Over at Claire's blog (http://severedisabilitykid.blogspot.com/2010/08/sick-andor-disabled.html) she wrote about establishing an awareness of the difference between disabilty and illness in our kids. Here is my response.
There is Segev is completely disabled
There is Segev is chronically ill because of his diabilities
There is Segev is very ill, close to death ill.
If you want to categorize, define, seperate, box it.
Then there is Segev is terminally ill because of statistics.
Which of these should be my concern?
When Doctor's categorize our children different perspectives are created and about differences we can and naturally will argue.
For the extremely disabled child deterioration should not be a concern, leave that term for the "specialists" to brandy (sic) about since deterioration in such a child is indeed something which cannot be treated. Unless, as is the case of the caregiver/parent it means MORE FREQUENT illness; this necessitates reassessment of your treatment protocol for chronic ill states, like different antibiotics, better lung hygiene for lung infections or different AED's for seizure's for example.
Since taking care of your child must necessarily be a symbiotic process, ideally the responsible parent is going to be the primary caretaker. But you must learn to filter the doctor's opinion just as the doctor will filter your concerns as a layman's or even as a "hysterical parent".
So we do the same wrong they do? What else can you do?
Education isn't a science, medicine is an art not a science and anyone thinking otherwise is just plain ignorant.
Like i said for those that compartmentalize: extreme disability is one thing that naturally leads to another-chronic illnesses that need to be addressed (especially by prevention) in a prioritized fashion.
Physical rehabilitation can address some problems of the disabilities but exactly as Claire states, we must sometimes relent and allow the patient be more important than the disability. There are certain instances even that the patient becomes more important than the illness, as i have encountered more than once when, close to death, the question of calling an ambulance in order to save his life or letting life choose for itself, was open before me and i chose the uncertainty of life as being the better option over the "certainty" of modern medicine. But this is an extreme example, real but out of the ordinary and thus not useful in Claire"s point of creating a better definition by which we can create perspective for treating our children.
This is certainly one of the reason the vast majority of parents give the treatment over to the professionals. Never shall i judge another parent because each and every one has to listen to their own conscience and interact according to their particular abilities when choosing care for their children. Just know this: no one is an expert, not even the parent who like myself is completely responsible for organizing my son's care both on an executive as well as a practical hands-on level.
I think in the end Claire, concerned with the trend of classifying handicapped people sees the gulf between legislators and the established medical community and the practical real world of caring for extremely handicapped children. But that Gulf seems destined to remain since we are busy taking care of our children and not spending our time drinking coffee with the power's that be, that i believe, turn towards medical professionals for their opinions and parents of much less severely disabled children.
The kind of change in approach that Claire hunkers for necessarily happens at a grass roots level. Education of lawmakers is slow and tedious at best since we have to put up with mind-boggling ignorance and arrogance from the doctor's who are UNWILLING to work together with the parents to LEARN.
But it is exactly people like Claire, eloquent in presenting her arguments, that are the backbone of a grass roots movement to educate others about the necessity and willingness to learn and share. These are the pioneers of conscience and ability of whom later we will say, we have accomplished much, because we stood on the shoulders of giants.