Your Child with Special Needs: Sharing your private issue with others

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http://www.townonline.com/parentsandkids/news/x2130785405

Your Child with Special Needs: Sharing your private issue with others

Milford -

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 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 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 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.