For reference, I have a nearly 13 year old daughter and a nearly 10 year old son and I wrote this mostly before the Easter holidays. I recently tweeted about parenting with ME and asked for hot tips. I’m going to write a follow up post including some of those responses, so thanks to those who contributed! 

Before I begin, I wanted to acknowledge those who have ME and for whom having children is not a possibility. By writing about my parenting experiences, I hope not to exclude from my blog those who grieve the opportunity to have children despite this particular blog series having that current focus. 

Mornings

Yesterday was a tough morning for me and I had one parenting fail after another. I don’t always know how each day is going to pan out energy wise and sometimes I don’t realise if I’m having an ME crash until I’ve got up and put the kettle on. My kids are great, and have a good understanding of my illness, but it’s a lot for them to carry. With them going back to school and getting used to the change in routine, there’s a lot for all children to deal with right now. There’s fatigue for them too in managing the effects of dealing with busy classrooms again, navigating friendships after time apart and adjusting to new expectations around masks, testing and social distancing. So in our house we’ve had a couple of big morning meltdowns recently despite our best planning. That’s really normal and to be expected but it can have an adverse effect on our health as the PEM kicks in.

I think mornings before school are the most challenging time of the day for parents and children to manage. It’s our job as parents and carers to help regulate children’s emotions and provide a safe space for them to be able to deal with transitions and to vent emotionally, and this job starts the moment we get out of bed. Often children don’t have the ability to put into words what they’re feeling in their body about the day ahead so it comes out in anger or a stress response. As a professional I’ve spent thousands of hours sitting with foster carers on sofas and at kitchen tables, listening and supporting them in behaviour management and helping carers to provide a secure base and a positive environment for the children in their care. If application of head knowledge on parenting was so simple, social workers and psychologists would have the most well adjusted and emotionally intelligent kids in any community. I’m pretty sure that’s not always the case. Sometimes children push our buttons, we can form unhealthy response patterns, get stuck in ruts, or end up going around in circles. 

I’m sure most parents have some variation of these thoughts each morning before school… 

• Why can’t they just do the simple thing that I’ve been asking them to do for years?!
• Why don’t they listen to me?
• This is not the time for them to be getting stressed about something so inconsequential!
• We need to be doing this right now, not that.
• Why are they taking so long? I don’t have time/energy to drive them to school if we miss the bus! 

It’s how we process and act on these thoughts and frustrations as parents and carers, and how we respond to our own stress that is often pivotal in how that busy hour or two before school pans out. Are we supportive and encouraging in our interactions, do we recognise the things that feel big to them or do we increase their stress levels by letting our own bubbling emotional messiness rise to the surface?

For anyone in a parenting role, the ability to respond to our children varies depending on our own capacity to function effectively. My greatest challenge between 6.50am and 8.16am is how I navigate interactions with my kids. With ME, the ability to respond to our children’s needs is hugely impacted by how much energy is in the tank, whether we slept well, or at all, how thick the brain fog is, pain levels and on some days, whether we can actually get out of bed. Sometimes my brain fog will mean that I think I’ve asked child no.1 or child no.2 to do something and then when I see that they haven’t done it, I’m using a firmer voice. When actually, that’s the first request and they rightly feel that I’m being unkind when they didn’t know I wanted them to do something in the first place. As parents, it’s our responsibility to help set the emotional course of the day for our children, but we can easily mess up their trajectory because of our own exhaustion. It’s no one’s fault, but we do need to think and act intentionally to achieve the best outcomes. And in the bigger picture if we can get those morning interactions right and things go smoothly, then hopefully the impact of Post Exertional Malaise on ourselves will be reduced because we’re not stressed to a frazzle by 9am and we have less cortisol, the primary stress hormone, and adrenalin flooding our system and increasing our heart rate. 

Sometimes we need to find a way to step back, reflect on our own stress response behaviours and consider how we present ourselves to our children.

With ME, our condition fluctuates vastly at times and so does our ability to function. Exhaustion has a huge impact on our ability to think straight. One of the helpful things I remember from training by a child psychologist was the analogy of, as a foster carer, being an actor on the stage of your home. I think this can apply to parenting generally: the need to put on a hat and leave your own emotions backstage until you have the chance to provide self care and process them effectively. This isn’t about negating one’s emotions in an unhealthy way, but to recognise how important it is that we help our children by co-regulating their emotional journey. We’re the adults. When we respond to our children with warmth one day and bluntly or harshly the next with no changes from them, we risk leaving our kids open to forming anxious or avoidant attachment styles. This is heavy, tough stuff and we can carry a lot of guilt for not being the parents we so desperately want to be. Yet it’s so hard to feel in control at times when we don’t know up from down and we have wobbly legs! 

