We judge ourselves harshly, but there’s no-one more in-sync than a mom and her child with additional needs. We are their “person”. Their translator, their guide, their protector, their comfort, and their forever buddy. We are everything to our children.
From the first moment we sense a vulnerability in them, we begin to weave an invisible thread between us, keeping them close to us, keeping them safe. As other babies outgrow their newborn needs, we find ourselves still tending to the same level of need, but in a toddler. We begin to realise that our special children need more of us than most anyone else does, and we dig deep to deliver. We get on their level, and try to see the world through their eyes, so we can better understand their thoughts and feelings. We spend countless hours prepping, planning, and executing simple tasks and care routines, to allow our kiddos to feel at greater ease. We test their tolerance levels from time to time and adjust accordingly. We’ve dried more tears and cried more tears, than most parents could imagine. We do so much mental and emotional labour that other people just don’t see. Because all we want – like any other mom does – is for our children to be happy, calm and content. To sleep, to eat, to walk, to run, to learn, and to speak. But all of these things take a level of input from us that sometimes leaves us breathless. And a level of discernment we hone over time.
Reading our children’s emotions is an art. Scanning for signs of trouble is a practice. We grow and evolve right alongside them, as we are both on this journey together. But we can never know exactly what our children experience as part of their autism. Autism is woven through their every perception and experience. It’s the lens they see the world through. It’s the weight on their chest when they try to move like others do. It’s the hurdle that stops them getting out the front door. Whatever we are witnessing, their lived experience of autism and their dysregulated moments, is far worse for them than it could ever be for us. We have no concept of the level of their frustrations or of the depths of their despair. But we do walk a kind of parallel path with them. Our nervous systems align minutely with theirs. In their happy moments, we feel calm and content. In their unhappy moments, we feel a panic and fear. Their many joys are our highest peaks, and their occasional heartbreaks are our deepest valleys. When they become dysregulated, and their bodies flood with cortisol, ours do too. So although we don’t experience the full lived experience of autism, we are often in fight-or-flight right alongside our affected loved ones. This is a physiological phenomenon that no typical parent could possibly understand, because they’ve never walked our path.
Our bodies respond to our child’s autistic struggles just as much as our minds and hearts do. So how can we help them, if we too are in crisis? Well, it takes time and practice to mindfully calm ourselves just as they’re escalating. Eventually, we learn to anticipate, and respond instead of reacting. We make mistakes along the way, a lot of them, but we persevere. Because that’s human nature, and that’s what moms do. Even when it’s two steps forwards, one step back, we keep trying. We keep showing up. And eventually, we figure a lot of things out. But that invisible thread, that unseverable umbilical cord, may remain in place between us and our children for many years to come. Maybe even all our lives long! Because each of them is wonderfully unique and their level of need is too. Hopefully, with therapy and supports in place, that need lessens in time. But let me tell you that the hard will always be hard, no matter how old they are, because… that’s the gig. So take a deep breath, hang on tight, and scream if you need to, but don’t forget to take in beauty of the world from a height, because we’re all aboard the cortisol rollercoaster!
