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Reflections on 'Respite'

by David Wetherow

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.

Perhaps some of the challenges associated with the idea of 'respite' stem from the very term itself.

When 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 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 child in distress can really fry our circuits.  But again, a more adaptive description of what we need is shared parenting.

When 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 set of instructions for assembling a barbeque: "... 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:

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it doesn't do much to help us (or potential workers) understand what's really needed

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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)  

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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 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?

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?

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 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 State.  Let's try it and 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.

2003 David and Faye Wetherow ! CommunityWorks

 
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