Nobody expects to become a special needs parent.
Though we are all compassionately aware of people with disabilities within our communities, we never imagine that we might too, one day, count our own child among them. All of us have dreams of what our future family might look like; of the things we will ensure to do as parents, of the things we’ll ensure not to do as parents, the values and principles we’ll bestow upon our children, the milestones we’ll experience with our children, and how we’ll teach them about the world. And when the day comes that we realise that our life will not follow the blueprint we had in mind, the turmoil of emotions we experience, can knock the breath right out of us. We begin to question what the future holds for our child and for our little family.
This is where grief creeps in. It’s a grief that only a special needs parent can know how to describe, because it’s a dichotomy of emotions. On the one hand, you couldn’t love your little one any more than you do, they are perfect in your eyes. And on the other, you are wounded when the world seeks to tell you that they are somehow “deficient”. On the one hand, you wouldn’t change a single thing about your beautiful kiddo. And on the other, you’d change whatever you could do, to try to protect them from any additional struggles in life. On the one hand, you’ll hear some people describe autism as a “gift” or a “superpower”, which it can be at certain times. And on the other, you’ll struggle to see past the very real way autism can be a thief of Joy, at others. And though you couldn’t imagine having a different child than the one you are loving, nurturing, learning from and raising, you will still sometimes wish that autism wasn’t so intricately woven through their DNA.
This grief comes in waves, moving you through all five stages – and back again – until you find a place of Acceptance. And, even after you’ve fully accepted and even embraced autism as a part of life, you will still be triggered by random places, faces, words, thoughts, feelings and occasions, and feel the sting of that grief anew. A fellow writer calls it “death by a thousand paper cuts” and I couldn’t possibly describe it more aptly.
The most important thing to remember is, that your journey is different – not less. Your child is not his/her autism, but he/she cannot be separated out from it either. Autism is not who they are, it’s a disorder they have. And in finding acceptance of this complexity, we begin to come back down to earth, and ground ourself in the present moment with our incredible children – who experience the world in the most amazingly unique way.
When my son was first indicated for autism at 18 months old, this poem, written by a fellow special needs mom, brought me a lot of solace. It perfectly describes the first moment you realise your life is about to take a different path. And how, there is still so much adventure, and beauty and hope, in your unexpected but incredible journey.
