Should severely disabled children be kept small?

Comments

1. 

   November 11, 2006

   Guest

   As the subject person is, is God’s will. How he or she develops is God’s will, too, and not ours to tinker with, even if it does seem to be ‘better’ for him. It isn’t as if we are treating his case of disease, but our response to it.

   I remain your obedient servant, but God’s first,

   Pristinus Sapienter

   (wljewell @mail.catholicexchange.com or …yahoo.com)
2. 

   November 12, 2006

   Guest

   Hmm… I'm not sure I find that convincing.  If it is God's will that the person be disabled, then why try to prevent birth defects?  Why try to perform an operation on a child while the child is still in utero to correct a defect?

   On the other hand I understand the idea that what is being managed here is our response to the child, rather than the disability. That was my first response.  But then again, isn't the entire existence of institutional care a matter of managing our — society's?, the familiy's? — response to the disability?

   What happens when the other siblings go off to school or move away and the disabled child becomes too large for the parents to adequately turn to prevent bed sores?  What happens if the father dies and the mother is not strong enough physically to manage the care?  There are so many family variables that require management of the care of the disabled person, that I think to say that no decisions should be made solely on that basis is not realistic.  That fact is that in these families management of the care of the disabled person is something that must frequently, if not daily, be negotiated.
3. 

   November 12, 2006

   Guest

   Christian and scientific effort may work to correct in a treatment, or give support to weakness. That is managed care, whether to patient and/or others’ response. To manipulate such as growth, and entail the basic creative genetics of God’s construction for accomplishing little more than making the person more like an appliance than a human grace is just one more step down the slope. It is convenience manipulation, not treatment. A few steps later – overdose him with anasthestic and euthanize ‘the poor thing’.

   Aren’t the familial and the societal dimensions of care for any in any need also part of God’s will? I rather doubt families are in any way demanding such manipulation; it sounds more like some Medicaid idea. If old Mom-the-caretaker can be counted on even longer, the public aid won’t be necessary to take over for her.

   You must know from my past posts that I trust government as much as Washington and Lincoln did – they didn’t. They trusted initiatives from out of the soil bed of citizenry, not some bureaucratic wet dream. They knew, and I know. As St. Paul advises, test everything but keep only the good.

   And, the good in shrinking any human being is?

   I remain your obedient servant, but God’s first,

   Pristinus Sapienter

   (wljewell @mail.catholicexchange.com or …yahoo.com)
4. 

   November 13, 2006

   Guest

   Well, in this case it was the family that requested it.  And they did so precisely for the purpose of being able to continue to care for the child at home, where she is a responsive — though at the level of an infant — 6yr old who is a treasured member of the family.  Again the logic is that since the person must be cared for and transported, fed and diapered as an infant must be — that caring for her at home could become impossible once she reached full physical size.  Transporting her and keeping her able to travel with the family, be carried wherever they went etc. and remain close to them, would become a physical impossibility.  They wanted her size to more closely match the level of her mental development. Not because she is an appliance, but because they want her with them.
5. 

   November 14, 2006

   Guest

   . . . okay . . . and, on their terms that can yield to the child some unforeseen blow worse than any institutional care . . .

   What happens if medicine develops treatments that will advance her away from her current debilities? What if her differentness inhibits her abilty to so grow into advanced therapies?

   It still seems to me that the child is treated as a convenience item – an effective appliance, as I see it – to fit the family rather than the family maturing to the child’s needs as the child matures in any ways she can. Bloodily sarcastic of me, surely, (I can get nearly violent about how innocents are treated) but why not just bind her feet and keep her in a rather formidable box to force small dimensions?

   I remain your obedient servant, but God’s first,

   Pristinus Sapienter

   (wljewell @mail.catholicexchange.com or …yahoo.com)
6. 

   November 14, 2006

   Guest

   I have to go with Pristinus on this. The statement that

   “[t]he well-being of the whole person must be taken into account in deciding any therapeutic intervention or use of technology. Therapeutic procedures that are likely to cause harm or undesirable side-effects can be justified only by a proportionate benefit to the patient.”

   [emphasis mine] indicates that it is speaking of treatment designed for the treating or curing of disease – and this treatment does neither – making it different in nature from inutero surgery or attempts to prevent birth defects.

   That it is the Will of God may mean that it is His will that the parents actually experience “redemptive suffering” through caring for their daughter as she ages. Certainly it is best that she is cared for by family, but in this case she has more than just her parents, she has “functional” siblings as well.

   Easy for me to sit here and express my thoughts, though. It’s not an issue I have to deal with. But it does seem to echo much of what so many have to go through now in caring for aging parents…those who do have no choice but to provide for an adult. I’ve no doubt that the child’s parents are loving, I only think they are misguided in trying to make their “duty” (the subject of another post) easier.

   Michael

   “The Christian ideal has not been tried and found wanting; it has been found difficult and left untried”
   – GK Chesterton
   “The poets have been mysteriously silent on the subject of cheese.” – ibid
7. 

   November 15, 2006

   Guest

   Mary and Michael (such potent names on this site!)

   In another venue, I have remarked on the humbling blessing, a grace and wonder for and to and of caring for the forever-innocent. There are not just ‘weeds’ to the task. There is a special love to be shared.

   But, yes, Michael – it is easy for us bystanders to go 20-20 on such things. We don’t actually have to do more than ‘see’. And, actually, I am closer to being the cared-for than any care-taker. I am certain that any care-taker(s) will wish she/he/they could shrink me!

   I remain your obedient servant, but God’s first,

   Pristinus Sapienter

   (wljewell @mail.catholicexchange.com or …yahoo.com)
8. 

   November 15, 2006

   Guest

   Why even bother (according to the Anglican Church). May I direct your attention here

   Michael

   “The Christian ideal has not been tried and found wanting; it has been found difficult and left untried”

   “The poets have been mysteriously silent on the subject of cheese.” – GK Chesterton