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
> >