Cecily Paterson wrote an award-winning tell-all memoir about her experiences raising an autistic child seven years ago. Today, she realises she was only telling part of the story.
Seven years ago, I wrote a book, Love Tears & Autism, about my then seven-year-old son, and how we faced his early years of life with autistic spectrum disorder.
I won’t lie: it was a tough ride. Every day there were meltdowns. Most days there were times when I laid my head down on my kitchen bench, wondering if I could get through the next half hour. Some days, there were small pockets of hope and even happiness, but the vast majority of life was just hard going.
I didn’t leave anything out of the book. I was brutally honest about myself, my hopes, my fears and my failings. I included my own meltdowns, including crying all over the GP. Yeah. Embarrassing.
And then, once I’d written it, I was terrified of publishing: What would people think? Would they look down on me for not being that “victorious”, thankful, courageous Christian person?
I had read happy, shiny, “Thank you, God, for adversity” stories about autism in the months around my son’s diagnosis and quite frankly, they didn’t cut it. Honestly, I felt like hitting the authors in the face. I was struggling, out of my depth, desperate for anything, or anyone, that could give me a tiny sliver of hope. I certainly wasn’t thankful for suffering, heartache and sheer, unadulterated exhaustion.
What’s the point of writing that stuff if it’s not actually true? I asked myself. I want to read what people really think—how they really feel when they go through something that’s so hard they think it might break them.
So I didn’t hold back. Seven years later, I still have people write to me and say thank you.
“I read your book,” they tell me, “and I am so thankful that you were so honest. It makes me feel like I’m not the only one who’s struggling.”
But seven years later, I’m beginning to see that all of that is still only one part of the whole story.
Then, I was the mother to a gorgeous, challenging kid, who I never thought would even manage life enough to get to school. Now, I’m the mother to a gorgeous, challenging teenager who not only somehow got to school, but goes mainstream and is heading into Year 9. He also has some friends. And for those of you with a child living with autism, you’ll know what kind of jubilant expression is on my face as I type the word friends.
Seven years later, I’m a person with about 300 per cent more patience than when I started this journey. I can absorb all sorts of aggro and still stay calm. I’m far from perfect, especially as a parent, but I’m happy to say I’m kinder and far more understanding.
I had a conversation with a new acquaintance just this week who said, with delightful sincerity and enthusiasm, “Wow, I mean, you must be thankful for that whole experience, right? It would have taught you so much.”
I didn’t hit her. I didn’t even feel like hitting her. Seven years ago, I would have been unbelievably upset if someone had said that to me. The grief and the trauma were still too close and too raw. Life was still too hard. Then, I needed people to say, “Wow, this is tough for you.” But now, seven years later, I smiled and said, “You’re absolutely right. I am thankful.” And I meant it.
Let’s be clear. All these smiles are not just because my son has somehow miraculously “grown out” of the behaviours associated with autism that still make his—and my—life so very challenging. The flexibility he has gained, the relational skills he has learned and the self-calming he has developed are all the result of hard work, lots of prayer and quite a bit of money. We’ve done therapy, driven hours to see professionals and gone step-by-tiny-step with patience, perseverance and dedication to get this kid to where he is today.
When people write to me and share how their child has just been diagnosed, or is struggling with anxiety, meltdowns, violence, school refusal or whatever, I always suggest they take a holistic approach. Get into the right therapy, work hard on diet and supplements and, just as importantly, try to adjust your own mindset as a parent. One of the most helpful things we heard when we were starting out was this: “It’s a marathon, not a sprint.” It was hard for an impatient, quick-to-do-everything kind of person like me to hear it, but over the years, I have come to love perseverance and endurance and the slow, but golden rewards they eventually bring.
My book hasn’t lost its relevance: parents all over Australia and the world are coming to terms with diagnoses of autistic spectrum disorder in their children in ever-increasing numbers and for many of us, this means grief and challenge. Mostly, we hate to see our children suffering with meltdowns, high anxiety, gut problems, and learning and communication difficulties.
However, Love Tears & Autism told just one part of our story. These last seven years have been another part, and there will be more to come, each different from the last.
What will the future bring? I don’t know. What I do know, however, is that there is a way out of crisis, grief and trauma. There is a path that leads to being able to say, “Hey, yeah, I’m thankful for that,” without even a flicker of resentment and bitterness.
And I’m thankful for that.
After an autism diagnosis
- Check out diet and gut health and their effect on neurological function. Our son follows a gluten-, soy- and casein-free diet, and the vitamin supplements our doctor has put him on were able to help him cope enough to get off the heavy medication he had been on. See more at www.mindd.org.
- Check out auditory processing disorder. This is fairly simply treated with sound therapy and has made a huge difference to us.
- The best therapy I know of, and thoroughly recommend, is the Relationship Development Intervention (RDI) program, which is based on researched principles of childhood development and works with parents to help redevelop that all important guide-apprentice relationship that’s so crucial for every child’s growth. www.rdiconsultantsaustralia.com.au.
- The Explosive Child, a book by Dr Ross Greene, changed our lives. With a kid who melted down at almost every moment, this helped us to stop worrying about things that really aren’t that important and focus on how to get us all into a calm place where learning was actually possible. www.livesinthebalance.org.
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