:)
----- Original Message -----
From: ISM <[log in to unmask]>
To: joanne <[log in to unmask]>
Cc: CPL <[log in to unmask]>
Sent: Tuesday, April 24, 2001 12:39 PM
Subject: Re: Re: living w/ my family


> Joanne,
>
> In this and your prior post re my position on List contributions you
> have emerged brilliantly and touched me deeply with your candor and
> clarity.
>
> I much appreciate your willingness to share and speak candidly of your
> household and spousal relations.  Would others be so open I feel certain
> more understanding and compassion would result amongst all of us.
>
> Timing so much determines the course of human relationships.  Some take
> longer to bloom, others are lost in their moments of finest
> possibilities.  I have been honored to be present with you.
>
> My love and best wishes to you, hubby, Alex, and your darling Darrs.
>
> Hugs,
>
> Steve
>
> ----- Original Message -----
> From: "joanne" <[log in to unmask]>
> Newsgroups: bit.listserv.c-palsy
> To: <[log in to unmask]>
> Sent: Tuesday, April 24, 2001 8:18 AM
> Subject: Re: living w/ my family
>
>
> > 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
> > >
>
>