Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Well, I guess 9 is about as early to a nineteen year old as 7:30 is to a 9 yr old. It really cuts into their social & learning time when they have to go to bed so early. Even in the summer, when all the other kids are out running til 10 pm, Aubrie's exhausted. If she stayed up to play then, she'd have to nap midday. So it doesn't matter when it is, she's gonna have to miss something in order to rest. And how do you fit all of the necessary day's activities into less hours than other people have? Our kids have more to do - all the regular stuff plus therapies and extra lessons at school (like typing and stuff) plus it takes longer for them to do some things. Makes me crazy. It's like she's being so short-changed by life. All the critical stuff has to have it's time - so social and fun seems least critical and pay the price. But they are just as critical. It's a crummy balancing act. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of linda ludwig Sent: Wednesday, May 02, 2007 6:08 AM To: CHARGE Subject: W. Hi , As a 19 year old Karlee goes to bed around 9:00. She actually gets up pretty well around 6:00. However, it doesn't seem to make a lot of difference. It's like you said - working overtime to hear and balance are fatiguing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 tim,needs to go to bed at 8,to get up at 6:15 but could go to bed earlier most nights--just doesn't want to, maria RE: absent semi-circular canals - Aubrie is also very fatigued. We don't know for sure about her semicircular canals. But I do know her balance is off, her muscle tone is weak, etc. We think those motor issues contribute to her fatigue, but so do her hearing and vision. It takes a lot of effort to attend to everything when your senses are compromised. I'm sort of encouraged to know that Karlee still has a respite room. Aubrie does - and I am comforted to know that it is possible to continue it on indefinitely. We also encourage lots of eating - never mind any school rules about snacks! How early does Karlee have to go to bed? Aubrie still goes to bed at 7:30 or 8 in order to get up at 6am. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Hi guys, has always gotten up by 6 am. It doesn't matter if he got to bed at 1 am he will be up by 6 am. For the most part he gets to bed by 10 though. Funny thing is he may get tired during the day but you can't convince him to lay down. He will fall asleep sitting up. Staff at the house told me they saw him sitting in front of the computer with his hand on the mouse sound asleep the other day. The only time he has layed down during the day is when he's sick. He thrives on routine. It's funny, when he's home, he'll get up early eat some cereal. I'll make something between 9 and 10 and he'll eat again with us. Come 12 he's got to have lunch. When I remember how hard it was to get him to eat by mouth it's amazing to me that now he'll eat anything not nailed down and boy you can tell he enjoys ever mouth full. He loves bacon cheeseburgers with onion rings. mom to 31 > > Well, I guess 9 is about as early to a nineteen year old as 7:30 is to a 9 > yr old. It really cuts into their social & learning time when they have to > go to bed so early. Even in the summer, when all the other kids are out > running til 10 pm, Aubrie's exhausted. If she stayed up to play then, she'd > have to nap midday. So it doesn't matter when it is, she's gonna have to > miss something in order to rest. > > > > And how do you fit all of the necessary day's activities into less hours > than other people have? Our kids have more to do - all the regular stuff > plus therapies and extra lessons at school (like typing and stuff) plus it > takes longer for them to do some things. Makes me crazy. It's like she's > being so short-changed by life. All the critical stuff has to have it's > time - so social and fun seems least critical and pay the price. But they > are just as critical. It's a crummy balancing act. > > > > Michele W > > > > _____ > > From: CHARGE [mailto:CHARGE ] On Behalf Of > linda ludwig > Sent: Wednesday, May 02, 2007 6:08 AM > To: CHARGE > Subject: W. > > > > Hi , > > As a 19 year old Karlee goes to bed around 9:00. She actually gets up pretty > well around 6:00. However, it doesn't seem to make a lot of difference. It's > like you said - working overtime to hear and balance are fatiguing. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Hmmm. thanks for confirming that we're not alone. Sure is frustrating. But, for me as the Mom, it's nice to have that extra time at night. I guess that would be the silver lining - but I can't think of a silver lining for the kids. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of PATRICK HALLORAN Sent: Wednesday, May 02, 2007 9:40 AM To: CHARGE Subject: Re: W. tim,needs to go to bed at 8,to get up at 6:15 but could go to bed earlier most nights--just doesn't want to, maria Quote Link to comment Share on other sites More sharing options...
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