“You’re sorry-grateful,
Why look for answers
where none occur.”

–Steven Sondheim

There’s something unfolding and I’m so ambivalent about it that I don’t even know how to start this post. That happens sometimes when I try to write about tricky feelings. Usually the act of writing provides a clear point of view, enough that I can scroll back up and re-write a couple of sense-making introductory sentences. If you’re reading this, it’s safe to assume that my ambivalence remains.

Two-plus years into life in Sweden and we are tapping into a service that didn’t exist for our son, with his complex developmental disabilities, in the US. It’s affectionately known in Swedish as kortis, which loosely translates as shorty, and is literally short for korttidsboende (short-term residence).

Kortis offers kids with significant cognitive, behavioral or physical disabilities a place to spend some time away from home, usually a weekend a month, a week or two during the summer, and sometimes one or more nights during the week depending on the person’s needs and family situation.

It’s good for a bunch of reasons. Social workers refer to this service as respite, which is so uncommon in the US that if you’re like me, you may need help figuring out how to pronounce it. (It’s RESS-pit.) For us, that means the chance to sleep in, move more slowly, finish a thought, grab a daytime movie, to catch up on home improvement projects, and spend some uninterrupted time with our daughter. (Yes, I’ve been daydreaming.)

The benefits for our son are many; he doesn’t normally get sleep-overs or sleep-away camp, but suddenly he’ll have weekends filled with outings, movie nights, good food and time away from his sometimes over-protective, boring and/or exhausted parents. He’ll get the chance to practice skills that he’ll need when it comes time to move away from home, too. Most importantly, it’s a stimulating change of scene for a kid whos world could stand to be a bit bigger.

And in our new life, kortis is available to us, close to home, with plenty of qualified staff. And it’s free.

Even so, there’s a lot I don’t feel good about. For starters, there’s the terror of letting my more-vulnerable-than-average kid spend a prolonged amount of time with adults who aren’t family. Do I need to get into the depths of that terror? Compound it with how easy it is to feel like a failure as a parent when you finally admit that in order to get your family life to work, one of your kids will spend time away from home.

But after two years of telling the agency powers that be, “thanks but no thanks,” we finally have to admit that our son has needs that we can’t meet. We’re resolved to make it work.

It’s been several months of slow transition: first our tour of the kortis house, then a meeting with the in-take coordinator. Then our son had dinner at the house (once with us tagging along, then once without us), and a first attempt at a sleep-over that ended with a call home at 11:30pm when our son was too excited to fall asleep. Tonight my husband is camping out with him at the house, in an attempt to get him through the night. Several more baby-steps may be needed until he adjusts. Until we do too.

Deep down, I know that it will be great for all of us. But for now, I’m sorry-grateful, regretful-happy. That kortis is an option for us. And that we need it.

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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  1. We have respite homes in Ontario, Canada, and when I first discovered that there was such a thing, I had to wrap my head around it too. It was relatively low cost, and i could use my “respite funding” that I received from the government (before Jeremy turned 18). In the end, though, I didn’t really take advantage of the program. Jeremy tried it a couple of times, and he didn’t really like it. For us it was one of those situations where Jeremy’s needs and interests didn’t really mesh with what was on offer. I preferred to spend those “respite” dollars on support for Jeremy going swimming or on another outing or activity (e.g. summer camp) that suited his own interests. I hope this one works out for you. Ultimately the more people in your son’s life who understand him and can meet his needs the better! Then you can truly have “respite,” knowing that he’s having a good time, tasting a little independence, while you sleep in, or not. Good luck!

    1. Yes, it definitely often matters what specific problems are available in reality, not just in theory. We seem to have lucked out. Fingers crossed! The group he’ll be with includes a young man who shares his passion for trains and other vehicles. They have already hit it off and I hope we transition eventually so he can really enjoy it.

  2. Eloquently stated. Sorry – grateful, regretful – happy totally sums it up. I wish such a thing would have been available here when Carly was younger. Hard as it is to take that step, though, your family — including and maybe especially Gabe — will be better for the experience. We have been so fortunate to have a young woman in our town who has made working with our kids her career. We have $ in Carly’s budget for 2 weeks’ worth of respite/year, and we do use it. Carly stays with her. And a friend who is a travel agent, who has a son with Down’s Syndrome, has started a sideline travel business taking young adults with special needs on trips. She staffs the trips with skilled caregivers and they do several “Skedaddles” each year. We usually try to get away ourselves then. Having that break is good for everybody, especially me.

    1. Love the Skedaddle idea; Jeremy loves to travel, and it’s always about the journey, not the destination. This is something I am thinking about for his adult life…I hope to find like-minded travellers who enjoy trains, buses, planes, boats, subways… as much as Jeremy.

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