Telling Your Child About A Disability
Why
tell your child about the disability?
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As children grow, they observe limitations
in what they can or cannot do, or they observe differences between themselves
and siblings or other people.
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Children may not be able to express their
awareness in words. They do experience the frustration or challenges
that disabilities bring and your response to limitations. They know.
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Silence, even when parents say “we’re going
to treat this child just like we would any other member of the family,”
may send an unintended message that disability is not acceptable. What
we don’t say is powerful.
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An intense focus on therapy, or intervention,
no matter how necessary, may inadvertently communicate to the child that
he or she is acceptable only when muscles are relaxed, speech is clear,
limbs are straight or fixed.
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Naming a condition gives us a sense of control
over that aspect of our lives. Children need control just as much as parents.
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Words may help children take ownership for
a body that does not have to be perfect. It helps to have a name for a
condition or circumstance that will have a lifelong impact.
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If people never meet another person
who is deaf, who is a “little person” or someone who has Down Syndrome,
they may experience a profound sense of isolation.
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Your child may bring up the disability, asking
you "Why?" or "Why not?" and will look to you for answers.
How
do you tell your child about the disability?
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Bring up the condition early and often. Speak
of any change or limitation in function in a matter of fact way, for example:
“Jeremy, extra drool comes along with CP. Drool bothers people because
it looks and feels wet. To help catch the extra drool, you can wear a neck
kerchief until we figure out some other solution."
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Talk about therapy or surgery in positive
terms.
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Use simple words rather than jargon with your
child. Make special terms seem familiar.
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Strive for balance. Make sure that activities
focus on who he or she is as a person and not the "can do’s" and "can’t
do’s". It's important to have equal time for both fun and therapy.
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Try to introduce the name of the condition,
or terms related to it, in a matter-of-fact way, within a familiar routine,
by dropping it casually into the conversation. For example, “Sam, people
with Down Syndrome often have dry skin. Let’s try some lotion on those
feet. Mmmm! Good!"
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Use positive terms - do not refer to a “good
leg and bad leg” but right and left.
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Use people first language: “John has CP,"
rather than "John is crippled."
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Practice saying words like Cerebral Palsy,
Spina Bifida or Bi-polar or until you say them without emotion.
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Avoid discussing your child’s disability in
his or her presence without including him/her in the conversation.
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