Joy--since we have the same name I'll jump in here...Is it likely that you
will want to go off to school at some point?   If so that might be the wat
to begin, talk about your needing to get used to a personal aid in advance.
We do all my daughters care ourselves... If Dr. mom is on she talked of a
respite house in NJ--no kids parents only...maybe a special weekend for them
& and an aide or respite center for you would jump start their thinking.
Do you have an aide at school now...my daughters aide gives us a weekend
gift once a year--& takes her over night..it is hard on Sarah she is so
dependent-- but she ois 12 so I hope she will become more dependent.    hope
I've given you some ideas.  Where are you located/ Do you go to camp?
maybe a 2 week camp session for you would give them a break also---I would
love to talk with you some time as a teen with Cp---Joy
----------
>From: - Joy - <[log in to unmask]>
>To: [log in to unmask]
>Subject: Advice Needed
>Date: Mon, Mar 6, 2000, 9:42 PM
>

>For those of you that don't know me, I'm 16 with spastic diplegia CP.  I
>need help with bathing, dressing, transferring, and other such things.  My
>parents handle all of my care themselves.  My dad ends up doing the vast
>majority of it, simply because of my height and his strength.  I'm worried
>about the effect this is having on my parent's marriage, and also on my
>parents.  They have no time for themselves, and no time to pursue their own
>interests.  I love them, and I don't want to be a burden.  Does anyone have
>any suggestions as to how to get them to consider getting an aide to help
>with caring for me?  I've mentioned it, and they always say that it's no
>problem, and that they do it from love.  I know that's true, but what they
>want to be able to do and what they can psychologically and physically
>handle are two completely different things.  Does anyone have ideas as to
>how I can approach this and help them, without making them feel useless or
>guilty?  Thank you so much!
>
>~Joy~
>[log in to unmask]
>http://www.geocities.com/joy0823
>"Never underestimate the power of stupid people in large groups."
>