--- Betty B wrote:
> Where on this planet is this kind of thing sure not
> to happen, because
> children with disabilities are so welcomed in their
> communities.


It starts at home Betty. Starts with Mom and Dad and
the acceptance of the child. That is often easier said
than done however. You concieve a child in joy and
carry it as long as you can. Some like Alex came way
to soon( he was 1# 14 oz when he was born.) Some are
hurt during a full term delivery and others aquire
injuries from everyday living. It's a strange kind of
loving because  from the day that child is born you
know you may need to make funeral arrangements at the
same time. It's easier to try not to love so it won't
hurt so bad to lose. Easier but not really possible.
Then you have to make life and death decisions on a
daily basis. Do you put a DNR on the baby? Do you
insist on heroic measures which means this tiny little
newborn will be subjected to painful tests and
treatments in order for him to just survive. The
treatments are not a guarentee that the  child will
escape disabilites either. So you have to live with
the knowledge that you love your baby enough to want
him to live but that you are also making it more than
possible he'll require continuing medical treatment(
often painful as well) throughout childhood and life.
Alex can't name the animals in a zoo but can tell you
about reflex hammers, IV's, xrays etc. This is what
your decison has done to him. All before you can even
bring him home from the hospital. There can be guilt
that you allowed this to happen,even if it was done
because you loved that baby too much to let him go.
There are parents who live with the double whammy of
loving a child enough to fight for him to live and
loving him enough down the line to say to let him go
in peace. Plays hell wit your emotions. Alex
I'm no where close to becoming a Robert Latimer
despite the guilt I have. I've decided the gift I can
give Alex isn't good health and freedom from
disability but a sense of him self that he is person
and not a disabilty. I and his dad as well as his
brothrs and sister treat him as a normal little boy
because he is a normal boy. That he has disabilities
doesn't change that.I walk proudly beside him holding
hand with him while he is in his WC. we walk proud
because I am proud of him. Strangers aren't allowed to
by him candy at the check-out in order to make
themselves feel like they did  good deed for the "poor
little boy" Because he isn't a poor little boy any
more than his sibs are. He isn't allowed to get away
with sassiness or bad behavior, a disability isn't an
excuse to allow that. I refuse to get militant on the
disabilities issue when it comes to Alex( outside of
the doctors) and the public. My attitude towards Alex(
that normal 7 yr old boy) tells others how to react
with him. If someplace isn't accessible, I'll still
take Alex and and strangers are more tha willing to
help get him there. That caues them to think and maybe
take action( I've had these people complain to mngt on
Alex's behalf)and the ball starts rolling from there.
I could get nasty, rudy and loud and just turn people
off and be stuck with no help. Then again I may be
just deluding myself and Alex gets these positive
reactions from people because he's cuter than you ;)
Joanne

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