1. Wake up to alarm (5:30am)
2. Draw visual schedule
3. Wake up children and pull out of bed (no lazin around under covers in my house!)
4. Get dressed, brush teeth, drink coffee, fix hair, apply makeup, test blood sugar
5. Morning stretches with Gracie
6. Morning brushing with Sandis
7. Check and Record Gracie’s blood sugar.
8. Pack up snack for Sandis
9. Pack up lunch for me
10. Ensure hats, mittens, and jackets are on all.
11. Ensure that Sandis has backpack.
12. Troop on out to the car.
All of this to a litany of verbal prompts, physical cues, my reminding voice, and their annoyed sleepiness. I’ve managed to add a 2 minute visual schedule scrawl, 2 minutes of stretching, 4 minutes of brushing, and 1 minute of glucose testing into my morning routine. Nine minutes added to my morning routine. How easily could you add nine minutes to your morning routine?
I haven’t touched on my evening schedule and how these things also permeate it. I didn’t get around to mentioning that the brushing regimen should be done every hour and a half, and before any activity where Sandis needs to be focused and less hyper. It doesn’t even touch on the 1 minute spin I do for my son right before bed, or really whenever he asks for it. It doesn’t reflect the several visual schedules I draw each day, and the reassurances I voice when things do not go as scheduled. My morning schedule doesn’t reflect the evening shot or three blood sugars done at night, one inbetween 1 – 3 am. It also doesn’t include those things which aren’t quite yet in my schedule, things like putting on and taking off thera-togs and carb-counting on a three year old’s scale.
That PCA (personal care attendant) that Medicaid could help us cover is feeling a lot more needed. I understand that a lot of families do this on their own, but I’m trying to figure out how to cook dinner, change clothes, test blood sugars, and do a brushing regimen ALL AT THE SAME TIME. We are making it, but we could do so much better with an extra hand around here.
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6 comments:
You do need extra sets of hands!
I will think helpful thoughts for you!!
Cheers,
Drea
what would you have to do to get a PCA- is it a major, drawn out process? Wish you could, that's alot for just one person to handle!
Yes, you certainly have too much on your plate! Like you said at the Amazing Grace Blog - you need a whole other pie. It is terrible knowing your predicament and being unable to help. If only thoughts and wishes could help.....
If not a PCA than I wish you lots of extra energy to keep you going.
It sure sounds like you could use the extra help.
Could you maybe do up the visual schedules and photocopy them, so you don't have to draw them every day? I know nothing about those, so if that's not doable, just ignore that advice.
Maybe do crock pot meals that you can put on in the morning and leave all day. It would give you a little more time in the morning. You can prepare them in the evening, before you go to bed (I know, along with the 87 million other things us parents have to do at night), put them in the fridge and put it on when you leave for work.
I hope you get your extra pair of hands. You deserve them. Does anyone in your support group have any suggestions for speeding up the process of getting a PCA? Do you have access to respite care (or a really smart teen)? I wish I could help.
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