Whew. We made it through the school holidays, well-done everyone. Are you feeling relief that your children are back at school? Perhaps you're feeling like you need a holiday from your holiday?
Or perhaps you're feeling anxious, exhausted and overwhelmed just thinking about the year ahead? Your child is refusing to go every day and when you finally do get to school they won’t leave you.
You’re trying to feel calm and accepting for your child but really inside you are afraid, frustrated and confused about the ‘right’ path to follow?
Trying to get your child up and ready for school every day over and over again when they are extremely anxious, in my experience, can feel like a special form of torture - one that can leave you feeling dread when you wake up anticipating the day ahead and can end up feeling like groundhog day if there is no change.
Having now managed my children’s’ school refusal and separation anxiety for years (both of my children have PANS*), I want you to know that I hear you and I see you and that there is nothing ‘wrong’ with feeling all of this and that you are doing an amazing job by just getting up and doing it ALL again the next day.
I firmly believe that the key to supporting our children through these experiences is by getting support for ourselves. No one can hold space for anyone with this amount of challenges on their own for a long sustained time period as we have to do for our children.
No one should have to do this alone. We were not designed or taught to manage these complex needs all on our own.
I’m going to say this again because it’s important and something that took me a long time to absorb and act on; It wasn’t until I started having panic attacks in 2018 that I started to seriously call in the support I needed to survive let alone thrive.
No one should have to do this alone.
Feeling supported is important not just for our own sanity and state of being but it also has a huge impact on our children. Our children learn to regulate themselves by first using your nervous system (by proximity) to co-regulate and then gradually shifting to independent regulation.
If your child is having difficulty separating from you then that is a sign that your child is unable to regulate themselves at this time and, for whatever reason, they are unable to 'borrow' their teacher's nervous system right now.
Doing as much as we can to regulate ourselves, therefore, has magnified impacts. As we become calmer, they become calmer and, over time, more able to regulate themselves despite whatever is going on for them physiologically. Helping our children learn to regulate their nervous systems in new situations is one of the most important skills we can teach a child.
My experience in the last week has really driven home for me how our earlier experiences of going out and doing new things on our own can impact the rest of our lives - it will set them up for a life of growth rather than a life of avoidance.
I’ve been left with a deep certainty that the way we had managed my daughter’s separation anxiety was the right path to follow as challenging as it was at the time.
In the last few weeks, I had been experiencing feelings of terror every time I stepped out of my comfort zone and did something new for my business. It was triggering deep deep fear in me and I could feel my nervous system thrumming with this fear, this terror of stepping out on my own.
I knew it was something that I needed to move through and learn to master because without moving through these feelings of fear, I would not be able to fulfil my desire to support others which I care so deeply about. I would remain stuck where I am.
I knew that I needed to be supported by someone else to move through this and so I had a session with one of my mentors. I was gently guided to the time that I could first remember of feeling that fear: my four-year-old self clinging to the gates in terror crying and calling out for mother to come back after being dropped off for the first time (well, this is my memory of the situation).
I was terrified at that moment and my nervous system was in flight, fight or freeze. I didn't feel safe, and I didn't feel like I had anyone to help me regulate.
I’m not sharing this to shame, blame or judge anyone, I believe in healing from painful experiences so that we can forgive ourselves and others. We didn’t know then what we know now - and even now, some schools and teachers recommend the ‘ripping the bandaid’ method.
This is one of the first memories I have of that feeling of stepping out of my comfort zone doing something new and being over-whelmed with terror and not feeling safe. I went on to experience many more of these moments in my life and I learned to avoid these feelings by not doing anything too ‘risky’.
While I've never been diagnosed, I believe that I had PANS as a child and even as an adult, I’ve only recently experienced relief from chronic anxiety since getting therapy and treatment for neuro-immune dysfunction in the last few years.
My experience with anxiety as a child and adult is the main reason that I feel so strongly about doing things differently with my children. And why I feel so strongly about supporting others to do differently with themselves and their children. As my story relates those moments of terror and feeling alone and unsafe can have profound effects for years and years after - 36 years in my case.
It’s the reason why I have such a deep understanding of how important regulating our nervous system is to lead a happy and fulfilled life. And why I now know that one of the key roles we have as parents in the earlier years is to co-regulate our children’s nervous system until the gradually learn to incrementally regulate themselves.
The good news is that we can heal from these experiences. In this session, I lovingly held my four-year-old self and these feelings of terror and sent the energy of pure and unconditional love - as a mother does when she holds her newborn.
Slowly I could feel my nervous system relaxing, the feelings of terror easing and being replaced with a warm calm feeling of being held and supported. Whenever I feel the fear creep back in I can go back to that feeling of being held and supported until I have a new, automatic, way of regulating in new situations.
