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We can reframe our experience of parenting autistic children

Oct 16, 2022

Trigger warning: functioning labels, mention of suicidality, marriage separation
I am a parent of four and a full time carer.

I know within the autistic community, there are those who oppose the term “carer”, and I’m still going to use it.

This is my story. My experience.

When I was new to being the parent of autistic children, my indoctrination was watching horror stories in the media about how our lives were going to be over because..autism.
I would wake in the night, in a panic attack, sitting up in bed and sobbing.
I was depressed and anxious for a very long time. Years.
As a family, we were never told anything good about our children being autistic.
I saw parents sobbing on an Oprah Winfrey episode, nightmare stories on current affair programs of lives being out of control; stories of divorce rates being sky high as a result, bankruptcy, all the worst things you could imagine (I could imagine worse to be fair).
This was my beginning to parenting autistic children.
All the therapies. All the supposed “sacrifices”. All the well meaning but hurtful comments from others.
I want you to know something:
I hung in there for dear life, clinging to hope, white knuckling it and dying inside trying to avoid our lives becoming like those in the media.
Little did I know I was autistic too. As was my then husband (yep, then). As were our other children. As was our child yet to be born.
I was studying a Masters in Autism so I could ‘learn about and understand’ autism better.
Then, one day, I decided I was ready to be happy and free from it all. By decided, I mean I burnt out and became extremely unwell.
I got tired of the internal battle, the self doubt, the gut feeling that some of the professionals were making it up as they went along just as much as we were..
I saw the pain and tension and rotting from the inside it was creating and I was ready to give it all up.
And yet, I was unable to find other parents within my circles that were happy and ready to move forward into a new phase of acceptance.
I had to make really hard choices about letting go of people, places and things in order to create the life I wanted for myself and for my children.
When things felt too hard to let go of or change, I settled on making the choice to be WILLING to let go or change it. And I gave myself permission, compassion and time to come to terms with things.
Interestingly, ten years later, I move in circles that are immersed in autistic identity and culture. Actual autistic people and their families.
I am now a single parent.
I am a full time carer to one of my children, as they require 247 care and supervision.
All the worst things I could have imagined back then, the life I was told was awful, actually did become my reality, and yet, I am happy.
I regularly face the same types of care and clean ups sold to families are catastrophic, there isn’t anything you could tell me about around sensory seeking or behaviours or things said or done by our kids that would shock me.
One of my children is now bigger and stronger than I.
I regularly find myself in the position of not having answers, not knowing what to do, but having faith in myself to learn from it all.
I have had to prepare for the future in unimaginable ways regarding one of my children, and I still continue to live in the moment; in the now, for today, utterly besotted with Mothering my children and getting to know myself.
On a daily basis, there are BIG challenges.
I don’t have family nearby. I don’t have people I can call on.
My children are now 24, 17, 11 and 8 years old.
I am 43 years old.
And I am deliriously happy. Liberated. Deeply satisfied with our lives.
I have an unwavering faith in myself that still blows me away.
I am learning more and more about my strength and ability as a woman, and a Mother.
I began having children at 18, when I was deeply traumatised. During that pregnancy I was homeless and often had to steal food to nourish my baby within, and myself.
I’ve had seriously dark times in my life.
My life is not easy. I know people out there think that it must be, because I am happy.
People think I don’t know what it is to parent a child who requires my care 24/7, who struggles to sleep, and all the things you read about in connection with those who are ignorantly and hurtfully labelled as ‘severely autistic’ or ‘low functioning’.
Many come to my page and make ignorant statements such as “well you might think differently if your child was suicidal” or “yeah, your children are high functioning”, or “you’re in denial, the future is bleak for our kids”, etc etc.
You’re wrong.
I wouldn’t; I don’t.. think differently.
I’ve experienced it all, and then some.
I don’t publicly discuss it because I choose not to, and these are my childrens’ stories and not mine to share without their consent.
The grief, the trauma, the pouring over all the things that are yet to come..
I spent years in that space, and I refuse to hand over another single moment of our lives to the what ifs and the what’s to comes as an exchange for the now.
My children deserve to be happy. My children deserve a Mother who is happy, joyful and present.
I am living a life that many of you, who come here, describe as hell.
It is not my hell.
What changed for me? How did I get here?
I learnt about myself, being autistic, stopped reading the textbooks on autism and immersed myself in understanding identity and culture.
My thinking, my understanding, my relationship with myself changed.
My circumstances did not.
Is my life easy? No.
But the things I once thought would kill me; the things that once brought me to my knees are but a normal part of our everyday routine today and I’ve learned how to manage it, and then sometimes I don’t ‘manage it’.
Believe me when I say, you can dig deep, rethink and reframe your understanding of yourself and your family life and live harmoniously with it all.
This is not toxic positivity.
It is radical acceptance.
Be aware of the difference between your actual experience and that which the media and others will tell you is your experience.
KF x

(Image is one of KF's children happily playing in the back yard sandpit. Their image is blurred, and the view is through the backdoor with plants in view.)

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