[misc.handicap] kids and their disabled parents

Celia.Corriveau@f233.n351.z1.fidonet.org (Celia Corriveau) (06/28/91)

Index Number: 16499

 >    So glad to hear from you again. I was thinking
 > about the
 > perceptions children have when their parents or parent
 > is
 > disabled.

This is a fascinating topic, and I'm glad you brought it up.
My girls are 3.5 and nearly 6 years, and our experience has
been very interesting.

To begin with, both girls were very matter-of-fact about
their Dad's wheelchair, and because he's a quad and has
limited hand movement, they just naturally seemed to pick up
on which things they could ask him to help with and which
things they needed me for.  The matter-of-factness was in
contrast to some of their friends' attitudes, which in very
young children was often fear.  I think the difference
between your experience and ours on this matter is that
blindness doesn't really _look_ very different, while a
wheelchair is large and apparently, to some young children,
a bit threatening.  I hasten to add that it was only a few
kids that reacted this way, but we did see it.

As Cody, our six year old, grew older she began to realize
that her father's "difference" was an actual impairment - it
actually interfered with his ability to accomplish some
things.  When she realized this, at about 3 and a half, she
went through a little period of what looked mighty like
depression.  She asked a few questions, such as, "will Daddy
get fixed?" and "why can't Daddy walk?" and so forth.  She
was clearly very upset that her Dad had this difficulty.  I
remember trying to be very open to her questions, but
finding that she didn't really want to talk a lot about it,
other than to gather information.  Now, I should probably
mention here that Cody's considered a special needs kid
herself by the school district because of what they refer to
as "giftedness."  It seems that her extreme sensitivity to
such things at so tender an age is related to this, and to
the fact that there's a discrepancy between her (very early)
intellectual realization of the ramifications of an issue
(disability) and her (normal-for-age) emotional ability to
deal with those ramifications.

Once she finished adjusting to her new perception of her
father's disability, she went through a stage where she
seemed to be quite critical of him.  It was as if she
resented his having this condition that other Daddies don't
have.  She became very sensitive to my reaction to things
that I wasn't even aware of myself, such as times when I was
very tired and the kids needed help or Jerry needed help and
I provided it with less than excellent grace. :-)  Lest you
get the wrong idea, our family is very close and supportive
of one another, but like mothers everywhere I burn out
sometimes.  Cody, during one of those times around about
then, remarked once, "I wish Daddy wasn't in a wheelchair, then you
wouldn't be so crabby all the time."  That certainly set me
on my heels, I'll tell you!  In fact, of course, I had only
been crabby for a couple of days, but in a child's
perception that seems like "all the time."  What struck me
as remarkable was her associating Jerry's disability with
extra pressure on me, and then attributing my "crabbiness"
to that pressure.  Seemed amazing in a not-yet-four year
old.  Anyway, she got over that, and I of course got over
that particular burn-out, and since then Daddy's disability
has faded into the background again as something she's
finished adjusting to for the moment.  She and her dad have
an excellent relationship, BTW, they have the exact same
(baaaaaaaaaaaaad) sense of humour, and revel in telling
jokes together that get a rise out of Mommy.  They also
share a deep interest in science, specifically things
biological, and spend a lot of time watching nature shows,
looking at things under the microscope, and so forth.

Taylor, our 3.5 year old, has only recently begun to ask
those questions about Daddy's wheelchair.  On realizing that
Daddy has limitations that she personally doesn't have, she
seemed to take the whole thing much more in stride.  Taylor
is a more socially skilled child than her sister, and  seems
to deal easily with social rules and exceptions that throw
Cody for a real loop, so that may explain in part the
difference in her reaction so far.  Lately, just at the age
when Cody was going through all of those grief stages,
Taylor has become very devoted to and adoring of her father.
She will take direction from him far more easily than from
me at the moment, and greets his arrival from work with
great glee.  His opinion is also the one that counts these
days.  Most of this is fairly normal 3.5 year old response
to Daddy.

I think the difference in their styles of dealing with this
issue is really just a reflection of their different
personalities.  Cody is a reflective child, who while really
quite outgoing, is nevertheless wont to spend lots of time
by herself reading and role playing with her dolls and
thinking about things.  Taylor, on the other hand, is a
charismatic social butterfly whose personable nature is due
partly to her ability to put herself in _anybody's_ shoes.
She's also a natural optimist and highly affectionate.

 > and most of the kids we regarded as family. The
 > children were
 > facinated by David, especially the 3-4 year olds.
 > Lethan would
 > bring a toy to David and ask if he could see it.

Yes, my girls' friends have reacted similarly, in that
they've asked many, many questions about how Jerry was hurt,
why he needs the wheelchair, _why_ can't he walk, and so
forth.  The reactions of other children, except for the
really young, timid ones who were frightened by the chair
itself, have generally been unabashed curiosity.

 >    Someone on Blinktalk was discussing the very sad
 > situation
 > where a man hated his parents because they were
 > disabled. I
 > simply cannot believe this is not an acception. I

I'm certain it's an exception, I have no doubt that both of
my daughters love their father very deeply.  They would be
staggered by the concept of reacting to him negatively
because of his disability.  In fact, I suspect that as they
grow older, they'll have _more_ rather than less respect for
him, as they come to appreciate just how many are his
accomplishments and how much he has put into his life.  But
all families run the risk of being dysfunctional, and I
s'pose the disabled are no less likely to have problems.  It
sounds as though something must've gone very wrong in that
household, alright.

 > know, even as
 > a spouse, that when my fuse is running low, so to
 > speak, I may
 > become impatient if David doesn't complete a task as
 > quickly as
 > I expected. This does not reflect o
 > on David, but on me.

I don't think it reflects on you either.  It's perfectly
normal to become impatient or frustrated sometimes when you
could do something more quickly and easily. I feel that way
too sometimes, especially when I've got PMS :-).  I try to
keep a lid on it, because I care about Jerry and want to be
a nice person, but when I don't succeed, he understands that
I'm only human too, and that's just life in the fast lane.
:-)  In fact, it's a bit of a joke around here, I'll start
to say, when faced with meeting yet another need, "I'm only
human," and the whole family will chime in with, "I only
have two hands!"  It kind of defuses some of the
frustration, since the girls think it's a big joke!

 > How do your children feel about
 > this? I
 > guess the best way to handle it is to discuss it
 > together.

Sometimes they get irritated, and aren't shy about saying
so.  But on the other hand, a lot of the time they feel very
competent, being able to help their great big competent
Daddy with something that they can do more easily or better.
I think kids need very much to feel needed in their family,
and that's one thing a family with a disabled parent is in
an ideal position to provide.  Of course, it can't be
carried too far, but they have a sense of pride in helping
not because their parents have made up some job so they'll
"learn to contribute," but because they really are _needed_.

 > Then
 > again, that is usually the best way to solve most
 > problems.

Yup, no quiet folks in _this_ family!

 >   Well, I'll talk to you later. David and I bought a
 > new
 > computer desk and we have to assemble it ourselves.
 > Such
 > joy!<grin> Him and I are not the handiest people
 > around, but I
 > think we can do it.

Yeah, I know about that....:-)  I got handy really fast,
since I'm the only one who can do a lot of that sort of
thing.  Now I actually do those things voluntarily!  Built a
climbing apparatus out back for the kids last summer (brag,
brag!!!) :-) :-)  See, we adults like to feel all competent
too!

Well, looking forward to hearing from you.

Cheers, Cele

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