I’m writing this blog for myself to process some of these themes, as much as for anyone else. But I also want to reflect and realise that I’m mostly doing the best I can. You’re mostly doing the best you can. When I’m grumpy with my kids, I know that’s not me, it’s the exhaustion. How do I perform as an actor when I have my hands tied behind my back? 

Some days are just disasters and can’t be avoided. Some days just naturally go well and the sun is shining. I think some days, when I’m feeling rough but not too crashy, it is possible to find creative ways to navigate to a positive day ahead without too much added exertion. These are some of the things that help…

Planning: my kids have stepped up recently to making their own packed lunches the evening before. We’re being more intentional about getting them to check they have all the clothes they need for the next day as well. If they have everything they need in the morning then there’s less pressure to find socks 5 minutes before they leave the house in a messy frenzy. Of course planning also requires that we have already found the energy to actually wash their clothes or check they’ve done it when you give them more responsibility! 

Eye contact, physical touch and communication: we know what it’s like to feel like an ME zombie in the morning. Everything aches and the sunlight burns our eyes. The simplest option can be to go through the physical motions of completing tasks and just get through it until we can climb back into bed. Sometimes though we can forget to really engage meaningfully with our kids. A hug, pat on the back and eye contact don’t have to take much energy but can help our kids feel seen. 

Music: some mornings as parents with ME we just need as much quiet as possible just to deal with the two hundredth alcohol-free hangover in a row. But I’ve also learnt that, on the mornings I can deal with music, it can create a positive environment. I have a ‘joy rising’ Spotify playlist of happy, boppy songs which I play sometimes. My daughter might dance a bit between tasks and my son will likely insert the word ‘fart’ into lyrics. 

Humour: this can make a huge difference in the morning and can turn the emotional temperature in your favour. See fart songs above. It’s important to be mindful when it’s not the right time to instigate humour. As, like Monty Python’s deadliest joke, we need to be wary of weaponising humour in our interactions with kids. 

Silence: sometimes silence is good. Sometimes it’s needed. At risk of contradicting myself, natural, unforced silence can be beneficial at the right times. As a person with ME, I’ve fallen in love with silence. Moments of silence in the middle of a storm can be helpful for children and young people to centre their thoughts and all you can hear is the crunching of cereal. It’s about sensing what children need on any given morning and trying to find the balance when different children need different things. 

Warmth: Being physically cold will affect most people’s mood. Creating the right physical environment can really help children and ourselves start the day in a more positive mindset. 

Tag team: If you have a partner who parents, communication and recognising your strengths and weakness can be really important. Being clear about roles and boundaries helps kids to know who to go to at different times. 

Modelling: Its important that we are able to model healthy emotional restoration with our kids. When I can stop and reflect and realise that I’m being unduly harsh or snappy with my kids, I’ll look to apologise and explain that I’m struggling that morning. While it’s not always easy to calm our own minds, these moments of restoration can ease tension and model positive strategies to manage stress. 

Ultimately, parenting with ME is really tough. For me, lockdown and home learning was a time of experiencing huge guilt at leaving them to the laptops while I rested and my wife worked hard from home upstairs under new circumstances. While we can feel that our kids are being negatively impacted by our illness and them having reduced opportunities, it’s also important to remember that they are learning a huge amount through our illness. They’re learning empathy, compassion, emotional intelligence and a whole bunch of things that other kids in school won’t necessarily learn in the same way. Somehow gaining insight into suffering from a young age also brings maturity. It’s a burden we may not wish on them. But I think it often breeds resilience and that’s something all kids need in the uncertain times ahead. 

If things are so tough that you’re struggling, please seek support, whether that’s informally through needing to vent to a family member or friend, or practically with care tasks or behavioural advice. Social care may seem like an exhausting minefield to navigate, and often it is, but there is the potential for support through direct payments and signposting. If your child supports you, they may well be a young carer and there are organisations who do excellent person centred work locally with young carers.