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
>