My neuro-sparkly matrescence
Synchronised swimmers
It’s been exactly a year since I asked google a question that changed our lives. Skyelar and I were sitting in the car after another swimming lesson, where she sat in the tension of her life - the longing to participate and the anxiety of being spoken to by people. Together we swam like synchronised swimmers. Skyelar’s body pressed against mine, waiting for me to follow the instructions so she felt safe enough to do the same.
I opened safari and typed ‘Why can’t my daughter talk to adults?’
All year I had been present to Skyelar’s uniqueness, her challenges and her pain, yet I had no language or framework for what she was experiencing. At home I would see this wildly confident, outspoken child full of such joy. Outside of home, I saw a child full of anxiety, unable to speak. Her overwhelm silencing her, freezing her in place.
Slowly throughout the year, the anxiety Skyelar experienced beyond our home seeped into the fabric of our everyday life. Her fear of moving through the outside world expressed itself within our walls in panic and overwhelm. I continued to ask the question ‘What is going on for Skyelar?’ with curiosity and compassion. The only explanation I was given was, ‘It is just the impact of covid on kids’. But I knew it was something more.
Then the ‘Complete guide to selective mutism’ filled my phone.
Talking freely at home, but becoming completely or mostly nonverbal at school or around strangers
Inability to speak even to familiar adults (such as parents) in the presence of others
Difficulty talking with peers in school
Seeming “shut down” or “paralyzed” in social situations
Using gestures, facial expressions and nodding in place of verbal communication
I clicked, scrolled and read with ferocity as Skyelar shouted out to me to drive. Every single thing I read was naming what Skyelar experienced on a daily basis. My gut screamed with relief. I had found the answer to my question.
“So it’s not going well”
With this new framework, so many of the things I had observed in Skyelar found a resting place. The fear Skyelar had riding her bike because she had to pass people on the path; Skyelar’s inability to speak to people she loved in settings outside our home; the freeze response she had when strangers walked up to her; when she could only whisper to Ben and I after talking our ear off moments before. It all made sense.
However, there were also a lot of things that didn’t! Beyond the framework of selective mutism sat the anxiety, stress and overwhelm Skyelar experienced on a daily basis at home. Without knowing, over time, Ben and I made tons of adaptations in our daily routine to support Skyelar. Her growing desire for order, space for her compulsions and need to do things a very particular way had exponentially grown.
During Skeylar’s NDIS assessment, I brimmed with pride when the NDIS worker asked me about Skyelar’s toileting habits. “She toilet trained really early! It’s going really well.” Then I unpacked the routine, “Skyelar needs me to be there with her, even at home. Then she needs to take off her jumper and shoes. I need to wipe the seat and spray a lavender mist a certain number of times. I need to be in sight, but not looking directly at her. Then she’ll go! But she won’t wipe, won’t flush, and won’t wash her hands.” The NDIS worker stated in response, “So it’s not going well.” Then we then went through the same process with getting dressed, eating food, falling asleep and socialising.
As we entered the NDIS and healthcare system, labels were thrown at us like ‘disorder’ and ‘developmental delay’. There was so much we were yet to learn about ableism, within and around us. We didn’t have the tools yet to question our culture’s definition of “normal”. At that time, our world as we knew it felt like it was dramatically shifting, whilst in the day-to-day our amazing Skyelar was exactly the same.
Back to school in my 40s
Life outside of Skyelar felt like it stopped whilst I sought to support her with our new understanding. Alongside selective mutism and anxiety, we began exploring neurodiversity. We held compassionate space for Skyelar’s needs, attended appointments every second day and tended to our own emotional response as it swirled around us.
Then one day, Skyelar’s psychologist told us, “You'll need to prepare for Skyelar to be non-verbal at school.” With those words, the last fragments of what I thought my life would look like the following year smashed to smithereens. It was recommended that Ben or I would need to attend school with Skyelar. We felt in our gut that there is something for Skyelar within the school system, as long as we could support her within, through and around it. So whilst my friends prepared to reclaim more of themselves post the first five years in the parenting trenches, we were preparing to go “Back to school!” Billy Maddison style.
The breaking open of my matrescence
As we came into this new expression of supporting Skyelar, I was only just coming out of a season of challenging mental health related to infertility depression. Ben and I were stretched thin from holding space for Skyelar in such an intense way. It felt like we were at the end of our internal resources, and yet, we were only at the beginning.
Everything that I was experiencing was new, yet felt somewhat familiar. My identity as a mother was breaking open again, challenging my expectations of motherhood and unravelling my social conditioning around parenting. I was experiencing a new layer of my matrescence and it felt equally as intense as when Skyelar was born.
I felt the inner split of woman and mother pull at old scars. My heart longed for Skyelar more acutely and she was all I thought about. The hopes and dreams I had for my career, whilst still present, faded into the background. I could feel my identity of ‘mother’ calling to take up more space. Alongside the grief in setting aside a career I had just fallen in love with, I felt at peace with my matrescence.
