We think about my eldest son Jim’s happiness. A lot. What turns, straightaways, twists to take, what unexpected adventures there might be.
I get the same feeling this time of year when we drive out to the Rosthern Youth Farm corn maze on a Sunday afternoon. So much fun and so many possibilities. They give clues and you hunt for prizes.
Sometimes we hit a dead end. You never know what might be around the next corner. One time we even discovered an escaped pot bellied pig! Even so, there’s always the worry. What if we get lost along the way? What if we aren’t doing enough?
Happiness. Sure, I think about our youngest son Ben’s and daughter Erin’s well being, too. They’re all adults. Ben and Erin have their own spouses—Julia and Michael, respectively. Erin and Michael have a nine-year-old. So I think about the in-law kids, and grandson Alexander, too.
Our son Jim has Down syndrome. Helping him discover and nurture those things that will give him a rich batch of fun and adventure falls largely to us.
We take some paths. Many good. Others bottom out. Sometimes we get stuck. So the question of whether or not Jim is enjoying his life has set up full time residence in our heads.
Snuggled right up to that question are many others along the lines of “Are we helping him live a good life? What could we do better?” And every now and then, the old chestnut: “Why do we suck so bad as parents?” That doesn’t happen too often, but a tough one to chew on when it does.
Jim is 41. Green eyes. Killer smile. Blonde hair that now gets buzzed down by Aziz at JR’s Barbershop. Jim likes his hair “prickly.” He’s got a sly, dry sense of humour, but also loves good slapstick.
He used to talk to the point where we’d beg him to give us a break, but as he’s gotten older, he’s become more stoic and quiet. He wears two hearing aids and his right ear is pretty well shot, so speech is difficult. He just won’t if he doesn’t have to, or if he’s not motivated. However, “May I have a glass of chardonnay, please?” seems to come out very clearly at The Yard and Flagon pub.
Jim is a veteran volunteer at the Saskatoon YMCA; he’s been working in the laundry and maintaining the pool deck for 20 years now. It’s his solid base. We help staff tweak Jim’s routine now and then if things get a little stale, or if new staff need a little orientation on how best to work with Jim.
One of his coworkers, Heather, is a faithful advocate, always quick to get in touch when things are going well for Jim and on the days where he’s feeling a bit off. Since Jim was little, he’s always loved basketball (probably a genetic condition due to his birth in Indiana). Heather convinces Jim a few times a week to shoot some hoops with her in the Y gym so they both get a little fun break from the routine.
But while Jim has a solid job, which he looks forward to and enjoys most days, that’s just the baseline. We know it’s up to us to help Jim discover interesting, fun and enriching experiences. The colourful, spicy parts of life. It’s an ongoing pursuit. And that pursuit doesn’t lend itself to nice neatly defined goals.
Jim used to love drumming. When the theme music to Star Trek would come on, he’d leap up, race to his room for his snare drum, roar back to the TV room and pound out the beat. He loved Star Trek, too. These days, not so much. He’ll say, “Did that already” and that heralds the passing of the interest.
At first we fretted about that. But how many of us are still enraptured by the fascinations we had as prepubescents? (Not counting my lifetime commitment to Bobby Sherman, obviously.)
We try to help Jim make his own choices (tough when he’s pretty silent) while encouraging and, yes, sometimes insisting that he try something or participate when we are pretty sure he’ll enjoy it. Pitch in to volunteer at the community garden. Volunteer with us at the Friendship Inn. Usher at church with Dad. Write a “feel better” note to an old family friend in hospital. Let’s try watercolour painting. Ask a friend’s son to play badminton.
Jim’s got a few other things on the go. We travel a lot. When we’re home, Jim has enjoyed a lot of matches made through the University’s Best Buddies chapter; some good, some really great.
For several years, we hired a young man to meet up with Jim two or three times a month to do “guy stuff” like gokarting, shooting pool, going to the pub, trying a new restaurant. Jim helped Ryan out with home projects, volunteer jobs, and a drama group for at-risk adolescents.
Ryan and Jim often took Ryan’s toddler son Jack to the biology museum or for ice cream. But the relationship slowly petered out as Ryan’s own young family grew. We miss that one; Jack always looked forward to seeing “Uncle Jim.” It doesn’t mean it failed, but we have to try another path.
An important piece in this pursuit of happiness is finding other people. While we fret over the new things Jim might find joy in, we remind ourselves to relax and celebrate the good connections he does have.
We’re lucky to be in a position where I work at home so can be the one to take Jim to work, pick him up, go to appointments. Rick recently retired from the University, though he’s still teaching some.
We’re reinventing our roles with Jim. Not everyone can do that. We’re the conductors, but we don’t want to be “everything” in Jim’s orchestra. He needs other people who like him, people he will feel connected to and comfortable with. What we’re really after is to add a few more fun people to his life. It’s the tricky part. And we have to get past the fear of rejection if we ask and someone says no.
Back to that corn maze. If you’ve ever done one, you’ll recognize the journey. I think the trick is to keep looking around the next corner. We expose our children to things we think might spark even a tiny glimmer of interest and see where it goes.
If I can throw in another metaphor, Jim’s life is like a patchwork quilt in progress. A piece of this, a little of that, stitch that together here, this piece works with that but not with this one. We try to set aside the panic and frustration that it’s not all coming together fast (or even slowly!) and just try to enjoy the adventure.
Every couple of months, we email a little update about Jim to Jim’s siblings and nephew in California, and far-flung friends and family all over the world. Collecting a few photos and describing what Jim’s been up lately helps us have a good look at his life on a regular basis. Not only does it maintain Jim’s connection to a wide network of people, as we sort through photos and decide what to send, we’re reminded of what he really enjoys doing, what worked out, what we can build on.
Part of Jim's future happiness depends on what we do now to build those connections for him. There will come a day when one or both of us won't be around. We've written wills, designed a trust, established an RDSP. We've had many wonderful discussions with Jim's brother and sister, who both say they “have Jim's back.” They understand what a good life looks like for Jim and because they're an ongoing part of it (even though they live far away), we hope the transition won't be too gut-wrenching. Different, obviously, but a good life will go on for Jim with Ben, Erin and their families taking over. Their networks of friends know Jim, so those connections have already begun.
Or we light the chimenea and ruin some marshmallows. We laugh. A lot. I probably suck at being Jim’s stepmom a lot of the time. But when he’s making a joke during Go Fish, or gives me a big smooch while my marshmallow goes up in flames, I think he feels his life is pretty okay.
And who knows? The more things we try, the better the chance of having an interesting, joyful life. Maybe we’ll even find another potbellied pig!
Karin Melberg Schwier is the author of several books. Her most recent is Flourish: People with Disabilities Living Life with Passion, available in Holland Bloorview's library. She co-authored Sexuality: Your Sons and Daughters with Intellectual Disabilities with Dave Hingsburger, and it's been translated into German, Italian and Korean. She also co-authored Breaking Bread, Nourishing Connections: Mealtimes for People with and without Disabilities with Erin Schwier Stewart. Click on her byline at the top to visit her website and find out about purchasing the latter two books. Photo by Richard Schwier.