Owen traveled to COLORADO by plane, and stayed just down the street from his brother Scott, sister in law Meg and baby niece Marlee. I was anxious about how disruptive the trip could be on Owen and Owen on the trip, but unlike the last time Owen went to Colorado, this time no police were called in to locate him.. He did not go for a solo tour of the Denver neighborhood. He seemed agreeable to the whole trip.
I know he liked our outing to Red Rocks—!
(Two determined men)
It was VERY fun to climb up — and slip over (!!) — and squelch through — and descend down the Red Rocks of Colorado — all the way down to the museum and amphitheater on the other side. Whew! What a memorable adventure.
But it was pretty nice to have Oskar climb back up and over and down and get the car, to pick us up! And take us home…
As far as I know, Owen never actually said “flugged in” meaning plugged in. But I can’t swear to it. With each of our kids a few baby words crept into the Simons family vocabulary and stuck there. Owee does turn his ps into fs sometimes — so we speak that way to him sometimes, when we are trying to communicate.
This is not something any speech therapist would recommend. For as long as I have known Owen, the therapists in his and our life have been insisting that we make him reach for it – ask him to use the right words and wait for them, give him heavy things to carry to increase his strength and balance, and so on. One excellent teacher made me aware that the things Owen wears and carries should be “age appropriate” too – at 15, his backpack really shouldn’t have a kiddie logo on it, she pointed out, and we might want to encourage him to carry more age appropriate toys. (What, not the legless baby doll??) So to speak to him in baby talk is certainly not good practice. I know this.
But…it’s warm. Words spoken that way come naturally, and seem to reach out tentatively across space to make a better connection in often unreceptive ground. Owen responds to those words. So I still say, “Flug it in, Owee!” without (mostly) thinking about it, when it’s time to buckle up in the car.
The first time I witnessed Owen flug in his own seat belt, I was amazed and delighted – so proud of him! I had absolutely no idea he could do that. To this day I have no idea who taught him or how they taught him to do it. I know I didn’t. I still get a jolt of pleasure every time Owen pulls that belt over and turns to attach it at his side. He may fumble to get the vertical piece aligned just so with the receptacle, twisting his torso, curling down. Sometimes he has to hold the receiving part UP while pushing connector DOWN, since the very effort at junction can push it away and down out of sight. But he can do that. It means pulling up with one hand while you are pushing down with the other – as with so many things we do daily, far more complicated series of movements than we ever notice. But he usually can do it, if I force myself to wait, and breathe deeply. Maybe assist, if he’s having a foggy day. That seat belt “click” it is a reminder that I still do not know everything about my son, that I don’t know everything he is or will be capable of doing.
Once a long while back, my Aunt Dorothy directed me to a book called Steps to Independence, a manual all about how to teach intellectually challenged people how to do things. The author suggested it was possible for people to achieve a lot more independence than anyone guessed if you analyzed the task to discover how many pieces it was composed of, and then taught those pieces, or steps, separately, one at a time. The book was full of charts and graphs to illustrate the basic premise. I admit to not being very excited by that manual at the time I first looked through it. No manual is very exciting reading to me. And at that time I still had a chip on my shoulder about being Owen’s teacher or trainer as well as his chief cook, laundress, and bottle washer. I was still resisting; I had not yet embraced my chaos. But still I found myself using what I read there. It heavily influenced the way I work with Owen, and I still have the book. One step at a time. One simple step, building on another. Obvious. Brilliant.
How many jobs today that we do for Owen could he have the satisfaction of doing for himself, not to mention the praise and appreciation for accomplishing, if we could slow down and teach them? But finding the time (and patience) to teach them, step by step, is more difficult than just doing them ourselves. Or so it seems.
When my brother Keith was a young guy struggling with a far lesser intellectual disability than Owen, I remember how hard it was for my father to let him mow the lawn. Keith was, among other things, directionally challenged. He couldn’t lay the mowed grass down the way that made sense to Dad – he just couldn’t seem to do the job the way my dad wanted it done. Too bad Dad didn’t have the book…
Similarly, it wasn’t until my father-in-law experienced health problems and became unable to stand for long, walk far, or carry weights, that there was a place in his life for his special needs son Chuck to carry his groceries, wash up his dishes, and stand at the grill and utterly kill the hamburgers. (Chuck was famous for overcooking hamburgers, which is a sin in my husband Edward’s family.) Like my own dad, Dad Simons had been a strong, active, and able-bodied man most of his life. It wasn’t easy or obvious to him how to incorporate his special needs person into it. But the accident that disabled Hil Simons opened doors for Chucker. I think there is a lesson for me there.
