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 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 had planned just to stay there with Khaleb anyway.