausting combination.

The marathon of the summer holidays

We had our usual wall planner out this summer - showing the whole summer at once, it meant that we could keep track of what we were doing when, and even plan some rest days as well. It did help, but I still found myself getting impatient by the end to get my head space and alone time back, which would only happen when I was on my own at home again. It's funny how I am often not aware of my need for a particular thing until it is not possible.

In the middle of the holidays I held a one-off event for my church toddler group. Having only had a handful of people coming up until now, I wasn't sure if anyone was going to show up. I was delighted and overwhelmed by the huge response, which was lovely, but also presented me with challenges. I had my daughter with me who was overwhelmed by the number of people there and who desperately needed my support in that time. I spent the entire morning running between the room where everyone was, asking my volunteer friends to do various things to look after the families (most of whom had never been before, so I wanted to make them want to come back), and checking on my daughter. By the time we had packed up and got home, I was utterly exhausted.

What my exhaustion looks like

When I say I'm exhausted, I don't just mean feeling a bit tired. I mean, my brain won't work. I often lose the ability to form sentences either by talking or even in my head. My limbs feel heavy and I am unable to make decisions. I find cooking meals or doing other things at home almost impossible. I am unable to concentrate on anything, and often I am unable to focus even on things that I enjoy, like my favourite tv shows that I have watched countless times before. I am also unable to show interest in other people or to moderate how I speak or react to things. Unfortunately this can come across as me being mean, unkind, rude, grumpy, etc. I genuinely don't mean it, and it is not how I really feel about those people or things - I just don't have access to that part of my brain in that moment. I wish I could make people understand more.

I think that I understand my triggers a little better than I used to. As I still have (and always will have) the remnants of PTSD somewhere in my brain, I can still be affected by things unexpectedly, like continuous noise, especially at a particular frequency. But there are other things, like being in big, busy places, being in crowds, having too much background noise, or having to socialise / mask for long periods, that can trigger this exhausted response. I believe this is referred to as a shutdown.

Things that help me recover

Often I just want a nap, or to lie down on our bed in silence in a darkened room. This is like my brain pressing the reset button, and I usually feel better afterwards. Sometimes eating something with protein can help - as with many neurodivergent people, I have difficulty with interoception, so I don't often sense hunger signals or other internal prompts. Being under my weighted blanket can also make a big difference, and being left alone is usually the key. My amazing husband and daughter know not to ask me lots of questions or expect much from me once i start to feel this way, which is the best way they could care for me, and for which I am eternally grateful. I always recover if demands on my brain are reduced.

Life never stops

We are also been processing a number of changes in our lives - including our daughter starting secondary school, which has proved a big adjustment for me as well. Not only have I got to get used to the idea that I am the parent of a secondary aged child (how did it all go by so quickly?!), but also to the changes that come with no longer waiting for her in the school playground, chatting with other mums who have become my friends. My daughter is now expected to keep track of her own timetable, her own belongings, and organise herself in a way which up until now I have done a lot of helping behind the scenes. Due to her neurodivergence, I will continue to help her, and she will be getting some help at school, but the culture change is a bit of a shock as well. I am not yet fully adjusted to this, but I am hopeful that as time goes on it will feel more normal.

Once the toddler group has started back later this week, I will be able to relax a little more. I have made lots of plans for what we will do, and I am interested to see how it all goes. It is hard not to be too apprehensive about it though - last term we had a very mixed response in terms of numbers, and then we had so many in August. I have no idea what this term will bring, and I don't like not knowing what to expect.

And then, as this autumn term gallops towards the Christmas holidays, it will all ramp up a gear again as we have lots of family birthdays, school events, as well as the festive season to look forward to. I need to keep myself from looking too far ahead and panicking - or I need to plan ahead and do everything as early as I can to avoid stress later. I need to remind myself that I am not in a rush, and it's a marathon, not a sprint...