My daughter Shawna is severely autistic.
Her story is really about the people around her. What we’ve all learned from Shawna and what we can pass on. I finally have a contented child and that hasn’t come easily or without a lot of help from a lot of people.
I think that the starting point for Shawna had more to do about goals than anything.
Setting goals is hard. Whether it’s for ourselves or others or especially for an autistic child. It’s like there’s a set of standard goals and you have to pick one. But the goal you choose may be the wrong one if you really stop to think about it. And setting goals for someone else is even worse. Trying to force your idea of what someone else can be or what you want them to be. How do you set goals when you have no idea what someone wants or might be able to do?
I just wanted Shawna to find peace. She didn’t have to break any records or stand on any podiums or get a promotion. I thought that if she could just feel good about what the next moment would bring, that would be enough.
Shawna and I have had so much help and so much kindness. But at the start, people all had their own goals for Shawna, depending on what they did or what they knew … what their job was.
Everything changed when I found my goal for Shawna in my heart. I wanted her to have peace. To let one moment flow into the next on her time and in her way. And I said so.
It wasn’t about getting better and improvements that we could measure and congratulate ourselves on. It was about her being content and I’m so grateful to the people at WJS Canada who worked so hard to make such a modest goal real.
I think of Louise Courville as Shawna’s ‘team leader.’ The one who made countless two-hour round trips in any weather and for seven years. Thanks to Louise, Shawna has succeeded on many levels that may not seem like much. She allows having her toenails cut, for one. She enjoys long car rides without slapping her hands on the window. Or short rides where she can get out of the car, confident that she’ll be allowed back and the ride will go on.
Shawna is not taking any sedation. She is simply Shawna and wonderfully her own and not some person on chemicals.
This comes from infinite patience. We rejoice in and appreciate what she is able to do.
Before Louise came into our lives, Shawna slept hunched over in a rocking chair. It took a toll on her back, but now she sleeps lying down.
Shawna has traded twirling her clothing for crafts, and I include picking up scraps and putting them in the garbage as a craft. She’s particular about fashion, preferring simple tops and pants in navy and cotton, for which I’m grateful!
Shawna loves music and lakeside visits with the sounds of nature. She arranges things in her own way and to her own liking. It’s best not to have an opinion of your own, unless she is in harms way.
Shawna is in her own home and when I come to visit it’s a mother-daughter time with no house rules. Shawna is proud of her place. She has and needs support, but to her those around her are friends.
Success, like Autism, comes in varying degrees.
She can’t speak, but I can read Shawna’s success in her body language. In her happiness and peacefulness.
Which was the goal, after all.
Shawna and I will be forever grateful to Louise for her daily care and to Lucille and Pat for their expertise in buying Shauna her home.