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 > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com