Grief is normal. Grieving the loss of what you thought would be your normal, that you need to grieve, feel sad that you did not get ‘normal’. It’s okay to wish that they were different. That your child was someone else.
I have read these words in posts over and over in parenting groups for autistic children. Every time I do, my heart breaks a little bit more for every child they are referring to. I am an autistic parent, diagnosed a day after my thirty-fourth birthday. I started to suspect that I may be autistic when I had my youngest son, and from a very young age he showed a lot of sensory seeking behavior. After reading about sensory processing disorder and going down a wormhole into the wonderful world of neurodiversity, these autistic behaviors described in the articles and books also described me completely.
I have not had a quiet life or a remarkable life. There were ups and downs, times of great joy, times of heart wrenching sorrow. Days that seemed never ending, days that were a mere sigh, but I wish that lasted a lifetime. The day I cried in the playground because I was called weird, the days I now embrace that I am unique, a multi-faceted glorious whirlwind of specialized knowledge, of dancing in my kitchen, singing, drinking in the wonders of clear moonlit nights when I am at my most free and I look at the stars and see immortality. Days I ran free as a bird as a child, loved and accepted by my family and the days where I have to hide in my bedroom for an hour because the sensory overstimulation of two loud children, televisions and all the other sound crests inside my head and washes over the ability to cope physically and mentally any more. The wonderful day my fierce and passionate daughter was born. The day I married my husband, who is thankfully forgiving of a wife who constantly loses things and cannot ever be on time. The day my youngest son was born, my shiny sun in nature as well as name.
This is not a life of grief. I have shared with you many moments experienced by humans of all types of neurodivergence. First love, heartbreak, marriage, children. All elements of what is considered a ‘normal’ life right? There is nothing remarkable here. Many of you reading may be married, parents, family members, perhaps just a person who reads the paragraph above and can see a life that has been lived with every nuance of emotion, who also loves the night, or dancing, or who was bullied at school for being different.
Like some of you reading this, I have experienced loss. The death of a grandparent, a great-grandparent, a friend, a work colleague. My first son.
My child who now talks to me in in the whisper of the wind and the drumming of the rain as I type this. An unexpected loss, we shared only thirty-two hours before it was time to let go. Years of love and memories to be made stolen from us by chance and cruel twist of fate. Eleven years, and it is a lifetime yet a single heartbeat in one. There is a part of me that forever will be missing, but never far, holding the hand of a blonde boy with sapphire eyes and his mother’s nose. That pretty picture still does not change the depths of grief the soul plummets through when you make the decision to turn off the life support keeping your child in a semblance of the living. To weigh the scales between what is futile hope and what is reality, what is selfish and what is right. Of living with survivor’s guilt, to think you killed your child.
I look at my rainbow children and find joy, happiness and a taste of bitter sweet regret as I watch a quiet miracle unfold as they play a game together and I look 6 inches above at the picture of my forever young son. A part of our family he will always be, but my days have always been a shade darker since the day I held him and said goodbye. This is grief, this is a life unfulfilled. To never feel a mother’s cuddle, a lover’s kiss, or to watch their grandchildren grow before them. Not even a first birthday. Is this not tragedy?
After this, how can I not be pained when I read the words of parents who say they grieve the living, breathing existence of their children because they did not sign up for a disabled child. A child who is selectively mute and needs to use written communication when they cannot use speech. A child who struggles to contain their joy of life and who spins and shouts ‘too loudly’, or one who needs solitude and hides in their room away from all family because the over stimulation is too much. Who cries at the party they did not want, who is selfish because they will not share a treasured best soft toy friend, who is struck into the cast of ‘that naughty kid’? For all their challenges, every day my children experience things my deceased child never will. The wind, the sun. Things he never knew or saw.
Accept your children for the people they are. They have a lifetime to learn and love and one of the biggest influences in their life will be you. Fill their days with love and acceptance, with understanding and compassion. Listen to their voices and seek out other autistic people and truly listen. Listen to our songs of embracing ourselves, of positivity and encouraging the autistic self. We do not sing a dirge of intensive therapies to teach compliance and masking of the soul, that itself a little death, hidden under quiet hands. Come and listen to our songs of support, of joy and color with a depth of emotion and understanding that is in every single way just as nuanced and capable as every person reading these words.
Save your grief and lamentation for the dead. For a life taken before due time, something lost and never regained. Life is joyous and even a small hope or moment of light can be found even in the darkest of days. Celebrate your child’s life whilst they are with you, do not waste time with shame and regret when they are right there. Trust me when I say every moment is a gift.