Lots of amazing things happen in my son's life, things that fill my heart with gratitude. But too often those memories get lost amid the challenges and worries of raising an adult son with disabilities.
Now I'm going to write those great things down, and put them in a glass jar, so I don't forget them.
The idea came from Sazini Nzula, a Montreal mother of two boys with autism and the author of Beautiful Inside and Out: What You Ought to Know About Autism. I interviewed her a couple of weeks ago.
Sazini told me about the 'jars of awesome' she keeps for her sons. They decorate two large glass jars. Then when her kids do something wonderful or have a great experience, she writes it down on a piece of sticky paper and puts the paper in the jar. She writes something each evening and watches the jars fill up. "My plan is that if we go through a really challenging time during the year, I will pull them out to read," Sazini says. "And certainly at the end of the year, we will read them to remember what happened."
Here are two memories for my son's jar.
A week ago, my son's worker sent me the photo above. My son volunteers twice a week by cleaning at Variety Village. He also takes personal training with a coach there. The personal training helps keep him fit at a time when he's coping with a severely curved spine.
"I went to go get Ben for lunch and I found him walking on the treadmill," the worker wrote. "He was increasing the speed by himself. I snapped a pic before he realized I was there."
You'll notice that he set his broom and dustpan beside the treadmill.
What was amazing was that Ben decided to get on the treadmill and exercise himself. Usually he has a personal trainer with him. Due to his physical disability he has issues with balance and coordination, so the trainer usually starts the treadmill and changes the speed.
"On our way to lunch, he stopped at a couple of machines and did some arm workouts," his worker wrote. Again, he's used to doing the machines with his trainer, but now he felt comfortable enough to do them himself.
Working out on his own is the first note that will go in my jar.
The second note is about when Ben took his speech app on an iPad with him to a L'Arche arts program he attends.
Ben has always resisted using his speech app. However, in the last few weeks he started using it to tell me which animal he wanted to paint. As a result of attending the arts program at L'Arche, Ben now enjoys drawing animals and then painting them. What's interesting is that because of the speech app, Ben can more easily tell me which animals he wants, and they are always somewhat unusual ones. He'll choose the Gibbon ape, or an opossum or a camel.
Last week Ben agreed to take the speech app to L'Arche, but I was doubtful he would use it.
When my husband picked him up, the teachers were excited to say that Ben had used the app to suggest the group draw a scorpion. And then Ben drew a really cool one. Because he doesn't have a signing worker with him in this program, he's had limited ability to express himself, and people probably don't have a sense of who he is inside. Choosing the scorpion was something very specific and personal.
So those two happenings are the first I'll be dropping in my jar of awesome. They may be small things to other people, but to us they are huge.
Let me know if you decide to create your own jar.
2 comments:
I was grinning ear to ear reading this Louise! Go Ben!
I love this. Your son sounds great. I can imagine how you felt.
I also just found out from you I could get my kiddo a personal trainer at VV - never thought of that before!!! So thank you!
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