Monday, August 6, 2012

Labels. Not for me please.

Labels, I DO NOT LIKE THEM!  But, unfortunately, I find myself surrounded by them.  It seems we all have labels given to us and we give labels to things and people around us.  My problem with labels is the stereotype associated with them.

What do you think of when you hear these words?  Fat?  Slow?  Confused?  Retarded?  Could it be that you suffer from a mineral or hormone deficiency?  Or could you have Down Syndrome?  See, labels are not what they seem to be.

When we were given my son's diagnosis of Down Syndrome, I had a lot of preconceived notions because of labels.  I was WRONG.  I had not clue what Down Syndrome was or how it was going to affect our family's lives. I worried when Davey started school and all of the labels he was given.   And boy, am I glad I was wrong.

Here is an article about a school in Indonesia for children with Special Needs.  Again, labels and the fear associated with them is a reason parents do not get the help their children need to succeed in life.

Breaking down the ‘fear of labels’

(JP/Prodita Sabarini)

The fear of stigma against children with special needs is sometimes strong enough to keep parents in a state of denial, according to Rovanna Bawden from the Australian International School (AIS).

Bawden is AIS’ Student Support Center head. The center is a new unit for children with disabilities. As the only international school with a designated support center for children with special needs, Bawden said they attempt to break down the “fear of labels”.

Parents who have children with special needs are sometimes reluctant to get assessment from doctors, she said.

They fear that the diagnosis of disorders might come as a verdict of lifelong stigma that comes with labels of children with special needs or children with disabilities. And, some parents fear society’s misconceptions that come with those labels.

“A lot of parents think that ‘if I get an assessment from the doctor then my child will be labeled’ and sometimes they rather not know,” Bawden said.

“So, we’re trying to say that it’s not about finding the label, it’s about helping your child,” she said.

With more than two decades of experience in special needs education, Bawden is certain that the inclusion of children with special needs in mainstream education is essential for the development of a child’s social skills.

She joined AIS in January to head the Student Support Center. AIS founder Penny Robertson and Australia Ambassador Greg Moriarty will officially open the new center today.

Prior to AIS, Bawden headed the Guardian Angels School Learning Support in Brisbane, Australia. Her experience working at international schools stretches from Papua New Guinea to Japan and Thailand.

Bawden believes that parents of children with special needs should be open to sharing their problems in order to find a solution. “Don’t hide the problem. Share your problem and then everyone can help you to solve it,” she said.

Parents of children with special needs often provide homeschooling for their offspring. While the child receives devoted attention and affection, “they don’t get any social skills,” according to Bawden. “They just have mom and dad and that’s a very abnormal situation for the child,” she said.

“You’re not doing a favor really to your child to keep them in the house with you,” she added.

Parents’ worry about providing education for children with special needs is understandable. In Jakarta, parents of children with special needs still have very limited support, according to Bawden. A lot of parents must go to Singapore or Australia to get their children tested or to obtain therapies unavailable in Indonesia.

In 2009, the Education and Culture Ministry set up a regulation on inclusive education that obliges city administrations and regencies to appoint a school in each district as an inclusive school. According to data from the ministry, in 2011 there were around 1,680 special schools and 967 inclusive schools at the elementary and junior high level in Indonesia. Many, however, are still struggling to provide for students with special needs.

In the case of international schools, only AIS has a special unit for students with special needs. Robertson founded AIS in 1996 because she was unable to find an international school that could provide education for her child who has Down’s syndrome.

Bawden said AIS’ new support facility included a package of services that catered to students’ individual needs. Each student has a learning assistant, and the support center has specialists such as a speech therapist, occupational therapist and psychologist. “People come to us now,” she said, while before they had to refer students to Singapore or Australia. The special unit has been running since April with 17 students.

Bawden said that special needs students join mainstream physical education and music classes. She said that the main goal is to help students function as social human beings. “Second, of course, [to give] as much as possible a normal school experience. The goal is inclusion to mainstream,” she said.

“We’re not ever going to say that your kid will never leave this building. This is not for life,” she said.

To provide access to education for students with special needs, Bawden said that there is a need for schools to be open to differences. “Some schools are not so open to differences because they just want the academic grade, but if you look at life, life is not about academic grades, life is about having nice human beings,” Bawden said with a laugh.

“Because we can’t all be rocket scientists, we can’t all be doctors, but we can all try to be nice people and that’s the humanity part.”

I still worry about labels, not because of what they mean to me or I do not understand, but because of the fear and confusion caused by people who do not bother to look beyond the labels.  What are your thoughts?

Be gentle.

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