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Being Different: Raising a Special Needs Child
by Silvia Lawniczak
On most days the furthest thing from my mind is my child being
different. We laugh and play together - even bandage changes have
become so routine that they seem normal to us. I don't have any
other children to compare him to on a daily basis, and that might
very well be a blessing. I don't feel sorry for myself, nor do I
feel sorry for Nicky. We just live and take care of what needs to
be done. All that changes, however, when we go out in public.
It can truly be heartbreaking to endure the stares and questions,
and to watch other kids my son's age do things that Nicky will
never be able to do. I often worry about Nicky's mental state
seeing other kids do things he can't do, and that is why I try my
best to have him spend time with children like him. I also try to
creatively help him do the things he can't do on is own. For
example, I hold him in my lap to go on a swing or go down the
slide.
Public Reactions to Special Needs Children
The questions and reactions I get from people are varied. Some
just ask what happened, and then walk away after my initial brief
explanation (yes, they walk away!). Then there are those who seem
genuinely concerned and ask a million questions... I like these
people, but there are only a few of them out there. Some
wonderful souls even started crying.
Then there are those people who think they are out of earshot but
are not, who comment or try to explain to their children what is
'wrong' with Nicky... and they always get it wrong. They will say
"he got burned in a fire" or "he was in an accident" or other
similar comments.
Some people tell me about their cousin or aunt who has a skin
disorder (usually eczema or something similar). They think they
know what is wrong with Nicky, but inevitably they are wrong. Any
skin disorder pales in comparison to EB (Epidermolysis Bullosa),
so I know they don't understand how the seriousness of Nicky's
disease. I often hand out a card that explains Nicky's condition
in simple terms, and that has worked best because it provides
links to websites that provide more information.
Sometimes the stares can be so cruel. There are many different
types of staring. The stares of curiosity usually end quickly.
Then there are the persistent stares - the ones that follows you
for a whole minute or even five. Then there is the 'yuk' stare
(my personal peeve), and the 'poor baby' stare. My favorite is
the stare with a smile... but my child rarely gets those.
I realize that people are curious and notice things that are
different from what our society deems to be 'normal'. Noticing
what's different is a skill children learn at a young age. It's a
part of being human, and it is a skill that enables us to select
the freshest fruit to eat or avoid illness or an accident.
Focusing on the Inner Person
Nicky's only difference, however, is on the outside. His skin may
be damaged, and he may have serious wounds and limitations, but
inside, he's as whole as any of us. Perhaps more. For example, he
has a keen sense of love. His ability to love and forgive me or
anyone else - for anything - is beyond measure. He is also the
happiest child anyone has ever seen. Even after an excruciating
bandage change full of blood and needles, he's so happy when it's
over that he comes to me for a hug and starts singing. And that
smile…it just melts my heart.
My child's disability is only a part of who he is, but because
his disability is so incredibly visible, I feel too many people
tend to concentrate on that alone, and that's sad. What a
different world this would be if people would focus on what's
really important - the person on the inside.
Silvia Lawniczak is a California based writer, web developer,
translator, and the author of a biography in Italian. But first
and foremost she is a mom. Her special needs child, her much
loved Nicky, suffers from the Recessive Dystrophic form of
Epidermolysis Bullosa. Contact Silvia at: ebmom@earthlink.net or
visit her website: http://www.sleepingangel.com/smc.htm
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