Today we start a series aimed at building your parent coping toolbox, because we know you can’t have too many tools when it comes to the ongoing challenges that autism presents.
We’ll discuss finding meaning in challenges, using humor and humility in the midst of adversity, reframing challenges, surrender, grace, intelligence, courage, patience, and support – and perhaps a few more.
We also invite you to share the tools that work for you. At the end of the series, we hope we all have some new tools at the ready for whatever life hands us.
I’ll start us off with finding meaning in adversity. Keep in mind, this series will be written from each parent-author’s personal perspective and is not intended to reflect or represent any more than just that.
Life isn’t fair!
When bad things happen to us, we have a tendency to feel singled out and a sense of injustice surfaces. “Why me?” or “Why do bad things happen to good people?” we ask, and wonder what we did to deserve such hard luck or bad karma. Even smart people let superstition creep in when trying to make sense of difficulties. It’s curious that our brains don’t seem to put as much effort into wondering why good things happen when they do.
Some call it making lemonade out of lemons or finding the silver lining. Whatever you call it, we do know that whatever the difficulty, being able to find meaning in life’s challenges can help make them a bit easier to deal with, particularly with those things we cannot change.
Ironic, isn’t it?
My family’s story of autism had quite the twist of fate. It was 1981 when I moved to Colorado with a shiny new degree in hand, eager to save the world. I thought I wanted to work with kids.
There were just two problems with this plan: unemployment was sky high and it seemed everyone and their grandmother had a PhD plus twenty years experience. This meant I had three part time jobs, none of them with children. In one, I interviewed clients for a video dating club – and that is quite another story!
In another, I was a counselor in a new group home for young adults with autism. A forward-thinking mom of a teen bought a rambling house in the foothills and got it licensed. Six clients ranging in age from 20-40 moved in and we provided 24-7 care for them.
In college I had observed a classroom of children with special needs, including autism. It was fascinating for me to observe the same behavioral traits in adults that I’d seen in the young kids. I recall being perplexed by what, at the time, I’d heard about the cause of autism – these were children of supposed “refrigerator mothers”. This was a time when the “nurture” part of the “nature vs. nurture” debate was given greater weight. Genetics was years away from taking center stage.
As interesting as it was, this was not an easy job. We didn’t get much training in autism or how to handle behavioral challenges, which meant we did a lot of improvising and sometimes got hurt. I was a shy young twenty-something with little experience. Keep in mind, there was no early intervention at that time. These kids didn’t even have the right to go to school and their parents were told at diagnosis to place them in an institution. This is primarily where our clients came from. I left that job thinking very decidedly that this was too hard and that
Autism is not my life’s work
Fast-forward to 1999, when my nephew was born with Down syndrome. My sister didn’t know prior to his birth so it was a surprise and an adjustment. Well-meaning people gave her lots of unsolicited advice including this from a friend who is a teacher’s aide:
Just be glad it isn’t autism
It was right about this time that I could no longer ignore the subtle but growing red flags that I was seeing in my baby girl. She stopped responding to her name. She stopped playing with toys and instead repetitively tapped kitchen utensils on the floor. I was hesitant to share this with my family. It almost seemed as if I was trying to one-up my sister. And those words kept reverberating in my head: Just be glad it isn’t autism. Autism is not my life’s work.
Well, as they say, you know the rest of the story. She was diagnosed that summer and it was devastating for us.
Finding meaning didn’t happen overnight. It also didn’t happen without effort. It was a conscious choice to move from the place where it was hard for me to share the simple joys of friends who seemed to have so much to celebrate, while we seemed to be hanging on by a thread. There were days when I’d look at people and wonder how they could smile and what they could possibly be happy about. Like a message in a bottle washing ashore from a troubled sea, I realized that staying stuck in strong emotions wasn’t going to help her or me. New thoughts popped up:
Why not me?
I have what it takes.
I can do this.
How did I find meaning? The easy answer is through curiosity. I began asking myself questions about how and why I arrived at this point in my life. After some uncertainty in young adulthood, wondering what my purpose on the planet was, I felt certain that I wanted to be a mom and work in a helping profession. It would take many years before I would see how these two goals would dovetail. These are some of the questions I asked myself:
What skills do I have that I bring to this challenge?
What other challenges have I handled well?
Who can I learn from in the areas where I feel unsure of myself?
I looked for parents who were one step ahead of me and gleaned what I could from them. After getting some experience under my belt, I began to volunteer as a mentor for parents new to the diagnosis and signed up for other parent projects. I soon realized that helping others helped me.
As they (once again) say, you know the rest of this story. For nine years now, I’ve had the honor of working alongside the best here at Seattle Children’s Autism Center, doing what we can to make life a bit easier for families. And for at least that long, I have known what my purpose on this planet is:
Be the best mom I can be
Help others
Not so shiny tools
“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up, I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.”
Anne Lamott, Traveling Mercies: Some Thoughts on Faith
Have you found meaning in your challenges? Share your story with us!
Stay tuned for Part 2 of our series on parent coping tools.
Your post got me thinking about the question: If there was a pill that could cure autism, would you give it to your child? I think I wouldn’t. The hard times with my son are terrible, but his autism is part of what makes him who he is. There are some great things we’d miss out on; namely HIM.
Dear Patty,
Thanks for the thought-provoking question. I’ve had this discussion with many parents over the years. I sometimes hear parents new to the diagnosis say that they can accept that their child has autism, if they can only get him to talk and stop the repetitive behavior. Parents of older kids have the benefit of time and perspective and often speak of the positives of autism such as, “my child doesn’t know greed or envy or materialism” or “my child doesn’t care what people think of him” and “ what you see is what you get”.
Perhaps what we’re talking about is acceptance and unconditional love. Both of my kids have their strengths and frailties, as we all do, and I love them unconditionally. If my child didn’t have autism, she might have different strengths and frailties but she’d still have them. She’s human. And where do the boundaries of “autism” begin and end? Each child’s “autism” is unique. As parents we’d like to take away what causes them pain or discomfort not what makes them uniquely them.
I’ve said that her autism is easy – meaning her social aloofness, her strong preference for sameness, her loveable quirky mannerisms and habits. It’s the chronic GI distress and sleep disturbance and other physical issues that cause her great discomfort that I’d take away if I could. Parent of kids with severe aggressive or self-injurious behavior would take that away. Developing and using coping skills allows us to continue to be strong and creative in supporting our kids to be happy and healthy. This applies to all parents and all kids, as parenting is not easy. As with all things in life, there are ups and downs, joys and challenges.
Bottom line is we love our kids for who they are, uniquely imperfect beings, just like the rest of us.