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C-PALSY  March 2000

C-PALSY March 2000

Subject:

Re: Advice Needed

From:

Betty Alfred <[log in to unmask]>

Reply-To:

St. John's University Cerebral Palsy List

Date:

Tue, 7 Mar 2000 03:12:07 EST

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (81 lines)

In a message dated 03/06/2000 9:35:56 PM Eastern Standard Time,
[log in to unmask] writes:

<< 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!
  >>
 Hi Joy,

There will be other people on the list who can share with you on a more
empathetic level, since my disability was acquired later in life.
Nevertheless, I can sympathize with your feelings.  I have some thoughts
about this, but only you can decide whether they have merit.

You have reasonable concerns, and it seems logical that you would not want to
be a burden to your parents.  I see two aspects of this situation (from my
limited perspective).  My first thought is that your parents love you with
that special "Mom and Dad love."  Indeed, they do have additional tasks
because of your disability.  This is a characteristic of your family
dynamics.  You are their daughter, and they continue to assume caregiving
tasks because they love you.  Generally speaking, I believe that when a
parent says that his child is no burden, he truly means it.  Perhaps you
could devote some thought to the possibility that your parents really mean
what they are telling you.

Of course, there exists the possibility of family and physical strain that
should be relieved, but your parents are trying to protect you with a "white
lie."  It sounds like this is the possibility that is troubling you.  If this
is the case, perhaps they do not want you to feel like a burden to them.
They love you, and would -- no doubt -- do anything to prevent you from
emotional stress in this regard.  They also may not see that you are
well-adjusted enough not to confuse getting help with being abandoned in some
way.  In other words, if this is the case, they may be trying to protect you
from something that is not even a threat.

It is very difficult to assess the situation without intimate knowledge of
your family situation.  These options are only food for your thoughts.

The second aspect of this situation is that you are becoming a young woman,
and are probably developing an ever-increasing desire for autonomy.  Although
you didn't mention that this was a factor, you would be well within your
rights to give it consideration.  At this stage of your life, you might not
want your father to assist with ADL.  Again, only you know whether this is
part of your desire for outside assistance.

Joy, you are a kind and considerate daughter to think about the welfare of
your parents.  If I had a daughter, I would hope that she would be just like
you.  I do want to point out though, that your parents are adults and are,
therefore, responsible for their decisions.  Even if they are feeling stress
from providing assistance to you, they have elected to offer that provision.
They are responsible for their own physical health, as well as the health of
their marriage -- you are not.  You have shared your concerns with them, and
have offered a solution if they need to seek alternatives.  If they have
chosen not to do that, you have the right to enjoy relief from these
burdensome thoughts.  You have done all that you can.

On the other hand, if you have some personal motivation to request an
alternative arrangement, one that would allow you to feel more independence,
I believe that you have a valid reason to approach your parents.  I would
think that this would be a normal expectation of a young woman your age.

It may be also, that they will be more receptive if you approach them from
the angle of a personal desire, one that certainly seems age-appropriate for
you.  Perhaps if you give this a little time, and consider these
possibilities, you will be better able to form your strategy before you
discuss this with your Mom and Dad again.

I hope something here was helpful.  My very best to you,
Betty

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