Amy,

Sounds like depression to me. Knowing what you have said about her not caring
for herself, I think it would be hard to get her to see a psychologist or a
social worker or some kind of counselor, but I think that's the best starting
place. You can all take it from there.

Amber K.


----- Original Message -----
From: Amy Price
To: spinabifidacentral@yahoogroups.com
Sent: 2/2/2008 11:07:35 AM
Subject: Re: [Spina Bifida Central] Living independently with S.B.


My 20-year-old step-daughter, Ivy, refuses keep her own room and bathroom in
sanitary conditions. She throws her pants and underwear (filled with feces) on
the bathroom floor and leaves them there until someone else comes in and picks
them up. (Sometimes she even hides feces-filled clothes and/or towels in dresser
drawers, under her bed, or in the back of her closet.) I cannot imagine what her
own apt. would be like after a few weeks of living on her own (without someone
constantly telling her to clean her room.)

Ivy came to live with her father when she was 9 years old..approx. 11 years ago.
Up till that time, she had lived with her mother...who neglected her in more
ways than one. (When Ivy's father discovered this, he took Ivy from her mother
and gained sole custody of her.) Ivy had to have multiple surgeries (re: her
bowl and bladder) when she was 9 and first came to live with her father. (Her
mother had not even taken her to a doctor for several years prior.)

Ivy is immature for her age (20 y/o) and currently has a pressure sore on her
rear end that was discovered when it was approximately 3.5 cm deep...Ivy knew
about for months and hid from her father.

This is how the wound was discovered...
Her father suspected something was wrong, so he told Ivy he wanted to check her
body for sores (about 3 months ago). Ivy refused to turn over and let her father
check her back-side, so he had to forcibly turn her over to inspect her body.
This is when he first became aware of the hole/wound.

When her father discovered the wound, it was deep enough to feel her spine. If
her father hadn't taken action on this (inspected her body and arranged for Ivy
to immediately get to the wound care center), the wound likely would have never
been discovered until Ivy died or was close to that point.

The wound is healing very slowly...with a vac and nurse who comes every other
day to change the dressing/vac. At the rate the wound is healing, the doctors
believe it will probably be another 4-6 months before the wound is healed.

This is the 4th time Ivy has had a serious wound and kept it hidden...until her
father insisted on checking her body and discovered the wound himself. This is
the first wound Ivy has gotten on her butt. The previous wounds have resulted
from pressure sores on her legs and feet - which Ivy obviously knew about...she
sees her legs every day. Should he really have to do this with a 20-year old
woman?

Ivy's father is frustrated with Ivy because she is unwilling to take any
responsibility for her own life. Ivy graduated from high school in 2006. Her
father had hoped that Ivy would be able to obtain a college education and live
independently one day, but that does not look like a possibility in the near
future.

Ivy has flunked out of a local community college (where she was taking mostly
remedial courses). She has no social life to speak of. She spends her time
watching TV and talking on the phone (even prior to the discovery of the wound.)
She is supposed to stay in bed & keep the pressure off her back-side to allow
the wound to heal...she doesn't follow the dr.'s orders on this either.

I do not mean to say everything is deplorable about Ivy. She is intelligent and
has the ability to succeed in school; she behaved irresponsibly and did not give
her full effort in college. She bathes herself, dresses herself, and has the
physical ability to be independent...despite the fact that she has paralyzed
since birth from the waist down due to spina bifida & uses a wheelchair for
mobility.

Ivy appears to be in denial about her disability. She learned from her mother at
a young age that the way to handle her disability was to pretend it does not
exist. Understandably, Ivy doesn't want to be "different" from others her
age...BUT SHE IS! She doesn't want to talk to or hang around other people who
have disabilities. She seems to think that if she ignores a problem long enough,
it will go away.

We are very frustrated with Ivy and are worried about her future. We would love
for her to live independently...but Ivy seems content living in her father's
home...isolated at her end of the house (by her choice).

Any suggestions? I fear Ivy may end up in a nursing home if she does not start
taking better care of herself.

Sorry for the length of this e-mail...but I have no one to discuss this with,
other than her father, who has any idea of the multiple problems (bowel/bladder,
learning disability, emotional and social problems) associated with spina
bifida.

Thanks for taking the time to listen and allow me to vent my frustrations.

Amy

teeanna1989 <no_reply@yahoogroups.com> wrote: What does being in a wheelchair
have to do with being independent and
living alone or not , the way i look at it is anyone that is in a
chair has just as much of a chance in life as a person who can
walk.And if the door is not opened up for her to try to live on her
own then we will never know if she can make it out in this big cruel
of a world .
I figuered we are going to try out a apartment that is eficentcy that
way she will have a kitchen and a bathroom handicap set up for her
and a main room , the way i look at it she will like it and make a
great thing of having her own place or we are going to fall flat on
our faces.
--- In spinabifidacentral@yahoogroups.com, tony m <soxfaninri@...>
wrote:
>
> i live on my own and own a home.im married to a non disabled
woman.until 2 yrs ago i work full time all my life. im on ssdi now. i
have a shunt, can walk, but with difficulty since a tethered cord.
back in depends after 22 yrs of continence due to a bladder impalant.
there are many differetn phases of spina bifida so i guess the
success of the person being on thier own depends on the severity. i
might not be in this position if i were in a chair or worse. who
knows ? maybe i would. tony
>
> Carl Malchoff <whitebuffalo7905@...> wrote: I rent my and
house and I'm buyinng one in the near future. I commend you for
having the foresight to give your daughter the opportunity to live on
her own. A lot of parents are afraid to have thier kids do something
like that. If I can be of any assistence please feel free to contact
me.
>
> Carl Malchoff
>
> teeanna1989 <no_reply@yahoogroups.com> wrote:
> How any people with sb have there own apartment or places of there
own?
> as a single mom I am looking into my daughter having a normal life
and
> being out in her own apartment.she will be 21 this summer and out
of
> school.
>
> Try not to become a person of success, but rather try to become a
person of value-Einstein
>
> ---------------------------------
> Never miss a thing. Make Yahoo your homepage.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> ---------------------------------
> Never miss a thing. Make Yahoo your homepage.
>
> [Non-text portions of this message have been removed]
>





Amy Price ladyprice24@...

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