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Where my grief came from.

autism parenting selfcare Jul 14, 2021
This morning as I was barefoot walking through the garden, connecting with the earth, I felt a deep sadness come over me.
 
My instinct was to push the sadness away and to think of something else fast in order to distract myself; but as soon as I became conscious of this, I returned to the sadness.
 
I decided to continue walking, breathing in the sounds and the warm air and committed to sitting with the discomfort of that sadness.
 
I wasn't sure where it was coming from.
 
I didn't know what it was about.
 
I stopped and basked in the joy of watching my daughter, running through the garden, stopping by each plant to pull a sample to smell and run through her fingers.
 
She raced back and forth, letting out her glee with her beautiful verbal stims.
 
I became aware of my husband standing next to me, watching on as well; both of us smiling.
 
"God. She is SO beautiful." I said, before feeling a buzzing in my chest.
 
The sadness.
 
I realised at that moment what the sadness was.
 
It was the grief, the guilt, the loss, the physical ache for the precious moments I worried away.
 
It was the anger. The despair and frustration over the precious first years I was encouraged to be so heavily fixated on the could nots and the does nots and the may nevers with her.
 
My daughter represents everything that is good and perfect and beautiful in my world.
 
She is non-speaking and extremely communicative.
 
She appears distracted and is deeply connected.
 
And at the moment I felt into my sadness and the part of me, that part of US as humans that loves to punish us told me that I don't deserve her.
 
The grief of engaging her in variations of ABA therapy, not recognising her distress, only focusing on the books and not my child's communication, not seeking out the autistic community and taking all my "instruction" from non-autistic professionals who were book-autism-centric, not knowing about sensory overload, not knowing, not knowing, not knowing.
 
Living in the fear of what will become, and angrily shooing away what is now.
 
I made so many mistakes. Have done, still do, will do.
 
All of my children I've made many mistakes with.
 
I've yelled and screamed, I've clenched my fists and gritted my teeth, I've threatened boarding school and taken away comforts.
 
"I worry I've failed her" I whispered to my husband.
 
The good old "Am I enough? Am I failing? What if I did this instead? Why didn't I do that? Remember that time?" book is one I pull down from the proverbial dusty shelf every now and then, take a look at, stare at the pages and take in the words for a while, then close it.
 
Over time, the shelf gets dustier and the words on the pages change.
 
Gradually, they become less harsh. Less punishing.
 
The second last page of that book reminds me that when I sit in the despair of my mistakes and what I perceive as my failures, I build an energetic barrier and prevent my beautiful children from accessing the safety and true love they seek in me.
 
When I consistently punish myself, go over all the things I didn't do, I keep my children at arm's length.
 
The final page of that book?
 
A gentle and loving reminder to be self-compassionate. To look for the lessons in my errs. To take that sadness and all of those potent emotions and create something better, something beautiful, something different.
 
A new narrative.
 
And to share it with others.
 
My children want and deserve the best of me.
 
They only access that when I am invested in the essential care of self. Whatever I create for myself, I can then share with my children.
 
We can't know what we don't know until we know it.
 
And then we do differently.
 
I will continue to make mistakes. I am the wrong species if I expect not to.
 
We make amends by beginning the process of cultivating positive neurodivergent identity and culture and it begins in our family home.
 
 
- KF
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