Bending Over Backwards

How far do you change your routine to suit school etc...

I changed Khaleb's insulin times to fit in with his Early Learning Centre's morning tea time. I thought this was fair enough.

Khaleb is only there for just over 2 hours, twice a week in the school term (38 weeks a year). Today they have told me Khaleb took too long to drink his bottle. I had a discussion on how to rectify this. One option being that Khaleb could get a bigger morning tea and not have the bottle. After coming home I am thinking to myself that this really wouldn't be a good idea. He is still going to have his bottle when I get him home and the total of his diet is going to be changed and the times all through the afternoon that he will have lunch, afternoon tea and dinner. I also think depriving him of a drink isn't such a great idea. Sure, I could work it out but if I do this it will need to be a 7 day a week change for the benefit of a place that he spends a total of less than 5 hours. I would love to just give Khaleb water out of a cup but he just can't manage that and I have tried and tried!!! If I force the issue he just refuses to drink, blood sugar goes high then crashes and he gets quite constipated (Down's kids tend to have slow working bowels at the best of times).

The reason that the bottle is a problem for them is that there is less learning time in an already very short session. It is annoying though because another kid gets taken to the toilet 4 times in the session where Khaleb can hold his bladder like a camel. Surely that kid is missing out on the same learning time?

Anyway, I feel like I'm having to bend over backwards when what I do works. Khaleb's blood sugar was 7.0 at morning tea time and 5.2 before lunch. Why would I want to stuff this up?

Do other parents get requested to change things to suit other people or do they work around you? I find it really hard when I have so many things to keep in check with Khaleb. Sometimes I just find it depressing :cry: . I do think Khaleb's education is important but in other ways I figure he's going to need someone with him for the rest of his life so why bother knocking myself out when we can just do stuff at our own pace. The outside help received is pitiful so I am basically a nurse, speech therapist, occupational therapist, teacher and physio.

Anyway, what requests have you had and how many did you actually think were reasonable?

I should have pointed out that his Early Learning Centre is just for Special Needs kids. There is 2 staff for 5 children. I have just put up with them changing the teacher aide in the room and now the other person trained is going on long service leave. I've already had the experience of leaving Khaleb with half trained staff and they would have been about 20 minutes off calling an ambulance. It doesn't end up 'me' time when I have to keep popping in and out or staying there. The nurse who does the school based training may be able to come in and I think I will arrange for that to happen (again).

This is more frustrating than any benefit.

Today everything just got a little bit worse.

Khaleb had his first hypo at his Early Learning Centre today (normal breakfast/insulin etc). I have the best 'Hypo Action Plan' that even someone who knew nothing about diabetes could follow. They did phone me to tell me Khaleb's blood sugar was 2.4 so I told them what to do immediately and follow the instructions on his Action Plan.

They did not follow the plan at all and even though they did feed him they did not retest him for 45 minutes. By then he was 2.8 and they phoned me again. I went straight there and found them just sitting with Khaleb and not bothering to feed him more. I fixed his blood sugar in 10 minutes and stayed there till finishing time. I also discovered that they left his action plan in his folder and didn't even look at it!!!! :evil: :evil: :evil: :evil: I have now put a copy of his Action Plan in his glucose monitor pouch and with his bag that has hypo treatment in it. Khaleb had a bsl under 3mmol for probably close to an hour. Can I swear now?

To make matters worse I had told them that I got up and checked Khaleb twice during the night because I felt strongly that he wouldn't last (but both times he had bsl 8 and 7). I told them that I did a bsl at 9am that was 8.2 and I gave him some extra food because I still had that funny feeling he wasn't right. I told them I had concerns and to keep an eye on him. I don't know how I know he will hypo but sometimes there is just something about him that seems different.

Thanks for reading my complaints. It's driving me mad but all the teaching in the world doesn't seem to sink in to some people. :roll:

Thanks for all your comments.

Khaleb is sick today so at least I know why he had such a hypo last Friday. Khaleb often has a sudden, out-of-the-blue hypo a few days before he gets sick. Anyone else find this?

At least I don't have to have a panic attack while he is in the care of a couple of novices next week at his Early Childcare Centre (Staff member is going away for 2 weeks) and I have a good excuse just to keep him home with me I had planned just to stay there with Khaleb anyway.

Anyway, I'm sure I'm in for a long night, as per usual, with sick child. If only Khaleb's immune system picked on the bugs instead of his thyroid and pancreas :roll:

Xx

Khaleb's cough is a bit worse today and levels occassionally spiking high and needing correction so happy to keep him home with me. My confidence in the people Khaleb sees without me is really blown and they are just going to have to understand that I need that back before I can happily walk away and leave him.