Lines, Lines, Lines

Last week Cindy http://adventureswithbeth.blogspot.ca/2012/11/what-would-you-have-done.html  wrote about whether we keep teaching, instructing, deciding for our sons and daughters (with intellectual disabilities) for the rest of their lives … or how and when we let them make their own choices, poor ones included. That is what I find to be the absolute hardest part about parenting through transition into adulthood and it is so good to hear what other parents do. I love that Joyce gives choice within limits that leaves Sarah in charge, but not in jeopardy. That Cindy wonders, as I do, what exactly you are to do when you know your son or daughter can’t see the consequences of their choices, and those consequences loom large over health, quality of life, and relationship. This is my take (today) on some of those issues.   

This period of parenting or mentoring into adulthood seems to me to be all about lines: drawing the line, crossing the line, walking the line, toeing the line, hanging it all out on the line! Just one big etch-a-sketch mess of lines that we often need to be able to erase just by shaking all our lives and starting over.

And we seem to do that every week—redraw the lines on the map of independence. Yup, she’s ready for that and oh boy, she is so NOT ready for that, and man oh man was that a mistake, and wow, I never would have thought she could handle that, and oops, but what a great learning experience. There is so much growth happening at times (as she pulls a speech together at the last possible minute and delivers it with perfect timing, or wakes up early to have a shower, make a healthy breakfast, and pack a healthy lunch completely independently AND gets out the door on time, properly dressed for the weather and with her bus pass) and then you turn around for a split second and it’s a room full of dirty laundry, no dance clothes to be had, sleeping in past the alarm, and eating 3 cookies for breakfast (but they have oatmeal!) as she rushes out the door in the middle of a rainstorm without a raincoat.

Planning detritus 

We continually bounce around between WHEN will she learn? HOW can we best help her learn?, and WILL she actually ever learn? And there are so many gray areas that are unknowns. So Dan and I spend Saturday mornings—after dropping Jessie and the perennially good-natured Jason the drummer off to help lead the children’s dance class—at a cheap dinner eating eggs over easy with bacon and homefries, and drawing out the lines of support, direction, and danger.

Without going into the food issue (that’s a whole other realm), we have slowly, over the past year, developed a strategy that is not a solution, but certainly a way to go forward.

When Jessie was younger, we built scaffolding and relationships around Jessie to make her pursuit of her dreams and passions in community possible. Then, as she matured, we began to try to find ways to take bits of the scaffolding away to give her more control over and responsibility for her own pursuits, endeavours, and relationships. Now we are in the period where she wants nothing to do with anything that smells of direction, unless it’s offered in the spirit of a meek house elf making magic and then quietly disappearing. I, unfortunately, have never been very good at meek, much to Jessie’s chagrin. So we bounce back and forth between “don’t tell me what to DO!” and “you HAVE to help me!” I often end up in bed with the covers over my head reading Lamentations or Job. Sometimes a Psalm will help. And when all else fails, there is laughter.

But it is a very real challenge to figure out what the non-negotiables are. Do you let your son or daughter . . . eat until they feel sick? Wear dirty clothes to work? Wear sparkly gold-lame clothes to work? Go for days without washing? Miss parties? Doctor appointments? Go late to work? Forget their lunch? Cross at dangerous intersections? What things are teachable, and what are not? When Jessie was little, we assumed ALL were teachable. We are learning now that all are not that easy to teach and that she may need some support in some areas for a very long time, and that is okay. But how do you determine where to keep going (patience, patience, it may not happen in your time, but her time), where to intervene (keep the bank card at home so there is no risk of spending unreasonable amounts of money in one shopping spree), where to let natural consequences do the teaching (if you forget to set your alarm, you don’t wake up, you’re late for rehearsal, and you let down your friends and co-workers), and where to just let go because it’s not really your business (sparkle blingy tops to a yoga class)?

There are so many variables at play . . .  and not all of them are predictable. How is it that Jessie learned to do an impeccable job on her teeth, including mastering the waterpik, once she got braces on with very little coaching from me and she needs no reminders to brush properly twice a day, but she won’t dry herself properly after a shower and has to be reminded to actually have a shower? I really don’t know what makes or motivates her to learn and master certain skills. She wants to learn to cook, but won’t follow step-by-step instructions.

So, we and she are learning by trial and error. It’s the trial and error and review and discussion that help us figure out what kinds of supports she still needs, and what areas we should be letting go of. The bottom line is, will it kill her? If yes, we intervene. We teach, but we’re also not willing to live with the consequences, so we intervene.

If it won’t kill her right away, but may in the long-run, we try to develop some simple rules and supports (around food, it’s the rule of 1: take ONE cookie, ONE slice, ONE, ONE, ONE, you can’t go wrong with one, its simple, it’s a good place to start, it doesn’t require much thinking or decision making) and are ready to intervene when it’s just not working.

If it won’t kill her, but will have a negative effect on her independence, being in community, and quality of life, we try to figure out what supports are critical and put them in place. This is still a work in progress and we have a growing list on the white board that now includes (these are the things that we have found to be critical in supporting her freedom and independence): Sunday review of the calendar and upcoming weekly commitments; Thursday review of accounts & spending, with monthly account session at the end of the month; 1^st of the month shopping for basics (bus pass, toiletries, hair); nightly review of what’s up the next day; and an agreed upon basic daily routine (based on a 9 to 5 work day, where there is no media (except work, social, or education related) and a small list of tasks (check, respond to, and file email; work on goals; do chores) to be completed.

And if it won’t kill her at all, we just step back and let her be her sparkly, blingy, Glee-loving, song-singing, romantic, creative, so totally unorganized, messy self.