It’s wonderful to be needed. It’s also not a bad thing to slow your world down enough to need help. I could probably use that reminder every day.
It was a party weekend at the Simonses. Bronwyn brought her art school friends home for a festive summer-like evening Saturday, and Oskar’s soccer team celebrated their winning season on our patio the following night. All this is excellent inspiration for getting yard work done, and I drew Owen into the clean up process as much as possible. A guy with his fetish for picking bits should be a great candidate for weeding the patio, right? Maybe not – but the whole family threw themselves into preparation and he was part of it.
But once in the swing of the party, Owen tends to sink into the background. Edward and I begin to visit with the guests, and I tend to mentally disconnect from Owen. I generally hope he’s happy with a plate of food and a spot to sit. Meanwhile, all kinds of food that he shouldn’t eat are under his nose, and the older Owen is, the less he appreciates that. The most tempting objects in this weekend’s cornucopia of forbidden fruits were the one liter Coke bottles – though not for the reason you might suspect. Owen’s brother caught him making off down the hall with one four liter set earlier in the week — four liters of Coke, taped together, a special purchase from BJs warehouse, something his mom never buys. Naturally, it was the bottles he longed for, to heck with what was inside of them. During the party he managed to pour a literful of the nasty contents out into the washtub of ice where the drinks were picturesquely displayed (a la Pintrest), before he was caught by his sister. By the end of two parties-worth of being marginalized with a plate of food devoid of most of the fascinating new culinary arrivals and no cool bottles to boot, Owen had probably had enough.
Obviously he noticed all those extra plastic bottles and containers that found their way into the kitchen for two party evenings. Imagine his frustration, Monday morning early, to find that everything was cleaned up, spaces tidy, counters clean, and kitchen locked tight. It must have been about 6 am when he experienced that frustration.
Because sometime just after 6 am our telephone rang.
“Hullo?” I yawned into the phone.
“Hi this is Sharon,” said my neighbor’s terse voice. “Owen is out on the loose in the neighborhood, at Hyatt’s now.” She didn’t add til later that “mean old Mrs. Kunkle” had refused to share her trash cans with him already that morning.
I thanked her (at least, I hope I did), groggily yanked my bathrobe around me, and out into the steamy morning air I went. I noted the back door standing open, and the beautifully tidied patio beyond it empty (why, oh why hadn’t I left a bottle or two out there for him to find?!). And out front was Owen, in the street, hovering over our next door neighbor’s trash cans. I don’t know why he needed to look farther than our own driveway, since after two parties ours fairly bristled with cans and containers of all sizes and their riches. The other pasture is always greener I suppose. I growled, and Owen moved homeward, waddling to support the dangling nighttime undergarment. What a start to the day and the week.
In view of all this, it certainly behooves us to deadbolt all the doors, every night, if we can just train all the family members to do it. That works until Owen wants something on the other side enough to figure out how to open the deadbolts. What then, chains? What is the long term answer? Ask me in about 20 years, when I am that much wiser. One thing I do know: you don’t want to seem to care too much, or to turn it into a competition, because the tighter you squeeze the harder he will work to escape. Human things need to have freedom. When I think I am clever for inventing a way to control Owen, he tends to foil it. I guess that (and the expense) is why I haven’t yet invested in one of those wrist devices that Owen could wear 24/7 that would permit me to track him on my cell phone. I suspect he would hate it, and spend a lot of time trying to pry it off. We are lucky he’s not a “runner” – an individual who gets huge pleasure from suddenly charging forth into streets, down highways, or wherever, fearless. Terrifying. Owen only occasionally wanders.
But it would be smart to lay out some decoy objects, if I can just remember to do that. I listened to a very intelligent presentation once about designing houses and spaces to support those caring for their special needs children. This designer was an advocate for other ways of managing “runners” besides keeping them locked up, such as a motion sensor that turns on a sprinkler as you go through the door. If your child is very attracted to water, that sprinkler coming on will have great appeal, and lure them into the yard instead, away from the street for the few moments it takes for their parent to catch up.
There are special needs folks who run away, every chance they get. There are folks who stuff things into toilets and flush compulsively. There are folks who eat non-edible objects, like their mattresses. And there are the parents who love them, the neighbors who help to look out for them and love their parents, and the creative people who think outside the box about how to help it all work better.
And there is Owen, currently in training as connoisseur of recycling bins, specializing in educating his mom.