Chatting with Gabor
One day at the beach, I was reflecting on the year ahead, chatting to the Divine. In a moment of despair, I called out to the Divine Mother. “I just want to take Skyelar’s pain away”. I felt her respond, “Hang on, let me get Gabor for this one!” So I imagine the Divine getting trauma, addiction, stress and childhood development expert Gabor Maté for me. “Dusk,” he gently says in his Hungarian-Canadian accent. “Remember that trauma is not caused by an event, trauma is being alone afterwards.”
Looking out at the blue, still water, I felt a deep internal shift within me. I couldn’t prevent Skyelar from experiencing pain, but I could be with her in it. My role as her mother is not to stop the world from hurting her. My role is to be with Skyelar in everything she feels from being human.
For so long, I had felt like I had failed Skyelar as a mother. I had failed at taking away her pain, distress and overwhelm. Yet here, in the gentle summer breeze, I let go of that unrealistic expectation. I reclaimed one of the most important values to me - presence. The revelation came just in time to start school.
Struggle, overwhelm and pockets of joy
The first half of the year is a blur to look back on. It’s a montage of images of struggle, overwhelm and pockets of joy.
Ben’s exhausted face after being in the prep classroom all day, then painting all night. The feel of Skyelar’s bed as I sat with her till she fell asleep at 10pm each night after hours of being with her emotional overwhelm.
The pale blue walls of the school staff room when I took over from Ben and worked from the school for most of term one. The feel of Skyelar’s arms tightly around me as her aide brought her in for hugs.
The guttedness of having to move out of our home, our safe haven within the storm. The grief, vulnerability and insecurity of renting in this climate.
The hours of separation refusal every morning before school, Ben and my nervous systems wearing with the intensity of holding. Skyelar’s face grinning from ear-to-ear as she says, “That was the best day ever!” at the end of every school day.
The contrast between Skyelar’s struggle to separate and her absolute joy at school was incredible. When Skyelar was at school, she was the happiest kid in the classroom. At pickup time, I would peek through the windows and see her curls dancing as she bounced across the room.
It was a good six months of hard slog before we began to feel a lightness flow through our lives. Term three came, a corner was turned and Skyelar’s separation challenges softened.
The inner transition
Alongside all the external work of navigating school transition, I was experiencing an inner transition. Throughout my experiences with Skyelar, I was confronted with my internalised ableism. Without realising, I had developed an expectation of parenting that I felt entitled to. This involved parenting a child that progressed through the developmental stages according to neurotypical standards.
When Skyelar didn’t hit those milestones, I felt somewhat robbed. When she would call me to wipe her after using the toilet, I would be so frustrated that she couldn’t wipe herself at six years old. Our cultural model of care encouraged us to use behaviour charts. Out came the stickers and with it an immense amount of pressure.
One day, as I felt the frustration rising up in me as I rolled the toilet paper into a pile, I wondered: What would it be like if we let go of all these developmental expectations? What if we just gave Skyelar the space to be where she is at? What would emerge if we let go of where we thought she should be?
I began to see how I had been shaped to expect a certain kind of child. In pregnancy, I was told, ‘All that matters is a healthy baby’. But what does ‘health’ even mean? In every maternal child health appointment, I was told where my child should be at and praised for when she met the brief…until she didn’t.
The sticker charts came down and I began to let go of my expectations on Skyelar. This allowed me to see Skyelar, not as I thought she should be, but for who she fully was in the present moment. And my goodness, what I saw was heart-stoppingly beautiful.
I began to see the deep empathy Skyelar holds for the earth and all its living creatures; the intensity of beauty she sees in the world around her; the depth of love she feels for her special people; and how all of this joy can also be so overwhelming.
I found new ways to connect and communicate, respecting her sensory needs; holding back when she was overwhelmed; meeting her nervous system differently; letting go of how I want to receive love and embracing the ways she expresses it.
Opening a door
Somewhere along the way, we discovered that Skyelar is autistic and I set an intention to create a positive neuro-affirming family culture. Whilst I was focused on Skyelar, little did I realise I was about to get schooled on my own neurodivergence.
Over a cup of peppermint tea, a friend nonchalantly asked me, “Have you ever considered that you might have ADHD?” When I replied no and asked them why they thought that, they just swept a hand across the room. My gaze followed a string of chaos and I saw the evidence of what I now know to be external expressions of ADHD.
The question stayed with me like a rock in my shoe, constantly drawing my attention to it. There was so much that resonated with my internal landscape of overwhelm and my lifelong struggles with domesticity, organisation and functionality. Through much exploration, I came to a place of self-identification, as well as an official diagnosis.
For such a long time, I have felt like a failure at being a person. So much of the daily function I see others sailing through, I have found paralysing and overwhelming, compounded by the constant noise in my brain. I now realise that I am not a failure, I have just been trying to live up to expectations that are not aligned with how I move through the world, much like my daughter. The compassionate embrace I have for Skyelar, I have extended to myself and life has found a new softness.
Looking ahead
As I come to the end of such a significant year, I am excited for the neuro-sparkly culture we are creating in our family and community. I am aware that there may be rough seas ahead. I also trust that we will meet ourselves and one another with the invitation to be fully ourselves, just as we are.
Thank-you for reading this reflection. If you would like to share anything with me in response to this blog, please feel free to email me at hello@duskliney.com
