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by David
Wetherow
Perhaps some of the problems with 'respite' stem from the very term
itself.
One 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.
What 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,
etc.
Now, 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.
When we employ/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
sleeping. 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 play together.
With 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 our money).
Now, 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.
With 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 crying baby can really fry our circuits. But again, a
more adaptive description of what we need is shared parenting.
When we are employing/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 set of badly-translated mechanical instructions: "assembly
of barbeque require great presence of mind."
The 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.
'Respite' 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
meant. As I was trying to create a meaning in my mind, what I would
imagine would be something like:
"Respite... ummm... that means 'relief'. This means that parents need to
be relieved of taking care of their handicapped children. That means that
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 translate to
watching tv or 'sitting' while the child is sleeping, especially if I'm
slightly terrified of disability.
So the idea of 'respite' creates at least three problems:
-
it doesn't do
much to help us (or potential workers) understand what's really needed
-
it defines the
_child_ as a burden (one of the 'wounds' that get heaped on our children
is when they are made to feel that they are a burden or a source of
anguish)
-
it tells the
State that all we're looking for is someone who can keep the house from
burning down, etc., which translates into pay rates of $7.00 an hour, or
even less in some places
It also gets
us into ridiculous negotiations, limits and 'inflexibilities' that are
focused on the wrong issues. In Manitoba, 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?
On 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 evenings? Oh... why am I not taking him to scouts? Because I need
to take another one of my kids skating.
The 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
region 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.
Finally, just to stretch our language and everyone else's hearts a bit,
maybe we should 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 employ/engage, but with ourselves, our
children, and the State. Let's try it! See what happens.
Randy wrote:
I 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 take hold...
Thanks, 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 make another
important distinction.
What's 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 innate wisdom.
One more thought... In some cases, shared parenting is exactly what's
needed. 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 of origin.
In 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
flows along extended family, house and clan lines.
When 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 recently 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.
Caring for children with disabilities raises the stakes even higher.
Reprinted with permission from
Community
Works. David and Faye Wetherow share their lives with an adopted
daughter who has complex mobility and communication challenges. They have
long been involved in innovative service development, PATH training and
community-building. They support individuals, families, government and
community agencies, parent associations and self-advocacy groups
throughout the United States and Canada.
911 Terrien Way
Parksville, BC V9P1T2
Phone: 250 248-2531
Fax: 775-535-4897
david@communityworks.info
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If children live
with pity, they learn to feel sorry for themselves.
If children live with encouragement, they learn confidence.
From Children
Learn What They Live, Dorothy Law Nolte |
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