P is for....

Prognosis

Well, what I have really been thinking is ‘the [evil] prognosis people’ – the people who ask about your child’s future.

Rob at Kintropy put this in my mind this morning when I read this part of his post: “we are (often) asked what Hannah's prognosis and diagnoses are.  The prognosis one always stumps me.  This question is often code for exploring Hannah's worst possible outcomes.  Will she ever walk unassisted?  Will she ever talk in a way that people other than her parents can understand?  Will she eat by mouth rather than by g-tube?  Are you parents being realistic about her life's trajectory?

Of course, Janette and I usually answer this question by pointing to Hannah's love of music.  Her prognosis, we hope, is to become a rock star (rather than a groupie).”

The prognosis people are [evil] because they shouldn’t ask so directly and their motivation is from curiosity, not concern or with intent to help, or even to develop a relationship with Rob and Janette.

Other [evil] prognosis people are the ones who definitively predict a dire life for a child with a diagnosis. I don’t really know any of these people, but many parents have told me about them. I was taught in my education to become a therapist – both times – that only a medical doctor can give prognosis. It’s one of those traditional boundary lines we-of-lesser-than-the-Merely-Divine dare not cross.

My self-perception is that my work is constantly in the direction of improving the prognosis for the children and families I advise. But I wondered to myself today I could sometimes be one of those [evil] prognosis people. I have predicted dire consequences from not moving. I have mentally questioned the care of every teenager unable to sit and stand. I am all too familiar with what physical dysfunction looks like.

I was thinking these things as I assembled a gumbo this afternoon. The roux darkened slowly and I stirred it intermittently, chopping peppers and onions between stirs. All the while I had a favorite dvd in the background – one that brought another p-word to mind.

P could also be for Prophecy.  Prophecy and prognosis could have some overlap in meaning. In the movie I watched, a prophecy was considered both valuable and true. Those who knew the prophecy could make better decisions based on the facts of the prophecy, er, the words of the prophecy.

Both prophecy and prognosis are but mere words, eh? How we respond to the words, that’s real stuff of prognosis, and the foible of prophecy, as in ‘self-fulfilling’. Rob and Janette respond to poorly-intentioned questions with humor – a hugely sane and mature response.

Just before composing this post I perused some of my favorite blogs. As commonly occurs, I saw another post related to the stuff of this one. You might say I could have predicted I would find a related post. Prophesied. Prognosed – oops, not a real word.

Jacqui at Terrible Palsy shared how she does not like to think about her son’s future. She concludes with: “As I watched him watch, I realised that I don’t want him to watch from the side lines as others have fun.”

I’m thinking that predicting a child’s emotions and thoughts is beyond even the Merely-Divine-people. We’ve all seen our children experience and show joy. That potential is sadly lacking from prognoses made by physicians for children with diagnoses. I think parents make joy the self-fulfilling prophecy for their children.

You have borne a third p-word in reading this post; me, waxing Philosophical. You might think of that old joke that PhD stands for ‘piled higher and deeper’. This, too, is where I stand in life. Thanks for reading.

Comments

[Rob at Kintropy]

Thanks for your thoughts. The funny thing is that the few medical prognoses we've encountered have been wrong, so we've found it easier, in some ways, to swim unchartered waters & make it up as we go, focusing on what Hannah can do verses what we perceive she cannot do (yet). This has been a good way not to fall into a self-fulfilling loop.

That said, we probably could have used more medical insight as we worked in that direction. For example, while we worked hard with Hannah to move her from ventilator dependency to breathing on her own, she developed severe scoliosis. In her hierarchy of needs (breathing, eating, etc.), this wasn't extremely high, but I wish a bit that we'd spent more time on that earlier. Working on it now, but still....

[Barbara]

Breathing seems to be a very appropriate top priority, Rob.

I discourage you from second-guessing yourselves. Definitely do not beat-up yourselves, thinking you should have done differently.

From this distance, I don't think you can assume that her scoliosis is based on anything that you did or did not do.

[Julie]

Well, I have been wallowing in the idea of prognosis this week. I know you have been reading my blog, so you know what is going on in my home. As I have been searching for services for my child, I keep wondering, "Why, if the prognosis for children prenatally affected by alcohol is so poor, can't I find services for my child?" I asked the social worker that came to my home about services for DD and commented that it seemed like Marissa would have to move out on her own, fail miserably and then, and only then, would she be able to get help. She honestly said, "Unfortunately, that is often the way it works." That doesn't seem very proactive to me.

So, while I realize that my daughter's future does not necessarily equal the statistics I see when I read research about adults with FAS, someone, somewhere should be developing intervention strategies and policies based upon the numbers. It sure seems to me that providing job training/placement and subsidized housing would be cheaper than say jail or institutionalized care.

[Barbara]

Two thoughts for now, Julie....
I think there may be many undiagnosed FAS adults out there, dysfunctioning in society - people who did not have a mother like you to make a difference in their lives.

We will be "providing job training/placement and subsidized housing" for our oldest - we're sending him to college (same, is it not?) For now, couldn't you continue with the plan and lifestyle you have, given that you have about 5 more years until she would be college graduate age?

Along those lines, could she get some financial help under the moniker of "scholarship" - to any programming that might suit her - perhaps from philanthropy if not the government?

[andrea]

Great post!

There really IS a difference between a DIAGnosis and a PROGnosis. Outside of medical conditions, and especially into learning difficulties, diagnoses are not prognoses. Furthermore, such diagnoses are DEscriptive, not PREscriptive.

A few summers back I was a personal attendant for a young man with considerable cognitive impairments and a number of physical impairments. In the previous year or so he had a different PT who was much more assertive about getting him out of the wheelchair (he crawled otherwise, but of course crawling is socially "unacceptable" outside of your home), about getting surgery to help correct the tendons in his feet, about working through the serious of AFOs and exercises and whatnot, and by the time I was with him, he was using the chair less and less, and walking with crutches and someone holding onto his gait belt to ease him if he lost balance. These things were fabulous for his mobility and ease of social interaction, and for how he did things with his family.

All this was in his late teen years, when many other people would have "written off" further progress because they would have felt he had a "poor prognosis".

andrea