Night Parties

[Guest guest]

I know this topic has been discussed numerous times over the years and it's

something most of us have experienced at one time or another. I posted the

following on Kennedy's blog tonight, but thought some of you might get a

kick out of it as well:

Any of you fellow parents of a child with CHARGE, and most of you with

children who do not have CHARGE, know what it's like to go without sleep.

Sometimes, Kennedy wakes up at unbelievable hours and is clapping, singing,

and just rarin' to go for the day; at 3 or 4 am, however, we are not. Even

at 6 am some mornings (weekends, e.g.), it's just not happening. We decided

on a new plan of attack this summer so we wouldn't be awake each day at the

crack of dawn: a visual.

Kennedy is an excellent reader and LOVES signs, especially " rules signs " -

she's the only kid I know who goes to the Mc's Play Place to read the

rules over and over and NOT get on the play equipment. She even likes to sit

by them. There's just something she finds so appealing about those signs

with a line through them representing " no smoking " or " no shoes " for

example. If she isn't familiar with one, she *has* to know what it means.

Last night, she was up really late (and tonight again as well with the

Canada Day fireworks), so I strung some tape across the top of the stairs

with a note about when she could come up and get us. Tonight, when I was

reminding her verbally and with sign, " don't come up until 8:30 " ,

*she*said, " I know, mama, we can put a string across the stairs with

the sign

again. " Yep, she asked *ME* for a sign. What a girl!

So, Graeme and I made two loops in a string and put it across the top of the

railing (which she can easily crawl under no problem) and put a sign on the

middle telling her what time she can come up and to remember to close her

door (that way, when she does want to get up and have a night party, put

DVDs on, watch TV, play video games, etc...she doesn't wake up the whole

house). She's very independent and doesn't get into anything, she just needs

reminders when she wakes up and is super excited that everyone else doesn't

wake up with quite the same " joie-de-vivre " as she does (to put it mildly).

Here's our latest " Kennedy Visual " - the

when-can-I-go-jump-on-mommy-and-daddy sign:

(you can see it at the address below)

http://bp0.blogger.com/_5c3ni9v_jXw/RohuIfJRhDI/AAAAAAAAAQA/bsSE2_mzVdA/s1600-h/\

IMG_4269.JPG

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan