Ask Christopher Willman, 10, what the world would be like if everyone looked and acted the same, and he won’t hesitate to tell you how boring that sounds.
Starting when he was very young, parents Cathy and Eric Willman of Brownsburg, explained to Christopher that his colon issues – which necessitated several early surgeries and kept him in diapers longer than his peers – were just a way that God had built him a little differently. Later, when he was diagnosed with autism and ADHD, he understood them as just another aspect that made him unique, Cathy says.
“We talk about how he has a special brain, which just means he thinks things and has to learn things a little differently than mommy and daddy and some other people,” says Cathy. “We tell him that sometimes it makes it hard for him to sit still, but that it also means that he thinks of things in ways that would never have occurred to me, and I love highlighting it when those things pop up.”
Talking to children about their special needs can be a daunting task for parents, who must weigh how and when to address the topic, along with their child’s cognitive abilities to understand the information.
It’s a question that comes up frequently for Carol Crawn, a Health Information Specialist with Family Voices Indiana and mom to Faith, 12, who has autism, seizures and food allergies. She encourages families to start the dialogue with their child early.
“I tell families to just be open about it. When you try to hide things, that’s when people start to think there’s something wrong with it,” she stresses. “As the child gets older, and if parents haven’t had that conversation, the child will know something is going on and will wonder, ‘Why are mom and dad not talking to me about this?’”
Address your own emotions first
Before addressing a child’s special needs with them, experts say it’s important that parents allow themselves to work through their own emotions first.
“That reset for families when they get a diagnosis is hard. Life is altered from what you anticipated when the child came into your family,” says Dr. Mary R. Ciccarelli, Director of the Center for Youth and Adults with Conditions of Childhood, or CYACC, at Eskenazi Health, and Associate Chair of Pediatric Education at the Indiana University School of Medicine.
She cites the popular essay “Welcome to Holland,” written in 1987 by Emily Perl Kingsley, which uses a metaphor of a tourist bound for Italy who ends up in Holland instead and must then grapple with the initial disappointment and eventual appreciation of the beauty of the unexpected destination.
“You have to allow yourself to have grief as a parent and then move on and celebrate what you have,” Ciccarelli says. “Only after that can you begin to learn as much as possible to help your child.”
Using everyday language
Once parents are ready, they should start incorporating discussion of a child’s special needs into their daily life, giving the child information at the level he or she can understand and use, experts say.
For example, a young child with cystic fibrosis can learn that medicine sprinkled on his or her food will help them feel better after they eat. While there will be conversations later about how the enzymes work to counteract thickened digestive juices, the key is providing age-appropriate details.
“Parents shouldn’t feel afraid to use the diagnosing term or to be specific about the child’s condition. The key is not being negative or focusing just on what they can’t do,” Crawn says. “As soon as Faith was diagnosed at 3, we’ve been using the word ‘autism,’ and her brother, he doesn’t know a world without autism. This is just normal life for them.”
How your child views their special needs will depend largely on how you view it yourself. Take time to think about how you want to talk to your son or daughter now and in the future. As always, other families in the same situation can provide valuable tips and support. Try contacting Family Voices Indiana (www.fvindiana.org), About Special Kids (www.aboutspecialkids.org) or IN*SOURCE (www.insource.org) for more information.