Reflections on 'Respite'
of the thing that distinguishes families who have children with
disabilities is that they don't get the normal opportunities for separation
from their kids that families do who are not raising kids with disabilities.
does this look like in ordinary life? Kids
visiting other kids, kids
going to movies, Cub Scouts, kids playing in the garage loft, swim club,
if we were employing someone to help us (and our kids) get a normative amount of
that kind of time, we wouldn't call it 'respite' -- we might
call it 'connection' or something else.
some of the challenges associated with the idea of 'respite' stem from the very term itself.
we engage someone to support connections, there's an
understandable pattern of effort and
direction involved, and it doesn't translate
to watching television, or just being on site while the kid is
Connection is connection -- you know when it's happening, and you
know when it isn't happening.
You move in the direction of Cub Scouts,
swimming lessons, and supporting kids to
kids who need a lot of support, parents miss the normative amount of
'down-time' when the kids are at home --
time when we're not paying direct
attention to the kids -- when the kids
are playing in the backyard, watching
tv, doing homework, just hanging out.
The care/attention requirements are
more like those experienced by parents
who have a small baby -- it's a tough
time, but you know that it will get
better as the child grows up (although
it's cyclical -- dealing with
13-year-olds can give us a pretty good run for
if we were employing someone to help us and our kids get a normative
amount of that kind of 'down'-time, we
wouldn't have to call it
'respite' -- we might call it 'shared
parenting' or something else.
kids who are really sick, hurting, challenging, vulnerable, we can find
ourselves exhausted -- being up with a
baby is one thing, not being able to
comfort a child in distress can really fry our
circuits. But again, a more
adaptive description of what we need is
we are engaging someone to share parenting, there's also an
understandable pattern of effort and
direction involved -- and like
'connecting', it doesn't translate to
watching television, or just being on
site while the kid is sleeping.
Parenting (even shared parenting) ideally
involves engagement, teaching,
nurturing, play, reading, bubbles, paint,
magnifying glasses, etc. As every mom (and some dads) know, it involves a
tremendous amount of skill, creativity,
endurance, and as we once read on a
instructions for assembling a barbeque: "... great presence of mind."
pattern is knowable, teachable, do-able. The pattern is focused on
nurturing and development. We know when it's happening, and we know when it
isn't a knowable pattern. If I were
a 'civilian' (someone who is
not immersed in the language and
assumptions related to disability) and
someone called me and asked me to
"do respite", I wouldn't know what it
As I was trying to create a meaning in my mind, what I would imagine
would be something like:
ummm... that means 'relief'. This
means that parents need to be
relieved of taking care of their
handicapped children. That means
what I'm being asked to do is to keep
the lid on -- keep the house from
burning down, and keep the kid from
dying." That can easily
watching tv or 'sitting' while the child
is sleeping, especially if I'm
slightly terrified of disability.
the idea of 'respite' creates at least three problems:
also gets us into ridiculous negotiations, limits and 'inflexibilities'
that are focused on the wrong issues.
In one state, for example, 'respite'
could only be used to allow the parent(s)
to leave the house. What if what
I need (tonight!) is someone who can
share a great time with my kid while
I pay the month-end bills?
the other hand, in one of the letters in this thread, 'respite' was
defined by the State as something that
could only happen inside the house.
What if what I need is support for my
child to attend Cub Scouts on Thursday
bottom line: parents need to be in a position to say "This is what I
need, this is when I need it", and
make it stick. Hugh LaFavre, in a
in upstate New York, set up a support
for families based on exactly that
premise -- families got what they
needed, as much as they needed, when they
needed it -- and there was virtually no
abuse of the system.
just to stretch our language and everyone else's imagination a bit,
maybe we chould experiment with a
household ban on using the term 'respite'.
It would force us to be more explicit
about what we're after, not only with
the people we engage, but with
ourselves, our children, and the
Let's try it and see what
believe though that the terminology would have to be shifted more
towards something like "shared
caregiving" as opposed to "shared-parenting".
The term parent just carries too many
legal/moral obligations to get that to
Randy. I found myself worrying
about the term 'shared
parenting' for the same reasons -- there
are elements of the parenting role
that are almost never shared with
others. Shared caregiving begins to
another important distinction.
happening here is very interesting. When
we take the lid off of a
term which we use out of habit more than
anything else, we begin to
collectively discover and share our own
more thought... In some cases, shared parenting is exactly what's
There are many cultural traditions that support this (extended
family patterns, especially among First
Nations people in Canada and the
US), and a couple of interesting service
patterns, notably Nancy Roseneau's
'associate family' program running out
of the Macomb-Oakland Regional Center in Michigan.
Although here again, the ultimate legal/custodial
responsibilities remain with the family
the Nisga'a communities in northern BC, there are very complex, highly
articulated patterns of sharing the
care, nurturing, and moral education of
children. It's described as a system of 'traditional caregiving' that
along extended family, house and clan
I was raising young kids, I was once told by a Cree teacher that before
the Europeans replaced the traditional
roles with western institutions, "the
parents' job was to love the children,
the uncles would discipline the
children, and the grandparents would
teach the children". We had
moved to Canada, leaving any remnants of
our extended families on both
coasts of the US.
Now that I understand this better, I realize what a great
loss this was, both to our kids and to
us as parents.
for children with disabilities raises the stakes even higher.
© 2003 David and Faye Wetherow ! CommunityWorks