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What does ‘good enough’ look like when you’re raising a disabled child?

Penny Wincer by Carmel King
Penny Wincer by Carmel King

by Penny Wincer

Good enough mothering. I spot it easily all around me. I see it in my friends: I see the love, the devotion, the balancing acts, the mistakes, the triumphs and the failures. And together all those things add up to one thing. Good enough. Why then, have I struggled to see ‘good enough’ in myself until recently? My eldest child is now nine and he is autistic. He is low verbal, has intense sensory needs and learning difficulties. When he was diagnosed at age three, I had no real experience with disability. Evenings were spent poring over websites, researching therapies and trying to get my head around the new world I found myself in. With no touch point within the NHS, and no services forthcoming, I was completely at sea.

At every appointment, either medical or educational, I was told by professionals that I was my child’s expert, that I knew him best. I did. I knew him better than anyone, yet I felt like I hardly knew how he experienced the world at all. It was utterly terrifying to be in charge of this beautiful, joyful but anxiety-riddled child with virtually no guidance. I saw ‘good enough’ parenting all around me. But that kind of ‘good enough’ barely seemed to touch the sides with my son. No amount of affection and love bombing satisfied his need for attention from me. No amount of talking, singing and playing had him chatting or playing in return. I was expected to be exceptional. And I didn’t know how to be.

With a disabled child who needs a variety of support and intervention, I became accustomed to explaining myself. Whilst support from outside the family is essential, it also comes at a high price. In my experience, I felt that every choice I made as a parent was scrutinised. When I asked some professionals for help, what I got in return was critique.

The pressure I was putting on myself was a combination of societal expectations of what a ‘good enough’ parent does, as well as my own fears that I would be unable to sustain that indefinitely. But if I loosened my grip, let myself off the hook from being the hypervigilant therapist and took the time out I needed, perhaps sustaining it wouldn’t be so hard.

At night I would read articles about early intervention and its vital importance to good outcomes for autistic children and I asked myself, am I providing enough? Have I spent enough money? Am I trying hard enough? But the answer was elusive because there is no way to quantify ‘enough.’ A never-ending list of possibilities that taunt you by suggesting they might be just the thing your child needs to thrive.

But something changed, slowly and over many years. I brought myself up for air, out of the world of deficits and problems and interventions. Instead I asked, what if this is not a problem at all?

I grappled with the deeply uncomfortable truth that I had been scared of having a very disabled and dependent child. While I hadn’t been afraid of an autism diagnosis, I had been terrified of my son not growing up to be independent. But what exactly was so frightening about that? When I pinpointed those fears about my own sense of overwhelm, the energy it takes to provide care for him, the fear that I will not be enough, I understood the problem better.

The pressure I was putting on myself was a combination of societal expectations of what a ‘good enough’ parent does, as well as my own fears that I would be unable to sustain that indefinitely. But if I loosened my grip, let myself off the hook from being the hypervigilant therapist and took the time out I needed, perhaps sustaining it wouldn’t be so hard.

My son now attends an incredible specialist Autism Spectrum Disorder (ASD) school. I have a wonderful nanny a few days a week and the kids spend every other weekend with their father. I run, I read books, I see friends, I run a business, I go to therapy. I manage my household as a single parent with a whole lot of love and acceptance of my imperfections. My son uses the iPad a lot on weekends. We play his way and when he rejects me, I leave him alone. I lie by his side each night as he falls asleep (listening to an audio book) and don’t have any plans to stop this ‘habit.’ I take my daughter out for days out without him because it suits us all better. My life, with its myriad of compromises and imperfections is sustainable. It’s joyful this way.

In a meeting recently, a professional was running through some ideas with me on how to tackle a few of the current difficulties we are having. I felt my defences rising, that visceral, blood-pumping, palm sweating response I get when I know that I’m about to get a list of all the things I should be doing. The ever-present implication that I am the problem that needs fixing in order for my son to thrive. Instead she gave me another list. How loved he is, how playful he is, how affectionate and joyful he is. She told me, despite some of the hard things he is going through right now, she can see that he is in a family who loves and accepts him as he is. A family that has embraced his neurodiversity, not as a problem to be fixed but as a need to be supported. 

This is what ‘good enough’ looks like for me.

THIS PIECE WAS REVIEWED BY PENNY TAYLOR AND EDITED BY ANNA CEESAY and CLAIRE GILLESPIE.

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