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