“You don’t know how to do this, so I’ll help you,” the voice said to me over the phone. “I’m helping you because you’ve never done this, dear. Next year, you’ll start earlier.”
OK, I admit my pride bristled at the tone and the assumption that I didn’t know what I was doing. Unfortunately, the fact is I don’t know what I’m doing.
What I’m trying to do is organize Deane’s support at home and at school. We managed to transfer the government support to the cottage for the summer. We didn’t get our full complement of hours, but what we got was practical – showers and range of motion physio.
Transferring it back home however has been bewildering. My pride (that again) says it’s not me, it’s the labyrinth of government-funded support.
I started with the basics: Deane needs to get water and nutritional supplements through his NG tube three times a day. The ideal would be that I connect his water before he gets on the bus in the morning and the school staff disconnects it when it is done. Then after lunch, he gets the nutritional supplement through the tube.
Sounds logical, but that isn’t part of this process. Nothing can be running through the tube while Deane is on the bus. The school staff doesn’t touch anything connected to the NG tube.
The upshot? A nurse needs to come into the school. I called the government agency from the cottage to ask for a nurse. Only after the beginning of school, was I told that the request needed to come from the school. That happened a week ago.
My second idea was to switch the personal support worker who had been feeding Deane dinner to someone who could do his physio. I had been trying to do this before the summer.
I was told someone could go into the school to do physio, someone could train the school staff or someone could train a PSW to come into the house. The school liked the idea of someone coming in but couldn’t tell me how that would work. They were also fine with the staff being trained.
Not terribly helpful. I had no idea how often Deane would actually get any stretching at school.
Finally, I decided what I wanted both the school staff and a PSW trained to do Deane’s physio . As clearly as I could, I left that in a message because, apparently, I don’t work the same hours as bureaucrats.
The result: I got a call saying I had been passed to another person because I wanted school-based physio and, by the way, Deane’s doctor needs to fax (??) a detailed referral for the nursing services to begin.
I guess I do need help.