Joanne,

I thank you for writing this because you brought up something that I feel I
can contribute to in this discussion.  My father ALWAYS wanted me to have
EVERY operation that the Drs. could possibly do/suggest... to "make her
normal".  Now some may say- "Oh, but he only wanted what was best for you."
No, he was/is a VERY self-centered selfish person.  Yes, they fed me, gave
me physical shelter, put clothes on me...  I will say that my mother did
attempt to do good by me, but that is all I can say about them.  I,like
Rayna, have no contact with my parents, my choice.  So, I can't say that I
had "great" parents like some of you have said, but I am glad for those of
you who had good ones.

Paige


>From: joanne <[log in to unmask]>
>Reply-To: joanne <[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: living w/ my family
>Date: Tue, 24 Apr 2001 08:18:55 -0400
>
>Dear Jennifer, Rayna and all
>I'm about to give you the something to think about from the parental side
>of
>the fence. Alex who is 6 has spastic quad CP and multiple other
>disabilities. I have been involved with all the school and medical
>decisions
>regarding his life. He is also my 7th ( and last child which explains his
>middle name of Omega). I always new something was wrong. My hubby was and
>still is in denial about Alex's disabilities. His parents are study in bad
>parenthood but that is the model of parenthood he grew up with. DH
>literally
>built our house from the ground up. In all fairness it was years before
>Alex
>was a twinkle in his eye ( or Max and Noah for that matter) but it is the
>most handicap inaccessible house ever built. It is a raised ranch which
>means you must travel up stairs to get to the living area no matter which
>way you come into the house. The driveway is also a steep incline.The front
>yard is small sloping hill with a big drop-off over a retaining wall.
>Hardly
>a safe place for playing for a child with mobility and balance issues.
>Inside the house Alex gets around crawling. DH can remain in denial because
>all the other boys are wrestling and crawling around the floor most of the
>time too so Alex just fits in. No ramps as of yet but the would be
>impractical anyways with the large slope of our land. I have had to fight
>with DH for every service such as early education and every piece of
>equipment such as a WC or walker because it confirmed what he didn't want
>to
>know. Every surgical procedure was met with argument even though I did all
>the research and he often refuse to read any of it. It sounds like Alex has
>the father from H*** but far from it. DH loves Alex with his heart ad soul
>and just wants him to "outgrow" this stuff. He is coming around ( he's even
>beginning to listen to suggestions about selling the house) because being
>the wicked, manipulative wife I am I make sure he has to experience the
>problems  that occur by denying the existence of Alex's disabilities.
>"honey, can you take Alex to the store and pick up a pair of tennies for
>him?" then he has to try to find shoes that fit over the afo's. "honey,
>here's some money, take the kids to McD's while I scrub the floors" and he
>gets to try to put Alex in those inaccessible high chairs with his braces,
>or watch him fall over in the hard to sit booths and spill his food, rather
>than taking his wc and letting him eat in comfort. I let him watch the
>longing as Alex watches all the other kids play in the play area. I make DH
>carry Alex up all those stairs. I don't say anything as he refuses to park
>in a handicap spot and tries to put the wc together without the safety of
>extra room the handicap spot provides. Recently DH has been asking about
>adaptive sports for Alex. Yeah I still had to be the one who found the info
>but he'll be the one who coaches when we find a sport(s) to do, just like
>he
>does with his other sons. He takes Alex outside ( in his wc now, no less:))
>and shows him how to build a deck and gives him wood and a plastic hammer
>and lets him go at it just like he's done with his other kids. He's also
>taught me not to hover over Alex as I'm prone to do.  So sometimes the
>denial is easier than the reality. It doesn't make it any easier for you I
>know but maybe it will help explain somewhat. It will also make you a much
>better and emphatic parent than your parents could ever be.
>Joanne
>----- Original Message -----
>From: Jennifer Lahiff <[log in to unmask]>
>To: <[log in to unmask]>
>Sent: Tuesday, April 24, 2001 12:39 AM
>Subject: Re: living w/ my family
>
>
> > I didn't realize certain things until I got married to an understanding
>and
> > very adaptive husband ..but when we moved to Michigan in 1988 My parents
> > bought a 2 story home with stairs.  They never made ramps or any
>adaptions
>,
> > my chair had to stay in the garage.  They never got a van with a
>lift..so
>I
> > was often not able to go to certain places..When I was 12 I saved up
> > allowance to buy myself a shower chair because I kept falling..
> > I  don't know..maybe im being ungrateful???
> > Jennifer
> >

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