Hope and Joy: Choosing Our Story

Hope is being able to see that there is light despite all of the darkness.
Desmond Tutu

Lately there has been a lot of online discussion about the challenges of parenting children with autism, and responses that raise concerns about the damage that can be done by parents who publicly focus on the struggle they have with their child.

The challenges are real.  For many people, parenting is not what they thought it would be, and children with autism can be hard to understand and support without help. There can be a huge gap between what we are ready for, and what our children need from us to thrive.  It takes time and resources (more or less, depending on your starting point) for parents to feel comfortable and competent.  A disconnect between experience and need creates a lot of stress.

On the other hand, disability advocates point out how destructive these messages of challenge and struggle can be to the emotional well-being of children (and adults) with autism.  They are a snapshot of a person’s thoughts in one moment in time, but when recorded in a book or video or blog post, they present a picture of what things “really are.”  A moment of distress can be seen as a permanent reality.  If we want to create a world that appreciates and welcomes people with autism, stories like these don’t help.  They draw attention to the hard moments, without showing growth and success – which are just as real.

These thoughts ran through my head as I watched a video on Youtube recently.  It was a  tearful mother expressing her distress and anxiety, and her worry for the future of her child. It made me very uncomfortable, and also concerned for this family and for others who don’t see a way to the happy family life they expected. Is it fair to comment when people are struggling? I thought, my family’s situation isn’t that bad…

And yet – if I chose, I could tell quite a story. Two kids with autism. Struggles with the education system. Delayed development, and all kinds of things that come with that. Delayed speech and continuing challenges in communication. Wondering about how we should prepare for our children’s future. And one child with a cancer diagnosis, with ongoing implications.

I don’t usually talk about that perspective, though.

Reading the thoughts of people with autism and their allies is one thing that stopped me. Writers like Stephen Shore, Jess Wilson, Shelley Moore, Jean Vanier and many others made me very aware that my children’s dignity has to be respected. They are human beings with all the feelings and desires and joys and frustrations that every child experiences. They have a future in which they will have grown and changed.  I have to be careful how a I see them, and how I present them to the world.

Dwelling on the challenging side of our story is also exhausting.

A turning point for me was a “small victories” journal. The idea offered by our RDI therapist was to look every day for little things that showed growth – in my children or in me, and to write them down. This meant that I was focused on successes and happy moments, and it also provided a way to look back and see the changes that were occurring slowly, but which built into bigger changes and capabilities. I didn’t keep up the writing habit any longer than a few months, but the habit permanently changed what I noticed.

The other thing that really, really helped me is a circle of friends who love who our kids are, and who look for the joyful moments along with us.  Some are from our family, some from school and church, and some are from other families and friends in the autism and disability community.  These people are amazing.  We couldn’t have thrived like we are without them.

The choice to see the joy, and to share it with our friends, completely changes our family story.

We are a family that celebrates growth. First words, first conversations, playing together…first “I love you.” Learning to draw or type our thoughts. New friends, birthday invitations, telling knock-knock jokes (and understanding them!). Magic School bus trivia, a teacher excited about what was written on a science test, first time singing in concert or playing the drums in band. A girl making pancakes for her dad. Making new friends at book club. Remembering our summer trip to Drumheller and the fun we had together. Healing from cancer, and the growth of our circle of friends and encouragers…that’s our story.

Joy what I want people to see, and that’s what strengthens us. That’s what shows the world that our kids are valuable and funny and capable and loving and smart, and so worth getting to know.

The other stuff is still there. I have to deal with it. But it’s in the background, not the foreground. I wouldn’t be able to cope if the challenges were the centre of what I think about.

For moms who are at the end of their rope and are looking for support in the public sphere, I hope they can find what they need.  It can be hard to find, but there are people who can help – both professionals and ordinary people right in your community.  Everyone can grow into the life they have been given – we don’t have to stay where we are right now.  But it’s hard to shift your view without a circle of support.

Do you want to shift your vision? Try keeping a small victories journal. And look for friends who are willing to see how small steps might turn into big ones, who can see the joy in everyday moments, and who love you and your kids for who you are.

Further Reading:

The Stories We Don’t Tell: My Mom on Raising an Autistic Child and the Stories She Won’t Tell About Me

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