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Subject:
From:
Trisha Cummings <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Tue, 14 Oct 2003 10:30:14 -0400
Content-Type:
text/plain
Parts/Attachments:
text/plain (60 lines)
Hi Kat,

  It is a parents primary responsibility to see that their offspring can flourish on their own - abled bodied or not. Parents do not live forever and the "child" in question needs to be able to function at least semi-independently. If nothing else their comes a day the parent might become dependent on the child to some degree. A "normal" life should be the goal of any parent for their child any child - I want Amber to enjoy her childhood, go off to college, get a job, get married, have kids, taking care of Mom when she gets old, then having grandkids of her own, and retiring, etc. My mother wanted to wrap Amber in cotton wool and never do anything - which included therapy, and wanted to provide for her so never had to work, you can see where this was going - they even threatened to take me to court to get custody of her becasue I am a bad parent - I kept up the battle, she was going to be the best she could be - I was not going to let her be a vegy becasue of this and I also knew I had to accept this limitation to some degree becasue it was real. I was as devastated as any other parent - the best advice I got was from a woman who had a blue baby and we were selling our pick-up to her -so we could buy a van for Amber - she said focus on one day at time - if not you drive yourself crazy - because you greive - and sometimes for stupid things - she won't be able to dance at prom, and sometimes real stuff - learning to walk or talk.

Having said all that - there is no instruction in the afterbirth - we learn parenting - thru OJT, having been parented, and reading. It is subject to our beliefs and insecurities - and I firmly believe for the most part - everyone really does do their best. It is so easy to be the kid and be resentful of what your parents did - its a whole other ball game once you are one faced with the decisions. I try - to understand my parents - and I hope my girls - especially "my" baby - try to understand me. Anything needs to looked in the context of the whole - rather than just pulling out a single point to get bitter about. Parental mistakes are real - but how you deal with them is a measure of you. You can be bitter or you can accept that parents aren't Gods and did their best. After a certain age - our behavior is up to us. You chose to be bitter, you chose to understand, you chose to fight from your insecurities - etc. When you focus primarily on you - you lose the ability to make the "we" connection that is required for relationships.

If having a NDA child is a learning experience - having a "special" child is like learning how to live a whole new planet. Not everyone does this well - and sometimes we get lambasted by other "special" folks - not so much for what we have done but from their points of insecurity. Any time you have a difference with someone - part of the rub - is everyones insecurities. 

                            Trisha - 
who must haved needed to talk - Thanks for listening


> I agree with you, Mag, but it has to come from both sides.  The child (or
> grown-up child) has to be ready to take on the responsibilities that come
> with being dependent.  I've known far too many disabled people who could have
> taken care of themselves very well but weren't ready emotionally to leave the
> nest. (and needless to say, I know quite a few AB people like that, too! ;) )
> 
> Having said that, I can tell you the parting is inevitable, for if you don't
> leave the nest, the parents leave you because they will die; it's all a part
> of life.  I was on my own for many years until my mother got so ill she
> needed help and my sister and I moved in to look after her.  Yes when she
> died, it was very sad, but I think if I hadn't left home before, it would
> have been much worse to go out on my own after she died. It's best to be
> prepared before you have to.> 
> 
> Kat
> 
> On Saturday 11 October 2003 06:57 pm, you wrote:
> > Kathy Jo, I have said this before;
> > Your parents need you to grow up and become as independent as possible.
> >
> > In the end, that is what will make them happy, and it will give them peace
> > in their old age as they become unable to assist you. They don't want to
> > worry about you in your 40's and still at home, unable to be independent.
> >
> > I've just returned from a two day conference where everybody (400 with
> > disability) had a disability (CP, autism, down syndrome, cognitive, and
> > emotional disabilities) and were either on their own with assistance, or
> > they were learning what they needed to do in order to do so.  The range
> > went from people who need complete help with everything, to people who are
> > functioning with mild cases of CP, or cognitive disabilities. Everybody was
> > there with their assistants, or their house mates from a new type of living
> > arrangements called adult family homes where they have chosen to be part of
> > a household where they have the help they need but not any of the awful
> > rules of traditional group homes.
> >
> > There were seminars on every conceivable topic, from self employment, to
> > how to protect yourself from sexual abuse, to finding creative ways of
> > funding entertainment and vacations.
> >
> > Gary was there too, he can tell you other aspects of it.  Jump right in,
> > Gary!
> > In the meantime, I need to write to the hotel because my bathtub didn't
> > have grab bars and I did slip and fall. Ugh! Makes me mad, because we've
> > had this conference there every year for eight or nine years, you'd think
> > they would have put more grab bars in.
> >
> > Mag

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