It's her time to shine.Jul 15, 2023
Trigger warning: ABA, restraint, compliance therapies, autistic child.
I don't typically share such personal stories about my loved ones, but I feel this one is really, really important.
She’s 12. I knew she was autistic in her infancy. I had to wait for everyone to catch up. It was incredibly lonely and I was incredibly afraid.
She showed me that I am autistic and her being autistic was the catalyst that shifted me onto a new trajectory.
She paved the way-for learning, evolving and growing. She helped us reframe what we thought we knew about her older siblings, and she helped to prepare us for her younger sibling.
She has suffered.
She is 12. Twelve.
At twelve years of age, she has endured a lifetime of others (adults) speaking about her in her presence in ways that dehumanised her.
She is non speaking. Inevitably she is undermined, dismissed, discriminated against and overlooked.
She is 12.
ABA before she was 2. 30 hours per week. I didn’t know better.
I didn’t know.
They’d take her blanket and headphones and put them away, leaving her to cry all day.
They’d restrain her when she attempted to rock.
She is 12. And then, she was a toddler.
There is such immense trauma.
She stopped playing with us, and stopped trying anything new.
There were weeks and weeks where she’d spend the entire day in her room.
She was afraid to come out. Afraid of where she’d be dropped off. She wasn’t safe with us because we hadn’t tuned in to her communication. We’d been conditioned to only accept the forms of communication we knew and understood; we could not hear her.
We pulled her from all therapies.
She started to come back to us.
We delved into her joy.
She has been the quiet observer of all that has been, all of the stress and anxiety we experienced as a family for ten long years.
She has endured so, so much.
Two days ago, I stood in the kitchen with her and told her I’d emailed the specialist school principal to let her know we were withdrawing.
She has actively avoided school on and off for years. For almost a year, we were scared. Every morning was horrific. She was terrified.
So she stayed home.
She learned to shout “Stay home!” and I’ve honoured that request.
I told her how sorry I was for all that she has gone through and for how long it has taken me to catch up.
Some big emotions took place between all of us.
She has been completely dependent on me for 12 years. And in many ways, I, her.
Two nights ago, she got up and made herself a bottle of soda water from the soda stream. I stood, gob smacked. Yesterday, she and I sat together, nailing in coloured shapes to cork board to make pictures.
I’ve not been invited to play, since she was a toddler.
Every moment is not an opportunity for therapy with your autistic child. Please. Believe me. Don’t trade connection for deception.
We played. We laughed. She leaned in often, nose to nose.
I love her so much my chest hurts.
Tonight, she asked me to colour with her.
My heart skipped a beat and I felt dizzy.
She asked me again “Draw a birdie and colour it.”
We sat and drew. I pulled out charcoal and we drew and smudged and wiped it on our arms and faces and laughed together.
She turned to me and handed me a picture she had drawn of a rainbow.
“Is this for me?” I asked. She turned and leaned in and touched noses. A quick smile and she turned back to her drawing.
I cried. A lot. Joy. Sadness. Guilt. Excitement. Relief. Unworthy.
I explained to her younger sibling that this moment had been the first time in her sister’s life that she had drawn a picture for me and handed it to me.
She will be surrounded by a team of autistic allied health professionals.
Trauma recovery has begun for all of us.
Those years I spent invested in the ableist, abusive, neuronormative focused ‘therapies’ are the same years
I can never get back to enjoy my beautiful baby.
Listening to, learning about, being curious, opening our minds and paying attention to the child in front of us and not generic frameworks and stereotypes is crucial.
Our connection with the child we HAVE and not the child we’re conditioned to believe we SHOULD HAVE is crucial.
I get a new opportunity now, to do right by her.
To listen and to understand.
To accept. Radically accept.
And she is showing me that she feels safe enough to let us see who she is and what she truly can do.
Edited to add: Thank you to my non speaking neurokin, for writing about and sharing so selflessly your experiences. You are changing, and saving lives.
- KF x
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