Saturday, July 29, 2006

Why Kubler-Ross is Just Plain Wrong about 'Acceptance'

I've been looking at a book I bought about the issues parents face while raising disabled children. I bought the book quite some time ago, and look at it from time to time, but have not really read it through. It's called Nobody's Perfect, and it's by Nancy Miller (I think--the book is downstairs right now).

The title isn't a great one--there's a long subtitle, but I can't recall it off the top of my head.

What I like most about this book is that it articulates the different stages parents go through--the different stages of 'adaptation.' This word, 'adaptation' seems particularly apt to me. I've never like the word 'acceptance' that we get from the Kubler-Ross stages of grief vocabulary, in part because I don't think that you should apply the way one deals with a death to the way one deals with a growing and developing child, no matter how differently that child is developing from his or her typical peers.

'Acceptance' seems to me wrong on all counts. It implies that one reaches an end stage of understanding or adjusting or living--and that an end stage to this process of raising a disabled child is something to be desired. This seems contrary to the process of living: to absorbing new information, enhancing and increasing understanding--contrary, in fact, to the idea of growth. 'Acceptance' is not about growth; it's about ending.

To me, 'acceptance' implies giving up. I give up on alternative courses of action when I 'accept'. For example, one might 'accept' that one is a terrible softball player, and not play any longer. That might be reasonable or practical, especially if one has no great interest in softball to begin with. However, if one 'accepts' that, that eliminates the possibility of trying, practicing, taking instruction, etc. In short, 'acceptance' denies and precludes growth.

This is what I think: 'acceptance' is never what you want or should do--it's what other people want you to do in order to make life easier for them. The people around you want you to 'accept' your child's shortcomings so that they don't have to work hard with the child or have hope or deal with their own feelings about the kid. They want to put the issue to rest so that you'll stop talking about it or worrying about it, or whatever. But is that best for you or your child?

The term that makes sense is 'adaptation', because that is what the process of life is all about, for all of us, disabled or able-bodied. 'Adaptation' implies growth and development, and accommodation for things that are unchangeable or slow to change. It involves developing new skills, solving problems--in short, the most important LIFE skills.

The Miller book defines the four stages of adaptation as: 'survival', 'searching' (both inner and outer), 'settling in', and 'separating'. Survival mode is when everything is falling apart, a new medical or behavioral or school or social problem has emerged, and all you can do is confront the changed circumstances and deal with life on a day to day or hour to hour basis. You're just reacting and problem solving. You're generally in shock, which means you're numb. Been there.

Searching is when you're examining your own feelings about a situation (inner), which you don't have time to do when you're in survival mode. Your feelings are beside the point then. You have time to reflect and you do. Outer searching might involve looking for new treatments when not in a state of crisis. Been there.

Settling in is the best stage. Things have reached a plateau and everything is in a steady state. The family is a well-oiled machine and there are actual routines you can count on. This is when parents have the opportunity to really get back into their jobs, go back to school, etc. I started my MFA program when life was I was in a settling in phase. The hard part about keeping with the degree process and trying to persist to completion is that life has not remained in a settled-in state over the last few years--we've moved in and out of survival and searching modes.

Separating is when you engage in behaviors or actions that enable your child to achieve some independence. Typically developing children usually initiate these things on their own, but disabled children need help or they need parents to set up situations that create a measure of independence for them. The book mentions that special needs children often do not sleep over or visit friends or relatives either at all, depending on their conditions, or not as much as other kids. Robert doesn't have the opportunity to do this at all. The only times he's been away from us, his parents, has been when we've taken a weekend away--and that happens rarely. Roger and I haven't been away for a long weekend together in over 18 months. We don't have the support that allows us to do that. When we leave, Robert is cared for in our home. He's never taken a trip by himself, away from us, even just overnight to a neighbor or local friend's house. No one can handle his medical needs.

Separating also involves parents trying to allow themselves to let go and let their child have independence, which, in our case, is particularly difficult when your child is dependent on you for all bodily functions, including eating and moving. And communicating.

Anyway, this is a great book--Miller talks about how sometimes parents go through these stages sequentially, sometimes they move through them in a circular or hopscotch kind of pattern. I see that as true.

I went downstairs to get the book--the author is Nancy Miller, and the full title is: Nobody's Perfect: Living and Growing with Children Who Have Special Needs. And, frankly, I think the four stages of acceptance are applicable to any number of difficult life situations: catastrophic environmental events, serious illnesses, divorce, accidents, even the loss of a loved one.

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