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When you consider the millions of things that have to happen exactly
right during gestation, it's miraculous that the vast majority of babies
come into the world in perfect health. But that doesn't make news of
congenital birth defects any easier to take. I know, having been there
myself. Last year, the day after our boy-girl twins were born, a
doctor sat my wife and me down to tell us our daughter Claudia had Down
syndrome and a heart condition.
We did not see this coming, and the news was devastating. But with
work, patience and a great deal of help, we managed to regain our
footing pretty quickly. So here are some suggestions on how to cope with
bad news of the developmental sort, generally applicable to most such situations.
(And by the way, Claudia is now 14 months old and doing quite well;
thanks for asking!).
- LET YOURSELF OFF THE HOOK.
A natural initial response is to feel guilty or somehow responsible, as
if you've done something that deserves punishment. But it's a feeling
you should purge as quickly as possible. The best thing to tell yourself
is that things sometimes just happen for no reason anyone can fathom.
Having a child with special needs does not reflect poorly on you as a
parent or person. Anybody who makes you feel as if it does is someone to
be shunned.
- TAKE EVERYTHING ONE DAY AT A TIME.
Trite, but it bears repeating. Depending on which condition is involved,
it could be years before you'll know much about your special-needs
child's capabilities. So obsessing too much about what might happen
5, 10, or 20 years down the road is a waste of time and energy;
whatever you're worried about most likely won't even be an issue by
then. This is not the same thing as short-sighted denial. Everyone must
plan for the future--obviously, those of us with special-needs children
most of all. But your focus should be primarily on the here and now, on
things you can actually do something about.
- REACH OUT.
Find the local support group for your category of special-needs child.
Other parents going through the same thing can be enormously comforting,
and offer valuable advice and insight. There is also a wealth of
literature, at the library as well as online.
- REMEMBER: OTHER PEOPLE WILL TAKE THEIR CUES FROM YOU.
It's okay to feel sad, depressed, angry. You'd have to be superhuman
not to feel that way at least some of the time. But keep in mind that
your friends and loved ones are probably unsure about what to think of
your situation. If you act like it's a tragedy, they will most likely
think the same thing and act accordingly (which might amount to avoiding
you altogether). Seeing you making the best of a difficult situation
sends a powerful message.
- GET THE MOST UP-TO-DATE MEDICAL INFORMATION POSSIBLE.
Do not automatically assume your doctor has it. We've heard stories from
other parents about some doctors who still use "The M-Word" (as in
"Mongoloid") to describe children with Down syndrome.
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