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| /November 21, 2007/ Your Child with Special Needs: Sharing your private issue with others |
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Your Child with Special Needs: Sharing your private issue with others Others
Parents need to make the final decision on whether or not to share information regarding their child's behavioral issues with teachers or others. Consider your child's particular issue and stage of development when making a choice.
By Debi Boucher Stetson
Parents and Kids
Mon Oct 22, 2007, 08:57 AM EDT
When your child has a disability, behavior problem or social disorder, who needs to know?
It’s a tough question with no clear-cut answers.
“It’s a really touchy issue,” said Nadine Briggs, founder of Social Smart Kids and mother of a 10-year-old daughter who has Down syndrome. “I do kind of go on the side of you should tell, but it’s really personal,” she said. “It depends on the situation and the child.”
When her daughter was in second grade, Briggs took the unusual step of going to her school to talk with the class about Down syndrome. She’s been doing it every year since.
“I wouldn’t have done it in kindergarten, no way. But once I saw that kids were noticing that she was different and treating her differently,” she thought a dialogue might help.
And it did. Parents of children in her daughter’s class, she said, had not known how much to tell their kids about Down syndrome, and now they had the information they needed. “It’s not taboo, it’s OK. – all that mystery is taken away,” she said.
Rich Robison, executive director of the Federation for Children with Special Needs, said how a disclosure is made is very important. “If you say the child has bipolar disorder and has violent outbursts, that’s going to be taken very negatively,” he said. Instead, he suggests people talk about what the child needs, rather than a diagnosis. “You might say, ‘Sam needs a little more time to process this,’ or, ‘Why don’t you write it down, so he can see it in black and white?’ The focus should be, what does the child need to be supported?”
Some disabilities, he noted, “are easier to explain than others.” A child in a wheelchair is likely to get sympathy and understanding, whereas a child with HIV or AIDS, or a child with Attention Deficit Disorder, may not.
Behavioral difficulties fall into that less obvious category, said Donna Shea, director of the Peter Pan Center in Harvard, which acts as a clearinghouse for families and also helps children directly via social skills groups. “With behavioral issues, if parents can find some way to share so that teachers understand there’s an underlying issue, it’s often helpful,” she said. “Personally I’ve always been an open book: My kid’s struggling and here’s why he’s struggling, it’s not because he’s a brat.”
But she cautions that the level of disclosure depends on the child, their particular issue and their stage of development. “I’ve sent parents off to school and said don’t say anything and let’s see what happens. Sometimes a parent can be too proactive and put the kid on a teacher’s radar without necessarily having to do so,” she said.
“I do work with a lot of parents who absolutely want to keep it private,” she noted, “and that’s their prerogative. But it leaves the kid open to educators, volunteers, bus drivers wondering what’s up with this kid.”
It’s often helpful to talk with a child’s peers, as Briggs does. “If it’s presented in the right way it can help… because the kids know they’re different, that they’re not fitting in,” Shea said. Talking with their classmates “alleviates some of that teasing and bullying.”
Dania Jekel, executive director of the Asperger’s Association of New England, said that because bullying and teasing are so harmful to children’s self-esteem, it’s important to do things that lower their incidence. She feels disclosure always helps – and whenever possible, it should be by the child himself or herself, rather than a parent.
“We feel when children know about their own Asperger’s syndrome, how to talk about it and how to talk about what their needs are, it’s extremely helpful,” she said, adding, “They might not want to say the Asperger’s word, they might want to say they have difficulty with social things.”
Social difficulty is the hallmark of Asperger’s Syndrome, which is physically “invisible” because kids with Asperger’s look like other kids. “Not only is it invisible, but for kids with Asperger’s syndrome, very often they’re very bright and they’re very verbal, so they kind of confound people,” Jekel noted.
Not all children with Asperger’s Syndrome want others to know about it, she concedes. “Some of them feel it’s stigmatizing. On the contrary, we feel they’re already stigmatized. What we find is that when children are understood, they’re much more likely to be successful.”
Disclosure can be done in a positive light: “You can start with a list of famous people who had Asperger’s – if they weren’t around the world would be a very different place. Some of the most creative and best discoveries have been made by people with Asperger’s,” she said. (Among the luminaries thought to have had AS are Amadeus Mozart and Thomas Jefferson.) “You discuss the positive things and you discuss some of the challenges and you give the kids a way to respond.”
That’s exactly the approach 15-year-old Daniel Sandberg of South Deerfield took in creating a Power Point presentation about Asperger’s that he plans to share at school. So far, he has presented it to families that participated in an “Asperger’s 101” workshop, said his mother, Joani Sandberg. “It was very empowering for him,” she said.
He had his first experience with disclosure in 8th grade, when he was asked to take part in a presentation about difficulties. “He was terrified,” but it went well. “I think certain kids got more protective of Danny, and more understanding,” his mom said. “It’s a really powerful tool.”
Jekel agrees, noting, “We have never seen disclosure go bad.”
Debi Boucher Stetson freelance writer from Cape Cod.
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