A letter from a tired parent
Have you ever stopped to count the number of breaths you take in a day? I don’t mean every breath, but the moments where you get to just stop and breathe? Like when you’re enjoying your morning coffee, or scrolling through your phone, or just relaxing with a book or TV show at the end of the day?
Not only do I not get these moments to breathe, most days I feel like I am completely out of air.
My name is Fee Johnson and I’m a mother of three autistic boys: River (7), Bodhi (9), and Indy (5).
If I could ask for one gift this holiday season, it would be to have a break.
While I know that COVID has been tough on everyone, it ’s really hit our family hard.
Usually, the boys are in school or in therapy. But now, we’re homeschooling and the therapists aren’t comfortable coming over. So I’m dealing with homeschooling and trying to get the boys to do their individual therapies and by the time they’re in bed, I’m only just starting to do all of the other things I didn’t get done during the day.
I try to be in bed by 1am and then four hours later, I’m up and starting the exhausting cycle again. Our middle son River gets up at 5am which is especially hard because he’s a flight risk. We have locks on all the doors and alarms in case he bolts. So the daily challenges really start the moment we get up. Then having the boys inside all day with nowhere to run just makes things harder. They have all this energy and no way to get it out.
Even at their ages, not all of our boys can get dressed on their own. They can’t all brush their teeth. Some are really picky eaters. So it’s hard. It’s hard with food. It’s hard with hygiene. It’s hard educating.
Every little bit is a struggle.
Kids with autism don’t like transitions so trying to prepare all three for what’s to come at the same time is really hard. Autism is a spectrum so each one of our boys has their own challenges and quirks.
Before our family heard about Canucks Autism Network (CAN), the boys were never included in sports. We tried sports and even when other groups claimed to be inclusive, they weren’t. When we found CAN, the boys finally got to try sports without judgment. And we as parents finally had the confidence to step back and trust the CAN staff who just let our kids be kids. It was the first time we had a break.
Before CAN’s Swim program, we couldn’t even wash River’s hair. He would scream to the point of building up a sweat or spiraling into a meltdown. After just two sessions at CAN Swim, he was willing to pour water over his head! Now he loves baths. I still can’t believe that we can scrub him head to toe.
It gives me great joy to see them interact with the other kids and the staff they’ve gotten to know and trust over the years.
And it gives me a break, which is awesome because I wouldn’t get one otherwise.
While many of CAN’s usual programs aren’t running right now, they have really come through for us during COVID. We’ve enrolled the boys in all of these online programs that CAN introduced. I always know when it’s 1pm because the kids all run over to the laptop to get ready to do their CAN activities.
Without these programs, the boys wouldn’t get the exercise or mental stimulation that they need. Before CAN, we felt so alone and frustrated. Now we get to finally feel like a normal family.
I didn’t think that was possible.
When COVID hit, I started to think about life without CAN. It made me really sad because there’s nobody else who does what they do. CAN is truly a miracle for families with autism.
So thanks to everyone who has supported CAN and helped them survive through this terrible time. Because we need CAN. We need them even more than we did before and I don’t know what we’d do without them.
Fee Johnson, Proud CAN Mom
Since launching its new stream of virtual programming, CAN has filled 1,000 program spaces.
Would you consider making a gift to support kids like River, Bodhi and Indy?