so today was the day we though we might just make it over to Shepton Mallet for the rest of New Wine '09. Wasn't to be. More pox yesterday, a disturbed night, and then Little Fish slept until 12noon, only waking extremely reluctantly after I had given her a feed and meds. Mog and Courtney made the most of a quiet morning too.
This afternoon we went to an extremely exciting and very special drive-thru, after which three of us sat in the carpark outside pc world having an extremely unusual in-the-car chip picnic whilst the remainder of us (i.e. me) took a fried laptop in and argued with the tech guys. Spot which family may have been actually watching a tiny bit too much Charlie and Lola.
I'm doing an assessment at the moment, part of my fostercare practice development stuff. I had to stop as too annoyed with the answers the thing was trying to get me to say. So quick poll for you - do you think it is necessary to make more choices on behalf of your disabled child than it would be if your child were not disabled?
Tia
I really think that is a "well, duh!" question, but for the record: YES! Definitely more choices, especially after a certain point.
ReplyDeleteNot just what to wear, what to eat, when to sleep, etc.
But also, which doctor, which specialist, which medicine, which surgeries and when to have them. Also, to use emergency meds or not. Do we fight for a piece of equipment or do we leave it be for now? Are they in pain? What do we give for pain? What activities do we attempt? Does the child really enjoy the activity or simply endure it?
Certainly, as the child gets older and a normally developing child would be able to make some decisions, they are usually all left for the parent of the disabled child to decide.
Even as simple as "is my child thirsty?" They can't tell us, and so we have to decide. And do we give the water by mouth or use the g-tube? Will they aspirate or won't they?
Some days I get bone-weary making decisions.
I hope this helps, Tia.
Alesha
DUH! What are they thinking? I 'm remembering trying to think if Alicia broke her foot or it was just the scraped toes making her cry? Had she not been disabled she could have told me her ankle hurt really bad or even to tell me where she hurt!
ReplyDeletePlus how do you know when they are really really ill? Lots of things like Alesha brought up.
Of course you have to make more choices! Good grief.... Is this supposed to help you learn something?
ReplyDeleteDuh.....LOL
ReplyDeleteTrina and Jophie
Questions like that are just insulting!
ReplyDeleteDoesn't it depend on the child? No doubt that I have to make most decisions for J as do many of the people I know with disabled children but can't see LF letting you make too many day-to-day decisions for her! And I can't see that changing as she gets older and wants to be involved in the medical decisions as well. Even our lives are more than yes/no answers ;-)
ReplyDeleteK
shepton is so near us.. maybe we can meet next year?
ReplyDeleteLynds and Ben x
yes although it depends on the impairment. I don't make decisions for number 2 with aspergers but for Celyn I have to decide loads of things.
ReplyDelete