If your child has experienced terror from separating from their primary carer, they can heal from these experiences too by being lovingly held in future experiences which will then overwrite the existing memories over time. In order to do this though we need to have moved through our own fears and judgments that we may be experiencing in those moments.
This is a similar process that we used to help our daughter return to school after a very severe PANS ‘flare’ in 2016 my daughter triggered by chronic bronchitis from living in a water and mold damaged building.
She was not able to attend school for nearly a year and a half. The intrusive thoughts she experienced from the resulting brain inflammation created such terror in her that she needed to be touching me at all times.
As her treatment progressed (very slowly) we needed to do a very gradual staged transition back into the school with me attending lessons with her in two-hour blocks, slowly increasing the time I separated from her in the classroom being careful not to trigger her fight, flight or freeze response.
She was part-schooled part homeschooled for a further year after that. In 2019 she returned to school full time, with regular time off needed during PANS/POTS flares. This year we are hopeful she will not need much time away from school.
I resigned from my corporate career in 2017 in order to care for her. It really felt like my life was on hold, my whole day was spent managing her anxiety and rages and her treatment. I knew that this was the most important job I would ever do but it was painful and exhausting and felt unrewarding because the changes were happening so slowly.
I knew that I needed to find a way to experience ease, grace, and joy through ongoing adversity - which is where my journey began connecting back into my intuition and learning to heal myself and my family.
Parenting a child with extreme anxiety, such as with PANS/ASD, is really intense - it can bring up a lot of emotions inside of us:
We question why other children can go to school but yours can’t.
We feel ashamed that we haven’t been able to make it work.
We wonder what we are doing wrong.
We panic that we may never find the magic bullet.
We feel misunderstood by others observing the situation when they really have no idea how hard it is.
We are overwhelmed by all the advice people give and the treatment and therapy they need.
We feel frustrated because there are things that we want to achieve for ourselves that day but all of our time and energy are spent managing our child’s anxiety.
We grieve for the child we had or the childhood they could have.
We have all of these thoughts and feelings running through our heads while at the same time trying to support our children that we love with really really challenging behavior. That is a lot to hold!
My own healing over the years has involved working with different healers to peel back a lot of layers that I had subconsciously acquired; releasing old emotions and beliefs, releasing stuck trauma from my nervous system and realigning with new helpful beliefs, expectations, and energy.
I now feel a lightness for each day. While I still have challenging days, I have the tools and support to move through challenges with ease and hope, despite having two children with PANS (they're both doing so well btw - one of my children is practically healed from PANS and the other one is about 85%).
It’s the first week back at school for my kids and I really reflect on how different it was for them compared to my experience. Both of my children had had a great lead up to the start of the school year. The best ever.
This year, the night before they were a little bit hippity hoppity, a little bit silly and talked about having nervous tummies, but also about being excited. Previously the weeks leading up to school starting had been full of meltdowns and debilitating anxiety.
We had talked the days before about what they were needing on the school morning. Both children said that they need someone to be in the room with them to start with while they were getting used to the new teacher they had only met twice previously.
My husband and I walked them into their classes that first morning, relaxed and clear about what we needed to do to support our children, ready to calmly advocate for our child’s needs if necessary (we didn’t need to).
My eldest turned around as soon as she was at her seat and said ‘you can go now Dad’ and my youngest, after 15-minutes of sharing circle time together, was also happy for me to leave. No crying, no meltdowns, no refusal. And if there had been, I would have calmly listened and helped them to get clear on what they were needing that day. My youngest has needed me there for 15-30 minutes all week.
It’s important that I acknowledge here that this improvement is not just from us working on our own ability to regulate our nervous systems and co-regulate our children’s’ but also for years of intensive treatment for neuro-immune dysfunction and brain inflammation including energy healing/homeopathy.
I am also certain that the work I have done on regulating myself has had a huge impact on them. I can feel the change in myself of how easy the start of the year has been compared to previous years, and how I’ve been able to advocate for my children without self-judgment or anxiety.
I am also feeling really grateful that I am able to give my children control over these new beginnings. To lend them the regulating effects of my own nervous system to support them through these new experiences which may influence how they go out into the world for the rest of their lives.
And so I write to you today to say: I see you, I see all of the parents who are struggling with their children and anxiety about returning to school. I see you and I see how hard it is. And I see the challenges in not knowing what to do or how to support your child in this moment.
I feel deeply about getting support, I would not be where I am today without the support of those who have helped me in this journey. It’s important for me to return that support. And so, I share my experiences with you - despite feeling vulnerable (as you know I’m learning to step outside of my comfort zone).
I have also put together these two memes on what I have learned over the year to achieve ease in managing school refusal and extreme separation anxiety.
How do these suggestions resonate with you? Have I missed anything?
* PANS stands for paediatric acute-onset neuropsychiatric syndrome, which is a really long name for neuropsychiatric symptoms caused by brain inflammation from neuro-immune system dysregulation.