There was a season that seems like a lifetime ago and yet feels like yesterday.
My daughter was 20 months and it was September. When I was a shell of a person and my daughter was a shell of a child. When I was unreachable and my daughter was even more unreachable.
I felt disempowered and isolated.
I typically describe our days during that season as surviving from one meltdown to the next and the space in between. I was new to autistic characteristics and my daughter was doing her best to communicate nonverbally and survive my ignorance. We weren’t sleeping, bathing, or laughing. It was a tough season.
Eventually, in our own time we started to enjoy life again. Not in the same way, from a different lens. My daughter, I clearly understood, was neurodivergent. And the trajectory of my life had changed, as well. And I moved from accepting that fact to embracing it. In time. It all takes time.
I share this particular time in our lives, this season because our story-while personal, isn’t unique. There are millions of caregivers at this very minute experiencing something very similar, whether they are caring for a child, parent or partner with different abilities or significant needs. As the health pandemic continues, we continue to experience its far reaching impact and strive to stay resilient in the face of distancing, isolation, and loss.
September is a beautiful month. It signifies a change in seasons. Time passes. And we need to be gentle with ourselves as we move through them, good, bad or otherwise. Therefore, It is the perfect month to step into self advocacy and celebrate National Self Care Awareness Month.
When I speak of self-care, I speak from the lens of a caregiver. Because that is my life experience. And it wasn’t until I had a child with special needs that I truly recognized the importance of developing a practice of self-care.
Brene Brown often speaks of shame and it’s magnitude. And I’m going to be bold here – when it comes to caregiving there is shame attached. It’s as though, as caregivers we aren’t allowed to speak of being tired, exhausted emotionally, mentally, and physically. And when these feelings go unspoken and unaddressed, we become unhealthy.
As I write this, I think specifically of fellow special needs parents out there and caregivers of all capacities; including professionals.
There isn’t enough support for caregivers. Caregivers experience depression and PTSD, not because our loved ones are a burden, quite the opposite. It’s a privilege to be a caregiver. I can think of no greater honor. No, the people that we are caring for, those that we love most in the world are not burdening us. No, we are burned out because we lack our own supports and services. It’s the not-so radical notion that we need service support and a care plan too. After all it is called, “care-giving”. Once these needs have been addressed, I believe we as caregivers will see an improvement in our mental and physical health and better long term care for our loved ones in need.
So, as I sit here and think of self-care from the lens of a special needs mama, two words are called to mind; permission and grace.
Give yourself permission to not be okay. To not do it all. To say No.Or Yes and then cancel at the last minute when you realize it is not the best choice for you or your loved one that particular day. To set boundaries. And then give yourself grace, to not feel shame or guilt for expectations not met, for rest, for self-care.
Now, let’s be real. I still need to prioritize my self-care plan. It’s not as though I have practiced self-care, graduated and am immune from burnout syndrome. The world is demanding and we are not designed to thrive without rest. There are days that I am exhausted and overwhelmed. There are regressions and challenges, juggling a family, work and my own autonomy. We all have our days (or seasons) when we need to cry Uncle and say, sorry we can’t play today. We need rest, gentleness, and each other.
But you know what? It is a day, no longer a season thanks to care. Essential care that starts with me. I put my oxygen mask on first. See how that works?
During September and the subsequent seasons that follow, let Mother Nature be our teacher. Leaning in and listening to our instincts, growing and resting when the season calls us to.