Special Needs, or Additional Needs, parenting is a topic so close to my own heart. So writing this blog post has been very hard for me because it’s something I live very vividly every day, and will for the rest of our lives. But it’s also the reason I became a Wellness Coach – I had seen myself and see my friends who also have children with disabilities, crumble and need the extra support and coping skills to get through this life.
My beautiful 10 year old daughter Jovie was diagnosed with a rare genetic disorder called Rett Syndrome about 7 years ago now. No one ever expects this kind of life for their children, or themselves, but yet we are thrown into it and often without the proper support around us to deal with the ongoing stress that we experience as a parent and/or carer.
I’ve made my experience with my anxiety disorder (GAD) and panic disorder no secret – looking back now, because I didn’t deal with my reaction to the diagnosis properly, I feel like it was my body’s way of manifesting the stress and sadness by throwing me into almost daily panic attacks and anxiety issues. I wasn’t taking care of myself, because I wasn’t aware that I needed that deep down support from others and to also listen to my own needs, because I was no longer making myself a priority in any way, shape or form.
And my story is not unique, this happens so much in the special needs world AND in the regular parenting world too. We get too focused on taking care of everyone and everything and find yourself in trouble – mentally, physically, emotionally..
So many things have helped me climb out of my own hole, and I need to stress that if you are having troubles with your anxiety or any other mental health issue – you need to see your doctor ASAP. Please do that okay? But one of my lifelines was learning about mindfulness and applying it to not only my daily life but when I was really anxious or having a panic attack.
How did mindfulness help me as a special needs parent?
ONE. Self Awareness
As I mentioned above, I wasn’t really aware of what was going on inside of me and how it effected my thoughts and decisions.
I think alot of us say “OF COURSE, I know what’s going on” but we’re not actually listening. These days, I can notice myself getting too impatient, doing things too quickly and expecting others to do the same. I’m able to notice that, and intentionally slow down. And in turn, my stress levels do go down.
Stillness as a parent sounds crazy – but as a special needs parent, it’s essential to know that you need stillness in order to calm your nervous system down. We always seem to be on the go, so it’s important to bring your body and mind back to a state where you are not always fighting something.
Practicing a mindfulness meditation, or just having mindful moments throughout the day doing regular things, slows you down and can create calm in an otherwise hectic environment.
THREE. Self Responsibility
Mindfulness also brought me a chance to take care of myself. While I was also going to regular therapy for my anxiety, mindfulness I could take with me wherever I went. And it became a way for me to take back control of my mind and body.
I was the type of person who would do 2 things – wait until I was experiencing some pretty yuck physical and mental symptoms of stress and anxiety and THEN go ‘oh i need help’. But then I would also not listen to myself when I wasn’t enjoying something or saw something that might be great for my mental health, and didn’t invest anything into myself because I didn’t think it I was worth it.
I absolutely know what it’s like to be a carer, no real income, high needs child, other children, running a household, trying to keep everyone healthy and happy – and to forget yourself. But it’s not anyone else’s responsibility to look after us. It our responsibility. And we need to figure out how to do this in a way we can afford, and that is actionable, regularly.
I don’t claim to be perfect here, lol. But we’re coming up on 11 years with our sweet Jovie, and there is so much I’ve learnt along the way, that I want others to know. Mindfulness has been the most helpful ways to cope with the ongoing stress and heartbreak of a having a child with an incurable, genetic disorder.
This will be my life’s mission – to keep us calm, mindful and inspired to live a life we both deserve — will you let me know if you’re interested in seeing more posts like this about special needs parenting and mindfulness? I’d love to know what kind of challenges you’re having with your own mental health as a carer/parent/everything.