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.
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| 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; 1st
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.
